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

--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

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

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.