Anyone successful getting SSI/D with Lyme?

Discussion in 'Lyme Disease Archives' started by victoria, Jan 27, 2007.

  1. victoria

    victoria New Member

    Just wondering if anyone here has firsthand knowledge/experience, as my son got turned down again, next step will the the court hearing, whenever that might get scheduled... we already have an experienced attorney, but I know he hasn't dealt with lyme as a reason.

    I will be checking some of the other sites as to what else I might be able to get /need to get in in his files;

    Even tho his doctors' supported him, he was denied anyway... pretty much par for the course unfortunately from what I've been told, especially when the person is 19 yo.

  2. mollystwin

    mollystwin New Member

    My sis will be applying for SSID soon for Lyme.

    Are you aware of Public law 107-116? It was signed by President Bush on 1/10/02. One of the things it addresses is Lyme disease. The Law has a paragraph addressing the Social Security Administration and getting assistance for Lyme disease.

    Some wording from the law"

    "SSA is encouraged to work on developing educational materials for the SSA employees to facilitate a better understanding of the potential debilitating effects fo these disorders. The committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities to accomplish this goal."

    Do a search on law 107-116 and Lyme and you'll get tons of info on this.
  3. victoria

    victoria New Member

    No I wasn't aware of that, that's good if it actually means something. Let's hope it does!!! If I find out anything more that is helpful, I'll let you know too...

  4. hopeful4

    hopeful4 New Member

    Hi Victoria,
    A little bit of a long story, I'll try to get to the point! Yes, I was successful, but it came in a roundabout way.

    When I originally applied for SSD, I didn't know I had Lyme. I had a CFS diagnosis at that time. My original application was denied (that's what usually happens the first time).

    I appealed with the help of an attorney and went to a hearing. I received a "partial" award which dated back to a diagnosis of "depression/adjustment disorder" (2002). I had claimed CFS dating back to 2000, but only had naturopathic doctors, which the Feds don't recognize.

    I began receiving benefits in 2004, and a back award; yes, it took awhile! I also appealed the partial award.

    By the time my case got to the hearing (September 2006), I had been diagnosed with Lyme Disease (December 2005). My doctor (from the FFC) wrote an excellent letter, explaining how the Lyme Disease was consistent with the CFS symptoms and diagnosis.

    Bottom line: I got the award backdated to 2000, which I had claimed as date of onset. Although the judge did not have an actual code for Lyme Disease, he used one for immune dysfunction or immune deficiency.

    At the first hearing, the "medical expert" was a total non-believer in CFS, and did not even believe the CDC diagnostic criteria! The judge became very irritated with him!

    At the second hearing, the medical expert was very impressed with my doctor's assessment, and basically won the judge (same judge) over very quickly.

    I'm not sure what your situation is, but feel that if you could have something written up by your son's doctor that was very thorough, and explained how the Lyme Disease affects his health and ability to function, this could be of great help in his case.

    With respect to your attorney, is he willing to understand or read some info on Lyme? Does he specialize in SSD? If he can link the illness to the symptoms and disabilities it causes, that would be very important. My attorney was not a lyme expert, but had an awareness of how debilitating it can be. I also provided him with some articles and brochures to read which I found on the internet.

    Hope something in this ramble is of help to you and your son.

    Wishing you and your son the best,
  5. hopeful4

    hopeful4 New Member

    Bump for Victoria
  6. victoria

    victoria New Member

    My son's doctor, who is a LLMD, is in support of his getting SSI, and writes narrative reports every visit...

    but you know how political this whole 'chronic lyme' dx is, and according to those under fire for treating pts with chronic lyme, have said that "whoever/powers that be" do not want any cases dx'd south of the mason-dixon line. Don't know how true this is, but what I've heard repeatedly.

    I was hoping there could be something to get things expedited, but don't think so, esp now since Georgia also has a lot of cases from the Katrina disaster and they've not hired any more judges despite the overload. I suppose even if we hired an 'expert' to testify when there is a hearing, it wouldn't matter.

    A friend in my local support group who has a dx'd mitochondrial defect (had biopsy) = CFIDS said it took her 5 years anyway to ultimately get her SSD. At her final hearing/appeal, the SSD court actually had an 'independent' doctor testifying via videophone who actually supported her. I'm just wondering if that is going to be what it takes ultimately... and seems too 'iffy' for me.

    Well this was 'only' the reconsideration, has only been about a year since he first applied altho it's backdated to his 18th birthday; Our lawyer has been handling SSD/I cases for years, we know him quite well, & he's not surprised at all...

    we've been told by him and everybody that the gov't hates to disable particularly young people, that it is much harder than someone in their 50s for instance, ie, it gets easier to get SSD as you get older. So I guess it will be a long haul ahead.

    I do like hearing everybody's stories - looking for hints, plus optimism!!!!

    all the best,