My new PCP wanted to run a WB, since I have never had one done. (I have been on abx since march)
I had a pretty good feeling that it would come back CDC negative, but I thought at least 1 or 2 bands would show positive. But there were no positive bands at all, and it says lyme antibodies total .14 = negative. This test was run at the Cleveland Clinic.
I had the dot-blot assay done through Igenex and it was positive.
I have been going back and forth if I really have lyme or not, and now this just makes me question it even more. But then I try to rationalize how I had dead bacteria in my urine..
Is it common to have NO positive band at all?
Posted by onbam (Member # 23758) on :
Cleveland Clinic is not allowed to diagnose Lyme. It is likely that all of their "tests" come back that way. Any positive marker on anything means that yo have it. Can you get to an LLMD? will pm.
Posted by seibertneurolyme (Member # 6416) on :
Many people with primarily neuro symptoms are frequently seronegative.
Lots of reasons why you could have a negative test.
The important question is are you responding to the antibiotics?
Bea Seibert
Posted by cityroam1 (Member # 24787) on :
I have been through 2 LLMD's, I have been "coasting" on doxy for the past 2 months till I find a new one. I have 1 month script left.
There are others LLMD's in my area, however my money tree didn't bloom this year so it's not in the cards. They want cash and lots of it..
There is another LLMD near me in PA, but from what I hear he is just as bad as the one I already went to.
I am not sure what to do..
I didn't know Cleveland Clinic wasn't allowed to test for lyme....
Posted by Lymetoo (Member # 743) on :
Well, they won't touch Lyme .. let's put it that way. Same thing with Johns Hopkins and Mayo. NO WAY are they going to diagnose or treat a Lyme patient.
Go with Igenex and GET WELL!!
Posted by cityroam1 (Member # 24787) on :
I have been getting treatment since March, and only getting worse.
I don't go to the CC, but another large hospital in the Cleveland area, for some reason the test was sent to CC.. I was surprised, I assumed it would go to quest, lab corp etc..
Even more surprised that it says no bands present at all. I wonder if this is typical?
Posted by Keebler (Member # 12673) on :
- With your symptoms, history and a dot-blot assay done through Igenex and it was positive - I'd say you need a good ILADS-educated Lyme Literate MD (LLMD).
For your PCP to run an inferior WB though CC shows he is not LL. You need to find a LLMD and another PCP who at least has a clue to that he/she can offer you basic support.
You did not have a proper Western Blot test. They do not do it correctly.
Feeling worse in treatment is just how it goes. There are things to help but it's unreasonable to expect to feel much better for quiet some time. The herx reaction needs to be managed with good liver support?
What is your current liver support? Your adrenal support? Your anti-candida measure ? (Probiotics?)
More to figure out by my tea kettle is calling. there are answers. Hold on. -
Posted by kimmie (Member # 25547) on :
When I did test positive on western blot through 3 different labs...I tested negative at The Mayo Clinic...? they do all their own lab test and assured me I did not have lyme.
I even tested + with labcorp and spectrum and stoney brook.
Posted by timaca (Member # 6911) on :
cityroam~ Ask your PCP to consider testing you for HHV-6, EBV at Focus Diagnostics Lab, and enteroviruses at ARUP lab. You could also consider a repeat WB at Stonybrook.
For more info there is a thread on lymenet: Tests to Consider. It should be on the first 5 pages...
Best, Timaca
Posted by Keebler (Member # 12673) on :
- If you had dot-blot assay done through Igenex and it was positive I don't see why you need any more lyme tests. Coinfections, though, must be considered.
So, adding to Timaca's note, links are here:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I had co-infections tested through standard lab = negative.
I tested positive for old EBV and CMV. I don't think I have had any of the other tests mentioned in the link. I will check into those.
I know that I tested positive for dot-blot, but that shadow of a doubt creeps in when I have so many other dr's telling me that if WB is neg I don't have lyme. Even though they can't explain why dot-blot was positive.
The only things I take are D3, Omega's, B complex and probiotic.
I have asked both the LLMD's that I went to about liver, adrenal and detox and they basically ignored me. One went so far as to tell me NOT to drink lemon water. (he's no longer practicing).
![[bonk]](graemlins/bonk.gif)
I have been "coasting" on doxy for the past 2 months till I find a new one. I have 1 month script left.