posted
My SSDI hear is next week, my lawyer just told me its all pretty much riding on if we can educate the judge on the importance of lyme being a clinical diagnosis since I don't have positive labs.
Can anyone direct me to the best publications out there I can forward to my lawyer. My head isn't letting me find them.
Thanks everyone.
Posts: 219 | From pacific nw | Registered: Jun 2009
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
I was under the impression that SSDI depended on your inability to do things, not on diagnosis. Have you adequately documented your disabilities?
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Definitley have documented all disability and my file is huge but the lawyer says most of the time the judges hands will be tied if there is no definitive positive testing.
Thanks so much for the links, I'll send her these.
Posts: 219 | From pacific nw | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not sure what state you are in (either Washington or Oregon, I assume) but if you are in Oregon, you will likely not be able to have lyme influence SSD action.
These are local people making the decisions. Lyme is "illegal" in Oregon by all official accounts. It simply does not exist, but most especially not in the state of Oregon.
If in Washington, it's a bit more reasonable.
Still, it's not the diagnosis that will help with SSD award but what you can or cannot do. Symptoms (that need not have a firm diagnosis) matter, too.
I'm sorry that your attorney is grasping as this most unlikely straw right now - he should have had ALL such helpful literature at his fingertips long ago.
HE or SHE should be doing this research and gathering for YOU, his client. I'm sorry that he's making you do all the work.
I would advise getting a better attorney, one is is LL, as this one is clearly not LL - but there is no time for that right now.
Might someone in your local lyme support group have the name of a LL atty who can consult with yours?
Focus on what you can and cannot do - not lyme. Even if they had the perfect article explaining chronic neuro-lyme in absence of test, they might not be able to accept it.
Instead,
Focus on other physical findings (Encelphalitis? Dizziness, vertigo? pain? fatigue? weakness? mood shifts? Hearing sensitivity? extreme tinnitus? Even chemical sensitivity? Vision? Endurance?)
Vestibular testing can be key if you have any balance issues. A sleep study can help, too, if sleep issues are complex.
How would your atty make a case for someone with CFS? There are some things such as Sheila Bastien's specialized neuropsych testing that can help. There are couple CFS-educated attorneys in PDX, if that is where you might be.
Those with CFS and their attorneys know how to document serious symptoms in the absence of traditional medical tests.
For instance, a QEEG done in line with Myra Preston, Ph.D. can document impaired brain function for those with CFS or lyme. Your attorney should know that and should have suggested you get that.
But only a few are trained to do the test correctly and it's out of pocket. Still, that QEEG was one good document for me, along with vestibular testing that showed Severe sensory dysfunction.
While we all know lyme is not caused by a mood disorder, lyme can cause a mood disorder.
Do not hesitate to be totally honest about any mood issues. I tried to hide mine and I knew mood was not the cause but, in truth, my mood was severely rough and tumble.
Their psych diagnosis was not accurate, though it did help me with SSD and that kept me alive long enough to finally get the lyme testing and other key testing to prove all the systems that were kaput. All I had when I applied for SSD were diagnoses about mood and fibromyalgia.
IF you have a previous diagnosis of fibromyalgia (as many with lyme were first told), SSD judges may listen to that as "fibromyalgia" (as they call it) can be very severe in some cases.
Ultimately, when you communicate with the SSD judge, just be honest & open. I'd like to think that will let the severity of your health challenges show through.
Good luck. -
[ 09-07-2012, 06:14 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
TOUCHED BY LYME: Filing for disability benefits when you have Lyme disease - 12th August 2011
Guest blogger & Lyme advocate Barbara Arnold, an attorney who practices disability law in Berkeley, CA, explains some of the factors involved when a Lyme patient files for SSDI.
------------------------------
Resources for Disability, Insurance, Dealing with HMOs
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- From a thread here the other day posted by Neil M. Martin: -----------
Published online 2008 September 25. doi: 10.1186/1742-2094-5-40
PMCID: PMC2564911
PERSISTING ATYPICAL AND CYSTIC FORMS OF BORRELIA BURGDORFERI AND LOCAL INFLAMMATION IN LYME NEUROBORRELIOIS
[see authors at link]
The long latent stage seen in syphilis, followed by chronic central nervous system infection and inflammation, can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum.
We investigated whether a similar situation may occur in Lyme neuroborreliosis.
Method
Atypical forms of Borrelia burgdorferi spirochetes were induced exposing cultures of Borrelia burgdorferi (strains B31 and ADB1) to such unfavorable conditions as osmotic and heat shock, and exposure to the binding agents Thioflavin S and Congo red.
We also analyzed whether these forms may be induced in vitro, following infection of primary chicken and rat neurons, as well as rat and human astrocytes.
We further analyzed whether atypical forms similar to those induced in vitro may also occur in vivo, in brains of three patients with Lyme neuroborreliosis.
We used immunohistochemical methods to detect evidence of neuroinflammation in the form of reactive microglia and astrocytes.
Results
Under these conditions we observed atypical cystic, rolled and granular forms of these spirochetes. We characterized these abnormal forms by histochemical, immunohistochemical, dark field and atomic force microscopy (AFM) methods.
The atypical and cystic forms found in the brains of three patients with neuropathologically confirmed Lyme neuroborreliosis were identical to those induced in vitro.
We also observed nuclear fragmentation of the infected astrocytes using the TUNEL method. Abundant HLA-DR positive microglia and GFAP positive reactive astrocytes were present in the cerebral cortex.
Conclusion
The results indicate that atypical extra- and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in chronic Lyme neuroborreliosis.
The persistence of these more resistant spirochete forms, and their intracellular location in neurons and glial cells, may explain the long latent stage and persistence of Borrelia infection.
The results also suggest that Borrelia burgdorferi may induce cellular dysfunction and apoptosis.
The detection and recognition of atypical, cystic and granular forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form.
Copyright � 2008 Miklossy et al; licensee BioMed Central Ltd.This is an Open Access article distributed under the terms of the Creative Commons Attribution License
(http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
------------ Go to Neil M. Martin's thread where he's posted a lot of background to this article:
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I can see why a diagnosis might be needed also. Yes, it's all about having a disability, meaning, what you cannot do. But, you need to demonstrate that it is permanent, and I would suspect without a diagnosis, it would be harder for someone to feel it was proven to be permanent.
Posts: 1927 | From se usa | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Dizziness can be a the diagnosis, though. If that is a symptom, it can serve where lyme may not fulfill their demands. Chronic vertigo is certainly a dx that holds water.
You've posted before that you've had dizziness, ongoing. You also posted that you have had encephalitis. If your doctor verifies that is chronic or frequently recurring, that dx is important.
The SSA has a code list for SSD determination - your atty should have that list of the approved diagnoses to see if your symptoms or other dx are on that list. I bet some are.
SSD rarely will say anything is permanent, though, it does need to be determined that it's unlikely to change in the near future.
Nearly everyone is on a two year provisional "award" and then a basic questionnaire to follow. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Yes, dizziness and encephalitis along with heart issues, anxiety disorder etc are all in my file. Lawyer was concerned that with my brain issues and a couple negative mri's it might be an issue. but I do have an abnormal spect.
I forwarded all the links on to her. My file looks good otherwise, she just needs to be strong on the fact of clinical diagnosis.
I'll let you know how it goes on tues. Sometimes they make you wait for a decision but sometimes you find out right away. Fingers crossed.
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