Why It's Hard to Diagnose Lyme

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!]