Small Fiber Neuropathy - my story
 

Hi everyone,
To begin with, I must say I am pleased to have found this place and I am seeking advice from those of you who have been where I am ;)

I am Nicolas, live in France and am 26.

When I was 24, I had a trip to Finland where I was bitten by a tick (unnoticed at the time). When back, I had a planned surgery (inguinal hernia). It all went fine.
A couple of days after the surgery I noticed a huge red rash on my leg. Went to the doctor who gave me 3 weeks of Amoxyciline for suspicion of Lyme disease (first stage). I was very stressed because of the Lyme disease and its potential effects.
2 weeks after beginning the treatment, I started feeling vibrations in my left hand. 2 hours after, my right hand. At night, my feet and neck.
Went to the doctor who suspected Guillain Barré. I spent one week at the hospital and they found nothing. Then, through the next months, the symptoms slowly turned into allodynia (mostly legs and arms) and mild pain.

During two years I had "flares" : the pain was quite bad during a few days and then gradually decreased, at the point I was symptom free during months. I did not worry much as I lived normally, doing sports, travelling. I had regular appointments with a neuro in my town; not such a good one I guess cause he never mentionned SFN. I veryyyy often had muscular fasciculations, mostly in my legs (sometimes continuously during two hours...).

A month ago the symptoms came back. I fell like this time it was different, and two weeks ago I experienced sharp burning pain in my neck (which is kind of a new symptom for me). I was really depressed and overwhelmed. The pain is worse with contact with sheets or clothes. The fasciculations are nearly gone which, in a weird way, is worrying to me (as if I felt it helped my nerves and relieved the pain).

Today it is a bit better but my body is so unconfortable. I am only 26 and I am afraid.

My neurologist did not seem do know about SFN. I am seeing a new one in Paris in a month, who seems to be the best in France in this area.

To me, it is pretty obvious that either it is due to Lyme, or to the antibodies it produced.
What is upsetting is to know that I had months symptoms free (which is hard to understand), which made me hope it would fade and disappear for good. And here I am, worse than ever. My pain is all over my body.

Thanks for reading me, I will be glad to have feedback from you guys

Have a good day

Nicolas

Obviously--
 

--you need a Lyme literate physician.

I know you are thinking about a sensory variant of Guillain Barre, and there are such variants, often grouped under the rubric of acute onset small fiber neuropathy, with suspected immune-mediated mechanisms (as I responded to you in the other thread):

Acute small fibre sensory neuropathy: another variant of Guillain-Barre syndrome? -- Seneviratne and Gunasekera 72 (4): 54
-- Journal of Neurology, Neurosurgery & Psychiatry

Pain Differential Diagnosis

GBS

But this sounds like a result of your Lyme infection, and/or a coninfection (often with Lyme other nerve affecting bacteria are transmitted at the same time, and these can be difficult to isolate).

Chronic Lyme has many bad effects, and neuropathy and neurologic problems are prominent among them. This does sound like more an effect of the Lyme infection than a separate acute onset small fiber issue.

See:

Infections & NM disease

Lyme Disease: Practice Essentials, Background, Etiology

Thank you for your answer !

My concern is that in my case it does not seem to be "acute" but chronic :(. The pain was really mild during 2 years, but now it is a bit different.

Also, what is really weird is that between the tick bite and the symptoms there were only a few weeks. Suggesting it would be a bit a short time to have chronic Lyme.... I had surgery under global anesthesia after the bite. Maybe the body immune system asleep allowed time for the Lyme bacteria to spread....

Anyway, I am confused. Dark times...

Hi Nicolas. Science has moved well beyond the way most conventional physicians are treating this disease. We know that Lyme persists in the test tube, in mice, in dogs, and in monkeys. In the near future, we should have more accurate and more direct testing methods, I'm sure we will be able to prove the infection persists in humans as well. Some LLMDs have actually PCR cultured their patients and have proven persistent infections after long-term antibiotic treatment.

I agree with Glenn, you really need to see a Lyme Literate clinician. I know that it will be challenging to find one outside of the United States, but you might have a persistent infection driving this autoimmune neuropathy reaction.

Only a few weeks passed between your tick bite and your symptoms, but you could have been infected before that and the infection might have been dormant. Also, coinfections are pretty much the rule with Lyme and not the exception. For instance, if you had Babesia and Bartonella, 3 weeks of amoxicillin would do nothing to address those infections. The surgery you had could have played a role in all of your symptoms by putting undue stress on your body and immune system.

I'm seeing more and more people with these types of neuropathy presentations on my Lyme forums and Facebook groups. My heart goes out to them. I recently corresponded with a lady from my home state of Wisconsin. She was bitten by a tick and 9 days later ended up in a hospital with full body neuropathy. Neurology said they have never seen a case like this. But the truth is, because testing is so poor, that neurologists are not making the connection that Lyme and coinfections are the cause of a variety of neurological conditions, both acute and chronic.

If you look for posts under my name, you will see what I've been going through with my neuropathy presentation and Lyme diagnosis.

Hi madisongirl ! Thank you for the advice.
How did it go for the woman you are talking about? Did she recover? Was she treated for Lyme and co-infections?

My blood tests suggest that I did have a recent infection (high IgM) but my IgG were negative so it would mean no prior infection...

This happened very recently for this woman. It was very similar to a Guillian Barre/ascending paralysis reaction, so she still has a lot of nerve pain and is currently in treatment for Lyme. I can't remember if they gave her IVIG or not.

Most infections work like this - an IgM response is mounted to a new infection and after 3 months is replaced by an IgG response. This is what conventional doctors are taught. Lyme disease is the exception to this rule. People get strange antibody responses, so normal assumptions can't be attached to IgM and IgG for this disease.

Chronic Lyme patients will have an IgM response, but not always an IgG response. This is especially seen in the sickest patients. IgM antibodies can remain positive indefinitely.

LymeMD: The IgM question: Is it chronic Lyme disease?

epitope switching | lymed out

Oh ok didn't know that.
Actually when I had some blood tests for Lyme after my infections the docs were surprised cause they did not see conversion from IgM to IgG.They found it weird but I was told It was useless to carry on another test.
However, I must say that I had twice 3 weeks of abx ; amox then doxy.
Should I get a test now to see if the seroconversion has been done ?

Thanks :)

I don't think getting another test done is helpful, unless you see a clinician that is Lyme Literate. Your current doctors won't know what to do with another test result anyway.

You might want to contact ILADS.org and see if they can email a list of Lyme Literate Medical Doctors in Europe.

Hi everybody
So here is an update of my situation!

I have been seeing a well-known doctor that is specialized in SFN and Sjogren's. He offered me to take me to the hospital for three days in order to have extensive tests done. I was at the hospital last week.

And... NOTHING came back from it.
I did not expect to have an underlying cause identified, but at least I thought they would confirm SFN for sure... but they did not.
I did not have a skin punch biopsy (even if I asked for it), as they told me it would be useless, as all my small nerves were functionning just fine. The test I underwent is called Laser Evoked Potentials and came back normal -which, for them, means that my small nerves are all there-.
To conclude, the doctor said that it might be an early stage of SFN, with hyperexcitability. He explained that before dying, small nerves are first hyperexcitable.

Coming to an underlying cause, they ruled out the Lyme (haha, what a surprise). Even though I have a confirmed first stage of the disease, the tests they performed at the hospital (blood and from lumbar puncture) all came back negative in Igm and Igg. I was blown when a neurologist I saw told me that "Lyme is simple to treat, you had the antibiotics blabla and even if you still have it now, this is too late to do anything..." Incredible
I tried to mention an auto immune driven reaction (as it all started Guillain Barre style), but they did not go further on that.
I don't have any underlying cause identified so far. I don't have autonomic symptoms.

I felt like it was the greatest SFN spectialist in France and here it is...

I am now so scared. He is seing me back in 3 months and offered nothing but Lyrica.
I am 26 and life does not feel the same anymore. I live with the pain and the fear of the disease. I am scared about my future, and it is getting hard for my girlfriend, family and friends to see me like that. I see all my friends traveling, getting married and having babies, and I feel like I can't do that at the moment, which is very depressing.

I have read somewhere a post by en_bloc explaining that skin biopsy can show not only loss of fibers but also damage. I don't know yet if I will be able to have a skin biopsy shortly.

So now I will look for a LLMD as you guys suggested, however it is going to be hard.
Madisongrrrl, your doc thinks that your SFN is immune mediated and not caused by the Lyme itself (or co infection), am I right? So what can be done to stop this process?

I also want to start supplements, I need to read about that.

Thank you for reading ! All the best to you all.

Lumbar punctures are well known to come back negative in patients with late neurological Lyme disease. One of the more prominent LLMD said he only saw it come back positive in 9% of his Lyme cases. So I wouldn't put too much stock in this.

Don't be too let down by this. This is what the neurologists are incorrectly taught. If they actually had the time to sit down and review the whole body of medical literature on Lyme, instead of relying on medical school, they would find that this topic is way more complex and nuanced than they were originally taught.

Don't worry about this too much. If the opportunity presents itself, definitely get it done. However, the most important thing is finding the cause to your symptoms.

My SFN is caused by Lyme and is likely immune-mediated due to the presentation. I have whole body neuropathy symptoms with face and trunk burning, which means that it was my nerve roots that were damaged.

The damage some of us suffer from is due to the immune system chasing the bacteria around our bodies. Reducing your pathogen load through proper treatment will make a difference. The first thing I noticed after I started treatment, is that all my hand pain reversed very quickly. I'm still assessing what is getting better and what might be damaged indefinitely. It's a work in progress.

Here is another great article that I just read where a Yale-trained doctor goes point for point with an IDSA doctor and demonstrates that this is not a black and white disease.

Yale-Trained Doctor Refutes Dangerous Misinformation Given by CDC's Dr. Paul Mead on Fox 5 Lyme Special | The Huffington Post

Here is a 2 part article with the same doctor.

Where CDC Guidelines Fail, Leading Lyme Doctor Succeeds (Part 1) | The Huffington Post

Where IDSA Guidelines Fail, Leading Lyme Doctor Succeeds (Part II) | The Huffington Post

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.

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 :hug:

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.

I had to search around for the full text:

LymeNet Flash: Link between LymeRix and Peripheral neuropathy?

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.

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"

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.

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.

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!

Hi madisongrrl. Glad to see you had some improvement, although we all know it is a long road.
Do you pay all your IV antibiotics yourself? No insurance will cover it?
I too think I need to see a Lyme literate doctor here in France. There seems to have less than in the US.
In my case, as I was treated 2 times with antibiotics (3 weeks amox, 3 weeks doxy) early after my infection, I really don't know if I have persistent infection. I think that the infection triggered the auto immune reaction, and so I think I would benefit fro IVIG. But it seems like it is hard to get.

I hate feeling that I have to wait to worsen to have a better treatment.

It is very great to see that some people have healed. I had no clue about HBOT and had to search. Looks like an interesting alternative treatment, but I have no idea how I could have access to that ! Do you plan to try?
Wishing you the best

I've definitely had improvements, but I'm not really close to being normal, I'm afraid. My face has been badly damaged with neuropathy and doesn't sweat. I still get a healthy amount of burning all over my body, especially when a flair kicks up. My arms and face feel like someone took a steel wool to them; it's a symptom that has never lessened.

I also have atypical face pain (TN2) that extends from my throat to my ear and causes a balance disorder. I saw a PT who does both neurology and vestibular disorders, who looked at all my medical records and wants to send me to an autonomic cardiologist for a beta blocker. I declined on pursuing that.

Sometimes I get very upset with myself for not acting faster with looking into Lyme disease. Maybe some of these symptoms would have reversed. But I always try to be grateful for my improvements....and remember back to the first 6 months of this awful, painful monster. Things could be worse. I'm lucky that I'm able to work and not everyone who has this condition can. My dysautonomia symptoms are stable due to light pool exercise and antibiotics. I also have to credit my nerve medications for masking my pain and my awesome boss who pretty much lets me work at home as much as I want. And I don't have to do much client facing, which can be draining.

My case was substantial enough insurance did cover my IV antibiotics, but insurance became a pain and a danger to deal with. They can just up and decide to reject your antibiotics claim at their whim, which they did for my second month of treatment....this was after their representatives told me that I was covered. For instance, the pharmacy jacks the price and attempts to bill the insurance $4000 per week for something that costs $175 a week. Ridiculous!

So after 2 months, I'm now going out of pocket. The price ranges from $175 - 225 per week. My friend is a nurse and does my bandage changes for free. I have to do weekly labs (CBC & CMP), but they are free for me because of who my employer is. Many people who have Lyme are bedridden and unemployed. I don't know how they afford this. Even when I let insurance cover my antibotics, the price was still $175 per week.

The length of the antibiotics that you received likely didn't even touch the infection. Plus you need more than one antibiotic at a time. Some LLMDs will do up to 3 at a time, depending on their pulsing schedule. This is to address the different forms of Lyme, which I think we've seen in both test tube and animal models.

Don't wait too long to find an LLMD. I think there might be some in Germany as well. You might even consider coming to the United States if you can afford it. Sometimes LLMDs will require you to be there in person for that first appointment but might give you the option of doing all the follow-ups over the phone. Dr. J in Washington DC operates this way. People come from all over the world to get treated by him and do their follow-ups via phone.

It's great to hear stories like this. We need to hear stories like this. I had some understanding about HBOT, but I've been researching it more since corresponding with people that it helped. I'm thinking mild HBOT might be something to try for 2018. I'll trial it out at an HBOT facility first, and then if I think it could help, I'd buy a home unit. Because it only seems to help people who do it consistently and frequently. Due to the price and convenience, you really need to buy a home model to make it reasonable.

Dr. J (a different one from Maryland, US) has had success with HBOT in his Lyme practice. Here are a few links, if you are interested:

LymeMD: Hyperbaric update

LymeMD: Immune hyperstimulation, Lyme disease, lymphoma, hyperbaric oxygen therapy (this post has an identity crisis)

LymeMD: More about HBOT

LymeMD: Lyme, POTS, Mast cell activation syndrome: a constellation.

Good luck and please keep us updated!

Sent you a private message!

Nico,

I hope this question is not too invasive, but I feel it is relevant. Did you have any sexual contact during the month before the appearance of the rash on your leg? Also, where on your leg was the rash (thigh, lower leg, groin, etc.)?

I have similar symptoms to yours that started after a herpes virus infection. Herpes viruses are neurotropic and can cause lots of neurological issues, though the medical establishment doesn't fully recognize them. I'm a member of a group on a different forum of people with neuropathy/neuralgia as a result of herpes infections.

HBOT question
 

Madisongrrl, I'd love to know whether the Mild HBOT was with oxygen, or just the mild chamber by itself. I'm only just now entering the wilds of peripheral neuropathy, and it is totally freaking me out. But mild HBOT might be an option for me. I hope you are still around and might be able to answer this. (I tried to private message you and it seems I can't)

So, how are you progressing now?

So it's been 6 months of these symptoms me..started back in January acute onset full body buzzing/tingling which than turned into a deep itch and than the prickly/stinging tingling in the hands I also get a loss of sensation in my hands at times...i think mine is immune induced I can't think of anything else all investigation have come back normal apart from elevated inmflamtory marker which the doctors are not taking seriously i will be going for a skin biopsy soon after aggressively insisting on it.Im 30 no other medical condition family background all clear of any unusual diseases...Can immune induced neuropathy get better?so many variants of this no1 knows the definite outcome

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I also get the body wide twitching I can see the twitching sometimes if I'm wearing a t shirt...ive read alot of stories of people's onset and most people who have had a acute onset have had full body burning or if it's immune induced it quickly affects all ther body..i think I must have felt the burning 2,3 times in 6 months which didn't last long and when my anxitey is high..and also I didn't get full body pain..i do get sensations come and go in different parts of my body the only thing that really bothers me still is my hands...most people with PN/SFN again complain of feet problems but even after 6 months i can run jog walk play sports(when im in the mood)without any issues...BUT I'm still scared of progression I don't know what to expect...i will find out for sure if I have SFN soon

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I have numbness in my feet an I can still do everything including playing Tennis(bad backhand that I can't blame on PN...lol). The twitching so far is interesting, but really does not last long or slow me down.

Could you please tell me more about the background of the patient you know who benefitted from HBOT? Did they have small fiber neuropathy? Besides the full body burning, what else were their symptoms? What all had they tried before trying HBOT?

My symptoms are pretty similar to yours. I hope to read of your getting a complete recovery, as that would give me more hope.