Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Mayo is so bad for Lymies, I only know of the one here in TX , but I could be sure that they are all like this. We have a Senator that was told he had Lymphoma, he went through either Chemo , Radiation or both , lost both Shoulders and had a major heart attack because of it all. He never had cancer, he had Lyme. That is what instigated the Texas Senate Hearings into Lyme Disease. If you have got to go to one of these clinics, then go to the link below and print it out to take with you, it prints to about 27 pages and is invaluable. Take care, http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/ 9c1ac876bb7897f5852568ec0056eb02?OpenDocument also, if you have some odd symptoms, that maybe you think arent related to Lyme, go to www.lymenet.org and search for those symptoms in their 'medical abstracts'. If you find anything print that out also. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 If 99% of American MDs are not Lyme literate, it makes sense that, unless a Lyme literate person tells says otherwise, you should avoid Mayo and Cleveland. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 I haven't heard the best news about the Mayo clinic. however, that was a few years ago when one of our Tx senators was diagnosed with the wrong diagnoses and later found to have lyme...I heard he sued Mayo but don't know the details. Don't know anything about the Cleveland clinic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Dear Jerilyn, The only knowledge I have about Mayo is not a good one. Our Texas Senator Chris is a champion for Lyme, and headed a successful task force for Lyme legislation in Texas a couple of years ago. He was hospitalized for an extended period at Mayo several years ago, and nearly died there. It wasn't until later, when his son was diagnosed by our LLMD here in Texas that Sen. was also found to have Lyme. His story is fairly well know, and he doesn't speak well of Mayo. That's about all the info I have, for what it's worth. Love ya, Rose From: " Jerilynn " <lymieinin@...> Hi, Quick note to ask about these two clinics and how equipped for Lyme they are. Does anyone know if the Cleveland Clinic is dealing with Lyme disease and are they good for lymies to go to. Mayo Clinic is 14 hours away and I am not sure how far Cleveland is. But my doc asked which one I prefer and I am not sure to be honest as I have never been to either place. Any thoughts would be very welcome. Thanks T.O.I.L. for Lyme! T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor for Lyme literacy *Websites* http://www.angelfire.com/tx3/RoseWriter or http://www.angelfire.com/biz/romarkaraoke/james.html --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Jerilynn-- I live near Cleveland and Cleveland Clinic is NOT the place to go for treatment of Lyme Disease. You will find it hostile, especially the rheumatology (sp?) dept. There is a doctor there who is a personal friend of Dr. Steere!!!! When I went in there for an opinion for my insurance Company, they don't believe in lyme in Ohio. Eventhough my parents lived in PA and I would visit them often, " there is no lyme in Ohio " was their response. There my be some doctor's there that treat lyme, but as far as I know from my experience and that of the lyme disease support group that was here, it is NOT the place to go to be treated for lyme. In particular, the dr. I saw was Dr. Wilke. I see a llmd in western PA. Good luck, Rhonna in Ohio Jerilynn wrote: > Hi, > Quick note to ask about these two clinics and how equipped for Lyme they > are. Does anyone know if the Cleveland Clinic is dealing with Lyme disease > and are they good for lymies to go to. Mayo Clinic is 14 hours away and I am > not sure how far Cleveland is. But my doc asked which one I prefer and I am > not sure to be honest as I have never been to either place. Any thoughts > would be very welcome. Thanks > > Jeri in IN USA We can do it together! > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Hi, neither is good with lyme, just my opinion. Connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Rhonna, What type of treatment are you getting in PA? Is it working? Thanks Jeri in IN USA We can do it together! _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Jeri-- 5 years ago I started on oral abx. Several different types as best as I can remember. I showed some slow progress. Then after a year, I had a picc line inserted and I started on a 3 1/2 year saga of several different types of IV's. I was on Rocephen, Doxycycline, Zithromax, Claforan, back to Rocephen, back to Doxycycline and I cannot remember the name of the last one. I continue on oral Doxycycline and Avalox. I am back to teaching high school computers (including programming). I have regained my ability to think and reason. I have even started taking some updated programming classes to " refresh " what I cannot remember from before. I just finished a class in JavaScript web page programming and I came through with flying colors! This is from someone who 5 years ago could not remember how to get to the grocery store and got lost going to visit my parents! I spent 2 years on a cane because I didn't have the strength or balance to walk without one. I have been on flagyl. I have done the cholestyramine (I still cannot spell it) route. I was seen by Dr. Shoemaker in land with his visual contrast test. I continue on neurontin, effexor, levoxyl, maxalt (for migraine headaches), demerol (for the really bad migraine headaches), b6 & b12 injections weekly(in addition to my abx). I am back to walking my dog, I go to yoga class twice a week, I started doing handweights and I want to try tae-bo when the tapes get here!!! I cannot tell you how my life changed from the treatment I have received from Dr. Swami. I still have to watch what I do and not overdo (which was part of my problem before I got sick!). I make sure I get my sleep every night and I do not miss my medications. I just feel that if I can have my life back, even if it means I am still on medications, I still have it back. I can enjoy my children and grandchildren again! I am only 45 and I am so glad I did not end up in the nursing home 5 years ago! I still get tired. I work a full school day every day with teenagers! But I am getting my moxy back. It's great to be alive! Rhonna rhonna@... Jerilynn wrote: > Rhonna, > What type of treatment are you getting in PA? Is it working? Thanks > > Jeri in IN USA We can do it together! > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Mayo STINKS! Got dx of POTS (postural orthostatic tachacardia syndrome). Asked neurologist, " How DARE you incorrectly restate symptoms & call this acronym a diagnosis??? " (I was absolutely furious!) She was quite taken back; obviously, one of the " golden circle " at mayos. FLATLY REFUSED TO TEST FOR LYME: " THIS CANNOT BE LYME DISEASE. " Would love to hear more about those who have sued them! TRULY amazing how many neurologists DO NOT KNOW AUTONOMIC SYSTEM EXISTS. I'm no rocket scientist, but parasites attacking nervous system seems like a pretty good indication of the types of sxs lymies suffer with. (can they not read???) > I haven't heard the best news about the Mayo clinic. however, that was a few > years ago when one of our Tx senators was diagnosed with the wrong diagnoses > and later found to have lyme...I heard he sued Mayo but don't know the > details. Don't know anything about the Cleveland clinic. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Cleveland Clinic all the way. I had my esophagectomy there 10.5 weeks ago by Dr. Rice and I highly recommend him. in NY Mayo or Cleveland? achalasia > > I would like to know everyone's opinion regarding Mayo Clinic, in > Rochester, or the Cleveland Clinic? Which one would you choose > for > surgery? > > > > > Quote Link to comment Share on other sites More sharing options...
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