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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
Marebears Female, 34 years CINCINNATI - OH Member since Jul 2008
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Best Wishes~
Have done much reading, lyme conferences DVDs, and searching for dr.s who might know diagnosis. My lyme test was negative, so we dismissed that idea, for too long. Many years later have learned the tests are so inaccurate, may stay negative until adequate antibiotic treatment, and for some stay negative for ever.
It is a diagnosis that should be made based on clinically symptoms. Yes, all of my other testing was negative. My dr. specializes in chronic fatigue, and so attends conferences on such, which now include lyme, as symptoms overlap. Lyme is considered the next great imitator, as syphilis was the first. Because lyme can be so devastating, the earlier the antibiotic treatment starts the better.
Please google lyme sites if you haven't already. I don't remember exact addresses, but lymenet, lyme disease association, international lyme disease and associated diseases society (ilads) are good. Some have dr. referral for near your location. My personal opinion learned the hardest way, if cause of symptoms can not be identified, give antibiotics for a month and see what happens. If the person gets to feeling more ill (herkheimer reaction) you are probably on the right track.
Bottom line, you may need to go to a specialist (an open minded one at that) to get an appropriate diagnosis. At 4.5 years I traveled to NYC to Columbia Univ. Lyme Dis. Research Center, which confirmed the diagnosis. I live in Alaska (no ticks here) and another friend from here had similar experience; he finally got accurate diagnosis at John Hopkins Univ.
It is devastating illness if not treated adequately; symptoms can start years later and can evolve over months. Dr.s may be reluctant to treat a 3 year old with long term antibiotics (which is why you might need to find one open minded). My husband was against antibiotics for more than a month, but he also agreed with dr.s who said it was psychiatric. When he saw how rapidly I regressed when off antibiotics for a week after being on several months he finally realized I did have lyme disease in my brain. I was on oral antibiotics for a year with some improvement, but then the real lifesaver of 5 months of IV infusion Rociphen. I have been progressively improving over past 1.5 years since this stopped. Lyme releases neurotoxins. I do want you to know I am much improved :)), but I really suffered needlessly. This is a very grave disease - don't mess around waiting.
My son and family now live in Philly, and because of my experience they do not take possible exposure lightly. Please read websites. I hope you can find a cause, even if it turns out not to be lyme.
This might be a duplicate posting of comment, as I think my first did not go through.