what does this mean

[ginak]

Hello everyone,

I received a call from my LLMD and she told me that I tested "weakly positive for lyme on IGG and IGM" but not CDC positive on my Igenix test. She told me that I tested negative for the co-infections. My CD57 was low. I have an appt to see her next week. I have no idea what to make out of this at all. Do I or do I not have lyme disease? Should I still be concerned about this possibly being some other horrible disease? She told me that I would start on antibiotics and she would discuss all of the test results in detail once I saw her. I know that I have EBV and low Vitamin D and my neuro is only concerned about this being MS. This is beginning to be emotionally draining and costly. Does anyone have any input or suggestions for me?

[ginak]

Hello Jason,

Thanks for the reply. Yes, I was indeed tested for all of the co-infections. I don't think I was tested for mycoplasma but will ask her about it on Thursday. She told me that I was IGG and IGM positive on the Igenix test. I have been tested for almost everything else imaginable. I will make a list of questions to ask her and go from there.

[jason80]

I wish I had advice for you because then I would have advice for both of us!  IMO, it's good to be equivocal either way (highly negative or highly positive), but most of us end up in the equivocal category. I was CDC positive by Igenex for IGM only, so by CDC total criteria, I'm still neg. But then tested by two other IDs I was equivocal negative.

My only advice is get all of your hard questions out and be sure to get them answered during your visit. Presumably you were tested for other things besides basic Lyme and your LLMD should go through that as well. It seems like doctors only want to go through what they consider interesting and/or to save time, but you want to know about the other tests as well. Otherwise, you end up going through your paper copies at home and find something that looks strange and it's too late to ask!

[ginak]

Hello,

I was under the impression that you were CDC positive, guess I was wrong. I do know that one can be CDC negative and still have lyme disease. I am anxious about my appt on Thursday but will try to hear my doctor out. I will make sure that I obtain copies of my labwork as well.

[patsy10]

I wouldn't worry too much until you see her.  You may have bands that show one +.  They bands can range from Negative to IND to +, ++, +++ etc....The fact that she said she would put you on antibiotics tells me she thinks it is a positive test. If you read about testing in the health pages  even one significant, positive band is important. There is a very good explanation about testing.

[ginak]

You are very right about this Platelet!

[PlateletGal]

It may be a good thing that you don't have a diagnosis, but can be treated for your condition. (PlateletGal thinking about healthcare insurance and "pre-existing" conditions).

[ginak]

Wonko,

Thanks for the reply. I don't know what to think of any of this right now, but will just have to see what the doctor says. The nurse told me that I had bands and +s showing up in many places, but still the doctor says only mildly positive. I am anxious to get on treatment. I am using Transfer Factors right now and Astragalus. I will continue to use that. She wants me to increase the Astragalus dosage and I will do just that. I just wish I had a straight up and accurate dx.

[PlateletGal]

Although I don't have lyme disease, I am on the same treatment as people who have lyme ! And I'm making progress !

[wonko]

Well, I don't think anyone can tell you what it means, she didn't give you a lot to go on!  Hopefully you can get the detailed results at your upcoming appointment.

I am CDC negative.  My Igenex Western blot I had 1 IgM band and 2 IgG bands.  You need 2 and 5 bands, respectively, to be CDC positive.  I had a pretty normal CD57 (around 100), and tested positive for one co-infection, and have a clinical dx of a 2nd.  I also had very low Vit. D.

I am approaching the 3-month mark into my antibiotic treatment, and have had a significant response.  I'm not well yet, but I have no doubt that whatever I do have, it is responding to my treatment.  

I relate to the emotional and financial drain that Lyme imposes.  Thankfully, while my initial testing and actual appointments are pricey, my antibiotics are cheap.  So it was more of an upfront cost, not a large ongoing drain.  I also view it as an investment in my future, as my ability to work was inhibited by my illness.  I am still employed, but at a reduced schedule.  I hope to get well and back to full time.  Without treatment, that wouldn't be an option.

Sadly, with the imperfections of the testing and the complicating factors that can cause people to test negative (patsy10 knows more about that than me), it is really difficult to ever really feel certain about a Lyme diagnosis.

I deal with the doubt, and I don't think I'm alone.  But overall, I am responding to treatment.  I gave other options over a year, going to many specialists and trying to thoroughly turn over every rock.  But I was perpetually told to "wait and see" while my condition deteriorated.  So while I do have doubts and frustrations, I do think tat I'm in a better place now.  And I do have hope that I will see more improvement and feel like myself again.

Of course you need to decide what to do for yourself.  But I would advice you to go to the appointment and hear her out and discuss treatment options.  The CDC criteria fail to pick up many many people who do respond well to treatment for Lyme.  I'm CDC negative, but I had a pretty obvious to antibiotics in a short amount of time, which helped solidify to me that I was on to something.