I have been looking for an explanation about why I am negative now on my Western Blot.
Diagnosed in February, have taken Doxy for 28 days and a few doses of Biaxin.
Just had another Western Blot. Negative both IgM and IgG. I am having the results sent to me so I am not sure what exactly they "look like"
I would appreciate any feedback and maybe some references for anyone who might say I am cured. I would hope this would be positive but I don't know?
Thanks!
Posted by Lymetoo (Member # 743) on :
Which lab?? And why did you test again so early? Could raise problems with your insurance.
Posted by nu2lyme (Member # 14849) on :
Saw the ID doc ( who was a complete idiot!) He wanted to order another test just to see what was going on.
My original test was from my family doc. She referred me to the ID doc.
He said that my positive Western Blot was a false positive and that I don't have Lyme at all.
I was thinking the same thing, after it was all said and done. Now my insurance company has a leg to stand on saying I am " cured"
I am sooooo mad at the medical community right now I could scream!!!!
Posted by Lymetoo (Member # 743) on :
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Posted by Lymetoo (Member # 743) on :
He probably used some crappy lab like Quest. He was sure you'd come up negative and he was right.
Have you been tested thru Igenex?
I'm sorry you had to learn the hard way about ID DUCKS.
Do get a copy of his test. He could be lying to you... and it may show some positive bands which indicate Lyme.
Posted by Lymetoo (Member # 743) on :
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Posted by sparkle7 (Member # 10397) on :
Welcome to "The Lyme Matrix". Now, you have to choose either the blue pill or the red pill...
The tests are inaccurate. You need to get a clinical diagnosis. Find a doctor who knows how to deal with Lyme & is not a crook or nutjob.
I don't have insurance - so, it's not a big issue to me. In some ways I think I'm better off without it. I think over the 7 or so years that I haven't had health insurance - I've actually saved money. I calculated my costs & health insurance would have been more expensive that what I spent... & I spent alot.
Posted by daise (Member # 13622) on :
Hi nu2lyme,
I'm sorry, but looks like you've been duped. That's a common type of thing for us.
Infectious disease doctors (but for a tiny handful) hate Lyme patients. They really do. Was your blood draw even sent to IgeneX? (LabCorp is not for western blots.) If not, that is an infectious disease doctor, for ya. They knew it wouldn't show.
It was not right to order another one so soon. Did you actually first have a positive western blot, ordered by your family doc?
Only about 40% test positive with an IgeneX western blot.
Perhaps ask your family doc for a CD57 count from LabCorp Lab in Dallas, TX. That's a screener for Lyme disease, but only if you have had Lyme signs and symptoms for atleast a year, probably more.
It's a test of how worn down your immune system is and is specific to Lyme. A positive could save you as far as getting insurance to pay. Insurance companies like blood tests.
Yet, that conflicts with the fact that Lyme remains a clinical diagnosis.
_____________
You wrote: "I am sooooo mad at the medical community right now I could scream!!!!" _____________
Yes ... I hear you. Many here know exactly what you mean.
Or perhaps you could pay out-of-pocket for a Fry Lab test. There are some who say it's better than a western blot from IgeneX. I don't know if that's true or not.
You could do that with a CD57 count, for that matter.
Search google under Fry Lab to get a kit. Also, I don't know if LabCorp Lab is on the internet, however, you might google them, too, and find out what you need to get their CD57 count test.
If you are paying for it, don't tell any docs or your insurance that you are getting tested. That way if it turns up negative, your insurance company won't know.
I've found that for a Lymie strategy is everything.
There are lots of things you can show your family doc or the insurance company. For example, go to www.ilads.org. On the left menu click "Treatment Guidelines" and that will take you to Dr. Burrascano's 33 pages of tips for 2005. Print out all of it.
Print out the letterhead for ILADS, to make an impression. Others here could help with anything specific the insurance company has to have. Then they pay or not.
If not, all is not lost. Does your state have an outside appeals process with your states Insurance board?
Try to "show up" the damage done by the infectious disease duck.
Perhaps get a nurse case manager (care coordinator--see your booklets) with your insurance company. They're on your side. Ask for one who has dealt with chronic Lyme patients and ask how they helped others (positive thinking.)
Try to rest well tonight and fight the good fight to help yourself, tomorrow. Hmmmm ... it's 9:30 here in mountain time.
Tomorrow is another day.
Scarlett O'Hara Posted by daise (Member # 13622) on :
Oh yes, you need an LLMD (Lyme-literate MD) who is also an ILADS doctor. See this site for the forum threads on finding an LLMD and post there. (Start at Forum Home.)
Also, see the top of this page, "Support Groups." Click it and then your state. You can ask someone locally for an LLMD's name.
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