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Why A Fast Detox (Cholestyramine) Can Cause A Herx In Lyme Patients. Plus, Information On The Role Toxins Play In Our Bodies, And How They Cause Symptoms & Inflammation.

7/7/2014

113 Comments

 
I have been working on this post for a long time, gathering information and putting it together. It’s a bit long but VERY informative. Please take the time to read this, as I speak about why detoxing too quickly can cause us to get sick, and also how toxins specifically play a role in inflammation and symptoms in the body.

As it turns out it is possible to have too much of a good thing. Especially in those with chronic illnesses, you have to be careful when it comes to any form of detox or supplementation. Although it’s something that is good for the body, it can backfire if you go too quickly. In our bodies we collect toxins, especially as we kill off pathogens. If you have been in treatment for a long amount of time you might find that as time goes on your go-to detox methods aren’t giving you the same results. Keeping up with staying detoxed can become an issue, like it did for me. My Epsom foot baths, Burbur, liters of water, and even lymphatic massages just weren’t cutting it on their own. I would do all of the above aggressively and instead of getting a good detox I still had visibly inflamed kidneys and a painful liver. I ended up having to halt all forms of treatment or immune boosting supplements recently while I try to play catch up.

For those of you who have been there you might find that your doctor prescribes you a medicine called Cholestyramine. Cholestyramine is a powdery substance that you drink which is a vehicle for binding and removing biotoxins and neurotoxins. In fact this substance was originally created for those with high cholesterol, but is now used by the U.S Government to treat military personal exposed to neurotoxic chemicals. It is very effective, has few side effects, and does not leave the digestive tract, so it will not make its way into the blood stream. As your liver detoxes it dumps out toxins and sends them into the colon, where the Cholestyramine is able to sweep in, grab on tightly, and hold on until it can be excreted. It is especially beneficial for a detox plan because otherwise you risk the toxins being reabsorbed by the colon before it can make it’s way out, so you are left in a cycle where you work your liver hard to end up having a majority of it reabsorbed all over again.

Cholestyramine really is a wonderful medicine, and it can be purchased pure (without additives or sugar) from a compounding pharmacy, which I love. I mix it up with cranberry juice and drink it as directed. With that being said, it is also a VERY powerful medicine, and I wanted to discuss some important information about this protocol, which I don’t find to be readily available elsewhere. A lot of people discuss taking Cholestyramine and stopping it early on because it makes them feel worse. Many people will feel good for a few days and then end up flaring badly, and do not understand why. Truth be told that concept never made sense to me either. I sort of wrote those comments off as misinformation and didn’t think twice about it. It seemed impossible that something that is a toxin binder could do any kind of harm, right? Well I was wrong, as I experienced this first hand myself recently. In an effort to bring my toxin levels down my Doctor put me on Cholestyramine daily, and what began as the first 3 days being filled with energy, appetite and zest, ended with the 4th day going downhill fast. (Full disclosure I used to drink this religiously every day for the first year and a half of treatment, then fell out of the habit. During my first go around with this I do not remember if it flared me because at the time I was so bad off I didn’t notice).

I took to the World Wide Web to dig around about what was happening, and this is where I learned a wealth of information from Dr. Shoemaker, who created the Cholestyramine toxin binding protocol. I got a lot of info from the Biotoxin Wars page, and from Dr. Shoemaker directly. I wanted to share below the explanation as to why you get worst on it in the beginning. This conversely can apply to other powerful detox supplements as well.

Biotoxins from Borrelia are fat-soluble, meaning that they predominately reside in your fat cells. When you begin to use Cholestyramine (abbrev. CSM), it starts binding to the biotoxins in your G.I tract and sweeps them out of the body. Suddenly there is now “new space” for more biotoxins to move on down the line from the stored fat cells into this open area (your stomach). I envision this like a bucket that is too full. You can dump out some of the contents, which frees up space, but then it gets filled back up with more. This is what is going on in our bodies when we take CSM. We are expelling the toxins in the bile at a very fast rate with CSM, as it is incredibly powerful. And sometimes you can do this too quickly. When you get rid of too many of these toxins in a short period of time your body begins dumping large amounts of neurotoxins from the fat cells out into the body, quickly flooding you with a toxin overload. This is what causes the quick short-term relief followed by the fast sharp decline of health. This cycle can continue for a long time, and I will explain why.

These biotoxins bind to the insulin receptor sites on the fat cells. Once they are there, a switch is turned on by the body, which triggers and alters DNA, causing the fat cell to produce a powerful cytokine called Tumor Necrosis Factor-alpha, or TFN for short. This is why toxins cause so much inflammation in the body, because a presence of a lot of cytokines creates inflammation. In Layman’s terms, once the biotoxin attaches to the fat cell, the fat cell becomes a TNF producing factory. Imagine millions of cells in your body producing this powerful cytokine. In controlled amounts TNF is helpful and vital to the immune system, but in these large quantities these cytokines are responsible for many of the symptoms we experience. Too much TNF will make you feel terrible and is sometimes referred to as a “TNF storm.” This process happens to all of us with chronic conditions that have toxins, and it’s important to understand it so you can know what to do about it. Our fat cells are basically a refuge and hiding place for the toxins. They gather up there wreaking havoc but staying safe. Then once you get a little bit detoxed in your G.I system they run out there and fill up that space, and then even MORE neurotoxins fill up the newly free fat cells. It’s a vicious cycle that creates a hard situation. This is why we can get very backed up with toxins even though we are diligently detoxing as well as possible. Even those of you who do not take Cholestyramine can benefit from this knowledge, and what I am about to discuss as an option for help and relief.

Dr. Shoemaker knows that this process happens in our bodies, and that is why when he meets someone who has had Lyme for 5+ years (as he knows they are very toxic), he alters the protocol. He won’t just jump in and give this kind of patient Cholestyramine right off the bat. As I stated above, the biotixins bind to the insulin receptor site on the fat cells, much the way as insulin itself would. Therefore the protocol is to block the insulin receptor site, so that the biotoxins cannot bind to it. These biotoxins use our fat cells as a safe house so to speak, by latching on and collecting up in high amounts. When you take away their ability to latch on they can’t migrate and hide there anymore. Dr. Shoemaker prescribes a medicine called Actos, which does just that. It is used for people who need to block insulin receptor sites. He gives it to his patients to take for a week or two prior to starting Cholestyramine therapy, and then has them take it during the entire course of treatment with CSM.

Are there problems with taking Actos? In some people, yes, in others no so it varies person to person. For me, I would not be a good candidate. The function of Actos is to normalize insulin in type 2 diabetics, but those people who have low-leptin levels can have adverse reactions. In patients who are slim they often also have low-leptin (I fall into both of those categories) and it can cause blood sugar levels to drop too low. That’s why some people may not be able to take it.

So what can people like myself do? Luckily Dr. Shoemaker has a substitute route that can be taken. You can take high dose Omega 3’s, EPA and DHA. These are both powerful anti-inflammatory agents. EPA/DHA also plays a big role in reducing cytokines in TNF-alpha specifically. These Omega 3 oils in high concentrations can achieve similar results to the Actos with a much smaller risk of side effects. As a bonus they have many other benefits for the body. You must be using a high quality, high dose fish oil for this to work. It's KEY. I recommend Pure Encapsulations which is an approved option.

For now I am on a 2-3 week course of the EPA/DHA, and intermittently pulsating in Cholestyramine. Hopefully soon enough I can take it daily, and then work up on my dosage of it. Dr. Shoemaker says that those with Lyme disease will feel worse for up to a month or so on this protocol before they feel better. The EPA/DHA and Actos reduces this greatly, but can’t eliminate it entirely. So, if you are one of those people considering giving up, try and stick with it. The end result is wonderful, as Cholestyramine was a staple for me for a long time. I took its benefits for granted, at the time I didn’t realize how crucial it was to me and foolishly stopped when I felt better and didn’t think I needed it. What followed was a slow but steady accumulation of toxins that got me here where I am today. I am now paused on all treatment and waiting to get back on my feet.

Some other side effects of Cholestyramine which are common are acid reflux, which usually subsides in a few weeks. However, if you first mix the CSM powder in boiling water to dissolve it, and then mix it with your juice it helps greatly. Also, this can cause constipation so take it with a good quality magnesium malate/glycinate supplement or a good dietary fiber. And as always, what I write here is not to be taken as medical advice. I am not a Doctor, simply a girl trying to inform all of you on info I find to be important. I hope others can learn from my mistakes, since I am just learning as I go along through trial and error.

Xoxo,
Christina


 Sources: Dr. Shoemaker & BioToxin Wars

Update: I found a really great and comprehensive PDF on the protocol which might be helpful to some of you. I have linked it below, you can both open it and also download it to refer back to.
Cholestyramine Clinical Protocol
File Size: 110 kb
File Type: pdf
Download File

via: Hoffman Centre for Integrative Medicine
113 Comments
Patricia link
7/13/2014 10:18:19 am

I have a very dear friend who has Lyme Disease so I am always looking for ways to help. I am also a Founding Partner at IDLife which is revolutionizing the health and wellness industry by providing an online HIPPA compliant health assessment website where individuals can complete

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Christina
7/13/2014 04:40:38 pm

Hi Patricia! Thanks for stopping by, I'm so sorry to hear that you have someone close to you with this terrible disease as well. I checked out the website and it seems like that company you work for is doing really cool & awesome things for the health industry, I appreciate you sharing it :)

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will
7/27/2014 07:02:51 am

This was a great article. as i just stopped cholestyramine 5 days ago cause i didn't feel good. I thought maybe it was cause my cholesterol level was low or maybe a vitamin deficiency or something being removed by the csm other than toxins was affecting me. do u think this is possible? also, if it is from the toxins, and its the imflamatory response making me sick and not feel so good, can there be permanent damage? i guess what i am asking, is, if i can deal with not feeling good, is it ok to just do the csm. i don't mind feeling bad if the end result is i get better. i've been sick a long time, its no big deal now. i just want to know that soon i'll be better and i don't worry about short term fatigue, which is what i was getting. i know ur not a doctor, but if you have an opinion or think u have some insight to my questions, i would appreciate it. i'm a big boy and make my own decisions, but i would love to hear what you, an intelligent logical thinking person, thinks of my questions

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will
7/27/2014 07:06:50 am

also, thanks a lot!!! now i have to spend all my time reading ur other articles. Like i have not read enough since my diagnosis!! i'm tired of researching! lol!!! well, atleast i can assume after i read one of your articles, you already did the research for me! tks

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Christina
7/27/2014 07:13:12 am

Will,
Hi there! There is no long term bad effect from taking cholestyramine! It's an extremely safe medicine. The inflammation it causes is not anything that's permanent. In fact if you have a chronic illness you likely have experienced years of chronic inflammation in your body. I do recommend sticking with it because Dr. shoemaker himself says to stick with it, and give it at least 5-6 weeks (on the long end) and you will notice the bad symptoms subside.
Also, can I ask if you are taking this for toxin issues due to Lyme etc or for mold? Those who use CSM for mold are told that they will feel worse until they remove themselves from the environment that has the mold. So just a tip on that front!
And lastly you can also start slow and work your way up, you can take half the dose every other day etc and ramp up to the full dose if the symptoms are too much for you. I do highly recommend the fish oil in conjunction because that has helped me tremendously in lowering the inflammation in my body! I hope this is helpful you can email me if you want to chat more cskova01@ladyoflyme.com

Anne Gregory-Bepler
10/25/2014 03:16:55 am

Thank you for this insightful article that explains my experience on Cholestyramine. I will give it another try with high doses of fish oil. What dose do you recommend?

I am infected with both Lyme and Bartonella.

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Kevin
3/17/2022 08:28:31 am

How are you now?

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Dara link
11/6/2014 11:30:00 am

Thank you so much for this article! I've started and stopped CSM twice now and am starting up again tomorrow. My leptin is normal so my dr. didn't put me on Actos. But he didn't tell me about the fish oil. GOOD to know!

One question: while on CSM does it help or hurt to continue other detox practices such as taking milk thistle, phase 2 liver detox support, detox baths, saunas, juicing, etc. etc. I have mold illness and Lyme (my C4a is now normal - it used to be through the roof - so the infection is finally under control. think that's what that means). I also have the dreaded HLA mold gene and one for post-Lyme syndrome, plus a MTHFR c677t gene - so detox isn't at all easy for my body. I want to help the process along, but not overload my system. Thanks again for such a thoroughly researched post.

Btw - your morkie is adorable. I had a Yorkie years ago and now have Westies for children. I'm with you - I'd save them all if I could.

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Christina
11/10/2014 06:19:48 am

Hi there! Detoxing along side of this is definitely okay. It won't interact with things. However it will bind up medication that is taken 2 hours after it so just be careful of that. Also, as work any detox you can do too much but your body will be able to tell you if it's too much or too quick because you will feel much worse. I did foot baths & used burbur and got lymphatic massages while on it and it was actually very beneficial.
In fact, since Epsom salt baths work by stimulating the liver to dump bile out I would plan the cholestyramine appropriately by drinking it and doing the foot bath immediately afterwards so it could be there to catch and trap the toxins from the bile.

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Don
1/15/2020 07:11:08 pm

Epsom salts dont stimulate bile. It relaxes the liver ducts. Olive oil during a flush stimulates a tremendous amout of bile

Ian
2/9/2016 12:11:07 pm

I have the same genes and issues you do! Looking for any help with this!

Ian

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Vinay
5/14/2019 04:46:14 pm

Hi Dara, My son is having same problem as yours. He is having Mold/LYME and HLA mold/Lyme genes. We are having hard time giving any med or detox. Just wanted to ask how are you doing now and what did help you. Any tips will be appreciated. Thanks

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Kristen
12/4/2014 10:01:27 am

Hey, I just came across your site today and I have to say this article is very interesting for me. I am just about to start taking this med and I have had problems with what I believe to be high cytokines and also WEIGHT GAIN. Major. After reading this I think it is all connected. My weight gain is directly correlated by this tingly feeling I get in my body which I have been told is cytokine action. And the fact that they attach to the insulin receptors, it all seems to make sense. Would you agree with this or do you think there's something else going on? So far I have found NOTHING that has explained it and I would love if this might be the solution to the ever worsening weight problem that cannot be touched by diet nor exercise...

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Christina
12/4/2014 07:07:01 pm

Hi there! That would certainly make lots of sense. Toxins can do a lot of damage to our bodies, and if the two seem to correlate for you then that makes good sense. I don't personally know about this myself but I do know many people with Lyme has issues with weight gain the way you speak of it. I hope that this can help you in many different ways & will end up answering some of your questions!

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Kristen
1/7/2015 03:58:07 am

hey Christina, so I've been on the CSM for a month now I guess and got up to 4g once a day. But now I feel like I am putting on weight because I wake up bloated every morning! Like my food is not digesting. I am thinking the CSM is causing this. I am going to stop it for now because my goal is to get RID of this weight not put on more!!! Why does this have to be so hard... :( I did get a coffee enema kit and I think I'll be doing that a couple times a week, do you think that will get out the toxins and lower inflammation? I think CSM is a no-go for me...my digestion cannot take any more of a beating than it already has for the past few years.

Christina
1/8/2015 08:50:22 am

Hey there, this is in reply to your most recent comment (it wont let me post to that for some odd reason). A couple of thoughts... 1. Do you still go to places which might have mold or other neurotoxins such as paint, chemicals etc? I have heard of people feeling quite worst on CSM if they have not removed themselves from that environment. It's just a thought! 2. Perhaps you can scale down on the dose? I take a very small amount myself, I think 1/2 a teaspoon a day at bedtime and its powerful stuff. very powerful! Since it latches onto your bile that could be why you have trouble digesting since you need bile to digest. Another thing I could suggest (if you choose to stay on it at a lower dose) is to take a digestive enzyme with every meal. They have made a huge difference for me in digestion!

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Andi
12/8/2014 05:31:19 am

Dear Christina, I'm giving you a big cyberspace hug! Thank you so much for explaining this in such an easy to understand way. I've been sick with this insidious disease for more years than I can stand to even think about and at first I thought CSM was going to be a cinch. Just like you, all hell broke loose after a few days and for two weeks I've been frantically searching the internet for why. I was considering stopping this treatment when I finally found You! Now, hope is back and I'm back in the game again. Christina, I hope you feel better soon and this will be behind you like a bad dream. That's pretty special and kind of you to be thinking of others when you're not feeling well yourself. Thanks again.

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Christina
12/12/2014 11:09:22 am

Wow thank you so much Andi! I'm so glad that you stumbled upon this before you gave up. I hope that the CSM will yield good results very soon and that things turn around.
Wishing you all the best.

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Sharon
12/31/2014 04:43:44 pm

Does one need a prescription for CSM? And why is it done by a compounding pharmacy? If I go to my non-LLMD and ask her for a Rx. for this, how should it be written...what "recipe" for compounding? And dosage, etc. Thanks very much!

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Allison
1/28/2015 11:22:56 am

Thank you for the information! I'm almost a year into treatment for Lyme and my LLMD prescribed cholestyramine. I've only been on it for a week and I feel like it's definitely stirring up some neurotoxins. I have been getting panics and am even more emotionally sensitive than usual. Did you experience this or know if it is common with cholestyramine? Thanks!

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Christina
1/28/2015 03:27:27 pm

Hi allison! Did you get the compounded version or the one that is sweetened with sugar (or artificial sugar)? I ask because the "sugar free" uses aspartame which can give you neuro issues & the regular kind has tons of sugar which can also ramp up neuro stuff especially if you take it many times a day. So that's my first thought
Otherwise, if you haven't changed anything then it's definitely possible to be a detox reaction. Have you tried adding in fish oil daily to help?

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Joelle
2/23/2015 05:27:16 am

I have been diagnosed with a very old chronic Lyme infection plus mold toxicity. I have been on CSM for a month now. The first week I experienced crazy dreams and dream paralysis. I had extreme fatigue for the first 3 weeks and then had 5 wonderful days! My LLND then doubled my prescription to 4 pkgs a day (8 mg?) I now experience and extremely sore neck, jaw and teeth within 20 minutes of taking my meds. I am happy to live through this if I am getting ahead of the biofilm faster this way. I have been going through various treatments/diagnosis for the last 2 years and am just happy to finally be moving forward! My question is this. Is this better for my illness or am I better off with 2 pkgs a day instead?

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Joelle
2/23/2015 05:27:22 am

I have been diagnosed with a very old chronic Lyme infection plus mold toxicity. I have been on CSM for a month now. The first week I experienced crazy dreams and dream paralysis. I had extreme fatigue for the first 3 weeks and then had 5 wonderful days! My LLND then doubled my prescription to 4 pkgs a day (8 mg?) I now experience and extremely sore neck, jaw and teeth within 20 minutes of taking my meds. I am happy to live through this if I am getting ahead of the biofilm faster this way. I have been going through various treatments/diagnosis for the last 2 years and am just happy to finally be moving forward! My question is this. Is this better for my illness or am I better off with 2 pkgs a day instead?

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Christina
2/26/2015 07:04:20 pm

Hi joelle! I'm not a doctor but my personal experience is to down your dosage. Find a dose where you are comfortable and slowly ease up. I would say even a week or two at a time little by little (don't rush). Your body has been through a lot and has a ton of toxins so you want to be gentle with it. Also, can I ask if you have the regular Packets with sugar? They have quite a bit in them and that in itself can trigger neuro symptoms. I get mine pure from a compounding pharmacy & find that actually is much more potent. I only use 1/4 a teaspoon per dose and it does A LOT.
I would listen to Your body, there is no use in pushing yourself to doses which may be too high too quick. Especially with how quickly you experience symptoms it sounds like the medicine itself is doing something funky to your nervous system. The sugar free version has a fake sugar in it which is even more prone to create neuro symptoms so I recommend looking into that!

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Joelle
3/11/2015 09:46:09 am

Thanks for the reply
Christine. I did end up backing down to make life more bearable. Once I hit the plateau of feeling good for a few days I have added in the 4th dose. My neuro symptoms are mold related I am pretty sure but yes I am using the regular pkgs with sugar. I have heard that if you ask for Orange light then it dissolves much better in case anyone is having trouble getting it down.

karen
3/3/2015 11:02:17 pm

i have been diagnosed with mthfr gene a1298c, mold toxicitty and probable lymes from several years ago.i am awaiting lymes testing. my dr. has prescribed pretty much dr. shoemakers protocol. i am having a difficult time spacing my supplements, medications and csm apart to where they are not being swept away by csm. she said to take 3m-4 times daily. medications 3 times a day, food and csm, its difficult to work them all in at the proper time for best results. any suggestions? thank you for your research and i pray for your full recovery

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Christina
3/10/2015 05:14:41 pm

Hey there. I've never taken it 3x a day myself but I know some people wake up in the middle of the night between 1-3am to take a dose. During that time is when the liver works the hardest to cleanse and regenerate so adding it in in that time frame I've heard can help catch toxins. It's an option although a frustrating one. I've been told they put the powder by their bed and just wake up to pour water over it, drink and go back to bed. They also take one dose before bed. So that might help some perhaps? I always took mine before bed but it can be tricky to juggle!

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Joelle
3/11/2015 09:50:29 am

Hi Karen, I also take csm 4 times a day. At first I didn't find it a problem as I had zero appetite so food wasn't an issue and still really isn't. I take my regular meds at 6:30 am. first csm at about 8:00 am
supplements at 10:00 am 2nd csm about noon 3rd csm at 4:00 pm , 2nd supplements with dinner and the 4th csm at 9:00 pm .
Hope that helps you. I recommend you gradually up the csm as your body allows. Found out that the hard way;-)

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Melanie
8/28/2018 01:17:39 pm

I am being treated for Lyme and co-infection Bartonella and also Mold. I first tried the CSM from Walgreen it was loaded with artificial flavors and in the beginning they even gave me the "Lite" with nutra sweet which I was unable to take. Now I am using a pharmacy that uses no artificial things and it is expensive. Not to mention that NOBODY mentioned anything to me about CSM pulling out supplements so I only learned this from this blog. My doctor wrote out the script to take 1 tsp a half hour before I eat and before bedtime. I WAS taking my supplements with my meals and before bed because I didn't know about the 2 hrs...I am on sooo many things (about 35 to be exact) its hard for me to even figure out the best was to juggle all of this with the CSM....any suggestions?

Bill
4/19/2015 06:55:16 am

Hi Christina,

Thanks for the informative article, it is definitely consistent with other things I have read. Do you know if the same effects apply to Welchol?

Thanks,
Bill

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Christina
4/19/2015 10:37:16 am

Hi bill! I'm not familiar with welchol personally but if it works the same way with binding fats from bile then I would say it likely is the same mechanism!

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Beth
7/8/2015 11:30:51 pm

Hi Christina! I'm actually a victim of Mold Illness. I appreciated your article because I am considering taking CSM again but in PURE form. I ended up with a horrifying rash on my thigh from taking just one dose of Prevalite last year. Some may argue that it was just a herx, but with all those additives (achem - aspartame!), I have my doubts.

I've come to the conclusion that even if I can't fully kill my fungal infection at the moment (three years of life destroying agony), my liver is the source of most of my pain (i.e: worsening PMS, digestion, and pregnant-like bloating). I am hoping the CSM can take some of the burden off of her. I'll give it another shot!

Now if I could only heal my colonized sinuses :P

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James
7/10/2015 02:14:55 am

Beth - I too have the same mold illness (25 YO male). I was on the Walgreens version of Cholestryamine (loaded with sugar) for 6 weeks and saw NO results. I think it's solely because of the sugar.

Have you heard of Dr. Joseph Brewer's sinus regimen? I'm about to start on it - it cleanses the sinuses of accumulated toxins/biofilm covering them and flushed them out. Takes about 2-4 months to see significant progress. I figured that, coupled with CSM and other binds, will be beneficial in the long run and could prove to be the ultimate cure.

Christina - my insurance won't accept pure cholestryamine from compounding pharmacies. It's so odd because my insurance usually covers any type of prescription. Any ideas on where I can get some sugar free cholestryamine?

Great post, too - thank you so much for your help! I'm sure I speak for other when I say I really appreciate it.

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Christina
7/10/2015 08:09:00 am

Hi James! Cholestyramine (the branded one in the pouches) comes in what they call "Sugar free" which has no sugar but uses Splenda or Aspertame. That im sure is covered by insurance but I am not sure if it would be any better on the body with the fake sugars in it. Did your insurance deny all compounding pharmacies or just one specific one? If it was just one I would try a few more by calling around and seeing if any would be covered. I am unsure how much the cost is out of pocket if its affordable or astronomical, but the results with the pure cholestyramine make a huge difference!
All the best,
Christina

Beth
8/17/2017 06:20:44 am

James! Sorry I never checked back on this. I would love to know how the Brewer protocol worked out for you.

Christina
7/10/2015 08:13:26 am

Beth,
Oh goodness I am so sorry you have had to deal with Mold, it is amazing how much it can affect the body in crazy ways! And the burden put on the liver is huge! The pure CSM is a HUGE change from the ones with the additives, it really made a gigantic difference for me so I hope that it will help you greatly! I suffer from a lot of GI issues because of toxins and the CSM was helpful for that!

As James mentioned below there are some protocols for the sinus that you can try, I am not familiar with it myself but he may be of help for that?

Good luck!
-Christina

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Beth
8/17/2017 06:31:43 am

Hi Christina. I actually refound your page and found it amusing that I recognized my post. How are you doing these days?

I'm sorry to say that I'm a lot worse. About to send out test plates to see if my current home is also contaminated with mold. My endocrine system is a wreck - as a woman it's excruciating to see yourself aging so rapidly. I'm the same weight, but my body composition is deteriorating. When you lose muscle you lose ENERGY. I can tell the insulin is no longer able to get the glucose into my cells. I'm considering Metformin. A much as I'm scared of the side effects, I'm desperate to get back in shape.

I'm thinking about trying the cholestyrimine again. I'm just a bit concerned it will lower my already low cholesterol. Anyone who wants a good deal can try the Apothacary360 in Fort Myers, FL. They are offering it at 50 cents a gram.

Audra Fortune
9/25/2016 05:19:06 pm

Have you heard of Methyline Blue? It is an anti-fungal (blue dye) and supposed to be able to break up the biofilm. I originally heard of it being taken orally which I have done and think it has helped and seen visible stuff passed. Anyway, I started wondering about it for sinuses and found several studies in which they used it in peoples sinuses but usually for dye purposes so I know it is safe and I am using it very diluted - .1%. I have been adding 2-3 drops to Xlear sinus washes for awhile and think it just may do the trick. I've had 2 sinus surgeries and chronic sinusitis started back 30 years ago! May be worth a try. You can find some info on earthclinic.com

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Audra
9/25/2016 05:37:54 pm

Oh, I should have mentioned that I have been trying to fight yeast all these years with many natural methods and that I recently found out I have toxin issues my TGF Beta 1 is 10,800 and I have started CSM about 1 week ago. Since I have gut issues and have just been passing fats through I don't know if the Fish Oil is doing any good but I take Barlean's and 1 packed CSM (orange flavor that probably has sugar as my ND did not want me on the sugar free chemicals and I couldn't afford compounded) divided in 2 a day with no problems so far.

Audra
10/15/2017 01:16:48 pm

Update: I think the methylene blue was a miracle for me! I had year round horrible stuffed up with post nasal drip for literally 30 years! My eaustation tubes swell too and still do but my sinuses are so much better! I have a polyp that causes a little mucus build up on one side over night but it is clear or white now thankfully! I didn't use it for long before dramatic results. I should probably try it for a little bit again to see if I get any more improvement. It is making it hard to believe the results I just received that say I'm living in a house that says I shouldn't even enter

Bill N.
7/18/2015 02:50:37 pm

Just wondering where you buy your CMS? What doses of Fish Oil do you use and how long do you take the fish oil before you start the CMS? Do you keep taking the fish oil while you are taking the CMS

Thanks

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Christina
7/18/2015 02:54:04 pm

Hi Bill! Yes you take the fish oil for about 2-3 weeks prior to starting and also continue will you take the CSM the whole time. It's also good for the body so it should overall be a helpful thing to take.
I get the CSM from this pharmacy: https://www.rxandhealth.com/compounding/products
I have tried a few different fish oils, but I like the ones kept in the refrigerator best because it's the most pure (without additives)

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Megan Samson
8/5/2015 11:04:36 am

Hi,
I just wanted to leave a tip for any people finding it difficult to take CSM....the compounding pharmacy suggested I mix it with applesauce, and it has made a world of difference. No more stomach upset and it gives it a pleasant texture, no more lumps of grit clogging my throat. I've also switched to taking 2 double doses per day instead of 3-4 single doses, it makes it much easier to schedule around!

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Christina
8/14/2015 07:57:04 am

Hi Megan! That is a really helpful suggestion thank you! I'm going to give that a shot!

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Dan
8/25/2015 04:37:21 pm

Do you have to take fish oil or Actos for the Cholestyramine to work or are those just to reduce toxic symptoms? Also, what do you recommend taking with Cholestyramine to avoid constipation? Thanks,

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Christina
8/25/2015 04:45:29 pm

Hey there! No it's not required, it can just be helpful to reduce toxic symptoms. Also, I recommend magnesium such as Be Calm, drinking that before bed nightly can be really helpful!
All the best,
Christina

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lynne
10/13/2015 10:56:38 pm

I' love Calm...it has saved me!!

deb
9/6/2015 11:27:28 pm

Thanks for the great article Christina. Just wondering if anyone has the reverse problem with CSM- loose stools and going all the time (rather than constipation) ? My son 16 yo is on it for mold related illness and he hasn't had a normal stools since starting a a week ago. It has already helped the nasal problems but he is having fatigue and weakness as part of the mold illness and hope that the CSM helps. Thank you very much

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Christina
9/7/2015 04:55:48 pm

Hi deb! I haven't heard of having diarrhea with CSM, it typically creates constipation as it soaks up all the bile. Is he taking the kind in the Packets with sugar? It could be that some of the fillers or sugar are actually irritating his mucus membranes and creating diarrhea because of that. I would recommend seeing if a compounding pharmacy can make it pure (just sweetened with a bit of Stevia). That would likely help him!

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Virginia
9/14/2015 08:11:40 am

Very informative exchange. In the treatment of mold illness, i have been on Cholestyramine from a compounding pharmacy in FT. Myers, Fl. I find mixing it with prune juice really helps get it down, and keep my BM regular. If I get too loose I add fiber pills. The amounts of both of those I change based on how it's going. I mixed my dosages each night in small jars and refrigerate for the next day so they are ready.

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lynne
10/13/2015 10:54:18 pm

Christine
Thank you for this very helpful information. I am lyme positive n my ILADS dr feels certain. I have bartonella also. I took o e dose of csm and it sent much gallbladder into attack I have gallbladder disease already and if it binds to bilirubin this may be why? I'm on high doses of antibiotics n I know I need to detox.I also experienced my eyes feeling like they were darting bacon and forth very rapidly n had vibrating all over my body. It was trippy. Now I'm afraid to take csm. I can't take fish oil because it makes my gallbladder hurt any suggestions?
Thank you

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Christina
10/13/2015 11:08:05 pm

Hi there! I actually also had gallbladder disease myself so I can understand what you're dealing with. With that your gallbladder isn't functioning at the level it should be, so it's producing less bile. That's why eating a high protein fatty meal can send you into an attack; there isn't enough bile to digest it and it makes you sick. Because of that the CSM binding to bile and reducing the amount of bile you have even less and that could be causing the pain.
As far as the other side effects I would ask your doctor, because I certainly don't know about visual things like that but you want to make sure it's not an interactions of anything!
I would suggest you try a binding agent that's more gentle, perhaps Pectasol- C or Activated charcoal. Those are not as strong but they also don't latch on to bile and might be a better choice for you.,
I got my gallbladder removed and it gave me huge relief, I'm not sure if that's something you considered but once my gallbladder was removed it was the worst/most diseased gallbladder they have ever removed from a 21 year old (at the time)! And all from the Lyme disease, it likes to attack the weaker organs like the appendix and gallbladder, and it completely destroyed mine, I was functioning at about 10%. Crazy disease! I'm sorry for your troubles and I hope this was helpful in some way
God bless

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Mary
11/30/2015 10:07:48 am

Thank you Christina for this explanation. I myself was a little confused as to why CSM caused a detox reaction when it's binding to toxins. This article was helpful. Especially the explanation of why Actos is used. I treated mold symptoms a whole year and am just now starting to tx Lyme. I just wanted to add that I ended up getting really bad hot flashes and other menopausal symptoms on the CSM and all of them stopped after a month off CSM. I'm sure my situation was unique being that I am at the age where menopause may normally start anyway, plus I had already low cholesterol and I am very thin. Just something other woman in a similar situation may need to consider. How much fish oil/ EPA/ DHA did you take? I'm not sure what is considered "high doses? Thank you.

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Christina
12/2/2015 11:48:51 pm

Hi there! I took a liquid fish oil, and where the daily dose was 1/2 teaspoon I took 1-1.5 teaspoons! So just, higher then what is the recommended amount. But you can play around with it, and start slow, or see what your body tolerates!
Thank you for your feedback, it's definitely important to share experiences, especially since so little is known on how it affects people when used for detoxing etc.

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Natalie
1/17/2016 07:31:25 am

This is a wonderful post. Thank you for addressing this issue of why we get worse when we should be detoxing. I have tried cholestyramine and since being very ill for 22 years has made me very sensitive to so many things, I can only handle 1/32nd of a tsp. 1 x/day. I've been diagnosed with both chronic Lyme and mold illness, etc.
I can't take fish oil (histamine issues) but I'm wondering if anyone has tried metformin instead of Actos? I don't want to take Actos due to the increased bladder cancer possibility and I already have a ton of bladder issues and I don't love the idea of meds in general, but want to get better.
I found that I became extremely hungry over time on CSM even at this tiny dose. Was this because it was releasing more toxins which were binding to my insulin receptor sites?

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Christina
1/19/2016 09:40:16 pm

Hi Natalie! I also tolerate an extremely low dose of Cholestytamine too, but I always say that slow and steady wins the race!
I'm not sure why you have been more hungry since starting CSM but your theory is the best guess I have too. It certainly has to do with toxins and it must be affecting some part of the brain which releases hormones and controls appetite. I hope that you continue to get good results with CSM and can detox your body slowly but surely as well!

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Jan
1/19/2016 05:10:44 pm

Where are you guys getting RAW cholestyramine for compounding with Stevia? I am told that CSM is FDA approved and therefore covered by insurance WHEN sugar or aspartame are added to it. However, if you want the raw form in order to compound with Stevia, then it is FDA UNAPPROVED and therefore insurance won't pay for it. I have BC/BS and they won't cover it since it is unapproved drug. With or without compounding. It is unaffordable without insurance paying for it. How are you guys getting this?

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Dara link
1/19/2016 07:43:51 pm

This is where I get pure CSM. It's the cheapest place I found. http://woodlandhillspharmacy.com/

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Dara link
1/30/2016 02:26:11 pm

I started making capsules out of raw CSM which is making ALL the difference in being able to get all the doses in each day. My questions are - (1) should I adjust the timing of eating and taking meds since I'm taking the CSM in capsules, and (2) is there any difference in how effective it is when taken in a capsule? Thanks for your thoughts on this!

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Dara link
1/30/2016 10:56:59 pm

I'm using regular vegetarian capsules. They come in 3 sizes and I got the middle size. I take 4 teaspoons total per day (1 teaspoon 4 times a day - plain CSM without stevia), which fits into 26 capsules for the day. If I did it over I'd buy the largest size. The Capsule Machine is super easy to use, works perfectly, and it's way less expensive than having the compounding pharmacy make the capsules.

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Dawn
2/10/2016 01:33:04 am

Thanks so much for this helpful post. I lived in a house full of stachybotrys black mold (and lots of other molds) for 3 years and am dealing with pretty sever biotoxin illness from the mold and mycotoxins which can have many similarities to Lyme.I have actually read Dr. Shoemakers book surviving mold and tons of other materials from various people, Dave Asprey, Eric Johnson etc. I have to say that I am so grateful for finding your website. Even though I've read so much, your article added a lot of new understanding that I have not found anywhere else. Thank you!!!

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Britney
2/16/2016 02:54:05 pm

Can I take CSM on the same day as antibiotics just far apart?

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Rachel
5/26/2016 12:26:42 am

I took CSM for mould/lyme - I was told to take a tsp four times a day. I felt fine for the first few days and then the inflammation started to take hold. Day by day my muscles were burning and then the depression and anxiety started... I stopped taking it completely after 3 weeks and then things became even worse. Now 2 weeks down the track I am having panic attacks, severe depression and hot flashes which I have never had before. The muscle pain is unbearable and my regular pain killers are not even touching the side. I am 44 years old, so I will be approaching peri-menopause but still... I am really fearful of what I have done to my body. I am trying to detox but nothing seems to be settling down the inflammation. Please, please if you have lyme, never start off with such a high dose like I did. I had no idea how powerful this stuff is. Some of this could be partly due to my own fault in that I did not follow the amylose free diet at all.

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megan
6/26/2016 02:09:42 pm

i have conformed lyme,babs, thinking mold too. c4a almost 9000, c3a low, hla genes pointing to mold, low leptin, high tgf beta. anyways i just started the rx for mold and i'm feeling even more drained that normal. Im taking three packs a day. AM i doing this wrong?? i see ppl taking tsp and TBSP servings. My direction on rx are now slightly confusing.
Also we're planing to move (hopefully ) next year, not sure on the healthy environment right now

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Christina
6/27/2016 05:55:32 am

Hi there! The packets have sugar in them, so they can give people a lot of issues. Often most of us end up getting pure cholestyramine from a compound pharmacy because of this. Also, you could be doing too much too fast. I take a really low dose myself with results. I don't take more than a teaspoon per day, so I recommend moving way down and slowly going up to see what your body tolerates!

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Lillian
6/30/2016 11:07:00 pm

Hi,

Great article! I am 9 months into treatment and I'm feeling great, around 90%, but I still have this toxin issue to deal with. I herx horribly on 1 tbs of cholestyramine! And, I also herx after eating meals...do you think that is because the liver is dumping toxins then, too? I find taking charcoal/MCP is working pretty well, but my liver enzymes were high on my last labs and I also feel like my detox methods are not working well enough, so I'd love to get the cholestyramine to work......

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Paula Stein link
7/6/2016 07:58:13 pm

HI Christina.. great article and I believe you are the only person who actually wrote anything on this detail. I have 11 months of BVT treatment (bee venom therapy) and it is going well. But I have been in denail about my mold issues. I am currently on a protocol that include CSM (no actos) but I am herxing like hell and wondering whats going on. I had my friend buy the supplements from her expensive LLMD in her L.A. and I found the CSM online. I just went out and bought some Omega-3 by Nordic Naturals with EPA and DHA.. can you tell me what is considered a high dose? Thanks so much !!!

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Cara
11/6/2016 05:45:56 pm

I have been treating my mold illness for over a year and have had some success, but I a lot of stalling out due to reactions to some of the meds. I got all the way to the VIP spray, and then I think it made me nauseated at 9 sprays. I was worried about pancreatitis, so I stopped taking it. Then everything went wonky and my numbers went back up in my labs : ( THEN in trying to get better taking all my supplements and taking CSM 4 x Day, I got some kind of gastrointestinal imbalance/dysbiosis. For one month I have been battling a crazy gurgling, acidic tummy, with some pain. Burps, Farts, there was some diarrhea, and yellow BM. I am wondering if the CSM has anything to do with my gut going out of whack. I have some potential pathogens partying in my gut. The Genova Stool Testing says I my gut is not digesting fats. AKA there was a lot of fat in my stool. I am seriously ticked off, and have NEVER had ongoing gut issues. I seriously wonder if by binding the bile salts, etc if the CSM has thrown of my gut environment? My regular blood tests and CT scan of gut was all ok. What the heck....I talk to my ND tomorrow.

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Audra
11/6/2016 09:30:46 pm

Hi Cara,
I am moldy too and have been on CSM for only a month or so, but wanted to tell you that both of my Genova stool tests (done before starting CSM) say the exact same thing as yours - too many fats are passing into stool and my ND says this means I am not absorbing nutrients well either. The first one showed more issues, so we are making some headway. I have been taking enzymes with Oxbile and others, but the Oxbile is supposed to help with the fats and Milk Thistle. Originally, she thought I needed have less stress especially when eating, chew a lot and don't drink too much at meal time to dilute the enzymes. She has now decided that the liver enzymes might need more help. So started a Lipotropic Detox. Oh, she realized the liver may need help has to do with the fact that I don't methylate well. Have you been tested for that? She says that the CSM shouldn't be effecting my cholesterol or fats if I am taking it an hour away from meals. That it only collects the toxins and passes right on through and doesn't stay in or alter the gut. Thankfully, with probiotics and some supplements we have improved my dysbiosis and I have a better diversity in the gut now and hardly any gas and constant constipation I used to have. Hope this helps a little. I'm sure your ND will help you out! Maybe ask about methylation.
Best of luck!

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tim
12/30/2020 03:32:52 pm

Your doc seems a bit uninformed. CSM binds to your bile, which is used to emulsify fats, and eliminates it from your body. Along with it, it removes cholesterol. Since your body makes cholesterol it may not go down, but it could. Has nothing to do with when you take it.

Christina
12/3/2016 12:44:45 pm

Christina,
I just found this information delving into my diagnosis with Lyme and extreme weight gain. I stumbled upon Dr Shoemakers info and asked my doctor to prescribe cholestyrmine. It all makes so much sense. I've never had a weight issue let alone in my waist. It's horrific. Then I found your info. So do I need to take Actos first for two weeks? And where is Dr Shoemakers exact remedy I think I only saw a portion.

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Christina (ladyoflyme)
12/6/2016 05:17:27 pm

Hi there! Here is a great PDF that I believe can answer your questions!

https://www.hoffmancentre.com/assets/files/pdf/articles/cholestyramine_clinical_protocol-july_4th_2011.pdf

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Marvae link
2/11/2017 05:07:23 pm

Thanks for the great info. Just started Cholestyramine... even though I am not a fan of drugs and prefer more natural means. My doctors hope is that it will help with the various inflammation issues I am still experiencing even though over all I am feeling good. Not excited about the feeling yucky you describe a few days into it. I am wondering... does Bentonite Clay accomplish the same thing? Can you take both at the same time? Help! :)

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Christina
8/17/2017 04:28:06 pm

Bentonite clay works similarly, but it isn't as strong as CSM. I would think in theory they could be taken at the same time but I would worry about constipation if you used both. You also would have to space them far enough apart so that they dont soak the other one up. But you should definitely ask your Doc, they would know more than I of course!

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Andi
5/16/2017 01:04:23 am

Hi Christina,
I last spoke to you in 2014 and am wondering how you are. I hope you are feeling much better these days.

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Lysa Kelly
9/11/2017 02:22:49 pm

I have lyme and also CIRS with mold present from a Neuroquant MRI and also the biotoxin gene which is switched on. I started Cholestyramine, just one dose a day for first two days and had the worst emotional reaction. It made me so agitated and angry, I smashed a vase! I have never behaved like this. I stopped after two doses and even three days later, I feel very weepy and low. I recognise this as a liver response. I am guessing the CSM is too strong for me. My Shoemaker certified doctor doesn't used ACTOS due to the potential link to bladder cancer.

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Christina
9/13/2017 02:15:15 pm

Lysa,
I'm so sorry about your scary reaction from CSM! I hope that you are feeling better a few more days out. If you do decide to give it another try in the future I definitely recommend the Fish Oil trick 1-2 weeks prior to starting, and then starting at a lower dose. Although you only took 1 dose a day, that 1 dose itself might be too high. So maybe trying to half that dose size would also help it to not be too intense.
I hope you feel better soon from this flare up!

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Sara link
10/15/2017 11:29:34 am

Thanks for this post! I just started the Cholestyramine yesterday and didn't know anything about the additional supplementation; I'll definitely add a fish oil and probably curcumin too to help minimize herxing :)

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Karen
1/11/2018 10:27:16 pm

Hi, there. Thanks for the article. I'm wondering, since you were on CSM for a long time, if you noticed a lowering or disturbance of hormones (irregular periods, etc.). If CSM binds to cholesterol, and cholesterol makes our hormones, I'm wondering if CSM can create some problems in that area.

Also, did you have any issues with diminished bile, or any bile related issues, since CSM binds to the bile? Thank you!

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Christina
1/12/2018 02:10:26 pm

Hi there! I've been on the birth control patch for about 10 years so I had pretty regular periods & I didn't notice any difference in that regard. I do have thyroid issues (Hashimotos & Graves) which then cascade into other neuroendocrine issues, but they didn't worsen or improve while on CSM. It all stayed pretty much In my normal baseline for me.
As far as bile goes, I have my gallbladder removed so in that regard it was a bit of a help because it soaked up any excess bile. But I didn't have any added digestion issues, or bile reflux or anything of that nature while on it. I always use digestive enzymes with my meals (then and now) so perhaps that helped! If you are worried about soaking up too much bile & it possibly messing with digestion then I definitely recommend using some enzymes!

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Karen
1/12/2018 02:27:48 pm

Thank you for your reply, it makes me feel a bit better about staying on CSM long-term (I'm glad you didn't have any issues with CSM). Thanks for your informative web site!

Brooke
3/22/2018 10:30:07 am

Hi there! Great article! It was written long ago but after months of research the easiest to understand. The article is from 2014. I’m curious if you still take CSM or how long? I’ve had the pure form for 3 months and too chicken to take it! I’m going to start slow. I’m thinking of doing the fish oil first.
My question is...you took for 2-3 weeks before the CSM and then during the CSM. How much and did you take it apart from the CSM? I did ask Dr Shoemaker if I should take fish oil and he said no but I’ve heard too many say it helped. I’m going to try it.
Also, did you have any sort of depression or anxiety and feel the CSM helped? I never had either of these until my exposure to toxic mold.
Hope you are still doing good! Great blog!


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Christina
7/11/2018 06:14:22 pm

Sorry for the late reply Brooke, I just saw your comment! I am not still on CSM but I do take it sometimes if I feel extra herxy because it’s a quick and reliable binder to use. I hope you were able to give it a shot and hopefully it was helpful for you!
I took it while I was also actively doing treatment for Lyme and Bartonella (which made me herx a lot) so it’s hard to know what it helped with since I had a lot going on. But it kept a lot of symptoms at bay or helped them not be so intense by soaking up some toxins. If the anxiety issues started with the mold then getting the mold detoxed out should definitely give you some relief from that!
In terms of when to take fish oil, treat it like any other medication and wait the allotted hour or two before/after CSM
-Christina

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Zach
7/11/2018 04:30:39 pm

Hi Christina, I see you've continued to reply over the years, so I'm hoping you'll see this. I've been doing research of Cholestyramine since my wife has been prescribed it, and she wants to make sure it's safe. I've found lots of good info so far, but I was wondering if you remember your source for the military using this for soldiers exposed to neurotoxins. I've seen several people mention that, but haven't been able to track down its origin. I would really like to read more about that, since I'm sure it would include useful effectiveness information. Thanks for all the helpful info!

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Christina
7/11/2018 06:10:30 pm

Hi Zach! I heard it in a lecture by Dr Shoemaker, but I honestly can’t recall which one because it was so long ago. It was a lecture or talk he gave where this was mentioned. As far as his source I’m unsure of that, I’m sorry! I’d love to read the origin as well, so if you do happen to track it down please let me know! I wish all the best for your wife!
-Christina

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Zach
7/11/2018 06:12:00 pm

Thanks for the quick reply! That at least gives me a direction to go in :) I'll be sure to come back and let you know if I find anything! And thanks for your well wishes!

JoAnna
8/1/2018 11:19:49 pm

Thank you so much for this post. I have mold toxicity and started one dose/day for the last week. I’m having what I can only describe as bipolar episodes feeling manic. I’m scared to keep taking it because of how it’s altered my mental state. What a mess!

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Ruth
8/18/2018 07:32:31 pm

The mold toxicity might be causing some of your mental state, it has been linked to depression. I know I just restarted taking CSM because I think mold toxicity is what's been causing my severe depression (not like me at all, I actually quit my job and thought I was losing my mind). But the reaction I'm having to the CSM is worse than what I was feeling in January. That's the hardest part of trying to detox, but keep your chin up, it does get better. If you're working with a doctor you trust maybe you can get suggestions to balance out your doses.

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Arturo
1/10/2021 04:36:08 pm

JoAnna, I see that you posted this a few years back, but I'm hoping you see my reply. I just started on CSM for mold toxicity & initially felt what I can best describe as a very mild mania (& I do not have bipolar disorder). I googled CSM & mania & found your post. I would love to connect & compare experiences.

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Matt - Wisconsin
8/23/2018 02:24:59 pm

First, thank you Christina! Providing this resource is a gift to many. I'm 6'3" 180 and have been an athlete and outdoorsman all my life. 5 years ago I started feeling un-naturally fatigued and began experiencing joint pain, palps, stiffness, GERD and bloating. After dealing with it for 3 years, I started having tests, dozens and dozens. I was "diagnosed" with CFS, POTS, GERD, LGL Leukemia, Fybromyalgia, Tinnitus, Lyme, Encephalopathy, SIBO, Sinusitis, and Asthma. Nearly all requiring some sort of Pharm. Decided to take nothing and go holistic. Started on all organic, raw food and juice, with 48 oz. of fresh carrot juice every day. In less then a month, I had such bad brain fog and pressure, I was nearly dis-functional. I stopped the raw and carrot juice within a month, and have done 100% organic combined with many other holistic protocols. That was over a year ago and the head fog persists every day. THE POINT IS... DETOXING TOO FAST CAN MESS YOU UP! I am still paying dearly, with compromised brain activity. My newest doctor just started me on Cholestyramine, and after about 4 days, my brain fog, ear ringing and fatigue spiked dramatically, he said keep taking it, of course, I have stopped until I can recover. Your blog is so helpful, and I will take it slow and include the Omegas.

Within one month, I caused my brain fog, and it hasn't subsided in over 18 months, has anyone every heard of that happening with a raw diet, massive amounts of carrot juice, and a handful of immune boosting detox supplements? I would be very curious to know. Kindly, Matt

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tim strickland
12/30/2020 03:48:34 pm

Hey man, I've tried juicing intensely at times over my 13 years with "CFS" (I now know it's CIRS). I too would feel like shit, and CIRS explains it. Juice Doesn't bind bile, fiber does! If your body is throwing out toxins in bile and reabsorbing almost all of them, you're really poisoning yourself. The juice probably didnt do you any harm (When I drink loads of veg juice while eating plenty of fiber its ok). The fact you react to a binder the way you do is also proof you have CIRS. Otherwise, cholestyramine is completely inert and may only make people constipated.

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Toxic Rick
7/21/2019 02:58:28 am

Hi Christina, appreciate the thorough and informed article! Had experienced this in the past with heavy dose CSM for a week so stopped. Will give it another shot slowly and dosing up on Omega 3s first, planning to do CSM some nights and then coffee enemas the following morning.. all the best hope you have a full and speedy recovery!

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Christina
7/26/2019 12:42:23 am

Hi there! I hope you will have more success the second time around with the omega 3’s and some coffee enemas on board too!

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margaret kirk
8/13/2019 09:48:04 am

Thank you for this! Starting CSM (compounded-no sugar) this week. Have you or anyone you know had the severe symptoms of constant brain pressure helped by this protocol? Thanks so much!

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Amy Lane
8/13/2019 10:56:25 am

I am so grateful I found your blog! I have been struggling constantly since finding out out I have multiple types of mold in my body. I'm down to 110 pounds and have severe brain fog and fatigue. I feel worse now than before I started the detox process! I have MTHFR MTRR and other genetic factors that basically mean my body does not detox on it's own so I've probably had mold for years if not decades. I am in my late fifties and worry if if I can ever get well and feel better. I have never in my life been so depressed and anxious. I'm fighting to get better but I wonder sometimes if I may be wasting the time I have left to spend with those I love? I just hope that the time I'm losing now I can gain back and then some on the back side of this roller coaster journey I'm on? Are there any in house treatment centers that someone knows of? I'm feeling desperate and defeated.

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Kate
12/30/2019 11:56:53 pm

Hi Amy, I'm in a similar place. Don't give up. Sounds like we may be onto something here. Sending good wishes and hoping you have improved since posting.

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margaret kirk
8/28/2019 10:41:53 am

Thanks so much for all this info. I have recently started csm, slowly working my way up to hopefully reaching the 4grams a day recommended by Dr. Nathan. Too many symptoms to list over a 20 year period but my absolute most severe is 24/7 horrific head pressure, never subsides only worsened with treatment. Has anyone ever recovered from this?? (already treated heavily for lyme/co-infections, tested positive for mold) I've searched far and wide and have never seen hope. Thanks for any guidance. Peace.

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Dan Khwaja
3/22/2020 02:39:05 pm

This is my exact same issue. I have an insane pressure in my head and I cannot do anything. I started the CSM a week ago.

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Kristen
10/9/2019 11:05:48 am

Thank you for so much great info. I'm on day 4 of drinking Cholestyramine and I'm concerned about the warning about teeth. So I called the compounding pharmacist this morning and she looked it up and said yes, it says it can discolor teeth and cause tooth decay! Yikes! No one has had any trouble with this? it seems like quite the risk!!!

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Kate
12/31/2019 12:04:00 am

Hi Kristin, thanks for sharing that bit of info. Have you continued the treatment? Did you experience this side effect? I guess I'm so sick that even if it meant all my teeth would fall out, i'd do it if I could feel better and regain previous physical and mental functioning! But I've had enough nasty health surprises, so knowing what to expect is HUGE. Thank you.

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Brittany
1/6/2020 01:03:58 am

I just recently found a ton of mold behind my kitchen sink due to a leaking pipe I’m guessing this may explains my 25+ symptoms of random weird thing going on With my body including serious fatigue and bad migraines. Been to two different PCs and neither of them take mold illness serious. I Am starting to look and feel crazy. :-(

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Daniel link
1/15/2020 02:51:10 pm

Margaret,

Do you have an email address I could reach you at?

Reply
Daniel link
1/15/2020 02:55:51 pm

Was curious if any one has a take on the Sponaugle Clinic in Florida. I'm sure the prices are sky high, but wondering if anyone knows of anyone having treatment here.

https://sponauglewellness.com/dr-sponaugle/

Reply
Christina
1/15/2020 03:50:07 pm

Daniel,
I would NOT recommend that clinic. I had 2 very close friends who went there and got very ill. There’s a whole support group for people who got more sick from that clinic who basically treated them like lab rats. The glowing reviews are also shady but they are quit litigious so I won’t say more.

Reply
Daniel Khwaja
3/22/2020 02:42:21 pm

I have had non-stop pain in my head for nearly a year. I did a 100 blood tests, a lumbar puncture, head, neck, and cervical spine test. Finally, I tested positive for four mycotoxins which include fusarium, aspergillus, pencillum, chaetomium globosum.

These are molds. I have had inspectors in my house and they have found no mold. I am moving anyways because I feel like i have no choice. Has anyone found mold exposure from anywhere else other than their environment? I just cant make the food connection.

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Lotta Jansson
4/7/2020 10:44:16 am

Daniel Khawa.
I used to live in mold for 10 years 1983-1993 and had/have mold in my chronic rhinosinusitis. Got sick years after that. I have CFS/ME diagnosis now but also positive tests for ochratoxins. Have pressure in my head 24/7. What I want to say is you could have been exposed to mold way back and still have problem with it.

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Garrett
5/11/2020 05:29:10 pm

Hi Christina great report this has brought some light to my current situation. Iv been sick form mold from living in a place for 3 years before finding out everything was related to mold I have not done a Lyme test tho crossing my fingers it’s just mold. I went 3 months on the generic brand because insurance payed but was a waste of time. I just started to actual CSM and it has f ed me up put me on the couch and feeling worthless I can’t even make it to work. The muscle twitches have been none stop along with depression cognitive issues and joint and muscle pain/stiffness. I stopped taking it for a week and my stomach got messed up. I am now going back on I am also taking glutathione and fish oil and some adrenaline support with a few other things I am also doing hydrogen peroxide therapy. I might do some ozone iv also. It has been one hell of a ride I can’t seem to explain to anyone. I am also non shoemakers diet. I’m hoping I can got over this hump soon. I wanted to thank you for the time you have taken in sharing this information and still continue to share. I also wanted to see how you have been and see where you are in your recovery it has been some time since you originally posted this. And I’m a sucker for hearing people’s recoveries.

Kaitlin
7/18/2020 11:54:59 am

So thankful for this post. I'm on day two of my compounded Cholestyramine. I am super sensitive to the world, so was thankful to purchase the pure substance. Thankful for your insight on this subject. I've heard lots of information on this product, but this was the most well rounded. Appreciate your knowledge, Kaitlin

Reply
Angela
10/22/2020 11:26:56 am

Hello there! I am about to begin the CSM and just wanted to know how much fish oil do you take daily?
Thanks

Reply
Kate Hendy
3/2/2021 04:24:10 pm

I am trying to get pure compounded CSM but I live in the U.K. and can’t get a prescription. Can I get this from the pharmacy you use in the US or can you help me find somewhere. I am just about to start the questran but it is full of chemicals and sugars and know I will react to this. Any help would be amazing. I have been ill for 10yrs and just found out I have CIRS and mold toxins and bio toxins illness. Thanks Kate

Reply
CK
8/28/2022 07:30:30 am

Hi Kate, me too, did you ever find out?

Reply
chris Jackson
7/23/2021 05:46:46 am

Anyone who has to take very lose dose CSM should consider this: hyperchloremic acidosis, read the link at the bottom where it says: "medications are known to induce hyperchloremic acidosis and should be avoided or used with caution. Gastrointestinal bicarbonate loss is known to occur with calcium chloride, magnesium sulfate, and cholestyramine". Renal impairment (Kidneys) are the likely probablem . Mold illness causes Kidney stress, so does mercury (dental fillings) so get those removed.

Reply
chris jackson
7/23/2021 05:48:21 am

Sorry, here's the link: https://www.ncbi.nlm.nih.gov/books/NBK482340/

Reply



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