posted
Denied first time they didn't even have LLMD on list of docs but said " I have been treated for lyme" and anexity and deprssion in only secondary to the disease?
If I been treated for it than what's up with the depression and anexity being secondary to it. Doesn't make sense, guess according to them I don't have lyme that would mean I don't have the other things, no?
I'm trying to make sense out of a governments foolish statement. Must be the lyme or some other diease I don't have???
Any suggestion on how to reapproach matter would be helpful. Thinking of getting lawyer....
Thanks
[ 30. August 2008, 11:51 AM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
| IP: Logged |
posted
I went through the horrible process of getting approved for SSD, so I sympathize with you. I was approved in 2004. It took me 2 years - 2 denials, then the final hearing (at which time I had a lawyer).
At that time, I had not been diagnosed with lyme. I had the assorted "syndrome" diagnoses - fibromyalgia, chronic fatigue syndrome, IBS, etc. Like you, I was told the depression was secondary. That's actually good, in the sense that they are acknowledging that you are not sick because you are depressed, rather you are depressed because you are sick.
The illnesses I was diagnosed with at that time also were not on their list of approved disabilities. That's why it went through to the hearing stage. Most people are actually denied the first and second time.
I would highly suggest a lawyer. They don't charge anything up front, though they do take a cut of your initial settlement (the back pay from the time you filed). It's worth it and a good lawyer will be able to point you toward the right doctors.
It's a stressful process but stick with it. Go to lots of doctors and do lots of complaining, whether that's your style or not. The more you complain, the more that's documented about your illness.
Good luck!
Posts: 8 | From New Port Richey | Registered: Jun 2008
| IP: Logged |
posted
Thank you knowing my luck they'll maybe find a cure.
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
A cure would be absolutely wonderful but it may be a while. And, this is a long process.
But going to lots of doctors complaining will do no good at all. In fact, it will hurt your case tremendously.
Most doctors don't have a clue and you will be seen as "doctor shopping" and a "difficult patient" - labels that you cannot afford. You will also been seen - by them - as insincere if you want them to support a claim for SSD right off the bat. Most doctors simply won't do that.
Find a doctor who is truly educated in chronic lyme.
Are you seeing a LLMD ? (And do you have a GP who understands all this?)
Are you getting treatment? (sounds like you did but it did not help?)
Have you been evaluated for coinfections or other chronic stealth infections?
And, beyond that, SSD or SSI is based not on diagnosis, but on what you can or cannot do.
I think you need a better doctor - not just to verify the extent of your illness (or disability) - but to help you on a path to getting better.
As that might take a while, that doctor can help guide you in the process of deciding if you can - or can't work - right now and offer the proper diagnostics to support your request from the SSA.
Have you had a sleep study done?
Yes, an attorney with skill and knowledge of lyme, CFS, FM, anxiety and depression should be able to help you explain your symptoms with what the SSA needs to see for this to make sense for their methods of measurement.
--
You might want to edit the headline for your thread here to say something like "Help needed with SSD request" I could not even tell in your post until I read a reply what you were talking about. (And, that, I'm know, is part of the problem with the "brain fog").
No problems sleeping did sleep study. I have allot of inflammation, warmth, possible autonomic neuropathy, eyeball swells which was happening everyweek until steriod injections after eye biopsy because eye didn't heal right. Like I said to list all my symptoms it would sound like a Stephen King Novel.
Yeah doctors think it's complaining until I show then picture of swollen eyeball and results of biopsy by a Doctor at MERSI in MA. Some catch on it's systemic some don't even know systemic diseases manifest through the eyes. Probably like the ones who reviewd my case.
MERSI DOC said biopsy revealed a very rare opthamolic pyogenic granuloma, all of the doctors I spoke to didn't even know what that meant or was....and only 3 or 4 knew what a CD57 panel was including an hematologist and immunologist, ID doc, rheumatologist, GP YADA, YADA, YADA. (If I'm correct granuloma's usually form because it is housing a fungus, viral infection etc...)
Did you ever read the article in men's health about the 26 year old who went to 30 doctors who said it was all in his head? At 26 you can't be ill, yada, yada, yada
Finally after begging he was able to get into see the 31st, a neurologist in New York who did some test, DNA, biopsies and bang he had some rare disease which was treatable by IVIG threapy...
He mentioned Harvard Doctors which makes me think what else Boston area. I go to Beth Isreal Monday by referral of MERSI Doc. MERSI Doctor is an Ocular Immunologist very well known throughout the states in his field. Also has background in College of Rheumatology.
He did not want to spear head my threapy and referred me to a Doctor at BI. If it was just my granuloma, he may have treated me but because of my many symptoms, well hopefully it will part of a cure/treatment. He believes multi disciplne/multi treatment will be necessary. He didn't know about West Nile at the time. Lucky me huh...
I have to go see other docs unfortunatley, coffee ground sputum, brown saliva, back pain that feels like someone sticking knife in back...
Eyes that turn red and head gets warm when I lay down...I've got no choice. MERSI Doctor says may need immune supressant threapy.. because eye biopsy didn't heal right?
Who reviews the results for SSDI, some nurse practitioner probably who understands nothing.
Often wonder if my LLMD is confused with the many symptoms I exhibit. I am still being treated for lyme.
You're words have iron in them but, What am I to do give up??? Hopefully BI can sought it all out and is open minded. How many times I thought that.
You're right should get new GP. I PM'd you need more suggestions thanks you've been helpful.
[ 30. August 2008, 01:39 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I can't answer all your questions but, NO, you are not to give up.
I just posted a bunch of links at your post in the medical forum.
AND - the steroids for the eyes. While life or vision-saving, steroids have their place, with lyme very specific methods are required.
Steroids can make lyme blossom if the correct antibiotics are not also used.
you can see more at the ILADS Treatment Guidelines at www.ilads.org
I would not to immune suppression until you see a LLMD.
You have 72 posts, so you've been here a while. Are you being treated for lyme?
By a good LLMD who is ILADS' educated? A good LLMD will know how to address an overactive immune system, too.
-
I am sorry I don't have more answers for you. Others will.
More people are denied SSI and Social Security Disability than are allowed benefits the first time they apply.
In a simplified step by step guide Mike Davis gives disability applicants the crucial information they need to know and exactly what to do to make the best case the first time around.
Here is the inside scoop on what the decision makers are really looking for and how you can help them to get it.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I highly recommend that you get an attorney ASAP for your SSDI claim. Check with your area support group for recommendations.
In our area the leaders are not allowed to make recommendations, but the members can, so if possible attend a support group meeting, or look for a Lyme group in your area under Yahoo groups.
I would suggest that you post in Seeking a Doctor that you are looking for a Lyme Literate ophthalmologist. I know there is at least one, perhaps more.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic