Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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Finally! A good local doc and IVIG

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by SOC, May 18, 2015.

  1. SOC

    SOC Senior Member

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    Today I saw the kind of doctor (a hematologist/oncologist) every doctor should be -- a true professional. He looked at my labs, thought about the big picture, asked intelligent questions, listened to my answers, decided to do some reading about ME and call my specialist to find out more about it. He didn't try to sort out my problem in 8 minutes, but spent an hour going over my history and medical records.

    When he asked about the Valcyte and Valtrex, I told him (with some trepidation) that I had trouble keeping EBV and HHV6 suppressed. Instead of giving me all that irrelevant crap about healthy people and herpesviruses -- everybody has them so they don't mean anything, healthy people can have high titres so they're meaningless -- he said, "Well, I'm not surprised given the state of your immune system." :jaw-drop::wide-eyed::thumbsup: Thank you! Finally someone who can think logically and look at reality!

    It was like seeing an ME/CFS specialist. He listened to what I was saying. He believed what I told him, and he understood that it made sense because it fit with his professional experience. Not a hint of that "It's all in your imagination" crap. Like my ME/CFS specialist, he was telling me some of the symptoms I was likely to be experiencing (I was). It was that wonderful, "Hey, s/he gets it!" feeling I had the first time I saw Dr Rey.

    The best news is that while he can't explain WHY my immunoglobulins and lymphocytes are dropping (he seems to think it might be genetic), he doesn't think it's related to a malignancy based on other labs and clinical presentation. :balloons::thumbsup::balloons:

    The other good news is that he says I'm an excellent candidate for IVIG and wants me to have the first infusion in a couple of days. He thinks I'll feel much better with IVIG. This may be a case of the man with a hammer thinks everything's a nail, and without knowledge of ME/CFS he may be overly optimistic about how much improvement I can get, but still, I think I'll feel better generally if I'm not catching everything under the sun and dealing with repeated herpesviral reactivations.

    He was also disgusted that my PCPs have been refusing me abx all these years. "Yes," he said, "People like me don't need abx to get over small infections. We're sick a few days and we recover. Abx use is for people like you. You get a small infection and are sick for weeks or months because your immune system can't set up an effective fight. You NEED the help of the abx. That's what they're for." He's putting in my record that I should get abx when I have an infection, and not be told to go home and wait it out anymore. Again, thank you! It's about time! Hopefully no more pneumonia for me. :D

    Now my only worry is that he'll do some reading about ME/CFS on the internet and decide I'm a hypochondriac after all. :rolleyes: I did give him the lovely table of recent research that... er... somebody.. :oops: made recently, so hopefully that will get him started in the right direction anyway. In any case, he's not going to change his opinion about the IVIG since it was based entirely on my labs which he felt more than justified the treatment.

    :trophy::bouquet::balloons: Hurray for all the good doctors out there -- the ones that understand what being a professional is all about, the ones that believe their profession is about caring for people and helping them improve their health. I can now list two of these true professionals on my healthcare team. :thumbsup:
     
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  2. leokitten

    leokitten Senior Member

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    Glad to hear @SOC. Just to throw out there have you been on a long cycle of Valcyte? That could be a reason your lymphocyte counts and IgG are falling.
     
  3. SOC

    SOC Senior Member

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    That appears not to be the case. My lymphocytes and immunoglobulins have been dropping continuously for years, even when I was off Valcyte. The rate of drop didn't change at all during the 2 years I was off Valcyte, or increase when I went back on. If Valcyte was the cause, there should have been a recovery of lymphocyte numbers during the time I was off and then a drop again when I went back on. That didn't happen, just a steady decline.

    That isn't to say the Valcyte might not cause cytopenia, just that it appears not to be the situation in my case. The hematologist did not feel Valcyte was the problem and wanted me to stay on it -- at least until we are more confident that my body with IVIG assistance can keep HHV6 better suppressed.
     
  4. leokitten

    leokitten Senior Member

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    If you possibly can try to get your doctor to give you higher doses of IVIG than normally prescribed for hypogammaglobunemia, at higher doses it supresses autoimmunity and we don't know exactly why.
     
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  5. snowathlete

    snowathlete

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    I dream of meeting a doctor like this. Really pleased for you.
     
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  6. SOC

    SOC Senior Member

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    I didn't know that. We'll see what he says. :) My first infusion is a 40% dose, then I get some labs in a couple weeks and if everything is okay I should get a full dose in another month. Whether he'll buy a higher dose given cost and supply limitations is another matter. We'll see a little later down the road.

    I'm not convinced I'm a PWME with autoimmune features. I'm not completely convinced I'm not, either. :p I just don't seem to have the same symptom set that those with clearer autoimmune presentations have. But we know so little right now that I'm not writing off any feasible theory.
     
  7. Oredogg

    Oredogg

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    @SOC So glad to hear about your positive experience. Heme/onc docs have been some of my favorite colleagues to work with. I wouldn't worry about him reading up on ME and changing his mind. He's seen your counts, has your history, is already recommending IVIG and antibiotic when needed, and seems competent enough to make his own, rational conclusions about the nature of the disease. So happy for you. ☺️
     
  8. Sushi

    Sushi Senior Member Albuquerque

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    @SOC This sounds so great--I am so happy for you! :thumbsup::):balloons:
     
    MEMum and SOC like this.
  9. SDSue

    SDSue Southeast

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    Simply ….. Wow! This is awesome news. Pretty soon, you’ll be on this thread reporting a cure and having people shoot you down as never having had ME ;).
     
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  10. L'engle

    L'engle moogle

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    Keep up the good news! :D
     
  11. SOC

    SOC Senior Member

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    :rofl::rofl::rofl: I would like nothing better! :D You won't hear me demanding to be allowed to have ME. ;) I'm sure all my PR friends would abandon me in my non-MEness.
     
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  12. SOC

    SOC Senior Member

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    Lessee.... daughter graduated with her master's degree in mechanical engineering yesterday. She wore a big blue ribbon around her wrist with SEID on it. She wanted to wear an ME/CFS/SEID awareness ribbon on her mortarboard, but they wouldn't let her.

    Despite being crammed in an un-air-conditioned gym with hundreds of people and no water to drink for hours, neither of us passed out. That was good news. ;)

    We have a wedding coming up in 2 months. I think that's good news, although I'll miss her dreadfully.
     
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  13. SOC

    SOC Senior Member

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    Oh dear, was that some kind of Freudian slip? I'm sure my PR friends would NOT abandon me! :p

    Ah, those ME Moments!
     
  14. SDSue

    SDSue Southeast

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    I won’t abandon you. I know the illness path you’ve traveled, and it’s been quite a ride. I sure hope this is the point at which you exit the roller coaster, tho.
     
  15. SOC

    SOC Senior Member

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    Me, too. I really don't have any expectation that IVIG will make much, if any, difference in PEM, though. Maybe if I had a clue what is at the root of PEM, I'd have more confidence in something "curing" it.

    I'll be happy to have less URIs and to be able to keep herpesviruses under better control. I don't know what it feels like not to feel sick, as in viral sick, anymore. Pretty good, I imagine. :D

    My semi-realistic dream for IVIG is that it will make a big difference in my cognitive dysfunction. I'd like to feel more like me again. I could deal better with PEM if I could engage in some more intellectual pursuits -- read, take classes, learn new things. Valcyte made a big difference, but I want more. I'm getting greedy. :p First I just wanted to be able to think straight -- to be able to carry on a coherent conversation for more than 5 minutes and to read more than a paragraph at a time. Now I want to be able to think well, and study, and read technical papers, and not be confused by instruction manuals.... okay, maybe that is asking too much. :lol:
     
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  16. Ruthie24

    Ruthie24 Senior Member

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    I will be curious to hear about your experience with the IVIG.

    I was just approved for sub-Q IG based on my labs. I am on the other end of the spectrum where I rarely get any illnesses that everyone else in the family gets but when I do....it really knocks me down for months. And even when I had pneuomonia, I never ran a fever so something is clearly going on with immune system-as well as autonomic stuff.

    I think my ME/CFS doc is hoping the SubQIG will work on the auto-immune aspect as well as helping me be able to wean off the antivirals I seem to be stuck on for now. He was saying I might not notice any real difference until the next time I try to wean off the AVs but he's hoping the infusions will help me be able to do that at some point.

    He says insurance companies don't like to pay for the higher doses required for the autoimmune benefits but he is adjusting dosages as best he can to try to get a close approximation of what is needed.
     
  17. SOC

    SOC Senior Member

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    It sure would be nice to get off AVS, and stay off AVs. I hope I notice more than the ability to stay off AVs, but even that would be good.

    I still don't get the whole autoimmune thing, so I'll be interested to hear how the SCIG works for you. Keep us posted.

    I never run a fever, either. Never have, even long before ME.
     
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  18. Ruthie24

    Ruthie24 Senior Member

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    I ran fevers ALL the time as a kid. Caught every thing that came around and missed a lot of school. But like you, never ran a fever for decades as an adult...long before ME/CFS. Makes me wonder if there were some problems already developing in the immune system that set up the ME/CFS later in life.

    My friend who does IVIG swears it helps so much more...migraines, energy, etc etc. She's also a POTS patient so I am hopeful that this will help us as well.
     
  19. SOC

    SOC Senior Member

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    I remember saying as early as my college years that my immune system didn't seem to be working like other peoples'. I won't be the least bit surprised to find that either my ME truly began decades before I think it did, or that there was something developing immunologically that eventually led to ME. Or not. :p I don't think anything will surprise me about ME anymore... except maybe that the BPS school is right and hundreds of thousands of intelligent, hard-working people suddenly went insane and voluntarily gave up interesting and productive lives in order to sit around sick and in pain for the rest of their lives.

    I sure hope so! Sigh... wouldn't that be wonderful?
     
    Last edited: May 19, 2015
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  20. Ruthie24

    Ruthie24 Senior Member

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    Ha ha ha.:lol: Yeah....don't think that's gonna happen any time soon. :rolleyes: Not only would we have to be insane, we'd have to be telepathic as well. At least in my case, I didn't start researching ME/CFS until I had a whole slew of symptoms and was trying to figure out the cause. Not like I was reading forums beforehand looking for something to emulate. So we'd have to know ahead of time which symptoms we were going to choose in order to develop an-impossible-to-diagnosis-and-treat disease. That's pretty talented of us. :p
     
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