I just lost my LLMD for the FOURTH time with NO warning whatsoever. Left with no doctor, no treatment, no appointment, no refills of rx's, no advice, no nothing.
Each time it has happened, it has been for complicated reasons, but all having to do with the incredible pressure on these doctors.
The only reason I am posting this now is as a warning: If everyone doesn't do an all out effort on the NY State Lyme Doctor Protection bill----and all the other advocacy, this will happen to you sooner or later.
IS THIS WHAT WE WANT TO INHERIT?? I don't think so. Please, pull out all the stops now.
Posted by poppy (Member # 5355) on :
I know who your doctor is and am VERY worried that the governor is not signing the legislation.
Patient activism should have been involved from the very start of this latest persecution, not so late.
If NY docs are taken out, this is going to have serious consequences all over the country. Not to mention many thousands of patients left without doctors in NY and where ever else those patients came from to see NY docs.
Posted by Rumigirl (Member # 15091) on :
It's unreal how bad it is. People (even us on LN) don't totally get it, if it hasn't happened to them or someone they know. I have been through this FOUR times already!!
I know more about TBD's than anyone I know, more even than most LLMD's (even than many of the "biggies"). I fight harder than anyone I know. So, if it is this bad for me, what about for people who are less educated, and less willing or able to fight this??
In the witch-hunt on the NY LLMD's, for some unexplained reason, their lawyers were saying for a long time that they didn't want the patients involved in the fight. Why???
But we have also been fighting for this bill for years. It was a major miracle that it passed the State Senate, which was completely against it. But it did pass by a wide margin. So this is huge.
But now Wormser and his lot have been heavily lobbying the governor NOT to pass it----both the State Medical Association, and the IDSA guys, which are really all the same guys. Guess who has the money to pay into the governor's campaign fund---they do!
It is looking really bad right now. Only 1,555 people (approximately) sent in the automated letters, as of last Thursday. Not nearly enough!!!
I am at my wits end. These anti-Lyme guys are tightening the noose tighter and tighter. Not only is it the docs, but now the big push where Wormser, et al are saying that all these Tick-Borne Disease tests, like PCR, of course, the culture test, and many, many others, are not accurate and are false positives----with zero back-up for their claims!
Plus, their saying that NONE of these disease can be chronic. Well, look up all their prior research on PubMed, which shows the complete opposite. They know the truth. It just doesn't make them the billions that these lies will make for them.
Well, my insurance company already has it written into their Lyme policy on their website (Aetna), saying that these tests won't count for treatment, and surely won't be reimbursed either. So, I feel that the noose has been tightened so tight, that I don't know what i am going to do.
And I am NOT in good shape, in spite of 8 years fighting this since I knew what it was, and decades before that fighting it, when no one knew what it was, and I had so many other diagnoses, none of which helped at all.
BTW, I don't think you know who my LLMD was, as I changed to a different, less well-known one last Nov. And this LLMD was not in NY state, but was pressured (indirectly) anyway. Now he is moving out of state, but doesn't even know what state to move to!! Now I've said more than I should, so please don't ask who it was. Anyone who does know who I was seeing, please keep this to yourself, as I promised not to say.
But I am now completely up the creek without a paddle, to put it nicely.
I have to clean out my PM box, sorry, it's full right now. I've been putting all my time and attention into the bill.
Plus, I recently had a horrible fall and injury, resulting in a very major surgery, hospitalization, and rehab stay. It is a very long, difficult recovery from this surgery. Can it get any worse? Of course, it always can, but it had better not.
Posted by poppy (Member # 5355) on :
So sorry about your fall and injury. Seems that when it rains, it pours. You sure didn't need or deserve any more misery.
There are docs in a number of states being attacked by those stinkers. Will we have to have lyme protection laws in every state before this stops? How many lives will be ruined or lost? This is so evil.
I have also lost several lyme docs to the persecution and others were afraid to treat aggressively.
Please clean out your inbox... I did try to send you a pm.
Posted by Rumigirl (Member # 15091) on :
up. still have been focusing on letters/calls to Cuomo. I'm majorly discouraged; in spite of sending out tons of personal emails and posts, only ONE response!!!
People, this ain't gonna do it. We are being buried by the IDSA. What happened to me will soon happen to many others, if we don't fight with everything we've got.
I will clean out my PM box, but this has taken precedence. Plus, I am in major pain and disability from the blasted injury & surgery. Enough already!
Posted by poppy (Member # 5355) on :
When I called, all they did was ask for my zip code, and said it didn't matter that it wasn't in NY. But if you have a NY doc, it should be mentioned, even if you live elsewhere.
Posted by Rumigirl (Member # 15091) on :
Wow, good point, poppy!! So many people come from everywhere to see NY LLMD's. If they can't practice properly, which they haven't been able to for years now, that affects A LOT of people from everywhere else.
Posted by Rumigirl (Member # 15091) on :
up!
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by poppy: When I called, all they did was ask for my zip code, and said it didn't matter that it wasn't in NY. But if you have a NY doc, it should be mentioned, even if you live elsewhere.
Fantastic, I will call (out of state)!
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by Rumigirl:
People, this ain't gonna do it. We are being buried by the IDSA. What happened to me will soon happen to many others, if we don't fight with everything we've got.
Everyone on Lymenet should get on board here. This is like anything else, until it happens to people, which it absolutely can, they just ignore it.
We all have to band together and get involved or they will strip these docs from treating people. If they can get away with it in NY, they will work on each state, one by one.
EVERYONE, please fight. Please call Governor Cuomo. It will take 5 minutes of your time, if that. It's that important.
Rumigirl, so sorry this happened to you again. I will fight. Posted by Catgirl (Member # 31149) on :
So sorry I haven't been to Activism this week.
This was posted by Ellen (below). There is more info in Activism.
Rumigirl your mailbox is full.
Posted by Rumigirl (Member # 15091) on :
Sorry, I know. I haven't had time to fix it. I will get to it this weekend.
Not only have I been spending an extraordinary amount of time on the effort to get Cuomo to sign this bill----which is not bearing much fruit yet, and which is sooo critical.
But as I said, here or elsewhere, I had a fall, a terrible injury, major surgery, hospital and Rehab stay, and now an extremely long, difficult, and painful recovery.
I can hardly sit in any fashion without making it horribly worse, and have exercises I am supposed to do hourly to prevent a blood clot, plus lots of other exercises, PT & OT visits, etc, etc.
Plus, exponentially worse issues with insurance, etc., etc. I am just barely hanging in there at all.
(not to say I won't get to it, but to explain why it is so difficult to get to it).
Posted by beaches (Member # 38251) on :
You have certainly done your fair share and so much more to get this legislation signed.
Now you need to take care if yourself!
Wishing you a speedy recovery.
Posted by KarlaL (Member # 29631) on :
I agree that the pressure on the NYS doctors is hurting patient care. Two years ago, suddenly and without warning, my daughter's NYS LLMD dropped her right after completing IV therapy. She had just been diagnosed with the protomyxzoa rheumatica parasite. He didn't say so directly, but I know her LLMD dropped her because he couldn't risk his practice by treating her for this parasite when Dr. fry has not yet published his considerable research on these biofilm forming organisms. (He will be doing so soon.) We weren't able to find another doctor for months and as a direct result, my daughter relapsed. I realized that this would keep happening unless we went out of NYS to find a doctor.
I was present at a Congressional briefing when a NYS pediatric infectious disease specialist testified that pediatricians are telling her that they are not even testing children that they suspect may have Lyme disease because they don't want to be involved in treatment.
This is part of why I have been working hard to get this bill passed as well. Our NYS LLMDs are some of the most experienced and as such they treat patients and train physicians from all over the world. Many of the NYS LLMDs are also some of the most vocal when it comes to defending the rights of Lyme patients everywhere.
In spite of the opposition, I think that Governor Cuomo is under a lot of pressure to sign this bill. It passed unanimously before both the NYS Assembly and the Senate and it brings into law what the OPMC already says that it is doing, (but we know that they are not). Still we need a lot of people to contact the Governor. We need bring his attention to the fact that the NYS DOH is hurting Lyme patients, not only through the actions of the OPMC, but through NYS DOH sponsored physician training seminars and public seminars which endorsed the IDSA guidelines, and through the denial to NYS residents of alternate testing for B. burgdorferi and many of the other tick-borne co-infections.
PLEASE CONTACT GOVERNOR CUOMO AND TELL HIM THAT WE NEED THIS BILL TO PROTECT OUR NYS LLMDs.
Rumigirl, I agree that the attack on the alternative tests is nothing less than an attack anything that might confirm just how widespread chronic Lyme disease has become. Why are positive PCRs considered diagnostic for every other disease except Lyme disease? Please see Dr. Linden Hu's discussion on the importance of PCR or DNA evidence at the end of the NIH/CDC webinar on Persistence. Dr. Hu makes a very strong case that DNA evidence supports persistent infection, based on how quickly it has been shown through numerous peer-reviewed studies, that the body quickly clears out any foreign DNA. Yet the CDC on its website actually tells physicians not to test their patients for Lyme disease using PCR technology. The video link to the NIH/CDC webinar doesn't work anymore but the transcript and slides are available.
quote:Originally posted by Abxnomore: Rumigirl your mailbox is full.
I finally fixed it. (Although it cost me a whole lot of pain by sitting too much after my blasted surgery! Well, I was also trying to fix the broken link in my emails to everyone I know about writing and calling Governor Cuomo about the NY LLMD protection Bill)/
Posted by KarlaL (Member # 29631) on :
Please show interest in the incredibly important initiatives, endorsed the NYS Senate Lyme Disease Task Force by liking and commenting on this article:
Senate report outlines plan to combat Lyme disease
A Senate Republican task force has released a report on Lyme disease and other tick-borne illnesses in New York state and made reccommendations to combat the problem.
The 14-page report outlines a state action plan to create "improved prevention, diagnosis and treatment protocols in order to better protect New York residents."
The task force is comprised of Co-Chairs Kemp Hannon, R-Garden City; Kenneth LaValle, R-Port Jefferson; Elizabeth Little, R-Queensbury; and David Carlucci, D-Clarkstown. Also serving on the panel are Senators Mark Grisanti, R-Buffalo; Kathleen Marchione, R-Halfmoon; Greg Ball, R-Patterson; and Bill Larkin, R-New Windsor.
Hannon said creating an action plan to take on Lyme and other tick-borne diseases is "essential" for New York. . .
I live out of state. I tried and tried to call. Finally got theough and a few seconds into me speaking they asked 4 zip code. I gave it to them, they said sorry only interested in NYS residnece and hung up.
Any suggestions?
Posted by Abxnomore (Member # 18936) on :
That's terrible but thanks for calling.
Have you filled out this non- NY state resident form?
It's one way of helping out.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by Amanda: I live out of state. I tried and tried to call. Finally got theough and a few seconds into me speaking they asked 4 zip code. I gave it to them, they said sorry only interested in NYS residnece and hung up.
Any suggestions?
That's terrible!!! I guess they got inundated with out of state people calling (which they should). But do write as abxnomore just wrote above.
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