One of our users, Nimzovich76, suggested I create an updated / featured (sticky) Topic containing Success Stories. Great idea ... implemented here!
There is a series of Success Stories, compiled from January 2004 through August 2005, that are on the LymeNet Flash but can not be replied / appended because they are in the "old" LymeNet Flash UBB data base. Those stories are here: http://flash.lymenet.org/ubb/Forum1/HTML/022173.html
In order to post current Success Stories, please "reply" to this current Topic because, as I stated, you will not be able to reply to the above linked Topic ... it's just there for historical reference so you all can read the older Success Stories.
As Melanie Reber originally stated: "Many come to LymeNet desperate for answers and looking for some glimmer of hope...
Thank you to each of the contributors...
Your words of inspiration are more valuable than you could ever know.
Please feel free to add your own stories, so that we all may hold on to hope through our own journeys."
[ 02-09-2010, 10:17 PM: Message edited by: Lou B ]
Posted by bettyg (Member # 6147) on :
Thank you Nimzovich76 for contacting Lou B to create this as a feature!
Lou, thanks for showing Melanie's past post link so folks can go there and read.
2 people have responded to my sensitivities of lights, noise, and chemicals in the last 2 days, and I encouraged them to copy/paste their comments to a thread like this.
If they haven't done this yet, how about being the FIRST SUCCESS stories on Lou's post? Thank you all! Bettyg Posted by AZURE WISH (Member # 804) on :
This is an old thread of a few sucess stories I had put together in 2003 ....
AZURE WISH Frequent Contributor Member # 804
posted 18 May, 2003 01:35 AM -------------------------------------------------------------------------------- hi i went thru some old posts to find some sucess stories... just to reenforce that there is hope. 1. andagail Greetings All,
I was a part of this group for several years as I fought the battle against Lyme. I've been gone a few yrs now (love the new format!). I took oral abx for over 4 yrs and went thru hell. However, my wonderful LLMD told me to hang on and he'd make me better. He did. After 13 yrs of undiagnosed Lyme, a 2nd bite and infection totaling 17 years of Lyme Disease,my life stolen from me, I've now been symptom free for 2 plus years.
I work 60 hrs a week and have (most) of my health back. I was left with a Candida strain that was/is hard to get rid of despite profalactic(sp?) Diflucan. I can't have ANY sugars and little carbs or the "yeastie beasties" make a comeback. A very small price to pay to be rid of Lyme.
I'd take all those pounds of abx again if I had to do it over again (4-6 big pills a day, uck, for 4 yrs straight). I was bedridden for 2 years, had Bells Palsey, partial use of my limbs, partial eyesight at times, headachs, loss of who I was...a nightmare.
I was diagnosed w/ fibro/m years earlier and it took 6 years to get thru college (and I still can't spell ). I had a full diagnosos of 3rd stage Lyme. I'm now left with some crepitis in my right knee and permanent "floaters" where the "vitrius" fluid of the eyes had permanently gaped. Otherwise I'm better than when I was a kid, am in good shape and...Oh, I do have my Lyme Scar as I call it. A line between my eyes from squinting with pain for all those lonely years.
I now feel wonderful and the best part is getting my mind back and getting rid of some excess emotions.
My humble advice is to stay on your abx, try to love yourself and laugh at "Lyme Brain" as much as you can. Stay away from all sugar if you are on abx and take your vitamins.
This group sustained me when I could only crawl to the desk and barely lift my hands and hold my head up to read a few posts. I've had many a cry on my keyboard with this group. I was usually too ill to say much but when I did I was always met with kindness and support. I will always come back to give hope with my story. You all have so much to look forward to. YOU WILL GET BETTER! that's the good news...
A warm hug to you all. You all are in my prayers and thoughts.
andigail
2. Roadrunner
I am 100% but it took over one year!! it does happen if you listen to your doc and do what he tells you!!most important thing are no drinking,(beer,wine) resting,taking your meds,eating healthy!!
------------------ "Beep Beep"
3.oreo
It's been a long time since I got on this board and I remember when I was newly diagnosed how frightened I was of the future, partly based on the horror stories I read here. So I feel it is my duty ( and pleasure) to reassure all the newbies out there that there can be a happy ending to Lyme. After two rocephin sessions ( 3 months , then 6 months) I am now symptom free since last May. I am going to consider myself cured and hopefully it will stick ! Yes, it was a long road ( 2 years, and I was treated almost immed. ! ) but sometimes you get lucky and I have faith that many others will be as blessed as I have been ! Keep the faith ! Oreo
4. GiGi posted on jan 2001
After gotten bit in 1996, I have gone through a great variety of treatments and therapies, all of which together gave me my life back, but not 100%. I kept searching for a solution, being told by my doctor that he suspects a viral omponent to go with Lyme or to play a role in Lyme. Stac's had felt the same way and having come back pain-free from "doctorofhope.com", I explored it further also, checking with other patients that had been treated there. My own doctor encouraged me to go. My husband, who had recently been diagnosed with Parkinsons Symptoms/Lyme Disease, and I went to Mexico for four weeks to be treated.
We are both very encouraged by our noticeable improvement. I have not felt as good in many years; my husband started to improve right away while still at the clinic, yet has a bit to go with healing of the damaged nerves. As for me, I am absolutely pain-free, my racing pulse and heart palpitations are gone for the first time in years and I can sleep soundly for many hours.
Explore the above website. You can also call 1-800-770-6772 for further info. Please note, the phone number on the website is not correct and will be updated in a couple of days. So dial the 800 number. You are welcome to e-mail us or call. [email protected]; Phone (206-232-7603).
5. lymerx
ceftin and doxy together in big doses.
then suprax and tinidazole together big.
then suprax, tini, and zythromax more moderately.
All these taken over 17 months. No symptoms now. I was lucky to have no babesia. I take B Complex 100 for nerves and Milk Thistle for liver. Also acidophilous to restore beneficial bacteria. I found the natural rememdies (grapeseed extract and olive leaf) just too toxic and not nearly as effective as good old anbx.
--------------------------------------- im sure there are many more . i'll try to look lateer... i had this idea about a month ago and its taken me this long to get the energy to do .it .well imvery tired and fingers hurt. best wishes
[This message has been edited by AZURE WISH (edited 18 May 2003).]
Posted by pegee4 (Member # 9869) on :
Hi! About 6 years ago, I was soooooooo sick from Lyme that my husband drove me down to the beach in Oct. and I sat and cried thinking I would not live to see another summer! After 8 months of IV and oral abx my life slowly returned to normal. that includes going out dancing, summers on the beach, vacations like "normal" people, and working all day without falling off my feet. I attribute it to a great LLMD,(Dr. B), better diet, and active strength training and exercise as soon as I was well enough. (had to start with physical therapy!) . I am not perfect because when symptoms return I go back on abx(oral), like now. But if you have a good LLMD, you will catch it before the symptoms get out of hand, and continue to lead a good life. Hope this has helped someone.
Posted by Andie333 (Member # 7370) on :
I absolutely love the success stories; thanks Melanie, Azure and Lou!
Pegee, I'm so glad you added yours. It really gives me a lot of hope!
Andie
Posted by Dayle Ann (Member # 1657) on :
Hey, that was my story way back almost 4 years ago in the original thread! I've come a long way since then. I was still living with my daughter then (who'd cared for me when I was so sick I was an invalid), though my life was starting to come back.
Now I own my own home again: I bought a semi-derelict house a couple of years ago, and though it still needs a lot of work, it's warm, comfortable, and mine. I garden (my goal is to substitute flowers for as much grass as possible). Kinda behind on the actual fix-the-house stuff.
I work part-time at my old profession and love it. I research and write scientific white papers and monitoring plans for the agency I work for, and coordinate projects that involve a bunch of people. To think that five years ago I could only look at pictures in magazines, and could barely follow a conversation with one other person.
From time to time, I get to go out in the field-- this means hiking rough trails in back-country or snowshoeing into remote locations in the winter. This is the part I like best. (Not an indoor type of person.) You better believe I do VERY THOROUGH tick checks when I get back!
I go places for fun. I join friends for dinner. I have "overnights" with my granddaughter, and sometimes we all go on outings. Always an artist in the background, I got hooked on creating fused art glass, and set up a studio in my basement. It's a passion with a long learning curve, and a lot of satisfaction.
I feel very very fortunate. My life is different from what it might have been, but it is rich and rewarding. Since I lost almost all my middle years to Lyme, and the last time I felt healthy was my early 40s, I have had to learn from others what is "normal" for someone my age. I'm not too far off what other active women are. I still have some limits: I still deal with some leftover CNS issues, including migraines, but they are managable with meds.
I get tired, but it is a normal tired, the kind you get over after a good night's sleep. I have not experienced that deep Lyme exhaustion for a very long time. Nor the brainfog. Just the normal kind of gee, where did I leave that? or the odd word that escapes me. What I experience now is the normal sort of thing my never-Lymeie co-workers experience (even people a lot younger than me!).
I am not "cured". I have been on abx 3 times so far. It is possible that periodically I will need to go back on antibiotics for a while. But I am well. So far, each time I've gone back on abx, my baseline has gotten higher, and I have gotten better than I was before. The remaining CNS issues are even starting to resolve. So maybe the time will come that my immune system will be able to do it on its own.
My LLMD is holistic, and uses naturopathic and oriental medicine as well as alleopathic. So a very important part of my treatment all along has been to rebuild my immune system and help my neurological system function as well as possible. I take vitamins, minerals, and several herbs to help with that. I exercise, lift weights and do a sort of Tai Chi (I'm not very good at it, but I try).
Most of all, I have learned to set priorities in my life. What is most important to me is keeping peace with mysef and with all that is around me. Not holding on to stress or anger. Laughing at myself. Doing what I can, even a little, to help make the world a better place. Sometimes something so simple as waving at a neighbor, giving way to someone in a hurry, fostering a homeless mama cat until a home can be found for her and her kittens. (On my mind right now, because I can hear the thunder of 16 kittie feet over my head.) Listening to someone who needs to talk. Teaching other people about Lyme.
And remembering to cut myself some slack! I get to make all the mistakes I need to!
Hugs to you all. Dayle Ann
PS: my new tag line is " ...almost basically together situation." unknown quote from somewhere
Posted by bettyg (Member # 6147) on :
Dayle Ann, what was your nickname as I went to read your story and could not find it?
Thanks! So happy you have recovered so much from your lyme! Thanks for sharing your story w/us all. Bettyg Posted by Dayle Ann (Member # 1657) on :
Same name. The original post has 4 pages, and I am on the top of page 2. I was so excited at the time at how much better I was. It amazes me to read it now, knowing how much further I have come. I hope my story helps people not to give up. I am still experiencing miracles.
Hugs, Dayle Ann
Posted by jif (Member # 9215) on :
Daryl Ann-
thank you so much for sharing your story and thoughts!
jif
Posted by Melanie Reber (Member # 3707) on :
Thank you for making this a "stuck" topic Lou...and thanks also to those of you who have added your stories of success.
Knowing that our triumphs come in fits and spurts and increments...
IF anyone would like to reply to or change a reply to the original thread...
Boy do I want to be on this post Still treating since March 2001 now Sept 2006 still fighting. Iam getting tired wont be back here until cured. When?God Knows
Posted by kam (Member # 3410) on :
Tree Patrol...I too was finally dx and started treatment in FEb or March 2001.
I too am looking forward to when both of us are on the success story post. :0
Posted by Virgil and Mary (Member # 9602) on :
It does seem that Virgil is symptom free now and therefore qualifies for this post. He is now working full days (for a retired person, he is busier than ever he worked) again helping his mother, getting in wood and taking care of the garden, moving trees and doing odd jobs for a little extra spending money.
At the beginning of this summer he couldn't sleep, walked the floor all night in pain and could barely drag himself around during the day. What a blessing to have him back to full power.
We attribute his success to 3 steps-sea salt in large amounts for 10 days, then homeopathic preps for about 2 months and all the while large amounts of Glyconutrients, Phytonutrients and Plantsterols, to keep up his strenght and immune system while fighting the spirochetes.
This site has been a blessing to me to be able to see what this disease has done to other people. As a nurse, I had no idea what Lyme was all about. You all have educated me and I was able to encourage Virgil.
Thank you all for taking the time to help newbies. I know I will continue to frequent this site and contribute what I can. Hopefull, I will see more and more of you on this thread.
God bless you all.
Posted by HaplyCarlessdave (Member # 413) on :
Click here for my general lyme experience. So far, it's lookin; pretty good. If I hadn't found Lymenet and kept on going back to the 'conventional' ...'doctors'..., I would no doubt still be sick. I had enough relapses and knew little enough about lyme at the outset to absolutely and totally negate ANY KIND OF 'placebo effect'... It is a fact- we're talkin, FACT, that a substantial (I'm not at all only case I know of with this kind of experience) number of instances of Lyme disease can be cured through extended treatment with antibiotics at high doses. It is possible that some case may require additional therapies; at the very least, these speed recovery and help one rebuild more quickjly afterwords. I have a friend who was greatly helped by 'Rife'machines, for esample. (I didn't use these, but took many supplements and saunas.
Another thing that I believe can help is meditation and "prayer", as long as such is truly helping to focus one's mind and life energy on eradicating the diseases and achieving wellness. That was a huge factor for me. And support from people is very important, too. If you're in a space where support seems hard to come by, it's worth putting some thought into finding this support. I was greatly helped through meeting others who were fighting lyme too, here in Ithaca and nearby cities. Lymenet was a great source of support and information for me as well; I strongly encourage anyone who can to support Lymenet in every way possible!
Prayin' for it all day, And fightin' for it all night, we need <a href="http://www.elyrics.net/go/t/Todd_Rundgren/just_One_Victory/">JUST ONE VICTORY</a>, it will be ALRIGHT! Best wishes to all who are fighting this horrible disease! <a href="http://www.myspace.com/bluecayuga">DaveS</a>
(***note- I tested this before, but now, either it's this ...'windows'... computer I'm testing, or the lymenet pages have been "downgraded" so you can no longer enter urls-- if the latter is the case you'll have to copy the addresses into your browser address space-- sorry about that....! (I'm apolegizing for the "downdaters", or whoever is responsible for this bug, I guess...)-- this is the one kind of "downgrading" we DON'T need, folks!)
[ 03-18-2009, 12:20 AM: Message edited by: HaplyCarlessdave ]
Posted by HaplyCarlessdave (Member # 413) on :
Oh, hi again folks; I just checked my last post, and I see that the link is dead.... But I was still able to find these inpiring song lyrics- and posted 'em in a private hidden web-space just for you! HERE is the link...-- hopefully that will work. You can probably hear the song if you do some googling, etc.- it is good and inspiring, too. DS
Posted by HEATHERKISS (Member # 6789) on :
posted 27 September, 2006 10:37 PM
Yipee! Bill is going off all the meds except for lipitor.
So we are hoping this is it!!!! If he stays symptom free all month he might be done with treatments for now.
Tune in next month. Hopefully it will be his last visit w/ Dr. S
Yipee!
-------------------- HEATHER
Posted by treepatrol (Member # 4117) on :
I put this link at in top in Newbie Links Page 5. Success Stories Posted by Jenne03 (Member # 10482) on :
Hi fellow lymies,
I am so glad this topic is here. I remember when i used to come here looking for help and I always liked hearing the success stories. There is hope out there.
Gosh I am not sure how long ago it was for me ..I think about 5 years ago. I was living in Southern NJ. I was sitting down watching tv and felt something . Sure enough it was a tick and this was in November! I pulled it out. Well the site was very itchy and I went to the doctor because I wanted it documented. See, I had an angel back then. There was a woman I met in an online chat room. I always kept in contact with her. She has lyme and would tell me all about what was going on with her. I didn'thave it at this time.
I told her I found a tick and she told me to go the doc. The doctor told me to watch for a rash and flu-like symptoms. Within two days, I had a sore throat. I didn't put the two together. I just thought I had a cold. Then, the left side of my face went numb. Thank god for this symptom. It was a scary symptom and made me go look on the internet. I googled facial numbness and received numerous hits on Lyme. So I went back to the doctor who reprimanded me for looking it up on the internet. She told me the "worse case scenarios" are always on there and make people think they have something they don't.
She put me on a ten day antibiotic treatment. Within days, I felt 100% better. My prescrip. ended and within days I felt terrible. I had burning in my back. My legs went numb off and on. I always described them as "feeling like they didn't want to work". I went back to the doctor who refused to give me antibiotics. I told her "But I felt better on them, and as soon as it was done, I got worse." I also explained that to me it made sense...on antibiotics =felt better..off=felt worse..i didn't understand what the problem was. She said we had to do other tests.
So thousands of dollars later...just like you all..they couldn't find any other explanation. My Western Blot was normal...my pcr's were normal. So now I had either CFS, or a mental disorder.
My angel directed me to this site...where I found an LLMD and tons of support. I went to the LLMD who treated me and tested me. I came back pretty positive. My tick was also the one with the white dot..which my doctor refused to believe ..I think it was the Lonestar tick?
Anyhow I have moved and been to another LLMD who continued my treatment. I was so close to remission...only symptom left was floaters. Then I got pregnant. I was treated my entire pregnancy with antibiotics. When my daughter was born, everything was fine and I felt wonderful.
To this day I am STILL in remission! Stress has not made it come back. Sometimes I think with all my allergy problems and sometimes my back burns...that maybe it's coming back..but so far so good. It could also be that I am getting older!!
My daughter was fine up until about 8 months. She started screaming in her sleep. It was obvious to me that it was a pain cry. At her pediatricians , I mentioned it since it got worse and worse. She would cry most of the night and arch her back. Her doctor told me that she was manipulating me and to go get a book on how to get her in her own bed to sleep. She slept with me while this was going on so I could keep an eye on her.
I went home and cried that day. I knew he was wrong..but had no idea what was wrong with my baby. Then she ended up getting an enlarged breast bud. The dr. called it premature thelarche and said it was normal and would go away. It didn't . When she was about 1 or 2 I insisted on a specialist. We were sent to an endrocrine doctor who was quite aggressive and listened to me.
I told her I knew my daughter was in pain and she would hold her back. The gave her an ultrasound and we found she had ovarian cysts. They said it seems she might be going through premature puberty. But she didn't fit the profile. Her doctor was highly confused. She had an mri. This showed a pineal cyst on her brain. I was so scared. But then I started putting it together. Cysts? I remember a lot of lyme patients had those. She was only two with cysts. She also started to go through a cycle. One week out of the month, she was unbearable. So grumpy and would cry. It was almost as if she was having her time of the month...which is exactly what was happening without the period. The cysts were giving her an influx of estrogen.
I took her to my LLMD..who tested her and she came back positive. Infact she was cdc positive. WE got her on antibiotics and she is doing ok right now. Her endrocrine doctor is following her and might even write a paper. She says she has a couple of kids who were l ike my daughter...and didn't fit the "profile" for precocious puberty...she wonders if it could be lyme for them too. My daughter does still have some problems..Her tube in her kidney might be too short, she has already had her tonsils out..But for the most part, she doesn't have pain anymore and is a happy well adjusted kid.
I am so sorry this is so long. I just wanted to share my story to give others hope..as I have had from visiting this site. I haven't followed lyme in a little bit..but recently came back to find out the latest and sign the petition. I can't believe it is still so bad..I wrote Oprah today...trying to get anything out there about Lyme. I will keep writing my letters..
Even though I am in remission...I am still a lymie..and I support all of you and wish you the best. I will do what I can to help get this topic out in the mainstream!
Posted by CaliforniaLyme (Member # 7136) on :
My 9 year old daughter has been 100% in full remission for over 4 years now- and I am at 99.9% for 5 years now. Life is good*)*!)*!! Sincerely, Sarah in CA
Posted by JeffM (Member # 8919) on :
It all depends upon what we perceive as "success".
I am so glad to read about the "full successes".
My LLMD wants full success -- no more symptoms. I am happy to define success as: 1. Being able to function better, for at least part of the day. 2. Being able to work some and make a little money. 3. Being out of a wheelchair and able to travel. 4. Getting brain-clear again.
For me, this is a double-edged sword. At some times during the day, and on some full days, I am still very, very sick. But during other times, I can function, read again, walk some, and manage my pain.
I am grateful for this, and if this is the way the rest of my life went, it would be OK. I prefer to look at any improvement with tremendous gratitude. I am also grateful that this disease has taught me much more profoundly how to love and take care of myself.
So all I am saying, or adding to this thread, is that "success" is relative, and if we only define it as full cure / remission, we could get discouraged. And part of my treatment is to try to not let those discouraged thoughts come in and take over.
Posted by CaliforniaLyme (Member # 7136) on :
I agree with you Jeff!!! I define myself as a success although if I go off abx I go to heck wihtin a week!!!!!!!!!!! But on them I am 99.9%!!! I am so grateful for what I do have!!!! So grateful, because life had become unbearable. It was horrible always being in pain and being out of control, waiitng for whatever new gruesome thing my body began to do or not do. Boy am I grateful to have no pain- and to be able to walk and do all those nice things*)!*!)*!)!
I may not be cured or in reimssion like my 9 y ear old, but I never ever EVER believed I would get this quality of life again. It is immensely pleasurable to do simple things- still, on bad days like everyone has, mentally bad where I am grouchy I mean, I just clasp my fist and go, "How dare you not be grateful for that?" because I could not close my hands they were so hard to move by the end- and everything else is nothing next to walking- and eating- and not having pain! ANd I am so glad to not have coffee cups fly out of my grasp and smash on the ground!!!!!!! Boy!!!!!!!!!!!!!
I know there are people reading this who are barely making it through each day and who think about offing themselves- and I just want to tell you that I truly did NOT believe that I would ever ever get better. I had given up 5 months into Rocephin. But after 6 months on, every day I began to get better and better and better- and I stopped having seizures- and stopped having fibromyalgia- and stopped having fatigue- and chorea- and I began to STOP GETTING weaker-
But I understand the desire to escape- it is so draining to be monitoring ones physical body all the time- to be perceiving constantly THE BODY in all its mayhem and torment- the BODY in charge- dictating pain here and control loss here and weakness here- and where are you? Where did that person who laughed and enjoyed life go? Into the pain and the weakness and the fog of sickness... But you are still here, and there is hope!!! I have seen people in wheelchairs walk again with Lyme treatment- more than one!!!!!!!!!
Honestly, the muscle strength took MONTHS to get even a tiny bit stronger, but I was so weak at the end I had to pull myself out of bed by using the dresser, and lurch from piece of furniture and wall to the bathtub- and then my husband would have to help me in because I was physically incapable of lifting my legs into the bath- and it would take me half an hour to cross the house while lurching and falling and stopping to rest after a few torturous steps because it was so SLOW and I was so weak- and THAT would exhaust me for an entire day- visiting the doctor was a nightmare- and finally even that was too much- and NOW I can run- it took almost a year to be able to run again, getting my strength back was SO SO SLOW, it tooks MONTHS to be able to go up our driveway to get the mail, MONTHS of slow slow progress, shuffling here, shuffling and lurching there, so slow... and now I AM LIKE NORMAL and have been for YEARS- but I know what this means- to walk!!! to run!!! To be without pain!
Yes, it is success!!!
I could live in fear so easily- because certain things that happened with my body scare the heck of of me and can happend again at any time- but I just try to live in gratitude of the blessings I do have- because I know my future may not be as long or as healthy as I wish... so now is the time to enjoy my little daughters and my husband and my life!!!!!!!!!
I love not being in pain. I love not falling!! I love not watching my left hand dance in chorea. I love being able to walk, to run, to clench my hand easily- so easily- and I never knew before Lyme that these things could recede like water, how they could be taken so easily, so beyond our control- I remember the first time I slurred when I spoke and I sounded like I was drunk- after years of never even drinking!!!!!!!! And yet again my body had betrayed me, et tu my voice? Even my voice- it took everything- but IV Rocephin gave evrything back!!! Things wihch I never dreamed I could get back!!! I just wanted no pain I didn't even believe I would be able to run again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
THANK GOODNESS and THANK OUR LLMDs!!!!!!!!!!!!! Very much a success though not in remission, Sarah
Posted by pmerv (Member # 1504) on :
I think I'm a success story, though I'm not 100%. I think a tiny bit of antigen remaining is enough to drive the immune response, once it has got started, and if you have the wrong genes, you might continue to have arthritic problems or other problems. Which is what happened to me.
I was finally diagnosed in '87 after 10 years of illness. I had ankylosing spondylitis, where the arthritis focuses on the spine/neck and gradually, painfully inflames and calcifies everything. Once I got treated for the Lyme which we believe triggered it, the process cooled off and slowed way down but did not entirely stop. I still have some joint "issues."
Thank god for my LLMD. Before I met him I thought I would die young. Three years into the treatment I could finally start planning my life ahead. I kept improving even after that. Now I put in a more than full day! I'm very busy and feel great even though in the past few years I had tendons in my fingers rupture and also a torn rotator cuff. So I do have musculoskeletal issues, but they don't slow me down too much.
Nowadays I love to sneeze. I remember when I couldn't sneeze, it hurt too much. I'm on maintenance doxycycline and as long as I am pretty faithful, I am fine. Luckily doxy is cheap and safe.
I feel like I am one of the lucky ones. I love my work and although my life took an unexpected turn, I have met the most wonderful people and my life is happy and very rich. I am glad that I now have the opportunity to help other people find help, and also to try to work for solutions that will help my children and grandchildren. Phyllis
Posted by Melanie Reber (Member # 3707) on :
Blessings to each of you who have contributed to this post with your wonderful stories of success!
And blessings also to those who are reading to gain a sense of hope...
Keep fighting, keep trying, keep being grateful for the little things in life.
That gratitude will see you through during the hardest of times...and will elevate your spirit even further when the pain has at last lessoned.
I thank you all, Melanie
Posted by CaliforniaLyme (Member # 7136) on :
I just realized I should add someone to the success list and that is Kelly B!! And her daughter. Kelly was bit on the head and was then sick for 9 years after tick bite. She was really sick and was on tons of pain meds. She went on IV Rocephin and after 2 years she was in full remission. Her daughter had been born with Lyme and Babs and she got well after a much shorter time of treatment. They have both been in full remission for over 5 years now and lead a busy, active life, travel a lot!!!!!!!!!!
There is also Rick R who was in treatment for about a year and a half and is in full remission and jogs miles a day.
And the majority of the people are like me, they are 99.9% and stay on abx, but decline if they go off. That seems to be common with Santa CRuz Lyme! But we have a bunch of people who have returned to work after disability and lead normal lives- like Patti and Lori and Kari!!!!!!!!!!!
It is a blesisng to watch people get better- as long as they stick with antibiotics and don't go chasing fad after fad they DO GET BETTER every time. Every single person who has come to our local group has gotten better if not 100% with longterm abx- the only one who didn't was this one guy who killed himself but he had not been in treatment very long and had given up hope because he was so bad-
what is really nice is when someone comes in with a cane or wheelchair- so far every person has lost those devices with treatment!!!!!!!! it is nice to watch someone stride vigorously who came in like that!!!! and we group members see the progress long before they do-
"Hey X you're finishing a whole sentence!!!"
and every one of us who has improved to the point of being able to live life with enjoyment again is a success story in my book*)!!!
Posted by leogrl54 (Member # 10770) on :
I love success stories!!
have not been as sick as some, sicker than others.
needed to hear thoase stories. just want to FEEL better.
some of my symptoms are clearing, but i stil "just don't feel good"
i'm a leo and my personality was such. hopefully i'll be able to be that person again.
again thanks for the stories
Posted by CaliforniaLyme (Member # 7136) on :
Kari Mayne
I contracted Lyme in February of 1988 - thirteen years ago. I was not diagnosed with lyme until August 1999, after being sick for 11 years (and having a stillborn child - lyme of course.) Before I was finally diagnosed with lyme I exhibited all the classic ALS symptoms, and had lost an uncle to ALS. Thus - the doctors thought they had an ALS diagnosis nailed down tight. Only through my stubborness and refusal to accept the ALS dx did I research the internet and find an llmd. My first visit, even without labs, the doc - God bless him - said I had the worst case of lyme he had ever seen at that time. Subsequent lab tests ELISA and Western Blot both positive.
The symptoms which are now COMPLETELY GONE are: no more severe muscle cramps no more fasciculations no more numbness in face/tongue/forehead I can swallow without difficulty now no more slurring of speech no more limping and severe weakness in legs no more ringing of ears no more confusion/memory loss/lyme fog/depression no more debilitating fatigue I can now pick up pennies off the floor - fine motor skills are back in hands I can lift my eyebrows now I don't choke on liquids Bright light doesn't hurt my eyes anymore Reynaud's syndrome is better No more intense heel/bottom of foot pain No more TMJ or tooth pain No more running into walls, doors because of poor balance or legs "giving out from under me" I can drive without getting lost No more hallucinations I can count to 10 I can raise my arms to shampoo my hair No more pain in joints or numbness in limbs
Of course, there's more symptoms...but you all know what they are. These were just the ones that plagued me most. Everyone, of course, responds differently to medication and recovers at different rates. But, I have no doubt that all of you will get better over time. Probably the thing that helped me most is the Bicillin shots. Behaviorally, plenty of REST and the determination that I would not identify myself as a "sick" person kept my attitude positive and my spirits up even when my body argued the opposite. I have lyme, lyme doesn't have me kind of thinking.
I see a great spirit of helpfullness and positive thinking in these emails which makes me want to respond. In various lyme chats and online discussion I have sometimes encountered "poor me" kinds of attitudes. NOT IN THIS NEWSLETTER - Renee and Sean you're awesome! I haven't really participated in any support groups or discussions such as this in a while. Since I've gotten better, I don't like to be reminded of my lyme nightmare (even though I am still taking Bicillin shots twice weekly.) But you people are so sharp and caring I felt I needed to tell you a good news story. Bicillin shots have almost cured me. Been taking them a year now...99% of my symptoms are gone. Lyme can be defeated! I started seeing improvement (dramatic) in a couple of months after I started with the Bicillin shots. My doctor was amazed. It's wierd, you sometimes don't notice that you're getting better because THERE ARE SO MANY, MANY THINGS that are hurting or not working right. Then, it will just come to you "Oh, I didn't slur my S's today" or "My left hand doesn't feel as stiff and numb as it did." or "The sun didn't hurt my eyes today." Sometimes it takes awhile to notice because to you the changes seem small, but they all add up. The biggies for Mike - like getting out of bed unassisted - take longer because there are more muscles/nerves/joints/etc. involved in doing them. Each muscle/nerve/joint has to heal (and there are many, many of them) before the motion gets easier. That's a lot of healing. That's why you'll see the small changes first - such as ears stop ringing. Not as much is involved. My response is that Mike is probably improving dramatically, but it may not be in the areas that worry him most.
Regarding the Bicillin shots. Yes, you will find hard lumps at the injection site. There's no way to avoid it. They will eventually get smaller - but not go away. You see, it's scar tissue under there. Every time you get a shot, it damages the tissue. These shots are powerful. You will experience times where it's very difficult to insert the needle because you'll run into a lump of scar tissue built up from continuous injections. It really hurts when this happens. Yes, sometimes I have bicillin leaking back out of the injection site. It doesn't worry me. It's usually because I got active too fast before my body absorbed the Bicillin. Just slap a bandaid on their and wait a couple of minutes before attempting to move.
I sympathize with dilemma re: childcare when you can't get out of bed. My doc told me to put my 2 1/2 year old into daycare last May. This month - we took him out because I am well!
Posted by CaliforniaLyme (Member # 7136) on :
1 From: halgaard - view profile Date: Mon, Jul 2 2001 1:24 am Email: [email protected] (halgaard) Groups: sci.med.diseases.lyme Not yet ratedRating: show options Reply | Reply to Author | Forward | Print | Individual Message | Show original | Report Abuse | Find messages by this author
I was dx'd definite ALS 3/00 and tested positive for Lyme on ELISA and Western Blot 2/01. On 4/18/01 I began an aggressive therapy for Lyme. I started a six week course of IV Rocephin followed with oral Flagyl 500 mg tid and oral doxycycline 100 mg bid. My ALS symptoms started to deminish at day four of IV Rocephin with spasticity, cramping and virtigo disappearing. Within another three days clonus in ankles and jaw became almost non-existant as well as speech problems and swallowing difficulties. Prior to IV Rocephin the spasticity and cramping kept me on my butt. My diaphragm would cramp violently if I sneezed. I also fell a lot prior to IV and managed face plants most of the time. I have not fallen once since abx. I alos changed the oil and filter in my two cars and hand washed them.
During the six weeks of IV Rocephin my ALS symptoms were mostly gone. I was left with the muscle wasting that had occurred since onset. There has been no new wasting as far as I can tell. Being a smart-*** , I felt there was no need to combine oral flagyl and doxycycline, so I laid off the doxy and started with only the flagyl. Within four days of just oral flagyl my symptoms all returned, spasticity, cramping and clonus. I started doxy and within 24 hours those symptoms started to disappear.
It is now three months since the start of abx. I have no spasticity, cramping or clonus. My reflexes fall within normal range, they had become quite hyper. My FVC went from 68% prior to abx to 88% now. I have minor foot-drop in the left ankle and the right has none. Prior to abx I had AFO's for both feet as dorsaflexion was gone. My leg strength is increasing as I am now able to walk two miles/day and continue to shave time from the miles. I could not walk one mile prior to abx.
Basically, what I am left with is a pure lower motoneuron syndrome that has left me with atrophy. My left hand, arm, both shoulders, my neck and left leg have significant loss of muscle. My right leg has rebounded the best as it was not too affected. My right hand and arm are affected but they are also rebounding nicely.
Take care Dave Marr [email protected] Posted by CaliforniaLyme (Member # 7136) on :
ixode wrote in message <[email protected]>... >Does anybody know of anyone whose had lyme more than 2 years who has >been cured with abx??
I have had Lyme and Babesiosis for many many years. AFter 6 years of orals (using some creatively), Babesiosis treatment, some HBOT, and alternatives,I am now in a remission that is over 2 years. I have a few symptoms that come now and again, but I am a fully functional person and am doing better than I did in my twenties in many areas.
I don't speak of cure at my stage of the game only remission. That means I still have the diseases in me. I remain diligent about my health and excercise programs - I work hard at maintaining this very good state of health because I know it can come back.
> My old lyme doctor gave up treating late stage cases because he >couldn't make them well. He was also catching flack from the powers >that be because of administering abx beyond limit of CDC guidelines.
Yes, my doc was put out of the Lyme business back in 1995. From that I learned how hard it is to work at getting your health and medicines for it. Hard doesn't even describe it. At first you are so shell-shocked from losing your doc and others who will not touch the disease because of that, that it is an event that changes your life. Of course, that explains the main reasons for my outspokenness.
>Since they weren't getting better, he stopped treating them to protect >his license.
yes, it is getting worse.
>Everyone I've ever talked to whose been sick 2 yrs or more is still >symptomatic, in many cases never recovering even if still on the drugs.
As a support person, I can tell you that many people do get better and lead good lives again. But if the Lyme bug bit you hard, it is wise no matter how well you seem, to remain diligent in the future for any relapses.
Rita
Posted by TheCrimeOfLyme (Member # 4019) on :
I'm finally going to add my sucess story. I got sick in 2002 and went undiagnosed for 9 months. Little did I know that AFTER i started treatment for what I thought I only had for 9 months, that "other symptoms" that i had for YEARS would disappear as well. I never linked them.
I had SEVERE headpain, head burning, neck pain, back pain, face pain, jaw pain, seizures, spurting nose bleeds, "jumpy" muscles, buzzing and twitching, SEVERE vertigo, SEVERE pain in my eyes, throwing up and at times neurogenic bladder. I couldn't think for the life of me ( the fog), would get ringing in my ears, my eye would twitch, you name it, I had it. Swollen glands, off and on sore throats, shoulder pain, etc.
At my very worst, right before I got diagnosed, I was having periods of temporary paralysis. I will never forget the day it first hit as I had no clue what was happening to me and thought for sure I was going to die.
I started my abx in April of 2003, I believe, if I am correct.
I did amoxycillin 3000 mg for six months. Clindamycin and quinine for six months rifampin for 3 months 600 mg a day Biaxin and Mepron ( biaxin 1000 mg a day and mepron I literally had to take only 1/4 tsp as it made me VERY VERY suicidal and MEAN) doxycyline for 3 months Ceftin for 2 and then bicillin shots for over a year. This in
addition to the diflucan, nystatin, vitamin b12 and host of probiotics and supplements that I took. I also did artemisinin at a VERY low dose 100 mg per day for a while.
I did take a year break on abx due to leaky gut syndrome and treated that homeopathically.
In addition to the abx, I also did: Sauna Lemon water detox out the wazoo Chiropractors trigger point therapy ART testing and followed all that I could on that Lymphatic drainage bentonite clay detox baths "skin brushing" emotional freedom tapping Rife Allergy desensitization and much, much more. Liver flush
I tested positive for: Strep in the blood Mycoplasma pneumonia Lyme of course ( even CDC positive). The PA Health Department called me and basically begged me to "admit" I didn't get it HERE IN PENNSYLVANIA! Bartonella PCR positive Erlichia came up positive once I was tested for a host of viruses and only came back as having EBV in the past
Throughout all of this, my immune system was tested only twice but registered "in top health" ba ha ha. But in any case, it was fighting big time.
To be quite honest, the things that helped me the MOST in this order is:
1.) The amoxicillin took away my brain fog in two weeks flat. Yes, it returned from time to time BUT never like it did previously, and it was my first abx.
2.) Leaky gut treatment homeopathically helped me VERY much. I had leaky gut so bad it gave me orthostatic hypotension. I did NOT have it previously at any point, but developed it due to all the abx in my system.
3.) These aren't in order- but ART testing and allergy desensitization turned my world and my HEALTH around. If I hadn't went that route ( and I was 2 and a half years into treatment), I doubt I would be well today.
4.) Liver flushes. ( this actually kick started me losing ALOT of weight. I was 155, now Im 128 and digging around looking for smaller jeans "pre lyme" in my closet).
5.) Bicillin. Bicillin did the trick at pushing me into remission.
6.) Diflucan- turned my life around as well.
THIS remission for ME: I don't really flare anymore but I still do get desparately ill around my period, for one to two days. I actually know it is coming because I will sweat under my underarms BAD , and soak through my clothes. NOTE:
PRE lyme treatment, I had this "hyperhydrosis" for 10 years STRAIGHT. Now, I have it once a month. So I KNOW its something that I did that helped it, so I have to keep chugging on.
I can pretty much eat what I want to , but my body does not tolerate pasta, soda/pop of any nature or tomatoes. Potatos also make me gravely ill. Food actually INDUCES brain fog.
I just graduated finally and fully two weeks ago from college. My last day there, a gift was given to me- I felt COMPLETELY normal and the orthostatic hypotension didn't kick in at ALL.
I still suffer from orthostatic hypotension, some sleep apnea, and period flares as I said. I STILL have some "neuro rage" left and my vision I believe is permanently screwed up thanks to lyme.
I have undergone NOTHING and I do mean NOTHING but stress this ENTIRE year, from getting engaged, to him cheating on me 17 days later, to my sister stealing money from me, to contemplating moving, etc. And I haven't relapsed. i also had a concussion in early june. I actually DID RELAPSE over that but bounced back in under a month.
Keep on going people, it will happen for ya. It took me 3, almost 4 years) and mind you a year off from abx, but Im still here.
In the end, it was the alternative/adjunct treatments that saved me. The abx were a necessary evil though. I wouldnt have made it without them.
But now I mainly sweep up their afteraffects.
Wishign you all happy holidays!
Posted by savebabe (Member # 9847) on :
I got a great report today. After years of being sick this is the best I have felt in a long time. I would say I am 90% better and I continue to keep improving. I would just like to encourage everyone who is trying to overcome this horrible disease to hang in there, it does get better. Six years ago I almost died, today I am planning on starting a family this summer. I am finally starting to laugh and enjoy life again. Posted by docgwen (Member # 10928) on :
Lyme disease has been a part of my life for 12 years; spending many years camping and vacationing on Long Island, New York. As with many Lyme victims I have suffered not only with the typical Lyme symptoms but bizarre symptoms that are a direct result of spirochetes creating havoc in my body. I have been on oral antibiotics for over 18 months now, with little positive results or relief of symptoms. Just 4 weeks ago I tried a mangosteen product. At this point, I will try anything just to feel better. The first two weeks were horrific with herxing, the most severe thus far. Then after two weeks I started to feel better. I have been using this product for 4 weeks and it is unbelievable how fantastic I feel. You must know that I am aware that mangosteen may be simply helping with my symptoms and possibly not destroying spirochetes. I have been conducting a great deal of research trying to find the effects of xanthones and mangosteen on Lyme. One of the findings is that mangosteen has a very effective anti-inflammatory agent and I do believe that has had the greatest impact on the improvement of the pain in my body and the ability to walk with much improvement. Xanthone is a powerful, life-enhancing substance that is a natural antioxidant more powerful than many vitamins. Xanthones have been the subject of intense research for several decades. They are found in a select number of rain forest plants, but nowhere are they found in more abundance than in the pericarp or rind, of the Mangosteen fruit (Garcinia Mangostana). Antioxidants function as a balance for free radicals in the body. Free radicals are potentially harmful, yet oftentimes natural substances in your body that, when left free reign, build up and cause diseases like cancer, heart disease, and more. The xanthones function to travel through your body, literally mopping up the free radicals on their way, leaving your body cleaner and healthier than before. Some of the most important xanthones found in mangosteen include: Alpha-mangostin Beta-mangostin Gamma-mangostin Garcinone Garcinone A Garcinone C Garcinone D Mangostanol Gartanin These, among other xanthones, have been touted by independent researchers to have properties to include anti-inflammatory, anticonvulsant, anti-allergic, anti-tumor, and anti-platelet, to name just a few. It also has been found to be anti-fungal, anti-viral, and anti-bacterial. This could lead one to believe that there might be a possibility that mangosteen can be effective in eliminating spirochetes. All I know is that I am substantially better after just 4 weeks on mangosteen. If you want more information or just to talk, you can email me. Dr. Gwen Larson Morris
quote:Originally posted by Lou B: Hi LymeNet Users,
One of our users, Nimzovich76, suggested I create an updated / featured (sticky) Topic containing Success Stories. Great idea ... implemented here!
There is a series of Success Stories, compiled from January 2004 through August 2005, that are on the LymeNet Flash but can not be replied / appended because they are in the "old" LymeNet Flash UBB data base. Those stories are here: http://flash.lymenet.org/ubb/Forum1/HTML/022173.html
In order to post current Success Stories, please "reply" to this current Topic because, as I stated, you will not be able to reply to the above linked Topic ... it's just there for historical reference so you all can read the older Success Stories.
As Melanie Reber originally stated: "Many come to LymeNet desperate for answers and looking for some glimmer of hope...
Thank you to each of the contributors...
Your words of inspiration are more valuable than you could ever know.
Please feel free to add your own stories, so that we all may hold on to hope through our own journeys."
Posted by TrueCornsilk (Member # 3036) on :
hey all. i used to post here up until maybe four years ago. i'm feelin better since then. since there's new people and whatnot, i thought i'd recount a few things that happened with my experience with the whole deal, and what i've been up to in college.
got diagnosed in 1998 - i'd just turned 15 (i'm 23 now.) missed 2 years of high school from it, 3 months rocephin, 3 months claforan, 3 months doxy did nothing. ended up being cured with a fourth treatment (7 months.) i was still pretty frazzled for a few years after that. got back into high school, 17 years old tryin to pick up where i left off...eh. not fun at the time.
ended up spending 6 years in high school...now i'm symptom free and in control of my life.
buy now and we'll include the following perks of a healthy life: regained walking ability regained speaking ability (including moderate to fabulous social skills!) regained reading ability palpitation-free heart ability to feed myself ability to swallow liquids nightmare-free sleep obsessive compulsive disorder gone regained ability to relate to family lack of violent outbursts
after all is said and done, i consider myself a patient person. to be honest, i don't think about it much these days. i went to the university of pittsburgh - actually i'm here now, in my apartment typing this. it's kinda ridiculous how much has come my way ... i have trouble believing how big it really is. people tell me i'm the most mild mannered person ever, and stuff like that. (i don't know if i'd always agree on that one, but you know.)
i read a lot, ride my bike all through winters in pittsburgh, and i've gotten into refinishing furniture. pick up the guitar once in a while. i help my friends move cuz i have a station wagon (AVAST YE!)...hmm, what else? oh i've gotten back into acting again, here and there. i don't go out of my way for that though. spent some time (a summer) at uc berkeley. saw the white stripes there, the saturday after my classes ended. it was hott. i love renaissance playwrights. i furnished my entire living room for free, which includes a 27 inch telly and a futon.
in the last three and a half years since coming to college, i've been quiet about when i was sick - i needed some time under the radar. but now i'm beginning to feel like opening up to more people. i feel like i could do a lot, i'm not sure what, but why not give it a go? anyone know anything about activism in western PA / pittsburgh?
things are crisp.
Posted by bettyg (Member # 6147) on :
dan, thanks for coming back to post your SUCCESS story.
i've sent you my newbie links/advise with 1st page showing the 2 LYME PETITIONS going on!! Posted by JeffM (Member # 8919) on :
On a recent two week meditation retreat, which is the 8th one I have been on since sick over the last four years, I think I got to a new level of recovery.
After three days of silence and meditation, my pain level went from @ 8 (1-10 scale) to a 2-3. I titrated off morphine with no withdrawl, and was able to hike and do yoga for the first time in four years.
For those of you who don't know me, at this time last year I was bedridden, using wheelchairs to get around if it was more than a block, was very neurocognitive (could not read a sentence and make sense out of it), neuropsychiatric (having weird panic attacks and atypical depressions), and shaking like a person with advanced parkinson's.
This is the fourth "phase" I have noticed in 20 months tx.
The first was worsening due to ketek and ceftin. The next was improvement after 1 year abx orals and mepron (which just about killed my GI tract). The third was IV rocephin -- cleared the neuro cog and neuropsych stuff away almost completely. And the fourth has been ozone therapy, bee sting therapy, and the cumulative effect of mindfulness meditation and lovingkindness meditation.
I am able to work part time, take each day slowly, and can see that I might get up to 80% of my functioning back.
So if anyone is interested, my protocol looks a lot like Dr. Klinghardt's, much of which is posted on Better Health Guy, Scott's site.
A summary is: Antibiotics - orals Getting mercury out of fillings Change of diet -- see Burrascano, plus significantly less meat and sugar Chlorella (for binding biotoxins for elimination from system) Mepron (treating babesia) Colonics (for detox from biotoxins) IV Rocephin with biaxin Ozone therapy (ozone mixed with blood and reinjected) Bee sting therapy (currently up to 9 stings 3 times a week) Mindfulness, meditation retreats Ardent wish to get well Support of family and friends No Work for two years
So, again, I had / have a severe case. Not as bad as some of our ALS, neuro mimicking lyme friends, but still really bad.
The next step I think is to continue the tx noted above, and to add more easy yoga, walking, and seeing what my doctors think.
It looks like I have hypothyroidism. Apparently it is common in lyme. All I know is my temperature is 3 degrees too low, in the 95's, in the am and pm, and normal in middle of day. I thought my morning and night time fatigue were due still to brain swelling, but now I think it might be due to thyroid problems. We will see.
My daughter is not doing so well, but she is really only into @ 5 months of regular abx treatment, and does not regularly do the other self care things, particularly the simple one -- chlorella. We pray for her.
Just sharing a very dramatic and positive turn. Ifigure I have another couple of years to go. I wonder what I am going to do about cyst busters -- flagyl and tindi have been almost impossible to tolerate. I want to seriously try grapefruit seed extract.
Hooray. Maybe better health is possible!
Posted by hardynaka (Member # 8099) on :
I got lyme in June 2005. EM rash two weeks later, 2 weeks 100mg doxy/ day, rash gone.
By October 05, I was so sick, with neuro and arthric symptoms. I found lymenet then and my story is all here.
I got night sweats, light sensitivity, total exhaustion, hard neck, night terrors, tinnitus, heart problems, air hunger (extreme sometimes), pains on all big articulations (including vertebral column), pain on my liver, diarrhea, extreme chills, high temperature 'attacks' (when I had to lay down), scalp swelling, stabbing pains on the head, total brain fog etc etc.
I found no doctor to treat me initially. I took 10 days of amoxy 1,500mg day and most of my symptoms disappeared sometime in October 05. Just to return a few days later.
I live in Switzerland. The so-called lyme specialist from Zurich did nothing to me, despite 3 positive western blots.
In December 05, I begged the 'family' doctor for Riamet (anti malarial). 4 months of night sweats vanished in 2 days by Christmas time. In January 06, I got babesia symptoms coming back (a bit changed though).
I started with salt/C in October/November 05, then added Buhner's herbs in December 05, slowly.
In Jan-Feb 06, I dropped salt/ C due to high blood pressure. I continued on Buhner's herbs only, but couldn't really ramp up.
In February and March 06, I was spending most time in doctors, hospitals and emergencies. No hope, no diagnosis. I went to Belgium too to try to get help. None.
In April, I found two ART practioners (following Dr.K's line of treatment, recommended by Gigi a lymenet member who cured herself with this method). It was great help. One was a doctor, the other a naturopath. Since then I was treated with homeopathy, the microcurrent (KMT 24) plus Buhner's herbs. I also took out my amalgams and started a metal detox program.
Slowly, but steady, I improved, with ups and downs, but the general curve going upward. By December 06, I had lots of energy, I could drink wine, could stay up late nights without much fatigue.
The naturopath treated my scar (from cesarean), taught me to do MFT tapping after herb intake, treated intestinal parasites and brain parasites twice in 2006, and helped immensely with metal detox and detoxing in general.
I also did some lymph drainage massage and it also worked well for relief.
I guess the tick pathogens I had were 'only' borrelia, babesia and bartonella.
Bartonella symptoms appeared more clearly only in the end of 2006 (without reinfection that I know).
In March 07, I found a part time job, that's where I am. I don't feel cured, I'm still on maintenance protocol (knotweed tea 3x day, cats claw very low doses) but that's all (immunomodulators). I recently added eleuthero extract, and I have been taking a variety of bee/ hive products.
I'm still treating an ancient fungal infection (skin), pre-lyme, but even that seems to be finally going. I did Rizols, now I'm on Pau d'arco tincture and frozen garlic again for that.
I feel almost normal, energetic, but still keep my diet (organic when possible, no wheat, practically no sugar, no milk derivates) and a few cleansing supplements (chlorella, magnesium, zeolite, some minerals, enzymes) plus the 2 Buhner's herbs above (just in case).
I'll keep these 2 Buhner's herbs until next winter, I guess. Probably add some astragalus during high tick season in case of reinfection.
I still have chills sometimes (I don't know if this is lyme or bartonela or funghi), but that's about all.
My whole story is scattered in lymenet's archives, protocol included. I'm now an active member of the Yahoo Buhner's forum.
I still would like to treat my jaw problems, root canals, but didn't do it for financial reasons.
So my path of healing was:
- Buhner's herbs (since December 05 until now March 07), in low doses, level 1 mostly. Andro being my magic herb for 13 months.
- lots of cleansing. Continuous and changing supplements/ herbs (except for the constant chlorella, milk thistle, enzymes, minerals).
- homeopathic support (following ART, to suppor each organ in stress like brain, lymph system, liver, intestines etc. I felt it helped a lot!!!); I did it since April 06 until a week ago, always through ART tests.
- amalgam removal and cleasing metals following ART and an experienced naturopath from Germany. The products she used were Phospholipid Exchange, NDF-Plus, Bear garlic, chlorella. I used cilantro tincture sometimes by myself or to rub.
- eating habits have changed as I eliminated wheat and all milk derivates (tested allergic through ART).
- ART tested for me Buhner's herbs amounts and many other things (it could 'see' if my body was toxic, where was the problem, where were the pathogens, which pathogens, etc).
- KMT 24 sessions. ART measured, sometimes. Other times, by 'intuition'. I used it not every day, not every week, it depended on what I was treated. Extremely useful for Gastro-intestinal parasites and brain parasites, in my opinion.
- tapping always after herb intake (to help heb absorption), and my naturopath treated some pshychological blockages with tapping too.
- Babesia: Riamet, Pc-Noni, KMT were my treatments. Symptoms vanished very fast.
- Borrelia: innumerous things. Mainly Buhner's hebs, but I also used Teasel tincture and some Chinese herbs as tea.
- Bartonella: so far, Rizols, KMT, Japanese Knotweed. I don't know if it's gone though...
I hope this info could be helpful. Selma
Posted by Ruth Ruth (Member # 11059) on :
Thanks,
I've got a new definition for your name: c.a.v.e = can actually verbalize (quite) eloquently (at times)
May your good days completely overrun those other days until you can't even remember what a bad day was like!
Posted by bettyg (Member # 6147) on :
cave, thanks for sharing your success story with us all! Posted by Melanie Reber (Member # 3707) on :
Thank you Matthew!
.......................
matthewgoss Frequent Contributor Member # 3167
posted 13 June, 2007 09:58 PM
I stopped coming around here about 4 years ago when I finished my last course of antibiotics.
But at that time I made a committment to myself and this community to stop back in at least once a year, simply to say YOU CAN BEAT LYME!
When I first starting suspecting Lyme in September of 2002, it seemed to me from reading all the posts here that I would never get rid of it.
Everybody said "those who are cured go on with their lives and don't post anymore."
I didn't believe that because I searched high and low for months and couldn't find even ONE person who was cured.
Since that time I have come into contact with DOZENS of people who are symptom free and have gone on with their lives.
It can be done! In December of 2005 I bought 7 acres of woods in the Ozarks and started building my own house. Last winter I cut down almost an acre of trees and stacked up over 10 cords of firewood. For anyone who knows how much work that is you know that if I still had Lyme that would have been impossible.
Matt
Posted by kam (Member # 3410) on :
Your name sounds familiar Matthew. Thank you for the update. It puts a smile on my face to hear that you have purchased land, are building a house and chopping wood. Posted by kam (Member # 3410) on :
Wow Cave. Just read your report. Yahoo! This is good.
Posted by bettyg (Member # 6147) on :
the below is NOT a lyme story, but an INSPIRATIONAL one I got on the email that is true! the photos will not show up, but his personal story is below.
we all complain about this and that, how would you like to "walk" in his shoes born with NO ARMS/HANDS NOR ANY LEGS/FEET!
Now we each can count our blessings for what WE DO HAVE LEFT THAT WORKS! I do anyway! Thank you God!
*********************
This young man is truly God's Blessing! When we think we have got it bad or life has treated us so unfairly ("Why Me")...
I hope Oprah does get him on her show...he could then touch millions of lives ***************************
My name is Nick Vujicic and I give God the Glory for how He has used my testimony to touch thousands of hearts around the world!
I was born without limbs and doctors have no medical explanation for this birth "defect". As you can imagine, I was faced with many challenges and obstacles.
"Consider it pure joy, my Brothers, whenever you face trials of many kinds."
...To count our hurt, pain and struggle as nothing but pure joy? As my parents were Christians, and my Dad even a Pastor of our church, they knew that verse very well. However, on the morning of the 4th of December 1982 in Melbourne ( Australia ), the last two words on the minds of my parents was "Praise God!".
Their firstborn son had been born without limbs! There were no warnings or time to prepare themselves for it. The doctors we shocked and had no answers at all! There is still no medical reason why this had happened and Nick now has a Brother and Sister who were born just like any other baby.
The whole church mourned over my birth and my parents were absolutely devastated. Everyone asked, "if God is a God of Love, then why would God let something this bad happen to not just anyone, but dedicated Christians?"
My Dad thought I wouldn't survive for very long, but tests proved that I was a healthy baby boy just with a few limbs missing.
Understandably, my parents had strong concern and evident fears of what kind of life I'd be able to lead. God provided them strength, wisdom and courage through those early years and soon after that I was old enough to go to school.
The law in Australia didn't allow me to be integrated into a main-stream school because of my physical disability.
God did miracles and gave my Mom the strength to fight for the law to be changed.
I was one of the first disabled students to be integrated into a main-stream school.
I liked going to school, and just try to live life like everyone else, but it was in my early years of school where I encountered uncomfortable times of feeling rejected, weird and bullied because of my physical difference.
It was very hard for me to get used to, but with the support of my parents, I started to develop attitudes and values which helped me overcome these challenging times.
I knew that I was different but on the inside I was just like everyone else. There were many times when I felt so low that I wouldn't go to school just so I didn't have to face all the negative attention.
I was encouraged by my parents to ignore them and to try start making friends by just talking with some kids.
Soon the students realized that I was just like them, and starting there God kept on blessing me with new friends.
There were times when I felt depressed and angry because I couldn't change the way I was, or blame anyone for that matter.
I went to Sunday School and learnt that God loves us all and that He cares for you. I understood that love to a point as a child, but I didn't understand that if God loved me why did He make me like this? Is it because I did something wrong?
I thought I must have because out of all the kids at school, I'm the only weird one. I felt like I was a burden to those around me and the sooner I go, the better it'd be for everyone. I wanted to end my pain and end my life at a young age, but I am thankful once again, for my parents and family who were always there to comfort me and give me strength.
Due to my emotional struggles I had experienced with bullying, self esteem and loneliness, God has implanted a passion of sharing my story and experiences to help others cope with whatever challenge they have in their life and let God turn it into a blessing.
To encourage and inspire others to live to their fullest potential and not let anything get in the way of accomplishing their hopes and dreams.
One of the first lessons that I have learnt was not to take things for granted .
"And we know that in all things God works for the best for those who love Him."
That verse spoke to my heart and convicted me to the point where that I know that there is no such thing as luck, chance or coincidence that these "bad" things happen in our life.
I had complete peace knowing that God won't let anything happen to us in our life unless He has a good purpose for it all.
I completely gave my life to Christ at the age of fifteen after reading John 9.
Jesus said that the reason the man was born blind was "so that the works of God may be revealed through Him. "
I truly believed that God would heal me so I could be a great testimony of His Awesome Power.
Later on I was given the wisdom to understand that if we pray for something, if it's God's will, it'll happen in His time. If it's not God's will for it to happen, then I know that He has something better. I now see that Glory revealed as He is using me just the way I am and in ways others can't be used.
I am now 23 years old and have completed a Bachelor of Commerce majoring in Financial Planning and Accounting.
I am also a motivational speaker and love to go out and share my story and testimony wherever opportunities become available.
I have developed talks to relate to and encourage students through topics that challenge today's teenagers. I am also a speaker in the corporate sector.
I have a passion for reaching out to youth and keep myself available for whatever God wants me to do, and wherever He leads, I follow.
I have many dreams and goals that I have set to achieve in my life.
I want to become the best witness I can be of God's Love and Hope, to become an international inspirational speaker and be used as a vessel in both Christian and non-Christian venues.
I want to become financially independent by the age of 25, through real estate investments, to modify a car for me to drive and to be interviewed and share my story on the " Oprah Winfrey Show "!
Writing several best-selling books has been one of my dreams and I hope to finish writing my first by the end of the year.
It will be called "No Arms, No Legs, No Worries !"
I believe that if you have the desire and passion to do something, and if it's God's will, you will achieve it in good time.
As humans, we continually put limits on ourselves for no reason at all! What's worse is putting limits on God who can do all things.
We put God in a "box". The awesome thing about the Power of God, is that if we want to do something for God, instead of focusing on our capability, concentrate on our availability for we know that it is God through us and we can't do anything without Him. Once we make ourselves available for God's work, guess whose capabilities we rely on? God's !
May the Lord Bless you In Christ, Nick Vujicic
from bettyg; i hope this touched you as much as it did me! i've walked away a better person for having read and posted this here for us all as a SUCCESS story of many adveristies!! Posted by bettyg (Member # 6147) on :
Boy Attends First Prosthetic Fitting Second Arm not here yet!
POSTED: 5:53 am CDT July 31, 2007 UPDATED: 10:21 am CDT July 31, 2007
Des Moines, Iowa
there is a video and the story can be read at the link above.
Hubby/I have been following this story closely; he's a real sweetheart. Reminds us of MATTY STEPHANEK; one of jerry Lewis' kids! Enjoy ************************************
It reminds me to count my lucky stars I can still do as much as I can after watching the many obstacles he has had to overcome! Posted by skt (Member # 13333) on :
Thanks for all of your postings.
It lets me know that I am not alone. I could deal with the joint pain and medication side effects, along with the limits that pain placed on my activities.
But recently when the pain started keeping me awake at night, the fatigue and anxiety made me feel so irritable and depressed I started to feel like I was losing it emotionally. I began to wonder if I had been misdiagnosed and wasn't being treated for the actual problem. I began wondering if I would ever feel like my old self again.
Not knowing how long this will go on is really scary. After trusting traditional medicine for so long, it is unnerving to delve into the less traditional treatments.
Do the rest of you feel overwhelmed by anxiety sometimes? What do you do to cope? I used to raise my spirits with exercise, but can't really push that now for fear of pain consequences. I would really appreciate any advice.
[ 28. September 2007, 10:54 AM: Message edited by: skt ]
Posted by locdog (Member # 10372) on :
I just wanted to post this for all of those out there who are suffering and see no llight at the end of the tunnel.
I won't go into my whole 8 year stroy of infection lets just say I have STRUGGLED immensley over the last 8 years.
For the last year i have been treated by an llmd in scottsdale (lucky to have found him).
Diagnosed with babesiosis.
Blood smear babs and white matter in brain extremely prevelent.
Took doxy for 6 months, started to feel better after 4 annd relapsed hard after 6.
Put on mepron and zithh twice daily after relapse. was hell for first 2 months. lost a lot of hope.
Started to feel sporadically better after 3 months and more consistently better after 4 and 5 and now im at 6 months and i dont really think about it to much at all.
Went to doc today and my smear was DRASTICALLY reduced. He is using my case for babs diag in his power point presentation to state and federal levels. Have another 6 months to go and my hopes are high!!
If i see the same level of improvment in the next 6 as this 6 I'm home free.
There is hope people even when it seems immposiblly difficult! Stick with it and you'll be rewarded.
Much Love, Tony
Posted by meg (Member # 22) on :
lymeloco Frequent Contributor Member # 7192 posted 20 June, 2005 08:26 AM Profile for lymeloco
Not sure what the heck I'm doing. So hope this goes through the right way!
I have had lyme many, many years! Don't know for sure if it goes back to childhood, but had lots of sickness as a kid, daydreamed constantly in school.
I started with neuro symptoms first, five years ago. I've been to four neuros within the five years. I had leisions on mri and also spect scan showed decrease in blood flow.
I have done i.v.. and orals. When I first went on tetracycline, I kept getting sick. I wrote my llmd, he said it's a herx. Kept getting worse, my p.c.p. said it was the flu. Finally after a week I drove myself to the doctors, and they ambulanced me out of her office.
I was very dehydrated, and was having lots of pain! They shot me up with morphine, but things got worse, and worse!
It was a gallstone that was blocking the pancreatic duct! I was 3 weeks, 2days in that hospital! Was fed by tubes, had blood, and was given insulin!
Now please don't think the antibiotics caused all of this. I had problems before with my gallbladder, and many of my family members who are not on anibiotics also had there's out! Just possibly the icing on the cake!
I am now taking 3 biaxin with plaquenil. I am also on a new sleeping pill which is probably helping my immune system to fight.
I felt good enough to regrout my kitchen tile counters, and I'm going to start painting my kitchen walls!
Never followed any diets, never had yeast, but suffered yeast way before antibiotics, and twins were born with it also.
I am writing a book here, so if you want any other questions answered, I'll try to keep it short! Thanks all you wonderful people who have kept me sane. I even asked to be put away in an asylum, but they said they've seen nut cases in there lives, but I wasn't one of them! So again, it has been all of you that has kept me fighting. Rhonda
Posted by meg (Member # 22) on :
I don't know where the link is either, but perhaps my story will give you some hope...
9 years ago I came down with a mystery ailment... BONE CRUSHING tiredness, dizziness, chronic runs, hair falling out, sleep problems.... I thought I was dying.
I went from Dr. to Dr. and the diagnosis they gave me - Epstein Barr Virus - that I had mono, that I would by symptomatic for a long time. That I would tire easily for the rest of my life. 2 years later, I felt better, but indeed always tired very easily, had tempter tantrums, and tinnitus. I was very prone to sinus infections, and would get U.T.I.'s every 6 months like clockwork.
Fast forward 8 years later, to last July. Lots of stress going on in my life, some kinda teeny lump on the inside of my ear that hurt like hell, then found the teeniest tick I ever saw in my bed.
Followed by vertigo, fever, sinus infection, runs, and neck pain. Diagnosis - sinus infection (yeah right). 4 weeks later a big circle appeared on my arm. Then the muscle spazms in my neck and head kicked in, followed by migraines, panic attacks, brain fog, then sciatic pain, leg swelling, heart palpitations, eye swelling (I looked like I had been punched in the eye)...
8 months and 12 specialists later, I finally went to an LLMD in March. She started treatment immediately for Lyme and Bartonella. She also suspected I had parasites, as I had by this time lost 50 lbs. She also said my 'Epstein Barr' incident was probably my first infection with Lyme.
So here I am now almost 5 months into treatment. I sleep through the night (although I still take Flexeril at bedtime) , have almost no muscular pain, the floaters and spots are almost gone, my blood pressure hasn't been this good in
years, my head is clear, my stomach is great and my sinuses are great (and I have a bigtime Mold allergy according to allergist). We're still working on the
tinnitus/dizziness - I hope the damage isn't permanent. I go to work every day, I can go out to dinner and big open spaces don't freak me out anymore. My LLMD has weaned me down to half doses on my antibiotics. I think a lot of my remaining issues are yeast and heavy metals related.
Am I cured? No. But am I better - WAYYYYY BETTER (80%). In 5 months, that's terrific considering how long I went untreated. Did I ever think I would even make it this far?? Not on your life.
I have tried a few things to help heal myself that others may or may not think conventional, but I know they really helped me. Your email is not listed, but mine is, so please feel free to email me privately.
I hope in some little way my story has helped you feel that there is a little light at the end of the tunnel. Because, really, THIS TOO SHALL PASS...
Healthy thoughts to you.
------------------ Julie G. __________________________________________________ ************************************************** UPDATE::
Posted 12 November, 2007 06:08 PM lymeinhell Been so busy I forgot to celebrate the day - Nov. 10th was my 3 year anniversary off antibiotics!! [woohoo]
I continue to eat right, GET MY SLEEP, exercise and detox.
When I look back to a year ago, I say I'm a little more 'normal' and really don't have any lyme moments. I even survived a cold without any lyme symptoms kicking up.
I still take TOA Free Cat's claw, Flexeril, a beta blocker to keep my pulse in the normal zone(2 tries to get me off have not gone well), and periodic treatment with Diflucan. I continue on my vitamin regimen and Theralac and biweekly IM shots of magnesium. I use the podi patches about 5 days each month.
Just wanted others to know that it can be done - people do get well and even stick around here (just maybe don't stick our 2 cents in often enough).
But it's 2 years without antibiotics for me today!!!! And I feel fantastic - better than ever!
I still take toa free Cat's Claw for maintenance, tons of vitamins and minerals, Theralac (a miracle worker) and Flexeril at bedtime. Wish I could get off of it but still not able to.
I continue to give myself IM Magnesium shots, although weaning down to every 10 days now (from weekly). My magnesium levels are in the lower end of normal range (from scary low levels). Recent hormone testing has shown significant increase in my Progesterone levels, so I guess the balancing act is beginning to work.
I use the Podi Patches one week a month, although not much comes out of them any more and they're very light in color - another good sign..
Haven't had my CD57 rechecked because.... well because the last test a year ago got me very bummed despite my good health (I was a 1/19 absolute)..
Not bragging here - just looking to share some good news and let the newer people know there IS light at the end of the tunnel.
a nuerologist at Columbia told me he is now in or just graduated from law school.
Evan White took YEARS of treatment and therapy to get to 100%
I think this essay was written in 1996 or 1997.
"Severe neurologic Lyme is reversible" by Ruchana White (Evan's mom)
Evan White, bright, active and fun-loving, became so ill he could not walk, talk, read or write. He barely functioned for three and a half years. Evan spent three years in the hospital. He did not attend school for four years, missing 7th, 8th, 9th and 10th grades.
At 12 years old he was nearly neurologically dead and atrophied from head to toe. Wearing neck, body and leg braces to hold himself in a sitting position, Evan was tied to a wheelchair. Unable to sleep from terrible head pain, in fetal position, he screamed in agony most of the day.
His great sensitivity to sound meant that he had to stay in very quite places with earplugs and earphones in and on his ears. Sometimes able to watch television with no sound, he learned to read lips and eventually developed his own sign language, which was so clever and universal everyone could understand him.
Evan refused to learn official sign language because he knew he would get well. This limited communication brought Evan back into a learning mode.
In August of 1993 Evan and I (his mother) testified for the United States Senate Hearings on Lyme Disease chaired by Sen. Edward Kennedy.
Evan forced himself to go to Washington. With terrible head pain, in a wheelchair, with his tremendous noise sensitivity, Evan braved the noise of an airplane trip because he had a goal.
His goal was to tell the government how he and other children lived in PAIN and no one listened to their cries! They were losing their precious childhood years.
Evan, pushing me away to speak on his own, uttered his first broken words in three years at the hearings:
"Everyone must know so everyone can help. We need help now!"
The senators had tears in their eyes while he tried to express his feelings int he Senate Hearing Room.
Highlights of the hearing were televised and printed all over the world. Evan received a wonderful letter from Senator Kennedy, expressing his thanks and promising help.
Evan was so hopeful! He waited and waited. People from all over the United States called to ask if the government had followed up to find a cure. We had no answer! We are still waiting for a direction and cure for chronic Lyme disease.
When we arrived home in New York from the Senate Hearings, Evan stood up, trying to hold on to a walker. As he struggled to stand, he fell, breaking both of his hips because of osteoporosis.
This can happen to children who have not been mobile for a long time. After all the crises and horrors we had lived through these past years; the hospitalizations, the immobility, the digestive problems, the speech problems, the pain; I feared the worst.
When Evan passed out and was lying unconscious on the floor, my heart went to my throat as I called 911. I thought we had really lost him.
Evan's strong will to recover and live a normal life prevailed. He had surgery on both hips and started to improve again. He knew what life could be and wanted his life back again! He had incredible inner strength.
In December of 1993, after being off antibiotics for a year and a half, Evan went on Bicillin shots. As time went on his speech returned and got better and better. However he still had head pain. Our home had become the home of a handicapped child. We had a ramp, aChairglide, special bathroom facilities.
We couldn't run water, vacuum, use the dishwater or listen to television of music. We have two other active children, but our home was a quiet zone. The White house ain't what it used to be!
In March of 1994 Evan received a wish from he Children's Wish Foundation. His wish was to meet basketball player Shaquille O'Neill.
With all of his head pain and sound sensitivity, Evan, his dad, sister Nicole in her second year of medical school-first in her class (we are proud), and brother Daniel, captain of the Skidmore College ice hockey team and first in goal scoring in the United States- Division Three (we are proud) and Mom went to Orlando.
In the Orlando Magic locker room Evan hid his wheelchair and propped himself up against the wall, holding a tripod cane. He did not want Shaquille to see him in a wheelchair. Shaquille came out around the corner (the hugest, biggest, smiling man) saying, "Evan, my man, how are you?"
We all spoke for a while as the photographers took pictures of Evan and Shaq and us. This exciting moment was a great help to Evan and another step toward his recovery.
We were guests of the Orlando Magic's in theitr Sky Box for the game. Unfortunately Evan had to sit in the hall and outside on the patio, because the noise was so loud and his head was killing him. But he persevered!
As part of the wish the family had a week at Disney World. We took Evan into the park but had to leave immediately, he was so ill. The good part of the trip was that each step and experience Evan took gave him hope.
As my husband, Ken, (the man behind the mother and child) says, "Senator Kennedy helped Evan to talk and Shaquille O'Neill helped Evan to walk." If you don't have goals, no matter how ill you are, you will never get anywhere!
Empower yourself! Evan tells us now that when he was at his very worst, not able to move a muscle or utter a word, in severe pain, he had a goal. He would move one toe at a time, then one finger.
When he was losing his speech and his body and his mind were dying on him, Evan would say, "Help me! Please believe me!" At that point there were doctors and nurses who did not believe him and he could feel it! So sad that aside from having to deal with being so sick, the caretakers that he depended on didn't believe him.
Evan knew he had to help himself, by himself. His body was failing him because of the disease and he knew it. It was not psychosomatic! He was not malingering! He wanted to be on his travel soccer team, play lacrosse, ski, and of course flirt with the girls he always loved.
Humor has been one of Evan's greatest assets. He would raise his middle finger at various individuals he did not trust and smile in an innocent way. This was his only release from the frustration of dealing with adults who didn't understand or trust him.
My husband noticed and picked up on this. Evan's dad now utilized humor as an integral part of the therapy for his child. We had different roles: education and interaction with the Lyme disease community was mine, his was humor therapy.
We saw signs of awareness in Evan now. His dad would bring Evan posters of the Sports Illustrated bathing suit models with my head on them, or basketball players with family members' heads, funny videos, waterguns, etc.
Another child with Lyme disease, curled up in a ball and screaming in pain, was admitted to the hospital. This very serious children's hospital was surprised by he jello-fight therapy, water guns and sexy posters. Humor therapy is the only way to go when thing else works. It brings positive reactions and hope! We teach never give up no matter what.
During the worst times of Lyme disease Evan's therapies included what ever worked- acupuncture (by a great blind doctor, who had a real insight), massage, biofeedback, physical, occupational and speech therapy, psychiatry, and antibiotic therapy. There was bad doctoring at first and then some real good doctoring.
As the Bicillin therapy continued into the spring of 1994, Evan started to identify pictures. Newspaper headlines were popping out at him and he knew what they meant. He still could not read and did not know the alphabet or numbers. He did not even know the letters of his name. Neurologically he tested very poorly. By May he started to walk and read and his speech became better.
Evan was out of school for four years and unable to obtain a formal education program (I.E.P.) tailored to his needs, and was classified in his school district. He planned on going to high school in the fall after a three and a half year stay in the hospital.
That same month Evan left Helen Hayes Hospital. He was able to be tutored at home in mathematics, English, history and science in June and July. In August, Evan was given a three-hour high school math exam. He scored 93%. How is this possible after four years of no education?
School began in September. Evan struggled through every day. He signed up for a full load of five courses: biology, 10th grade English, math, history and Spanish. In pain, using his acting skills, he faked the way he felt in front of his friends.
Limping to his classes, coming in late some mornings and being absent on sick days needed to be explained over and over to educators who had difficulty understanding his situation in a compassionate way.
A child who could easily have gotten A's with no home tutoring needed to attend a real school atmosphere to reach his own goals. Evan's goal was to have a normal, fun, thriving life like other children was constantly challenged by the outside world. A doctor friend once told me that the healthy never believe the sick!
Evan was certainly determined! A year before this he weighed 80 pounds and could not eat. Now he set up an exercise program of body building for himself: 100 push-ups and 100 sit-ups a day plus weight lifting. Evan came home each day exhausted and in pain, but forced himself to work through his exercise program.
In December of 1995 Evan took himself off antibiotics. One year had passed and he had progressively gotten better and was functioning on a higher and more normal level.
In March we were invited to speak to the Lyme Disease Group in Vail, Colorado. This proved to be another important step for Evan. Not only could he speak to others and help them, he remembered his skiing skills, physically and mentally.
In Beaver Creek he met an older man who was a Green Beret and skied down closed trails and jumps with him. Amazing, from a child who could not walk the year before and had pins in his hips! At night he would go to the Vail hangouts and meet other teenagers from other parts of the country.
We had thought we would never see the day! So social, so strong, inside and out, and very handsome (we are very proud!!).
In April of 1995 Evan was in a car accident. Sitting in the back seat, he was struck with the front seat, which broke his femur in half. A rod was put into his bone, from his hip to his knee. Here we go again! He was the only one hurt in the car accident, but he was comforting and helping the other shocked boys.
As he said, "What are broken bones and pain when you have Lyme disease?" (Nothing of course.). Rehabilitation and crutches again!
At the end of the school year Evan asked if he could go away somewhere where no one knew him or his illness. He found a college program at the University of Colorado in Boulder.
Taking an S.A.T. review course and getting the leads in his acting course, Evan became his own person! He was winning dance contests at the clubs and meeting students from all over the country. This outgoing social human being needed more in life after missing so many years.
With zest and enthusiasm Evan called us and pleaded to go to prep school in the fall. He wanted to really learn and be challenged in small classes with greater interaction with teachers, teachers that were teaching and discussing topics with him, not at him.
Evan had lived in a world of adults and learned how to deal with them as an adult. He was looking for respect!
We looked at college preparatory schools such as Choate in Connecticut, Dwight Englewood in New Jersey and nearby Saddle River Day School. Evan took the National Prep School Test in the designated time and scored at the top! He could have a choice of schools!
Realizing that Evan still does not feel totally well, we chose the school closer to home and his doctor. Evan also received a Merit Scholarship.
This has been a good year. Evan loves his prep school. He is learning tremendous amount and is starting to think about colleges. Evan did well on his P.S.A.T. with only one year of education. He would like to go to Brown University in Rhode Island.
Evan wants to become a psychiatrist and stand-up comic actor. He is a good listener and people problem solver. He knows life from inside out!
I asked (NY neurologist) Dr. Brian Fallon how Evan became so smart after all these years of no education. He said, "Evan was listening all those years." He could not walk or talk or read! HE COULD LISTEN!
Evan just came back from his vacation (without Mom, with a friend and his family) in Cancun, Mexico. Looking very tan and handsome, he said he never danced so much in his life!
This is a very exciting time at the WHITE HOUSE- A MIRACLE.
Posted by meg (Member # 22) on :
Historical mileposts...for those feeling like they are on the wrong boat
Lishs mom posted 31 January 2004 21:19
I was reflecting today on our journey with lyme disease. Reflecting on the pain, the fear, the doubt....
....the ups, the downs, the sideways...and then the joys...
Its been a very long journey, some of you know us well, others are new here. When we started our journey it was full of hope, and we felt refreshed. Somewhere along the way, we found that many of those we spoke with three years ago, have gone on. Either became frustrated and quit, or became well and dont visit the board too often.
Those who became well, we quickly have forgotten about, and the board is filled with others who are too, just beginning the journey.
Those who became frustrated, began jumping from treatment to treatment in hopes of finding a cure. In hopes of living their dreams of a fullfilled life, free of pain, free of random thoughts on top of random thoughts that come so fast you forget the "main thought" which was not random at all...
While our journey is still in progress, I have been in prayer regarding sharing, being careful not to take the credit our selves, but to Thank God every day for the special people who have interceded in our daily life, to make it a bit better for us.
Dr. Jones, Sabra and his full staff. Some are no longer there, but we love them all. TinCup, LDA, and so many more. Ultimately God brought them in to our lives, and have helped heal us.
Today, I think back when we first got bit...and got sick. My gut said Lyme. My docter said no.
8 years later after almost loosing our 12 yr old daughter to congestive heart failure due to her arrhithmya from lyme disease, watching her hobble like an old lady, and crying her to sleep at night, holding her up in the day to do basic tasks like eating, and wondering if she would live another year (according to her neurologist and cardiologist she would not!) and not even knowing if I should pray for life, death or healing (we had prayed for healing for so long we began to think it was not Gods will) for my daughter....we found she had lyme, erlichia and babesia.
Our daughter had brief periods of remission during her 8 year ordeal, which brought hope. It also brought frustration, because they would be followed by bouts of health much worse that what we had already experienced.
After tincup so lovingly referred us...(yes, with a rolling pin in her hand ready to pop me over the head if I said no!).... to Dr. Jones, we knew that life would be much better.
To our surprise, we were terribly terribly wrong. Our daughter began treatment, and she became unable to be on her feet very long. Her pain now was about 30 on a scale of 1-10, 10 being the worst. The next 12 months of our lives were spent with her in bed nearly 22 hours a day. She cried at night...she cried at day and she tore our hearts apart. So many times I wanted to stop treatment...so many times she begged to stop treatment. But we all would remember the path we had been on.
We began to justify that path wasnt so bad...was it??? Not nearly this bad...
But 8 months in, we literally woke up one day with a daughter who was like all the other teens. It lasted a short while, and she drifted back into her body riddle with pain. But this brief glimpse, was enough to carry us on with more demand for a healthy life.
I researched more, we spend thousands of dollars to see the best...and Dr. Jones patiently waited. Documenting small positive changes that were difficult for us to realize..
The many trips to the ER, became one long fuzzy year...and I began to doubt again. Was this ever going to end? Was this a big lie? Should we quit antibiotics?
I went to our Internal med doc, and asked her to do a full body scan. I KNEW my daughter must have cancer. Leukemia had been a possibility before her lyme diagnosis. Please check her again. I know we are dealing with something else. The gracious doctor did every test she could. She began implementing new pain therapies. But she told us, that she had seen improvement, even if we didnt.
She had faith in Dr. Jones, and Gods answers through doctor Jones, for healing for our daughter.
She kept us on track with the therapy, herself curious to see if "this would really work".
Our final "tempation" to stop all therapy came with the most severe, debilitating headache one could imagine. Our daughter would writhe in pain, after 100 mg of IV demerol, her body would continue to spasm from the severe pain in the spine and head. For nearly 6 weeks, we made the local er our every other night travel.
Then...one day our daughter woke up without a headache, and the pain was tolerable, and her body started to show significant healing.
She began physical therapy two weeks later, and has continued building her tissues that connect muscles and bones. Her pain is under control.
Yes she still gets tired, ....but wouldnt you after rock climbing 15 hours a week, e skating once or twice and week, AND doing your school work? Oh yeah, she is retaining her school work too!
Our road to recovery is still in progress. We attribute the excellent recovery so far to answers from prayer from many of you and us on behalf of our daughter, excellent doctors who really care,good diets, and a young lady who never gave up or jumped from protocol to protocol, but followed the LLMDS advice, even when it seemed the rock wall we were climbing was too tall with too few holds.
I know this is long, but I really wanted to share, to give hope, and to help those debating if they should continue or stop treatment, to choose the advice of their LLMD. I hope and pray for all of you on this board, that you will continue to heal.
Love, Theresa
Posted by Andie333 (Member # 7370) on :
I think it's time to add my story to this thread.
I've actually had to cobble together my Lyme history, based on journal entries. I had symptoms dating back to the early 1990s. Then in 1996, I had a tick bite and rash. At that time, I was treated with abx for about 18 days. The rash went away, and I figured I was fine.
Over the next few years, I had a variety of weird symptoms, which sent me from one medical specialist to another--about 16 in all. Each one seemed convinced of what was wrong with me, with dx ranging from endometrial cancer to tendonitis to hypothyroidism. I spent a lot of money on treatments they suggested, and my health continued to worsen.
By 2002, I was exhausted all the time and only working part time. My memory was slipping, it was difficult for me to concentrate or think. I was walking with a limp and still going from doctor to doctor. I was also beating up on myself a lot, because I didn't know what was going on...so I kept trying to push myself.
Finally, in 2005, an acupucturist I was seeing suggested Lyme Disease as a strong possibility.
I went online, found this site and started reading about all the controversy surrounding the disease.
I spent a long long time trying to figure out which LLMD to see and finally decided on someone out of state. I think that's one of the best decisions I made.
I started antibiotic treatment for Lyme and Bart in June, 2005.
Initially, I got much much worse and had new, scary symptoms which included seizures, full body paralysis (which lasted more than 3 hours), chills that nothing could slake, even worse exhaustion and a slew of bizarre cognitive problems. I literally found it impossible to remember anything from one minute to the next.
I held on to a thread of work, just to stay busy, and I refused to go to bed for more than a day here and there. I kept holding out hope that I would beat this. I prayed a lot and struggled against awful depression.
I augmented my antibiotic treatment with herbs, supplements and some alternative things. I was fortunate enough to have weekly acupuncture, which I think helped me a LOT, as did Chinese herbs my acupuncturist gave me. But I never stopped taking antibiotics.
It took about 9 months before I noticed discernible improvement. At that point, my LLMD started me on tindimax, to address the cystic form of the disease. It was a rough antibiotic, but I began to notice even more improvement.
After being in treatment for about 14 months, I was able to walk more than a few blocks. I pushed myself to walk until I was up to a mile. Sometimes, though, my foot would just go numb or I'd develop searing pain in my hip. Those had been very early symptoms, and I never knew when they would happen again.
Around 14 months, I was hired to do some consulting work for a national company. After a few contract months, they asked me to come on full time. I talked with my LLMD, my acupuncturist, my SO (who's been a rock through all this hell). The health insurance alone made the whole thing too tempting to refuse. Prior to this, I'd been paying BCBS out of pocket, which was a fortune!
I started working in January, 2007 and have been there ever since. Although I told my bosses about my condition prior to them hiring me, I doubt my co-workers have any idea I've been sick.
I'm still on abx but am weaning them down. I now walk regularly--one to two miles at a time three or four days a week-- and only occasionally have the numbness return. My thinking has vastly improved, the stuttering I had is gone. I no longer have the sensory distortion I did. My social life is back.
This past summer, we vacationed in Canada, and I drove the whole 9 hours to get there with no problems.
I have a good friend who's a nurse and saw me at my very worst. She told me just recently that she never imagined i would ever survive this. I was drooling and seizing and shaking with chills.
I'm definitely not there anymore.
I feel incredibly grateful to have so much of my life back, and I hope anyone who reads this feels the hope it holds.
Andie
Posted by Andante (Member # 11245) on :
quote:Originally posted by TheCrimeOfLyme: I'm finally going to add my sucess story. I got sick in 2002 and went undiagnosed for 9 months. Little did I know that AFTER i started treatment for what I thought I only had for 9 months, that "other symptoms" that i had for YEARS would disappear as well. I never linked them.
I had SEVERE headpain, head burning, neck pain, back pain, face pain, jaw pain, seizures, spurting nose bleeds, "jumpy" muscles, buzzing and twitching, SEVERE vertigo, SEVERE pain in my eyes, throwing up and at times neurogenic bladder. I couldn't think for the life of me ( the fog), would get ringing in my ears, my eye would twitch, you name it, I had it. Swollen glands, off and on sore throats, shoulder pain, etc.
At my very worst, right before I got diagnosed, I was having periods of temporary paralysis. I will never forget the day it first hit as I had no clue what was happening to me and thought for sure I was going to die.
I started my abx in April of 2003, I believe, if I am correct.
I did amoxycillin 3000 mg for six months. Clindamycin and quinine for six months rifampin for 3 months 600 mg a day Biaxin and Mepron ( biaxin 1000 mg a day and mepron I literally had to take only 1/4 tsp as it made me VERY VERY suicidal and MEAN) doxycyline for 3 months Ceftin for 2 and then bicillin shots for over a year. This in
addition to the diflucan, nystatin, vitamin b12 and host of probiotics and supplements that I took. I also did artemisinin at a VERY low dose 100 mg per day for a while.
I did take a year break on abx due to leaky gut syndrome and treated that homeopathically.
In addition to the abx, I also did: Sauna Lemon water detox out the wazoo Chiropractors trigger point therapy ART testing and followed all that I could on that Lymphatic drainage bentonite clay detox baths "skin brushing" emotional freedom tapping Rife Allergy desensitization and much, much more. Liver flush
I tested positive for: Strep in the blood Mycoplasma pneumonia Lyme of course ( even CDC positive). The PA Health Department called me and basically begged me to "admit" I didn't get it HERE IN PENNSYLVANIA! Bartonella PCR positive Erlichia came up positive once I was tested for a host of viruses and only came back as having EBV in the past
Throughout all of this, my immune system was tested only twice but registered "in top health" ba ha ha. But in any case, it was fighting big time.
To be quite honest, the things that helped me the MOST in this order is:
1.) The amoxicillin took away my brain fog in two weeks flat. Yes, it returned from time to time BUT never like it did previously, and it was my first abx.
2.) Leaky gut treatment homeopathically helped me VERY much. I had leaky gut so bad it gave me orthostatic hypotension. I did NOT have it previously at any point, but developed it due to all the abx in my system.
3.) These aren't in order- but ART testing and allergy desensitization turned my world and my HEALTH around. If I hadn't went that route ( and I was 2 and a half years into treatment), I doubt I would be well today.
4.) Liver flushes. ( this actually kick started me losing ALOT of weight. I was 155, now Im 128 and digging around looking for smaller jeans "pre lyme" in my closet).
5.) Bicillin. Bicillin did the trick at pushing me into remission.
6.) Diflucan- turned my life around as well.
THIS remission for ME: I don't really flare anymore but I still do get desparately ill around my period, for one to two days. I actually know it is coming because I will sweat under my underarms BAD , and soak through my clothes. NOTE:
PRE lyme treatment, I had this "hyperhydrosis" for 10 years STRAIGHT. Now, I have it once a month. So I KNOW its something that I did that helped it, so I have to keep chugging on.
I can pretty much eat what I want to , but my body does not tolerate pasta, soda/pop of any nature or tomatoes. Potatos also make me gravely ill. Food actually INDUCES brain fog.
I just graduated finally and fully two weeks ago from college. My last day there, a gift was given to me- I felt COMPLETELY normal and the orthostatic hypotension didn't kick in at ALL.
I still suffer from orthostatic hypotension, some sleep apnea, and period flares as I said. I STILL have some "neuro rage" left and my vision I believe is permanently screwed up thanks to lyme.
I have undergone NOTHING and I do mean NOTHING but stress this ENTIRE year, from getting engaged, to him cheating on me 17 days later, to my sister stealing money from me, to contemplating moving, etc. And I haven't relapsed. i also had a concussion in early june. I actually DID RELAPSE over that but bounced back in under a month.
Keep on going people, it will happen for ya. It took me 3, almost 4 years) and mind you a year off from abx, but Im still here.
In the end, it was the alternative/adjunct treatments that saved me. The abx were a necessary evil though. I wouldnt have made it without them.
I will be lurking in the background trying to catch up on what everyone is up too...
Hugs Starr
Not sure why my post is coming out this way.. guess it shows i am still lopsided.. lol
[ 08. June 2007, 11:05 AM: Message edited by: beach4so ]
Posted by meg (Member # 22) on :
Topic: My experience, my opinion roro Frequent Contributor Member # 13383 Posted 04 November, 2007 05:29 PM
I just want to post my experience here, in case it might help others.
I was originally diagnosed with lyme disease in 1995. I had three bite marks on my leg that turned red and expanded. the doctor notes desribed as "halo"
I did i think 4-8 weeks of doxy, can't remember. thought I was cured. a year later I started getting painful knees.
I was always very active, athletic, did a lot of hiking, camping, rollerblading, dancing, worked out at the gym.
for years I got the runaround, was diagnosed with CFS, depression, treated for hepatitis C. I got worse, but had periods of remission here and there where I felt ok. I now wonder if those were after antibiotics, but I didn't notice back then.
In 1999 I found a doctor who treated me with a lot of alternative therapies. He never told me he suspected lyme, but treated me with what I know now were lyme treatments. IV vitamin C, transfer factor, many other herbal and natural therapies.
when I did question about lyme, he told me I was negative, but i never saw the tests myself. he said antibiotics don't work anyway when you had it as long as me.
I continued to get worse despite all the natural therapies, diet, vitamins, etc. I also started taking cortef for adrenal exhaustion, and started having autonomic dysfunction. never did long term antibiotics.
In 2004 I went into heart failure, got meningitis, cranial nerve palsy and was admitted to the hospital. I have gotten progressively worse for the past 3 years.
I have been suspected of having ALS, MS, myasthenia and many other things because my symptoms are so severe. I have gotten no answers, no diagnosis, and no treatment from mainstream medicine. I have arthritis in my spine, and damage to several discs and 2 vertebrae.
narcotics kept me functioning at a low level for a couple more years. last year I stopped functioning. this past year or so, I have been very ill.
I have difficulty doing even the simplist things, like bathe, walk, have a bowel movement. I wanted to die this summer. I really was looking into physician assisted suicide. I cried every day.
since august 20th I have been on antibiotic. I have gotten a little bit better. my symptoms are getting better and I have some good days now. I no longer want to die. i no longer cry every day. my pain is better.
I still have some symptoms, and I still have bad days, but i am much better than I was last summer. I may have permanent nerve damage, so I dont know if I will get 100% better.
I wish I had gone to an LLMD years ago and tried long term antibiotic. maybe i would have prevented permanent nerve damage.
Posted by meg (Member # 22) on :
CaliforniaLyme Frequent Contributor Member # 7136 Posted 06 November, 2007 08:56 AM
Annie Leach & her dog, Wolfgang Amadeus Mozart From old Lyme Alliance Story Archive ************************************************* Annie and Wolfgang Amadeus Mozart
1992 Muskegon Chronicle.
Several years ago, someone shared this story of Annie and her dog Wolfie's bout with Lyme disease with us. We often thought about their story, and wanted to share it with you. This story is presented with Annie's (and Wolfie's!) permission, along with an update that Annie thoughtfully gave us on their progress since 1992. ******************************* Annie Leach and her dog, Wolfgang Amadeus Mozart, have a special relationship. They became severely disabled with what was eventually diagnosed as Lyme disease. They suffered for a long time before their conditions were identified and treated. They made good recoveries.
Leach, 37, of Muskegon is an art teacher at Michigan Dunes Montessori in Norton Shores. She was stricken a year ago by a puzzling, debilitating condition. She wondered if she would be able to continue working. Unable to drive, unable to walk without assistance, suffering excruciating joint pain and headaches, the vision in her left eye impaired, Leach was at the end of her rope.
She had been battling an unidentified, worsening illness for more than a year. A host of doctors had tested and treated her for mononucleosis, strep throat, muscle-attacking viruses, migraine head-aches, sinus problems, mold allergies, infectious bronchitis, lupus, a nose polyp, thyroid disease and stress. Her medicine cabinet was over-flowing, but she wasn't getting better.
When a physician suggested that she take tranquilizers, Leach remembers thinking that she might be losing her mind. "I was really scared. I was getting this big psychological thing. I thought maybe I was just grasping at straws."
While Leach battled her illness her dog, a Jack Russell terrier, had been showing some of the same symptoms: listlessness, neck stiffness, lack of appetite. In late summer of 1991, a Newaygo veterinarian decided to treat the animal for Lyme disease, even though blood tests had not confirmed the Lyme bacterium's presence. "In a way." Leach recalled. ''the dog's problem helped me think about my situation. Our problems were very similar."
Leach's dog was named after Mozart because of his habit of hiding behind the piano when he wasn't feeling well. However, after several weeks of veterinary-prescribed antibiotics, "Wolfie" came out of his hiding place and began to behave in his usual playful manner. Inspired by her dog's recovery, Leach demanded a Lyme test for herself. To her disappointment, the test was negative. Desperate for a treatment, Leach turned to a medical practice in Saginaw she had heard about where patients suffering the symptoms of Lyme disease are often treated in the absence of blood-test confirmation.
By the time she visited one of the doctors at the Saginaw clinic in October, she had reached the weakened stage where "all I could do is stand in a doctor's office and cry. Someone had to hold onto me." The physicians "listened to me," Leach said. "They didn't try to pass it off and just prescribe medicine. They were really nice." A new series of blood tests and physical examinations, including magnetic resonance imaging, hinted that she might have Lyme disease, but the tests didn't confirm its presence. Undeterred, her physicians prescribed a series of drugs that began to reverse her illness. "It happened in stages," Leach said. "At first I got sicker, but then I started feeling better. I still wasn't feeling well, but I could see an improvement."
In January, Leach resumed driving, and she began having more and more "good days." She continued teaching and credits family and friends with helping her to continue her life. "They saved me from psychiatric treatment: the doctors (at first) kept saying I didn't have (Lyme disease)," she said. Leach still takes medicine to combat her symptoms, and visits the Saginaw clinic once a month. When she has had two consecutive symptom-free months, her medication will be reduced or discontinued.
Lyme disease has been in the medical literature since the 19th century. It is transmitted most often by the bacterial organism borrelia burgdorferi in the body of a comma-size tick called Ixodes dammini. The tick, most often found in Wisconsin, Minnesota and eastern coastal states, lives on animal hosts, particularly the white-footed field mouse and deer. It is often called the "deer" tick.
Update from Annie: In the summer of 1992, when the article appeared about Wolfgang and myself, I thought I was not only on the road to recovery, I thought I was there. I did not know what I was in for. I had been on Suprax since October of 1991, and could drive myself to work. During this time, I continued to teach part time. My students were very supportive, helping set up chairs and art supplies for me. It was a wonderful lesson for them in listening and learning from verbal instruction. My dog Wolfie often accompanied me to school and slept in the corner. During the summer I rested and slept a lot. Along with the antibiotics I took twenty-five acidopholus a day, and lots of vitamins.
In September after returning to work my symptoms worsened. I was put on Biaxin; that seemed to help. My condition was like a seesaw. I would feel great and then the symptoms would flare up. Basically, I worked and slept. During this time, Jeff, a CNA, moved into our home. In exchange for room and board, he took care of feeding me and caring for me. This was a great blessing. (If you live near a college, it might be an option for you, too.) Wolfie continued to receive cortisone shots. I went to a chiropractor. As many of you know, with Lyme disease, combining traditional and alternative medicines is a path to take - if you can find the right doctor!
Relying on my husband, George, as well as Jeff and some friends, I made it through the school year, but it was obvious my symptoms were worsening. It was decided that I would go on IV antibiotics as soon as school let out in June. I figured that this would give me summer to kick this thing! Wrong!!! In the fall, I went back to school with the IV still in. In the late fall, my dosage was doubled to twice a day. I began to gain back my strength, and on December 31 had the IV removed. During this time, Dr. Natole was a lifesaver. Somehow, he knows every little change in a patient's condition. It must be from treating so many people successfully.
After going off the IV, I was put back on oral antibiotics, and I continued to improve. This was not the dramatic improvement that occurred after treatment first started. It was very gradual, and many changes were so slight that no one could tell but me. At this time we had Wolfgang vaccinated, and he continued to improve. I continued on my regime of acidophilus, vitamins and rest. Over the next year-and-a-half, my progress was slow but improving.
In October of 1995, after six weeks of no symptoms I was taken off the antibiotics. In preparation for this I had researched, and found a doctor that believed in Lyme who would take me on as a patient, and who practiced homeopathic medicine along with traditional. Along with the acidophilus, I was given drops to take to cleanse my system of parasites. My goal was to stay off the antibiotics. Best of all, Dr. Ruth treats me as I know what I am talking about, and lets me make decisions.
Since October of 1995, I have been back to my stubborn Irish self. I'm back to work, and have even started working in an art gallery. Working around children and being exposed to many illnesses, I did not get sick. In the past several weeks, I went on antibiotics for a severe ear infection. I became extremely sick, so I went off them. That was about two weeks ago, and I am feeling better now. I believe that the bacteria are still in my system. For now though, I am blessed to be able to live, and do more than I thought I would ever be able to do. Wolfie receives his Lyme vaccine once a year, and we have found a vet that is just superb. There is hope - just take one day at a time.
Posted by MariaA (Member # 9128) on :
I think for my 36th birthday (Ok, yesterday) it's time to add myself to success stories as symptom-free. I did it by starting with a few months of antibiotics and then moved on to a year of Buhner Protocol herbs, and seem to be a 'textbook case' of what the Buhner protocol is supposed to do. Other people have had less success with it than I have, so don't assume it's a miracle cure for everyone.
Probably just Lyme, which my doc thinks is quite unusual. Possibly bartonella based on very mild symptoms but negative on bart testing.. Bad case of elevated mercury levels and problem eliminating it, can't chelate without getting Lyme symptoms badly it seems
quote:2. How long have you had symptoms?
6 years prior to starting treatment
quote:3. What herbal protocols or products have you tried?
Like most users here, I experimented with a lot of different stuff at various times during the past year for different symptoms or for candida or for detoxification of neurotoxins from the Lyme spirochetes.
-eleutherococcus tincture when I first started doxycycline at the end of my 6 years of symptoms, continuing to take it
-detox 'stuff' = bentonite clay drink (yech), later Solaray Detox formula with alginate,
Buhner protocol (the big three herbs plus stephania root for a few months
chlorella
garlic (raw frozen, also capsules): too much vomiting, probably helped control yeast and other stuff
boneset tea (for possible bartonella)
red root tincture (for possible bartonella)
poke root tincture, very temporarily (dangerous stuff, don't self-treat with this please)
turmeric
milk thistle while recovering from chelation problem
capryl for yeast
GSE for Lyme or yeast and later for ulcer in Buhner's ulcer protocol
oregano oil for yeast (didn't seem to do much)
teasel tincture at times (can't tell if it does a whole lot now when I take it occasionally, did think I herxed a bit on it at first)
huperzine A recently, doesn't seem to do a whole lot for my remaining word-recall memory problem
non-herbal products: EDTA for chelation
methylcobalamine B12 injections
WelChol when I first started antibiotics (not at the same time of day as antibiotics though) as a neurotoxin binder
undenatured whey
quote:4. What was the dosage and for how long?
Buhner herbs for just about 11 months so far (after 6 months of antibiotic treatment), following book pretty closely on this. Did full protocol of the core protocol for two or three months and then started experimenting with reducing.
other than the eleuthero, which I have taken for much of that time, I've tried the other stuff on the list for brief periods, up to 4 months on stephania root, 4-5 months of Solaray detox formula and 6-8 months on chlorella, and much shorter periods for the other stuff.
quote:5. Did you take with antibiotics concurrently? Afterwards?
I started treatment with doxycycline (no Buhner herbs yet) for 2 months, switched to azithromycin for 4 months and started Buhner herbs at the same time as azithromycin.
I only took the herbs-plus-azithromycin for 2 months of that, then stopped the herbs due to something making me feel extra-tired (azithromycin turned out to be the culprit). Symptoms went away at end of the 6 months on antibiotics, stopped antibiotics altogether, wasn't taking herbs at that time. I then relapsed very badly 1 month later.
I then started on Buhner herbs only. Only other antibiotic use: several months into the Buhner herbs, I took some biaxin for ulcer for 2 1/2 weeks, no visible effect on Lyme symptoms.
I started taking herbs around New Year's of last year. I had lots of ups and downs but the 'ups' got longer and longer pretty consistently.
I was symptom-free for a few weeks by month 5 of herbs only and continued to take them while I addressed other problems (ulcer and dental issues). During this initial period of 'symptom-free' I felt in absolutely perfect health, had amazingly sharp memory and word recall, so I have an idea that this will come back again with further treatment.
I then got a less-severe relapse after a mercury-amalgam-removal dental procedure in June, so I took amoxycillin briefly this summer (5 weeks) with no visible effect on symptoms, and concluded that these symptoms could have been mercury and not Lyme, as they're identical to what happens when I try chelation. Symptoms went away with just herbs since then. My only remaining symptom is minor memory problem- just very minor word recall trouble- but it's nothing outside the range of what's normal for most people.
I'm still on the core protocol but only take it once or twice a day at 3 pills a day (actually it's more like 2 pills of resveratrol and cats' claw, one manufacturer changed the formulas and is making bigger capsules since Buhner wrote his book).
I'm also taking adaptogens- eleuthero and schizandra (different times of day) and experimenting with rhodiola which doesn't seem to do anything noticable yet. Also taking turmeric for general brain health and capryl for ongoing yeast problems. Took huperzine A for a month but it doesnt' seem to do anything so I'm probably not going to continue. Other than that I'm not taking anything else at this time.
quote:7. Did you relapse after finishing the herbs?
Not done yet, probably not going to stop anytime soon as I know I still have this un-addressed mercury problem.
I and my LLMD both assume that I will be at risk of a Lyme relapse till I get the mercury dealt with as it seems to be related to all of my relapses (ie chelating always triggers a relapse of Lyme symptoms, and my one amalgam-removal procedure seemed to do the same thing).
I'm waiting to be symptom-free while on herbs for quite a while before tackling the mercury with chelation again as I always get sick when anything happens to my mercury levels.
I had been sick for 6 years before starting treatment with 6 months of antibiotics. The antibiotics didn't do the trick- I relapsed quite horribly about a month after stopping the antibiotics. I was pretty dysfunctional by the time I started treatment but I was no where near as badly off as some of the neuro-Lyme folks.
The symptoms I had were primarily exhaustion, extreme sleepiness, and severe brainfog, with this odd 'surface' skin pain along my back, some connective tissue injuries that didn't heal till I addressed the lyme, and sleep irregularities (either insomniac or sleeping for 14 hours). I had the really classic neck pain that I think Buhner describes as a variety of meningitis caused by Lyme. I also had sore eyes (like you haven't slept enough) and a few other woes I'm probably forgetting. I couldn't walk due to exhaustion for more than a couple of blocks by the time I started treatment. I also developed foot pain in both feet that felt like something was broken, that went away with antibiotic treatment, and I assume that's Lyme-related too.
My doctor thinks I might be the rare patient to not actually have (known) coinfections, though during my herbal treatment I got some mild Bartonella symptoms (roving sharp bone pains) and seemed to respond to/herx on Buhner's bartonella protocol (which I think would address some Lyme too, but that's my personal opinion).
I tested negative on the igenex test for Bart and have no babesia or ehrlichia symptoms so we didn't test for those, though I test very high in mercury so that's my big obvious complicating factor.
Posted by RoadRunner (Member # 380) on :
Koryn21 Flash Member Member # 13926
Icon 1 posted 29 December, 2007 06:02 AM Profile for Koryn21 Send New Private Message Edit/Delete Post Reply With Quote Hey everyone.. It has been a while since I've been here but I wanted to give hope to all of you who are still suffering from lyme disease.
Well.. I am 22 years old now and In remission for going on 3 years. I got bit by a tick when I was 16 years old.. my parents and I didn't know anything about lyme disease when we found the tick. I never got a bulls eye rash.. no symptoms at all. Then two years later when A lot of stress was put on my body from a miscarriage my symptoms came on full force. It first started out with panic attacks, then it progressed into not being able to eat, drive, go out to public places because I was so sick. I had numbness, tingling and extreme heaviness of my arms and legs.. It kinda felt like I was going paralized. I had a hard time breathing.. this is the way I explain it.. It felt like something was taking my gravity away. It was so horrible. My general doctor could not figure out what was going on with me.
She sent me to all the specialists.. you name one and I've been to one. Every test was negative at every specialist. One day I got lucky, I was picking up my blood work from the neurology place I went to for a Thyroid doctor I can't remember the name for them. My mom was looking through the bloodwork.. shes a nurse and she sees that my lyme disease test was positive. I never got a call from that office telling me I had a positive lyme disease test.. nor did I know I got tested for lyme. So I called my doctor up right away and she told me to fax the results to her when I got home, so thats what I did.
I was so excited that they may have found what was going on with me until I got a call back from my doctor. She consulted with an infectious disease doctor in the area about my results and that doctor told her not to treat me due to me only having 2 reactive bands on my western blot and I needed 3 reactive bands to be considered "positive". I was so upset because I was so sick and tired of being sick and tired.. and I thought my prayers had been answered. My GP refused to treat me even though my mom gave her consent to expose me to a month of antibiotic's just to see if I'd get better or not. Man do I hate that quack.
After that I continued to go to specialists with no answers.. everyone thought I was nuts. Looking back on it now, I don't understand how they could think I was crazy when I was 106 pounds soaking wet and I couldn't gain a pound at all. (my height is 5'5) So.. One day while I was trying to live a normal life, I was at work and I almost fainted. I left work early.. called my mom up and said that if she didn't bring me to an emergency room outside of our area...(being that the local one thought I was crazy too since I visited the E.R. a couple times a week because I thought I was dying) I would commit suicide because I couldn't live like I was living anymore.. Being so sick and not having a diagnosis.
So my mother brought me to a hospital an hour away, a very good hospital at that. The E.R. doctor did not like the way I looked.. He ran blood tests on me.. and like every other doctor he thought it was an over active thyroid, so he tested that. I had told him that I came up positive for lyme disease and he tested me.. since my blood work was normal he sent me home WITH antibiotics and told me that the lyme disease test results wouldn't be back for a couple of days and that they'd call me if I was positive.
Well.. I got that call.. I was so happy, I started crying on the phone with the doctor and thanked him and said "I knew I wasn't crazy all along" So my mother and I then searched for a lyme disease specialist.. I found one about an hour away from me. I got a PICC Line and began my treatment on rocephin and oral zithromax.. I was treated for 90 days on that. I was Ok for a couple of months and then I relapsed.. The doctor then put me onto the PICC again and I was treated with IV Vancomycin and Rocephin at the same time...That treatment lasted 60 days.
Since then I have been in remission. If it wasn't for that lyme disease specialist I probably would not be alive today. While I was sick I never saw the light at the end of the tunnel.. I thought I'd never get better.. but I did.
I still have some symptoms of lyme disease as in CFS (Chronic fatigue syndrome) I still have difficulty with my memory but not as bad, and math with number reversal and anxiety still but I take medication for the anxiety. I do have a very very low immune system but thats a small price to pay for all that I went through.. I'd rather get colds more often then others rather then be sick with lyme disease.
I am working a full time job now, I am getting my life back in order. I plan to go to college soon.. Since I had to drop out while I was sick. There is hope.. I NEVER thought I'd pull through it and I did. I always keep the thought of relapsing in the back of my mind but I know theres nothing I can do about it if I do relapse and I know who to go to. I get tested for lyme every now and then just to make sure Im still showing up negative.
I just felt the need to give all of you that are suffering some hope.. I hope I helped someone see that there is a light at the end of that very dark tunnel. I will continue to post on here from now on because I know that when I was sick I never saw anyone in here who had been a success story.. only war stories.. no offence guys but I know that a lot of people who are in remission do not come to help those that are still suffering. So I will be talking with you guys soon.
<3 Koryn
-------------------- ~*In remission for 3 years!! There is a light at the end of the tunnel, just keep holding on!*~ Koryn Posts: 8 | From: Poke-A-Nose, PA | Registered: Nov 2007 | IP: Logged
Posted by Lymetoo (Member # 743) on :
From a wheelchair to walking!! .. and other stories!
I just joined and am finding my way on the computer. Hope this is the way to reply?
I feel that I am a success in process. I've had Lymes for almost 20 years with the last 10 getting progressively worse until I was unable to get out of bed many days and was too depressed when I did get up to do much but a meal or two each day.
I had done all kinds of alternatives; herbs, acuputure, multiple therapies, the drugs, silver IVs, most of the stuff in Rosner's book and had no herxs at all, except one minor ache for 30 minutes my first time on the AC rife machine. Nothing after that. so was very depressed and hopeless since I wasn't even herxing, how could I get better?
Then I heard of "John of God", a powerful healer in Brazil. The first couple of times I heard about him I let it go. The third time I knew to pay attention. Fortunately my mom financed the trip as I have only SSI and disability for income. I know I am very fortunate to have her help. It was a horrible trip, 30 or more hours flying and in airports where people spoke Brazilian Portugese, which I don't. But I finally made it there and joined my group and leader (who knows the protocol and language).
I wasn't aware of much happening or improvement there or when I came home so thought nothing much happened. However I did finally have a herx, and what a whopper! Two days of intense pain everywhere (except my tongue). I moaned and rolled and cried continually pretty much. I'd never felt such intense pain all over my body. Funny I should think nothing much happened, huh?
About 6-7 months after this I am now working with a medical intuitive who says all the Lymes beasties are dead. Yes they are still in my body and yes they dumped alot of toxins when they died and that's still effecting me; and most importantly they tore up lots of organs and created considerable damage that will take quite some time to heal (which is why I didn't feel any better and thought nothing had happened). But,THEY ARE ALL DEAD! This gives me so much hope and thankfulness. I do consider that she may not have seen them all, so I still treat with the rife machines (AC and DC).
However my focus has changed from "Can anything help?" to "How can I most effectively heal now?" and that's SUCH a BLESSING I can't describe how big.
I am doing herbs to detox, Xango juice (which gave me more energy immediately...I actually woke up in the mornings sometimes!) Also I've started a program of treatment on the BEMER mat that seems to help my nervous system relax so I start smiling about life every time I lay down on the mat. I am so grateful to be healing and on the way up finally after 20 years of going downhill. I now see a future for myself rather than just struggling to make it through until the next day of struggle.
I'm happy to share details with anyone who is interested.
May we all breathe be filled with Light and move forward one step at a time.
Blessings, Healing
Posted by hardynaka (Member # 8099) on :
My 2nd success story...
After re-infection in May 2007 with babesia, bart again, borrelia (with arthritis again), ehrlichia, rickettsia and mycoplasma (according to my doctor), plus intestinal candida, that I believe came from the tick too(because I never had this problem before, and it went easily after treatment, so it was not chronic).
I fell sick in a matter of hours after infected tick bite, that stayed attached for about 9 hours. Every symptom came back, specially babesia symptoms, like a repetition of all I had before (light sensitivity, night sweats etc).
I tuned almost all my treatments with my own muscle tests and then went to my ART practioners to get some supportive things for my organs and homeopathics. But my treatment plan was built by myself at home, with Chinese herbs and other stuff. It's all here in lymenet.
For babesia, it's under "babesia alternative treatment". For bartonella, under "bartonella alternative herbs" or so. I took doxy for a few weeks, but it didn't do the whole job (my doctor gave it to me), I even didn't feel any positive effect from it either, but I was in constant herxes/ feeling bad the whole time after bite, so I can't say it helped/ didn't help for sure. Doxy tested good with ART, so I took it for 2 weeks.
Borrelia: the best thing for me are always Buhner's herbs in all possible combinations , tuned by muscle tests (amount).
Bart, babesia: I wrote here what worked for me (in Medical). Most important: cleansing with chlrorella, MSM, whatever helped (chitosan, zeolites..., rubbing Farah's oils or other oils). Herxes are awful.
The other treatments, all with herbs too, it worked if I tuned with my muscle tests. Eventually, I got symptomless by the end of October 07.
Funny that I thought I was attacking acute bart and borrelia and all the other stuff, but in the end, got rid of my chronic bartonella and chronic borrelia altogether!!
Got a small relapse sometime in November/ beginning of December after sleeping little for a month. Then after a few days of Buhn'ers herbs and other stuff, got rid again of the EM rash that reappeared on my chest.
I'm still fighting fungal infection in my skin, pre-lyme, but it's getting better (but it's so slow...). It's not too bad, but still not 100% gone as I wished.
I'm back to consuming wine socially, full of energy if I'm not herxing from fungi, back to life really, in all senses. My brain got no bad scars, I think. No lyme scar whatsoever (except for having lost two teeth). I'm not in a diet, but eat almost 100% healthy when I can.
I don't consider myself healthy, though, as I'm pretty sure if I get bitten again, I'll fall sick and will need lots of help to get out of trouble. But so far, I'm again symptomless since about December 2007. If I were REALLY healthy, I wouldn't fall so sick so fast like all my neighbors here that get constantly bitten by ticks.
I'm on astragalus, cats claw, sometimes I add other stuff; like now I'm on stephania, just in case. I never stop propolis, cod liver oil, chlrorella, I'm still on cardamon for cleaning fungal toxins, and eventually, milk thistle, or magnesium, or calcium, or trace minerals, depending on what tests good. But that's all.
My little daughter continues totally symptomless, she's learning her 4th language now by the age of 4 (so definitively no brain damage from lyme), very active and healthy. She's also on forever chlorella, CGF, flaxseed oil and propolis or bee products when they test.
Last year, the best tick protection stuff for us were homeopathic Borrelia nosodes LM4, we took a bit of it every week and didn't get bitten by infetected ticks again. Hopefully they'll still work this year and we won't fall sick again, me and my daughter. My husband is a tick repellent himself, never got bitten no matter what he does outdoors.
So my treatment was a combo of homeopathics, herbs, KMT, Buhner's herbs, Chinese herbs, lots of cleansing, phsycho kinesiology (that unblocked some stuff I would never believe it would), that's all, I think.
I also did lots of dental treatments, pulled out teeth that were testing bad in ART (ancient root canals), now I have golden partial protesis in the place of these teeth, I took amalgams off and did chelation for more than a year (soon, it'll be two years of metal detoxing). I'm fully convinced metals played a role on my body being weakened. As for my canal teeth pulled out, I was happy at least for one, as it was causing me dull pain for about a decade. NOw pain is zero.
Best tools for me: own muscle tests (I also posted about it here in lymenet) and ART (muscle tests done by my practioners).
Wishing you all good luck in finding treatments. Each person is so different, so anything that works is great if it makes you feel better! Selma
[ 29. January 2008, 11:22 AM: Message edited by: hardynaka ]
Posted by bejoy (Member # 11129) on :
It's time to post my success story:
I'm finally well from lyme for the past three months, and well into recovery from the effects of lyme.
My recovery took nine months. They were some of the hardest months of my whole illness because I forced myself to stay in heavy herx mode most of that time.
I am still continuing to get well after three months without symptoms, and a very high stress load because my daughter was hospitalized for an accident.
I had borrelia, bartonella, babesia, and klebsiella pneumonia.
I have had tick born infections since I was about seven years old. I have to wonder if the case of "mumps with encephalitis" I had when I was seven was really from a tick bite.
My next door neighbor had bartonella when I was little. I started having bladder spasms and difficulty communicating verbally, and memory loss at that time.
The big bite happened when I was 22 (Over 20 years ago.) Two weeks after pulling off several ticks I started having mysterious bladder symptoms, chronic pain, and fatigue. They got worse and worse over the years.
I fought them off with diet, supplements and exercise. Symptoms rose and fell over the years with my stress level, causing them to be labeled as psychosomatic.
Both pregnancies were nightmare with being unable to sleep, get up, eat, think, etc. My second breast fed child reacted to my high cortisol levels by never sleeping, which kept the levels high until my adrenals crashed entirely. Then lyme took over and I was completely unable to function.
My naturopath put me on Cortef, which gave me enough ability back to pursue more answers. Then he got me a positive lyme test which put me on the road to recovery. For this I will be eternally grateful.
One year later, I have my life back. I think I will be able to get my health back to the point where I will feel energetic again. I'm still fighting off some candida, and may want to test for H. Pylori. I'm still stiff, but no more pain. I'd like to drop the spare 15 pounds, but I think that will take care of itself as I continue to heal.
I can think. What's more, I can feel. I am happy. I can experience something other than anguish, misery, dread, terror.
Life is good. I am playing with my kids, going skiing, running, socializing, working, etc. My house is clean, and my affairs are mostly in order. I'm even homeschooling my middle schooler, and loving it.
My protocol was based on a combination of ILADS, Buhner, and Dr. K. in WA. I am under-insured, have no area LLMD, and was unable to travel. I read two to three hours a day, and put it together myself, with the help of some local practitioners.
I wish you all the very best in health and in lifelong wellness and vitality. I am grateful to lymenet for the information, support, and encouragement that made my recovery possible. I couldn't have done it without you.
Posted by BJK (Member # 13251) on :
This morning as I looked out the front window at our snow covered trees, my wife commented that March was "coming in like a lion", as we're expecting at least another foot of snow today.
I had forgotten...Its March 1st. Its been one year today since I was finally diagnosed and started treatment for Lyme disease.
I contemplated this thought...one year, how far we've come. Its a sort of aniversary.
I dont often take enjoyment in aniversaries, I prefer living day by day with my mind in the present.
As I reflected on the past year, whith its ups and downs, accomplishments and disapointments, I realized that with Lyme my day by day approach to life could be keeping me a bit down.
I feel my pain today, and have had many reminders already this morning that I'm still ill.
But as I reflected back to March 1st 2007, I thought wow, Im so much better now.
To fully apreciate the comparison one must understand, as most here do, where I was then...
_________________________________________________
A typical morning Last year...
I wake up, if I slept at all, lying in a puddle of sweat, sticky and cold. My entire body is in pain, muscles convulsing, head "bobbing", my abdomen is so sore.
Several areas of my body are swollen and ache, I cant bear to go through another day...can't this end....but somehow I sit up after much effort.
New pains begin with the movement of my body and the larger muscles start to cause me to sway from side to side in a twisting motion.
My head is being sqeezed as though in a vice and the ringing in my ears is so loud and unrelenting.
The children are awake and I begin to twitch and convulse with every noise and my head hurts everwhere now.
Confused, I wonder where I am, what am I doing, it hurts to think.
Eventually I figure out..again, that Im sitting on the edge of my bed and its time for the hardest task of my entire day...washing up and getting dressed.
I skip the shower because the 12 foot stumbling walk to the bathroom has exhausted me. My wife helps me dress, Im embarrased for a moment but then dont know where I am or what I'm doing again.
My wife makes a bed for me on the couch and helps me to the living room.
I lie there, wanting to die as the pain increases and my body convulses endlessly, never at rest. My legs feel like bugs are crawling inside..up and down, and every joint hurts.
Then the bone pains begin, as though some invisible force is stabbing me all over with a large blunt knife.
My wife makes me breakfast, something soft. Finally after several tries, my hand is able to clasp the large spoon.
I lower the spoon to my breakfast and as I lift my arm towards my mouth my hand begins to shake uncontrolably and the food scatters into the bowl and on the couch.
In pride, I dont ask to be fed, I just keep trying until finally I get a spoonful into my mouth.
I chew with difficulty as my stiff painful jaw tries to do its job. My face mucles hurt and are drooping.
Then I swallow, my tounge doesn't move the food to the back of my throat well and I try not to gag as I work to get the food into my throat.
Before the next bite, Im lost, why am I on the couch, whats in my hand,
Im scared and start to cry....so lost and in pain, when will it end?
As I write this tears are forming im my eyes, there was so much suffering then...Suffering my wife and five children had to witness every day as I wasted away.
I've come so far...yes Im still unable to work, I cant drive and from day to day I dont know what my body can handle...however....
This morning I awoke, stiff but with little pain today. I got up feeling fairly happy and walked about with no twisting, or falling over.
I watched it snow outside and appreciated the beauty of the drooping, snow covered trees out front.
I played with the dog for a bit. And thought about what Id do today. I took my meds and ate a good breakfast.
I logged on to the internet at all of 31.2 kb's ber second today....argg!
I checked my email and saw a PM from Lymenet, my eyes brightened, this is often the highlight of my day!
I read the message, it was a great start to a new day and wow! I can now read and write again!
I responded very thoughtfully, without confusion, to an email from my real estate agent.
Then, my wife an I kneeled together to pray about selling our house.
I walked around a bit to see how my balance and muscles were today because I wanted to give myself a one year aniversary present....work!
I was a little stiff and had some really small twitches and a headache, but decided I was OK to brave the snow.
I went outside, put a ladder up to th porch roof, climbed up onto the roof (dont tell Dr D...or my Mother ), then shoveled off about 2- 2.5 feet of snow.
Then, I climbed onto the house roof and shoveled off the entire north side! And, as the magician said as he pulled the table cloth out from under the settings, "The flowers are still standing!"
I took a cool shower and sat down to write on Lymnet. No spasms, Im tired but not bed ridden or even close to this....but Ill rest for the remainder of the day just to be sure, I can get some pretty nasty backlashes from phisical exertion.
So, One year in treatment, ingnoring the severe dips in the ride, Im so much better and feel (today ) as though I can handle seeing this thing through.
My wifes heart has slowed down, but I think she used her daily supply of energy up waiting for me to get off that roof!
BJK
"Love always hopes, always perseveres...Love never fails" "But now faith, hope, love, abide these three; but the greatest of these is love"
Posted by bettyg (Member # 6147) on :
Joy and Ben,
thank you both for sharing your courageous lyme battles with us all!
Joy, so glad you are enjoying yourself with family and homeschooling as well.
Ben, you have come a LONG way since last year, and we look forward to more of your story this next year.
Posted by elle108 (Member # 11730) on :
Hello everyone,
I haven't posted here in a while, and some of you may recall that my daughter, now 19 was finally diagnosed with Lyme and babs about a year ago. Well, after a 3 month search and TOTALLY because of this website, we found a LLMD in NJ who has (knock wood) worked nothing short of a miracle.
In Jnauary, she started college...only 1 semester behind her peers. SOme of you may recall the battles I had with the high school to allow her to graduate and attend her senior prom. Those few shorty months ago, getting out of bed was a major accomplishment for her!!
Dear Lymenet community,
I want to thank you all from the bottom of my heart for all of your support, guidance and invaluable information. Most of all, for introducing me to the concept of a LLMD ... without which I shudder to think what her life would still be like today.
Hi Gang I had stopped posting (almost) because i had lost hope of a cure,and coulden't lead people on any more.
Then i gave myself 14 months benzathine Penicilan shots.For my weight 2.5 cc twice a week injected in my bottom by my self.
With a egg timer i first stuck my butt muscle,and slowly pressed down the plunger over a 3 minute time.
Not fun at all !! Sometimes i got a dull needle and the blood ran down my leg .
One time i hit that main nerve that passes across your butt and fell on the floor.while it felt like a thousand worms were under my skull in my brain. Syatic nerve.
I would not stop ,but at 14 months I got 3 dull needles in a row and i STOPPED.
I had had enuf!!!!
And it was enuf no more lyme stuff!!!
AAAAOOOOO!!!!!!
UPDATE The remission lasted 0ne year ,now I am looking for another antibiotic for long term use.
Or perhaps 2 years Benzathine Penn. G
MADDOG
[ 11-30-2009, 07:54 PM: Message edited by: MADDOG ]
Posted by calamtykel (Member # 13344) on :
I'm a success story, as is my son! I have been meaning to come on here and post this, as I looked to this board for support during our ordeal last year!
We live in rural Northeast NJ - tick capital of the world! Briefly, last May (2007) I began to have joint pain. I got more tired and lethargic and it all blew up around the fourth of July. I felt sick when I went to bed. An hour later I woke up shaking, dizzy, with sort of like tunnel vision - partial blacking out sort of thing. My pulse was rapid and I was nauseous but didn't throw up. I could not stop the feeling of shaking and these sort of muscles contractions where my muscles would tighten up every time I would try to rest. My husband took me to the emergency room. I was fed a bunch of lies by the ER doctor who examined me and clearly gave me the feeling that I was wasting his time. He told me that he'd do a lyme test and if it was positive I'd find out in a few days and he sent me home.
My elisa came back negative and I went to my regular MD who did a western blot. I continued to feel very very ill. I knew this was not a virus - I just absolutely 100 percent KNEW. Western blot came back neg. I told my MD that this had been going on for six weeks and could we just see if abx would clear it up? He refused, told me I was fine and healthy and that I'd get over it. Never mind that in all my 11 years of going to him, I had never once asked him for any sort of antibiotics or medication for me or any of my four children.
But I was helpless, so I believed him and continued to go downward. I had floaters in my vision, brain fog, leg pain, especially in my hips and one leg, and all the other classic lyme symptoms. My husband, who DID test positive for lyme, lied to our doctor and said that his pills fell in the toilet, and had it refilled for me. I took his amox and was better in a week. I had my life back! I finished the prescription and thought I was through with it all.
Two weeks later it crept back. This time I went to a doctor in town who a friend recommended. He listened to me - really listened, and said that the tests don't mean squat and began me on abx again because he believed it was lyme. Again, the amox wiped it out or so I thought.
Meanwhile, my son was diagnosed through a positive blot in September of that year (three months after my symptoms began). He is allergic to amox and developed an allergic reaction to the doxy within two weeks. Doctor began him on zithromax.
Meanwhile, out of desperation, I made a decision that completely changed the course of our fate. I took my son and myself to our chiropractor/nutritionist. I knew from a friend who had been seeing him for her migraines that he might be able to help us. At first I laughed at her and his testing methods, but when he cured her migraines, I knew I had to try something because this was clearly not working for us.
He does nutrition response testing. He tweaked our systems with supplements and a very strict sugar free/low glycemic diet. This man struggled with lyme himself for a long time and he adopted these testing methods for the body when he himself was healed this way by another practitioner. When I began seeing him, I also realized that I was still not better and I was given a round of doxy. My son also, had his symptoms return and he went on zith again for a month.
When my prescription ran out, I was still symptomatic but not as bad as before. Friends who had lyme encouraged me to call the doctor and see if he would give me more doxy. one friend even offered to get me doxy under the table if he wouldn't refill it. I struggled with asking for more meds or continuing with the diet and supplements and opted for the latter which did include a parasite removal program.
I am happy to say that within another couple of months I was symptom free and so is my son. I have not had any symptoms at all in five months. My son is no longer testing for bacteria in the nutritional response tests. Was it cheap? No. Was it easy? No- (try keeping an 8 year old away from sugar including fruit sugar!!) Was it worth it? YES!!
I have learned some thing in our journey: First, that according to our nutritionist/chiro who treated us, lyme and a parasite go hand in hand. That's one reason it won't leave completely - as the parasite dies, the bacteria is re-released. Secondly, the bacteria feeds on sugar! Cut the sugar, starve the bacteria. This also includes fruit sugar as well. Third, the immune system CAN be tweaked to fight this bug, but not alone (unless you're super human!) The antibiotics are necessary, at least from what I saw with us. Once our systems were functioning well enough, they were able to "take over" and get rid of the rest of it.
We may still have it lying dormant somewhere - many say that Lyme never really leaves, but we continue to stick to our diets and remain healthy.
I have seen many, many more benefits to the program we have been on including a child who had previously been the king of colds, sinus issues and viruses go through a winter of NOT ONE single cold! I have four children and he was the healthiest one all winter, which has never, ever happened before. I really cannot be more pleased with the way our bodies have responded to the supplements and diet.
I don't want to sound like an info-mercial here or some kind of health nut, and I dont' want this to sound like the "silver bullet" cure all. My nutritionist said during the first visit "I cannot cure your lyme. All I can do is to build your system to fight it." I have nothing to gain by sharing this except that I felt an obligation to do it and share our story. There are answers out there but you must seek them out and the medical community isn't going to help you do it.
If you are in northern NJ and are interested in my nutritionist or the doctor who I saw who gave me the antibiotics without a positive blot, I would be glad to share them. My email address is [email protected].
Posted by MaryL (Member # 11997) on :
I'm a frequent reader of this board, but haven't really posted much. I wanted to post my success story to share with everyone and let you know there's hope of getting better, it can happen.
I was diagnosed with Lyme in May 2007 after being sick with strange symptoms for about 6 months. Dizziness, jaw pain, confusion, brain fog, forgetfulness, arm pain, and extreme fatigue were my main symptoms. I never suspected Lyme and was surprised when my doctor, who ran a bunch of tests, told me I had it. (I was one of the lucky ones who test positive)
I grew up in Western PA and had heard about Lyme Disease, but the most I knew about it was something about a bulls-eye rash. I wasn't prepared for how sick I was about to get!
I'm so thankful to everyone on this board who provided lifesaving information for me!! You have all educated me about this disease, and about the nasty politics behind treatment. I've been able to pass along that knowledge to everyone I know (even when they don't ask!), and hopefully we can raise awareness about diagnosing and treating Lyme.
Back to my story - I was diagnosed in May 2007, started on oral antibiotics and sent to an Infectious Disease doc. I've heard the horror stories about them, but my doctor was amazing!!! He was knowledgeable about the disease and gave me IV Rocephin, then continued with the orals after, until I got better.
It took about a year, but I'm so happy to say that I've been symptom-free for 4 months now!! Completely healthy. I had gotten to the point where I didn't think this was a possibility - I thought that I would be sick forever.
Keep fighting! I know how horrible this disease is, and I want you to know there's a light at the end of the tunnel. Thank you to everyone on this board; you are all amazing people struggling with an awful disease. My prayers are with all of you to get better and to be able get back to a normal life. It can happen! Posted by amybscher (Member # 15858) on :
Hello,
I am copying and pasting this from another thread I recently posted on. It fit into that thread and also "success stories." Congratulations to everyone who is able to post on this success threat, and let's keep working so more and more people get the opportunity.
I am a patient from CA who went to India for embryonic stem cells. I never post on these boards but I had heard about this thread and thought I'd share my story.
I am doing amazingly well. I've had chronic Lyme (Babesia and Bartonella) for 7+ years and my complications included neuropathy, arthritis, tremors and twitches, brain lesions, cardiac problems, chronic nausea, etc.
Post stem cells, all of my pain is gone, I am off all narcotic pain killers, all tremor medication, all heart medication, my brain lesions improved greatly (as measured by SPECT scans), my food allergies are gone, and the list goes on. I'm finally able to be off of antibiotics for the first time since my diagnosis.
I believe this is possible because of my previously aggressive antibiotic treatment and the new improvement of my immune system with the stem cells.
Before deciding to go to India, I failed all treatments that I tried (including almost 100 hyperbaric oxygen sessions). I feel that antibiotics did a good job to lessen the bacterial load, but my body was so deteriorated from the disease, something needed to repair it from that perspective. Embryonic stem cells did that for me. It is like I am a new person now.
Since I was the first patient to go through this, we don't know what the future will hold. But, so far, I've had a six month stretch of health and that's six months more than I ever thought I'd have again in my lifetime before I went to India.
The doctor's technology is unique as she is using ONE donated embryo to treat and endless number of patients. She is the only one that I'm aware of in the world using embryonic stem cells in human application (she just filed a patent). Her stem cells are 100% pure (meaning no chemical, animal feeder cells, etc.).
I can't say the treatment is right for everyone but it is thus far, the biggest blessing of my life. I hope this information has helped those who are interested understand it a little better.
It is not a cure for Lyme (stem cells won't kill bacteria) but I believe it will strengthen the immune system to better cope. My personal opinion is that much of a Lyme patient's pain, fatigue, etc. after they have had proper treatment, is not necessarily due to active bacteria but the devastation of what has happened in their bodies over the years (degeneration of nerves, muscle, etc.).
I'm always available for questions if anyone would like to know more. I'm going back to India in July for 3 weeks for a booster series (I was there for two months the first trip). I blog at www.healthcarehacks.com and update often for anyone who would like to follow.
Many blessings, a
Posted by sonicbmx (Member # 12949) on :
hi all -
just reposting my latest update as i wrap up HBOT.. enjoy!
-----------------------------------------------
here's a brief recap: my symptoms began Nov05 after fracturing my foot, symptoms increased Apr06 after another flu bout.
things got worse in Oct06 after shoulder surgery. i saw 35 Drs and made 150 office visits.. no one could help me.
Dx'd with CFS in Apr07 and was bed ridden off and on. i gave up on Drs.. started doing my own research and reviewing my labs.
Dx'd myself w/ Lyme in Jul07 thanks to IgeneX (via WrongDiagnoses & LymeNet). found an ILADS LLMD right away.
Dx'd w/ Babesiosis Aug07.. officially began oral Tx in Sep07. Dx'd w/ Neuroborreliosis in Oct07.. began IV Tx 26Oct07.
------------------------------------------------
hello brothers & sisters..
i'm 24 days into 30 consecutive days of HBOT treatment and i feel great!
rode the bmx track WED night and for the first time in 2.5 yrs, i had NO thigh muscle fatigue (4 days prior i did elsewhere).
i sprinted 40 yards at least 12x and rode the entire track effortlessly (compared to my last track outing in April).
did a beach street ride SUN from South Mission Beach to La Jolla Cove.. never took a break or slowed my roll.
didn't have this energy on my last beach outing (Sep07).
this is not an ordinary ride.. it's aggressive and i ride at a rapid pace, do a lot of jumping, and coaster wheelies.
OUTSTANDING DAYS OF HBOT: day #3: left wrist pain.. similar to arthritis. the pain passed 2-3 days later.
day #5: pelvic/low back/tail bone pain. this pain continued for several days.
day #17: right ankle sore. this may be related to trauma from broken foot and poor physical therapy due to illness.
i felt pretty flat at times during weeks 2 and 3.. was probably herxing a bit.
seeing my sports massage therapist 4x (every 10 days for 1.5 hr deep tissue rubs).
seeing my AK Specialist 2x (every 15 days). followed by my sports massage therapist.
i find massage and chiro care highly effective and beneficial throughout HBOT.
i'm still in appeals with insurance on HBOT but i'll keep you posted. also going in for State Disability appeal 03Jul.. wish me luck!
getting well and staying well is MORE than a full-time job. i have tapped every financial resource i have and work hard at getting well 24/7. there are absolutely no short cuts w/ Lyme or TBI's.
all for now.. best wishes. -- sonicbmx
Posted by griswoldgirl (Member # 5365) on :
There is most certainly hope. I lost my job, my friends, my marriage and my life due to 14 years of undiagnosed lyme. After my diagnosis in 2001, I was on IV antibiotics for 8 months and oral for quite a while. I am an ultrasound tech by trade and was unable to work at all for almost 3 years at the end.
Today I live at the beach, enjoy being single for the first time in 20 years, and work full time in my profession again. Am I 100%? No. But I am med free!! I was on fetenyl patches and oxy ir for break through pain for 8 years. I was diagnosed bi-polar due to this illness. i as on anti depressants and lithium just to name a few meds-they used to total over 15 of them. I take nothing stronger than an occasional advil and some melatonin for sleep. I still run tired at times and am sore after a 12 hour shift at work, but I am not flat on my back crying any more! ( and heck I am pushing 50 so aches and pains I guess come with the territory)
I have some residual brain farts, a lot of arthritis, some permanent damage to my liver but nothing I cant live with.
Keep up the good fight!!
Cathy
Posted by bettyg (Member # 6147) on :
marie and cathy, WELL DONE TO YOU BOTH!!
HIP HIP HOORAY ....congrats big time!
marie, great you were able to accomplish what you sent out to do, and wonderful, informative lyme article !!
thanks to each of for posting! bettyg Posted by GraceT (Member # 16558) on :
I am new... What is HBOT? Thanks.
Posted by catskillmamala (Member # 12536) on :
My 5 year old daughter is probably going to come off of mepron/zith after 18 months of treatment after her next visit to her LLMD.
Yesterday, as she was keeping me company for my IV infusion she was chattering away about how much she is looking forward to turning 6 and 7 and 8 and 9 and 10 and 11 and 12 and 13, etc.
WOW. This is MUSIC to my ears. She is looking forward to life. Two years ago at this time, she wanted to die. At three years old she wished she was dead and said so every day. Her life has been saved.
Here is the list of RESOLVED symptoms: fatigue, headaches, joint pain, stabbing eye pain, chest pain, abdominal pain after every meal, burning urination for every pee, major constipation, OCD behaviors, bi-polar, depression, suicidal thoughts, self-hatred, anorexia, night sweats, unexplained fevers.
Posted by Windmill (Member # 15404) on :
Hi all:))
Ive been wanting to write in here for so long but have been feeling cautious not wanting to jinx my recovery or make any bold statements about being well. So i gave it more time and feel like its time now to write:) I got lyme at age 19 but went undiagnosed for 10 years during which I made it through university by the skin of my teeth and then afterwards got extremely ill and spent several years bedbound, in extreme pain, with severe stomach issues, barely able to speak. I couldnt watch tv or read or do anything really as it all made the pain worse. the only thing i could do was listen to audiobooks, they helped alot. I finally got diagnosed with Lyme 2 years ago after seeing the discovery health episode on lyme and also reading a few different people's accounts on the internet of the unreliability of lyme testing. I had been tested twice with the basic elisa and had been negative both times. I was lucky to find an amazing lyme doc and for the first time with a doc to be in really good hands. my recovery was tough but i was so happy to finally know what was wrong with me. I felt some improvement initially and got big herx reactions so i felt i was on the right track. mostly on treatment i felt pretty crappy, i was able to be up and about around the house but was feeling pretty rough still most days. I did 9 months of IV treatment and that seemed to help clear the brain fog. then earlier this year i was treated again for Babesia and also started a supplement called D-Ribose both of which dramatically helped my energy levels and general feeling of wellbeing. I improved so much that by early summer i was able to return to work and ive been working now all summer, doing 40 hour weeks and feeling better and better over time. I still have along way to go, im working on my adrenals which have taken a beating due to the lyme and also have alot of stomach issues from all the antibiotics but i have a great naturopath who is also helping with those issues. Im on the buhner protocol now and do a small dose each day of colloidal silver recommended by my lyme doctor. I still have to be very careful not to overdo it and to take it fairly easy at the weekends. I still do my epsom salt/hydrogen peroxide baths and take all my suportive supplements so i have a really good support network. I couldnt have gotten through this illness without the love and support of my family and an amazing boyfriend who has stayed with my through the entire illness despite the fact the I had to move to live with my parents and he was far away in London, UK. So many times i hoped i would get better but with so many days of feeling awful during the recovery process i wondered was it ever going to happen. I would notice small improvements and wanted to believe that they meant something positive but thought maybe i was just imagining it. however they have continued to add up over time and i am getting better and better every day. I just wanted to write this for anyone out there who is in an earlier stage of recovery than i am, i know how rough it is and how hopeless it can make you feel trying to keep going in this ongoing battle but there is light at the end of the tunnel, you will get there. my body has been through so much but i am healing every day. I know it ll be a long process to be fully healthy so i will continue to keep working at it but i am leading a much much more normal life now. Im doing a very challenging job and planning a trip to my home country (Ireland) for a week in Oct. My boyfriend is moving to the US this year so we are finally going to be living together again. So many great things are happening so i try to remember that staying healthy depends on keeping a good work life balance, eating healthily and continuing with all the supportive supplements and therapies that have helped me to get well. Sometimes (or maybe alot of the time) it means learning to put yourself and your health first in order to get the rest you need and learning to say no to things that you do not have the energy for.
so to anyone out there who is feeling hopeless, its tough and horrible alot of the time but you will get there and it will be more than worth it when you do so hang in there, never give up!
lots of love to all my fellow lymies, keep on keepin on;)
Windmill
Posted by Meg (Member # 22) on :
Wink9 Frequent Contributor Member # 4516 posted 02 May, 2006 07:00 PM
Thought I would come back and see if there was anything I could help with. My mother just started her treatment last week after constant nagging by me to stop accepting this as old age!
I had debilitating Neuro Lyme and Babs. Had it probably 5 years before diagnosis. Took 2.5 years of solid antibiotics. Had to quit my job, leave law school, withdraw from society, and really re-define life.
I couldn't walk and I couldn't make out sentences during the first few months of herxes, but I could stay on a horse, which was a miracle. I was so Type A, to not have had this outlet, even just sitting there walking around like a snail, would have destroyed me. I also had a horse survive Lyme who I looked to for inspiration, as well as the best family and friends ever. OK, who am I kidding, not many people understood, but the ones that stood by me mean everything to me now.
During Flagyl I was a suicidal maniac. I would scream, cry, wrench, hallucinate . . . I had to be supervised by hubby or Mom. Lexapro helped some. It was like demons were scratching through my pores. All I can do is shake my head to think of it now.
Saving grace came when I finally pushed for an IV of Rocephin. Took it for two months after 2 years of pills. I am firmly convinced if I hadn't waited that long, the strength of the IV meds would have killed me. I had to wait that long unfortunately to kill off enough bugs as to not overload me.
I am now 80% healthy after coming out of treatment last August. There are still days where I really lag. I think of it like people with Epstein Barr. It is a hinderance, but I have my life back. I can work all day long now, have intelligent conversations, handle driving, movement, most sounds, light. My muscles hurt now like a 50 year old instead of a 90 year old! (I am 30) It is all manageable. Life is worth living again. I have joy and the ability to appreciate it.
I always told my family if it wasn't for them, I would never have fought through the disease like I did, not just for me. But now that I am well, I sure am glad I did fight, for ME.
I will try and check back if there is anything I can help with.
Wink9 Frequent Contributor Member # 4516 posted 18 August, 2008 07:28 AM
Hi friends, Just wanted to check back in and lend some hope to anyone having a particularly rough day.
It is now 8/08 and I am still in complete remission. I feel great and I even feel "normal" once again. I returned to my full time job as a horse trainer and could work regular days until about 6 weeks ago when . . . .
I became pregnant with our first child!
There is hope. I know you feel like you are in hell, and frankly, you are. There is no minimizing it. I make no qualms about the fact that it almost killed me to anyone that will listen. But it is able to be beaten!
I always just thought I was a regular person until I saw how strong I became living through Lyme. You are all JUST AS AMAZING. Keep your chin up. It is possible and so worth it.
Much love, Wink9
Posted by Naomi Adams (Member # 17493) on :
Hello Everyone:
I just wanted to add my own post to this topic. I had Lyme Disease for 7 years before I got a clear diagnosis. I have now completed 14 months of antibiotics, with extensive naturopathic support and low-dose heparin therapy. So far, I have gone from barely able to stand up to walking at least a mile a day and learning to swing dance in the evenings!
I just started a blog a few weeks ago. I explain what I've been through, what worked for me and what didn't, and how I've kept my spirits up this whole time.
If you want more details on my story, would like some inspiration, or ideas for detoxing and other alternative therapies, please read my blog at lymestory.com
Thanks! web page Posted by kickatick (Member # 17446) on :
I Think I Kicked It's Butt. Mine like all the LYME stories is quite long and complicated. I think i cured myself quickly with no help from Doc. My family Doc laughed at me at first then she changed her tune later and clinically diagnosed me with Lyme.She said if i need help get into her office pronto but i was doing just fine on my own protocol.She even said Samento is a smart choice so i decided to give it a shot on my own. I am going to do this in point form to make it easier for people to understand. July/07 Terrible itchy rash from neck to anus,no bullseye. Night sweats,chills,general malise, 1 year duration. May/08 Sudden onset arthritis, Doc said Rheumatoid with deformation. The test results from Xrays and R/A factor were "0 " arthritis. Other typical symptoms were severe wandering joint pain and a creaking cracking neck.My Lyme gradually entered into very painful neuropathy in my arms and my hands sometimes my legs.I also experienced wierd crawling feelings inside my ears. Very loud hisssing ears for months on end.Sore teeth and sore eyes were daily issues and i hated every minute of this garbage! On July 10/08 i Started Samento and built up quickly to 20 drops/day and herxed like hell so i cut back to 15. added Emu oil internally. added Curcumin and garlic. added P73 oil of Oregano. added olive leaf extract. added tons of red wine. added alpha lipoic acid (super for neuropathy) added amethyst biomat OMG! saved my butt..slept every night almost all night. added homemade highbush cranberry juice(no additives) it is now Oct 2nd. I am free! I am never going to stop Samento or red wine or cranberry juice or my biomat.Those are good things and i enjoy taking them.The Samento took my arthritis away in 3 weeks flat.The knobs and all.I realize i was not a long term case But my wife (nurse) and i did a accurate diagnosis and took the bull by the horns and got aggressive.I firmly believe that abx's are useless against this disease but that my opinion.If anyone requires more detail PM me! Point to ponder. I didn't get sick until after i quit drinking my own organic red wine.I have been back on it now for over 2 mths and feel wonderful. I feel my liver had no problem with the wine but i was only a true Lyme case for 14 months. I let resveratrol do its work and the alcohol really took the neuropathy pain away.Since the wine was organic with no metabisulphites a hangover was non existent.Bear in mind i was not near as sick as a lot of other members by reading their posts but my protocol worked as long as you catch the disease soon enough.I am sure now Lyme is in remission and most likely in cyst form i am looking for advice on what i should do next? I am thinking that if i stay on Samento and other supplements for the rest of my life i could be one happy camper?
[ 03. October 2008, 07:56 AM: Message edited by: kickatick ]
Posted by florida30 (Member # 17579) on :
My success can be attributed to:
1 yr of doxycycline / Flagyl 3 months of IV rocephin 3 years of Bicillin shots
99% of all of my symptoms cleared up, except numbness in the face and insomnia, but I now lead a normal life and have had no relapses .
A little background:
I was sick for six months and had many hospital visits before I was diagnosed, so I had serious neurological problems including insomnia, memory loss, facial numbness, vertigo, etc. including an inflamed heart and many other issues. I was 22 years old when I was bitten and their was no rash. My roommate did get bitten as well and he did have a rash, that is the ONLY reason I new to ask for a lyme test. I was lucky, because there was no rash or visible tick.
I first went to a general practitioner that put me on low dose doxycycline after I tested positive for lyme two times. He stopped treating me and said he didn't know why the doxy wasn't working. I then took it upon myself to find a lyme specialist who put me on high dose doxy, penecillin, and flagyl. That helped a little bit, but wasn't a cure. I then looked for a doctor that would prescribe IV antibiotics and thankfully found an infectious disease specialist that did prescribe them for me. Because I tested positive so many times I had no problem getting the IV antibiotics. That helped a little bit as well, and finally I went to a lyme specialist who is a neurologist and they put me on bicillin shots twice a week. Over a 3 year period this helped the most, but it was a very long road. My suggestion: excercise when you can and stay positive even though it is hard.
[ 03. October 2008, 04:31 PM: Message edited by: florida30 ]
Posted by catskillmamala (Member # 12536) on :
I will cross post to success stories, but for those here who need good news:
Our dd was discharged as a patient from the Best Pediatoric Lyme Doc!!! She was in tx for 21 months. He dx her clinically with lyme and babesia (confirmed by labs). She was on zithromax and mepron (yuck). We didn't do much else other than good diet.
ALL SYMPTOMS are gone. She had joint pain, overwhelming fatigue, major depression, bipolar, skin light and sound sensitivity, stabbing eye pain, abdominal pain, chest pain, shortness of breath, disturbed sleep, burning urination, major constipation. We were all living in H3ll, if you know what I mean.
She had been treated with 6 weeks amox post tick bite but the co-infection prevented her from kicking it.
We know we're not out of the woods. She could relapse or be bit again, but she's SO MUCH BETTER. Her life has literally been saved. Thank you so much to lymenet for helping us every step of the way.
Posted by Meg (Member # 22) on :
Monica Frequent Contributor (1K+ posts) Member # 224 14 March, 2006 07:01 AM
Here is a Lyme success story as reported to me via e-mail by a friend. The victim lives in Western NJ.
Had a nice conversation tonight with the owner of an Italian Restaurant.
I have known her for about 25 years. About 10 years ago, she suffered very much from Lyme disease. I told her about you and the problems you are faced with daily.
She said she had 6 terrible years, taking up to 17 pills daily, mostly antibiotics, for several of those years. For the past 3 or 4 years, I know she has been feeling wonderful and does just about anything she wants to do, including taking care of her new grand daughter.
She told me to tell you to keep working hard at getting better because you will get better. She said that when she was first aware of what her problem was, she was in "stage 3". I told her you were fighting.
I also mentioned work and she said "work is impossible". I know her husband and family (two boys) helped her a lot.
Posted by Meg (Member # 22) on :
chlorophyll Junior Member Member # 966 posted 28 May, 2008 12:34 AM
This article about chronic Lyme is in June's issue of Self magazine. I was fairly impressed with the way they covered the topic, especially for mainstream media. And, it's a success story - something we all like to hear!!!
DD was taken off of zith/mepron in November after 2 years tx.
She's better, she's great. NO PAIN. NO Psych issues. No irregular heartbeat, fatigue, etc.
She's six, in Kindergarten and doing great!!!!!
Just want to let people know so they will see there is hope.
As for mom (me) I'm still on ceftin/zith, but the good news is that I'm working full time- WOW! That's after being unable to work, drive or parent for most of the prior year.
There is a life beyond treatment!!! Stick with it folks.
Posted by Dekrator48 (Member # 18239) on :
Hi everyone,
I have only been treating for 8 weeks now.
I couldn't believe it when I woke up this morning and realized that I had actually slept for 7 straight hours without waking up!!!
2 weeks ago I also had 2 nights where I slept for 6 hours straight.
I have not slept for 21 years, so this seemed like a miracle to me.
Normally I was lucky to get 1-5 hours of very broken sleep.
My insomnia was really bad the last couple years....couldn't get to sleep and if I finally did, I couldn't stay asleep.
The meds/supps I am taking that are for sleep right now are:
(update 4/10/09: I have increased the sublingual melatonin to 10 mg at 10 pm)
I also have been trying to dim the lights and get off the computer by 9:30 pm to let my mind rest and hopefully help melatonin production.....I'm a little late tonight though.
I am hoping that this is my first sign of improvement.
note: check with your LLMD for interactions between meds and supplements....for instance a person taking a SSRI or MAOI antidepressant should not take these supplements.
[ 04-15-2009, 09:07 PM: Message edited by: Dekrator48 ]
Posted by ThatColorGreen (Member # 16016) on :
After 15 years of being undiagnosed, i am currently in my third month of treatment (with PICC line and oral abx).
I must say that up until a few days ago, I felt that there was not much hope for getting back any 'normalcy' in my life.
However, after my first dose of IV Levaquin more than kicked my a$$ on saturday, i woke up the next day feeling good. and the next day and the next!
I'm starting to fade back to all of my symptoms, but I was able to grasp the true possibility of me getting better.
Also, last semester, I was having a very difficult time with school. In particular, calculus.
As my lyme had progressed, the subject that came so easy to me had become the most difficult.
I would like to say that I am retaking calculus this semester and just received a 100% on my last test. In fact, I have gotten two 96%s and one 95%.
I can feel my brain coming back! It's a wonderful thing and I had been so skeptical.
So know that there IS a future. It feels so good to believe it!!!
xoxo ~Green~
Posted by Dekrator48 (Member # 18239) on :
Hi ThatColorGreen,
I am really happy for you, that you now can really feel the hope that you needed!
Congrats and I hope you just keep improving!!!
Posted by bettyg (Member # 6147) on :
tincup's post
little girl ... rocky mountain spotted fever, etc. MISDIAGNOSED OVER & OVER ...
lengthy & lymenet members helped mom get dr. to dr. jones, conn.!!!
Posted by CD57 (Member # 11749) on :
I don't want to jinx myself but did want to post something that will hopefully give those out there struggling some optimism.
I am about 75% better. I was very ill, had Lyme likely since teenage years, rebitten in 1996. Sick since 2005, pregnancy made it all come out. Heavily neuro.
I attribute this to: 1) three different LLMDs and knowing when to switch 2) Doing IV. 3) myself/following my instinct 4) really, really good probiotics (medical grade) from the beginning - something I learned here on Lymenet! 5) A mood stabilizer/anti-seizure med 6) Friends I've made here and on other boards, and all the ideas we've collectively come up with as regards treatment.
I'm not out of the woods by any means, I still have to work on the illness and do clean-up with perhaps mold and metals. But I am enjoying life again and Lyme is not always the first thing I think about every morning anymore.
There's hope!
Posted by nenet (Member # 13174) on :
Posting links to these stories here, since I haven't seen them copied here so far. I hope that's ok with everyone.
New members need to have an easy place to find these stories so they can get a sense that people are getting sick, coming here, getting treatment, getting better, and moving on. Otherwise, they only see a slice of the whole picture.
It's been a while since I posted an update. I am happy to report significant improvements and I have been symptom free much of this year including a 3 month break from Abx.
In June I began (hopefully) my final 90 day round of Abx (Suprax, Zith and Flagyl). I'm herxing as expected and I feel like poop.. amazing how quickly I forgot what it felt like!
I had 2 major setbacks this year (unrelated to Lyme). MRI detected 3 bulging discs (lumbar spine) in JAN, followed by right leg issues in MAR.
Things have since improved thanks to extensive therapy (Spinal Decompression, ART, Massage, Chiro, Acupuncture).
For the record, here's a brief recap of my history: minor symptoms began Nov05 after fracturing my foot. My condition worsened Oct06 following major shoulder surgery.
Chronically fatigue and bedridden by Apr07. Self-diagnosed w/ Borrelia in Mar07... denied clinical Dx and treatment by numerous Drs for several months.
Sought LLMD in Jul07 and began treatment in Sep07.
Recent testing (Mar09) supports how I am feeling these days. I hope you all are having similar experiences or at least realize your potential and the possibilities of recovery.
i am by no means cured but i definitely have my illness under control and i'm headed in the right direction.
C3a Complement Protein: 137... (was 221 in May08). Labcorp Test #840702
C4a Level: 1759... (was 4034 in May08). Labcorp Test #857334
CD-57: 65... (was 32 in Jun07). Labcorp Test #505026
Mercury Blood: None detected... (was 5.2 in Dec07). Labcorp Test #085324
Vitamin D (25-Hydroxy): 45.2... (was 31.1 in May08). Labcorp Test #081950
I will share more of my thoughts concerning Lyme care and treatment based on my experiences in the coming days. Hopefully someone will benefit from it... stay tuned. -- sonicbmx
Posted by lymers (Member # 21512) on :
Hi everyone,
I just wanted to give everyone a little hope today. I haven't posted here in a long time, but I wanted to let everyone know that getting WELL is very possible.
I had misdiagnosed lyme, babesia, bartonell and ehrlichia for over five years.
After I had my son, I started to really go down hill with memory loss, derealization and a lot of brain issues.
I have now been in treatment for lyme and coinfections for one year and four months and I am almost 100%.
The only time I have symptoms at all is when my lyme doctor changes my meds and I herx. However, even now, my herxes aren't severe like they were for many months.
In fact, my lyme doctor tells me that after just a few more months of treating the coinfections very hard, I can get pregnant.
It's been a really long road and it's not over yet, but I'm living a really nice life now and I feel better than I have in years! You can to just keep at it and try to stay posistive!
Lymers
Posted by troutscout (Member # 3121) on :
A Champion Overcomes-Attitude is EVERYTHING
Year 1) I woke up paralyzed 7 years ago this Sept. Was then diagnosed with end of Life (suspected MS/ALS) Stage of unknown etiology.
Year 2) Given a death sentence the MD's told my wife to move back home for familial support the following September we did.
Year 3) On our 15th Anniversary (9/9/1988) we found a lump that turned out to be 3rd stage breast cancer. Two months later we found out our children had the same infection of the brain that I had. A small car given to us by a Business partner exposes us to Carbon Monoxide thru a broken manifold and rusted out floor boards.
Year 4) We find out that the house we bought for me to die in was loaded with mold. A car our friend gave us title to exposes us to Noxious Carbon-Monoxide and burning transmission fluid caused by a leaky exhaust pipe and leaking transmission. Kris completes her Allopathic Cancer regimen and starts a Natural path to permanent healing.
Year 5) We file bankruptcy and leave all of our worldly goods behind us as we give the mold infested house and furniture over to the bank. The car we purchased (with a loan from my Father fills with mold from a leak in the front windshield/dash area)
Year 6) Due to a Mishap caused by the exiting Occupants we have to cancel a lease and are left homeless for 2 months (I pawn my wife's wedding ring to pay the deposit on a Duplex) Two months later a friend offers a business Opportunity to me....I pawn MY wedding ring...this time to pay a $175 licensing fee. 9 weeks later I get my first paycheck ...on the same day that we filed Bankruptcy 2 years beforehand.
Year 7) Three years after bankruptcy, 18 months after being homeless and 12 months after earning my first paycheck with this company...I earn $22,600 in one month.
Earlier in the year, despite tremendous physical discomfort from the infection that has ravaged his body for over 30 years...Kent fulfills a promise he made to others that suffered from the same affliction over 6 years before...that he would return to the world of sports once again and compete at the National level. In April he starts a regimen to help him regain his strength by July to compete again. At the regional Track and Field Event despite suffering from cramps, diarrhea and heat exhaustion in the 105 Degree Heat Index he qualifies to compete at the National Level in Long Jump and the 4 x100 meter Relay. Injured he withdraws from the National Games held in Colorado Springs, CO.
Kent is flown throughout the U.S. as a Featured Speaker at several Business Seminars.....
Year 8) Coming this October My Family and I will be featured on a book titled, "You Will Overcome" 52 Inspirational Stories of People Overcoming Great Challenges. Our Chapter is Entitled, "With This, I Can NOT Fail!" www.IcanNotFail.org
This NOT a Solicitation.....just one families story...that stills goes on.
[ 08-28-2009, 09:19 PM: Message edited by: troutscout ]
Posted by 22dreams (Member # 17846) on :
Woman fights for Lyme treatment after months of diagnosis denial
The Sacramento Bee
September 1, 2009 E-mail Print Share Text size
SACRAMENTO, Calif. - She wouldn't use the wheelchair. Anything but that. The bulky walker was bad enough, but at least she could retain a semblance of her former mobility.
Yeah, Pamela O'Kane was determined -- stubbornly so -- to get back to normal life after another stay at the hospital.
This one lasted 10 days in the late summer of 2007, and doctors still had no definitive diagnosis to explain and treat the uncontrolled, episodic spasms in her legs and arms, the partial facial paralysis, the weakening of her reflexes and the troubling 35-pound weight loss.
O'Kane, a 48-year-old instructor at California State University, Sacramento, suspected that she had somehow contracted Lyme disease -- a potentially debilitating infection transmitted by ticks -- at some point in 2006. All the symptoms were there, and her Lyme disease specialist detected two co-infections that usually accompany the disease. But the test for Lyme disease came back negative three times.
Which frustrated O'Kane to no end. Here was this perfectly healthy woman -- a national-qualifying, age-group triathlete, no less -- rendered nearly an invalid who could barely stand up to conduct her teacher education classes without succumbing to fatigue, breathing problems and spasms.
Specialists had tested her for a medical dictionary's worth of maladies. The spinal tap for Lou Gehrig's disease came back negative, as did the scan for multiple sclerosis. She saw her gynecologist for a cervical cancer test, a pulmonary specialist for a lung cancer screening, neurologists for all types of central nervous system disorders.
Negative, negative, negative.
One doctor even suggested antidepressants, thinking O'Kane was suffering from psychological problems. O'Kane, however, knew the problem was in her central nervous system, not "all in my head."
Still, just before this latest hospital discharge, the neurologist at the hospital told O'Kane's relatives that her condition would only worsen, and that a wheelchair was advisable.
"They told me I was going to be disabled," O'Kane recalls. "They said it would get progressively worse."
O'Kane had other ideas. During the hospital stay, she had read a story in The (Sacramento, Calif.) Bee newspaper about women climbing Half Dome, that 2,000-foot-high granite monolith in Yosemite, and she vowed to do it herself within a year.
A year later, she and her sister, Denise Wilbur DeTrano, had reached the goal, arms raised atop the granite slab. Just for good measure, the pair ascended Half Dome again this summer.
But O'Kane says it took more than dedication and grit to get her body back close to pre-illness shape.
Rather, she had to put aside her skepticism and commit fully to a controversial Lyme disease treatment plan that she had hesitated to enter because she technically had never been diagnosed.
It involved long-term antibiotic treatment -- open-ended, depending on her response to it -- through an IV line implanted in her left arm. This goes against standard treatment recommended by three medical organizations: the Infectious Disease Society of America, the Centers for Disease Control and Prevention, and the American Academy of Neurology. In a 2007 study published in the journal Neurology, researchers found that for patients with neuroborreliosis (Lyme disease that affects the nervous system), the treatment was effective only during a 14- to 28-day window. Long-term use of antibiotics has been linked to side effects such as blood clots, bloodstream infections and diarrhea.
Yet many Lyme patients (and those, like O'Kane, who exhibited symptoms but were not officially diagnosed) report that a six- to eight-month regimen of antibiotics helped them. And San Francisco physician Raphael Stricker, who has treated 1,800 Lyme disease patients, says he's seen patients cured by long-term antibiotic use.
"For patients with persistent symptoms based on persistent infection, unless they're treated long-term with antibiotics, they aren't going to get better," says Stricker, who did not treat O'Kane. "There is a lot of evidence from animal and human studies that there is persistence in infection (with Lyme), and the only way to get rid of it is long-term antibiotics."
O'Kane knew that prolonged use of antibiotics could be harmful, but she also knew that it was effective.
She underwent six months of treatment from January to July 2007. While taking the drug, she still had hand and facial tremors and had yet to gain back weight, but the severity was greatly diminished, and O'Kane could go about teaching and participating in triathlons.
What gnawed at her, though, was the fact that she'd never been diagnosed with Lyme. All those negative tests couldn't be wrong, could they?
That summer, she says, "I decided to take myself off it and detox. I wanted to try this on my own. Everyone told me, no, no, no. But I said, 'This is it.' "
About two weeks off the medication, she called her sister.
"She said that her feet were turning in -- foot drop like people with cerebral palsy have," DeTrano recalls. "Fifteen minutes later, she calls me and says, 'I can't walk.' I had to go and carry her into the ER."
After that prolonged hospital stay, the one in which neurologists said she might be permanently disabled, O'Kane was eager to go back on antibiotics. She recalls being in the Lyme specialist's office, and her feet were spastically moving so much "it was like I was tap-dancing on the floor."
Even with just the initial dose of antibiotics coursing through her system, O'Kane said she felt better. She tossed aside the walker and never used it again. Not long thereafter, she was running, swimming and biking.
She regained her strength and stamina, if not all the weight she lost. Still, through rehab with a personal trainer that includes weight training, O'Kane has 12 pounds of muscle mass, according to her latest hydrostatic weight test.
Ironically, after feeling better, O'Kane finally tested positive for Lyme in January 2008.
"She's a classic case," Stricker says. "The commercial testing for Lyme is, in a word, terrible. They miss more than half the cases. Compare that to the sensitivity of AIDS testing, which is 99.5 percent [accurate]. The tendency is for doctors to say, 'I guess you don't have Lyme disease. It must be something else.' "
O'Kane just seems happy to have finally cleared the major health hurdle. Now back to running seven-minute miles and churning on the bike, O'Kane believes exercise has hastened her recovery. But she admits that she still has problems, episodic tremors mostly.
"It's like somebody who suffers a stroke and recovers, but only to a certain point," she says.
Posted by sixgoofykids (Member # 11141) on :
You can also read more at my blog. Posted by daisyrlb (Member # 15686) on :
SHORT VERSION
OCTOBER 2003: Hiking at national park with family. Later, found tick (no big deal, pulled it off) BIG MISTAKE!
Text book Lyme symptoms. "Flu", aches, pains, sick in bed, exhausted, couldn't go to work. Got "better". Returned to work.
TWO WEEKS LATER: Developed large bulls-eye rash. Freaked out. Never saw anything like that in my life. My husband went online and found that exact rash--Lyme Disease! Neither of us had ever heard of Lyme Disease.
SAW DOCTOR in our small town (who I would have never gone to normally) but I was so freaked. Dr. said "No Lyme Disease in OKLA but, just in case, put me on ten days of Doxy."
ENDED UP IN ER five days after starting Doxy became "deathly" ill. Body in extreme pain. Terrible headache. Bulls-eye rash almost gone; Lab tests normal.
Told by ER doctor to follow up with a doctor to be tested for MS and/or Lupus (I did not follow up).
Didn't know it then, but that was a HERX that landed me in ER.
CHRISTMAS 2003 felt "better". I have a high threshold for pain, usually could go to work. However, when exhausted, could not get out of bed. Stayed home.
APRIL-SEPTEMBER 2004: "Fear" set in. Still could go to work, if not exhausted.
OCTOBER-NOVEMBER 2004: Brain fog. Losing my mind. Missed more work. More days in bed.
DECEMBER 2004: Going crazy. Milk to washing machine. Laundry to fridge. Etc. Driving and couldn't find cruise control on car we'd had for SIX years--THAT WAS IT!
When I arrived home my husband looked up Lyme Disease Symptoms. THERE I WAS! Had most of the symptoms. Scheduled appt. with Dr. C.
FEBRUARY 2005: (1 year and 4 months since tick bite) Finally my appt. with Dr. C in MO.
Followed faithfully one Abx after another per protocol. If herxed too bad, reduced. Built back up. When Abx no longer helping (no herxing) moved on to next Abx.
APRIL 2006 Went off Abx. Symptoms gone, except from time to time tired and my body weak--no more hiking, jogging.
Accepted that my life would not be the life I had before Lyme.
"REMISSION" APRIL 2006-MARCH 2008 Two years
APRIL-JULY 2008 Ignored Lyme signs. Tired. Brain fog, Forgetful, etc.
Finally set up appt with Dr. W In TX (closer to Oklahoma).
AUGUST 2008 - MARCH 2009 Seven months on Abx. Protocol different. High Abx doses, just hang in there, but if can't, then cut back. Hung in there as best as I could--one Abx after another.
Received encouraging PM from TF (BIG THANK YOU) regarding exercising per Dr. B's protocol. After beginning Abx this time, I started rubber band muscle strength exercises--30 SECONDS! No, I did not feel like it--but again and again I would read that PM. TF shared, "I have the same life I had before Lyme. I don't have an energy problem. I take a brisk 2-mile walk with some jogging (30 minutes) daily for my exercise program, plus I lift weights...Now, I can do what I want."
I started muscle strengthening slowly. Now I can do 45 minutes of muscle strengthening.
Dr. B says, "If you don't exercise you will not get better." WOW!
APRIL 2009: 5 1/2 years after tick bite, and one relapse later, I have my life back.
Since starting muscle strengthening exercises, I have been able to add walking, some jogging and cycling. Feeling better keeps me motivated to continue. One day I'd like to run in a Marathon (even if it's "just" five miles).
One other thing I'd like to share--REST/SLEEP. It is so important to rest our body. We don't have to let "Lyme" put us to bed, we can choose to lay down so our body can heal. When I'm tired, I rest. I enjoy it and don't feel guilty.
I haven't posted much in the past. I have read posts and have been encouraged. It is time--PAST TIME--for me to give back.
Lyme is not the end. There is hope. Do not give up.
SEPTEMBER 19, 2009 Attitude is so important (as I shared on a post today).
I do not know the future, but this I am sure of--I am not a Lyme Victim. I am a Lyme Survivor!
[ 04-17-2010, 07:09 PM: Message edited by: daisyrlb ]
Posted by TheCrimeOfLyme (Member # 4019) on :
I figured I would update my post that at one time or another I had on here.
- I first began getting sick in 2001, but it wasn't with anything I even remotely thought was lyme. It started in May, I got the flu. In June,
I lost my hearing due to a severe ear infection. In July, I got laryngitis, etc. It seemed like every month from May- September of 2001, I was getting sick.
And every month, I would get an antibiotic, take it and be better for another 3 to 4 weeks.
In September of 2001 though, is when lyme dropped the bomb on me. I was sitting at work when I got a sudden intense vertigo and completely lost my sight. My forehead started hurting me in the most intense way.
My then fiance came and got me and took me to the ER. They thought I had a "thunderclap" headache and was checking me for stroke or a blood clot, etc.
The Ct. scan was fine, but I wasn't. Though I could see, I was still having vertigo and my head was beyond killing me. I went home where I began running a very high fever.
From there on out, I had countless Er trips, tons of visits to my PCP and other specialists and tons of diagnoses- all of which were wrong.
by the time I was finally diagnosed it was mid 2002 and I was experiencing temp paralysis episodes, and a HOST of other severe neuro symptoms from head pressure to spurting nose bleeds, to constant 24/7 migraines that were insanely severe to constant 24.7 vertigo. I used to feel like I was walking on bubbles. Everything hurt. I had in total well over 75 symptoms.
The way I got diagnosed was a girlfriend of mine from college called me and said "I think you have lyme disease". I recalled that everytime I searched out my symptoms ( sometimes by holding onto my desk so I wouldnt fall over),
that it would keep bringing up lyme. I called my local lyme support group and they helped me contact a doctor.
I was blood and PCR positive and urine positive for lyme. Within just two short weeks of amoxy at 3 to 4 mg A DAY, my severe vertigo and migraines were gone and never returned. ( albeit I still do suffer a severe migraine from time to time).
I was 26 years old.
I am now 33. I have done TONS of treatments and tons of antibiotics and a wealth of alternative treatments from muscle testing to the rife machine to saunas, etc. I believe everything together is what helped me.
I still DO have symptoms ( only three) that require me to take antibiotics from time to time. But for the most part, I am living a pretty full and normal life again and have been for quite some time.
I decided to buckle back down and get rid of what is left. It was discovered two years ago the reason I wasnt fully better was because I didn't have the babesia or bartonella they suspected, but rather the southern strain of erlichia that no one even thought to test me for. I am having a hard time getting rid of it ( still positive), but I am still trying.
Posted by ladycakes (Member # 12619) on :
I ran 10 miles last week.
10 miles.
This time last year, I'd been on antibiotics for just about a year. I was sleeping around 16 hours a day, and had such bad pain in my legs I could hardly walk. I thought I'd never feel normal, or healthy, ever again.
But last week, I ran 10 miles.
Posted by richedie (Member # 14689) on :
Success Stories,
For those of you who got well got well can you go more into pain. Did any of you have terrible arm or leg pain that seemed to last for ever and get worse?
How about exercise? Mostly weights? Any cardio? Walking? I was feeling better last winter with treatment and was lifting weights and lifting heavy as I used to body build.
I was feeling good, went snowboarding...life was looking good. Then the rug came out from under me. They found after 5 month I did not get Babs out of me. She feels after 5 months it supressed it enough to give me quite a few months of reliefe and also was in the middle of Lyme and Bart treatment....but still had a positive Babs test.
I used to lift weights now a push up is hellish...pain in shoulders, elbows,etc My shoulder feels so unstable it feels like it could fall out.
A year later I am back on Babs treatment going on three months and still no better. Pain is horrible and is getting worse. I want to die. Anyone go through something similar?
Finally, how about details on your diet? I eat very little meat since cooked meat is essentially a carsinogen and that scares me and my digestion is not as good when I eat meat. I know some here ate nothing but meat and veggies while other ate almost vegetarian but mostly whole intact grains, whole foods, etc and no simple carbs or refined foods. That is kind of my diet.
Just looking for details on these issues to hopefully give me some hope from those who have gone before me. Thanks.
Posted by MariaA (Member # 9128) on :
I have treated Lyme with antibiotics and Buhner herbs, and had gone into a fairly sustained remission, and later had a reinfection (I'm pretty sure). It seems to be babesia and things are much more difficult this time around.
After a year+ of fighting the babesia, it seems to be gone.
Unlike the first time I treated "only" Lyme, which was a relatively easy experience, my theme this year seemed to be "this is really hard", "I wish I could afford tests to guide what I'm doing", "I can't afford anything" and "I'll do anything to get medication" and "throw the kitchen sink at it". My doctor had other ideas on how to deal with it but was willing to defer to my research. We did a lot of trial and error. I learned a lot about ordering medication overseas. I tried to get plant researcher friends in Africa to look for cryptolepsis for me (no luck on that). I seem to have a stomach of iron and a liver of iron, and tolerated this heavy drug use protocol. I am now somewhat better, though I still have Lyme symptoms that I think are unrelated to the babesia.
To 'afford' this stuff, I got medication from a couple of other patients on the internet, I bought generic Indian and Barbados-made medication from overseas pharmacies, and I didn't take some things (like Malarone instead of Mepron) that I would have preferred because I couldn't afford it and couldn't get it for free. I used many drugs simultaneously.
the progression went like this: May 2007: tick bite with some kind of obvious re-infection (I already had Lyme) 2 weeks of immediate amoxycillin/probenecid, symptoms went away 'mostly' I put myself on a couple of months of doxycycline relapsed about a month and a half after the bite got sicker and sicker and noticed that I had anorexia all of a sudden, along with night sweats and other issues got air hunger from hell about 2 1/2 months after the bite got on about 2 months of Biaxin and Buhner herbs didn't get any better started Mepron + Biaxin, kept up to that for about 8 months (I didn't take proper doses since I know I didn't have 6 months of Mepron bottles) started cryptolepsis and kept that up for about 8 months added alinia about 7 months in, didn't see a drastic effect added artemesinin, pulsed when I remembered to take breaks did about 3 3-week courses of alinia with breaks in between did Chinese herbal medicine from an herbalist in Chinatown (ie I have no idea what's in it, though he told me that some of the herbs were useful for malaria) did some acupuncture at various times when I could afford it air hunger finally started to subside 14 months after the bite (the other symptoms, sweats, dizziness, headaches, and anorexia, had subsided much earlier) Ran out of Mepron about 8 months into babesia treatment, have continued on Biaxin + Alinia + artemesinin + cryptolepsis for a month, followed by Rifampin + Bactrim + other rotated antibiotics and courses of Alinia and/or artemesinin. I've been on Bactrim continuously since I ran out of Mepron, it's one of the antibiotics that may be effective on both babesia and bartonella, which I suspect I may have. Will continue to take Alinia, alternating it with Flagyl, under the theory that it might treat cyst form of Lyme like Flagyl may, but also with the idea that I may still need to keep some babesia under control Been getting intensive acupuncture for immune regulation, with the acupuncturist somewhat targeting air hunger issues even though they were mostly gone Air hunger has been gone completely in the last 6 weeks, and was only occasionally coming up in the couple of months before then.
notes: I was on low dose naltrexone at first (but can't afford it, at only $54/month!). I think it made me have more of a herx response to all the treatment. I do think that it seemed to prevent my having major candida overgrowth issues, thank God. I'm going to try to find cheaper sources of it again.
also- I'm quite sure I had babesia but never got a test. I just can't afford to spend $220. Whatever it is that I had, it's responded to antimalarials and antiprotozoal drugs. I definitely have Lyme, and might have bartonella as well.
I got a lot of my meds from overseas, though various patients just gave me bottles of leftover Mepron, as the Mepron isn't available in generic anywhere yet (for overseas pharmacies, I usually look at pharmacychecker.com and go from there).
Alinia is very expensive in the US but is very cheap in India- $70/month (I ordered from this place, with a prescription: http://www.onlinepharmaciescanada.com/opc/name-search.aspx?drugname=alinia ). While Alinia has not been properly studied for babesia, it seemed to me like it was what finally got my air hunger to go away and I think it's a possible alternative for people who can't afford Mepron.
It's a subtle drug for me- I herx, but more in a weird, 'emotionally flat' sort of way than an obviously physical way like with Lyme drugs.
Biaxin caused me major depression and suicidal thoughts once or twice. I had known about this before, had warned my roommates and boyfriend about it, and it still snuck up on me even though I was watching for it. I was able to stop the drug, re-start a week later, and eventually the psychological problem stopped happening. I am NOT prone to depression normally so I'm just amazed at how much this can 'sneak up on you'.
People say that Mepron causes depression and suicidal thoughts, but I'm quite sure that for me it was Biaxin specifically. Azithromycin does not do this to me. I couldn't afford the zith so I kept trying the Biaxin. I have a LOT of confidence in my own mental health. If this happens to you on babesia treatment and you are prone to suicidal thoughts or depression, PLEASE do not play around with re-starting these drugs without telling your doctor AND having people around you who can check up on you. I've heard horror stories about people having uncontrollable suicidal thoughts while on babesia treatment. Suicide seems to be the most common way that Lyme patients die of their disease. I'm lucky that I was able to tolerate my medication after the second attempt at re-starting it, without the depression coming back. Some people may not be able to do so. Depression is also a major symptom of this disease. Don't take it lightly.
Biaxin probably caused me vicious insomnia. I can't believe how horrible this was. After trying lots of things that didn't help, I started using very low doses of Klonpin- 1/4 of the smallest tablet it comes in. It still didn't always help all the time, until I stopped Biaxin and started Rifampin/Bactrim/Flagyl etc
This past spring, cryptolepsis was unavailable from the supplier for a while. This was very unfortunate as I think it really helps me a LOT. I was taking fairly large doses (teaspoon three times a day, I've heard of larger doses still online). from talking to Woodland Essence, the supplier of the tincture, I don't think they're going to have this problem again.
Last time I saw the LLMD, a couple of months ago, I had just had some residual air hunger reappear, not very strongly. It seems like it would re-appear whenever I was herxing from Flagyl or other Lyme drugs. He wanted me to consider IV clindamycin, because he thinks that I shouldn't have had babesia symptoms for this long, and thinks that if it still re-appears under stress, it may be good to try IV protocol. He's been trying to get me on IM bicillin or IV drugs for ages, because he believes I won't improve on orals. I can't afford it and am taking a gamble on this gigantic chemotherapy cocktail of up to 4 antibiotics at once. I think I've gotten the remaining air hunger under control since then, and am off all babesia meds except bactrim. We'll see what happens this winter- I still have a lot of Lyme symptoms, and who knows what happens next time I switch meds or stress myself.
I'm aware that some babesia symptoms are also symptoms of Lyme or bartonella.
Posted by Brussels (Member # 13480) on :
Maria and everybody. Wonderful posts, thank you for posting@
Tomorrow, we'll be entering month 8 of full remission. No lyme treatment whatsoever. Not even herbs, nor homeopathy, nor photons.
My daughter and I, after multiple reinfections and relapses, are not treating lyme for 8 months! I can barely believe that!! Time flies!
Our last battles are described in the long thread in Medical, called 'PE1 and the Bionic therapy', for those interested. We stopped posting updates now as there's nothing new to add.
We're now treating heavy metals with the KPU protocol, but there are no killing agents there, only minerals and vitamins.
I am feeling very well for the moment. I have never been so long without lyme treatment since I started treatment in 2005. I'll post again if I reach one year lyme treatment free.
Good luck to you all!
Posted by Walnut (Member # 6585) on :
My success story
Years ago, I promised myself that if I ever got better, I would share my success story with others.
I did get better and it has been one year since I went off medications, and I have not relapsed this time. Three years ago, I was so sick that I could not drive a car, read a book or watch TV. I suffered from brain fog and I could not follow a normal conversation or speak in complete sentences -- I would forget what I was saying mid-sentence. Debilitating muscle weakness made it a struggle just to get out of bed.
I am about 80 percent recovered, and am feeling hugely better. I am able to do more things, and hope to return to work soon. I still have symptoms, such as inflammation, physical fatigue, muscle twitching, and cognitive problems, which slow me down. But I am feeling a thousand times better, and am very grateful for it.
For those who do not know or remember me, my story is that I was diagnosed with neurological Lyme disease in 2003 following a tick bite in Montana. The infectious doctor I had consulted prescribed 3 weeks IV rocephin. I was feeling better by the end of the three weeks, but relapsed in less than 6 weeks. I was told I suffered from post Lyme disease syndrome, even though I had all the same symptoms as before.
I found a LLMD, and nine months after my Montana tick bite, I was finally diagnosed with babesiosis (the test for B. duncani came back 1:1285). Also, it became clear that my Lyme infection dated back years before my Montana tick encounter. I was treated with many rounds of mepron, but would relapse as soon as treatment was scaled back or stopped.
What finally worked for me was aggressive treatment of my babesiosis, and getting my food sensitivities under control. The successful babesia treatment consisted of rotating lariam, malarone and flagyl (in combination with an antibiotic). I would take lariam for 3 months, then malarone for 3 months, and then flagyl for 5 months, and then start over again.
Another huge problem for me is food sensitivities. Over time, I discovered that foods that had been fermented, aged, pickled, or smoked made me sick. What these foods have in common is that they have a high level of tyramine. Tyramine is a natural substance formed from the breakdown of protein as food ages. Examples of foods high in tyramine are aged cheeses, yogurt, beer, wine, vinegar, canned meats, lox, sauerkraut, pickles, ripe avocadoes, tofu, and soy sauce. By cutting out these foods, I have been able to reduce my inflammation significantly, though not completely.
When I was the sickest, I started to write a book about my own experiences as a patient with Lyme disease. In the beginning I could only write a sentence of two, but as I started feeling better, the pages started to fill. My book is coming out in February, and its title is "Sick and Tired: How the U.S. Health Care System Fails Its Patients."
Posted by hikerunner (Member # 23842) on :
Thursday 12/31/09: Good Morning! I used to post to my diary that: ``it is not a good morning and I may never say good morning again''. This became a common statement on the first lines of writing in my diary for years.
Today is New Years Eve 2010!...and I feel as if it is the start of my new life! So it truly is a Good Morning! I have been through Hell and Back!
I am finally finishing up my book that I said I would always write someday.
I wanted to write my book back when I never fathomed in my wildest dreams that it would take 11 months for me to finally be diagnosed with Lyme or this Lyme-Like illness. 11 months to finally get one course of antibiotics! All because my first Lyme test ELISA was negative and then my second test (Western Blot) was CDC negative - which pretty much nailed my coffin. No matter how much the CDC can write on their web site that lab tests alone should not be used solely to determine the diagnosis of lyme - that it should be a clinical diagnosis - it is happening - because doctors are too busy and depend on those lab tests to be accurate.
I wanted to write my book back when I posted in my diary about how I just couldn't believe that such a medical travesty could happen. That the faulty IDSA guidelines, which the insurance companies quickly picked up on, could dictate treatment or better yet no treatment for thousands of people who are ill. And why - because they don't want to over use antibiotics? Then stop feeding them to the food supply!
I definitely wanted to write my book after months of searching for my own diagnosis, constantly researching on line after going to over 12 doctors, never giving up only to have a doctor on a med forum say things like : ``There are some people that believe it is psychiatric in nature''. I really wanted to write my book then. Blame the victim...right! As below indicates: ______________________________________________ CCF-M.D.-MJM 03/19/2006 C4 Hikerunner, ...We do see people like yourself with a diagnosis like chronic lyme disease, chronic myocarditis with normal ESR and normal cardiac enzymes -- we do not know what is causing these symptoms There are some people that believe it is psychiatric in nature. We see a lot of well grounded people that I can tell are really hurting and I am left with no explanation... ________________________________________
This after months of severe night sweats so bad I had to change my sheets at least twice during the night, fast heart rates of over 130 just standing, heart palps at night so bad that if I laid on my side I could hear my heart pound in my ears, muscle aches so bad that it felt like I had a knife stabbing in my back, unexplained bruising,shortness of breath just walking up a few steps,short sharp intakes of air out of nowhere, exercise intolerance, dizziness, brain fog, insomnia and extreme fatique.
A former long distance runner, who just one year before was setting records in her age group at races. Yet, because there were no abnormal labs and all heart tests came back normal except for sinus tachycardia and insignificant T wave changes that they could not explain ...it was all in my head. The lab tests were normal because my body had stopped fighting! The bacteria and/or parasite had taken over!
I wanted to write my book back when I felt all alone and so very ill. Back when I had stopped going to doctors because I would get statements like the one by the Med Forum Doctor. How could I explain to anyone at that time what it felt like to be ill like I was. Where does one start when they are trying to explain to other people what their ``undiagnosed illness'' had been like for months upon months. How a perfectly healthy woman had become a shell of her former self. Actually, becoming a totally different person that she no longer recognized when she looked at herself in the mirror in the morning. A woman who set records for her age group at road races just a month before she became ill. It all happened so fast...so that she still remembers that other person. No, it was not gradual, so that the memory has a harder time remembering what it was like to be well once. No, I remember exactly what it felt to feel ``great''. In fact, my health was my signature. And that is the unfairness of it all in my mind. That I still remembered that other person and I missed her.
How do you try to explain to other people how it feels like every morning to wake up knowing your day will be exactly the same as the day before and the day before that and the day before that! Like the movie ``Groundhog Day''. In the beginning of your ``undiagnosed illness'' just like the main character of the movie you keep thinking that you will have a new day when you wake up. That the day is new and every day you can start over. Then after awhile you would just except even that you will feel a little better when you wake up. Like having the flu, you come to accept that you feel like ``crap'' but yet you know eventually it will go away and you will wake up again to that feeling of a new day.
Only....... to finally come to the acceptance at some point over the days and months that drag on that you will wake up with the same body devastating illness just like all the other days before that. A chronic condition, an undiagnosed illness. Over 12 doctors and no diagnosis. How can you explain that to someone else?
So I wanted to write about my experiences but in April 2006 when ``I'' finally figured out what I had, I was just glad I knew what I had; then months of herxing so bad from having to wait for antibiotics so long, I could barely get out of bed; then replaced by the fear that many never get over Chronic Lyme; then months of antibiotics and illness caused by the antibiotics themselves; then not wanting to be on antibiotics for years only for it to come back again; so then using herbs and using myself as my own guinea pig because I wanted to live; then always waiting for the other shoe to drop thinking it would come back. 8 months of consistent antibiotics, months and months of herbs.
I lay in bed last night Decemer 30th 2009 - under the flannel sheets and just encompassed myself with the feelings of warm and well with no sweats, no fast heart rates and just relished in the thought I could sleep again! No longer will I take for granted the things I lost like the ability to sleep, walking up a flight of stairs without breathing heavy, my brain...the brain truly is a beautiful thing to lose and until you've lost it to brain fog from a disease and were lucky enough to get back again there is no purer joy, and again to be able to experience such health through the literal thrill of a run on a country gravel road with the sounds of the stones crunching under my feet as they hit the ground.
I am back! Despite the nay Sayers such as people who because they can't seem to get well believe no one can; despite some doctors that blame the victim; despite our current state of a terrible medical system with the insurance and the pharmaceutical companies running the show.
NOW 4 1/2 years since becoming ill and 3 years off consistent antibiotics (January 2007) I am ready to tell my story because I know you CAN get better from lyme or this lyme like illness. I did!
Posted by Meg (Member # 22) on :
lymemommy LymeNet Contributor Member # 12495
posted 18 January, 2010 09:42 AM -------------------------------------------------------------------------------- There used to be a spot for success stories, but
it appears to be gone, so I figured I'd start a
new one with my son's story.
About 3 years ago, my son started falling asleep
at the lunch table in preschool. He was 4 years
old, about to turn 5. I figured maybe he need to
get to bed earlier, or that he was having trouble
adjusting to the time change. I didn't know that
this was a symptom of a lyme, in fact I knew
almost nothing about lyme at all. A few months
passed, then on 4th of July weekend, my son
started running a fever of about 105. I took him
to the doctor and the ER, was told that some kind
of virus was going around. The fever lasted for 9
days, at about the 5th day he got a strange pink
rash spot on his chest. He was again taken to
the doctor, who didn't know what it was, but was
thinking along the line of juvelile rhemetoid
arthritis (JRA). She ordered bloodwork for
several different things, including a lyme wb.
Over the next few days,more pink splotches
appeared all over his body, until he had over 20
of them, on his chest, back, genitals, arms,
legs and face. Then the spots started to clear in
the center, and became the classic bullseye. I
called the doctor again, who felt strongly that
this was NOT lyme. Then following day, the WB
test results came in, and sure enough.... The doc
called, gave me the results, and said she was
going to call in an Rx for abx, that he would
take them for 3 weeks and be fine. She said there
was no need to bring him back in.
And that is how our lyme saga began. 3 weeks of
ABX were not enough, he could barely get up. We
were able to locate an LLMD, who recommended that
a second abx be added, to augment the
effectiveness of the first. He had his first
herx, which was horrible, but thankfully only
lasted one night. His symptoms over the next six
months included headaches, migrating jiont pains,
legs "too tired to walk", mood swings, physically
and verbally aggressive behaviors, light and
sound sensitivity, loss of sensation of pending
bowel movements, leading to total bowel
incontinence, and a loss of previously attained
reading skills. (I'm sure there were other
symptoms, but these are the ones that jump to
mind.)
After one full year of treatment, my son still
tested IgM positive for lyme. Most of his
symptoms had subsided, but he had persistant
night sweats. An EEG completed around this time
showed that he was having temporal lobe seizures.
He had completed kindergarten, but had struggled
to regain skills that he had at the age of 4. One
the plus side, he had regained sensation of
pending bm's, but he was resitant to using the
toilet due to all of the difficulties he had had.
The second year of treatment was a slow but
steady progression. His EEG's continued to show
seizure activity. The night sweats decreased, and
finally stopped by the end of the second year.
At this point, he started to titrate off of
medications, until finally he was medication
free. After 2 1/2 years, he was medication free.
His most recent EEG was "almost normal" and he
has no symptoms of lyme. He is now reading
chapter books, and is keeping up with his
classmates both physically and cognitively.
There is no guarantee that he will not relapse,
but for now, we will enjoy his good health, and
make the most of each day.
Take care all, I hope that his story gives hope to others.
kp
Addendum: Thank you all for your responses! It is a great relief to see my son finally off of abx and doing well, and although I will always worry that much more about every ache, pain, cough or sore throat, I beleive that we must revel in this moment of success.
For those that asked, his abx included: ceftin, zithromax, suprax, mepron and planquenil,plus of course probiotics. He was very resistant to any type of powdery stuff that had to be added to something like yogurt, so naturopathic tx wasn't an option (the screaming tantrums to get any such think into him just wasn't worth it, and seemed counterproductive).
No, he did not at any point take seizure meds. He had absense seizures, not grand mals, and his neurologist did not feel that meds were appropriate. He had EEGs every 6 months, and they consistantly showed improvement, with the most recent being almost normal.
I remember what it was like when my child was at his sickest, and I know how important it is to hear that there is hope, that some do indeed get better, even those that have clearly progressed to the neurological stage.
Posted by daisyrlb (Member # 15686) on :
Lymemommy/kp, thanks again for sharing.
I believe the success story of your son is bringing great hope to many people.
What a great attitude you have. Your little guy is blessed to have a mommy like you.
Isn't it amazing how after going through something like that (Lyme Disease) a person, a family can actually experience life more abundantly than another who may even be in perfect health yet is just drudging their way through life?
Living in the moment is a very good thing--actually great thing!
My prayers are with you for his continued health and for your continued peace.
Rhonda
Posted by daisyrlb (Member # 15686) on :
Moderators, thanks for putting "Success Stories" in a place that is easily spotted. I was reading through them again last night. WOW! Posted by daisyrlb (Member # 15686) on :
hikerunner Thanks for writing your post.
There truly is a right time for everything, including writing. You have a gift for writing and I look forward to reading your book.
May this be your best year ever!
Posted by Meg (Member # 22) on :
I would like to thank all of you for your concern and support.
This is my long version for those who are able to read it or have friends or loved ones to read it for them. For a long time I could not see to do anything. Thank God my husband found this site for me.
As you might know there are no short answers to 1this truly wicked disease.
I was one of the lucky ones! I wish all could be this lucky and fortunate. I am so sorry you are sick and pray for your recovery.
My symptoms started all of a sudden 9-25-03 when I awoke. They were so severe that this was a definate red light flashing.
My head, only on the left side, hurt so bad I could barely see. It felt like large spikes being driven into my head (about eight).
I could not sleep for more than 10 minutes at a time (for five months).
Within four months: 1. The left side of my head was numb except for excruciating constant pain inside.
2.A strip (one inch wide by five inches long) of my hair fell out on top of my head.
3. My vision was so blurry,double, triple, things that were on the ground appeared to be in the air, things were farther over than I reached, I could not see to do anything. I could not go into sunlight without covering my left eye.
4.I lost fourty lbs. My taste sense was messed up and I could not eat any salt (too salty),no pepper (too hot), No sugar(too sweet). I also couldn't stand to smell anything. It made me vomit(sorry), I did this daily even though I could not eat.
5.My left sinus stopped working, I could not sneeze or blow any mucus out. My tear duct or gland stopped working, I could not cry it hurt too bad when I tried. I could no longer whistle.
6.The only thing I could make myself do was attend all Dr. appointments my family could get for me. I had twelve apps. with MDs, two neurologists, a sinus specialist,and went to at least six different establishments, including two emergency facilities. I had been given several antibiotics since this acted like an infection, A MRI on my brain (which was negative and made me feel better about tumors), and very few pain pills which did not help the pain or anything else.
7. Each time that I was prescribed an antibiotic I got worse. I did not know that the antibiotics were killing germs which were turning into toxins and killing me. There were no Drs. who knew to tell me this either. This was good information for my LLMD, that by itself was an almost positive for Master's desease or (borreliosis) for me.
8.Sinus specialist had enough sense to make me an appointment for a MRI when he concluded it was not sinus related.
9.I was told after my second visit to a local emergency facility that "sometimes our brains tell our head to hurt". I also had contacted Bell's Palsey and could not open my left eye very wide,(I did not know what was wrong), they said as long as I could take my fingers and hold my eye open that it was open,I knew that the pain and symptoms were real no matter what anybody said.
10.When I went to Neurologist for MS and other related diseases, I was normal. I had plenty of strength in my arms and legs and my balance was fine. Dr. said he did not know what could be wrong with me, this was the first Dr. who told me that.
11.While my husband was second guessing the neurologist oppinion surfing the web, discussed my symptoms with her. She had some of the same symptoms and sent him to LymeNetFlash, she must have been God sent. This was in Jan.2004. I felt so much better to know that someone else knew what I was going through was real, not an over-active brain. It also helped knowing that it was a disease and when you go to the right Dr. a LLMD there is help and hope. This did me more good than all the pain pills that I had taken.
12. On my way to recovery; I immediatly made an appointment for a Western Blot test listing ALL BANDS. I then made an appointment with an LLMD located five hundred miles away.
13. My test results were totally negative according to the Dr. and lab in my town. I had already been warned about this and knew to take it with me to the LLMD.
14.My appointment was in Feb.2004. As soon as my Dr. saw a positive band he knew that I was 98% positive for Master's disease or (Borreliosis). When I told him how sick I was after taking antibiotics for forty days, he knew for sure. He explained to me about the toxins produced by the decaying germs, they are too big to pass through the blood streem without decaying first.
15.My Dr. gave me a wealth of information about this horrific disease, about fifty pages front and back. He instructed me to have my loved ones read it to me over and over until I could comprehend some of it. There is so much going on that he could not possibly cover it.
16. He told me to begin to remove toxins from my body with; 1. activated charcoal tablets and extra virgin oil. 2. apple cider vinegar and unpasturized, unheated honey. 3.Vitamin C 4.Detox Max Plus (this stuff is great)
17. He told me to take good antibiodies to replace the lost ones in my intestine, and to eat yogurt and buttermilk.
18. He told me to read all the literature and educate myself.
He told me to keep taking one antibiotic until I stopped herxing from it, and stopped continuing to feel better.
He said that if I was not in New England when I got the tick bite, then what I have would be called Master's disease or Borreliosis.
Ticks in the USA have a number of infectious diseases. They can have as few as one and as many as there diseases, some of these are Borreliosis, Rocky Mt. spotted Fever,Babesiosis,ehrlichiosis, Bartonella(cat scratch disease),and tularemia(rabbit fever). For this reason the USA disease is different from New England Lyme. Studies done by researchers with microscopes have seen a difference in the rash of the two.
Here is a list of antibiotics that I have taken; 1.Nystatin- intestinal yeast controll 2.Doxycycline- targets most tick-born diseases 3.Clindamycin and Quinine-targets Babesiosis, rotated every ten days with Amoxacillin ten days- to target bacteria hiding in cell walls L-form 4.Flagyl- the only antibiotic which targets the cyst form of Borrelia burgorferi (a Lyme bacteria) and protozoa which is not a bacteria, virus, fungus or yeast. 5.After five weeks of Flagyl,Biaxin or another antibiotic has to be added to kill the spirochete (or spiral form) of bacteria which the Flagyl has chased out of the cyst. 6.Rifampin- targets Bartonella (cat scratch disease)
2005 prescribed antibiotics; 1.Erythromycin 2.sulfa with Flagyl- targets both bacteria and protozoa 3.PenVeeK 4 Tetracycline- more water-soluable, gets into tissue better. 5 sulfacetamide-antibiotic eye drop
2006 prescribed antibiotics; 1.Malarone- targets malaria and other similar diseases. 2.Minocycline- targets the brain area helping with cognitive problems, and any neurological problems originating in the brain.
3.Zithromax with Plaquenil- Zithromax targets the cell walls. Borrelia burgdorferi (a lyme bacteria), have the ability to get rid of their cell wall, this antibiotic works on the inside of the bacteria to kill them. Plaquenil is a quinine derivative but milder. It is one of the few antibiotics that is able to work in an acid enviroment. White blood cells attack to kill germs, the germs get attacked by Lysosomes inside the blood cells which have an acid enviroment.
I hope this helps someone.
May God Bless You, Sherry
Posted by Meg (Member # 22) on :
FinallyWell Junior Member Member # 22956 posted 24 October, 2009 ------------------------------------------------- In five years, I've never posted a message to LymeNet, but I have taken advice from many members. I promised myself if I ever got completely better I'd post a notice so others would know that Lyme, Babesia, and Bartonella sufferers (yes, I had all three infectiions) can be healed.
At one point, I was unable to walk and almost blind in one eye. Now, I've been without symptoms for 14 months and I'm off of all antibiotics. A couple of years ago, I thought I would be on antibiotics for the rest of my life.
I found my great doctor through ILADS, which I learned about through this site.
If you are infected, don't give up hope. It's a long journey back to health, but I feel better now at 47 then I did at 30. I also learned how to take care of myself along the way. I never thought much about herbal supplements before becoming ill, but now I swear by them.
Good luck to you all!
P.S. Excercise when you are able and stay away from sugar. ---------------------------------------------- posted 26 October, 2009 06:19 PM ------------------------------------------------- Several members asked me to post the treatment regimen that led to my recovery. Here it is:
June 2004
Two weeks of constant headaches followed by bulls eye rash on arm.
MD prescribed three weeks of Doxycycline. I made certain to eat yogurt every day while on antibiotics. I learned that lesson years ago. Note: Lactose intolerant sufferers can usually digest yogurt since the lactose has been fermented.
Wasn't worried since my husband had Lyme two years previous and fully recovered.
July 2004
Three days after stopping Doxy I woke up with numbness from below my knees down to my toes. Went back to MD who was clueless.
Over the next two weeks, I developed many symptoms of late stage Lyme disease, including:
My MD told me it was too soon for me to be that sick. I finally told my MD I wasn't leaving her office until she made an appointment for me to see a neurologist.
Neurologist put me on IV Rocephin for one month, which took care of all my symptoms.
June 2005
Woke up with completely blurred vision and pain in one eye. Sent to two different ophthamologists. One thought I might still have Lyme. Neither could help me. I finally bandaged my eye for four days until the pain stopped completely. Vision not only returned, but went from 20/22 to 20/15. I wore sunglasses whenever outside since any light continued to cause stabbing pain where the optic nerve met my eyeball.
October/November 2005
Numbness below the knees began again while on vacation. I had fatigue and slurred speech by the time I got to the MD. He told me I had chronic fatigue syndrome. I told him I had Lyme and I wasn't leaving without Doxy. He gave it to me but told me it wouldn't help. It helped my eye but left me unable to walk for days (I guess it was a Herx but I didn't know at the time). Once I started walking again, it was excruciatingly painful. Each day, by the time I finished the slow walk to my office, I had tears streaming down my face. That lasted for about a month
I found Lyme Net and started looking for success stories. I found none. My mom told me an MD friend of hers told her I'd never get better BUT a doctor could give me drugs to keep me comfortable and antidepressants to keep my spirits up. I believed her for about a day. FYI: Don't listen to naysayers!
March 2006
Previous MD kept me on Doxy until I could find a new MD to treat me. Found current LLMD through ILAD and Lyme Net. He told me I was probably co-infected. By that time, I had no respect for MDs. I asked him to keep my on Doxy for several more months and I'd be fine. My symptoms were gone except for my sensitivity to light. My vision returned to my normal 20/22.
April/May 2006
Attended Lyme Conference in Virginia. Downloaded Dr. Burrascano's protocol and followed what I could - - mainly exercising, reducing sugar and no alcoholic beverages at all.
December 2006
LLMD finally talked me into being tested for Babesia and it came back positive. He put me on Mepron and Zithromax, along with Doxy. Herxing felt like I had been thrown from a train but only lasted a day and occurred every two weeks or so for several months.
March 2007
Developed eye twitching again and extremeties began falling asleep at night. Extremely stiff neck (could not move my head from side to side for a week). CD-57 at 3. Herxing had stopped. LLMD put me on Clindamyacin along with Doxy and Zithromax and I began herxing again, but not as bad as before.
June 2007
I had reached a plateau and I was feeling hopeless. My LLMD told me I might not get better. My husband bought me Healing Lyme by Stephen Buhner.
Began seeing a nutritionist/herbalist who put me on several herbs, including artemesinin and powdered mushrooms.
July 2007
Mild herxing while on herbal supplements.
April 2008
CD-57 at 18. LLMD noticed microvascularization on my face. I also had a stiff neck and still had problems with numbness in extremities in cold and while sleeping. LLMD sent me for Bartonella test and it came back positive with a photograph of many infected RBCs. He said it was the worst case of Bartonella he'd ever seen. Prescribed Rifampin, Bactrim and Zithromax.
June 2008
Finally symptom-free! LLMD dropped Bactrim.
September 2009
CD-57 at 45.
February 2009
Began herbal supplement called Lyme-Aid I found online which follows Stephen Buhner's protocol for Lyme. Only took one pill/day since I felt fine (just a low CD-57 count).
March 2009
CD-57 the same. LLMD prescribed Plaquenil, which I refused to take due to my previous eye problems.
June 2009
Rifampin and Zithromax dosage cut in half. Still feel fine.
September 2009
CD-57 at 70. Vitamin D levels normal. No sign of infections. Antibiotics stopped.
October 2009
My LLMD won't say I'm cured (it's too soon), but he does say I'm resolved. My own body is able to fight the infections now and I have been symptom-free for over a year. That's good enough for me.
Everyone harbors bacteria, which kept in check, aren't a problem.
For now, I'll keep taking my vitamins, avoid sugar and alcohol, exercise a few times each week and take the herbal supplement I get online.
Posted by Meg (Member # 22) on :
Dr. Virginia T. Sherr Case Histories and Successes
Topic: SUCCESS STORY in progress!! (Here's hope!!) SarahL Member Member # 11452 posted 15 October, 2007 ------------------------------------------------- As I was posting last week in the Medical thread about my neuropathy driving me insane, I thought, you know, for all the things that are still vexing me, there are a lot of sx I either don't have anymore or sx that have gotten so much better I barely notice them.
Then I saw the thread, "How come there are only 45 success stories," which had the potential to depress so many people. Personally, I *understand* a thread like that, but I can't allow myself to think negatively or nothing positive will come to me (or at least, that's what I believe). Of course, I still slip into that negative mindset sometimes - everyone does, and it's easy to do when you're suffering!
So I'm starting THIS thread, and I hope it's someday pinned up at the top like the success story thread, since there are hundreds of us IN PROGRESS but not cured yet.
It might give hope and help encourage positive thinking, which my doc and I agree is half the battle (the mind-body connection is HUGE, especially with chronic illness and chronic pain). Of course as I type this, I'm knocking on my wooden desk.
I am a success story IN PROGRESS!!
My improved or eliminated symptoms are:
Overall pain is much less Insomnia is gone I have several good hours each day now I can grocery shop for a week's food! I never have a day when I can't walk now My cane is leaning in a corner, dust-covered! Walking at the mall/flea market/wal-mart isn't torture on my legs anymore My fingers aren't locking up anymore (I can type!) Most days I can think clearly Most days I can see clearly I can lift my 5 year old son now I can play with my son on the floor and not worry that I won't be able to get up I can travel without as much pain I can drive without fear that my mind or body will give out on me I'm swelling less in fingers, ankles and face My Bell's Palsy is less frequent and goes away more quickly
I have been given my life back, albeit in a limited capacity. I'm thankful for each and every tiny bit of healing. I have a long way to go to optimal health, but I can function now, can drive now, can play with my son and *ENJOY* life now. Pain is not overwhelming my life anymore.
Now, if that's not the makings of a success story, I don't know what is! I'm getting there, slowly but surely, and I know there are many, many others out there just like me - on their way to putting Lyme in the PAST!
You guys are a huge part of my road to recovery, even though I mostly lurk. I've learned so much that has helped me, and I hope this post helps someone who is looking for hope or who is facing the daunting idea of years of treatment for Lyme. You *can* get better, you *can* improve, you *can* do this!!
Gentle hugs- Sarah
Posted by Meg (Member # 22) on :
Author Topic: Silver Lining / Success for one Visual Afterimage Man LymeNet Contributor Member # 10435 posted 06 January, 2007 ------------------------------------------------- I broke down and informed one of my co-workers that I have been dx with Lyme. He informed me of another person who was just about 100 feet down the hall from me who also had been dx.
This poor fellow had been getting worse and worse over the course of 6 years. At the time of dx he had been stricken to a cain and was forced to give up many of his hobbies.
This man, was determined not to listen to the ducks who give him dx like fibro, CFS and possible MS. He kept his search going and going until he found the right doctor who tested for LYME.
I met him last week and he's walking like a normal human being again. He has thrown away that stupid cain for good. He admits that he's not 100%.. yet! But he feels pretty good now that he's able to walk without assistance. As a matter of fact, he walks totally normal.
It's amazing to me that the majority of the medical community still does not recognise Lyme as a common chronic illness. He got the same story that I did. Lyme isn't around here. It's Fibro and CFS. Give me a break.
Today he's continuing with his oral abx. He admints that he might spend the rest of his life on abx, but if that means the difference between being in a wheel chair or walking totally unhindered, then he'll take the pills!
Hang in there ya'll. You will get better.
-------------------- 26 months of treatment. And counting.......
Posted by daisyrlb (Member # 15686) on :
Meg, I too have my success story posted somewhere above yours. Smile.
It was great reading your success story. Your info is really great with all the details. I know it is, and will continue to be, an encouragement to those who are battling Lyme.
There is success at the end of the tunnel and we ARE all Lyme Survivors!
Posted by Tincup (Member # 5829) on :
This inspired me, so I was thinking you would like to know too.
While speaking to a LLMD... a fairly new one who has been following ILADS for the past 4-5 years or so....
They told me that 10 of their patients had gone off disability after many years of having to be on it.. and had gone back to work and are doing fine.
That is totally amazing!
Posted by daisyrlb (Member # 15686) on :
WOW, Tincup that truly is amazing! Thanks for sharing.
What great news to wake up to! Posted by Lymester (Member # 5848) on :
Dear Angela and Lou,
Every year since the spring of 2006 as I began recovery from lyme, my intent has been to thank you. I think of you every Thanksgiving in particular. With each and every year I successfully get through, I thank you. I thank Lori. I thank the many that shared their experiences, that shared their knowledge, their history... For without lymenet, I would be alone. I'd had lyme since 1996 and by 2004 I was bit again, and spiraled into such physical and neurological weakness.
I found a doctor that I could afford, that worked with me on a plan of action. It was not until I was in the clear that I was able to reach out to 2 other sufferers by phone. I was able to increase who I could let back into my life, as I was only able to care for my daughter and myself. I am active now. I have friends, old and new that are like my family. I met many people here, that have made all the difference in the struggle to be well. I pray thanks to you and those here every day.
Yours truly,
Lisa CT
Posted by DJP (Member # 5893) on :
I found this board in 2004 when my daughter who was 2 1/2 got bit and was infected with Lyme. I found out 14 months later I was infected and my 14 mos old was infected probably from being breastfed all that time...
Thanks to the great people on this board, my girls saw the best ped for Lyme, Dr. J. My oldest is now eight and has been symptom free for 4+ year. The youngest is six was treated for 3 mos and seems to be fine.
It's been almost a five year battle for me to get to this point where I can say I feel I have finally beat this disease.
My last treatment was 1 year ago and it was 6 weeks of IV followed by a couple of mos of Doxy and Rifampin for Bartonella.
Although, I haven't been able to post here, I do what I can to support the Lyme community. I've done lots of Lyme awareness activities, worked with my local board of health to do a mailing, gone to Boston to support legislation/rallies, gone to NY and CT for rallies, legislation and in support of Dr. J.
I still contribute to Dr. J's defense funds because I know other kids will need him. I tell everybody all the time about Lyme...I have packets in my car and hand them out...I've helped people, who've helped people..
So, thank you to those of you who pointed me in the right direction and helped me get through this (Tincup, Lymetoo, Maddog, Gigi, kam, kgg,alknwf, bettyg, treepatrol, Melanie Reber,siebertneurolyme(I wouldn't have been able to read any of the post if it weren't for you and bettyg breaking them up)..so many others).
You've each helped me and in turn I helped others. I see lots of new names which is sad, but good that they have found this site.
I also just want those of you trying to get through this horrible ordeal that there is a light at the end of the tunnel and things will get better. I just read that Patience for people with Lyme is not a virtue...it is a survival tool and that is so true.
Best wishes, Deb
Posted by daisyrlb (Member # 15686) on :
Deb,
Thanks for sharing! You are an amazing woman, mom, Lyme Survivor, and inspiration.
God bless you and your family! Rhonda
Posted by paulieinct (Member # 17514) on :
quote:Originally posted by paulieinct: Hello all. I took a vacation from the board for a few months, but I am back to give encouragement to all who despair that they will never get better.
After almost 2 years of antibiotic treatment, I am finally turning a corner for the better. My fatigue is GONE.
Cardiac issues (arrhythmia, tachycardia) GONE. Near syncope and seizure-like episodes GONE. Chronic constipation GONE.
Severe itching episodes GONE. Cramping and twitching of muscles, incl. facial tic, are GONE. Cognitive symptoms mostly GONE. Burning neuropathy in my feet, not gone completely, but MUCH IMPROVED. Stiffness of hands and clenching of fingers into a fist not gone completely, but MUCH IMPROVED.
My strength has returned and I am going to the gym 3 times a week for vigorous workouts (strength training, not cardio).
Vision has IMPROVED, but not 100 % yet.
Balance has IMPROVED, but not 100% yet.
In summary, I feel better and stronger than I have felt in YEARS.
I am not "cured" yet, and will likely continue treatment until I'm 100%, but my Lyme doc is very pleased with my progress, and so am I.
To everyone on this board, do not despair. There is HOPE.
A regular exercise program is IMPORTANT. My Lyme doc kept after me to get my fat butt off the recliner. I was too tired early in treatment to do much. When I started feeling a little stronger, that's when I started a rigorous workout program.
Planet Fitness gym only costs $10/mo, and they are open TWENTY-FOUR HOURS during the week. PERFECT for Lymies with insomnia.
My protocol during the last several months: penicillin, biaxin, fluconazole, plaquenil, LO-DOSE NALTREXONE (will bring your libido back), ENZYMES like Wobenzym-N and lumbrokinase to dissolve biofilm,
supplements like NAC, Co-Q10, resveratrol, DHEA, weekly B-12 injections, lots and lots of probiotics.
To get to sleep, I take generic benadrl and .5mg of clonazepam. I take the LDN as soon as I start feeling drowsy.
I never went on IV abx, too scared of the gallbladder thing. Just orals.
KEEP THE FAITH. This can be beaten. I am getting there, and wanted all to know. I know how much despair there is among Lymies. =Paulie
Posted by daisyrlb (Member # 15686) on :
paulieinct,
I couldn't wait to see who added to this thread when I saw the number had changed.
Thank you so much for posting.
What a great report--"feel better and stronger than you've felt in years" that's worthy of a hallelooooooo!!!!
See your sense of humor is intact, "Planet Fitness...for Lymies with insomnia." LOL
Praying and believing with your for 100% recovery!!
Blessings multiplied to you, Rhonda
Posted by D Bergy (Member # 9984) on :
I did not know for sure if I was ever going to be able to post in this spot, but here I am.
I have been treating my wife for over five years, learning, and refining my treatment method, and upgrading equipment, as it became available.
Rife type frequency treatments is all I have been using for the last couple of years. I did not think I could reach deep into the body for the bacteria any other way. I had to use a more powerful device in the end, but that made a huge difference.
I also had to eliminate Bartonella, that I did not even know existed until recently. That was not too hard, but it did cause some nerve damage on the way out. I may have killed that a little too fast.
In all likelihood, I am going to treat her a couple of more times but not for quite a while. I am going to consider it cured until I have some indication that it is not.
Her strange symptoms since the last treatment have subsided for the most part. Dizziness is gone, weakness is gone. She no longer has any swelling in the ankles. That is another first since infection. She still has numbness in a few places that comes and goes. I am going to say it might be nerve damage from die off, but it may be that she has a partially blocked artery, and hopefully we can get that diagnosed definitively in the near future.
Unless something else crops up that looks like Lyme symptoms, I am calling this one done, and at least for the time being, successful.
Now the long wait and watching starts.
Time will tell the true story, but I am pretty optimistic that even if some symptoms do come back, I can eliminate it.
Thanks to all here for the support, information, and help when needed. I learned a lot here, and I hope everyone else can post on this thread in the future.
I will be around, if anyone needs some help with frequency treatments. It is the only method I have any expertise in.
Thanks again. You are a great bunch of people, and Lyme can't take that away from you.
Dan
[ 07-11-2010, 12:12 PM: Message edited by: D Bergy ]
Posted by Michelle M (Member # 7200) on :
I'd love to add to this thread of success stories.
I had excruciating headaches for a couple of years which finally got so bad I thought I must have a brain tumor. Went from GP to neurologist to hormone doc; finally got an MRI showing numerous frontal lobe and other lesions. MRI report stated they were compatible with MS or possibly lyme. I thought "Hmm, wonder if that could be from that tick I had a couple of years ago that bit me and that rash I got there that I ignored?"
This meant nothing to my neurologist, who declared there was no lyme in California and in fact, there were no ticks here, for that matter. This was pretty stunning information. "Hogwash," I thought.
I discovered LymeNet. Got referred to an LLMD just 75 miles from me. Had every sign of neuro lyme, though it fortunately never manifested in muscle aches or "body" type of lyme. Just mainly brain pain and fog. And incredible tiredness. I could hardly drive without falling asleep. I could not remember two sentences ago.
Tested CDC positive with IGeneX. Big relief as neuro pushing me for MS diagnosis. Did a month of IV before insurance shut me down. Then on to orals. First six months saw little improvement. Close to a year later I gave in and tested for babesia -- choosing JUST the cheap test done by Sonoma County due to limited finances. Luckily, it was positive for babesia WA-1 (now b. duncani). Treated it twice, several months each time, with Mepron/Zith/artemisinin. So not fun. So much increased pain! But at the end, so much better.
My combined treatment was a little under two years. At the end I've still some memory deficits and my executive functioning skills are pretty much in the toilet. However, I've learned to work around them. The headaches I thought would never end did end.
I lost my high paying job and took a year off on disability. I reinvented myself as a wedding photographer.
Over the next couple years I had two additional tick bites. (See 2008 evil tick bite and 2009 evil tick bite - one more time. ). Both times I was able to immediately get back on antibiotics. Neither caused me the grief of the original (ignored) bite.
Today I do wedding photography plus paralegal work. I have to write things down to remember them long, but I no longer get lost trying to figure out how to get home. I don't walk around holding my head because of blinding headaches. I've been off antibiotics entirely for several years (except for a couple months for the bites above) and feel quite fit.
To those who feel it's never going to get better: It IS. Just keep putting one foot in front of another. Trust your LLMD.
Watch out for ticks, educate everyone you know, and keep up the fight. There is life after lyme!
Posted by sixgoofykids (Member # 11141) on :
For those of you reading this thread and wondering why there aren't more stories from more people here,
please know that the vast majority of people who actually come back and post their successes on the forum never actually put them in this thread, so they are lost to the archives, probably never to be found and read again.
I would say in my time as a member here (and before I signed up) I have seen at least 95% of those with success stories never put them in this thread.
So take heart, this is just a very very tiny sampling of that group that makes the effort to come back and let us know. Then consider that MOST people never even come back to post about their successes.
On that note, here is a thread from the Medical forum to add to this sticky. I don't know that the poster will be back to ask them to post it here, so I am pasting a link to it just in case, before I forget about it and it gets lost like the others:
After three years, and two bites (that I know of)I have been enjoying a period of recovery.
Still continuing daily abx, supps, and the regimen of nutrition but getting better.
I have been free of acute symptoms for a month. and steadily improving since August second bite.
Mentally, emotionally, and physically the acute daily recurring symptoms have subsided to where I believe I am getting myself and my life back.
that is so welcome but also a puzzle to a degree after this...
No I am not stopping treatment yet by any means but I am so grateful for this period of so many symptoms being absent.
What remains is some of the longer term nerve impact in lower body and I do notice an underlying bartonella provoked anxiety that will probably subside with another round of homeopathics.
It did last time. also have an occasional spark in leg. dizzy if too tired.
but i went through the latest cycle without symptoms recurring or showing up as a die off.
Ball and chain crushing fatigue -gone. Daily so sick feeling - gone. Headaches,dizziness, rashes, herpes outbreaks- gone. extreme anxiety and depression-gone racing heart - gone hurty bumps on head -gone central nervous system impact is improved a lot and more..
The story: Nov 5 2007 hospitalized with sudden onset indescribable pain in spine followed by waistdown paralysis.
Three days IV steroids. Yes, steroids. Released after five days. Physical therpy to walk, climb stairs, drive again.
gradual improved in bwel and bladder control and walking...but not gone. Definitely lasting effects.
One year later a friend paid for me to see an electra dermal practitioner.
she found the lyme. energy therapy, homeopathics, detox, parasite cleanse, .and many targeted supplements. effectual prayer and megabucks later...I improved some more.
Massage therapy helped reconnect upper and lower body nerve pathways. Color therapy (art) helped too. Everything has helped.
Well except the steroids the neurologist put me on...that has most likely complicated the nerve recovery. but some do not survive it at all with lyme.
also helped by integrative doc who was helpful with antiinflammatory approaches, despite being lyme illiterate...no...she was in chonic lyme active denial.
but electra dermal practioner had reached all she could do--- after a point it stalled and worsened in a different way. she wasn't recognizing that either.
I did not know I had undiagnosed bartonella.
also in a way perhaps we do not realize, I believe pre existing herpes infections (and probably plenty else) can complicate the picture.
so the third year was the (another?) year from h^*l. A nosedive mentally and emotionally and stuck.
I did not know it was bartonella assaulting my brain and making me want to die.
Practioner not getting it.
A state of true desperation for many months and then prayer from friends that pulled me out of the bottom of the pit to about halfway up...I at least didn't want to die though I was still beyond miserable.
Then the second bite.Immediate acute intense symptoms. Erythrem migrans rash. Emergency room.
Clinical diagnosis. (thank God for an informed ER doc who did a clinical dx ...and who knew I would be grateful for the dang rash?!)
but that catapulted me here and into a new treatment protocol with a lyme literate ND with antibiotics.
And a rapid new learning curve. even though my sister had had it and I thought I had a somewhat of a clue. Well I did but so much more.
Such a uniquely individual journey to what works. But with liver support, adreanl support, herbal antivirals, abx, and the all so important nutritional regimen...
Not to mention forgiveness on more than one occasion. Not an easy matter when you life has been at stake ...more than once.
but still ultimately essential.
here I am.
Grateful. working to embrace today as good days that have lasted a month
and maybe just maybe a whole lot more of these good days for a long time.
who knows what the future holds? I could never have guessed back when that lyme & co were in my future.
Never mind the severe impact of losing vision, dreams, health, mental status, functionality...
In short life as I knew it went bye bye. The financial strain has been extraordinary. In the midst I moved. How I pulled that off is still pretty miraculous.
but I also had timely gifts from friends and family...an unexpected tax refund...a personal loan and paring to the bone.
Even dropping health insurance to pay my medical costs..they weren't. It was survival mode.
Not something I recommend at all but I did ...to keep a roof over my head or the meds...
but here I am. challenges are still ahead.
but it is so much better.
I thank God for all to whom he brought me. For every willingness of anyone to share their experience, knowledge, feelings, strength and hope.
I am surviving and beginning to thrive.
from just 6 months on here I know many are heroically fighting worse and some have it better...
but here we are...and in case you are reading this and wondering... there is great hope.
Never never actually give up. Even when you have no fight or effort left. Then let surrender take you through.
Recovery takes all you got...but all you got is not enough many times.
so do not be afraid to be vulnerable and admit need. I pray for your recovery, in the name of Christ my Lord..
that you recognize the encouraging hallmarks of recovery as it comes and that you are sustained in hope and courage during the process.
that the resources you need come to you and yours during this season of life.
all the best to you,
deerose
Posted by djjp1972 (Member # 30167) on :
Hi everyone !!! My name is Dave . Im new from MDjunction. Betty G referred me to here. I was infected w/ Lyme in May 2001. I just started treatment June 24th 2009. Im seeing LLMD. I was in such bad shape. Im 38 yrs old. I wasa body builder at tip top shape at 29 . My life went downhill not knowing what was wrong for almost 10 years. Im rebounding from treatment like SUPERMAN!! Im around 98% recovered. I still have tiny symptoms ranging from sore feet (very mild) to mild dizziness (spaciness) and mild heart flutter. Everything else is gone from night sweats to swollen glands..brain fog gone .Energy level high. I can focus and have great clarity.
I am almost 100%. I have a huge question. I would like to go in a HBOT chamber . I think the way Im healing so good that the HB cham. might be the nai in the coffin. Or should I not do HBO cham. since Im healing so good...Could this make things worse?? Thank you, Dave [Smile] P.S. So much to type I have a list of supplements and diet Im doing.
Posted by 4Seasons (Member # 14601) on :
2010 - A Year of Miracles:
I thought that ya'll could use a happy story and I'm glad to be able to have one to tell.
2010 was an amazing year of recovery for my teenage daughter, just amazing.
She was congenitally infected and became very ill at age 12. For 2+ years she suffered horribly in all the horrible ways Lyme sufferers do - seizures, mental illness, nausea, horrible pain, light and sound sensitivity, tremors, joint pain. She didn't take a step for two years and we had to put a feeding tube into her stomach to keep her alive. Many hospitalizations. Our LLMD said she was one of the sickest patients he had ever had (and he sees a lot!)
The end of 2009 found us at our wits end. She spent five days in the hospital on Morphine after she bumped her leg. Our LLMD suggested a medically induced coma (Ketamine), which we tried in late December.
In January everything started to shift. Her pain levels came down. The year we had spent with the LLND started really paying off and she was able to tolerate IV abx, which helped dramatically (they had made her sicker before cuz she couldn't detox properly).
It was a combo of many things, but once the improvement started, it was dramatic. In February she was able to start spending time in a warm water pool with a physical therapist and by April she took her first steps again!
It was an amazing spring. Instead of staying in bed all the time she wanted to see the wildflowers every day. She was able to start eating more. Everything was improving so rapidly.
She spent several weeks on crutches before she had the strength to walk again, but by summer she was there. I was able to slowly wean her off of all the pain and psyche meds.
She had missed three years of school, but in the fall, at age 15 she started community college with a light load and did very well. She had her feeding tube and IV line removed in the fall.
Today she is doing so well! She is still in treatment, but says she is symptom free!!!
I knew we would move heaven and earth to get her well, but the speed of it all, once it finally started, was such a wonderful surprise. Now it is my turn to get well. I don't have to look far for my inspiration
Update March 2012 - happy to report that DD is still well! Off abx for over a year and off all supplements for about 8 months. I wish she would stay on a few, like probiotics, but she doesn't want to. There are lingering PTSD issues, and here WB IgM is still positive, but she is healthy now and living a full life. So, so grateful!!!
[ 03-04-2012, 03:31 AM: Message edited by: 4Seasons ]
Posted by ccarr (Member # 30997) on :
Loved reading the success stories!!! nothing more healing than hearing how other people have made it through.
Posted by stillwater (Member # 30312) on :
4Seasons,
What a wonderful success story. My best wishes for continued recovery for you and your dear daughter.
Posted by payne (Member # 26248) on :
Awesome reading folks, the wall will fall. keep em coming !! Wayne
Posted by supergirl (Member # 26936) on :
gives me hope to hear this last powerful success story...and helps me stay commited to my protocol...my new doc will def do IV abx if I need it! just a reminder that the IV can really do the trick for some
starting IM abx for the 1st time on Monday...hard to believe it will really help...but, I DO trust this new doc. Have to find the strength to completely get off sugar and gluten.
hope to all!
Posted by payne (Member # 26248) on :
Lord, lou needs more work.. send more recoveries.. bring Blessings to many and Praises to you, GOD Posted by Dancingwinde (Member # 25982) on :
I just saw this post after posting a post asking for success stories, LOL.....
I'm looking for people to email me their success stories with their permission to use it...here's the text of my original post:
Hi all,
I am currently working on a special "project"....details to be announced at a later date..........
I am in search of Success Stories. Please send me an email at [email protected] with yours. Please know that I will need your permission to use and publish this information, so if you don't want your real name used, just give me an alias, or just a first name.
If you know anyone with a success story, please give them my info and ask them to send it to me. I sincerely appreciate it.....
I'm very excited, and I can't wait to complete this. If all goes as planned, it is going to help many many people understand Lyme disease, and give those who are suffering from it hope and courage to get their lives back!
Any questions, send me a PM!
All the best,
Dancingwinde
Thanks in advance!
Posted by Kudzuslipper (Member # 31915) on :
this a great thread! congrats all on your success and thanks for letting us know things CAN get better.
Posted by Susie R (Member # 30780) on :
Thank you everybody for these inspiring stories. Much needed today...
Susie
Posted by ChristineMany (Member # 16818) on :
So I figured I would add to this...
Let's see...recap - Had this active at least 30 years...was bitten by the tick that set things in motion when I was 7 in KY...but was infested when I was 3 in NJ...
I went from vibrant and active - incredible athlete - to a pain ridden athlete that would play until she dropped...8th grade was the end of it...
Finally dx'd based on a borderline positive WB when I in 91 - and after 3 wks of IV Rocephin and zero improvement (surprise surprise), my step-fathers boss got us in with a husband/wife team in NJ...
He dx'd me with classic Lyme...and we went from there...
Spent more then 12+ years trying all sorts of abx, supplements and even naturals...
Had come close once to remission - 8 months of nearly no symptoms - except fatigue...Doc wanted me to go 10 months before coming off abx...I wasn't the most difficult case - but complex for sure...
Made it 8 months - then the bottom fell out...Then several months after that - because preggo with kiddo #1...what a MISERABLE pregnancy...I was HUGE...
Her placenta was tested and cleared - but I do believe I ended up transmitting anyway via breast milk...
When she was about 3, I started up with Whole Food Fruit and veggie supplements...and my life started to change...
I still required meds - 120mgs morphine every 12 hrs, Lorcet 10's (2-4 a day) for breakthru pain...
And then I got preggo again...Twins...but I had a Great pregnancy - I was eating better and lost fat - then gained only babies...
They nursed for nearly 2 years, and Lyme had knocked my endocrine system for a loop...severe depression and what not...almost lost my kids and my marriage...
Moved to CO in 2006 - went to a homeopathic doc that discovered how beaten my endocrine system was - and my adrenals were near dry...so I started some homeopathic stuff...
Within a month I was preggo with #4...but we were broke...fortunately, I found a family doc, who, altho not an LLMD - she was willing to learn and work with me...
It was a tough pregnancy - but I got through...didn't have the money to be super healthy...got HUGE again...and she outweighed her sisters by 1-2+ lbs...
Ended up moving up higher into the Rockies when she was 18 months old - moved to over 8000 ft - and I started feeling better...less heat, less humidity...the shade actually works here (unlike in NJ)...
Started at that point on my natural quest. I had done a few rounds with abx - including Rifampin - which made me herx like crazy - I'm not a big herxer...
But I started my natural quest...it was rough at first, because I had to finally address the Babs and Bart infections along with HHV6.
Started on Samento, Cumanda, Lauricidin, and Artimisinin...samento (cat's claw for that matter) works for about a month for me and that is it...
Went on Carnivora - which is pure venus fly trap juice...works wonders but is costly...there are cheaper types...But it kept me from catching anything the kids brought home...
Had to finally go 100% Gluten Free - my guts were fried...so we started making tons of dietary changes...lots of juicing and just healthier options...
2 years ago, I was able to walk onto a soccer field and play - for the 1st time in 23 years - I was able to play...was asst coaching for my kids...
Playing once a week with local women...it was tough - but nothing I could not handle...Then joined a gym - played basketball - swam...I was doing better...but was still Fatigued and hurting...was only on Lortab 7.5...but I still needed them...
Oh - had also been on Lyrica after my youngest was born...for the nerve pain...but after 3 years - I was getting worse...turns out it was the Lyrica that was the problem. Got on generic elavil and have been on 25mgs for the past year and a half - never needed to up it...
Anyway - got a job delivering newpapers...What fun - in the middle of spring snow storms...was listening to XM radio and heard Dr. John Gray (the infamous Men are from Mars/Women are from Venus fame)...
He was talking about health...and superfoods...and he talked a TON about Maca...a root that grows in the Andes mtns...and its ability to nourish the endocrine system...especially the adrenals...
Now I was taking an adrenal support product at the time - and it certainly helped...but when I started Maca, Goji and a Dr. Gray product...things really changed...
Within 2 months, I quite the paper and got a job as a house keeper - and was able to work 8-10 days straight, cook and clean and care for my kids and hubby...hang out - Live Normal...
Symptoms became less and less...
I had also in this time settled on new naturals...
Spiro - for the Lyme and Bart...Takuna for the HHV6, Olive Leaf Extract, Elderberry, Schizandra (great for cognitive function)...and a few other things...
Kept refining the diet - learning to do a lot of GF cooking, no refined sugars, no processed foods...and by the end of that summer (last year) I was able to say I was in remission...
I no longer have Fatigue or Fibro - which were among my worst...but everything had quieted...I have been able to do things that I have never before done...or struggled to do...and I can do them on my own...
In August we moved back to where we started out in CO...I do have permanent issues with IBS...and I do have perm nerve damage in a particular area of my spine - due to an accident - and of course its a nerve that will kick up the IBS...
Nothing can be too easy...
I have truly come to believe that if you start treatment, by preparing the body...treatment can be much easier...I have had so many friends do this, and by the time they got on abx natural or convention or both...they did so much better...
I also have come to believe that if you focus on the endocrine system - because it has SO much to do with healing, that the digestive system and everything else will come in line...
Sure it takes time...But to me - 2 years to make success vs 28 yrs of struggling...is just a drop in the bucket...
And it would have probably taken less time if I had learned about Maca earlier - it was my missing link...
Oh and a note about Maca - for those who don't know...and some of my friends used this to get their hubby's to OK the purchase...It will boost the sex drive...A TON of positive feedback in that area...
So, I suppose that sums it up...tried to make it as short and simple as I could...
Hang in there - you just need to find the path that works best for you...
Christine
Posted by DesperationIn (Member # 13121) on :
I wanted to post my lyme disease success story. When I was incredibly sick a few years ago, I recall how much I sought out these stories and wished there were more of them. Often, it was said on this board that people who get better do not return to post their success stories because they go back to living normal lives. I just wanted to return and post mine here to let you know that I am living a normal life and that there is hope and life after lyme. When I was very sick, I never in a million years believed that I would be here telling a success story of recovery. I wanted to post my story for Thanksgiving because I sure have a lot to be thankful for.
In January 2007, I was a second year law student at a school in Nashville, TN. In January or February I began to feel my health tanking with a combination of strange symptoms. I felt weak, the side of my head and later my body felt like they were in a constant vibration, I began losing a lot of weight (being too thin naturally)- the symptoms were getting progressively worse. I was very tired and had trouble thinking. I felt something very serious was wrong with my health. I had no idea what a tick even was and had no risk factors for lyme. I also suspect I was bitten on the back of my head since symptoms started there, but I did not remember a bite and needless to say nobody saw a suspicious rash.
Then, I went through the typical lyme diagnosis story. I went to over 15 doctors including those in infectious disease, hematology, oncology, and even a psychiatrist. Like many others, I was ridiculed, called a hypochondriac, sent to psychiatrists. One doctor did test me for lyme but an ELISA came back negative- but the fact that he ordered this test got me looking into lyme disease on my own. I scoured the internet for an illness that would fit my strange bouquet of symptoms, considering everything from cancer to exotic parasites.
I spent the summer in Chicago, trying to survive through working at my legal internship. I finished the term of my first internship but had to quit my second summer internship early due to the progressing mysterious illness. By the end of the summer, I was beginning to feel some strange joint pains and everything else was getting worse. At the end of that terrible summer, my now husband proposed to me- I was very fortunate that he stayed with me despite the fact that I was getting sicker and sicker without anyone knowing why.
Eventually, I read about the lyme controversy and testing issues and convinced a doctor to agree to send blood to Igenex for lyme and coinfection testing. When I saw the result, I finally realized I had lyme- not only lyme, but also all the coinfections including both forms of erlichia, babesia, rocky mountain spotted fever, and others I can't now recall (later energetic testing also found bartonella but this was not confirmed by the blood tests). All in all, I went undiagnosed for over six months. I take sole credit for diagnosing myself based on my internet research and the help of folks on this website who shed light on the huge political and medical controversy surrounding this disease.
I was happy we knew what the illness was, but by then my life was literally falling apart. I did not go back to Nashville for the school year and transferred to a law school close to home in Cleveland, OH, hoping to do a semester near my family where I could have some help. However, after going to school for three weeks, I realized I was too sick to continue. I took leave from law school for the year because I could not think or look at a book. I was so sick and tired that it was hard to walk around the block or do the basic tasks of daily life. My whole life, I prided myself on my intellectual ability and academic success and I could not even read anymore. I felt that I lost my entire identity and fell into a deep depression in addition to being just physically ill.
In September, I went to a lyme doctor in PA for treatment and started antibiotics. I got a PICC line and spent over five months getting daily infusions of IV Rocephin. One line got infected and I had to get a second line. To our dismay, the Rocephin did not really make me all that much better- it actually felt like I was getting worse. I continued doing antibiotic regimens, but they also were not doing wonders and I continued to feel very sick. However, I believe the antibiotics did stop lyme's progress and enabled me to very slowly get on my feet and begin exercising that spring.
When I was sick, my family tried everything to get me well. It did not help that I am somewhat of a pessimist and did not handle the challenges presented by lyme very well. During that year, when I had to quit school, I was so sick both physically and emotionally that I contemplated suicide. I felt that I was a burden on my entire family, that I could not recover or work again, and that I really had no future outside of being so sick all the time. Only the encouragement of my family, especially my mom's ``never give up attitude'' and care and kept me going in that very dark time.
We tried everything. In addition to antibiotics, we went exploring all kinds of alternative therapies. I went to an alternative doctor to get IV infusions based on energetic testing. My mom and I learned to muscle test and I took a huge bagful of various supplements each day, which we regulated based on muscle testing. I did all kinds of herbs, acupuncture, homeopathy, and massage for lymph drainage. At various points we purchased and used Dr. K's KMT 1000 machine the Beamray rife machine. We saw numerous alternative practitioners in addition to lyme doctors. Ohio is sadly a black hole for this disease as there are no conventional doctors I knew of then (or now) who recognize and treat this disease. There also are not many alternative practitioners we found in Ohio who have much experience with lyme. I suspect that most people suffering from chronic lyme in my state are misdiagnosed and treated for other diseases.
As summer rolled around, I still felt terrible and was not sure if I could ever return to Nashville to finish law school. However, my family and my fianc�e encouraged me to return to law school in Nashville. But I was still incredibly ill and could not take care of myself. My mother's employer was very generous and allowed her to work from Nashville so that she could stay with me and help me. I returned to Nashville, this time living with my mother, and eventually finished my final year of school.
Nashville, I found, had better resources for lyme treatment. We found an alternative chiropractor who had some experience with lyme, rife thrapy, and who practiced flower essences. We also found a wonderful conventional doctor who was in the process of learning about lyme disease treatment and who was even knowledgeable about the Patricia Kane protocol and to whom we went for IV glutathione infusions. I heard there were other practitioners who did hyperbaric oxygen therapy for lyme there too, but we never tried that. This was much more medical support than we had in Ohio. My ``lyme'' doctor at that time was in Connecticut and we had phone consultations with him. He was a whiz about antibiotics but did not do or know much about any alternative therapies. That year, I continued rigorous antibiotic treatment, trying different combinations. I took numerous antibiotics and meds during this ordeal, including bicillin injections, and the mepron yellow paint which literally broke the bank since I had no prescription coverage.
In May, I graduated law school and got married. A few months later I took the bar exam. Although I could think again enough to finish law school and study for and pass the bar, I still felt very sick. The antibiotics clearly helped but fell far short of any kind of cure. Also, when I tried to take breaks from antibiotics during that second year of treatment, I had to start them again very quickly because I would just slip and get worse. I lost hope that I would ever reach a point where I would go a day feeling energetic and normal and not having to think about this dreaded disease and I never thought I would be able to stop antibiotics for lyme.
After I took the bar, my mother suggested a radical step of going to Germany for treatment with the Bionic 880 photon therapy machine. She had read about the experiences of other lyme sufferers on this forum and on the internet and thought that it could help. In October my mom, dad amd I traveled to Germany to do the Bionic 880 treatment with Dr. W. In Germany, Dr. W's energetic testing showed lyme at the highest point on his testing machine- the needle of the machine seemed to strain the lyme detecting equipment. I treated with the Bionic 880 and did the IV infusions and ozone therapy he had in his office where they take out a good deal of blood, infuse it with the ozone, and then put it back into you. I admit, I was pretty skeptical about the treatment, but I was hopeful that it might help. At my last session with Dr. W in Germany, the lyme showed as non-existent on his testing equipment and he pronounced me lyme free.
But I did not feel so lyme free and when I returned to the states I still felt very sick. After Germany, however, I stopped taking all antibiotics (we stopped taking all medications and supplements a few weeks before going to Germany as Dr. W suggested). However, after returning, I gradually began to feel better and got that ``spark of life'' back that I thought I would never feel again. I felt more and more like my old self. And this time, I did not appear to get worse after stopping the antibiotics, so it seemed like the photon therapy did ``something.'' From that first visit to Germany in the fall of 2009, I stopped and stayed off all antibiotics for lyme.
In January, soon after returning from Germany, I learned that I was pregnant. However, about six weeks later I had a miscarriage. After that, I seemed to slide down in terms of lyme symptoms. I long thought that I would not be able to have a child because of the lyme ordeal. My symptoms then started to return and my family planned another trip to Germany for May. When we returned to Dr. W about half a year later, his energetic testing showed that lyme was active, but still nowhere near the level it was on the first visit, when it seemed to be off the charts on his energetic testing machine. This time, he used the Bionic 880 to treat with coinfection nosodes in order to address the erlichia, babesia, etc. Again, when we left, his energetic testing showed no lyme or coinfections.
This time, however, my family purchased a Bionic 880 machine to use at home if needed. We were fortunate to find one used in the states. When we returned home, I slowly felt my condition improve. When I felt like I was slipping or my symptoms were returning, I repeated the treatment on my Bionic 880 at home, using the lyme nosodes from Germany or those we got here from Deseret Biologicals. We would repeat the photon treatment when muscle testing and my symptoms indicated. First it was once a week, then every two weeks, then rarer and rarer. Since returning from the first visit to Germany in October of 2009 I have not returned to taking any antibiotics. Also, after the first visit to Germany, I started a full time legal job, which I handled just fine. Nine months later, I switched to a more demanding legal job and worked even longer big firm hours, often staying up until midnight to handle legal work. I never thought this would ever be possible given how sick I was previously.
After returning from the second trip to Germany in the spring of 2010, in the summer, I was diagnosed with thyroid disease. I am not sure if this was caused by the photon therapy, lyme, or both, but I felt that perhaps my thyroid issue was partly to blame for my prior miscarriage. I was not upset about the thyroid because it seemed like a cakewalk compared to the lyme, from which I seemed to be recovering. The thyroid issue was controlled with a pill a day and occasional monitoring by an endocrinologist.
In the beginning of this year, I again learned that I was pregnant and a few months ago I had a healthy baby girl. I did not take antibiotics during pregnancy because I was feeling okay and by then I had been off all antibiotics for two years. At birth, I had a cord blood sample sent to Igenex for lyme testing and it came back negative. Although I am very worried and plan to monitor her closely, my daughter seems to be doing fine. I am on maternity leave and look forward to going back to my job. I do not think about lyme every day, just once in awhile to remember what my family and I went through and to be thankful for what I have now. I am not sure if I am cured and I am not sure if I will ever feel just like I did before lyme, but I feel good. My symptoms are gone and I no longer think about lyme and it is no longer a part of my life. Of course, I am worried about lyme coming back, but I plan to use the photon machine if I feel any symptoms returning.
During my journey, I met others who have beaten this disease in different ways and using different therapies and who now lead normal lives. I feel very thankful to have had such great family support during my battle with lyme because they gave me the strength to go on and hoped in my place when I had no hope left inside of me. I know how much of a burden lyme can wreck on your life physically, emotionally, and financially. When I was very sick and not getting better in spite of very rigorous and costly treatment, I felt that I had nothing left to live for. All I have to say is that I learned how little qualification I have to work as a fortune teller because I was wrong in confidently predicting that I would be a casualty of this disease when, today, I sit here sharing my success story.
I wish all of you much health and a happy Thanksgiving holiday.
** edited names of Lyme doctors **
Posted by Keebler (Member # 12673) on :
- (Same fabulous post as above, with added white space breaks for easier reading) ------------------------------
My Lyme Disease Success Story
posted by DesperationIn
23 November, 2011
I wanted to post my lyme disease success story. When I was incredibly sick a few years ago, I recall how much I sought out these stories and wished there were more of them.
Often, it was said on this board that people who get better do not return to post their success stories because they go back to living normal lives.
I just wanted to return and post mine here to let you know that I am living a normal life and that there is hope and life after lyme. When I was very sick, I never in a million years believed that I would be here telling a success story of recovery.
I wanted to post my story for Thanksgiving because I sure have a lot to be thankful for.
In January 2007, I was a second year law student at a school in Nashville, TN.
In January or February I began to feel my health tanking with a combination of strange symptoms.
I felt weak, the side of my head and later my body felt like they were in a constant vibration, I began losing a lot of weight (being too thin naturally)- the symptoms were getting progressively worse. I was very tired and had trouble thinking.
I felt something very serious was wrong with my health. I had no idea what a tick even was and had no risk factors for lyme. I also suspect I was bitten on the back of my head since symptoms started there, but I did not remember a bite and needless to say nobody saw a suspicious rash.
Then, I went through the typical lyme diagnosis story. I went to over 15 doctors including those in infectious disease, hematology, oncology, and even a psychiatrist. Like many others, I was ridiculed, called a hypochondriac, sent to psychiatrists.
One doctor did test me for lyme but an ELISA came back negative- but the fact that he ordered this test got me looking into lyme disease on my own. I scoured the internet for an illness that would fit my strange bouquet of symptoms, considering everything from cancer to exotic parasites.
I spent the summer in Chicago, trying to survive through working at my legal internship. I finished the term of my first internship but had to quit my second summer internship early due to the progressing mysterious illness.
By the end of the summer, I was beginning to feel some strange joint pains and everything else was getting worse. At the end of that terrible summer, my now husband proposed to me- I was very fortunate that he stayed with me despite the fact that I was getting sicker and sicker without anyone knowing why.
Eventually, I read about the lyme controversy and testing issues and convinced a doctor to agree to send blood to Igenex for lyme and coinfection testing.
When I saw the result, I finally realized I had lyme- not only lyme, but also all the coinfections including both forms of erlichia, babesia, rocky mountain spotted fever, and others I can't now recall (later energetic testing also found bartonella but this was not confirmed by the blood tests).
All in all, I went undiagnosed for over six months. I take sole credit for diagnosing myself based on my internet research and the help of folks on this website who shed light on the huge political and medical controversy surrounding this disease.
I was happy we knew what the illness was, but by then my life was literally falling apart. I did not go back to Nashville for the school year and transferred to a law school close to home in Cleveland, OH, hoping to do a semester near my family where I could have some help.
However, after going to school for three weeks, I realized I was too sick to continue. I took leave from law school for the year because I could not think or look at a book. I was so sick and tired that it was hard to walk around the block or do the basic tasks of daily life.
My whole life, I prided myself on my intellectual ability and academic success and I could not even read anymore. I felt that I lost my entire identity and fell into a deep depression in addition to being just physically ill.
In September, I went to a lyme doctor in PA for treatment and started antibiotics. I got a PICC line and spent over five months getting daily infusions of IV Rocephin. One line got infected and I had to get a second line.
To our dismay, the Rocephin did not really make me all that much better- it actually felt like I was getting worse. I continued doing antibiotic regimens, but they also were not doing wonders and I continued to feel very sick.
However, I believe the antibiotics did stop lyme's progress and enabled me to very slowly get on my feet and begin exercising that spring.
When I was sick, my family tried everything to get me well. It did not help that I am somewhat of a pessimist and did not handle the challenges presented by lyme very well. During that year, when I had to quit school, I was so sick both physically and emotionally that I contemplated suicide.
I felt that I was a burden on my entire family, that I could not recover or work again, and that I really had no future outside of being so sick all the time. Only the encouragement of my family, especially my mom's ``never give up attitude'' and care and kept me going in that very dark time.
We tried everything. In addition to antibiotics, we went exploring all kinds of alternative therapies. I went to an alternative doctor to get IV infusions based on energetic testing.
My mom and I learned to muscle test and I took a huge bagful of various supplements each day, which we regulated based on muscle testing. I did all kinds of herbs, acupuncture, homeopathy, and massage for lymph drainage.
At various points we purchased and used Dr. K's KMT 1000 machine the Beamray rife machine. We saw numerous alternative practitioners in addition to lyme doctors.
Ohio is sadly a black hole for this disease as there are no conventional doctors I knew of then (or now) who recognize and treat this disease. There also are not many alternative practitioners we found in Ohio who have much experience with lyme.
I suspect that most people suffering from chronic lyme in my state are misdiagnosed and treated for other diseases.
As summer rolled around, I still felt terrible and was not sure if I could ever return to Nashville to finish law school. However, my family and my fianc�e encouraged me to return to law school in Nashville.
But I was still incredibly ill and could not take care of myself. My mother's employer was very generous and allowed her to work from Nashville so that she could stay with me and help me. I returned to Nashville, this time living with my mother, and eventually finished my final year of school.
Nashville, I found, had better resources for lyme treatment. We found an alternative chiropractor who had some experience with lyme, rife thrapy, and who practiced flower essences.
We also found a wonderful conventional doctor who was in the process of learning about lyme disease treatment and who was even knowledgeable about the Patricia Kane protocol and to whom we went for IV glutathione infusions.
I heard there were other practitioners who did hyperbaric oxygen therapy for lyme there too, but we never tried that. This was much more medical support than we had in Ohio.
My ``lyme'' doctor at that time was in Connecticut and we had phone consultations with him. He was a whiz about antibiotics but did not do or know much about any alternative therapies.
That year, I continued rigorous antibiotic treatment, trying different combinations. I took numerous antibiotics and meds during this ordeal, including bicillin injections, and the mepron yellow paint which literally broke the bank since I had no prescription coverage.
In May, I graduated law school and got married. A few months later I took the bar exam. Although I could think again enough to finish law school and study for and pass the bar, I still felt very sick.
The antibiotics clearly helped but fell far short of any kind of cure. Also, when I tried to take breaks from antibiotics during that second year of treatment, I had to start them again very quickly because I would just slip and get worse.
I lost hope that I would ever reach a point where I would go a day feeling energetic and normal and not having to think about this dreaded disease and I never thought I would be able to stop antibiotics for lyme.
After I took the bar, my mother suggested a radical step of going to Germany for treatment with the Bionic 880 photon therapy machine. She had read about the experiences of other lyme sufferers on this forum and on the internet and thought that it could help.
In October my mom, dad amd I traveled to Germany to do the Bionic 880 treatment with Dr. W. In Germany, Dr. W's energetic testing showed lyme at the highest point on his testing machine- the needle of the machine seemed to strain the lyme detecting equipment.
I treated with the Bionic 880 and did the IV infusions and ozone therapy he had in his office where they take out a good deal of blood, infuse it with the ozone, and then put it back into you.
I admit, I was pretty skeptical about the treatment, but I was hopeful that it might help. At my last session with Dr. W in Germany, the lyme showed as non-existent on his testing equipment and he pronounced me lyme free.
But I did not feel so lyme free and when I returned to the states I still felt very sick. After Germany, however, I stopped taking all antibiotics (we stopped taking all medications and supplements a few weeks before going to Germany as Dr. W suggested).
However, after returning, I gradually began to feel better and got that ``spark of life'' back that I thought I would never feel again. I felt more and more like my old self. And this time, I did not appear to get worse after stopping the antibiotics, so it seemed like the photon therapy did ``something.''
From that first visit to Germany in the fall of 2009, I stopped and stayed off all antibiotics for lyme.
In January, soon after returning from Germany, I learned that I was pregnant. However, about six weeks later I had a miscarriage. After that, I seemed to slide down in terms of lyme symptoms.
I long thought that I would not be able to have a child because of the lyme ordeal. My symptoms then started to return and my family planned another trip to Germany for May.
When we returned to Dr. W about half a year later, his energetic testing showed that lyme was active, but still nowhere near the level it was on the first visit, when it seemed to be off the charts on his energetic testing machine.
This time, he used the Bionic 880 to treat with coinfection nosodes in order to address the erlichia, babesia, etc. Again, when we left, his energetic testing showed no lyme or coinfections.
This time, however, my family purchased a Bionic 880 machine to use at home if needed. We were fortunate to find one used in the states. When we returned home, I slowly felt my condition improve.
When I felt like I was slipping or my symptoms were returning, I repeated the treatment on my Bionic 880 at home, using the lyme nosodes from Germany or those we got here from Deseret Biologicals.
We would repeat the photon treatment when muscle testing and my symptoms indicated.
First it was once a week, then every two weeks, then rarer and rarer. Since returning from the first visit to Germany in October of 2009 I have not returned to taking any antibiotics.
Also, after the first visit to Germany, I started a full time legal job, which I handled just fine. Nine months later, I switched to a more demanding legal job and worked even longer big firm hours, often staying up until midnight to handle legal work.
I never thought this would ever be possible given how sick I was previously.
After returning from the second trip to Germany in the spring of 2010, in the summer, I was diagnosed with thyroid disease. I am not sure if this was caused by the photon therapy, lyme, or both, but I felt that perhaps my thyroid issue was partly to blame for my prior miscarriage.
I was not upset about the thyroid because it seemed like a cakewalk compared to the lyme, from which I seemed to be recovering. The thyroid issue was controlled with a pill a day and occasional monitoring by an endocrinologist.
In the beginning of this year, I again learned that I was pregnant and a few months ago I had a healthy baby girl.
I did not take antibiotics during pregnancy because I was feeling okay and by then I had been off all antibiotics for two years. At birth, I had a cord blood sample sent to Igenex for lyme testing and it came back negative.
Although I am very worried and plan to monitor her closely, my daughter seems to be doing fine. I am on maternity leave and look forward to going back to my job. I do not think about lyme every day, just once in awhile to remember what my family and I went through and to be thankful for what I have now.
I am not sure if I am cured and I am not sure if I will ever feel just like I did before lyme, but I feel good. My symptoms are gone and I no longer think about lyme and it is no longer a part of my life. Of course, I am worried about lyme coming back, but I plan to use the photon machine if I feel any symptoms returning.
During my journey, I met others who have beaten this disease in different ways and using different therapies and who now lead normal lives.
I feel very thankful to have had such great family support during my battle with lyme because they gave me the strength to go on and hoped in my place when I had no hope left inside of me. I know how much of a burden lyme can wreck on your life physically, emotionally, and financially.
When I was very sick and not getting better in spite of very rigorous and costly treatment, I felt that I had nothing left to live for.
All I have to say is that I learned how little qualification I have to work as a fortune teller because I was wrong in confidently predicting that I would be a casualty of this disease when, today, I sit here sharing my success story.
I wish all of you much health and a happy Thanksgiving holiday.
(DesperationIn - Cleveland, OH)
----- Replies and discussion to this post are over at this original thread:
I haven't been around for a long long time. I am doing much better. After extensive reading/research I went the "Oil of Oregano" way. Started slow and built up to 4 drops daily with lots of water.
Haven't used the cane lately. Once in awhile I have little minor relapses, however, nothing like before. Gained back some weight, I was gettin skinny.
Use of cane is gone at this time. Back to walking, but only one mile walks, not 2-5 at a time.
Back in summer, Judge granted me disability based on Lyme disease and depression. This process took over two years to finalize. I felt blessed that he recognized how ill I was and took compassion.
I remember last summer (2010) how ill I was. Sometimes I get the little sypmtoms here and there, but I can function with energy and my life is not what it was!!!!
Blessings! Horsehelper
Posted by HorseHelper (Member # 30255) on :
Keebler, we live in the same location. Horsehelper Posted by HorseHelper (Member # 30255) on :
oooooops, sorry! It's Desperation, not Keebler, that lives in the same area as me.
Horsehelper
Posted by Susie R (Member # 30780) on :
I consider myself a success story. I don't know when I got infected, but I'd been ill for almost 5 years when I began treatment. My primary symptoms were crushing fatigue, pain, and brain fog. I couldn't exercise at all---just going to the market was exhausting.
I was on antibiotic therapy for almost six months and now I am treating with herbals (japanese knotwood, teasel, a general tonic, and burbur). I am able to exercise and the crushing fatigue is gone! I actually jogged a little bit yesterday, did some strength work in the gym and didn't feel like the roof fell in on me. I felt good.
Exercise tolerance is a BIG clue that I am better.
I am pretty scrupulous about an anti-inflammatory diet.
And I'm very grateful to the doctor who treated me.
Susie
Posted by jtma508 (Member # 34962) on :
Hi all. I wanted to update my story in the hopes that some out there can take solace in it. In the early Fall of 2007 I awoke to a seriously swollen left knee. I attributed it to rnovation work I was doing at the time, strapped it up and went back to work. Over the next several days other joints became painful (all on the left side), brain fog, fatigue, fever, nightsweats, cough, the whole gamut. Trained originally as a medical technologist I recognized what was going on and connected it to a bite/rash my wife had noticed one morning several weeks earlier on my backside --- no 'bulls-eye' but a 15-16cm diffuse rash with a clear bite.
I saw my primary doc and he drew blood for tests and turfed me to a rheumatologist for my knee. My knee was aspirated and I was given a shot of cortisone. I was also told I did NOT have Lyme (the tests came back negative) but had some kind of 'idiopathic arthritis'. Within a couple days my symptoms disappeared. Just in time for the holidays.
Several weeks later, in early January, my symptoms came roaring back with a vengeance. I went back to my primary and rheumatologist. More labs, x-rays, CT scan and was put on prednisone which again relieved all my symptoms. I was sent to an infectious disese doc who told me that being on prednisone I'd be sicker, no better, if I had Lyme. I was kept on prednisone for a year.
I was then weaned-off the prednisone. Within 6mos symptoms came back. Put back on the prednisone, more x-rays, another CT scan. This pattern continued (on and off prednisone) for 4yrs.
I dumped my primary doc and got a new one. Last November he decided to test me for Lyme one more time. The results were off the chart. Suddenly everyone's hair was on fire. I was sent to a neurologist, had an MRI and was going to be referred to the same infectious disease doc that had blown it 4yrs earlier. This is when I decided to take charge of matters.
I contacted the Chief of Infectious Disease at the nearby medical school/hospital and got an appointment. They took matters seriously and I was very happy with the time and attention afforded me. They re-tested me, arranged for a spinal tap and within a few weeks had me on IV ceftriaxone.
Within a few days ALL my symptoms resolved. 2 weeks in I had a flare-up but that quickly subsided. No Herxing. Dealing with the PICC line (mainly showering) was a PIA but there was no question it was worth it.
After 30days of IV ceftriaxone I can happily say I am 100%. As a matter of fact, until recently I had forgotten what feeling good was --- it's been so long. My doctor asked me to join her at the medical school and present my case to 2nd year med students and other doctors which I did this week. My doctor is committed to wining this battle and if --- God forbid --- symptoms re-emerge, she already has a plan.
There is hope. Maybe this protocol won't work for everyone. Not everyone can tolerate the IV or the IV antibiotics. But I'm evidence that even an advanced, poorly mis-managed case can be treated. It may not always be necessary to seek-out unconventional treatments.
Posted by leogrl54 (Member # 10770) on :
What a great idea!! I too used this site as my support for several years. I got sick 2004, diagnosed 2006, treated with a multitude of oral and long term IV antibiotics till 2008. At that time I became very septic with MRSA and (wierd one)Nocardia. Hospitalized for 2 weeks, home on oral antibiotics and tube feedings. Finally, 2009 started true recovery. Had great docs, extremely supportive family and of course LymeNet.I have had relapse and now on 3 antibiotic cocktail. The story is long and has been experienced by many on this site. I am again recovering. Never as sick as originally. My advice is keep trying, keep smiling!!! It can get better. Grateful for every good day
Posted by deerose (Member # 27484) on :
I have not been on lymenet for a while. (I needed to live a little more like I was not sick.)
I am here now to encourage others because I am so much better.
My story started in Nov 2007 when I experienced sudden excrutiating pain followed by paralysis waist down and diminished bowel and bladder control. I was hospitalized through the ER. MRI's, blood tests, spinal tap and three days of IV steroids. The no no. Diagnosis was mild inflammation of unknown cause: transverse myelitis...which basically means neuro compromise from waist down. Prognosis: it will fade away in 3 months.
Right. PT for 6 weeks and basically waited. I stopped seeing neurologist for him to charge big bucks to tap my knee for reflexes and watch me stagger.
Regular MD had some complementary approaches but it really did little and she said I was at or near "medical end". Nothing more medicine can do.
I did not know where or what but I did not buy it. Fast forward two years and a friend had been seeing a practitioner of electrodermal therapy. Generous friends made it possible for me to do that.
Short version: she found the lyme. At first she was not too concerned until a lyme patient in a wheelchair with convulsions came in see her as a last resort. (that gal is a now a near miracle recovery)
That caused her to take it seriously and get on a faster learning curve with tickborne illness. Her detox and buildup strategies helped a lot. but not everything.
Roll forward to spring 2010. I was falling into a deep dark hole of despondency and anxiety. My professional background told me it was pretty severe. Since it did not show up on the EDt she said iwas fine. I was not.
And very much like PTSD. I had catastrophic obsessive thinking 24/7 and wanted to die.
I was not suicidal though. I came somewhat out of that pit due to prayer intervention in early summer. In retrospect i believe it was mneuro lyme effects and undiagnosed bartonella but will never know for sure. I had bart symptoms.
Then that summer I became a double winner. Another tickbite and this time four infections: lyme, erlichia, bartonella, babesia.
On top of the chronic infection, I was so very sick. I did have the EM rash and went to the ER to have it medically verified. MD gave me the usual shortcourse doxy.
I found lymenet within 24 hours and contacted a support group for lyme literate help. I was in a lyme literate licensed naturopath's office within 48 hours.
I had almost run out of money so had not seen been to the electro dermal therapy screenings for a few months but had maintained the protocol for the most part.
I had enough for the appt, the abx and the cd-57.
So ensued more symptoms, fever, chills, the ball and chain fatigue, more neuro symptoms and effect on mood and thinking, word retrieval problems, short term memory issues, skin rashes, herpes activated, EBV , the parasthesis was worse, stumbled and staggered, but at least I walked when i did not have the crushing fatigue.
Antibiotic regimen pretty much approximating ILADS guidlines. Herbal tinctures rotated hitting the microbes and supporting body, homeopathics, lots and lots of supplements, vitamins, minerals, things to prevent yeast and so much more. All of it had impact.
I hung in and endured and endured some more and then endured some more but gradually I saw changes for the better. Adrenal support eliminated that ball and chain crusher...not all the fatigue but that part of it.
I was heartened. I managed to keep yeast from taking over with her recommendations. and reading here. I used way more probiotic support than she recommended because of what I read here.
I read here a lot. Helped some others here and there I hope. Half faked it to people in life around me so I didn't have to explain the whole ordeal but also as happens I did not "look" as sick as I was.
that was hard. i wanted to be supported and validated for how sick this made me but at the same time I didn't want pity and hovering.
In retrospect i think it would have been better if at least a few people knew how terribly ill I was. I live alone.
I fought guilt for not living up to what I though my professional responsibilities were and endured some more.
Gradually things improved. Fast forward to being off antibiotics in June 2011. still on everything else.
Had a visit to EDT and no disease processes were detected as active. This was a huge deal. Through the summer of 2011 I continued to improve. I joined a family vacation in July and improvement was even more marked.
I have maintained that wellbeing and gain ever since. My LLND warned that I was in a tender place so don't push it.
I continue to maintain and feel good. I am trusting this enough as I approach the one year off abx to come and share this.
I am almost in a dream even while I am reclaiming that I have a life to live.
It is not the same. I am not the same. I never will "go back to how it was". too much has happened. I am still not sure what my dreams are for the future but I can make plans. That is a big deal. I can make plans!
For next week or next month or even tomorrow and have a reasonable expectation that I can do them.
I do still have parasthesis in my lower legs and am slowly rebuilding stamina. My pace is altered but that is as much personal choice now. the way I want to live now.
I still notice gradual improvement for example in word retrieval blocks. Even in the last few weeks it is almost not there.
I continue on my organic low carb, moderate fat and protein nutrition. I continue on certain herbal protocols and mineral and vitamin supplements. enzymes, probiotics and so forth.
So effort is still required to maintain. Sleep habits is tough but I will eventually get there.
I sometimes have anxiety but it is easily managed now with homeopathics PRN and getting a grip on myself.
all of this is to say that I have a life that is not dominated by being sick and symptomatic and treatment and office visits and all about making it through another day.
I don't know what normal is exactly anymore but I am way better than I was and have gained some better health habits on the way besides.
My outlook spiritually and emotionally has changed. It is a different life season.
Life is good. My kitty died and my stepfather died during the worst of the Lyme ordeal.
I think I have some deferred grieving here and there. but life is good.
Life is good. I am grateful.
May you have hope.
Posted by Alexandru Matei (Member # 37348) on :
Boy, I do love to read these stories ;-)
I am no where near, to being bed ridden, or maybe I would have to be bedridden on some days but I just don't.
Most of the days I HAVE to stay on the computer so I can fulfill my daily tasks (with massive head pressure and back pain, dizziness you name it).
Not diagnosed, not treated (can't afford it yet).
Alex
Posted by madge (Member # 13704) on :
Hi Lyme Net...have not posted in a long time... so glade to post here...
My hubby who has been in treatment now for 5 and a half yrs...is so much better..we just got home from Lyme DR and he can now go every 3mts...
his pain was always in his head and eyes...he has be in a dark room all this time..
the past 6 months things have been so good...he eats better...talks...enjoys his grand kids now...he was so week ...we now are starting to take walks...he is still weak...but wants to do things...
i am so glad i found Lyme Net...it has and will always be good to come here and check thing out.
thank everyone here...you help so many people and i don't know what i would have done with out you...
i am so happy to see my Hubby talking and just taking part in life again....i really didn't think it would get better...again thanks and i will keep all of you in my prayers...
Madge
Posted by JessieJoy (Member # 37502) on :
Hi friends! I haven't been here in a few months. I used to post under JessJoy, but had to change my user name because I was unable to post due to computer issues.
Anyway, if you search my old posts, you can see that I was VERY ILL last year. I actually thought I was going to die a few times. Turned out I had Bart and Lyme.
After 5 and a half months of antibiotics (Levoquin and Doxy), my body started rejecting them. I turned to the Cowden condensed program not expecting much but holy crap IT WORKED!!!!I'm almost symptom free and I'm in month 5.
Most of my debilitating symptoms began clearing up after 3 months into the program. Two things that I have to avoid at all cost are sugar (or sugar substitutes) and caffeine.
I am so pleased with my progress, I just wanted to share! BTW, I get Cowden discounted by 75% due to their assistance program. Thank the gods, otherwise I couldn't have afforded it. When I indulge in sugar or caffeine and end up paying for it, I take Gaia herbs Japanese knotweed(resveratrol) and chug water with wormwood tincture (artemesia). Those 2 are my back up weapons and they really work, I pop 4 pills at a time and chase it with a quart of wormwood water.
THIS COMBINATION IS REALLY WORKING!
[ 05-14-2012, 05:08 PM: Message edited by: JessieJoy ]
Posted by MissMari (Member # 11274) on :
Hi Everyone,
My story is very long, but I will try to keep it short -------
When I first visited this site, back in 2007, I was a hot mess.
I had gone from being an independent, respected, full-time college professor, teaching medical courses (of all things)......
to a list of symptoms that kept me on the couch, and having to be virtually led around by my aunt.
At 82 (at the time) SHE was in better shape than me!
In my gut, I knew I had Lyme. I had been through SO many tests (that shouwed nothing) and SO many treatments (that didn't work) that I knew..... I was dying.
Seriously. Not only physically, but emotionally, socially, and every other way possible.
I was fortunate to come back here and find an amazing, thoughtful woman who was so kind to contact me, and offer me some choices of some excellent LLMDs, and even call their office to set me up an appointment (yes, I was THAT bad).
She was a true angel.
I often say that I owe my life to my LLMD, but honestly, I owe HER my life as well, for being there at a moment where I had no other place to go.
Remember, I had lost everything with this illness ---- EVERYTHING: my work, my health coverage, my home, my car, my relationships. I had to declare a bankruptcy.
I was SICK --- in bed, for days on end, holding my head and wishing I could put it through the wall to make the headaches stop.
I could not remember how to drive (losing the car made no difference at that point; almost funny).
I could not remember where I lived, how to lock a door, how to read properly, how to do simple math.
I choked on my food. My feet felt like they were on fire. My ears buzzed. My joints alternated in their pain.
I alternated between 3 emotions: confusion, rage, and deep depression.
I was going to kill myself, because I did not want to live with what I had to live with anymore, and I did not want to put my aunt through any more.
In other words --- typical chronic Lyme, right?
In 2009 I started treatment, a wide assortment of abx, sometimes in combination, along with some supplements and some other alternative stuff.
(See Burrascano protocol)
It took alot of work. It took alot of changing, dosing, pulsing, mixing, and tailoring the meds until something actually worked for me.
It took borrowing ALOT of money, and accepting "pay it forward" gifts from other Lyme patients who cared about me, to get to my doctor.
It took over 2 years to get where I am today.
Today it is amazing to me that I do not wake up with a pounding headache daily; that I can think and subtract and reason and read a book a day; that I can type here on a keyboard and it takes me only a few seconds --- and there's virtually no errors.
Today I sometimes suffer from a type of grief over the things I lost in the course of all of this, and I wonder if I will get any of them back to any extent.
Today I am grateful for the people who cared enough to help me.
Today I am telling any of you out there who are so sick with this illness, and sick OF this illness, that I am one that was not really expected to make it.
Period.
But I did. And I send you hope that you will too.
Get yourself a GOOD LLMD who listens, and will work with you as a part of a team effort.
Best to you, Mar
Posted by Meg (Member # 22) on :
Topic: I made it!!!! Maryland Mom LymeNet Contributor Member # 2043
posted 09 May, 2012 02:13 PM -------------------------------------------------------------------------------- Over the years, I've heard so many people asking, is there any hope of full recovery from chronic Lyme?
It is to those people that I write this. At about this date in the year 2000, I woke up one morning in Maryland with a deer tick embedded in my thigh. I developed an EM rash around the bite, but was denied antibiotics by the doctor I consulted.
In May 2001, I had become so sick I could hardly get out of bed for at least half the days of each month.
By May 2002, I was several months into treatment for Lyme with oral and IV antibiotics. My herxes were so severe, the herxes nearly killed me a couple of times.
I required treatment for Lyme and coinfections for years. I suffered from many neurological symptoms, endured several bouts of encephalitis and meningitis, had severe fatigue and joint pain, experienced pituitary malfunctions, and cardiac problems. My LLMD stated several times that I was probably in the category of people who would require maintenance antibiotics for the rest of my life just to survive.
This May, I am now off of antibiotics and all other treatments for four years. AND, I just graduated from nursing school, with honors.
Chronic Lyme can be beat!!!! Don't ever give up.
Posted by lymemom53 (Member # 9543) on :
I have been reading over all the posts to this board and it has been inspiring to read some positive news for a change.
I am writing on behalf of my daughter who is so sick right now due to chronic lyme-9 years of it.
She is currently off the abx as her lyme dr wants to test her in a few weeks for co-infections. It seems to be making her worse and I am praying that she can make it until then.
I am trying to help her look for other lyme docs and/or alternatives in VT. After reading these posts, I am hoping to hear from others in the VT area who have experienced some positive life changes.
We could really use some positive outlooks.
Thank you much!!
Posted by knowbytouch (Member # 37804) on :
I tested positive for Lyme and had a couple weeks antibiotics prescribed. On my own I took Vit. C for five (5) months, ranging from 15 to 40 grams (40 1000mg tabs) daily. That took care of most of the symptoms, but it was still as if I'd suddenly become arthritic. My "still, small voice inside", or intuition, seems stronger that most people seem to have, and when I was perusing a listing of herbs I felt I ought to take wormwood (Artemisia absinthium). I got some dried from a health food store, ground it finely and filled capsules. I took about 1000mg daily and after ten (10) days the pains ended. I've continued to take if for a few months, will take it for a few more, but will then quit.
Posted by nonna05 (Member # 33557) on :
does that mean you were diagnosed early and this simply killed it??
Posted by cozynana (Member # 34270) on :
Looks like a long time since anyone has posted, but I am game to put in my two cents.
I have been sick off and on since I was 17 with various mysterious symptoms.
When I went into menopause in 2009 and turned 51 I crashed hard.
I have been to over 55+ doctors and alternative doctors.
Just over a year ago my PCP told me he want to send me to his friend who was a gyno.
I thought that was good because I had cycsitis. She patiently listened to all my symptoms and said "I know you have cystitis, but worse, you have Lyme.
How do I know? My 3 friends are just like you".
I went to Dr C in Mo. He was too intense and too much info for me.
I ended up with a DO in Co. that is LLMD. I started 10 months ago.
I have made huge strides. He has taken me to a new level of health.
I also have had a hysterectomy, 3 kidney surgeries (stones), 1/2 of my thyroid, nodule the size of a quarter to half dollar, and 3 of my four parathyroids removed.
I am also currently going to emotional clearing.
Which of these made the biggest difference. I don't know.
Between all the Lyme meds and herbs plus these previous and current surgeries who could tell.
All I know is that at one time I begged to die because I knew it was impossible to get well.
I now smile, can drive my self anywhere, capable of fixing Easter dinner, walking in 5Ks, and planning my future.
I still am on herbs and also doing pelvic floor dysfunction therapy.
I tell my hubby, it is like there was a tornado in my body and now I have to go back and clean up the destruction.
It is not fun, but glad to be back with the living.
I am going to be cautious and careful to continue a maintenance program.
I know how fragile I am and need to continue to improve my health and immune system.
I eat only healthy foods and drink nothing but water and lemon juice.
It gets very old, but the alternative makes me stay on track.
I am grateful to be better and think that I will get to see my grandkids grow up and see them get married and have kids.
Not something I thought would happen a year ago.
I have learned some hard life lessons in this journey and I will NEVER take a day of feeling decent for granted again as long as I live.
My goal is to keep the faith and know some day there will be a cure that will set us all free from this monster.
Posted by Phoiph (Member # 41238) on :
Reading success stories was very important for me when I was hopeless and at the depths of my illness, and I vowed that I would post mine if I ever "got my miracle"...
Well...I GOT MY MIRACLE...and since you never know when YOUR miracle is going to come, you must never give up, and never accept that this will be your life forever, however defeated you feel.
I had severe neurological Lyme w/Babesia & Bartonella for 8 years...considered an antibiotic failure, and so ill I was homebound for 5 years straight. My mental and physical symptoms were extreme and too numerous to list, but included severe, relentless neuropathy from head to toe (which, incidentally, became worse whenever I stopped moving...hence NO rest...ever). I was told, even by LLMD's, that I was the worst case they had encountered, that I needed a miracle, and there was nothing more they could do for me (I tried many, many protocols with never any improvement, just a continual spiral downward). I thought there was no way out of the nightmare I was in.
I eventually became so ill and environmentally sensitive that I could do no treatments for 5 years before starting (MILD)hyperbaric treatment w/supplemental oxygen (I bought my own chamber and self-treated 1 hour daily).
I now have my life back...working again, running (I had been a runner for 17 years), traveling, etc. It has been a miraculous recovery, and it is 100% due to mHBOT (along with meticulous diet, and gradual exercise).
I believe success depends on the frequency, consistency, and duration of use...many people say they "tried hyperbaric, but it didn't work"...but if you query them, inevitably they didn't do it consistently or frequently enough...or for long enough duration. It was definitely a rocky, 2 step forward, 1 step back recovery, but I'm BACK...low (pressure) and slow hyperbaric WORKS...I'm living proof...
Posted by Winter Park (Member # 41655) on :
Ive never taken IV antibiotics for Lyme but oral antibiotics are helping me. Don't know if Ill ever be cured since the rate of improvement is so slow. But its better than before when symptoms were getting worse. I take Minocycline 100mg in the morning. A couple of hours later I take Penicillin VK 250mg. An hour after that I take Clindamycin 150mg. I stagger the meds and take Minocycline first so that the other meds wont interfere with absorption. I take the same meds at night, so twice a day.
The interesting thing for me to find out was that I noticed an improvement only after changing my diet too. Mostly eat just poultry and white rice with tomatoes and onions and garlic. I don't like to take vitamin supplements because I like to think Im depriving the spirochetes of nutrients. Before I changed my diet but was taking the meds my symptoms did not get better but they did not get worse.
Even on my worst days it is not as bad as it was before. I feel pretty good most days. Its taken about 4 years with the combination of diet and meds to get to this point.
Posted by Lymetoo (Member # 743) on :
In 7th grade he was a gifted basketball player and he had a severe case of bilateral Osgood-Schlatters. He spent one full year resting.. no jumping or running, no PE. He got better. He played 4 years on his high school varsity team and was the team MVP every year.
He had lower back pain sophomore year that went away with steroids and some rest.
Senior year, at the end of the year, ready to go to college and play ball, he came down with a severe reactive arthritis. He was 19 he developed the hallmarks of AS including costochondritis and enthesitis in multiple joints. Both ankles, both knees, both hip flexors, both shoulder enthesitis, and the worst part (and most scary given my family history of undifferentiated spondyloarthropy) costochondritis. The costo was the most painful and the most disabling part.
The immediate trigger was a very bad gastroenteritis with diarrhea.
3 1/2 years later and he has no symptoms. He's back playing intramural basketball and soccer at college and he's been well for about 18 months. Maybe it's a remission, but we'll take it.
The key is to find the right doctor... one who is open to and experienced with a wider array of treatments than the mainstream rheumatologists.
I come from a family with lots of arthritis. I'm 55 and have 4 siblings with serious arthritis, two have Crohn's disease as well, and two have had the diagnosis of AS. One has a completely fused ribcage and three have been sick since their teens.
I knew from previous research that there were many doctors out there that believe in antibiotic protocols for arthritis. I found roadback.org -- a forum for patients using those protocols-- and I wrote to them for a doctor.
We chose one, a rheumatologist in Northern Virginia, just outside DC, who is not only an AP doctor, but also a well-known Lyme doctor. She tested my son for all kinds of infections, and it turned out that one of his problems was untreated Lyme Disease. She treated him with IV and oral antibiotics, anti-parasitics, anti-fungals, and anti-virals over a period of two years. (Four months of IV for the Lyme.)
Remember, a negative test result does not mean you don't have Lyme. In Virginia they just passed a state law forcing doctors to explain to patients that a negative test does not prove that you don't have Lyme.
He now has no symptoms of arthritis... he is now 22. He's back at college fulltime and playing intramural basketball and soccer. I urge you to find one of these doctors and ask on roadback.org
If anyone wants more information, feel free to PM me.
Posted by flutter11 (Member # 42315) on :
Hi All,
Has anyone recovered from Lyme disease using natural remedies, herbals, IV ozone or oxidative therapies? Homeopathics? I'm not doing antibiotics and would love to hear some success stories.
Thanks and love to all! Flutter
Posted by kimmie (Member # 25547) on :
[ 02-06-2015, 11:33 AM: Message edited by: kimmie ]
Posted by Lymetoo (Member # 743) on :
@ flutter11 - yes, Katina Makris has. You can read her book Out of the Woods. Best.
Posted by SLML (Member # 42986) on :
@flutter11 - Katina Makris used herbs, homeopathics and rife.
Posted by booolyme (Member # 43446) on :
If you are scouring the internet looking for firsthand “success” stories, please keep reading. Although I cannot yet say that I am fully healed, I am well on my way. Do not dismiss this because I do not yet have an entirely clean bill of health. The words “well on my way” are new to me, words I have never been able to say. I still have my struggles, but I am no longer suffering, and the difference is something that I do not take lightly. I am writing this message for one very simple reason. Like many of you, I have had dark days and troubled times when I wanted nothing more than hope. It is difficult to find positivity and hopefulness on the Internet… I would read posts of desperate people, people like me, begging for a glimmering example to aspire to, to look toward, to show that people do get better, the fight is not in vein, and there is a proverbial light at the end of the tunnel. I couldn’t understand why there was hardly a positive story to be found – could it be so hopeless? Having gone from a year spent largely in bed or on the couch, to typing this from my office with a full undaunting day ahead, I owe it to you to set the record straight. People do get better. I am getting better. But once that process finally begins after spending what seemed like an eternity living in terror and despair, you do everything you can not to look back. I made the difficult decision to sacrifice more than a year of my life to intravenous treatment. I have had lyme disease since I was eight years old, with the gamut of problematic symptoms and ever-increasing neurological complications over the last 5-7 years. After years of failed oral regiments, futile holistic programs and false hopes, I committed myself to recovery, no matter the cost. My doctor advised that I would forfeit this year of my life and that I would need to lean on my support system to even make it through. Boy was he right! I will not belabor the painful details that this treatment bestowed upon us. I will tell you that this year+ was more painful, frightening and solitary than I ever could have imagined. I lost myself. My loved ones lost me. But what a joy it has been for us all to get me back!!! I firmly believe that cyber evidence of success stories are few and far between not because they don’t happen, but because once they do, you relish in removing the word “lyme” from your hourly vocabulary. While it still makes its appearances in mine, its frequency has been replaced with words like “honeymoon,” “conference call” and the question “what do you want to do today?!,” laced with possibilities. Lyme disease has consumed me & mine for years – when you finally get the chance to move forward, it is a painful and often detrimental exercise to look back.
Stay positive. Find a program that you believe in with a lyme-literate doctor that you trust and dedicate every ounce of your being to it. Do not cheat yourself out of the life that you deserve. Do not read the negative information disseminated on the internet and the like. It will do nothing but scare you and make you less hopeful in a time when your faith and positivity is EVERTHING. Lean on your loved ones and remember that though you may feel loneliness and even resentment when they are able to head out the door to work each day, this burden is not yours alone. Remember that they too are lying awake at night in a troubled mind full of prayers for an answer, a sign, anything to make you better. Fight together. Their love carried me through.
At the risk of being repetitive I will say once more…. STAY POSITIVE! There is hope, I promise you. Don’t give up. Smile
Posted by Lymetoo (Member # 743) on :
I started having dizzy spells in 1998. I would be sitting in my office chair and feel like the chair was spinning. I went to 30 doctors, had every weird neuro test, but just kept getting handed a bottle of valium and told to just deal with it. Then I read an article in an outdoor magazine in my dentists waiting room about someone with Lyme with identical symptoms. i showed the magazine to someone who knew someone else with Lyme that was going to the best Lyme doc in the US, in my home state of NJ.
My symptoms were: Arthritis in hands, ankles and neck Total short term memory loss Some long term memory loss- if my wife walked away from me in a store, I would not recognize her unless the kid with me called her Mom Could not find my way out of our local grocery store, I would have to have one of my kids lead me to the front of the store Mad Lyme face regularly, so I would snap at my wife and kids for no reason Could not drive more than a few blocks from my house without getting lost Claustrophobia and panic attacks, which I never had before
I had pretty good insurance, some savings and a family that were supporting me, so I started IV antitbiotics very early in treatment to combat the neuro symptoms. Had massive herxes whenever we increased dosage. Every time my doc would ask if I wanted to take a break from treatment, I said "no, lets hit it harder", but I paid for that with bad herxes. I spent 4 years on IV, with numerous pic lines and then Hickman catheters in my chest. I was very lucky that I and my family had the financial resources to do this. Insurance paid for about $200,000 of it and I paid about $300,000. After 4 years of IV, I seemed to be cured, but I asked my doc to leave me on the IV for 3 more months to make sure the Lyme was dead. I new the Lyme was gone when my memory came back. Over a 2 week period, my whole life replayed in my mind, including the emotions with each event. That was in 2003. Now, 11 years later I am Lyme free, with only a small amount of residual arthritis, and some difficulty with claustrophobia, but this is rare. So it is possible to be cured, but i had to go after it aggressively.
Posted by Brussels (Member # 13480) on :
Cure does exist, no matter what you keep hearing. I'm lyme free and treatment free for more than 5 years. No relapse, no treatment, despite new tick bites (many of them).
My daughter still relapses once every 2-3 years (or she gets newly infected, as she is also constantly bitten), but her treatment lasts about 30 minutes (10 minutes per week) and after week 2 or 3, she's again symptomless and need no longer treatment (we use photons and nosodes).
It took me 4 whole years of non-stop treatment (mostly homeopathy, tapping, detox, heavy metal detox, teeth surgery, taking off amalgams, treating emotions, doing diet against allergens...) to get reasonably well. But I kept relapsing.
What stopped relapsing for me were photons with nosodes (Infrared therapy).
We followed dr. K' s approach, done by two different practioners and own trial-and-error treatments (based on energetic tests).
Before I used energy tests, my improvement was very slow. It was ART, then own energy testing, that speeded up the process, I believe.
So both me and my daughter, who got many bites every year too, we only used alternative treatments. First we can't be living on antibiotics the whole life (they destroy the GI flora and cause us terrible tummy pains), and second, I don't believe antibiotics cure chronic lyme.
We used Buhner, Cowden, Chinese herbs, homeopathy, Sanum. In the end, our anti infective treatment was only infrared and nosodes.
We are both without lyme treatment but still doing the KPU treatment (taking zinc and some other supplements), still taking chlorella on and off. We started now a gluten free diet, because of my daughter's GI problems (she does not absorb well some nutrients, and her nails are weak). Typical case of KPU, said the doc.
Now, 5 years after treating lyme, I decided to visit my lyme doctor again to treat my dead teeth. I believe they mostly died during lyme, as I was very very bad.
And I took my daughter to see the doc too(for the KPU treatment).
He was so excited to see that I didn't relapse during all those years (I haven't stepped my feet in a MD surgery!). He knows how bad I was initially. Well, he decided to buy the PE1 (infrared device) and probably will start using it with his own patients!!!
No residual symptoms, probably just my white hair that remained white, after lyme was gone. Otherwise, lyme free!
Just keep searching and treating, when a treatment doesn't work in 2-3 months, change it. Just never ever give up!!
[ 10-22-2014, 05:01 AM: Message edited by: Brussels ]
Posted by carriekaye (Member # 43533) on :
I just wanted to post some encouragement that it is possible to get better. I haven't posted in a long time, largely because lyme is no longer a major issue in my life anymore.
My daughter was misdiagnosed for at least 5 years. We got to an LLMD over a year and a half ago, from a recommendation I received here. She was nearly bedridden, and completely disabled at that point. But today she is functional, going to college, looking for a job, and at least 95% better. She's still symptomatic for babesia, but improving. Her LLMD says he believes her lyme is in remission. And her mast cell activation syndrome is under control with diet and medications.
So it is possible, with the right doctor on board.
Posted by Bitten in Bergen (Member # 34067) on :
Guess it's time to check in - haven't been back much, as my family and I have all been improving. We had a lot of misdiagnoses, ineffective treatments, treatments that made things worse, and llmds who gave up on us.
It took 10 months to reach our name on the wait list, but we finally got an appointment with a top llmd with a reputation of actually getting people better. Again, I forget who here on lymenet helped with that, but a huge "thank you" is in order (all of my old messages were deleted for space).
This llmd is far from our home, but has given us back our lives. Aside from the physical symptoms, each of us was suffering from severe mood issues as well. Within a few short weeks, she was able to resolve the mood issues for each of us - two of us had been on long-term psych meds that we now were able to stop. That was a few years ago already.
One of my children even had lyme-induced autism. This llmd again was able to restore them to full-function to the point where anyone meeting them would think they are "normal" - physically, emotionally, socially.
Our therapy was integrative - it included traditional antibiotics, but also a carefully orchestrated combination of herbals. This llmd treated the whole patient - not just the lyme and co-infections, but also the additional underlying viruses and medical issues that we weren't even aware of.
In my case, I had lyme, babesia and bartonella, but my main symptoms were babesia - anxiety, shortness of breath, palpitations, heat intolerance, night sweats, severe fatigue. After becoming bedridden from the treatments of other llmds, this one got me back on my feet. I feel better than I've felt in 20 years.
It has been a steady course of improvement for all four of us and we hope to complete our treatment soon.
My advice to anyone is use the lymenet folks to bounce ideas off of - especially llmd requests. And if you feel that your treatment isn't working or your doctor can't give you a good explanation for what they are doing, trust your instinct and find another doctor. Don't waste valuable time waiting to get better. It won't happen overnight, but with the right llmd, you will see improvement, even if it's gradual.
Don't give up. Improvement is possible.
Posted by beths (Member # 18864) on :
January will be 3 years off abx after an 8 year struggle. I too, was really sick, had heart issues, gastroparesis and POTs. I went thru 3 LLMDs till I found one I felt could help me. Treatment was awful. I thought about throwing in the towel several times. But here I am today, 100% better, living a great life. It takes time, faith and determination It can be beat Posted by me (Member # 45475) on :
That is wonderful, Beth! Congratulations! How long were you on antibiotics?
Posted by Brussels (Member # 13480) on :
It's been 3 years since I last posted here in success stories.
3 years ago, we could relapse after a new tick bite. I mean, short relapses that were treated very briefly, like we treat a cold...
Now, tick bites barely do anything to both of us, daughter and me.
It probably means our immune systems are getting better at least against tick infections...?
My teeth stopped dying for no reason too.
We are still treating the KPU problem, still trying to get rid of food allergies, now with plasma remedies. The only form of zinc our bodies accept are plasma imprinted zinc,without any real zinc atoms inside.
But Lyme feels definitivelly past history. Its been now more than 8 years symptom free and Lyme treatment free.
The great discoveries for me have been high frequency - my violet ray , plasma imprinted remedies and kimchi.
We still continue using ART to find problems and still using quite some homeopathic remedies to try to heal mineral deficiencies or bad absorption of nutrients.
Candida still returns during winter for me. For less time than before though. I developed some joint candida, I think. Age is a factor, and my chronic candida has to improve.
This year I'll be trying to add an ionic foot bath and one PEMF device to help us detoxing better.
For me, I have no doubt that our Lyme disease was a manifestation of a chronic problem, a whole body disease, weakness...
My daughter and I are done with Lyme, but we're still trying to treat the body as a whole and its underlying conditions, in hopes we don't fall so I'll again.
Keep treating. Not infections only, but the whole body and the immune system.
Posted by grandmacow (Member # 50839) on :
can someone please tell me how to get on to the chat Thanks
Posted by grandmacow (Member # 50839) on :
I am having a really hard time trying to figure this out !!!Could somebody please help me ..I have lots of questions ..and maybe someone can please help answer them for me
Posted by TF (Member # 14183) on :
Here, one of our posters named Bartenderbonnie gives you a good description of how to post your questions on LymeNet.
If you still have trouble, just post under Bonnie's post and ask your questions that way.
We will answer you either way. We will help you all that we can and we are happy to have you!
Posted by Evin98 (Member # 50026) on :
Progress report:
Hi everyone. Here is my story and good news:
I got bitten in the Hollywood Hills in Los Angeles in 2003 or 2004. Pulled an engorged tick off my belly and developed a rash. It seemed strange and I was a little worried. I even remember looking up "ringworm" on the internet, but I had no symptoms other than a red ring and I simply forgot about it.
I knew nothing about Lyme at the time.
In late 2004, my knees blew up painfully. It came and went, later spreading to my ankles, elbows, back, neck and jaw. As the years went by, it got worse.
By 2008, I was winding up in the emergency room with excruciating attacks of pain in my insteps. I was partially crippled most of the time and used a cane. Doctors gave me a series of misdiagnoses: sciatica, gout, pseudo-gout, and palindromic rheumatism.
By 2012, I was having trouble working. Drenching night sweats, full-body convulsions, unmentionable gastrointestinal issues, crippled limbs, and mind starting to break down.
During the last five months of 2012, I took minocycline on a hunch (I didn't know what really wrong with me, but by that time, I no longer believed in the autoimmune theory of disease).
After 5 months of mino, I got ALL BETTER! It felt like a miracle from Heaven. I felt so good and full of energy that I went manic and took up skateboarding at the age of 44. I though I was cured.
After a couple years, the symptoms started creeping back. It broke my heart.
In May 2016, it suddenly got much, much worse than it had ever been. I went from sort-of-functional to unable to even sit up or care for myself. My brain felt like it was boiling in acid. I was asleep 18 hours a day.
I returned to my hometown in Florida to die (or so I thought).
In Florida, I received the first thorough medical examination I had ever had -- one full hour -- from a family doctor. He said "get a Lyme test."
The test came back positive. When I saw the result, I remembered that tick bite all those years ago.
That doctor wouldn't treat me, because of course I couldn't have Lyme if I had once taken Minocycline (ha ha).
It took 8 months to find a doctor who would RX a PICC line. It took BEGGING for me to get it. I paid cash for the implant: $470.
I have been treating with IV Rocephin for 4 1/2 months. Recently added 6 days of IV Clindamycin a month (more begging). Both of those are Q12 at the PROPER DOSE (I believe that is crucial). I pay cash to an infusion clinic: $35 per day for medication, dressing changes, etc.
In 4 1/2 months, I have gone from 12 years of untreated Lyme, and being a bedridden vegetable in unendurable agony, to almost able to work.
I can now drive a car, make phone calls, stay upright 6-8 hours a day, walk, etc. I can even fool people into thinking I'm not sick, if I need to. I'm not the man I once was, but if this is all I get from treatment, I'll take it.
IV ABX works!
Thank you to everyone on this board who gives the rest of us hope.
Posted by HW88 (Member # 48309) on :
Glad to hear the good report. We all need to hear happy stories! It gives us all hope. Congrats and cheering you on!
Posted by LymeLearned (Member # 20565) on :
Evin98, THIS is so encouraging! TY for sharing! My daughter lives there in LA now and I hope she is careful.
I am stuck. Can't get well, but I don't die. Just stuck, but I can type for short bits, so I still exist somewhere. Thank you for the hope!
Posted by Keebler (Member # 12673) on :
![[hi]](graemlins/hi.gif)
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Pain is horrible and is getting worse. I want to die.
