posted
For me, it just gradually got worse and worse. You may feel good for the first week or two.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- I had a horrible time with it. Tried several times. Managed for a month but it was just terrible. I will never, ever, take that again.
Be sure, though, that you don't have on with artificial sweeteners. Still, if you have a bad experience, there are many other ways to accomplish the same thing.
Carob Root Powder, Slippery Elm Sarsaparilla & Turkey Rubarb are just some of the considerations to help pull toxins from the gut. And they provide nutrients, too.
CSM just pulls out all the good nutrients. Some of the side effects involve the mineral depletion. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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gigimac
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posted
Keebler, when you say you had a horrible time with it, do you mean it made you feel sick in a different way than lyme or did it exacerbate lyme symptoms?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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Keebler
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posted
- gigimac,
Normally, I would never just say that I had an awful time of something and then not balance that with "but it could be different for you" or "others have done well with it."
So, backing up, that's said. And, yet, off all the things I tried to do, this was the worst for me by a long shot.
It made be feel so much worse in all ways possible. Ill to my stomach, vertigo worse than the usual fare, legs weaker and balance worse, I fell more but the worst was that -
for me - it lowered the seizure threshold to new lows so that very slighted sensory startle would light a much more intense seizure.
About seizures, though, that was already on my plate before CSM. I doubt CSM would trigger one for someone without that history but it could if magnesium, taurine, calcium and fats fall too low (as that is what CSM does, it strips all the good away with the bad).
Even when not around others or stimuli, I always felt like a seizure was just about to strike. That's icky beyond words. Even after stopping it, it took a while to get out of that always-some-kind of seizure was a hair width away was awful.
My guess is that it was because it was stripping me of good nutrients such as magnesium but there may have been other factors, too.
Mine had no additives, it was from a compounding pharmacy so I know I got the real deal.
I normally hate to talk anyone out of anything as my experiences are so often just not what others (even with lyme) experience.
Still, if you think you can work with this, just go slowly and remember to add back in your nutrients throughout the day at times when you can absorb them.
If this just doesn't seem like it's a good match for you, I suggest to just stop trying. There are other options.
I really hope you do well with this. I hope you get some CSM success stories, too, with details about what made it tolerable and successful.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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gigimac
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posted
I changed the title. I would like to hear from anyone who had a good experience with csm too.
I am taking it for possible mold exposure not just lyme.
Thanks keebler i will back off it starts to be too much, so far can't tell a difference.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
I took CSM to help with "brain fog". It was quite a few years ago, during my early treatment. I definately improved while on it, it cleared out quite a bit of the cobwebs.
Posts: 873 | From WA | Registered: Dec 2005
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posted
What is csm?
Posts: 8983 | From Illinois | Registered: May 2006
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gigimac
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posted
The second day into the csm I started to feel bad so I stopped. I am still feeling bad, it feels like a bad herx. body pain, ears stuffed up, weak.
I hoped this would help but I am not going to push it since it is not a necessity and I will try to find other ways to detox.
Hopingandpraying, it is Cholestryamine and it is technically a cholesterol drug but it is also used to bind with toxins from mold exposure and herxing. It has worked well for some and not so much for others. I guess I am the latter.
I think I read somewhere it can cause an inflammation response in those with lyme hence the crappiness, I think.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
CSM has been awesome for me. I did high dose fish oil 3 caps 3x a day 5 days prior starting it. When I started it I only did 1/2 a tbsp. A day for the first week and continued with the high dose fish oil. After 1 week I went up to 1 tbsp. A day with 10 more days of high dose fish oil. I have only been doing 1 full dose a day but have been doing it since spring. It has made a huge difference for me. I have the genes that don't detox mold or Lyme well. I was very careful starting this because I really wanted to use it.
Posts: 845 | From Northeast | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
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A Blog entry: Lyme Disease & Neurotoxins. Is Cholestyramine the answer? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- I mentioned above some of the things that worked better for me: Carob Root Powder; Smilax / Sarsaparilla; Turkey Rhubarb; Triphala - but forgot to mention GUGGUL.
Guggul: An Herbal Preparation with Many Health-giving Uses
-by Dr. Michael Tierra, O.M.D.- October 2008
Excerpt:
. . . considered the most important for the removal of "ama," toxic substances which accumulate as a result of sluggish digestion . . . -----------------------
Back to Carob Root Powder; Smilax / Sarsaparilla; Turkey Rhubarb; Triphala . . . most of these have a page in this book:
The ONE EARTH HERBAL SOURCEBOOK (Tilltoson, et.al.)
Carob Root powder is not in there, however, I know I read - somewhere - that it can be very helpful to reduce endotoxins in the gut. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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gigimac
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posted
Keebler, how long did it take for the drug to wear off? I only took it for two days so hopefully it won't keep me feeling soo bad for long.
I really hoped this would work for me. It seems like EVERYTHING I try makes me feel worse no matter what,even if it isn't technically killing anything or causing a direct herx.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
Gigimac, You could start the high dose fish oil, and wait for the dust to settle, and try it again. It really works, and the fish oil makes it so you don't have an inflammation response.
Posts: 845 | From Northeast | Registered: May 2011
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gigimac
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Do u think taking the fish oil now will help with the bad response to the csm? I may try it again after taking the fish oil. I had really wanted this to work.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
It does really work. I doubled the CSM at one point. I had to go off abx, because my white counts dropped. So I thought I would really do some detoxing. I did it without fish oil and I went really bad really quickly. It took a couple of days to go away. For it to work it's 3 caps, 3 times a day.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Keebler - thank you so much for the explanation. Of course I've read about cholestyramine before - the abbreviation just threw me for a loop!
Posts: 8983 | From Illinois | Registered: May 2006
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surprise
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posted
Our last LLMD told us to take fish oil 20 minutes after taking the CMS Powder.
We did the powder for months, no reaction, but I became very uncomfortable since both of us were on the thin side,
pulling fats from us for too long/ off label use. So we quit.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I've been on for about 1 month, but have missed some days here and there. Just this week I noticed my thoughts and brain seem clearer...so I'm excited!
Didn't know about the fish oil, so I'll add that in. Also my llmd gave me Welchol instead just yesterday at my visit. I wanted a pill form because it's more convenient for me. You are supposed to wait 4 hours after CSM before you can take anything else. I found that hard.
Posts: 175 | From SW PA | Registered: Mar 2008
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CherylSue
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posted
good info
Posts: 1954 | From Illinois | Registered: Aug 2007
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WPinVA
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posted
On day two or three, at a very low dose, I got an excruciating migraine complete with vomiting, the works.
Not entirely clear if the CSM was to blame or if it was the fish tacos I had that night, as I was also developing new food allergies/sensitivities at the time.
But I've been scared to try it again so now I'm using charcoal and sauna to detox.
Posts: 1737 | From Virginia | Registered: Aug 2011
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CherylSue
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posted
Hmm, I started with 1/2 packet in the am on an empty stomach. Withing a half hour I was lightheaded and loopy. I had terrific fatigue for the next day and a half. Sort of depressed, too.
I did not repeat. I purchased some modified citrus pectin and cholestepure and will try that, although supposedly it is not as effective as CSM per Dr. S.
It either helps or hinders, depends on the patient, I guess.
Posts: 1954 | From Illinois | Registered: Aug 2007
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CherylSue
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posted
I was feeling ill for a day and a half-lethargic, malaise, depressed, but then it cleared.
Then I started the modified citrus pectin powder. It may be just a coincidence, but the last four days I have been feeling more of myself with more energy and stamina.
My regular doc wants me to take lisinipril for high blood pressure, but you can't take it with any potassium because levels increase. Modified citrus pectin has 600 mg of potassium in it, so I'm in a quandry. Fix the blood pressure or feel physically better?
Posts: 1954 | From Illinois | Registered: Aug 2007
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