Lady Of Lyme said...www.ladyoflyme.com/blog/why-a-fast-detox-cholestyraine-can-cause-a-herx-in-lyme-patients-plus-information-on-the-role-toxins-play-in-our-bodies-and-how-they-cause-symptoms-inflammation
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 anymore. I would do all of the above aggressively and instead of getting a good detox I 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.
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 magnesium 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.