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My Dr Kogelnik Blood Test Results

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Scavo86, Sep 11, 2012.

  1. Scavo86

    Scavo86 Senior Member

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    As some of you might know I went to see Dr K at the back end of last month. I attach my bloodwork from that appointment, I am due a Skype/phone follow up with him shortly. I am shocked by my NK cell result, but I guess nothing should surprise me with this illness.

    Attached Files:

  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interesting. What treatments are you on for these?

    thanks for sharing
  3. Scavo86

    Scavo86 Senior Member

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    None as yet, but what this space, Famvir was mooted during the appointment. I want to do something rather than nothing though as I am not in great shape :(
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yep, glad you saw Dr. Kogelnik, cause there are certainly things there that would explain
    Looks like you had a recent exposure to C. Pneumonia--something many of us are carrying.

    Best wishes with treatment.
    Sushi
  5. Scavo86

    Scavo86 Senior Member

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    Yeah, I am not so sure about that C. Pneumonia because I thought I had been relatively better of late. I will ask Dr K about it.
  6. Wally

    Wally Senior Member

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    Scavo86,

    I don't see any blood test results for EBV. Were these tests run? Has Famciclivor been ruled out as a possible antiviral treatment option for you? If yes, do you know the reason why?

    Wally
  7. Scavo86

    Scavo86 Senior Member

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    Wally the EBV and CMV tests had already been done recently here in the UK so Dr K felt there was no need to repeat them for the sake of it, hence why they didn't appear on that list, I appreciate it looked a bit weird. I will be discussing Famvir on Friday with Dr K as a potential first line treatment, as I am yet to take anything for me ME/CFS.
  8. roxie60

    roxie60 Senior Member

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    Was this a specific lab test that included all these or is this a plasma/blood test your Dr requested (there are a lot of different things on that test result is why I'm asking, did this come as part of a Lab offering or unique individual tests requested by your dr?)
  9. Scavo86

    Scavo86 Senior Member

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    roxie60 It was a load of different tests, from five labs actually, but the paperwork I received back was all consolidated. It wasn't a discreet panel as such, just the initial tests that the Dr favours minus the EBV/CMV that I had done in the UK before I headed to San Fran. Hope that answers the questions.
  10. roxie60

    roxie60 Senior Member

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    yes thank you
  11. Wally

    Wally Senior Member

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    Scavo86,

    Sorry for not remembering that you had already been tested for EBV and CMV. You definitely have a number of viruses that have showed up to your immune system party. I would assume that the level of viral activity in your body as well as your low NK Cell Function test welcomed you immediately into our little viral ME/CFS patient club. Probably not a club that you really wanted to join, but at least you know that you fit squarely in the middle of our little band of immune fighting warriors. :ninja:

    Has Dr. K. laid out in detail what treatment options may be available to you based upon all of these blood test results? I know if you qualify for a trial of Rituxan that it is going to be a difficult decision to make, but if you need more time to wait and see how the pilot studies progress perhaps he can suggest some of the antiviral options that you can try first to see if you get any relief from the worst of your symptoms?

    Wally
  12. Scavo86

    Scavo86 Senior Member

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    Wally yeah, looks like I am slap bang in the viral camp. In a way it's good to know that I am not just going crazy and that I am not over-run with bacteria, despite a little bit of bacterial activity which is to be expected I guess. I suppose cause there are anti-virals out there I am somewhat comforted by the fact that we can at least give them a go and assess results. It must be a nightmare to have a gradual onset or a situation where you can't even assess what the major problem is with one's ME/CFS.

    I am having a Skype chat with Dr K on Friday and from the initial appointment I suspect that we might kick off trying some Famvir and then take it from there. Rituxan is a candidate as well but I think I might hold off on that for the next 12 months or so before seeing how it all pans out. In a way exciting times but I am still shocked at how poor my NK cells are, we were guessing they might be at 25 but I wonder how on earth I function with results that poor, I guess some other part of our bodies are compensating.
  13. clive powney

    clive powney Senior Member

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    Great to see that you at least have a direction!
    Where in the UK did you get the tests for EBV and CMV ???
  14. Scavo86

    Scavo86 Senior Member

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    Just from my NHS immunologist.
  15. Wally

    Wally Senior Member

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    Scavo86,

    Not sure how you prepare for your appointments with Dr. K., but I have found that outlining my questions in writing helps me get the most out of each appointment. I also have someone with me to be my second pair of ears to help process the information that is received and to be my note taker.

    If you do end up taking Famciclivor, I would be happy to talk to you further about my experience with taking this drug at a higher dosing level. I know each of us is unique in how we will respond or not respond to a particular drug, but it may help to have someone to talk to who is walking on a similar path.

    Wishing you the best.

    Wally
    ukxmrv likes this.
  16. clive powney

    clive powney Senior Member

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    This answer just shows how poorly treated and how inconsistent the NHS system really is.
    There has never even been a suggestion that I could be referred to an immunologist (how did you manage to get these tests out of your GP?) - I had to beg to see our regional 'consultant' (ha ha - sorry but I should have put regional 'asshole') at the FATIGUE clinic at George Eliot Nuneaton - oh my god WHAT AN ABSOLUTE WASTE OF TIME THAT WAS - I might as well have gone to see my local newsagent
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  17. clive powney

    clive powney Senior Member

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    How have your experiences gone with Dr K?
  18. Scavo86

    Scavo86 Senior Member

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    clive powney to say a quick bit about Dr K, I have only seen him in person once, with my Skype chat occurring with him at 10.30pm tomorrow UK time. He's obviously a really intelligent guy and I am fortunate in that he is the one/only ME/CFS specialist I have consulted with, so I have not wasted thousands of £££$$$ with other people. He can't provide the big answers yet, as no-one really can, but he is at the cutting edge and I think he is willing to be as aggressive or conservative as the patient wants to be in treatment, with the Rituxan option being there for those who fit the profile for it. It's just great that he gave me options and so I have a vague idea of what I am going to try for the next 12 months or so. I will however know more tomorrow once he feedsback on my bloods.

    Vis-a-vis the NHS thing, the blood tests were performed by the immunologist and not my GP. I think it's worth bearing in mind that as a result of the NHS 'Choose & Book' system it is, in theory at least, the patients choice as to what specialist they see and where this is. In practice what this means is that you have to have a decent enough relationship with your GP who ultimately sets you up on the system and provides the initial referral. As with many facets of this illness, the onus sadly falls on us as patients, to utilise the system to our own ends. If it's any consolation I don't think anyone anywhere in the UK that you could potentially see through 'Choose & Book' is actually going to prove overly worthwhile in treating this illness as hands are tied by what can prescribed as a result of NICE guidelines anyway. Roll on the days when we can have Ampligen etc prescribed on the NHS. Let's not hold our breath waiting though, haha.
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  19. richvank

    richvank Senior Member

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    Hi, Scavo86.

    For what it's worth, I think that there is good evidence now that points to glutathione depletion in the NK cells as the direct cause of their low cytotoxic activity. With your load of viral infections, I think that glutathione depletion would be expected. It isn't clear which comes first, glutathione depletion from other causes causing dysfunction of cell-mediated immunity and the rise of viral infections, or viral infections depleting glutathione as a result of the inflammation produced in combatting them. In any case, the two seem to go hand in hand.

    The way glutathione depletion in the NK cells lowers their cytotoxic activity is by inhibiting the production of perforin, which the NK cells normally use to punch holes in virally-infected cells, in order to be able to inject granzymes, which are "poison pills" that lead to the death of these cells.

    It has been found by the PHANU group in Australia that the gene expression of perforin is elevated in these cells, as evidenced by the higher than normal level of messenger RNA for perforin. However, the actual amount of perforin molecules produced is lower than normal. This indicates that there is a problem in translating the RNA into the protein molecules.

    The perforin molecule normally has 20 cysteine residues, which is a high number compared to most proteins. Normally, glutathione keeps cysteine molecules in their unoxidized state within the cytosol of the NK cells. This is necessary to enable the cells to assemble a proper amino acid chain for making perforin. When glutathione is depleted, cysteine molecules become oxidized to cystine by forming double bonds with each other. This inhibits the formation of a normal amino acid chain, and that explains the low production of perforin, even though the NK cells are trying hard to produce it by elevating its gene expression.

    In the past, the only way I have found to elevate glutathione on a permanent basis in ME/CFS is by using methylation treatment.

    In principle, if it were possible to remove the sources of oxidative stress so that glutathione would be allowed to come up on its own, this should overcome the B12 functional deficiency, and if there is enough folate available, the partial methylation cycle block should also be lifted. I suspect that this is what is going on in the cases of the successful recoveries using Rituximab. I suspect that knocking down the B cells also knocks down inflammation, and with it, oxidative stress.

    I suspect that GcMAF also does this to some degree, and I suspect that the antivirals do this as well. Anything that can take some of the load off glutathione will help it to rise.

    Anyway, just for what it is worth, I think that all of this can be fitted together.

    I wish you the best of success in your treatment from Dr. Kogelnik.

    Best regards,

    Rich
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  20. Scavo86

    Scavo86 Senior Member

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    Thanks for your input Rich, I will have to read the first paragraphs of your post a few times to get my head around them, but I have a thirst for knowledge and I find all of this immunology stuff fascinating.

    I completely subscribe to your point about doing one's best to lift any load that you can from the immune system. I think I am going to give Famvir a shot but I am not going to leave any stone unturned in my journey towards improved health. Dr K appears to be a good match for my own personality and so I am happy to be under his care.

    Exciting times for ME/CFS research and if there was ever a good time to be stricken with this awful illness then now is undoubtedly it.
    ukxmrv and merylg like this.

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