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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Cured Myself After 4 Years of CFS

Discussion in 'General Treatment' started by xks201, May 27, 2012.

  1. xks201

    xks201 Senior Member

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    Lol the mitochondria are refreshed everyday. Their state is a result of what is going on in the rest of the body. If you find someone who cured themselves by boosting mitochondria let me know.
    Beyond likes this.
  2. xks201

    xks201 Senior Member

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    Inflammation.... Hormone deficiencies... Genetic problems like high levels of angiotensin 2....high levels of acetylcholine.... Gut inflammation destroying nts and hormones. Gotta stop the sympathetic stimulation to get the vagus nerve under control with losartan and or a tricyclics antidepressant at a very low dose in some cases.
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    ?:thumbdown:?

    You do have to use supplements and good diet for the mitochondria when very ill for a long time.That is not really funny to me when they are not working for many people.
    Adlyfrost likes this.
  4. dannybex

    dannybex Senior Member

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    They are "refreshed" everyday, perhaps if they all the nutrients, proteins, glucose, vitamins, minerals, and none of the things that may suppress their production -- like high omega 6 foods, environmental toxins (pesticides, fungicides, chemical exposures...) etc..

    The mitochondria are only one part of the picture, but to suggest that they're just 'refreshed' every day defies common sense. If you can find a link that proves otherwise with regards to chronically ill folks with CFS/ME, then let me know.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I was diagnosed with CFS and I would rather use the acronym CFIDS. I think CF sounds much worse.;)

    GG
  6. dannybex

    dannybex Senior Member

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    I've always thought it should be called CIDS...just leave out the F, in more ways than one. :)
  7. Timaca

    Timaca Senior Member

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    xks201 likes this.
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Oh, I like it. Your smarter than a 5th grader, or many CIDS patients with brain fog and exhaustion! (PEM).

    GG

    PS That F has really F'd us!
    heapsreal and Valentijn like this.
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    She isn't cured but doing VERY well. I have read about her progress and have learned a lot about the Mitochondria from her book and that prompted me to learn even more. Very good book. I love that diet but I also believe strongly in the supplements that help the mitochondria also.

    Would be HANDY if they did refresh themselves easily in everyone. :)
    Timaca likes this.
  10. Timaca

    Timaca Senior Member

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    Sallysblooms~ I'm inspired by your story as well. In the near future, I hope to pay closer attention to what you've taken supplement wise and see if they might help me.

    For now, I've recently added curcumin (to help with the viruses), selenium will be added today (to help with Coxsackie B4) and then I hope to add a B-complex next week.

    Is there something that stands out to you in her book Sallysblooms? I've recently bought it and am reading through it now.

    Best, Timaca
    Sallysblooms likes this.
  11. roxie60

    roxie60 Senior Member

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    I have, majority were very low. my SAMe is low
  12. triffid113

    triffid113 Day of the Square Peg

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    I guess here is as good as anywhere. I just stumbled across this at lef.org and thought it may be of interest here:

    http://www.lef.org/magazine/mag2010/mar2010_Reduce-Blood-Pressure-Naturally_01.htm
    Say Goodbye to Fibromyalgia

    Fibromyalgia causes many aging women (and some men) to suffer chronic and debilitating muscle pain. Conventional medicine offers little in the way of effective relief.
    Dr. Lichten treats fibromyalgia by first restoring healthy sleep patterns and then identifying the anabolic hormones that are so often deficient. By combining solid nutritional therapy with optimal anabolic hormone balancing, Dr. Lichten has seen dramatic recoveries in patients who had lost all hope.

    ---

    Curious as to what else lef had to say, I found this article in which a single fibromyalgia patient is "greatly benefited": http://www.lef.org/magazine/mag2005/jul2005_ch_02.htm (This is by the same doctor, Dr. Sergey A. Dzugan, running clinical trials to show that hormone replacement normalizes cholesterol). More details about this single case: http://www.lef.org/magazine/mag2005/jul2005_ch_01.htm

    Life Extension's CFS protocol (notto cure but just to improve): http://www.lef.org/protocols/immune_connective_joint/fibromyalgia_07.htm

    http://www.lef.org/magazine/mag2012/oct2012_Restoring-Cellular-Energy-Metabolism_02.htm
    Fibromyalgia

    Fibromyalgia (FM) and chronic fatigue syndrome are conditions that often occur together and are believed to have a similar underlying cause.28
    There's accumulating evidence that defective production of ATP is the culprit.28-30 These findings make d-ribose a natural candidate as a therapy for those suffering from fibromyalgia and chronic fatigue syndrome. A published case study showed that a woman with fibromyalgia experienced a decrease in symptoms following supplementation with d-ribose.31 The patient had been unresponsive to prior medications, and her physicians based their decision on the known energy-enhancing capabilities of d-ribose.
    A larger study soon followed enlisting 41 patients with fibromyalgia or chronic fatigue syndrome.28 Subjects took 5 grams of d-ribose three times daily until they reached a total of 280 grams.
    There was significant improvement in all five categories on a standard score: energy, sleep, mental clarity, pain intensity, and well-being.28 On average, patients reported a 45% increase in energy levels.
    While fibromyalgia and chronic fatigue syndrome remain complicated and perplexing to scientists, these findings offer real hope for a solution.

    http://www.lef.org/magazine/mag97/april-report97.htm
    Fibromyalgia

    Fibromyalgia is one of those mysterious syndromes that can either occur by itself, or accompany other diseases such as lupus and chronic fatigue immune dysfunction syndrome. The main feature of fibromyalgia is persistent pain-not necessarily in the joints, but deep in muscles-that occurs for no apparent reason. The symptoms of fibromyalgia include tenderness at several points of the body. In addition, people with fibromyalgia frequently have fatigue, sleep disturbances, numbness, joint swelling, and other symptoms. It is often treated with tricyclic antidepressants.
    It has been suggested by several researchers that SAMe might be a good substitute for tricyclic antidepressants for the treatment of fibromyalgia. Several studies have proven them right. In a study in the Scandanavian Journal of Rheumatology, 800 mg of SAMe per day for six weeks improved "clinical disease activity", pain, and morning stiffness. Mood improved when measured by the Face Scale, but there was no signficant improvement on the Beck Depression Inventory.

    An earlier study did find, however, significant improvement on the HAM-D and the Scala di Autovalutazione per la Depressione in 11 of 17 fibromyalgia patients taking SAMe.

    Another study compared SAMe to transcutaneous electrical nerve stimulation (TENS). Fifteen patients with primary fibromyalgia were given one 200 mg injection of SAMe in the morning, plus a 200 mg tablet at noon and in the evening. The study lasted 6 weeks. During the first 2 weeks, patients in the SAMe group had a significant decrease on two depression scales. During the last 2 weeks, a significant reduction on a third scale occurred. The TENS patients did not do as well. But when 5 of them switched to SAMe, their depression scores also decreased. No side effects were reported.

    A study published in Current Therapeutic Research found that a 200 mg injection of SAMe plus 400 mg orally twice a day significantly decreased depression in fibromyalgia patients beginning on day 7. This coincided with a decrease in physical symptoms.

    http://www.lef.org/magazine/mag97/sept97-report.htm
    Fibromyalgia

    Fibromyalgia is a kind of mystery disease. No one knows what causes it. The basic symptoms are pain in muscles and bones, plus fatigue. Other symptoms include disturbed sleep and depression. Doctors diagnose it by pressing on various parts of the body. Lab tests for fibromyalgia can look perfectly normal unless special muscle testing is done. Fibromyalgia can occur by itself or as part of another disease. The Arthritis Foundation considers it a type of arthritis.
    In 1987, a double-blind, placebo-controlled study was done on 17 people with fibromyalgia not complicated by any other disease. Five participants had suffered from it for 10 years or longer. Researchers found that SAMe reduced pain and caused no major side effects.
    In a study published in the Scandinavian Journal of Rheumatology, 44 fibromyalgia patients took 800 mg of SAMe for 6 weeks. Results showed that SAMe reduced pain at the tender points, as well as fatigue, morning stiffness and resting pain. Being free of pain apparently put people in a better mood: they chose more "happy faces" in psychological tests.

    Results of treatment
    with SAMe for
    Fibromyalgia
    IMPROVED
    • Tender Points
    • Morning Stiffness
    • Resting pain
    • Fatigue
    (Adopted from Jacobsen, et al.)

    http://www.lef.org/magazine/mag2003/sep2003_report_creatine_01.html
    Creatine and chronic fatigue/fibromyalgia
    Because of creatine’s apparent abilities to improve the symptoms of other pathologies involving a lack of high energy compounds (e.g., congestive heart failure, etc.) as well as the aforementioned afflictions outlined in the introduction to this article, it has been suggested that creatine may help with chronic fatigue syndrome and fibromyalgia (some researchers now posit that they are in fact the same syndrome). Although the causes of both pathologies is still being debated, a lack of high energy compounds (e.g. ATP) at the level of the mitochondria and general muscle weakness exists. For example, people with fibromyalgia have lower levels of creatine phosphate and ATP levels compared to controls.4 No direct studies exist at this time showing creatine supplementation improves the symptomology of either chronic fatigue or fibromyalgia. Considering, however, the other data that finds that creatine supplementation increases creatine and ATP levels consistently in other pathologies where low levels of creatine and ATP are found, it stands to reason that people suffering from either syndrome may want to peruse the use of creatine. Another similar syndrome to chronic fatigue and fibromyalgia, is Multiple Chemical Sensitivity Syndrome, which may also be potentially improved by the use of creatine supplements, though more research is clearly needed.

    http://www.lef.org/magazine/mag2012/oct2012_Restoring-Cellular-Energy-Metabolism_03.htm
    studies perhaps worth looking into:
    28. Teitelbaum JE, Johnson C, St Cyr J. The use of D-ribose in chronic fatigue syndrome and fibromyalgia: a pilot study. J Altern Complement Med. 2006 Nov;12(9):857-62.
    29. Eisinger J, Plantamura A, Ayavou T. Glycolysis abnormalities in fibromyalgia. J Am Coll Nutr. 1994 Apr;13(2):144-8.
    30. Le Goff P. Is fibromyalgia a muscle disorder? Joint Bone Spine. 2006 May;73(3):239-42.
    31. Gebhart B, Jorgenson JA. Benefit of ribose in a patient with fibromyalgia. Pharmacotherapy. 2004 Nov;24(11):1646-8.

    http://www.lef.org/magazine/mag2002/dec2002_medup.html
    1. Coenzyme Q10, ginkgo and fibromyalgia
    A study evaluated whether anecdotal claims of benefits from coenzyme Q10 and ginkgo in those with fibromyalgia could be substantiated. Participants received 200 mg of coenzyme Q10 and 200 mg of ginkgo biloba extract daily for 84 days. Their quality of life was evaluated by well-validated questionnaires that measured seven different subjective responses, after 4, 8 and 12 weeks. The quality of life scores showed progressive improvement during the study period and at its completion. There was a significant difference of scores from the start to the end. In the self-rating criteria, 64% claimed to be better, compared to 9% feeling worse. Any adverse effects were noted as being minor. Thus, coenzyme Q10, and ginkgo biloba improved the quality of life of those with fibromyalgia.
    JOURNAL OF INTERNATIONAL MEDICAL RESEARCH, 2002, Vol 30, Iss 2, pp 195-199
    ----
    Here is an article f of someone who is able to keep going with CFS withe the listed supplements including a new one on me: cetyl myristoleate http://www.lef.org/magazine/mag99/dec99-profile.html (The rest of her supplement list souds pretty wimpy (inadequate).

    http://www.lef.org/magazine/mag2002/feb2002_report_acam_01.html
    When tissues don't receive sufficient blood, the cells are starved for oxygen and nutrients. Pain can result, as in headache or fibromyalgia.
    ...

    Hypercoagulability can be easily detected through the use of the well-known "sed-rate" blood test. Sed rate of less than 5 indicates hypercoagulability. ...
    Virus infections have been singled out as particularly likely to provoke excess fibrin production. This fibrin accumulates in certain places, creating a "fibrin block" that impedes blood flow and deprives a certain area of the body of sufficient oxygen. Ryser said that she finds a history of two to six serious infections per every chronic fatigue patient.
    etc. for means of increasing blood flow.
  13. triffid113

    triffid113 Day of the Square Peg

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    Someone here who has successfully treated her CFS and gone on to get a job and lead an active life is Velha. She followed Freddd's protocol, tweaking it until it worked for her. The tweaks that worked for her: she has to take high dose l-carnitine-fumarate (Drs. Best, other brands don't work) - about 5g/day. She also has to treat her gut with olive leaf extract+garlic+oil of oregano and says probiotics made it worse. She started a slow titration up because she was very sensitive to Freddd's protocol and it was 3 months before she started to have results, 7 months before she was well enough to resume her life. The dose of olive leaf extract she takes is 300 mg. I personally treat my gut with ONLY olive leaf extract, but at a 1g/day dose, and that is all need.
  14. physicsstudent13

    physicsstudent13 Senior Member

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    what does losartan do? does it really repair smoking damage to the lungs? I took it and began to feel faint and tired it was terrible because of low oxygen I think.
    I think Losartan is bad if you have normal blood pressure because when combined with other meds it can dangerously lower blood pressure and as a result oxygen levels to your brain and other organs. it is being studied for COPD so I was hopeful it might help my exhalation asthma problems
    Last edited: Apr 11, 2014
  15. Adlyfrost

    Adlyfrost

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    @xks201 Not to get personal, but I bet you are not female- if you are, my apologies. I have never heard of a female being cured by getting hormones and sympathetic fight or flight response in control. You know that statistically women are harder to treat anyway. I imagine there are innumerable reasons why.

    I am interested in what gut measures you recommend though besides avoiding lactic acid bacteria. . I also think the sooner one nips this thing in the bud the better chance for a complete remission. You only had this for 4 years, thank God, and I am glad you have a handle on it for yourself. My symptoms started at puberty and I am now 42.

    There have been many points in my life when I thought I had a handle on this and soon after I found myself sicker than I ever was before in my life. First thing I would write in my ebook is that there is to date, no cure. I am from the viral school or origins. I believe a virus (which resides primarily in the gut tissues) hijacks cellular DNA in multiple systems of the body, esp. the immune system and causes either directly or indirectly all these awful symptoms that SOC listed in a previous post.

    So really I am not interested in your theories of pathways and hormone interactions or ways to gain mind over matter. I want this sucker eradicated at the source: the virus. I am interested though in any treatments you feel were helpful.
    Last edited by a moderator: Jun 20, 2014
  16. xks201

    xks201 Senior Member

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    Before we go into fancy quantum mechanics and apply the law of relativity and overcomplicate the hell out of this to solve a set of symptoms that apparently describe a diagnosis (CFS) or invent a virus like every doctor loves to do when they are too lazy or stupid to look further into the causes of fatigue - let's agree upon the fact that not all causes of chronic fatigue are the same. There are thousands if not more enzymes in the body, many of which are influenced by genetic mutations. One mutation for example can affect those enzymes causing you to for example, not efficiently convert a b vitamin to its coenzyme form. There are not any tests really to prove that you are deficient in a coenzyme form of a b vitamin unfortunately (medicine is still in the primordial era).

    Before you go on about some exotic virus that apparently explains everything in everyone but no one can cure or describe ...what hormone panel tests have you done? What nutrition panel tests have you done?

    I'm not worried about the gut as much as the above because the above responds to increasing energy in the body through solving the metabolic errors of metablism that may or may not be induced by a pathogen or genetics. Hormones are the same. If you are over 40 and not on any hormones not even DHEA odds are you are deficient in one of them and thus burning the candle at both ends.

    Without tests and experiments (high dose coenzyme form of each b vitamin) we cannot come to a cure or even remotely describe the problem. I'm not in favor of trying to describe a set of symptoms by one exotic virus or even one cause that mysteriously explains everyone's cfs yet has no proof of its existence.

    I've seen plenty of women helped a ton with hormones. Optimization of hormones will help you too. You could have had a head injury or had something happen where your pituitary is not functioning optimally, especially considering you recognized the symptoms at puberty.

    I would need to know your 3 estrogen levels, your IGF-1, testosterone, DHEA, free t3, and AM cortisol numbers to start. If you don't have those tests it would behoove you to get them. Then when you have those, I would trial high doses of a coenzyme b vitamin supplement (such as Jarrow B Right) say 5 pills or so with extra riboflavin 5 phosphate and P5P(300mg). Thorne makes riboflavin-5-phosphate and I would try 2 pills with the rest of the concoction. No one has died of a b vitamin overdose. Read this study for a perspective on the potential vitamin experiments I'm getting at http://www.ncbi.nlm.nih.gov/pubmed/23379830 .

    What is your vitamin D and B12 level?

    If any of you want to solve this quandry you need data and a logical process of elimination before you spend thousands seeing Kenny D or some doc that puts you on a miracle antiviral or antibiotic that ends up leaving you feeling just as crappy as when you started.

    Do you even take a multivitamin?

    I used credit cards to finance these tests when I had no job and was too sick to function or I borrowed money from family.

    Do you have frequent high volume urination (more than you drink)? Do you have chronically low blood pressure?

    In diseases of chronic fatigue the most common things we are dealing with are hormone deficiencies and genetic defects of b vitamin metabolism combined with potential vitamin d deficiency. Those issues are way to complicated to solve with a probiotic.
    Last edited: Jun 21, 2014
    golden likes this.
  17. Adlyfrost

    Adlyfrost

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    @xks201 : I used to take coenzymated B's several times a day- country life brand to help cope in the heat and sun of FL, where I had mild flu symptoms year round. I was also on a ton of vitamins including multi-vitamins. They did help when I lived in Florida somewhat but when I moved to NJ and got in the cold, I started getting unbearable nausea. I thought I had parasites and started treating for them and the nausea improved.

    Then, in the NJ winter, I had my first ever oral herpes break out (@40). Then I had flu-like symptoms that came back worse than I had ever had them before, which seemed to come out of nowhere. These symptoms behaved exactly like a virus- chills, nausea, weakness, pain that moved around. When my symptoms were acute (fever, horrible pain, moaning all night with writhing stomach pain) I would swear I had a bad bout of the flu- but the thing wouldn't go away- like for months.

    So how did I get rid of viral-like symptoms and the lip sores? I stopped fertilizing my gut with supplements for a start. It went against everything I had read about wholistic health. The more I tried to starve the virus and heal my gut, the better I felt. I realized I had 2 separate health needs: normal (hormones, heart-health, bone health, etc) and Viral health. Vitamins might be good for my hormones but hormones had very little to do with those flu-symptoms I kept having, and everything to do with what I was putting down my pipes.

    I agree not everyone's CFS is caused from a virus but from what I have read on this forum, I believe a great majority of the cases are. I can say with 100% certainty mine is. However, the regimen that I am on now (which is working btw) is horrible for my hormones. The problem with hormones supplements is that I am so hyper-sensitive to so many things. I was on a low dose natural progesterone from a reputable compounding pharmacy for 3 weeks and my tongue turned white and I felt mentally horrible.

    Iron, which is much needed for hormones, esp. in women (and before my CFS progressed I was taking quality iron, Vit D, multi-mins, coenzymated vitamins with black pepper extract.... the whole wholistic program)- anyway, iron feeds gut bacteria and viruses. So now I only take co-enzymated vitamins and iron once in a while- like in shots- not literal shots but short-term heavy doses- usually during my period. I sometimes get viral symptoms back afterward but I can't let my body rot while I deal with this virus.

    Well that is a brief snapshot of my story. I wish I could treat my body and get rid of the virus at the same time. I also have severe scoliosis. Exercise has gone by the wayside to fight the virus too, which is bad for me. Thank God for my Spinecor brace. But at least right now I am alert, feeling pretty energetic, not sick, not in bed, sleeping less than 10 hours most days and that is something to be thankful for.
    Last edited: Jun 22, 2014
  18. Adlyfrost

    Adlyfrost

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    @xks201 Btw, I had an anemia panel done when my symptoms were pretty awful a few years ago. My B12 was through the roof- probably from all the methylcobalomin in my multi-vitamin. My doc couldn't believe it. So I know the B12 WAS getting absorbed.

    Also, I have never taken an anti-viral pharmaceutical in my life- mainly because I am afraid of the side-effects. All the anti-virals I have experimented with are natural, and unless I am gravely ill, I never take antibiotics. The only thing I bum off my doctor is oral nystatin, which has been at times, invaluable in my recovery.

    I have been dealing with this in varying degrees since puberty- I know it is a virus for me, and as long as I treat it like a virus / autoimmune disease of the gut, I have success. Vitamins can give me a little boost sometimes- and perhaps that is all it took with you, but I need much more.
    Last edited: Jun 21, 2014
    golden likes this.
  19. Adlyfrost

    Adlyfrost

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    Also, I rarely take probiotics. I just haven't found them personally to be very helpful for the gut so I save my money for more useful things.
  20. xks201

    xks201 Senior Member

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    If your treatment is working for you keep doing it. The specific hormone tests I have mentioned are absolutely necessary for anyone in my opinion. Viruses can partially or completely destroy endocrine glands. I have seen it happen. I also had a high b12, and it was most likely because the b12 was not entering the cells and converting. Excessive/imbalanced gut bacteria can oversynthesize it too. I don't believe a majority of CFS cases are simply viruses. If they are all viruses then they would all respond to anti virals but I see very few people benefit long term from pharmaceutical anti viral meds.

    You can see here that b vitamin stimulated enzymes are low in all of these CFS patients. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297139/
    For me a simple coenzyme b vitamin formula does nothing. The relative amounts in one or two pills is too small to stimulate these enzymes. I take 150-300mg p5p, 70mg riboflavin 5 phosphate, one niacin pill, a lot of biotin to stimulate the biotin transporters, some thiamin, one folinic acid pill (folic acid derivative with 4mg folinic acid). These are the kinds of doses a CFS person would need to see any benefit really. They require buying individual bottles of each. I assume there absorption issues or genetic defects of vitamin or hormone metabolism in most people with CFS. Here is another study potentially supporting my latest research in my signature. http://www.ncbi.nlm.nih.gov/pubmed/8213873
    Last edited: Jun 22, 2014
    Adlyfrost likes this.

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