Small Fiber Neuropathy? Lyme Disease, Help

As some of you may know, In early 2016 I tested positive for Borrelia Burgdorferi after contracting it a few years ago. Horrific short term memory issues, mild skin issues/sensitivity and at times psychotic like episodes including detachment and derealization. I've started antibiotics a little less than a year ago. During that time I also tested positive for Co-infections including Mycoplamsa, EBV, Bartonella and Babesiosis. IV antibiotics have helped tremendously in regards to neurological problems, though I still have memory relapses here and there.

THE PROBLEM, 4 months into starting IV antibiotics (Rocephin) and a few oral antibiotics I've developed joint pain and HORRIFIC SKIN PAIN/Sensitivity, I've had a MILD sensitivity for a few years but nothing like this. It feels like I have a full body sunburn without being sun burnt. It fluctuates and is worse in the morning and at night. I haven't been able to make a clear distinction as to what may be causing this. I'm positive that it isn't an antibiotic interaction because I hadn't changed my meds at the time of it developing. I thought it might be light or sun sensitivity causing it but that wasn't the case either.

Sleep helps somewhat. If I have trouble sleeping, in the morning I'll likely experience severe skin sensitivity. In most cases I'm unable to put on a shirt without screaming and even my hair when it touches my neck is very painful. Basically, this as well as joint, muscle and bone pain are my only problems but have taken a toll on my life. At least with my neurological problems I walked my dog and tried to do things.

I've talked to my nurse and MD and they do not know what it is and are referring me to a dermatologist. In my research, I have discovered something called small fiber neuropathy. The symptoms seem very similar to mine from the burning, numbness, wet/cold skin that I experience to the extreme sensitivity. Alpha Lipoic Acid does seem to help lessen the sensitivity but it also gives me heart burn.

I'm nervous because the consequences of mall fiber neuropathy can be detrimental. IDK, no one really knows what this is but I assure you it feels like hell. I'm in my early twenties and want to live like I use to, I'm getting tired of feeling uncomfortable every day.

birthday suit - I'm so sorry for what you're experiencing.

Have you stopped the IV abx? I'm not saying it's a side effect of the med..but it may be causing a herx?

Is it your LLMD that you've discussed this with?

Also, seeing a dermatologist isn't going to do much, unless they are steeped in punch biopsies and neuropathy. The doctor who diagnoses small fiber neuropathy is called a neuromuscular neurologist. Generally, they will have you undergo a EMG/NCS to rule out large fiber damage. If that is negative, then they will offer a punch biopsy, which counts the quality and quanity of the nerve fibers from the skin sample

Some neuros will skip the punch biopsy, because they figure it's small fiber neuropathy and if you are not diabetic, then it's idiopathic (in their limited minds).... and it won't change the course of treatment, which is just palliative and not curative.

So, madisongrl - if the treatment is too aggressive and you have the small fiber neuropathy...from an autoimmune response...eventually when you stop treatment, will it calm down?

Somebody said...
Hi birthdaysuit,

I have full body small fiber neuropathy that is a result of untreated and persistent Lyme/coinfections. I know how painful and frustrating this situation can be. My neuropathy came on full body, rapid onset - subacute presentation Guillian barre style. I've never felt so close to death in my life...the burning was intense and spread all over my body. I went to the ER and urgent care several times.

Mine isn't as severe just very painful and uncomfortable. It progressed slowly for awhile before ramping up abruptly. I'm not sure if small fiber neuropathy fluctuates or if it is a constant pain. I always have slight sensitivity but it fluctuates from severe burning and discomfort to moderate to mild but it is always there. Thanks for the links!

And YES, I underwent a nerve conduction test which looked at large nerves and their functioning. Everything was normal, there was a slight deviation in my feet area but nothing severe. At that time I was only experiencing mild skin pain.

Currently and for the past few months I've had this pinkish, prickly rash across my abdomen, chest back, neck, arms and trunk. Occasionally it spreads to my legs too. It's noticeable but nothing too pronounced just a weird dull prickly rash. When my skin is severely hurting, especially when I screw up my sleeping schedule the rash can become easily noticeable.

I am taking Zithromax, Rocephin IV, Minocycline, Actigall, and Malarone w/ herbs and minerals. I have made any sort of connection between antibiotic usage and these sensations. It might be immune induced, or the suppression of the immune system might increase infection load? When I take things like ALA or organic Whey with immunoglobulins I feel slightly better but that could just be placebo. My LLMD wanted me to go see a dermatologist but he is well versed in neurology.

The sunburn is there, the sweating, tingling and burning are all present to some degree. I've thought that this was a herx but I guess I was mistaken. I'm still not sure if SFN is what I have. I tested negative on the nerve conduction test (EMG) but I'm not entirely sure what other conditions would cause my skin to hurt so bad that putting on a shirt is a chore.

For medication other than the antibiotics I mentioned, I'm not taking anything that is specifically designed for SFN or nerve issues. I'm currently taking organic B-Complex, Vitamin C, Whey protein, ALA, Olive Leaf, Curcumin, Vitamin D 2000IU, Reishi; all with a good, healthy diet.

Somebody said...
You might want to check to see if you have morgellons disease. 70% of sufferers do not get the skin sores that are slow to heal. Severe neuropathies are associated with this.
To check you need a 60x mini microscope (the type jewelers use) and look under your nails where they are often found. you will be looking for wirey looking usually black fibers. about 7% of people with lyme disease have morgellons. Everyone with morgellons has lyme disease.

The majority of people who have morgellons are wrongly diagnosed with something else.

I have enough problems to deal with. Moregellons is very real but the scrutiny and the inadequate understanding and testing needed to diagnose is virtuously impossible. I have my diagnosis, I tested positive for Lyme, Bartonella and Babesia. These can all cause nerve issues.

Post Edited (birthdaysuit) : 11/23/2016 7:47:05 PM (GMT-7)

I also get the sunburn sensation. When I wear some clothes it doesn't happen=over years I have gotten better at knowing which clothes. You may want to pay attention to when it good and bad

Girlie said...
So, madisongrl - if the treatment is too aggressive and you have the small fiber neuropathy...from an autoimmune response...eventually when you stop treatment, will it calm down?

If you are taking any type of herb or antibiotic and it flairs your neuropathy (regardless of the type or presentation), then definitely stop taking and/or change the medication.

I took oral Minocycine and I thought that I was going to die. I flared every piece of neuropathy in my body (I have large and small fiber along with trigeminal neuralgia). I stopped and it went away in about 2 days.

Doctor H. talks about neuropathies in his book. Treating people with significant neuropathies seems very trial and error. He has been working with other doctors to find what combinations of drugs work for resistant neuropathies and said he should know more shortly.

Girlie said...
I had the nerve pain prior to treatment.

I don't have the nerve pain all the time, though. I have the odd day (once or twice a week) where it is minimal or not there at all.

That is a really good sign. Maybe your neuropathy will fade away over a few years time.

Traveler - When did your skin start burning and how long did it take for your symptoms to clear up?

I too was recently diagnosed with some small fiber neuropathy in my right leg by way of a sweat test, after having suffered with lyme for over a year.

I also believe based on my research that this is very common in lyme.

Small fiber nerves control many of the autonomic functions such as blood pressure regulation, temperature regulation and digestion.

and trumpet, while I understand you are trying to help, there is very little evidence that 'morgellons' is even a real disease. I would very seriously question any doctor who provides this diagnosis. I'm not sure where you are getting those statistics, but to say that 70% of people with lyme also have this is beyond questionable.

I agree with the OP, but I will go a step further and question the idea of 'morgellons' completely. We are discussing lyme and known tick borne coinfections, and while we do suffer from people not taking our diseases seriously, there is no disputing that these diseases actually exist as there is a major question in regards to 'moregllans.' I think it's best not to overcomplicate an already complicated situation. This is a problem that we lyme sufferers deal with constantly. If it's not 'morgellons' it's mold, or some other just discovered protozoan. Why can't we just recognize that Lyme itself is very difficult to treat without naming other untreatable 'x-factor' culprits? Babesia Bartonella and lyme are hard enough to deal with. Throw in mycoplasma and candida, but it has to stop somewhere. We know that lyme and bartonella can cause nerve damage in animals and people as this this has been repeatedly documented in medical literature.

Not to minimize your suffering, but if you have had known tick exposure and are seriously considering 'small black fibers' as the cause of your ailments, I strongly believe you are barking up the wrong tree.

logmoss82 said...
I too was recently diagnosed with some small fiber neuropathy in my right leg by way of a sweat test, after having suffered with lyme for over a year.

I also believe based on my research that this is very common in lyme.

Small fiber nerves control many of the autonomic functions such as blood pressure regulation, temperature regulation and digestion.

I'm guessing you had a QSART. My face and arms are the worst - they turn red when exposed to heat.

This autonomic stuff seems very common in Lyme. At the onset of my symptoms, I had POTS like symptoms and probably would have failed a tilt table test.

logmoss82
i did not say 70% of people who have lyme have this
I said 70% of people who have morgellons do not get the sores that heal slowly.
And yes, recent research does show that it is a real disease
And the most recent book called Morgellons written by Dr. Ginger Savely hot off the press is the first book published as a factual guide. She treated over 900 patients.
Only about 7% of lyme patients have morgellons. One other expert says between 6% and 10% of lyme patients have morgellons.
no - lyme disease and coinfections does not have to stop at babesia and bartonella. We want it to stop at wherever science brings us.
Dr. Savely said the majority of her morgellons patients had been misdiagnosed. I am all for letting the knowledge get out there so that others are not in the dark. Why should i perpetuate the unawareness I experienced.
Get your 60x mini microscopes out and check to be sure. Doctors don't seem to know they should be checking all their lyme patients for the black fibers.
That is my view anyway.

saraeli said...
The first thing that came to mind reading your description was mast cell activation disorder. Just thought I'd mention that in case it's a piece of the puzzle.

This sounds so tough. I wish you swift healing!

Sara

Saraeli - not sure if you realize that this thread is over two years old.