Guest guest Posted December 27, 2003 Report Share Posted December 27, 2003 Yes, everyone's different. But I have heard way more good reports than bad from it. As for you saying many lyme doctors don't use it, my own LLMD in VA hadn't used it I don't think and she was way smart too. Another friend of mine with lyme went to one of the most prominent LLMD's in southern CA and he would give him prescription for csm but frowned upon it, despite it helping him greatly! Makes me wonder where the LLMD's priorities are, pumping them full of multiple abx or tring to exaust removing neurotoxins. So I think it is far undertried than overtried. Btw, don't forget beta sitosterol! > I am still only back to hitting a few of the posts, but I did feel a > need to respond to a comment made that cholestramine helped > most Lyme patients. Ive tried it, and many others of my Lyme doc's > patients have tried it, and none of us had any success with it, never > mind how difficult it is to take. And, just to clarify, this is in NO > WAY a criticism of 's comment. Just wanted to point out that we > all have not had good experiences with it. And as a Lymie, the BEST > results I ever had were taking an antiviral...Famvir, unfortunately > it did not continue to work for me, and I even stopped for like a > year and retryed, and still no luck. I don't know if it's because I > test positive for EBV (interestingly, I got Mononucleosis 6 months > after I was first infected with Lyme- and didn't know about the > Lyme). But I surely " look " viral, even though I believe my main > problem is Lyme. So my New Year's resolution is that I am going to > quit messing around, and start doing everything I can to get my > immune system to the point where it has a chance to fight off this > disease. > tansy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 I wanted to share my experience. Not to influence your decisions, as I have a sensitive system. I convinced my mainstream doc. to prescribe CSM & Nystatin. Within minutes of CSM cleared head fog lifted. The 1st time I was okay, the 2nd had stomach upset & couldn't eat. Not vomiting but felt awful. I might try compounded. It's an amazing med for those who tolerate it. Compounded Nystatin is helping. As an alternative to CSM I take pygnogenol. They work the same way but CSM is much stronger. I had improvements w virastop for viruses/biofilm Candidase w it for mold/yeast. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 You people are going thru some tough times....does your husband protect himself? My husband is sorting thru our storage, he puts on disposable hazmet suit, goggles, mask, & gloves. After using it for the 1st time he did not have a cough. How is your husband doing being exposed? I am staying away b/c last week after being around our moldy RV I had migraines/headaches for 4 days.  Your son how is he now?  I will keep him in prayer and you two. Sue, is the sauna helping you? I sure hope so? Your younger son fared OK in the mold? Genes, eh?  I am praying for all of you, Diane From: sue <svican@...> Subject: Re: Spam[5] Re: [] CSM Date: Tuesday, November 16, 2010, 3:45 PM i've been out of that house for 1 year, my sick son out too that long, hubby & younger son out say 6 months. none of us taking csm, sick son did for several months under dr gray, didn't make any difference and since he has bowel motility problems it's just another stresor to his gut, i tried a couple doses, don't care for it, am sauna-ing instead.... hubby doing neither yet, too caught up in clearing out the old house, getting it rehab'd, and rented out, dying under the triple burden of mortgage, rent and medical bills, yippee.... sue v. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Diane, my sick son, i think his illness is multifactorial, not just caused by mold... everyone else ok, we are not protecting ourselves with protective anything when back in the house or around our stuff, and we are ok, just exhausted....washing everything that comes into our new space, soaking wool blankets three days out on the deck, etc. leaving almost all papers in storage, getting rid of a lot of books, etc. and i only bring one in the house at a time to read, doesn't bother me.. sauna is great although i was doing it at 140 degrees which is what dr rea says--140 for 20-30 minutes but find it depleting and giving me a headache so last nite i went back to 120 degrees which is what i used to sauna at, more comfortable for me adn i am sure at any temp it has a positive effect. mostly we are just worn out from this ongoing horror of sick adult child, a 21 going on 2 yo to care for for how long??? till we die of exhaustion??? i don't know, and then what for him if he even outlives us???? add the move to that which isn't even a regular move with all the cleanign and disposing of stuff...then the financial burden of ridiculous medical bills and 2 residences, a wonder we don't all go out and shoot ourselves, eh?? I think genes have little to do with it, sick son and i both have dreaded genotype (multisusceptible + low msh genes), younger healthy son has multisusceptible times 2, hubby multisusceptible....go figure... sue v >You people are going thru some tough times....does your husband protect >himself? My husband is sorting thru our storage, he puts on disposable >hazmet suit, goggles, mask, & gloves. After using it for the 1st time >he did not have a cough. How is your husband doing being exposed? I am >staying away b/c last week after being around our moldy RV I had >migraines/headaches for 4 days. > >Your son how is he now? I will keep him in prayer and you two. Sue, >is the sauna helping you? I sure hope so? Your younger son fared OK in >the mold? Genes, eh? > >I am praying for all of you, >Diane > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 we are the same, sue.. multi and msh, multi and ? and i hope my son is not a double multi. there have to be other factors though since my husband is not sick but i am worried with him in that house so much. btw.. the csm compounded is tasting more and more like plastic. robin > > Diane, > > my sick son, i think his illness is multifactorial, not just caused by mold... > > everyone else ok, we are not protecting ourselves with protective > anything when back in the house or around our stuff, and we are ok, just > exhausted....washing everything that comes into our new space, soaking > wool blankets three days out on the deck, etc. leaving almost all > papers in storage, getting rid of a lot of books, etc. and i only bring > one in the house at a time to read, doesn't bother me.. > > sauna is great although i was doing it at 140 degrees which is what dr > rea says--140 for 20-30 minutes but find it depleting and giving me a > headache so last nite i went back to 120 degrees which is what i used to > sauna at, more comfortable for me adn i am sure at any temp it has a > positive effect. > > mostly we are just worn out from this ongoing horror of sick adult > child, a 21 going on 2 yo to care for for how long??? till we die of > exhaustion??? i don't know, and then what for him if he even outlives > us???? add the move to that which isn't even a regular move with all the > cleanign and disposing of stuff...then the financial burden of > ridiculous medical bills and 2 residences, a wonder we don't all go out > and shoot ourselves, eh?? > > I think genes have little to do with it, sick son and i both have > dreaded genotype (multisusceptible + low msh genes), younger healthy son > has multisusceptible times 2, hubby multisusceptible....go figure... > > > sue v > > > >You people are going thru some tough times....does your husband protect > >himself? My husband is sorting thru our storage, he puts on disposable > >hazmet suit, goggles, mask, & gloves. After using it for the 1st time > >he did not have a cough. How is your husband doing being exposed? I am > >staying away b/c last week after being around our moldy RV I had > >migraines/headaches for 4 days. > > > >Your son how is he now? I will keep him in prayer and you two. Sue, > >is the sauna helping you? I sure hope so? Your younger son fared OK in > >the mold? Genes, eh? > > > >I am praying for all of you, > >Diane > > > > > Quote Link to comment Share on other sites More sharing options...
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