i just saw a discussion on the board about Cholestyramine possibly making people feel worse?
my mother has been taking it for c.diff. and i had NO idea there could be bad lymie side effects.
anyone have any bad experiences with it? her symptoms are neuro.
Posted by Lymetoo (Member # 743) on :
Taking it for c.diff? I never heard of it being used for that.
But anyway, CSM can cause what they term an "intensification" of Lyme symptoms. Maybe just another word for "herx."
How long has she been taking it?
Posted by cameronb (Member # 12240) on :
she's been taking it for months. her c.diff has relapsed time and time again so the doctor has her on c.diff abx as well as 2-3 doses of csm a day to bind with and carry out the bad c.diff toxins and bulk up her stools.
why/how does csm cause and intensification of lyme symptoms. i'm absolutely astounded at this info!
Posted by Lymetoo (Member # 743) on :
Hmmm.. I'm not sure HOW. I just know that's what my LLMD told me when I took it.
Yes, it would be good for removing the toxins of c.diff. That's why they give it for Lyme... to remove toxins.
Maybe you can do a search here on Google it for info on why it causes an intensification of symptoms.
The search function is in the upper portion of this page.. Look for the little word "search."
Posted by lymebytes (Member # 11830) on :
Flagyl is taken for c.diff...better check into this further.
Cholestyramine is often used for removal of neurotoxins which could be the cause of symptoms. It also absorbs everything good and bad including oil nutrients from food and supplements. If used too long, it can make you deficient in all oil souble vitamins, A, E, K and D and more which create havoc.
If she has been taking this "binder" long term she could be creating a problem and should be checked for all vitamin levels mentioned above. My LLMD never allows anyone to take this for more than 30 days tops.
I had intesification of symptoms on a natural binder (chitosan) and became critically deficient in D.
This seriously needs to be discussed with her doctor or get a second opinion. Take care.
Posted by cameronb (Member # 12240) on :
lymebytes,
i was actually just about to send you a PM. did you write about activated charcoal helping to detox? what are the side effects? is constipation an issue? how much is a good dose to be effective?
in addition to the CSM, mom has been taking flagyl as well, along with periodic rounds of oral vancomycin and rifampin to try and eradicate the c.diff.
she has developed this horrible symptom: severe vertigo. so bad she can't function, can barely eat, or think.
the vertigo has grown more and more intense in the time she has been having the c.diff treated with the flagyl and sometimes vanco and rifampin.
i have to think she has toxins that need to be gotten rid of and i am searching for an answer to help her.
Posted by Lymetoo (Member # 743) on :
Vertigo is also a symptom of lyme. Could be that it is happening because she is off abx for Lyme.
Flagyl could also be causing the vertigo.
Posted by cameronb (Member # 12240) on :
she tested positive for lyme and babs in 2004, and has had a form of vertigo (much more manageable) for years. she treated with abx and then rife and other symptoms peeled away but the vertigo remained. (it would get very bad when she herxed).
then last year, her vertigo got really really bad. we think she had a relapse after an aggressive yeast treatment. she also had two rounds of bactrim, then cipro (for a suspected UTI) that might have helped cause it to ramp up. SO HARD TO KNOW.
but the horrific vertigo never stopped, continuing all last year. she tried commit suicide four times, the last time she jumped off a three-story balcony.
miraculously, she survived and after months in the hopsital, is expected to make full recover. she also woke up with NO VERTIGO.
only after the c.diff struck and she started taking flagyl and vanco, did it start to creep back in.
it seems the oral vanco really ramps it up. she was on it for two days last week, and now the vertigo has returned full force.
i am just searching for any answers.
Posted by cameronb (Member # 12240) on :
beyond the idea that csm long-term is bad, which i will definitely investigate with her doctor, i'm having trouble understanding why pulling the neurotoxins out is bad, or could be intensifying her symptoms..
isn't that what we want? or is do symptoms worsen during the detoxification process?
any light you can shed on this would be incredibly useful. thanks!
Posted by Lymetoo (Member # 743) on :
Maybe as it's removing the toxins they are in circulation just enough to cause more symptoms?
Constant vertigo would indeed be H*** on earth. Sorry to hear that she is suffering so much.
Posted by asus (Member # 13881) on :
Yes, see the info in Dr. Shoemaker's book "Mold Warriors". He claims taking CSM in a Lyme patient will make them worse. Especially if they have the gene that prevents them from detoxing the lyme biotoxin. I think he pre-treats people with a drug to reduce cytokines before he uses CSM/antibiotics. Haven't done it myself, but I have read his stuff.
Posted by Lymetoo (Member # 743) on :
Yes. He uses Actos which is actually given for diabetes.
Posted by cameronb (Member # 12240) on :
thanks, i'll go read up more on his writings
Posted by Lymetoo (Member # 743) on :
He has a website. Let me know if you need help.
Posted by Rianna (Member # 11038) on :
YES YES
It draws the toxins out of there beds and in to the gut for removal as this happens you can experience a severe cytokine response, that is why patients are given actos to down regulate the cytokine/inflammatory response.
For me it was worse than any AB herx I had ever experienced I could hardly bare to be awake I had to resort to benzo's but my LLMD made me persist with it and after 10 weeks my mobility was 40% better. This shows the necessity of removing these damaging neurotoxins.
I now have a maintence dosage with IV glutathione, weekly colonics and lymp drainage massage whilst on IV antibiotics as I now realise to get fully better Ab's & co-infection meds are only part of the picture and intense detox is the missing part of the puzzle.
Rianna
Posted by Angelica (Member # 15601) on :
I was given Cholestyramine for Lyme and mold toxins and not Actos for some reason. I did not herx on it. I personally would not take it again. It might have helped my immune system a little.
A natural doctor warned me it would end up making me too cold all the time and it has.
If I was going to do it over again I would just use Activated Charcoal to get toxins out.
I did 4 boxes of the Cholestyramine packets and recently refused to take anymore when it was once again offered to me. I tried to turn it down the first time around but I should have stood my ground better. My Rx had fructose in it which seemed to put my yeast/fungus count over the edge.
Posted by cameronb (Member # 12240) on :
Rianna,
Absolutely agree. How is the detox going for you?
Mom had a doctor recommend oral glutathione. i see so many verisons of it in the health food sites: l-glutathione, etc..
what is the version of glutathione he was recommending, and i understand you have to take alpha lipoic acid for it to be absorbed correctly?
ever done this/taken it?
Posted by cameronb (Member # 12240) on :
wow, angelica, mom is cold all the time. this has been a very informative thread. thank you all so much for your help.
Posted by Rianna (Member # 11038) on :
[QUOTE]Originally posted by cameronb: [QB] Rianna,Absolutely agree. How is the detox going for you?
It's going great
Glutathione - Im am now on IV Glutathione 3x per week 2gms per dosage as I have a PICC although personally I think the next best thing is the Nebulized Glutathione from Key Pharmacy - They supply the nebulizer and 2 dosages per day and it works out at $80.00 per month. The oral stuff is OK but does not touch this.
I also remain on Actos every day to keep cytokine response lowered and now am only on 1 high dosage of 8 gms 1 day per week of CSM followed by a profesonal colonic and rectal refloridization the next day
I also still do Mundipur Burbur & Parsley Detox and have a professional physo Lymph drainage once a week
Rianna
Posted by Tincup (Member # 5829) on :
Please tell your mom Tincup said she loves her and misses her and we wish she would come back on line.
And she still owes me some fried chicken and biscuits!
And yes, the Questran can make her MUCH sicker. It can also decrease the absorption of the antibiotics needed to kick the c dif.
Posted by cameronb (Member # 12240) on :
Do you need a scrip for the nebulizer glutathione with Key?
Posted by Rianna (Member # 11038) on :
quote:Originally posted by cameronb: Do you need a scrip for the nebulizer glutathione with Key?
Yes both for the nebulizer and the glutathione - then fax it to them with your card details and they will ship it to you cold storage - it must be kept in the fridge in the dark (it comes in a black sealed bag).
It comes in 60mg/ml, 100mg/ml, 150mg/ml or 200mg/ml, nebulize twice a day
Rianna
Posted by GiGi (Member # 259) on :
I don't have time to read the whole thread.
If you stir up, mobilize too many neurotoxins with the meds you are taking, the binding agents are not sufficient to take care of all. Lower the meds --- the body can only handle so much --- and increase the binding agents. Add some apple pectin into it - some chlorella - if your doctor believes in the cholestyramine only, he should broaden his horizon somewhat. Many people do not tolerate cholestyramine at all. We tossed ours after the frist try.
But mainly - too much toxin mobilized and not enough binding agents. The toxins will just recirculate again and again and stress the body thereby even more. Not to mention what liver and gallbladder and kidney have to accomplish! We have only one of each (except the latter).
It's always good to use common sense. It has little to do with Lyme symptoms if the body is in overload with powerful abx.
Take care.
From my experience.
Posted by FoggyInLA (Member # 11643) on :
Lets not get ahead of ourselves here. #1 CSM(Cholestyramine) Depleates the body of Vitamins A,D,K, n others. True but if you supplement your body with good doses you should be fine.
#2 CSM can deplete levels of antibiotics. Yes this is again true. You have to remember to take all supplements at least 2-4 hrs after your dose or 1 hour before your dose. Like me what I did is I divided up my four doses into 1.5 packets 2x a day and 1 at the end of the day this way, instead of having to take it 4x I only took it 3. Now I'm down two 2 packets 2x day.
#3 CSM will make you herx, this is again true, but there is a solution. Actos as mentioned above. You only need to take it for 10 days. 7 off the CSM and 3 on, this should alleviate the herxes.
#4 But it has sugar in it I can't take it. Tell your doctor to compound it w/o sugar at a compound pharmacy, there are a couple oh threads where I have heard them do that.
Trust me the always ask why something does what it does, i.e. why does it suck out vitamins, what can I do about this?
I've been on it since Jan this year. I refuse to go off simply because the neurotoxins cause way too much havoc in my life and I with them I cease to function.
Posted by Tincup (Member # 5829) on :
Foggy...
You said.. "Lets not get ahead of ourselves here."
Ok... good deal. I would like to make comments on the info you provided. NOT to argue... just to show that everyone is not the same and what may work for one person is not going to work for others.
You said...
"#1 CSM(Cholestyramine) Depleates the body of Vitamins A,D,K, n others. True but if you supplement your body with good doses you should be fine."
Just so you know.. many have done that in the past... and they weren't "fine". Some had major problems.
You said.. "#2 CSM can deplete levels of antibiotics. Yes this is again true. You have to remember to take all supplements at least 2-4 hrs after your dose or 1 hour before your dose."
Some people still have the problems with meds being absorbed if only dosing it one time a day... 12 hours away from the antibiotics and other meds. Thyroid meds warn that this can happen... maybe others too... but this one I remember seeing a long while back.
You said.. "#3 CSM will make you herx, this is again true, but there is a solution. Actos as mentioned above. You only need to take it for 10 days. 7 off the CSM and 3 on, this should alleviate the herxes."
There is no way Actos can alleviate the herxes in a good number of people. Seen it tried repeatedly by a number of people and it didn't do it. Have seen them use the Actos the whole time too.. and it didn't work. For some it might... but not for a good number of folks I've seen doing it.
You said.. "#4 But it has sugar in it I can't take it. Tell your doctor to compound it w/o sugar at a compound pharmacy, there are a couple oh threads where I have heard them do that."
They also sell a ready made sugar-free dose for folks... and compounding sometimes can be more costly... so do check with the pharmacist.
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I only point this out to be sure folks know that when a person posts and asks for others experiences with something... just because they report something different than someone else.. it doesn't make them wrong. And to show that the literature isn't always right.
Hope that helps someone.
Posted by FoggyInLA (Member # 11643) on :
Good Stuff Tin, and let me add that I'm getting treated for Bart and as the Bactrim is killing it off, I feel the herxes off the CSM.
Posted by Alv (Member # 15192) on :
cameron :
YOUR mother has BARTONELLA .THAT is what happened to me after I did somethings that hit babs and lyme .I had no clue about about LYME and company and right after that I had on frontal lobe brain swelling and was about to hit a truck on the highway as it was horrible and still did not knew what I had.
Now that I have been hitting the bart for more than a year -is a diferent story.
BY THE WAY .My labs are all negative.BUT muscle testing says MY MAIN issue is bart ....even though the rest , neuro and other coinfections came up on test.
YOU NEED to treat her for BART no mater what .Cholesteramine will bind the toxins-neuro...and if she is adresing lyme and babesia _BART raised her agly head...that happened exactly to me.EVEN though I HAD mostly lyme symtoms and babs.
When I lowred the load of babs and lyme....I had problems with walking dizenes and vertigo.MAJOR and linked to BART.
People that do not have bart can not tell the diference.I DO have BABESIA , BARTONELLA , EHRLICHIA , NEUROLYME and MUCOPLSAM fementas and some viruses.
MY VERTIGO improved only with BART treatment.She alsready has used Rifampin and vanco...IF you read Dr J S in florida -BOOK for treatment of bartonella , you just agrevated BART -but it does not eradicate it .
Buy his ebook and check for marks on her body that can identify bart.....and see if that matches with your mother .I found that I had 3 kinds of marks -meaning I have 3 strains of bart...and I am sure that I have B henselae , QUINTATA and BLO.THAT is why I was like that .
Please read his ebook and you will understand.
EVERY time that I stop treating bart comes back with a revenge as it is active and it shows that is still the last coinfections that I am dealing after 14 months of treating it...
Posted by MrG (Member # 10254) on :
In Oct of '06 it was suggested by my LLMD to try Cholestyramine. Well I did. I've only taken it for a couple of days & a partial dose & it has given me frontal lobe seizures.
The seizures have not let up as I still get them. Since this time I've had hundreds & hundreds of seizures. Had 2 today during a nap.
Recently I had been doing alot of crying from the death of my brother. This has set off as many as 12 seizures a night.
This is what Cholestyramine has done for me.
Posted by FoggyInLA (Member # 11643) on :
MrG were you having neurosymtoms before? CSM can aggrevate these symtoms and if your mind isn't ready or is in the wrong place a seizure could happen.
Could you explain what a temporal lob seizure is. Many time I have felt like I was about to have one not sure that I did. Pretty sure that I didn't. But my LLMD explained that detoxing off of CSM can force your mind to work right and if its still wired toward lyme, it can cause a seizure.
Also have you completed your lyme treatment yet? This may also cause the seizures.
Posted by MrG (Member # 10254) on :
Foggy...yes I was having some neurosymptoms before the CSM but no seizures. And yes I do believe the CSM aggrevated something in my head but this is rediculous.
My temporal lobe seizures would be around my third eye area just above my eyes & between. Most times I would feel the electrical activity in my head & then the bang in my head. Each one would last a few seconds.
Curently not on lyme treatment. Recently had a heart attack & had angioplasty done with a stent & am having another done this thursday.
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