You said your *long term insurance*-do you mean regular insurance policy--confused cause my *long term insurance* is for care later in life.

There are people on this board that know tons more on the horrors of insurance-social security-disability issues than I do.

Hang on--someone can advise you.

I just want to tell you not to panic--the dis ease loves that--and stress--it allows the keets to get in a twit and make us feel more miserable.

If you are a praying person, please just let it go for now--turn it over to God for now or whomever your *higher power* is.

Try not to get into a frenzie--somehow things always seem to work out.

Will be thinking of you and add a few prayers for you to have some peace of mind.

Insurance stuff and the like give me ulcers- learned a long time ago to ask others for help when couldn't help myself.

Be patient. That person will come along--a friend--a family member and/or some experienced Lymies.

Hang in there !!!

Chocolat--just went back to your post-see! someone came as I was typing - and noticed you mentioned waiting for a miracle--so there! They do happen. Blessings.

First, a big hug to you. I know from personal experience what a horrible shock this is. When it happened to us -- first my husband, then me -- I truly thought I'd pass out when I got the call.

Second -- you can really start to doubt yourself when this happens, and feel like a loser hypochondriac. This will make the insurance company very happy -- in fact, they count on this. Know that this has happened to many many people. It has nothing to do with how sick you are, reasonable medical judgement, or proper care, and everything to do with the profit margin. Insurance companies absolutely count on you giving up -- very few people actually take their appeals all the way through to the end.

We fought and are still fighting. My husband has the strongest case, simply because we kept better records for him, and the lawyer is confident that he'll win.

In the mean time, continue with your social security application. You may well get that, even if LTD turns you down.

There are sites that help out with meds -- needymeds.com and some others. They might be able to help you.

There's wonderful info at
Disability resources and information

You have a window of 30 days -- maybe 45 -- to send in your first appeal. They'll may tell you at the end of their review period (usually 45 days)that you're denied again (they always wait until the last possible date). So you send in your second appeal. Then, if necessary, you go to court.

1)Lawyers don't usually get involved until you've received your final termination notice from the insurance company, but they can still help you get set up to fight. Find a lawyer who is experienced in the type of disability you'll be fighting for. It varies between companies that are self insured and those that are not. I don't understand the complexities, but my lawyer did.

Also, if your lawyer isn't willing to spend serious time with you, drop him or her and move on. Our guy has consulted with me free of charge on the phone; spent over an hour with us gathering information, and contacted other lawyers experienced in Lyme.

2) Get good documentation from your doctor identifying your medical history, everything that supports your diagnosis, and your disabilities. Disabilities MUST BE FUNCTIONAL AND CLEARLY STATED. Things like, cannot walk for more than 20 minutes without experiencing severe breathlessness and nausea, and so on. I wrote the letter for my doctor and gave it to him on disk; he revised it as he saw fit, put it on his letterhead, and signed it.

3)Get all your tests together, and your lists of medication.

4)Print out documentation about Lyme disease and all the aspects of it that relate to you. If you don't have this stuff, let me know -- I know lots of links!

5)The following are good documents to submit with your appeal.

Completing Disability Forms

Critical Steps to Winning Disability Claims

6) Keep copies of EVERYTHING and send everything by receipted mail. I can't tell you how many times the ins. co. has told me "we didn't receive that" and I have said yes, I have your signature that you received it. Oh, by golly, silly us, we did receive it!

Hang in there.

I'm editing this to say that when you send in your appeal, clearly state in the subject line that it's an appeal for the denial of LTD, and your name and ss number. List all the documentation that you are submitting. Follow up 2 weeks later with a phone call to be sure they are processing it, and keep a record of that. Don't underestimate how badly the insurance companies are willing to behave. When I did my follow up call a month after submitting my appeal, they said,

- Oh, we're not processing the information because you have to send us a written letter stating that you're appealing.

So I said, you mean like the letter that has the subject line, Appeal of Denial of LTD, My Name, My Social Security number?

And they said, and I am not kidding, Dear me, I thought that was a note from the doctor. We filed it with his information.

And they got to put off the review for another 45 days....

Also, this is very upsetting stuff to get through, and very tiring. So if at all possible, have someone help you pull it together, write the letter, and do the copying etc.

karen

One thing that is VERY important with trying to get disability from the SSA, is:

IT is not necessarily the disease that you have that they decide disability on. IT IS WHAT THE SYMPTOMS OF THAT DISEASE DOES TO YOU THAT PREVENTS YOU FROM WORKING.

So, my very best advice to you, document any and all symptoms and what the symptoms are preventing you from doing....those day-to-day things. Expound on the things you cannot do and you should be able to get it eventually.

Getting approval from SSA can be and often is a very long process...can take years rather than months.

My experience...I applied in April of 2000 and finally got my first check from SSD in December 2003. It took me that long...long story as to why. Very good that you have an attorney.

I have been on long term disability for Lyme for 8 years and if you have not already done so I would try to have your claims rep get to know you as a person over the phone. It's important to find out exactly what documentation they require from your LLMD and how often. I try to always reply by return mail or phone to any correspondance they send me. This way your case is always well documented and up to date.

Another suggestion I have for you current situation would be to contact the insurance commissioner for the state of New York and find out how to file a complaint for unfair denial. Also, I would suggest contacting your state rep. and ask his or her staffers to advocate for you. Tell them exactly who they should call to help you and follow up your request in writing. If your ins. company is out of state, then complain to their state insurance commissioner and your local state rep.

I know this is a lot of work. On the other hand, if you have to get a lawyer, it could be very expensive.

I hope that you can prevail in this.

Sorry you are having to do this. To me it looks like having Lyme means you have to get a PhD in infectious disease AND insurance management at the same time your whole body is coming apart!

Hope these help.

Lymeinfo Files
Lots of medical referrences on symptoms, seronegativity, and persistence.