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edscherer Posts: 1
New Member
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Hi Susanne, SO SORRY to hear of your intractable suffering. My own 2 cents worth after spending YEARS in the mainstream medical care complex at places such as Johns Hopkins, etc., is that you consider seeing a very open minded physician in your area and at least consider doing this instead of waiting for a hospital appointment until February. They will probably do the usual tests - ANA (anti-nuclear antibodies), RA factors, CRP (C reactive protein which is a measure of inflammation in the body), sedimentation rate (which measures the viscosity of your blood serum; the thicker it is the more likely that there are lots of things in your blood which indicate a disease process), etc. These tests are frequently inconclusive and there are many many diseases that imitate Rheumatoid Arthritis, one of them being Lyme disease. You might want to go to lymenet.org or ilads.org and use referral tools to find a Lyme Literate Medical Doctor (LLMD) who could hopefully see you sooner. The nice thing about these kinds of doctors is that they tend to be much more open minded than the mainstream medical community and consequently are willing to consider disease processes that might not even dawn on typical physicians. In addition, many large hospitals are also academic institutions and rely on government funding of research which presents a conflict of interest in the event that you had an illness that may have been caused by governmental biological research. These types of institutions will do everything to prevent jeopardizing their N.I.H. grant money right up to not performing certain tests or claiming test results that indicate you have a certain disease such as Lyme disease are inaccurate. I had a physician who was supposedly the resident Lyme guru in a very prestigious medical institution actually take my positive Lyme disease test results and throw them in the trash can under his desk as soon as I presented him with them. These tests were performed by a lab the hospital routinely uses for tests it does not do in its own labs. I went into that appointment after having lived my life unable to do anything but lie on the floor for 2 years with a 100.5 degree temperature (97 is normal for me), a knee the size of a cantaloupe, olecranon bursitis of the left elbow which presented as a mass the size of half an orange hanging off my elbow, a migraine headache, tinnitus so loud I could barely hear, balance issues, needing to rely on a walker, etc., and he went so far as to say my test results were not indicative of disease process, I was not running a fever, I had probably done something to my knee and elbow and hadn't remembered and all the other symptoms were just a part of getting older. To make a long story short, it may be a better option for you to avoid the whole hospital course and find a highly regarded physician using the websites mentioned at the beginning of this message. And you may want to consider other possibilities than RA because a lot of rheumatologists, infectious disease physicians, etc., all have their agendae at heart and as a result your health may rate a distant second to them protecting their careers and covering their backsides. Take care and best of luck to you. Regards, Ed S. Baltimore, Maryland |
feb a long way off.....my doc no idea what to give me....
