NY Governor Cuomo Signs Lyme Bill...

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duncan
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NY Governor Cuomo Signs Lyme Bill...

Post by duncan » Thu 18 Dec 2014 14:44

...or so some sources, including LymeNet Flash, would indicate. A confirmatory press release should be forthcoming, if those reports are correct.

This would be welcome news, so long as the wording of the bill has not been diluted.

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ChronicLyme19
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by ChronicLyme19 » Thu 18 Dec 2014 14:50

Ah darn, Duncan you beat me to it. Indeed the PoJo is reporting it's been signed. :D

This bill will protect doctors who treat Lyme and other tick borne diseases with long term antibiotics. http://www.poughkeepsiejournal.com/stor ... l/20576915/

S7854-A7558B has been signed, see the NYS Open access records here: http://open.nysenate.gov/legislation/bill/S7854-2013
"Dec 17, 2014: APPROVAL MEMO.27
Dec 17, 2014: SIGNED CHAP.532
Dec 5, 2014: DELIVERED TO GOVERNOR
Jun 19, 2014: returned to senate
Jun 19, 2014: passed assembly"
I'm hoping this bill give more doctors the courage to start treating Lyme. More Lyme doctors means more people saved and more heads thinking about cures.

For once I am happy to say I live in NYS :D
Half of what you are taught is incorrect, but which half? What if there's another half missing?

duncan
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by duncan » Thu 18 Dec 2014 15:40

Lots of very good people trying to make a difference out there, and a good portion of them live in New York State. This hopefully will aid in their contributions. Chalk that up as a big win for the Lyme community.

Lorima
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by Lorima » Sun 21 Dec 2014 15:47

This is quite an accomplishment. I'm sorry that legislatures are having to step in, where medical science has failed to correct itself. But I think it is necessary. I see few signs that mainstream medicine is catching on, to how serious the errors are, in the textbooks, (and weirdly, in medical journal editorials denigrating the patients and caregivers). But I'm in Boston, and the doctors in this community may be especially resistant and fearful when it comes to questioning academic authority figures. They'll probably be the last to catch on.

Funny, my ideals about democracy have taken a beating in the last couple of decades. (Not as suddenly as my ideals about science and medicine, when I read the foundational LD literature over a few days in 2007; but still...). But now it looks as if legislation is the only hope, to let the members of the Ad Hoc International Lyme Disease Group (which I'll abbreviate AHILD) know that they can't fool all the people all the time, even if they can continue to fool themselves. I'm impressed that the NY bill passed the state legislature unanimously; it shows that non-specialists who don't dismiss all the patients' and caregivers' experience as "anecdotal" can recognize that there is a serious problem in this area of medical science. And they have become capable of overcoming the natural reluctance to question academic medical authorities that most of us have. That is a big step.

I just re-read Stanley Milgrim's book Obedience to Authority, and was struck again by how hard it is for people to defy authority, even when they suspect they should. The most interesting thing is that they may believe, in theory, that it is is their duty to disobey orders that are morally questionable. But they usually can't translate that belief into action, once they have entered an "agentic" state, in which they have narrowed their focus to "getting the job done" (which I think is what happened to Henry, hv808ct, and the other underlings in AHILD). Eventually loyalty to "the job" (in this case of soldiering in their self-declared war against dissenters from the LD dogma, including patients) becomes the ultimate guide to moral righteousness, in their minds. I think that's how they are keeping this seemingly unconscionable project going, and I see no signs that they will stop packing the medical literature with their simplistic assertions and circular arguments. It feels like a moral duty to them.

Ordinary doctors in LD-endemic communities then feel like it's their duty to obey the dictates of so-called "evidence-based medicine," no matter how many patients with mid- and late-stage LD stream through their offices, offering abundant opportunities to view, first-hand, the actual evidence, which they aren't allowed to consider because it is "anecdotal." It would be funny, if it weren't so consequential.

In any case, with the medical profession caught in stumbling over its own feet, going in circles, it's up to those of us who aren't enmeshed in the authority structure of academic medicine, to help the patients and do the public health work that is needed, in this epidemic. Legislators can help.

I'm sure the so-called Science-Based Medicine blog group (part of the so-called Skeptics), some of whose jargon hv808ct has adopted, is horrified by this kind of legislation. It would be greatly preferable for the science and medicine to "correct itself," as science is widely supposed to do. But in the LD field, the dominant group shows no sign of correcting itself. Just read Henry's and hv808ct's posts. Again, I would greatly prefer that medicine and science correct themselves; but in the LD field, it's not going to happen, without a lot of outside pressure from the general populace that is being harmed. And maybe not even then, during the lifetimes of the academics who are currently dominating the field. The dominant academics are lost, deep within a group illusion.
"I have to understand the world, you see."
Richard Feynman

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ChronicLyme19
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by ChronicLyme19 » Sun 21 Dec 2014 17:44

I think the reason it passed unanimously in NY is because it's such a HUGE problem in the Hudson Valley, to the point there are enough politicians' families and friends that have been directly affected. Everyone knows someone who has been crippled and is out of work because they have gone untreated so long. I have multiple coworkers that catch it every year or someone in their family does. They know I've had a bad case and they come asking me what to do because the primary care doctors are still clueless despite the epidemic. They want to know where to go to get the right treatment. Community groups are popping up to help people get to the right doctors.

Posted edited for grammar and spelling - it's been a rough week on the brain.
Last edited by ChronicLyme19 on Wed 24 Dec 2014 2:39, edited 1 time in total.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by velvetmagnetta » Mon 22 Dec 2014 7:48

But who are the "right doctors"?

MDs, LLMDs, IDs?

Has anyone on here actually been cured?

Lorima
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by Lorima » Mon 22 Dec 2014 23:59

Well, my family patient "A" has been in remission for more than a year with no antibiotics, after several years of re-treating each relapse with combination oral antibiotics. But I'm not considering this a "cure", necessarily. The trick seems to be to jump on any recurrence of the patient's specific sentinel symptoms (in this case a distinctive kind of bilateral hip pain, which is followed within a couple of weeks by neuro symptoms if not treated) with immediate antibiotic treatment.

Patient "B", who took a lot of prednisone for a facial palsy at the beginning, without antibiotics, because of a negative Lyme ELISA, isn't as well, but is working full time doing science, supervising 25 people, and walking 20,000 steps a day every day. (I guess you could regard that as a neurocognitive symtom: OCD. But he's always been like that. ;)) That's pretty good, for a late LD patient. This patient B has a residual neuropathy of the hands and feet (pain upon pressure), sleep disturbances, and some persistently sore ligaments and tendons, plus some fairly subtle (to observers) memory and word-finding difficulties. But no more seizures, panic attacks, crippling pain, getting lost, headaches, balance problems. This patient is now taking combination oral antibiotics every other month, after years of taking them constantly.

No antibiotic side effects have been experienced by either patient, in seven years of treatment, though of course it could arise at any time. Neither patient wanted intravenous treatment, as it seemed from the literature that IV wasn't all that likely to produce a cure, in patients at such a late stage (many years after infection). At least not in a reasonable amount of time, like a few months. Orals are quite cheap, convenient, and safe.

This is an empiric approach. Patient B takes a few supplements (niacinimide, ubiquinol, ribose, daily multivitamin. Patient A takes only a daily multivitamin and mineral.

All antibiotics are taken along with Nystatin and probiotics (spaced away from the antibiotics).

This treatment is carried out in collaboration with an LLMD (who prescribes the drugs and sends out for Western blots every once in a while), and a couple of primary care MDs, one who is aware of the controversy and is sympathetic, and one who is aware of the LLMD treatment but is willing to ignore it, and take care of other routine medical matters.

I don't see how anyone could expect to find an IDSA or regular MD who would do this, except by good luck, which I guess Rita and Duncan had. Here in Boston, I called several random ID docs and neurologists but they all avoid LD like, well, the plague. After I dug into the politics, I could see why.

Fortunately there are a couple of LLMDs nearby who are very smart, don't have celebrity status, don't overcharge, and don't insist on new-age-y supplements or devices. Insurance has readily covered the oral antibiotics, so the whole thing has been cheap. A lot cheaper than symptomatic treatment like pain meds, Lyrica, etc. would have been for the insurance company, I would guess. And perhaps more effective, with less side effects.

So, maybe there has been no cure. But there has been effective treatment and high quality of life achieved.
"I have to understand the world, you see."
Richard Feynman

RitaA
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by RitaA » Tue 23 Dec 2014 4:05

velvetmagnetta wrote:But who are the "right doctors"?

MDs, LLMDs, IDs?

Has anyone on here actually been cured?
Lorima wrote:I don't see how anyone could expect to find an IDSA or regular MD who would do this, except by good luck, which I guess Rita and Duncan had.
Lorima is correct in mentioning that I was lucky (make that extremely fortunate) to be referred by my neurologist to an ID specialist who treated me with a longer course of antibiotics and at a higher dose than recommended in the IDSA guidelines. Although the ID specialist no longer accepts Lyme disease patients (after threats or at least pressure by the Ontario College of Physicians and Surgeons), he is still considered one of the best diagnosticians in the city. In fact, other internists routinely refer patients to him when they can't figure things out.

Do I consider myself cured of active Lyme disease? Yes, I do. That said, I continue to struggle with a few residual health challenges that my neurologist chalks up to permanent damage caused by the infection being undiagnosed and untreated for so long.

I haven't been prescribed antibiotics for Lyme disease in over 2 years, and my general health has actually improved during these past 2 years despite the normal aging process. That's good enough for me -- and especially after almost a decade of my health declining for reasons that no doctor could accurately pinpoint prior to my referral to an ID specialist.

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ChronicLyme19
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Re: NY Governor Cuomo Signs Lyme Bill...

Post by ChronicLyme19 » Wed 24 Dec 2014 2:46

Ok, well maybe "right" isn't the best word choice, but there are definitely wrong doctors. I can list 10-15 in my area who are clueless about Lyme/TBD or just refuse to treat it.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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