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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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2 types of ME/CFS? A short, informal poll

Discussion in 'General ME/CFS Discussion' started by stevesayshi, Jul 9, 2014.

  1. ukxmrv

    ukxmrv Senior Member

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    Not sure if this is very useful poll but here goes

    id you have IBS before or early on in your symptoms? NO.

    Do you have sinus problems? YES

    Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) NO

    Do you have MCS? YES

    If you have tried it, did you get lasting benefit from LDN? Haven't tried it yet
     
  2. taniaaust1

    taniaaust1

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    Did you have IBS before or early on in your symptoms? Dont think so (developed IBS-C MANY years into ME).

    Do you have sinus problems? Not anymore (maybe ME fixed this??)

    Do you have autoimmune disease also? I had complication usually only seen in autoimmune conditions so dr thinks yes.

    Do you have MCS? Yes

    If you have tried it, did you get lasting benefit from LDN? Havent tried.
    .............

    I think you will have an extremely hard time seeing a pattern in the replies.
     
  3. Jenny

    Jenny Senior Member

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    Yes
    No
    No
    No
    No
     
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    No IBS.
    Sinus problems became chronic with ME. Kept to a minimum by OTC treatments.
    No autoimmune disease.
    No MCS. I have had a few mild respiratory hypersensitivities since before ME. My mother’s are worse.
    Have not tried LDN. My doctor suggested it, but I do not have much pain.
     
  5. Ruthie24

    Ruthie24 Senior Member

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    Prior IBS- Yes
    Sinuses- Yes, constant feeling of congestion and post nasal drip.
    Autoimmune- Suspected but no objective proof found yet.
    MCS- Mild
    LDN- Yes, has been very helpful.
     
  6. Snow Leopard

    Snow Leopard Senior Member

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    1.
    No
    2.
    I've always had sinus problems.
    3.
    Not that I know of.
    4.
    No.
    5.
    I've never tried LDN.
     
  7. geraldt52

    geraldt52

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    Interestingly, I can just copy and paste Snow Leopard's reply...

    1.
    No
    2.
    I've always had sinus problems.
    3.
    Not that I know of.
    4.
    No.
    5.
    I've never tried LDN.
     
  8. Mij

    Mij Senior Member

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    From reading posts on this forum it seems LDN helps those with pain. I never had pain so this could be why it had no affect on me.
     
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  9. Valentijn

    Valentijn Activity Level: 3

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    No
    Yes
    No
    No
    Haven't tried
     
  10. Snow Leopard

    Snow Leopard Senior Member

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    You see, when I posted my reply I was going to say I can't see a pattern yet, but now you are all posting the same answers as me, well... :nervous:
     
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  11. ahmo

    ahmo Senior Member

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    Did you have IBS before or early on in your symptoms? Y

    Do you have sinus problems?
    Y (No longer)

    Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded)
    Y

    Do you have MCS?
    pretty reactive, but not full-on MCS

    If you have tried it, did you get lasting benefit from LDN?
    Just started yesterday
     
  12. Tammy

    Tammy Senior Member

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    1 thru 4 = NO.............haven't tried LDN
     
  13. stevesayshi

    stevesayshi

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    Thanks everyone for the replies! I wrote this after doing a bunch of research on a "good" day and then have had a few bad ones after that. "Old me" would do a detailed statistical analysis blah blah blah but "new me" can't handle that. So let me tell you what I thought of.
    (I am no longer quite sure that MCS fits into this picture as it's not really an allergy thing)
    I found that it is the Th17 branch of the immune system, not the Th1/Th2 branches, that is the current focus of much research in autoimmune disease. Th17 is the mucosal barrier branch i.e. it is of paramount import in the gut. I am not feeling up to putting all the links together but you can google search Th17 (and/or IL-17) to find research connecting it to

    And probably more that I have now forgotten.
    There's a short thread on Th17 here:
    http://forums.phoenixrising.me/inde...e-expression-profiles-in-post-mono-cfs.19365/
    with the suggestion that Th17 is lowered in ME/CFS. However I strongly doubt that is the case for all of us. I suspect that the two main branches are
    Overactive Th17 possibly simulated by past or ongoing infection
    Suppressed Th17 probably due to ongoing infection - retroviruses for instance do this
    I believe Th17 is the main defender of the sinuses so that's why I included that. Not sure what I was really thinking about the MCS.

    So I thought there would be a lot of all "yes"es or all "no"s. And there kinda... were... I guess, more than random it looks like... If I have another good day I will come back to check.

    Personally, I can look back at my life and pinpoint the moment I first had "depression" (though my mood wasn't really depressed! My behavior was!) It was post-EBV. I never fully recovered and I suspect part of the reason was an upregulation/sensitization of that branch of the immune system.
    LDN downregulates Th17. I suspect all the monkeying around with the opioid receptors is a side show as dextronaltrexone, the right handed isomer (ya know, the d- in d-ribose vs the l- in l-carnitine) doesn't block opioid receptors but rather...
    It blocks the "LPS receptor" (toll like receptor 4) on microglia! And it produced the SAME improvement in fibromyalgia as mixed LDN (regular naltrexone has both l- and d- halves but only the l- blocks the opioid receptor).

    (LPS = that nasty stuff gut bacteria can make that's super inflammatory... which is why so many feel better from not eating probably, and why total parenteral nutrition helped a couple people get better:
    http://forums.phoenixrising.me/index.php?threads/does-anyone-feel-better-when-they-dont-eat.9096/ )
    In fact, I can even identify (maybe) the reason some people get worse on LDN, it seems that the regular version increases(!!!) TLR4 expression
    http://www.ncbi.nlm.nih.gov/m/pubmed/22240038/
    So you may have to build up your own endorphins enough to counter the worsening effect that the regular naltrexone has! If, that is, LPS activation of microglia is a big part of your problem.

    Now, what else works to lower Th17/IL-17 (or increase T reg, the yin to Th17's yang)? I found a bunch of things and forgot to write them down but here are a few
    • Cannabidiol (CBD) ... something of a pipe dream but it would probably be huge because it blocks microglia too
    • N-acetylglucosamine (@Hip 's old favorite, if he wrote this it would be much better with full citations:D)
    • Resveratrol
    • Circumin
    • Ursolic acid (I am very interested in this one, it helps build muscle too but has poor oral bioavailability)
    • Zinc
    • Vitamin D
    • Retinoic acid (oxidized firm of vitamin A)
    • DHA
    • Berberine
    • ECGC
    • Better sleep
    • Less stress

    OK, I am not saying this is the whole story by any means. Just another possible piece of the puzzle. If you want to run with it, great, let me know how it goes. I'm gonna buy some ursolic acid spray, or maybe some powder and make a liposomal version.

    Also, yeah, I'm not *that kind* of doctor, so who knows...
     
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  14. SDSue

    SDSue Florida

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    Can you describe what overactive Th17 looks like, vs under active Th17? Are there different symptoms?

    Is IBS common during the early overactive phase and then goes away as Th17 becomes suppressed?

    Are you thinking Th17 status would be a predictor of success with LDN? Thanks!
     
  15. Hip

    Hip Senior Member

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    @stevesayshi
    I did some experiments a while ago, taking a whole set of Th17 inhibitor supplements to see what effect this would have. In my case, I saw no benefits after a week on this regimen, and I also found I became more irritable as a result of the regimen, so I stopped it. However, it may certainly be worth trying some anti-Th17 supplements.

    In case it is of use for you, here is the list of anti-Th17 drugs and supplements I compiled:

    Anti-Th17 Drugs and Supplements

    Green tea extract EGCG inhibits the differentiation of Th17 cells. 1
    N-acetylglucosamine inhibits Th1 and Th17 responses. 1
    Methylprednisolone has a suppressive effect on Th17 cells. 1
    Simvastatin inhibits IL-17 and Th17. 1
    Galactoxylomannan, a polysaccharide from opportunistic fungus Cryptococcus neoformans, inhibits IL-17A and Th17. 1
    Interferon alpha down-regulates IL-17 expression and Th17 differentiation in vitro and in vivo. 1
    Interferon beta inhibits human Th17. 1
    Etanercept downregulates the Th17 pathway. 1
    Propolis inhibits the differentiation of Th17 cells. 1
    Ursolic acid blocks stat3, and the inhibition of Stat3 activation blocks Th17 activation while promoting Th1 or cell mediated immune responses. 1 • Ursolic acid can be obtained as the supplement: Ursobolic made by E-Pharm.
    Zinc suppresses Th17 development via inhibition of STAT3 activation. 1
    Digoxin (from foxglove, Digitalis lanata) and its derivatives suppress Th17 cell differentiation. 1
    Telmisartan inhibits Th17 differentiation. 1
    Valsartan. Th17 cells increased by angiotensin II, so angiotensin II inhibitors like valsartan might reduce Th17.
    Vitamin D suppresses Th17 cytokine production. 1
    Vitamin D plus a TNF inhibitor will reduce Th17. 1
    Vitamins A and D synergistically Suppress the Development of Th17 Cells. 1 2
    Retinoic acid inhibits Th17. 1 Beta carotene a precursor of retinoic acid. 1
    Calcipotriol (vitamin D analogue) suppresses Th17. 1
    Baicalin inhibited Th17 cell differentiation.1
    Grape seed extract reduces Th17 / Treg ratio. 1
    Triptolide, from the herb Tripterygium wilfordii, inhibits the differentiation of Th17 cells. 1
    Cordyceps sinensis increases regulatory T cells to Th17 cell ratio. 1
    Fucoxanthin (found in brown seaweed) induces regulatory T cells and inhibits Th17 cell differentiation in vitro.1 Fucoxanthin can be bought as a supplement.
    Berberine suppresses Th17 and Th1 T cell differentiation in type 1 diabetic mice.1
    IDO (indoleamine-2-3-dioxygenase) activates T regs and blocks Th17 cells. Tryptophan inhibits IDO.
    Restricting proline reduces Th17 cell differentiation. Foods highest in Proline
    Intermittent fasting might be helpful - it increases the amino acid starvation response (= amino acid response pathway, AAR), which then reduces Th17.
    Segmented filamentous bacteria (Candidatus Savagella) in the gut increase Th17 cells.
    Olive leaf extract reduces IL-17 (and presumably therefore Th17). 1


    Note: blocking IL-6 inhibits Th17 (so IL-6 blockers like luteolin might inhibit Th17). Chocolate boosts IL-6.
    Note: psoriasis is a Th17 mediated skin disease.
    Note: The complement system drives Th17 cell differentiation and triggers autoimmune arthritis. 1
    Note: Candida albicans is a potent inducer of the Th17 response. 1
     
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  16. stevesayshi

    stevesayshi

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    I don't know about symptoms to be honest, aside from gut inflammation and a propensity toward other autoimmune disease. Of course, there is a test for $200:
    http://www.truehealthlabs.com/mobile/Product.aspx?id=38430

    To answer your next question that is what I would expect.

    And lastly, yeah, I think that is the reason LDN works.

    Wow I knew you wouldn't disappoint! Is it possible too many of those are MAOi's and that made you irritable? I would imagine it takes quite a while for any autoantibodies to go into stasis or whatever it's called.

    IL-23 might be another viable target as it maintains the Th17 line. IL-23 monoclonal antibodies have been extremely effective in psoriasis trials but I can't find anything OTC that helps with that, though a few things that increase it (e.g. A number of mushrooms).
     
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  17. SOC

    SOC Senior Member

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    I'd be interested in things that increase Th17 and/or Th23 as I have very few of both.
     
  18. Hip

    Hip Senior Member

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    You may be right that you'd need to take the anti-Th17 protocol for longer (like a month or two) before you start seeing some benefits. The anti-Th17 protocol I took consisted of the following supplements (mainly because I happened to have these particular supplements already at home):

    Anti-Th17 protocol:
    N-acetyl-glucosamine 750 mg
    Propolis 5000 mg
    Vitamin D 10,000 IU
    Cat's claw (15:1 extract) 100 mg (cat's claw is a potent TNF-alpha inhibitor)
    Vitamin A 25,000 IU (to boost retinoic acid)
    Ursobolic® (ursolic acid) 100 mg
    Chinese skullcap 1600 mg
    Green tea extract 600 mg

    The only reason I experimented with this anti-Th17 protocol was because I got such good results from taking N-acetyl-glucosamine (NAG) for my anxiety symptoms and sinus inflammation symptoms, and since NAG reduces Th17 responses, I thought I would try to further reduce my Th17 immune response with a set of supplements. Th17 drives autoimmunity.

    NAG suppresses the damaging autoimmune responses seen in multiple sclerosis and type 1 diabetes mellitus.

    But to reiterate, it probably true that you would need to follow an anti-Th17 protocol for some months to see benefits, as autoimmunity may take a while to subside.

    Maybe such an anti-Th17 protocol might be more helpful for ME/CFS patients that have many allergies and chemical sensitivities (I don't have this myself). Th17 has been linked to allergic disorders. And also allergic disorders and autoimmunity are very closely linked, since it is possible to classify autoimmune diseases by corresponding type of allergic hypersensitivity.


    Dr Lipkin I believe suggests that it might be a good idea to use immunomodulators to reduce the IL-17 response in ME/CFS (though he says more research is needed before this advice can be given).

    Though IL-17 is apparently only high in new ME/CFS patients; IL-17 is reduced in patients who have had the disease for 3 years or more.

    So it may be that people who have had ME/CFS for some time are in a different situation regarding Th17 and IL-17.

    This study found that a mutation which lowers the inflammatory effects of IL-17F was found significantly less in ME/CFS patients, suggesting that this mutation might confer protection against ME/CFS, and also suggesting that the inflammatory effects of IL-17F may play a role in driving this disease.


    An interesting article: Role of Th17 in Neuroimmune Disorders.
     
    Last edited: Jul 14, 2014
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You could have made this an actual poll with boxes to tick - did you know? Then it shows you the scores without you having to work them out.

    Anyway:

    Did you have IBS before or early on in your symptoms? Before, and continuing until changed diet

    Do you have sinus problems? Yes but better after dietary change

    Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) not that I know of

    Do you have MCS? only sensitive to artificial perfumes

    If you have tried it, did you get lasting benefit from LDN? not tried
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hip likes this.

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