Cholestyramine, chitosan, chlorella etc are often recommended to get rid of the chronic neurotoxins. But how do they actually work? I mean, when the toxins are stuck somewhere deep in the tissues or nerves or wherever, what makes them come out of there? I mean, those binders dont go there to get them do they? Dont they just go through the intestines? Maybe someone could explain this to me.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
just moving up for input
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My understanding is that the biotoxins are pulled into the blood stream from body tissues, not unlike metal chelation. Apparently biotoxins love fat.
I take cholestyramine, then eat something with fat in it 1/2 hour after taking it. The toxins bind with the cholestyramine and are expelled in the stool. Some doctors give actos to lyme patients to help with unpleasant symptoms that this protocol can cause. I take actos and have done fine except for a little swelling in my ankles from the actos.
I take 3 packets of cholestyramine a day. If you are on abx, as you kill bugs, you are creating biotoxins. My understanding is that the biotoxins themselves create many of the herx symptoms that people get on abx. If you've been infected for any period of time or have been exposed to mold and have been unable to get rid of the toxins, you will also have old toxins that are making you sick.
You may want to research what is effective before deciding which product to use. I just read in one of Dr. S's books (not Shoemaker) that Chitosan may not be that effective. I think the jury is still out on that. I've heard that pectin is effective but don't know for sure.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I'm interested in this also, and would like to hear from people who are using chlorestramine.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
posted
According to the book, "Mold Warriors", cholestyramine isn't absorbed into the body. It binds cholesterol, bile salts (and probably toxins) in the intestine, preventing reabsorption further down in the bowel.
My daughter did the protocol w/actos two years ago and was nearly symptom-free for a while. She had terrible gastric problems - one of her first symptoms. She maintains detox now with German homeopathics. These have done what 5 gastroenterologists could not do - stopped years of reflux, vomiting and alternating diarrhea/constipation. If she stops them, gastric problems return because she is still infected with borrelia and bart.
If you are thinking of doing the CSM protocol, take the visual contrast screening test online beforehand. Then retest after treatment. We all took the VCS test and all tested positive. After my daughter's treatment, she tested negative. The rest of us were still positive! I was slow to accept "out-of-the-mainstream" modalities before we started this journey. But CSM treatment changed that!
When I recently had an allergic reaction to a new medication, then a reaction to prednisone, I told the doctor that I suspect I have built up a high level of toxicity. He just gave me that glazed look, nodded and went back to his "we don't know why these things happen" demeanor. I really do think many doctors take their bag of tricks from medical school and never add to the bag or entertain a new thought again.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
BartonFink:
quote:So has CSM been helpful to you?
I'm pretty sure that I wouldn't be able to tolerate abx if it weren't for cholestyramine. When I was a child, my mother and I came down with something that no one could figure out. I had high fevers, seizures etc.. The doctors put me on penicillin and teramyacin but both made me very sick and the doctors told me I was allergic to those abx. Over the years, there were very few abx that I could tolerate without constant vomiting and other really unpleasant side effects. I just thought I was allergic to most abx but when I found out that I had lyme and learned more about it, I understood that my reactions were probably due to killing lyme and co-infections and my inability to get of the debri/biotoxins.
I am on 2 abx, 2 babesia meds and a yeast med and while I am pretty sick, I can at least tolerate them. I never thought I would be able to tolerate these kinds of meds.
It would be easier to tell just how much cholestyramine were helping (besides keeping me on abx) if I had taken it for a longer time before I started abx because the use of abx creates more toxins that need to be removed. Also, I have a problem with mold in my bathroom right now. This is another source of biotoxins besides the biotoxins that are created as a consequence of having a lyme infection. This complicates things because it will be hard to tell just how much this treatment will help as long as one continues to be exposed to these toxins. I did notice a difference when I went from 2 envelopes to 3 in that I had a little more energy and felt less fluish.
I believe that I am in the 25% of people who are unable to adequately get rid of biotoxins and probably other toxins as well. My sister had the genetic tests and was told that due to her genetics, her ability to get rid of lyme toxins, mold toxins or toxins from a spider bite is impaired. My LLMD feels that I also have problems getting rid of toxins and based on my treatment response and some tests that he ran and I'd have to agree.
I did do the Visual contrast sensitivity test and it was negative. Unfortunately, like all of the other tests that we have to deal with, these tests are not 100% accurate.
Even if you are able to adequately get rid of biotoxins, killing bugs will create a flood of them and I think most everyone would benefit from helping their body get rid of them while on abx and making sure that they are not exposed to more through mold exposure.
I also needed something for removal of intracellular toxins based on tests that my LLMD ran. Apparently I was killing lots of bugs and my cells were full of debri. I am taking Pekana drainage remedies for that. Both babesia and bartonella live inside the cells and I have both infections so this makes sense to me.
lymeout - so glad to hear that your daughter is better. What homeopathic remedies are you using for detox?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Terry, My daughter is using the Pekana products as well. You are the first person I have encountered who is using them! We probably have the same doctor. Do you use the cholestyramine in addition to these? Cindy
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
posted
Hey Terry, could u tell me what tests those were on the intracellular....oh crap i forgot already(lyme brain). Anyway, Im taking cholestyramine, went off it for alittle while as it was so hard to take other stuff with it. I too have a terrible time with GI stuff and ingesting oral ABX. I also tested negative on the VCS but while I was doing it it was so uncomfortable, have afterimages and weird light sensitivity things so I have no Idea how I passed. How much do u take since u take it 3 times a day, and how do u space it with your other meds/supps?
-------------------- Ill since 1998 DX 2005 Posts: 93 | From tampa, fl, usa | Registered: Apr 2007
| IP: Logged |
Took Actos for 1 week prior and then 3 days after starting on Ch. Actos made a huge difference in herxs but I still herxed.
Cried a lot. My VCS test also came out poorly.
I think the medicine is a pain in the hinny to take but is worth it.
I feel a lot better on it. Skooch
Posts: 88 | From Carnation | Registered: Feb 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote:lymeout: We probably have the same doctor.Do you use the cholestyramine in addition to these?
My LLMD is on the West Coast. Yes. I started actos first, then cholestyramine and then when we determined that I had a problem with intracellular toxins I was told to take the drainage remedies. The drainage remedies made me VERY sick for the first month, probably because I was so toxic.
quote:amberlin96: Hey Terry, could u tell me what tests those were on the intracellular....oh crap i forgot already(lyme brain).
It was a test called a c3d immune complex. I was told that many lyme patients are abnormal but mine was very high. The only thing I could find that seemed to relate to my situation was a slide presentation that didn't go into detail but looked like they possibly associated elevated levels with a herx. http://www.lymediseaseaction.org.uk/conf2006/meer/img26.html
quote: How much do u take since u take it 3 times a day, and how do u space it with your other meds/supps?
1 pre-measured packet of 4 grams of anhydrous cholestyramine resin in 5.5 grams of powder, 3X per day. My doctor didn't give me any special instructions but I looked it up on-line and found this program to make the most sense, then double checked with my LLMD and he approved of it. I take it one hour after any other supplements or food. Then wait 1/2 hour and eat something with fat in it. Then wait 2 hours before taking any other supplements/meds. It is not easy getting everything in because I take a lot of things that need to be taken alone. I take pills many times per day.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
I just have to count on you fellow patients. 
Printer-friendly view of this topic