Mary
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The phone call follow-up appt on Monday went okay. Amazingly, all my viral numbers are okay. My HHV6 is down to 160, from 640 two years ago. I don't know how this happened, but obviously it's a good thing. He's not putting me on an antiviral and instead is concentrating on mitochondrial support - I don’t think he knows what to do with me. He did have my labs from Sarah Myhill from 5 years ago and could see how impaired my body was in making ATP.
FWIW, I've been taking Inosine for 1 to 1-1/2 years (cannot remember exactly), and started BCAAs and glutamine last November, and maybe some of these somehow helped my HHV 6 numbers to drop - it's all I can think of.
Anyways, he is recommending I try 2 products - MitoQ (an expensive form of CoQ, supposed to be better absorbed) and Niagen (again, expensive), which is related to niacin but supposed to help with energy. So I will try them, though I don't have a lot of hope for these products.
A couple of my immune numbers are low: NK cells are very low, as before; CD19 (an antibody) is very low; vasopressin is non-detectable - all these are typical for CFS. And my CD4 number is low, though not as bad as the CD19. And apart from these, my labs were pretty okay.
I don't have POTS. And I don't have brain fog or pain. I do have PEM and immune dysfunction - so seem to be atypical CFS patient, but definitely a CFS patient.
Oh - cortisol is borderline low. It follows the normal cortisol curve, but is just below where it should be all the way across. He's not starting me on cortisol right now and I told him I had used adrenal glandular in the past.
And very surprising to me I was negative for SIBO. I had the breath test done at Cedars Sinai in Los Angeles.
And I reacted very badly to the ldn he had me try. I stuck with it for 9 days and got extremely tired, depressed, spacey, could not function - had to rest all day, I started with 1.5 mg. and kept reducing the dose and got down to 0.125 mg. I finally stopped it and saw my chiro the other night who said my adrenals were blown out from the ldn so have to increase the Drenamin (adrenal glandular). He also said the ldn "turned off my brain" - yeah, it sounds strange, but he recommended DHA (one of the omega 3s in fish oil), for which I tested very strong, so I have ordered some of that - it's never ending! DHA is supposed to be very good for brain health, and some recommend that you take at least 3 times DHA than EPA (I think most fish oils are the other way around, but that's another story) Also FWIW, my chiro has never hurt me and has helped me on several occasions when the doctors couldn't do anything so I'm willing to try his recommendations.
Dr. Kaufman was thorough and I like him - he just doesn't have any answers for me -
And I believe that Medicare paid for all my labs, except for the saliva cortisol test ($140) - amazing! (At least I haven't received any bills yet! but don't think I will)
FWIW, I've been taking Inosine for 1 to 1-1/2 years (cannot remember exactly), and started BCAAs and glutamine last November, and maybe some of these somehow helped my HHV 6 numbers to drop - it's all I can think of.
Anyways, he is recommending I try 2 products - MitoQ (an expensive form of CoQ, supposed to be better absorbed) and Niagen (again, expensive), which is related to niacin but supposed to help with energy. So I will try them, though I don't have a lot of hope for these products.
A couple of my immune numbers are low: NK cells are very low, as before; CD19 (an antibody) is very low; vasopressin is non-detectable - all these are typical for CFS. And my CD4 number is low, though not as bad as the CD19. And apart from these, my labs were pretty okay.
I don't have POTS. And I don't have brain fog or pain. I do have PEM and immune dysfunction - so seem to be atypical CFS patient, but definitely a CFS patient.
Oh - cortisol is borderline low. It follows the normal cortisol curve, but is just below where it should be all the way across. He's not starting me on cortisol right now and I told him I had used adrenal glandular in the past.
And very surprising to me I was negative for SIBO. I had the breath test done at Cedars Sinai in Los Angeles.
And I reacted very badly to the ldn he had me try. I stuck with it for 9 days and got extremely tired, depressed, spacey, could not function - had to rest all day, I started with 1.5 mg. and kept reducing the dose and got down to 0.125 mg. I finally stopped it and saw my chiro the other night who said my adrenals were blown out from the ldn so have to increase the Drenamin (adrenal glandular). He also said the ldn "turned off my brain" - yeah, it sounds strange, but he recommended DHA (one of the omega 3s in fish oil), for which I tested very strong, so I have ordered some of that - it's never ending! DHA is supposed to be very good for brain health, and some recommend that you take at least 3 times DHA than EPA (I think most fish oils are the other way around, but that's another story) Also FWIW, my chiro has never hurt me and has helped me on several occasions when the doctors couldn't do anything so I'm willing to try his recommendations.
Dr. Kaufman was thorough and I like him - he just doesn't have any answers for me -
And I believe that Medicare paid for all my labs, except for the saliva cortisol test ($140) - amazing! (At least I haven't received any bills yet! but don't think I will)