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Old 01-24-2017, 05:00 PM #11
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One more thing I'd like to add that I've recently learned about Lyme and large fiber nerve damage (which I have as well). The immune system mistakes your myelin sheath for the tail of the flagella of the Lyme bacteria. Antibodies are created that damage the myelin of the peripheral nerve and abnormal EMGs start to turn up.

Before my full body condition came on, an EMG found an axonal delay in my right peroneal nerve. The best and brightest could not figure out why. It made no sense because I did not have an injury nor was I doing any of the typical things that cause a compression. Then my full body condition came on like a hurricane a few months later.
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Old 01-24-2017, 06:41 PM #12
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Hi NicoAVA - I do not have a lot to add from a medical/diagnostic perspective. I did just want to let you know that you are not alone as a person in their 20's. I am 23 and had my very first symptoms at 18 (these were actually mostly motor nerve related) and then my first consistent sensory symptoms at 21. My symptoms also seem to come in waves. I have long periods of relief, although feet burning has become something I feel most mornings, followed by longer periods of discomfort (anywhere from a week to 6 months). Doctors do not know what is causing this for me and essentially are fine with leaving it that way for now (which yes is very frustrating). Anyway, just wanted to say welcome and I hope it helps to know you are not alone
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Old 01-25-2017, 05:41 PM #13
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Here is a small paper from Normal Latov:

Neuropathy and cognitive impairment following vaccination with the OspA protein of Borrelia burgdorferi. - PubMed - NCBI

After the Lyme vaccine was given to people, it was very damaging and was pulled off the market. It caused neuropathy and autonomic issues in addition to other symptoms. It was a pretty big disaster here in the US.

Latov is suggesting that immune mechanisms are at play in patients who have chronic Lyme.
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Old 01-25-2017, 09:32 PM #14
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I had to search around for the full text:

LymeNet Flash: Link between LymeRix and Peripheral neuropathy?
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Old 02-02-2017, 05:17 AM #15
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Hi boiler, hi madisongrrl!

THANK YOU for the support and the great information. Sorry for this late answer.

Boiler, are you on meds currently? Do you have an accurate diagnosis, since it seems that you have large nerve involvement? Thanks for the warm welcome! I hate doctors just not pushing further to find a diagnosis. It is so frustrating. I feel for you!

Madisongrrl, that is a GREAT piece of information, thank you. I always suspected my issues to be immune related as it all started early after a first-stage of Lyme disease. It started Guillain Barré style. I push the doctors to consider auto-immune basis but the blood results do not seem to reveal anything. I mean come on, it must be from something!
The article you posted really makes my theory stronger. Thank you. How are you these days? How is going the antibiotics treatment?

All the best to you both.
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Old 02-02-2017, 01:38 PM #16
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Hi NicoAvA - I am currently only taking a beta blocker for tachycardia that started after all the other nerve issues. So here is the odd thing, my large fiber involvement stopped about 6 mos after it started and then the small fiber took over. Doctors originally told me that my symptoms were a reaction to a virus and that the small fiber symptoms should fade in time. Well they did not fade and my docs diagnosed it as Non-length dependent SFN. I did have a skin biopsy however because I was 19 at the time the results could not be fully interpretted. I had ENFD that were within "normal limits" however my issue here was always that the normal is for an average age of like 45 or 50 and it is proven that nerve density decreases with age. Anyway with the same biopsy I had an abnormal sweat gland nerve fiber density. That along with two abnormal QSART test my doc felt comfortable diagnosing SFN.

I took several medications over the past 5 years. I started with gabapentin but found it made me spacey and light headed. Then I tried cymbalta. This was a terrible choice for me - completely made me "lose myself" and made me lose all appetite. After that awful experience I did not decide to try again until a huge flare when I started my first job. I had symptoms all the time every day for months before I decided to try again. This time it was Lyrica. I tried that for about a year before realizing it was the reason I would almost fall asleep at the wheel of my car and also was effecting my mood a lot. So now I have been drug free for about a month and half. So far no major flare, just feet hurting when I first wake up and some occasional other sensory symptoms.

Do your symptoms come and go as well? that is what perplexes me the most. Every time they go away I really do think they will never come back. So I guess we'll see what happens this time.
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Old 02-02-2017, 03:17 PM #17
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Quote:
Originally Posted by boiler1993 View Post
Hi NicoAvA - I am currently only taking a beta blocker for tachycardia that started after all the other nerve issues. So here is the odd thing, my large fiber involvement stopped about 6 mos after it started and then the small fiber took over. Doctors originally told me that my symptoms were a reaction to a virus and that the small fiber symptoms should fade in time. Well they did not fade and my docs diagnosed it as Non-length dependent SFN. I did have a skin biopsy however because I was 19 at the time the results could not be fully interpretted. I had ENFD that were within "normal limits" however my issue here was always that the normal is for an average age of like 45 or 50 and it is proven that nerve density decreases with age. Anyway with the same biopsy I had an abnormal sweat gland nerve fiber density. That along with two abnormal QSART test my doc felt comfortable diagnosing SFN.

I took several medications over the past 5 years. I started with gabapentin but found it made me spacey and light headed. Then I tried cymbalta. This was a terrible choice for me - completely made me "lose myself" and made me lose all appetite. After that awful experience I did not decide to try again until a huge flare when I started my first job. I had symptoms all the time every day for months before I decided to try again. This time it was Lyrica. I tried that for about a year before realizing it was the reason I would almost fall asleep at the wheel of my car and also was effecting my mood a lot. So now I have been drug free for about a month and half. So far no major flare, just feet hurting when I first wake up and some occasional other sensory symptoms.

Do your symptoms come and go as well? that is what perplexes me the most. Every time they go away I really do think they will never come back. So I guess we'll see what happens this time.
Sorry to hear that you had such a bad experience with pills....
My symptoms absolutely seem to come and go. During my first two years, it remained mild and the flares sometimes lasted one or two weeks only. So a normal life, a manageable pain. But a couple of months ago I had a huge flair with burning and bad allodynia. Allodynia is my main problem, by far. These days the pain seems to gradually go.
Before my huge flair I really felt like I was almost healed, so it has been very hard. It is very confusing that it comes and go. In a way, that gives me hope that we can work on preventing the flares, and eventually be healed.

My doctor said, so far, that I have no nerve death but "nerve hyperexcitability"
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Old 02-02-2017, 05:20 PM #18
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Thank you, are you currently taking anything? I would never say it won't work for you or anyone, I have just learned to be cautious, sometimes side effects can mask themselves or sometimes you may not even realizing it is the medication that is causing a problem.

What type of allodynia do you get? I have this symptom as well. It is mainly sensitivity to the clothes around my "trunk" as the docs like to call it (aka sides, back and stomach). How spread out do your flares seem to be? This is what really perplexes me. My history has been three years ago I had my first bad flare and it lasted about 6 months of sensitivity to my clothes. Then the occasional mild flare in between. Next big flare was a year later and lasted over 6 months. Again have had a week long flare here and there since but nothing consistent/long term. What kind of pattern do yours follow? You would think the "flaring" pattern would tell docs something but never seems to interest them when I bring it up. It has been about a year since that last flare (although I took Lyrica in between so that may have helped keep it at bay) and now a month medication and flare free.

I completely understand the feeling when you feel so good and then hit that huge flare. Again you are not alone! It is hard for 20 somethings to accept these things as well especially the uncertainty! I still (even though I know it is foolish) cannot accept that another flair will occur. I really do wonder if it will happen again and feel hopeful it won't. But this will be a harsh reality to re-enter if/when it does flair again.

Hyperexcitability was a term they used a lot with me for the first couple of years. Do you have any other symptoms? I also get some triggered sensations that come without flairs - like the feeling of water running down my legs when i get too warm or sometimes when I am cold I feel like I have bugs crawling on my legs. Weird stuff but all I can handle.
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Old 02-02-2017, 06:15 PM #19
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Quote:
Originally Posted by NicoAvA View Post
Hi boiler, hi madisongrrl!

Madisongrrl, that is a GREAT piece of information, thank you. I always suspected my issues to be immune related as it all started early after a first-stage of Lyme disease. It started Guillain Barré style. I push the doctors to consider auto-immune basis but the blood results do not seem to reveal anything. I mean come on, it must be from something!
The article you posted really makes my theory stronger. Thank you. How are you these days? How is going the antibiotics treatment?

All the best to you both.
Parts of me are improving and parts of me are not. IV abx have been a great help, but it's also quite an undertaking with the cost, weekly bandage changes and weekly lab draws to monitor kidney and liver function.


I think the neurologist is not going to be of much help to you unless he wants to get you IVIG....which is highly unlikely. I've corresponded with a lot of people about their Lyme neuropathies. The ones that have had successfully recovered have treated their infections with a combo of herbs and antibiotics, got treated with IVIG and have used mild HBOT. One person I know had full body burning for 8 years and couldn't stand to even wear clothes. They didn't get IVIG, but bought a home mild HBOT unit. They are totally recovered now, but it took 60+ dives to get traction.
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Old 02-07-2017, 08:17 AM #20
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Quote:
Originally Posted by boiler1993 View Post
Thank you, are you currently taking anything? I would never say it won't work for you or anyone, I have just learned to be cautious, sometimes side effects can mask themselves or sometimes you may not even realizing it is the medication that is causing a problem.

What type of allodynia do you get? I have this symptom as well. It is mainly sensitivity to the clothes around my "trunk" as the docs like to call it (aka sides, back and stomach). How spread out do your flares seem to be? This is what really perplexes me. My history has been three years ago I had my first bad flare and it lasted about 6 months of sensitivity to my clothes. Then the occasional mild flare in between. Next big flare was a year later and lasted over 6 months. Again have had a week long flare here and there since but nothing consistent/long term. What kind of pattern do yours follow? You would think the "flaring" pattern would tell docs something but never seems to interest them when I bring it up. It has been about a year since that last flare (although I took Lyrica in between so that may have helped keep it at bay) and now a month medication and flare free.

I completely understand the feeling when you feel so good and then hit that huge flare. Again you are not alone! It is hard for 20 somethings to accept these things as well especially the uncertainty! I still (even though I know it is foolish) cannot accept that another flair will occur. I really do wonder if it will happen again and feel hopeful it won't. But this will be a harsh reality to re-enter if/when it does flair again.

Hyperexcitability was a term they used a lot with me for the first couple of years. Do you have any other symptoms? I also get some triggered sensations that come without flairs - like the feeling of water running down my legs when i get too warm or sometimes when I am cold I feel like I have bugs crawling on my legs. Weird stuff but all I can handle.
Hey boiler!
Thanks for the reply. Wow, your pattern is very similar to mine.
I had a slow onset of symptoms, and gradually allodynia (sensitivity to clothes, mainly in arms and legs) developped. The first flair lasted 6 months and then the symptoms disappeared. During two years, I had like 6 or 7 minor flares where symptoms lasted only 1 week or more, and then disappeared. So I thought I would be OK eventually! But in october, wow, biggest flair. Full body (and I mean full, with newly my neck involved) allodynia, burning in hands and neck, intolerance to bed sheets during one horrible week. Since then the symptoms seem to very gradually go. But it takes time ! And I am scared to not have found a doctor that will try a treatment.

I have stopped Lyrica. I think I had a too low dose to help. And I can do without so it is good. But I think my life has reached a turning point as I am anxious of the future and I do less activities than before (I am a tennis lover and have not played for months due to clothing hurting).

Again, our patterns are very similar. I am just like you, I am sad that doctors do not seem to try to understand that. They are just like "yeah, neuropathy symptoms can come and go".

I strongly believe that my issues are auto-immune following lyme infection. I have always thought that, it makes so much sense. So I am glad madisongrrl confirms that to me!

So how are you doing these days? Living a pretty normal life?
All the best!
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