Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Dear Phil, If you mean the Western Blot, that seems to be the first step in diagnosing, the results will show " bands " that came out positive. I am not sure what all of them mean, but I have a copy of my test and someone here does have a reference to what they mean. I think it takes 5 of certain bands to be considered positive per CDC but I had 4 do my doc considers me positive. After that, he suggested a few urine tests by IGENEX that he says are much more accurate if you are on antibiotics when you collect the samples, as I guess it dumps the dead spirochetes in the urine. If you do go this far, I did, IGENEX will send you the stuff you need an directions on how to collect and ship the specimens, you can do it at home. If you come out negative on the Western Blot, you may be treated if you have clinical symptoms, especially if you have the bullseye rash, this depends on you doctor, but I would also suggest having a CFS doctor who treats the CFS and not just the symptoms, this is hard to find! Best of luck on your Lyme tests, hope they help you get the treatment you need. Hugs from a Light-HouseKeeper finally in Pennsylvania (Anyone can clean the house, only you can catch up on your rest,) Michele E. Townsend, FMS/90,ME/CFS/94,LD/??(Dx01),SSDI/95 mailto:michtown@... and homepages: http://msnhomepages.talkcity.com/SupportSt/michtown/default.htm With a dream to become an Inn-House-Keeper! Join at: TownsendVillage or by sending a blank email to TownsendVillage-subscribe ----- Original Message ----- From: " Phil Comer " Sent: Wednesday, June 06, 2001 1:03 PM > Thanks for those of you that responded to my request on a lyme's doctor. > I saw My CFS doctor last week who apparently is an acquaitance of Dr > Bock who I saw referenced in the Alternative Med article. He has ordered > the IGENEX test on me. I was wondering do the results simply come back > positive or negative or is there some sort of range? I have still not > ruled out seeing a LL doctor. I am really hoping this thing comes out > positive;it would certainly be more helpful than the other tests I've > had showing garbage living in me;CBV,HHV6,EBV. > Just how accurate is this test? I guess what I'm asking is if it is > negative what would others recommend? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 > I have had 3 western blots done on me 2 off anti-biotics both poss. one on > anti-biotics neg.. I have my newest test results here and it shows 5poss > bands on one and 2 on another. My question is what is this urine test ya'll > are talking about? The Urine test is LUAT, or Lyme Urine Antigen Test, its done by taking urine from 3 days, combining it and testing. Are you unable to get treatment since you had one neg test? Pepi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 I have had 3 western blots done on me 2 off anti-biotics both poss. one on anti-biotics neg.. I have my newest test results here and it shows 5poss bands on one and 2 on another. My question is what is this urine test ya'll are talking about? Re: [ ] Doctor Referral > Dear Phil, > If you mean the Western Blot, that seems to be the first step in diagnosing, > the results will show " bands " that came out positive. I am not sure what > all of them mean, but I have a copy of my test and someone here does have a > reference to what they mean. I think it takes 5 of certain bands to be > considered positive per CDC but I had 4 do my doc considers me positive. > > After that, he suggested a few urine tests by IGENEX that he says are much > more accurate if you are on antibiotics when you collect the samples, as I > guess it dumps the dead spirochetes in the urine. If you do go this far, I > did, IGENEX will send you the stuff you need an directions on how to collect > and ship the specimens, you can do it at home. > > If you come out negative on the Western Blot, you may be treated if you have > clinical symptoms, especially if you have the bullseye rash, this depends on > you doctor, but I would also suggest having a CFS doctor who treats the CFS > and not just the symptoms, this is hard to find! > > Best of luck on your Lyme tests, hope they help you get the treatment you > need. > Hugs from a Light-HouseKeeper finally in Pennsylvania > (Anyone can clean the house, only you can catch up on your rest,) > Michele E. Townsend, FMS/90,ME/CFS/94,LD/??(Dx01),SSDI/95 > mailto:michtown@... and homepages: > http://msnhomepages.talkcity.com/SupportSt/michtown/default.htm > With a dream to become an Inn-House-Keeper! Join at: > TownsendVillage or by sending > a blank email to TownsendVillage-subscribe > > ----- Original Message ----- > From: " Phil Comer " Sent: Wednesday, June 06, 2001 1:03 PM > > Thanks for those of you that responded to my request on a lyme's doctor. > > I saw My CFS doctor last week who apparently is an acquaitance of Dr > > Bock who I saw referenced in the Alternative Med article. He has ordered > > the IGENEX test on me. I was wondering do the results simply come back > > positive or negative or is there some sort of range? I have still not > > ruled out seeing a LL doctor. I am really hoping this thing comes out > > positive;it would certainly be more helpful than the other tests I've > > had showing garbage living in me;CBV,HHV6,EBV. > > Just how accurate is this test? I guess what I'm asking is if it is > > negative what would others recommend? > > > > Welcome to > > Easy Reference: > Send a blank email message to: > > -Unsubscribe - Unsubscribe from the list > -Digest - Switch your subscription to a digest format > -Normal - Switch your subscription to normal > > Please send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic > > The archives can be accessed at > > The chat room is always open! > /chat > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 I am unable to get proper treatment because I live in Nashville. I have been through several doctors here that say both poss. tests have to be wrong. I was seeing a Dr. in Mo. but at the moment I have been unable to affort to travel.He was sending the orders to another Dr. who has now decided that because I have been on IV's twice and off and on oral the last year I should be cured " if I ever had Lyme " , therefore they will not treat me anymore. S. Re: [ ] Doctor Referral > > > I have had 3 western blots done on me 2 off anti-biotics both poss. one on > > anti-biotics neg.. I have my newest test results here and it shows 5poss > > bands on one and 2 on another. My question is what is this urine test > ya'll > > are talking about? > > > > The Urine test is LUAT, or Lyme Urine Antigen Test, its done by taking urine > from 3 days, combining it and testing. Are you unable to get treatment since > you had one neg test? Pepi > > > Welcome to > > Easy Reference: > Send a blank email message to: > > -Unsubscribe - Unsubscribe from the list > -Digest - Switch your subscription to a digest format > -Normal - Switch your subscription to normal > > Please send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic > > The archives can be accessed at > > The chat room is always open! > /chat > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2001 Report Share Posted June 7, 2001 Sheryl, Have you checked with local support groups in Tennessee for doctor names? Here is a link for you. Good luck, Marta http://www.geocities.com/HotSprings/Spa/6772/tennessee-patients.txt ----- Original Message ----- From: " Sheryl " <slmitch1@...> > I am unable to get proper treatment because I live in Nashville. I have been > through several doctors here that say both poss. tests have to be wrong. I > was seeing a Dr. in Mo. but at the moment I have been unable to affort to > travel.He was sending the orders to another Dr. who has now decided that > because I have been on IV's twice and off and on oral the last year I should > be cured " if I ever had Lyme " , therefore they will not treat me anymore. > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 How interesting. I came out positive also on four bands. How many IGENEX tests did it take for you to show positive? Phil michtown wrote: > Dear Phil, > If you mean the Western Blot, that seems to be the first step in > diagnosing, > the results will show " bands " that came out positive. I am not sure > what > all of them mean, but I have a copy of my test and someone here does > have a > reference to what they mean. I think it takes 5 of certain bands to > be > considered positive per CDC but I had 4 do my doc considers me > positive. > > After that, he suggested a few urine tests by IGENEX that he says are > much > more accurate if you are on antibiotics when you collect the samples, > as I > guess it dumps the dead spirochetes in the urine. If you do go this > far, I > did, IGENEX will send you the stuff you need an directions on how to > collect > and ship the specimens, you can do it at home. > > If you come out negative on the Western Blot, you may be treated if > you have > clinical symptoms, especially if you have the bullseye rash, this > depends on > you doctor, but I would also suggest having a CFS doctor who treats > the CFS > and not just the symptoms, this is hard to find! > > Best of luck on your Lyme tests, hope they help you get the treatment > you > need. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 It's the PCR test by IGENEX. Phil Sheryl wrote: > I have had 3 western blots done on me 2 off anti-biotics both poss. > one on > anti-biotics neg.. I have my newest test results here and it shows > 5poss > bands on one and 2 on another. My question is what is this urine test > ya'll > are talking about? > ----- Original Message ----- > From: " michtown " <michtown@...> > < > > S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 I think there was someone on here that was seeking information on a LLMD in the Houston area. I inadvertently deleted your message (or I think I did...if I did send you the info, you're welcome Anyway, just email me again if so....I think it may have been aboud Social Security disability also. Man, I'm fading fast in the brain department...got to get back on the abx IV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Phil, is this like a western blot? I have never heard of it. That's not saying much here, sometimes I think I know more about this disease than the doctors. Sheryl Re: [ ] Doctor Referral > It's the PCR test by IGENEX. > > Phil > > Sheryl wrote: > > > I have had 3 western blots done on me 2 off anti-biotics both poss. > > one on > > anti-biotics neg.. I have my newest test results here and it shows > > 5poss > > bands on one and 2 on another. My question is what is this urine test > > ya'll > > are talking about? > > ----- Original Message ----- > > From: " michtown " <michtown@...> > > < > > > S > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Phil, Is this like a Wester Blot?I have never heard of it. What is it suppose to do? Sheryl Re: [ ] Doctor Referral > It's the PCR test by IGENEX. > > Phil > > Sheryl wrote: > > > I have had 3 western blots done on me 2 off anti-biotics both poss. > > one on > > anti-biotics neg.. I have my newest test results here and it shows > > 5poss > > bands on one and 2 on another. My question is what is this urine test > > ya'll > > are talking about? > > ----- Original Message ----- > > From: " michtown " <michtown@...> > > < > > > S > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Dear Phil, Just the one, but then I seem to have had it over 10 years, I have been sick for 10 years and on SSDI and LTD for 6 years. It just took the right doctor to run the right test. I doubt that the tests they had 10 years ago would have been accurate. That seems to be a real problem, the accuracy of the tests. Hugs, Michele ----- Original Message ----- From: " Phil Comer " Sent: Saturday, June 09, 2001 3:39 PM > How interesting. I came out positive also on four bands. How many IGENEX > tests did it take for you to show positive? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Sherryl My mind is so off I'm not sure I responded. I don't know much about the IGENEX except it is PCR technology and is more accurate than a Western blot. Phil Sheryl wrote: > Phil, > is this like a western blot? I have never heard of it. That's not > saying > much here, sometimes I think I know more about this disease than the > doctors. > Sheryl > ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 thanks Pjil, I understand the brain dead syndrome. Sheryl Re: [ ] Doctor Referral > Sherryl > > My mind is so off I'm not sure I responded. I don't know much about the > IGENEX except it is PCR technology and is more accurate than a Western > blot. > > Phil > > Sheryl wrote: > > > Phil, > > is this like a western blot? I have never heard of it. That's not > > saying > > much here, sometimes I think I know more about this disease than the > > doctors. > > Sheryl > > ----- Original Message ----- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Call Dr. Whitman, at the Summit Medical Group, a rheumatologist and AP dr., He is in Berkeley Hts, NJ, which is near New York. 908-277-8640. I go to him and so do others on this list. A On Mar 1, 2008, at 11:42 AM, yaniv_naced wrote: > Can anybody point me in the right direction for an AP doctor around > Westchester NY or Southern CT? Looking for low dose Minocin therapy. > > It would be much appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 I would defijnitely recommend Dr. Whitman. He is the first rheumatologist that I have gone to that is open to alternative methods and is definitely knowledgable in the antibiotic therapy. It is worth the hour and a half drive to see him. Roni Re: rheumatic Doctor referral rheumatic > > > > > > > > > > > > > > > > > > Call Dr. Whitman, at the Summit Medical Group, a rheumatologist and > > AP dr., He is in Berkeley Hts, NJ, which is near New York. > > 908-277-8640. I go to him and so do others on this list. A > > On Mar 1, 2008, at 11:42 AM, yaniv_naced wrote: > > > > > Can anybody point me in the right direction for an AP doctor around > > > Westchester NY or Southern CT? Looking for low dose Minocin therapy. > > > > > > It would be much appreciated. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Re Dr. Whitman...we travel about 12 hrs to see him and I have seen several of the AP physicians. I adore Dr. Whitman...he has helped me sooo much and has absolutely saved my life. Debbie in Cincinnati Re: rheumatic Doctor referral rheumatic > > > > > > > > > > > > > > > > > > Call Dr. Whitman, at the Summit Medical Group, a rheumatologist and > > AP dr., He is in Berkeley Hts, NJ, which is near New York. > > 908-277-8640. I go to him and so do others on this list. A > > On Mar 1, 2008, at 11:42 AM, yaniv_naced wrote: > > > > > Can anybody point me in the right direction for an AP doctor around > > > Westchester NY or Southern CT? Looking for low dose Minocin therapy. > > > > > > It would be much appreciated. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 My goodness Debbie! 12 hours! I'll think of you the next time I am on the road to see Dr. Whitman! Roni Re: rheumatic Doctor referral > > rheumatic > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Call Dr. Whitman, at the Summit Medical Group, a rheumatologist and > > > > > > AP dr., He is in Berkeley Hts, NJ, which is near New York. > > > > > > 908-277-8640. I go to him and so do others on this list. A > > > > > > On Mar 1, 2008, at 11:42 AM, yaniv_naced wrote: > > > > > > > > > > > > > Can anybody point me in the right direction for an AP doctor around > > > > > > > Westchester NY or Southern CT? Looking for low dose Minocin therapy. > > > > > > > > > > > > > > It would be much appreciated. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Roni, Yes, its a long way there and back...but have been seeing him for about 8 yrs and he is sooo worth it... Next time you see him tell him Debbie Gibson says hello! I have my appt to see him this year in July! God willing. Debbie Re: rheumatic Doctor referral > > rheumatic > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Call Dr. Whitman, at the Summit Medical Group, a rheumatologist and > > > > > > AP dr., He is in Berkeley Hts, NJ, which is near New York. > > > > > > 908-277-8640. I go to him and so do others on this list. A > > > > > > On Mar 1, 2008, at 11:42 AM, yaniv_naced wrote: > > > > > > > > > > > > > Can anybody point me in the right direction for an AP doctor around > > > > > > > Westchester NY or Southern CT? Looking for low dose Minocin therapy. > > > > > > > > > > > > > > It would be much appreciated. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Hi -I'm from Westchester County-north-Mohegan Lake (part of Yorktown Heights). I've been going to Dr Whitman in NJ with another person from Westchester County. It takes us about 75-90 mins. I'm reconsidering traveling to Dr Whitman since I've gone back to work now and also have my hands full with caring for my elderly parents. I'd also be interested in knowing if there is someone closer who does the AP, although I'd be surprised if there was. Please feel free to contact me if you want further info. Carol E from NY From: rheumatic [mailto:rheumatic ] On Behalf Of yaniv_naced Sent: Saturday, March 01, 2008 11:43 AM rheumatic Subject: rheumatic Doctor referral Can anybody point me in the right direction for an AP doctor around Westchester NY or Southern CT? Looking for low dose Minocin therapy. It would be much appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 I was diagnosed with CD last week and need a doctor to oversee my case, any recommendations for a great physician on the SF Peninsulas or in San Francisco? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 it depends on where in pa she lives... i have a doc in nj that really tries to fit people in that need it. contact me offline if nj is an option. Begley - Temporary Placement Manager From: Sara <srobinson@...> Subject: Re: [ ] doctor referral Date: Monday, June 22, 2009, 4:47 PM Ask this list. We often send people referrals (off-list, because most Lyme lists have a policy of never naming doctors in posts). And a lot of LLMDs don't put themselves on the LDA list for the same defensive reasons -- it's like sticking a target on your forehead. Does anybody here know a doc in PA that can see and her kid in the next couple weeks? Sara Quote Link to comment Share on other sites More sharing options...
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