Lack of Herx

Most of my symptoms look like brain inflammation, PANDAS/PANS , autoimmune encephalitis, no blood flow to brain. I figured lyme/ bart is the trigger for this as I tested positive. Over the past year I've done ozone, rifampin, bactrim, minocycline, oil of oregano, methelyne blue, doxycycline, cryptolepis, beyond balance herbs for bartonella, babesia, borrelia and recently parasite herbs.

I don't think I've ever had a significant herx from any of these treatments. I always basically the feel the same, or possibly slightly worse but then I never have improvements. Some of these treatments I've done for about 6 months before deciding its just financially not worth it, the antibiotics maybe for about 3 months. I realize these things take time, but when I literally feel no difference after several months, I don't see how something is going to suddenly change with the same treatment.

There are only 2 things that have helped me: mold avoidance and initially moving resulted in euphoria for about a week or two. Mold for me clearly triggers brain inflammation. The other thing is doxycycline, but I don't think its because its an antibiotic but rather because it helps reduce IL6 and autoimmunity.

There are doctors who treat autoimmunity at the same time as lyme. One that comes to mind is elena frid in NYC. I believe she uses IVIG, a drug called rituximab, and other doctors that treat autoimmune encephalitis use other treatments. I am just wondering if there is something else that needs to be done in conjunction for severe brain issues. I know most people here think that long term antibiotics are needed, and I don't disagree, but my response to some of the "heavy hitter" drugs has been basically nothing.

I have tried a supplement called "SBI protect" which is apparently similar to IVIG with no response. I am trying LDN recently as well. I'm curious to hear if anyone has any experience with needing to address autoimmune issues alongside the infections. Or any PANDAS/ PANS stories. I realize a lot of the time this is just lyme but I probably fall into this label with my brain on fire and mood swings.

I was “rabbit hunting” last night, and I came across a post where you mentioned you had seen Dr Ackerley. What did she think about your brain inflammation and lack of response to treatment?

Did you ever do a protocol using Mepron plus one or two abx to target Babesia?


If not - I would give it a try for a few months… just to be sure.

lyme guy16, I wonder if your infections are so stuck in biofilms that antibiotics simply don't touch them and hence you don't feel anything?

This was sort of the case for me. Never herxed much on antibiotics, but had strong herxes on disulfiram (which breaks biofilms too) and some milder herxes on some herbs. Then when I tried antibiotics + lumbrokinase (biofilm buster) I started getting the same strong herxes I had on disulfiram.

I'd be really interested to know how you respond to a strong biofilm buster like lumbrokinase or similar. Have you tried that?

I'm not saying this is the case for everyone by the way, just what happened to me.