cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
yes, lost on first appeal, took about a year and then i won.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Many of us have been successful in getting SSDI. I had to go to the ALJ stage for approval, but I think some of it depends on where you live.
Depending on your cognitive skills you may want to go ahead and find an attorney who has experience with Lyme, CFS, FM cases so you start out on the right track.
I did this because the paperwork was overwhelming and I often misunderstand directions.
I never had to see a SS doc, and I think that is due to my LLMD's excellent records and my attorney's sending me for neuropsych testing early on.
Check with local support groups for names of attorneys. There will probably be people there who have been successful and they can help you navigate.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
did you receive my newbie package 4 months ago; it's all there....last 25-30 pages.
print it off and start with CONNIE MC's required forms; those are the clinchers helping you to win with SUPPORTIVE "MEDICAL NOTES IN YOUR FILES" !!
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posted
[QUOTE]Originally posted by cottonbrain: [QB] i was successful, but that was ten years ago, and for disability based on CFS.
I was successful 20 years ago, and for CSF too.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My ALJj hearing is coming up. Any short and sweet pointers?
I do not have the ability to sift through Bettyg's 23 pages. Just need some bulleted suggestions.
I do have an atty. How do I know the doctors filled out the forms or submitted reports that accurately reflect how sick I am?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tried and was denied. I had an attorney too. I was seeing an LLMD & a neuropsychiatrist who specializes in lyme and sleep disoders. I have lyme disease and narcolepsy.
Was told that my "post lyme symptoms" were not severe enough that I could not go back to full time warehouse work. What a load of ********! Being poor and sick sucks.
I am impatiently waiting for my trial and second chance, which will be sometime in 2009.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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daise
Unregistered
posted
Hi Catalyst,
I'm so sorry you didn't get SSDI. Why does that also have to be different for everybody, just like Lyme / TBI's?
Now you'll have to wait until next year. That's horrible. If you or your spouse are a veteran, please PM me.
If you are unable to work--and I realize that's just about "no" or "no, I'm getting worse having to work"--then if you have to, do you know about SSI from Social Security? It's not much at all, but it's something and usually comes with Medicaid and you could apply for foodstamps.
I know that's not enough to live on. Do you have a relative who can give you a corner of their home? At least you'd have something to contribute. Wait a minute. They'll take away your foodstamps.
I don't know, I'm just trying to be helpful, but with Social Security, did the fact that you do work, work against you?
Ill people are in a real bad way, with Social Security. They award SSDI when you can't work, due to disability. But what the H--- do they expect you to do in the meantime?
I worked and that made my condition far worse. I cried that I had no choice but to work. I had Bell's palsy for 4 months. I blubbed and slurred my way to conduct business. (I had my own business.)
I quit, borrowing money from my Mom until I won SSDI.
That is so very badly wrong in our country ... dear God it's wrong.
The neuro psychiatrist specializes in Lyme and sleep disorders? You mentioned "post Lyme symptoms." Sounds like a duck--who lied.
I say that because "post Lyme" is a phrase used by ducks aligned with IDSA.
Yes, SSDI on my first try with no attorney. There were previous problems with Social Security: The first time I went in I asked for SSI and I was told that there was no such thing as SSI.
I asked to speak with a supervisor, but I was not allowed.
Then ... I heard that that exact same thing had happened to at least several other people. One of them got a lawyer and that came out loud and clear in the hearing!
I went back in over one year and three months later, armed with that knowledge, firmly told a supervisor of the case workers what had happened, gave my (wrong)new diagnosis of fibromyalgia and chronic fatigue--"but I feel strongly that I have chronic Lyme disease and that can cause fibromyalgia and chronic fatigue."
Since I had no lawyer, when they checked out my health history, they found that an MD who works in administration with the insurance company had just made arrangements for assessment with an LLMD.
I got SSDI 5 months later.
Man, strategy is everything. I lucked into strategy.
Some get it with a lawyer. In my state they are free--Social Security pays their fee, not you. They're in the yellow pages--see their ads.
However, you must FIRST get a lawyer, if that 's waht you chose, because if you sign just one form for SSDI, then you will have disqualified yourself from getting a lawyer. That's how it works in this state. I hear even that can be different elsewhere.
I'm not saying "Get a lawyer." You have to decide.
.... also is having the special forms that CONNIE MC supplied us with that i talked about above:
..RFC; residual function capacity; ***************************************
.. MFC .. mental function capacity; ************************************
there were 2-4 more; been so long i can't remember what they are called!
example, RFC, *******************
it asks questions and your DR/PCP/LLMD must answer for each one with these guidelines.
0 to 2 hrs.
2 - 4 hrs.
4 - 6 hrs.
6 - 8 hrs.
in the shape you are TODAY, NOT THE DAY YOU LEFT WORK, etc. ***************************
how long can you:
walk, stand, lift, bend, crawl, use your fingers, ...the things mentioned above.
YOUR DR/PCP/LLMD's comments hold MORE weight than their "on staff" mds/psychologists/psychiatrists, etc.
hope that explains that one.
yes MINOUCAT has the disability post shown at the top of GENERAL SUPPORT!
my/connie mc's info is there plus lots of hers, and others!! ****
so tracy, check out MINOUCAT'S POST IN SUPPORT at top.
she has a table of contents for you to check ok; i think she shows connie mc's besides HER info she furnished!
my newbie package has table of contents now on all but SSDI info. you all keep me so busy with pms, llmds, newbie packages, and just answering questions.... i just don't have time to finish what i started.
lou bachman told me when i finished the table of contents, he'll post it like treepatrol's and will save me HOURS OF TIME sending, etc.
I never made it to a hearing as I got SSDI on the first try, without a hearing. (See my posts above.)
You are not working. That's certainly in your favor.
You wrote: "I do have an atty. How do I know the doctors filled out the forms or submitted reports that accurately reflect how sick I am?"
Call your lawyer and ask!
Or better yet, call your doctor(s) and ask! Do they have copies of what they filled out for Social Security? I dunno.
You might try to get copies of your medical records (which you no doubt have done already,) however, you need the latest for those forms you are wondering about and specifically ask for copies of those forms.
Whatever feels that it's the right approach / intuitive to you.
Depending on what your body wide signs and symptoms are, it seems SSDI for chronic Lyme is usually awarded for head stuff, meaning depression, for example.
I actually got SSDI for depression--and I never took an antidepressant, not before or after! I saw their shrink briefly. They relied on the cause, being Lyme, fibro and chronic fatigue.
They had my gigantic medical file! It showed I'd been to see about 30 doctors!
Or people get SSDI for Lyme due to a type of brain test. I can't recall the name of it. It's in a post in the General Forum. See page 1 or 2 there. You'll find it!
You can get SSDI for things related to Lyme, or to beef-up your case! Do you have a picture of the bulls-eye? Naw, most don't. Positive Lyme tests?
What other tests demonstrate Lyme or DISABILITIES? What physiological disabilities might you prove with tests? Insurance companies and Social Security love tests.
Please read my first post on this thread, for information on searching for SSDI stuff! Again, most of it is in the General Forum.
It seems nothing is routine for a Lymie when trying to get SSDI. Darn, it's different for each.
quote:Originally posted by daise: Hi Catalyst, The neuro psychiatrist specializes in Lyme and sleep disorders? You mentioned "post Lyme symptoms." Sounds like a duck--who lied.
I say that because "post Lyme" is a phrase used by ducks aligned with IDSA.
daise
Hi Daise, Thanks for the suggestions. Sounds like you have had your fair share of difficulties with the process it's self. No, my neuropsychiatrist supports that I still have active lyme, it was probably the doctor psychiatrist I had to see who reviewd my case for social security that probably made up the 'post lyme' ********.
I'm living with my parents, who help me pay for my $500+/month worth of prescriptions and doctors visits, since I have no insurance. I work 12 hours a week, which even that is really difficult to be awake/alert for. I should apply for foodstamps, It's just so hard for me to get everything done because I have SO little energy. Guess all I can do is wait, wait, wait.
Oh, and nah I'm not a veteran, I'm only 24 years old and don't have a spouse. So I'm not elidgable for medicaid or SSI.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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daise
Unregistered
posted
I hear you, catalyst. Stay with it, OK?
How about getting SSI, instead or while you're waiting for your next SSDI hearing? That's fast, in a few months, and you often get Medicaid with it, where you choose your Medicaid insurance company.
Have you heard of Prescription Hope? Lyme meds for $7.00 per month, each:
posted
Hey Daise, I'm going to check out that prescription hope thing. I edited my post before, and as I said I'm not elidgable for SSI or medicaid. I'm too young.
Maybe I could get some cheaper antibiotics. But I'm sure that my one narcolepsy prescription ($400/month) will not be covered by it as they do not offer any patient assistance program, unfortunately.
Thanks again for your help Daise!
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I could be wrong, Catalyst, but you might be able to apply for Medicaid.
I think you just have to be sick and have pretty much no money in the bank and no assests.
I am 24 and I got it not too long ago.
And, to people talking about the "post lyme syndrome"...I am not sure about this, but I wouldn't worry about that. Find other diagnosises besides just the lyme.
Like, arthritis, disabling fatigue, and all those technical medical terms that translate to mean random symptoms.
I think it is also just about proving you have enough "issues" to be disabled. Prove you are incapable of doing things. I was diagnosed with dysautonomia and I put that on there.
I don't know if this is good advice, I'm not a specialist with getting SSI etc, it just seems like common sense to me, so good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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bettyg
Unregistered
posted
kayas mom,
here's direct link for kids UNDER 18 **************************************
1st judge was NOT going to let me go to bathroom; i did while voc rehab man stated what jobs i could do ... that horse's patutt! *****************************************
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