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SPEAK UP: Will Gov. Andrew Cuomo approve the bill on treatment for Lyme patients? YESTERDAY'S RESULTS: Will NY take action to eradicate Lyme? 37 Yes, 68 No

Posted 9 months ago.

6 Comments

  • Maryellen donlon - 9 months ago

    Reading all these entries is like reading the story of my daughter's life. She had lyme when she was 10 and treated with 2 weeks of anyibiotics. She has been chronically ill ever since. She was treated by one of the top rheumatologists for an autoimmune disease she fid not have for over 6 years. Has since been rediagmosed with two Lyme coinfections by a wonderful lyme literate doctor who also suffers from lyme. She aldo jad to drop out of college because her cognizant skills were effected. She is mow 22 and incapable of holding a full time job and unable to finish her educatipn at this tome. She is on pain every day both physically and emotionally. So please telle why would governor cuo mot approve this bill. These antibiotics are saving my daughters life albeit very
    slowly but st least there is now hope.

  • In my psychotherapy practice, I see the human cost of late diagnosis and inadequate treatment of Lyme disease. Aside from the need to educate physicians about the complexity of Lyme and co-infections (tick-borne disease), we need to end the targeting of doctors who do choose to learn about it at medical conferences and treat Lyme comprehensively. All too often, they have been brought before their medical boards when they were, in fact, acting professionally, and getting patients well. The OPMC has had a history of targeting some of these doctors, and this bill will end that practice.

    Practicing as I do in a neighboring state, I see patients and their families who live in NYS, and I hear again and again about the difficulty in finding a Lyme-knowledgeable doctor. Those doctors who do understand the disease and treat efficaciously have long waiting lists. Therefore even patients who have been diagnosed have difficulty finding doctors to treat them when the illness has become chronic.

    A physician protection bill will allow more doctors to come forward, and to take on the challenge of treating these very ill patients.

    My fervent hope is that Governor Cuomo signs this bill into law. It not only protects doctors, but protects the citizen of the magnificent state of New York, as they enjoy the splendor of the Hudson Valley (where I used to live and practice), the mountain ranges, hiking trails, and splendid countryside!

    Sandy Berenbaum, LCSW, BCD

  • Phyllis Mervine - 9 months ago

    I hope he will sign it. Lyme disease is costing NY taxpayers hundreds of thousands of dollars they could spend on other things if people with Lyme were treated properly.

    In 1999, 4,403 cases of Lyme disease were reported in New York State. The cumulative total is now over 50,000 cases, or 500,000 according to the new CDC figures. This doesn't count people who are misdiagnosed or diagnosed with something else but who really have Lyme. Half the patients are likely to become chronic cases, given the standard short-term treatment.

    A recent national survey by LymeDisease.org found that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Fair or poor health was reported by 73% of patients with chronic Lyme disease. In comparison, only 16% of those in the general population report fair or poor health.

    The survey also shows that patients with chronic Lyme disease have high disability and unemployment rates. Over forty percent of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% of patients report that they have received disability at some point in their illness. This compares with 6% of the US population who are unable to work due to illness.

    Most patients report three or more symptoms as severe or very severe. The most common severe symptoms include fatigue (48%), sleep impairment (41%), joint pain (39%), muscle aches (36%), and other pain (34%). Physical or mental health problems limit Lyme patient functioning on 19 days each month compared to only two days per month for the general population.

    Chronic Lyme patients also use healthcare services more often. They are five times more likely to visit healthcare providers and twice as likely to be seen in emergency rooms as the general population.

    In a nutshell, this study shows that most patients with chronic Lyme disease have severe symptoms, require lots of medical care, and suffer a low quality of life with high disability and unemployment rates.

    - See more at: http://lymedisease.org/news/lyme_disease_views/lyme-policy-wonk-survey-results-published-chronic-lyme-patients-suffer-poor-quality-of-life-and-high-rates-of-disability-and-unemployment.html#sthash.E1yB6ija.dpuf

  • S - 9 months ago

    The fact that this is an issue is crazy. It's time for treatment for humans to catch up to the veterinary world. For years, vets have prescribed long-term antibiotics for pets diagnosed with or suspected of having Lymes. They are well aware of the dangers of procrastinating or short-channging the treatment. People deserve as good care as pets and doctors must be protected from being punished for giving proper treatment! And I hope by now medical doctors have gotten better at suspecting this endemic disease. I teach and several years ago had a young student whose knee joint swelling was erroneously diagnosed as rheumatoid arthritis and therefore went a woefully long time receiving the incorrect medication. Another had to leave school because the lag between symptoms and proper treatment allowed the central nervous system to be affected and she suffered memory loss.

  • L. Graziosi - 9 months ago

    My grandson who is 31 yrs. old has been told he has brain damage from Lyme disease since he was young. He was told he will not live to be old. How many other young children are going to be affected? What can be done to check them? It's a very sad situation. Some parents are not aware.

  • Diane C. Birney - 9 months ago

    Lyme disease and tick-borne illnesses are ENDEMIC in this area. People and pets are suffering as I speak and have DIED locally because of them. I met a young couple just TODAY who had to put their 10-month old puppy down because it had Lyme Disease so severely. Almost EVERY family in my previous neighborhood near Sylvan Lake was touched by Lyme in some way. Either an adult in the family had it - or a child - or their dog. To deny a patient long-term antibiotics and, instead, simply "hope" the parasite does not enter the sufferer's central nervous system, heart, brain - or other major organ is in itself misconduct/ If the only chance a person has - if all else fails - to stem the tide of this destructive illness is to prolong the use of antibiotics, I say, by all means go for it.

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