Upcoming appt at Open Medicine Institute!

[Sushi]

Wonderful @Gingergrrl43

 

[xchocoholic]

As a fellow pwc, I'm both happy for you and jealous of your doctor's appt. Lol. Hope this works for you. Tc .. x

 

[Valentijn]

It looks like very thorough testing, @Gingergrrl43 - Quite similar to what KDM tests for! I think you've found a very good doctor to help you

 

[justy]

So happy these days whenever I hear of someone getting through testing!

Good luck with it all - so many of us on these boards are embarking on new journeys of healing and its great to be able to support each other.

 

[Helen]

He said he hates the name CFS and he calls it "Viral Re-activation Disease caused by Immune Impairment."
....

Thanks for sharing. "Viral Re-activation Disease caused by Immune Impairment." Interesting.

 

[Hanna]

@Gingergrrl43 - That's sound promising! Keep us informed about how it goes. So good you don't have to travel too long to see a good Doc.

 

[xchocoholic]

Hi @Gingergrrl43

Does he order stool and saliva tests too ? I was thinking KDM uses serum and these. I heard that stool and saliva tests were better at detecting certain pathogens and chemicals than serum. My integrative doc used all three.

Tx .. x

 

[Gingergrrl]

Hi @Gingergrrl43

Does he order stool and saliva tests too ? I was thinking KDM uses serum and these. I heard that stool and saliva tests were better at detecting certain pathogens and chemicals than serum. My integrative doc used all three.

Tx .. x

@xchocoholic I got the sense he can order any test we want and can coordinate w/my ND in LA. I did the stool and saliva test fairly recently w/my ND and have an extensive stomach/GI protocol through her which for now he said to continue.

He said there is an even more accurate cortisol test than saliva I think called Cortristym that he might have me do in the future. I think he wants to see all my results first. He doesn't do the mito testing and felt there are not great tests for this but said to go ahead w/the one that my ND ordered from Metametrix when I get home.

He also wants me to do 23andme and we just got the test kits at home but haven't done them yet.

 

[Gingergrrl]

Thanks for sharing. "Viral Re-activation Disease caused by Immune Impairment." Interesting.

@Helen yeah I really liked that name, too and thought it was a good description!

 

[Gingergrrl]

Thanks to everyone for all your support and good wishes. I thought about all you guys undergoing treatments all over the world @Hanna in Israel and @justy @Valentijn in Belgium and several of you guys who also travel to OMI and it gave me extra courage and felt like you were all in the room with me like an invisible army of ME/CFS warriors (I heard that phrase in another thread and can't take credit for the term but yesterday really felt its power.)

 

[xchocoholic]

It's great seeing such comprehensive testing being run on pwcs now.

And great that we have this info on the web so other pwcs can become familiar with this. It's a lot to learn, esp if you have me/cfs.

I was drowning in medical terminology, inadequate healthcare and unknowns when I first saw my integrative doctor around 2008. I was fortunate that she knew this and helped me get over the trauma I'd experienced in my healthcare. I'm not cured but I certainly can't blame this doctor.

Hopefully this road won't be so traumatic now.

Thanks everyone. Tc .. x

 

[Gingergrrl]

@xchocoholic I agree and I never would have understood the terminology, known what to ask for, or ever found this Dr without the PR website. The best thing that could ever happen would be if my posting this thread ends up helping someone else down the line who I may never even know about. It would help make all my suffering be worth something.

 

[NK17]

@xchocoholic I agree and I never would have understood the terminology, known what to ask for, or ever found this Dr without the PR website. The best thing that could ever happen would be if my posting this thread ends up helping someone else down the line who I may never even know about. It would help make all my suffering be worth something.

Let's name it the PR domino effect

 

[Gingergrrl]

Let's name it the PR domino effect

@NK17 I love it! The PR domino effect...

 

[Gingergrrl]

Just wanted to post that in about an hour we are leaving on our second road trip back up to OMI for my follow-up appt with Dr. K on Mon. Thanks again to everyone for being so supportive throughout this whole process.

 

[soxfan]

@Gingergrrl43- I just saw this thread and am so excited to read all this. I am very impressed with all the bloodwork they did because Dr. Komaroff in Boston only did a few of those tests.

I am actually going to print that list to bring to my doctor appt. next month so I can get some of those done. Thank you for posting the list!

I will be totally anxious to hear how your follow up appt. went and hope there will be some good news.

I am very sensitive to meds as well and couldn't tolerate the Valcyte at all. I never even made it up to the dose he wanted me on....good luck and can't wait to hear!

Oh I had that cortisol test done where they inject you with the stimulating cortisol to see how your adrenals respond. My doctor also said that was a much better test than saliva.

 

[SDSue]

I'm with you ……. in spirit Can't wait to hear the plan of action.

 

[Gingergrrl]

I'm with you ……. in spirit Can't wait to hear the plan of action.

@SDSue thanks and I feel all you guys here in spirit with me! We are at the half way point in the drive and just stopping for lunch.

@soxfan Please let me know if I can be of any help re: the tests for your new doc. I know a few tests he ran were specific to me but most were to check all the viruses & immune functioning. I tried to get these tests run by local doctors at home but always told no (except for EBV which I know is positive on all tests.)

 

[NK17]

I'm with you all the way @Gingergrrl43 .

 

[AndyPandy]

Hi @Gingergrrl43. Hope the visit goes well. Can't wait to hear about the appointment.