cholestyramine and mold

[searching_for_help]

Has anyone used cholestyramine to detox from mold? DD has HLA gene for mold, and we are considering starting this. The RealTime mycotoxin test will run $700 - so we're not even sure we want to do the test, but hate to use the Cholestyramine without knowing for sure.

 

I really don't know anything about it, which makes me a bit nervous. Any feedback from your experiences would be appreciated.

[NancyD]

Cholestyramine is the preferred treatment for mold toxicity.

 

Here is a link to a lecture on mold toxicity:

http://mendocoasttv.org/mcdhWellnesslecturemoldtoxicitydrnathan1.html

 

I'm taking my DD to his clinic in CA for a week of treatment. I'm pretty sure they will start her on cholestyramine for mold toxicity, as well as IV abx and nutrients for Lyme and co-infections. They had DD do the RealTime Labs mycotoxin panel as well as the Shoemaker panel.

 

Perhaps SF_Mom can weigh in on your dilemma.

[LNN]

cholestyramine is on our list of things to try if/when DS flares. Like you, I was very reluctant to consider it - my major concern being malabsorption of nutrients.

 

DS is unusually sensitive to changes in his supplements and seems to really need exactly what we've settled on in terms of daily vitamins/minerals. So cholestryamine could really mess this up. But although he's been off abx for lyme for 18 months and has been symptom-free for long periods of time, he does develop an eye tic and some ocd when a certain threshold is crossed. He too has the mold HLA gene issue but seems to be able to tolerate a certain level of environmental insults - be it dog dander, pollen, mold spores, dust mites - but then something will change - spring pollen, the dog got a skin infection, a rainy period will spike the mold spore count in the woods - and the tic and other symptoms come back. Long story short, our LLMD has helped us come to the conclusion that because there's no single thing that's acting as the trigger - that because it's more like a threshold, we need to treat DS's mold sensitivity the way you treat seasonal allergies - with supps that manage symptoms until the collective levels drop. (note - we've tested and are pretty sure there's no mold remediation needed).

 

So our plan is that when symptoms crop up, I do all I can to lower the levels of triggers that I can do something about - the dog gets a short haircut, we get extra vigilant in cleaning, I poke around for mold, etc. And if after a time, the symptoms don't subside, we'll try using cholestyramine in a burst - the way you'd use prednisone for a steroid burst. Maybe a week of a low dose, to help the body detox. We won't be doing any expensive testing - even C4a and other Shoemaker tests have given us mixed results. Instead, we'll use symptom response as our guide. I'm not crazy about using cholestyramine but am ok trying it as a burst. Maybe you can try a similar approach and do a trial or bursts rather than a longer term plan.

[searching_for_help]

Thank you both. I very much appreciate the info. I guess we're going to start it Monday. Honestly, things can't get any worse than they are. (But I've said that before and been wrong...)

 

Does anyone know if this can cause a herx? I'm assuming it can, and not sure we can take ANY worsening of conditions.

[sf_mom]

You can do the Shoemaker panel and that would hopefully be covered by insurance. Like LLM we also had mixed results with Shoemaker panel and it wasn't hugely definitive for us either but helpful.

 

Real Time Labs was surprisingly covered by our insurance. You can mark an area on their order form and for an extra $30 they will file with your insurance. Each follow-up test is $100 if you check appropriate box on their order form.

 

I also recently learned that like heavy metals you may have a mold toxin issue but are not excreting the toxin's at time of test. So, a negative result doesn't mean you don't have a mold issue. The collective test results are important. Our kids were already on Cholestyramine when we tested them and they were dumping a ton of mold toxin's in their urine. Cholestyramine can cause a herx but in time they do improve. For DD, well beyond her previous baseline but it took two months. Prior to dealing with mold it felt like she just couldn't get past a certain level of recovery and if just one antibiotic was taken away she would regress within 10 days. You also have to make sure they are getting tons of glutatione. We nebulize glutatione but there are pills, liquids and creams. Whey protein (cold pressed - grass fed 'Tera's Whey') will help raise glutatione levels as well.

 

The HLA marker your DD has is also not specific to mold. It also relates to biotoxin's. Lyme is just one type of bacteria that create biotoxin's. It could be just a biotoxin issue from bacteria and not mold at all. Cholestyramine will treat both biotoxin's and mold.

Edited July 26, 2014 by sf_mom

[searching_for_help]

I called the lab about the HLA testing. According to doc at the lab, our dd's results were specific for mold and marcons, but she didn't have the one for trouble detoxing Lyme.

 

I didn't know about the glutathione - thanks for mentioning that. I'm kind of getting caught between the advice of two different doctors. One wants to treat for mercury - he just suspects it from her genetic snps - we have no proof she is high in mercury. The other doc was nice enough to order the cholestyramine due to her mold HLA snps. She had put dd on high doses of NAC, but the other doc said NOT to take NAC due to snps (possibly CBS? I can't remember....)

 

But honestly, at this point, I'm not sure I can even keep her out of a psych ward to do any of this. Her anxiety, OCD, restrictive eating, etc. is so extreme, and she's gone from sad, wanting to die, to mean and argumentative. I think I might break before she does.

Edited July 26, 2014 by searching_for_help

[NancyD]

Thought you might be interested in this radio interview with Dr. Neil Nathan, who talks about treating mold toxicity in individuals with Lyme disease and co-infections. He uses cholestyramine for one type of mold (I believe he said ochratoxin A group but I can't be sure) and activated charcoal and chlorella for Trichothecene group. He said treatment is individualized and if you are not treated by someone who knows what they are doing you could end up in much worse shape. It's worth listening to.

 

http://www.gordonmedical.com/unravelling-complex-chronic-illness/radio-interview-with-neil-nathan-md-mold-lyme-and-coinfections/

[mama2alex]

The first thing you need to do is figure out whether your home and/or her school (if she's attending) have mold. There's no point pulling out mold toxins when she's just taking them right back in from her environment. The best test is the ERMI from Mycometrics. Our doctor warned us that treating while still in a moldy environment could cause a very bad herx (and he refused to order the cholestyramine until we'd moved out or remediated). In the end, both my son and I herxed pretty badly anyway - his was anxiety and mine was pain/fatigue/brain fog. If you determine that your environment is moldy on top of her having the genetic predisposition, then I would treat. BUT as NancyD mentioned, you need a doctor who knows what they're doing, e.g. how to monitor whether the levels are coming down and when to move on to the other treatments for mold. Please proceed with caution. I'm not saying don't explore the mold issue, just be careful. Mold is nothing to mess with, as we've learned the hard way.

[SSS]

I will say watch out for constipation, as it is a binder.

FWIW, dd9 and I did not herx at all with Cholestyramine.