LymeNet Flash: Western Blot is on its way to the lab!!

This is topic Western Blot is on its way to the lab!! in forum Medical Questions at LymeNet Flash.

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Posted by threefries (Member # 6959) on :

My dad (kinda into med stuff) ordered all of my health records to be sent to us. I was told that both lyme (ELISA) tests came back negative. However, I was told by the doctor later that the first one was equivocal. Come to find out from the records, so did my second one. Why don't they tell people this important information???

I talked to my parents some more and got them to understand a little more about lyme. Though, I'm pretty sure they were only inclined to let me get the Western Blot to "prove" to me that I don't have it.

So, I skipped the duck and called an advice nurse yesterday. She wrote out the lab work, and I had the blood drawn for the Western Blot today. *crosses fingers*

Oh, and the best part was that I got my first "stupidest thing a duck ever said" (only it was from the advice nurse)

I said, "I think I need to have a Western Blot done as both of my lyme titers have come back equivocal and this is what the cdc recommends"

She says, "A Western Blot?? Honey, that tests for HIV. Do you have HIV?"

Then she goes and talks to the head of the lab and says, "you taught me something. I'm ordering it right now."

I couldn't help but laugh. There may be a Western blot for HIV, but we were talking about lyme!

Be praying for my results. Thanks!

Posted by bg (Member # 46416) on :

Great, but you forgot to mention a critical part of this test. Which lab was it sent to: Igenex, MD Labs, or one that does NOT test for ALL strains.

I hope you had them write FAX results to dr. and snail mail paper copy. Don't want others to go thru my lost paperwork of 4 plus weeks!

Yes, WB is used for HIV too; I learned this just as you did and by reading more info later.

Glad you educated her. Best wishes on your testing.

Betty G.

Posted by Lymetoo (Member # 743) on :

Now, just so you'll know. It's best to have lab techs who are used to doing WB's run them. They have to handle the blood properly before sending it off to the lab.

Also, my LLMD only runs WB's in the early part of the week so the blood doesn't sit at the post office all weekend.

Hopefully, your test will come out + anyway! I sure hope so, so your parents will be behind you 100%.

About that equivocal test. I know someone whose ELISA was positive and the dr told her it was negative.

She didn't find out until she had her records sent to her LLMD.

If you haven't read this, now's the time!

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

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oops!
Lymetutu

Posted by James H (Member # 6380) on :

Great! We hope the lab they sent it to does a good job.

Be sure to thank your father for his support!

Being one myself, I can assure you that a father is his daughter's best friend in a situation like this... having to deal with a medical establishment that would just as soon wiggle out of their responsibility!

We act tough, but hugs from our daughters make us melt, and we will do just about anything to protect them.

Asking for your records by the way was a good move. Be sure to get a copy of the Western Blot results also when it comes in, even if they say it is 'negative'. (Read Lymetoo's link carefully and you will know why.)

As I have said before... the equivocal reading on the Elisa is about the same thing as being 'just a little bit pregnant', as far as Lyme is concerned.

We hope it goes well and you get help to get feeling better!

[This message has been edited by James H (edited 25 March 2005).]

Posted by DJP (Member # 5893) on :

I'm praying for a positive for you!!! Isn't it terrible that we all pray for a positive test result?

Remember that it could come back negative, but you could still have Lyme and maybe start thinking about what to tell your father if it does come back negative.

I don't have the time right now, but I will try to find some links that explain why it can be negative for you.

Read that link that lymetoo sent you because I think it tells you there that it is significant even if you test positive on 1 lyme specific band.

Good luck and pray!!!!

Posted by bg (Member # 46416) on :

Tutu, thanks so much for the link .. great info, and I hope I can get Marnie to edit her LONG site link into 2 lines so I can print it off.

Can't read it now since it requires scrolling left/right.

Betty G.

Posted by Lymetoo (Member # 743) on :

Good deal, Betty. That would help!

threefries...hope you won't need this info, but decided to post it for others since it was mentioned.

REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochetes are deep in host tissue
5. Only blebs in body fluid; no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (300 strains in U.S.)
8. Antigenic variability
9. Surface antigens change with temperature
10.Utilization of host protease instead of microbial protease
11.Spirochete in dormancy phase
12.Recent antibiotic treatment
13.Recent anti-inflammatory treatment
14.Concomitant infection with babesia may cause immunosuppression
15.Other causes of immunosuppression
16.Lab with poor technical capability for Lyme disease
17.Lab tests not standardized for late stage disease
18.Lab tests labeled "for investigational use only"
19.CDC criteria is epidemiological, not a diagnostic criteria

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oops!
Lymetutu

Posted by threefries (Member # 6959) on :

oh darn it all! I always forget something.

I didn't think to ask what lab they were sending it to. And with "Kaiser" it's probably not a good one. Crap.

Thanks for all of your support - I'll be sure to let you know the results as soon as I get them back.

I really hope that I get this figured out soon.