Disability questions, plz help...

Discussion in 'Lyme Disease Archives' started by Kimelia, Dec 30, 2006.

  1. Kimelia

    Kimelia New Member


    I'm very ill. Having trouble sitting up for long, get major stomach cramping after 2-3 hours. Trouble walking. I was diagnosed with cfs/fibro, neurally mediated hypotension(heart stopped). Now I found out I've probably had lymes the past 16 years.

    Can you claim disability for lyme? How long on average does it take to win if so?

    I do not have enough money in social security to get social security benefits, isn't there another form of disability I can apply for and perhaps even work a few hours a week on top of that?

    Any info would be extremely helpful and appreciated. I'm struggling to work just 4-8 hours a week and really nervous about how I'm goign to continue to work and survive.

    Thanks for the information...
  2. hopeful4

    hopeful4 New Member

    Do you have any kind of disability insurance, either through your employer, or privately?

    If not, have you considered applying for aid such as food stamps or Medicaid? Can you contact your local social and health services dept. for suggestions on what you may be eligible to apply for? Can you call your local crisis hotline for possible resources?

    Are you sure that you don't have enough money to get social security disability benefits? Have you contacted an attorney specializing in SSD?

    I really sympathize with your situation. Our government isn't very well set up to support people with serious illness. Just at the time when we are unable to take care of ourselves, we must endure the stresses of scrambling to survive.

    Best wishes,
  3. victoria

    victoria New Member

    If you haven't worked enough quarters to qualify for SS Disability (SSD) and you don't have over a certain $ amount of assets, you can apply for SS Insurance (SSI) - it is for those who have not worked enough quarters or not worked at all, but with SSI they will look at your assets unfortunately. You're allowed to own a car, etc., as long as it's not outlandishly valuable I believe.

    If you go to the governments social security site, you will be able to read about it there. You can also fill out the form there online at your leisure or print it off and fill it out by hand; and then do a phone interview with that in hand if you cannot go in personally.

    It's also helpful if you have all your doctors' notes & narrative reports yourself to give them, altho they will request them from the doctors. Narrative reports are the best.

    Getting them yourself also allows YOU to review what's in your files, as you may be surprised to find mistakes. (For instance, one lady I know got a copy of her doctor's notes that said her husband beat her, which was untrue.)

    Lyme can be an 'invisible' disease, ie, you may not 'look' as sick as you are, in which case you may not want to go in. I acted as my son's rep, thankfully, as the SS interviewer said her SIL had lyme but 'had to work' as if one could if one wanted to!?! NOT a good sign...

    There is also info about benefits down the line, but you can't apply unless you expect to be out of work for a year or more. After that you can legally make up to about $700 without losing your SSI, plus there are other programs you can look at then.

    You will sadly be probably denied the first time you apply, usually within 4-6 months... until then you won't get Medicaid (if you're only qualified for SSI). As soon as my son was denied he was issued a Medicaid card. Until then no RX assistance program would help at all with his abx since they said he was eligible for Medicaid, so there is a black hole there where it's difficult to get care of any kind.

    Younger people tend to be turned down the fastest. I've also been told, politically speaking, that the 'powers that be' don't want lyme to show up on the record south of the mason-dixon line.

    So I'm curious, did you show up as positive according to the CDC standards? And did your doctor report your case I hope? Altho he may not... LLMDs of all kinds are having a difficult time, treatment of chronic lyme has unfortunately turned into a real political battleground.

    Sorry to ramble on so... hope some of this is of help to you.

    All the best,

    [This Message was Edited on 12/30/2006]
  4. Kimelia

    Kimelia New Member


    Wow!!! Great information. IT's late but I want to try to reply. If I forget to answer something please msg me again.

    My doctor sent the blood to the lab that showed me at 1:32 for lyme. I spoke to the head guy at the lab who told me that my numbers were significant and that my symptoms were most likely due to lyme. Bowen Research is the lab that did it. IT is supposed to be the most accurate test up to date but i do not believe the cdc backs this testing due to funding I guess. Apparently the lab is releasing a test in january that the cdc will back and not only that but it is the daddy of lyme tests. I wish I understood the details but you can probably look into it if you search for bowen research. If you want their number let me know. Can I post it here?

    I don't know anything else about the new test.

    Sorry if this post is lacking but i dont feel well. I'm up so past my bedtime, doh. I fear i will pay for it tomorrow :(

    [This Message was Edited on 12/31/2006]
  5. victoria

    victoria New Member

    The Bowen test is not recognized officially, you are right; and 'probabilities' are not reported to the state.

    I hope that is true Bowen is coming out with one that will be recognized or that the decision is to be reversed very soon! If you have any other type of testing done, be sure to get the Western Blot and get it done by Igenex Labs (Quest can draw it and send it to them).