I am looking foir a couple of good scientific/expert articles/studies
for an upcoming social security appeal court hearing. I need something
that not only explains chronic lyme disease and the severily of
symptoms, but also shows/ discusses (preferably explicitly, but at least
implicitly) the effect of this in terms of dysfunction & disability &
functionality of the individual.

The main thing with disability claims is to be able to show how the
disease prevents one from performing work of any kind. It seems like it
would be obvious for someone extrememely ill, with well-documented
symptoms as well as positive tests, but social security still claims
there is no proof of inability to work.(despite many records saying I'm
confined to bed up to 20 hours a day, in great pain, etc etc)...My case
has been denied twice already depsite "a multitude of symptoms",
"positive tests consistent with lyme disease", "ongoing documented
medical consultations over the last 12 years seeking help for (same)
symptoms". Still no evidence of "physical findings" indicating
"inability to work", etc. etc. (their quotes).

The judge I will see will know nothing about lyme disease, and according
to the lawyer I've consulted, we  need just a couple of clear, concise
papers by experts (she says the judges have short attention spans and
won't look at much). Can anyone help me out here--I need full papers,
not just abstracts. I'm extremely and can't order all the full papers
suggested by the abstracts on Art's site to determine which might be
useful, so I'm hoping someone can help.

Also, I'm remebering a quote from NIH--I  think it was their first
study---about the severity of illness in chronic lyme and that these
people have greater disability in terms of funtioning than a certain
class of serious heart disease patients. I'm not remembering this
clearly, but if it's something like this, it would be useful. (It's
helpful to be able to prove that a disease social security doesn't
explicitly list in terms of disability causes the same or greater degree
of impairment than ones they do list.) Does anyone know what I'm
referring to (it was a couple of years ago I think--certainly not
recent)? Again, the important thing is functionality and how chronic
lyme affects that.

Also, anything which talks about how lyme causes arthritis but does not
necessarily or typically manifest in visibly red, swollen joints (cause
my "physical findings"/ exam didn't show this so therefore I don't have
lyme arthritis....)---I think this is less important thant the other
things I need but it may be helpful to see it described properly.

Thanks so much for any help. Please e-mail me directly with any
articles/information. I would really appreciate it.
Linda

Email Art Doherty,

maybe he can dig up something for you.

Chicci

Sent via Deja.com http://www.deja.com/
Before you buy.

I was also denied 2 times, reviewed, denied again, had a psyche
evaluation, and then waited 9 months for a hearing.  It was a long haul
for sure.  I hope the attorney you are consulting has a lot of
experience in SS disability.  I didn't use one until the last 3 months
because my file was more than 1000 pages of medical info.  The attorney
had been an attorney on behalf of the ALJ so he knew the red tape.
Unlike yourself, we went with everything I had such as the fatigue,
cognitive deficits, neurological deficits, vision loss, pain, arthritis
and whatever else was listed that I don't remember.  Hearings in this
state (Ky) are scheduled at 45 minute intervals.  This includes time
going in and out of the room and all testimony.  While you may be able
to submit the complicated lyme research, I doubt if you have any time
to explain it that day.  It was very low key and in a relaxed
atmosphere.  Never had a clue what to expect and never expected how it
was.  The "interview" or questioning was done by my
attorney for maybe 10 minutes.  We spent 10 swearing in, playing with
papers, etc.  The remainder of the time I did not say anything.  My
attorney and the "jobs guy" (not sure the position name) went at it
like 2 computers spitting out data from the Paper Chase.  It was 'so
that taken into consideration, sir what do you show'... then came x
jobs in the city, x in the region, x in the state, x in the country.
Then 'add in this ailment or that one'.. then what say you jobs guy...
and so it went for 20 minutes.  It was obvious to me that it was about
red tape, stats and medical-vocational rules more than it was about me
being disabled. They knew I couldn't do my career job but they were
going to look for anything that I could do... even if it were counting
shoelaces. The "winning" mecical info was the fatigue, the pain, the
confusion, the needed rest times and being in bed 20 hours a day. And
it was more a hinderance than help that I had a skilled work background
that was not transferable.  At the end when I felt I had said not much
more than my name, address and how my life has changed from what it
was, the judge said to the attorney "you'll have my decision quickly".
My attorney told me that was good because if you are denied at the
hearing they have to go through all the file again and prove why their
reasoning you are denied.  The best thing I did was hire the attorney.
Their fee is set at 25% of back benefits or $ 4,000 max - no matter how
long they work with you on your case. They can of course charge less if
they choose.
I was exhausted and cognitively unable to communicate for myself.  I
wouldn't have had a prayer at the hearing with this 'jobs man' because
I didn't know the language among other things.
I left work Oct 4, 96 on medical leave.  I file and was denied and then
was so ill I didn't even challenge the first filing.  It was actually
Feb 1999 before I filed again.  They did 'open' my first claim and
that's why I got a quick denial again, the psyche eval and other
things... including denied again.  So it was 15 months from the 2nd
filing to the hearing.  I knew that SS could only approve 12 months of
back benefit from the time of filing so I did myself an injustice by
waiting to file in 1999.  I was concerned with income but more so
the 'freezing' of my paid in benefits over the years. In the end, the
decision was to commence full disability as of October 4, 1996 - the
day I left my job on medical leave and that benefits would be paid at
the max which included 12 months prior to the file date and then the
time I waited to be approved. Based on what I understand that is
somewhat unusual (going back to Oct 4 96 anyway). Again I think it had
most to do with the attorney I chose and his past experience with the
system and my constant attempts to keep my medical file updated and
complete.
The "fully favorable" decision came just 2 weeks after the hearing
date.  Although the decision continued to note "claimant does not have
an impairment that is --listed---, the determination was made .... and
it goes on.  The conclusions read that 1) disability is due to the
residuals from Lyme Disease, and then the arthritis, encephalopathy,
polyneuropathy,  Wilson's Syndrome, Hashimotos Disease and maybe
something else.  It describes the "lyme" episode from day one along
with descriptive paragraphs of what happened in the following months.
But I think what ended up being equally important was the ALJ's finding
that I laced the basic mental ability for competitive, unskilled work
as described by a ruling 85-15. ...whatever that is.  In the end, I was
approved although about every "finding" seems to read the claimant has
no impairment that meets or equals the criteria of any impairment
listed in Appendix.... and so on...
Then: The medical evidence establishes that the claimant has the
following severe impairments:  residuals from Lyme disease.
I guess what I'm trying to say is that with all the medical evidence of
disease, illness and disability I had - it still didn't fit the magic
list.  But that didn't matter.  It didn't have to be on the list.  They
found my assertions concerning my ability to work credible.  I am
thankful.  It is difficult for me to understand the rules.  In
particular the definition of disabilty according to the SS.  That
is "defined as the inability to engage in any substantial gainful
activity by reason of any medically determinable physical or mental
impairment that can be expected to result in death or that has lasted
or can be expected to last for a continuous period of not less than 12
months.  And in our understanding, it means if you are able to work and
generate $ 600.00 a month income then you are not considered disabled.
I apologize that this is wordy.  I guess what I'm saying is that
although you might take the most factual documentation with you about
lyme and it's evils, the hearing is mostly a time for the judge to see
you, evaluate you, determine your credibility and then have the 'jobs
guy' to determine whether there is any employment anywhere in the
state, region or nation that you could do.  It's not just as easy as
proving lyme exists and destroys your life.  I believe the ALJ is more
interested to hear that it has, not that it can.  I apologize that this
is so wordy.  It was difficult to remember and stay on track.  If
there's something I can do to help, or look up in my own report and
decision, send me a note and I'll do what I can.  Good luck at the
hearing.
PS:  I know there were many lyme articles in my medical file because
the local neurologist filed them when I took him copies.  The report
that has been most beneficial to me over the years in educating doctors
has been the Neuropsychological Manifestations of Lyme.  It is about 30
pages long, written by 6 docs but covers the whole story (except for
the scientific stuff). If you don't have it, I think I can find it for
you.   Good Luck!!  /brite

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Before you buy.

Hi Brite,
thanks for you reply to my post--I might write you for more info at a
later date. I'm talking to an attorney now. I almost missed your reply
because, due to terrible headaches and eye focussing problmes, I can
rarely check the newsgroup and thought all the replies had come to me
personally. Thanks for sharing your experience. I'm so glad you were
successful in getting disability (and hope you are equally successful in
getting bettter!). My case has been going on for nearly 6 years, partly
due to complications cause I lived and worked in Canada for several
years, and partly cause my file was "lost" for a long time!. Anyway,
wish me luck....Linda