posted
Ok, i've been dealing with a Lyme's relapse for about two years now. I live in Upstate N.Y. but was infected in N.J. I had Lymes Menengitis, was the third person in N.J. to be diagnosed with it. I've been fighting with the doctors for a proper diagnosis since my relapse, but since it's not common up here no avail. I even finally had them redo my blood work which came back positive for anitbodies for Lyme's and my doctor just said "Oh that just means you built up an immunity". I'm like "NO, you cant build an immunity to it that's why you can get reinfected!!" I feel like I'm beating my head against a wall here , and like i'm dealing with idiots . Can anyone give me any advice or help me here, I'm stuck in a wheelchair as a result and I don't want to get any worse.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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ByronSBell 2007
Unregistered
posted
Find a Lyme Doctor
Use Fry Labs to test for co-infections (do the antibody and smear test from them)
If you are in a wheelchair you need IV's it sounds like.
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posted
Hi! I just read your questions. It sucks because no doctors really know a lot about lyme. You have to find a LLMD, or a specialist that knows their stuff. You have to get the right blood work and then be put
on antibiotics. I have neuro-lyme and just changed my doctor. I think there is a list of LLMD's you can pull up on lymenet, and you can see which ones are in your area.I know it's frustrating, but know your
not alone, alot of people have lyme and co-infections. hang in there and good luck!
Posts: 27 | From pa | Registered: Mar 2008
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posted
Thanks. Yeah, that seems to be my big problem, I can't find one out here that my insurance will let me go to. In september I'll be recieving Medicare instead of Medicaid, so hopefully that will work. Problem is, my doctor won't do a referral for a LLMD. He's one of those doctors that are against diagnosing it. I'm trying to find a new doctor, but it's hard being in a wheelchair and being in the middle of nowhere. I'm hoping once I get on Medicare, I can find one that I'll be able to get transportation to.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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posted
Thanks byron, is Fry Labs covered under Medicaid? I love your pic btw, I downloaded it just so you know . I wish I had the doctor I had when I first got it. but she's not practicing anymore, and she's in Jersey. I got really lucky when I had her, she was way in demand and the only reason i got to see her was cause my aunt put her in her book Coping with Lyme's Disease (which she wrote when my cousin got infected). I'm just so frustrated with the doctors up here. I just can't fathom why such skeptisim.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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posted
unfortunately, only LLMDs treat lyme. LLMD is lyme literate MD. all other doctors will just let you continue to deteriorate.
and they dont take insurance. you have to pay for the LLMD. you may be able to get prescriptions paid for.
Posts: 615 | From maryland | Registered: Oct 2007
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posted
It's been so long since I've had to deal with this. When I initially got it 15 yrs ago, there really were no LLMD's, just doctors with a brain and concience we had to fight with the inssurance company for treatment and what not, but my parents didn't have to pay out of pocket for visits. In essence though then I'm screwed cause I can't afford a LLMD then.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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posted
I've got a few PM's from people suggesting looking for a LLMD, I really appreciate it, but unfortuneately (as one of them even said) there are no LLMD's in my area. The Doctors in my area are totally clueless. Just to give you an idea, I went into the hospital 2 years ago, because I felt like I was having a relapse (I was trying to ignore it, hoping it was just my head but my wife was very persistent) The emergency doctor gave me some anitbiodics and drew some blood. Great right. No, a week later my whole left side of my body went week, and I fell straight to the ground when I was getting up to go to work. So, went back to the hospital where I progressivly got worse. Told the doctors, I think I'm having a relapse, well they lost my blood work from before and were going to do it again. I told them they had to wait to get the antibiodics out of my system otherwise they'll get a false negative. No I don't know what i'm talking about they said. Treated me like and idiot. Of course it comes back negative, and they release me 3 mos later saying I have conversion disorder. Finally 4 mos later I get them to redo my bloodwork, it comes back positive for anitbodies for lyme's. My doctor tells me that that is normal cause my body has just built an immmunity to my previous infection of lymes. First of all IF that were true, why didn't that come up in the other test? And secondly, YOU CAN'T BUILD AN IMMUNITY TO LYME'S. Again, I don't know what i'm talking about. I even pulled up research for the hospital doctors, showed them my Aunt's book "Coping With Lyme's Disease" and one of the doctors said to me, "Well maybe you should call your Aunt then". She's not a doctor you are, she's just an author! I've been dealing with this for 15 years, I know my disease, but I feel like i'm educating the doctors here, or at least trying to, it's like teaching to the deaf dumb and blind. I've hit a brick wall and i"m running out of ideas, that's why I posted here, i'm hoping someone who may be going throught the same thing may be able to offer something I haven't thought of. Y'know fresh set of eyes and all that. thank you everyone though, this is an amazing sight, and I can't believe the quick responses and support I've gotten.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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posted
The problem is you need medication and only an LLMD will give you the medication you need. Because of the political battle within the medical field, you will most likely never find an LLMD who will take your insurance.
Also, most of us do not have the luxury to have an LLMD near us. I have to fly from Ohio to NY to see mine.
You can read about Lyme here .... you can read about Lyme treatment in Dr. B's guidelines at www.ilads.org .... but if you want to get better, you will need to see an LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Many people have to travel long distances to get proper treatment. I have a friend in upstate NY who travels downstate to her LLMD.
There are a few LLMD'S who take insurance and Medicare, but they are in the minority. I am lucky to have one who is also nearby.
You really need to go to Seeking Doctor forum to find a LLMD who can treat you. There are some good ones near NYC, from what I hear.
Good luck, and welcome to Lymenet.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
*sigh* yes I know, but again, I can't afford anything not covered by my insurance, let alone travel. Traveling in a wheelchair is tricky when you don't have a car.
My disability just barely covers my living expenses (which my internet/cable/phone is probably going to get turned off soon), and my wife is pregnant right now and hasn't been able to work cause of complications. So yeah I'm screwed until I can afford it.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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