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Cholestyramine (CSM) Treatment - Elimination of Toxins

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Some of us have HLA DR types that cause our immune system not to recognize mold toxin. As a result, Shoemaker says, the toxins are perpetually reabsorbed into the body rather than eliminated through the stool.

Hi Lisa, great post. I was wondering if you have a brief definition of "HLA DR type"? --- Thanks.

Wayne
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Well tarnation, all this does make a body wonder what can be done. I'll keep pushing forward with methylation first in that case. Thanks!

Wow! :aghhh: Anything that makes MTHFR worse is not going to be an option for me.

It just goes to show (again and very predictably) how different we all are. That some people ARE actually benefited by the cholestyramine is a bit confusing, though. Don't most of us have some major methylation problems?
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
I will go out on a limb, here, Dreambirdie and say I've yet to find anyone here on PR who has tested their DNA and din't find something they needed to address. I'm pretty sure I would have remembered a thread along the lines of "Hey I just did 23andMe and everything looks great!" :) With that said I've not been through all the pages of the Genetic subforum...
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I will go out on a limb, here, Dreambirdie and say I've yet to find anyone here on PR who has tested their DNA and din't find something they needed to address. I'm pretty sure I would have remembered a thread along the lines of "Hey I just did 23andMe and everything looks great!" :) With that said I've not been through all the pages of the Genetic subforum...

Yeah, I imagine that most everyone here is going to have some significant SNPs in regard to their methylation pathways. But... some people who have really "bad" SNPS, can be perfectly healthy. My partner has more polymorphisms than I do, but he has no major health challenges. I recently loaded him up with the necessary supps to make sure it stays that way.
 
Messages
15,786
Yeah, I imagine that most everyone here is going to have some significant SNPs in regard to their methylation pathways.
Pretty much, but there's also the opportunity to run programs to search through 23andMe results for very rare SNPs. This can bring up some interesting results by itself, and also allows for comparing rare results to see if there's commonalities with other ME/CFS patients.
But... some people who have really "bad" SNPS, can be perfectly healthy.
True, and we were all more or less healthy once, despite having the same SNPs that we do know. But also, many of the SNPs listed by Yasko either aren't relevant to the functioning of the genes they're on, or they're reported backwards.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
It is apparently possible to get cholestyramine (CSM) without sugar at a “compounding” pharmacy, such as Hopkington Drug in MA—I believe they sweeten with stevia instead (I don’t know if you can get it “plain”). You still need a prescription, and it’s more expensive than regular CSM.

http://www.rxandhealth.com/

Americas Compounding, (in MA) is where I get mine from. Mine has xylitol in it, which I beleive is ok, doesn't raise blood sugar levels also!

GG
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Zeolite



Thanks much for your post and information Medman. So I guess CSM is synthetic, since it appears to be filled with sugar and nutrisweet. My goodness, how almost unbelievable is that?

I'm with you on the zeolite. I don't know about IP6, but will give it a google. I recently had a zeolite product recommended to me called:

ZeoForce - Zeolite 400 Gram Powder

I'll probably give it a try, as I've been wanting to supplement my current charcoal capsules with something a little more "substantial", especially since I'm experimenting with a number of detoxification regimens.

Thanks again.

Wayne

@Wayne mine is not full of sugar and nutrasweet. Mine has xylitol in it, read on this thread that it is best for mold toxins? Interesting, not sure how much of an issue mold is for me now though.

GG
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
HLA DR is available through LabQuest. You can read more about it on Dr. Ritchie Shoemaker's website, Surviving Mold.

http://www.survivingmold.com/diagnosis/lab-tests

CSM is a drug that (to my understanding) is the equivalent of little pieces of plastic that stick to the toxins with a static electric charge. Supposedly it does not escape the intestines. The commercial versions have sugar or aspartame, plus artificial color. Compounded versions can omit those extra ingredients.

Where did you get yours, GG?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
HLA DR is available through LabQuest. You can read more about it on Dr. Ritchie Shoemaker's website, Surviving Mold.

http://www.survivingmold.com/diagnosis/lab-tests

CSM is a drug that (to my understanding) is the equivalent of little pieces of plastic that stick to the toxins with a static electric charge. Supposedly it does not escape the intestines. The commercial versions have sugar or aspartame, plus artificial color. Compounded versions can omit those extra ingredients.

Where did you get yours, GG?

America's Compounding in Newton, MA

http://accrx.com/

GG
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
HLA DR is available through LabQuest. You can read more about it on Dr. Ritchie Shoemaker's website, Surviving Mold.

http://www.survivingmold.com/diagnosis/lab-tests

CSM is a drug that (to my understanding) is the equivalent of little pieces of plastic that stick to the toxins with a static electric charge. Supposedly it does not escape the intestines. The commercial versions have sugar or aspartame, plus artificial color. Compounded versions can omit those extra ingredients.

Where did you get yours, GG?


I'll probably get that tested next week.

I just started CSM today so we'll see how it goes. That mixed with methylation support, strict diet, and fatty acid therapy.
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Oh, sorry! LabCorp. Quest does not do the tests the way Shoemaker has them set up, last I heard.


My doctor and I are doing a mix of the Patricia Kane Protocol, Shoemaker, Yasko, and some of her own stuff. It's working.

I see her again next week to go over a ton of tests, and I know she wants to get the HLA tested.
 

Aerose91

Senior Member
Messages
1,400
My doctor and I are doing a mix of the Patricia Kane Protocol, Shoemaker, Yasko, and some of her own stuff. It's working.

I see her again next week to go over a ton of tests, and I know she wants to get the HLA tested.

@Soundthealarm21

My doctor wants to start me on the PK protocol as well but I'm not sure if I'll be able to because if the cost. May I ask what it costs for you? And how often are you getting IVs?
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Sorry, I have not been on here in a few days!

Yes it is quite expensive to do the PK protocol. I'm actually on a break from most of it, but still taking the balance oils. I was taking 6 caps of Phosphatidylcholine a day which would average out to $3.60 a day for that. The VSL 3 is quite expensive as well (i'm still doing that) and I take 6 caps of that a day.

Without going into extreme detail and giving wrong figures, I'd put the average (depending on everything you do) at about $200-300 a month. IV work will be much more expensive, but will get the job done quicker. One of my doctors (I use about 3 right now) uses the PK protocol for her husband (Parkinsons) and she said the cost is $125 per IV which is the direct cost because she is a doctor and primary provider.

But currently I'm doing Hyperbaric Oxygen Therapy. Tests finally came back positive for Lyme disease (long suspected it).

I wish you luck with PK protocol, if you're really toxic the detoxification can be quite nasty (reason I stopped) and uncomfortable.
 
Messages
2
@Slaydragon, do you have MTHFR??
I was ready to explore the CSM till I saw the post about how it makes it worse
New to forum and will post more when have energy
 
Messages
24
Location
Seattle
I believe it's a question of when you take it. If you take it with food, then yes, it will absorb nutrients. Having said that, it sounds to me like the referenced article trumped up the MTHFR nature of the problem, because whether you have the SNP or not, failing to absorb those nutrients will cause you problems.

If I understand Shoemaker's suggested use of CSM correctly, it's to be taken apart from food, which would avoid that problem.
 

JAH

Senior Member
Messages
497
Location
Northern California
Cholestyramine has helped me a lot. I've taken it a few times. First time it improved my energy a little. Stopped taking it (it doesn't have any effect after a few weeks or a month), went back on it, and it did nothng. Kind of forgot about it. I had some severe problems this year, and my doctor mentioned trying it again, so I took about a months worth that I had lying around. It helped significantly reduce some severe muscle spasming, gave me a little energy and a little improvement in brain fog.

My doc said take it one month on, one month off. No benefit it more than that. I also take it just once a day.

JAH