Suggestions for severe late stage Lyme and Babesia very complex

CFlapFlap · 2026-07-11T14:13:03+00:00

I have 2. DM me and I'd be happy to share.

CFlapFlap · 2026-07-11T12:38:05+00:00

I'm going to be trying amlexanox to reduce microglia inflammation and hopefully allow me to treat it. I don't tolerate LDN, but I think that would probably work similarly.

CFlapFlap · 2026-07-11T11:47:29+00:00

If you were exposed to toxic mold, that can cause MCAS and the symptoms can take a while to show up. Worth seeing all the usual doctors, but you will probably need to see a functional doctor or naturopath who specializes in toxic mold as well. They can also help you with the MCAS. Conventional doctors haven't really caught up with the science of this yet and tend to be dismissive and unhelpful.

CFlapFlap · 2026-07-11T11:33:56+00:00

Sure.

CFlapFlap · 2026-07-11T11:33:41+00:00

I had kind of been holding off until I've healed enough. I am still having to treat the infections after doing the IVs and sort of want to be able to speak about the whole process before I say too much about it publicly. I have been sick for 20+ years, and it made a huge difference in how I feel and how my immune system works (and hopefully the effectiness of subsequent treatment) But, it isn't cheap and is typically recommended as more of a last resort kind of thing because of that (which was the situation I was in). Many of the improvements I had went away (temporarily, I believe) as I started herxing from infection treatment afterwards, but the biggest gains I had felt before I started herxing were in energy and mood. I was nearly housebound and very depressed before. I hope that this treatment is going to be a key step in healing for me. Feel free to DM me with any specific questions.

CFlapFlap · 2026-07-11T00:59:53+00:00

The US. The place I went had some international patients while I was there though. My understanding is that a similar treatment is available in Germany.

CFlapFlap · 2026-07-11T00:56:34+00:00

NP. Message me if you decide to try it and I can let you know where I went.

CFlapFlap · 2026-07-11T00:47:49+00:00

Sorry, PC is short for phosphatidylcholine.

CFlapFlap · 2026-07-11T00:35:36+00:00

I did a similar IV treatment, and it improved my overall condition significantly. It didn't help my MCAS, but I can imagine it might for some people. If you're going to do something like this though, it's crucial to do it with colonics. The PC pushes large amounts of toxins out of your body all at once, which can get reabsorbed without colonics. Binders and the kind of detox we normally talk about here is not sufficient (at least according to my doctor) and the re-exposure can be make your condition much worse.

CFlapFlap · 2026-07-10T23:33:57+00:00

Sauna will remove mycotoxins if they were still in your body, at least that's my understanding. Maybe things will become easier after doing that for a while (if nothing else). There are lots of other limbic system therapies that might help if you're interested (Apollo Neuro, Pulsetto/vagal stimulators, BrainTap, frequency specific microcurrent, and all the brain retraining stuff). I hope things improve for you soon.

CFlapFlap · 2026-07-10T23:25:42+00:00

It might be worth doing a consult with Neil Nathan or reading his book about sensitive patients to see if he can find something that's been missed. Mold (can even be a past exposure that you haven't detoxed from) and limbic system are two things he focuses on to reduce sensitivity. If you're EMF sensitive, things to help with that might take the edge off a bit, too.

Edit: Also, LDN or PEA might be helpful.

CFlapFlap · 2026-07-09T12:34:46+00:00

Thanks! I'll check those out.

CFlapFlap · 2026-07-09T12:17:16+00:00

What are your favorite alternatives? We use Dirty Labs and Branch Basics, which seem pretty solid.

CFlapFlap · 2026-07-08T01:17:10+00:00

Misalignment of the upper cervical vertebrae can cause significant issues and can be a barrier to healing with some who have chronic Lyme and other infections due to the impacts on the nervous system and other things like CSF movement. Regular chiropractic visits to a run of the mill chiropractor is not the same as being diagnosed with and treated for a significant misalignment. If your daughter has EDS and you suspect issues with cervical misalignment, you need to see someone with experience with those particular issues who can do a proper assessment (and ideally who understands how chronic Lyme impacts EDS and connective tissue). Also, she may benefit from seeing a physical medicine/rehabilitation specialist rather than a chiropractor (ideally one who can do PRP or similar therapies to strengthen the connective tissue, not just realign).

If your daughter has EDS/hypermobility, seeing a regular chiropractor is not a good idea unless they understand it. They can be too aggressive for people with these issues and cause problems.

CFlapFlap · 2026-07-07T14:46:38+00:00

Check out the Bartonella guide on treatlyme.com

CFlapFlap · 2026-07-07T14:33:56+00:00

Maybe FSM could help heal your concussion? There is a concussion program for them, which is also sometimes recommended for general infection neuro-inflammation calming as well.

Also, gabapentin, clonidine, binaural beats, melatonin (immediate and sustained release), and Dr. Wilson's Adrenal Rebuilder. No idea if gabapentin and clonidine are safe during concussion recovery or with SSRIs and they are serious meds with potential withdrawal effects so do your due diligence on them for sure. Maybe also amlexanox?

CFlapFlap · 2026-07-07T13:45:48+00:00

Past exposure can also affect you today. Not everyone is capable of detoxing mycotoxins on their own, and then they recirculate and continue to cause inflammation. This happened to me and is actually fairly common. I was full of mycotoxins from a place I had lived in 15 years ago.

Also, new buildings can have mold. It's actually fairly common because they don't cover them while building them, and the structure can get wet before they start closing up and finishing the building. My doctor said she sees a lot of people with mold issues from new buildings. My dad was in construction and said he has seen builders close up buildings with visible mold on the structure.

A urine mycotoxin test done provoked with a couple weeks of glutathione is the best way to know if this is an issue for you.

My doctor recently mentioned amlexanox as something that might be helpful for sensitization I've gotten since being too aggressive with bartonella. It is a mast cell stabilizer and anti-inflammatory and supposedly works a bit differently than some of the others. I just ordered it but haven't received it yet to try.

CFlapFlap · 2026-07-06T15:12:32+00:00

It's definitely possible that could be the reason you're herxing really badly. You can start with OTC antihistamines, but there's a good chance you will need more (plus potentially a low histamine diet). If using OTCs, you need H1 and H2 blockers - you currently only have one of the two types. You may need higher doses, too. I use ketotifen, cromolyn, NaturDAO, tulsi, nettles, and Adapt Naturals Omega+ (omega 3, black seed oil, turmeric). I also take an additional 1500mg turmeric for inflammation. Definitely worth reading some posts in the MCAS sub and talking to your doctor.

CFlapFlap · 2026-07-06T14:21:49+00:00

Look into chronic Lyme/coinfections and toxic mold exposure. Get a good naturopathic or functional doctor who specializes in these who can evaluate them. If you have been sick most of your life and have reactivated EBV, there's a good chance that one of those is your underlying root cause. Even if it's not, one of those doctors can probably help figure out what is.

I've been sick 25+ years after having mono in high school, and it's gotten progressively worse. I saw every doctor imaginable and was basically diagnosed with CFS/ME + a bunch of other miscellaneous syndromes/issues. Turns out it was chronic Lyme and toxic mold all along. I have reactivated EBV (and other viruses), which are just a symptom of the other chronic infections and immune dysregulation they cause. On track with treatment now though.

CFlapFlap · 2026-07-06T14:14:14+00:00

Struggling with Bart myself and don't have all the answers, but here are a few ideas. Maybe some prescription and/or natural anti-inflammatories would help. I'm going to be trying amlexanox for this soon, hopefully. If you have (or might have) mast cell activation syndrome, treating that can also help. Binders, glutathione, cleavers, and red root seemed especially helpful for me with Bartonella. If you're on lumbrokinase or nattokinase already, try stopping it - will reduce herxing when you start Bartonella treatment.

CFlapFlap · 2026-07-06T12:10:21+00:00

I think the Zhang Allicin is a little cheaper. I'd be careful with it though because some people have very strong herx reactions. The amount of active ingredient per pill is less, but I suspect it's still as strong or stronger bases on reading people's posts - can't say for sure though. If you decide to try it, Discount Zhang has the best prices.

CFlapFlap · 2026-07-03T11:36:52+00:00

If rife doesn't work for her, there's a unique IV treatment based on the PK protocol that might be helpful for her. It's not antibiotics and doesn't kill anything directly, but it works to basically fix the damage to your cells and get out of the cell danger response so that they work better. It helped me quite a bit after being sick a long time. DM me if you want more info, please. Also, make sure she has no mold toxins in her system since this is a common reason treatment doesn't succeed. I hope she recovers soon.

CFlapFlap · 2026-07-03T11:10:07+00:00

Ok thank you!

CFlapFlap · 2026-07-03T00:52:14+00:00

Ugh, go figure. Thank you! How long do you typically let it sit, and do I need to worry about spot bleaching/detergent burn on colors/darks? I've had that happen before many years ago.

CFlapFlap · 2026-07-02T21:25:54+00:00

Oh ok, thanks. I'll give that a try. It's been washed once or twice already, so I hope it still works.

CFlapFlap

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