I am doing a trial of cholestyramine for detox, and would be interested in how others have done with this med.
Posted by burnbitter (Member # 7088) on :
quote: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.
seemed like it helped with herx symptoms slightly... no side effects, impossible to take 4 doses spaced properly from food and meds.
Posted by tickedntx (Member # 5660) on :
What is proper spacing from food and meds?
Posted by riversinger (Member # 4851) on :
I've been trying it as well. I'm on week five. I've seen a significant decrease in my pain levels, but I also left a very toxic environment during that time.
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.
Oops. Thanks, guys. Really glad I asked. I've been taking it WITH meds. Fortunately, this is only Day 1 !!
Posted by mjbucuk (Member # 843) on :
Did you use actos first?
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).
By the way, it was recommended that if you have babesia... to continue mepron while you are doing the questran.
Posted by tickedntx (Member # 5660) on :
Hey MJ:
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.
Suzanne
Posted by Shar (Member # 2619) on :
I did a clinical study on Questran in '99 when I was first diagnosed with Lyme. I was on IV doxy and flagil, and I was doing hyberbaric oxygen treatments. I stayed on the med 4x a day for 10 weeks. I was so constipated and uncomfortable. I did not notice any improvement with my symptoms. The trial results were similar across the board and there were about 50 of us. I also gained about 15 lbs.
Posted by tickedntx (Member # 5660) on :
Thanks, Shar. I had heard that some LLMD's had stopped using it because patients had not gotten results and had miserable side effects.
I wanted to try this, though, because someone I spoke with told me that she and a number of other people she knows, mostly people with environmental illness though she herself has Lyme, have benefited greatly from it.
I'm interested to hear more stories and get more info on how best to take it.
[ 05. September 2005, 02:57 PM: Message edited by: tickedntx ]
Posted by riversinger (Member # 4851) on :
Interesting. I'm taking the CSM because I had a 3rd bad mold exposure, and decided I didn't want to take Sporanox for another 8 months, because of how toxic it is.
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.
[This message has been edited by riversinger (edited 31 August 2005).]
Posted by WildCondor on :
Questran works really well for me. You can take 4 packets a day. Its hard to space them out with meds too. Make sure you drink alot of water with it. It can aggravate hemmorhoids if you have any of those. Other than that is is great for binding up toxins and stopping diarrhea. It helps me!!!
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
Posted by riversinger (Member # 4851) on :
I forgot! My CSM is compounded. It has no sugar. Instead, it has stevia, plus some things to keep it from being so constipating. Magnesium, ducosate, and guafenisen. But people have done OK on other types that aren't as fancy.
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!
The kind I have is sweetened (orange). Do you know why it is better not to use this kind?
[ 05. September 2005, 02:58 PM: Message edited by: tickedntx ]
Posted by Corgilla (Member # 4066) on :
Hi ticked,
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.
Corgilla
Posted by tickedntx (Member # 5660) on :
I am not understanding what people mean when they say that the sweetened kind is "not good".
Is it that some people have a problem with the particular sweetener that is used?
Is this CSM less potent when the sweetener is used?
Posted by breathwork (Member # 567) on :
The LITE version contains aspartame as a sweetener. Aspartame is a neurotoxin, so is clearly not a good thing for us lymies. Aspartame is also called Nutrasweet and Equal.
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.
Even the soft drink companies are coming around. Coke is offering Diet Coke sweetened only with Splenda now.
Posted by tickedntx (Member # 5660) on :
Thanks, breathwork.
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.
Posted by riversinger (Member # 4851) on :
As breathwork said, aspartame is a neurotoxin, and not good for anybody. So the LITE version of Questran is not good.
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.
Yes, thank you; I understand now. I don't have CSM "Lite". I don't have problems with sucrose, so I should be ok.
Posted by Areneli (Member # 6740) on :
I used it 3 times a day initially. It helped me a lot for numbness of hands and feet - like a miracle drug.
Posted by riversinger (Member # 4851) on :
tickedntx,
I hope you do well on it!
Posted by tickedntx (Member # 5660) on :
Thank you, river. My sx are primarily neuro, so it seems like the removal of NEUROtoxins would be a good thing! :-)
The person who recommended that I try this spoke of cognitive improvement. I would love to regain control of my brain!
Posted by tickedntx (Member # 5660) on :
riversinger wrote: >> The timing the pharmacist told me is to take any medications one hour before or two hours after the cholestyramine
I was told that CSM needs to be taken one hour before meds, or two hours after.
[ 05. September 2005, 02:59 PM: Message edited by: tickedntx ]
Posted by Corgilla (Member # 4066) on :
Hi,
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,
Corgilla
Posted by riversinger (Member # 4851) on :
It must be a difference of opinion in how it works. This is how it was explained to me by the pharmacist, who works with a lot of people using it for neurotoxins.
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:
quote:Upon taking cholestyramine you must wait 30 minutes before eating any food and 2 hours before taking any medication, especially hormone medication.
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.
But you should always take your meds the way your doc tells you to do it. There may be reasons they want you to do it that we don't know. And there may be reasons we are doing it that don't fit for you.
Posted by riversinger (Member # 4851) on :
quote: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.
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.
Thank you for this clarification. I will check with my source. Perhaps if we know the source of the information and the reasons behind the recommendation to take CSM first, people can decide what makes the most sense for them.
[ 05. September 2005, 03:01 PM: Message edited by: tickedntx ]
Posted by mjbucuk (Member # 843) on :
actos was to be taken prior to starting your questran protocol ... in order to lessen the 'intensification rxn' (likened to a herxheimer.
Posted by tickedntx (Member # 5660) on :
Hi MJ:
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.
Not sure what this might mean. Not a lot of toxicity?
Posted by tjtighe (Member # 4057) on :
I thought CSM would kill me. It made me so nauseous. Had it compounded ala Dr. S. Was supposed to stayon it for 3 months. Hung in there for 2 months, 3 days. I think it cleared my brain a little.
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.
tj
Posted by Starphoenix (Member # 2402) on :
I didn't have a response. I took it for up to four doses a day for five months. Just my experience.
Steph
Posted by mjbucuk (Member # 843) on :
Suzanne, wondering if you had taken the online VCS test prior to deciding that you should do questran?
Tim no longer tests positive on that vision test. Tim did test positive just prior to taking questran... (and he took questran for abt 8 wks).
Posted by tickedntx (Member # 5660) on :
Hi mj:
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?
Suzanne
Posted by mjbucuk (Member # 843) on :
wish I could tell you... these days, I feel like anything is worth a try!
Posted by riversinger (Member # 4851) on :
According to my converstaion with Dr. S, he uses the VCS, leptin, VEGF, and MMP-9 tests to evaluate whether the CSM is needed, whether it is working, and when to stop. All of those levels will indicate acute toxin exposure, and as levels come back to normal, they show improvement.
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.
Many thanks for this. It certainly helps when there are tests that can identify need (or not) and monitor progress.
I will discuss these with doc and see what she recommends.
Posted by SuZ-Q (Member # 5903) on :
My daughter started taking cholestyramine about 3 months ago. We saw the most dramatic improvement we had seen in quite a while. Her fever had been hovering between 101 and 102 for months, but after about 8 weeks on the CSM it had come down to just under 100.
We visited our LLMD about 2 weeks ago and she has had us stop the CSM for now. Symptoms have already increased. Increased pain and fever (back up to almost 101).
We get ours through a compounding pharmacy. It is usually sweetened there with stevia, but daughter does not like stevia, so they just leave the sweeteners out.
If her symptoms continue to increase, we may have to see about resuming use.
Hope you see improvement with use of CSM. Good Luck! Suzy
Posted by tickedntx (Member # 5660) on :
SuZ-Q:
Thank you for sharing your daughter's experience. So far I am feeling worse, but it could be the CSM or the switch from BiaxinXL to Ketek or too much energy exerted helping friends prepare for a move or (di)stress over watching the Katrina aftermath and furiously emailing people to donate and contribute to animal rescue efforts or ... who knows...
I don't have pain or fever, but am hoping that the CSM will help with fatigue and brain fog.
I guess I'll just have to be patient! :-)
Posted by SuZ-Q (Member # 5903) on :
If I remember correctly, we did see a bit of a herx initially, but with continued use came the improvements. Hopefully, this will be the case with you.
Our daughter also started Ketek shortly after starting the cholestyramine, but she is still on the Ketek, but not the cholestyramine and she is not doing as well. It may be coincidental, but I do attribute the improvement to the cholestryramine.
Hang in there!! Keeping my fingers crossed that it will start to work as well for you as for us.
Posted by tickedntx (Member # 5660) on :
Thank you for the support, Suz. I normally don't mind feeling like $&%*, but I had wanted to assist with some of the Katrina relief efforts (many evacuees here in Austin) and have not felt well enough to do it. There will be plenty of opportunities later, though, I'm sure.
Posted by borealis (Member # 7866) on :
does anyone have a link for an online VCS test? i looked but they all seemed to be ads for buying tests for clinics...
thanks
borealis
Posted by Foggy (Member # 1584) on :
Didn't help me at all and it corked me up something fierce.
Posted by tickedntx (Member # 5660) on :
Oddly, I haven't had that problem, even a bit the opposite.
I am drinking about 90 oz. of water/day, and I take each dose of CSM with 8 oz. of juice. I also drink 1 tbsp of Natural Calm (magnesium) in boiling water/day. (Of course, I wait for the water to cool a bit before imbibing...) Perhaps one or all of these are making a difference in this regard.
For anyone interested in trying Natural Calm (which is supposed to be the most highly absorbable), vitacost.com has a great price. The 16oz. size costs about $18-19, which is less than what many places are charging for the 8oz. size. They don't have all the flavors, though, at least not the orange, so I ordered sweet lemon and we'll see how that tastes when I run out of my current batch.
Posted by Limping Lily (Member # 5099) on :
This stuff works fairly well, but cause major constipation , and will rob your body of vitamins & minerals, especially fat soluble ones. My sx seemed to abate a little while on 2x a day, but I didn't stay on it for long.In my opinion, the discomfort outweighed the benefits of toxin clearance. Posted by riversinger (Member # 4851) on :
People who are having trouble with "clogging" can help that problem by taking extra magnesium or Vitamin C. The CSM I am taking is compounded with extra things to make it less constipating. They add stevia to sweeten, but also magnesium, duccosate, and guafensin.
Lots of water is essential also. Since the neurotoxins are being bound up and passed out, if you get constipated, it seems like the whole process won't work. They will just sit there, and maybe even get reabsorbed.
Posted by tickedntx (Member # 5660) on :
Limping Lily: Just wanted to say that I love your screen name. My mind immeidately went to "Waltzing Matilda", and now I can't get that [bleep] song out of my head.
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!
these days, I feel like anything is worth a try!
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