Just got tested for Lyme (Mom did!)

[matis_mom]

I went back to the doctor today because last week I had a red throat and swollen tonsils, but the rapid was negative. This week it looks redder, although I don't have any pain. But, my shoulder started hurting like crazy yesterday for no apparent reason. So the doctor did a culture and started me on Biaxin (Augmentin did not work last time), and also tested me for Lyme (just regular lab). So I hope and pray if I do have it, it will come up NOW and I won't have to go back and forth and spend even more time driving to appointments.

I have a 10 day prescription for Biaxin, and then the plan is to switch to doxycicline (or whatever it's called) if it comes back positive.

I have to say even though I feel OK, I felt a lot better while I was on antibiotics last month for strep. We'll see...

Edited September 10, 2010 by mati's mom

[JTs-Mom]

Was it your doc's idea to test for Lyme or did you suggest it? Just curious since most docs wouldn't think of Lyme right off the bat. You need to have a pretty strong antibody reaction to show up positive on a standard lab test. Hope you start feeling better soon!

[philamom]

I would like to be tested but don't want to run the Igenex at this time. Could someone tell me the name of the standard test (Cd?) that is done through Lab Corp, I think? Is it covered by most insurance?

[KeithandElizabeth]

Melinda:

 

I am not sure about the standard lyme test that is covered by insurance... maybe lyme mom or Pacificmama will chime in here. I just want to suggest having the CD 57 (killer cells) test run as well since this test should be covered by insurance and a number below 100 is often indicative of lyme.

 

Elizabeth

[philamom]

Melinda:

 

I am not sure about the standard lyme test that is covered by insurance... maybe lyme mom or Pacificmama will chime in here. I just want to suggest having the CD 57 (killer cells) test run as well since this test should be covered by insurance and a number below 100 is often indicative of lyme.

 

Elizabeth

Yes, that's the test I was referring to...thanks.

[justinekno]

But from what I have read and experienced personally, not all dr's (even LLMD's) agree with the CD57 being used a Lyme test. My CD57 was 22 but a couple of dr's I have seen say that the body has so few natural killer cells anyway, it's not surprising that at times, only a few would show up on a slide. I don't really know enough to argue either way.

 

Melinda:

 

I am not sure about the standard lyme test that is covered by insurance... maybe lyme mom or Pacificmama will chime in here. I just want to suggest having the CD 57 (killer cells) test run as well since this test should be covered by insurance and a number below 100 is often indicative of lyme.

 

Elizabeth

[NewBeginnings]

I have run into this as well with Dr's. My first CD57 test was a 44 and I didn't feel that bad. My second was at 67 and I felt horrible. (My 1st test was CDC positive though LabCorp and 7 months later showing more bands through Igenex) I also know of someone who has a CD57 number of 16 and he feels just fine and a friend that has Lyme that tested in the 100's and she is very sick and has a CDC positive Western Blot through LabCorp.

 

Some Dr's firmly believe in it but I also know of others that completely don't agree with it or use it for diagnosis. All of these Dr's are LLMD's.

 

As it seems like everything with Lyme, it's hard to know what to think!

 

 

 

 

 

 

 

 

But from what I have read and experienced personally, not all dr's (even LLMD's) agree with the CD57 being used a Lyme test. My CD57 was 22 but a couple of dr's I have seen say that the body has so few natural killer cells anyway, it's not surprising that at times, only a few would show up on a slide. I don't really know enough to argue either way.

 

Melinda:

 

I am not sure about the standard lyme test that is covered by insurance... maybe lyme mom or Pacificmama will chime in here. I just want to suggest having the CD 57 (killer cells) test run as well since this test should be covered by insurance and a number below 100 is often indicative of lyme.

 

Elizabeth

[KeithandElizabeth]

Justine:

 

You are right about the CD 57 test in terms of it being a controversial test for lyme disease. No one in our family has ever done the test so I cannot speak from experience, but I know that lyme mom does do the test for herself so maybe she can give her thoughts on it. I do read about it quite a bit on the lymenet forum though and many of these people refer to having a number above 100 as one of the means to knowing whether they have beat the lyme. I know that SF Mom's friend sees the doctor who developed the test so maybe she can also add to these post.

 

Again, I am not an expert about this.

 

elizabeth

[matis_mom]

Was it your doc's idea to test for Lyme or did you suggest it? Just curious since most docs wouldn't think of Lyme right off the bat. You need to have a pretty strong antibody reaction to show up positive on a standard lab test. Hope you start feeling better soon!

My doctor brought it up. There is A LOT of Lyme where we live (a rural area in VA).

I just got a call today that both the Lyme and the culture where negative, but the nurse said to come back if I don't feel better, so I'm thinking the doctor is open minded and knows a negative is not always negative.

The shoulder pain is gone, but know I don't know if it's from the abxs or maybe I just pulled it without realizing. The doctor did say sometimes strep can cause joing pain (a regular doc who might be open to RF???)

I will go back anyway because I don't want to take any chances and ds is supposed to have pex at the end of the month.

Right now I don't have the time or the $ to look into Lyme for myself, since I don't have any debilitating symptoms (although in the last couple of years I had depression, mood swings, been diagnosed with Thyroid nodules (benign), and we keep getting strep).

If I can find a good Lyme doc who takes insurance I will pursue it further.