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DD13 was making good progress on IV treatment for co-infections and took a sudden turn for the worst 18 days ago. Her most severe and debilitating symptom is an unrelenting frontal headache. Nothing touches the headache - we've tried various OTC pain meds, Rx muscle relaxants, massage, chiropractic, epsom salt baths, Vitamin C/Magnesium/B Vitamin infusion.

 

Spoke with LLMD today and had a lightbulb moment....

 

The headache started after she visited a friend's house who just had their old bathroom completely remodeled. My daughter reported that the old bathroom was covered in mold. I'm thinking a big mold exposure hit her.

 

So it's the most likely theory, although we are going to do a CT scan of brain and sinuses to rule other out causes.

 

LLMD prescribed Cholestyramine for biotoxin exposure. I read Shoemaker's protocol on the use of this, but I'd like some feedback from you smart people out there on the Lyme front line....

 

Thanks in advance.

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We used it. DS17 had to stop and start twice before he could tolerate it. I used it straight for 3 months. I really think it helped both of us, but it is quite strong, and side effects could be some bone loss (significant for me, because I already have osteoporosis.) Make sure you supplement with magnesium, calcium and vit. d3.

 

OK...just started back on it.

Edited by tpotter
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I wanted to ammend my first post on this. I just saw my doctor again and I'm about to start on full-dose cholestyramine. He is now saying to take it 3 hours or more after eating and then wait at least an hour before eating and then wait another 1/2 hour before taking supplements. Not sure why he changed his recommendation - maybe because I had been on a small dose twice a day and will not be on full dose 4 times a day.

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My LLMD also said to take it on an empty stomach, because then it only binds to the toxins, and not to the good stuff.

 

That may also be why he said to wait to take the supplements.

 

I'm starting to take it around 11:00 a.m. (about 4 hours after eating breakfast and 1 hour at least before lunch), and then again at bedtime.

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  • 4 weeks later...

cholestyramine was a life saver for me during herxes. It really made a difference. I took two doses per day on the really bad days. On the days I didn't take it I would sleep at least 3 hours in the afternoon and wake feeling just as tired. On the days I took it, I didn't even need a nap.

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My LLMD also said to take it on an empty stomach, because then it only binds to the toxins, and not to the good stuff.

 

That may also be why he said to wait to take the supplements.

 

I'm starting to take it around 11:00 a.m. (about 4 hours after eating breakfast and 1 hour at least before lunch), and then again at bedtime.

Cholestyramine does NOT bind only to toxins. CSM is a bile binding salt. It literally binds to the bile and removes the bile directly. The liver then has to make new clean bile to replace what CSM just removed. Otherwise bile keeps recycling itself and mold stays in bile. The only way toxins get removed is if the toxins are in the bile. Mold toxins are fat soluble and therefore easily dissolved in cholesterol. That is why CSM works so well on mold. CSM was designed to remove cholesterol and it just so happens mold is in solution with cholesterol. It remains to be proven that bacterial neurotoxins are found in the cholesterol/bile. My thought is that neurotoxins from bacteria have to be removed via the immune system via macrophages.

Red

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