Chronic Lyme Disease and nerve damage

Burning/buzzing/vibrations etc can all be Bartonella - it is for me.

Thanks Astro. I’ll check it out and try adding that to my routine. My GP gave me a referral to by ortho insoles, and a RX for foot cream....lol. They just can’t help themselves - try to fix the symptoms instead of the problem.

Girlie - yeah, I suspect bart but this SFN with antiganglioside antibodies (earlier in the thread) starts making sense to me.

Decreased blood flow to the brain - so that’s why I can’t remember one thing while walking from one room to another...

Tryptase is a test used in diagnosing MCAS. My major symptom of MCAS is brain fog, and it also can cause feeling of prickliness and exacerbate nerve pain. Have you ruled out MCAS?

Claritin would not necessarily make any difference for MCAS, so that should not be an assurance that you don't have it. If you don't think that your symptoms flare with exposure to high-histamine foods and histamine-increasing activities and exposures, then of course I will take your word for it that it's not MCAS! Just thought I'd mention that since it's a cause of high tryptase.

I'm supposed to have a phone appointment with Novak next week. It's my first appointment with him, and obviously there will be no testing via phone. Do you think it's worthwhile to have the appointment? I feel like I will spend the whole time explaining my history and he'll just say he can't help without doing tests. He seems VERY big on tests, from the handful of folks I know who have seen him. You're actually the first person I have heard of him not diagnosing with SFN and putting on a medication for POTS. I'd be grateful to hear more about your impressions of him.

dcd - yup, after reading your posts on this thread I figure that SFN is right. Started after my tick bite with tingling and numbness in one foot, then a hand, then change to the other foot, etc. - rotating through them all - now set in all the extremities including some mighty bad coordination. Now this burning on the soles has built up over time. But I have never had any joint pain. I’ll have to see about approaching a neurologist.

It always amazes me how some folks here find neurologists who actually do things without you pulling their teeth first.

Everyone I met (only about five though) were absolutely worthless.

Saraeli, I'll look more into MCAS so thanks for the tip about the Tryptase testing and relationship. I only went to Peter Novak based on his research on SFN in chronic lyme patients. He's tied in with a handful of his peers at Harvard looking into this link. I'm kind of glad he found no evidence of SFN with me since IVIG was out of my current pay bracket anyway. My LLMD said he has helped several of her patients he's taken on referral. I've since heard he stopped seeing new patients about a year ago.

I know most of my lingering neuro issues appear mostly Bart related, but if this is as good as it gets so be at this point.

later all... hope this is a short day.

orbiting:
SFN is just beginning to be recognized. It is a disease of the small fibers. It can be caused by many different things, but often its an infectious/post-infectious autoimmune/autoinflammatory issue.

Holeinmyhead has burning in his/her hands and feet, with temperature changes (autonomics). Textbook small fiber. The small fibers are sensory nerves. If its not their small fibers sensing the burning, then what do you think is sensing it, genius? They literally have SFN by definition, you clown. Bartonella and small fiber are not mutually exclusive...bartonella can cause small fiber. The problem is that often just treating the bart wont cure it, you need to shut down the immune response, and the way you do that is with IVIG.

I've seen 3-4 peopl on here who I strongly felt had small fiber, and I suggested it to them. It pains me that people like you steer them away from getting a proper diagnosis and treatment. When a couple of people who I thought didnt have SFN asked, Girlie I remember in particular, I told them it wasnt.

WORST CASE, worst possible case if they follow my advice and I’m wrong, holeinmyhead sees a NEUROLOGIST for their NEUROPATHY and gets checked out. Thats the worst possible outcome. And your advice to the person with neuropathy is....dont see a neurologist, they are waste of time.

Post Edited (dcd2103) : 4/10/2020 7:50:51 PM (GMT-6)

SFN can be caused by Bartonella or other infections. It's not a one-or-the-other issue. SFN can be a symptom of Bartonella, if you will, and it can be a progressive disease that persists even after the infection that triggered it is gone. The nervous system is tricky. Just like if you have migraines as a Lyme symptom, it's okay still to treat the migraines while you work on the Lyme. You can have anemia from Babesia, but it's still okay to treat the anemia while you work on the Babesia. People post here every day about treatment for specific conditions caused by tick-borne diseases - MCAS, joint pain, immune dysfunction, insomnia, POTS, CFS/ME, GERD, ulcers, vertigo, etc. - and SFN can be added to that list. Yes, treat the infections. But you should support the systems of the body that evidently need support, too.

Also, it's not cool to deride someone for conceiving of their own illness in a way that differs from how it seems to you.

The rules of this site are pretty simple in terms of not being outright inflammatory, so as a moderator I now have to do some editing. It's so important to be able to disagree, debate, and make mistakes - that's the only way we figure things out sometimes! Let's do our best to discuss things diplomatically, even when emotions run high and things feel very personal.

Would a scared person that's new to Lyme find this thread online and think this forum is a safe place to post and look for help? Every time you post here, please keep those people in mind. If we want to be there for people and we want the world to take us seriously, then we need to behave respectfully and keep things productive.

Personally, I've always believed in supporting the individual "body systems" and said exactly that here starting years ago. It lowers the overall stress on the body and is key to healing- as long as your actually helping and not just covering individual symptoms. That said, there is something to pain reduction, even if it is covering symptoms. You cant do stuff in pain very well.

After decades of this and other health issues probably tied to it and genes, I barley functioned as time went on. What did my LLMD/functional MD suggest? Treat the infection and individual body systems since I had been this way for possibly three decades. It worked. Much faster than others thought possible. I certainly wish I met a nuero who might have sped up the nerve symptoms. I looked for a good one before and during lyme treatment, with no luck. Relied on my own remedies and time.

I've met a few people who've been in "eradication mode" for as long as ten years while not doing much else, they wernt improving much. Time for them to do more. "Just treat the infection and all that will go away" - its not always that simple.

An acute infection is way different than a chronic one with possible damaging results. How many years is one willing to wait? Anyone with chronic illness should do as much as they can (*while not going broke*) to regain a decent life. The pain, wasted time, lost income, and lost opportunities is just to much.

Gotcha, thanks for the clarification. That is fair. Reasons aside, I broke the rules

Someone posted that they didn’t think I had SFN - but I don’t recall who it was - and why I don’t fit the diagnosis.
I was happy to hear that - but I don’t know what symptom/presentation I don’t have that negates the disgnosis.
Anyone?

I do have nerve pain - daily but not constantly all day long.