posted
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?
Posts: 23 | From Pennsylvania | Registered: Jul 2010
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posted
My LLMD also will not order them due to inaccuracy plus he says they do not measure how the coinfections are responding.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
....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
Posts: 348 | From MA | Registered: Dec 2010
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posted
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.
Posts: 23 | From Pennsylvania | Registered: Jul 2010
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
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.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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gmb
Unregistered
posted
I just had a CD57 test from LabCorp, and if my insurance doesn't cover it they will hit my credit card for $75.
posted
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.
Posts: 144 | From Pennsylvania | Registered: Jan 2011
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
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.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
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.
Posts: 376 | From New York | Registered: Jan 2011
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