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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Upcoming appt at Open Medicine Institute!

Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
I wanted to let everyone know that I got an appt with Dr. Kaufman at the Open Medicine Institute in Mountainview for mid-July!!! I reached his office easily and expected at least a six month wait but got an appt for two weeks away!

They are very reasonably priced for a CFS specialist and will bill my insurance for all the lab work. My husband will drive us the weekend before the appt so we are not rushed and it works out perfectly b/c he has business meetings in the same general area (but not on the day of my appt so he can be with me for the whole thing.)

I cannot thank everyone on the board enough for helping me to find this doctor and clinic and I never would have found them on my own. Several of you have PM'd me and I will be responding to everyone as soon as I can. I hope it is okay to publicly thank people (if not, please delete by moderator) but I want to especially thank @NK17, @Sushi, and @Ruthie24 for all of the detailed info. If I forgot anyone (due to brain fog) please forgive me.

This board has been a God-send to me and after attempting to reach four different CFS specialists for appts, I know that this is the one that is meant to be. I am confident that they can run all the bloodwork and tests that I need (viruses, immune system, etc) and know how to interpret them in ways that my local doctors cannot. After the appt, I will give the board a full report of my experience!
 
NK17

NK17

Senior Member
Messages
592
Very happy for you @Gingergrrl43. This is a first important step toward a targeted treatment and a good start on the long road to recovery.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Thanks again to all of you for your support in this. Hope you all have a good night (or day depending where you are located!)
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
@Sushi, @NK17, @SOC, @SDSue, @AndyPandy, @SeaShell, @Ruthie24, @WillowJ, @Hanna, @Valentijn @heapsreal @taniaaust1 and everyone else who has been so incredibly supportive of me, I wanted to let you know that we are driving up tomorrow for my appt at OMI. I am feeling really hopeful about it and about to start packing for the road trip! I can't thank you guys enough for helping me find OMI and for all the feedback as I made my choice (and all the support in general.) This board has been like my life-line this past month and any improvement that I (hope) to receive medically, I owe it all to you guys!
 
NK17

NK17

Senior Member
Messages
592
I'm very happy to hear that your ride was smooth and you've reached Mt.V safely ;)

I'll be thinking about you tomorrow, although I know you'll be in good hands with Dr. Kaufman.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
My appt at OMI exceeded my expectations and Dr. Kaufman spent over two hours with me & my husband. He had clearly read all of the med records that I sent and took a detailed history, did an exam, and answered all my questions (which were pages long!)

I would consider him both a genius and an angel and there is no doubt I my mind that he is going to help me get my life back. He said he hates the name CFS and he calls it "Viral Re-activation Disease caused by Immune Impairment."

I gave a massive amount of blood including some tests he felt were relevant for my specific history. Here is what he tested me for:

CBC metabolic panel
Five different EBV tests
CMV panel
HHV-6 panel
Lyme panel
Mycoplasma pneumonia
Parvovirus A&B
Natural Killer Cells Functional Assay
Vit D
Lymphocyte Subset Panel
Chlamydia Pneumonia
HSV 1&2
VZV Panel
MTHFR
Babesia & Bartonella
ANA Choice Panel
Rheumatoid Factor
PT & PTT
IGF-1
IGF BP-3
ASO
IgG subclasses

They take extra vials of blood for their CFS research, which I really wanted to do and gave consent for, but I was so weak at that point that we stopped and I am going to give the research blood next time. I have a follow-up appt in two weeks to go over the test results so my husband and I will be making another road trip!

He wants to do a very specialized test to check my cortisol (in the future) and changed the dose & how I currently take the beta blocker. He had practical advice for my POTS/OI and we talked about my thyroid/Hashimotos, cardiac issues, etc.

Treatment depends on what the results show but his instinct was that EBV and the herpes family of viruses are behind my problems. He said I do not have the symptoms of Lyme but we did a test anyway to be sure.

His treatment of choice was Valcyte but given how sensitive I am to meds and that I have never taken any anti virals, he thought valtrex or famvir were also possibilities (again depending what the results show.)

He also said it was fine to stay on all my current supplements until we get the results. He said they can do one or two day CPET testing but felt it could make me worse right now unless needed for disability.

I know I am leaving a lot out as my mind is spinning right now. There was a family who had come to OMI from Norway which made our drive from LA seem tiny and put it in perspective.

I am so grateful to @NK17, @Ruthie24 and @Sushi who all helped me to find OMI. I recommend it highly to anyone who is able to see Dr Kaufman and I hope he does not mind I am typing this! I did not meet Dr Kogelnick b/c he was out of town.
 
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