Lyme/ Bartonella Treatment

I would go see a rheumatologist ASAP. This sounds very similar to how my autoimmune issues started, especially if you’re seeing no reaction to your Lyme treatment. Have a whole workup done. Have you had any markers checked? Positive Ana? What do your wbc/RBC levels look like?

Hi Patient166 - Welcome to the forum.
Before shutting the door on bartonella - consider trying Rifampin or Rifabutin plus a second antibiotic if you haven’t already.(minocycline/Omnicef/azithromycin are some options)
See what your LLMD says.

Patient166 said...
Thanks girlie! Some of my symptoms are definitely point to bartonella (like the pain on the soles of my feet). I’ve been on rifampin and minocycle. I had a small herx that lasted about a day on the rifampin. I’m a little nervous about adding in a handful of antibiotics again since it didn’t work the first time and it may only hurt my immune system more.

Fair enough.

How long did you give the Rifampin before stopping?

I was on Rifampin a couple months before stopping. Although I know some people are on antibiotics for a lot longer before stopping so maybe I wasn’t on long enough?

Yes. Exposure to toxic mold can cause hair loss. Symptoms of bartonella and mold can overlap significantly, as they affect the same cytokine pathways. You can also have both mold and bartonella.

You mentioned symptoms that came when you returned home from Germany. Did you feel better while you were away from your house? Did you have any time between the end of hyperthermia and the return home where you felt better?

If the feeling worse occurred at the point you got home, then mold would be even more suspect.

Freeze-dried stinging nettles, quercetin, bromelain, and DAO are helpful supplements for MCAS, and there also are mast cell stabilizer drugs like cromolyn sodium that can help. I really do stress diet, though. Are you familiar with which foods are high in histamine? Many are quite healthy and clean. Do you eat anything fermented at all, like yogurt, kombucha, miso, sauerkraut, tempeh, alcohol? All incredibly high in histamine. Very ripe raspberries and bananas I react to as well. Some react to leftovers, citrus, tomatoes.... Once I switched to a low-histamine diet, I never had brain fog again. But of course people's triggers vary. Being hot or cold, exercise, showers, stress, particulates in the air, any allergens....

Mold can follow you on your mattress, pillow, and other belongings. It's also pretty common, sadly, so once you are sensitized to it, you might react to a lot of places. (I learned this while house hunting - spent a fortune testing potential houses and discovered they all were going to require mold remediation!) You also could be reacting to past exposure, still stored in your body. Might be worth having the Shoemaker panel of tests and the Great Plains mycotoxin test panel, just to rule it out. But I hear your point.

I don't understand the theory that Lyme being weakened would make Bartonella flare. Seems to me these are not polite infections that take turns, and that a system taxed by one infection would have symptoms of the others. Maybe they just mean you are noticing Bartonella symptoms more now that you're not distracted by Lyme? What makes them think that the symptoms you describe are Bartonella now and not still from Lyme? I'm not saying this is wrong, just curious about it as an idea.

There was a thread on here not long ago about hair loss. I have a non-Lyme friend who loses hair purely from stress. I'm glad to hear that your thyroid and adrenal hormones are okay, but what about your reproductive hormones? Those being off can cause hair loss as well. The symptoms that make us look different can be especially hard to process sometimes.

It does seem like you are taking some heavy hitters for antimicrobial treatment. Your suspicion about not making progress makes sense to me. How long have you been on the disulfiram and Beyond Balance and Methylene Blue? If you don't notice anything from those, then I really do suggest looking into heavy metals. Have you had any dental work done? Eat a lot of ocean fish? Any lead paint or other exposure? Also do try reading Neil Nathan's Toxic. The book offers several possibilities for why folks with Lyme don't make progress.

Good luck!!!

Sounds like you have tried a lot and considered a lot! Maybe someone else will have more ideas for you, but I wanted to weigh back in and say, for what it's worth, it sounds like you are doing all the right things. You're bound to hit upon the thing that makes a difference one of these days! Hang in there.

There are many posts here on MCAS. Just use the search feature. That’s a new one I had to start dealing with this past summer after a bad mold exposure. I take Xyzal at night, Neuroprotek, AllerDHQ, Vit C. It helped me stabilize. I tried DAO supplement when food reactions were happening. Couldn’t tell if it did anything. I have cromolyn sodium but haven’t used it yet.
I started antifungals after the bad mold exposure. Did Fluconazole for 2 months with no herxing and some improvement. Then added Nystatin and herxed on that with noticeable improvement. Still need to get my diet right. For me, mold triggered the MCAS and Nystatin has helped the most in reducing internal mold/fungal issues driving many of my symptoms (chemical sensitivities, joint pain, muscle fatigue, cognitive impairment, toxin pain).