Can you really get better???

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Aug 22, 2009.


    LISALOO New Member

    I've tried everything for CFS? Diet, accupuncture, about 300 supplements, antivirals, candida cleanses, liver cleanses, yoga, etc.

    The only things that helped were accupuncture and gamma globulin shots, but that stopped working after a couple of months.

    Five years later I don't know if I can make it another day. I'm so much worse, I can't do anything.

    Is there really a chance to get better, especially when I've read every article and book and there's nothing I haven't tried?
  2. greatgran

    greatgran Member

    I am in the same boat as you.. seems the past 2 years I have gotten worse and at my age I don't think I will ever be any better. I get so discouraged with the doctors taking my complaints so lightly and everything about this darn dd.

    Sorry, I am of no help and don't mean to sound negative but I feel for be its reality.

    There are those who do improve so hope you hear from them . I have read if you don't improve within the first 5 years you may not, well its been 8 for me and I seem to be getting worse but it could be an age issue.

    Lots of tears shed over this but what can we do.

    God Bless,
  3. TeaBisqit

    TeaBisqit Member

    I'm better than I was, but I'm still a hundred percent disabled. But I'm not bedridden now. I'm housebound. I can stand for longer periods of time now. But I can only leave the house about two to three times a month. And those trips nearly kill me and put me back on the bed or couch for another week each.

    After nearly twenty years of this disease, I am not cured, I am not fine. I am better than I was, but it's no life. I'm housebound with no life from it.

    All I can say is, everyone is different. You might still find something that helps. But there are no cures and there are no magic bullets with this disease.
  4. richvank

    richvank New Member

    Hi, all.

    For those who haven't yet done so, I would suggest that you run the Vitamin Diagnostics methylation pathways panel. If it turns out that you have a partial methylation cycle block, depletion of your folate metabolites, and depletion of glutathione, which has been found in most PWCs who have been tested, you are a candidate for treating to lift the methylation cycle block. This treatment is helping over two-thirds of those who are trying it, including some who have been ill for many years. For those in Europe, this panel is available from the European Laboratory of Nutrients in the Netherlands. I have no financial interest in the test panel or the treatment.

    Here's the contact information for the Vitamin Diagnostics test:

    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 costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone, or you can use the information below:

    Interpretation of the Vitamin Diagnostics
    Methylation Pathways Panel

    Rich Van Konynenburg, Ph.D.

    Several people have asked for help in interpreting the results of
    their Vitamin Diagnostics, Inc., 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., who is the director of the
    Vitamin Diagnostics lab.

    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

    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.

    Rich Van Konynenburg

  5. LindaJones

    LindaJones New Member

    The Whittemore Peterson Institute will be opening in 2010.
    It is the only medical institution that specializes in cfs and related medical conditions.
    They will be doing research and they will have supportive services for patients.

    LISALOO New Member

    Thanks for all your responses.

    I feel even more hopeless now. I don't want to continue.

    I've tried the whole diet, gut disbiosis, my tests are fine now, I'm worse. So no go there.

    I don't want to suffer anymore.
  7. momof27

    momof27 New Member

    I found that if I spend at least six hrs in the swimming pool I have a pretty good life but on days were I don't I go back to the same ole thing pain and all that goes with it Can any of you tell me why I feel like a fish and this is no fish story it's true everyday about noon till most days dark ?????? but the relief is super.

    Do you think it id the vitamin D ?? from the sun?? I am serious it is hard to bake in the sun all day but the relief.
  8. romalaw

    romalaw Member

    Lisaloo and others, I am writing to offer some hope. No I have recovered and I have gotten better. When I first became very ill in 1998 I was diagnosed with CFIDS by none other than Dr. Lerner himself. Mine was the classic onset after a viral respiratory flu. I had high viral titers and was bedridden. I decided not to be treated by Dr. L.

    I would say I have recovered about 60%, on my best days may be 65%. It has been slow, uneven, discouraging and heartbreaking. At the beginning, it seemed the organs in my body were in a malfunction rotation, I would get one system settled down only to have another one flare up. Besides the debilitating "fatigue" (such a weak word to describe such a profoundly severe state of being), I had all the classic symptoms/problems, gut, brain and neurological issues. I suffered from sensory overload and chemical sensitivity. The list is endless........

    I believe the progression of my illness fits Cheney's theory of the three phases of CFIDS. I arrived at the 3rd stage about 4 years ago. I am not so actively ill and can function within a narrow envelope of energy and activity. Ironically, though I am more even now, I have less "push" than I did in the earlier stages. I not only have to pace my physical activities but my mental ones as well.

    I did not really improve until I stopped working. 9-10 hours of sleep and a schedule that allows me to lie down frequently during the day is critical to my functioning. During a week, I can cook some meals, do some housework, even do some grocery shopping. I can socialize but I have to pace it carefully. With the support of my husband and careful planning, I can even do some traveling.

    What has helped me the most is Armour thyroid, prednisilone, klonopin, large doses of magnesium, NADH, malic acid, probiotics and digestive enzymes.

    The key to maintaining this level of health is careful pacing and being in control of my own schedule. It is a fragile balance to maintain. But I am grateful to have some semblance of a life though one that is greatly diminished from my former one.

    One thing I have learned the hard way is that any kind of prolonged regular exercise will set me back every time.

  9. burkmeer

    burkmeer New Member

    Rich, I"ve had CFS for 22 years..can function at work, but still a lot of are my results..please suggest protocol or next steps..thanks...don't know where else to turn...

    Thanks for any help you can give me...

    I'm also in the East Bay should you want to consult, I'd be willing to meet with you....

    Misc Ref Range
    Glutathione (oxidised) .26 .16-.50
    Glut (reduced) 3.3 3.8-5.5

    S- Adeno...onine(RBC) 205 221-256
    S-Adeno....eine (RBC) 34.8 38.0-49.0

    FOLIC Acid derivatives
    5-CH3- 9.7 8.4-72.6
    10 Formyl 1.8 1.5-8.2
    5- Formyl 1.40 1.2-11.70
    THF .72 .60-6.80
    Folic Acid 12.4 8.9-24.6
    Flinic Acid 14.3 9.0-35.5
    Folic Acid (RBC) 317 400-1500

    Adenosine15.3 16.8-21.4

    [This Message was Edited on 08/25/2009]
  10. richvank

    richvank New Member

    Hi, burkmeer.

    Please see my response posted to your thread.

  11. Elisa

    Elisa Member

    Hi Lisaloo!

    I'm so sorry you are so sick - I am too. I know how hard it is to hold on and to hope for something to keep you going.

    I cry until I run out of tears - the despair is aweful and the wanting to get better is so so so hard - beacuse there is not clear path that we can see...yet.

    The other day - I cried the whole day - I even drove around my block in tears - just mumbling "I can't take one more minute." I guess I wanted God to hear me - someone to do something - something to change.

    I have reached, as of late, the hardest times emotionally. Feeling like an empty tank and being truely afraid that deep down I had given up. Just so so devastated - AND I've had this illness 13/14 yrs.

    So just continue any way you can - because something is bound to happen, maybe very soon. I think to myself - just maybe there will be a breakthrough - on the front page of newspapers - it's possible - it can happen - deep down inside we know it can. That is why we all hold on the best we can - even if it's just laying in bed in tears.

    I don't know if you pray - but even if you don't - God can hear YOU, your situation, as a prayer. That is comforting to me.

    No matter what, I will pray for you.

    I know the desperation, the devastation - the torture of it.

    As odd as it may sound, its true, I need you and all my message board friends.

    God Bless You,

    [This Message was Edited on 08/25/2009]

    Oh here's a couple items for you:

    "There is no medicine like hope, no incentive so great, and no tonic so powerful, as expectation of something tomorrow." —O.S. Marden

    I'm going to post one of my favorite prayers by Jill Briscoe - on the Worship Board. It really helps me.

    [This Message was Edited on 08/25/2009]
    [This Message was Edited on 08/25/2009]