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NK17 , sorry I haven't answered properly. Thank you so much for your message. You've got me thinking about Dr. Kogelnick again for sure. Honestly, I think I didn't choose him because he seemed so young (which can be a plus) and I didn't know anyone who had seen him. I have talked to/read about 3 or 4 people's experiences with Dr. Chia, so it seemed a safer bet.
Unbelievably, my insurance runs out the day before my appointment with Dr. Chia, so regardless of what I do, it'll be out of pocket. I know you can't tell me which one you would recommend for me between Dr. C and Dr. K, but.... which one would you recommend?! I know Dr. Chia is going to suggest Equilibrant, perhaps a biopsy, maybe antivirals (but I don't think my titers will be high enough) and tell me I need to pace myself more. What will Dr. K have to offer? That extra hour on the plane does make a huge difference and I'm not committed to Dr. Chia yet -- I could reschedule to buy more time.
Thank you again!
EMilo as you say it's very hard to tell another patient which ME/CFS doctor to see.
Since Montoya is now out of the picture for us, if we look at your two choices right now it comes down to two doctors, none of which will be covered by your insurance (due to expiration).
They're both excellent caring doctors, one younger, but surely not without experience and one older, but experience is somehow a relative thing when you practice in a neglected field of medicine such as ME/CFS (neglected by other researchers, doctors, pharma companies and the government).
Dr. Kogelnik's approach is certainly more leaned on the A/V for the herpes viruses (Famvir, Valcyte, maybe Valtrex) and biologics (Rituxan), he's also well placed as far as potential and different clinical trials are concerned (he works tirelessly for this).
Right now he is on the East Coast working on one and this involvement in research surely steals him away from the clinic and that's why he now has a colleague (Dr. David Kaufman) working with him at OMI.
Dr. Chia didn't have much to offer me when I saw him. In my case I was many months into my first A/V treatment with Dr. Kogelnik. He suggested Equilibrant, because of my high viral loads of several enteroviruses and medical history (I remember he got me tested for those and the lymphocytes subset panel, via Quest diagnostic and Arup, before our visit). He suggested a gastroscopy, which I ended up having at my then gastroenterologist clinic. I still have to decide if I want to spend $250 to get the tissue biopsied by his lab and confirm the presence of enteroviral RNA in my stomach's tissue. Eventually I'll do it, but since there is no approved A/V treatment for those buggers (none in the pipeline, except maybe a new super expensive and off label antiviral for Hepatitis C virus) I'm not in a hurry.
Equilibrant seems to work, by anecdotal evidence, in some patients. Dr. Chia will surely warn you about it's possible side effects such as overstimulation of your already dysfunctional immune system and making you fall into a full blown autoimmune mode. That's why he suggests to start very low and slow and titrate your way up with it. Also his male patients seem to do better on it, if I remember well.
I've not tried it yet, I have a box, but I'm still not sure what to do. I know other here on PR take it while on other A/Virals (SOC probably can confirm this).
Since I have not seen Dr. Chia in almost 2 years now I don't know if he's involved in any research.
Dr. Kogelnik is well positioned in Silicon Valley where there's money, tech companies looking and working in bio-informatics (he has a PhD in it), pharma companies (Roche-Genentech has quarters in SF).
Most important of all he is working with Prof. Ron W Davis of Stanford (genetics, genomics, theragnostics are promising fields of research), with Prof. Montoya and he his in strict contact with Jay Levy at UCSF, Dr. Dan Peterson (historical memory of the Lake Tahoe outbreak) and Prof. Fluge and Dr. Mella, to name a few.
In the end you'll have to trust your instinct, make a financial investment (hopefully with a return
and make an educated guess based on your symptoms and all the labs you have already done.
Ideally we wouldn't have to make all these tough choices, especially while so weak and ill.
Hopefully soon we'll have sorted subgroups and with this we'll have access to drugs such as Ampligen, Cidofovit, anti-retrovirals, Rituxan etc etc etc
Let us know what you decide to do, in the meantime try to take good care of yourself
NK17
Safe? Near enough to stores or the ocean if my mother wanted to venture out? I'm thinking, if it works, we can take a taxi to the airport and Dr. Chia and grocery stores. THANK YOU!
