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» LymeNet Flash » Questions and Discussion » Medical Questions » cholestrymine herx or bad reaction?

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Author Topic: cholestrymine herx or bad reaction?
Talktel
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Hi all,

I'm not yet by an LLMD, and am fending for myself on my own with Lyme and co, and colon issues.

I started taking cholestrymine, actually for my gut issues. Only one dose a day, but I'm taking it already for two weeks plus.

I'm still on bicillin -which I don't think is working anymore- but maybe its better than nothing.

my appointment to the other LLMD is end of Nov.

TOday I had an awful day, after I took CMS, I got very neauseus, and felt faint and on the verge of blacking out. Terrible headache too.

I had taken it on an empty stomach, so I ran to eat. I feel better tonight interms of that.

My Lyme sx are terrible, especially the vertigo. I am literally homebound because of that.

I would stop the CMS to see if the way I felt is from that, but my gut gives me no choice but to stay on it.

Could this possibly be a herx from the CMS, or am I just sliding downhill because of not being treated adequately?

I'm on bicillin, malarone and art, and now Cholestromyine. (only one scoop a day) And not under a doc's care yet.

I wqas supposed to go to a chiro to alleviate sx, but I couldn't make my way there yet due to personal and family emergencies.

So is this a lyme spiral downward or a CMS herx?Anyone familiar with this?

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RI

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Lymetoo
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It can definitely make you "herx."

CSM made my stomach problems unbearable. I stopped taking it and never looked back.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Talktel
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How did it make your stomach problems unbearable?

In terms of the colon, it is better with the CSM.

--------------------
RI

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lax mom
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I bet your colon is better because of the constipating effect of CSM...since you had the opposite problem prior to taking CSM.

--------------------
♥ ♥ ♥ ♥ ♥
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nonna05
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what did TuTu take in place of it??

what did it make you feel like?

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Talktel
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yes, colon is better and that's why I took it.

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RI

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Talktel
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I don't know for sure if its the CSM.

I felt shaky, weak, nauseas and like I'm blacking out. I'm feeling fluey and vertigo is terrible, but I'm not sure is that CSM related or not.

Does anyone know if it makes one very dizzy? Or is it my reg Lyme sx?

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RI

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nonna05
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what bad effects? How did they feel ?

I've tried over 10 to take this and always go off , for many reasons,,,sometimes because of time.

TuTu what did you do instead?

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Talktel
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Did TuTu take this for the colon, which is why I started it?

I just figured it would beneficial for the Lyme at the same time.

If I go off CSM, my colon is trouble again.

What do I do?

--------------------
RI

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RZR
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I tried CSM twice before and could not tolerate it....nausea, nervousness, constipation, etc.

Now I have been taking 4 packs daily for 3 weeks. LLMD told me to start out with a very small amount a couple times a day and go up to 4 packs daily.
It took me 2 weeks to get up to full dose.

To avoid constipation, I eat All Bran cereal for breakfast.

--------------------
Tick bite May 2009
Diagnosed June 2009

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Talktel
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For me the constipation part is great!

That's why I started it in the first place, because of an inflamed colon which gave me the runs.

I am better now with the cholestromyne, although by no means constipated.

What made you be able to tolerate it now, in terms of the nausea etc, when you couldn't tolerate it before?

I'm just taking one scoop a day.

--------------------
RI

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Lymetoo
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I didn't take anything to "replace" it.. I was only taking it for toxin removal. I felt MORE toxic. YUCK!!

Yes, I got constipated but it also gave me right quadrant pain .. ended up with GB surgery about a year or two later.

It was also a nightmare trying to work it in around other meds. Hated the whole enchilada!! [Wink]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Talktel
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GB surgery because of taking CSM?

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RI

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Lymetoo
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well, I can't blame it on CSM but it sure didn't help!!

The abx were probably the #1 issue.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Talktel
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That's always a concern with abx!

I have to figure out what to do with the colon. My conventionalGI doc didn't have how to treat me.


Lax Mom reccomended to me a fiber product to replace the CSM.

ANyone have colon issues and have it resolved with that? It s not UC, just an inflammation of the colon.

TIll I get that product on Monday, (I just ordered it) do I continue with the CSM?

What do I do for the colon instead?
I'll look at the post tomorrow morning.

--------------------
RI

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D Bergy
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Have you tried Turmeric or the more potent form of Curcumin?

I use it and Ginger to prevent inflammation from Crohns Disease. It also helps with joint pain and any other inflammation related pain. Lots of other beneficial properties particularly for someone with Lyme Disease.

Good luck.

Dan

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RZR
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quote:
Originally posted by Talktel:
For me the constipation part is great!

That's why I started it in the first place, because of an inflamed colon which gave me the runs.

I am better now with the cholestromyne, although by no means constipated.

What made you be able to tolerate it now, in terms of the nausea etc, when you couldn't tolerate it before?

I'm just taking one scoop a day.

I think the key to tolerating it this time was gradually increasing the dosage. I would stay at the same dose for 2-3 days and then bump it up a little.

I am using it for detox.

--------------------
Tick bite May 2009
Diagnosed June 2009

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Talktel
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I don't have tumeric or ginger at home.

And since I ordered the other product, I can't order other items, since finances are always an issue with me0.

So until I get that on Monday, I don't know what to do for colon.

--------------------
RI

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D Bergy
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I use cholestryamine to slow down my intestinal process since I had part of my Illium removed because of fistulas.

I also am familiar with its ability to remove mold spores and E-Coli and other irritants from the intestinal tract.

With Lyme, I am not sure what mechanism is supposed to help with the disease. I would think that the irritant in this scenario could be Lyme itself, which is really not going to be effectively removed by this method, or another pathogen.

Can someone explain the concept of using Cholestyramine in this situation?

Dan

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