Anyone getting SSDI due to Lyme?

Discussion in 'Lyme Disease Archives' started by buttercakes, Jan 25, 2008.

  1. buttercakes

    buttercakes New Member

    Just wondering if anyone one is really able to work outside of the home and still keep up with running a household and doing everything else that life demands. I pretty much feel like death warmed over and dont know how much more I can take. Ive been treating for Lyme since jan. 1 and feeling worse every day. I truley can hardly function. Any info would be helpful. Im starting to feel like giving up.
    Thanks sandie
  2. hopeful4

    hopeful4 New Member

    Hi Sandie,
    Yes, I'm getting SSD and Medicare for Lyme. It took a long time, so my advice is to get the application and begin the process.

    I first filed, and was denied. At the time, my diagnosis was CFS. Then I went to an attorney specializing in SSD. I had to appeal and appear before a judge. Prior to the court date I was required to get a psychological evaluation. I was diagnosed with depression.

    Because my paper-trail of doctors had been mostly naturopathic, the judge could not grant me an award from the time I claimed date of onset. But, he could grant me from the depression diagnosis. So it was a partial victory.

    Then I got the lyme diagnosis, so I appealed again. My doctor wrote an excellent letter on my behalf showing that I had actually had lyme all along. Then, I won the appeal. I was awarded back benefits as well.

    I would encourage you to get started with the process. Contact a well-respected SSD attorney. You will not have to pay a cent until the time the award is won. Then, the payment is taken out of the award, and there is a cap on it.

    Also, take a look at: Click on "Articles" and you will find such information as the following, and more:

    Articles on Social Security Disability and Various Other Disabilities:

    1. NEW! Five Reasons Judges Approve Social Security Disability Claims

    2. How to Prepare for Your Social Security Disability Hearing before an Administrative Law Judge

    3. Winning Your Social Security Disability Claim: 15 Mistakes You Can’t Afford to Make!

    4. How Does Social Security Define “Disability” Anyway?

    5. Does having an attorney determine whether you win or lose your Social Security Disability case?

    6. Obtaining Social Security Disability: How to Begin the Process

    7. Seven Important Steps to Winning Your Disability Case

    Good luck, don't give up!

  3. buttercakes

    buttercakes New Member

    I read alot on the fm board of others getting ssdi But Iv never heard of any one getting it for Lyme. Congrads! I was just diagnosed Jan.1. About 5 years ago I was told I had Fm, But continued to get worse over the years. How long have you had Lyme? and how much damage has it done to you? does SSDI
    make you report to them on your prognosis? sorry for all the Questions. this is a big step to take, But I feel it is necessary for me to be able to rest in order to get well.
    thank you for your help. sandie
    [This Message was Edited on 01/27/2008]
  4. victoria

    victoria New Member

    In the SSD info on disabilities, 'lyme arthritis' is listed under types of arthritis, but I've been told it might depend on where one lives as to how seriously it is taken by a judge.

    Hopeful4 - do you mind telling us what state or at least regional area you live in???

    It is still considered rare in the SE, esp in Georgia... :(

  5. hopeful4

    hopeful4 New Member

    I don't know how long I've had Lyme. I became symptomatic in 2000 after a stressful life situation and a health crisis. I believe that the lyme was in hiding, waiting for a time when I was weakened and susceptible to it, with my defenses down.

    Damage you ask...well, it's radically altered my entire life! Lost my job and newly impending career, finances, lost "friends", etc. But I think you mean physically: thyroid low, very low hormone levels, cognitive problems, memory, communication, immune system dysfunction, got breast cancer, lost my gall bladder, sleep disorder, etc. etc. Some of these are improved to a degree since I've been in treatment.

    SSDI will require a review at some time, not sure when, but I think in 5 years.

    I urge you not to fear the whole SSD thing. SSD is money you earned and was set aside for you in your time of need. Yes, you need rest, you need the money, and once the Medicare kicks in that will be helpful, too.

    Yes, it can be stressful to go through the process. So be sure to get some support, hopefully in the form of a great attorney who cares! There are some out there.

    I'm a believer in setting your intention, and visualizing what you want to see happen. Picture it all working out for your highest good. You deserve it.

    Well wishes,

    [This Message was Edited on 01/27/2008]
  6. hopeful4

    hopeful4 New Member

    I think it not only depends on where you live as to how seriously a judge takes it, but how well you build your case. It also depends on the "expert" doctor who shows up at the hearing.

    With my first go-around (before I knew I had lyme) I just had the CFS diagnosis. The "expert" doc was something out of a crazy movie. First, he referred to a completely different petitioner than me in answering the judge's questions...he hadn't even read my file, and it was a big file!

    Next, he dismissed the idea that CFS even existed and he refuted the CDC and it's CFS criteria! The judge was not happy with him at all. My attorney and I just about dropped our jaws and rolled our eyes at the hearing.

    I felt the judge cared, and awarded me a partial award based on depression (because my paper-trail was naturopathic doctors, who do not hold weight in federal court hearings).

    When I appealed with my lyme diagnosis in hand, my positive CDC Western Blot, and my 12 page letter from my doctor, who clearly, methodically, and scientifically showed that my previous CFS diagnosis was in fact Lyme Disease, I was in great luck that day. The new expert doctor at the appeal hearing was totally impressed, and advised the judge that yes, I did have lyme disease all along.

    The judge was the same judge who heard my original appeal previously. He wasn't so happy that I was appealing, there was a bit of ego-investment for him. However, he went with the evidence and awarded me the appeal, back-dated to my date of onset. However, apparently he couldn't find a "code number" for lyme disease. He did not want the case to bounce back to him, so he and the doctor decided it would be best to use the "code number" for immune deficiency. Long story...short!

    I live in the northwest, and people just don't believe that lyme disease is here. We have ticks, mosquitos, fleas, deer, animals, woods...just no lyme disease!

    Take care,
  7. buttercakes

    buttercakes New Member

    My last set of labs also revealed low thyroid, low hormones,low vitamin B-12&low vit.D. It must be typical for Lyme Patients. Thanks for your encouragement. The first step
    I have to take is discuss it with my husband. I am working about 32 hrs a week right now, so it will mean a loss of income , hopefully he will be understanding. I see my Lyme Doc. on Wednesday, hopefully he will be supportive. about how long did it take to win your case? thanks again for your help and support. sandie
    [This Message was Edited on 01/28/2008]
  8. WearyChick

    WearyChick New Member

    I was recently dx'd with lyme and will meet with another llmd Wednesday also for a second opinion for treatment. I have done alot of research and have found this site to hold the best information I have found to date

    I hope this helps, but most of all after being sick for over two years and just now finally being dx'd, the very best thing I can tell you is to not loose hope. Surrond yourself with as much peace, love, happiness and humor as you can, it will make all the difference in your world, view the glass half full rather half empty, no matter how hard it all gets.

    I am no longer able to work outside the home and barely at the home so don't feel bad about it, it is just part of the illness you can't control, find a way to make lemonade any way you can.
  9. victoria

    victoria New Member

    we are still waiting for a date for my son's first court hearing on appeal... haven't yet heard of anyone here getting SSI or SSD for lyme... sure hope the judge is as sympathetic to the research on it and symptoms, or at least the fact that having all these problems have majorly depressed him as well. He has had letters written by his LLMD and his psychologist, but still was turned down on 'reconsideration'... so we got a lawyer to file appeal.

    Buttercakes, it sort of depends on where you're located, some locales have longer waiting periods for appeals. One person recently on the main CF/FM board reported it took 7 years altho that included 2 court appeals.

    WearyChick, Dr. Burrascano was one of the first if not the first to start treating chronic lyme... those guidelines still stand. He gives talks at the Lyme conferences too.

    all the best,

  10. NV

    NV New Member

    I was just thinking the same thing today. I am not sure if it was because I was a great house cleaner...not so much a keeper, since I worked and raised kids...before all this happened.
    I have had Lyme since 1986. I was treated like a hypochonriac, but I insisted on being treated. The doctor actually treated me, but he threw the tick away without testing it and told me there were no lyme ticks in our state. Wrong.
    My full blown disease went into regression then when serious stress hit my life, it was full blown again.
    So, I am here to say you really have a serious disease that deserves respect just as any disease deserves respect.
    Please, don't give up...but, do give in.
    I made the mistake of thinking I would be able to go back to work so I took all the advanced treatments and then thought I was ready, and my new wise doctor suggested I wait two years. Aughh, I thought. But, I did as she suggested and learned quickly that she was right. The lymes goes through cycles. It seems to come and go in a regular way. Anyway, don't wait like I did to apply for disability, I lost over 45,000 because I did not want to take advantage of the, they won't allow me to have it because I waited too long from the last job. Ahhh, the little joys of learning.
    I had an advantage, I was a nurse who had worked with many different doctors. Each had a home remedy just in case their patient could not make it to the office. I don't know if it is OK to tell you here, but here goes...take a half dose of children's benadryl if you are not allergic to it. Lay down for an hour and see if some of the symptoms subside. Stick with what your doctor recommeds as long as you believe in them. If you don't, then look for another doctor, but don't let go of the first one, because you might change your mind.
    I empathize with you. I know it is hard to work, run a house and put up with what normal life demands. Your not wrong and you should be tired.
    The treatment for Lyme can actually cause you even more tiredness. Your body is working to cure you. Do you have any alternatives? Have you spoken to a social worker? Are you able to depend on family for help?
    Don't feel like asking for help is giving in. Learn from do need help to carry on.
    I like your title...cute. My mother, who has passed on now, let my Aunt name me because I was born on her birthday. But, I don't think anyone would NV me now.
    This is so hard. I inherited my Mom's dog and today she decided that she would bark at the cats outside for three hours. I had to get up...I have to take a nap because I have broken sleep pattern syndrome. Anyway, I had to scold her and she actually cries real tears. So, then I feel so sorry for her. Then she wags her tail just a tiny bit to say she is sorry and then she scurries up the stairs. I have a chair lift and a wheel chair...but, I have seen Lyme patients go into remission. I wish that for you.
  11. NV

    NV New Member

    I do wish I had read this before. I have a chat friend that recommended this site, and I wish I had met her before, but I have good things in life as well. I have a good husband, great children and four adopted dogs, which I don't have the energy to spoil although I darted out the door this morning in my wheelchair and out to the dog pens. The love just to be touched.
    My neighbors of 26 years came over and made me feel better. We are the waving kind of friends. I can't talk long...but he was complimenting me on doing a wheely in the chair, I really did not intend to, the chair has a mind of its own.
    Got to go now, Thanx for the info. NV
  12. redsox10

    redsox10 New Member

    My 19 year old daughter was approved the 1st time we appled.