posted
So...I had been posting positive news. My CD57 had consistently went up each month while on abx. Started at a 48 then a 60 then 80, 88 and 99. I was feeling good and stopped meds and just found out today that after about a month or so w/out abx my CD 57 is back in the 60's.
I was really tired the day I went in (my son got me up a lot the night before). Can things like that throw off a number or is this a clear sign that I am really not ready to be off abx?
My mercury level is way down and overall I am feeling good, but so discouraged by this number. I know that the CD57 is not very reliable but mine consistently went up each month so I had hoped that w/out abx it would still continue to increase because I thought my immune system was taking over.
Any thoughts??
Posts: 376 | From New York | Registered: Jan 2011
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I'm sorry to hear you are struggling again. OUr IALDS doctor would like us symptom free for 3 months and a CD-57 of 150 ideally.
Was it your decision to stop meds?
How long since no Lyme symptoms?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
Thanks. My LLNP thought it was time to stop meds. I am a strange case because even when my CD57 was at the lowest I wasn't symptomatic.
I was feeling really good the last month and a half. I remember thought I was very tired the day of the test (my 2 year old was up a lot the night before) and even wondered if that could impact the score. Probably not but who knows.
I am going to ask her about going back on abx. I feel like in my case I can't trust that my symptoms match what is going on w/ my immune system. I do have energy, feel healthy, but clearly something must be going on. Ugh!!!
Posts: 376 | From New York | Registered: Jan 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/