Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 If you don't clear the heavy metals you won't clear the Lyme bacterium!! Castiglia, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 The Homeopathic remedy for lymes is Ledum 1m. Farah Crawford <freyja42@...> wrote: A lot of my clients have or have had Lymes, Call me and I'll share my experience. A Crawford HHC(518)828-5582@...Ann & Rob Riner wrote:> Does anyone have a protocal for Lymes? A homoepathic, extra vitamins > or herbs?> Thanks> Ann> riners@...>>> ............................................>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Hi Barbara, I used the Igenex Lyme Western Blot IGG and IGA test initially. Once I recieved my results I then decided to have several other co infections tested which included Babesia WA-!, two Bartonella tests , and two Ehrlichiosis through them. I understand the test is reliable for second generation testing also. My son tested positive.. I had thought I had CFS by itself for 17 years before I had these tests. I have also been treated for Tape and Round worms which made a huge difference with gut issues in the last month or so. Sue T shannah9 <brfifield@...> wrote: I'm wondering if anyone can shed some light for me. If one is going to test for Lyme, is Igenex the most reliable lab to have this done at or are there others? Is there a specific test one asks for? Also, I understand that Lyme can be passed from mother to child while pregnant. Can the test be relied upon to pick up second generation infections? Thanks so much, Barbara 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 November 17, 2005 Report Share Posted November 17, 2005 Hi, Barbara. Based on what I have heard at the OHM Lyme conference and from doctors who are experienced in dealing with Lyme disease, I think that Igenex and Immunosciences Lab have some of the best tests for Lyme disease. MDLab in New Jersey has good tests, too, from what I've heard. As far as I know, the Bowen lab test does not discriminate between Lyme spirochetes and other spirochetes that are in the body but do not cause problems, so it can give false positives. Both the Igenex tests and the Immunosciences Lab tests are specific. I would suggest that you contact the labs to ask which test they think is most appropriate. I think that Dr. Nick at Igenex has a sequence he suggests. Dr. Ari Vojdani at Immunosciences seems to recommend his whole set of tests so as to minimize false negatives. It's true that Lyme can be transmitted from the mother to the baby in utero. I don't know how well the tests do on second generation infections. I suggest you ask Nick at Igenex and Ari Vojdani at Immunosciences. The websites are http://www.igenex.com and http://www.immuno-sci-lab.com Rich > > I'm wondering if anyone can shed some light for me. > > If one is going to test for Lyme, is Igenex the most reliable lab to > have this done at or are there others? Is there a specific test one > asks for? > > Also, I understand that Lyme can be passed from mother to child while > pregnant. Can the test be relied upon to pick up second generation > infections? > > Thanks so much, > Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Hi Sue, Thanks so much for getting back to me. What was the treatment prescribed for the Lyme and has it been successful for you and your son? Barbara From: Sue T Sent: Wednesday, November 16, 2005 8:16 PM Subject: Re: Lyme Hi Barbara, I used the Igenex Lyme Western Blot IGG and IGA test initially. Once I recieved my results I then decided to have several other co infections tested which included Babesia WA-!, two Bartonella tests , and two Ehrlichiosis through them. I understand the test is reliable for second generation testing also. My son tested positive.. I had thought I had CFS by itself for 17 years before I had these tests. I have also been treated for Tape and Round worms which made a huge difference with gut issues in the last month or so. Sue T shannah9 <brfifield@...> wrote: I'm wondering if anyone can shed some light for me. If one is going to test for Lyme, is Igenex the most reliable lab to have this done at or are there others? Is there a specific test one asks for? Also, I understand that Lyme can be passed from mother to child while pregnant. Can the test be relied upon to pick up second generation infections? Thanks so much, Barbara 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 November 17, 2005 Report Share Posted November 17, 2005 Rich, Thank you for taking the time to pass on these solid leads and direction. Much appreciated. Barbara Re: Lyme Hi, Barbara. Based on what I have heard at the OHM Lyme conference and from doctors who are experienced in dealing with Lyme disease, I think that Igenex and Immunosciences Lab have some of the best tests for Lyme disease. MDLab in New Jersey has good tests, too, from what I've heard. As far as I know, the Bowen lab test does not discriminate between Lyme spirochetes and other spirochetes that are in the body but do not cause problems, so it can give false positives. Both the Igenex tests and the Immunosciences Lab tests are specific. I would suggest that you contact the labs to ask which test they think is most appropriate. I think that Dr. Nick at Igenex has a sequence he suggests. Dr. Ari Vojdani at Immunosciences seems to recommend his whole set of tests so as to minimize false negatives. It's true that Lyme can be transmitted from the mother to the baby in utero. I don't know how well the tests do on second generation infections. I suggest you ask Nick at Igenex and Ari Vojdani at Immunosciences. The websites are http://www.igenex.com and http://www.immuno-sci-lab.com Rich > > I'm wondering if anyone can shed some light for me. > > If one is going to test for Lyme, is Igenex the most reliable lab to > have this done at or are there others? Is there a specific test one > asks for? > > Also, I understand that Lyme can be passed from mother to child while > pregnant. Can the test be relied upon to pick up second generation > infections? > > Thanks so much, > Barbara > 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 November 17, 2005 Report Share Posted November 17, 2005 Hi Barbara, I am only treating with vit and minerals, enzymes, probiotics at this time. My Liver can not tolerate much else. ABX don't always work even after years of tretment so I will not risk it especially with my liver enzyme defect. Sue Barbara <brfifield@...> wrote: Hi Sue, Thanks so much for getting back to me. What was the treatment prescribed for the Lyme and has it been successful for you and your son? Barbara From: Sue T Sent: Wednesday, November 16, 2005 8:16 PM Subject: Re: Lyme Hi Barbara, I used the Igenex Lyme Western Blot IGG and IGA test initially. Once I recieved my results I then decided to have several other co infections tested which included Babesia WA-!, two Bartonella tests , and two Ehrlichiosis through them. I understand the test is reliable for second generation testing also. My son tested positive.. I had thought I had CFS by itself for 17 years before I had these tests. I have also been treated for Tape and Round worms which made a huge difference with gut issues in the last month or so. Sue T shannah9 <brfifield@...> wrote: I'm wondering if anyone can shed some light for me. If one is going to test for Lyme, is Igenex the most reliable lab to have this done at or are there others? Is there a specific test one asks for? Also, I understand that Lyme can be passed from mother to child while pregnant. Can the test be relied upon to pick up second generation infections? Thanks so much, Barbara 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 November 17, 2005 Report Share Posted November 17, 2005 > > I'm wondering if anyone can shed some light for me. > > If one is going to test for Lyme, is Igenex the most reliable lab to > have this done at or are there others? Is there a specific test one > asks for? > > Also, I understand that Lyme can be passed from mother to child while > pregnant. Can the test be relied upon to pick up second generation > infections? > > Thanks so much, > Barbara > Hi Barbara, I had my tests done at Igenex, after 11 years of dx of CFS, FMS, and MCS. I did an initial screening with the Lyme Western Blot IgM and IgG, which I showed positive on both. However, because of the complexities of the organism, people with infections will not always test positive. There are other tests that can be done as follow ups or initially, depending on finances or insurance coverage, if those tests don't give clear answers. I was also screened for other tick borne infections, only showing one additional infection at the initial screening. Now, after two years of treatment, I have recently tested positive to a third one, and am having significant improvement while treating it. Children who had the infection passed in utero may show up positive on these tests, with all the usual problesm that anyone may have. Here is a list of the known reasons why someone might be infected, but not test positive: REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR 1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochete are deep in host tissue 5. Blebs in body fluid, no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10.Utilization of host protease instead of microbial protease 11.Spirochete in dormancy phase 12.Recent antibiotic treatment 13.Recent anti-inflammatory treatment 14.Concomitant infection with babesia may cause immunosuppression 15.Other causes of immunosuppression 16.Lab with poor technical capability for Lyme disease 17.Lab tests not standardized for late stage disease 18.Lab tests labeled " for investigational use only " 19.CDC criteria is epidemiological, not a diagnostic criteria Your best chance for a good diagnosis is to see a Lyme Literate MD, someone who is knowledgeable about Lyme. They will understand all of this information, know where and how to test, and how to interpret the tests. My then 20 year old also has turned out to have Lyme. He came up indeterminate on the tests, but a month of abx treatment brought out two very clear, perfect bull's eye rashes. Since then, he has had continous and consistent improvement while in treatment. My treatment has not been as easy, but I am also doing better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2005 Report Share Posted November 18, 2005 Hi, Bowen lab seems to be the most recommended on the EuroLyme forum. I believe they also include the common co-infections like Babesia, Ehrlichia etc for no extra charge. Best wishes, Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 What exactly are these drs doing? PCR? > I know several doctors who have been finding spiro's in almost > everybody they test. > The interesting part is, although they are suffering from a great > variety of problems, not all are noticeably sick and few would qualify > as the type of CFS we saw in Incline. > > The fat lady isn't singing just yet. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 > > What exactly are these drs doing? PCR? Bradford Darkfield microscopy " live blood " . They say it takes a while to search, but they eventually hit paydirt. One is a Doxy proponent, the other is Tinidazole. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 , I looked like the cfs patients in Incline. My son does not, nor does my husband. We ALL have borrelia. My son is only 32. When he is fifty he may look like I did at 50. I hope not. If syphillis is the great masquerader then borrelia is also. It can look like a lot of things. And we don't know what the combos look like. Maybe the kids in Truckee all got hit with an airborne mycoplasma infection on top of already having something else like borrelia. Then you add on toxic mold in that building. It is a confusing mess. But I wouldn't want to minimize the risk of tick borne infections. Heck, they used to tell us in South Carolina if your kid got Rocky Mt. Spotted Fever and lived to tell about it you were home free. Now we know that there is a chronic form of rickettsia. None of this is simple as you know. a > > I know several doctors who have been finding spiro's in almost > everybody they test. > The interesting part is, although they are suffering from a great > variety of problems, not all are noticeably sick and few would qualify > as the type of CFS we saw in Incline. > > The fat lady isn't singing just yet. > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Yes my partner and I both have borrelia. I have all the hallmark CFS symptoms and he doesn't but then I also have other infections on top of the Borrelia. Babesia and Chlamydia Pneumonia. Maybe that makes a difference Re: Lyme , I looked like the cfs patients in Incline. My son does not, nor does my husband. We ALL have borrelia. My son is only 32. When he is fifty he may look like I did at 50. I hope not. If syphillis is the great masquerader then borrelia is also. It can look like a lot of things. And we don't know what the combos look like. Maybe the kids in Truckee all got hit with an airborne mycoplasma infection on top of already having something else like borrelia. Then you add on toxic mold in that building. It is a confusing mess. But I wouldn't want to minimize the risk of tick borne infections. Heck, they used to tell us in South Carolina if your kid got Rocky Mt. Spotted Fever and lived to tell about it you were home free. Now we know that there is a chronic form of rickettsia. None of this is simple as you know. a > > I know several doctors who have been finding spiro's in almost > everybody they test. > The interesting part is, although they are suffering from a great > variety of problems, not all are noticeably sick and few would qualify > as the type of CFS we saw in Incline. > > The fat lady isn't singing just yet. > - 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 February 8, 2006 Report Share Posted February 8, 2006 THis is vague. Which doctors, what tests, and what " spiros " . > > I know several doctors who have been finding spiro's in almost > everybody they test. > The interesting part is, although they are suffering from a great > variety of problems, not all are noticeably sick and few would qualify > as the type of CFS we saw in Incline. > > The fat lady isn't singing just yet. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 A doctor I highly respect who now taught herself microscopy thinks Bradfield is bullcrap. I don't know myself, but in any case I would trust Igenex western blot and their fish test for babesia (on wihch I tested positive the first attempt). Even on Stonybrook I always tested positive--originally only band 93, as I'd had it for years, since 21, and didn't know it and was doing relatively well with just one strain, though I did have various problems that Inever would've had otherwise; but badn 93 is diagnostic for late stage; and then second bite, I tested HIGHLY positive on elisa and western blot. So, I'm not too enamored of these outlier tests by practitoiners who are not microbiologists. They might not know what they're seeing and who knows what other flagellate type organisms are around. We have them in our mouth for instance and they are harmless spirochetes. > > > > What exactly are these drs doing? PCR? > > Bradford Darkfield microscopy " live blood " . > They say it takes a while to search, but they eventually hit paydirt. > One is a Doxy proponent, the other is Tinidazole. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 I agree with Jill. I would advise skepticism with this. There is an artifact caused by red cell membranes. They can bleb out into long " strings " . I have some images of these, as well as a short paper on the history of their being occasionally mistaken for spirochetes. It shouldnt be too difficult to strongly verify or discharge observations of possible Borrelia burgdorferi in the blood. One needs to get access to an epifluorescence microscope, and buy a $200 tube of fluorescent anti-Bb polyclonal antibody. If the little dudes glow, bingo. If not, its very unlikely to be Bb. I actually had a Bradford analysis myself (how this came to pass is a long story). More than once I asked the analyst (a naturopath) how he knew this was this and that was that, and he just appealed to the authority of Bradford, the originator of the school. Ie, he didnt have knowledge of particular experiments justifying what he was saying. > > One is a Doxy proponent, the other is Tinidazole. Using both of those at once is far more effective, IMO. Taking doxy alone is likely to be a waste of time for most people. ----------------------------- > A doctor I highly respect who now taught herself microscopy thinks > Bradfield is bullcrap. I don't know myself, but in any case I would > trust Igenex western blot and their fish test for babesia (on wihch I > tested positive the first attempt). > > Even on Stonybrook I always tested positive--originally only band 93, > as I'd had it for years, since 21, and didn't know it and was doing > relatively well with just one strain, though I did have various > problems that Inever would've had otherwise; but badn 93 is diagnostic > for late stage; and then second bite, I tested HIGHLY positive on > elisa and western blot. So, I'm not too enamored of these outlier > tests by practitoiners who are not microbiologists. They might not > know what they're seeing and who knows what other flagellate type > organisms are around. We have them in our mouth for instance and they > are harmless spirochetes. > > > > > > > > What exactly are these drs doing? PCR? > > > > Bradford Darkfield microscopy " live blood " . > > They say it takes a while to search, but they eventually hit paydirt. > > One is a Doxy proponent, the other is Tinidazole. > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 For those who may not be familiar with the Lyme tests please do not confuse Bradford microscopy with IgeneX western blots and urine antigen tests. They are totally different. As for babesia tests, it is important to note that Jill became infected in a part of the country where the strain of borrelia and babesia is more likely to fit the type the Quest and LabCorp tests are designed to find. For the rest of the world their tests are more likely to miss the infection. There are at least 17 strains of babesia and even IgeneX is only testing for one. Chances are you are wasting your money on any babesia test. A good Lyme doc will know if your symptoms look like a co-infection with babesia and he/she should treat you with a few weeks of Zithromax and Mepron - another treatment that will break the bank if you don't have insurance to cover meds. a Carnes > > I agree with Jill. I would advise skepticism with this. > > There is an artifact caused by red cell membranes. They can bleb out > into long " strings " . I have some images of these, as well as a short > paper on the history of their being occasionally mistaken for > spirochetes. > > It shouldnt be too difficult to strongly verify or discharge > observations of possible Borrelia burgdorferi in the blood. One needs > to get access to an epifluorescence microscope, and buy a $200 tube > of fluorescent anti-Bb polyclonal antibody. If the little dudes glow, > bingo. If not, its very unlikely to be Bb. > > I actually had a Bradford analysis myself (how this came to pass is a > long story). More than once I asked the analyst (a naturopath) how he > knew this was this and that was that, and he just appealed to the > authority of Bradford, the originator of the school. Ie, he didnt > have knowledge of particular experiments justifying what he was > saying. > > > > One is a Doxy proponent, the other is Tinidazole. > > Using both of those at once is far more effective, IMO. Taking doxy > alone is likely to be a waste of time for most people. > > ----------------------------- > > > A doctor I highly respect who now taught herself microscopy thinks > > Bradfield is bullcrap. I don't know myself, but in any case I would > > trust Igenex western blot and their fish test for babesia (on wihch > I > > tested positive the first attempt). > > > > Even on Stonybrook I always tested positive--originally only band > 93, > > as I'd had it for years, since 21, and didn't know it and was doing > > relatively well with just one strain, though I did have various > > problems that Inever would've had otherwise; but badn 93 is > diagnostic > > for late stage; and then second bite, I tested HIGHLY positive on > > elisa and western blot. So, I'm not too enamored of these outlier > > tests by practitoiners who are not microbiologists. They might not > > know what they're seeing and who knows what other flagellate type > > organisms are around. We have them in our mouth for instance and > they > > are harmless spirochetes. > > > > > > > > > > > > What exactly are these drs doing? PCR? > > > > > > Bradford Darkfield microscopy " live blood " . > > > They say it takes a while to search, but they eventually hit > paydirt. > > > One is a Doxy proponent, the other is Tinidazole. > > > - > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 I should add my quest test was negative, FORGET quest. BTW I did not ask for a quest test, a holistic doc just decided to do it when I told him I have lyme. Stonybrook used to be very reputable but they may have gotten hoodwinked and corrupted over time. I would only use Igenex. I used Igenex for my babesia test, the fish rna test is very accurate imo, better than PCR. I don't need a test for borrelia as I had the bullseye rash and then the highly positive tests from Stonybrook. But definitely, Igenex is the ticket. > > > > > > > > > > What exactly are these drs doing? PCR? > > > > > > > > Bradford Darkfield microscopy " live blood " . > > > > They say it takes a while to search, but they eventually hit > > paydirt. > > > > One is a Doxy proponent, the other is Tinidazole. > > > > - > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Well I'm confused. It sounds as if IgeneX just keeps testing until a positive Lymes develops somewhere along the way, even for people who have not had a tick bite. I wonder if this would also be true for those who show no symptoms of CFS or Lymes. Then again, it sounds as if some are saying that Lymes is always the precursor of CFS. What about those who may not test positive for Lymes? Would that mean they are dealing with something altogether different and their CFS symptoms have developed from a different source? Sorry if this sounds elementary. I just recently discovered this site and I see that most here are much more facile with the terms and certainly have a greater understanding of the whole picture than I. Ballady > > > > > > > > > > > > What exactly are these drs doing? PCR? > > > > > > > > > > Bradford Darkfield microscopy " live blood " . > > > > > They say it takes a while to search, but they eventually hit > > > paydirt. > > > > > One is a Doxy proponent, the other is Tinidazole. > > > > > - > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 I really have rarely heard of this happening. Most folks do test positive at Igenex after a negative Quest test. Quest is negative because they're huge, don't take the time, and follow CDC guidelines that #1) leave out important diagnostic bands and #2) require 5 bands for a positive EVEN THO you could not obtain even one of certain diagnostic bands without exposure. I know of very few people who get repeated testing and test negative. And the western strain of babesia, wa1, has a state test that is free in California from what I understand. CFS is just a description of symptoms so no, not all CFS will be caused by lyme. But a lot of it is. It's really straightforward, there is nothing confusing. If you have CFS you should test for lyme and coinfections at Igenex, period. Then if you are near a good LLMD and have the funds or he will take insurance, have him do it and get a clinical opinion too on your symptoms. > > > > > > > > > > > > > > What exactly are these drs doing? PCR? > > > > > > > > > > > > Bradford Darkfield microscopy " live blood " . > > > > > > They say it takes a while to search, but they eventually hit > > > > paydirt. > > > > > > One is a Doxy proponent, the other is Tinidazole. > > > > > > - > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 On Feb 8, 2006, at 9:46 AM, ballady4 wrote: > Well I'm confused. > > It sounds as if IgeneX just keeps testing until a positive Lymes > develops somewhere along the way, even for people who have not had a > tick bite. I wonder if this would also be true for those who show no > symptoms of CFS or Lymes. Not quite. Lyme comes in scores of variants -- some regional, some dependent on the species of tick or host, etc. Most Lyme tests are designed to pick up just a few variants. If you have one of the ones it doesn't test for, you come up with a false negative. IgeneX has a far more sensitive test than anyone else, designed to detect a much wider range of Lyme variants. Therefore, you're more likely to get an accurate result with their test. > Then again, it sounds as if some are saying that Lymes is always the > precursor of CFS. What about those who may not test positive for > Lymes? Would that mean they are dealing with something altogether > different and their CFS symptoms have developed from a different > source? Ballady, I think it's pretty much a given that we're a very mixed bag here. ME/CFS appears to be caused by a rather wide range of possible agents; at this stage, it's not likely that we will ever find just one cause that covers everybody diagnosed with this illness. It's arguable that the term " ME/CFS " is very likely covering several different diseases that end up having a similar effect on the body and its systems. Lyme seems to be emerging as one of the most common agents that bring on this symptom set. We're not sure yet how common it is in ME patients, though it's clear that it's probably one of the big players. (I've seen estimates that 60-80% of us could be carrying this.) Since it's fairly well treatable by knowledgeable doctors, it's worthwhile to find out if you've got it. After all, if you do come up positive, treating for Lyme could resolve a good chunk of your issues. Our own Rich VanK has put together a pretty comprehensive list of conditions that can contribute to ME (or are caused by ME, and contribute to our symptoms), along with suggestions for how to test for and treat each of them. I've given an annotated copy of this to my own doctor, and we're presently working our way through the ones that have been missed over the years. The list is at <http:// www.cfsresearch.org/cfs/research/treatment/13.htm>. You might find it useful in deciding which areas to attack first. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Hi, Ballady. Here's a repost of a message I posted to the list a few weeks ago. Maybe it will help to shed light on the relationship between CFS and Lyme disease: Hi, Nelly, Sue, Sheila and the group. Thanks very much for posting this. It has really stimulated my thinking about why Lyme disease is symptomatologically so similar to CFS. First, some review. As we all know, it has been terribly difficult to do the differential diagnosis between Lyme disease and CFS. The symptoms overlap considerably, and even the best of the lab tests do not have the sensitivity and selectivity we would all like to see. Symptoms are manifestations of the pathophysiology of a disease, i.e. how the functioning of the body of the sick person is abnormal as a result of the disease. Therefore, if we see that the symptoms of two diseases are very similar, we should suspect that they must have some aspects of pathophysiology in common. Pathophysiology is intimately involved with abnnormal gene expression in the cells of the sick person, because gene expression is a reflection of how the cell is conducting its business, and the misconduct of the business of the cell is pathophysiology. Because of this, I was quite struck some time ago when Sheila reported that Dr. Gow said in a recent talk that he had found that the gene expression pattern in peripheral blood mononuclear cells (monocytes and lymphocytes) is " identical " in CFS and Lyme disease. This implies that the pathophysiology of these two disorders in these cell types is the same. (Note that we can't say anything about what's going on in other cell types in the body in these two disorders from this work. There are no doubt different things that happen in other cell types between Lyme and CFS, and so this is not saying that the two are identical in every way. But in these mononuclear cells, this is saying that the pathophysiology of the two is the same.) As you know, I am of the firm view that in at least a large subset of CFS there is glutathione depletion. In another subset, it looks as though there are genetic variations in the enzymes that make use of glutathione (glutathione transferases and glutathione peroxidases), and the results in terms of pathophysiology are much the same, even though the first group has low glutathione, and the second group may have elevated glutathione. In either subset, the people do not have normal glutathione function. As you also know, based on the work by the DAN! project in autism, I now believe that the basic abnormalities in the biochemistry in autism and CFS are the same or similar. The glutathione depletion brings down the methylation cycle, and a vicious circle develops that produces a host of problems because of the depletion of SAMe (the main methylator in the body), cysteine, glutathione, taurine and sulfate. So, if the pathophysiology of CFS involves the inability to use glutathione effectively, whether because glutathione itself is depleted or because the enzymes that use it have below-normal activity, and if the pathophysiology of CFS and Lyme are indeed identical, then it follows that there must be a problem with the glutathione system in Lyme disease as well. With that introduction, let me now review some things I found in the literature, including the paper to which you (Nelly) drew my attention. I will give the PubMed ID numbers for the references that support these statements. (PMID 1477785) First, in in vitro experiments it has been found that the growth of Borrelia burgdorferi (Bb), the bacterium that causes Lyme disease, is decreased by 80% if cysteine is not present in the culture medium. (PMID 147785) It has been found that cysteine diffuses passively into Bb, i.e. there is no active transporter protein that pumps it into the bacterium. (PMID 1477785) It has been found that Bb incorporates cysteine in three of its proteins. One has a mass of 22 kilodaltons. The others have been identified as outer surface protein A (Osp A), with a mass of 30 kilodaltons, and outer surface protein B (Osp , with a mass of 34 kilodaltons. (PMID 1639493) Bb produces a water-soluble hemolysin. This is a substance that is able to break down red blood cells and release their hemoglobin. It is likely that this substance incorporates a cysteine residue, and this cysteine must be in its reduced state in order for the hemolysin to break down red blood cells. (PMID 16390443) Bb does not produce glutathione, which is the principal non-protein thiol (substance containing an S-H or sulfhydryl group) in human cells. Instead, Bb cells have a high concentration (about 1 millimolar) of reduced coenzyme A (CoASH). Bb also produces a CoA disulfide reductase enzyme that has the responsibility to keep CoASH in its chemically reduced form, so it can function. This enzyme is in turn reduced by NADH (reduced nicotinamide adenine dinucleotide), which is reduced by metabolism of Bb's fuel. (This is analogous to glutathione reductase in human cells, which requires NADPH, which in turn is reduced by the pentose phosphate shunt on glycolysis, which metabolizes glucose as fuel.) In Bb, CoASH is able to reduce hydrogen peroxide, as glutathione peroxidase, together with glutathione, do in human cells. (PMID 11687735) It has been found that when people were infected with Bb and had the characteristic erythema migrans (bulls-eye rash), the total thiol and glutathione in blood analysis were found to be significantly decreased. The activity of glutathione peroxidase was also significantly decreased. Malondialdehyde, a marker for lipid peroxidation, was significantly elevated. After antibiotic treatment with amoxycillin, which eliminated the acute symptoms of Lyme disease, both the total thiol and the glutathione levels recovered to normal. However, the glutathione peroxidase activity was still significantly below normal, and the malondialdehyde remained significantly elevated. This suggested that Bb lowers the thiol and glutathione levels in its host, and inhibits the activity of glutathione peroxidase. I think this also suggests that while antibiotic therapy eliminates acute Lyme symptoms and brings recovery of glutathione levels, the Bb infection may still be suppressing the activity of glutathione peroxidase, and this may be a mechanism involved in long-term (or chronic or post-) Lyme disease. One way in which a pathogen can inhibit its host's glutathione peroxidase activity is to hoard selenium, because this is a cofactor for that enzyme. You may recall that that is the mechanism that Prof. Harry has hypothesized for HIV and AIDS (http://www.hdfoster.com). I could not find any reference in the literature connecting Bb and selenium, and I don't know whether anyone has looked at that. Have any of you who are positive for Lyme had your selenium level measured? It seems pretty clear that Bb uses cysteine and that it depletes glutathione and total thiol (which includes cysteine and protein thiols as well as glutathione) in its host, at least in the acute phase. It also suppresses the activity of glutathione peroxidase, but I'm not sure whether it does it by lowering the host's selenium level, or by some other means. This suppression appears as though it could be chronic. I think there is a good chance that this lowering of glutathione and/or suppressing of the activity of glutathione peroxidase could very well be the explanation for the similarities in symptomatology and the " identical " gene expression in the peripheral blood mononuclear cells in CFS and Lyme disease. It may also be that a host whose glutathione has been depleted by other factors may be more vulnerable to developing Lyme disease, once inoculated with Bb. I am speculating a little here, but this is exciting! If this is true, what are the consequences for treatment of long- term Lyme disease, the subject that Sue raised? I think this remains to be seen, but it does suggest that the DAN! autism treatments may have a contribution to make in the treatment of long- term Lyme disease as I've suggested that they also do in the treatment of CFS. Before we can reach such a conclusion, though, I think it behooves us to get more data on glutathione levels, selenium levels, and glutathione peroxidase activity in people with positive tests for long-term Lyme disease, as well as some experience trying these treatments as part of the treatment of long- term Lyme disease. I'm not suggesting that they would replace other treatments for Lyme disease, such as antibiotic therapy, detoxing of neurotoxins, or other approaches to deal with the bacteria themselves or to deal with particular characteristics of Lyme disease that are not found in autism or CFS. Nevertheless, these treatments might make a significant impact. Time will tell. Thanks for rattling my cage about this, Sheila, Sue and Nelly. Rich > > Well I'm confused. > > It sounds as if IgeneX just keeps testing until a positive Lymes > develops somewhere along the way, even for people who have not had a > tick bite. I wonder if this would also be true for those who show no > symptoms of CFS or Lymes. > > Then again, it sounds as if some are saying that Lymes is always the > precursor of CFS. What about those who may not test positive for > Lymes? Would that mean they are dealing with something altogether > different and their CFS symptoms have developed from a different source? > > Sorry if this sounds elementary. I just recently discovered this site > and I see that most here are much more facile with the terms and > certainly have a greater understanding of the whole picture than I. > > Ballady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Hi, Ballady. Here's a repost of a message I posted to the list a few weeks ago. Maybe it will help to shed light on the relationship between CFS and Lyme disease: Hi, Nelly, Sue, Sheila and the group. Thanks very much for posting this. It has really stimulated my thinking about why Lyme disease is symptomatologically so similar to CFS. First, some review. As we all know, it has been terribly difficult to do the differential diagnosis between Lyme disease and CFS. The symptoms overlap considerably, and even the best of the lab tests do not have the sensitivity and selectivity we would all like to see. Symptoms are manifestations of the pathophysiology of a disease, i.e. how the functioning of the body of the sick person is abnormal as a result of the disease. Therefore, if we see that the symptoms of two diseases are very similar, we should suspect that they must have some aspects of pathophysiology in common. Pathophysiology is intimately involved with abnnormal gene expression in the cells of the sick person, because gene expression is a reflection of how the cell is conducting its business, and the misconduct of the business of the cell is pathophysiology. Because of this, I was quite struck some time ago when Sheila reported that Dr. Gow said in a recent talk that he had found that the gene expression pattern in peripheral blood mononuclear cells (monocytes and lymphocytes) is " identical " in CFS and Lyme disease. This implies that the pathophysiology of these two disorders in these cell types is the same. (Note that we can't say anything about what's going on in other cell types in the body in these two disorders from this work. There are no doubt different things that happen in other cell types between Lyme and CFS, and so this is not saying that the two are identical in every way. But in these mononuclear cells, this is saying that the pathophysiology of the two is the same.) As you know, I am of the firm view that in at least a large subset of CFS there is glutathione depletion. In another subset, it looks as though there are genetic variations in the enzymes that make use of glutathione (glutathione transferases and glutathione peroxidases), and the results in terms of pathophysiology are much the same, even though the first group has low glutathione, and the second group may have elevated glutathione. In either subset, the people do not have normal glutathione function. As you also know, based on the work by the DAN! project in autism, I now believe that the basic abnormalities in the biochemistry in autism and CFS are the same or similar. The glutathione depletion brings down the methylation cycle, and a vicious circle develops that produces a host of problems because of the depletion of SAMe (the main methylator in the body), cysteine, glutathione, taurine and sulfate. So, if the pathophysiology of CFS involves the inability to use glutathione effectively, whether because glutathione itself is depleted or because the enzymes that use it have below-normal activity, and if the pathophysiology of CFS and Lyme are indeed identical, then it follows that there must be a problem with the glutathione system in Lyme disease as well. With that introduction, let me now review some things I found in the literature, including the paper to which you (Nelly) drew my attention. I will give the PubMed ID numbers for the references that support these statements. (PMID 1477785) First, in in vitro experiments it has been found that the growth of Borrelia burgdorferi (Bb), the bacterium that causes Lyme disease, is decreased by 80% if cysteine is not present in the culture medium. (PMID 147785) It has been found that cysteine diffuses passively into Bb, i.e. there is no active transporter protein that pumps it into the bacterium. (PMID 1477785) It has been found that Bb incorporates cysteine in three of its proteins. One has a mass of 22 kilodaltons. The others have been identified as outer surface protein A (Osp A), with a mass of 30 kilodaltons, and outer surface protein B (Osp , with a mass of 34 kilodaltons. (PMID 1639493) Bb produces a water-soluble hemolysin. This is a substance that is able to break down red blood cells and release their hemoglobin. It is likely that this substance incorporates a cysteine residue, and this cysteine must be in its reduced state in order for the hemolysin to break down red blood cells. (PMID 16390443) Bb does not produce glutathione, which is the principal non-protein thiol (substance containing an S-H or sulfhydryl group) in human cells. Instead, Bb cells have a high concentration (about 1 millimolar) of reduced coenzyme A (CoASH). Bb also produces a CoA disulfide reductase enzyme that has the responsibility to keep CoASH in its chemically reduced form, so it can function. This enzyme is in turn reduced by NADH (reduced nicotinamide adenine dinucleotide), which is reduced by metabolism of Bb's fuel. (This is analogous to glutathione reductase in human cells, which requires NADPH, which in turn is reduced by the pentose phosphate shunt on glycolysis, which metabolizes glucose as fuel.) In Bb, CoASH is able to reduce hydrogen peroxide, as glutathione peroxidase, together with glutathione, do in human cells. (PMID 11687735) It has been found that when people were infected with Bb and had the characteristic erythema migrans (bulls-eye rash), the total thiol and glutathione in blood analysis were found to be significantly decreased. The activity of glutathione peroxidase was also significantly decreased. Malondialdehyde, a marker for lipid peroxidation, was significantly elevated. After antibiotic treatment with amoxycillin, which eliminated the acute symptoms of Lyme disease, both the total thiol and the glutathione levels recovered to normal. However, the glutathione peroxidase activity was still significantly below normal, and the malondialdehyde remained significantly elevated. This suggested that Bb lowers the thiol and glutathione levels in its host, and inhibits the activity of glutathione peroxidase. I think this also suggests that while antibiotic therapy eliminates acute Lyme symptoms and brings recovery of glutathione levels, the Bb infection may still be suppressing the activity of glutathione peroxidase, and this may be a mechanism involved in long-term (or chronic or post-) Lyme disease. One way in which a pathogen can inhibit its host's glutathione peroxidase activity is to hoard selenium, because this is a cofactor for that enzyme. You may recall that that is the mechanism that Prof. Harry has hypothesized for HIV and AIDS (http://www.hdfoster.com). I could not find any reference in the literature connecting Bb and selenium, and I don't know whether anyone has looked at that. Have any of you who are positive for Lyme had your selenium level measured? It seems pretty clear that Bb uses cysteine and that it depletes glutathione and total thiol (which includes cysteine and protein thiols as well as glutathione) in its host, at least in the acute phase. It also suppresses the activity of glutathione peroxidase, but I'm not sure whether it does it by lowering the host's selenium level, or by some other means. This suppression appears as though it could be chronic. I think there is a good chance that this lowering of glutathione and/or suppressing of the activity of glutathione peroxidase could very well be the explanation for the similarities in symptomatology and the " identical " gene expression in the peripheral blood mononuclear cells in CFS and Lyme disease. It may also be that a host whose glutathione has been depleted by other factors may be more vulnerable to developing Lyme disease, once inoculated with Bb. I am speculating a little here, but this is exciting! If this is true, what are the consequences for treatment of long- term Lyme disease, the subject that Sue raised? I think this remains to be seen, but it does suggest that the DAN! autism treatments may have a contribution to make in the treatment of long- term Lyme disease as I've suggested that they also do in the treatment of CFS. Before we can reach such a conclusion, though, I think it behooves us to get more data on glutathione levels, selenium levels, and glutathione peroxidase activity in people with positive tests for long-term Lyme disease, as well as some experience trying these treatments as part of the treatment of long- term Lyme disease. I'm not suggesting that they would replace other treatments for Lyme disease, such as antibiotic therapy, detoxing of neurotoxins, or other approaches to deal with the bacteria themselves or to deal with particular characteristics of Lyme disease that are not found in autism or CFS. Nevertheless, these treatments might make a significant impact. Time will tell. Thanks for rattling my cage about this, Sheila, Sue and Nelly. Rich > > Well I'm confused. > > It sounds as if IgeneX just keeps testing until a positive Lymes > develops somewhere along the way, even for people who have not had a > tick bite. I wonder if this would also be true for those who show no > symptoms of CFS or Lymes. > > Then again, it sounds as if some are saying that Lymes is always the > precursor of CFS. What about those who may not test positive for > Lymes? Would that mean they are dealing with something altogether > different and their CFS symptoms have developed from a different source? > > Sorry if this sounds elementary. I just recently discovered this site > and I see that most here are much more facile with the terms and > certainly have a greater understanding of the whole picture than I. > > Ballady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 " pjeanneus " wrote: > > , > And we don't know what the combos look like. Maybe the kids in Truckee all got hit with an airborne mycoplasma infection on top of already having something else like borrelia. Then you add on toxic mold in that building. It is a confusing mess. > > But I wouldn't want to minimize the risk of tick borne infections. > Heck, they used to tell us in South Carolina if your kid got Rocky Mt. Spotted Fever and lived to tell about it you were home free. Now we know that there is a chronic form of rickettsia. None of this is simple as you know. > a a, Yes, this is the craziest darn thing and I would never minimize the TBD's. It's just that " the mycotoxin connection " gets so little attention when it appears to be so huge. You may recall that I knew about " Terminal B " at Reno Tahoe airport because I could feel " it " there. Well, " Lymies " flying in for treatment at the Century clinic would get off the plane and drop in their tracks. This is so dang consistent that it is unbelievable that nobody but Dr Shoemaker is interested. I still wonder why nobody takes me up on my challenge to come and do " The Incline Village Mold Tour " . I think that you of all people know that this is no joke. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 " " wrote: > I agree with Jill. I would advise skepticism with this. IMO. Taking doxy > alone is likely to be a waste of time for most people. > ----------------------------- Those patients of the " Doxy Doc " are members of the " cavitations club " . They all have jaw parts missing. Doxy Doc says that his pts improve on doxy alone - and " that's all I need to know. Keeps a " CWD organisms/Mattman " on his desk. Pissed me off when I wanted to talk to him about MP and he just instantly blew me off. " Marshall? Never heard of him. Who do you think you are! " After being a charter member of the " bug of the month club " for all these years, I'm a burnin, burnin, hunk of skepticism. - " " (not a damned sveringer) Quote Link to comment Share on other sites More sharing options...
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