Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi Rich and Everybody, As some of you know, right now I'm trying to get a sensitive test to see if I have Lyme Disease. (I've been bedridden for 23 years, and am getting worse, not better.) If I do test positive for Lyme, what are the treatments for a chronic patient like myself? Thanks. Naomi Weisstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 The best recommendation is to work with a good Lyme-literate doctor open to natural therapies, because ABX will not do much for most people with long-term cases, and you may find tolerating stiff die-off from ABX difficult if you have disabled or exhausted adrenals. Probably everything depends on how well you can detox. One alternative treatment that has helped many people with Lyme, including long-term bedridden, is Salt/C. I don't think anyone really knows how it is working, although there is no lack of theories, but it does help some people. It took me from about 10% functional to around 35%. Some people have done better than that. The most obvious benefits are that Salt will help your hydration and blood volume, and both Salt and C support the adrenals. Also the combination appears to 'pickle' the gut, helping fix some dysbiosis. And the immune system benefits also from the combination. If you are interested in this I suggest you join the group 'LymeStrategies' and also read my blog about my own experience (www.kurtsprotocol.blogspot.com <http://www.kurtsprotocol.blogspot.com/> ). There is no research yet on Salt/C, but there are many monthly reports in the Files section of the LymeStrategies group that will provide you with some idea about how it works. Another thing to try - EMF avoidance and microwave blocking has taken me now up to about 50% functional. I have only had bad CFS for 10 years (and Lyme for 18 years), don't know how this would work for someone in your condition. --Kurt SPAM-LOW: treatment for Lyme Hi Rich and Everybody, As some of you know, right now I'm trying to get a sensitive test to see if I have Lyme Disease. (I've been bedridden for 23 years, and am getting worse, not better.) If I do test positive for Lyme, what are the treatments for a chronic patient like myself? Thanks. Naomi Weisstein This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Kurt...did you or anybody ever hear of IV hydrochloric acid? I was curious as I was reading about it and thinking about how it's hydrogen and chloride--electron bomb and an acid. BTW, I just went into my caulk bedroom again to clear out some stuff. I still get brain foggy in there and I smell stuff to see if its okay and then I get another dose and get totally brain foggy. Two laptop computer totebags, stored in the corner, one of them really smelled like it. As I've said, it seems like anything moderately porous even wood absorbed it. I guess I am slowly cleaning out the room except for furniture...I'm thinking I should go in with a really good mop and totally mop with warm soap adn water, the entire floor. Dust obviously absorbed it. The windows are open, its over 45 degrees, in fact its like spring here, near 60, but this stuff is not outgassing or curing. It just stays in the stuff that absorbed it and it is a very distinctive smell. Eventually I may have to repaint the whole room, redo the floors, or what? I don't know. I still cannot handle the room at all. Of course I make it worse by checking stuff with my nose. There is some art in there that is precious to me that I don't want to throw out. One is a beautiful clay wall sculpture I bought from a friend 15 years ago. Right now my brain is totally fogged. These days, an exposure lasts about 20 minutes (the fog). As I said, I've never had quite this response to any chemical before, or been around anything that absorbed so amazingly and horribly into everything. It was like pouring water on to a parched surface, everything just sucked it up and holds onto it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi, Naomi. The conventional medical establishment does not recognize the existence of long-term lyme disease. As has already been mentioned, the so-called Lyme-Literate MDs (LLMDs) (see the ILADS website) use long-term antibiotics, including IV Rocephin, and some rotate antibiotics over the course of time to counter the development of resistance on the part of the bacteria. This does work for some of the people, but others seem to continue to be on antibiotics and don't really get cured. Dr. ph Burrascono and Dr. Raphael Stricker are a couple of the leaders of this group. Dr. Burrascano successfully fought off an attempt by the New York state medical board to revoke his license a couple of years ago. He has an updated set of guidelines on the internet for dealing with long-term Lyme cases. Some people (such as Dr. Rentz) use silver hydrosol (such as is sold by www.allergyresearchgroup.com). Some (such as Dr. Floyd Taub) use Taurox (aka Cobat). Some (such as Dr. Lee Cowden) use Samento. Some (such as Dr. Rowan) use oxidative therapies. Some (such as Dr. Dietrich Klinghardt, though he uses a lot of other innovative things as well) use the salt/vitamin C combination. Some use Rife machines and other electromagnetic therapies. Dr. Ritchie Shoemaker has emphasized that some people are born with certain genotypes of the HLA DR proteins that make it impossible for their immune systems to destroy the biotoxins that are produced by the Lyme bacteria. In these cases, it is not enough to kill the bacteria. One must also deal with the toxins. He does this with cholestyramine and some diabetes drugs (Actos and Avandia) among other things. I don't think anyone has terrific success in curing long-term Lyme in adults, but I'm willing to be corrected if I'm wrong about that. Dr. Ray told me that if he keeps working with kids who have Lyme, using antibiotics, he is eventually able to achieve a cure in every case. (Note that he is now under fire by his state medical board, who are trying to take away his license. I think this is very unfortunate, and that it says more about the board than it does about Dr. and his practice. The patients and their parents just love him.) Those are the things I've heard about. Rich > > Hi Rich and Everybody, > > As some of you know, right now I'm trying to get a sensitive test to see if > I have Lyme Disease. (I've been bedridden for 23 years, and am getting > worse, not better.) If I do test positive for Lyme, what are the treatments > for a chronic patient like myself? > > Thanks. > > Naomi Weisstein > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Hi Kurt, Thanks so much for yr reply to my query. What exactly is salt/C? Do you buy a preparation, or do you increase your salt and vita C intake on yr own? Naomi Weisstein SPAM-LOW: treatment for Lyme > > Hi Rich and Everybody, > > As some of you know, right now I'm trying to get a sensitive test to see > if > I have Lyme Disease. (I've been bedridden for 23 years, and am getting > worse, not better.) If I do test positive for Lyme, what are the > treatments > for a chronic patient like myself? > > Thanks. > > Naomi Weisstein > > > > > This list is intended for patients to share personal experiences with > each other, not to give medical advice. If you are interested in any > treatment discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Hi Rich, Thank you so much for yr thoro reply to my questions about Lyme treatment. Is the salt/C vita combination anything like the Blaisi Recuperation packet, or is it a different thing altogether? I've been on the Blaisi protocol for ten months now and have seen no improvement. In fact, I've been experiencing a slow decline. Naomi Weisstein Re: treatment for Lyme > Hi, Naomi. > > The conventional medical establishment does not recognize the > existence of long-term lyme disease. > > As has already been mentioned, the so-called Lyme-Literate MDs > (LLMDs) (see the ILADS website) use long-term antibiotics, including > IV Rocephin, and some rotate antibiotics over the course of time to > counter the development of resistance on the part of the bacteria. > This does work for some of the people, but others seem to continue > to be on antibiotics and don't really get cured. Dr. ph > Burrascono and Dr. Raphael Stricker are a couple of the leaders of > this group. Dr. Burrascano successfully fought off an attempt by > the New York state medical board to revoke his license a couple of > years ago. He has an updated set of guidelines on the internet for > dealing with long-term Lyme cases. > > Some people (such as Dr. Rentz) use silver hydrosol (such as is > sold by www.allergyresearchgroup.com). > > Some (such as Dr. Floyd Taub) use Taurox (aka Cobat). Some (such as > Dr. Lee Cowden) use Samento. Some (such as Dr. Rowan) use > oxidative therapies. Some (such as Dr. Dietrich Klinghardt, though > he uses a lot of other innovative things as well) use the > salt/vitamin C combination. Some use Rife machines and other > electromagnetic therapies. > > Dr. Ritchie Shoemaker has emphasized that some people are born with > certain genotypes of the HLA DR proteins that make it impossible for > their immune systems to destroy the biotoxins that are produced by > the Lyme bacteria. In these cases, it is not enough to kill the > bacteria. One must also deal with the toxins. He does this with > cholestyramine and some diabetes drugs (Actos and Avandia) among > other things. > > I don't think anyone has terrific success in curing long-term Lyme > in adults, but I'm willing to be corrected if I'm wrong about that. > > Dr. Ray told me that if he keeps working with kids who > have Lyme, using antibiotics, he is eventually able to achieve a > cure in every case. (Note that he is now under fire by his state > medical board, who are trying to take away his license. I think > this is very unfortunate, and that it says more about the board than > it does about Dr. and his practice. The patients and their > parents just love him.) > > Those are the things I've heard about. > > Rich > > > > > > > Hi Rich and Everybody, > > > > As some of you know, right now I'm trying to get a sensitive test > to see if > > I have Lyme Disease. (I've been bedridden for 23 years, and am > getting > > worse, not better.) If I do test positive for Lyme, what are the > treatments > > for a chronic patient like myself? > > > > Thanks. > > > > Naomi Weisstein > > > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Hi, Naomi. I think the salt/C treatment is quite different from the Blasi protocol. Both contain some sodium, but I think the salt/C protocol involves quite a bit more sodium chloride, as well as quite a bit of vitamin C. The Blasi protocol includes other ionic species beside sodium chloride. I don't think the Blasi protocol is intended as a treatment of Lyme disease. Alfred Blasi had fibromyalgia. Rich > > > > > > Hi Rich and Everybody, > > > > > > As some of you know, right now I'm trying to get a sensitive test > > to see if > > > I have Lyme Disease. (I've been bedridden for 23 years, and am > > getting > > > worse, not better.) If I do test positive for Lyme, what are the > > treatments > > > for a chronic patient like myself? > > > > > > Thanks. > > > > > > Naomi Weisstein > > > > > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Naomi, I had a terrible time with recup and stopped. It's taken months to get back to where I was, although much of that had to do with unusual stress. My take on recup is that, as with everything else, its effects have a lot to do with where you are metabolically, and the adverse effects some see are signs to stop or slow down until the underlying issues are solved. Ellen > Hi Rich, > > Thank you so much for yr thoro reply to my questions about Lyme treatment. > Is the salt/C vita combination anything like the Blaisi Recuperation > packet, > or is it a different thing altogether? I've been on the Blaisi protocol > for > ten months now and have seen no improvement. In fact, I've been > experiencing > a slow decline. > > Naomi Weisstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 I take both Recup and Salt/C and the effect is both similar and also completely different. I have found that I do best with a small amount of Recup (1/2 or 1 packet sipped through the day) and a half to full dose of salt/c (4-8g). The Recup seems to help something neurological, it improves sleep, and is settling. Perhaps part of that is the magnesium, which is probably better absorbed in the Recup perfect balance. The Salt/C seems to dramatically help the adrenals, and possibly the heart (blood volume?), and also keeps my digestion working like it did before CFS. --Kurt SPAM-MED: Re: Re: treatment for Lyme Naomi, I had a terrible time with recup and stopped. It's taken months to get back to where I was, although much of that had to do with unusual stress. My take on recup is that, as with everything else, its effects have a lot to do with where you are metabolically, and the adverse effects some see are signs to stop or slow down until the underlying issues are solved. Ellen > Hi Rich, > > Thank you so much for yr thoro reply to my questions about Lyme treatment. > Is the salt/C vita combination anything like the Blaisi Recuperation > packet, > or is it a different thing altogether? I've been on the Blaisi protocol > for > ten months now and have seen no improvement. In fact, I've been > experiencing > a slow decline. > > Naomi Weisstein This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Where do you get the Recup perfect balance? > > I take both Recup and Salt/C and the effect is both similar and also > completely different. I have found that I do best with a small amount > of Recup (1/2 or 1 packet sipped through the day) and a half to full > dose of salt/c (4-8g). > > The Recup seems to help something neurological, it improves sleep, and > is settling. Perhaps part of that is the magnesium, which is probably > better absorbed in the Recup perfect balance. > > The Salt/C seems to dramatically help the adrenals, and possibly the > heart (blood volume?), and also keeps my digestion working like it did > before CFS. > > --Kurt > > SPAM-MED: Re: Re: treatment for Lyme > > Naomi, > > I had a terrible time with recup and stopped. It's taken months to get > back > to where I was, although much of that had to do with unusual stress. My > take > on recup is that, as with everything else, its effects have a lot to do > with > where you are metabolically, and the adverse effects some see are signs > to > stop or slow down until the underlying issues are solved. > > Ellen > > > > Hi Rich, > > > > Thank you so much for yr thoro reply to my questions about Lyme > treatment. > > Is the salt/C vita combination anything like the Blaisi Recuperation > > packet, > > or is it a different thing altogether? I've been on the Blaisi > protocol > > for > > ten months now and have seen no improvement. In fact, I've been > > experiencing > > a slow decline. > > > > Naomi Weisstein > > > > This list is intended for patients to share personal experiences with > each other, not to give medical advice. If you are interested in any > treatment discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
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