posted
I've been denied for longterm disability for my Lyme disease.
The reason I received was that the only positive test I had was back in 2010 with all 2013 tests negative. So I can't have lyme.
I am working on appealing right now but need the medical backup to prove my case because they are not listening to my llmd.
I know I have read articles in the past about the high level inaccuracy of current testing measures and also how being on current antibiotic therapy can also cause a false negative result. I just need those article references so I can include them in my appeal.
Also if someone has articles regarding the current issue regarding the CDC and falsehoods that is currently going on with dr sapi etc.
I need reputable sources from medical journals, or government websites etc. they will not accept blog posts or individual personal website references.
I am bedridden right now with severe neuro involvement and terrible Brain fog and memory loss. Any help with this is greatly appreciated!!!
Posts: 157 | From Colorado | Registered: Aug 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Not sure if this is considered an acceptable source:
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Get an attorney who is ILADS "literate" - talk to all the area lyme support groups around. You need an attorney for now matter how many articles you can pull up, certain legal precedents will come into what will be accepted, etc.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. - How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
PERSISTENT, CHRONIC LYME discussed -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Of course, it would be nice to prove to them . . . still . . . the diagnosis of lyme really has nothing to do with it, or at least not the diagnosis. It's what you can or can't do with you body and mind.
You have various neuromuscular conditions as a result of illness that has taken a chronic course. Whatever that is called may not not matter so much
(and we know that the medical world can't know all there is know so if they want to think there is just no single name for this yet, fine),
there are so many variables in any diagnose between patients of ANY diagnosis, though . . . it's all about abilities and what is possible and what is not for your body under certain circumstances. Body, brain / mind / emotions.
There are other tests that can help support how all that is for you. A QEEG, vestibular testing, etc. could be of help. More detail to come. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See the DVDs of the ILADS conferences where this matter is discussed. Links are in one of these sets:
posted
I have a disability attorney though not ilads literate. I'm helping her with the appeal process.
Posts: 157 | From Colorado | Registered: Aug 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Can she connect with an attorney who is ILADS literate? Even by phone. That would be soooo very important for her to have at least a 30 minute conversation -- after she watches the DVD set by the attorneys at the ILADS conferences.
You cannot possible teach her all she needs to know. The DVD set is very good. But she also needs a mentor in her field who has gone into this area . . . and all this will help her be a better attorney.
It's her job to become better educated. She should be doing this kind of homework, not you.
She should know what other kinds of tests may help besides for lyme. Vestibular testing is one that is most helpful, IMO.
Myra Preston's work with QEEG has been accepted in court by the SSA to document disability, too, regarding cognition for those with "CFS" and for the stuff that is connected (all out of my words now, using "stuff" is all I can think of).
But, she needs to be connected and know where to get the articles / documents required. She needs to connect with other attorneys who ARE ILADS "literate" in regard to their field.
That is her job to find and develop these research bridges & outlets. You can give her some input but if she cannot do her job, find one who will.
And if she's wanting to learn, great, still, she should be doing the heavy lifting here. I've been looking at articles for years and saved many to my files but I would not be able to save my own skin were I to be required to find what I needed. I still don't know where to look, what the "law" will accept, etc.
If she is willing to build connections, great, if not, she's not going to be the help you need and that you are paying her to be.
I am so tired of hearing of slip shod doctors who are so lyme ignorant that it just makes me angry to also hear that other professionals expect their clients to do all the work for them just because they are not lyme literate. Hope she wants to grow & learn.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
More than anything you need a doctor to write up your need for disability accurately and in great detail. You're doctor's input must be persuasive much more so than any attorney.
Also, instead of just focusing on Lyme Disease which we know is difficult to prove by way of testing, he should be focusing on your symptoms and your inability to function/work.
What does it matter what is disabling you? If you are bedridden that should be enough for you to be entitled to disability. In many cases disability for Lyme is granted on the basis of a central nervous system disorder, not necessarily Lyme Disease, and it is possible that the origins of it can be unknown. Talk to your doctor about what his or her reports states and how to broaden it to encompass the wider range of symptoms and possible other diagnoses stemming from the Lyme Disease.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| 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