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TEST RESULTs!! Help!!

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Posted 11/1/2016 6:21 PM (GMT -5)
I've been so ill for 2.5 years. Been to two rheumatologist, and multiple other doctors, who all did the "normal" autoimmune tests on me (mostly because of my joint pain), all came back negative, except for one positive ANA, through a sensitive lab in CA.

Recently, an internal doctor I found finally listed to me and ran Lyme, Ebstein Bar, and Parvo. All three of them had one thing positive or another. But specifically the Lyme looks like this:

LYME DISEASE AB(IGM),BLOT Positive
23 KD (IGM) BAND Positive
41 KD (IGM) BAND Reactive
All other bands were negative/non-reactive

My doctor is in the hospital himself, and won't be back in the office until Monday and there is literally no one else to see me. Everything I've read says that this is a positive for Lyme. However, I had a nurse practitioner friend, tell me she thinks it's a false positive. I'm soooo confused. Please give me any input you can.

Thank you!
Posted 11/1/2016 6:53 PM (GMT -5)
Hi nikinicole , welcome to our community!

Sorry you've been sick for 2 1/2 years..going from Dr. to Dr.
Unfortunately, that is the story for many of us who have Lyme disease.

According to Dr. Horowtize (well-known LLMD) - band 23 is specific to lyme disease.

i would be seeing out a LLMD and scheduling an appointment.

Nope, not a false positive....

We can help you find a LLMD - just start a new thread titled: "Looking for LLMD in/near______" and fill in the blank with the nearest larger city.

Also, you can go through the ILADS Physician Referral:

ilads.org/ilads_media/physician-referral/


Because you are new here, we suggest you look through the "New to Lyme?..Start Here!" thread that sits at the top of the page.
Posted 11/1/2016 8:32 PM (GMT -5)
Hi Nikinicole,

I just wanted to stop by and welcome you to the forum. I am sorry that you have had to go through all of that. It is really difficult to have no idea what is wrong with you. Now that you know I hope you can find a LLMD and get to healing. There are many methods of healing and it is truly an individual choice. There are many here that can help with that as well as your LLMD (Lyme literate MD).

Blessings for healing for you!
Posted 11/1/2016 8:50 PM (GMT -5)

Girlie said...
Hi nikinicole , welcome to our community!

Sorry you've been sick for 2 1/2 years..going from Dr. to Dr.
Unfortunately, that is the story for many of us who have Lyme disease.

According to Dr. Horowtize (well-known LLMD) - band 23 is specific to lyme disease.

i would be seeing out a LLMD and scheduling an appointment.

Nope, not a false positive....

We can help you find a LLMD - just start a new thread titled: "Looking for LLMD in/near______" and fill in the blank with the nearest larger city.

Also, you can go through the ILADS Physician Referral:

ilads.org/ilads_media/physician-referral/


Because you are new here, we suggest you look through the "New to Lyme?..Start Here!" thread that sits at the top of the page.

Don't forget you need to activate your email in your profile nikinicole, we try to protect our LLMD's by not posting their names publicly, to avoid someone seeing names they can turn in to IDSA for questioning, which may end up in them loosing their license to practice. CDC is very strict about following IDSA's outdated, insufficient treatment guidelines.
Posted 11/1/2016 8:59 PM (GMT -5)
Got it, am getting the info for you now.
Posted 11/2/2016 2:55 PM (GMT -5)
Welcome nikinicole, I'm so sorry you're going through this. I had similar test results and because I was not CDC positive, my internist didn't think I had Lyme. But because I continued doing research and found this group I was able to find a LLMD. I've been in treatment for a year and have seen some progress although I continue to keep up with my research.

I just thought this article may be helpful for people who have not yet been diagnosed as having lyme but actually do have it.

http://www.tiredoflyme.com/4-reasons-a-lyme-test-will-come-back-negative-even-if-a-person-truly-has-lyme-disease.html

Best of luck to you.
Posted 11/2/2016 6:27 PM (GMT -5)
Yes do not accept the false positive explanation. It is wise to find someone to treat you for Lyme's because band 23 is specific to Borrelia nothing else has been shown to turn that band positive.

And yes that is many of our stories. For me it was 14 MD's and 20 different office visits with all normal tests. Many others will share the same as well.

Nick
Posted 11/2/2016 6:40 PM (GMT -5)
I would get both a VCS test and a Human Lymphocyte Antigen test before relying solely on a doctor treating based on symptoms alone.
Posted 11/3/2016 10:10 AM (GMT -5)

Navigator said...
I would get both a VCS test and a Human Lymphocyte Antigen test before relying solely on a doctor treating based on symptoms alone.

navigator, what are these tests that you mentioned? And what are they for?
Posted 11/3/2016 10:12 AM (GMT -5)
My doctor is t treating based on symptoms, my test results are above. But I go to see him this Saturday so we'all see what he says.

Thank you everyone
Posted 11/3/2016 10:13 AM (GMT -5)

nberg said...

Navigator said...
I would get both a VCS test and a Human Lymphocyte Antigen test before relying solely on a doctor treating based on symptoms alone.

navigator, what are these tests that you mentioned? And what are they for?

Here is the link for the VCS test.


/www.vcstest.com/
Posted 11/3/2016 12:14 PM (GMT -5)

Navigator said...
I would get both a VCS test and a Human Lymphocyte Antigen test before relying solely on a doctor treating based on symptoms alone.

Her test results show lyme - band 23 and band 41 = positive
Posted 11/3/2016 7:21 PM (GMT -5)
To echo Girlie, if you have a lyme specific band(s) then you have the lyme bacteria in your body. This whole "you need a combination of 5-6 bands" that the main stream medical community uses, is illogical.

It suggest you have to have 5-6 different pieces of empircal evidence of something existing to know it exist. We wouldn't use that logic in any other part of life
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