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The Infectious Diseases Society of America (IDSA), the American Academy of Neurology (AAN) and the American College of Rheumatology (ACR) are jointly developing a systematic review and guideline on treatment of Lyme disease.

The 30-day open Public Comment period on the Lyme Disease Guideline Project Plan started March 8 through April 9.During the Public Comment period, anyone may comment on any aspect of the Plan, including the methodology and development process utilized as well as adherence to the IOM standards. Please see here for more details.

7 Comments on “Act Now! 30-day Public Comment Period on Lyme Disease Treatment Guidelines

  1. I raced to a RH doc when I had joint swelling etc. I knew from research it could be one of only four diseases including Lyme, which I dismissed at the time based on CDC guidelines. The RH doc wasn’t even going to test me for Lyme until I said, “What about ruling out Lyme?” A month later with resuls she sent me to my primary doctor concerned about antibodies to thyroid & said I had no arthritis and no Lyme.

    After my primary blew me off, I went to another doc who happened to be Lyme-literate. She gave me the Western blot and the test came back positive. The Lyme-literate doc said, “Oh, that RH doc will never diagnose Lyme even if she knows you have it.” Three years later, I am still suffering from chronic Lyme. The doc did all this knowing I had lost my only 12-year old son two years before and that my husband had a rare and serious lymphoma. It is beyond comprehension that people who claim to be in healthcare could allow it to happen.

    I would be the biggest advocate out there if I could only stop my head from ringing and find the car keys. I fear I will be another Alzheimer’s statistic in 10 years due to my doc’s outrageous neglect (spirochetes were found in the brains of 8 out of 10 autopsied in one study). I now pay for my own health insurance but spend most of my healthcare dollars out of pocket for alternative providers, the only ones who will treat Lyme. I was fortunate to find one who had Lyme herself and yet, being a naturopath, she too has limits to what she can prescribe. Also, I am not sure that antibiotics are the answer. After 7 mos I got a systemic candida infection (just as bad as Lyme) and now am on herbs which are just as helpful without the side effects (so far).

    The medical establishment needs to wake up and deal with this disease with integrity and professionalism — their families and friends are suffering too. We need docs who are vigilant enough to head this off at the pass, research to find the best way to treat the disease, and more accurate info campaigns. I went to infectious disease doc who knew my husband and my situation. She would not — I should say could not — prescribe antibiotics because “her world” does not believe that I have Lyme unless there are two positive tests. My brother, who works at NIH as a biochemist, says if they found the bacteria, then I have Lyme. No ifs ands, or buts.

    Oh, by the way, I got Lyme without seeing a tick on me, just a suspicious bite and recalling seeing something that looked like it [could have been a tick]. No 24 hours, no pulling it out of me, no bull’s eye rash. Just symptoms consistent with Lyme (ILAD list not CDC list) that came on very gradually and then hit me like a brick: sharp headaches, eye trouble, fatigue, head ringing, dizziness, and then the telltale joint pain that sent me to the doc. I didn’t go until then thinking you know at 58. I’m old, menopausal, suffering emotionally, always had stomach issues, etc. Lesson learned. Please change your approach!

  2. Seeing my daughter suffer with the aftermath of lyme disease and having to adjust her whole lifestyle for something that is so preventable makes me wonder why the doctors don’t believe it exists. Antibiotics are simple. If they suspect lyme disease, give them antibiotics! It is baffling to me that it isn’t recognized for what it is.

  3. I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Lyme patients. It uses a fiber-optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?

  4. My daughter has suffered with this insidious disease for three years and the medical field is the most frustrating to deal with….their denial is unconscionable. It has been so costly and trying to find a doctor who is knowledgable has been so disappointing. To watch your child be bed-ridden for weeks and experience horrible rashes, joint aches, migraines, vertigo, seizures, and myriads of other issues only to be told it’s all in her head. I wish the CDC would list Lyme disease as the pandemic that it is and fund research. How sick is it that your dog can be vaccinated for Lyme disease but humans are denied?

  5. I am a single parent, who is supposed to be retired…a retired teacher. Nope, went back to work to help finance this disease that my 24 year old daughter has been diagnosed with. This year, between my daughter and I, I have over $27,000 in medical deductions because western doctors cannot treat her. Yes, she is slowly getting better from her OWN research and since seeing a Naturopathic Doctor who specializes in the treatment of Lyme. Many of us are unfairly going into debt or sacrificing way too much when people who have western diseases, e.g. cancer, diabetes, are being covered. Something MUST be done to acknowledge and treat this disease. If we could even be compensated for half the treatment, that would be a miracle. Why are Western doctors not doing anything about it?

  6. I have a 25 year old daughter who was bit by a tick when she was 10. Came down with the flu 2 weeks later and tested negative with a Western Blot.

    She has been symptomatic the past 10 years diagnosed with Fibromalagia, Chronic Fatigue, IBS, depression, anxiety, neurological problems, etc… If she had been treated with a 2-month course of antibiotics to begin with she would now be living a normal life. Unfortunately, she’s never had a normal life and is now on disability.

    I pay out of pocket for a doctor trained in chronic Lyme disease and all the medications and supplements needed to support her disease. She has had health insurance through Kaiser her whole life but they refuse to believe she has chronic Lyme and or treat her with anything other than antidepressants.

    The CDC has stated that the number of diagnosed Lyme cases per year is grossly underestimated and is probably 10 times higher than that. It’s time for this disease to be recognized, proper testing utilized by HMO’s, and a formal treatment plan incorporated.

    Thank you for this opportunity.

  7. I have been suffering from the long-term effects of not being treated for Lyme disease and co-infection at the time of the bite. The disease festered in my body. I have been treating my disease for five years and spend an average of $50,000 out-of-pocket per year. This has put an immense amount of strain on my family and our financial situation. I have read many books on the subject and do not understand why our government is turning a blind eye.

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