Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Heidi..where do you get these products?leanne To: BorreliaMultipleInfectionsAndAutism From: fight4thekids@...Date: Sun, 6 Mar 2011 01:21:24 +0000Subject: Re: Porphyria Just want to say that I have seen several posts on CSM. They either said they felt it helped significantly or stated they could not tolerate it. So, it appears some can tolerate it and some can not. There is talk that cholestepure is often used by those who can not tolerate CSM. I have used neither, mostly because I felt uncomfortable about the way they work, via reducing fats. I use Modifilan to mop up my loosened toxins. I use Mitochondrial Restore for detoxing. Love and prayers,Heidi N>> Hi All,> > been away for a while.. father had a massaive stroke and I crashed, which leads to my question.> > I crashed from stress and most likely ramping up too quickly on csm. I stopped abruptly when caught a cold and then ended up sofa bound for 2 months. Every time I tried to get up, my pulse would go very high.. typical POTS. I had other symptoms as well, but this is the one that kept me unable to function.> > At some point, I developed reddish orange urine. I remembered my sister was diagnosed with Variegate Porphyria years ago at the Mayo Clinic in ville, FL. She had "off the charts" porphyrins in her stool. > > She was subsequently tested by one of the few porphyria experts in the US. She left her appt beleiving she did not have VP or any kind of porphyria after blood and urine samples. Urine is vey unstable and often is only positive during an attack.> > We have looked back over her symptoms when she was her sickest and see they match the most obvious porphyria symptoms down to her paralyzed arm and leg. > > I have looked further into this and see there are genetic and acquired-toxin induced prophyrias.> > I looked on Dr. Amy's board and see she thinks this is pretty common with autistic kids. Of course she sees the toxin induced (mostly lead and mercury I think) forms.> > I am wondering if any of you have looked into this and addressed.> > I am currently halting our low carb, candida diet here since this can exacerbate porphyria. Charchoal and csm can be used to bind the neurotoxic porphyrins but charcoal is contraindicated in the VP and posibly all acute forms due to some rebound effect (that seemingly i might have experienced) though I am not sure what is meant by rebound effect.. exactly what is going on: toxins released too fast for the liver to process, toxins triggering heme priduction, toxins blocking heme synthesis in liver before they reach the bile.> > Would love to hear your experiences and perspectives.> > Robin> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 I get Modifilan from: http://www.poseidonsharvest.com/modifilan/buy-online.php I get Mitochondrial Restore from: http://www.neurobiologix.com/mitochondrial_dysfunction_s/5.htm We also use MB12 cream and other things. I am not sure if the Mitochondrial Restore will work well without the MB12 cream. They work together to make the detoxing cycle work. It's found here: http://www.neurobiologix.com/Neurological_Immune_Support_B12_Topical_Creams_p/46\ ..htm We got 6 weeks of die-off from the MB12 cream, 2 days of die-off from the Mitochondrial Restore and 1 day of die-off from the Modifilan. No more die-off after that point, just decreases in symptoms. Love and prayers, Heidi N > > > > Hi All, > > > > been away for a while.. father had a massaive stroke and I crashed, which leads to my question. > > > > I crashed from stress and most likely ramping up too quickly on csm. I stopped abruptly when caught a cold and then ended up sofa bound for 2 months. Every time I tried to get up, my pulse would go very high.. typical POTS. I had other symptoms as well, but this is the one that kept me unable to function. > > > > At some point, I developed reddish orange urine. I remembered my sister was diagnosed with Variegate Porphyria years ago at the Mayo Clinic in ville, FL. She had " off the charts " porphyrins in her stool. > > > > She was subsequently tested by one of the few porphyria experts in the US. She left her appt beleiving she did not have VP or any kind of porphyria after blood and urine samples. Urine is vey unstable and often is only positive during an attack. > > > > We have looked back over her symptoms when she was her sickest and see they match the most obvious porphyria symptoms down to her paralyzed arm and leg. > > > > I have looked further into this and see there are genetic and acquired-toxin induced prophyrias. > > > > I looked on Dr. Amy's board and see she thinks this is pretty common with autistic kids. Of course she sees the toxin induced (mostly lead and mercury I think) forms. > > > > I am wondering if any of you have looked into this and addressed. > > > > I am currently halting our low carb, candida diet here since this can exacerbate porphyria. Charchoal and csm can be used to bind the neurotoxic porphyrins but charcoal is contraindicated in the VP and posibly all acute forms due to some rebound effect (that seemingly i might have experienced) though I am not sure what is meant by rebound effect.. exactly what is going on: toxins released too fast for the liver to process, toxins triggering heme priduction, toxins blocking heme synthesis in liver before they reach the bile. > > > > Would love to hear your experiences and perspectives. > > > > Robin > > > Quote Link to comment Share on other sites More sharing options...
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