posted
I started taking Welchol one month ago because I have the HLA genotype that causes my body not to remove Lyme toxins. Anyhow, the nurse warned me that people usually feel worse the first month, but I JUST started feeling awful this past week. I am so dizzy and confused that I crawl around on my hands and knees (less dizzy for some reason), have difficulty looking at anything in the daylight, shake uncontrollably, and just sit and cry and expect to keel over dead at any minute. It's AWFUL! Did anyone else who has taken Welchol have a bad reaction? I don't know if it's the Welchol or something else. The only other new medicine is cryptolepis (for babs), which I stopped a week ago.
Posts: 8 | From Ohio | Registered: Apr 2011
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quote:Originally posted by aperture: It must be similar to Cholestyramine...that stuff was horrible for me... set my body into a cytokine storm.
-Oh yes, same basic stuff. STinks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Have you checked your blood glucose levels? I ask this because Welchol and cholestyramine can lower blood glucose levels.
When I was taking Cholestyramine it made me feel awful. I was told that it was just a "cytokine storm" but I have come to believe that the reason that it made me feel so awful was because it was lowering my cellular levels of sugar/glucose and possible my cellular sodium levels. I wish that I would have had my refractometer and conductivity meter back then!! That way I would have been able to see if my theory was correct or not.
Welchol and cholestyramine can also lower blood levels of certain hormones and nutrients in the body.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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posted
I started to feel bad on it after a few months. Extremely depressed. I thought that it might be due to it lowering my cholesterol too much. I stopped taking it for a while, but have just started back up, albeit at a lower dose(2 per day).
But what's the alternative? I have the same HLA genotype. Do coffee enemas have the same detox effect?
Posts: 226 | From Princeton | Registered: Oct 2010
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Cytokine storms are serious...they can kill you. Don't know why any Dr would say "just" a cytokine storm.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Aperture,
I added in the "just" part myself because my doctor actually prescribed me Actos while I was taking cholestyramine because they seemed to think that my bad reaction to cholestyramine was due to a cytokine release. But I had to stop taking Cholestyramine altogether because I continued to feel horrible while taking it.
Also, I was just trying too point out that 8gatortots reaction may not have been due to a cytokine storm but instead it may have been due to one of Welchol's known side effects. Welchol and Cholestyramine have known possible side effects. And the lowering of glucose levels is one of those known side effects.
And as I said earlier, I was told that my bad reaction to taking cholestyramine was due to cytokines but it doesn't appear that cytokines were the main reason for my bad reaction to cholestyramine because I get the exact same type of reaction when my urinary brix (sugar) is low. I measure the brix of my urine with a refractometer. And if my urinary brix is low then I will have essentially the same symptoms as a my reaction to cholestyramine. Is this a coincidence... maybe. But I don't think so. I only wish that I would have had my refractometer and conductivity meter back then when I was taking cholestyramine. Nonetheless, I have become to believe that my bad reaction to cholestyramine was more likely due to cholestyramine's glucose lowering properties.
By the way, Cholestyramine can also lower several nutrients and even lower some hormones in the body.
And for those that might be interested, one of my diagnoses was mold toxicity. I have the HLA genotypes 4-3-53 and 15-6-51. And more specifically, I have the �dreaded of the dreaded�subtype because my DRB1 is 0401. So, according to Dr. S I am supposed to be very sensitive to mold and lyme biotoxins. So, I moved out of my house and into a mold free environment and I was treated for mold toxicity using Dr. S's protocol and I didn't improve at all. So, I just quit doing the mold protocol and moved back into my old house.
But now that I am preventing my previous daily urinary brix (sugar) and urinary salt crashes and now that I have corrected my body temperature to normal I don't seem to have any type of bad reaction at all to living in my old house or to walking into to moldy type of environments such as basements and cellars.
posted
I just wanted to make sure that no one thought cytokine storms were minor.
We never really know what's truly going on..that's what is so maddening about this disease!...is it a herx/antibiotic side effects/cytokine issues/hormone issues...the list is endless
emla999/lyme: did you have anti-diuretic hormone issues with the mold issues?
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Aperture said:
quote: emla999/lyme: did you have anti-diuretic hormone issues with the mold issues?
I am not sure because as far as I know, my anti-diuretic (ADH) hormone was not measuered at that time. This was several years ago and I didn't know much about cholestyramine's effects on the body's hormones back then.
But I suspect that my ADH/vasopressin levels were low back then because I was drinking alot of water and fluids at that time. Drinking alot of water/fluids can cause the ADH levels to plummet and it can also cause the urinary sugar and urinary salt to crash and thus I had to pee frequently and had cold hands and feet along with the extreme fatigue, headaches, tremors and etc. And for whatever reason taking cholestyramine just intensified my symproms.
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