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
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
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.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
There are a few good docs in CT if she can travel a bit...
Posts: 183 | From ... | Registered: Oct 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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!
Posts: 3771 | From around | Registered: Mar 2008
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posted
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.
Posts: 3 | From LI , New York | Registered: Aug 2012
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posted
Thank you, Lymenet members!! You did a great job!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
JJML - Sent PM of the NY list, including contact for Dr. C. Sure hope you get help soon!
Nice work Lymetoo.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
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!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
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