posted
I saw an ID doctor a couple weeks ago in Germany at the US military hospital. He was very kind and helpful. He tested me for coinfections, lyme, viruses, other bacteria, and did a LP to check for lyme and MS. He did believe I have lyme and recommended a month of IV Rocephin. He didn't ignore my IgeneX labs.
I just got off the phone with him and ALL my tests came back NEG. I'm not sure what labs he used (I'm sure it was Quest). The only thing that came back abnormal was the CD57 again. It was VERY low at a 5. It's gotten lower. Last time it was a 13. He also checked my CD19 (don't know what that is) but that too was low. He said the CD57 is irrelevant when it comes to lyme. He now is doubting I have lyme because of the NEG labs I asked him how reliable the labs are and he said they are pretty good (which I know is crap.) Anyways, he thinks I may of had lyme, but it is gone now. Sounds like the typical ID explanation, huh? However he still recommends the IV just in case. I think that is weird too...that he still recommends it even though he doesn't think I HAVE lyme now.
He is referring me to a Hematologist, and Immunologist and some allergy/immune dr. That will be good, because of the low CD numbers, but I still think it is lyme. He did also say that because of the low NK cells I probably get sick often. I don't! I never get sick with the common stuff.
Oh and the only band that came up on the WB was IGG 41 (again this was NOT IgeneX).
Maybe I don't have lyme disease afterall??? I would hate to think it's lyme when it really could be something else. However, EVERYTHING has been tested and EVERYTHING has been normal except to the CD counts and my IGeneX results.
He told me he thinks the Heavy ABX regimen I was on was only doing me harm. Which does make me wonder, cause I've been off abx for like 3-4 weeks now and DO feel better off. Still very sickly and SO tired and weak, but not as achy or dizzy.
I know that most people here are going to DISS on this Dr. but I want honest advice.
What should I do? Maybe this isn't lyme? I just can't ignore those IgeneX labs that look convincing it's lyme.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Well, he must be suspicous of present lyme to continue the rochepin. That's good.
There's alway the possiblity you don't have lyme but some other unknown bacteria. Any improvement in sx with rochepin?
Could your lyme bacteria be a strain that Quest in Germany doesn't look for? Where do you think you were infected?
I see Igenex seen things that this other lab didn't? I'm sorry you have to go down the road of all those other docs.
Maybe you will find a doc in there that can find an answer to some other possible bad guys that keep you ill. There's always hope. I think???
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
I haven't started the Rocephin yet. And the Quest lab would of been from the states. He said they send the blood stateside. I think I infected somewhere stateside as we've only been in England for a year and I've been sick longer. I guess I got ill in Oklahoma or possibly Spain.
Anyways I just got an email from ID and he talked with Immunologist and wants me to see one. He said after I finish the IV Rocephin that they will recheck my cell counts (cd57,19, and B cell) and if they are still very low he said I am a candidate for a bone marrow Biopsy. This worries me horribly as now I'm concerned about cancer.
Anyone have any knowledge about ANY of this? Thank you!
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Kare, Sorry originally reading you post I thought you'd been on IV. Misunderstood.
Well I know from personal experience that 2+ yrs of orals with early stage Lyme & ?? 3 Labcorp negative titer, they didn't actually do the full WB. Labcorp always negative. PCP ordered 30 days of IV rochepin and then another 2 more weeks.
One good day for that. Two weeks after stopping Rocephin and first visit to LLMD this is what Igenex found:
IgG all negatives (Dr C LLMD said "they messed your IgG part of test up by looking at the report and it didn't matter any way. You are highly chronic lyme)"
Testing since that time Labcorp again negative, no need to do full WB bands and then Quest and Labcorp negative on bartonella. NOT!!!!! MY PCP has tried a few times to get regular labs to find something and do a full blown WB. They only do the ELISHA and stop. Idiots!
Quest has identified mycoplasma Pn and other viruses in me. Sed rates and c-protein panels are elevated also. Looks like I'm continually fighting viruses by bloodwork also. No I'm not, colds and flu are very rare for me.
I'm just blessed enough to have a PCP that's smart enough to realize my body is full of lyme and company and it hasn't been conquered by years of trying. YET!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| 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/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
I asked him how reliable the labs are and he said they are pretty good (which I know is crap.) Anyways, he thinks I may of had lyme, but it is gone now. Sounds like the typical ID explanation, huh? However he still recommends the IV just in case. I think that is weird too...that he still recommends it even though he doesn't think I HAVE lyme now. 
Printer-friendly view of this topic