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Can You Come for a Visit? My ME/CFS Says No
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Discussion in 'Immunological' started by Lee Ann, Dec 28, 2010.

  1. Lee Ann

    Lee Ann

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    Tennessee
    Hello Everyone,

    I'm new here and this is my first post. This might not be the right thread so forgive my newness. After many doctors and a gazillion tests, I think I have narrowed down the root cause to my illness. I was told I have reactive EBV. It seems so far-fetched that a virus I had never heard of could wreck havoc on my once healthy body. This has been a living hell. I'm sure you all know the depths of my nightmare. I am starting on Dr Lerner's protocol at the first of the year. I have been tested for co-infections but the EBV seems to be the only culprit in my physical demise.
    I would like to ask a question.... do most of you have EBV, HHV6 or is your illness a mystery? I really do try and stay positive because that is how I have always been. Boy oh boy, how I have been tested. Any feedback would be helpful. Thanks, Lee Ann
     
  2. Esther12

    Esther12 Senior Member

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    Hi Lee Ann.

    I got ill following glandular fever, and it seems EBV can cause trouble for some people, but I'm a bit dubious about how much we really know about it's role in chronic illness. It's often been mentioned with CFS... it now seems to be getting mentioned with MS...

    I'm afraid I don't have much advice, other than to be a bit hesitant about any of the explanations for CFS which are floating about. No-one really knows, and I'm not sure it's worth spending too much money on anything in particular. Try to lead as healthy a life as you can manage eg: fruit and veg, try to keep what activity you do regular (rather than pushing yourself on some days and resting on others), make time to relax and play about... I'm not sure that anyone really knows though. Good luck though.
     
  3. WillowJ

    WillowJ Senior Member

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    WA, USA
    Dear Lee Ann,

    You have done better than me. I am still trying to get someone to test me for things like EBV and things related to ME/CFS like NK cell function. Since so many of us are denied testing, our illnesses are mysteries. You can't figure anything out without tests.

    I'm glad you have found doctors willing to test you. All the best on your treatment. Please let us know how it goes. :)

    Willow
     
  4. Lee Ann

    Lee Ann

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    Hello Esther,
    Thanks for your reply. Ya know, I realize many of us think we will never have a chronic illness but to have a illness that neither the medical community nor most people recognize or understand is what's most disturbing. If supposedly a million people are affected by CFS, where are they? Where are the million voices? I"m new to all of this so I suppose I'm in the anger stage. Thanks again
     
  5. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    Hi Lee Ann,

    There are a lot of us on this forum that have chronically elevated EBV and HHV-6 titers. As well, there are some that in addition have CMV, Enterovirus and/or other co-infections. Some have all of these infections and there some that only have one. We also have some now that have tested positive for these at some point, but now are negative?

    The point is that you are in great company, as we all understand your anguish!!! This forum is second to no other forum! The knowledge, respect and support from the members (and administration) is amazing and I hope you will join us so that you can see for your benefit.

    I have high EBV IgG Early Antigen (EA) and Nuclear Antigen (NA or EBNA) with very high IgG Viral Capsid Antigen (VCA). My HHV-6 IgG is high as well and I have been tested twice for all of them except EBV VCA which I have been tested for 3 times. I was tested at approx. 6 months apart with less than 10% difference, except for last EBV VCA. It was taken about 3 months after starting Valcyte and it had increased about 20%?? Couldn't get a good explanation as to why, so it was decided that I should not take the Valcyte any longer.

    The presence of EBV, HHV-6 and other co-infections are considered as one of the different subsets of ME/CFS instead of a cause. At least that is how I have looked at it so far. If I can help you in anyway please let me know.

    Welcome again to Phoenix Rising
     
  6. eric_s

    eric_s Senior Member

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    Hi Lee Ann

    I've had EBV too, but i don't know if it caused/triggered my ME/CFS, because i did not get diagnosed for it at the time of infection, only later. And i've never been tested for reactivated viruses, they only looked for antibodies to EBV, as far as i know. But i think i will try to have some more detailed testing.

    I think you are totally right, how you feel. Before ME/CFS, i thought it's something that happened only in the past, that you are ill, go see a doctor and he can't tell you what is happening to you and can't help you.
    It's a good question where the million voices are. Part of the answer is that many are just too sick to easily make their voices heard and probably also many are not even diagnosed or misdiagnosed. Then there is a lack of organization, i believe. I think it's key to our progress to make those voices heard.
    Anger to some degree (as long as it doesn't hurt your own health and recovery) is right and necessary, because the current situation is not right, even though much better than before, with the XMRV finding and new developments. I think healthy anger fuels action.
     
  7. Lee Ann

    Lee Ann

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    Thank you all for your kind words. It seems the more I know about EBV or CFS, the more confused I become. It makes me wonder if it's just best to have the mindset of ignorance is bliss. It would be less expensive !!
     
  8. alice1

    alice1 Senior Member

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    hi lee ann and welcome to the board.
    i also have high ebv and hhv6 titers.
    there's an abundance of info regarding food,treatments,dr,you name it and it's probably here.
    best
    a.
     
  9. Lee Ann

    Lee Ann

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    Hi Alice
    Nice to meet you
     
  10. richvank

    richvank Senior Member

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    Hi, Lee Ann.

    Elevated titers to EBV, HHV-6, and/or CMV are very commonly found in CFS.

    For what it's worth, I'll offer an explanation in terms of the Glutathione Depletion--Methylation Cycle Block Hypothesis for the pathogenesis of CFS:

    In order for the immune system to successfully keep viruses in latency in the body, it's necessary for it to be able to deliver what's called a cell-mediated immune response. This is the type of response that involves T lymphocytes.

    Most people carry these viruses, but they stay in their latent state and don't cause symptoms, so long as the immune system is operating normally.

    The cell-mediated immune response is dysfunctional in CFS. This allows the viruses to become activated to some degree, though the body continues to fight them with other less effective immune responses. Among them is the RNase-L response, which typically remains activated in CFS, though normally it is meant to be temporary, until the cell-mediated response is able to come up and successfully put down the viruses. In CFS, there is sort of an ongoing guerrilla war between the dysfunctional immune system and the viruses.

    The cause of the cell-mediated immune dysfunction, according to the GD-MCB hypothesis, is that there is a combination of glutathione depletion, a partial methylation cycle block, and draining of folate metabolites from the cells, all three connected together in a vicious cycle mechanism that makes CFS a chronic disorder.

    It is known that glutathione depletion is particularly detrimental to the function of the T cells. It is also known that in the cell-mediated immune response, the T cells must proliferate to form many more cells. This requires the synthesis of new DNA and RNA in a short time period. These in turn require reactions involving folates. Since folates have drained from the cells, the T cells are not able to proliferate rapidly, as they should. This combination makes the cell-mediated immune response dysfunctional, and that allows the continuing activity of viruses.

    According to the GD-MCB hypothesis, in order to restore normal control of the viruses, it is necessary to lift the partial methylation cycle block, so that the immune system can begin functioning normally again. Treatment for doing this is described at www.cfsresearch.org (Click on CFS/M.E. and then on my name.)

    Some people have been able to return to health by taking antivirals. These suppress the viruses, and in some cases, this is enough to allow the immune system to take control. However, this can take long treatment times, and is not always successful.

    I suggest that it is wise to test for a partial methylation cycle block, and to treat it if present. It may be necessary to treat with antivirals, and also treat to lift the partial methylation cycle block.

    I suggest testing to see if a partial methylation cycle block is present, using the methylation pathways panel. Contact information and interpretive information are below.

    I hope this is helpful.

    Best regards,

    Rich


    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinician’s letterhead.


    Available from:

    Health Diagnostics and Research Institute
    540 Bordentown Avenue, Suite 4930
    South Amboy, NJ 08879
    USA
    Phone: (732) 721-1234
    Fax: (732) 525-3288

    Lab Director: Elizabeth Valentine, M.D.

    Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone.



    Interpretation of the Health Diagnostics and Research Institute
    Methylation Pathways Panel

    by
    Rich Van Konynenburg, Ph.D.


    Several people have asked for help in interpreting the results of
    their Health Diagnostics and Research Institute methylation pathway panels. Here are my suggestions for doing so. They are based on my study of the
    biochemistry involved, on my own experience with interpreting more
    than 120 of these panel results to date, and on discussion of some of
    the issues with Tapan Audhya, Ph.D., at the Health Diagnostics and Research Institute.

    The panel consists of measurement of two forms of glutathione
    (reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
    adenosylhomocysteine (SAH), and seven folic acid derivatives or
    vitamers.

    According to Dr. Audhya, the reference ranges for each of these
    metabolites was derived from measurements on at least 120 healthy
    male and female volunteer medical students from ages 20 to 40, non-
    smoking, and with no known chronic diseases. The reference ranges
    extend to plus and minus two standard deviations from the mean of
    these measurements.

    Glutathione: This is a measurement of the concentration of the
    reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. From what I've seen, most people with chronic fatigue
    syndrome (PWCs) have values below the reference range. This means
    that they are suffering from glutathione depletion. As they undergo
    the simplified treatment approach to lift the methylation cycle
    block, this value usually rises into the normal range over a period
    of months. I believe that this is very important, because if
    glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
    that build up in the absence of sufficient glutathione to take them
    out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
    convert to methylcobalamin, which is what the methylation cycle needs
    in order to function normally. Also, many of the abnormalities and
    symptoms in CFS can be traced to glutathione depletion.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. In many (but not all) PWCs, it is elevated above the normal
    range, and this represents oxidative stress.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. Adenosine is a product of the reaction that converts
    SAH to homocysteine. In some PWCs it is high, in some it is low, and
    in some it is in the reference range. I don't yet understand what
    controls the adenosine level, and I suspect there is more than one
    factor involved. In most PWCs who started with abnormal values, the
    adenosine level appears to be moving into the reference range with
    methylation cycle treatment, but more data are needed.

    S-adenosymethionine (RBC) (SAM): This is a measure of the
    concentration of SAM in the red blood cells. Most PWCs have values
    below the reference range, and treatment raises the value. S-
    adenosylmethionine is the main supplier of methyl groups in the body,
    and many biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    in CFS, it appears to result from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS can be tied to lack of
    sufficient methyation capacity.

    S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
    concentration of SAH in the red blood cells. In CFS, its value
    ranges from below the reference range, to within the reference range,
    to above the reference range. Values appear to be converging toward
    the reference range with treatment. SAH is the product of reactions
    in which SAM donates methyl groups to other molecules.

    Sum of SAM and SAH: When the sum of SAM and SAH is below 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathione beta synthase (CBS)
    enzyme, though this may not be true in every case.

    Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity.

    5-CH3-THF: This is a measure of the concentration of 5-methyl
    tetrahydrofolate in the blood plasma. It is normally the most
    abundant form of folate in the blood plasma. It is the form that
    serves as a reactant for the enzyme methionine synthase, and is thus
    the most important form for the methylation cycle. Many PWCs have a
    low value, consistent with a partial block in the methylation cycle.
    The simplified treatment approach includes FolaPro, which is
    commercially produced 5-CH3-THF, so that when this treatment is used,
    this value rises in nearly every PWC. If the concentration of 5-CH3-
    THF is within the reference range, but either SAM or the ratio of SAM
    to SAH is below the reference values, it suggests that there is a
    partial methylation cycle block and that it is caused by
    unavailability of sufficient bioactive B12, rather than
    unavailability of sufficient folate. I have seen this frequently,
    and I think it demonstrates that the “hijacking” of B12 is the root
    cause of most cases of partial methylation cycle block. Usually
    glutathione is low in these cases, which is consistent with lack of
    protection for B12, as well as with toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
    This form of folate is involved in reactions to form purines, which
    form part of RNA and DNA as well as ATP.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma.
    Most but not all PWCs have a value on the low side. This form is not used
    directly as a substrate in one-carbon transfer reactions, but it can
    be converted into other forms of folate. It is one of the
    supplements in the simplified treatment approach, which helps to
    build up various other forms of folate.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. In PWCs it is lower than the mean normal value of 3.7
    nanomoles per liter in most but not all PWCs. This is the
    fundamental chemically reduced form of folate from which several
    other reduced folate forms are made. The supplement folic acid is
    converted into THF by two sequential reactions catalyzed by
    dihydrofolate reductase (DHFR). THF is also a product of the
    reaction of the methionine synthase enzyme, and it is a reactant in
    the reaction that converts formiminoglutamate (figlu) into
    glutamate. If figlu is high in the Genova Diagnostics Metabolic
    Analysis Profile, it indicates that THF is low.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. Low values suggest folic acid deficiency in the
    current diet. High values are sometimes associated with inability to
    convert folic acid into other forms of folate, such as because of
    polymorphisms in the DHFR enzyme. They may also be due to high
    supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic
    acid in the whole blood. See comments on 5-formyl-THF above. It
    usually tracks with the plasma 5-formyl-THF concentration.

    Folic acid (RBC): This is a measure of the concentration of folic
    acid in the red blood cells. The red blood cells import folic acid
    when they are initially being formed, but during most of their
    approximately four-month life, they do not normally import, export, or use
    it. They simply serve as reservoirs for it, giving it up when they
    are broken down. Many PWCs have low values. This can be
    caused by a low folic acid status in the diet over the previous few
    months, since the population of RBCs at any time has ages ranging
    from zero to about four months. However, in CFS it can also be
    caused by damage to the cell membranes, which allows folic acid to
    leak out of the cells. Dr. Audhya reports that treatment with omega-
    3 fatty acids can raise this value over time.
     
  11. Lee Ann

    Lee Ann

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    Hi Rich,
    Thanks for the valuable information. I had read this on another thread you had written and I actually called Health Diagnostics in NJ this morning. I was confused by the process, which isn't difficult to do, and the lady explained to me that my doctor can order a kit that will come directly to me and then take to my lab. But you are probably aware of this. So, my dilemma....Do I start on the Valtrex or what? I really need direction. Thank you Lee Ann
     
  12. lucy

    lucy Senior Member

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    Hi Lee Ann,
    I am too in the same boat of being diagnosed with reactivated (both Igg and Igm) EBV after presenting to my doctor having profound fatigue every morning after many hours of sleep. For me too, EBV and consequently monocyte count seemed to be the only problem. As of now, 1.5yr later, my EBV is passive as in all 95 percent of population, but some of my symptoms persist. I am still in the progress of doctor visits, tests etc, but my fatigue and fever are largelly controllable by controlling what I eat, although my muscle soreness is the same - walking may result in 4 days of pain.

    I was always suspicious about reactivated EBV as a cause. As long as there are many other conditions which reactivate EBV, I believe it is a symptom, and not a cause of the illness.

    So my message is that even though it is not clear or impossible to find out what is the cause, reactivated EBV should not be accepted as diagnosis. It is so because my doctor told I should wait, the illness will go over by itself. In my case, it doesn't. For me it is a loss of time - I believe the earlier you start to control symptoms and different factors (the most important of which is body wide inflammation in my case) the better and earlier chance of some recovery.

    My personal findings were that most probably I was/am infected with parasites (they never came up in tests while they came up visibly, but that is normal, if we believe in statistics, which says microscopic tests are no more than 20 percent accurate), and officially I have blastocystosis. Blastocystosis explains already a lot, but not everything, nor there is enough of scientific data about it to make proper conclusions.

    From my experience it pays off to stay positive (I am still not sure if it is not for the antidepresants that I am so positive) and continue doing tests, searching for causes.

    Even if i feel much better and I am able to live a life (although different from previous), I feel an obligation to my old body (as if it was an old friend) never to stop searching and trying to heal it. One thought helps me to regard it be a life - currently it is the only one available. I imagine I was born like that, and then I stop seeing possibilities I do not have anymore, and see available possibilities instead.

    As you too started with EBV, maybe there are things from my experience that can be usefull to you.

    Omega 3 - helped me with palpitations, it is also said to be highly anti-inflammatory
    Most of other supplements became usefull only recently - before that I was either having more fever or no effect, which means waste of money.
    Eliminating carbs and starches reduced the inflammatory state (but I became more sensitive to carbs and lost weight)
    I had iron and magnesium deficiency and tried to take different forms of these with no significant improvement, stopped taking them with the idea not to give them to my bacteria to build the biofilms (biofilms are controversial, but if I have no positive nor negative effects, why take them).

    I found teas like detox, thyme and mint to be helpful for general wellbeing, like gut, temperature regulation.

    Fresh pomegranate and pineapple seem to be the only fruits I tolerate. I eat pineapple to fix my gut when I disturb it with other foods.
    I have received only blastocystis treatment (no luck yet), and have infectologist appointment scheduled next month, and I will try to push on getting parasite antibody tests to confirm my version as well as to get prescription for other blastocystis medication.

    It seems to me, that food elimination diet can give positive results to many people. It is controversial too, it does not come up positive in intolerance tests and moreover if you stop taking a product for two weeks as adviced in elimination diet, the counts of bacteria which digest such foods reduce and you have reactions. Personally, if I do not have fever and fog as before, I consider it positive result.

    So, I wish you best in your own searches and staying positive.
     
  13. Lee Ann

    Lee Ann

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    Hello Lucy,
    So you continue to have fever? That is one symptom I do not have. The initial onset I had fever but not since. The sore throat remained though. It's not every day. I occasionally have muscle ache or mine is more like I am being stuck with a hot poker. Very intense. In the beginning, I was definite it was MS. MRI showed no lesions no tumor. Then I moved on to ALS because of the muscle twitching. Had an EMG a very painful test, who thinks up these things, and that was negative. Thank God... I was so relieved. I think ALS is one of the cruelest diseases ever. You usually don't live over 5 years. So, on down the line I went. Ruling out the ugly ones first. And then a doctor did some extensive blood work and found reactive EBV. Just had western blot done for lyme. Who knows....I try really hard to stay hopeful but there are days like when I see someone running, and I just break down. I think, that use to be my body. I really miss the feeling of freedom that I felt from running. I've done it for years. But one day, I'll put on my running shoes and this will be a distant memory. Every one here has been so kind. Thanks
     
  14. richvank

    richvank Senior Member

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    Hi, Lee Ann.

    I'm actually a researcher, not a licensed physician, so I can't give individual treatment advice unless a physician is on board to review my suggestions in the light of knowledge of the details of the particular case. Generally speaking, I think it's usually a good idea to do testing and diagnosis before treatment. It may take some time to get the test results, though. With regard to whether to do both treatments if there is a partial methylation cycle block and elevated viral titer, I can tell you that some of the people who have reported the most success with the methylation treatment had done antiviral treatment beforehand. I guess that's about all I can say in response to your question.

    Rich
     
  15. Merry

    Merry Senior Member

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    Columbus, Ohio, USA
    Welcome, Lee Ann.

    I can't add any info on reactive EBV. Just wanted to say hello. Oh, you might find the threads on the new research on the retrovirus XMRV interesting.

    Merry
     
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    My ME/CFS started with EBV. I saw an infectious disease doc at the end of October,, and he gave me the Lab Test requisition form, and he has EBV as one of the many test to have done. Just find it hard to make it to some place to have my blood drawn!

    GG

    PS Are you looking for a Dr or are you happy with yours?
     
  17. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi Lee Ann, just wanted to say you may find it helpful to read my post titled "Canadian Consensus Clinical Case Definition for ME/CFS -Important to Read" It is under "General ME/CFS News". It is THE document that describes what ME/CFS is, way beyond anything the CDC has written. The "CCC" was written by the best ME/CFS doctors and researchers around the world, people who have real world experience with ME/CFS patients. It may give you some insight into some symptoms you have been have been unable to understand or find help for, and/or possibly lead you down a different direction to exploring different disease possibilites (although it sounds like you have already had many tests).

    All the best.
     
  18. Lee Ann

    Lee Ann

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    Rich,
    Hello and thank you. What type of researcher are you if you don't mind me asking? I became sick last Aug and have decided that I should not give this virus anymore time to replicate in my body. Even though the thoughts of taking a drug doesn't sit well with me, I have to be proactive and combat it at all angles...viral warfare. Who knows, maybe my experience can be helpful to someone else.
    Lee Ann
     
  19. Lee Ann

    Lee Ann

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    Hey moon,
    I appreciate your info. I scanned through the article. I stay confused because some of the symptoms are not me but I have had some many things ruled out. I suppose I am the few that do not have joint or muscle pain. idiopathic I think is how they referred to it. I think if it were not for the sore throat I have, I would really question my dx. Even though I have reactive EBV... I had a very well known doctor tell me that they really don't know much. Our bodies are so complex. I'm not sure if that was reassuring or not..
    So, I have to go with what I know and that is treating the EBV.
     
  20. Lee Ann

    Lee Ann

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    Hey Merry,
    Hello back. nice meeting you
     

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