IS THERE PROOF IN THE PUDDING?
Recently my husband was denied disability because of the lack of proof that he 'officially' had Lyme Disease. As I wrote in my first post, the Lyme doctor we found 'diagnostically' diagnosed him. This was after droves of tests (blood, scans, x-rays...etc) were ran and came back clear. In light of all of this, the symptoms pointed strongly to Lyme and Borrelia. We brought this denial of the disability to our lawyer and since the specialist in heart, pulmonary, hematology plus others said there was nothing wrong and the blood test for Lyme came back negative the lawyer said with his experience in disability that Brad's chances of obtaining disability are none. Until we can acquire blood tests to prove to the panel of doctors (and whomever else) we might have a minimal chance.
Yet, Brad's tests were ran using the Western Blot; therein lies the problem.
"When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management." [http://www.ilads.org/lyme_disease/about_lyme1.html] As well as for us, this test is quite expensive and our doctor told us since we do not know 'when' Brad was bitten and also the protien bands will likely not surface, all depending on the time of the month when some levels rise and others lower.
Brad has chronic Lyme and this is even more disagreed on in the medical field with many doctors (including the one's he saw while we were in Chicago). Read this quote from http://articles.ky3.com/2012-04-05/chronic-lyme-disease_31296702; "The controversy is more complex than whether or not it exists in ...The skepticism comes more in with the later stages. A lot of disagreement in the medical community about whether or not late term Lyme disease exists," said Fansler."
All in all, this attributes more to the frustrations of this crazy disease. It also has made our personal lives even more interesting (to say the least). Brad is not able to concentrate, suffers greatly with tremendous pain and is exhausted. This obviously means he is not able to hold down a typical job. Praise God he preaches on Sundays as we pastor. He makes hospital visitations and various meetings. We are at a major turning point now...we are confident we are in the Hands of God and with His Strength we will be-MORE THAN CONQUERORS!
We know we are not alone in this battle. It feels like it though, being in this
rather unique situation how it has placed us in a hard place financially.
Our hope is just to help (no matter how minuscule it may be)anyone who may be suffering with Lyme.
Brad and I would love to pray for you. You can leave your request in a comment below. We promise we will pray.
I wrote this in response to the disability denial and many not understanding why, suggesting we get a new lawyer or that we try again. We were warned that it would be a miracle to get disability with having Lyme, from what our doctor said: "it is rare!"
GOOD READING:
1.) http://www.canlyme.com/apr1903.html Rd. this patient's story and the research discovered.
2.) http://articles.ky3.com/2012-04-05/chronic-lyme-disease_31296702 Chronic Lyme hard to discover. This individual spent $4,000 for blood tests and other and it resulted in nothing. Yet, was diagnosed with Chronic Lyme.
3.) http://lymedisease.org/news/touchedbylyme/ssdi.html This lawyer is an advocate for Lyme's Patients and specializes in disabilty and appeals. [We are going to contact her!]
Wow. Thanks for sharing what has been going on. I'm sure it was very discouraging to hear this news from your lawyer. And frustrating. So sorry for all you are going through. It is hard to understand but, thankfully, we do have hope in the Lord. I know He will continue to be with you, to strengthen you, and to provide for your needs. I will continue to pray.
ReplyDeleteHey ~
ReplyDeleteI just ran across your blog. I'm so sorry to hear of your husband's battle with this horrific disease. I would love to talk to you and hopefully help your family beat this illness!
My niece suffered with Chronic Lyme for over 13 years. She was "officially" diagnosed when she was 21. She received Hyperbaric Oxygen Treatment in June of 2009, when she was 24, and got her life back! She is now 27 and just got married this past April. She is doing great! God provided us with EVERYTHING we needed to make her healing possible! It, then, became a passion to help Lyme victims and learn everything possible, and to educate as many people as I could possibly reach, about this debilitating disease.
My number is 850.596.0186, if you would like to talk. I'm not sure where you are located. We are in North Florida...where Lyme "doesn't exist". ;o) I don't know how I ran across your page, but I do know THIS...God puts people in our paths, so that we may help others. I can only imagine that THIS is the reason!
Hope to talk soon! God bless ~ Melea Flanary
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ReplyDeleteMy husband did talk with Barbara Arnold, an attorney who practices disability law in Berkeley, CA and is a Lyme Disease Advocate. She only does practice in CA and cannot help us in representing us legally. She gave a list of disability lawyers (we had one who said he just could not take the case). In that none of them have form of knowledge on representing a Lyme Patient. Yet, she was so kind to tell us that she would help him anyway she could.
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He would be much more likely to get disability if he went with a mental diagnoses rather than physical, much less to prove.
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