Still confused about lyme testing

[Melissa072]

Hi again
I don't want to prattle on but I'm finding it hard to understand the lyme testing, as I keep getting told different things.
I have ms symptons, and after mri and L.P were clear, I wanted to get tested for lyme.
I eventually found a G.P. who would get my bloods tested here in Australia via the cd57 test, my results come back at 39, he said I have lyme and not ms.
My neuro says I must have ms as I have been tested for everything else, and to just get 6 monthly mri's taken until something shows so I can get a diagnosis.
My 10 year old daughter, about 6 months after my "attack" had optic neuritis symptons, as well as tingling and incontinence.
The G.P. now wants us to get tested through iginex I think they are called.
Does anyone know how accurate the cd57 test is, if my number was a 39 does that mean I do have lyme, or could the test be out at all??????
They say the australian cd57 testing is not very reliable.
Thanks
Melissa

[wonko]

Medical opinions on the topic are polarized, but the bottom line is that NONE of the available testing for Lyme is sufficient to rule Lyme in or out with certainty.

There are many reasons for this.  One has to do with the many co-infections that can accompany Lyme but not show up on Lyme tests.  Another is because the people who are most sick from Lyme have very strained immune systems that no longer produce enough Lyme antibodies to show up positive on the tests.  Another is because there are many strains of Lyme, and it is not possible to test for them all.  Another is because medical professionals can not decide on the proper criteria for a bona fide positive result; the current standards in place by the IDSA were developing for *monitoring* Lyme in known cases, not for diagnosing it, and are therefore too stringent for screening.

CD57 is not a direct test for Lyme.  While my understanding of the test is limited, it is related to measuring immune suppression.  People with AIDS may have low CD57, and *some* Lyme doctors find that *some* of their patients have low CD57 that increases with treatment.  Again, CD57 is *not* a direct test for Lyme disease.

Bottom line is that Lyme is a clinical diagnosis (unless you catch it early and have a bull's eye rash).  That is why it is extremely important to find a doctor who will be able to assess your entire medical situation (history, all tests results, symptoms).  While many Lyme doctors order specialized testing for Lyme and co-infections, this is done to guide the diagnosis and treatment, but is only one "piece of the puzzle," so to speak.

If you have not done so, you may want to read Pam Weintraub's book "Cure Uknown" (depressing title, but a great read).  It combines personal experience, history, and scientific facts about Lyme and can help sort out many of the questions you may be facing.  

I'm very sorry to hear about your daughter, but I can see why you are suspicious of an infectious process since you are both affected around the same time...I hope you find answers and solutions soon and don't worry about prattling on, being sick without answers is emotionally and physically a huge strain and you're doing the right thing by questioning and sticking up for yourself.

[carrie235]

Hi Melissa:

I've read you story about you and your daughter before and it does seem very strange that you both have these weird symptoms.  I thinking getting tested through IgeneX would be very smart for both of you.  And Kudo's to your doctor for wanting to do that.

Wonkos post was very good.  My CD57 levels are at 100 but I have tested postive through IgeneX for Lyme with one co-infection....

Keep us updated and hope you get answers soon!

Carrie

[vicshama]

Hello I have cronic Ld i have had it for three years if u look at my post u may find some help. i dont know how long u have been sick but igenex i hear is the best place to do a western blot test for lyme please if u have had this for a long time getting treatment is very important, and i have found out that the pcr testing of blood is not accurate unless they do byopsy of the skin for Lyme, its very tricky and hides everywhere other than in the blood stream good luck