I'm not sure who to send her to, since she needs someone right away.
Advice please!!
Posted by Lymetoo (Member # 743) on :
here is her post in seeking....
++++++++++
Hi all! I am 30 year old female from long island who currently undergoing my second round of lyme treatment.
The first time I was 26 and was treated my oral antibiotics that did not help, therefore was put on a midline, Rocephin for 28 days.
Doctor wanted more but, of course, insurance would not pay. This time arround my symptoms are so much incredibly worse. At the risk of sounding super dramatic, somedays I feel I am dying.
Anyway, the point of this message is that this time, after 2 months of oral antibiotics, I was given a PICC line while in the hospital for a week, and I am coming to the end of my 28 day treatment.
My primary doc wrote me a script for another 2 weeks but I am not exactly optimistic that it will be covered by insurance. That is where I am now....the waiting game. I should know by tomorrow.
So I am looking for a lyme literate doc somewhere in NY. I feel desperate because I feel once this PICC is taken out of me, my "life line" is no longer available.
And I know I will never get it put back in again, looking back at how hard it was to get it in the first place. So, all I am asking is for a doctor in NY, not a primary doctor, preferrably a Specialist,
who would hopefully be willing to fight for me, because I, along with many medical professionals I have spoken with, seem to think the minimum dosage of treatment is 12 weeks, especially for someone as extremem a case as mine.
If anyone knows of anyone, I would love to hear your experience with LYME and the doctor that you are recommending.
My last dose of meds is this friday, unless insurance covers another 2 weeks. So I consider this a bit of an emergency.
Thank you so much to anyone who reads this post. I wish everyone suffering with this AWFUL disease to hold onto hope and know that you are never alone.
Thanks again for listening. - JJML
Posted by WendyK (Member # 18918) on :
You might want to try to pay out of pocket if need be to keep it going (unless complications from it are why you are in the hospital). You can shop around for lower prices on the meds - there have been several posts on here about that - I think I keep hearing Infuserve America? If its helping, you certainly don't want to stop too early!
I don't have the list of NY doctors to send you - someone else here ought to be able to provide it though.
Good luck, you've come to a great place for support!
Posted by poppy (Member # 5355) on :
With the state medical board after lyme doctors in that state, she is going to run into problems I think, asking them to fight for her when they are fighting to keep their licenses.
Anyone who is not politically active in NY now is taking a chance on having no treatment in the future.
There are now no lyme doctors in Canada. They were taken out one by one. That can happen in most states in the U.S.
Posted by Lymetoo (Member # 743) on :
Which state next? She's on Long Island.
Posted by Talktel (Member # 7980) on :
What about Dr.C in NY.
You could get into him right away, and if I'm not mistaken, he has an IV room.
Maybe she could at least start with him
Posted by gagamooppop (Member # 34314) on :
There are a few good docs in CT if she can travel a bit...
Posted by Rumigirl (Member # 15091) on :
JJML, please PM me, as I can help you in terms of drs and ways to keep getting IV. I can also put you in touch with a very active NYC Lyme Support Group, as well as Long Island Lyme Groups. In order to PM me (Private Message), click on the icon of 2 people with an envelope at the top of this post. Then, I'll reply privately.
There is lots you can do to keep your PICC line in and keep getting IV. Obviously, you need to act pronto.
I will try to make sure that I have plenty of room in my inbox, but if you are ever not able to get through, due to it being full, say that here, and I'll fix it. In fact people sometimes make a post just about one person's full mailbox!
Oh, and you can check your incoming PM's two ways: click on the link at the top left of the forum posts (I forget what it says exactly), and you will see them and can respond. You can also
opt to get the PM's posted to your email address, so you see them sooner, although you can't respond there, only here.
Help is on the way!
Posted by jjml (Member # 38644) on :
Hi everyone! Thaks for your responses. Wendyk - My current homecare nurse actually recommended Infuserve. I put a call out to them last night but got a voicemail. Waiting for a response. And yes, I am willing to pay some out of pocket but I don't have much. I am willing to take out a loan if I have to. I want and need my full treatment.
Posted by Lymetoo (Member # 743) on :
Thank you, Lymenet members!! You did a great job!!
Posted by Rumigirl (Member # 15091) on :
PM sent with lots of info and contact info. But feel free to add to it, as she clearly needs all the help she can get!
It doesn't get much better than the support that we people with Lyme give each other!! Or people that had Lyme.
Posted by Lymetoo (Member # 743) on :
That's why we need folks to check Seeking a Doctor everyday. See how you can help someone with the wealth of knowledge you have.
Posted by Limeaid (Member # 22357) on :
Hi All,
I was flying out to NY every other month for 2
years to see Dr. C. He is awesome, and will
fight for you. He has a wonderful team of
people that work with him, and they are all
very supportive. He is always willing to
shake things up if something isn't working.
I would go back to him in a heartbeat if my
symptoms became worse again. Good luck!!
Posted by Lymetoo (Member # 743) on :
Thank you, Limeaid!
How ya doin'??
Posted by AuntyLynn (Member # 35938) on :
JJML - Sent PM of the NY list, including contact for Dr. C. Sure hope you get help soon!
Nice work Lymetoo.
Posted by AuntyLynn (Member # 35938) on :
Poppy -
That's alarming news!
Here's my guess on that ...
I just found out last week that Massachusetts finally passed Legislation preventing insurance companies from "coming between a doctor and his patient" just a few months ago. Which means Insurers can't refuse to pay, and can not file charges with State Medical boards when a doc treats Lyme agressively.
Rhode Island has had such a law for quite some time, and I believe Connecticut has one now too.
So they're hitting NEW YORK docs, apparently because its unprotected? We have a word for their kind around here ... schmucks!
Posted by Rumigirl (Member # 15091) on :
JJML, I would strongly advise going to the Lyme support Group meeting that I mentioned and talking to people directly who have been to the various drs, and and who know the scoop on all of them. You can also do that via PM on Lymenet and on the NY Lyme Yahoo list. It is a big, important decision, and you want all the info you can get---not just a little.
NOt to overwhelm you, which I'm sure that you are overwhelmed! Just some friendly advice to get lots of input. And that goes for each step of the way, too, after you start seeing someone, or in prep for the LLMD. No need to learn the hard way.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by AuntyLynn: Poppy -
That's alarming news!
Here's my guess on that ...
I just found out last week that Massachusetts finally passed Legislation preventing insurance companies from "coming between a doctor and his patient" just a few months ago. Which means Insurers can't refuse to pay, and can not file charges with State Medical boards when a doc treats Lyme agressively.
Rhode Island has had such a law for quite some time, and I believe Connecticut has one now too.
So they're hitting NEW YORK docs, apparently because its unprotected? We have a word for their kind around here ... schmucks!
NY state has had an "agreement" (I forget the official term) since around '05 about not going after LLMD's. But it's not a law per se. And now they are flouting that apparently over the last 2 years or so. I noticed a steep chilling effect beginning 2 years ago, when the docs became more afraid of aggressive treatment.
It's going to take lots of work to change this.
Posted by Robin123 (Member # 9197) on :
Is NY Rep Chuck Schumer still around? I know he had it...
Posted by YinYang (Member # 36358) on :
AuntyLynn - do you have any more info on the MA legislation? A Google search came up dry for me.
Feel free to PM me if you prefer not to muck up this thread.
Posted by Talktel (Member # 7980) on :
that explains why- and I know of- certain NY docs, who used to treat Lyme aggresivly stopped doing so.
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