This is topic Denied SSI and Annoyed. in forum Medical Questions at LymeNet Flash.

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Posted by Jin (Member # 11735) on :
Dear Everyone,
I got my letter rejecting me for SSI yesterday. I knew there was no way it would be obtained the first time. It is obvious they do not know how debilitating having Celiac, ovarian cysts and Thyroid Disease is. At least once my Lyme results come in, maybe I will get a diagnosis and have a better chance at benefits. Meanwhile, I am going to file an appeal.

Posted by CathyMary (Member # 20071) on :
I filed my first appeal back in August 07, still waiting....

I am also going to add a lyme or fibro diagnoses as soon as I get one.
Posted by lymie tony z (Member # 5130) on :
Unfortunately, these things are routinely denied,

the first and second time they are applied for by anyone.


you had better follow up without waiting for them to contact you, because your application,

might have found the "circular files" and or got lost behind the fax machine or

been taken out with the nighttime cleaning crew!

Jin, one must always follow up on any application for I stated above!

Good Luck
They never approved my dissability until I had my knee, totally replaced with hardware!

Hope neither of you have to wait that long for Bb and company to do their dammage.

Posted by Marnie (Member # 773) on :
Good...SSI must be appealed and you MUST have a lawyer. This is an absolute MUST.

Some lawyers will take your case on contingency. In other words, they do NOT charge you if you don't win and are only paid if they-you win.

And their pay comes out of your first check which, if you do win, is back-issued to the time of your original filing.

Lyme is very disabling.
Posted by Keebler (Member # 12673) on :

Yes, You MUST get a LL lawyer. Yes, MUST. They must be LL - or at least completely CFS knowledgeable, having read all the issue of the CFIDS Chronicle and know Cheney's work about the cardiac issues.

You also might find help with a sleep study.

This is not about diagnosis or set of diagnoses. It is about what you can and can't do. I don't think a lyme diagnosis will help much, especially since you are in the midwest and few doctors even know. Yes, it can be very disabling but as long as the IDSA is the official overseer of this and they say it's not big deal, it's a hard road.

You MUST get an excellent atty who specializes in cases for those with "invisible" illness. He can help you with what tests, etc. may be helpful and what other diagnoses you may have that speak more practically to what the SSA is looking for.

Be sure to ask at your local lyme support group and the local CFS support group for the names of local attorneys who are more educated in these matters and who go the extra mile.

Best of luck.



Topic: Resources for getting Disability, Insurance, dealing with HMOs etc

Posted by 'Kete-tracker (Member # 17189) on :
Not to minimize your issues, Jin, but I bet a typical SSA employee will think, "Celiac disease? I know a celiac. She just controls her diet."
"Ovarian cysts? Heck, she can just have 'em removed."
THYROID disease?! [Eek!] Gosh... I have That.
I take one little pill every morning.
$4 at Wally World once a month! [Smile]

"ka-chunk!" **[DENIED]**

Now, if you can get some X-rays of a messed up knee or hip joint- from the Lyme according to an M.D.- you're golden. [Wink]

P.S: You use the term SSI. I assume you mean "disability" coverage?
Posted by CathyMary (Member # 20071) on :
I tried to get legal aide to take my case.

I was denied.

Does someone know a lawyer in the Worcester MA area?

Will they get paid only if they win my case?
Posted by Tracy9 (Member # 7521) on :
I have to agree none of those three illnesses are things that would be considered disabling.

You refer to having ovarian cysts nine years ago. Celiac is controlled by diet, and thyroid by medication.

That is what they will see. Most of us applying are in severely bad situations, bedridden, completely unable to work, with totally debilitating illnesses.
Posted by Jin (Member # 11735) on :
Dear Everyone,
I spoke to a lawyer in December. He said he would help if need be. Getting disability here is almost impossible. My mother's best friend has five different types of arthritis, asthma, peptic ulcers, a torn up throat from acid reflux, and IBS, and she cannot get disability. A best friend of mine's mother has Diabetes, Cold Auto-Immune Hemolytic Anemia, and Degenerative Bone Disease. She is not able to get help either, despite her doctor saying how disabled she is and cannot work.

Celiac Disease is covered by Disability Act 504. However, in this state, they will find any reason to deny it. What is really annoying here is people who really do not need it do obtain benefits. A former pastor of one of the local churches cheated on his wife and got kicked out of the ministry. Despite the fact he was not actually physically disabled, the jerk got disability. That was just ridiculous! Not being able to keep your pants zipped is not a disability!

I am too tired to take a shower half of the time. I have gone on job interviews, but my lack of experience is likely what ruined it. Comicbook art is not a steady source of income. I am checking something else out, but do not know if anything will actually come of it. Thank you all for your encouragement and input!

Posted by CathyMary (Member # 20071) on :
Hmmm, I'm disheartened to see responses that seemed to judge the person so much.

I hope that they were meant to say social security doesn't see it this way.

But they came across as directed at Jin.

She seemed to think so too.

I also hope that on this network there is not a hiearchy to disabilities,

but compassion, encouragement, and information exchange.
Posted by Jin (Member # 11735) on :
Dear CathyMary,
You are so sweet to defend me! I appreciate it. Compassion and encouragement are important. Everyone needs to build each other up, and not pull them down. I get enough hatefulness from family, and certainly do not need it anywhere else!

Posted by Keebler (Member # 12673) on :

People are trying to warn you . . . prepare you. Read those posts again, carefully.

No one is pulling anyone down here. No one is judging. Both posts that said certains dx would not be taken seriously - both - said that is how the SSA sees it and that is their thinking. And it is.

(Although we all know it is often undiagnosed chronic infection) fibromyalgia might be taken much more seriously than the 3 dx you listed (celiac, cyst, thyroid). Did you also put FM on your form?

Did you have doctors' letters, too? Keep them for further filings.

Most people get denied the first two times. It's to be expected.

And, although celiac may come under the ADA law for accommodation it will not be considered by the SSA to be a disability that prevents one from working (for controlling diet works very well).

For someone who has lyme and celiac, when on a gluten-free diet, the symptoms are probably coming from lyme or other things. (Are you being treated for lyme?)

Still, lyme itself, is usually not accepted as a disabilty (although someone from here recently did have that as the listed dx accepted). It comes down to what skills and tasks a person can or cannot do.

If the attorney you spoke with knows all about lyme, see if you can hire him (and usually that is with the contingency that only if you win will he be paid a percentage - but be sure. Some may have changed that policy to cover their costs).

If he does not know all about lyme, I would find another attorney who does. You will not have the time or energy to properly educate anyone in this. You need someone with experience in other similar cases. S/he will have to guide to you want sort of tests or qualifying measures will meet the criteria of the SSA.

Then your doctor(s) can supply the details needed.

Posted by Kreynolds (Member # 15117) on :
I agree with Marnie.... A lawyer is a MUST!

I had the diagnosis of Lyme and it only took 3 months to get SSI with my lawyer.

I think they take advantage of people who do not have counsel.

Once they find out you have one it seems like they won't fight it.

At least thats what it seemed like in my case and I'm only 23.

Good Luck and keep us posted!!
Posted by LittleLymie19 (Member # 15610) on :
I just applied for SSI two days ago. Kreynolds- what you said is encouraging. My diagnoses/conditions were lyme disease, chronic fatigue syndrome, inflammatory bowel disease, costochondritis, malabsorption and chronically low blood pressure. Do you think those are enough to get it? What else did you provide to support your case? Multiple doctors? Did you apply online or in person?

Sorry for all of the's just such a stressful process! I'm so glad that you got it though. I'm 20, so I know what it's like to have to walk into a social security office to file for disability and be the youngest one there by about 40 years. lol...
Posted by LisaS (Member # 10581) on :
I'm sorry Jin, I hope you get it the next time!
Posted by Kreynolds (Member # 15117) on :

I definatley think those diagnoses/conditions are enough to get it.

Does SSI?? thats another story.

I had a walk in appointment, brought all my medical records,doctors names,and my LAWYERS card.

I basically told them that I have Chronic Lyme Disease and have been suffering with it for 2 years.

I also told them that I had seen multiple doctors to support my diagnosis.

I also told them and "showed" them a + Spinal Tap and a slew of coinfections.

Put all that together, with a GOOD lawyer and you should be set.

Oh and by the way, if you have a "local" office that you apllied in, give them a couple of months then start calling them every week.

It seems that they don't like to be bothered.

In my case I called them all the time, I had to. I have a family to feed and cannot work.

I kept saying" was there a decision made yet" every time I called.

Finally, they got tired of me and told me over the phone that I would be recieving SSI.

Keep in mind that they are supposed to tell you by mail. LOL

I hope all goes well for you and I hope it is an easy process, you just gotta fight!

If you have any more questions feel free to ask. Good Luck!!
Posted by lyme2health (Member # 19981) on :
It is my understanding that all lawyers are to take social security cases on contingency. There is a form for you and your lawyer to sign with the application. If you get SS, your lawyer gets a percentage of the back pay SS owes you from your disability date.

In my state, the backlog for SS is huge. 18 month wait for a court hearing appeal.
Posted by Kreynolds (Member # 15117) on :

yep, my lawyer gets a percentage....
Posted by LittleLymie19 (Member # 15610) on :
Kreynolds- thank you for writing that out to me...your information and advice is so very valuable! Congratulations on your success [Smile]

I do believe that I went about this the wrong way. I too hand an in-person appointment, but all I had was a few blood tests (a positive lyme test being one of them, along with an EKG where I had atrial fibrillation), a typed list of symptoms and diagnoses, and a typed list of my doctor's names. I do wish that I had all of the records that I wanted them to see in hand!

Now I know what they're looking for though, so thank you [Smile]
Posted by Tracy9 (Member # 7521) on :
I thought the law only allows the atty to get a maximum of $5300? I just won SSDI after 3 years of fighting for I had a big back payout, but he only got $5300 of it.
Posted by Tracy9 (Member # 7521) on :
Also it seems different in different states. Massachusetts it seems very easy to get SSI. I know several people approved the first try. Connecticut, everyone ends up at a hearing.
Posted by bettyg (Member # 6147) on :
wow....let's clear a few things up ok since so many of these abbreviations are used wrong ....

pays benefits for disabled adults and kids who have limited income and resources

SSDI is social security DISABILITY INSURANCE BENEFITS for having worked at least 20 quarters recently.

official SS web site where you can start reading more about SSDI AND SSI. rontend&ip=

jin and all others, please go to top of SUPPORT and click on MINOUCAT'S DISABILITY info.

print it all out; huge volume of good info there especially CONNIE MC'S Q/As to be completed by your SUPPORTIVE drs.

here's the key on winning SSDI, disability insurance benefits:

now your drs. need to complete each of the questions based upon on how your HEALTH TODAY; not last day you worked:

how long you can do the below examples daily!'

0-2 hrs., 2-4, 4-6 , and 6-8 hours

using your hands
cognitive skills

it's these things your being approved for will win your case! NEVER THE ILLNESSES when it is NOT on the list of approved list of impairments!!

so for those denied or just submitted, go immediately to minoucat's info and print it off; read over and over to comprehend it all.

then get those needed documents to build your case of winning 1st time, 1st step. otherwise it takes 2.5 years to get your admin law judge hearing face-to-face or a LIVE CONFERENCE video one.

we're all speaking from personal experiences.

in my case, my hired lawyer of almost 4 entire years quit me when 1st was at appeals council where he did NOT SUBMIT A BRIEF; so after 2.5 yrs. of being there and NOT opened; AC did NOT have to look at my 3-4" file. they only had to look over my denial from aljudge's notes!!

i went thru both of my 2 claims and started noting things taking 8 wks. to do this. typed up my report and used their list of APPROVED IMPAIRMENTS showing their chapters that matched my medical conditions documented by drs.

had connie's special Q/A forms completed, and i feel the things I DID were what won it for me, and i had a video live w/judge. he said it would be several months before i heard from him and NOT TO CALL HIM.

he approved me in 2 wks!! went back 3 yrs. but NOT back to 1st claim!
Posted by bettyg (Member # 6147) on :
yes, current rate is $ 5300 max. my lawyer also showed $ 7200 0n 2nd claim; and i questioned this and that; so know the rules.

they can charge too for misc. expenses that add up:

getting medical records from each dr; BUT SS is supposed to get them but YOU must supply names/adreses of each dr. you've seen.

overnight letters to SS/DDS...disability determination service folks who are handing your case

copying charges

letters to you

if they fly in to represent you....air, lodging, food, car rental, etc.
Posted by Kreynolds (Member # 15117) on :

You brought in proper information. Sometimes all the information in the world isn't enough.

Just stay positive and if you get turned down, try again, but go about it in a different way.

Good Luck to you!
Posted by Kreynolds (Member # 15117) on :

You brought in proper information. Sometimes all the information in the world isn't enough.

Just stay positive and if you get turned down, try again, but go about it in a different way.

Bettyg has a lot of info on SSI, the links above should certainly give you more answers.

Good Luck to you!
Posted by ConnieMc (Member # 191) on :

At this point, the max fee for representatives is $5300. Effective June 2nd, it will go up to $6000.

If a representative, attorney or non-attorney, wants to go for a higher fee, for example, for a case that requires much more work than typically required, a representative can file a fee petition with detailed records of all work done on a claim. The ALJ or an office in MD handles these requests. I have never done it, or requested a higher fee than allowed - which is 25% of past due benefits or $5300 maximum.

These limits are for good reason. I had one claim which took years to get to hearing and by the time the claimant won, she was entitled to about $130,000 in back pay for herself and her dependents. Yes, I would love to have 25% of that, but wouldn't be fair at all. My fee was $5300.
Posted by Tracy9 (Member # 7521) on :
I think were all using the correct terminology for SSI and SSDI.
Posted by bettyg (Member # 6147) on :
tracy, when i read the above; most are talking about SSDI, disability insurance benefits for having worked enough years to be eligible for this;

NOT ssi...supplemental security insurance

connie, thanks for stopping by and tellign us the new rates & when; if you didn't copy that over to minoucat's info; i'll do it right now before i forget to! [Smile] hugs...
Posted by seibertneurolyme (Member # 6416) on :
To summarize a few things. Most everyone has been correct in the info provided here.

1) Lyme disease is not listed as a disabling condition for Social Security Disabilty. Neither are Bartonella or babesia or any of the tickborne coinfections.

2) If you have seizures or a very serious heart condition or chronic fatigue or fibromyalgia or even mental health issues (could be caused by Lyme or a coinfection or from any cause) it may be easier to use that other condition as the primary reason for requesting disability. Listed conditions have guidelines as to what tests are required and what the results must be.

3) Social Security will almost always send you to a medical doctor and often a psychologist as well. These are doctors that they contract with to examine you. If their docs agree that you are disabled then your odds are much better that you will be approved.

If their docs say you are not disabled then you need to have at least one treating doc (hopefully one who has seen you for multiple office visits over a period of time) who agrees you are disabled.

4) You can still win your disability even if you don't have a CDC positive Lyme test or if the Social Security docs say you are not disabled.

The one thing that counts the most -- but usually only a judge will rule on this without lots of other supporting evidence -- is your treating doctor's written statement that discusses your "Residual Functional Capacity" (RFC). Betty discussed this briefly.

It is usually not your diagnosis that is the deciding factor unless you have one of Social Security's listed diseases.

The best way to win your case is to write your own letter that discusses each of the activites listed on the RFC form and explain why you can't perform that function. For example, I can't stand for more than 2 hours because of fatigue or pain or whatever due to my Lyme disease. Be as detailed as possible. Use the worst case scenario. Report what your symptoms are when they are the worst.

Get a copy of the RFC form from the Social Security office.

Take that letter to your treating doc and have the doc retype it on their letterhead. You may need to make a separate appointment to only discuss your disability application with your doc. Most docs will also charge for the letter. Could be anywhere from $25 to $150 or more -- even if you wrote the letter and they make no changes in it.

Hubby did have a lawyer who we never met. We sent him one or two faxes and talked to him on the phone only one or two times. We did not hire him until after the 2nd appeal was denied.

In the end we did not even have to meet with the judge. About 2 years after we had filed the final appeal hubby called the lawyer to ask how long it would be before his case would be heard. The lawyer called Social Security and the judge pulled hubby's file and made a decision based on the record -- basically he ruled based on the RFC statement.

Social Security had requested records from about 70 providers (doctors and hospitals) from a 3 year time period for hubby. We went to the Social Security office and were allowed to examine his file after the appeal was denied. We had to make an appointment to do this. We were even allowed to make copies of anything we wanted to from the file.

Some of the docs didn't respond to Social Security. We were actually surprised at a couple of the docs who wrote letters saying hubby was disabled -- but they did not provide any real details regarding RFC (which is all that matters to Social Security). And we did not have the personal letter from his treating doc regarding RFC in the file until we filed the final appeal.

5) One final comment. You can get paid going back one year from the first filing so if you have been out of work for longer than a year you may have already lost some benefits. You need to continue filing appeals so your case remains active or it could be considered a new case and you would lose some benefits.

Hubby's case took 3 1/2 years from start to finish and when he finally won he received 4 1/2 years of back benefits.

6) Any records that you feel are especially important you should send or take to Social Security yourself. They may get a 2nd copy when they write to your docs, but we were surprised that some docs had lost hubby's file and some never responded to Social Security at all.

Good luck.

Bea Seibert

P.S. One other final factor that helped hubby win his case -- the judge mentioned this in his decision -- hubby had just turned 50 shortly before the final decision -- Social Security considers that a cut-off point and says you are spproaching old-age at age 50.
Posted by LittleLymie19 (Member # 15610) on :
Tracy- you're right, I'm talking about SSI.

Does anyone know if SSI is any easier to get than SSDI?
Posted by disturbedme (Member # 12346) on :
Yeah, it's much harder to get SSDI when you're young....

I am going to be in that category. I'm 25, have a college education, but am too sick to do SGA (sustained gainful activity). But since I'm only 25 and have a college education, they are going to find it hard to say I'm disabled. [Razz] So I've got a lot going against me.
Posted by bettyg (Member # 6147) on :
bea, thx for stopping by and sharing your expertise on your husband's benefits. [Smile] xox
Posted by CathyMary (Member # 20071) on :
thanks everyone this info is great.

I'm in a "briefly look and print mode" but looks like all this info will help me win my case.

That plus legal representation, which I plan om trying to get later today.
Posted by Tracy9 (Member # 7521) on :
Well, if it offers anyone hope, I was approved STRICTLY for Chronic Lyme in September 08, just a few months ago.

They disregarded all the Medical examiners they sent me to and looked at the reports from my PCP and LLD. My attorney had researched Lyme Disease and developed a questionnaire for the doctors to fill out,

Those two questionnaires are what won my case.

However it took three years.

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