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Originally posted by tickedntx:
I am doing a trial of cholestyramine for detox, and would be interested in how others have done with this med.

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The timing the pharmacist told me is to take any medications one hour before or two hours after the cholestyramine. I don't worry so much about food. I just eat about a half hour after taking the CSM. Eating triggers the gall bladder to release bile, which is what you want.

But I don't get all four doses in most days. Still seems to be helping.

Tim used questran a few years ago. It helped get rid of his headache at that time (it was his last remaining symptom at that point).

No, have never used Actos. Are you supposed to use that first? What is it?

Fortunately, I don't think I have Babesia. I did do four rounds of Mepron and Zithromax last summer, just in case, though.

So I wasn't taking the CSM just for Lyme, though I have that as well. I've been on antibiotics for two years before trying the CSM. I know Dr. S. doesn't tend to treat Lyme for very long.

I also didn't take the Actos first, because my leptin levels are comparitively low. I've been on a low carb diet for two years, which may have brought the leptin down, but the Actos is to control blood sugar, insulin, and leptin, so no need.

It was still kind of rough the first couple of weeks. I was told to eat plenty of fat, because my leptin is low.

Anyway, interesting to hear about the people with environmental problems doing well on it, as that is a big issue for me.

There are a couple other people in our support group giving it a try, and a few are doing well on it. All of them have mold issues.

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Sonoma County Lyme Support
[email protected]

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I have mold issues and am one of the 25% of the population that does not rid toxins properly through the GI tract.

I've been taking CSM for about 6 months now with 1.5 months off. It turned my treatment around.

I was having really bad heart palpatations and skipped heartbeats every time I tried to start an antibiotic. My LLMD tested me for the gene that signifies inability to release toxins and rx'd CSM. No Actos prior for me either.

After about 3 months on the CSM and cleaning up of my environment, I was able to start abx again. I've even gone for 2 months without a Lyme flare.

She told me that it's important to take the CSM that comes in single dose packets that doesn't have artificial sweetener.

I am now taking it twice a day as supportive therapy. Four times a day was a bit difficult and I had to take psylium capsules while on that dose to keep the pipes moving. Twice a day doesn't seem to cause the same "clogging" effect.

She also said that it's best to take 1 packet for 2 days then 2 for another 2 days and so on in order to acclimatize yourself.

Hope this helps,

Corgilla, I'm excited to hear how well you are doing! I fit in that genetic population, too, that can't get rid of the toxins. I have all the hormonal issues, including lowered MSH (say non existent) and am really hoping this will make a difference, so it's good to hear how much it is helping you!

Mine has sucrose in it and is orange flavored. It's the "lite" kind that is not good. I don't know which artificial sweetener it has but it's not a good one.

Stevia is probably the only artificial sweetener that toxin-susceptible people can deal with.

I'll also add that a good sweat from exercise is more detoxifying than any of the other things I've tried. I feel and look best when I do heavy sweating from physical activity. I wouldn't have gotten to the point where I could do that without the CSM though.

Is it that some people have a problem with the particular sweetener that is used?

Stevia is all natural. I grow it in my garden actually. It is not sold as a sweetener, but as a food supplement. Works really well.

I also use Splenda, which is not nearly as nasty as aspartame or saccharine...

Heck I would use saccharine, or the "pink package" long before I would pick up nutrasweet/equal/aspartame.

The stuff I have containts sucrose, so that should be ok until it's gone. I am mixing it in fruit juice, so if I continue beyond this first container, I'll make sure to get the "plain" version.

I am taking a compounded version of CSM, because I have blood sugar issues, and can't use the sucrose either. The regular Questran, the orange flavor, has sucrose in it. So the one I am taking has no sugar or aspartame, just stevia.

You gotta have something, because cholestyramine resin by itself is major icky!!!! So it is usually sweetened in some way to make it palatable.

Does that explain?

My LLMD told me about the 1 hour before/2 hours after thing and I got confused with it too. I just take anything 2 hours before or after CSM. That way I don't have to get confused about it.

She also said the same thing about food but I've also heard that it doesn't really matter as much as meds.

Good Luck,

The CSM binds with anything in the gut. If you take a med one hour before,on an empty stomach, then in an hour it will be far enough down the GI tract, that it won't bind. But if the CSM is taken first, and is waiting in the gut, it could still bind with the meds, so you need to wait two hours.

Here are the written instuctions I have:

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Upon taking cholestyramine you must wait 30 minutes before eating any food and 2 hours before taking any medication, especially hormone medication.

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I can see the part about taking the meds two hours before the CSM. That would give plenty of clearance. But it makes the timing even harder. But taking meds an hour after doesn't make sense, because it seems too likely the CSM could still be there, especially if you have eaten after taking it. Eating slows clearance of everything.

I take my meds. Wait an hour. Take the CSM. Wait a half hour. Eat breakfast. By then I'm starving! I don't think I could add another hour in there. Besides, it is working OK.

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Originally posted by tickedntx:

My LLNP just told me that this information is you reversed. CSM needs to be taken one hour before meds, or two hours after.

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I just realized that you also wrote that this same LLNP has not had good luck with the CSM. Could this way of Rxing it have anything to do with it? I don't know, but it is a thought.

If it isn't in the gut at the right time, could it be causing more trouble than help? Just something to think about. Maybe you could check with the people that you know who are doing well on it, and see how they are using it. All of this is still so new, it is still up in the air as to how, and when, and for who it will work.

I'd love to hear what you find out, cause not everyone in our group is having results as good as mine, so I'd like to learn more about what might make a difference.

I have taken CSM four times/day for the past two days, after starting with one scoop on Monday night with no adverse response, and am doing fine.

The second time I took it I took only 2 doses--no sweat.

Pulsed the Actos which I don't think I should have taken. When I stopped both, ended up in the ER feeling loopy and pressure on the heart--scary. Everything was fine. Needed several days to recover.

You know, I'd completely forgotten about that test. I took it probably a year and a half ago and scored fine. They told me that based on my results, they probably couldn't offer me anything.

Is that test sufficiently diagnostic for neurotoxins such that if someone tests negative, they are wasting their time with CSM?

Or is the my brain fog sufficient evidence that I might benefit?

All of them were out of line for me. I am seeing my doc on Tues, and will get a script for my first follow up tests, to see how things are going.

If you want to understand more about how all this stuff works, it is worth getting the newest book. Mold Warriors goes into a lot of detail about just how things go out of whack, and what things are used to normalize the body, and why.

His theories have gotten much more complex. He doesn't claim they are the answer for everybody, but it is some pretty interesting info he has put together. It certainly fits what is happening for me. The book addresses more than just mold issues, but also how all biotoxins, including Lyme, can impact some people.

So, to find out for sure, you need more than the VCS tests, though that is one of the basic ones they use. If you do OK on the VCS, it might indicate that you don't have a problem with neurotoxins. I think he said they don't have a very high false failure rate. I'm just not sure how completely accurate the on-line test is.

Yeah, that's how I feel, too... :-)

river:

Many thanks for this. It certainly helps when there are tests that can identify need (or not) and monitor progress.