Chronic Lyme Disease and nerve damage

Jova

Try an antihistamine to try to get things toned down.

Loratadine (Claritin), or diphenhydramine (Benadryl).

I wonder if some of the Facebook neuropathy (crazy bad) reports are related to SFN, small fiber neuropathy, as an autoimmune disorder.

Got it Jova I'm sorry to hear that, and I imagine they wouldnt pay for IVIG either. And this is what these idiots are trying to do in the US, makes me so annoyed.

Here is what steven buhner has to say on neuropathy if you plan on going to the herbal route:
http://buhnerhealinglyme.com/lyme/neuropathy/

Girlie, I asked the Dr in CT about that. He seemed to think that treating the lyme could help the IVIG work a bit quicker (i.e. if you remove the trigger, the ivig can calm the system faster), hence the penicillin, but it didnt sound like he thought it would cure the SFN by itself. He was adamant that the IVIG was necessary to achieve remission. The problem is that the SFN is a humoral/antibody driven response. Your body literally begins making antibodies against itself, and once that process is started, even if you remove the trigger, it can keep going. The IVIG floods your body w/ healthy plasma, thereby down-regulating your body's own production of the bad plasma (you already have a ton so you dont need to produce your own). I would imagine if you can remove the Lyme, and calm the system, you could eventually achieve remission on your own. I remember a girl I talked to went to see an infectious disease specialist, and he told her that these pathogen-driven "immune system on high alert" types of autoimmunity often resolve themselves eventually, but it could take years.

The other option that I've heard people recommend that might be affordable, including a colleague at work who swore it cured him, is Ozone. I've read mixed reviews, but there is anecdotal evidence of it working. Worth a shot?

Here's my visit summary from Monday appointment with Dr Novak. I shoud have brought it to work and shared t yesterday, but many of yesterdays' replies and contributions were spot on and very helpful.

"Impression:
1. Small fiber neuropathy manifesting as sensory dysfuncton and autonomic failure, - Due to Lyme disease ?
2. Mononeuropathy multiples
3. S/p MI
4. Chronic Lyme disease versus post treatment Lyme disease syndrome (PTLDS)

Recommendations:
o Autonomic testing + skin biopsy - hold medication at day of testing
o (details and video at www.autonomictesting.com)
o Catecholamines supine and standing
o Plasma free metanephrines - r/o adrenal dysfunction
o Daily > 1.5 liters of fluids
o Daily 8 grams of sodium (2.5 gram of sodium half a teaspoon salt)
o Exercise
o We talked about Antabus
o EMG/NCS

From third page on Autonomic Testing:
Testing takes about an hour. Following test are usually done:
1. Deep breathing
2. Valsalva maneuver
3. Tilt table test
4. Skin biopsy"

...end of provided summary report

EMG has been scheduled for Jan 16, 2020 at a remote facility much closer to RI, and the above testing to be done back in Boston in February due to back log and testing done only two days per week.

I stay on my lyme meds of Malarone (recently replaced Alinia), Biaxin, Bactrim DS, and Nystatin and supplements; and my list of new heart meds.

That makes sense! Did you use a lot of antibiotics in the past?

dcd2103 said...
I should add that there is a chapter on POTS/dysautonomia in Richard Horowitz' Why Cant I Get Better where he discusses small fiber neuropathy. I'll repeat what he says here:

"When my patients with chronic neurological lyme disease complain of tingling, numbness, or burning sensations in the extremities, a small percentage will come back positive for ******antiganglioside antibodie*****, confirming an autoimmune process is overlapping their bacterial, viral, and parasitic infections. these patients often require IVIG therapy to help with their acquired autoimmune neuropathy. In Dr. Youngers published work, sustained subjective and objective neurological improvement was seen in his patients following this type of treatment.
.

Interesting > "antiganglioside antibodies", which are associated with Guillain-Barré.

Girlie - Every Neurologist and Physiatrist Ive seen were a complete waste of time. They had zero drive to diagnose or think out of their safe easy "box" of rocks. It blows me away when people stumble across one with some effort to actually do their job.

Typical rubber mallet stuff, and walk on your heals BS. Got an EMG twice which came out normal even when I could hardly feel a pencil in my hand, much less hold or write with it without the "dropssies".

Last one I tried four years ago had some personal or maybe even health issues that obviously needed addressing , looked homeless and even stunk from five feet away. This was a Dr. It was one very weird appt. At least he didn't say lyme is fake like the one before him. Errrrr.....

Post Edited (astroman) : 11/21/2019 9:18:17 PM (GMT-7)

dcd2103 said...
Astroman, thats true. I really believe that when IVIG is indicated, its pretty obvious.

IVIG is used when you have an autoimmune disease. Not inflammation or lingering lyme effects or what have you. It is used in a very specific scenario, when your body is stuck in a runaway humoral response where its creating autoantibodies against itself, and when this happens it becomes a disease that really is its own thing, caused by but separate from the lyme, and it's usually *very* severe.

Preaching to the chior on autoimmune (ha ha). Just came back from the immunology/infusion clinic. I have an autoimmune Hashimoto which was worse in the past, and a few other things that come and go, . Autoimmune is not necessarily very severe, remember here are many types, only a few kill you. Sometimes diet can change it, Ive had some documented/tested success with this. That said, Anyone with ANY autoimmune owes it to themselves to get food testing. You only live once.

IVIG's first main use and intent from the places that do this (IVIG centers) is for very low immune systems, mostly immune compromised kids born that way.. Prob is, from my regional experience, the few IVIG centers there are have their own Drs too (who dont think out of the box) and only use it for its first intent, not autoimmune or lyme. I have low immune cells and immunoglogulins (possibly permanent immune damage from lyme), but since Im not "sick" they will not try this.

Using IVIG for lyme or autoimmune related is a second thought brought on by different Drs, not Drs at Infusion IVIG centers. I suspect some people travel long distance to get this done and covered by insurnace possiblly by LLMD's who have some connection or deal with and infussion center. I dont think insurance will pay if its not from and Infusion center. Infussion at an LLMD clinic?- insirance would most likely laugh the whole way. Then is $10-20K out of your pocket for just one treatment good for 4-6 weeks. Wish that were not the case.

You take one tablet a day, at bedtime, so would be $70/month. I've heard people say it works, but some people claim that it caused flares at first.

One more question. Have you looked into mold? Mold tends to make people toxic and highly sensitive, which it sounds like you are since any treatment seems to cause worse problems.

Good point girlie. Most people take a compounded dosage of 2.5 - 4mg. My dr prescribed 3mg, but i havent filled it yet, trying not to rock the boat by introducing too many things at once

I spoke with Dr Peter Novak over the phone yesterday for his DSF prognosis:

Phone Consult 4/8/20 at 10:30am with Peter Novak. All blood work taken in November was normal except for elevated Tryptase. He asked about allergies, which I have no known except against fall golden rod and ragweed, and all foods were OK. He recommended seeing an allergist and/or Rhymatologist for gene and other testing, and there is treatment for high tryptase (I will do more research). My EMG with Dr Johnson on February 6 was normal, and no follow-up needed.

He next commented that my blood flow should be re-done and a return trip to Boston was needed later. He commented that my bone density was high and they got a poor reading. I didn’t really understand what he was leading up to and his accent combined with a phone consult was difficult to comprehend, need to further discuss with LLMD. After thinking this thru upon reviewing the following on-line report later in the evening, he may have detected very poor blood flow in my brain during the tilt table testing, which could be consistent with my long term brain fog issues.

His on-line report follows:
Novak, Peter, MD, PhD - 04/08/2020 10:00 AM EDT
Impression:
1. Elevated tryptase, can be seeing in hereditary alpha tryptasemia
- f/u with Dr. Castells/Giannetti

2. No evidence of small fiber neuropathy on skin biopsy

3. Mild dysautonomia on the testing.

4. Chronic Lyme disease versus post treatment Lyme disease syndrome (PTLDS)
- on antabus

Recommendations:
· Repeat the autonomic testing - only tilt with flow study
· Daily > 1.5 liter of fluids
· Daily > 8 gram of sodium (2.5 gram of sodium = half a teaspoon salt)
· Exercise

AUTONOMIC NEUROLOGY CONSULT NOTE
This visit was conducted over the TELEPHONE.

He is on disulfiram, not sure if it is helping.
EMG-> normal

Autonomic testing interpretation: Abnormal study.The results are consistent with:
1. No evidence of small fiber neuropathy on skin biopsy or sudomotor testing.
2. Mild parasympathetic and sympathetic dysfunction. There was no evidence of orthostatic hypotension, a marker of more advanced autonomic failure.
3. Absent cerebral blood flow velocity (CBFv) is likely due to small temporal bone window.
4. Respiratory functions were normal.

My conclusions... I guess IVIG treatment has been eliminated, and not sure if I'll do anymore follow-up at this time.

Has anyone ever heard about Tryptase levels ??? Please chime in

Thanks all....

His list of blood work done last November was most likely meant to screen out most common inflammatory issues based on my sx background for the SFN referral and Chronic Lyme history. At least now I can scratch IVIG off my possible future treatment paths. I'll just focus on staying on DSF for another 3 months, or as long as I can get refills. My take is that Lyme and/or Bart has really caused some permanent brain issues and an early Althymers (sp?) diagnosis is in the cards.

Thanks for chiming in

Wow! So glad this thread popped up. Since I joined I have been researching everything on my main complaint - burning soles of feet while always having ice cold feet.

Of course, I have many other medical complaints, but this neuropathy in fingers and feet and in particular the burning sensation is very painful. Some days worse than others, but it really limits mobility. I was originally thinking it was from my Bart, but everything I have read about that says that Bart “sole pain” is usually worse in the morning. For me, it doesn’t seem quite as bad in the morning but wow it sure gets worse by evening and throbbing when first go to bed.

Also get the prickling sensations (mostly after prickling type headaches I get prickling zaps in weird random places), numbness in fingers and feet, and of course the lightheadedness and severe brain fog. The severe foot sole pain is what finally drove me to finally get tested at ArminLabs for chronic Lyme (positive), having had negative Elisa tests.

Sure glad this thread came up now. Thanks - I gotta try to think this thru now...

HoleInMyHead - one thing I always mention is body fitness rolling- on a firm foam fitness roller and lacross balls.

What does this do? Unlike regular stretching (which does minimal), this forces circulation. Circulation helps healing, like everything here it takes time. So might as well make some use of that time. Those more advanced can learn nerve massage. "Body workers" know this, but its over Drs heads for some reason.

Its free to do on your own, so IMO all here with limb/sensation issues should learn it. you-tube has way more stuff like this than usual- thank covid-19 for the you-tube fitness explosion.

This is best done before bed, or else you need to do twice as much in the AM just to move.

As far as other exercise, this should be done first. And no, Yoga is not better than muscle rolling. If anything, this should be done before yoga. Yoga done on a "cold stiff and numb lymie" can cause further skeletal problems.