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disability hearing end of the month

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Posted 3/10/2009 11:12 PM (GMT 0)
Hi everyone,

I have my disability hearing at the end of the month.  Wondering if anyone can give me any pointers.  My only proof that I have lyme is testing on band 23, and a bowen qribb test that was skyrocketed at 128.  My llmd has diagnosed me with chronic lyme and treats me.  I do have an attorney, and will be meeting with him on Monday.  How in the heck are you supposed to describe the 50 symptoms that I experience and are ever changing.  Any help would be greatly appreciated.  Thanks.

Joanne

Posted 3/11/2009 3:03 AM (GMT 0)
Hi Joanne,

If you drop me an email I can share my experience with you.
Posted 3/11/2009 9:27 PM (GMT 0)
I am curious about your Bowen Q rib. I havent seen that anyone else here had that test done. I had that done in 2005 and mine was also 128. Interesting. The doctors here dont think that test is reliable, did your LLMD order Bowen??  I was told they were out of business, not sure there is any truth to that. Is your LLMD diagnosing your Lyme on those results? Thanks   D

Posted 3/11/2009 11:47 PM (GMT 0)

Hi there,

 bowen lab became central florida research...  I dont know if they are still around. 

When I intially got sick, my pcp was perplexed.... he ran all the lyme tests, and they were negative.... I kept having all the symptoms..... finally after being sick for about 9 months, my pcp told me of the bowen test that was told to him by another patient of his and she tested positive  at 32.  She got antibiotics and was fine. 

He advised me that the test wasnt cdc approved, but it would be intresting to see what the results would show.  And I came back at 128.....  He wasnt sure what to make of it except to put me on doxy for 3 months which helped, but did not solve the problem.  I decided to find an llmd and showed him the bowen... he ran his own tests including wb and band 23 is always active.  He said that band is the only band thats specific for Bb and he diagnosed me on both the wb and bowen. 

There are alot of disputes about the bowen test,,,, like everyone always tests postive...blah blah blah....  All I knew was that what ever postive test I got back would be really positive, as that would explaine the explosiveness of my symptoms.... 

I was lucky, I had a great pcp, who knew me well before I got sick, and was willing to look outside the box when it came to the testing.  Its interesting you had a 128 also....  Did you have any other tests??

Posted 3/11/2009 11:59 PM (GMT 0)
i work for social security as a vocational expert....you will more likely than not have one at your hearing.  i testify as to the person's ability to work in ANY job based on what the physician says are the patient's limitations.  for example, is the person's concentration mildly, moderately or extremely impaired?  if the doctor checks extremely, you will be approved unless there are other credible physicians on the record debating this. some judges are sympathetic and will try very hard to grant benefits. other judges are so hard to persuade that you could have f lee bailey as your attorney and it would matter not.  bottom line, so MUCH depends on the judge.  if you are turned down, file an immediate appeal.   some have to have 2 or 3 hearings before they are finally approved;some are approved on the first hearing.  also, i see lyme patients who are approved more often than denied.  have you considered getting the free cd57 test at labcorp?  your attorney can enter a symptom list from ILADS as an exhibit.  print one out and give it to him.  lawyers are less likely to know the full ramifications of lyme disease than physicians. good luck

Posted 3/12/2009 2:20 AM (GMT 0)
That is why I was asking about the Bowen. Mine was 128 but all others by Igenex were IND.(I had three + bands). Fry  Lab said I had Bart , Erch. but Igenex was neg. And round and round I went. (: Still dont know... But the Bowen was done back in 2005 and here it is 2009 and I am still getting the run-around. So, thats why I asked if your doctor diagnosed Lyme with the Bowen results. The docs here claim its not an acceptable test. Frustrating isnt it?  Good luck at your hearing, I hear thats not a party either.  (: D

Posted 3/12/2009 2:27 AM (GMT 0)
I just wanted to add I was always told it was Band 41 not 23 that was indicative of Lyme. So many different opinions about all of this!! Did a LLMD tell you 23 was significant? Were you positive on 41 or just 23? My 23 was ok.  D

Posted 3/12/2009 2:45 PM (GMT 0)

if you want to understand the bands, read this....

http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt

Posted 3/12/2009 8:24 PM (GMT 0)
Thank you

dcordes!!!!!!   I appreciate your imput and help........ :)

Posted 3/12/2009 8:28 PM (GMT 0)

I was positive on band 23 only..................  and my llmd said that it was clearly Lyme disease....  I get so frustrated..... It is, it isnt, it is, it isnt..  I know Im pretty sick........  I find it hard to believe with all the symptoms that we get, tests wouldnt show positive.........I understand the rational for it, but making the diagnosis shouldnt be this hard... I check on Central Florida Research, and they are still administering the test...

What are you doing to take care of yourself?  

Posted 3/13/2009 1:21 AM (GMT 0)
i am curious if you were tested at igenex.  i ask because my original Quest lyme test was positive only at 23 kDa (OSPc) ...I was told I did not have lyme.  I was so sick.  Like everyone else, I saw many docs and specialists but it was a CNPR who told me I had lyme disease and sent my blood to igenex.  on that test, 31Kda (OSPa) had 3 or 4 stars (you know the regular lyme tests do not count this band, depite this protein being used to make the lyme vaccine).  if they did, my igm would have been positive (two bands on the igm). i have had 3 CD57 tests and NEVER got above 20.  The test is covered by insurance.  While a test with a score in the 60-300 normal range does not rule out lyme infection, i would use my low score test results to "prove" my chronic lyme infection if i was filing a claim for ssdi.

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