Anyone YET get SSD or SSI with the dx of 'Chronic Lyme"???

Discussion in 'Lyme Disease Archives' started by victoria, Oct 30, 2007.

  1. victoria

    victoria New Member

    just wondering if anyone has...

    as I've read the SS doesn't recognize 'Chronic Lyme' or, for that matter, "Post-Lyme Autoimmune Disease" as the IDSA would call it... perhaps its better to get a dx of CF/FM along with it? Since SS does recognize those now.


  2. redsox10

    redsox10 New Member

    My daughter was approved her first try.
  3. victoria

    victoria New Member

    My son has been turned down initially and on reconsideration... waiting for court date now, already been 16 months, we've been told to expect 30 month wait time...

    Do you mind telling me what state you live in?

    & How old was your daughter?

    Was she being treated by a LLMD (don't need names of course) in or out of your state?

    Wondering how many of these factors play into it... not recognized here really. Even tho son was positive 2X within 6 months on WB by CDC's 'tracking/surveillance standards'...


    [This Message was Edited on 10/31/2007]
  4. victoria

    victoria New Member

    you should probably start applying now. That way if you cannot go back to work, things will be in place, it can take a LONG time to get SSD. They can only go back so far (not very far) from the date you apply, so if you haven't been working for 3 years, I would apply now and not take the chance.

    A friend had a dx'd mitochondrial dysfunction (from biopsy) and CF/FM, and it still took her 5 years from applying to finally get her SSD. You never know how long it might take...

    If I were you, I'd play it safe. I know it's a big step and hard to do, but is worth it, and you can stop the process if you can go back to work.

    I'd started an application within a month of my son's 18th b'day for SSI, then told SS to wait because he did want to try working. He couldn't do it, and when I called back 5 months later to re-start it for him (as his rep), they then could backdate it to his b'day since we'd already started the process back then.

    all the best,

  5. redsox10

    redsox10 New Member

    HI Victoria,

    We live in NY. We applied when my daughter turned 18 and she was approved 4 months later. I am on disability so I know how fortunate we are. My daughter had a complete crash last Feb. so when we saw the ss docs she was very ill. She was only functioning at about 10%.

    She is treated by a doctor in CT. She has been ill for 5 years and diagnosed with Lyme the last 3.

    When we filled out the initial paperwork we had someone help us from a disability center. My daughter was not in school at all at that time. I don't know if that helped.I never thought she would get approved the 1st time.

    Good luck and feel free to ask me anything else.

    Hot Pepper fan.. I agree with Victoria. i would apply now. It is a long process.
  6. victoria

    victoria New Member

    I'm glad she got it quickly!!-- for all your sakes. I know what you mean, as my DH is on SSD and I don't qualify for anything...

    I kind of wonder if it happened so quickly for your daughter since you are in NY & NE... it's supposed to be extremely rare south of the Mason-Dixon line, per the authorities.

    The real problem is that the doctors here are, and have been, treating it without any kind of testing or reporting -- if one's lucky to have a bull's-eye rash or symptomatic with initial acute symptoms ... at least 3 of my local support group (CF/FM) know for a fact they had it in early 1990s because of rashes, and slowly went down since...

    My son wasn't in school either, hadn't been since 16, altho he was able to (barely) get his GED.

    He just tried taking a pre-algebra college level class this semester, but had to drop it, just couldn't keep up. At the very least he should get it on depression alone, I'd hope. I really hate this waiting game, I really do think they just hope we'll all go away one way or another.

    How is your daughter doing now? ... did she do the IVs or orals or --? My son's been doing oral abx, lately also mepron for babesia, it's been 2.5 years of treatment... pain stays away as long as he's on abx, neuro just doesn't seem to get better (or at least for very long) ... and the longest he seems to be able to go without any meds and no pain is about 4 weeks.


  7. redsox10

    redsox10 New Member

    Good Morning Victoria,

    My daughter is on IV right now. She is on Claforan. She was having better results with Rocephin but developed gallstones. She had a complete crash last winter and that is when she started IV's. She is taking 1 class at a community college and will take 2 next semester. She could never take Math or English right now. She si doing much better than last winter. We are praying for continued progress.

    She is also working with a state vocational center. Every state should have one. They are helping her with school. They are going to put some programs on her computer for school to help her out.

    My son has Lyme too and is doing great. He is back to work full time.

    For your son's ssi/ssd claims did you report all doctor since he was ill. We were told to do this to show how long she was ill even if these doctor did not agree with Lyme.

    Good luck!
  8. victoria

    victoria New Member

    thanks, that's great she's doing so much better!

    We've been trying to avoid IV route, but I've a feeling that is what is going to be suggested. Problem here is that no local doctor will support that; and his LLMD is out of state. So it would mean relocating somehow someway, and I know either my DH or me would want to be with him too.

    Yes, we had everything documented from day 1 of symptoms, but didn't matter sadly... and I wrote a letter as well. His treating doctor plus psychologist both wrote narrative reports as well, and the psych. DOES SSD/I evaluations anyway!

    How long did your son have it? - did he also have to do IVs? Have you been tested?

    This is such a devastating disease, I wish the medical community would get 'with it' and quit squabbling and start working on helping cure pts instead of mostly hanging them out to dry! The ones who claim there is no such thing sure don't have anything to offer, even when it comes to making other dx's, from what I've seen... venting a bit here!


    [This Message was Edited on 11/01/2007]
  9. redsox10

    redsox10 New Member

    Hi Victoria,

    My son's llmd
    thinks he had Lyme for many, many years. He became very ill in early summer of 05. He had increase fatigue for months before that. He started with hallucinations and was afraid to tell anyone. He was on many orals, bicillin IM and Rocephin IV. He is now on the limited Cowden protocol, Doxy and Plaquinal. He feels great and is working full time. He was on IV Rocephin for 7 months.

    My daughter sees an out of state doc, I never thought the IV's would be approved. Many of our labs and all the doctor visits are not covered.

    I tested positive by Igenex. I am slowly getting worse but can not afford treatment right now. I know I have to be treated soon.

    Is your son any better?
  10. victoria

    victoria New Member

    He doesn't have the pain that he had before being dx'd, and he had quite major pain problems - peripheral neuropathies, carpal tunnel both wrists, and most all joints/muscles aching or taking their turns. I'd say the pain is about 2-5% of what it was. And he's been able to gain 20 much needed pounds.

    He was similar to your son in having neuro signs first, except his manifested as hyper-irritability, panic attacks and depression and using drugs/alcohol to self-medicte ... when he did try psychotropics at 15, he reacted paradoxically. And it was like he was ADD, when he never had been before at all.

    It's still the neuro problems that I really worry about... still gets head sweats which is why babesia is suspected. He has one more round of abx with mepron and artemisinin to go before seeing his LLMD in Dec. Bartonella was also treated for because of the brain fog, to which he seemed to respond, but not sure if it's gone either.

    From what I've read it seems that some of the symptoms that have been around the longest seem to take the longest to get rid of unfortunately.

    I am honestly afraid to even attempt to get iv abx covered here by gov't, given the political climate of lyme treatment, and I can't imagine what MD would cover him here for another doctor's treatment ... I don't know what would happen if he legally changed his state of residence tho... I might be asking his lawyer etc pretty soon, tho.

    It's hard enough to deal with this disease without having to maneuver the health field! If your daughter's treatments were covered tho, wouldn't yours as well?

    Thanks for listening...

  11. redsox10

    redsox10 New Member

    My son was so ill. He stopped working and pretended to go. The voices told him not to go. He recovered with abx and Babesia terament. The IV's are what really helped him.

    We see the llmd every 4-6 weeks. Are expenses are very high with all that they are on. Even with IV coverage we can not afford anymore right now.

    How often do oyu see your llmd? You never know if IV will be covered unless you try. We never thought our onsurance would cover this.
  12. victoria

    victoria New Member

    not trying to make light of it either, seriously. How many try, try, and try, until they collapse?!

    On a historical note, I read that when experimentally in the 1930s they treated pts in schizophrenia wards with penicillin for later stage syphilis, it was reported that they cleared out about 2/3 of the pts!

    That's why I just don't understand the doctors who want to think Lyme is not somehow easier to treat than syphilis when it's genome is 2X as complex...

    You're right about trying, generally, but the only insurance he has is Medicaid... which in turn demands that the treating/prescribing doctor be in-state. Thus we'd still need a doctor in-state regardless, which seems to be impossible.


    PS: he sees his LLMD on a somewhat irregular schedule, at least minimally every 3 months, sometimes more often, depends on how he's doing etc. Nice - and necessary! - to have that flexibility
    [This Message was Edited on 11/02/2007]