Disability Help

Hello everyone, I have not been on here in a while but was just seeing if maybe I could get some advice in regards to disability.

I have been sick with lyme and co-infections since May 2011. Without going into too much detail I have obviously like so many others been through hell with it all and therefore found myself starting the disability process in 2015 because of my inability to work or return to grad school.

I was denied it in 2015 after my doctor filled out the RFC forms, then was denied again even after social security sent more forms that I never even saw to the doctor in which he more extensively described my condition and resulting inability to function normally.

I got a notice about a month ago informing me that a hearing has been set for September 11th (this year). There is a third party disability advocacy group that has been helping me with the process who was also notified.

Unfortunately I have not had health insurance for over a year so I have not been able to get more updated information to use as evidence of my debilitating condition. The advocacy group recommended going to a cheap clinic such as a Zufall Wellness Center so I think I may do that just to get something from a doctor signifying my inability to function due to lyme. I'm just scared that without more recent medical evidence the judge is going to turn me down swiftly especially considering what I am trying to get the disability for.

Does anyone have any suggestions at all regarding what to do to maximize my chances of getting awarded disability? Should I just go see a doctor and pay out of pocket for it? The funny thing is that I don't even want to go to get treated as I am treating naturally with Buhner herbs and have already been treated with a slew of antibiotics. I just want the doctor to fill out an updated RFC form for me.

I should note that I have been working a bit with my father however that is under the table so the judge won't know that. I also know that I just cannot last doing that or anything else as has always been the case for me with my lyme. I really am in need of disability to fall back on as I cannot live with my parents forever.

Thank you everyone for any advice in advance.

Hi hateslyme -

I am in the same situation. My SS disability hearing is in Sept as well. I've been dragged through the system with denials for 3 YEARS! I would have had FULL benefits at my salary had I only been diagnosed one time during the past 20 yrs............

Of course, after all this time in tx, I'm finally recovering (altho still not back to work full time) and will be talking w/ my "disability lawyer" tomorrow to find out what chances there are of at least trying to recover back pay (CA pays up to 2 yrs, but at min. amount and it's a fraction of my financial losses due to not being employed and having exhausted all my savings but it's at least something).

We'll see what they say - I know it's not promising.

I was told every step of this process that the decisions rely heavily upon MD's documentation. I have that covered but you're right to be focused on this. I agree that seeing someone to get that initial diagnosis might help. I'd email Girlie for names of LLMDs in your area. You can find her email address in her profile. Or click here:
www.healingwell.com/community/profile.aspx?f=30&p=197951
​
​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: [email protected]​

ILADS has their own referral system as well:
​​​ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

Lyme coaching
www.lymecoaching.com/#!schedule-a-call/c1gzt

Here are some additional resources:


Here is info Traveler provided in another thread - might be helpful:

Also be sure to check out this resource, ​it's the site that I use to help interpret WB results:/docs.google.com/document/d/1ey9d9i44f45XthF3I_Bt2lxdHYSc5Y9mwYF2c82l-i4/edit?usp=sharing You can go there to find supporting Pubmed articles showing what these bands represent.

Also, have you seen the articles that have been written about filing for disability? Seems that the information provided in those article may be of help to you in how to show you are 'unfit for work'? Here are a few to get you started:

/www.lymedisease.org/burke-disability-lyme/

www.disabilitysecrets.com/social-security-disability-lyme-disease.html

/www.disabilitybenefitscenter.org/disabling-conditions/lyme-disease

www.ssdrc.com/ssd-lyme-disease.html

/fromlymetolife.com/category/social-security-disability-for-lyme-a-how-to-guide/

-p

Here's my personal experience in a nutshell. I don't know what State you are in but that may make a difference. Not only is Lyme accepted as a disability in California (I think that's the State), but the Social Security Law Judges are more lenient.

My diagnosis, which was for Severe Fibromyalgia NOT Lyme and co., was not an acceptable disorder.
Through 9 years and 3 judicial hearings, I learned to concentrate entirely on my symptoms and how they had limited my life and work, rather than the Fibro diagnosis. It seems like Lyme victims are going through the same nonsense of unacceptability that the Fibro diagnosis did a dozen and more years ago.

Seriously the only things that made a difference the last hearing was I had fired my attorney so had been assigned by the court -a work advocate. That allowed me to be questioned directly at the hearing. My first 2 hearings I wasn't allowed to talk. Just the attorney talked and you know what he said to me? He told me HE doesn't have to believe that I am disabled to win my case. It was all based on the paper work that the attorney sent the judge, and if the attorney could present any kind of case precedent that was similar to mine. I said "enough", this isn't a game, it's my life.

I ended up with a substitute Judge that flew in from California. (I'm in Missouri). And I had finally, after many years, gotten an actual diagnosis (other than "she's faking it") for an on going vision problem with one of my eyes. My vision made functioning in any kind of work setting difficult. Sometimes even driving a car is impossible. These things I am sure made a difference for me being approved.

How can this information help you? Concentrate on what is disabling you, specifically. Don't try to say it's because you have Lyme, etc. They may pigeon hole you like so many with Lyme are.

Let them know what has limited your daily functions at home, and your social life. They always say don't be a hero. By that the mean don't tell them that you are doing more things than you are, or that you are doing things that send you to bed for 2 days after. .


The fact that you don't have recent medical evidence is rough. Walk in low cost clinics are a good idea, but they aren't going to know what to do for someone that has Lyme. Go in asking for help to deal with whatever symptoms you have. Fill any prescriptions even if you don't want to take any of them. No one will know if you're taking them or not. Unless they want to give you prednisone injections. You don't want to make things worse.

If you can get pain medication that's even better, but for sure list any and all OTC pain medications you take or would take, because again, they have no sympathy for someone that says they try to push through pain because they can't or don't want to take anything.

It's also important to let them know the mental aspects. You don't necessarily have to have brain mri's to back that up. Sometimes they don't show lesions anyway. Sometimes they do. Social Security always sent me for mental function testing, but neuro Lyme hadn't kicked in with me yet.


I'm glad you have help getting through the endless forms. That's a nightmare for sure.

I would find out if anyone has won a disability claim in your State for Lyme Disease. If not, or you can't find out, again I advise don't concentrate on just the diagnosis. Base it on more on your symptoms and how they limit you. They're going to have to have all of your previous medical evidence anyway, but as far as they know arthritis is about the only Lyme symptom, per CDC.

Is Lyme affection your vision?