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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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My story and progress with cfs recovery and treatments used.

Discussion in 'General ME/CFS Discussion' started by richard jarritt, May 29, 2013.

  1. invisiblejungle

    invisiblejungle Senior Member

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    Hi Richard, can you explain in more detail how an ACE inhibitor can reduce sickness behavior? Where did you learn about this approach? I tried searching online but couldn't find much info.
  2. Hip

    Hip Senior Member

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    Thanks very much for posting the details of your ME/CFS recovery. It is always very interesting to read the treatments that lead to ME/CFS recovery.

    It's true that recovery from ME/CFS is much more common after a short bout of this illness than it is after a long period of being ill. This is probably because some viral infections can take many months to get over, and you can have chronic fatigue until the body finally fights off the virus. Some people can develop chronic fatigue from Epstein-Barr virus for many months, for example, but the body eventually fights off this virus on its own.

    Nevertheless, your treatment plan is intriguing, especially the use of non-alcoholic beer, which apparently blocks the inflammatory effects of interferon gamma.

    Has the chemical(s) in beer that blocks interferon gamma been identified? Can you actually buy any beer extract pills that do the same job?
  3. Hip

    Hip Senior Member

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    I am also interested in where you read about this ACE inhibitor approach to treating ME/CFS, Richard. And I'd be interested to know: was there any particular reason why you chose lisinopril, since there are many ACE inhibitors and ARBs to choose from.

    Though I did some Googling, and found the following from Dr David Moskowitz:

    Note: both angiotensin converting enzyme inhibitors (ACE inhibitors) and angiotensin II receptor blockers (ARBs) perform equivalent functions: these drugs respectively block the production or the action of the hormone angiotensin II.

    Note: the Marshall Protocol, which some people use to treat ME/CFS, involves taking the drug Benicar (olmesartan), which is an ARB drug.
  4. richard jarritt

    richard jarritt

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    thanks for you replys Hip and invisiblejungle i like exploring the ideas on this:

    I found various research papers on sickness behavior and the influenence inflammation
    and its singals have on ill people:

    http://www.ncbi.nlm.nih.gov/pubmed/12615196

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501743/

    I saw another paper attempting to use ARB's to treat diseases such as CFS and
    they had mixed results. I wanted to try interfering with this process and seeing if it had an effect on me:

    I used an ACE inhibitor because it was what i could get my hands on, its not easy getting the meds,

    I emailed david moskowitz who said he has used ARB blockers with some success,
    he mentioned losarta, he works for Genomed but who knows what they do as a company.

    I have found that lisinopril gives me a bad dry cough which over the last few days has got
    pretty bad.

    Im considering the stopping using it now as i feel that the Non alcoholic beer is far superior
    as a tool to stop you feeling ill.

    http://www.ncbi.nlm.nih.gov/pubmed/19655312

    When i drink a few bottles of the stuff i can feel the effect is has on my body straight away!
    it is not something that builds up over time, it is a change that is detectable in 48 hours.

    I feel the effect very heavily in my body itself rather then say a cognitive energy.
    As i drink many bottles the 'sick heavy feeling, coming from my muscles and limbs lifts,
    and i am less aware of my body in general, as i usually am far too aware of every inch of
    me at all times, im describing a personal experience here but i wanted to convey why i drink it.

    I dont know if the beer is available in extract form but i usually find the source materials
    better then extracts.

    Its impossible to speculate if the beer can be useful to just me or many but im
    uttterly reliant on the stuff now to keep me well. I guess that it blocks
    part of an inflammatory cycle that occurs in my body but this is purely speculation
    and i have no evidence for this what so ever.



    Hip likes this.
  5. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
  6. Hip

    Hip Senior Member

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    Hops and Polyphenols in Beer

    Reading that study reference you provided, Richard, I would guess that the hops found in beer may be the main factor improving your ME/CFS symptoms. The study says that the hop bitter acids in hops have an anti-inflammatory effect, specifically: they block the TNF-alpha induced production of the cytokine IL-6 (and also inhibit: the transactivation of NF-kappaB, activator protein-1, and cAMP-response element-binding protein).

    In particular, the study found that out of the various hop bitter acids, the alpha acids and beta acids were the most potent in terms of their anti-inflammatory effect (in blocking TNF-alpha induced IL-6, etc), and the iso-alpha acids were less potent.

    Both alpha acids and iso-alpha acids are readily absorbed in the human intestines. However, beta acids are not well absorbed. Ref: here.

    As to the other ingredients in the beer that may also be helping: the study cited above by merylg says that the polyphenols in non-alcoholic beer also reduce inflammation, specifically: these polyphenols reduce the cytokine IL-6. As for the source of these beer polyphenols: "The polyphenols present in brewing come from the grain and, to a lesser extent, the hops". Reference: here.

    So in non-alcoholic beer, both the alpha & beta acids from hops, and the polyphenols from grain, would seem to specifically target and reduce the production of IL-6.

    IL-6 could be a major player in ME/CFS fatigue and brain fog: when IL-6 was experimentally injected into healthy men, it caused fatigue and a reduced capacity to concentrate (ref: 1).

    Hops is available as a supplement, so it might be worth trying good doses of pure hops, to see if this provides the same or better benefits than non-alcoholic beer.


    The Healthy Alpha Acids and Iso-Alpha Acids in Hops

    You can also buy more concentrated extracts of hops in supplements like Swanson Vitamins Perluxan Alpha Acids Complex (in UK see here), which is a standardized hops extract comprising alpha acids and iso-alpha acids in a proprietary blend called Perluxan™.

    Each 500 mg capsule of this Swanson Perluxan contains 150 mg of alpha acids and iso-alpha acids.

    Info on Perluxan Alpha Acids: Anti-Inflammatory Effects: The alpha acids in Perluxan positively affect many pro-inflammatory markers including: prostaglandin E2, COX-1, COX-2, IL-1, isoprostanes, iNOS, nNOS, TNF-alpha, and NF-kappa-B. Antioxidant Effects: The alpha acids in Perluxan are potent antioxidants.


    The Amount of Iso-Alpha Acids In Beer

    The bitterness of beer is measured in International Bitterness Units (IBU).

    A beer with a bitterness of 1 IBU contains 1 mg of iso-alpha acids per liter. IBU values for different lagers, beers and stouts range from 3 to 80 IBU. American lager is 5 to 15 IBU (that is, 5 to 15 mg of iso-alpha acids per liter). Guinness is 40 IBU (40 mg of iso-alpha acids per liter). Bitter is 20 to 25 IBU. Pilsner is 35 to 45 IBU. Reference: here.

    So if we assume say 20 IBU in an average beer, then drinking two liters of this beer a day will provide 40 mg of iso-alpha acids.

    Note that beer contains mostly iso-alpha acids, and only tiny traces alpha acids. This is because alpha acids are insoluble in water, until boiled. During boiling, alpha acids are isomerized and changed into iso-alpha acids, which are much more soluble in water.

    This is unfortunate, because it is the alpha acids which are more potent than the iso-alpha acids as anti-inflammatories. It would thus seem that the Perluxan supplement, containing 150 mg of alpha acids and iso-alpha acids per capsule, should be a more potent anti-inflammatory, compared to the iso-alpha acids obtained from drinking beer.


    Hops From Home Brewing Sellers

    You can also buy hops as a home brewing item, from US sellers here and here. Some UK sellers of hops are here and here.

    Different varieties of brewing hops contain differing percentages of alpha acids and beta acids. The hops that have the most alpha acids appear to be:

    Warrior hops: alpha acid: 15.0-17.0% / beta acid: 4.5-5.5% (cohumulone: 24%)
    Galena hops: alpha acid: 12.5-14.0% / beta acid: 7.5-9.0% (cohumulone: 38-42%)
    Simcoe hops: alpha acid: 12.0-14.0% / beta acid: 4.0-5.0% (cohumulone: 15-20%)
    Chinook hops: alpha acid: 12.0-14.0% / beta acid: 3.0-4.0% (cohumulone: 29-34%)
    Horizon hops: alpha acid: 10.2-16.5% / beta acid: 6.5-8.5% (cohumulone: 16-19%)

    The best choice from the above list is a hops with a high alpha acids percentage, and low cohumulone percentage (such as the simcoe or horizon variety of hops). Sources of the figures: here and here and here.

    There are five main types of alpha acid, which are called: humulone, cohumulone, adhumulone, posthumulone, prehumulone. Humulone is the alpha acid with the health benefits. The health benefits of cohumulone are uncertain, and may be negative. So generally you would want to hops that are high in humulone, and low in cohumulone alpha acids. More info: here.
  7. Hip

    Hip Senior Member

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    Richard

    I have just bought 6 x 275 ml bottles of Beck's Blue non-alcoholic lager, and will drink them all today, as a test. I've drunk two bottles already. This Beck's Blue lager does taste slightly more bitter than the average lager, and I think this may be due to a high hops content, which presumably increases the beneficial anti-inflammatory effects.

    Do you think I will experience any results from this today, or will I have to repeat this 6 bottle dose of lager for a couple of days before I see benefits?


    What beneficial effects should I be looking out for: you mentioned a reduction in the heavy body feeling of ME/CFS, but what about mental fatigue, brain fog, sound sensitivities, etc: are these symptoms also improved, in your experience?
    maryb likes this.
  8. richard jarritt

    richard jarritt

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    Hip: Have just seen your great response, thank you for looking into this subject properly, the information
    youve gathered is great!

    Ive been finding that there is no drop off in the beer potency and works just as well today as when i first started it.

    The order i found the benefits came within were the body related symptoms such as aches, pains, pins and needles,
    muscle burning lifted fairly fast, then over a a few days the mental fatigue, brain fog, sound sensitivities all dramatically
    decreased and those where the ones i wanted some relief from so badly.

    yes i think if you did 6 bottles for 3 days it would produce a noticable difference if it can work for you.
    I hope so very much that it works for you as it does for me.
    I did activity for 5 hours yesterday with no break. Unthinkable even 2 months ago.
  9. taniaaust1

    taniaaust1 Senior Member

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    Sure your issue wasnt vitamin B deficiency? Those symptoms can be how B deficiency manifests. Blood tests checking B levels dont always give an accurate idea of it.
  10. richard jarritt

    richard jarritt

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    Hi Taniaaust: yes in the last 3 weeks i have been taking a drinkable b-vitamin drink but i had blood test
    previously that never showed low levels but as you say perhaps the tests are not very accurate.

    I still need the beer everyday, if i skip drinking it for even 5 hours i start to feel worse again!
  11. maryb

    maryb iherb code TAK122

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    Hip
    Come on its been 3 days since your experiment!!!!!:D Have you been out partying since and no time to post......
  12. Hip

    Hip Senior Member

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    That would nice!

    The only definite thing I have noticed so far, from drinking around 5 x 275 ml bottles of Beck's Blue non-alcoholic lager a day (for 3 days so far), is a great increase in bowel rumbling in flatulence! Though this is a normal reaction to drinking lots of beer. I believe this reaction comes from the less digestible complex sugars and the yeast in beer.

    I have just ordered some Swanson Perluxan Alpha Acids Complex, one capsule of which I would roughly estimate to be equivalent to drinking about 35 bottles of Beck's Blue non-alcoholic lager a day, in terms of the alpha acids content!

    So when this alpha acids supplement arrives, I will see what results high doses of alpha acids bring.

    I am also looking into the polyphenols in beer at the moment.
    beaverfury, maryb and Valentijn like this.
  13. maryb

    maryb iherb code TAK122

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    Hip
    drat and I thought it was going to be a success.....
  14. Hip

    Hip Senior Member

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    I plan to test and re-test this non-alcoholic beer treatment a few times, just to be sure. I think others should try it too, because as we know, most ME/CFS treatments tend to work for some people but not others, so we really need several people testing this non-alcoholic beer treatment. I may just be a non-responder. In any case, I shall reserve judgement on it until I have tested it a few times.
  15. Hip

    Hip Senior Member

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    Just for reference, this webpage lists the polyphenols in beer:
  16. jeffrez

    jeffrez Senior Member

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    Finding all kinds of beneficial things about hops, from reducing TNF-a, preventing liver fibrosis, and inhibiting tumors and even EBV (!).

    The local supermarket only had O'Douls so I got that, can't say if it's just placebo effect, but I thought I felt better almost right away. Might be the small amount of alcohol, or a carb-induced serotonin increase. Today I picked up some Beck's Blue and some Clausthaler, haven't tried the Claust yet, which is supposedly pretty "hoppy," but the Beck's is pretty good and also seems "hoppier" than the O'Douls. Going to keep drinking this stuff and see what happens over time. It's quite a treat, too, after drinking basically only water for the past 15+ years. :)

    Chem Biodivers. 2012 Jun;9(6):1045-54. doi: 10.1002/cbdv.201100233.
    Anti-inflammatory and anti-tumor-promoting effects of 5-deprenyllupulonol C and other compounds from Hop (Humulus lupulus L.).

    Akazawa H, Kohno H, Tokuda H, Suzuki N, Yasukawa K, Kimura Y, Manosroi A, Manosroi J, Akihisa T.
    Source

    College of Science and Technology, Nihon University, 1-8-14 Kanda Surugadai, Chiyoda-ku, Tokyo 101-8308, Japan.
    Abstract

    A new phloroglucinol derivative, 5-deprenyllupulonol C (1), along with four other phloroglucinol derivatives, 2-5, five chalcones, 6-10, four flavanones, 11-14, two flavonol glycosides, 15 and 16, and five triterpenoids, 17-21, were isolated from the female inflorescence pellet extracts of hop (Humulus lupulus L.). Upon evaluation of these compounds against the Epstein-Barr virus early antigen (EBV-EA) activation induced by 12-O-tetradecanoylphorbol 13-acetate (TPA) in Raji cells, twelve compounds, i.e., 1-4, 11-14, 17-19, and 21, showed potent inhibitory effects on EBV-EA induction, with IC₅₀ values in the range of 215-393 mol ratio/32 pmol TPA. In addition, eleven compounds, i.e., 1-4, 6, 11, 12, 14, 17, 18, and 20, were found to inhibit TPA-induced inflammation (1 μg/ear) in mice, with ID₅₀ values in the range of 0.13-1.06 μmol per ear. Further, lupulone C (2) and 6-prenylnaringenin (14) exhibited inhibitory effects on skin-tumor promotion in an in vivo two-stage mouse-skin carcinogenesis test based on 7,12-dimethylbenz[a]anthracene (DMBA) as initiator and with TPA as promoter.
    Copyright © 2012 Verlag Helvetica Chimica Acta AG, Zürich.
  17. jeffrez

    jeffrez Senior Member

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    The hops in NA beers would probably also be beneficial for sleep problems in ME/CFS. It even makes you better looking, is there anything this stuff can't do??? :D

    Br J Psychol. 2013 May;104(2):225-34. doi: 10.1111/j.2044-8295.2012.02114.x. Epub 2012 May 15.
    'Beauty is in the eye of the beer holder': people who think they are drunk also think they are attractive.

    Bègue L, Bushman BJ, Zerhouni O, Subra B, Ourabah M.
    Source

    University of Grenoble 2, LIP, 1251, Av. Centrale, BP47, 38040 Grenoble, France. laurent.begue@upmf-grenoble.fr
    Abstract

    This research examines the role of alcohol consumption on self-perceived attractiveness. Study 1, carried out in a barroom (N= 19), showed that the more alcoholic drinks customers consumed, the more attractive they thought they were. In Study 2, 94 non-student participants in a bogus taste-test study were given either an alcoholic beverage (target BAL [blood alcohol level]= 0.10 g/100 ml) or a non-alcoholic beverage, with half of each group believing they had consumed alcohol and half believing they had not (balanced placebo design). After consuming beverages, they delivered a speech and rated how attractive, bright, original, and funny they thought they were. The speeches were videotaped and rated by 22 independent judges. Results showed that participants who thought they had consumed alcohol gave themselves more positive self-evaluations. However, ratings from independent judges showed that this boost in self-evaluation was unrelated to actual performance.
    maryb likes this.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Wish they made gluten free NA beer! I have never seen any.

    Sushi
  19. jeffrez

    jeffrez Senior Member

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  20. maryb

    maryb iherb code TAK122

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    jeffrez
    okay this is a test - what about non alocholic/gluten free beer

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