Cholestyramine

[mdmom]

I posted this on the Lyme board, but there's not much activity there these days....

 

DD13 was making good progress on IV treatment for co-infections and took a sudden turn for the worst 18 days ago. Her most severe and debilitating symptom is an unrelenting frontal headache. Nothing touches the headache - we've tried various OTC pain meds, Rx muscle relaxants, massage, chiropractic, epsom salt baths, Vitamin C/Magnesium/B Vitamin infusion.

 

Spoke with LLMD today and had a lightbulb moment....

 

The headache started after she visited a friend's house who just had their old bathroom completely remodeled. My daughter reported that the old bathroom was covered in mold. I'm thinking a big mold exposure hit her.

 

So it's the most likely theory, although we are going to do a CT scan of brain and sinuses to rule other out causes.

 

LLMD prescribed Cholestyramine for biotoxin exposure. I read Shoemaker's protocol on the use of this, but I'd like some feedback from you smart people out there on the front line....

 

Thanks in advance.

[mama2alex]

I am on a low dose of Cholestyramine (CSM) for mold toxicity, but will be going on the full dose as soon as we move out of our house, so I'll tell you what I know so far. My doctor has me take it on an empty stomach, at least 3 hours after eating, then eat a meal with a fair amount of fat in it - eggs, oils, meat, yogurt, avocado, nuts, etc - 1/2 an hour after taking the CSM. I can take supplements 15 minutes after eating. Full dose for an adult is 1 scoop 4 times a day. I believe children are dosed 3 times a day according to weight (read this in Shoemaker's first book). CSM can cause constipation or reflux, so watch for those. It can cause a herx in certain individuals, but I'm not sure what factors affect this - maybe having Lyme, not sure.

 

If your dd (possibly) had that severe of a reaction to mold exposure, I would consider testing to see if she is genetically susceptible and whether she is showing markers for biotoxin illness. The HLA genetic testing shows whether a person is genetically susceptible to mold, Lyme or both. For example, I am susceptible to mold, but not Lyme, and my ds is susceptible to both. This means that my body can detox Lyme toxins, but not mold toxins. His body can't naturally detox either one. This is important because it means you can kill the Lyme, but the toxins will circulate in the body indefinitely causing inflammation and illness. For mold, it means you can leave the moldy environment, but the mold toxins will continue to make you sick until you pull them out with CSM.

 

Markers for actual biotoxin illness include MSH, ACTH, MMP-9, VEGF, VIP, C4A, etc. These are described on the Surviving Mold website: http://www.survivingmold.com/diagnosis/lab-tests

 

Also, if anyone in the family with the moldy bathroom is having health problems, you should point them toward this information. The toxins given off by the mold will not leave the house just because they remediated the bathroom. They should do an ERMI test on their house to be sure its all gone.

 

Here's a good starter video on mold/biotoxin illness by Dr. Neil Nathan in Santa Rosa, CA: http://archive.org/details/4863-1-mcdhWellnesslecturemoldtoxicitydrnathan1

 

I am reading Mold Warriors, Dr. Shoemaker's first book on mold/biotoxin illness, and although he's not the best writer, it has a lot of great information that I'm finding is relevant to both mold and Lyme illness.

 

One more thing - if they find any plaques on her brain, this can be caused by biotoxin/mold illness, so it wouldn't rule it out.

[laure]

We also were on cholestyramine per ART doctor, but LLMD stopped it because he felt it leaches too many of the abx/herbals out at the same time, even with the 2 hour window for administering on each side. I'm sure there are other opinions/experiences out there, but for what it is worth we did not see any improvement with it. We are seeing slow steady improvement with new protocol (2 months now) with new LLMD though, so there is hope!

[mdmom]

mama2alex... Thanks for sharing your experience. The info is most helpful.

 

laure - so glad to hear things are improving for your daughter - I know it's been a long road for your family.

[Familyof5]

My family was on it for a long time. Full dose for my kids and me for a few years. It kept our bodies clean of toxins to allow us to pinpoint other food sensitivities we have. It brought us back from illness to recovery. I believe being on cholestyramine will help you heal faster. My children are very healthy now. None of them or myself have had a bacterial infection or even a virus for about four years. Their tics and OCD are barely noticeable and are triggered by food sensitivities. The chronic fatigue, tinnitus, headaches, focus issues, frequent urination, teeth grinding, sleep walking, memory issues, ADHD, sinus infections, pnemonia, irritability,balance issues, etc, etc, are all gone, and I believe it was because of our cholestyramine regime and the fact that we removed ourselves from toxic mold environment. I am a strong proponent for detoxing with cholestyramine to get to baseline faster and keep your immune system clear.

Edited January 27, 2013 by Familyof5

[JenniferG]

My family was on it for a long time. Full dose for my kids and me for a few years. It kept our bodies clean of toxins to allow us to pinpoint other food sensitivities we have. It brought us back from illness to recovery. I believe being on cholestyramine will help you heal faster. My children are very healthy now. None of them or myself have had a bacterial infection or even a virus for about four years. Their tics and OCD are barely noticeable and are triggered by food sensitivities. The chronic fatigue, tinnitus, headaches, focus issues, frequent urination, teeth grinding, sleep walking, memory issues, ADHD, sinus infections, pnemonia, irritability,balance issues, etc, etc, are all gone, and I believe it was because of our cholestyramine regime and the fact that we removed ourselves from toxic mold environment. I am a strong proponent for detoxing with cholestyramine to get to baseline faster and keep your immune system clear.

Does activated charcoal work the same way?