Lyme Disease & Disability in Kansas

We did it! We FINALLY got approved for disability! It took almost exactly THREE YEARS to get approved and will take another 6-8 weeks before we get any money but HALLELUJAH we finally got disability benefits!!!

So, in our fight for disability our time line looks like this...

• January 2006- Scott is no longer able to work.

• March 2006- Scott was diagnosed with Lyme Disease instead of MS

• March 2007- We filed for disability.

• July 2007- Hired a disability rep.

• July 2007- Off The Record request thru ODAR.

• September 2007- 2nd Off The Record request thru ODAR.

• October 2007- Found a local LD doctor.

• December 2007- Started 2 a day IV treatments.

• June(ish) 2008- 3rd Off The Record request thru ODAR.

• July 2008- Got our KS rep involved in our disability case.

• October 2008- Fired worthless disability rep and hired a new one from KC.

• December 2008- Scott's 1 year anniversary at the IV clinic

• May 2009- We received a letter from SS saying we finally had a hearing for July 9th.

• July 2009- 1st disability hearing. The judge decided she needed more info. on LD so she set up another hearing for August. 19th.

• August 2009- 2nd disability hearing with a medical expert and a vocational expert. We are told that we will have a decision within 6-8 weeks.

• October 2009- We get a letter saying another hearing has been set and will be the day before Thanksgiving. The next week we got a call from our lawyer saying the judge had called her and said we didn't need another hearing because she had made her decision. We are told it would take 4 weeks to get the decision.

• November 2009- We called our lawyer and were told that our decision had to be sent to a Decision Writer who would write up the judge's decision and it should be sent any day.

• December 2009- We called our lawyer again, right before Christmas and they in turn called ODAR. ODAR said that they would try and mail our decision before Christmas...

• January 5, 2010- Our letter was started.....

• January 14, 2010- Our letter arrived in the mail and Scott was too nervous to open the letter so he had me do it. From this point we had been waiting for this decision for 2 months shy of 3 years but it has been 4 years since he was able to work. The letter is 16 pages long and discusses everything....but the most important part is that the judge gave us a partially favorable decision. It is partially favorable because instead of back dating the disability to the date we filed, she made it retroactive to Oct. of 2007 when we had more lab tests and evidence of the illness.

That brings us to today, Jan. 28th. We called the SS office the week we got our letter and were told that it will take 6-8 weeks for the decision to be entered and before we would get our first monthly check...so all in all it WILL BE 3 full years! HOLY COW! No wonder families end up losing everything during the process! Kansas is one of the worst states when it comes to pushing along disability cases and the average backlog is 15,000! It took 5 months for our decision to be written up, submitted and sent to us. THAT IS BEYOND RIDICULOUS!!! We have also heard that it will take about 6 months for our backpay to be released so we are anxiously awaiting that check...where we can finally pay off the debt we have been unable to pay off for the past 3 years.

Now that we have finally been approved for disability, I am considering adding more posts about Scott to our family blog. He feels vindicated and justified with his new title and knows it is one step closer to getting back to zero. He no longer needs to defend his illness to those who don't believe him because the State of Kansas has agreed with him and approved his benefits. He no longer feels the need to prove to them that yes, even with good moments, he is still disabled. To celebrate this GIGANTIC victory, we made him a red velvet cake with an apricot sour cream frosting. The boys lit the sparkler candles and we sang, "Happy Disability To You, Happy Disability To You, Happy Disability Dear Daddy, Happy Disability To You!" It was a sweet little moment in a long battle for Health, Disability and Credibility...

Lyme Disease Tests

*borrowed from heallyme

EVERYTHING YOU ALWAYS WANTED TO KNOW ABOUT THE CD57 TEST

By: GINGER SAVELY, RN, FNP-C

From coast to coast, frustrations abound among patients and
clinicians regarding the diagnosis of chronic Lyme disease.
Misinformed health care providers in Texas and surrounding states
consider the infection rare and non-endemic. They are inclined to
rule out Lyme disease based on the negative result of a laboratory
test that, unbeknownst to them, is highly insensitive. In the absence
of a reliable laboratory test or adequate experience in the
recognition of the varied and complex presentations of the illness,
most clinicians are ill-equipped to diagnose chronic Lyme disease.
Many patients suffer needlessly for years, hopelessly lost in the
maze of the health care system, looking for answers and enduring the
skepticism of practitioners inexperienced with the disease’s signs
and symptoms.

What is needed is a better Lyme test or some other objective measure
to persuade the practitioner to consider the diagnosis of chronic
Lyme disease. Enter the CD57 test! You may have heard the term “CD57″
tossed around on chat groups, or your Lyme-literate health care
provider may have even explained the test to you in one of your
moments of brain-fogged stupor. What is this number that sounds more
like a type of Heinz steak sauce than a lab test, and what in the
world does it have to do with Lyme disease?

Let’s start by going back to basic high school biology. You may
remember that white blood cells (a.k.a. leukocytes) are the
components of blood that help the body fight infections and other
diseases. White blood cells can be categorized as either granulocytes
or mononuclear leukocytes. Mononuclear leukocytes are further sub-
grouped into monocytes and lymphocytes.

Lymphocytes, found in the blood, tissues and lymphoid organs, attack
antigens (foreign proteins) in different ways. The main lymphocyte
sub-types are B-cells, T-cells and natural killer (NK) cells. B-cells
make antibodies that are stimulated by infection or vaccination. T-
cells and NK cells, on the other hand, are the cellular aggressors in
the immune system and are our main focus in the discussion that
follows.

Let’s pause a moment and introduce something you probably never
learned about in high school biology class: CD markers. CD, which
stands for “cluster designation”, is a glycoprotein molecule on the
cell surface that acts as an identifying marker. Think of comparing
cells as comparing people. Humans are made up of innumerable
superficial identifying characteristics (such as hair color, eye
color, etc.) and so are cells. Cells probably have thousands of
different identifying markers, or CDs, expressed on their surfaces,
but 200 or so have been recognized and named so far.

Each different marker (or CD) on a cell is named with a number, which
signifies nothing more than the order in which the CD was discovered.
On any given cell there are many different cluster designation
markers (CDs), giving each cell its unique appearance and function
but also linking certain cells by their similarities (like grouping
all people with brown hair or all people with blue eyes). Cells that
have a certain kind of CD present on their surface are denoted as +
for that CD type (e.g., a cell with CD57 markers on its surface is
CD57+).

NK cells have their own specific surface markers. The predominant
marker is CD56. The percentage of CD56+ NK cells is often measured in
patients with chronic diseases as a marker of immune status: the
lower the CD56 level, the weaker the immune system. You may have
heard Chronic Fatigue Syndrome patients talk about their CD56 counts.
A smaller population of NK cells are CD57+.

A below-normal count has been associated with chronic Lyme disease by
the work of Drs. Raphael Stricker and Edward Winger. No one knows for
sure why CD57+ NK cells are low in Lyme disease patients, but it is
important to note that many disease states that are often confused
with chronic Lyme (MS, systemic lupus, rheumatoid arthritis) are not
associated with low CD57+ NK counts. The good news is that for most
Lyme patients the CD57+ NK level increases as treatment progresses
and health is regained.

CD57 markers can also be expressed on other kinds of cells, including
T-cells, so it is important to distinguish between CD57+ T-cells and
CD57+ NK cells. Clinicians need to be aware that many testing
laboratories claiming to perform the CD57 test are actually looking
at CD57+ T-cells rather than CD57+ NK cells, which are the cells of
interest in chronic Lyme disease.

In order for a testing laboratory to measure the CD57+ NK level, it
first measures the percentage of lymphocytes that are CD57+ NK cells.
Then an absolute count is calculated by multiplying that percentage
by the patient’s total lymphocyte count. The standard normal range
for the absolute CD57 NK count is 60 to 360 cells per microliter of
blood. This wide range was established based upon test results of
hundreds of healthy patients. By these laboratory standards, a test
result below 60 cells per microliter would be considered below normal
and therefore associated with chronic Lyme disease. However, a recent
study of my Austin patients has led me to believe that 100 cells per
microliter is a more reliable threshold separating Lyme patients and
healthy controls.

When Drs Stricker and Winger discovered that CD57+ NK cells are low
in chronic Lyme patients and tend to increase with patients’ clinical
improvement, an opportunity arose for Lyme-literate practitioners to
utilize a handy tool to aid in the diagnosis of chronic Lyme disease,
to follow treatment progress, and to determine treatment endpoint.
Just as AIDS patients have always held great store in their CD4 T-
cell count, Lyme patients now have a fairly reliable marker of the
status of their illness.

It is important to remember that the CD57 result is just a number;
far more important is the patient’s clinical status. An old professor
of mine used to say, “treat the patient, not the lab test!” There is
still much we do not know about the CD57 marker and what other
factors may lower or raise it. However, overall, the CD57+ NK count
is a useful tool in diagnosing and treating chronic Lyme disease in
most patients. As a measure of immune status, it provides an indirect
measure of bacterial load and severity of illness. Furthermore, in a
patient who has a negative or indeterminate Lyme test but is highly
suspect for the disease, the clinician may utilize the CD57+ NK count
as one more piece in the complex puzzle of a Lyme disease diagnosis.

Postscript: If you would like your health care provider to order the
CD57 NK test for you, your blood sample needs to be drawn into an
EDTA tube (lavender top) on Monday through Thursday and sent
immediately to either LabCorp in Burlington, NC, or Clinical
Pathology Laboratories (CPL) in Austin, TX. LabCorp and CPL are the
only two labs that perform this test properly. Quest does NOT. The
LabCorp test code is #505026 and is named HNK1 (CD57) Panel. The CPL
test code is #4886, CD57 for Lyme disease. The test is time-sensitive
and must be performed within 12 hours of collection, so blood should
not be drawn on a Friday or results may be inaccurate.

Lyme Light Podcast

The third episode of the Lyme Light Podcast is now available for download from itunes, zune, yahoo and google. You can listen to it from the website at http://sdawson.podbean.com/ or subscribe to it to listen on your ipod.

In this, the third episode of Lyme Light, I have a wonderful conversation with my good friend and fellow Lymie, Dr. Bill. This is my first interview with a non-family member. Dr. Bill lives a whole state away so we did the interview over the phone. I’m still trying to figure out the best way to do this on no budget. So please bear with me on the sound quality. Dr. Bill has a lot of great things to say and offers a unique perspective on life with Lyme disease because of his medical background. I spent months sitting next to Dr. Bill while he was treatment with me and I hope you will discover what I did; that he is a wise, insightful and endlessly optimistic man.

After you enjoy this podcast, please don’t forget to leave me your comments and critiques at http://sdawson.podbean.com/. Also, if you use iTunes, please don’t forget to give Lyme Light a rating in iTunes. It will go a long way towards securing more listeners.

Thank you and enjoy!

P.S. The audio is a little rough on the latest episode as we are experimenting with cell phones, recording and out of state interviews. We really appreciate Dr. Bill's perspective on living with Lyme Disease.

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