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My visit with Dr. Kaufman 9/1/15

Discussion in 'ME/CFS Doctors' started by Mary, Sep 6, 2015.

  1. Mary

    Mary Senior Member

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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.
     
    bspg, Jennifer J, Mackee and 15 others like this.
  2. Mij

    Mij Senior Member

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    @Mary do you experience cognitive problems when you're in PEM? Or is it just physical.

    I don't have headaches or pain either. My cognitive difficulties only occur when I'm really exhausted, but not bad in general.
     
    alkt likes this.
  3. Mary

    Mary Senior Member

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    @Mij - it's mainly just physical, extreme exhaustion, loss of energy. I can read while crashed, although it is harder to concentrate while exhausted - I wouldn't try to learn anything new while I was crashed as it takes energy.
     
    alkt and L'engle like this.
  4. Mij

    Mij Senior Member

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    @Mary I think cognitive dysfunction doesn't occur if we rest when we are physically exhausted. The brain uses the most energy than any other organ.

    I was asked about my cognitive function by an M.E doctor, but I had to think about it further because when I'm physically exhausted I don't try to learn anything new either or else I'd probably go dumb.
     
    Jennifer J, rosie26 and alkt like this.
  5. Mary

    Mary Senior Member

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    @Mij - gotcha. I've heard of people not having the same cognitive abilities with CFS/ME - they lose words, memories, etc. and I don't really do that. I do crosswords and Sudoku for relaxation, and actually lecithin has improved my memory.

    But you do make a point - maybe I've misunderstood what the cognitive difficulties with CFS/ME were - come to think of it, is that inability to understand what cognitive difficulties are, a symptom of cognitive problems itself? :confused::lol: who knows, maybe ...
     
    alkt and Mij like this.
  6. Mary

    Mary Senior Member

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    One more thing - He recommended I take ldn, 1.5 mg. I was planning to try it already but wanted to get his take on it. I'm holding off doing this until I get the SIBO test done in Los Angeles, because ldn can cause sleep problems and the last time I tried it (5 years ago) it made me very spacey. I have to be able to drive, especially in L.A.!
     
    alkt likes this.
  7. Sushi

    Sushi Senior Member Albuquerque

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    If you read the various LDN threads, you'll see that dose tolerance can vary from one individual to another. Some need to start at .5 mgs or lower in order not to get difficult side effects. It just means starting the titration at a lower dose.
     
    alkt, Mary and minkeygirl like this.
  8. Horse Crazy

    Horse Crazy

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    Mary,
    I have had slow onset CFS as well, over several years. I do have brain fog and brain exhaustion and it is the most predominant symptom. Have you been able to halt the progression of the syndrome at all?
     
    alkt likes this.
  9. minkeygirl

    minkeygirl But I Look So Good.

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    I had sudden onset with a virus. My cognitive dysfunction is one if my worst symptoms.

    Worse when I'm fatigued or in PEM.

    And thinking and using my brain can be as exhausting as doing something physical.

    Did we ever find out if taking LDN in the a.m. Still works as immune mod or av? No way can I ever take it at night and expect to sleep ever.
     
    Billt likes this.
  10. Sushi

    Sushi Senior Member Albuquerque

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    Researchers like Dr. Jared Younger at University of Alabama think it doesn't matter when you take it.
     
    Mary likes this.
  11. Mary

    Mary Senior Member

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    I'm better off than I was when I first started crashing in 1998. These are the major things that helped me (as far as I can tell):

    1. Starting Freddd's B12 protocol 5 years ago - I take 1600 mcg. methylfolate (divided doses) a day and 10,000 mcg. MB12.
    2. Potassium - after starting Fred's protocol, discovered my potassium issues - I take 1100 - 1200 mg. potassium gluconate a day in divided doses, and sometimes low-sodium V8 which has a lot of potassium. I used to get a horrible fatigue, separate from crashing, never knew what it was until I started Fred's protocol - low potassium. I don't get it any more.
    3. Branched chain amino acids and glutamine - I started taking BCAAs last November, and they cut my PEM recovery time almost in half - it was huge. I still take them.

    4. Detoxing - I used to detox a lot, I think a lot of it was from mercury. I tried Cutler's protocol (had all my mercury fillings removed in 1997 or so), but felt no different after 3 or 4 months. I don't know exactly how it happened, but it seems that 3 amino acids in particular which used to cause strong detox reactions for me, longer do so - and these amino acids are required for phase II liver detoxification. I stuck with taking smaller doses of these - glycine (for sleep), inositol (for sleep) and glutamine (for gut and immune system) and now take them with no problem. and I haven't detoxed in 6 or 8 months. see http://www.diagnose-me.com/treatment/liver-detoxification-phase-II-support.html

    5. P-5-P - energy picked up when I started this a few years ago.

    I've tried so many things for so many years, I'm sure I've forgotten a few other things. But these are what come to mind right now. And FWIW, muscle testing - both done by myself and my chiropractor - have been invaluable for me in many respects.

    Just remembered a couple of other things, and these the chiro helped me with:

    6. Liver detox - I did a major liver detox in 2002 or 2003, under supverison of my chiropractor. My digestion was badly screwed up, liver was overloaded with toxins it seems from a job I had at age 19 with heavy exposure to acetone, and my digestion improved 90% afterwards. I also started taking milk thistle. I felt sick and fluish and tired, and also it affected my brain , when my liver was so toxic. One glass of wine would make me sick for an entire day and it no longer does. I don't think I would have made hardlyl any improvement without this.

    7. Also started taking HCL with meals - helped my digestion and gallbladder and liver.

    8. Adrenals - they were wiped out and the chiro helped me with adrenal glandulars (Drenatrophin PMG and Drenamin from Standard Process), also pantothenic acid helped too.

    9. Gallbladder - in addition to HCL, AF Betafood by SP was invaluable when my gb was inflamed, probably related to my toxic liver
     
    Last edited: Sep 6, 2015
  12. Apple

    Apple Senior Member

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    Thanks for sharing, Mary. Dr Kaufman is one that I would love to see. He sounds great! Fingers crossed you get some answers or treatment soon. :)
     
  13. Mary

    Mary Senior Member

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    Thanks Apple! :nerd:
     
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