Does anyone feel like Dr Bonillla is getting up to speed? It makes sense that a new doctor would know very little about CFS since not much is known about it anyway. Hoping after a few months Dr Bonilla is grasping some understanding? I had a visit on Monday and was proud of myself for averaging 4000 steps a day. Spread throughout the day. He chided me that was too much. I had been. Able to do the 4000 steps to day without crashing.
I left feeling kind of defeated. He prescribed plaquenil in addition to the famvir I have been on since Dec. He said its safe in the the doses he gives, 200 milligrams twice a day. ( not sure how I feel about this) then told me I really really need to pace. He said don't you want to get well and do things with your life in the future. With my body, I have noticed moving less actually makes it harder to do anything overall.
I also tried to show him some issues I've been having with my lips. He said it was the virus flaring up and didn't even really look, but after doing my own research, it seems to be some Slight yeast infection.
Prescribing the plaquinel and not doing any labs but telling me to come back in 6 months seemed a little startling to me. Maybe it's supposed to be up to our primary to follow up with those things.? But it seems like the prescribing doctor would be the one to do such.??
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I will respectfully disagree, and ask others, if they are interested, to do their own research into treatment of this illness in Europe. Good luck to you, JES.
Everything said in this thread is of personal interest to me! I have been ’with’ (= 20 min visit to PA twice a year) Stanford MECFS clinic for 2 years. I did get tests done on the first visit, and when I asked if they needed to be updated a couple of years later I was told 'oh no, we don’t repeat tests'. I had HSV and EBV.
However I was prescribed Valcyclovir, 500mg 2x a day, which did not have noticeable bad effects, and I don't get lip sores any more, which is very nice.
The mecfs gets worse and worse.
Was also told to have 5k vitamin B12 plus 2-3 k Mfg folate because of MTHFR. I have no idea if that does anything or not. But that's it.
On a telephone consult in Sept with
PA I complained again about bad OI and dizziness. She said I should go to the autonomic disease dept. at Stanford. In a couple of days I got a letter from the AD Dept, telling me how my doctor should apply. I jumped through many hoops, for weeks and still have not had an appointment; the thing that particularly puzzles me is that they would not look at the original referral from MOntoya's, dept, virtually down the road.
The other day I called MECFS to make my next appointment, and I was told the PA I always saw had left: 'So sorry, you should have been informed'. And booked me with Dr. Bonilla.
So I am interested to hear about Dr. B. Now thinking of cancelling a long expensive trip with hired driver.
Meanwhile I am planning to move back to England in the autumn - is it going to be even worse? I do have a good rheumatologist here, but she knows nothing about mecfs, although she’s very sympathetic.
Hard to know what to do.
