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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. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
    Is 'pipe dream' a pun? :D

    It's actually legal so why not try it:

    http://forums.phoenixrising.me/index.php?threads/cbd-oil-anyone-tried-it-its-legal-now.27487/

    Interesting ideas BTW. I'm already using some of the things listed. No way could I afford them all!

    Maybe the poll should have included a question about pain, as this may be crucial to identifying the subgroups.

    I am one of the lucky ones not to have pain.
    Mij likes this.
  2. Graeme

    Graeme almost there...

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    1. yes
    2. inflammation of mucous membranes. few acute infections
    3. yes, ankylosing sponydlitis
    4. yes but it's masked for the most part as long as I don't practice extreme mold avoidance
    5. yes

    I look forward to your theory.
  3. stevesayshi

    stevesayshi

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    Hi @Graeme, thanks for your response. My hypothesis (it doesn't merit theory status just yet) is that in some cases, such as yours and mine, the Th17 (gut / mucous membrane, mainly) branch of the immune system is overactive (all yes responses). In other cases, the branch is severely downregulated (all no responses). This is a really new area of research in autoimmune disease yet early results confirm it to be the case in nearly every major disorder.

    I came across an old post of yours talking about TPN which proposes something very similar just using different language. The only thing this hypothesis suggests is that some people will benefit from a set of treatments that will be very negative for others, which we already know is true. So many systems are in play (mitochondria, methylation, etc.) that must be fixed. One can't simply reverse the cause of the disease in most cases as all the collateral damage has to be swept up as well.

    By the way, I checked, and artesunate downregulates Th17... (you can go back a page to see a longer post, and @Hip kindly added some supplements and drugs I had missed - Speaking of which, colostrum is widely touted as a highly effective remedy for leaky gut, yet it contains lots of "proline rich peptides" so I don't know how straightfoward any of this can possibly be)

    @MeSci thanks, I actually have used it. I wish I had the wherewithal to make puns ;) Anyway, I find LDN to be more effective, but CBD tincture really helped me through a rough patch. I would be interested to try the pure "molecular" CBD as it can be used in very high doses.
    Graeme, Sidereal and MeSci like this.
  4. Keela Too

    Keela Too Senior Member

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    N.Ireland
    Did you have IBS before or early on in your symptoms? yes

    Do you have sinus problems? no

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

    Do you have MCS? no

    If you have tried it, did you get lasting benefit from LDN? not tried
  5. SDSue

    SDSue Florida

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    Florida
    Did you have IBS before or early on in your symptoms? Yes, severe

    Do you have sinus problems? Yes

    Do you have autoimmune disease also? Yes

    Do you have MCS? Yes, mild

    If you have tried it, did you get lasting benefit from LDN? Starting soon
  6. ahmo

    ahmo Senior Member

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    @stevesayshi Very interesting hypothesis. Some time ago I was trying to understand TH1/TH2 dominance, and came across an article adding TH17 to the mix. It suggested that following a program to shift towards either TH1 or 2 was inadvisable. I had some thymus glandular on hand, and took it for some months, hoping to add an element that might support immune system w/o any negatives.

    I'm now completing my first week on low dose naltrexone. It's action seems to balance the immune system. There's a very long pr LDN thread. I've just joined the Yahoo LDN group. Here's an excellent intro page re LDN w/ many diagnoses. I started v small dose to avoid detox symptoms, am gradually increasing.
    https://sites.google.com/site/dudleyslowdosenaltrexonesites/home
  7. Adlyfrost

    Adlyfrost Senior Member

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    NJ
    Did you have IBS before or early on in your symptoms? NO

    Do you have sinus problems? SINUS WAS ONE OF MY EARLIEST SYMPTOMS (20+ YEARS AGO). BUT NOW NOT SO MUCH. BUT THEN I DON'T EAT WHAT I ATE BACK THEN.

    Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) NOT TECHNICALLY BUT CAN'T TOLERATE MOST IMMUNE MODULATORS

    Do you have MCS? IF YOU MEAN CIGS AND PESTICIDES AND FOOD DYES YES.

    If you have tried it, did you get lasting benefit from LDN? NEVER TRIED
  8. stridor

    stridor Senior Member

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    No- but colon removed due to polyposis
    No
    Yes
    No - surprising as runs strong in my family
    never tried.
  9. Antares in NYC

    Antares in NYC Senior Member

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    Ok stevesayshi, here you have my answers:

    - Did you have IBS before or early on in your symptoms?
    No, but they evolved over time, and got extremely bad at times, still ongoing and worsening with each onset.

    - Do you have sinus problems?
    Yes, constant, even after having sinus surgery to help make it better. To this day, very few things relieve the nasal/sinus congestion (certain antifungals seems to help more than standard sinus sprays).

    - Do you have autoimmune disease also?
    Not sure how to answer this. On the tests, I don't show specific markers for auto-immune diseases, yet if I take any supplements intended to increase or activate the immune system (echinacea, astragalus, Del-V), I get the worst physical reactions, including severe IBS that often includes bleeding. I have to avoid immune-boosting supplements and immune modulators just like people with auto-immune issues do.

    - Do you have MCS?
    If I do, it's mild. I have not done specific tests for MCS. Maybe I'm not paying attention.

    - If you have tried it, did you get lasting benefit from LDN?
    I have not tried it, but my doctor just wants me to start using it. I may be able to report back in a few months on this one.

    Hope it helps with your research.
    Last edited: Jul 23, 2014
  10. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
  11. OverTheHills

    OverTheHills

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    New Zealand
    Did you have IBS before or early on in your symptoms? No, I had a 'cast-iron gut' but now years into ME it is a prominent and worsening problem.

    Do you have sinus problems? Yes and No. Not regularly any more, but as someone pointed out above, I don't eat (or drink or do) what I used to. It is still my favourite site for physical inflammation (e.g. after accidentally eating something unwise, seasonal allergies etc)

    Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) Yes, I think so. Endometriosis (which may be)formerly, now +ve ANA, Raynauds and POTs (which may be). Hyperthyroid for a while too which is another maybe I think.

    Do you have MCS? Yes I think so but not severely - e.g. chlorine, cigarettes, sulphites, food colouring, scented flowers,

    If you have tried it, did you get lasting benefit from LDN? Yes - good for sleep quality and pain. Even though I don't get much pain I don't have any taking LDN.

    I have been a world class allergic-person since my teens many years pre-dating ME. In my case always the skin not the gut but then other people have remarked how unusually soft my skin is.

    OTH
    rosie26 likes this.
  12. daisybell

    daisybell Senior Member

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    New Zealand
    I am interested in how similar our responses are... and wondering if that is a geographical thing?? I too have a positive ANA, Raynauds and have had hyperthyroidism..

    Does your GP prescribe the LDN?
    rosie26 likes this.
  13. OverTheHills

    OverTheHills

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    New Zealand
    No there are two ways I get it prescribed : Dr Vallings in Auckland and my hospital 'fatigue' specialist. I've been taking it for a couple of years mail me if you need more detail OTH
    rosie26 and daisybell like this.
  14. Sinclair

    Sinclair

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    1. IBS yes, before ME/CFS symptoms
    2. Sinus NO
    3. No
    4. No
    5. Not tried
  15. Ninan

    Ninan Senior Member

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    Did you have IBS before or early on in your symptoms?
    Nope, never had any gut problems that I'm aware of.

    Do you have sinus problems?
    No.

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

    Do you have MCS?
    No.

    If you have tried it, did you get lasting benefit from LDN?
    No, it gave me energy after just one day which lasted for a couple of weeks.
  16. bailey2

    bailey2

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    No to all questions.
  17. juniemarie

    juniemarie Senior Member

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    Albuquerque
    IBS Before CFS yes
    Sinus problems not much now but very very bad before LDN
    Autoimmune disease not that I know of
    MCS Not now but it was horrible before LDN
    Benefit from LDN Most defiantly YES
  18. Leopardtail

    Leopardtail Senior Member

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    England
    Did you have IBS before or early on in your symptoms? No
    Do you have sinus problems? Near constant, preceded ME

    Do you have autoimmune disease also? YES (type I diabetes)

    Do you have MCS? No

    If you have tried it, did you get lasting benefit from LDN? untried
  19. worldbackwards

    worldbackwards I talk because I can

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    IBS symptoms? - Relatively early, first six months.
    Sinus problems? - No
    Autoimmune? - No
    MCS - Ooooh yes, it's not so bad as it was, but it used to be an absolute nightmare
    LDN? - Had to look it up. Nope

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