WalkingbyFaith said...
Aerose91 said...
I lost my insurance years ago so no, i only have medicaid. Whats the "regular stuff?" Can you get cholestramine over the counter? I thought it was rx only
Medicaid doesn't cover Rx at all?
Regular CSM is Rx, but in a 9g scoop, which is the full dose, only 4g are CSM. The rest is junk, including sugar substances. The pure CSM can only be gotten through a couple of custom compounding pharmacies, and I've heard it costs an arm and a leg. Woodland Hills Pharmacy is one. I just emailed them to ask the cost. I'll post when I get a response.
You could call around local pharmacies and ask what the price would be for self-pay. CSM has been around a long time. It's probably not very expensive.
Here's the thing. For CIRS, CSM is taken at the front end of treatment after removing yourself from biotoxin exposure. As far as you know, you've done that. Shoemaker also advises starting high dose fish oil for a month before CSM. He also advises a no amylose diet. This is to reduce inflammation. Then CSM is started. Some only take it for a month or two. It depends on the toxin load and how sensitive the patient is and how well they tolerate it.
Those who can't tolerate it are usually those with Lyme or MARCONS or ongoing exposure to biotoxins.
- In your case, I believe you said bartonella is the only infection you seem to be dealing with. (Did you have any positive bands in the Western blot or did you do any of Buhner's Lyme protocol?)
- Have you ever been tested for MARCONS (deep swab in the nose)?
- You removed yourself from mold exposure (mycotoxin exposure is still a possibility, IMO, but is harder to identify).
Best case scenario - you tolerate it well and only need it a month or so.
Worst case scenario - it makes symptoms unbearably worse and you have to stop. If this happens, based on what I understand about
your situation, I would get tested for MARCONS at that point. If no MARCONS, reevaluate possible mycotoxin exposure from your possessions, especially anything you had before you left your moldy environment. See if you can tolerate CSM better away from your stuff.
If your try CSM at all, I would recommend starting at greatly reduced doses to see how you respond. BEWARE that the effects are cumulative and may not be felt for a few days. Normal dosing is 4 times a day - 30 minutes before breakfast, lunch, and dinner, and bedtime. Timing is important. Eat fat in your meals. It is supposed to grab the toxins so they don't get recycled in the bile.
From my experience, it seems to have a 3-4 hour half life. By the time I got up to 4 doses a day, I would feel some relief after taking it, but would feel the effects wear off and start feeling an increase in symptoms before time for the next dose.
If I had it to do over again, I would have started with TINY doses 4 times a day and increased by TINY increments on a weekly basis to see if that would make it tolerable. It probably would have.
If you google CIRS cholestyramine, you should find Shoemaker's full instructions.Most of my doctors have been out of state and Medicaid doesn't cover script
s called in by an out of state doc. Maybe that's just unique to connecticut, I'm not sure.
Man, i have a hell of a story. After 5 years of this being undiagnosed my brain was so bad it was torturous, so i got rid of all my belongings, remediated my truck, built a tent out of canvas and went to live off the grid in the desert. I told myself i was going to heal out there or that desert would be my final resting place. A few days after getting there was the first time i saw any reduction in my brain symptoms and it was fantastic. I then did all my detoxing therapies (liver cleanses, IR saunas, methylation) but saw no improvement from them. I also never saw any further improvement after the initial bump but i knew that it had to be possible. That's why the past 3 years I've been living in my truck, moving around the country as seasons change to maintain a good environment.
With my new diagnosis of mast cell activation that could explain my sensitivities but i do still wonder if biotoxins are a central issue with me. Even Dr M, who I'm seeing now said my GSTP1 mutations will cause high brain toxicity and that could also activate mast cells.
I figured trialing cholestrymine can't hurt since i have a few characteristics of CIRS- low MSH, HLA mutation, and a few others. I def have the environment taken care of so i am just curious to see if i react at all to the binder. If i do it at least gives me another piece of the puzzle.