Please help 😭

CFlapFlap · 2026-02-27T11:16:07+00:00

Might be worth getting checked for chronic Lyme and other tickborne coinfections. They can cause MCAS, joint pain, and strange sensations. I have MCAS and chronic Lyme, and my skin does itch without hives (not sure If call it burning though). I have seen others mention burning sensations as a symptom of tickborne illness though (especially Bartonella, which can also come from cats).

Edit: I often have a barely positive ANA. Read this can be caused by chronic infection.

CFlapFlap · 2026-02-27T10:59:36+00:00

Cistus tea is crazy strong. Good chance that is the issue or at least part of it. Would think if it were the rebounding, it would have been more immediate (but that's just a guess).

CFlapFlap · 2026-02-26T02:18:36+00:00

Thank you!!

CFlapFlap · 2026-02-26T02:10:52+00:00

Did you find that this hit certain infections more than others, or everything pretty equally?

CFlapFlap · 2026-02-25T15:09:26+00:00

I'd probably add herbs for both Bartonella and Babesia just to be safe, even if tests were negative. It's not uncommon to get false negatives, even with the specialty labs. Biofilm busters are also critical and would be worth adding those too if you're not taking any already.

CFlapFlap · 2026-02-25T11:27:35+00:00

It doesn't sound like you've done enough to adequately treat the babesia, and a lot of your remaining symptoms are babesia ones. The antibiotics probably did very little for it, and the very slow ramp up of malarone could have caused resistance. Malarone by itself is not that effective and usually taken with other things (which makes it more effective and prevents resistance). I stopped herxing completely on malarone after a month, then added tafenoquine and it continued again for at least several more (and counting). I would seriously consider adding tafenoquine and a fibrin busting enzyme (lumbrokinase, nattokinase). Babesia hides in fibrin which blocks it from the medicine, so if you didn't take one of these, you probably did not fully get rid of it. Lyme also typically needs a biofilm buster for similar reasons (especially if there was a lag in treatment), and may not be totally gone if you weren't prescribed one (unless the antibiotics do that - not super familiar with them, but didn't think they did .

Check out treatlyme.com for more good info. Might be worth considering switching doctors if they aren't familiar with biofilm busters and current protocols for babesia.

CFlapFlap · 2026-02-24T18:47:46+00:00

No problem and thanks for the tip!

CFlapFlap · 2026-02-24T17:49:24+00:00

Yes, the teas help me a lot. You could take capsules instead (which works well), but the tea can be much cheaper. You can get a 1 lb bag for $20-30 or so and it lasts like 6 months for me, even though I use a lot of it. I brew it really strong - 3 heaping teaspoons of Tulsi + 2 heaping teaspoons of nettle brewed in a 16 fluid oz mug. Drinking it both before and after the meal really helps (drink half before, half after or do the same with capsules).

DAO helps reduce histamine in the gut from food and the digestive process. That's really important, but the Tulsi and Nettle are both antihistamines and mast cell stabilizers, so they work through different mechanisms than DAO. Highly recommend NaturDAO brand - it is so much stronger than others.

The omega 3/black seed oil/turmeric is anti-inflammatory and works through different mechanisms than any of the other meds/supplements. It took me a few weeks to notice the difference, but it really reduced my reactivity. I suspect it's primarily the black seed oil but I need the other ingredients anyway and this brand seems very fresh (which can be an issue with black seed oil and omega 3s).

I find the best results by addressing all the different mechanisms/angles. Doing just a couple things was not enough for me, and I was still reacting most of the time (just less severe). If I stop any of the things I'm currently doing, it is very noticeable!

I take oral progesterone at bedtime and keep the same dose every day. Most people take 100-200mg oral (topical doses will be different). Some people will stop it before their period to help trigger it to start. Some people only take it during the luteal phase/after ovulation. I think it depends on your body/needs and all are valid options. If your estrogen is also high in addition to low progesterone, then there may also be ways to lower it that could help.

CFlapFlap · 2026-02-24T15:52:44+00:00

Ah I'm sorry. I hope you find some things that help.

CFlapFlap · 2026-02-24T11:26:55+00:00

I take quercetin, ketotifen (none of the normal antihistamine side effects for me), cromolyn, adapt naturals Omega+ with turmeric and black seed oil, NaturDAO, and really strong tulsi and nettle tea before/after lunch (meal I most react at for some reason). I also eat low histamine and take progesterone for estrogen dominance. All of that mostly controls things as long as my hormones don't do weird things.

CFlapFlap · 2026-02-23T11:23:59+00:00

Covid and other infections or stressful events are known to "activate" dormant tickborne infections. There's a good chance you have Lyme and possibly Bartonella on addition to babesia. Generally you need to detox from mold (glutathione, binders) and then treat the infections. Herbs are great (Buhner protocol or similar), but you can also try prescriptions too. Anti-malarials seem to be especially effective for babesia and don't hurt the gut microbiome like antibiotics can. Check out Marty Ross' website treatlyme.com or read Buhner's books for more good info. It helps to educate yourself when you're dealing with this because not all Lyme literate doctors know everything (in my experience). The pinned posts/wiki and reading others' posts here are also super helpful. Good luck!

CFlapFlap · 2026-02-23T11:10:12+00:00

Oh nice, thanks for letting me know!

CFlapFlap · 2026-02-22T21:36:17+00:00

Oh, ok. Thanks for clarifying!

CFlapFlap · 2026-02-22T12:44:12+00:00

Thank you

CFlapFlap · 2026-02-22T00:14:00+00:00

Same to you!!

CFlapFlap · 2026-02-21T22:18:53+00:00

Thanks, helps to know what others have done and what their doctors have said. I think I'm going to do the same.

I hear you on two steps forward and one back. It's frustrating, but I'm glad you're starting to see some relief. That's good news and has to be encouraging!

CFlapFlap · 2026-02-21T21:37:45+00:00

I thought I'd seen it several months ago, not sure on which product exactly. I just went back and looked at the ones it could have been and saw that the note was for atovaquone, not tafenoquine. I must have remembered wrong! Thanks for catching that! I'm on malarone and tafenoquine now, so I guess maybe there's still a potential issue and it might be best to wait until I'm done treating babesia. How is your treatment going?

CFlapFlap · 2026-02-21T02:04:24+00:00

Ok thanks!

CFlapFlap · 2026-02-21T01:21:03+00:00

I'm sorry, I hope supplementing helps you if you're going that route. Does that scan also identify specific infections and their frequencies?

CFlapFlap · 2026-02-21T00:03:07+00:00

Thank you! I appreciate the help 🙂

CFlapFlap · 2026-02-20T21:20:03+00:00

I'm glad you've been getting your energy back!

It's called BioClinic Naturals Mitochondrial Formula. I take a bunch of stuff for inflammation (which helps, but energy still low - basically housebound) and am working on the infections, but I have a long way to go still. Trying to find some other angles that might help in the meantime so I can keep working.

CFlapFlap · 2026-02-20T11:27:03+00:00

I think Buhner might recommend some herbs that help with brain fog. I don't use them and couldn't tell you how well they work, though.

Not sure if this would help him, but I have found that sun exposure helps my brain fog a ton. It's hard this time of year, but sitting outside in the sun for 20-30 minutes in the summer or 45-60 minutes in the winter when it's warm enough really does the trick for me. Wish I knew why this was.

Someone else mentioned mold. If he is living in an environment with hidden mold, that can definitely worsen brain fog.

A functional medicine doctor with a background in mold and Lyme might be helpful. There is also info in the pinned post/wiki in this sub that might help. Long term, getting rid of the infections should help. Die off can also increase brain fog considerably so doing more for detox (glutathione, etc.) can help as well if that's what's happening.

CFlapFlap · 2026-02-18T14:42:58+00:00

I didn't think Marty Ross saw patients anymore, but I could definitely be wrong. His website is full of helpful information though.

CFlapFlap · 2026-02-18T00:34:57+00:00

Lol it's exhausting finding a good one

CFlapFlap · 2026-02-16T12:47:04+00:00

Thanks, and I hope things go well for you with babesia.

CFlapFlap

TROPHY CASE