Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Not me.. But if I were you I would be very happy! At least you don't have these bugs for now! There are others to search for though, and your MD is right to search for them. Also test for Lyme. I tested positive for all of those bugs. Carol In NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Will, I can't comment on the viruses but I wonder why you were not tested for clamydia pneumoniae. Also the mcyoplasma is often a false negativve. This is almost always true if you have been on antibiotics. It is best to be off antibiotics for 3 months before having a blood PCR for mycoplasma. Meanwhile, you know me, I would have to ask if you were ever tested for borrelia at IgeneX. With at least two cfs doctors now claiming 90% and 95% of their cfs patients testing positive for borrelia that would be top on my list for testing. Hope this helps, even if it is not good news. a Carnes > > I few weeks ago my doctor drew a blood sample from me and sent it to > Medical Diagnostic lab in Hamilton, NJ. He ordered the following tests: > > 1. Chlamydia subtype by Qualitative PCR (pneumoniae, trachomatis) > > 2. Herpes subtype (HSV-1, HSV-2) by Real-Time PCR > > 3. Epstein-Barr virus (EBV) by Qualitative PCR > > 4. Cytomegalovirus (CMV) by Qualitative PCR > > 5. Human herpesvirus-6 (HHV-6) Variants A & B by Real-Time PCR > > 6. Mycoplasma general by Qualitative PCR > > All six tests came back negative. > > My doctor said that the negative results are not conclusive, and that > he still suspects an intracellular infection, and so he wants to > begin an experimental treatment for " stealth " infections, along the > lines of the treatments advocated by Garth L. Nicolson, Ph.D. > > I'm wondering if any of the subscribers to this group have had similar > negative test results but have gone ahead anyway to treat " stealth " > infections. > > If so, did any of you get better? > > Will in Seattle > a.k.a. " Sleepless " > > P.S. > > I had the ISAC panel done at HEMEX last November and got these results: > > FIBRIN MONOMER SCREEN weak pos H > FIBRINOGEN ACTIVITY 286 > FRAGMENT 1+2 1.3 > QUANTITATIVE D-DIMER <75 > SOLUBLE FIBRIN MONOMER ***** > T/AT COMPLEXES 5.9 > > I'd be grateful for some help interpreting the results. The doctor > who ordered the test said I'm at risk of a stroke and wants to start > me on heparin. She said she believes the test results indicate the > presence of an infection. > > *****They were unable to perform the SFM test due to reagent > unavailability. Every time I've called them since then they say they > have not been able to find a reliable source for the reagent > > --Sleepless > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Hi Will >>>The doctor who ordered the test said I'm at risk of a stroke and wants to start me on heparin.<<<<< You might want to look into Boluoke (Lumbrokinase). There is impressive human clinical data on it, from China Medical Society, where it's been used for a long time. It's been used in place of or in addition to Heparin and Coumadin. It: Hydrolyzes Fibrin Activates Plasminogen Degrades Fibrinogen Inhibits Platelet Aggregation I have taken it for over a year with no problems. I keep forgetting to test Fibrin for changes, but I suspect it might be good. When looking for the studies, I had to go several places to see them. You could also call the company...RNA Biochemical at canadaRNA.com There are also other websites and distributors that are very helpful. If you decide to order, I can look for the best one I've found, price-wise. (widely varies). ALot of us here with " original CFS " are at risk for stroke, heart attack or heart failure. But there are things that can be done about it that various people are learning. It's an important topic here, and I'm glad you've had it called to your attention. BW, Katrina P.S. I do have antibodies to most of the pathogens you named, but don't think I've been tested for current, active forms, yet there are other indications of ongoing infection. There are quite alot of other pathogens being looked at in CFS, too, and a variety of approaches for addressing viruses, other pathogens, immune system, and circulatory issues. This is where it makes it interesting to follow the work of the long time CFS Specialists and their patients, in addition to those newer to the scene. > > I few weeks ago my doctor drew a blood sample from me and sent it to > Medical Diagnostic lab in Hamilton, NJ. He ordered the following tests: > > 1. Chlamydia subtype by Qualitative PCR (pneumoniae, trachomatis) > > 2. Herpes subtype (HSV-1, HSV-2) by Real-Time PCR > > 3. Epstein-Barr virus (EBV) by Qualitative PCR > > 4. Cytomegalovirus (CMV) by Qualitative PCR > > 5. Human herpesvirus-6 (HHV-6) Variants A & B by Real-Time PCR > > 6. Mycoplasma general by Qualitative PCR > > All six tests came back negative. > > My doctor said that the negative results are not conclusive, and that > he still suspects an intracellular infection, and so he wants to > begin an experimental treatment for " stealth " infections, along the > lines of the treatments advocated by Garth L. Nicolson, Ph.D. > > I'm wondering if any of the subscribers to this group have had similar > negative test results but have gone ahead anyway to treat " stealth " > infections. > > If so, did any of you get better? > > Will in Seattle > a.k.a. " Sleepless " > > P.S. > > I had the ISAC panel done at HEMEX last November and got these results: > > FIBRIN MONOMER SCREEN weak pos H > FIBRINOGEN ACTIVITY 286 > FRAGMENT 1+2 1.3 > QUANTITATIVE D-DIMER <75 > SOLUBLE FIBRIN MONOMER ***** > T/AT COMPLEXES 5.9 > > I'd be grateful for some help interpreting the results. The doctor > who ordered the test said I'm at risk of a stroke and wants to start > me on heparin. She said she believes the test results indicate the > presence of an infection. > > *****They were unable to perform the SFM test due to reagent > unavailability. Every time I've called them since then they say they > have not been able to find a reliable source for the reagent > > --Sleepless > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Hi Will, I have worked with two top-flight Immunologists and have been tested for every one of these bugs. And all were negative. But you missed one, Borrelia burgdorferi. That was an additional test I had twice, once by Western Blot (one band positive, I believe it was 41), and then by the experimental and controversial Bowen (positive). The idea that we have a stealth pathogen is in my opinion grasping at straws by people who want to believe that we have a primary infection. I also believe that the primary reason that medical science wants us to have an infection is that that is what they know how to treat. If they would take an objective and holistic look and stop trying to dissect the situation (which they are not capable of doing), they might see the obvious patterns, things like what Rich is uncovering, what observes, what Ken has found, etc. --Kurt PCR tests for 6 pathogens came back negative I few weeks ago my doctor drew a blood sample from me and sent it to Medical Diagnostic lab in Hamilton, NJ. He ordered the following tests: 1. Chlamydia subtype by Qualitative PCR (pneumoniae, trachomatis) 2. Herpes subtype (HSV-1, HSV-2) by Real-Time PCR 3. Epstein-Barr virus (EBV) by Qualitative PCR 4. Cytomegalovirus (CMV) by Qualitative PCR 5. Human herpesvirus-6 (HHV-6) Variants A & B by Real-Time PCR 6. Mycoplasma general by Qualitative PCR All six tests came back negative. My doctor said that the negative results are not conclusive, and that he still suspects an intracellular infection, and so he wants to begin an experimental treatment for " stealth " infections, along the lines of the treatments advocated by Garth L. Nicolson, Ph.D. I'm wondering if any of the subscribers to this group have had similar negative test results but have gone ahead anyway to treat " stealth " infections. If so, did any of you get better? Will in Seattle a.k.a. " Sleepless " P.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 yeah, if all you have is a screwdriver everything begins to look like a screw. Adrienne PCR tests for 6 pathogens came back negative I few weeks ago my doctor drew a blood sample from me and sent it to Medical Diagnostic lab in Hamilton, NJ. He ordered the following tests: 1. Chlamydia subtype by Qualitative PCR (pneumoniae, trachomatis) 2. Herpes subtype (HSV-1, HSV-2) by Real-Time PCR 3. Epstein-Barr virus (EBV) by Qualitative PCR 4. Cytomegalovirus (CMV) by Qualitative PCR 5. Human herpesvirus-6 (HHV-6) Variants A & B by Real-Time PCR 6. Mycoplasma general by Qualitative PCR All six tests came back negative. My doctor said that the negative results are not conclusive, and that he still suspects an intracellular infection, and so he wants to begin an experimental treatment for " stealth " infections, along the lines of the treatments advocated by Garth L. Nicolson, Ph.D. I'm wondering if any of the subscribers to this group have had similar negative test results but have gone ahead anyway to treat " stealth " infections. If so, did any of you get better? Will in Seattle a.k.a. " Sleepless " P.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Regarding 90-95% of CFS patients testing positive for Lyme, the answer may be found on the IgeneX website itself: http://www.igenex.com/lymeset2.htm " Patients with other spirochetal disease and/or who test positive for rheumatoid factor or Epstein Barr virus may have cross-reacting antibodies. A positive response in this, as in any antibody assay, indicates sensitization, not necessarily active disease. " Since most CFS patients test positive for EBV, then they would test positive for Lyme. I have asked my doctor repeatedly about this and he always claims he forgot to call IgeneX. Maybe someone else will have better luck :-) Cheers, Chris > > Meanwhile, you know me, I would have to ask if you were ever tested > for borrelia at IgeneX. With at least two cfs doctors now claiming > 90% and 95% of their cfs patients testing positive for borrelia that > would be top on my list for testing. > > Hope this helps, even if it is not good news. > > a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Phew! Thanks for that authoritative clarification!! Less clear about was IS going on, way more so about what is not. Adrienne Re: PCR tests for 6 pathogens came back negative Regarding 90-95% of CFS patients testing positive for Lyme, the answer may be found on the IgeneX website itself: http://www.igenex.com/lymeset2.htm " Patients with other spirochetal disease and/or who test positive for rheumatoid factor or Epstein Barr virus may have cross-reacting antibodies. A positive response in this, as in any antibody assay, indicates sensitization, not necessarily active disease. " Since most CFS patients test positive for EBV, then they would test positive for Lyme. I have asked my doctor repeatedly about this and he always claims he forgot to call IgeneX. Maybe someone else will have better luck :-) Cheers, Chris > > Meanwhile, you know me, I would have to ask if you were ever tested > for borrelia at IgeneX. With at least two cfs doctors now claiming > 90% and 95% of their cfs patients testing positive for borrelia that > would be top on my list for testing. > > Hope this helps, even if it is not good news. > > a Carnes 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 August 15, 2006 Report Share Posted August 15, 2006 Are you saying, then, that those with CFS who test positive for Lyme are really a false positive? Ballady > > Regarding 90-95% of CFS patients testing positive for Lyme, the answer > may be found on the IgeneX website itself: > > http://www.igenex.com/lymeset2.htm > > " Patients with other spirochetal disease and/or who test positive for > rheumatoid factor or Epstein Barr virus may have cross-reacting > antibodies. A positive response in this, as in any antibody assay, > indicates sensitization, not necessarily active disease. " > > Since most CFS patients test positive for EBV, then they would test > positive for Lyme. I have asked my doctor repeatedly about this and > he always claims he forgot to call IgeneX. Maybe someone else will > have better luck :-) > > Cheers, > > Chris > > > > Meanwhile, you know me, I would have to ask if you were ever tested > > for borrelia at IgeneX. With at least two cfs doctors now claiming > > 90% and 95% of their cfs patients testing positive for borrelia that > > would be top on my list for testing. > > > > Hope this helps, even if it is not good news. > > > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Thank You! This is a rather CRUCIAL DETAIL!, and from the lab itself I hope all of the others around the globe who pronounce this " 90-95% PWCs test positive for Lyme " will bother to include this with their statements. >>>Since most CFS patients test positive for EBV, then they would test positive for Lyme.<<<< Actually the major majority of the Human race has EBV, and of course many with Rheumatoid factor, so what would that mean about accuracy of Lyme testing, in which nearly everyone tests positive? The EBV difference in PWCs is that for many, the titres are very high. THat was why in the 80s, it was called Chronic EBV, but this was de-bunked. For those with high EBV titres, it is believed to be opportunistic, not causal. Then there is also the fact that with high antibodies to any pathogen, this does not mean active infection. Katrina > > Regarding 90-95% of CFS patients testing positive for Lyme, the answer > may be found on the IgeneX website itself: > > http://www.igenex.com/lymeset2.htm > > " Patients with other spirochetal disease and/or who test positive for > rheumatoid factor or Epstein Barr virus may have cross-reacting > antibodies. A positive response in this, as in any antibody assay, > indicates sensitization, not necessarily active disease. " > > Since most CFS patients test positive for EBV, then they would test > positive for Lyme. I have asked my doctor repeatedly about this and > he always claims he forgot to call IgeneX. Maybe someone else will > have better luck :-) > > Cheers, > > Chris > > > > Meanwhile, you know me, I would have to ask if you were ever tested > > for borrelia at IgeneX. With at least two cfs doctors now claiming > > 90% and 95% of their cfs patients testing positive for borrelia that > > would be top on my list for testing. > > > > Hope this helps, even if it is not good news. > > > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 No, what that is saying is it MAY be a false positive. 'Course most people test positive for EB. The statement is not clear whether it would be active Eb or whether that makes no difference. A Re: PCR tests for 6 pathogens came back negative Are you saying, then, that those with CFS who test positive for Lyme are really a false positive? Ballady > > Regarding 90-95% of CFS patients testing positive for Lyme, the answer > may be found on the IgeneX website itself: > > http://www.igenex.com/lymeset2.htm > > " Patients with other spirochetal disease and/or who test positive for > rheumatoid factor or Epstein Barr virus may have cross-reacting > antibodies. A positive response in this, as in any antibody assay, > indicates sensitization, not necessarily active disease. " > > Since most CFS patients test positive for EBV, then they would test > positive for Lyme. I have asked my doctor repeatedly about this and > he always claims he forgot to call IgeneX. Maybe someone else will > have better luck :-) > > Cheers, > > Chris > > > > Meanwhile, you know me, I would have to ask if you were ever tested > > for borrelia at IgeneX. With at least two cfs doctors now claiming > > 90% and 95% of their cfs patients testing positive for borrelia that > > would be top on my list for testing. > > > > Hope this helps, even if it is not good news. > > > > a Carnes > 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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