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Follow-up appt with Dr. Kaufman - lab results

Discussion in 'ME/CFS Doctors' started by Mary, Oct 1, 2015.

  1. Mary

    Mary Senior Member

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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)
     
  2. halcyon

    halcyon Senior Member

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    What exactly were you tested for?
     
  3. Mary

    Mary Senior Member

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    In terms of viruses, etc., here are my results:

    Cytomegalovirus - range < 0.90, result: <0.2

    Parovirus B19 AB (IGG) - range <0.9, result: 0.3
    Parovirus B19 AB (IGM) - range <0.9, result: 0.2

    Mycoplasma Pneumoniae AB (IGG) - range <0.9, result: 1.23 (this is a little high but he wasn't concerned)
    Mycoplasma Pneumoniae AB (IGM) - range <770, result: 34

    Varicella Zoster AB (IGG) - range <0.9, result: 2.83
    Varicella Zoster AB (IGM) - range <0.9, result 0.28

    EBV early antigen D AB (IGG) range 0.9, result <0.9
    EBV viral capsid AG (VCA) (IGM) range: - < or = 0.9, result <0.9
    EBV Viral Capsid AG (VCA) AB (IGG) - range > or = 1.1 positive, - result: 3.68
    EBV Nuclear AG (EBNA) AB (IGG) - range > or = 1.1 positive - result: 2.47

    HHV7 - range: < or = 47, result: 27

    HHV 1 - IGG AB not detected

    HHV 2 - IGG > 6.0

    HSV 1/2 IGM antibody not detected

    HHV6 IGG - range IgG < 1.10, result 1:160
    HHV6 IGM - range <1.2, result < 1.2

    Chlamydophila Pneumoniae - AB not detected

    Other numbers (abnormal):

    Alkaline phosphatase: range, 33-130, result: 30

    Absolute CD 4 cells: range, 490 - 1740, result: 472

    Absolute CD19 cells: range, 110 - 660, result 89

    Arginine vasopressin: range 1.0 - 13.3, result: < 1.0

    Absolute monocytes: range: 200 - 950, result: 99

    Iron binding capacity: range: 250 - 450, result: 197

    And high B12 and high carnitine, but no surprise, I take a lot of both and I know high B12 can indicate poor B12 utilization.
     
    Last edited: Oct 1, 2015
  4. Violeta

    Violeta Senior Member

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    What did he say about EBV being positive?

    And I have been thinking about arginine lately, because vasopressin is actually arginine vasopressin, and arginine is an inhibitor of EBV.

    I don't know if arginine can directly improve vasopressin levels, and I have yet to try it.

    EBV can alter mitochondrial function.

    Also, EBV can cause low NK cells.
    http://selfhacked.com/2014/06/27/homing-fundamenal-cause-epstein-barr-reactivation/
     
  5. Mary

    Mary Senior Member

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    He didn't say anything about EBV being positive - maybe because the numbers weren't that high? I don't know how to interpret them. But I could e-mail him. Don't many people have much higher EBV numbers? Also, I don't have symptoms of an active EBV infection.

    Interesting about arginine and vasopressin - will have to look into that.
     
  6. Mary

    Mary Senior Member

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    @Violeta - I just did a little research re my EBV numbers and it appears that my particular combination of positive and negative results indicates past infection. This is from Lab Tests Online: "If the VCA-IgM is negative but VCA-IgG and an EBNA antibody are positive, then it is likely that the person tested had a previous EBV infection."

    There's a chart on this page which shows the various combinations of EBV test results and what they likely mean:
    https://labtestsonline.org/understanding/analytes/ebv/tab/test/

    I'm sure I had a past EBV infection - I had chronic sore throats with accompanying fatigue for a couple of years, this was before I developed PEM. Maybe it was the beginning? Who knows - but I feel relieved that my numbers don't indicate a current infection.
     
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  7. Violeta

    Violeta Senior Member

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    Testing positive for a previous EBV infection is very common in chronic fatigue syndrome.
     
    Mary likes this.
  8. Valentijn

    Valentijn Senior Member

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    It's very common in everyone who's alive.

    And there are a fair few of us who test completely negative for ever having had it :)
     
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  9. Mimi

    Mimi Senior Member

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    Hi Mary,

    I'm also a patient of Dr. Kaufman's and I'm pleased to hear he suggested Niagen to you. Dr. Kaufman is great and Niagen is great. But if you don't mind, I'd like to suggest that you don't take any coffee or caffeinated drinks while you are on Niagen. Niagen, like ginseng, activates the AMPK pathway. And coffee does, too. The problem is, coffee does so acutely (to use the word from this study) and for me it made me fly and then crash. Coffee is contraindicated when taking ginseng so I waited until I ran out of ginseng before I had some - but it was too soon after and I crashed hard. So now I'm learning about AMPK and also mTor. They seems to be the yang and yin of catabolic and anabolic pathways. You always need yin to balance yang, and incidentally, betaine, which activates mTOR, seemed to pull my out of my crash. But it could also have just been I had several days of rest...enjoy Niagen and remember to start low and go slow.
     
  10. Mimi

    Mimi Senior Member

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    Btw, I'm not taking mitoQ but rather ubiquinol (a cheaper form) PQQ (for making mitochondria) and NT Factors. It seems to be working out :)
     
  11. Mary

    Mary Senior Member

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    Oh my - something new to learn about! :confused:

    Actually, thanks, Mimi - I do appreciate the information. :) I know nothing about the AMPK pathway and mTor is new too - but looks like I should learn. My coffee is the one thing I look forward .....:whistle:

    I do take betaine HCL with meals, it's helped my digestion a lot. Maybe it's helping other things as well?

    I am already taking a form of coQ10 (I forget which one right now). I did try PQQ and NT factors, and neither one did anything for me. But I don't think CoQ10 is a problem for me, it's one of the few things that was within the normal range (albeit on the low side), but I'm going to try the MitoQ for a month, I'm sure I should see by then if it's going to help.
     
  12. Mimi

    Mimi Senior Member

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    Cool that you've had that tested! And I'm glad you could get MitoQ at least for a trial.

    The other things I took to help me out of that crash (should you ever need them) were B complex plus extra B6 and B12. Then this morning I had spinach, asparagus, mushrooms and beets in a stir fry - all top betaine veggies which I just Happened to have on hand. Then I had my usual Chinese yin tonics - royal jelly, he shou wu, shisandra, goji berries. I also have rhemannia but forgot this morning. Rhodiola, ashwaganda, PQQ, ubiquinol. Organic lithium - another clock regulator like NAD+. And I take a few antioxidants like curcumin and glutathione. Curcumin activates AMPK. Finally, agmatine with ribose and inositol for sweeteners. But I was already doing a lot better just on the Bs and betaines.

    Mimi
     
  13. aquariusgirl

    aquariusgirl Senior Member

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    hi, what brand of niagen is the best deal? tnx
     
  14. Mary

    Mary Senior Member

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    Wow - what a regimen. I take a ton of stuff too, although mostly different than you. But I do take B complex and extra B6 (P-5-P) and methylfolate and B12, and I recently started rhodiola which I think is helping my immune system.
    And I take lithum and Co-Q10 and much much more! It's crazy, but it all seems to help.

    I thought you were describing an omelet when you started off with spinach, asparagus and mushrooms - that would be a fabulous combination for an omelet! :)

    FWIW, branched chains amino acids have helped me recover more quickly from PEM crashes - they've cut my recovery time about in half, I've been taking them since last November. I take the recommended dose on the bottle in divided doses on an empty stomach in the morning.
     
  15. Mary

    Mary Senior Member

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    I don't know, I haven't tried it yet, but will tag @Mimi here and maybe she can answer you -
     
  16. Mimi

    Mimi Senior Member

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    Hi, I bought it on Amazon and the best value was for the Live Cell Research brand - 250 mg caps x 30 count for $44. I am taking half a cap and am pretty happy with that. Under the tongue, grainy sweet and slightly bitter, not too bad. I'm sure you could always put it in juice. :)
     
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  17. Mimi

    Mimi Senior Member

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    Yum to the omelet idea! Soon!

    Thanks for the branched chain amino acids idea. I love finding out what works. I bought leucine recently and it tests exceedingly weak. But perhaps in combination? I have a BCA bottle around; I will test it.

    We are witches, mad scientists and innovators. We are people who want to get well with a passion. That's what I love about this forum. The adventure of healing...shared.
     
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  18. Violeta

    Violeta Senior Member

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    Just found this about EBNA,
    "Epstein-Barr nuclear antigen 2 (EBNA2), one of the six viral nuclear proteins expressed in latently infected B lymphocytes, is essential to the immortalization of B cells by Epstein-Barr virus (EBV)."

    Is there a way to do a B cell count?
     
  19. Mary

    Mary Senior Member

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    Violeta - there's an EBNA1 and EBNA2, so I don't know which one was tested. And I don't know what means, "immortalization of B cells" - can you explain?

    Why do you think it would be good to do a B cell count - what would it indicate?

    So re a B cell count - I don't know if it's necessary, may be depending on which EBNA was tested, 1 or 2? This is all beyond my current state of knowledge o_O
     
  20. Violeta

    Violeta Senior Member

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    It means that the virus has a way of making the infected B cells not die. So I was wondering if one would have a very high B cell count, and if that could be used as a predictive marker. But I looked at the selfhacked blog about EBV and it looks as though the B cells congregate in an organ.
     

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