Our LLMMD will not order the test because he says they are not accurate. We think we should have one to see-if there is a low number we know for sure to keep up with treatment. Since we also have the ALS dx, and my husband is getting weaker..we need something to tell us what to do. Does this make sense?
Posted by Lymetoo (Member # 743) on :
He's right, but if you really wanted the test it would seem that he would honor that request.
Posted by geo (Member # 18333) on :
My LLMD also will not order them due to inaccuracy plus he says they do not measure how the coinfections are responding.
Posted by Beagle (Member # 29698) on :
If it makes you feel any better, My CD57
Posted by Beagle (Member # 29698) on :
....was normal. Yet I've had very high sed rate, high cpk, high cpr, brain mri had spots and pointed to lyme. And have been too sick to leave the house for so long! so, i think cd57 must not be a huge deal?
diagnosed Lyme & Bart
Posted by Lymetoo (Member # 743) on :
--But if it was LOW then they would feel better about being on the right track.
Posted by penguingirl (Member # 28688) on :
Yes - mine was 16 in Oct and now is 28.
My LLMD said there is a 30% swing either way so we can't really rely on it completely but it was just to get an overall idea.
Posted by sad1 (Member # 26837) on :
thanks all. we've been taking iv rocephin for 3months, flagyl for 6mths and switching to vancomysin iv next week. so we are just looking for something to say..hey, your on the right path. or , stop it dummy, your making the ALS worse-forget about lyme. Maybe its too late?
ALS confuses the issue and I just want him to have good quality of life. Don't want to waste any of it.
Posted by MichaelTampa (Member # 24868) on :
If you really want the CD57, directlabs.com will give you a script to take to LabCorp. You pay directlabs.com and they pay LabCorp. $132 and insurance would likely not cover it because it's ordered this way, but if you really want it, know that it is possible.
The CD57 has tracked my illness and almost-recovery very nicely, so it is useful for some.
Posted by lou (Member # 81) on :
I also have the ALS/Lyme presentation and, as I have posted a number of times before, find that low dose pulsed IV at least keeps the symptoms down. Higher levels make the ALS progress faster, due to the inflammation from herxing.
Personally, I would go by symptoms, not by a test that might not track the progression. If he is getting weaker, what would a CD57 tell you that would help?
Guess I am lacking in faith about testing anymore. Just runs up the bills.
Posted by gmb (Member # 23562) on :
I just had a CD57 test from LabCorp, and if my insurance doesn't cover it they will hit my credit card for $75.
gmb
Posted by sandim (Member # 30251) on :
I do think there is some validity to natural killer cell testing. When mine was only a 3, I was very sick. Now its a 7 and I'm no longer getting constant sore throats.
Posted by Lymeorsomething (Member # 16359) on :
I agree with Michael Tampa. I feel the CD-57 is accurate where lyme is a main player. Mine has been consistent 30-40...
I've used Direct Labs for a long time. They must have added the CD-57 recently. That's good news too.
Posted by AnnaOD20 (Member # 29942) on :
Personally I like having the CD57 scores as a way to track progress. My first time having it tested it was a 48 and the next month it was a 60. Just had it tested last week again after a full month or so of treatment and hoping for another jump when I get the results next week. I know it may plateau for awhile, but seeing the jump from 48 to 60 gave me such a boost and made me feel my efforts are worthwhile. I believe we will be doing this test monthly while I am being treated. Should know more at my next appt next week. Good luck.