posted
Hello everyone. I am new here and posted in another topic. So I am placing the same one under a new topic.
I have been dealing with the VA since 99. Before that, it was the Army docs. I have already sucumb to the realization I will NOT be getting ANY HELP FROM THE VA!!!
After being diagnosed with Fibro in 96 at Walter Reed, it has been a downhill battle. Don't get me started on the Fibro diagnosis. I flat out told a doc once that " It was a lame diagnosis because THEY couldn't figure out the REAL ONE"! Much less take the time out to research anything. They don't care unless it is happening to them or a loved one!!!!
As time progressed my health has drastically declined. I know I have Chronic Lyme. There are days I can barely dress myself. Due to the fact that I can barely lift my arms without being in horriffic pain.
I have insomia, nightsweats, muscle twitches, painful neuralgias, heart palpitations, jitters and many , many more ailments.
Tinitus has gotten so bad that I have hearing loss in my left ear. I am now the proud owner of hearing aids.
My bone (Tscore) in my L1-4 was sitting at -2.3 two years ago. Osteoporosis starts at -2.5!!! Not one of my docs wanted to put me on Fosomax. Not even Endo. I just turned 39 this Feb. and I feel like I am 80!
There are days when my headaches and neck pain are so bad that I have to go to the ER. I do nothing but throw up all day. Headaches will last up to 4 days. Neck pain feels like it is deep in the bone. It makes my neck so stiff that I can't even move it.
Other days I am so Fatigued that I can barely even get out of bed. Sometimes I don't. Or days I can't even make it upstairs to the second floor of my house. It's too exhausting for me.
I've seen three different Rheumo's with the VA since 99. No HELP there. SHOCKER! Finally got a PCP that ran the ELISA and Western Blot for me this past Jan. 08.
My ELISA was neg. but the West Blot was pos. My Rheumo told me that he was stumped. Even the Chief of Rheumo said they had never had a case of Lyme and weren't sure what to do. Well, that's NO help to me.
Wrote a consult for me to see Infectious control. Didn't hear anything and it was into May. I called him back and was told that Inf. Control was not going to see me. Said I was far from having it. Gee, nice of someone to call me back to let me know.
I told him that the labs are inconclusive. I have ALL the signs of Lyme and or Chronic Lyme. Not to mention the fact that I was bitten at Ft. Bragg. I was also stationed at Landstuhl,Ge in 94. I ran the trails and mountain biked on a daily basis. Didn't want to hear it.
Stars and Stripes put out an Alert to soldiers in Europe last year for Lyme and tick borne diseases. They actually have a research center set up at LAMRC, Ge.
I need help fast before things take a turn for the worst. It that is even possible.... Thank you for any help or advice. zephyr
Posts: 109 | From San Antonio,Tx | Registered: May 2008
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P.S. Also, Nora: BettyG is asking if you want her newbie info--free--sent by PM. You can put this on your computer and then it is searchable! She posted the information here, under a thread in this "Seeking A Doctor" forum:
nora, on your posts YOU started, please make sure you went to lower LEFT CORNER and marked the box for ALL REPLIES TO COME TO YOUR EMAIL!
to do this, go to each of your 1st posts that you started, click PAPER/PENCIL and then go to lower left hand side. look to see if there is a CHECKMARK in the box that replies will go to you!!
to find your other posts, daise has shown your links above; do the same thing there so you don't miss out on valuable feedback to you ok.
daise's watching your back good, and keeping you informed!! KUDOS DAISE!
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posted
Oh man, do i know how you feel! I tested pos for lymes in 98, was treated (if you can even call 30 days of amoxicillin treatment) and when I was still having symptoms months after, i was diagnosed with Lupus! so as I entered my 10th year of treatment for the wrong disease, i finally tested pos for lymes again about a week ago.
I thought for a long time that i was losing my mind or that i would be sick forever. every time i went for a lupus check-up, i had them run a lymes test but every single one came back neg. i have come to discover that it wasnt because i didnt have the test, it was because they were running the wrong ones.
remember that doctors are scientists and scientists often need concrete proof before they will act. you need to find a doc that thinks outside the box.
Dont have them test you for lymes antibodies because after so long, you may not be producing them or they may be undetectable. i have heard horror stories of people going ages with the disease but because ONE blood test comes back normal, they are dismissed.
Be persistent and dont take no for an answer. research all of the possible tests that can be done and and TELL, dont ask, your doc to run them.
I was diagnosed as a hypochondriac once and 3 yrs later, it was discovered i had lymes the whole time. it is by far the most frustrating disease because of how hard it is to diagnose. sometimes you just need to be your own army and fight for what you know is going on. no one knows you better than you and if YOU know there is something wrong, then there probably is.
just because some people have MD after their name, doesnt always mean they are the expert. BECOME YOUR OWN EXPERT!!!
Posts: 8 | From new york | Registered: May 2008
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daise
Unregistered
posted
Hi Amanda66,
Welcome!
You've been ill about a decade and I hear you!
What's happened to you is wrong. You're in good company, on this board. Here, we call them "ducks," as in "quack!" I don't even have to tell you who I am referring to--you know. And I don't have to tell you that that is actually a nice name for them!
Then there is ...
Yes, you need help from a good doctor. I hear you!
I just noticed your other thread, under this same forum. That's fine!
May I make a suggestion? Please go to near the top of this page and click "forum home." Then, click "General Forum." You could post a new thread there, using your words from your post, above--just copy and paste your words. That's a place where many others will see it.
Maybe someone will have an idea for you to get care, seeing that you have no money and no insurance and no job. I've been there. Yup. I have ideas that may help you, as well.
Also on that same new thread, you could post your words that are close by in another thread. To make it easy for you, I copied your words here:
___________
I live in NY and due to recent test results, it is suspected I have had Lymes Disease for the past 9 years. I have no health insurance, no job, and desperately need treatment. Does anyone know of a doctor who will either treat on a sliding scale, or free? I will travel as far as necessary. I just dont want to spend money on 20 different doctors and 20 different medications. I would love someone who knows what they are doing so I dont end up wasting money. Of course, I will spend what I have to to get better but anyone who has seen numerous docs for any reason knows that plenty of them can be a complete waste of time....that may be why I have been living with this disease for so long and it was only recently discovered. Please help me if you can. Thanks!
_____________
We ask that you please break-up paragraphs to 1, 2, 3 or 4 lines (small paragraphs) as some of us have Lyme eye problems. It can hurt in our Lyme heads to read a big paragraph--so we don't!
Thank you, Amanda.
We'll put our heads together for you.
Also, BettyG can send a ton of information via private message, to you. This you can put on your computer and it's searchable!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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