timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi all! I've decided to post all my western blot results here...so those learning about lyme disease can see how they can vary from lab to lab as well as from date to date.
Lyme disease is a difficult diagnosis. That is why it is so important to rule out all other possible causes of someone's illness.
That is why it is also important to get a doctor who KNOWS how to test for and interpret lyme tests.
I ended up at Columbia University Medical Center, for the doctors in my state had no idea what was wrong with me. At that time I was diagnosed with "probable" lyme disease based on my history, the fact that everything else under the sun had been ruled out in me, and that my lab tests were "suspicious" but not CDC diagnostic for lyme disease. (I also had a brain spect indicative of lyme).
Today I got word of my first official CDC positive WB. It took 12 WBs to get a positive.
There is no doubt in my mind that I have lyme disease, based on my symptoms, response to treatment and herx reactions.
I hope this helps some of you who wonder about their western blot results. I would highly recommend getting tested at more than one lab. All the labs shown below are good labs.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Bettyg~
Yes, those were all IND (indeterminate) bands.
Other bands (like from Stonybrook) are the positive bands.
I did not list any negative bands.
I find it amazing how the results vary from lab to lab. I did not elect to send blood to MDL with the last draw (it was sent to Igenex and Stonybrook only)...for I've not ever had one positive band from MDL. Now, I kinda wish I had.
Surprisingly, my husband has many significant bands from MDL lab, including a strong positive on band 39. (However, he is not CDC positive)
It is so important that a doctor who understands western blots reads the results. I know when I saw Dr. F at Columbia he was chuckling at my Western Blot. I asked him what was so funny. He said "You have 4 of the 5 bands that the CDC requires for diagnosis. Most people get 2 or 3. The fact that you have 4 is significant." Those comments went in to his written report on me.
Yet, most doctors wouldn't know that or undertand that. Hence, I would not have been treated by lab tests alone, for I was never "positive."
Thank God I wound up with a doctor that understood looking at the clinical history first, and using lab data as supportive only...AND knew HOW to look at the lab data.
I will be asking my LLMD about my recent IgG (just one positive band on 41) vs the IgM which is flaming positive by CDC and NYS criteria. I laughed when I saw the difference between those tests, and I wonder what he will say about it.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Wow, that's amazing Timaca!
Thanks for putting this all together for us.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
T:
How are you feeling now..? And have you been off (or on) abx just prior to your 2007 test?
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
bpeck~ I am not well. You can read more about my experience under the thread "My hyperbaric oxygen therapy experience" on page 2 of this forum. I have pretty much every lyme symptom possible, affecting every body organ/system except my nose!
I am on IM bicillin, HBOT, and just starting slowly back into minocycline, hoping and praying I don't see C. difficile again!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
My first western blot had four of the five IgG bands required to be CDC positive. So, my case was not reportable. What a stupid system. And most docs would call this negative and wouldn't treat it.
My next western blot was positive for band 41 only. Different lab.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
t, thanks for replying to me. i'll study this more tonight when i have more time! thanks for taking the time to put it all together, and educate us ALL!
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Cave~ I also did a urine antigen test in April or May of 2005 that was negative.
I had a brain spect in March of 2005 that showed moderate, global hypoperfusion consistent with lyme.
bpeck~ To clarify how I feel. Even though I have lots of symptoms and don't feel well, I'm a heck of a lot better than I used to be. I used to not be able to function...one errand a day was too much at times. Now, I can do many errands in a day, and often with enthusiasm. My brain fog is considerably less as is my fatigue.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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![[confused]](graemlins/confused.gif)
all IND: 39, 45, 58, & 66 ??![[Wink]](wink.gif)
![[Big Grin]](biggrin.gif)
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