Mary
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I saw Dr. Kaufman last Tuesday. He spent about an hour with me, primarily going over my history and what I believe has helped me and where I am now.
He noted that I’m unusual for a CFS/ME patient in that I don’t have brain fog, cognitive dysfunction, pain, or headaches. I DO have PEM, impaired immune system, low NK cell count, hypothyroid, and trouble sleeping. I wonder if this difference is due to the very slow onset of full-blown CFS for me (13 years), instead of a sudden severe viral infection. Or it could be related to viruses I do and don’t have, or who knows? Maybe my blood will provide some clues on this (fortunate for me) anomaly.
He also noted that two years ago my HHV6 numbers were very high and said that if he had been treating me, he would have put me on an antiviral. This test was done by my GP who knew nothing about CFS, and I didn’t know enough myself.
They drew 12 - 15 vials of blood for testing (I should have counted, but it was a lot!) And then an additional 7 or so for research purposes. Amazingly, and I am so grateful, all this blood work should be covered by Medicare - whew! I have straight Medicare, not a Medicare Advantage plan.
He also ordered SIBO test which I’ll have done at Cedars Sinai in Los Angeles, hopefully soon, am trying to get it scheduled. Cedars Sinai indicated it probably would be paid by Medicare, but will see. He also ordered some stool tests through Quest, and a saliva cortisol test. I had to pay $140 for the cortisol test - but not bad at all for out of pocket for lab work, much better than I had expected.
I think he orders the SIBO test for all CFS/ME patients, and in order to have the test done, you have to follow a certain diet for a short period of time prior to the test, and then I think be fasting for it. If I had known this ahead of time, I could have been prepared to do the test at his office. And also would have arranged to have a later flight home to allow time to get the testing done. Anyways, for anyone making an appointment, you might want to ask about what you would need to do beforehand so that you could have the SIBO testing done while there.
Dr. Kaufman was genial and patient, answered all my questions, and didn’t offer any opinions (apart from re HHV6 above) - I’m sure he’s waiting to see the lab work. He did say that SIBO or gut problems were extremely common with CFS/ME.
And I don’t know what blood work he’s ordered. I will find out and post when I get that info. I’m sure it’s similar to what everyone else had done.
FWIW, I ended up staying at a Motel 6 on Ahwanee Avenue in Sunnyvale - it was $109, including tax, and the room was clean, they’re nicely updated with a modern feel, but are basic no-frills rooms, but that was fine with me. And, they allowed me to check in early (11:00 a.m.) free of charge - they had a room open, for which I was very grateful.
And with the help of a AAA street map and garmin GPS which I brought with me, I found the area easy to get around. But am glad I highlighted driving routes on the map beforehand - it made things much easier.
And for those of you from southern California, I got a cheap flight on Southwest from Burbank to San Jose. I had initially thought you had to fly into San Francisco and did not want to attempt that. It was very easy flying out of Burbank and a short jog from the San Jose airport to the Sunnyvale/Mountain View area. And I used wheelchair assistance coming and going to save energy. Southwest was very good about this and actually I got priority boarding - one of the first on the plane - because of this. The wheelchair person in San Jose took me from the arrival gate all the way to the rental car building across the street and to the Enterprise counter - he was very kind.
He noted that I’m unusual for a CFS/ME patient in that I don’t have brain fog, cognitive dysfunction, pain, or headaches. I DO have PEM, impaired immune system, low NK cell count, hypothyroid, and trouble sleeping. I wonder if this difference is due to the very slow onset of full-blown CFS for me (13 years), instead of a sudden severe viral infection. Or it could be related to viruses I do and don’t have, or who knows? Maybe my blood will provide some clues on this (fortunate for me) anomaly.
He also noted that two years ago my HHV6 numbers were very high and said that if he had been treating me, he would have put me on an antiviral. This test was done by my GP who knew nothing about CFS, and I didn’t know enough myself.
They drew 12 - 15 vials of blood for testing (I should have counted, but it was a lot!) And then an additional 7 or so for research purposes. Amazingly, and I am so grateful, all this blood work should be covered by Medicare - whew! I have straight Medicare, not a Medicare Advantage plan.
He also ordered SIBO test which I’ll have done at Cedars Sinai in Los Angeles, hopefully soon, am trying to get it scheduled. Cedars Sinai indicated it probably would be paid by Medicare, but will see. He also ordered some stool tests through Quest, and a saliva cortisol test. I had to pay $140 for the cortisol test - but not bad at all for out of pocket for lab work, much better than I had expected.
I think he orders the SIBO test for all CFS/ME patients, and in order to have the test done, you have to follow a certain diet for a short period of time prior to the test, and then I think be fasting for it. If I had known this ahead of time, I could have been prepared to do the test at his office. And also would have arranged to have a later flight home to allow time to get the testing done. Anyways, for anyone making an appointment, you might want to ask about what you would need to do beforehand so that you could have the SIBO testing done while there.
Dr. Kaufman was genial and patient, answered all my questions, and didn’t offer any opinions (apart from re HHV6 above) - I’m sure he’s waiting to see the lab work. He did say that SIBO or gut problems were extremely common with CFS/ME.
And I don’t know what blood work he’s ordered. I will find out and post when I get that info. I’m sure it’s similar to what everyone else had done.
FWIW, I ended up staying at a Motel 6 on Ahwanee Avenue in Sunnyvale - it was $109, including tax, and the room was clean, they’re nicely updated with a modern feel, but are basic no-frills rooms, but that was fine with me. And, they allowed me to check in early (11:00 a.m.) free of charge - they had a room open, for which I was very grateful.
And with the help of a AAA street map and garmin GPS which I brought with me, I found the area easy to get around. But am glad I highlighted driving routes on the map beforehand - it made things much easier.
And for those of you from southern California, I got a cheap flight on Southwest from Burbank to San Jose. I had initially thought you had to fly into San Francisco and did not want to attempt that. It was very easy flying out of Burbank and a short jog from the San Jose airport to the Sunnyvale/Mountain View area. And I used wheelchair assistance coming and going to save energy. Southwest was very good about this and actually I got priority boarding - one of the first on the plane - because of this. The wheelchair person in San Jose took me from the arrival gate all the way to the rental car building across the street and to the Enterprise counter - he was very kind.