Before I jump the gun and celebrate these results...

SandyFeet, I'm feeling up and down, but generally better. I still have all the same symptoms, but less intense. I have more energy, but I have to be cautious about how much I do or else I pay for it. I'll actually be doing a Year 1 Stemaversary post at my blog in about a week or so.

The fact that I still have the same symptoms, only less intense, is troubling. I still don't feel "back to normal" although I feel like I did before I started treating in early 2016 - which is, still pretty tired and achy.

Girlie said...
Testing can’t be used to determine if we’re in remission or Lyme isn’t “active” anymore... unfortunately .We can’t rely on them when we’re testing to see if we have lyme either.
Was it a WB test?
A negative can just mean your immune system didn’t mount a response.
Was it a pcr? A negative could just mean in that relatively small sample taken - there weren’t any DNA of the bacteria identified.
Quest isn’t one of the better labs for Lyme and co testing
So if you feel like how you did prior to treatment - I would think you’re not in remission.. unfortunately.

Have you been treating since Infusio?

Is your new Dr a LLMD?

You know, I don't know what criteria Quest uses. My new doctor is not technically an LLMD, she's a holistic hormone doctor, but she is aware of Lyme. TBH, I have not done ANYTHING since Infusio. I've hardly taken my supplements. I've had a hard time doing them - forgetting etc. So no, I have not been treating. The only things I've really done is work on keeping my stress down, eating better, self-care, going easy on myself (not beating myself up over things). I told her I hadn't heard of anyone testing through Quest and she said they've gotten better at it. Who knows. I suppose if I really want to know, I'll do the Igenex - which is the first test I took in 2016. It is a bit disappointing to know it's not conclusive.

Girlie said...
Igenex - is the same - if you test negative on the WB - doesn’t mean you are in remission.


Maybe the newer tests with Igenex may be more helpful - the Ispot and Elispot ?
I think they may be more helpful in gauging progress.

But - what’s important is you don’t feel better (symptoms) than how you felt prior to treatment.

It's a sliding scale right now. I DO feel better, but all the same symptoms are still present. A year ago I couldn't get off the couch or bed and now *I am* doing things. I couldn't wash dishes and now I can wash some. It's progress, but not enough. I still have trouble getting up and down the stairs some days.

So what is the most reliable test these days?

SandyFeet, thank you <3

k07 said...
Quest is the same as Labcorp. Not very good. If you had lyme you will always show an IGG response. Many believe that you never totally clear the bacteria, but your immune system gets a handle on it. Very similar to the chicken pox virus. You get it and then it stays in your body forever. If your immune system is weakened and can't keep it in check, it will come out as shingles.

I would totally go on how you feel. Possibly look at other things that could be holding you back.

I'm tackling the hormone issue right now with some minor progress in that area. It's slow going with the holidays and all. Does anyone know HOW Quest and LabCrop checks for Lyme? What exactly do they do?

Check out what RawlsMD.com has to say about Lyme* testing. Some Lyme specialists don't believe that blood tests of any kind are very informative for chronic Lyme because it's in biofilms, cyst forms, and tissues - not in the blood stream. This is the same reason why people can be on IV antibiotics for a year and still have Lyme - because Lyme doesn't just hang out in your blood stream.

One testing alternative is the DNA Connexions urine test, which is a PCR test that looks for the DNA shed by Lyme and several co-infections. (Living things constantly shed DNA, and you excrete it in your urine the same as any other waste product, so any active infection in your body will be found this way.) There are other cheaper labs covered by insurance (c4a, c3a, cd57, VEGF, MSH) which indicate various forms of inflammation associated with Lyme, numbers of natural killer cells that Lyme depletes, and other indicators of continuing illness. Maybe your doctor (or another practitioner, if necessary) will order those for you.

Sorry there's not a better way to ease your mind. I hope one day we have better tests!

Sara (Lyme, ME, fibro, HPA axis dysfunction, POTS)

*I use "Lyme" here as a catch-all term for borrelia and all the co-infections.