posted
Topic: My experience, my opinion roro Frequent Contributor Member # 13383 Posted 04 November, 2007 05:29 PM
I just want to post my experience here, in case it might help others.
I was originally diagnosed with lyme disease in 1995. I had three bite marks on my leg that turned red and expanded. the doctor notes desribed as "halo"
I did i think 4-8 weeks of doxy, can't remember. thought I was cured. a year later I started getting painful knees.
I was always very active, athletic, did a lot of hiking, camping, rollerblading, dancing, worked out at the gym.
for years I got the runaround, was diagnosed with CFS, depression, treated for hepatitis C. I got worse, but had periods of remission here and there where I felt ok. I now wonder if those were after antibiotics, but I didn't notice back then.
In 1999 I found a doctor who treated me with a lot of alternative therapies. He never told me he suspected lyme, but treated me with what I know now were lyme treatments. IV vitamin C, transfer factor, many other herbal and natural therapies.
when I did question about lyme, he told me I was negative, but i never saw the tests myself. he said antibiotics don't work anyway when you had it as long as me.
I continued to get worse despite all the natural therapies, diet, vitamins, etc. I also started taking cortef for adrenal exhaustion, and started having autonomic dysfunction. never did long term antibiotics.
In 2004 I went into heart failure, got meningitis, cranial nerve palsy and was admitted to the hospital. I have gotten progressively worse for the past 3 years.
I have been suspected of having ALS, MS, myasthenia and many other things because my symptoms are so severe. I have gotten no answers, no diagnosis, and no treatment from mainstream medicine. I have arthritis in my spine, and damage to several discs and 2 vertebrae.
narcotics kept me functioning at a low level for a couple more years. last year I stopped functioning. this past year or so, I have been very ill.
I have difficulty doing even the simplist things, like bathe, walk, have a bowel movement. I wanted to die this summer. I really was looking into physician assisted suicide. I cried every day.
since august 20th I have been on antibiotic. I have gotten a little bit better. my symptoms are getting better and I have some good days now. I no longer want to die. i no longer cry every day. my pain is better.
I still have some symptoms, and I still have bad days, but i am much better than I was last summer. I may have permanent nerve damage, so I dont know if I will get 100% better.
I wish I had gone to an LLMD years ago and tried long term antibiotic. maybe i would have prevented permanent nerve damage.
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CaliforniaLyme Frequent Contributor Member # 7136 Posted 06 November, 2007 08:56 AM
Annie Leach & her dog, Wolfgang Amadeus Mozart From old Lyme Alliance Story Archive ************************************************* Annie and Wolfgang Amadeus Mozart
1992 Muskegon Chronicle.
Several years ago, someone shared this story of Annie and her dog Wolfie's bout with Lyme disease with us. We often thought about their story, and wanted to share it with you. This story is presented with Annie's (and Wolfie's!) permission, along with an update that Annie thoughtfully gave us on their progress since 1992. ******************************* Annie Leach and her dog, Wolfgang Amadeus Mozart, have a special relationship. They became severely disabled with what was eventually diagnosed as Lyme disease. They suffered for a long time before their conditions were identified and treated. They made good recoveries.
Leach, 37, of Muskegon is an art teacher at Michigan Dunes Montessori in Norton Shores. She was stricken a year ago by a puzzling, debilitating condition. She wondered if she would be able to continue working. Unable to drive, unable to walk without assistance, suffering excruciating joint pain and headaches, the vision in her left eye impaired, Leach was at the end of her rope.
She had been battling an unidentified, worsening illness for more than a year. A host of doctors had tested and treated her for mononucleosis, strep throat, muscle-attacking viruses, migraine head-aches, sinus problems, mold allergies, infectious bronchitis, lupus, a nose polyp, thyroid disease and stress. Her medicine cabinet was over-flowing, but she wasn't getting better.
When a physician suggested that she take tranquilizers, Leach remembers thinking that she might be losing her mind. "I was really scared. I was getting this big psychological thing. I thought maybe I was just grasping at straws."
While Leach battled her illness her dog, a Jack Russell terrier, had been showing some of the same symptoms: listlessness, neck stiffness, lack of appetite. In late summer of 1991, a Newaygo veterinarian decided to treat the animal for Lyme disease, even though blood tests had not confirmed the Lyme bacterium's presence. "In a way." Leach recalled. ''the dog's problem helped me think about my situation. Our problems were very similar."
Leach's dog was named after Mozart because of his habit of hiding behind the piano when he wasn't feeling well. However, after several weeks of veterinary-prescribed antibiotics, "Wolfie" came out of his hiding place and began to behave in his usual playful manner. Inspired by her dog's recovery, Leach demanded a Lyme test for herself. To her disappointment, the test was negative. Desperate for a treatment, Leach turned to a medical practice in Saginaw she had heard about where patients suffering the symptoms of Lyme disease are often treated in the absence of blood-test confirmation.
By the time she visited one of the doctors at the Saginaw clinic in October, she had reached the weakened stage where "all I could do is stand in a doctor's office and cry. Someone had to hold onto me." The physicians "listened to me," Leach said. "They didn't try to pass it off and just prescribe medicine. They were really nice." A new series of blood tests and physical examinations, including magnetic resonance imaging, hinted that she might have Lyme disease, but the tests didn't confirm its presence. Undeterred, her physicians prescribed a series of drugs that began to reverse her illness. "It happened in stages," Leach said. "At first I got sicker, but then I started feeling better. I still wasn't feeling well, but I could see an improvement."
In January, Leach resumed driving, and she began having more and more "good days." She continued teaching and credits family and friends with helping her to continue her life. "They saved me from psychiatric treatment: the doctors (at first) kept saying I didn't have (Lyme disease)," she said. Leach still takes medicine to combat her symptoms, and visits the Saginaw clinic once a month. When she has had two consecutive symptom-free months, her medication will be reduced or discontinued.
Lyme disease has been in the medical literature since the 19th century. It is transmitted most often by the bacterial organism borrelia burgdorferi in the body of a comma-size tick called Ixodes dammini. The tick, most often found in Wisconsin, Minnesota and eastern coastal states, lives on animal hosts, particularly the white-footed field mouse and deer. It is often called the "deer" tick.
Update from Annie: In the summer of 1992, when the article appeared about Wolfgang and myself, I thought I was not only on the road to recovery, I thought I was there. I did not know what I was in for. I had been on Suprax since October of 1991, and could drive myself to work. During this time, I continued to teach part time. My students were very supportive, helping set up chairs and art supplies for me. It was a wonderful lesson for them in listening and learning from verbal instruction. My dog Wolfie often accompanied me to school and slept in the corner. During the summer I rested and slept a lot. Along with the antibiotics I took twenty-five acidopholus a day, and lots of vitamins.
In September after returning to work my symptoms worsened. I was put on Biaxin; that seemed to help. My condition was like a seesaw. I would feel great and then the symptoms would flare up. Basically, I worked and slept. During this time, Jeff, a CNA, moved into our home. In exchange for room and board, he took care of feeding me and caring for me. This was a great blessing. (If you live near a college, it might be an option for you, too.) Wolfie continued to receive cortisone shots. I went to a chiropractor. As many of you know, with Lyme disease, combining traditional and alternative medicines is a path to take - if you can find the right doctor!
Relying on my husband, George, as well as Jeff and some friends, I made it through the school year, but it was obvious my symptoms were worsening. It was decided that I would go on IV antibiotics as soon as school let out in June. I figured that this would give me summer to kick this thing! Wrong!!! In the fall, I went back to school with the IV still in. In the late fall, my dosage was doubled to twice a day. I began to gain back my strength, and on December 31 had the IV removed. During this time, Dr. Natole was a lifesaver. Somehow, he knows every little change in a patient's condition. It must be from treating so many people successfully.
After going off the IV, I was put back on oral antibiotics, and I continued to improve. This was not the dramatic improvement that occurred after treatment first started. It was very gradual, and many changes were so slight that no one could tell but me. At this time we had Wolfgang vaccinated, and he continued to improve. I continued on my regime of acidophilus, vitamins and rest. Over the next year-and-a-half, my progress was slow but improving.
In October of 1995, after six weeks of no symptoms I was taken off the antibiotics. In preparation for this I had researched, and found a doctor that believed in Lyme who would take me on as a patient, and who practiced homeopathic medicine along with traditional. Along with the acidophilus, I was given drops to take to cleanse my system of parasites. My goal was to stay off the antibiotics. Best of all, Dr. Ruth treats me as I know what I am talking about, and lets me make decisions.
Since October of 1995, I have been back to my stubborn Irish self. I'm back to work, and have even started working in an art gallery. Working around children and being exposed to many illnesses, I did not get sick. In the past several weeks, I went on antibiotics for a severe ear infection. I became extremely sick, so I went off them. That was about two weeks ago, and I am feeling better now. I believe that the bacteria are still in my system. For now though, I am blessed to be able to live, and do more than I thought I would ever be able to do. Wolfie receives his Lyme vaccine once a year, and we have found a vet that is just superb. There is hope - just take one day at a time.
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I think for my 36th birthday (Ok, yesterday) it's time to add myself to success stories as symptom-free. I did it by starting with a few months of antibiotics and then moved on to a year of Buhner Protocol herbs, and seem to be a 'textbook case' of what the Buhner protocol is supposed to do. Other people have had less success with it than I have, so don't assume it's a miracle cure for everyone.
Probably just Lyme, which my doc thinks is quite unusual. Possibly bartonella based on very mild symptoms but negative on bart testing.. Bad case of elevated mercury levels and problem eliminating it, can't chelate without getting Lyme symptoms badly it seems
quote:2. How long have you had symptoms?
6 years prior to starting treatment
quote:3. What herbal protocols or products have you tried?
Like most users here, I experimented with a lot of different stuff at various times during the past year for different symptoms or for candida or for detoxification of neurotoxins from the Lyme spirochetes.
-eleutherococcus tincture when I first started doxycycline at the end of my 6 years of symptoms, continuing to take it
-detox 'stuff' = bentonite clay drink (yech), later Solaray Detox formula with alginate,
Buhner protocol (the big three herbs plus stephania root for a few months
chlorella
garlic (raw frozen, also capsules): too much vomiting, probably helped control yeast and other stuff
boneset tea (for possible bartonella)
red root tincture (for possible bartonella)
poke root tincture, very temporarily (dangerous stuff, don't self-treat with this please)
turmeric
milk thistle while recovering from chelation problem
capryl for yeast
GSE for Lyme or yeast and later for ulcer in Buhner's ulcer protocol
oregano oil for yeast (didn't seem to do much)
teasel tincture at times (can't tell if it does a whole lot now when I take it occasionally, did think I herxed a bit on it at first)
huperzine A recently, doesn't seem to do a whole lot for my remaining word-recall memory problem
non-herbal products: EDTA for chelation
methylcobalamine B12 injections
WelChol when I first started antibiotics (not at the same time of day as antibiotics though) as a neurotoxin binder
undenatured whey
quote:4. What was the dosage and for how long?
Buhner herbs for just about 11 months so far (after 6 months of antibiotic treatment), following book pretty closely on this. Did full protocol of the core protocol for two or three months and then started experimenting with reducing.
other than the eleuthero, which I have taken for much of that time, I've tried the other stuff on the list for brief periods, up to 4 months on stephania root, 4-5 months of Solaray detox formula and 6-8 months on chlorella, and much shorter periods for the other stuff.
quote:5. Did you take with antibiotics concurrently? Afterwards?
I started treatment with doxycycline (no Buhner herbs yet) for 2 months, switched to azithromycin for 4 months and started Buhner herbs at the same time as azithromycin.
I only took the herbs-plus-azithromycin for 2 months of that, then stopped the herbs due to something making me feel extra-tired (azithromycin turned out to be the culprit). Symptoms went away at end of the 6 months on antibiotics, stopped antibiotics altogether, wasn't taking herbs at that time. I then relapsed very badly 1 month later.
I then started on Buhner herbs only. Only other antibiotic use: several months into the Buhner herbs, I took some biaxin for ulcer for 2 1/2 weeks, no visible effect on Lyme symptoms.
I started taking herbs around New Year's of last year. I had lots of ups and downs but the 'ups' got longer and longer pretty consistently.
I was symptom-free for a few weeks by month 5 of herbs only and continued to take them while I addressed other problems (ulcer and dental issues). During this initial period of 'symptom-free' I felt in absolutely perfect health, had amazingly sharp memory and word recall, so I have an idea that this will come back again with further treatment.
I then got a less-severe relapse after a mercury-amalgam-removal dental procedure in June, so I took amoxycillin briefly this summer (5 weeks) with no visible effect on symptoms, and concluded that these symptoms could have been mercury and not Lyme, as they're identical to what happens when I try chelation. Symptoms went away with just herbs since then. My only remaining symptom is minor memory problem- just very minor word recall trouble- but it's nothing outside the range of what's normal for most people.
I'm still on the core protocol but only take it once or twice a day at 3 pills a day (actually it's more like 2 pills of resveratrol and cats' claw, one manufacturer changed the formulas and is making bigger capsules since Buhner wrote his book).
I'm also taking adaptogens- eleuthero and schizandra (different times of day) and experimenting with rhodiola which doesn't seem to do anything noticable yet. Also taking turmeric for general brain health and capryl for ongoing yeast problems. Took huperzine A for a month but it doesnt' seem to do anything so I'm probably not going to continue. Other than that I'm not taking anything else at this time.
quote:7. Did you relapse after finishing the herbs?
Not done yet, probably not going to stop anytime soon as I know I still have this un-addressed mercury problem.
I and my LLMD both assume that I will be at risk of a Lyme relapse till I get the mercury dealt with as it seems to be related to all of my relapses (ie chelating always triggers a relapse of Lyme symptoms, and my one amalgam-removal procedure seemed to do the same thing).
I'm waiting to be symptom-free while on herbs for quite a while before tackling the mercury with chelation again as I always get sick when anything happens to my mercury levels.
I had been sick for 6 years before starting treatment with 6 months of antibiotics. The antibiotics didn't do the trick- I relapsed quite horribly about a month after stopping the antibiotics. I was pretty dysfunctional by the time I started treatment but I was no where near as badly off as some of the neuro-Lyme folks.
The symptoms I had were primarily exhaustion, extreme sleepiness, and severe brainfog, with this odd 'surface' skin pain along my back, some connective tissue injuries that didn't heal till I addressed the lyme, and sleep irregularities (either insomniac or sleeping for 14 hours). I had the really classic neck pain that I think Buhner describes as a variety of meningitis caused by Lyme. I also had sore eyes (like you haven't slept enough) and a few other woes I'm probably forgetting. I couldn't walk due to exhaustion for more than a couple of blocks by the time I started treatment. I also developed foot pain in both feet that felt like something was broken, that went away with antibiotic treatment, and I assume that's Lyme-related too.
My doctor thinks I might be the rare patient to not actually have (known) coinfections, though during my herbal treatment I got some mild Bartonella symptoms (roving sharp bone pains) and seemed to respond to/herx on Buhner's bartonella protocol (which I think would address some Lyme too, but that's my personal opinion).
I tested negative on the igenex test for Bart and have no babesia or ehrlichia symptoms so we didn't test for those, though I test very high in mercury so that's my big obvious complicating factor.
-------------------- Symptom Free!!! Thank you all!!!!
RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
Koryn21 Flash Member Member # 13926
Icon 1 posted 29 December, 2007 06:02 AM Profile for Koryn21 Send New Private Message Edit/Delete Post Reply With Quote Hey everyone.. It has been a while since I've been here but I wanted to give hope to all of you who are still suffering from lyme disease.
Well.. I am 22 years old now and In remission for going on 3 years. I got bit by a tick when I was 16 years old.. my parents and I didn't know anything about lyme disease when we found the tick. I never got a bulls eye rash.. no symptoms at all. Then two years later when A lot of stress was put on my body from a miscarriage my symptoms came on full force. It first started out with panic attacks, then it progressed into not being able to eat, drive, go out to public places because I was so sick. I had numbness, tingling and extreme heaviness of my arms and legs.. It kinda felt like I was going paralized. I had a hard time breathing.. this is the way I explain it.. It felt like something was taking my gravity away. It was so horrible. My general doctor could not figure out what was going on with me.
She sent me to all the specialists.. you name one and I've been to one. Every test was negative at every specialist. One day I got lucky, I was picking up my blood work from the neurology place I went to for a Thyroid doctor I can't remember the name for them. My mom was looking through the bloodwork.. shes a nurse and she sees that my lyme disease test was positive. I never got a call from that office telling me I had a positive lyme disease test.. nor did I know I got tested for lyme. So I called my doctor up right away and she told me to fax the results to her when I got home, so thats what I did.
I was so excited that they may have found what was going on with me until I got a call back from my doctor. She consulted with an infectious disease doctor in the area about my results and that doctor told her not to treat me due to me only having 2 reactive bands on my western blot and I needed 3 reactive bands to be considered "positive". I was so upset because I was so sick and tired of being sick and tired.. and I thought my prayers had been answered. My GP refused to treat me even though my mom gave her consent to expose me to a month of antibiotic's just to see if I'd get better or not. Man do I hate that quack.
After that I continued to go to specialists with no answers.. everyone thought I was nuts. Looking back on it now, I don't understand how they could think I was crazy when I was 106 pounds soaking wet and I couldn't gain a pound at all. (my height is 5'5) So.. One day while I was trying to live a normal life, I was at work and I almost fainted. I left work early.. called my mom up and said that if she didn't bring me to an emergency room outside of our area...(being that the local one thought I was crazy too since I visited the E.R. a couple times a week because I thought I was dying) I would commit suicide because I couldn't live like I was living anymore.. Being so sick and not having a diagnosis.
So my mother brought me to a hospital an hour away, a very good hospital at that. The E.R. doctor did not like the way I looked.. He ran blood tests on me.. and like every other doctor he thought it was an over active thyroid, so he tested that. I had told him that I came up positive for lyme disease and he tested me.. since my blood work was normal he sent me home WITH antibiotics and told me that the lyme disease test results wouldn't be back for a couple of days and that they'd call me if I was positive.
Well.. I got that call.. I was so happy, I started crying on the phone with the doctor and thanked him and said "I knew I wasn't crazy all along" So my mother and I then searched for a lyme disease specialist.. I found one about an hour away from me. I got a PICC Line and began my treatment on rocephin and oral zithromax.. I was treated for 90 days on that. I was Ok for a couple of months and then I relapsed.. The doctor then put me onto the PICC again and I was treated with IV Vancomycin and Rocephin at the same time...That treatment lasted 60 days.
Since then I have been in remission. If it wasn't for that lyme disease specialist I probably would not be alive today. While I was sick I never saw the light at the end of the tunnel.. I thought I'd never get better.. but I did.
I still have some symptoms of lyme disease as in CFS (Chronic fatigue syndrome) I still have difficulty with my memory but not as bad, and math with number reversal and anxiety still but I take medication for the anxiety. I do have a very very low immune system but thats a small price to pay for all that I went through.. I'd rather get colds more often then others rather then be sick with lyme disease.
I am working a full time job now, I am getting my life back in order. I plan to go to college soon.. Since I had to drop out while I was sick. There is hope.. I NEVER thought I'd pull through it and I did. I always keep the thought of relapsing in the back of my mind but I know theres nothing I can do about it if I do relapse and I know who to go to. I get tested for lyme every now and then just to make sure Im still showing up negative.
I just felt the need to give all of you that are suffering some hope.. I hope I helped someone see that there is a light at the end of that very dark tunnel. I will continue to post on here from now on because I know that when I was sick I never saw anyone in here who had been a success story.. only war stories.. no offence guys but I know that a lot of people who are in remission do not come to help those that are still suffering. So I will be talking with you guys soon.
<3 Koryn
-------------------- ~*In remission for 3 years!! There is a light at the end of the tunnel, just keep holding on!*~ Koryn Posts: 8 | From: Poke-A-Nose, PA | Registered: Nov 2007 | IP: Logged
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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posted
I just joined and am finding my way on the computer. Hope this is the way to reply?
I feel that I am a success in process. I've had Lymes for almost 20 years with the last 10 getting progressively worse until I was unable to get out of bed many days and was too depressed when I did get up to do much but a meal or two each day.
I had done all kinds of alternatives; herbs, acuputure, multiple therapies, the drugs, silver IVs, most of the stuff in Rosner's book and had no herxs at all, except one minor ache for 30 minutes my first time on the AC rife machine. Nothing after that. so was very depressed and hopeless since I wasn't even herxing, how could I get better?
Then I heard of "John of God", a powerful healer in Brazil. The first couple of times I heard about him I let it go. The third time I knew to pay attention. Fortunately my mom financed the trip as I have only SSI and disability for income. I know I am very fortunate to have her help. It was a horrible trip, 30 or more hours flying and in airports where people spoke Brazilian Portugese, which I don't. But I finally made it there and joined my group and leader (who knows the protocol and language).
I wasn't aware of much happening or improvement there or when I came home so thought nothing much happened. However I did finally have a herx, and what a whopper! Two days of intense pain everywhere (except my tongue). I moaned and rolled and cried continually pretty much. I'd never felt such intense pain all over my body. Funny I should think nothing much happened, huh?
About 6-7 months after this I am now working with a medical intuitive who says all the Lymes beasties are dead. Yes they are still in my body and yes they dumped alot of toxins when they died and that's still effecting me; and most importantly they tore up lots of organs and created considerable damage that will take quite some time to heal (which is why I didn't feel any better and thought nothing had happened). But,THEY ARE ALL DEAD! This gives me so much hope and thankfulness. I do consider that she may not have seen them all, so I still treat with the rife machines (AC and DC).
However my focus has changed from "Can anything help?" to "How can I most effectively heal now?" and that's SUCH a BLESSING I can't describe how big.
I am doing herbs to detox, Xango juice (which gave me more energy immediately...I actually woke up in the mornings sometimes!) Also I've started a program of treatment on the BEMER mat that seems to help my nervous system relax so I start smiling about life every time I lay down on the mat. I am so grateful to be healing and on the way up finally after 20 years of going downhill. I now see a future for myself rather than just struggling to make it through until the next day of struggle.
I'm happy to share details with anyone who is interested.
May we all breathe be filled with Light and move forward one step at a time.
Blessings, Healing
Posts: 1 | From California | Registered: Jan 2008
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
My 2nd success story...
After re-infection in May 2007 with babesia, bart again, borrelia (with arthritis again), ehrlichia, rickettsia and mycoplasma (according to my doctor), plus intestinal candida, that I believe came from the tick too(because I never had this problem before, and it went easily after treatment, so it was not chronic).
I fell sick in a matter of hours after infected tick bite, that stayed attached for about 9 hours. Every symptom came back, specially babesia symptoms, like a repetition of all I had before (light sensitivity, night sweats etc).
I tuned almost all my treatments with my own muscle tests and then went to my ART practioners to get some supportive things for my organs and homeopathics. But my treatment plan was built by myself at home, with Chinese herbs and other stuff. It's all here in lymenet.
For babesia, it's under "babesia alternative treatment". For bartonella, under "bartonella alternative herbs" or so. I took doxy for a few weeks, but it didn't do the whole job (my doctor gave it to me), I even didn't feel any positive effect from it either, but I was in constant herxes/ feeling bad the whole time after bite, so I can't say it helped/ didn't help for sure. Doxy tested good with ART, so I took it for 2 weeks.
Borrelia: the best thing for me are always Buhner's herbs in all possible combinations , tuned by muscle tests (amount).
Bart, babesia: I wrote here what worked for me (in Medical). Most important: cleansing with chlrorella, MSM, whatever helped (chitosan, zeolites..., rubbing Farah's oils or other oils). Herxes are awful.
The other treatments, all with herbs too, it worked if I tuned with my muscle tests. Eventually, I got symptomless by the end of October 07.
Funny that I thought I was attacking acute bart and borrelia and all the other stuff, but in the end, got rid of my chronic bartonella and chronic borrelia altogether!!
Got a small relapse sometime in November/ beginning of December after sleeping little for a month. Then after a few days of Buhn'ers herbs and other stuff, got rid again of the EM rash that reappeared on my chest.
I'm still fighting fungal infection in my skin, pre-lyme, but it's getting better (but it's so slow...). It's not too bad, but still not 100% gone as I wished.
I'm back to consuming wine socially, full of energy if I'm not herxing from fungi, back to life really, in all senses. My brain got no bad scars, I think. No lyme scar whatsoever (except for having lost two teeth). I'm not in a diet, but eat almost 100% healthy when I can.
I don't consider myself healthy, though, as I'm pretty sure if I get bitten again, I'll fall sick and will need lots of help to get out of trouble. But so far, I'm again symptomless since about December 2007. If I were REALLY healthy, I wouldn't fall so sick so fast like all my neighbors here that get constantly bitten by ticks.
I'm on astragalus, cats claw, sometimes I add other stuff; like now I'm on stephania, just in case. I never stop propolis, cod liver oil, chlrorella, I'm still on cardamon for cleaning fungal toxins, and eventually, milk thistle, or magnesium, or calcium, or trace minerals, depending on what tests good. But that's all.
My little daughter continues totally symptomless, she's learning her 4th language now by the age of 4 (so definitively no brain damage from lyme), very active and healthy. She's also on forever chlorella, CGF, flaxseed oil and propolis or bee products when they test.
Last year, the best tick protection stuff for us were homeopathic Borrelia nosodes LM4, we took a bit of it every week and didn't get bitten by infetected ticks again. Hopefully they'll still work this year and we won't fall sick again, me and my daughter. My husband is a tick repellent himself, never got bitten no matter what he does outdoors.
So my treatment was a combo of homeopathics, herbs, KMT, Buhner's herbs, Chinese herbs, lots of cleansing, phsycho kinesiology (that unblocked some stuff I would never believe it would), that's all, I think.
I also did lots of dental treatments, pulled out teeth that were testing bad in ART (ancient root canals), now I have golden partial protesis in the place of these teeth, I took amalgams off and did chelation for more than a year (soon, it'll be two years of metal detoxing). I'm fully convinced metals played a role on my body being weakened. As for my canal teeth pulled out, I was happy at least for one, as it was causing me dull pain for about a decade. NOw pain is zero.
Best tools for me: own muscle tests (I also posted about it here in lymenet) and ART (muscle tests done by my practioners).
Wishing you all good luck in finding treatments. Each person is so different, so anything that works is great if it makes you feel better! Selma
[ 29. January 2008, 11:22 AM: Message edited by: hardynaka ]
Posts: 1086 | From Switzerland | Registered: Oct 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
It's time to post my success story:
I'm finally well from lyme for the past three months, and well into recovery from the effects of lyme.
My recovery took nine months. They were some of the hardest months of my whole illness because I forced myself to stay in heavy herx mode most of that time.
I am still continuing to get well after three months without symptoms, and a very high stress load because my daughter was hospitalized for an accident.
I had borrelia, bartonella, babesia, and klebsiella pneumonia.
I have had tick born infections since I was about seven years old. I have to wonder if the case of "mumps with encephalitis" I had when I was seven was really from a tick bite.
My next door neighbor had bartonella when I was little. I started having bladder spasms and difficulty communicating verbally, and memory loss at that time.
The big bite happened when I was 22 (Over 20 years ago.) Two weeks after pulling off several ticks I started having mysterious bladder symptoms, chronic pain, and fatigue. They got worse and worse over the years.
I fought them off with diet, supplements and exercise. Symptoms rose and fell over the years with my stress level, causing them to be labeled as psychosomatic.
Both pregnancies were nightmare with being unable to sleep, get up, eat, think, etc. My second breast fed child reacted to my high cortisol levels by never sleeping, which kept the levels high until my adrenals crashed entirely. Then lyme took over and I was completely unable to function.
My naturopath put me on Cortef, which gave me enough ability back to pursue more answers. Then he got me a positive lyme test which put me on the road to recovery. For this I will be eternally grateful.
One year later, I have my life back. I think I will be able to get my health back to the point where I will feel energetic again. I'm still fighting off some candida, and may want to test for H. Pylori. I'm still stiff, but no more pain. I'd like to drop the spare 15 pounds, but I think that will take care of itself as I continue to heal.
I can think. What's more, I can feel. I am happy. I can experience something other than anguish, misery, dread, terror.
Life is good. I am playing with my kids, going skiing, running, socializing, working, etc. My house is clean, and my affairs are mostly in order. I'm even homeschooling my middle schooler, and loving it.
My protocol was based on a combination of ILADS, Buhner, and Dr. K. in WA. I am under-insured, have no area LLMD, and was unable to travel. I read two to three hours a day, and put it together myself, with the help of some local practitioners.
I wish you all the very best in health and in lifelong wellness and vitality. I am grateful to lymenet for the information, support, and encouragement that made my recovery possible. I couldn't have done it without you.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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This morning as I looked out the front window at our snow covered trees, my wife commented that March was "coming in like a lion", as we're expecting at least another foot of snow today.
I had forgotten...Its March 1st. Its been one year today since I was finally diagnosed and started treatment for Lyme disease.
I contemplated this thought...one year, how far we've come. Its a sort of aniversary.
I dont often take enjoyment in aniversaries, I prefer living day by day with my mind in the present.
As I reflected on the past year, whith its ups and downs, accomplishments and disapointments, I realized that with Lyme my day by day approach to life could be keeping me a bit down.
I feel my pain today, and have had many reminders already this morning that I'm still ill.
But as I reflected back to March 1st 2007, I thought wow, Im so much better now.
To fully apreciate the comparison one must understand, as most here do, where I was then...
_________________________________________________
A typical morning Last year...
I wake up, if I slept at all, lying in a puddle of sweat, sticky and cold. My entire body is in pain, muscles convulsing, head "bobbing", my abdomen is so sore.
Several areas of my body are swollen and ache, I cant bear to go through another day...can't this end....but somehow I sit up after much effort.
New pains begin with the movement of my body and the larger muscles start to cause me to sway from side to side in a twisting motion.
My head is being sqeezed as though in a vice and the ringing in my ears is so loud and unrelenting.
The children are awake and I begin to twitch and convulse with every noise and my head hurts everwhere now.
Confused, I wonder where I am, what am I doing, it hurts to think.
Eventually I figure out..again, that Im sitting on the edge of my bed and its time for the hardest task of my entire day...washing up and getting dressed.
I skip the shower because the 12 foot stumbling walk to the bathroom has exhausted me. My wife helps me dress, Im embarrased for a moment but then dont know where I am or what I'm doing again.
My wife makes a bed for me on the couch and helps me to the living room.
I lie there, wanting to die as the pain increases and my body convulses endlessly, never at rest. My legs feel like bugs are crawling inside..up and down, and every joint hurts.
Then the bone pains begin, as though some invisible force is stabbing me all over with a large blunt knife.
My wife makes me breakfast, something soft. Finally after several tries, my hand is able to clasp the large spoon.
I lower the spoon to my breakfast and as I lift my arm towards my mouth my hand begins to shake uncontrolably and the food scatters into the bowl and on the couch.
In pride, I dont ask to be fed, I just keep trying until finally I get a spoonful into my mouth.
I chew with difficulty as my stiff painful jaw tries to do its job. My face mucles hurt and are drooping.
Then I swallow, my tounge doesn't move the food to the back of my throat well and I try not to gag as I work to get the food into my throat.
Before the next bite, Im lost, why am I on the couch, whats in my hand,
Im scared and start to cry....so lost and in pain, when will it end?
As I write this tears are forming im my eyes, there was so much suffering then...Suffering my wife and five children had to witness every day as I wasted away.
I've come so far...yes Im still unable to work, I cant drive and from day to day I dont know what my body can handle...however....
This morning I awoke, stiff but with little pain today. I got up feeling fairly happy and walked about with no twisting, or falling over.
I watched it snow outside and appreciated the beauty of the drooping, snow covered trees out front.
I played with the dog for a bit. And thought about what Id do today. I took my meds and ate a good breakfast.
I logged on to the internet at all of 31.2 kb's ber second today....argg!
I checked my email and saw a PM from Lymenet, my eyes brightened, this is often the highlight of my day!
I read the message, it was a great start to a new day and wow! I can now read and write again!
I responded very thoughtfully, without confusion, to an email from my real estate agent.
Then, my wife an I kneeled together to pray about selling our house.
I walked around a bit to see how my balance and muscles were today because I wanted to give myself a one year aniversary present....work!
I was a little stiff and had some really small twitches and a headache, but decided I was OK to brave the snow.
I went outside, put a ladder up to th porch roof, climbed up onto the roof (dont tell Dr D...or my Mother ), then shoveled off about 2- 2.5 feet of snow.
Then, I climbed onto the house roof and shoveled off the entire north side! And, as the magician said as he pulled the table cloth out from under the settings, "The flowers are still standing!"
I took a cool shower and sat down to write on Lymnet. No spasms, Im tired but not bed ridden or even close to this....but Ill rest for the remainder of the day just to be sure, I can get some pretty nasty backlashes from phisical exertion.
So, One year in treatment, ingnoring the severe dips in the ride, Im so much better and feel (today ) as though I can handle seeing this thing through.
My wifes heart has slowed down, but I think she used her daily supply of energy up waiting for me to get off that roof!
BJK
"Love always hopes, always perseveres...Love never fails" "But now faith, hope, love, abide these three; but the greatest of these is love"
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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bettyg
Unregistered
posted
Joy and Ben,
thank you both for sharing your courageous lyme battles with us all!
Joy, so glad you are enjoying yourself with family and homeschooling as well.
Ben, you have come a LONG way since last year, and we look forward to more of your story this next year.
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I haven't posted here in a while, and some of you may recall that my daughter, now 19 was finally diagnosed with Lyme and babs about a year ago. Well, after a 3 month search and TOTALLY because of this website, we found a LLMD in NJ who has (knock wood) worked nothing short of a miracle.
In Jnauary, she started college...only 1 semester behind her peers. SOme of you may recall the battles I had with the high school to allow her to graduate and attend her senior prom. Those few shorty months ago, getting out of bed was a major accomplishment for her!!
Dear Lymenet community,
I want to thank you all from the bottom of my heart for all of your support, guidance and invaluable information. Most of all, for introducing me to the concept of a LLMD ... without which I shudder to think what her life would still be like today.
I Love you GUYS!!!!!!!!!!!!!!!!!!
Elle
Posts: 217 | From New Jersey | Registered: Apr 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Gang I had stopped posting (almost) because i had lost hope of a cure,and coulden't lead people on any more.
Then i gave myself 14 months benzathine Penicilan shots.For my weight 2.5 cc twice a week injected in my bottom by my self.
With a egg timer i first stuck my butt muscle,and slowly pressed down the plunger over a 3 minute time.
Not fun at all !! Sometimes i got a dull needle and the blood ran down my leg .
One time i hit that main nerve that passes across your butt and fell on the floor.while it felt like a thousand worms were under my skull in my brain. Syatic nerve.
I would not stop ,but at 14 months I got 3 dull needles in a row and i STOPPED.
I had had enuf!!!!
And it was enuf no more lyme stuff!!!
AAAAOOOOO!!!!!!
UPDATE The remission lasted 0ne year ,now I am looking for another antibiotic for long term use.
posted
I'm a success story, as is my son! I have been meaning to come on here and post this, as I looked to this board for support during our ordeal last year!
We live in rural Northeast NJ - tick capital of the world! Briefly, last May (2007) I began to have joint pain. I got more tired and lethargic and it all blew up around the fourth of July. I felt sick when I went to bed. An hour later I woke up shaking, dizzy, with sort of like tunnel vision - partial blacking out sort of thing. My pulse was rapid and I was nauseous but didn't throw up. I could not stop the feeling of shaking and these sort of muscles contractions where my muscles would tighten up every time I would try to rest. My husband took me to the emergency room. I was fed a bunch of lies by the ER doctor who examined me and clearly gave me the feeling that I was wasting his time. He told me that he'd do a lyme test and if it was positive I'd find out in a few days and he sent me home.
My elisa came back negative and I went to my regular MD who did a western blot. I continued to feel very very ill. I knew this was not a virus - I just absolutely 100 percent KNEW. Western blot came back neg. I told my MD that this had been going on for six weeks and could we just see if abx would clear it up? He refused, told me I was fine and healthy and that I'd get over it. Never mind that in all my 11 years of going to him, I had never once asked him for any sort of antibiotics or medication for me or any of my four children.
But I was helpless, so I believed him and continued to go downward. I had floaters in my vision, brain fog, leg pain, especially in my hips and one leg, and all the other classic lyme symptoms. My husband, who DID test positive for lyme, lied to our doctor and said that his pills fell in the toilet, and had it refilled for me. I took his amox and was better in a week. I had my life back! I finished the prescription and thought I was through with it all.
Two weeks later it crept back. This time I went to a doctor in town who a friend recommended. He listened to me - really listened, and said that the tests don't mean squat and began me on abx again because he believed it was lyme. Again, the amox wiped it out or so I thought.
Meanwhile, my son was diagnosed through a positive blot in September of that year (three months after my symptoms began). He is allergic to amox and developed an allergic reaction to the doxy within two weeks. Doctor began him on zithromax.
Meanwhile, out of desperation, I made a decision that completely changed the course of our fate. I took my son and myself to our chiropractor/nutritionist. I knew from a friend who had been seeing him for her migraines that he might be able to help us. At first I laughed at her and his testing methods, but when he cured her migraines, I knew I had to try something because this was clearly not working for us.
He does nutrition response testing. He tweaked our systems with supplements and a very strict sugar free/low glycemic diet. This man struggled with lyme himself for a long time and he adopted these testing methods for the body when he himself was healed this way by another practitioner. When I began seeing him, I also realized that I was still not better and I was given a round of doxy. My son also, had his symptoms return and he went on zith again for a month.
When my prescription ran out, I was still symptomatic but not as bad as before. Friends who had lyme encouraged me to call the doctor and see if he would give me more doxy. one friend even offered to get me doxy under the table if he wouldn't refill it. I struggled with asking for more meds or continuing with the diet and supplements and opted for the latter which did include a parasite removal program.
I am happy to say that within another couple of months I was symptom free and so is my son. I have not had any symptoms at all in five months. My son is no longer testing for bacteria in the nutritional response tests. Was it cheap? No. Was it easy? No- (try keeping an 8 year old away from sugar including fruit sugar!!) Was it worth it? YES!!
I have learned some thing in our journey: First, that according to our nutritionist/chiro who treated us, lyme and a parasite go hand in hand. That's one reason it won't leave completely - as the parasite dies, the bacteria is re-released. Secondly, the bacteria feeds on sugar! Cut the sugar, starve the bacteria. This also includes fruit sugar as well. Third, the immune system CAN be tweaked to fight this bug, but not alone (unless you're super human!) The antibiotics are necessary, at least from what I saw with us. Once our systems were functioning well enough, they were able to "take over" and get rid of the rest of it.
We may still have it lying dormant somewhere - many say that Lyme never really leaves, but we continue to stick to our diets and remain healthy.
I have seen many, many more benefits to the program we have been on including a child who had previously been the king of colds, sinus issues and viruses go through a winter of NOT ONE single cold! I have four children and he was the healthiest one all winter, which has never, ever happened before. I really cannot be more pleased with the way our bodies have responded to the supplements and diet.
I don't want to sound like an info-mercial here or some kind of health nut, and I dont' want this to sound like the "silver bullet" cure all. My nutritionist said during the first visit "I cannot cure your lyme. All I can do is to build your system to fight it." I have nothing to gain by sharing this except that I felt an obligation to do it and share our story. There are answers out there but you must seek them out and the medical community isn't going to help you do it.
If you are in northern NJ and are interested in my nutritionist or the doctor who I saw who gave me the antibiotics without a positive blot, I would be glad to share them. My email address is [email protected].
Posts: 6 | From Northwest NJ | Registered: Sep 2007
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I'm a frequent reader of this board, but haven't really posted much. I wanted to post my success story to share with everyone and let you know there's hope of getting better, it can happen.
I was diagnosed with Lyme in May 2007 after being sick with strange symptoms for about 6 months. Dizziness, jaw pain, confusion, brain fog, forgetfulness, arm pain, and extreme fatigue were my main symptoms. I never suspected Lyme and was surprised when my doctor, who ran a bunch of tests, told me I had it. (I was one of the lucky ones who test positive)
I grew up in Western PA and had heard about Lyme Disease, but the most I knew about it was something about a bulls-eye rash. I wasn't prepared for how sick I was about to get!
I'm so thankful to everyone on this board who provided lifesaving information for me!! You have all educated me about this disease, and about the nasty politics behind treatment. I've been able to pass along that knowledge to everyone I know (even when they don't ask!), and hopefully we can raise awareness about diagnosing and treating Lyme.
Back to my story - I was diagnosed in May 2007, started on oral antibiotics and sent to an Infectious Disease doc. I've heard the horror stories about them, but my doctor was amazing!!! He was knowledgeable about the disease and gave me IV Rocephin, then continued with the orals after, until I got better.
It took about a year, but I'm so happy to say that I've been symptom-free for 4 months now!! Completely healthy. I had gotten to the point where I didn't think this was a possibility - I thought that I would be sick forever.
Keep fighting! I know how horrible this disease is, and I want you to know there's a light at the end of the tunnel. Thank you to everyone on this board; you are all amazing people struggling with an awful disease. My prayers are with all of you to get better and to be able get back to a normal life. It can happen! Posts: 10 | From Northern Virginia | Registered: May 2007
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I am copying and pasting this from another thread I recently posted on. It fit into that thread and also "success stories." Congratulations to everyone who is able to post on this success threat, and let's keep working so more and more people get the opportunity.
I am a patient from CA who went to India for embryonic stem cells. I never post on these boards but I had heard about this thread and thought I'd share my story.
I am doing amazingly well. I've had chronic Lyme (Babesia and Bartonella) for 7+ years and my complications included neuropathy, arthritis, tremors and twitches, brain lesions, cardiac problems, chronic nausea, etc.
Post stem cells, all of my pain is gone, I am off all narcotic pain killers, all tremor medication, all heart medication, my brain lesions improved greatly (as measured by SPECT scans), my food allergies are gone, and the list goes on. I'm finally able to be off of antibiotics for the first time since my diagnosis.
I believe this is possible because of my previously aggressive antibiotic treatment and the new improvement of my immune system with the stem cells.
Before deciding to go to India, I failed all treatments that I tried (including almost 100 hyperbaric oxygen sessions). I feel that antibiotics did a good job to lessen the bacterial load, but my body was so deteriorated from the disease, something needed to repair it from that perspective. Embryonic stem cells did that for me. It is like I am a new person now.
Since I was the first patient to go through this, we don't know what the future will hold. But, so far, I've had a six month stretch of health and that's six months more than I ever thought I'd have again in my lifetime before I went to India.
The doctor's technology is unique as she is using ONE donated embryo to treat and endless number of patients. She is the only one that I'm aware of in the world using embryonic stem cells in human application (she just filed a patent). Her stem cells are 100% pure (meaning no chemical, animal feeder cells, etc.).
I can't say the treatment is right for everyone but it is thus far, the biggest blessing of my life. I hope this information has helped those who are interested understand it a little better.
It is not a cure for Lyme (stem cells won't kill bacteria) but I believe it will strengthen the immune system to better cope. My personal opinion is that much of a Lyme patient's pain, fatigue, etc. after they have had proper treatment, is not necessarily due to active bacteria but the devastation of what has happened in their bodies over the years (degeneration of nerves, muscle, etc.).
I'm always available for questions if anyone would like to know more. I'm going back to India in July for 3 weeks for a booster series (I was there for two months the first trip). I blog at www.healthcarehacks.com and update often for anyone who would like to follow.
i'm still in appeals with insurance on HBOT but i'll keep you posted. also going in for State Disability appeal 03Jul.. wish me luck!
getting well and staying well is MORE than a full-time job. i have tapped every financial resource i have and work hard at getting well 24/7. there are absolutely no short cuts w/ Lyme or TBI's.
all for now.. best wishes. -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
posted
There is most certainly hope. I lost my job, my friends, my marriage and my life due to 14 years of undiagnosed lyme. After my diagnosis in 2001, I was on IV antibiotics for 8 months and oral for quite a while. I am an ultrasound tech by trade and was unable to work at all for almost 3 years at the end.
Today I live at the beach, enjoy being single for the first time in 20 years, and work full time in my profession again. Am I 100%? No. But I am med free!! I was on fetenyl patches and oxy ir for break through pain for 8 years. I was diagnosed bi-polar due to this illness. i as on anti depressants and lithium just to name a few meds-they used to total over 15 of them. I take nothing stronger than an occasional advil and some melatonin for sleep. I still run tired at times and am sore after a 12 hour shift at work, but I am not flat on my back crying any more! ( and heck I am pushing 50 so aches and pains I guess come with the territory)
I have some residual brain farts, a lot of arthritis, some permanent damage to my liver but nothing I cant live with.
Keep up the good fight!!
Cathy
-------------------- There is light at the end of the tunnel. I went from existing to living again. You can too! Posts: 192 | From Myrtle Beach, SC | Registered: Mar 2004
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bettyg
Unregistered
posted
marie and cathy, WELL DONE TO YOU BOTH!!
HIP HIP HOORAY ....congrats big time!
marie, great you were able to accomplish what you sent out to do, and wonderful, informative lyme article !!
thanks to each of for posting! bettyg
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My 5 year old daughter is probably going to come off of mepron/zith after 18 months of treatment after her next visit to her LLMD.
Yesterday, as she was keeping me company for my IV infusion she was chattering away about how much she is looking forward to turning 6 and 7 and 8 and 9 and 10 and 11 and 12 and 13, etc.
WOW. This is MUSIC to my ears. She is looking forward to life. Two years ago at this time, she wanted to die. At three years old she wished she was dead and said so every day. Her life has been saved.
Here is the list of RESOLVED symptoms: fatigue, headaches, joint pain, stabbing eye pain, chest pain, abdominal pain after every meal, burning urination for every pee, major constipation, OCD behaviors, bi-polar, depression, suicidal thoughts, self-hatred, anorexia, night sweats, unexplained fevers.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Ive been wanting to write in here for so long but have been feeling cautious not wanting to jinx my recovery or make any bold statements about being well. So i gave it more time and feel like its time now to write:) I got lyme at age 19 but went undiagnosed for 10 years during which I made it through university by the skin of my teeth and then afterwards got extremely ill and spent several years bedbound, in extreme pain, with severe stomach issues, barely able to speak. I couldnt watch tv or read or do anything really as it all made the pain worse. the only thing i could do was listen to audiobooks, they helped alot. I finally got diagnosed with Lyme 2 years ago after seeing the discovery health episode on lyme and also reading a few different people's accounts on the internet of the unreliability of lyme testing. I had been tested twice with the basic elisa and had been negative both times. I was lucky to find an amazing lyme doc and for the first time with a doc to be in really good hands. my recovery was tough but i was so happy to finally know what was wrong with me. I felt some improvement initially and got big herx reactions so i felt i was on the right track. mostly on treatment i felt pretty crappy, i was able to be up and about around the house but was feeling pretty rough still most days. I did 9 months of IV treatment and that seemed to help clear the brain fog. then earlier this year i was treated again for Babesia and also started a supplement called D-Ribose both of which dramatically helped my energy levels and general feeling of wellbeing. I improved so much that by early summer i was able to return to work and ive been working now all summer, doing 40 hour weeks and feeling better and better over time. I still have along way to go, im working on my adrenals which have taken a beating due to the lyme and also have alot of stomach issues from all the antibiotics but i have a great naturopath who is also helping with those issues. Im on the buhner protocol now and do a small dose each day of colloidal silver recommended by my lyme doctor. I still have to be very careful not to overdo it and to take it fairly easy at the weekends. I still do my epsom salt/hydrogen peroxide baths and take all my suportive supplements so i have a really good support network. I couldnt have gotten through this illness without the love and support of my family and an amazing boyfriend who has stayed with my through the entire illness despite the fact the I had to move to live with my parents and he was far away in London, UK. So many times i hoped i would get better but with so many days of feeling awful during the recovery process i wondered was it ever going to happen. I would notice small improvements and wanted to believe that they meant something positive but thought maybe i was just imagining it. however they have continued to add up over time and i am getting better and better every day. I just wanted to write this for anyone out there who is in an earlier stage of recovery than i am, i know how rough it is and how hopeless it can make you feel trying to keep going in this ongoing battle but there is light at the end of the tunnel, you will get there. my body has been through so much but i am healing every day. I know it ll be a long process to be fully healthy so i will continue to keep working at it but i am leading a much much more normal life now. Im doing a very challenging job and planning a trip to my home country (Ireland) for a week in Oct. My boyfriend is moving to the US this year so we are finally going to be living together again. So many great things are happening so i try to remember that staying healthy depends on keeping a good work life balance, eating healthily and continuing with all the supportive supplements and therapies that have helped me to get well. Sometimes (or maybe alot of the time) it means learning to put yourself and your health first in order to get the rest you need and learning to say no to things that you do not have the energy for.
so to anyone out there who is feeling hopeless, its tough and horrible alot of the time but you will get there and it will be more than worth it when you do so hang in there, never give up!
lots of love to all my fellow lymies, keep on keepin on;)
Windmill
Posts: 45 | From PA | Registered: May 2008
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Wink9 Frequent Contributor Member # 4516 posted 02 May, 2006 07:00 PM
Thought I would come back and see if there was anything I could help with. My mother just started her treatment last week after constant nagging by me to stop accepting this as old age!
I had debilitating Neuro Lyme and Babs. Had it probably 5 years before diagnosis. Took 2.5 years of solid antibiotics. Had to quit my job, leave law school, withdraw from society, and really re-define life.
I couldn't walk and I couldn't make out sentences during the first few months of herxes, but I could stay on a horse, which was a miracle. I was so Type A, to not have had this outlet, even just sitting there walking around like a snail, would have destroyed me. I also had a horse survive Lyme who I looked to for inspiration, as well as the best family and friends ever. OK, who am I kidding, not many people understood, but the ones that stood by me mean everything to me now.
During Flagyl I was a suicidal maniac. I would scream, cry, wrench, hallucinate . . . I had to be supervised by hubby or Mom. Lexapro helped some. It was like demons were scratching through my pores. All I can do is shake my head to think of it now.
Saving grace came when I finally pushed for an IV of Rocephin. Took it for two months after 2 years of pills. I am firmly convinced if I hadn't waited that long, the strength of the IV meds would have killed me. I had to wait that long unfortunately to kill off enough bugs as to not overload me.
I am now 80% healthy after coming out of treatment last August. There are still days where I really lag. I think of it like people with Epstein Barr. It is a hinderance, but I have my life back. I can work all day long now, have intelligent conversations, handle driving, movement, most sounds, light. My muscles hurt now like a 50 year old instead of a 90 year old! (I am 30) It is all manageable. Life is worth living again. I have joy and the ability to appreciate it.
I always told my family if it wasn't for them, I would never have fought through the disease like I did, not just for me. But now that I am well, I sure am glad I did fight, for ME.
I will try and check back if there is anything I can help with.
Wink9 Frequent Contributor Member # 4516 posted 18 August, 2008 07:28 AM
Hi friends, Just wanted to check back in and lend some hope to anyone having a particularly rough day.
It is now 8/08 and I am still in complete remission. I feel great and I even feel "normal" once again. I returned to my full time job as a horse trainer and could work regular days until about 6 weeks ago when . . . .
I became pregnant with our first child!
There is hope. I know you feel like you are in hell, and frankly, you are. There is no minimizing it. I make no qualms about the fact that it almost killed me to anyone that will listen. But it is able to be beaten!
I always just thought I was a regular person until I saw how strong I became living through Lyme. You are all JUST AS AMAZING. Keep your chin up. It is possible and so worth it.
I just wanted to add my own post to this topic. I had Lyme Disease for 7 years before I got a clear diagnosis. I have now completed 14 months of antibiotics, with extensive naturopathic support and low-dose heparin therapy. So far, I have gone from barely able to stand up to walking at least a mile a day and learning to swing dance in the evenings!
I just started a blog a few weeks ago. I explain what I've been through, what worked for me and what didn't, and how I've kept my spirits up this whole time.
If you want more details on my story, would like some inspiration, or ideas for detoxing and other alternative therapies, please read my blog at lymestory.com
posted
I Think I Kicked It's Butt. Mine like all the LYME stories is quite long and complicated. I think i cured myself quickly with no help from Doc. My family Doc laughed at me at first then she changed her tune later and clinically diagnosed me with Lyme.She said if i need help get into her office pronto but i was doing just fine on my own protocol.She even said Samento is a smart choice so i decided to give it a shot on my own. I am going to do this in point form to make it easier for people to understand. July/07 Terrible itchy rash from neck to anus,no bullseye. Night sweats,chills,general malise, 1 year duration. May/08 Sudden onset arthritis, Doc said Rheumatoid with deformation. The test results from Xrays and R/A factor were "0 " arthritis. Other typical symptoms were severe wandering joint pain and a creaking cracking neck.My Lyme gradually entered into very painful neuropathy in my arms and my hands sometimes my legs.I also experienced wierd crawling feelings inside my ears. Very loud hisssing ears for months on end.Sore teeth and sore eyes were daily issues and i hated every minute of this garbage! On July 10/08 i Started Samento and built up quickly to 20 drops/day and herxed like hell so i cut back to 15. added Emu oil internally. added Curcumin and garlic. added P73 oil of Oregano. added olive leaf extract. added tons of red wine. added alpha lipoic acid (super for neuropathy) added amethyst biomat OMG! saved my butt..slept every night almost all night. added homemade highbush cranberry juice(no additives) it is now Oct 2nd. I am free! I am never going to stop Samento or red wine or cranberry juice or my biomat.Those are good things and i enjoy taking them.The Samento took my arthritis away in 3 weeks flat.The knobs and all.I realize i was not a long term case But my wife (nurse) and i did a accurate diagnosis and took the bull by the horns and got aggressive.I firmly believe that abx's are useless against this disease but that my opinion.If anyone requires more detail PM me! Point to ponder. I didn't get sick until after i quit drinking my own organic red wine.I have been back on it now for over 2 mths and feel wonderful. I feel my liver had no problem with the wine but i was only a true Lyme case for 14 months. I let resveratrol do its work and the alcohol really took the neuropathy pain away.Since the wine was organic with no metabisulphites a hangover was non existent.Bear in mind i was not near as sick as a lot of other members by reading their posts but my protocol worked as long as you catch the disease soon enough.I am sure now Lyme is in remission and most likely in cyst form i am looking for advice on what i should do next? I am thinking that if i stay on Samento and other supplements for the rest of my life i could be one happy camper?
[ 03. October 2008, 07:56 AM: Message edited by: kickatick ]
Posts: 12 | From New Brunswick, Canada | Registered: Sep 2008
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1 yr of doxycycline / Flagyl 3 months of IV rocephin 3 years of Bicillin shots
99% of all of my symptoms cleared up, except numbness in the face and insomnia, but I now lead a normal life and have had no relapses .
A little background:
I was sick for six months and had many hospital visits before I was diagnosed, so I had serious neurological problems including insomnia, memory loss, facial numbness, vertigo, etc. including an inflamed heart and many other issues. I was 22 years old when I was bitten and their was no rash. My roommate did get bitten as well and he did have a rash, that is the ONLY reason I new to ask for a lyme test. I was lucky, because there was no rash or visible tick.
I first went to a general practitioner that put me on low dose doxycycline after I tested positive for lyme two times. He stopped treating me and said he didn't know why the doxy wasn't working. I then took it upon myself to find a lyme specialist who put me on high dose doxy, penecillin, and flagyl. That helped a little bit, but wasn't a cure. I then looked for a doctor that would prescribe IV antibiotics and thankfully found an infectious disease specialist that did prescribe them for me. Because I tested positive so many times I had no problem getting the IV antibiotics. That helped a little bit as well, and finally I went to a lyme specialist who is a neurologist and they put me on bicillin shots twice a week. Over a 3 year period this helped the most, but it was a very long road. My suggestion: excercise when you can and stay positive even though it is hard.
[ 03. October 2008, 04:31 PM: Message edited by: florida30 ]
Posts: 1 | From Dallas, TX | Registered: Oct 2008
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posted
I will cross post to success stories, but for those here who need good news:
Our dd was discharged as a patient from the Best Pediatoric Lyme Doc!!! She was in tx for 21 months. He dx her clinically with lyme and babesia (confirmed by labs). She was on zithromax and mepron (yuck). We didn't do much else other than good diet.
ALL SYMPTOMS are gone. She had joint pain, overwhelming fatigue, major depression, bipolar, skin light and sound sensitivity, stabbing eye pain, abdominal pain, chest pain, shortness of breath, disturbed sleep, burning urination, major constipation. We were all living in H3ll, if you know what I mean.
She had been treated with 6 weeks amox post tick bite but the co-infection prevented her from kicking it.
We know we're not out of the woods. She could relapse or be bit again, but she's SO MUCH BETTER. Her life has literally been saved. Thank you so much to lymenet for helping us every step of the way.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
Monica Frequent Contributor (1K+ posts) Member # 224 14 March, 2006 07:01 AM
Here is a Lyme success story as reported to me via e-mail by a friend. The victim lives in Western NJ.
Had a nice conversation tonight with the owner of an Italian Restaurant.
I have known her for about 25 years. About 10 years ago, she suffered very much from Lyme disease. I told her about you and the problems you are faced with daily.
She said she had 6 terrible years, taking up to 17 pills daily, mostly antibiotics, for several of those years. For the past 3 or 4 years, I know she has been feeling wonderful and does just about anything she wants to do, including taking care of her new grand daughter.
She told me to tell you to keep working hard at getting better because you will get better. She said that when she was first aware of what her problem was, she was in "stage 3". I told her you were fighting.
I also mentioned work and she said "work is impossible". I know her husband and family (two boys) helped her a lot.
posted
chlorophyll Junior Member Member # 966 posted 28 May, 2008 12:34 AM
This article about chronic Lyme is in June's issue of Self magazine. I was fairly impressed with the way they covered the topic, especially for mainstream media. And, it's a success story - something we all like to hear!!!
posted
DD was taken off of zith/mepron in November after 2 years tx.
She's better, she's great. NO PAIN. NO Psych issues. No irregular heartbeat, fatigue, etc.
She's six, in Kindergarten and doing great!!!!!
Just want to let people know so they will see there is hope.
As for mom (me) I'm still on ceftin/zith, but the good news is that I'm working full time- WOW! That's after being unable to work, drive or parent for most of the prior year.
There is a life beyond treatment!!! Stick with it folks.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi everyone,
I have only been treating for 8 weeks now.
I couldn't believe it when I woke up this morning and realized that I had actually slept for 7 straight hours without waking up!!!
2 weeks ago I also had 2 nights where I slept for 6 hours straight.
I have not slept for 21 years, so this seemed like a miracle to me.
Normally I was lucky to get 1-5 hours of very broken sleep.
My insomnia was really bad the last couple years....couldn't get to sleep and if I finally did, I couldn't stay asleep.
The meds/supps I am taking that are for sleep right now are:
(update 4/10/09: I have increased the sublingual melatonin to 10 mg at 10 pm)
I also have been trying to dim the lights and get off the computer by 9:30 pm to let my mind rest and hopefully help melatonin production.....I'm a little late tonight though.
I am hoping that this is my first sign of improvement.
note: check with your LLMD for interactions between meds and supplements....for instance a person taking a SSRI or MAOI antidepressant should not take these supplements.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
After 15 years of being undiagnosed, i am currently in my third month of treatment (with PICC line and oral abx).
I must say that up until a few days ago, I felt that there was not much hope for getting back any 'normalcy' in my life.
However, after my first dose of IV Levaquin more than kicked my a$$ on saturday, i woke up the next day feeling good. and the next day and the next!
I'm starting to fade back to all of my symptoms, but I was able to grasp the true possibility of me getting better.
Also, last semester, I was having a very difficult time with school. In particular, calculus.
As my lyme had progressed, the subject that came so easy to me had become the most difficult.
I would like to say that I am retaking calculus this semester and just received a 100% on my last test. In fact, I have gotten two 96%s and one 95%.
I can feel my brain coming back! It's a wonderful thing and I had been so skeptical.
So know that there IS a future. It feels so good to believe it!!!
xoxo ~Green~
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi ThatColorGreen,
I am really happy for you, that you now can really feel the hope that you needed!
Congrats and I hope you just keep improving!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
tincup's post
little girl ... rocky mountain spotted fever, etc. MISDIAGNOSED OVER & OVER ...
lengthy & lymenet members helped mom get dr. to dr. jones, conn.!!!
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I don't want to jinx myself but did want to post something that will hopefully give those out there struggling some optimism.
I am about 75% better. I was very ill, had Lyme likely since teenage years, rebitten in 1996. Sick since 2005, pregnancy made it all come out. Heavily neuro.
I attribute this to: 1) three different LLMDs and knowing when to switch 2) Doing IV. 3) myself/following my instinct 4) really, really good probiotics (medical grade) from the beginning - something I learned here on Lymenet! 5) A mood stabilizer/anti-seizure med 6) Friends I've made here and on other boards, and all the ideas we've collectively come up with as regards treatment.
I'm not out of the woods by any means, I still have to work on the illness and do clean-up with perhaps mold and metals. But I am enjoying life again and Lyme is not always the first thing I think about every morning anymore.
There's hope!
Posts: 3528 | From US | Registered: Apr 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Posting links to these stories here, since I haven't seen them copied here so far. I hope that's ok with everyone.
New members need to have an easy place to find these stories so they can get a sense that people are getting sick, coming here, getting treatment, getting better, and moving on. Otherwise, they only see a slice of the whole picture.
It's been a while since I posted an update. I am happy to report significant improvements and I have been symptom free much of this year including a 3 month break from Abx.
In June I began (hopefully) my final 90 day round of Abx (Suprax, Zith and Flagyl). I'm herxing as expected and I feel like poop.. amazing how quickly I forgot what it felt like!
I had 2 major setbacks this year (unrelated to Lyme). MRI detected 3 bulging discs (lumbar spine) in JAN, followed by right leg issues in MAR.
Things have since improved thanks to extensive therapy (Spinal Decompression, ART, Massage, Chiro, Acupuncture).
For the record, here's a brief recap of my history: minor symptoms began Nov05 after fracturing my foot. My condition worsened Oct06 following major shoulder surgery.
Chronically fatigue and bedridden by Apr07. Self-diagnosed w/ Borrelia in Mar07... denied clinical Dx and treatment by numerous Drs for several months.
Sought LLMD in Jul07 and began treatment in Sep07.
Recent testing (Mar09) supports how I am feeling these days. I hope you all are having similar experiences or at least realize your potential and the possibilities of recovery.
i am by no means cured but i definitely have my illness under control and i'm headed in the right direction.
C3a Complement Protein: 137... (was 221 in May08). Labcorp Test #840702
C4a Level: 1759... (was 4034 in May08). Labcorp Test #857334
CD-57: 65... (was 32 in Jun07). Labcorp Test #505026
Mercury Blood: None detected... (was 5.2 in Dec07). Labcorp Test #085324
Vitamin D (25-Hydroxy): 45.2... (was 31.1 in May08). Labcorp Test #081950
I will share more of my thoughts concerning Lyme care and treatment based on my experiences in the coming days. Hopefully someone will benefit from it... stay tuned. -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
I just wanted to give everyone a little hope today. I haven't posted here in a long time, but I wanted to let everyone know that getting WELL is very possible.
I had misdiagnosed lyme, babesia, bartonell and ehrlichia for over five years.
After I had my son, I started to really go down hill with memory loss, derealization and a lot of brain issues.
I have now been in treatment for lyme and coinfections for one year and four months and I am almost 100%.
The only time I have symptoms at all is when my lyme doctor changes my meds and I herx. However, even now, my herxes aren't severe like they were for many months.
In fact, my lyme doctor tells me that after just a few more months of treating the coinfections very hard, I can get pregnant.
It's been a really long road and it's not over yet, but I'm living a really nice life now and I feel better than I have in years! You can to just keep at it and try to stay posistive!
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
A Champion Overcomes-Attitude is EVERYTHING
Year 1) I woke up paralyzed 7 years ago this Sept. Was then diagnosed with end of Life (suspected MS/ALS) Stage of unknown etiology.
Year 2) Given a death sentence the MD's told my wife to move back home for familial support the following September we did.
Year 3) On our 15th Anniversary (9/9/1988) we found a lump that turned out to be 3rd stage breast cancer. Two months later we found out our children had the same infection of the brain that I had. A small car given to us by a Business partner exposes us to Carbon Monoxide thru a broken manifold and rusted out floor boards.
Year 4) We find out that the house we bought for me to die in was loaded with mold. A car our friend gave us title to exposes us to Noxious Carbon-Monoxide and burning transmission fluid caused by a leaky exhaust pipe and leaking transmission. Kris completes her Allopathic Cancer regimen and starts a Natural path to permanent healing.
Year 5) We file bankruptcy and leave all of our worldly goods behind us as we give the mold infested house and furniture over to the bank. The car we purchased (with a loan from my Father fills with mold from a leak in the front windshield/dash area)
Year 6) Due to a Mishap caused by the exiting Occupants we have to cancel a lease and are left homeless for 2 months (I pawn my wife's wedding ring to pay the deposit on a Duplex) Two months later a friend offers a business Opportunity to me....I pawn MY wedding ring...this time to pay a $175 licensing fee. 9 weeks later I get my first paycheck ...on the same day that we filed Bankruptcy 2 years beforehand.
Year 7) Three years after bankruptcy, 18 months after being homeless and 12 months after earning my first paycheck with this company...I earn $22,600 in one month.
Earlier in the year, despite tremendous physical discomfort from the infection that has ravaged his body for over 30 years...Kent fulfills a promise he made to others that suffered from the same affliction over 6 years before...that he would return to the world of sports once again and compete at the National level. In April he starts a regimen to help him regain his strength by July to compete again. At the regional Track and Field Event despite suffering from cramps, diarrhea and heat exhaustion in the 105 Degree Heat Index he qualifies to compete at the National Level in Long Jump and the 4 x100 meter Relay. Injured he withdraws from the National Games held in Colorado Springs, CO.
Kent is flown throughout the U.S. as a Featured Speaker at several Business Seminars.....
Year 8) Coming this October My Family and I will be featured on a book titled, "You Will Overcome" 52 Inspirational Stories of People Overcoming Great Challenges. Our Chapter is Entitled, "With This, I Can NOT Fail!" www.IcanNotFail.org
This NOT a Solicitation.....just one families story...that stills goes on.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Woman fights for Lyme treatment after months of diagnosis denial
The Sacramento Bee
September 1, 2009 E-mail Print Share Text size
SACRAMENTO, Calif. - She wouldn't use the wheelchair. Anything but that. The bulky walker was bad enough, but at least she could retain a semblance of her former mobility.
Yeah, Pamela O'Kane was determined -- stubbornly so -- to get back to normal life after another stay at the hospital.
This one lasted 10 days in the late summer of 2007, and doctors still had no definitive diagnosis to explain and treat the uncontrolled, episodic spasms in her legs and arms, the partial facial paralysis, the weakening of her reflexes and the troubling 35-pound weight loss.
O'Kane, a 48-year-old instructor at California State University, Sacramento, suspected that she had somehow contracted Lyme disease -- a potentially debilitating infection transmitted by ticks -- at some point in 2006. All the symptoms were there, and her Lyme disease specialist detected two co-infections that usually accompany the disease. But the test for Lyme disease came back negative three times.
Which frustrated O'Kane to no end. Here was this perfectly healthy woman -- a national-qualifying, age-group triathlete, no less -- rendered nearly an invalid who could barely stand up to conduct her teacher education classes without succumbing to fatigue, breathing problems and spasms.
Specialists had tested her for a medical dictionary's worth of maladies. The spinal tap for Lou Gehrig's disease came back negative, as did the scan for multiple sclerosis. She saw her gynecologist for a cervical cancer test, a pulmonary specialist for a lung cancer screening, neurologists for all types of central nervous system disorders.
Negative, negative, negative.
One doctor even suggested antidepressants, thinking O'Kane was suffering from psychological problems. O'Kane, however, knew the problem was in her central nervous system, not "all in my head."
Still, just before this latest hospital discharge, the neurologist at the hospital told O'Kane's relatives that her condition would only worsen, and that a wheelchair was advisable.
"They told me I was going to be disabled," O'Kane recalls. "They said it would get progressively worse."
O'Kane had other ideas. During the hospital stay, she had read a story in The (Sacramento, Calif.) Bee newspaper about women climbing Half Dome, that 2,000-foot-high granite monolith in Yosemite, and she vowed to do it herself within a year.
A year later, she and her sister, Denise Wilbur DeTrano, had reached the goal, arms raised atop the granite slab. Just for good measure, the pair ascended Half Dome again this summer.
But O'Kane says it took more than dedication and grit to get her body back close to pre-illness shape.
Rather, she had to put aside her skepticism and commit fully to a controversial Lyme disease treatment plan that she had hesitated to enter because she technically had never been diagnosed.
It involved long-term antibiotic treatment -- open-ended, depending on her response to it -- through an IV line implanted in her left arm. This goes against standard treatment recommended by three medical organizations: the Infectious Disease Society of America, the Centers for Disease Control and Prevention, and the American Academy of Neurology. In a 2007 study published in the journal Neurology, researchers found that for patients with neuroborreliosis (Lyme disease that affects the nervous system), the treatment was effective only during a 14- to 28-day window. Long-term use of antibiotics has been linked to side effects such as blood clots, bloodstream infections and diarrhea.
Yet many Lyme patients (and those, like O'Kane, who exhibited symptoms but were not officially diagnosed) report that a six- to eight-month regimen of antibiotics helped them. And San Francisco physician Raphael Stricker, who has treated 1,800 Lyme disease patients, says he's seen patients cured by long-term antibiotic use.
"For patients with persistent symptoms based on persistent infection, unless they're treated long-term with antibiotics, they aren't going to get better," says Stricker, who did not treat O'Kane. "There is a lot of evidence from animal and human studies that there is persistence in infection (with Lyme), and the only way to get rid of it is long-term antibiotics."
O'Kane knew that prolonged use of antibiotics could be harmful, but she also knew that it was effective.
She underwent six months of treatment from January to July 2007. While taking the drug, she still had hand and facial tremors and had yet to gain back weight, but the severity was greatly diminished, and O'Kane could go about teaching and participating in triathlons.
What gnawed at her, though, was the fact that she'd never been diagnosed with Lyme. All those negative tests couldn't be wrong, could they?
That summer, she says, "I decided to take myself off it and detox. I wanted to try this on my own. Everyone told me, no, no, no. But I said, 'This is it.' "
About two weeks off the medication, she called her sister.
"She said that her feet were turning in -- foot drop like people with cerebral palsy have," DeTrano recalls. "Fifteen minutes later, she calls me and says, 'I can't walk.' I had to go and carry her into the ER."
After that prolonged hospital stay, the one in which neurologists said she might be permanently disabled, O'Kane was eager to go back on antibiotics. She recalls being in the Lyme specialist's office, and her feet were spastically moving so much "it was like I was tap-dancing on the floor."
Even with just the initial dose of antibiotics coursing through her system, O'Kane said she felt better. She tossed aside the walker and never used it again. Not long thereafter, she was running, swimming and biking.
She regained her strength and stamina, if not all the weight she lost. Still, through rehab with a personal trainer that includes weight training, O'Kane has 12 pounds of muscle mass, according to her latest hydrostatic weight test.
Ironically, after feeling better, O'Kane finally tested positive for Lyme in January 2008.
"She's a classic case," Stricker says. "The commercial testing for Lyme is, in a word, terrible. They miss more than half the cases. Compare that to the sensitivity of AIDS testing, which is 99.5 percent [accurate]. The tendency is for doctors to say, 'I guess you don't have Lyme disease. It must be something else.' "
O'Kane just seems happy to have finally cleared the major health hurdle. Now back to running seven-minute miles and churning on the bike, O'Kane believes exercise has hastened her recovery. But she admits that she still has problems, episodic tremors mostly.
"It's like somebody who suffers a stroke and recovers, but only to a certain point," she says.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
SHORT VERSION
OCTOBER 2003: Hiking at national park with family. Later, found tick (no big deal, pulled it off) BIG MISTAKE!
Text book Lyme symptoms. "Flu", aches, pains, sick in bed, exhausted, couldn't go to work. Got "better". Returned to work.
TWO WEEKS LATER: Developed large bulls-eye rash. Freaked out. Never saw anything like that in my life. My husband went online and found that exact rash--Lyme Disease! Neither of us had ever heard of Lyme Disease.
SAW DOCTOR in our small town (who I would have never gone to normally) but I was so freaked. Dr. said "No Lyme Disease in OKLA but, just in case, put me on ten days of Doxy."
ENDED UP IN ER five days after starting Doxy became "deathly" ill. Body in extreme pain. Terrible headache. Bulls-eye rash almost gone; Lab tests normal.
Told by ER doctor to follow up with a doctor to be tested for MS and/or Lupus (I did not follow up).
Didn't know it then, but that was a HERX that landed me in ER.
CHRISTMAS 2003 felt "better". I have a high threshold for pain, usually could go to work. However, when exhausted, could not get out of bed. Stayed home.
APRIL-SEPTEMBER 2004: "Fear" set in. Still could go to work, if not exhausted.
OCTOBER-NOVEMBER 2004: Brain fog. Losing my mind. Missed more work. More days in bed.
DECEMBER 2004: Going crazy. Milk to washing machine. Laundry to fridge. Etc. Driving and couldn't find cruise control on car we'd had for SIX years--THAT WAS IT!
When I arrived home my husband looked up Lyme Disease Symptoms. THERE I WAS! Had most of the symptoms. Scheduled appt. with Dr. C.
FEBRUARY 2005: (1 year and 4 months since tick bite) Finally my appt. with Dr. C in MO.
Followed faithfully one Abx after another per protocol. If herxed too bad, reduced. Built back up. When Abx no longer helping (no herxing) moved on to next Abx.
APRIL 2006 Went off Abx. Symptoms gone, except from time to time tired and my body weak--no more hiking, jogging.
Accepted that my life would not be the life I had before Lyme.
"REMISSION" APRIL 2006-MARCH 2008 Two years
APRIL-JULY 2008 Ignored Lyme signs. Tired. Brain fog, Forgetful, etc.
Finally set up appt with Dr. W In TX (closer to Oklahoma).
AUGUST 2008 - MARCH 2009 Seven months on Abx. Protocol different. High Abx doses, just hang in there, but if can't, then cut back. Hung in there as best as I could--one Abx after another.
Received encouraging PM from TF (BIG THANK YOU) regarding exercising per Dr. B's protocol. After beginning Abx this time, I started rubber band muscle strength exercises--30 SECONDS! No, I did not feel like it--but again and again I would read that PM. TF shared, "I have the same life I had before Lyme. I don't have an energy problem. I take a brisk 2-mile walk with some jogging (30 minutes) daily for my exercise program, plus I lift weights...Now, I can do what I want."
I started muscle strengthening slowly. Now I can do 45 minutes of muscle strengthening.
Dr. B says, "If you don't exercise you will not get better." WOW!
APRIL 2009: 5 1/2 years after tick bite, and one relapse later, I have my life back.
Since starting muscle strengthening exercises, I have been able to add walking, some jogging and cycling. Feeling better keeps me motivated to continue. One day I'd like to run in a Marathon (even if it's "just" five miles).
One other thing I'd like to share--REST/SLEEP. It is so important to rest our body. We don't have to let "Lyme" put us to bed, we can choose to lay down so our body can heal. When I'm tired, I rest. I enjoy it and don't feel guilty.
I haven't posted much in the past. I have read posts and have been encouraged. It is time--PAST TIME--for me to give back.
Lyme is not the end. There is hope. Do not give up.
SEPTEMBER 19, 2009 Attitude is so important (as I shared on a post today).
I do not know the future, but this I am sure of--I am not a Lyme Victim. I am a Lyme Survivor!
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I figured I would update my post that at one time or another I had on here.
- I first began getting sick in 2001, but it wasn't with anything I even remotely thought was lyme. It started in May, I got the flu. In June,
I lost my hearing due to a severe ear infection. In July, I got laryngitis, etc. It seemed like every month from May- September of 2001, I was getting sick.
And every month, I would get an antibiotic, take it and be better for another 3 to 4 weeks.
In September of 2001 though, is when lyme dropped the bomb on me. I was sitting at work when I got a sudden intense vertigo and completely lost my sight. My forehead started hurting me in the most intense way.
My then fiance came and got me and took me to the ER. They thought I had a "thunderclap" headache and was checking me for stroke or a blood clot, etc.
The Ct. scan was fine, but I wasn't. Though I could see, I was still having vertigo and my head was beyond killing me. I went home where I began running a very high fever.
From there on out, I had countless Er trips, tons of visits to my PCP and other specialists and tons of diagnoses- all of which were wrong.
by the time I was finally diagnosed it was mid 2002 and I was experiencing temp paralysis episodes, and a HOST of other severe neuro symptoms from head pressure to spurting nose bleeds, to constant 24/7 migraines that were insanely severe to constant 24.7 vertigo. I used to feel like I was walking on bubbles. Everything hurt. I had in total well over 75 symptoms.
The way I got diagnosed was a girlfriend of mine from college called me and said "I think you have lyme disease". I recalled that everytime I searched out my symptoms ( sometimes by holding onto my desk so I wouldnt fall over),
that it would keep bringing up lyme. I called my local lyme support group and they helped me contact a doctor.
I was blood and PCR positive and urine positive for lyme. Within just two short weeks of amoxy at 3 to 4 mg A DAY, my severe vertigo and migraines were gone and never returned. ( albeit I still do suffer a severe migraine from time to time).
I was 26 years old.
I am now 33. I have done TONS of treatments and tons of antibiotics and a wealth of alternative treatments from muscle testing to the rife machine to saunas, etc. I believe everything together is what helped me.
I still DO have symptoms ( only three) that require me to take antibiotics from time to time. But for the most part, I am living a pretty full and normal life again and have been for quite some time.
I decided to buckle back down and get rid of what is left. It was discovered two years ago the reason I wasnt fully better was because I didn't have the babesia or bartonella they suspected, but rather the southern strain of erlichia that no one even thought to test me for. I am having a hard time getting rid of it ( still positive), but I am still trying.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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This time last year, I'd been on antibiotics for just about a year. I was sleeping around 16 hours a day, and had such bad pain in my legs I could hardly walk. I thought I'd never feel normal, or healthy, ever again.
But last week, I ran 10 miles.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Success Stories,
For those of you who got well got well can you go more into pain. Did any of you have terrible arm or leg pain that seemed to last for ever and get worse?
How about exercise? Mostly weights? Any cardio? Walking? I was feeling better last winter with treatment and was lifting weights and lifting heavy as I used to body build.
I was feeling good, went snowboarding...life was looking good. Then the rug came out from under me. They found after 5 month I did not get Babs out of me. She feels after 5 months it supressed it enough to give me quite a few months of reliefe and also was in the middle of Lyme and Bart treatment....but still had a positive Babs test.
I used to lift weights now a push up is hellish...pain in shoulders, elbows,etc My shoulder feels so unstable it feels like it could fall out.
A year later I am back on Babs treatment going on three months and still no better. Pain is horrible and is getting worse. I want to die. Anyone go through something similar?
Finally, how about details on your diet? I eat very little meat since cooked meat is essentially a carsinogen and that scares me and my digestion is not as good when I eat meat. I know some here ate nothing but meat and veggies while other ate almost vegetarian but mostly whole intact grains, whole foods, etc and no simple carbs or refined foods. That is kind of my diet.
Just looking for details on these issues to hopefully give me some hope from those who have gone before me. Thanks.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I have treated Lyme with antibiotics and Buhner herbs, and had gone into a fairly sustained remission, and later had a reinfection (I'm pretty sure). It seems to be babesia and things are much more difficult this time around.
After a year+ of fighting the babesia, it seems to be gone.
Unlike the first time I treated "only" Lyme, which was a relatively easy experience, my theme this year seemed to be "this is really hard", "I wish I could afford tests to guide what I'm doing", "I can't afford anything" and "I'll do anything to get medication" and "throw the kitchen sink at it". My doctor had other ideas on how to deal with it but was willing to defer to my research. We did a lot of trial and error. I learned a lot about ordering medication overseas. I tried to get plant researcher friends in Africa to look for cryptolepsis for me (no luck on that). I seem to have a stomach of iron and a liver of iron, and tolerated this heavy drug use protocol. I am now somewhat better, though I still have Lyme symptoms that I think are unrelated to the babesia.
To 'afford' this stuff, I got medication from a couple of other patients on the internet, I bought generic Indian and Barbados-made medication from overseas pharmacies, and I didn't take some things (like Malarone instead of Mepron) that I would have preferred because I couldn't afford it and couldn't get it for free. I used many drugs simultaneously.
the progression went like this: May 2007: tick bite with some kind of obvious re-infection (I already had Lyme) 2 weeks of immediate amoxycillin/probenecid, symptoms went away 'mostly' I put myself on a couple of months of doxycycline relapsed about a month and a half after the bite got sicker and sicker and noticed that I had anorexia all of a sudden, along with night sweats and other issues got air hunger from hell about 2 1/2 months after the bite got on about 2 months of Biaxin and Buhner herbs didn't get any better started Mepron + Biaxin, kept up to that for about 8 months (I didn't take proper doses since I know I didn't have 6 months of Mepron bottles) started cryptolepsis and kept that up for about 8 months added alinia about 7 months in, didn't see a drastic effect added artemesinin, pulsed when I remembered to take breaks did about 3 3-week courses of alinia with breaks in between did Chinese herbal medicine from an herbalist in Chinatown (ie I have no idea what's in it, though he told me that some of the herbs were useful for malaria) did some acupuncture at various times when I could afford it air hunger finally started to subside 14 months after the bite (the other symptoms, sweats, dizziness, headaches, and anorexia, had subsided much earlier) Ran out of Mepron about 8 months into babesia treatment, have continued on Biaxin + Alinia + artemesinin + cryptolepsis for a month, followed by Rifampin + Bactrim + other rotated antibiotics and courses of Alinia and/or artemesinin. I've been on Bactrim continuously since I ran out of Mepron, it's one of the antibiotics that may be effective on both babesia and bartonella, which I suspect I may have. Will continue to take Alinia, alternating it with Flagyl, under the theory that it might treat cyst form of Lyme like Flagyl may, but also with the idea that I may still need to keep some babesia under control Been getting intensive acupuncture for immune regulation, with the acupuncturist somewhat targeting air hunger issues even though they were mostly gone Air hunger has been gone completely in the last 6 weeks, and was only occasionally coming up in the couple of months before then.
notes: I was on low dose naltrexone at first (but can't afford it, at only $54/month!). I think it made me have more of a herx response to all the treatment. I do think that it seemed to prevent my having major candida overgrowth issues, thank God. I'm going to try to find cheaper sources of it again.
also- I'm quite sure I had babesia but never got a test. I just can't afford to spend $220. Whatever it is that I had, it's responded to antimalarials and antiprotozoal drugs. I definitely have Lyme, and might have bartonella as well.
I got a lot of my meds from overseas, though various patients just gave me bottles of leftover Mepron, as the Mepron isn't available in generic anywhere yet (for overseas pharmacies, I usually look at pharmacychecker.com and go from there).
Alinia is very expensive in the US but is very cheap in India- $70/month (I ordered from this place, with a prescription: http://www.onlinepharmaciescanada.com/opc/name-search.aspx?drugname=alinia ). While Alinia has not been properly studied for babesia, it seemed to me like it was what finally got my air hunger to go away and I think it's a possible alternative for people who can't afford Mepron.
It's a subtle drug for me- I herx, but more in a weird, 'emotionally flat' sort of way than an obviously physical way like with Lyme drugs.
Biaxin caused me major depression and suicidal thoughts once or twice. I had known about this before, had warned my roommates and boyfriend about it, and it still snuck up on me even though I was watching for it. I was able to stop the drug, re-start a week later, and eventually the psychological problem stopped happening. I am NOT prone to depression normally so I'm just amazed at how much this can 'sneak up on you'.
People say that Mepron causes depression and suicidal thoughts, but I'm quite sure that for me it was Biaxin specifically. Azithromycin does not do this to me. I couldn't afford the zith so I kept trying the Biaxin. I have a LOT of confidence in my own mental health. If this happens to you on babesia treatment and you are prone to suicidal thoughts or depression, PLEASE do not play around with re-starting these drugs without telling your doctor AND having people around you who can check up on you. I've heard horror stories about people having uncontrollable suicidal thoughts while on babesia treatment. Suicide seems to be the most common way that Lyme patients die of their disease. I'm lucky that I was able to tolerate my medication after the second attempt at re-starting it, without the depression coming back. Some people may not be able to do so. Depression is also a major symptom of this disease. Don't take it lightly.
Biaxin probably caused me vicious insomnia. I can't believe how horrible this was. After trying lots of things that didn't help, I started using very low doses of Klonpin- 1/4 of the smallest tablet it comes in. It still didn't always help all the time, until I stopped Biaxin and started Rifampin/Bactrim/Flagyl etc
This past spring, cryptolepsis was unavailable from the supplier for a while. This was very unfortunate as I think it really helps me a LOT. I was taking fairly large doses (teaspoon three times a day, I've heard of larger doses still online). from talking to Woodland Essence, the supplier of the tincture, I don't think they're going to have this problem again.
Last time I saw the LLMD, a couple of months ago, I had just had some residual air hunger reappear, not very strongly. It seems like it would re-appear whenever I was herxing from Flagyl or other Lyme drugs. He wanted me to consider IV clindamycin, because he thinks that I shouldn't have had babesia symptoms for this long, and thinks that if it still re-appears under stress, it may be good to try IV protocol. He's been trying to get me on IM bicillin or IV drugs for ages, because he believes I won't improve on orals. I can't afford it and am taking a gamble on this gigantic chemotherapy cocktail of up to 4 antibiotics at once. I think I've gotten the remaining air hunger under control since then, and am off all babesia meds except bactrim. We'll see what happens this winter- I still have a lot of Lyme symptoms, and who knows what happens next time I switch meds or stress myself.
I'm aware that some babesia symptoms are also symptoms of Lyme or bartonella.
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Pain is horrible and is getting worse. I want to die.
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