This is the letter Im planning to present to Congressman DeFazio in tonights town hall meeting. Mr DeFazio, Our community desperately needs your attention and help. Lyme Disease and the possible 350 co-infections are affecting millions a year. The CDC raised its estimate of Lyme last week to over a million new patients a year; I think the number is closer to 54 million which still may be conservative. We now know that: Parkinson’s, Fibromyalgia, Lupus, Autism, Multiple Sclerosis, Chronic Fatigue, Alzheimers, Neuropathy, Arthritis, Breast Cancer, Leukemia and many other immunity illness patients actually have underlying infections. These illnesses are simply the ‘symptoms’, we need to begin to treat the underlying causative, Infectious Agents. Agents can be passed congenitally from mother to child in the womb & in breast milk, new studies show it’s a STD, none of our blood banks are testing for it either. This is a true pandemic. Sadly many commit suicide as they simply can’t take it anymore. This is a very rough illness which is costing our nation billions in medical costs, lost production, disability, food stamps and other forms of support. The Infectious Disease Society of America or IDSA has elected to follow old, 2004 CDC surveillance guidelines. These were never intended to be used to create the current flawed ‘Patient Treatment Guidelines’ used today. The International Lyme and Associated Diseases Society (ILADS) guidelines are truly helping patients. These are the just released ILADS treatment guidelines ilads.org/ilads_news/2014/new-standard-of-care-guidelines-for-treating-lyme-and-other-tick-borne-illnesses-released-by-international-lyme-and-associated-diseases-society-ilads/ Yet no doctor in the state of Oregon is following them. This is due to the Oregon Medical Board’s threats to suspend & revoke their licenses. We feel this is a travesty for Oregon patients. I myself had to travel to California to be seen by a Lyme Literate Medical Doctor LLMD, in fact one of the top in the nation. I also want the president to create a national Lyme Disease task force to review our wretched IDSA & CDC policies denying Lyme patients proper care. We are joined together demanding that patients in Oregon get access to medical care for Lyme Disease and we get insurance reimbursement for Lyme Disease using any standard of care that has been peer reviewed & published. HR 4701 is scheduled to go to a vote this next session. We desperately need to give MDs the protection to be able to properly treat us. We need you to support HR4701. We all hear the false statement of, “there is no Lyme in Oregon”, well then why are infections of Lyme in dogs so high? This is a 2013 map of Lyme reported by veterinarians in dogs! 2013 We have Lyme here! Oregon hasn’t performed a viable tick sweep in over a decade. So who knows what infectious agents are present, infecting unknowing citizens & tourists each day! We need Federal & State funds to get these sweep performed, ticks tested for a multitude of infectious agents and for the data to be public. It’s too bad that OHSU & Dr. Gilbert (a past IDSA president) is denying Lyme and is creating public policies against us. We need the truth to come out. Just look at the 20 year CAPC forecast, Lyme is migrating towards the PNW! 2034 capcvet.org/expert-articles/building-the-capc-forecast/ My care under this LLMD is paid for out of pocket. Yet every single time my LLMD orders medications to treat my Lyme, I get denials from Trillium. With no viable forms of treatment for myself, Ive begun to take Equine Worming medicine ~ which has actually been helpful. But we humans deserve to be treated better than a horse! Ya know, the Affordable Care Act provided a 36-month window to guarantee medical providers will be paid 100%. This was intended to provide updated care for difficult & complex patients, like me and hundreds of thousands of others, to get care! Where is our care? I want to meet with you in person to discuss this matter. Not just my case, but the cases of all in Oregon, and the US. It’s a very sad day when we begin to drive over in cars people protected by crosswalks. For Lyme Disease patients, FAILURE TO TREAT = DEATH. It’s this failure that equates to running over folks and leaving them for extended suffering and eventually death. Most Lyme patients commit suicide because it too tough to live with the failed treatments. We deserve better care by Oregon’s physicians. They took an oath to care for us and to do no harm. Failing to treat parasites = harm! My symptoms have been brain fog, cardiac issues, vertigo, malnutrition (caused a drop in 40#), intractable pain (managed with narcotics for 15-years), neuropathy, loss of sleep, bad sleep, muscle stiffness to include tendon & connective tissue damages, visual imbalances, ringing in the ears, TMJ, hypoglycemia, cognitive issues, cytomegalovirus, Epstein Barr and several other viruses, degenerative disc disease (I have one spinal fusion), Appendix inflamed, and many others. I have Lyme Disease and one of its possible 350 co-infections, Babesia. Now Lyme is a very tough disease in its self, but Babesia is DEADLY. It caused stroke & heart attacks. Plus I have a gene defect MTHFR, which also adds more cardiac risks for me. I was in the hospital 6-times last year with cardiac issues. I was bed ridden from 12/2012 to 3/2014. I have goals, dreams, projects & family. I want to spend time off the sofa wasting away and experience the outdoors, people and our ocean again. My treatment is expected to take years. I want my life back. I want to be healthy, happy & pain free again. I never want anyone else to endure what Ive been thru. Now Im fully disabled on food stamps. All this could have been avoided, had any doctors had properly tested me for Lyme Disease & its co-infections. They knew better but were too weak to venture down that road, citing the Oregon State treatment guideless. It’s these overly restrictive and wrongful policies which are killing us. I shall never forgive the doctors all the damages caused me. You took an oath to do no harm, Failure To Treat is Harm!!! I’ve got 2,300 members on my FB group Lyme Disease Eugene Oregon, https://facebook/groups/LymeDiseaseEugeneOregon/. Please join us in helping needy patients all over Oregon gain proper medical attention. Thank you, Deb Aka DiveGirl Deb Eugene OR
Posted on: Thu, 14 Aug 2014 23:09:16 +0000
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