okay to take cholestyramine/Questran with food?

Based on posts in Daisy's "9 Kinds of Hell" blog, it appears that Questran/Cholestyramine can be taken with food.

Did I understand that right? I though it was supposed to be taken 2 or more hours away from food like the activated charcoal. Doesn't it also absorb the food instead of the porphyrins? There was a bile component I didn't fully understand. Perhaps that's the difference between the Cholestyramine and the charcoal?

Has anyone here herxed on Cholestyramine before? I seem to be having real trouble getting on it.

(Sorry if this is elsewhere on the site. I searched but didn't see an answer already discussed.)

Marysia - Questran is designed to take with food - preferrably food with a little fat in it to trigger a good bile dump - this is how Questran sucks out the toxins/porphyrins. 

Probably the confusing thing is many people here take antibioticsi/other meds/supplementsi around meal times.  With Questran you need to get all your meds and supplementsi down at least an hour before you take the Questran OR 4 to 6 hours after you take the Questran. 

Some here take it at bedtime with a little bit of oily type food so it works while you sleep.  Believe Louise uses some potatoe chips and I am using a couple of slices of whole wheat bread drizzled in olive oil for my husband.  Hope this helps! 

Daisy - Husband on CAPi 5/07.  Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Hi Daisy,

Thanks for the info on Questran.  It's used in the Lyme community for clearing toxins, too, but always directed to be taken away from food by 2 hours.  I bet that has to do with the assumption that all Lyme patients are taking their meds with their food.  Thanks for clearing that up!

I'm so sorry you are dealing with such tremendously difficult times with your husband's illness.  Your posts are amazingly grounded despite all you go through and you are so helpful to the cpnii community even though I can only imagine how thin your energies must be stretched.  Your perspective and humor give me strength in dealing with my own illness.  Thanks for that.

I'm not sure if this will be helpful or not considering your situation is only temporary, but having dealt with incontinence issues in my family, I wanted to let you know about an enzyme cleaner called Anti-Icky Poo (strange name, I know) that is used to clean up after cadavers have been found in a bad state.  It's industrial strength and works well for urine, feces, sweat, etc. and gets odors out better than anything we've tried.  It's pricey, and we've only found it online, but well worth the cost for our sanity.  We buy it by the 4 gallon case now and I keep extra spray bottles from the dollar store full of it (you can dilute it with water by 1:3) everywhere in the house and car. 

For more info, here's their website (though it's cheaper to buy on Amazon):

http://www.antiickypoo.com/c-antiickypoo.html 

There's also a weaker enzyme cleaner called Nature's Miracle that might be easier to find locally in small $10 bottles in stores like PetSmart or the grocery for shorter-term issues.

My best hopes for you and your husband,

Marysia

(P.S. I tried to email you directly but wasn't able to.) 

 

CDC Lyme Western Blot positive 02/06, two years slow up and down improvement on variations of CAPiii. Currently halted in treatment after an apparent severe porphyriai attack with lasting damage seven months ago.

Marysia

 

CDC Lyme Western Blot positive 02/06, two years slow up and down improvement on variations of CAP. Currently halted in treatment after an apparent severe porphyria attack with lasting damage seven months ago. Trying to </

I pulled this thread up because I seem to be having a hard time getting on questran too. It really kicks up the depression and anxiety just like flagyli used to. I found this article and was wondering if questran since it is a lipid lowering drug could be antichlamydial?? If chlamydia hides inside lipid cells like duke university found, it would seem that if you lower the lipid cells wouldn't it stir the the rest of the tribe up having a die off effect? http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1195438 zero negative sjogren's diagnosed 2/03, 200mg doryx daily, mwf zithromax, flagyl every 3 weeks.

200mg doxyi daily, 500 zithromax mwf,flagyli 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

 Lee- you could be right, Although I've never heard anyone here report feeling worse from cholestyramine, theoretically if your cholesteroli levels are already low and you drive them even lower with the cholestyramine it could cause some Cpni kill. The tocotreinols work on the same basis-- depriving Cpn of the cholesterol it needs to invade and maintain itself in the host cell. I'll be interested to hear if anyone else gets this. Because cholestyramine does not act in the bloodstream at all, it would have to have effect either by Cpn you have in the intestinal lining, or if you had low cholesterol to start with.

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Lee & Jim,

Low cholesteroli here for sure ("lovely cholesterol numbers", my GYN said).  How about you, Lee?  I wonder about Blackfoot, too, whose "Porphyriai Help" posting I just replied to since he's having issues and one of the things he's on is Cholestyramine.

I found dozens of postings on Lymenet about terrible Cholestyramine herxes. Maybe I'll post a question there asking if those who had difficulty with it also have low cholesterol numbers.  I also plan to research why Actos helps so many with Cholestyramine herxes and also why Alka Seltzer Gold is helping me so much. 

This may need a new thread if there are enough people interested!

Cheers, 

Marysia

 

CDC Lyme Western Blot positive 02/06; Cpni, HHV6, and EBVi positive 03/08.  Two years slow up and down improvement on variations of CAPi for Lyme.  Currently slowly resuming treatment and changing to newly discovered (for me) Cpn protocol after a severe porphyria attack with lasting nervous system damage on Diflucan in 09/08 brought me, after months of searching for answers, to this site and the understanding that Cpn is the likely culprit behind my overall illness starting in childhood.

This is probably wild speculation on my part and a completely unscientific thought that came to me after my recent experience with an ACE inhibitor which increases venous capacitance. If you don't have a cholesteroli problem this might well be an easy drug to take, but if like me your veins are coated with Cholesterol loving Cpni, (I think I'm right in saying that cholesterol plaques are in part at least the result of Cpn infection) then any interference with Cholesterol (in the case of the ACE inhibitor it may relax the cholesterol encrusted vein to a painful level) is likely to bring on some significant symptoms.

My experience with Enalapril was like setting the inside of my legs afire, I had a cough that came out of nowhere, I had sudden attacks of giddiness, tachicardia, I itched all over, but especially badly around the ankles, my IBSi flared up and did not relent until I stopped taking it three days later.

The reason I make this suggestion, is that taking tocotrienols which have a similar but less acute action on cholesterol than Cholestyramine has given milder but similar symptom to taking Enalapril. So something is happening in my circulatory system whenever I try to disturb the status quo.

Maybe there isMichèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

" Although I've never heard anyone here report feeling worse from cholestyramine, theoretically if your cholesterolii levels are already low and you drive them even lower with the cholestyramine it could cause some Cpnii kill."

I am one of those who felt worse on Questran at first .... depression, fatigue, serious brain fog. I don't remember how long into it I was ... 2-3 weeks? .... but one day all of a sudden within the course of an hour the dark fog lifted. That was about a week ago and my head has stayed pretty clear and my mood pretty good since then. I have no idea what triggered it but the suddenness of the change was pretty dramatic. There have been a couple times I thought the fog was creeping back and just skipped a dose and was good. But I don't know if it was really coming back or if lack of sleep that day, stress, etc. So many variables in life it's hard to sort this all out!

As for lowering cholesterol causing die-off, I'd wonder if what you're feeling is actually a worsening of the infection because, from what I read, lowering your cholesterol actually increases your risk of infection. But maybe cpn is different if it loves cholesterol. But maybe there is no correlation though because, if there were, then we'd see that people with low cholesterol would not be infected with cpn ... or the other way around if the other theory is true. I don't know. I'm just throwing stuff out there. :)

But, when I read that low cholesterol increases risk of infection I started eating more fat as a precaution because I already have good cholesterol levels and didn't want to lower them. Perhaps the added fat is what helped lift the fog?

Maybe the "die-off" some of us feel is just the body's response to drastic change. Even though toxins are bad for us perhaps the body sort of gets used to it and when you have a massive toxin dump you are changing things so rapidly you're just throwing everything out of whack.

 

Sunni, I don't think the increase in toxin release is too complicated.

 Tongue outToo much die-off, too quickly, can make a body ill, or can overwhelm its sytems and kill it.

That's why going slow is better than mega-kill of cpni.  No point in killing the host of the disease (us) when all we want to do is kill the disease. Wink

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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