So lyme seems to be everywhere. A neighbor got my number from another neighbor in Moorpark (small town) to ask me about his 14 daughter with brain swelling and brain lesions, can no longer walk, cognitive difficulties, etc, who they suspect has lyme. Their neighbor across the street got lyme, is better now and was the one who suggested their daughter might have it. Doctors at Childrens Hospital refused to even test her for lyme as lyme does not exist in California. (right!) This is the 4th child in L.A. whos parent told me Childrens Hospital refused to test their child for lyme, and who, when tested, turned out to have it. Turns out, she has lyme (clinical diagnosis) and is in a wheelchair. Her mother was tested, lo and behold, she also has lyme, too! My nurse (from the neighborhood) that does my IVIG treatments started telling me about her son and all these strange symptoms, I tell her about SIBO and lyme and who to go to. He tests positive for SIBO, and is now awaiting lyme test results. Another woman contacts me with a 16 old boy who just tested positive who lives in Moorpark, now shes tested her other son - he is also positiv. She is now getting tested. 15 other people (that I know of) within a 10 mile radius of me have Lyme. Im getting kale at Whole Foods and a woman asks me whats the best way to make it and starts telling me about all these food allergies she has, and she doesnt know what to eat and how her belly swells out to looking 5 months pregnant every time she eats, how she has GERD and nausea and headache. I tell her about SIBO and give her my number. When I tell her I have lyme and that SIBO commonly happens in Lyme, she starts telling me about her rheumatoid arthritis, bone pain, insomnia, difficulty thinking! I tell her to contact me for a doctors list so she can get tested for lyme. This woman is in tears thanking me, telling me how no doctors have answers and she is just shuffled around. My doctor told me she met a GI doc from L.A. who was at his first Lyme convention. She explained the GI/lyme connection. He calls her several months later saying he is testing all his Crohns, SIBO patients (etc.) and how almost ALL are testing positive for Lyme! One of the most respected Lyme docs in the nation says there is not one MS, Parkinsons, or ALS patient that he has tested for Lyme that did not test positive. 4 doctors at the International Lyme and Associated Diseases Society convention last year, asked patients to dinner. They asked the patients what their treatment is and how they are getting better. Let me reiterate that, they were so desperate to find the right treatment for themselves, as they had lyme, that they were picking the brains of patients! One doc was a prominent cardiac surgeon who went to Harvard. Both he and his son have lyme. He said, I went to Harvard, and I have no idea how to save myself or my son. There are 400 people in the L.A. Lyme group (which really got started about 1 yr ago), around 30 more joining each month. Every story I hear involves misdiagnosis (anywhere from 6 months to 20 yrs), going from doctor to doctor desperate for answers and getting none, being told they need to see a psychologist, as they lose their ability to work and function, that their tests are normal, etc. And, this is in L.A. Back east, whole neighborhoods have it, everyone knows someone with Lyme. Then, imagine this going on internationally. Same stories, same deplorable patient treatment. So much needless suffering, so many lives ruined, such a burden on society. When is the world going to wake up, start funneling money into researching, and start training doctors? Its so exasperating hearing the same story over and over. Mothers are unknowingly passing this to their kids in utero, then having to live with that and watching their children go through painful treatments, or decide which child to treat, because they cant afford to treat all four of their kids infected! Things really must change. The CDC and IDSA have done nothing but deny scientific research, downplay the problem, set up guidelines that insurance uses to deny life saving meds, and testing that misses up to 60% of positive cases, and lie about its existence in most states....FOR DECADES. These are the same government agencies that people are counting on saving us from Ebola.
Posted on: Sat, 18 Oct 2014 01:16:28 +0000
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