posted
Further to my earlier thread on CSM in which we were discussing timing for taking it:
In that discussion, I think we concluded that CSM needs to be taken one hour after or two hours before meds.
In the insert that came with my recent rx, it says to take it one hour after or FOUR HOURS BEFORE meds.
Put another way, after taking meds, wait one hour before taking CSM. After taking CSM, wait four hours before taking meds.
This makes it a pain, and seemingly impossible, to take it four times per day. I've created a meds schedule which starts at 8am and ends at midnight and I can only get in three doses.
And this doesn't even take into consideration when you can eat! CSM insert instructs to wait 30 minutes to eat after taking it, but doesn't say how long not to eat before taking it.
This stuff better [bleep] well work, because it's a lot of effort just to take it! I now take meds eight times per day.
-------------------- 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
Yes, it is very difficult to get the timing to work!
Truthfully, most days I only manage 2-3 doses of the stuff. For the very reason you say. I have so many meds that have to be taken on an empty stomach. I mean, how many empty stomachs can one girl have?
Patricia Kane, who uses this protocol sometimes, claims it works using just one dose per day. Dr. S insists that you need 4 doses per day. I just do the best I can.
I will say, I had slowed down when starting new meds to treat the Staph colonization, just because of the timing issue. I don't know if I hit a big herx, or if it was because I wasn't keeping up with the CSM, but my pain started ramping up again, big time.
Now, after a week, I've hit the CSM again, and the pain levels are way down again. This is the first time I ever had a classic herx, where it hits, escalates previous symptoms, and then goes away, and I feel better.
So, for me at least, it is definitely worth it!
Did you do any of the testing to see if you fit the profile of someone who needs it? I so perfectly fit the picture, it has helped stick with it. Plus, the description of how things work in Mold Warriors was so right on, it really convinced me.
Now, with the improvements I am feeling, I am pretty happy. I don't know if you will get the same benefits, but I sure hope so!
I did not do any of the testing. When I asked doc about it, she said that the only person who was seeing any correlation was Dr. S.
Oh, I did do the VCS (I think that is what it's called?) testing on Dr. S's web site, probably two years ago, and did pretty well. When I emailed them to ask about it, I was told that I had done too well for them to think they could do anything for me.
Since it's only ten bucks a month for me, I'm willing to see if I fit the profile by trying it.
Suzanne
-------------------- 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
I use 1.5 sachets two times a day. Works very well. I wouldn't be able to squeeze 4 doses. But 1.5 times a day equals 3 doses so I am happy.
Posts: 98 | From BC | Registered: Feb 2005
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posted
Are you confident that increased dose/lower frequency doesn't change effectiveness?
You've got me thinking about two sachets twice/day...
Anything to cut back on the number of times/day I'm taking meds.
-------------------- 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)
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posted
You see the Texas NP, right?
I don't know for sure about the other doctors and what they see with the tests. My one doctor has been doing some of the testing for a while, but has not followed up, or even been very consistent with the protocols, so it is hard to say whether he finds the testing consistent. He is just starting to learn more about it, and follow through more.
My secondary doc is really interested, but has only started pursuing this. So, I am an experiment of one, in so far as how the tests correlate to the the response to treatment. Of course, Dr. S says they do, but I can only tell you my experience. So far, everything he has predicted from my sysmptoms has come up, and so far everything he has recommended for treatment has helped.
I know others have tried his protocols and not had such good luck. Whether it is due to individual difference, or not following the protocol properly, its hard to tell. I just know I seem to have hit the jackpot so far. But of course, time will tell the final story.
It might be worth doing the VCS, just to see what comes up. You can buy just one test the first time, and then decide if you want to get any more.
Keep me updated on how you do. I'm really interested to find out how many it helps.
I did the VCS test a couple of years ago and did well. Maybe I'll do it again. I hadn't been on abx when I first did it, since I did not yet have a Lyme dx, just CFS.
Suzanne
-------------------- 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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Areneli
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posted
In my case I can tell exactly how well cholestyramine works because I have a symptom that monitors level of biotoxin. This is tingling of my tongue. More tingling equals more toxin, at least in my case.
Typically my tingling increases about 90 min after each meal that reflects the time needed for ejection of bile and re-absorption of bile back to the circulatory system. Later tingling disappears again as liver pick up biotoxin back for storage.
If I take cholestyramine before meal than I still experience some tongue tingling but much less. It is a sign that some toxin escapes action of cholestyramine. If I take two sachets of cholestyramine than there is no tingling at all after a meal. So I also conclude that one sachet of cholestyramine is an inadequate dose and 1.5 or 2 sachets per dose are more appropriate.
Sometimes, however, cholestyramine irritates my stomach. So take more only if you can.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
That's an interestng symptom, Areneli, but seemingly handy as a way to measure toxicity.
Sounds like I should give the two-at-a-time half-as-often approach a try and see what happens.
Suzanne
-------------------- 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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Foggy
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Member # 1584
posted
Anyone know if mixing CSM with Metamucil will effect it's absorbtion? My LLMD has it compunded with Magnesium for this reason. I'm waiting to finish my jar to re-order with Mg.
Lets face it folks, this stuff binds you up tighter than a drum. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Areneli
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posted
My only side effect of Questran is irritated stomach.Antiacids helps if that happens.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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What gets compounded with magnesium: CSM or Metamucil?
Areneli:
Can you describe what you mean by irritated stomach? I get chest pain why doc says sounds like stomach problems, though it started before CSM.
Thanks, Suzanne
-------------------- 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
Also, I've been told that Dr. S says that taking CSM with pineapple juice eliminates the GI problems. Even if it doesn't... YUM!
-------------------- 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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Foggy
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posted
Tx, CSM w/Mg
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
That's interesting. I thought I had read here that, since CSM binds with everything, other meds should not be taken with it. I assumed that also meant supps.
I use "Natural Calm" magnesium which I'm told is the most absorbable. It is taken like tea, in boiled/very hot water. Can CSM be taken this way?
Is the idea behind compounding CSM with magnesium to alleviate constipation?
Suzanne
-------------------- 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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