Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 Nicholson's Lab is usually deemed the best for Mycoplasma PCR testing * according to popular CFIDS belief *. Reason is simple: Nicholson is a research scientist and developed these tests. And yes, they are unreliable -- frequently people had 3 or more PCRs before any positive results came back. If Jadin is correct, then the reserves/focii are NOT in the blood stream but buried deep inside tissue, organs and bone marrow: so a positive PCR on blood only indicates an " abundant " infection that flows over into the blood... One of the Mycoplasma registry folks reported NEGATIVE PCR on blood(despite repeated tests) but positive results on bone marrow... illustrating the point clearly. M Lassesen, M.S. ex " Dr.Gui (MSDN) " , " Dr. VB " cv: http://www.folkarts.com/kenl/ KenL@... Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 ----- Original Message ----- From: Adam Fields Hi All, Does anyone know about mycoplasma testing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 Hi Adam, Immunosciences lab in Beverly Hills-CA does the Mycoplasma test. Al mycoplasma testing? > > > Hi All, > > Does anyone know about mycoplasma testing? > > I sent the message below to a cfs group relating to this topic without an > answer. > > I live in the UK and am looking into polymerase chain reaction testing > for mycoplasma and viruses. > > I take it that not all tests for mycoplasma are reliable. > > Which labs can reliably test for mycoplasma? and what is it that makes their > testing process more reliable than other labs? > > Does anyone know? If so your info on this matter would be much appreciated. > > Thanks > Adam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 Thanks Ken & Al for your replies. From what Ken says there does not appear to be a reliable mycoplasma test. hmm. I was looking at a natural treatment to combat mycoplasm, i.e Olive Leaf Extract, but to buy the good stuff, i.e East Park, even for two months would cost $170 so I started looking at Labs i.e " International molecular diagnostics.inc " who charge $250. Thinking that if I could get mycoplasma diagnosed I would have the support of doctors in the UK for anti-biotics. So if there is no reliable test I think I will need to find a natural remedy I can take on a long term basis that won't cost the earth. Any tips as I am kind of flummusked !?!??! now. Thanks again for the info Adam > > Nicholson's Lab is usually deemed the best for Mycoplasma PCR testing * according to popular CFIDS belief *. Reason is simple: Nicholson is a research scientist and developed these tests. And yes, they are unreliable -- frequently people had 3 or more PCRs before any positive results came back. If Jadin is correct, then the reserves/focii are NOT in the blood stream but buried deep inside tissue, organs and bone marrow: so a positive PCR on blood only indicates an " abundant " infection that flows over into the blood... > > One of the Mycoplasma registry folks reported NEGATIVE PCR on blood(despite repeated tests) but positive results on bone marrow... illustrating the point clearly. > > M Lassesen, M.S. > ex " Dr.Gui (MSDN) " , " Dr. VB " > cv: http://www.folkarts.com/kenl/ KenL@... > Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 > ----- Original Message ----- > From: Adam Fields > > > Hi All, > > Does anyone know about mycoplasma testing? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 " Thinking that if I could get mycoplasma diagnosed I would have the support of doctors in the UK for anti-biotics " - although this may happen, my observations on various lists is that this is not the most common response -- often the MD will go for 2-4 weeks of antibiotics and that is it... the main issue (in my opinion) is getting an MD to accept that long term antibiotics (or even antibiotic rotation) is warranted -- and for that there is no " conventional illness " where this is 'standard'. I know that many people in the US report going thru 10-12 MD's before finding one that will prescribe antibiotics for long time use. For our own family MD [not a CFIDS/ME specialist], my careful daily written observations (given to her each appointment) plus Nicholson's papers - got her willing to try 4 weeks of antibiotics. The observations of these 4 weeks convinced her sufficiently to try another 4 weeks.... my recovery has convinced her sufficiently to be willing to try all of her patients on antibiotics, and similarly, getting ISAC panels.... Can you find any cheaper source of Olive Leaf extract? Also, you can realize significant gain from just 2-3 capsules/day at the start (and if you do any more, you may be herxing bad...) so a single bottle may do for a month .... thus the cost drops to $20-$30/month (ordering from needs at $18/bottle) To just remind folks about the " odds " (taking every researcher at " face value " ) 10% | 90% No Coagulation | Coagulation | 70% with Active Infection | 30% with NO active infection Chemical or | % - bacteria...? 70% ? | - inability to dissolve Fibrin, undo past coagulation Other causes | % - viral .... ? 30% ? | 5% has genetic factor ---------------------------------------- ---------------------------------------- --------------------- Have you approached your Family MD (or shopped around for an MD) with the line " I have ME and there are two treatments reported from the US that have very good results - I know that the treatments are EXPERIMENTAL but also low risk. I am looking for an MD that is willing to do any required tests and be willing to help me try these treatments. I know that they are EXPERIMENTAL and understand the risks and issues involved..... " If the question arise " What are these treatments? " " Identical treatment that is often used for ACNE, long term antibiotics such as doxcycline , the second is very low dosages of heparin if coagulation testings find abnormal coagulation -- in the US, 90% of CFIDS patients are finding abnormal coagulation. " M Lassesen, M.S. ex " Dr.Gui (MSDN) " , " Dr. VB " cv: http://www.folkarts.com/kenl/ KenL@... Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 Re: mycoplasma testing? My Groups | Main Page | Start a new group! Thanks Ken & Al for your replies. >From what Ken says there does not appear to be a reliable mycoplasma test. hmm. I was looking at a natural treatment to combat mycoplasm, i.e Olive Leaf Extract, but to buy the good stuff, i.e East Park, even for two months would cost $170 so I started looking at Labs i.e " International molecular diagnostics.inc " who charge $250. Thinking that if I could get mycoplasma diagnosed I would have the support of doctors in the UK for anti-biotics. Any tips as I am kind of flummusked !?!??! now. Thanks again for the info Adam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Hi and thanks Ken for your detailed reply regarding mycoplasma testing. I was interested in the price you mentioned for Needs Olive Leaf Extract: > a single bottle may do for a month .... > thus the cost drops to $20-$30/month > (ordering from needs at $18/bottle) The prices I have seen from Needs are $28.98 for 60caps of East Parks Research OLE. From earlier posts from others in the group anything other than the East Park OLE are a waste of time. That's why I came up with the figure of $173.88 for 2months trial supply i.e $28.98 for 60caps (6caps a day) . Which was the OLE you were looking at? As for the mycoplasma testing I am put off about that particularly when reading about how this opportunistic infection can also be found amongst groups like rhumatoid artheritus who don't necessarily have chronic fatigue. So if I did have the test and it was negative it wouldn't make any difference to me. If such an inconclusive test was posative well it would be a help with my SS benefits as well as giving a name, however reliable, to my CFS. I think for anyone having this test I would encourage them to check beforeahand with their doctor to see if their doctor would first of all accept the test results from whatever lab as being reliable and were prepared to go ahead with a full years course of antibiotics if the labs results proved posative for mycoplasma. As I have had IBS in the past due to gut parasites I think a good OLE product can only do good as I am sure it will be used to fight some opportunistic bug. Thanks again Adam > > " Thinking that if I could get mycoplasma > diagnosed I would have the support of > doctors in the UK for anti-biotics " > - although this may happen, my > observations on various lists is that > this is not the most common response -- > often the MD will go for 2-4 weeks of > antibiotics and that is it... the main > issue (in my opinion) is getting an MD > to accept that long term antibiotics (or > even antibiotic rotation) is > warranted -- and for that there is no > " conventional illness " where this is > 'standard'. I know that many people in > the US report going thru 10-12 MD's > before finding one that will prescribe > antibiotics for long time use. > For our own family MD [not a > CFIDS/ME specialist], my careful daily > written observations (given to her each > appointment) plus Nicholson's papers - > got her willing to try 4 weeks of > antibiotics. The observations of these 4 > weeks convinced her sufficiently to try > another 4 weeks.... my recovery has > convinced her sufficiently to be > willing to try all of her patients on > antibiotics, and similarly, getting ISAC > panels.... > > Can you find any cheaper source of Olive > Leaf extract? Also, you can realize > significant gain from just 2-3 > capsules/day at the start (and if you do > any more, you may be herxing bad...) so > a single bottle may do for a month .... > thus the cost drops to $20-$30/month > (ordering from needs at $18/bottle) > > To just remind folks about the " odds " > (taking every researcher at " face > value " ) > > 10% | > 90% > No Coagulation | > Coagulation > | > 70% with Active Infection | 30% with > NO active infection > Chemical or | % - > bacteria...? 70% ? | - > inability to dissolve Fibrin, undo past > coagulation > Other causes | % - > viral .... ? 30% ? | 5% has > genetic factor > ---------------------------------------- > ---------------------------------------- > --------------------- > > Have you approached your Family MD (or > shopped around for an MD) with the line > " I have ME and there are two treatments > reported from the US that have very good > results - I > know that the treatments are > EXPERIMENTAL but also low risk. I am > looking for an MD > that is willing to do any required tests > and be willing to help me try these > treatments. I know that they > are EXPERIMENTAL and understand the > risks and issues involved..... " > > If the question arise " What are these > treatments? " " Identical treatment that > is often used for ACNE, > long term antibiotics such as doxcycline > , the second is very low dosages of > heparin if coagulation > testings find abnormal coagulation -- in > the US, 90% of CFIDS patients are > finding abnormal coagulation. " > > > M Lassesen, M.S. > ex " Dr.Gui (MSDN) " , " Dr. VB " > cv: http://www.folkarts.com/kenl/ > KenL@... > Phone: 360 297.4717 Cell: 360 509.8970 > Fax 520 832.6836 > Re: > mycoplasma testing? > > > > > My Groups | Main Page > | Start a new group! > > > Thanks Ken & Al for your replies. > > >From what Ken says there does not > appear to be a reliable mycoplasma test. > hmm. > > I was looking at a natural treatment to > combat mycoplasm, i.e Olive Leaf > Extract, but to buy the good stuff, i.e > East Park, even for two months would > cost $170 so I started looking at Labs > i.e " International molecular > diagnostics.inc " who charge $250. > Thinking that if I could get mycoplasma > diagnosed I would have the support of > doctors in the UK for anti-biotics. > > > Any tips as I am kind of flummusked > !?!??! now. > > Thanks again for the info > Adam > > > 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 September 5, 2000 Report Share Posted September 5, 2000 At http://www.needs.com/ Product ID : EPR-5000 Category Manufacturer Vitamins East Parks Reasearch Olive Leaf 500mg (D-Lenolate) The MSRP is: $29.98 Size 60 cap Price: $17.99 Their Price is $17.99.... --------------------------------------- Other brands work - but you need to factor the concentration of the Active Factor (thus East Park becomes the cheapest..) M Lassesen, M.S. ex " Dr.Gui (MSDN) " , " Dr. VB " cv: http://www.folkarts.com/kenl/ KenL@... Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 ----- Original Message ----- From: Adam Fields That's why I came up with the figure of $173.88 for 2months trial supply i.e $28.98 for 60caps (6caps a day) . Which was the OLE you were looking at? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Thanks a lot for your help Ken. Adam > At http://www.needs.com/ > > > Product ID : EPR-5000 Category Manufacturer > Vitamins East Parks Reasearch > Olive Leaf 500mg (D-Lenolate) The MSRP is: $29.98 Size 60 cap > > > > Price: $17.99 > > > > Their Price is $17.99.... > --------------------------------------- > Other brands work - but you need to factor the concentration of the Active Factor (thus East Park becomes the cheapest..) > > > M Lassesen, M.S. > ex " Dr.Gui (MSDN) " , " Dr. VB " > cv: http://www.folkarts.com/kenl/ KenL@... > Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 > ----- Original Message ----- > From: Adam Fields > That's why I came up with the > figure of > $173.88 for 2months trial supply i.e $28.98 for 60caps (6caps a day) . Which > was the OLE you were looking at? > > > > > Quote Link to comment Share on other sites More sharing options...
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