Topic: Why does Cholestyramine make me Herx ? Every Time ! I don't get it !!
lymetwister
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Member # 19590
posted
Took 1 packet last night a few hours before bed and have been a complete mess all day.
I'm in a holding pattern from a Nasty Brain Herx from Mepron that was getting better and the CSM seems to have stirred it all up, rather then detoxify anything.
I'm doing lots of other Detoxing too right now, but the CSM brought back Tremors, and crazy Head stuff that was so much better prior to today.
If you have a logical explanation, I'd love to hear it. I feel very inflamed all over as well.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
In some Lyme patients cholestyramine causes a cytokine response that is intolerable. I couldn't take it the second time my LLMD prescribed it, but I did early on.
Dr. S (the mold specialist), prescribes Actos with it to prevent this.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My Md has me on Pure Encapsulations CholestePure instead of what ur on. No side effects. Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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lymetwister
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Six,
I'm a bit confused. I thought the CSM was supposed to detox the body and binds up toxins.
What is the process by which Cytokines are involved ?
I honestly believe your answer b/c it's exactly what it feels like, but what does the addition of Actos do ?
This entire thing is getting ridiculous for me. The frustration mounts like you can't imagine.
My entire CNS goes crazy when I take meds at the correct dosages. My Herx's are aches and pain in the arms, shoulders, neck, etc., but what I can't tolerate is what goes on inside my head.
It feel like swelling, and seizure like activity. I cry a the drop of a hat. I shake as in tremors. Pressure mounts up inside the head so bad that my right eye droops and goopy stuff comes out.
If I could get the head symptoms under control, the rest would be a breeze, including the Tachycardia, Shortness of breath, general Malaise, etc.
Babs appears to be such a big player for me. So, I'm PCR pos. as of recently even though I was told I was loaded for a long time. This was my second time trying Mepron. I was killing, no question about it.
At day 13, I had to hold for 3 days as I could feel the Herx coming on, but 3 days later I felt like I could continue, so I went another 6 days back on for a total of 19 days. But on the 19th day, I literally hit a wall and had to stop. But with Mepron, you don't just stop, as the drug keep killing for up to 10-12 days after your stop due to the long half life.
I do plan on restarting when things calm down, but how ? Does a 1/4 of the normal dose kill anything ? If so, how long do you do this dose before going up. How much Arteminisin do you use with it, etc.
I know these are all LLMD questions, but my LLMD has had a tough time treating me b/c of these Brain Herx's that almost land me in the Hospital each and every time. It's rediculous what I go through and put everyone I love through when this happens. And, of course, it's 100% unintentional.
Sorry, just very frustrated over here. Pushed myself and had my kids at the Ocean for 4 days with my parents. It was great being with everyone getting away, but I was in a Mepron Herx the entire time and still not sure how I did the trip.
I can't get a new LLMD as mine is the only one that takes Medicare around this neck of the woods.
The frustration mounts.....
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Right. Google cholestyramine actos .... lots comes up.
I don't know why this happens, but it does and it certainly did with me. My doc wouldn't prescribe the Actos because I was too lightweight, so I just had to stop taking it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Jamers
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posted
Hi twister, I just wanted to say that Im sorry you have to deal with all that craziness. I too am not the normal patient and my doctor looks at me like Im losing it because of the stuff I say. I too have the CNS, nervous like twitching, pressure in head and neck, feels like my brain is doing some weird stuff- like tremoring.
I just started Bactrim and it got a lot worse so Im thinking mine is due to Bartonella flaring messing with the nerves. As far as Mepron, some people start at a lower dose and work up to 1 tsp. which I am at. My blood tests shows that to be therapeutic enough. The artemisinin was too strong for me, caused a lot of histamine/swelling response. I dropped down to the normal dose of 200 a day and it was much better.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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I think some bugs , lyme, mycoplasma, chlamydia and I think babs. In early infection your total cholesterol drops in longer standing your body tries to compensate for the lose elevated you total cholesterol. So by taking cholestyramine you are taking food away from the bugs causing them stress maybe some to die hence a herx. Here are some abstract explaining"
I couldn't tolerate it at first either so I started wit a half dose for a week and moved up.
Posts: 433 | From new york | Registered: Dec 2004
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lymetwister
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posted
So, if you don't have Actos, is the answer to just stay on it at lower doses and work your way up ?
Thanks for all of the insight everyone.
My Cholesterol has always been high even prior to getting sick. I couldn't tolerate statins and drugs used to lower my Triglycerides (Tricor) did nothing.
Last checked, I have plenty of Cholesterol for the bacteria if thats what they like. I can't see how one packet of CSM would change that factor.
All I know is that this disease is crazy !! You play by the rules and treat as one should, but in the end, you are still sick. You try alternative and nothing changes. I'm still in the game, but my kids are now 4 years older. Not exactly what I had planned.
So, here I sit and once again and wait for things to calm down. I wish Antidepressants worked for me, but they make me sicker. Even 5-HTP doesn't do anything, so whatever makes me cry has nothing to do with Serotonin. I just think it's lots of swelling and Toxins, not sure if the presence of the Bacteria are even causing symptoms.
Lost in Lyme Land......
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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emla999/Lyme
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posted
I know that Dr. S claims that the negative reactions that some people experience when taking Cholestyramine (CSM) are often due to cytokines being released.
But in my opinion, these CSM induce negative reactions may also have something to do with the fact that CSM binds to and removes various essential compounds from the body.
For example CSM can remove thyroid hormones from the body. Actually, CSM is so effective at removing thyroid hormones from the body it can be used as an adjunct treatment for Graves' hyperthyroidism.
I cannot help but wonder what other hormones does CSM remove from the body?? Plus CSM appears to to be able to remove virtually ALL fat soluble nutrients and compounds from the body. Nutrients, such as Vitamins A,D,E,K and etc.
So, in my opinion some of these negative side effects that people are experiencing from taking CSM may not be due to the cytokine release but rather it may be due to the removal of an essential hormone, compound or nutrient by CSM from their body.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I wish I had the answer, but just wanted to say I feel you pain. I look at my child four years older now and get sad. This disease ruined my life. My emotions are dead from this illness so there's not even the benefit of grieving. It's like the ticks or whatever stole my soul. Like a shell of my old self.
Same as you, whatever I try is not tolerated and detox methods are useless most times. I don't reap the miracles of lemon water, benedryl, NAC, and whatever other protocols so many hear swear by.
I had the EXACT same reaction to CSM you did. All hell broke loose with head sensations in 30 min. I almost had to call an ambulance. Scared me to death.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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karenl
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I would not take Actos - google lawsuits.
I took chol. without fillers etc., compounded and 18 of the 600 caps. a day. After some time no herx.
Can you take other meds for detox?
Posts: 1834 | From US | Registered: Oct 2008
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karenl
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Gary, are you sure there is no mold in your house? If you would live in a mold environment you would herx again and again...as long as there is mold.
Posts: 1834 | From US | Registered: Oct 2008
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Gary, as you know, I used to herx like you do. I don't really herx anymore. Still ill, but have many more days of wellness.
While I don't think I specifically dealt with huge mold issues, from talking to a lot of people, I would have to agree with karenl.
And if I recall, your C4A was rediculously high indicating possible or probably mold exposure. Don't ask why I remember such things.
Have you tried changing environments? Perhaps a relatively new apartment? You may be (pleasantly) surprised how much impact the environment has.
Have you ever gone on vacation to somewhere dry and desert-like and noticed a decrease in symptoms?
I know this sounds crazy, because it is. The whole thing is crazy.
Oh, and I am sad you are still going through those terrible herxes. Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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lymetwister
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C4a is WNL, C3a is elevated. I'm PCR+ for Babs, 2 pos. Bands on WB.
It's Lyme for me Kday.......
Lots of inflammation and Limbic involvement... And of course, I can't detox worth a damn.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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karenl
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Gary,
you did better when you have been in this clinic, right? Not at home? If you are not getting better, you have not the right diagnosis - maybe lyme and babs is not your worst problem.
Could be that mold is no. 1 parasites no. 2 ( I know you treated, but did you do the K protocol for all of them?) babs only no.3
You need to rethink everything.
I could detox after I was on hydroxy B12 shots. Did you treat flukes with biltricide, they may block your liver?
You react to cholestyramine, there is enough evidence of mold. The inflammation is typical for mold and also parasites can do it. If you have a thermagram you could see what is inflamed.
You are digging in the wrong place, not getting better. Springshowers was not getting better, now thinks of mold.
Posts: 1834 | From US | Registered: Oct 2008
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lymetwister
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Not sure what clinic your talking about Karen.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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karenl
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I thought you have been some weeks to a natural healing center of a famous Dr...? and you did feel better there.
When they opened your vessels, you herxed more. Maybe more mold could reach the brain as now the vessels are open. Maybe the body wanted to have the vessels narrow in order to keep out dangerous mold, who knows.
Why are you taking cholestyramin - it is a mold binder and not so good for other toxins.
Posts: 1834 | From US | Registered: Oct 2008
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lymetwister
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Suppose to be good for all Toxins from what I've read. No different then taking Activated Charcoal, etc. to detox.
I never went to any clinic, perhaps I should, lol, if I only had the money right ?
I think my diagnosis is correct Karen.. Sick, just like everyone else here. In my case, I can see the Babs in my blood. Can't see the Borrelia, but thats not unusual. I might be looking at Bart as well, who knows.
I see an Neuro ID from Hopkins tomorrow. I'm loaded with abnormal labs, parasite pics. in my RBC's, etc. Lets see what I can get accomplished. I'm sure nothing, but another Dr. to add to the over 300 I've seen thus far.
One day, someone will care and try and help besides the LLMD's who are so limited b/c of the unknowns with this disease.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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karenl
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Hopkins - as far as I am informed they have no neuro who would understand your disease. Let us know what they find.
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lymebytes
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My son recently tried cholestyramine and has had what he described as "the worst herx ever".
Our LLMd (well informed of Dr. S's protocol) would not even consider prescribing Acto's saying it is a dangerous drug to say the least.
I am a big activated charcoal fan and swear by it for toxin removal, but it is a lightweight toxin binder and is considered a "supplement" that can be bought over the counter. It doesn't compare to cholestyramine.
Cholestyramine is nothing like it, although it works similarly by staying in the "gut" and the body doesn't absorb it, it is considered the best toxin binder there is - Dr. S has a pdf tha explains in the studies he has done that they have found NOTHING as good as cholestyramine and activated charcoal did not even compare,neither did Chitosan or other natural binders.
Our LLMd said that if you have mold exposure cholestyramine is the ONLY way to get rid of it.
You can start with one dose per day he said, instead the of the "normal" 4x's per day - it will just take 4 times as long too work. Chitosan depleted D in me severely after a month of use. Later I was found to be deficient in many minerals, magnesium (even though I had been doing orals for years, I was not absorbing them and I had to start mag sulfate injections), sodium, molybdenum (an obscure mineral needed for detoxification)just a few important minerals to name a few that are so important to wellness.
I have been at this for years and anytime something causes an "intolerable" herx, you have to stop...talk with your doctor and see if he/she wants you to continue.
Cholestyramine draws toxins embedded deep within the tissue over time and pulling toxins out, never feels good. But again, if it is intolerable...it is never good to continue w/o further advice. I also believe that if it eliminates anything bad, it can eliminate anything good. You can be become deficient in vitamins/minerals and on and on if toxin binders are used too long, such as my Chitosan experience.
Also, an elevated C3A can be a sign of autoimmune disease. Elevated C4A's are inflammation related to bacterial disease, an elevated C3A is inflammation related to autoimmune disease according to one of the previous presidents of ILADS that was my (seriously intelligent) LLMd for years. He would always test for Lupus if the C3A was elevated. He said many of his patients had both Lupus and Lyme...C3A and C4A tests must be routed by Labcrop to National Jewish Hospital for the most accurate test results.
Not everything is lyme/co-infections..I use to believe that for the first few years after diagnosis, but now, after years of experience I have learned that isn't always true. Although I do believe that ALL disease starts somewhere and possibly w/a bacteria like lyme, if not lyme itself or some other yet undiscovered bacteria, parasite or virus.
posted
Haven't posted in a long time but thought about you when I came across this site. GoodbyeLyme.com Under articles this Dr lists herbs that can be used to clear out lyme from the nervous system. I've had no luck with antibiotics(all of them) so am going to try the chinese medicine route for a while. If you decide to try this please keep me posted. I don't have the neurological near as bad as you but bartonella is a tough one for me and he has stuff listed for that too. Good luck with whatever you try. Liz
Posts: 383 | From Ar | Registered: May 2007
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I cannot tolerate Cholest. I took one packet 3 days ago and I am still a mess - all neuro. symptoms.
It happens each time I take it. Headache, vision problems (chronic flashing lights), body/bone pain etc....
It puts me into such a tail spin I don't think I will take it again - but I always say that and then end up taking it anyway to try to rid all the nasty toxins...It feels like an exorcism.. Posts: 151 | From North East | Registered: May 2011
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quote:Originally posted by lymebytes: Our LLMd said that if you have mold exposure cholestyramine is the ONLY way to get rid of it.
This is just not true. I totally disagree with your LLMD. I do not tolerate cholestyramine. Period. When I was sick, it was the herx. When I got well it was the crippling stomach cramping, which is a known side-effect of csm. I cannot take it.
I am using oregano oil and Dr. Natura cleanse to bind the toxins and keep them moving out. This is working. I'm not saying this is the best method, or even the first one to try, but it is the one that is working for me.
We're all different. There is no one size fits all treatment for anything.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
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Six, how can you be completely sure you're removing mold with this treatment six? Did a doctor confirm? I don't mean to be bothersome, it's just every time I read some of these posts, it seems so impossible to be this precise. Even the LLMDs have no clue on that piece.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Seek, no, there is no way to be 100% precise, even though I am 100% sure this is what's happening, but I have no "tests" to prove to others. I ASKED for testing to be done two years ago and the doctor had no clue what tests to run to see what kind of mold it was, so I had the mold tested.
I can only assume that since I have mold issues and since my detox organs got overworked first round judging by the pain that I hadn't had before the fungi/mold killing herbs, and since oregano is known to kill mold/fungi, that this is what it's doing.
Muscle testing confirms what's happening, but that's still not enough proof for many.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tickled1
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Since starting cholestyramine a couple of weeks ago, I am having terrible sore throats and my eyes are getting more yellow????? I have been exposed to a lot of mold lately though too. I feel so toxic. I don't see any way out of this. I've found some mold issues in my house but can't afford to move and have nowhere else to go. Husband doesn't believe how serious this can be. He is trying to be understanding but he is fed up with all of this just like me. I look in the mirror and all I see is yellow eyes. I'm about to give up. If it wasn't for my daughter.....
Posts: 2541 | From Northeast | Registered: Jan 2008
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momlyme
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posted
Please, get out of the house.
Then, take care of yourself, first. I had a vet tell me I was sick and needed to take care of myself when I was taking care of my sick dog and my sick son and ignoring my own health problems.
It's like they say on a plane... if the masks come down, put yours on first because you cannot help anyone else if you cannot breathe yourself!
The yellow eyes sounds like a liver problem... but I am no doctor!
17 hens posted a wonderful liver/bile duct protocol that is helping me.
I also take LiverLife & milk thistle for my liver.
Never, ever, ever give up.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Call your doctor about the yellow eyes, that is something he need to know about. You will not get better if you don't get away from the mold. Sorry to be blunt, but it's true.
What kind of mold issues? I mean, I have a bit of shower mold, that kind of thing, but if it's a mold problem like it sounds like, you need to do something about it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
So on a scale of 1 to 10 with 10 being the best how important is Cholestyramine if one can tolerate it. I am taking it every other day, one scope in the evening and have been for about a week, I am taking so much stuff that I am concerned about it binding stuff that I want to get in to my body if I take it more often.
I was told to start slow because of the issues in the posts above.
My son who is also infected has not yet started it and has been on mino for about 3 months with Flagyl on the weekends.
Should I inquire to the LLMD about getting him on it?
Thanks and All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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momlyme
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Cholestyramine has been very, very good to me.
I'd give it a 10.
Personally, I take the kind without sugar... the kind with sugar made me feel ill... but all sugars do that to me.
My son (12) won't take it.
He is taking other binders in rotation.
The whole family and the dog are on anti-fungals.
We had a MAJOR mold problem in our home.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I look at my child four years older now and get sad. This disease ruined my life. My emotions are dead from this illness so there's not even the benefit of grieving. It's like the ticks or whatever stole my soul. Like a shell of my old self. 
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