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 it's just there for historical reference so you all can read the older Success Stories.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 ]
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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bettyg
Unregistered
posted
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
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
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
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.
-------------------- To win this battle, make the time for exercise and fitness activities! There is no shortcut to any place worth going! pegee4 Posts: 59 | From Hamptons, New York | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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
Posts: 2549 | From never never land | Registered: May 2005
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posted
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
-------------------- ..." ...almost basically together situation." unknown quote from somewhere Posts: 441 | From USA | Registered: Sep 2001
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bettyg
Unregistered
posted
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
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posted
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
-------------------- ..." ...almost basically together situation." unknown quote from somewhere Posts: 441 | From USA | Registered: Sep 2001
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Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
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.
-------------------- Virgil and Mary Posts: 58 | From Wisconsin | Registered: Jul 2006
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posted
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 ]
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
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
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
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
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I put this link at in top in Newbie Links Page 5. Success Stories
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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!
-------------------- Jenn Posts: 9 | From New Jersey | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
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.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
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
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Melanie Reber
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Member # 3707
posted
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
Posts: 7052 | From Colorado | Registered: Mar 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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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
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
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.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Member # 7136
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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TheCrimeOfLyme
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Member # 4019
posted
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!
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
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. Posts: 1603 | From ny | Registered: Aug 2006
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posted
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.
posted
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.
-------------------- "It comes as no surprise, just leave the light on." Posts: 134 | From western PA | Registered: Sep 2002
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bettyg
Unregistered
posted
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!!
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posted
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!
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
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
Posts: 1086 | From Switzerland | Registered: Oct 2005
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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!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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bettyg
Unregistered
posted
cave, thanks for sharing your success story with us all!
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
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
Posts: 7052 | From Colorado | Registered: Mar 2003
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wow Cave. Just read your report. Yahoo! This is good.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
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!!
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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!
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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.
posted
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
Posts: 40 | From AZ | Registered: Oct 2006
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posted
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
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
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.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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
Posts: 2549 | From never never land | Registered: May 2005
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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.
But now I mainly sweep up their afteraffects.
Wishign you all happy holidays!
Posts: 3 | From Canada | Registered: Feb 2007
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