posted
Can you copy and paste this over to Medical Questions? You'll get more responses over there... and this is a medical problem!!
BTW, before we go any further... It's LYME, not lymes.
I wouldn't be surprised AT ALL if you've had Lyme all this time... especially since you're in NY!!
Read my story below. We have quite a few similarities in our illnesses!
I'll help you with info on drs.
Check your PM!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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daise
Unregistered
posted
Hi Lymetoo!
I'm sorry. Blame me!
I asked her to post this from Seeking A Doctor, over here to the General Forum, because it's here that we have information and other people looking for financial help--she has no money and no insurance and is looking for an LLMD with a good sliding scale.
That's her pressing concern.
Thanks!
-------------
Amanda: Certainly, anytime, you can post questions under Medical Forum. Since you and Lymetoo have very similar signs and symptoms, I'd say you've made a good friend, right off!
Thank you for breaking up paragraphs! It is appreciated.
I'm glad you found us!
Nine years is a long time to be ill with Lyme. I'm sorry you have had to go through all of your pain and frustration--and for that long.
I want to fish the fact that you need financial / insurance assistance, here in the General Forum. Maybe someone from New York will jump in with ideas.
First, BettyG left you a message under one of your Seeking A Doctor posts. She will be happy to PM you with free information for newbies.
When it's on your computer, it is searchable! That includes insurance and financial; and SSDI and SSI information. Go here:
Here is what I've copied from one of your threads at Seeking A Doctor:
__________
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!
_________
Lets get financial information to you. Then I think it would be wise to copy your above health information onto a new thread in the Medical Forum.
Recently someone posted here from New York and she was poor and young, like you, as well. In the event it will help you, here is the link to Tabby's thread--please take a look at the whole thread, as something may help:
Are you on SSDI? You might think about it seriously, due to your financial situation. One thing you can do right away is to file for SSI--and that's not as much as SSDI, but it's something and it's faster!
Along with that, you ought to get Medicaid. In the meantime, you can file for SSDI--that takes typically 1-3 years and if you win, you'll get Medicare.
If you won't be applying for SSI, then you have no insurance right now. Have you tried for state Medicaid? IDEA: Find a few people with Lyme close to where you live in New York who have or had received state Medicaid, and ask for their tips and hints.
To find these other Lymies, you might contact a support group. Go to the top of any page, to the leafy menu on the left and click "Support Groups."
Let them know that you are poor. No insurance. No job. Ask for their help. They ought to have ideas concerning assistance in your state.
Are you a veteran? Or, if you are married, is your husband? Please let me know!
As far as getting a doctor to help you, you will need an LLMD (Lyme-literate MD) who is also an ILADS doctor. There are many in New York!
Names are being sent your way. You might ask at your support group for opinions. Let them know what type of LLMD you will feel comfortable with.
Many LLMD's don't or can't take insurance. But the meds they prescribe may be covered by Prescription Hope--see the link in the information for Tabby.
Does New York state have a medication program for the poor? Call your state health department.
For general medical, legal and financial assistance, try your public library: ask if they have an annual guide for disabled people or for caregivers. There might be a lot of help if they have booklets like that.
You have to reach out! Maybe you've been doing that, but continue to reach out!
Lyme disease is a clinical diagnosis.
After you've had signs and symptoms for a year it is technically termed neuroborreliosis, a brain infection of the Lyme pathogen. After that, signs and symptoms are individual to the patient.
For essential Lyme information, go to www.ilads.org and on the left menu click "Treatment Guidelines" which takes you to the ILADS Guideliens and below that, Dr. Burrascano's 33 pages of tips for 2005. Print!
In this there is a ton of information on Lyme, plus supportive supplements and exercise information.
Treatment typically takes 1-3 years and very often more, especially since you've had Lyme for nine years.
You'll need to know about the politics of Lyme.
It is quite rare that an infectious disease doctor will help you. They are represented by IDSA (Infectious Disease Society of America) and they push that chronic Lyme Disease does not exist.
Connecticut Attorney General Blumenthal just settled an investigation of IDSA members who had formed their IDSA Guidelines for Lyme disease.
The guidelines were found to be fraudulent due to the conflicts of interests of the panel members who formed the rotten guidelines which call for only 3 or 4 weeks of an antibiotic and then you--the "stick patient"--must be cured. HA!
We have two bills in Congress, one in the House (Bill HR 741) in a committee who's chairman is representative Pallone. He doesn't want the Lyme bill brought up for a hearing.
Senator Kennedy is chairman of the Senate committee for Bill S 1708.
The bills provide funding to alert and educate doctors, alert and educate citizens, provide money for research and funds to develop a better testing method.
We're asking that people please call and email or fax a letter, trying to get our our two Lyme bills passed.
Good book: Coping With Lyme Disease, by Denise Lang and Kenneth Leigner MD.
Recently published, and may be a comfort to you, as you could relate to their stories in trying to get correctly diagnosed: It's All In Your Head, Book 1 is the neurophsyciatric manifestations of Lyme.
You mentioned you are bi-polar.
Book 2 has 80 patient Lyme stories written by the patients themselves!
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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posted
I just hope the dr you picked comes highly recommended by "happy satisfied customers!"
If so, things will be fine!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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daise
Unregistered
posted
Howdy Amanda!
Well ... ya, it's not "Lymes," but I guess you got the harsh treatment. Maybe it's because chronic Lyme is not recognized as being an illness.
But I'd say maybe that poster was having Lyme rage, or whatever. That happens.
________
Are you OK troutscout? Hang-in there. OK?
________
Amanda,
You have to give allllllll of your blood away? You didn't say your LLMD was a vampire. Squirrel some of it away in a stash for yourself, OK?
You have your appointment with a real, live LLMD and it's tomorrow at 10 AM. Good for you! That's the fastest time for an appointment I ever heard of!
I hope you feel comfortable with him or her and that your visit will be productive.
quote: You wrote:
My favorite diagnosis' were "hypochondriac" and "because I am getting older." Mind you, I am only 28!
I am so excited not to feel crazy and like I am losing my mind!
That could only come from what we call a duck. Quack!
I believe what you're saying. Anyone here would. But wait--didn't any duck tell you that you were only seeking attention?
I know! You gave us your paraphrased version.
It's OK to rant here about Dumb Ducks. That's perfectly fine. Everybody can relate!
You said that you were still worried that you wouldn't get adequate treatment again. Many know what you mean, from their past trials on their journey into trying to self-diagnose what they might have.
Have you reasonably checked-out the LLMD? If so, then relax and enjoy your visit. I was clinically diagnosed, having tested negative for Lyme 3 times by western blot (and later, again.)
I'm glad I remembered my bulls-eye rash over a decade before that.
Treatment has very much helped me and there are more antibiotics to come. I also tested negative for bartonella and babesia. But I have both.
You asked for readers of this thread to cross their fingers for you tomorrow. OK. Will do!
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