I've had an equivocal test for Lyme and have so many symptoms. My PCP refered me to the Univ.of Michigan Rheumatology Clinic. I told doctors there about my Lyme test and got a lot of responses such as: "There's no Lyne in Michigan" and "You tested negative for Lyme, so you don't have it." When I presented factual arguments to these responses, I was redirected and seemingly brushed off.
How could one of the best hospitals in the country be so misinformed about Lyme disease? Are doctors really this ignorant in regards to Lyme? A simple google search would set the record straight. Are most doctors "playing dumb" or do they genuinely not recognize Lyme when it presents?
Has anyone else had similar experiences with university or research hospitals? If so, what do you recommend that I do to fight for a diagnosis?
My worst experiences have been at large, university hospitals. I have heard many other people describe the same situation. You cannot win. I wasted time and money going there. You will probably get diagnosed with fibromyalgia, cfs or "it's all in your head". My suggestion would be to go to lymenet dot org and post there. People will help you find a doctor who knows about lyme.
Johns Hopkins completely disregarded my Lyme. I had peripheral neuropathy confirmed by emg done by my local neuro. I had several months of treatment and repeat EMG at Hopkins (I was sent there to rule out ALS) indicated I no longer had peripheral neuropathy.
Rather than conclude that treatment was working they stated I didn’t have Lyme and My neuro screwed up the first emg on all of my limbs. Even though they never received his emg report.You need to go to a LLMD.
Please read "Cure Unknown" and your eyes will be opened to all the short falls to dx lyme.
I think it's because they just don't know much about it. They rely on test results which are so flawed. Doctors don't like to treat without abnormal test results. This is pretty much how the system works. Also, the treatment is very expensive and insurance companies don't like to pay. I was told that "there was no such thing at lyme in Ohio" even though I had 3 bullseye rashes and brought pictures with me.
Was told Lyme doesn't exist in Virginia. What a coincidence!
I don't really have the fatigue associated with this disorder. But I don't have the stamina either. Muscle relaxers by the idiot doctor have helped me sleep and relieved me of most fatigue. I had migrating joint pain and burning sensations in my feet. That has been replaced overnight by crepitus. And I mean snap, crackle, pop. Including my neck and throat when I swallow especially in the mornings.
Vision problematic. Strangest disease I ever heard of.
Doctors are running scared I think.
They don't know everything. And Lyme is such a vague disease...A very difficult clinical diagnosis. But they SHOULD know more than they do I think.
10 days of atx was obviously not enough. I needed 21 according to the American physicians something or other Web site.
I had no idea either what I was in for. This is going to be expensive to get well. I guess I'm willing to pay for my health. I have to work a lot of overtime though.
Short answer is NO. I went to UCONN Health Center, saw several docs there, including highly regarded neurologist. They were useless. Keep in mind this is in CINNECTICUT, the epicenter of the Lyme epidemic. Only until I went to a LLMD (must be ILADS doc), did I finally get a diagnosis and start treatment.
"Mainstream" medicine failed me completely. They adhere so ridly to the IDSA guidelines that they miss up to half the cases.
I think part of it is political. It doesn't seem like the pharamaceutical companies are interested in chronic conditions where the treatment is antibiotic therapy. Antibiotics have to be cheap... otherwise we may have a public health crisis.
It is the pharmaceutical companies who are doing their research on many illnesses and handing the results, and the recommended therapy, to the physician. Take fibromyalgia, for instance. Many physicians didn't believe it was real until the phamaceutical companies jumped in and fortunately, did research and came up with prescriptions. Of course my only concern there is that there are other treatments that include supplements that are also beneficial to fibromyalgia patients and they often get overlooked by health care practitioners.
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