timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi all~
I took cholestyramine (CSM) last month for C. difficile. I was on a small amount (about a half scoop a day). 3 days into it I got very bad CNS issues....feeling disconnected from my body, headaches, speech getting difficult, typing difficult, etc.
I quit the CSM and several days later the symptoms subsided.
When I saw my LLMD last week, he said that CSM can cause those kinds of issues in people with lyme....and he gave me an article to that effect.
Dr. S says the same kind of thing....people can get "sick as hell" on CSM if they have lyme. (If you do a google search on cholestyramine and lyme you'll find some of his stuff).
I googled CSM side effects, and saw just GI issues....nothing about CNS issues.
This fascinated me.
What are your esperiences with CSM??? Did you have side effects? If so, what kind?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I actually took CSM specifically for my CNS symptoms, and I thought it really helped. I had (and still have unfortunately) pretty involved neuro infection and neurotoxicity from treatment. I had a lot of pain and pressure in my head, as well as very unpleasant episodes that I can only describe as "seizure like." The CSM helped chelate the neurotoxins, and relieved some of the pressure and pain in my head. The thing that I couldn't tolerate were the GI side effects. I still take it occasionally, but it's hard to work into your meds regimen because of its chelating effect.
Good luck!
Jen
Posts: 393 | From Washington, DC | Registered: Jun 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
So, Jen, the main negative symptoms that you had from the cholestyramine were GI symptoms, correct?? You did not have a worsening of neuro symptoms, correct??
I ended up speaking with the nurse practioner at my cardiologist's office today and brought up the whole CSM issue to her.
To her knowledge, GI issues are the only side effect of CSM. She was quite intrigued by what happened to me, and is interested in the articles on lyme and CSM that I have. So, I will take them in to her, and she and the cardiologist are going to look them over and get back to me with their thoughts.
I am GLAD that someone in the medical field is curious and interested in what I'm going through. I hope they have the time to give me some feedback.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Buy a corkscrew as that stuff corks you up something fierce!
Colace was a must.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Timaca---you know some of my experiences so far, but for the sake of the thread and everyone:
I have been at 3 scoops per day for about 2 weeks now. I ramped up...1 scoop a few days then 2 scoops then 3. I did this instead of taking actos which is precribed by some for the cytokine explosion which gives you the herx-like reaction.
I have not been able to notice any effects on anything except a TINY bit of tummy upsetness and gurgling.
I am also on mepron/zith, plaquenil, artemisinin and actigall.
I started taking it with lots of vitamin c and mag to combat the constipation BUT I have stopped taking that stuff as it is hard to fit in and I forget and I DONT NEED IT! Yes, that is right, I am having nice long soft stools every morning like clock work. This is a veritable miracle given that I have had constipation problems due to adhesions and endometriosis symptoms in the past.
Hooooray for pooooooping! I also take psyllium and have every day for 4 years now.
Anyhow, so far I dont notice a difference. But the study that I am modeling my protocol after says that no improvement was shown at weeks 6, or 9 and it was only shown at week 12! So I have a long way to go.
It does upset me that I didnt seem to have any cytokine reaction, but I have no idea what this might mean in terms of if it is working or needed for me.
Thanks for starting the thread. Anyone else Currently using CSM?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hubby took it for a month and a half...problem is, it was at the same time he was doing the flagyl. So, it's hard to know whether the CSM was causing harm or good??
He has taken a few scoops while on flagyl break, and I haven't noticed any problems or issues that I think are related to the CSM.
He seems to be improving a bit while on break from ABX..
I dunno........
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
I had very bad neuro symptoms from it. It did it a second time to be sure.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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posted
I herxed on CSM and had worse neuro symptoms until the neurotoxins cleared. CSM helped alot in the long run of about 2 months of taking it.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Side effects...WE dealt with an almost successful suicide attempt. There was little explanation re: actos and no acknowledgement that CSM might make psych issues worse. ANd when the problems hit, I was not given access to the dr via his office manager. Not a pretty story..
Second time around, with a different Dr giving great instructions, it worked well but my daughter had great difficulty with the liquid version..So the Dr ordered it compounded in gel caps.
Then I got brave and talked to the pharmacist and discovered he did nothing with the mixture except to put it in gel caps. I found for about $30 I could do it myself and save hundreds over the compounding pharmacy price.
I have a college friend that owes her life and mobility to CSM. She suffered from sick bldg. syndrome. So I am convinced it works.
It is an asset in toxin removal but do not let anyone tell you it does not cause herx's. I think they call it intensification reactions. Good luck. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Areneli had lots of informative posts about Cholestyramine last year. Maybe you can find them in search. hats
Posts: 956 | From MA | Registered: Nov 2004
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My only side effects from CSM have been GI upset (which has been manageable). I have been taking it now for maybe 8 months, and have only had CNS relief, and not exacerbation of symptoms. I take it in the powder form, and take 2 packets a day (at once, usually right before lunch).
CSM is an old cholesterol drug which has been around a long time. There is fairly extensive amount of literature on it.
Good luck!
Jennifer
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I take something called Cholestoril Plus which has Beta Sitosterol in it. I've been taking it for two weeks and not noticed much except a bit of bloating, though I poop pretty regulary. What is the difference in effect supposed to be between these two....CMS and Beta Sitosterol?
Posts: 98 | From cambridge ma | Registered: Oct 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
What can I say? Sometimes strenge reaction happens after a drug that doesn't fit you.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
timaca, some people who take CSM really need to take the Actos with it to keep inflammation down. Not everyone needs this, but for those who do, it can be really important.
The inflammatory cytokines can be measured. Labcorp does it, though it can be a struggle to make sure it is done properly. High MMP-9, Leptin, or PAI-1 can cause severe herxing with CSM. MMP-9 in particular can effect the CNS.
It is a chemical that the body uses to open space in the matrix of the cells in order for other chemistry to move easily through the body. If that chemistry happens to be inflammatory, this ease of movement can be bad news.
I did have an increase in CNS symptoms when I first started on CSM, mostly an increase in headaches, that lasted for about two weeks. After that, I had tremendous improvement in nerve pain, both the headaches and other pain bodywide.
The CSM doesn't just bind toxins. It also mobilizes toxins from the body as bile is bound up. Cholesterol stored in other areas is released to go to the liver where it is processed into more bile. This cholesterol carries the toxins with it, and as they travel through the bloodstream, it can increase symtoms until this cholesterol is also bound up.
In the beginning, you can mobilize more toxins than you can bind. Over time, the blood levels go down, and things improve. Taking Actos can temporarily lower some of the cytokines that cause symptoms until the toxins have been removed.
posted
I have had a tremendous amount of neuro issues to deal with and have not been successful. I did poorly with my first pas of CSM as a half pack of day- well, let say they don't need a concrete machine when I am around. Several sticks of dynamite for the constipation- no Gi upset- Other contributors have given excellent information. I hope if the decision to reuse this devlops, I am more successful and will put the good information on this thread to use. Good luck and hope it is of help to you.
Posts: 719 | From Delaware | Registered: Jan 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Thanks for everyone's reply. I am hoping my cardiologist will give his input too. If he does, I'll post it.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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