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georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 3:15 PM (GMT -6)   
 
Hi,
 
I'm new.  I just wondered if anyone else has been diagnosed through the CD57 test.  I've been on antibiotics for 13 months now.  My count was originally 12, then 32, then 53, then 48, then 60, and now it's back down to 36.  I don't know what to do now.  Any thoughts?

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/10/2009 4:30 PM (GMT -6)   
Welcome-

Are you being treated for coinfections? I believe they can mess with your cd-57 test.

I also believe tho that it takes a long time to build your immune system up after it's been whacked so hard from this illness. Are you doing anything to boost the immune sys?

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 5:27 PM (GMT -6)   

 

I have not been tested for co-infections.  I took a leave from work in August and September.  Along with the Tindamax and the Cat's Claw, I also had Ultraviolet Blood Irradiation, ION foot baths, IVs with Hydrogen Peroxide and Magnesium, Hyperbaeric Oxygen treatments, Sauna, accupuncture, neurolink, Matrix on a daily basis.  I also took a whole bunch of supplements.  So, yes, I have done a lot to build myself up.  My count was 60 when I went back to work.


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/10/2009 5:37 PM (GMT -6)   
My guess is coinfection then. Emphasis on guess.

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 5:46 PM (GMT -6)   

 

Have you had co infections?


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/10/2009 6:12 PM (GMT -6)   
Hello. I was diagnosed by a CD57 score. I had tested neg. on all other tests. This is the only tangible evidence that I have. I scored a 28.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/10/2009 6:24 PM (GMT -6)   
First- my cd-57 was 13 after being treated 1 1/2 years for lyme. 13 of those months on IV abx.

I can't get a test pos. for bart but have a lot of those symptoms. I am doing much better on my drug combo of mino, biaxin, and plaquenil.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/10/2009 6:31 PM (GMT -6)   
Georgialyme: What did you think of the UV blood irradiation, I had posted about that once here. Did you notice improvement with that treatment and how many did you do? Thanks  D

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 6:37 PM (GMT -6)   
Stutterbug:  28 is low.  Are you better?

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 6:40 PM (GMT -6)   

Seeingstars:  13 after a year and a half of treatment?  That's awful!  I'm going to suggest that combination of drugs to my doctor.  I've been on plaquenil the whole time because I've been diagnosed with Lupus since 2001.  Have you been tested since you've been on this combination?


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/10/2009 6:43 PM (GMT -6)   
I am not better. But I just began treatment again recently. Last year I was treated for a short time. I found a doc. in Georgia and I am starting doxy, slowly. I was having trouble with my liver, from another med, and she is starting me out very slow and we will build up. I have had LD for 28 years but was just diagnosed over a year ago. I hope to get IV treatment when My new insurance kicks in.

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/10/2009 6:45 PM (GMT -6)   
GEORGIALYME: Do you have a doctor? Where do you live? I live in Douglasville. I just moved here in May.

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 6:46 PM (GMT -6)   
Dowa:  I felt that the UVBs really helped.  At first, my blood was very dark.  At the end, some days, it was a nice, bright red.  I had approximately 20 treatments.  I really think they helped more than anything.  But, it's a big needle and I have terrible scar tissue in my veins now.  That was when my CD57 count was up to 60.  I did stop getting what I called "spells".  Some days, I just cried all day and felt like I had no coping skills.  I always wanted to put pressure or cold on my neck and forehead.  I have not had one since the end of September, but with my numbers so low, I'm so afraid of getting worse again.

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 6:50 PM (GMT -6)   

Stutterbug:

Do you mind if I ask who is treating you in Georgia?  I've had trouble with my liver, too, but just did a liver cleanse (to the tune of about $250).  But, my liver enzymes are finally normal again.  Will insurance pay for IVs?  My doctor won't give them.


georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 6:52 PM (GMT -6)   

Stutterbug:  I highly recommend Progressive Medical Center.  Any of the doctors there are good.  770-676-6000.  Even though my numbers are bad, I am so much better than when I started going there a year and a half ago.  I take no "as needed" drugs or OTCs anymore, and I've cut the dose of all my other meds except Plaquenil in half.


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/10/2009 6:54 PM (GMT -6)   
I was directed to DR. B in milledgeville. She is a GP and is very good. She just recently found someone who is willing to do the IV meds. I am not completely sure if and how much the insurance is going to pay. Georgiagirl told me about her. I was taking Cymbalta, which really messed up my liver. I am better now though. Do you take any other meds that may be causing the liver prblms?

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/10/2009 6:55 PM (GMT -6)   
Where is this medical center at? Is it a LYme friendly enviornment?

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 6:58 PM (GMT -6)   
The medical center is on Shallowford Road (Ashley Dunwoody exit).  It is very Lyme friendly.  I thank God every day that I was led there.  I don't even think I'd be working anymore otherwise.  I'd be interested in getting an opinion from your doctor is you don't mind sharing.  If she's a GP, she's probably in network.  Who is going to do the IVs?  Are you working?

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/10/2009 7:07 PM (GMT -6)   
Funny you ask. I just quit my job TODAY! My husband and I are going to really cut down on spending so I can stay home. I feel like working is making ne worse. I have a lot of ortho. problems and the standing and using my arms is killing me. I have always worked. Having LD for so long, I feel like I have adapted in many ways with out even knowing it. I got bit when i was 6 so I dont remember not feeling this way, although it has gotten worse in the last 4 years. I guess I just dragged myself around all those years. --very strange 
   I do not kow the doc. name who could possibly give the IV. I think it is a bit hush, hush. Are you going to the LD viewing of Under our skin in Roswell? I am and I am very excited.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/10/2009 7:13 PM (GMT -6)   
That 13 was in Aug. and no I haven't retested.

But I do feel better than I did then. So far...

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 7:30 PM (GMT -6)   
I'm not sure if I can get off work to go the showing in Roswell, but I saw it in Fayetteville.  It was amazing, but it upset me terribly.  When you see it, I was so much like the manager of U2 and the forest ranger.  Don't miss it!  I really hope you contact Progressive.  And, I'd still like to know about your doctor and who will administer IV.  I'm sorry you're not able to work.  I actually don't wake up every day wondering if I'll be well enough to work anymore.  It's a terrible way to live.  I have to believe that you, like I, could be delivered from this.

georgialyme
New Member


Date Joined Jan 2009
Total Posts : 16
   Posted 1/10/2009 7:31 PM (GMT -6)   
Seeingstars:  It's time to get retested.  And, I want to know if your protocol is working.  Who is treating you, if you don't mind my asking.  I'm glad you're feeling better.
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