posted
For those who have used cholestyramine, how long did it take you to see results?
Do you feel that CSM made you feel worse before it started to make you feel better?
I am asking because I am feeling worse and am inclined to attribute it to the CSM, or at least to an increase from 2 to 4 sachets/day. (I am taking 2 sachets bid, rather than 1 qid.)
FWIW, a couple of years ago, I scored very well on Dr. S's VCS test, and was told that, as a result, there likely wasn't anything they could do for me.
Any suggestions as to how long to give this med a chance to perform as advertised?
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
You can definitely herx on that stuff. I felt pretty good after about 10 days. After a month or so on it, my stomach [or maybe it was my gallbladder] decided it couldn't take it anymore.
I would not overdo it.
I can't figure out why they would tell you that they couldn't do anything for the VCS failure??? That's what CSM is for.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I wrote that I scored well on the test. By this I meant that a high level of toxins was not indicated.
If CSM makes you herx, then I'm herxing. But what is the mechanism?
Herx is the result of the release of endotoxins when you kill off pathogens.
If CSM is being used to remove the toxins, how would that _cause_ herx? Shouldn't it mitigate it, by removing the cause of the herx (endotoxins)?
How long do people recommend sticking out the CSM (at whatever dose) before writing it off as another failed experiment, if it comes to that?
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Suzanne, I was on it for 8 weeks or so.....and YES I FELT LOUSY for 2 weeks.....I had a headache that lasted for 5 days and nothing would touch the pain. My doc even called in a scrip for pain, it didn't help....but after I got over that in about 2 weeks I felt great!!
I got some energy back and my pain went down significantly......But you can't stay on it as I'm sure you know.....it depletes the good stuff too like vitamines and minerals....
I don't know why it feels like a herx other than that all the bad stuff is being pulled into the intestinal track.....Maybe it just stirs up the toxins by moving through your body.....
If you are feeling bad something is going on, can you tell for sure it's from the CSM?.......In my case I could as it was very different. I would say give it 8 weeks and see what happens.
Good Luck!!!!!!!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Suzanne,
I did feel worse the first week or so. Increased headaches, muscle aches, things like that. Shoemaker says that Lyme patients in particular are likley to have herxes because of high leptin and MMP-9. That is why he uses Actos to pretreat.
But personally, I wouldn't use the Actos if you haven't checked those two labs. Actos lowers leptin and MMP-9. If you already have low leptin, like I do, it can cause real trouble, because some leptin is required to stimulate production of the hormone MSH.
If you need it, Actos will decrease inflammation caused by the high MMP-9 and leptin. I think it might also lower TNF alpha. Those are some of the chemistry produced during a hrex.
Also, it is important to be eating enough good quality fats while doing the CSM. I take my CSM in a hot drink with some organic cream, and also eat some fat a half hour after taking it. This stimulates bile release, and also makes sure you replace the fats that the CSM is binding.
Cholesterol is essential for the brain and nerves, so you don't want to get rid of ALL of it, you just want to get rid of the stuff that has neurotoxins bound up, and replace it with good stuff. So Dr. S says to push fats in the first few weeks.
In addition, as the bile gets bound up in the gut, cholesterol is released from other sites in the body to be taken to the liver to produce new bile. Because this cholesterol has neurotoxins in it as well, it can cause herx reactions. But it is the mechanism that gets the toxins out of the body as a whole.
It was about three weeks before I started to notice some symptom improvement.
I also want to say, I'm not sure the double doses are a good idea, even though Dr C has recommended them. From what the two originators of the protocol told me directly, it is better to have a smaller amount of coverage more frequently. That way there is something available to bind the toxins all of the time.
I'm not sure that you release anough bile at one time to take advantage of the double dose. I could be wrong on that, they never said specificall NOT to take double doses, they just emphasized frequency of taking the CSM as being of help. I still am not so good at pulling it off often enough, but it makes sense to me.
posted
Thanks for all the info, guys. You've answered questions I did not even know I had.
Not sure what to think. I was definitely not aware of the need for fats, and will give that a try. I'll also try going back to single doses. I had just been hoping that I could get the number of times each day that I have to break for meds down, even if from nine to seven...
I did CSM for three weeks (was given a sample tin of it) from late August to mid-September, then started again on 9/23. The biggest issue is increased fatigue, which is my primary symptom anyway. I also way overdid it (activity-wise) in September, so I can't be sure that the current problems are due to CSM.
What kind of stuff were you eating to get enough fat, and how much? I am doing some serious dieting, so please don't say ice cream... In the meantime, I'll head to Whole Foods for some organic cream.
Gail, when you say you can't stay on it [long-term], what is the recommended longest amount of time?
Thanks, everyone.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Suzanne,
I've been on a low carb diet now for almost two years. Over that time I've lost 45 pounds, and never been hungry. I eat all the good fats I want to, just no sugar, no grains, very low carbs.
I'm pretty much where I want to be now, so I allow myself slighty more carbs now, but really, I no longer enjoy them much. Mostly I like eating fruit again.
The fats I eat include organic cream, oraganic butter, avocado, organic olive oil, good cheese, nuts and nut butters, occasionally fatty fish like Alaskan salmon or sardines, eggs, fats from quality clean meats. Now, I'm not taking about a half cup of cream to get the CSM down. A teaspoon or so will do. I just don't limit myself if I'm hungry.
You mentioned ice cream? My favorite desert these days is a good quality, full fat, organic yogurt, with frozen cherries, walnuts, and a little stevia to sweeten it. For me, it is better than ice cream! I can't eat really sweet things any more. Your taste changes, slowly but surely, over time.
I do have a craving for chocolate sometimes. Scharffenberger makes a really bitter dark chocolate that I melt down, add a little cream to, and sweeten with stevia, then drop on wax paper to cool. Yum!!!! And full of heart healthy antioxidents. These kind of treats keep me going.
And, BTW, my cholesterol is just fine, thank you. By keeping my blood sugar and insulin low with eating low carb, my body is able to process the good fats the way they are intended. I have been eating this high fat diet for ten years with no trouble. Your milage may vary.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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