Are those of you who are receiving Social Security Disablity benefits, receiving them under "Lyme Disease" or other diagnoses?
I've searched the ss.gov site and I was unable to find "Lyme" Disease or any co infections listed.
Even my SSD atty is not completely sure if it is on the list and needs to research.
My mother said she read somewhere it was in the process of being added but was unable to find it.
That was excellent advice. I remember you telling me that two months ago and I burned it into my mind. Yesterday I had a phone interview with Social Security and I was extremely prepped because of what you said. I had a list of 19 symptoms and was able to explain how each impacted my ability to function in my work. Had you not said that, I would not have been prepared. I had doctors names, dates, SPECT scans, everything. I do believe I overwhelmed the rep as our phone consult took almost two hours.
He placed me on hold three times- I think someone was on his case about ending the call and he actually asked me to stop spelling doctors names with "P" as in Paul and "T" as in Tom and explained he needed to hurry up and answer incoming calls. On the very next question, I answered without helping him and just gave him the letters and then he ask me to repeat, "Was that "T" like "Tom?"
Boy, I was frustrated and explained, "I understand this is taking quite a bit of your time, and my purpose of spelling the letters out for you and announciating the letters is to shorten your call, to make things run quickly.
Oh, I was really angry but was consistent in my tone. What a slap in the face considering this was my two hours after 20 years of paying into social security. I didn't mention that of course.
At any rate, it's done and I met with my SS disabilty atty today. I like her. Very kind lady.
Ticker, even though my many years of paperwork and testing was ready, I guess I still felt insecure knowing that just having "Lyme Disease" may not be recognized as a chronic condition due to the ignorance and denile by those who have so much influence and power over us. Even though I have two co-infections and abnormal SPECT results both in 2000 and 2007, I left feeling this disease was not on "the list" for SS disability benfits.
Thanks for your time and response. You really put in a great amount of time even though your life and health has improved so much. Most people would walk away and want to leave it behind and use the time they have to do other things. You are definitely special!
I am glad you felt prepared for the phone interview you had. I understand feeling humiliated. Did you tell them about the co-infections also?
It is good you like your attorney. You may want to research and print out articles, especially medical journal articles, that discuss Lyme and the co-infections you have. This may help your attorney to see how serious and debilitating these diseases can be. You may also want to tell her that Lyme disease is the second fastest growing infectious disease in the US after AIDS.
Thank you for your kind words! I am still being treated.
Hi Rodney, I went through about 8 years fighing with workmen's comp and letting them degrade me and send me to doctors that were 4 hours away...I had sprung my neck and back the week after I was bitten. I told every dang doctor about the tick bite...but of course NO ONE wanted to treat me for the tick bite but THEY loved giving me pain pills, antidepressants, steriods, upers, downers....ect....
Anyway I finally found a doctor that would treat me for LYME...I then took all of my doctors records to the SS office and the lady I saw put me on it right then and there!
My diagnoises...gee everything thing form Alsheimer's, ADD, bone spurs, carpel tunnel, tendonitis, CFS, Fibro...MENTAL problems...bones deteriationg...and on and on and on....
My suggestion would be for you to take all of your doctors records to them.
Be prepared though that living off of 800 a month is pretty tight...ugh!
OK, thanks Jo. That is what I was looking for. So I have "one" person for sure that has been approved for SSD benefits with a diagnosis of "Lyme."
Were you also approved under other co-infections? I think I remember reading you had at least one of two, Babesia and Ehrlichia.
I'm in the same boat. I really need to find out about SSD benefits. I'm not sure how to go about it. But if you find out info passing it along would be great. It sucks because I'm sure we're sicker than lots of people on SSd. Good luck. mc
The day I walked in to talk face to face with the lady for my SSD. I weighed around 100 pounds, neck brace, wrist braces. Pale...Like the doctor that finally started treating me said...I looked like something the cat drug in....
I can't rermeber if they sent me to their doctor and shrink before or after that appt. I do think it was before...but oh my gosh when I went to the shrink all I could do was cry and cry and cry...I had lost everything pretty much at that pont, husband, job, baby, friends, family started backing off...My Daddy had passed away...ugh...it was a very low point, sides dealing with trying to get some help...
Have they sent you to their shrink yet???? Or to their doctor???
Have you brought up what you went through think it was a year ago going to the hospital??? You really really need to get copies from every doctor and facility that you have been too.
Rodney it doesn't really matter I don't feel what diagnoises they give or gave you ....Just as long as you get on it.
No I only had pendings on my co-infectiions, but I had all of the symptoms of Babesia and Bartonella. The scratch looking marks and fevers, sweats,...MIGRAINES 24/7 for about 8 years...
I wish you lots of luck! From reading your post for the last couple years...I myself don't see why you wouldn't beable to recieve it.
So I take it this means your job did fire you? If so you got on unemployment atleast right? Or State Disablitlty??
Hi Jo. I have not been terminated yet per se' but my six months of STD benefits runs out in eight weeks and after that I don't think they have a choice but to terminate me.
Also, now that I am being treated with IV and orals, the herx is almost unmanageable to live with. All of my symptoms have increase by two or three times...I have had to back off the Zithro just because I can't tollerate the shaking and anxiety non stop every second of the day with no break until I go to bed...and even then I still have very disturbing dreams if my detox bath did not get most of my system cleared out.
You are right about the hospital visit last year.
A lot of my records date back to 1992 where I only had IGM antibodies but still was being treated...those docs are gone...so I just have a lot of the info from the past couple of years. The guy that interviewed me over the phone actually got to the point where he said he could no longer take any more info because he had to get off the phone to answer incoming calls. I was pretty frustrated with that one.
Thanks for your feedback and I'm glad I already have the atty..she is so kind.