Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 Did you happen to see the show on Tuesday evening? Although I know there is a real reason for FMS whether it is bacterial and what kind or viral or left over vaccine damage I don't know but what I found interesting was the second doctor who was butting heads with the Rheumatolgists for telling people that they have an incurable disease. His argument was that the Rheum's set people up for depression etc.. by telling them they will have this disease forever and there is nothing that can be done. First of all we know there can be something done about many FMS patients and second there could be a million things causing this problem but Rheumatologists are the most worthless doctors in the group. The segment showed the patient who was obviously in pain all day, every day. The Rheumatologist told her that she had FMS and she would have it forever. Period. What an idiot!!! That doesn't even make sense. It just burns me up!! Of course the entire support group they showed was women. It even talked about word finding difficulty. Some interesting news about the nerve research they have done about FMS. What ding dongs! Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 What is this about rheumatoligists? Are they always so bad. My daughter who has ambigous blood results about Lyme and ambigously untypical intermittent and mostly mild symptoms is seeing a neurologist and a rheumatoligist this week and next. The only referral I could get to a " LYME specialist " was ironically to the famous Dr. Dattwyler in Stony Brook. The pediatrician revoked our prescription for antibiotics after only 7 days and second blood test results that were not positive enough. So are rehumatoligists all so bad? Or do some of them acknowledge and treat Lyme too? Re: [Lyme-aid] Dateline - FMS >Did you happen to see the show on Tuesday evening? Although I know there is >a real reason for FMS whether it is bacterial and what kind or viral or left >over vaccine damage I don't know but what I found interesting was the second >doctor who was butting heads with the Rheumatolgists for telling people that >they have an incurable disease. His argument was that the Rheum's set people >up for depression etc.. by telling them they will have this disease forever >and there is nothing that can be done. > >First of all we know there can be something done about many FMS patients and >second there could be a million things causing this problem but >Rheumatologists are the most worthless doctors in the group. > >The segment showed the patient who was obviously in pain all day, every day. >The Rheumatologist told her that she had FMS and she would have it forever. >Period. What an idiot!!! That doesn't even make sense. It just burns me >up!! Of course the entire support group they showed was women. It even >talked about word finding difficulty. Some interesting news about the nerve >research they have done about FMS. What ding dongs! > >Kathleen > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 please call dr. jones. kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Vicki, Sorry if I didn't explain myself well. I tend to ramble. I will try to explain. Yes I do believe that FMS exists but I don't believe that " nothing " is causing it. Whatever IT is it's treatable to some extent. This is your body's immune system reacting to something. The same way if you had a flu. It is not autoimmune and your body is attacking itself. I do believe that they are ding dongs for diagnosing people with FMS based solely on pushing their pointy little fingers into someones muscles. Gee - all those years in Med school for that!!!! If there is not a definitive test for something then I have a hard time believing anyone's diagnosis and I have a hard time believing even those who have a positive test for something. Tests aren't perfect and you had better come up with something a little more tangible than a pointy little finger. Good thing brain surgeons don't work this way. With all the research that has found Lyme in nerves and tissues I can't believe that they can ignore the possibility of a chronic infection causing FMS. The part about the Rheumy telling people that they have FMS and they will have it forever and there is no test for it and no real cure is so absolutely unethical in medicine that I can't hardly stand it. Even it is true you can't tell people that. It sets them up to behave like they have a disability and to quit trying. It almost seems like a psychological experiment. If we tell some of our patients they won't get better and others we tell them things they can take or do to alleviate some symptoms we will see which ones get worse or better!!! I work for breast surgeons and I can't even imagine what would happen if one of them said something like this!! It doesn't help that most of these FMS patients are women. Make no mistake there is a double standard in medicine. I absolutely mean no offense to any men Lyme patients here. I am sorry you are in so much pain all the time. It is probably because you still have Lyme. I don't know what to do for this. I pray you start feeling better soon. What I meant was that many FMS patients can be helped by abx. Take care, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Kathleen, I saw that show and agree the Rheumatologist are horrible. But I don't get your point about what you are trying to say about FM? My doctor told me, and I believe him due to my symptoms that if you have Lyme Disease you can get FM, which exacerbates the Lyme, and vise versa. I have such horrible pain, and all 18 trigger points, which is the way they diagnose FM (actually you need only have 11 of the 18 to be considered FM). My doctor also said, if I don't deal with the FM (treating, like trigger point injections and deep tissue massages) it will be all that harder to treat the Lyme. He also said, he knows that Lyme patients hate to be told they have FM, but he isn't saying you don't have Lyme, just that you have FM as a result of Lyme disease. I don't know if you were saying they are ding dongs because they diagnose FM and you think its Lyme, or what you meant, so sorry if all this was unnecessary. I also think FM (my doctor too, who sees a lot of FM patients) is a brain problem, meaning our serotonin and dopamine receptors are malfunctioning and make us perceive pain more. With so much pain, but with so many normal neurological and muscle tests on FM patients, and yet still the muscle and fascia pain, it has to be something in the brain. But that doesn't mean its " all in our heads " as in Hypochondriac. I did find it interesting that the one Rheumy said its bad to tell people they have FM because then they feel hopeless or like cripples, what else are they suppose to tell us? Talk to you later. Vicki, Md P.S. What did you mean by " we know there can be something done for FM patients? I'm in horrible pain all the time and having a very difficult time finding relief. >Did you happen to see the show on Tuesday evening? Although I know there is >a real reason for FMS whether it is bacterial and what kind or viral or left >over vaccine damage I don't know but what I found interesting was the second >doctor who was butting heads with the Rheumatolgists for telling people that >they have an incurable disease. His argument was that the Rheum's set people >up for depression etc.. by telling them they will have this disease forever >and there is nothing that can be done. > >First of all we know there can be something done about many FMS patients and >second there could be a million things causing this problem but >Rheumatologists are the most worthless doctors in the group. > >The segment showed the patient who was obviously in pain all day, every day. >The Rheumatologist told her that she had FMS and she would have it forever. >Period. What an idiot!!! That doesn't even make sense. It just burns me >up!! > >Kathleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 In a message dated 01/08/2000 5:28:33 AM Eastern Standard Time, drougas@... writes: << This neurologist was very nice though and admitted she is not up to date about Lyme. I filled her in based on what I have been learning in the past week. At least she does not tell me to " stay away from the web " in regard to Lyme info as most doctors do. >> I copy many of your letters and other information for my doctor, and he loves it . He is one of the most open-minded, non-egotistical doctors I have ever known. Very down to earth person and willing to listen to his patients. It's a good feeling to have someone who understands. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Hi Jim, Some people have seen Rheumatologists for their LD, others see Infectious Disease doctors. I had bad experiences with Infectious disease doctors.....if you ask me, 90% of the medical profession, regardless of their specialty, know nothing about LD, and are unwilling to learn. Dr Steere, our nemesis, and the identifier of LD back in the 70's, is a Rheumatologist, and this could be why the Rheumies have their opinions that LD is easily cured with a short bout of abx. As for Dattwyler, I would not take my dog to him, and I hope you have reconsidered taking your daughter to him.....he would only tell you that if she had LD, she is now cured, despite any lingering symptoms. Best to you, Marta From: " Jim Drougas " <drougas@...> > What is this about rheumatoligists? > Are they always so bad. My daughter who has ambigous blood results about > Lyme and ambigously untypical intermittent and mostly mild symptoms is > seeing a neurologist and a rheumatoligist this week and next. > The only referral I could get to a " LYME specialist " was ironically to the > famous Dr. Dattwyler in Stony Brook. The pediatrician revoked our > prescription for antibiotics after only 7 days and second blood test results > that were not positive enough. So are rehumatoligists all so bad? Or > do some of them acknowledge and treat Lyme too? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Hello again, We took my daughter to a neurologist to make sure there is nothing wrong in the brain department. She tested fine on all outward signs. The Doctor decided not to do an MRI because she does not think a 5 year old would test well and keep still long enough to get good results from the test. I notice you mention lesions showing on MRI as proof that antibiotic therapy is warranted. Do you think that if I can get an MRI done that such results will help us get a better diagnosis for Juna? What exactly will an MRI reveal that is especially relevant to Lyme? And will they even look for such things in an MRI without knowing enough about Lyme? This neurologist was very nice though and admitted she is not up to date about Lyme. I filled her in based on what I have been learning in the past week. At least she does not tell me to " stay away from the web " in regard to Lyme info as most doctors do. As if we cannot be responsible for our own decisions about our health or our children's health. We certainly are not rushing into the Dattwyler realm. One person suggested he might know more than he admits. But there is no reason to think he will treat my daughter at all. And any reassurances he gives are pretty meaningless at this point. Re: [ ] Dateline - FMS >From: " J & M McCoy " <mlmccoy@...> > >Hi Jim, > Some people have seen Rheumatologists for their LD, others see Infectious >Disease doctors. I had bad experiences with Infectious disease >doctors.....if you ask me, 90% of the medical profession, regardless of >their specialty, know nothing about LD, and are unwilling to learn. Dr >Steere, our nemesis, and the identifier of LD back in the 70's, is a >Rheumatologist, and this could be why the Rheumies have their opinions that >LD is easily cured with a short bout of abx. As for Dattwyler, I would not >take my dog to him, and I hope you have reconsidered taking your daughter to >him.....he would only tell you that if she had LD, she is now cured, despite >any lingering symptoms. >Best to you, >Marta > >From: " Jim Drougas " <drougas@...> > >> What is this about rheumatoligists? >> Are they always so bad. My daughter who has ambigous blood results >about >> Lyme and ambigously untypical intermittent and mostly mild symptoms is >> seeing a neurologist and a rheumatoligist this week and next. >> The only referral I could get to a " LYME specialist " was ironically to the >> famous Dr. Dattwyler in Stony Brook. The pediatrician revoked our >> prescription for antibiotics after only 7 days and second blood test >results >> that were not positive enough. So are rehumatoligists all so bad? >Or >> do some of them acknowledge and treat Lyme too? > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Hi Jim, Stay away from Dattwyler and Stonybrook!!!! They will treat for a very short period of time (if at all!) and then tell you that your daughter is cured. This can do more harm than good...believe me, I've gone through it. And avoid having a spinal tap done unless she has an acute case of encephalitis. It is a very poor test to subject anyone to for a Lyme diagnosis (been there, did that...ugh!). Also, take Kay's advice...she knows what she is talking about. If you live on Long Island, let me know. I can refer you to an excellent support group. Good Luck! Joan LI NY 1st Known Deer Tick Bites & Sx: '85 1st (Neg): '89 Cont'd Sx, Neg. s & No LD Dx: '90-'99 1st WB: 4+ Specific Bands: 4/99 Late Neuro-LD Dx: 6/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 Hi Jim, Glad your daughter checked out OK with the neurologist, and nice that the doctor admitted she did not know much about LD.....most just say there is nothing to it. The doctor was right, your daughter would not do well in an MRI.....it is a long process. As for my lesions, my tick bite was on my scalp and I found it in August 1996. I became immediately ill, turned out later I had HME (another tick disease) anyway, I began complaining like most people with LD, that I was forgetting things, becoming confused, I knew something was wrong, so I asked for the MRI, and a brain lesion similar to one that would appear in MS, but also seen in LD was found. I also had neuro psychological testing done which showed brain damage. Two years later, I now have two more lesions. I am wondering.....is your daughter displaying anymore symptoms since her last stiff and painful neck incident??? Based on your reply, I would be able to suggest whether I thought more treatment or testing was necessary in my oh so humble opinion. Let me know, Hugs, Marta > From: " Jim Drougas " <drougas@...> > > Hello again, > > We took my daughter to a neurologist to make sure there is nothing wrong in > the brain department. She tested fine on all outward signs. The > Doctor decided not to do an MRI because she does not think a 5 year old > would test well and keep still long enough to get good results from the > test. > I notice you mention lesions showing on MRI as proof that antibiotic > therapy is warranted. Do you think that if I can get an MRI done that > such results will help us get a better diagnosis for Juna? What exactly > will an MRI reveal that is especially relevant to Lyme? > And will they even look for such things in an MRI without knowing enough > about Lyme? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 jim ......if she is not up to speed on lyme educate her........i bring my VA docs all sorts of stuff on lyme ....as for my llmd i talk to him via email and forward any new stuff i find to him ( ihave more time to research then he does) he loves it ....especially since his wife and daughter suffer from lyme.....Reid Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.