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Discussion in 'ME/CFS Doctors' started by Gingergrrl, Jun 27, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My guess is that these SNPs are part of predisposition as, when you are not getting sufficient nutrients (mainly 5 MTHF and active B12) to maintain a good level of methylation, methylation will drop, reduced glutathione levels will drop, and methylation affects many, many systems in the body, as does glutathione.

    And, some pathogens deplete glutathione so that makes the situation worse. Someone more knowledgeable can probably add to this,

    Sushi
     
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  2. Sinclair

    Sinclair

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    @Gingergrrl43 Thanks for sharing and for updating this interesting thread! Take care. Sinclair.
     
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  3. SOC

    SOC Senior Member

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    Several of the infections many of us have can infect the heart and might cause some heart irregularities. That doesn't mean we're all going to get heart attacks, have permanent heart damage, or drop dead from cardiac issues in the near future. ;) The important thing is to clear up those infections, which is in your treatment plan. Naturally your doctor will want to keep an eye on your cardiac situation just in case a bad situation develops. Keeping an eye out doesn't mean he feels you have a serious cardiac problem right now.

    The level of antibodies is not a measure of how seriously your heart might be infected. Your infections could be in other parts of your body. Nor is the level of antibodies a direct measure of level of infection. It's a measure of the number of antibodies. If your body goes crazy making antibodies, you could have a high antibody titre and NO active infection. If your body isn't good at producing antibodies, you could have low titres, but a massive infection. Indirect measures are not good indicators, but they're the best we've got at the moment, so we make do. So don't take them TOO seriously.

    FWIW, daughter and I both have had active infections with HHV6 (much more likely to establish cardiac infections than EBV, iirc), EBV, Parvo and others for years. Our doctors watch to make sure we don't develop serious cardiac problems, but they're not expecting any major permanent cardiac damage. We've both done CPET testing with the approval of cardiologists and ME/CFS specialists. That isn't to say you can't have a major cardiac problem, especially if you leave the infections untreated, but it's unlikely. Your doctors are watching carefully. They'll see if something starts to go wrong.

    You seem to be worrying an awful lot. :( Maybe this would be a good time to look into an anti-anxiety agent until you get used to all this information and are not so overwhelmed by it?

    Remember, your lab results are not any worse than those of many people here, and better than some. It's startling at first to see everything that's wrong, but you know from reading here at PR that people survive -- and improve -- with all the conditions you're dealing with. Try to keep in mind that it's uphill from here.:hug:
     
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  4. mellster

    mellster Marco

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    I don't see anything standing out from the blood results except for EBV and NK function, which often seem to go hand in hand. If you had chickenpox, you have VZV, everybody has HSV1. I'd be interested in the CPN retests as this can cause issues with breathing, if it's positive you could take NAC as a supplement, and for the EBV larrea seems very potent (presumably more potent than antivirals), plus there is also 2LEBV, gen-eden vir and cordyceps (I have taken all of those). For the NK cell you could take IP6 and AHCC up to tolerance level (AHCC at least 3-5g per day), I'd recommend graviola and cordyceps as daily supplements as well, plus an immune mushroom blend (chaga, cordyceps, agaricus blazei). I am not sure what it is with the EBV - opportunistic bystander or causator or both - but that was the only screaming high value back then in my case. As always and although I am skeptical of antivirals unless you have countless through-the-roof infections, your doctor should know best. so talk to the before doing anything :) Glad you found the OMI.
     
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  5. SOC

    SOC Senior Member

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    "Everybody" has EBV, HHV6, and CMV, too. These are all permanent infections most people get in childhood and keep latent from then on. The question is whether someone's immune system is not keeping those infections under control. In many PWME that is the case and we have reactivations of these very common infections. @Gingergrrl43 has indications of active VZV, EBV, and HSV1, which is NOT normal in the healthy population.
     
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  6. mellster

    mellster Marco

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    That's not accurate I think. CMV is very rare compared to EBV, so is HHV-6. Active VZV usually manifests in shingles or shingles-like symptoms and there is not a lot of info on other chronic side-effects of VZV (aside from shingles) that I have found digging through the research, but I agree that high IGM may warrant a closer look - esp. if specific symptoms related to VZV are present. High/active HSV1 is normal in (even extended) periods of stress or sickness even in healthy people, they can get sores and other symptoms and they would have high readings as well. At least those high IgG without a paired high IgM cannot be used alone to determine infection/reactivation and should be retested after a while before coming to conclusions (IMO).
     
  7. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @SOC thanks for your feedback and I wanted to explain why I am anxious re: the heart stuff. It actually wasn't b/c of the titers or the results and I was "relieved" in some ways that the only super high one was EBV.

    The anxiety is from my symptoms itself and in the past 1-2 months I have had the worst cardiac and shortness of breath symptoms in my life. I had finally convinced myself it was all due to autonomic causes from the CFS and then Dr. K said it might not be and that he wanted to speak to my cardiologist re: testing me for angina.

    This is what scared me b/c the level to which I have shortness of breath and pressure in my chest with ANY exertion matches what I read re: angina and I don't want to have this problem on top of everything else. I cannot walk a few feet without getting really out of breath and it is debilitating to me and very frustrating.

    Then when he said about doing the exercise test without the beta blocker I didn't know how this would be possible b/c without the beta blocker when I just stand up my heart rate was in the 150's.

    I am grateful how thorough he is and want to get to the bottom of it, it is just a scary thing to live with b/c I am so impaired. I just find it hard to believe that I have a separate heart issue at 43 years old when my heart was perfect prior to mono and EBV.

    He then said he wanted to run two more Parvo tests since that can cause heart problems so I got confused if he thought I had angina vs. Parvo affecting my heart vs. this really is autonomic stuff that will improve with the anti viral?

    It all got a little bit overwhelming to try to sort out and take in!
     
    Last edited: Jul 29, 2014
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  8. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @mellster I also wanted to clarify that I have never had shingles or any outward signs of a herpes virus and everything started for me with severe mono in 2012 from EBV.

    Six months after mono I developed tachycardia up to 170-180 bpm, POTS, OI, and now shortness of breath that was so bad last month that my husband and parents made me go to the ER ( which was useless.)

    I am hoping the chronic viral reactivation of EBV and low NK cells are causing my cardiac and autonomic stuff as then the anti viral can help me. I already take beta blocker and Florinef and failed the saline IV due to my terrible veins so I got scared of all the what if scenarios.
     
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think you can start to get used to a new "reality." :) You no longer have to sort this out yourself--you have an excellent doctor to take the helm. For me, this was a great relief. You do need to "take it in," but you can do that at your own speed. Dr. K will discuss testing with your cardiologist and, between them they should be able to come up with a good and safe plan.

    Sushi
     
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  10. SOC

    SOC Senior Member

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    Nope, you are inaccurate.
    HHV6 Foundation
    CDC
    Age-specific prevalence of Epstein-Barr virus infection among individuals aged 6-19 years in the United States and factors affecting its acquisition.

    So HHV6 is much more common than EBV, and CMV has about the same prevalence as EBV. If you consider worldwide, greater than 90% of people are infected with CMV, so from that perspective CMV is probably more common than EBV. So no, HHV6 and CMV are NOT rare compared to EBV.

    Frankly, I think Dr Kaufman knows a lot more about these infections and how they affect patients with ME than you do. How do you propose to determine an infection/reactivation of a herpesviral infection? IgM and IgG are the best we have right now, even if they aren't ideal. Intelligent doctors like Dr Kaufman use their clinical knowledge along with titres to assess reactivations -- they don't dismiss high IgG out of hand. They also know that a high IgM occurs in a primary infection, but not in a reactivation, so you wouldn't expect to see a positive IgM in a reactivation. Retesting is not going to change that. You are giving advice based on old and/or incomplete information.
     
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  11. mellster

    mellster Marco

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    Ok I stand corrected about the initial infection (CMV is quoted anywhere from 40%-100%), but the point is that high/significant serum positivity for antibodies long after infection (antibodies and PCR) seems to be more common for EBV. And if I read correctly both CMV and HHV6 had been negative for gingergrl, so they are not for debate in her case. I maintain my stance on the IGG, which is by the way the stance of most MDs. That doesn't mean that they are right when they are saying that there are no reactivations, but it also doesn't automatically mean that you do have a reactivation with high IGG because it is hardly distinguishable from immunity, At least for EBV I think there are more elaborate tests with a more complex matrix. WRT to the retesting I agree with you on the IGM, but I was more leaning towards looking at the IGG after 3/6/12 months, and if it goes down that could likely point to a fading immune response/immunity vs chronic reactivation. In any case, yes Dr. Kaufman is the expert here, I thought I mentioned that before.
     
  12. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @ SOC and @Sushi Thank you for all your reassurance and none of my anxiety has to do with doubting Dr. K and it is really due to my own frustration with my level of impairment.

    For example on the way home we tried to stop at a compounding pharmacy to get my Vit B 12 shots but I had so much trouble walking, breathing, and standing in line and the music was so loud that I literally could not comprehend what was going on and we had to leave.

    Prior to mono/EBV I was a hospital social worker and could multi-task five different crises at the same time with minimal effort so sometimes I feel like the level I have fallen is pathetic.

    On my list of diagnoses Dr. K had typed "infectious mononucleosis" "common variable immunodeficiency" along with the stuff I knew like orthostatic intolerance, Hashimoto's Disease, etc. So I guess high IgM and early antigen for EBV equal reactivation of mono?
     
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  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I am starting to feel uncomfortable with people disagreeing with my testing or Dr. K and almost sorry I posted so much detail in this thread. He is not treating me based on IgG results and he ran five different tests for EBV and Mono and is treating me for the high IgM and my current level of symptoms and impairment. Maybe if people want to debate statistics of different viruses or the validity of the antibodies, it can be split into another thread? Dr. K was amazing and his skill exceeded anyone I have ever seen so I think I am going to stop discussing this here for now if that is okay.
     
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  14. mellster

    mellster Marco

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    Sorry, gingergrrl, that's not what I wanted to say/cause. I actually was suggesting to circle in on EBV/mono as this seemed the most prevalent/significant finding and was similar to my results back then. Also, I just wanted to point out some herbs/mushrooms that helped with the same. I'm sure you're in very good hands, keep reporting the progress and good luck! No more other debates on this thread ;)
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    chickenpox/shingles can also be internal and effect internal organs and nerves, not just outward symptoms of rashes and blisters. As with shingles, an ongoing issue is post herpetic neuralgia (PHN) which can last for years. So i dont think this virus is something that is benign and clears up within a few months. If one is immunocompromised im guess these isues can be long lasting. They could also cause a hit and run type effect damaging nerves and causing ongoing issues. So its worth wild i think to investigate this virus further. It one of those viruses that isnt spoken about much but i think its definately a common initiating infection, it played a big part in my situation.

    Autopsy's of ME patients have shown shingles type lesions within the nervous system. Im guessing these types of lesions can occur from any of the herpes viruses.
     
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  16. SOC

    SOC Senior Member

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    I understand where you are coming from. I used to be a research engineer. I had incredible focus and tons of energy. I was the person who never sat down, was always on the go. Then ME hit. At my worst, I couldn't read a book because I couldn't remember a single paragraph after I'd read it. I was stuck in bed for months. Now that I'm a lot better, I tutor math and science for elementary and high school students. That's a valuable job, but it's not engineering. And I loved engineering. :cry:

    My house used to be organized and spotless. Now it embarrasses me to have people visit, but I'm not well enough to keep it up the way it needs to be. I can't walk much distance at all, so I can't do my own shopping or general errands. Of course, I couldn't drive for a long time, so it hardly mattered that I couldn't walk around a store. Most of us have "fallen" a long way because of this illness, so most of us can empathize. :hug: I assure you, however, that life is happier if you focus on what you can do and how much progress you've made with the illness rather than being constantly frustrated with what you can't.

    As I understand it, most knowledgeable ME/CFS clinicians would agree that high IgM and early antigen along with the appropriate symptoms indicates an active infection, whether primary or reactivation, I don't know.. In fact, I think most doctors of any sort would agree.
     
    Last edited: Jul 30, 2014
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  17. xchocoholic

    xchocoholic Senior Member

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    Easier said than done. Curious minds want to understand everything that's happening. Me/cfs makes this much more difficult.

    I see anxiety as a normal feeling when faced with an unknown future. I look at it as a transitional phase that will subside once I get accustomed to my new reality. Worrying about having anxiety on top of my new reality never helped.

    I once had a nurse in the hospital try to convince me to take anti anxiety meds after my doctor told that I'd just had a heart attack.
    Somehow I had the sense to tell her that my reaction was the acceptable emotional reaction to what I was told. Patients asking questions seems to make medical personnel anxious.

    The doctor later retracted this statement but I don't know if I did or not. My docs have underplayed my symptoms for years.

    Hang in there @Gingergrrl43. It sounds like you're in good hands with all your doctors.

    Tc .. x
     
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  18. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Thanks to everyone for your responses and I am too tired to do individual responses right now. I increased the Florinef as my Dr suggested but it gave me a severe headache/pressure in my head (which is not a common symptom for me) and has lasted close to 24 hours and kept me awake. This has happened every time I have tried to increase Florinef and I think my body just cannot tolerate the normal dose that others can.

    The other meds (Famvir, Vit B-12 shots, Epicor, 5-MTHF, etc) I need to either get at the pharmacy or compounding pharmacy or order on-line which will take me a few days. I took extensive notes at the appt but my mind is not able to sort through all of them right now. I know people were trying to re-assure me that it is just anxiety or to trust my doctor but I have to explain that I whole-heartedly do trust this doctor and that is not the issue. I do feel anxious with all that I need to sort out when I am so impaired right now but I think that is a normal response (I think @xchocoholic pointed that out and I really appreciated it.)

    I am praying the anti-viral will get all the cardiac/autonomic stuff under control b/c then I could return to at least a level of functioning where I can stand up and walk around without getting out of breath as if I had run up several flights of stairs. I know people said that things can wait but I need to coordinate my new Dr talking to my cardiologist, and I need to work on my disability and switching to a new insurance or I will have no income or insurance (so some of these things really cannot wait.) I know everyone is in the same boat as me and I am not unique, I just feel a lot of stress and that I do need to find a way to get some of these things done while being so ill.

    Lastly, someone asked about the EBV tests and I realized there were actually six, not five. The "whole blood/serum" test for EBV was the negative one and Dr. K said he did not expect to find EBV in this test as it is notorious for hiding out in the tissues vs. blood. However the other tests, IgG, IgM, early antigen, EBV nuclear antigen (EBNA), and EBV viral capsid antigen were all really high. From these tests, he said I had a viral re-activation but which test specifically tells which data, I am unclear myself.

    I am not sure how much the positive HSV1 and VZV play a role and the positive IgM for Clam. Pneumonia was suspicious to him (possibly a lab error?) so he re-ran it. Also, the missing Parvo test (if I am reading correctly) the IgM was negative and the IgG was missing from the lab so from my notes, he repeated the Parvo tests and added a Parvo PCR test b/c of my cardiac symptoms (but that he expected these to be negative.) If the C. Pneumonia is positive, then this could be an additional antibiotic treatment, and I guess I find that out later. Not sure why he added HHV-7 or what this could show?

    I decided to continue giving details in this thread b/c my hope is that it will help someone else down the line and I hope that I answered everyone's questions! I really do appreciate all the feedback, and if I was feeling even slightly better, my brain could take it all in without becoming so overwhelmed!
     
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  19. SDSue

    SDSue Southeast

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    I hear you. I, too, was accustomed to a high-paced, multi-tasking, never-sit-still lifestyle. It's quite a blow when we can no longer stand in line and converse at the same time. That alone caused me great anxiety, as my body became unpredictable and unreliable.

    The level we fall to IS pathetic. And don't get me started on the even bigger issue of our symptoms not being believed lol.

    Hang in there - help is on the way :)
     
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  20. Kati

    Kati Patient in training

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    @Gingergrrl43 thank you for sharing your experience.

    OMI is a reputable and trustable place to get health care. Getting validation is a very good and a beautiful thing

    I am wishing you the best of luck with treatments and your disability insurance.

    It sounds like you have a lot on your plate right now, and I totally understand how it can be overwhelming since I've been there. Hopefully treatments will provide much relief over time.

    Best, Kati
     

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