Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 Hi Steve, Thanks so much for taking the time to share all that! I don't understand all of it :-), but I'm going to save it and keep an eye out for any related info. I did a dogpile search of " porphyrins " and one thing I read made me wonder if your abnormal porphyrins are related to your blood counts being off ( " Porphyrins are complex molecules in the body that combine with iron to produce heme, which is responsible for giving blood its red color and combines with globin to form hemoglobin. Besides delivering oxygen through the body’s circulatory system, heme is important in metabolism and human physiology. " ). You probably already know this. On the MCS/detox pathway issues, I have many sensitivities (perfumes, soaps, candles, etc., etc., etc. - most things scented, but mainly synthetic scents). I seem to be able to handle the Cat's Claw okay, so maybe I don't have detox pathway issues (I did have an immediate horrible reaction to a new thyroid med once, but I think that was because my body wasn't able to convert it). Something to ask my llmd about next time, though. And something to keep in mind if trying any new abx, etc. I imagine if one does have blocked detox pathways, they would also have an *immediate* reaction upon starting any abx they can't handle, much as you did with the Cat's Claw. That certainly was a small amount you reacted to! I see why you don't think it was a herx. My last bloodwork/CD57 wasn't too impressive, and your post had gotten me wondering about Cat's Claw (whether it was helping me or not), among other things! I'm sorry you've had to go through all this. Thanks again for sharing. Keep the faith. Ann In a message dated 12/15/06 12:04:18 PM, xanax006@... writes: > Hi Ann, > I've had pretty severe MCS since 1999 or so. can't take meds or ingest > anything chemical > or synthetic or i get severe, immediate neurological symptoms. this is > partly due to toxicity > from being an oil painter for 10 yrs as well as lyme, chem exposures, > viral load, etc. > > i've had my porphyrins measured and they're all abnormal. most people > with MCS have > blocked detox pathways. anyway, an ILADS doc lectured at the Lyme > Conference in 05, > i believe and said that some medications are broken down by the P-450 > system > of liver detoxification - he mentioned certain antibiotics, cat's claw, > quinolones. > he said these meds/substances can actually make you sicker. > > i think he was saying that some people have an upregulated Phase I > detox and some people > have an upregulated Phase II detox - i don't remember the specifics - > but that would determine > whether or not you can handle certain substances. sorry i can't be more > specific. > > If you do have detox pathway blocks, would your adverse reaction to > the Cat's Claw mean > > that it may have been immediately working for you but your body just > > couldn't clear the > > toxins? Or maybe that it might just take longer to clear the toxins? > > i think i was actually having trouble metabolizing the herb. i don't > think i'd have a die > off that quickly (from just 1/16th of a capsule). > > > > Since Smilax is supposed to bind with endotoxins, then would blocked > > detox pathways > > mean Smilax could still bind with the toxins but just have no route > > to take them out? > > i don't know, but it seems like if something binds with endotoxins, the > gut will carry it out, > not the liver so it shouldn't be a big detox issue. just my guess. > > > > Would blocked detox pathways in anyone mean they would have a pretty > > quick adverse > > reaction to Cat's Claw, or could it also explain why some people > > don't react badly to it but > > also don't see improvement from taking it? > > if your detox pathways are blocked, you will definitely have a > reaction. the same reaction you'd > get if you had mercury circulating in your body that had been > dislodged. it's basically a re-poisoning. > that's why it's important to chelate really slowly. in the case of > cat's claw - assuming this ILADS doc > is correct - it would be like ingesting something too toxic for your > body. > > Steve > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 Ann thanks for doing that search on porphyrins. I'm being worked up by a hematologist right now and the next blood test will investigate my porphyrin counts again. i was told by an MCS researcher that i have " acquired porphyria " . basically it doesn't fit any known genetic type of porphyria but is increasingly common in people with toxic injury. but then again, he's a researcher and was trying to substantiate his theory for his own gain - so it's not an undisputed fact. Besides delivering oxygen through the body’s circulatory > system, heme is important in metabolism and human physiology. " ). You > probably > already know this. i wasn't aware of that specifically but i knew people with acute porphyria attacks are given heme transfusions. porphyria, like lyme can cause any symptom under the sun. > > On the MCS/detox pathway issues, I have many sensitivities (perfumes, > soaps, > candles, etc., etc., etc. - most things scented, but mainly synthetic > scents). same here. > I seem to be able to handle the Cat's Claw okay, so maybe I don't > have detox > pathway issues (I did have an immediate horrible reaction to a new > thyroid med > once, but I think that was because my body wasn't able to convert it). > Something to ask my llmd about next time, though. then again it could be something simple like an intolerance to some of the inert ingredients. it's so hard to know. i'll try nutramedix cat's claw (samento) and see if i get the same reaction. if not, then i was reacting to something synthetic in the herbal preparation. just because we have a bad reaction, doesn't mean it's a die-off. some people just can't tolerate certain herbs. > > And something to keep in mind if trying any new abx, etc. I imagine > if one > does have blocked detox pathways, they would also have an *immediate* > reaction > upon starting any abx they can't handle, much as you did with the > Cat's Claw. that definitely happens to me. and it's so frustrating when you CAN tolerate an abx and then the manufacturer decides to use different fillers because they can get the ingredients cheaper thru another supplier - suddenly the abx that you normally tolerated is now toxic to you. this happened with Ceftin - which did wonders for me before they changed the ingreds. it can't be compounded because the patent is still new. > That certainly was a small amount you reacted to! I see why you don't > think it > was a herx. > > My last bloodwork/CD57 wasn't too impressive, and your post had > gotten me > wondering about Cat's Claw (whether it was helping me or not), among > other > things! > > I'm sorry you've had to go through all this. Thanks again for sharing. > > Keep the faith. Thanks. you too. Steve > Ann > > In a message dated 12/15/06 12:04:18 PM, xanax006@... > writes: > > > Hi Ann, > > I've had pretty severe MCS since 1999 or so. can't take meds or > ingest > > anything chemical > > or synthetic or i get severe, immediate neurological symptoms. this > is > > partly due to toxicity > > from being an oil painter for 10 yrs as well as lyme, chem > exposures, > > viral load, etc. > > > > i've had my porphyrins measured and they're all abnormal. most > people > > with MCS have > > blocked detox pathways. anyway, an ILADS doc lectured at the Lyme > > Conference in 05, > > i believe and said that some medications are broken down by the > P-450 > > system > > of liver detoxification - he mentioned certain antibiotics, cat's > claw, > > quinolones. > > he said these meds/substances can actually make you sicker. > > > > i think he was saying that some people have an upregulated Phase I > > detox and some people > > have an upregulated Phase II detox - i don't remember the specifics > - > > but that would determine > > whether or not you can handle certain substances. sorry i can't be > more > > specific. > > > > If you do have detox pathway blocks, would your adverse reaction to > > the Cat's Claw mean > > > that it may have been immediately working for you but your body > just > > > couldn't clear the > > > toxins? Or maybe that it might just take longer to clear the > toxins? > > > > i think i was actually having trouble metabolizing the herb. i don't > > think i'd have a die > > off that quickly (from just 1/16th of a capsule). > > > > > > Since Smilax is supposed to bind with endotoxins, then would > blocked > > > detox pathways > > > mean Smilax could still bind with the toxins but just have no > route > > > > to take them out? > > > > i don't know, but it seems like if something binds with endotoxins, > the > > gut will carry it out, > > not the liver so it shouldn't be a big detox issue. just my guess. > > > > > > Would blocked detox pathways in anyone mean they would have a > pretty > > > quick adverse > > > reaction to Cat's Claw, or could it also explain why some people > > > don't react badly to it but > > > also don't see improvement from taking it? > > > > if your detox pathways are blocked, you will definitely have a > > reaction. the same reaction you'd > > get if you had mercury circulating in your body that had been > > dislodged. it's basically a re-poisoning. > > that's why it's important to chelate really slowly. in the case of > > cat's claw - assuming this ILADS doc > > is correct - it would be like ingesting something too toxic for your > > body. > > > > Steve > > > > Quote Link to comment Share on other sites More sharing options...
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