The challenge of relapse (again) (and again) (repeat)

Discussion in 'Fibromyalgia Main Forum' started by hubcap_halo, Nov 17, 2009.

  1. hubcap_halo

    hubcap_halo New Member

    I know there is a lot of suffering out there.

    You know those periods where you are finally improving a little, and it's like---I get very optimistic, I make my diet more pristine, I meditate more, I listen to spiritual books and affirm more, I do all I can. I was in this place this summer and early fall, and my elderly father had just had back surgery so I was taking care of him and it felt good to help. I was structuring my days with a healthy routine. I was trying to get enough rest and balance and thought I was doing ok at it. But really I was pushing myself again. I let the expectations of others--and, I don't know, is it enthusiasm or just a desperate desire to believe I'm getting better--run me into relapse.

    The not unusual, change of seasons October cold--But I felt strong so I mostly just worked through it and limited my activity, a little. Oi. I've had this condition for 13 years---you'd think I'd remember the wise lesson: REST AND REST AS SOON AS YOU FEEL ANY DIP IN HEALTH.

    Finally I rested and got a little better. But then it came again and I rested what I thought was enough, but then it came and again, and again....and now it's a full fledged relapse and the only thing that seems to help is bedrest--and meditation and audiobooks so my mind doesn't go down the dark rabbit hole of "My life blows. What kind of life punishes you for trying to be productive and help others and exercise!!??" (The usual self pity thing, and then I try to let that pass)

    As is my pattern, the anti biotics have no effect on my chronic sinusitis or how I feel. Nor do anti fungals. Nor did the compounded anti biotic, anti fungal spray--at least in the past-- though I might try that again. The only thing that seems to restore any bit of health is rest. (and the sinus surgeries I've had in the past) I have to get my sinuses cultured asap now that I have lots of infected gunk up there because usually culture results are no fungus, nothing special. My allergy tests are negative or very mild. I eat the most simple diet of lean meats, fishes, veggies, quinoa and oatmeal. I think my sinusitis is more an outgrowth of the whole disease process. I'm seeing a top ent in December but I'm calling daily to see if there's a cancellation. I need this looked at. And a new CT scan.

    I know many of you can relate. I had a tiny glimmer of hope that I was improving and then BAM, down worse than I've been in a long time. You feel like you're going insane, feeling sick every day.

    The one lesson I KEEP FORGETTING is when a cold comes or a flare----rest until it feels as if it's totally cleared up. And if you can, then REST A FEW MORE DAYS.

    But so many of us can't do that, we have people to take care of, work, or whatever else. Well, I guess I have to make it a priority because if I stay in a flare I can't help anyone anyway.

    [This Message was Edited on 11/17/2009]
  2. richvank

    richvank New Member

    Hi, hubcap.

    I'm sorry to hear that you are struggling with a relapse.

    I recall that quite some time ago you had started on treatment designed to lift a partial methylation cycle block, but then you stopped in order to do antiviral treatment. Somewhat later, as I recall, you were giving the methylation treatment another try. How did that work out?

    The main thing I'm wondering is whether you ran the Vitamin Diagnostics methylation pathways panel to see whether or not you have a partial methylation cycle block. I recommend that people do that first now, so that they can see if they are working on the right problem with treatment, and also to have a baseline to judge how the treatment is working. Now that one or two people have had over three years of experience with this type of treatment, and several others have had over two years, it appears that recovery can be a slow process, apparently due to the time it takes to rid the body of accumulated toxins, including the toxic metals.

    The Vitamin Diagnostics lab has had to move to a new location in New Jersey because the building in which they were leasing space was condemned. Here is their new contact information:

    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.
    540 Bordentown Avenue
    South Amboy, NJ 08879
    Phone:+1 (732) 721-1234

    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.

    Here is information for interpreting the panel results:

    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.


  3. hubcap_halo

    hubcap_halo New Member


    Wow, you have a good memory. Well, the Valcyte was not good for me. And then I did resume the basic Methylation Protocol, but only for 6 months and I wasn't experiencing improvement and money stress was mounting so I cut it off. But now I see from your post (and another friend) that it took some time. And this other friend also had the Vitamin Diagnostic testing done and I think some full testing and had you review it. Anyway, she credited you with helping her get out of the bedridden mode.

    I will get that test.
    I have to go all out and get some improvement.
    I was making some headway this summer and early fall.

    Dr. Vrchota believes in your work very much and I trust and respect her very much. I will ask her to help me get the test.

    Thanks again.
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    We have two things working against us. Life pulls us into doing more than we should. That is people ask us to do things, or errands need to be run or friends ask us to join them in doing something fun.


    Human nature is to respond to the way your body feels. But if we wait until we feel tired, we have already pushed ourselves into a relapse. We need to make time for rest, even if we feel good.

    Now, if only I could apply that to myself.

  5. sascha

    sascha Member

    i've had wicked sinus problems with infection. use of a neti pot helps clear nasal passages out. it seems to help ease sinus problems. i've been using NeilMed Sinus Rinse- packets come in a box from Walgreens, and you can get the full kit of packets with neti-pot. Sascha
  6. ladybugmandy

    ladybugmandy Member

    just pin your hopes on XMRV. i am 100% sure thats the cause of all this. once they target that, you are homefree.
  7. hubcap_halo

    hubcap_halo New Member


    Too true.

    But we can't blame ourselves. When I feel a bit better, it still seems like I'm barely doing
    anything....just the most simple life tasks...

    My new rule is once I get out of this...two 15 minute to half hour rest periods a day no matter how good I feel.

    Let's see if I can keep that.
  8. hubcap_halo

    hubcap_halo New Member

    I would love that to be true.
  9. hubcap_halo

    hubcap_halo New Member

    But I use a waterpik. Have for many years. Several ENTs after some (actually very helpful) surgeries declared, "Your cillia don't work, you have rubber cement up there, you need to clean out with a water pik."

    If I don't I can feel the stuff build up. Sorry to spoil appetites.
  10. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Well, I haven't rested yet today. But I did put off an errand (shopping) that would have been too much in one day, even though it was convenient for me to do it.

    I gave blood for lab this morning. Shopped at Michael's. Stopped at City Hall to talk to someone. Stopped by post office. And went grocery shopping (half week's worth- can't do a full week at once). Since I was out, I wanted to return some clothes I bought over a week ago. But I refused. Skipped the trip to the bank also. And now I am in the bed. Not resting, but I will at 4. I will rest for an hour. (Is now 3.) And I fixed enough yesterday for us to have left overs for supper. This evening, I will just work on jewelry, which takes even less energy than typing on the computer. Tomorrow I am staying home. Returning the clothes, which means I have to shop for the replacement ones and depositing money in the bank will have to wait until next week. I have to save up the rest of the week since hubby and I are going to his mom's, three hours away, this Satureday.

    We just have to realize we can not do all we want to do.

    I look at it like this way....
    Think of someone without a lot of money. They get one check a month. How tempting it would be to do what you feel like as far as buying the stuff you want when you get the check. But if you do, you will run out. So you have to budget your money.

    This is the way we have to do with our energy. Even though at the moment we have a lot, we know that we won't get a lot more later. If we spend all our energy, then we run out. So we have to budget our energy, or pace ourselves.

    [This Message was Edited on 11/18/2009]
    [This Message was Edited on 11/18/2009]
    [This Message was Edited on 11/18/2009]
  11. hubcap_halo

    hubcap_halo New Member


    You are still doing quite a lot there. Give yourself credit. And taking time to rest too, very wise. Whatever treatments you're doing, they must be doing some good. It sounds like you are doing your best to have a life, and you are watching yourself so you don't over do it. Very good.

    I'm really trying to learn to pace myself.
    I'm working on scheduling my days more so I see what's ahead and can budget time better.
    [This Message was Edited on 11/18/2009]
  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Relatively speaking, I know I am fortunate.

  13. Bunchy

    Bunchy New Member

    I really do empathise.

    I have had a bad flu and ever since have lost all the headway I have made over the last year with activity increases.

    I'm back to baseline level now struggling to lift a cup without shaking so much that I spill it everywhere.

    Before this flu, I had begun to be able to take walks, do basic exercises and cook basic meals every day for myself and DH. It felt so good to be able to resume some activity and keep up with household stuff etc.

    I can't bear the thought that this post flu relapse might very well last for months again as it has done in the past.

    It sucks, doesn't it :(

    Best to you , at least you have good docs in the US, here in the UK they are hopeless. I'm lucky (so far) to have had docs that at least allow me enough appropriate meds for symptom relief.

    I hope you get back to remission again soon.


    Bunchy x
  14. mbofov

    mbofov Active Member

    I second Rich's suggestion. I've been doing the methylation protocol off and on for about 2-1/2 years (yeah, a long time), and feel like I've made very slow, but steady, progress. Overall I'm doing better, althoughI am crashed today - overdid it yesterday. But crashes are lighter now and I get over them quicker.

    I'm still detoxing when I take the meth supps (every other day), but detox symptoms are not as bad as in the beginning either.

    It realliy does help to get the Vitamin Diagnostics test done - I had it done after doing the protocol for 2 years (!), and it was reassuring because it did show a partical methylation cycle block, although not severe, but it confirmed that I was going in the right direction. It would have been useful to have done the test in the beginning.

    The methylation protocol is not fun. But it's the only thing I think that has helped me make any progress. Also, for most of the 2nd year, I could do it very little because I was sick so much so could not handle detoxing on top of being sick. Taking a thymus gland extract from my chiropractor (who does applied kinesiology) helped boost my immune system such that I was able to restart the protocol.

    About a week and a half ago I started to feel halfway normal for the first time in years. I just felt more well, hard to describe, had a bit more stamina, but still was being very careful, resting all afternoon. Then yesterday I overdid it and I did crash, but it's just not as bad as before.

    Also, muscle testing gave me the encouragement to continue with the methylation protocol - the testing has consistently indicated that the methlation protocol is helping me, and with lack of any firm guideposts with this illness, the muscle testing has been invaluable to me.

  15. hubcap_halo

    hubcap_halo New Member

    My other friend who it helped also had a strong detox reaction to the b12 intrinsic and the folapro, so she had to take tiny doses.

    Strange thing for me is I had no reaction at all. I could take the 1/4 pill or 1/2 and I felt no herx or detox symptoms. I guess I should have the Vitamin diagnostic test done.
  16. hubcap_halo

    hubcap_halo New Member

    That after making some headway you've experienced a relapse as well.

    I call it the "Lucy holding the football for Charlie Brown and then pulling it away when he comes to kick it" Syndrome. I could consider shortening that title. Or consider if it even makes sense---Peanuts characters to a UK person.

    Don't you have Dr. Myhill in the UK? She's supposed to be great I hear.

    You will regain that ground. The flare is temporary. I make a mantra.
    hugs and best to you
  17. astroherb

    astroherb New Member

    hubcap_halo do you mean that you actually use a waterpik to irrigate your sinus cavities? Do you have a special tip for the waterpik of what. I use the Neil Meds regularly with a little goldenseal powder mixed in to help kill bacteria, etc. It works really well to keep sinus infections away; but I still haven't found a method of application that I like. More info woud be appreciated.
  18. hubcap_halo

    hubcap_halo New Member

    Yes, I use a regular waterpik.I don't use a special nozzle, I just have the setting low enough so it feels soothing rather than harsh. I've been using it for so many years that I'm totally used to it and it's really the only way I can clean out my sinuses. If I miss a day I feel it.

    I'm going to borrow your goldenseal idea. I've used a drop of tea tree oil and I once knew an acupuncturist who made special formula including grapefruit seed extract.

    I wouldn't recommend the waterpik except for those of us where our cillia, for whatever reason simply don't function, and that's been confirmed by several ENT's over the years for me. If you have functioning cillia then a neti pot should be sufficient.
  19. Fibrolady37

    Fibrolady37 New Member

    im so sorry to hear your suffering so much i really am i know exactly what you mean when you do all the right things like eat well exercise & rest a lot then the relapse comes & you wish you hadnt over done it so much.
    I used to be a nursing auxillary & i really found my vocation in life i loved my job & i wanted to train to be a SRN.
    I was getting ready to go to work one day when my whole body started shaking id eaten break fast so i knew i wasnt hungry & went off to work.
    I worked on the neurology ward & i wanted to see a patient on my ward before i started work i went onto the ward & i got to the end of his bed when i suddenly collapsed i have neveras scared in my life.
    I was rushed to A & E & 1 of the doctors came to examine me my whole body was shaking & i couldnt stop it she gave me an injection & said she would come back to see me.
    I was so worried i just couldnt think what was wrong with me.
    I was dx with ME & Fibro in september 1996 & i told the consultant he said im sorry but i cant accept that dx off you because you have to have been dx foR 2 years by a hospital consultant.
    I was out of my mind with worry & the worst thing was i was all alone in the hospital.
    I was so ill i was sedated all the time i didnt know what day it was the whole time i was there.
    Eventually my consultant accepted my doctors dx i was so relieved that he had done i was put on very strong pain killers anti inflammatories & lots of other pills for various other illnesses.
    Ive always been very fit & i had a very demanding job a hectic social life & a small child to look after & my friends have always called me super woman!
    I was bed bound & in a wheel chair for 2 years it was the worst ever time of my life it really was & i found it very difficult to accept.
    13 years later i may not be super woman but my 16 year old daughter says im super mum i feel so proud of her!
    You have to remember to take each day at a time & dont do to much & make sure you get lots of rest ok?
    Have you got any children?
    May god bless you & yours.

  20. Catseye

    Catseye Member

    What are you eating? Have you given up dairy? Chronic sinus issues are classic dairy intolerance signs. If you must have milk, use raw or substitute almond milk. There are raw milk cheeses you can find in health food stores.

    Have you had a CDSA (comprehensive digestive stool analysis) done to evaluate the state of your gut/immune system? Probably it's a mess and that's another reason why the dairy protein is causing the sinus issues. It's possible it's another protein like gluten but dairy is the most likely culprit. You should give them both up, or have you already? Undigested food particles, especially proteins, will give the liver a lot of grief, too, as well as all other organs.