symptoms after starting mold/biotoxin binder

[searching_for_help]

OK, dd's doc suggested Cholestyramine in pure form, but due to the difficulties of getting that (has to be compounded and can be very expensive), we settled on a product called BIND by Systemic Formulas. She is supposed to take 2 pills at night.

 

Soooo, she took 2 pills Saturday night and again Sunday night, and today she spent all day throwing up. Her whole body aches and she is miserable. For those who know our case, she has an eating disorder, so the LAST thing we need is a day throwing up. It also ramps the "eating disordered thoughts", which makes it hard to get her to eat again.

 

My question is, for those who have done the binding agents for mold/biotoxins - is it normal to have flu-like symptoms like a herx a day or 2 after starting, or does she actually have the flu? I'm not sure what to think, but I'm NOT giving her another dose until things calm down.

[mama2alex]

I can't tell you what's going on in your case, but I can share our experience with Cholestyramine (which btw we just get from Walgreen's). Once we got out of our moldy house, we both had to take it 4 times a day for a month. It caused our most problematic symptoms to skyrocket - for me it was almost unbearable pain, and for ds it was terrible anxiety and moodiness. We did it at different times, thankfully - I went first, then we did his in the summer after school let out. Once we went down to once a day, symptoms subsided.

 

You might try stopping, seeing if symptoms subside, and then trying the BIND one more time. Or after a break, when symptoms have subsided, try a different product. Our doc says only the Quercitin (sp?) or Cholestyramine (generic) pull out mold toxins effectively.

 

Also, have you fully addressed the mold exposure? If she's still exposed, there's no point in doing the binder yet.

[searching_for_help]

Thanks so much for sharing your experience. Our doc wanted the pure form of cholestyramine, without all the food dyes and additives. She said that had to be compounded, but something about they have to order in such a large amount that it makes the price terrible.

 

My husband is in the basement cleaning as I type. As soon as I came home my nose and head started hurting - I need to be the one going through junk down there, but I have 2 of the HLA genes for mold myself, but dd has the "dreaded" multisusceptible one, and rotten methylation snps. I'm not positive it is mold affecting her - her urine mold test was negative, but her other tests indicate some kind of biotoxin issue.

 

Everything down there has whitish spots...mildew or mold? I have know idea how to deal with this.

 

Just curious, did the symptoms start after a couple of days of starting it? She is VERY moody, on top of the throwing up. Her eating disordered thinking is definitely back, and I wish I had someone to take over while I run off for a while... Twelve years of this is enough for all of us...

[mama2alex]

Our detox symptoms started within a day or less of starting the high-dose Cholestyramine.

 

Trying to "clean up" mold while living in a space can be disastrous, so please be careful. He may think he's cleaning, but most likely he's just launching the spores/toxins into the air and all over the house! I would pause on the cleaning and do an ERMI test on your home to see what you're dealing with - toxic molds or "harmless" mildew. I can help you interpret the results once you have them. I have a "key" from our doctor that provides a sort of rating system for how bad things are. It will also tell you what types of mold are highest in your home.

 

Also, if you see something that looks like mold in your home, I'd hold off on any kind of binder until you've figured out whether it's toxic mold and have either completely remediated or moved out. Our doctor absolutely refused to start the Cholestyramine until we were out of the moldy environment. He said it could cause a terrible detox reaction and really wouldn't do any good because it would be coming in at the same time we were pulling it out.

[nicklemama]

Haven't used cholestyramine. DS's doc uses Welchol on kids. I did not notice terrible ramping symptoms and we saw slow and steady improvement over a few weeks time. You might consider lowering the dosage and slowly building up. DS has an HLA gene for mold too, but not the dreaded one.

 

We installed a high efficiency dehumidifier in our basement. Put a sealed cap on the sump pump. Installed a return air vent in the basement. Placed a high quality air purifier in DS's room. Mold testing showed mold within normal limits in our house but we went ahead and did the things that we could without a professional. The return air vent was installed when we got a new a/c.

 

Once we got the basement drier and started the Welchol, activated charcoal and Medi Clay, the last remaining symptoms went away. And his C4a dropped back into normal range.