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Originally posted by triathlongal:
I did and herxed very badly on it. My body cannot handle that stuff....Best of luck on it! TG

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Oh no! I'm starting that Sept 1st!! I don't want to herx anymore!! So scared!! Did you herx right away? What should I watch out for? the bucket I just bought was like $200!! So more money down the toilet if this doesn't work! Sigh...
 

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Posted by one4islands (Member # 28187) on :
 
My dr. recommended it to take as well, but after a lot of research I did not feel comfortable taking it.

I have heard that you need to drink plenty of fluids while on it.
 

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Posted by Lymetoo (Member # 743) on :
 
Yes, many take it for neurotoxin removal. I hated it with a passion... or at least my stomach did.
 

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Posted by scorpiogirl (Member # 31907) on :
 
Lymetoo was it helpful to you though?? I hate ALL my meds/suplements/herbs but if they help then I will continue taking them (kicking and screaming the whole way of course!)

I have the dreaded genotype so we know my body cannot detox well. This is why my LLMD wants me to try this and HOPE for the best. I guess if suffering short term would help kick my Lyme and Companies then I will try my best. But I don't want to suffer needlessly!
 

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Posted by searching4truth (Member # 28481) on :
 
I take it, and it helps a lot. I did not herx from it, and it helps clear my head when I am herxing. No problems
 

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Posted by Lymetoo (Member # 743) on :
 
I felt better for 10 days and that was it.
 

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Posted by desertlily (Member # 13894) on :
 
scorpiogirl - Like you I have that "gene" problem and have a big problem with detoxing and for that reason my LLMD wanted to try it just like yours did. In MY case it was a disaster, I immediately started herxing badly. Had to go off of it fairly quickly, just couldn't tolerate it. So, those of us with this problem, I'm kind of wondering if it can really help.
 

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Posted by susieq2 (Member # 30451) on :
 
I've heard of herxing from this, but have never understood why that would be. Herxing is from bacterial die-off and the toxins produced, no?
Cholestyramine binds toxins, so how would it cause a herx? Just trying to understand since I just started on it today. Caused a bit of nausea until I ate is all.
 

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Posted by marinel (Member # 33240) on :
 
I'm another of the dreaded genotypes--but cholestyramine was one of the few things I've ever tried that did NOT cause a herx reaction. My doctor had me go onto it very slowly (starting with 1/2 teaspoon per day in water). I have been able to get up to 1 teaspoon per day, but never was able to get up to the recommended 3 teaspoons (actually, 1 teaspoon 3 times per day). This was because my digestive system wouldn't tolerate it at those levels.

It seems to help a little bit, but I still test positive on Dr. S's visual test for neurotoxins.

I suspect I'm still positive because: 1) I'm not able to take the full recommended dose, and 2) I'm dealing with both lyme AND mold neurotoxins, as my immune system does not recognize mold and cannot eliminate it.

Hope this helps.
 

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Posted by Mo (Member # 2863) on :
 
i have come to realize that many intolerable neuro symptoms come from the gut, a direct pathway it seems to the brain.

usually this comes for me when i have in any way moved toxins of any sort thru the small intestines. leaky gut.

when this happens, taking 2 capsules of activated charcoal will abate all of the symptoms within half an hour.

so to combat this, and when i'm on a heavy medication or cleansing regimine, i make sure and clear mid-day of all vitamins and medications and take a bentonite clay and psyllium shake and an activated charcoal capsule.

i've had cleanse periods where i did more of the clay, but not when taking medications/herbs for infection or parasites, because you do not want to get clogged up during those regimens. i make sure and take extra magnesium, vitamin c, and sometimes herbs or aloe to keep things moving.
and drink allot of clear, hot fluids.

years ago when i learned about cholestramine neurotoxins were more of a mystery to me.
i think treating them is simpler than we think.
i also think treating them effectively makes you feel immediately better, never to herx on a good toxin binder.

even chlorella is proven to release toxins after a period of time that a sluggish bowel would not hold as long.

another interesting product i have used is algin, or alginate. *modified alginate complex
in a product called pectasol chelation complex.
the algin is excellent for metal concerns.

i use the clay and activated charcoal because it is broader spectrum. clay will absorb toxins as well as infection in the gut. i see doc. k. now recommends it. it's cost effective, used for centuries for these purposes, and it works.

and.. it makes a great facial.

mo
 

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Posted by karenl (Member # 17753) on :
 
Yes, I took tons of it, the compounded without fillers. No problem if you start on very low dose. In the end I took 18x600mg.
 

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Posted by Lauralyme (Member # 15021) on :
 
It greatly cleared my head, but I had to stop it as it was so severely constipating
 

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Posted by desertlily (Member # 13894) on :
 
Mo, how exactly to you make your bentonite and psyllium shake? I have a lot of neuro symptoms when I herx and I've been wanting to look into trying something to deal with the toxins, die-off, whatever... I for sure want to try the activated charcoal, as I've known others that have had success with that. Thanks!
 

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Posted by 4Seasons (Member # 14601) on :
 
I have been on three packets per day of Cholestyramine (CSM) for about a year. We had a mold exposure in our house and I have the genetic inability to detox mold and Lyme biotoxins, so CSM
is by far the best binder for me.

I have not had any problems to speak of on it. I take each dose with plenty of water, on an empty stomach, 30 minutes before eating.

I take powdered magnesium (Calm) at night to prevent constipation.

I like the taste of the brand made by Par best. I know it has some sugar, but I don't use Nutrasweet and I watch my sugar elsewhere. Another brand had a gross texture.

I know of others who couldn't tolerate it for one reason or another, but also some who, like me, tolerate it well. Good luck!
 

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Posted by cleo (Member # 6646) on :
 
Do you have mycoplasma or chlamydia co infections? Those plus lyme to a point use cholesterol as food and trafficing. If you take thier food away they starve or at very least get stressed.
Cholestyramine caused a herx for me at first. I lowered and started slower and now can take 2 pkgs. without a problem.
 

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Posted by triathlongal (Member # 31684) on :
 
I have tested positive for that genotype as well and had black mold throughout my house..ergg..

Anyway..I do not know exactly why I herx on this stuff but I do. I get an increase in all my neuro symptoms and I feel like a human slug. Headache, flashing lights in vision, pins and needles, numbness, feather sensations on my legs etc....

I find I can tolerate Cilantro/Chlorella and I also like Brown Seaweed Extract.IR Sauna also works very well for me as long as I am taking a binder.

Maybe there is an inactive ingrediant in the Cholest. that I react to? Either way I stay away from it
 

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Posted by marinel (Member # 33240) on :
 
For those of you who have had an increase in neuro symptoms while on Cholestyramine, are you taking the kind with NutraSweet? NutraSweet itself is an "excitotoxin" and can cause neuro (MS-type) symptoms.

My doctor made SURE that I was taking the version of Cholestyramine that contains only sucrose as a sweetener. Admittedly, sugar is not the best thing in the world, but in small doses it sure beats the toxicity of NutraSweet!

Also, for those of you who are taking bentonite for a binder, are you taking lots of probiotics? My understanding is that clay and charcoal can soak up beneficial gut flora.
 

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Posted by jamie2012 (Member # 33502) on :
 
I've only taken it twice so far beacuse of the gross texture....it tastes like you're drinking powder. I also just noticed that it does have nutra sweet....
I think I'll ask my doctor about chlorella....Thanks
 

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Posted by imagine2 (Member # 3136) on :
 
Dr. S also uses Welchol for people that have a hard time with cholestyramine. It's much easier to handle.

Maybe you could ask your dr. for welchol?
 

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Posted by susieq2 (Member # 30451) on :
 
I tried the Par brand generic first and it was gross, but tolerable. Then I got the straight powder from a compounding pharmacy and it stuck in my throat. I felt like I was going to choke, so I watered it way down and that didn't help. Anyone else have this happen? Is there something you can mix it in to prevent this? I never have trouble swallowing gross things and can take up to 5 big capsules in 1 swallow without trouble, but this was too much for me.
 

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