What to try next?

Yes. I've been pounding the table on this on this board for a long time. Neurological issues may be triggered by an infection, but they are often immune mediated. The autonomic nervous system gets wound up, the glial cells in the brain and peripheral nerve get up-regulated and begin to release cytokines and inflammatory peptides like glutamate and substance p, which causes pain.

It's not easy to shut off. The best way to treat the buzzing/burning is with IVIG. If you are having numbness and buzzing, it is insane, simply insane, to ignore the immune system and just treat the infection. You should find a good neurologist who can prescribe IVIG. I have all of your symptoms. I've been on it. It does help, although it hasnt gotten rid of my buzzing. For some people it is a miracle. I've come to the conclusion that my autonomic nervous system is extremely damaged and wound up, and its driving the buzzing, and possibly up-regulating the immune systme as well. I plan on goin to the Spero Clinic to address the autonomic damage. In the mean time, ketogenic diet has helped tremendously. There's a source of inflammation coming from my gut. The other thing that helps calm the fire is ketamine infusions. I'm hoping that if i can fix my gut, and calm my autonoimics at spero, all of this will resolve for good. You should read through my old posts.

Also, i have come to realize that anything w/ red-pepper in it flares my neuropathy and buzzing immediately. I'm talking extreme burning after a few pepper flakes. Red pepper has substance p (in the capsaiscin) in it, which is an inflammatory/excitatory neuropeptide directly responsible for simulating the sensory c-fiber nerves. You may want to see if that triggers you. If it does, either avoid it, or there are some people who claim you can shut off the inflammatory loop by flaring yourself on purpose with copious amounts of red pepper until your body is out sub p.

Thank you @dcd2103 for your response! This all makes sense to me. I will say though that I am pretty confident that there is no infection left after all treatment I have done. It seems more and more like you said, a wound up and extremely damaged nervous/immune system- I have had lyme since I was 18, now 30.

I will look into IVIG. How many treatments did you have?
I have tried the keto diet for 3 months with no improvements but going to try carnivore diet because why not?

@ChristianWithLyme yes my LLMD has done some tests for mold and mycotoxins which came back slightly elevated. I treated with cholestyramine. I now live in a new condo and got it tested for mold and there was none.

Hi! You already answered what I was wondering about mold and if you tried CSM to bind toxins.

Did you check for mold in your workplace?

How long did you take CSM? Did you notice any improvements or have worsening of symptoms while on it?

What about Candida or other yeast/mold in the gut? SIBO? Leaky gut?

YourTrueFriend:

I am in a similar situation as you, although I am currently only starting the double-dose dapsone protocol. (I don't have a lot of hope for it, as I feel like I basically need nothing short of a miracle at this point.) I also have very severe fatigue as a symptom.

Personally I am also investigating all other potential illnesses/diseases that could be causing my symptoms. My LLMD is pretty good about this, but there is also another clinic in my area that has a good reputation for doing this. They are focused on ME/CFS, autoimmune diseases, stuff like that.

If you haven't been checked for the things that everyone else has mentioned (SIBO, mold, etc.) you should definitely look into those.

IVIG is interesting, but nobody is going to prescribe it for you unless it is indicated for immunodeficiency, or one of a few other diagnosable conditions.

There are some other more "out there" modalities that you could look into. Hyperthermia, HBOT, SOT, etc.

You would have to weigh the evidence for these (often very limited) against the cost, potential risks, etc.

It definitely sucks. At some point, you must consider that there are many people who would rather live with an incurable disease and wait for new research, then constantly be trying unproven and expensive therapies.

Remember that officially we all have "Post Treatment Lyme Disease", which does not have any recommended treatment. Your symptoms may also overlap with ME/CFS but I can't tell from what you've posted. There are some forums for people with ME/CFS that I have found useful in my journey.

Is this Dr. E. F. or is there another one that you are talking about? I am interested to hear more about it.

Pediatric lyme Dr Charles Ray Jones prescribes IVIG for some of his patients.

He may be retiring soon -

Interesting, well I suppose I stand corrected then. If insurance covers it, I don't see any downside to a trial of IVIG if one has tried all of the other standard treatments already.

As long as you have been sick, you more than likely have a severe nutritional deficiency of cationic substrates like Mg, Mn, Mo, Se, Bo, Li, and possibly Zn. At this point, you probably won't absorb them very well either.

@saraeli yes I just recently started going after the neuroinflamation but only since last week so we'll see if that helps at all. Going from a supplement standpoint and slowly getting active again with yoga everyday- I am pretty de-conditioned after the double dapsone therapy.

It started before, I was very careful while on DSF to avoid any additional neuropathy