Cholestyramine update

So the first few days on CSM I felt eerily WELL, like a level of health I couldn't even recognize anymore, which was great.

Now I'm feeling pretty bad, but I think that's good. I've done a lot of researching and still can't fully understand it but basically I think that once you get rid of a bunch of toxins (which I guess I did in those first couple of days) the toxins come out of hiding (because they're bound to the insulin receptors on fat cells?) and cause a herx. This is DEFINITELY a herx. My joints are all swollen, my limbs are white and freezing, I'm having awful pain everywhere with circulation problems and just a few minutes ago I came out of the bathroom and couldn't find my room (which was like 3 feet away!).

It's still going to be a long road, probably, but this is a good sign. The other day I was just lying in bed and could feel how hard my immune system was fighting...it was pretty amazing. I seemed to have hit a plateau and all of a sudden I'm back to fighting this infection! Yay!

Detoxing really, really is important. The detox baths were helping, but not nearly so much as this. I'd definitely recommend giving it a go if you're having any trouble detoxing. I feel hopeful again :)

luvbugg, I'm sorry you have to be around the mold! It's so frustrating, I know. As it is I'm not sure if my house has mold or not anymore. We get so many floods and everything gets ripped out but you never know. Since I got an air purifier at least the house doesn't smell like mold anymore...but the tiled floor never gets replaced and I feel like there must still be mold under there, plus the regular sources of mold...air conditioners and whatnot...it's not MY house and I'm also broke so I can't just go out and get someone to test the house or anything...so I don't know.

I'm not sure if I have the dreaded gene (sorry to hear you do though!). I had the testing done but I can't understand the results...although I did just find out that I'm not actually ALLERGIC to mold so I guess that's good news.

Does the cholestyramine seem to be helping do you think? Are the joint pain and memory problems worse since starting it? I've been herxing, I guess, like CRAZY since I started, but I mean I can only assume that means it's doing it's job because the only other option is that I have a strange allergy to CSM that causes symptoms identical to a Lyme herx...highly unlikely......

I hope you feel better soon too. I'll keep you posted on my progress...there is no question that I am more full of toxins now than ever before, but like I said it seems like it's a positive thing...

Traveler,

I don't think they're side effects. This is how I felt when I first started aggressive abx treatment...it's what happens when I herx I guess. Supposedly when it binds to toxins and I get rid of them, there's more room for the other toxins to come out and play. Basically the CSM is supposed to give you a herx, so with clearing out some toxins and continually making more (still on abx) I'm under the impression that this is exactly what's supposed to be happening...

hi borderlyme, i had cholesterimine tx in 2002-2003. it was extremely difficult. i had to use fiber in between to keep everything moving. i lost alot of weight. after 8 months, i felt much better. hang in there it will get better. it helps to stay away from carb while on cholest. good luck

talking about toxins. think about it.... we have these toxins in our tissue. when detoxing,,,it moves to our intestines before it is discarded. Cholesterimine tx was horribly difficute but it made me functional again.
Functional for a lymie anyway,LOL

It's definitely been difficult so far and as with everything I still have a long way to go...now I'm getting to the point where I REALLY wish I knew how much longer this whole process is going to take! I mean according to dr shoemakers protocol I'm supposed to be CURED after max 8 weeks but that's only when there's no longer an active infection...I guess I'll keep monitoring that CD 57 and hope it spikes up soon! "

Yes, border. Shoemaker is rather "out there " IMO. People either love him or hate him- no in between. His office is very close to where I live but my llmd I chose is 50 miles away. Just my choice and I respect a lot of S's work. Just wasn't my cup of tea as a treatment doc

Hey border What is the dosage on the colestramine.

also do you take it with anything else?

Anyone whose has taken CSM for Shoemaker protocol. Im just starting it and Im freaking about the GI problems its stirring up. I am not getting a response form my doc yet. But Severe gas, bloating , sever instenstinal pain, got a hive after eating plain chicken,then backed way down and Im having the opposite of cosntipation and pain when i go . I just want to know is this Mold toxins being released or a intolerance??
Last year i did it for a month,and it didn't phase me at all then stopped, cuz I switched doctors

I didn’t have any GI problems from it. It just made all my mold symptoms and chemical sensitivities waaayyy worse. My chemical sensitivities went to sci-fi levels. I was staggering and nearly falling down in the hallway. Had tremors so bad the last night I took it that I thought I was going into shock. Thought I was going to have to get my mother to lay on top of me to stop the shaking. When I thought of shock, I remembered you’re supposed to warm the patient, so I turned the portable heater on, even though I didn’t feel cold. The heat worked, and the tremors stopped.

Each day, I got worse and worse. The last day I was asking my family if I should write out my last will and testament. I thought if it got any worse I was gonna die. I stopped after 11 days. Took about a week for the exacerbated symptoms to get back to baseline.

CSM causes a sort of avalanche of toxins that get released out of the body. I think Neil Nathan recommends tiny doses like once a week for extremely sensitive patients. Wish I had known all that then. My doc didn’t know what to do with me.

walkingbyFaith you should read this:

https://survivingtoxicmold.com/why_cholestyramine_is_a_bad_idea

DIRECT Effects of Cholestyramine
Medication-induced mitochondrial damage and Disease
People with Mitochondrial damage have ONE or MORE of these symptoms:
seizures
poor balance (ataxia)

and this:

LESS COMMON Side Effects of Cholestyramine (more rare but dangerous)
Cholestyramine contains Quaternary ammonium compounds can display a range of health effects, amongst which are mild skin and respiratory irritation up to severe caustic burns on skin and gastrointestinal lining (depending on concentration), gastrointestinal symptoms (e.g., nausea and vomiting), coma, convulsions, hypotension and death.

It says convulsions in the last paragraph too.