1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

NSAIDS Catch 22?

Discussion in 'General Treatment' started by usedtobeperkytina, Apr 7, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I have been looking into NSAIDS.

    Although we have chronic inflammation, I have thought that is immune system response to viruses. So that inflammatory is sending signals to fight infections.

    So artificially lowering inflammation, I thought, might prevent body from effectively fighting the EBV, HHV-6, and all the other junk we have.

    I found this statement in a study:
    Because of their antiinflammatory effects, NSAIDs have been suspected of suppressing host immunity during infection, particularly GAS infection.

    and....
    these drugs can mollify the signs and symptoms of streptococcal infection, possibly delaying appropriate management and treatment (3). However, the potential adverse consequences of suppressing clinical indicators of disease severity (e.g., fever, pain, and inflammation) with NSAIDs apply to myriad infectious and inflammatory conditions, not just invasive streptococcal disease.

    Help me out if I am wrong.

    Do we want to stop the body from signaling to fight infections?

    Tina
  2. dannybex

    dannybex Senior Member

    Messages:
    2,135
    Likes:
    497
    Seattle
    It is a catch 22...I'll take an ibuprofen only as a last resort, but I'm sure many others can't get through the day without more pain relief.

    I'm not sure, but I think that NSAIDS also lower glutathione levels, and SAM-e levels in the liver. They can be very hard on the liver...something that's already dealing with toxins, whether bacterial, viral, or chemical.
  3. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    I have wondered this as well. Thanks for posting the study quote about NSAIDS suppressing immunity, as I haven't seen that before. XMRV is apparently turned on by inflammation, which is why Dr. Mikovits has said NSAIDs could help, so maybe it's special in that regard. I really don't know. I think we'd need a clinical trial of NSAIDS for CFS in order to find out, but I don't see that happening.
  4. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    531
    The immune system is quite complicated and has many components. NSAIDs suppress part of the immune system but whether that suppression helps or hurts the overall illness may not be easy to work out due to these interacting components.

    Dr. Mikovits mentioned it might help in theory but she prefaced those statements by saying that she is not a clinician. Taking NSAIDs regularly long-term even at low doses can have effects on many things, like raising blood pressure, increasing risk of stomach ulcers/bleeding, and hurting your kidneys. It's OK if you are taking it under medical supervision but I don't think it's a good idea to just start taking it for CFS.

    There are people who take it regularly for arthritis for example and have CFS. It might be interesting to ask those folks if they have improvement in their CFS symptoms when they are on vs. off NSAIDs.
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Where did this get moved to?

    I thought this area was for XMRV treatment. I know I didn't mention XMRV, but the NSAIDS were recommended as treatment for XMRV.

    Tina
  6. shiso

    shiso Senior Member

    Messages:
    159
    Likes:
    6
    Interesting post...

    I have taken ibuprofen (Advil) or Tylenol as a secret last resort, like when I go on an outing (like meeting up with someone for a meal) that I know will be longer/more energy-consuming than my threshold on a given day. I've found that popping an Advil or two makes me feel slightly less "sick," albeit temporarily, and gives me an extra hour or so of extra battery life (e.g., of being a semi-engaging dinner companion).

    I suppose (based on no scientific knowledge whatsoever) that it makes sense that the Advil is fighting some kind of ongoing/chronic inflammation and that's what's causing the *temporary* relief. I feel the same or worse than baseline after the Advil wears off.

    I guess because doctor friends have always told me NSAIDs are bad for the liver, I've only taken them as a last resort, like when my need to live a little (like going out to dinner) gets the better of me. I'm not prepared to try them as a long-term ME/CFS treatment though, at least at this point...
  7. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    71
    PA, USA
    The only thing that ever helped me in over twenty years was high doses of Naproxen aka Aleeve. The acid reflux won't let me take it anymore, if I dare to, I get bad problems with the acid. Naproxen also blows me up, and I think it raises blood sugar levels. It's just not a great drug, but it works a miracle on my stiffness and pain. None of the other NSAIDS ever did anything much for me.
  8. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    Every NSAID poses a cardiovascular risk, per my specialitst. Remember celebrex or whichever drug was pulled from the market b/c of heart attacks. Well, even ibuprofen falls into the same category. No worries about the liver. That's the ingredient in Tylenol.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I think my theory is now that...

    androgens, cortisol or inflammation from other infection turns on XMRV replication.
    This causes it to infect more NK Cells and T Cells.
    These are reduced in number and don't function as well.
    This causes other latent viruses to replicate
    Both XMRV and other viruses cause cytokines to go higher, causing inflammation

    Then move up to the beginning of the list and start over again.

    So it become a circular chain reaction.

    Since the inflammation and cytokines are needed to fight the virus, it seems clear the place to bread this circle is in stopping the virus from replicating even if there is inflammation, cortisol and androgens.

    And that is what the researchers are looking into.

    Tina
  10. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    531
    FYI, the latest study by Singh included aspirin as one of the compounds tested. It looks like it's not a good inhibitor of XMRV.
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Yeah, I noticed that.

    tina
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,015
    australia (brisbane)
    I have been taking dhea for the last couple of weeks with some success, i have since been doing abit more research on it and found it has anti-inflammtory effects especially against IL-6 which is an inflammatory cytokine produced from certain infections that are related to cfs
  13. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    There are various infections, and each one has their own "mark". Some are fought off easier with the TH1, others with TH2, some are actually causing immune dysfunctions.

    This is how I've though of it:
    The XMRV might very well in large parts be inside the B-cells (like a hive), and by being there they - like other viruses - can mess with the fuction of those cells, and particularly in how the B-cells should stimulate the immune system.

    I think the XMRV does cause much of the immune dysfuction we are seeing, rather than the other way around (the body fighting the virus, and therefore the immune system changes).

    With what we know of the inflammatory response (http://forums.aboutmecfs.org/showth...mokine-profile&p=124292&viewfull=1#post124292) I think it's best to take a aspirin or two just to fight off some of that inflammation. (I don't have pain, but use it for the inflammation)

    It might, and I say might, be easier for the body to fight the virus if some of those come somewhat under control.

    I have no way of knowing if it's right to do that. But if you take *really* strong inflammation surpessants (cortisol *high* doses) then it has the contrary effect on many. But as for low doses of anti inflammatories, has shown to be helpful symptom wise (such as the double blind study on low dose cortsol and CFS; many patients had a slight improvement).

See more popular forum discussions.

Share This Page