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

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