posted
I filed my SSDI claim in May as CFS/FM. I just received my Igenex test results where I am Igenex positive but not CDC positive.
I have 2 SSDI exams next week, the physical and the mental exams. Should I even tell them..... does telling them hurt or help my claim??? Does anyone know how SSDI views this? Thanks for any help with helping me to understand this. My brain has been so overwhelmed with just learning I am Igenex WB positive and positive for Babesia Dunican. All this with SSDI exams next week has just swamped my poor scrambled brain.
A friend emailed me that they thought a Lyme positive means automatic approval, but I am guessing that is only a CDC supported positive, and not an Igenex positive?? Does anyone know more?
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
jam,
positives on lyme and other diseases mean NOTHING ON SSDI CLAIMS!!!
it's NOT the illnesses we have that approve us, it's showing the below of WHY WE CAN NOT "PHYSICALLY" WORKing 8 hr. day:
sitting, climbing, using our hands, lifting, crawling, bending, walking, etc. PHYSICAL...
how many hrs. can you spend doing EACH OF THESE ACTIVITIES.
jam, click on my newbie package link below; i have 24-30 pages dealing with SSDI and how you can win by having SUPPORTIVE DRS. FORMS COMPLETED!!
mental testing is good; will show your cognitive problems...where they specifically are.
get copies of all NEW MEDICAL DOCUMENTATION since you applied for SSSDI. send it to the person handling your claim, and yes, have them add LYME also and any other illnesses DIAGNOSED.
are you doing this yourself or thru ATTORNEY?
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Yes, it seems like those who keep a low profile on the "Lyme" thing and focus more on symptoms and disabilities are more successful in getting approved.
Sad but true.
Posts: 1761 | From USA | Registered: May 2006
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posted
Thank you Betty and Mojo. My primary care doctor wrote a letter saying saying I can't work...can't stand for more than 10 minutes, can't sit for more than 10-15, can't lift more than a couple of pounds, can't reach, bend, stoop, kneel.
I also have a letter saying I can't work from Dr. R. Paul St. Amand, endocriniologist and author of What Your Doctor May Not Tell You About FM. I have been seeing him for a year.
Also have supportive letters saying same thing from two chiropractors and a neurologist.
Basically I can maybe lick stamps for a couple of minutes if somebody can hold them for me. Oh wait, I am really dating myself there since stamps are self-licking now!!
On a more serious note, for clarification, sorry my brain is just so bad....should I give the SSDI examiner a copy of the Igenex Test results or just keep quiet about the Lyme???
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I agree with those who have told you that what Soc. Security looks at is what you are unable to do.
You mention that you have cognitive issues:
quote: sorry my brain is just so bad.
I would suggest you look into neuropsych testing. That is what helped me win my SSDI in 5 minutes in the judge's chambers. He announced in the room I was approved.
I used an attorney, in part due to my cognitive problems. He was the one who suggested I see a psychologist for this testing, and he told me which one to go to.
You might want to contact your area support group if you do not have an attorney to advise you about this.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I was able to win SSDI with a diagnosis of Lyme on th e 1st try, no lawyer. It really does go by symptoms, not diagnosis. The new diagnosis of Lyme doesn't change your symptoms so I guess there is no real need to share the info, but don't withhold it either (make sure a copy of the test is in your charts). Best of luck Posts: 371 | From CT | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Anyone with experience in CT? I just found out my ALJ hearing is Sept 25th. My entire application is based on Lyme Disease and co infections.
My attorney developed a Lyme Disease Questionaire which the doctors could easily fill out, that highlighted all the debilitating symptoms. Both my LLD and PCP filled it out.
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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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I am a non-attorney claimant representative - with Lyme.
I have represented numerous claimants with Lyme. The way I approach a claim depends on the evidence available - Lyme does so many different things, every claim is different.
First of all, a claimant must have a "medically determinable impairment" which is reasonably expected to cause the alleged symptoms or disabling conditions. A + Lyme test isn't necessarily needed. I have had several cases awarded based on a clinical diagnosis.
Once the above is satisfied, I decide if any SSA listings are met. For someone who has a very compelling neuropsychological eval showing severe cognitive impairment, I will work up the listing "organic brain syndrome". For someone who has severe arthritis with obvious changes on x-ray and obserable swelling, I might work up one of the musculoskeletal listings. Same with any other Lyme-related symptoms - cardiac, etc.
But to take it one step further, I will work to show the functional impairment caused by the medically determinable impairment. "Subjective" symptoms (pain, fatigue, etc) are fine, as long as there is longitudinal evidence that documents the frequency and duration.
Most Lyme claimants will win on residual functional impairment ... meaning that the evidence clearly shows that they have a medically determinable impairment that is reasonally expected to cause disability to the point where an individual is unable to perform substantial gainful activity.
When I complete a pre-hearing brief, I cover all of the above areas. It is not unlike putting a puzzle together.
Medical evidence is the key. Make sure your doctors state things in functional terms. To the best of your ability, follow all prescribed treatment. Before each medical appointment, write down critical points - new symptoms, struggles with activities of daily living, brain function, etc, etc.
Thus far, using the above strategies, I have had 100% success with Lyme cases, both at hearing level and lower levels. Do find a disability representative who understands illnesses like CFS, fibro, Lyme, etc. It is critical to do so. You will need a rep who will go the extra mile to do what it takes to put that puzzle together for the judge or DDS, whichever applies.
Good luck...
PS, I live in a state where one of the best LLMDs in the country was taken to trial for his way of treating Lyme, and he ultimately left the state to practice elsewhere. However, that has not had any impact at all on SSA decisions. Judges frequently cite Lyme as the medically determinable impairment in these decisions, and they have seen first-hand through medical evidence what Lyme can do to a person.
Posts: 2276 | From NC | Registered: Oct 2000
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posted
I have being considering going on disability for the past month. I went from fully functional (probably 80%) to barely being able to maintain.
Luckily I just started my job, so not a lot is expected of me...that being said I have no completed a 40 hour week since I started July 7th. They have NO idea I am sick, but I get home and crash. Monday I am ok tuesday is tough wednesday is rough thursdy is a disater and friday and disasterous. I literaly struggle to keep my eyes open. My joints are so sore and sitting is difficult.
It's just been so hard the last month in a half and my doctor suggested I go to on disabiltiy since I just retested positive for Lyme on IGG and IGM (or whatever that igenex thing is)
I was thinking of going with encepholidice (sp?) clearly I have it..haha
but here's my moral concern-if we all (lymies)going on disability under "cfs" or what have you then the medical board isn't going to realize how serious lyme is! We need to all claim disability under LYME-otherwise we're going to get no where..
it's tough but we have to stay strong! Any suggestions would be great
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Connie, thank you for all the great advice and taking the time to write that for us. My SSDI exams are next week, ugh. There is no doubt they can "see" I am sick. I can barely walk or talk and look like I should be hospitalized, seriously. I am well past the stage of hearing, but you don't look sick. Now, my my primary doctor writes in my files that I look like a very seriously ill woman. Duhhhhhhhhhh, no sh**. I feel like and look like a toxic wasteland. When talking and having to answer questions with one on one communication I experience what I call brain stutter, and that manifests in my speech as speech stutter.
I have heard that 80% of all new claims are denied. I applied on my own online figuring that would likely be the result, and if denied then I will get representation to help me. My field office representative expressed how well presented my application was. I am not sure if that comment hurts or helps. I made sure I told her I had friends who helped me with it. Having it well presented, whatever that meant, won't of course help me getting it approved. But, it will help a representative in wading through and putting it together for later.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
quote:Originally posted by Tracy9:
Anyone with experience in CT? I just found out my ALJ hearing is Sept 25th. My entire application is based on Lyme Disease and co infections.
My attorney developed a Lyme Disease Questionaire which the doctors could easily fill out, that highlighted all the debilitating symptoms. Both my LLD and PCP filled it out.
no experience w/conn. but have these statement and please review my REORGNAIZED newbie package link below for 24-35 SSDI info i have galore including CONNIEMC'S suggested forms be completed.
compare them to what your drs. completed!! ****************************************
read also on how to prepare for hearing that daY;
clean clothes; no holes; but clothes you wear around home; NO SUNDAY BEST.
NEW JEWELRY; NO MAKEUP;
in my case, i brought my heating pad 1st time; my ice packs 2nd time.
warning, someone will be watching you as you leave building to go to your car ... show how disabled you are during your walk, etc.
is it in person or a VIDEO ONE? i took my own tape recorder to 2nd one where i was only one in room for video one! i hauled 2 full boxes of my files; didn't need them.
good luck tracy!! ALJ told me it would take longer than 2 months; DO NOT CALL HIM!!! he was head honcho over ALL ALJS!!! 2 wks. later i received letter I WAS APPROVED AFTER 5 YEARS ... 3 yrs. ago!!
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Betty, Did you get a huge amount of back pay? I will be getting paid going back four years. Do they send it to you all at once,and how do you plan for taxes?
I am desparately hoping for this lump sum in back pay; but worried about how you get it and how much has to be set aside for taxes, or if they take taxes out beforehand.
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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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I recently got approved for SSDI. I was denied the first try. I have had a lawyer from the get go.
I did write Lyme on my application. I left off the word "Chronic" though. I also wrote FM, CFS, and depression,
Posts: 3905 | From USA | Registered: May 2007
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bettyg
Unregistered
posted
quote:Originally posted by Tracy9:
Betty, Did you get a huge amount of back pay?
YES, I GOT 3 YRS. BACK PAY IN "ONE" CHECK! NO TAXES DEDUCTED!! IT RAISED US TO HIGHEST TAX % TO PAY!!
SOME FOLKS ARE SENT SEVERAL CHECKS; you never know when it will be sent. check your bank acct. ... it shows up first BEFORE you normally receive a letter saying they are sending it!!! Betty
I will be getting paid going back four years. Do they send it to you all at once,and how do you plan for taxes?
I am desparately hoping for this lump sum in back pay; but worried about how you get it and how much has to be set aside for taxes, or if they take taxes out beforehand.
tracy, i'm thinking this 3 yrs. back pay caused us an extra $3 - $4,000 PAY IN TAXES!! *************************************
so you want to make sure you keep a healthy piece of it around for april 09 taxes!! betty
mine went back 3 yrs.; not 5 yrs...they would NOT reopen 1st case.
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posted
Jam, Since you have high EBV, I would submit those test results instead (if you haven't already).
SSDI considers high EBV titers objective evidences of CFS disbility. I sent you the link that that Social Security ruling, so let me know if you need it resent.
I would hold-off on submitting the Igenex results for now, at least until you have discussed with your doctor and start a lyme treatment plan.
Email me if you want more info. Otherwise, good luck next week!
Erica
Posts: 408 | From California | Registered: Apr 2008
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posted
Just to update on this thread. I saw my LLMD and asked his opinion about considerations/implications.
He said the considerations would be that it could affect two things: -could impact a future change in health care insurance -could impact future life insurance policy
Just to clarify, I am not saying that no one should tell their primary doctor about their diagnosis. And, that is not what my LLMD is telling me. I asked what the considerations/implications might be, and that is what he responded to.
Its a personal decision that each newly diagnosed person must decide for themselves.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I had a life insurance policy revoked when they found out about lyme. I purchased it several years after the diagnosis and had it on my history form, but they missed it and told me it had been an error on their part to ever have even accepted my application.
No other problems - oh - but seizures. They said the lyme was the reason, though.
They sent me back the fees that I had paid in for about a year.
I am not 100% sure but thanks to sad to say HIV infected individuals legislation had been passed it has to do with "pre existing conditions"..
Betty may know more about this than I because of her work with legal and it may be worth looking into of course with what else the assistance of an attorney...
That's where all those HIPA laws may come into play on this one, not sure know tax law but something just ain't seeming right.
Be interested to know. I remember years ago when Forbes was dying I want to say of some pre existing diesease he could buy insurance but because of his condition premiums weren't cheap....
He wanted to buy insurance to protect his estate because at that time the estate value tax was 55% I believe and the expemtion was only $650,000. He was worth billions. For what it's worth Elivs lost over have his 13 million estate because he didn't have insurance to pay for estate tax, but he didn't have a pre existing.
Makes you wonder what it takes huh I in HIV stands for Immune, maybe we should change it to LIME - and think of an accronym which has Immune in it......
But let me/us know how you make out on that pre existing condition info if you go that route it could be interesting and helpful.
I guess they do recognize it as an uncurable disease in some instances huh.....
Did you sign anything?
[ 29. August 2008, 08:06 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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