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Discussion in 'General Treatment' started by Rsmy59, Jan 10, 2011.

  1. Rsmy59

    Rsmy59

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    St. Louis, MO
    I've been ill since 1983 and relapsed big time a few years ago. For the last couple of years, I've gone the alternative route, although my doctor practices traditional medicine as well. I've been taking a lot of supplements, had neuro-integration and have had about 50 NAET treatments. I've also recently started seeing a chiropractor who inundates me with various theories from nutrition response testing. All the while, I am feeling worse and worse. I'm currently having a lot of digestive issues - nausea, heartburn, some upper ab pain, etc. I had a lot of x-rays and testing done 3 yrs. ago with normal results but with the continuing issues I'm having, I'm wondering if I need to be re-tested. I really don't want to waste my time and money again, but I'm worried that by focusing on my CFS, I may miss something else. I'm not a spring chicken anymore! Any input would be really helpful. Thanks.
  2. Julia Rachel

    Julia Rachel

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    California
    Have you been tested for the CFIDS viruses and co-infections? The co-infections alone can cause the symptoms you describe. Testing information along with Test codes, diagnostic codes and insurance billing codes are at VLG on VALCYTE BLOG. Any trusted MD can run these tests for you. Good Luck......
  3. alice1

    alice1 Senior Member

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    hi rmsy,
    i just got diagnosed with 'small intestine bacteria overgrowth' and my symptoms sound exactly like yours.
    dr klimas has suggested going on nystatin for a week with a lot of probiotics to put back the healthy flora.
    there is a breath test that is done for this..i didn't have the test but i was reading about the symptoms,emailed with someone here who had it then spoke with doc klimas.
    i hope this is useful info for you.also have them check your candida.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Like julia has said, get alot of testing done so u know what you are fighting, all the herpes viruses, mycoplasma, stool testing as well as immune testing like lymphocyte subset test, natural killer cell function test as these last 2 can help with immune defiencies as well as helping to diagnose an infection of some sort. If in the states, try get xmrv test done. Also get all hormones tested and treated so that they are all within normal ranges as this can impact immunity and general energy. Treatment wise that can be started before testing etc is treating sleep and any pain etc this can help improve function and bolster ytour system to fight another day as well as general health supplements like antioxidants, fish oil etc. also pace yourself and dont over do things .

    keep us posted on how u go.

    cheers!!!
  5. ukxmrv

    ukxmrv Senior Member

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    I've been ill for around the same time as yourself. For the first years I was vulnerable and spent a lot of money on alternative therapies. I just got poorer and sicker. Very few of the treatments or vitamins I have bought over the decades helped me. I tried a load of different diets etc from alterntive medical people and they were a waste of time. I met a lot of strange ideas about the illness that didn't match my experience. Sadly my health deteriorated during this time. I never recovered.

    Where I did get help from was a conventional doctor who specialised in CFS. He was able to offer testing and treatment for some of my symptoms. At least he understood the symptoms and could offer workarounds and explanations that matched what was happening to me. Testing for the common viral/bacterial infections led me to antiviral drugs that have helped. The natural alterntives I tried just didn't work.

    In addition the ME/CFS groups on the internet have helped me. The best supplements I have tried came from other CFS patients.

    My advice would be to find other patients in your area and see where the good doctors are for ME/CFS and be very fussy in their answers. Check that they really know about the disease.

    Find other patients with the same symptoms, length of illness and acute and see what they are trying /taking.

    Wishing you all the best.

    XMRV+
  6. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    All of the above is good advice. Where to start is probably the big question. While you have been trying the more natural approach you could have possibly had a virus (or viruses) make their presence known, your hormones could have easily gotten out of balance with this disease and you could have developed an gastrointestinal infection.

    Hard to say where to start first, unless you can get all of the testing done at one time. I'm not the biggest proponent of treating symptoms, but I strongly urge you to not let your symptoms drag on for an extended period of time. The stress from this can skew some lab results and cause your health to deteriorate at a much quicker pace.

    I hope you find some relief soon and I hope that you will post back with your results.

    To gettin better soon!
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Symptom treatment is a stop gap until u get on the right treatment. But sleep is a common problem with cfs which could be due to some type of damage to the brain from infections or elevated inflammatory cytokines. Poor sleep has a carry on effect to the immune system, hormones etc. from my own personal experience, without treating sleep i would be struggling to work and other treatments that i have had success with wouldnt have been very helpful without proper sleep. I think sleep is probably the most important symptom to treat if its a problem. I am skeptical about treating fatigue with stimulants as i think it would just run your system down further, but it comes down to individual circumstances and what u and your doc come up with. So far everyone has had good advice and we all learn from each other.

    cheers!!!
  8. Rsmy59

    Rsmy59

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    St. Louis, MO
    Thanks so much for all the input. I've had a lot of testing done over the years and recently I've had more unconventional testing (at least in terms of traditional doctors). I have pretty classic CFS results - positive for EB and herpes, normal T3 and T4 but high T3 reverse and low sed rate, cortisol and DHEA. The problem I always have is that my illness plays out in various organ systems that can last for days, months or years and then possibly never seen again. I had a lot of breathing difficulties about 10 years ago that hung on for a couple of years but now, for the most part, are gone, then neurological issues for awhile, now the gastro stuff. Of course, if it's CFS, chances are nothing is going to show up in any additional testing but I guess checking new symptoms out is something we just can't get around if we want to play it safe.

    During my last visit with the chiropractor, while doing muscle testing, he said the organs that were popping up were stomach, gallbladder, liver and ovaries, the food intolerances were sugar and the only other thing was parasites. I've never been tested for parasites but I've often thought about it. I saw that there was some research into a chronic roundworm associated with CFS. I guess it might be worth a shot.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    With a positive ebv, antivirals could be of help. Also low cortisol and dhea can cause problems with thyroid especially reverse t3, sometimes using pregnenolone helps restore all the down stream hormones like dhea cortisol etc, once theres adequate cortisol u may find your thyroid hormones working better as they really need a supply of cortisol. Some people who are hypothyroid and get worse with thyroid replacement, its usually due to adrenal fatigue with low cortisol levels. Working with an alternative doctor should be able to help.

    good luck!!!

  10. kat0465

    kat0465 Senior Member

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    Texas
    i know this gets old, the testing and dr's appts with not much results! But check it out if its new or different.

    for over a month i have been feeling, idk different. not much mind you, but kept feeling a little off. well last wednesday it hit me like a mac truck!

    the upper abdiminal pain got so bad, bloating, other stuff thats tmi, but they were all magnified from before. dummy me i thought it was costo, or a pulled muscle.

    today i go in for a catscan on my gallbladder, pretty sure it's a gallbaldder attack! im guessing they will have to yank it;(
    so if your feeling a little different, get it checked!! a lot can happen in 3 years!

    Kat
  11. richvank

    richvank Senior Member

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    Hi, Rsmy59.

    I'm sorry to hear about your extended illness and the relapse.

    I would like to encourage you to test to find out if you have a partial methylation cycle block, folates draining from the cells via the "methyl trap" mechanism, and glutathion depletion.

    Based on a large body of lab testing over the past three years, I believe that this is the root issue in most cases of CFS and the good thing is that it is treatable with targeted nutritional supplements, no prescriptions. This treatment has been a significant help to most who have tried it.

    By the way, I have no financial interest in the testing or the supplements.

    If you want to find out more about this, go to www.cfsresearch.org Click on CFS/M.E. and then on my name, and read the last one first (the Yasko conference talk). It's pretty readable, and it tells the story. You can read the other papers if you want more details.

    Given the gut problems you are experiencing, you might consider treating those while treating the methylation cycle partial block, if you turn out to have one. Unless the gut is functioning well enough to absorb nutrients and dispose of toxins, it is difficult for the methylation treatment to work.

    I hope this helps.

    Best regards,

    Rich
  12. rlc

    rlc Senior Member

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    Hi Rsmy59, I know it's a pain to have to do, but my advice is to get tested by a doctor in case there is something new happening that is serious and needs treatment, they should be able to work out whats been going on with your health from those previous failed test results!!!

    All the best
  13. Rsmy59

    Rsmy59

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    St. Louis, MO
    heapsreal - A couple of months ago I had a shingles outbreak and started on L-Lysine which is a natural form of an anti-viral. I've also been taking Cytomel for the last 1 1/2 years but I'm not seeing any results other than bad ones. I've just recently cut back from 10 mg. to 5 mg. because my SHBG was high. I'm going to stick with the L-Lysine for awhile and see what happens.

    kat0465 - I've also had chest muscle pain that I think is costo but gallbladder issues are always in the back of my mind as well. Good luck on your scan. Would you ever consider a flush before surgery?

    richvank - Thanks for the info. I just had uranylisis testing done through Metramix Labs to determine how my body is absorbing nutrients, oxidative damage, methylation markers, etc., which basically showed I was functioning at about 50% and B-12 was a little off, but folic acid was good. I've since added methylcobalamin to my supplements. I'm looking forward to checking out the site you suggested.
  14. richvank

    richvank Senior Member

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    Hi, Rsmy59.

    I'm glad to hear that you had this testing done. That can be very helpful. I do want to note, though, that the standard, computerized interpretations that labs like Metametrix and Genova Diagnostics give with their test results do not take into account the mechanism that I have suggested is going on in CFS. They give a standard nutritional interpretation, indicating deficiencies. So a person may still have a partial methylation cycle block, folate metabolites drained from cells, and glutathione depletion, and this combination may not show up on this type of test panel. The best panel for this is the methylation pathways panel offered by the Health Diagnostics and Research Institute in New Jersey. Contact information and a guide to interpretation are below.

    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, or you can use the interpretive guide below:



    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.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Shingles, this could be alot of your problem, where did u have the shingles, google post herpetic neuralgia, treatment requires early use if antivirals like famvir and pain relief meds as these reduce damage to nerves from shingles virus, this is where toughing it out isnt any good u have to treat the pain to stop damage to nerves(could be causing your chest pain). my cfs started with chickenpox which is related to shingles, i wonder if this is the cause of alot of my muscle pains, my neck is killing me the last few days.

    As for thyroid not working, definately look into cortisol production, its common for people with poor response to thyroid to have cortisol problems. Sorry to ask but your name is hard to tell from, but what sex are u, if male and SHBG is high this can be due to elevated E2 levels as well and there is medication that can lower this and make u feel better, arimidex is what is commonly used.

    cheers!!!

  16. kat0465

    kat0465 Senior Member

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    Texas
    i have thought about doing a flush,if i dont have stones( i know makes no sense) i have been reading up and i didnt know your gallbladder can have what they call sludge, and no stones.they say this is just as painful. im scared of doing the flush with stones cause im afraid one will get stuck :(

    that would be just my luck!!

    Kat
  17. Rsmy59

    Rsmy59

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    St. Louis, MO
    The shingles started at the base of my spine on the left with just 4 blisters and then a cluster on my left knee with a few scattered on my left thigh. Over the years, I've had nerve pain on either thigh but never had blisters to go along with it and I've often wondered if it was some form of shingles. I've also had costo-type chest pain since then and I read that can be caused by herpes zoster, although I don't know much about it.

    I'm a woman - a perimenopausal woman - so I know my hormones are all over the place. My doctor has scheduled an ultrasound of liver/gallbladder area so we'll see if anything shows up, although I actually hope it doesn't.
  18. kat0465

    kat0465 Senior Member

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    Texas
    glad your getting a ultrasound of that gallbladder, if your a woman especially. it seems like most of the women i know don't have thier gallbladder anymore.

    Just to be on the safe side, the dr chewed me out pretty good, said if i was in that much pain it could have ruptured! we sure don't need that. let us know what they find. Hoping it's not your gallbladder either.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi rsmy59 i hope u get some answer from your ultrasound, for what its worth, i have had good pain relief with tramal/tramadol as well as lyrica. Keep us posted on how u go.

    cheers!!!
  20. Rsmy59

    Rsmy59

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    St. Louis, MO
    Did you get the results of your cat scan? The CFIDS Facebook page posted an article yesterday on gut inflammation and CFS. Here's the link if you're interested in reading it: http://www.nutritionandmetabolism.com/content/7/1/79

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