If you were in remission, what tests would you run?

[penny]

I am in a remission at the moment (due to my recent pregnancy I believe, postpartum entries in my other thread: ME and Pregnancy - one case study), and as much as I'd love to believe I will never get sick again, I just don't. I have to treat it as a remission.

So, what tests should I run now, while I feel like a normal person, to use later (if/when I relapse) to help identify possible courses of treatment? Or, what tests do you wish you had a "healthy baseline" for?

Thanks all!

 

[Sea]

Great idea Penny, but I don't have any good answers for you. Every time I consider a trial of some supplement I wish I had baseline testing before changing things, but again I don't know what to look for.

I think with pregnancy one of the changes that lead to feeling better is the increase in blood volume that persists for a few months after birth. So simple tests of autonomic function, poor man's tilt test could reveal differences now compared to when you're sick.

The other changes would likely be hormonal and immune so any testing there is probably useful, although hormone changes would be an ongoing normal process anyway if you are breastfeeding and not really a comparison to a non-pregnant non-breastfeeding state.

For immune testing I think I'd like a baseline of NK cells

 

[5ummer]

Hi Penny

I am currently debating if falling pregnant is a good idea being as sick as I am. In my reading I saw some speculation about why some woman with ME improve while pregnant. One theory that I found interesting (but I can't find the original source for, sorry) speculated that pregnancy regulates an overactive immune system response. I'm not exactly sure how your doctor would test for that, but it might be something worth bringing up. Good luck!

 

[Wendi C]

Hi Penny- I also had complete remission when I was pg. My symptoms came back pretty quickly. The birthing process and exhaustion did me in, however, i am getting back to feeling better and better with my different protocols now 3 years after my sons birth.

I told my MD that I'd like to recreate those good feeling hormones of pregnancy and he said he could give me HCG injections for $80/month, I think. Wish I could have afforded it at the time. Maybe it was more. Not sure but would have been a good experiment.

Good luck to you and congrats! It's a beautiful, crazy ride!

 

[Seven7]

Cytokine sub profile, Will tell you if you are overactive or not. NK cell number and activity if you can.

T cell subset and B cells count.

 

[SOC]

My daughter is currently in remission (depending on how you define remission, I guess). We know from testing that she still has immune dysfunction, so we have lots of immune testing at the Institute of Neuro Immune Medicine done once or twice a year to keep an eye on it. We also have her tested for the common infections in ME/CFS at the same time. I believe this is important because these infections can reactivate anytime and get out of control easily given the existing immune dysfunction.

We continue to test every few months to watch for things that could go south with ME/CFS -- thyroid, vitamin D, CBC, unrinalysis.

Our goal is to catch any hints of a slide back into illness quickly and deal with problems before they disable her again.