1. Patients launch $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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

My story and progress with cfs recovery and treatments used.

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

  1. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    Hi guy usual story in terms of CFS, came down one year ago after a virus or possible infection.
    Then went on to be bedbound. I gave up on doctors as i studied all the material and designed my
    own treatment program.

    As follows:
    1st step: using allicin to treat initial causes. http://www.allicin.co.uk/
    This stuff gave me horrific herxheimer reactions but i carried on as its just made from garlic
    and garlic cant do you any harm. It did the job other anti-biotics and i even tried
    antivirals none compared to this stuff.

    2nd step: diet modification to dr terry whals protocol http://www.terrywahls.com/
    she is pioneering M.S recovery using just diet. Amazing lady.

    3rd step: am just starting using ACE inhibitor lisinopril to stop my body producing
    the nasty singals that tell my body that im ill and need to lay down all day:

    and my secret weapon, an absolute must:
    Non alcoholic beer, becks blue: http://www.medicalnewstoday.com/releases/38763.php
    i drink at least 6 bottles a day now, its transforming that horrid feeling that seems
    to penetrate my very consciousness, after a pack of those i felt more normal.

    i am now self sufficient and able to gently exercise without feeling impending doom.
    Im going on a date next week, im really excited
    so much less scared of this illness when i have all the above.
     
    Wayne and merylg like this.
  2. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    i just got so excited i can cause pain to cfs i did a dance! its the only thing i hate and i want to damage the disease and ruin its day! good luck guys
     
    merylg likes this.
  3. Marco

    Marco Old blackguard

    Messages:
    1,383
    Likes:
    1,060
    Near Cognac, France

    Hi Richard.

    Welcome and glad you're doing better.

    I was with you up to the non-alcoholic Becks. Yuk - low or no alcohol beers always taste to me like someone has stubbed their cigarette out in your tin.

    I'll stick to brewer's yeast thanks.

    But good luck all the same :)
     
  4. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    hiya :) but real beer has such unwanted problems, i worry it can bring on a crash :(, try drinking
    a pack of 6 becks blue, i promise you wont regret it. I worry that the byproducts of breaking down alcohol
    put strain on the body.
     
  5. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    i got told off on another forum for posting my story so i hope anybody understands that i posted it up just
    incase it is of any use to anyone. I had such profound Neurological and body symptoms i am shocked
    the other forum told me i had depression. I used to hold to to the side of my bed trying to get through
    each 5 minutes!
     
  6. Sea

    Sea Senior Member

    Messages:
    748
    Likes:
    878
    NSW Australia
    Welcome to the forum richard
     
  7. m1she11e

    m1she11e Senior Member

    Messages:
    313
    Likes:
    91
    Florida
    Hi Richard,

    Appreciate all the information. Do you have any other info on Step 3?
     
  8. m1she11e

    m1she11e Senior Member

    Messages:
    313
    Likes:
    91
    Florida
    Oh, and how much Allicin were you taking a day? Allicin max?
     
  9. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    hey guys: i was on one allicin max tablet a day and raised to two for 3 months, the die off period was very strong,
    it was about the very limit of what i could handle.

    Step 3 is a bit of a trial and i feel its helping: im using an ace inhibitor but others have suggested arb blockers
    may be more useful. ACE inhibitors block the conversion of angiotensin I to angiotensin II, too much angiotensin ii
    is not good for the body, and i suspect that people with cfs will have higher levels of the ratio.
    i just take 10mg of lisinopril, but it does give you a bad cough!

    angiotensin ii is a key component to making us feel ill, its makes the brain say we are ill, lay down, your tired,
    its called sickness behaviour. I figured by reducing anything that tells my body im ill the more chance
    i can be of breaking the cycle!
     
    xks201 likes this.
  10. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    i must also add that im no way trying to sell any of the above products, use the competitors brands if you
    doubt my motives!
     
  11. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    must also note that i was tested for lymes 3 times and nothing. Lymes can cause terrible die-off on allicin!
     
  12. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Diet modification alone more than likely accounts for your progress. X
     
    Allyson likes this.
  13. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    hiya, thats a problem with taking all my steps at once i have no idea which helped and which didnt!

    i dont eat any sugar at all! i dont even each much fruit as sugar scares me!
     
  14. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    check out the paleo boards to see how common your reaction is. Congrats btw ... TC ... X
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,396
    Likes:
    4,786
    australia (brisbane)
    non alcoholic beer?? I only drink alcohol for the affecto_O
    good to see u here, look forward to seeing more of your posts.
     
    Allyson likes this.
  16. taniaaust1

    taniaaust1

    Messages:
    8,229
    Likes:
    5,198
    Sth Australia
    Welcome. Hi :) .. It may be what you did which has helped or it may just be you were going to recover from this illness anyway.

    Recovery isnt uncommon within the first couple of years of this illness (in fact a doctor actually told me I would recover within 2 years due to that unfortunately in my case I didnt thou). ME/CFS like illness with recovery within 2 years used to be called "Post Viral Syndrome".

    You are definately doing the right think thou by doing all you can early illness to try to recover from it.

    Best luck.. may you make a full recovery.

    Be aware if you do fully recover, you will always be susceptable in getting this illness back, I found out that the hard way. I had a full recovery from a severe bedbound state but ended up getting this illness again cause I caught a virus and as I'd been fully recovered, didnt rest and crashed back into this whole illness again.. never been able to recover again since.

    Take care with that exercise as it may prevent you from fully recovering if you are overdoing it at all (its easy to over do something very slightly and not be aware you have over done but it could be enough to prevent further improvement). If you are getting any negative after affects at all.. you are certainly over doing it.
     
    beaker and heapsreal like this.
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    What if your body is making angiotensin ii because you are ill and do need to lay down? This sound like it could be a 'beating the tired horse' type of treatment. I think it should be approached with caution.
     
    Allyson, L'engle and beaker like this.
  18. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    Heapsreal: yes the non-alcoholic beer is so good im sure its just as usefull as a NSAI's but without
    the stomach problems> I dont think i could drink real alcohol that would be really scary!

    Taniaaust: I've heard quite a few people say i may have just been recovering anyway. its fairly possible!

    Your advice is important, im always going to keep aware not to overpush myself,
    and if i get any virus im just going to lay in bed for a week. im going to cut back on activity!

    Little Bluestem: yes very true it might make me feel better then i am, so will be very careful!

    Im glad i came on here, you have been very helpful already guys :)
     
    Wayne and merylg like this.
  19. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    I wouldn't rest for a week. Two or three days tops. I'm not saying you should run a marathon but keep
    in mind that our bodies detox and heal via movement as well as rest. I'd been deconditioned and getting winded
    easier after 2 days. Been there done that.

    I'm not interested in any cfs studies because the very definition of cfs is a group
    of symptoms. Cfs is a waste basket dx. There was an article posted here recently that demonstrated that perfectly.
    I think beyond posted it.

    You'll find other patients with other illnesses having similiar symptoms. They're trying to say pem is the hallmark
    for cfs but dr peckerman explained that hypoperfusion due to orthostic intolerance (oi) can cause this. Google
    Peckerman cfs.

    Hypoperfusion via oi means our upper bodies have decreased blood flow so our organs
    can't function properly. In that article he didn't mention we'd also have hyperperfusion in whatever area
    the blood settles in. If you google hypo and hyper perfusion you'll see how our bodies deal with these
    conditions. Of course there are a host of chemicals involved. Tc .. X
     
    merylg and taniaaust1 like this.
  20. richard jarritt

    richard jarritt

    Messages:
    24
    Likes:
    10
    thanks chocoholic,

    yes i agree that cfs is a term thats doctors use when they have no idea!

    im going to read into your post as its quite detailed and i need to grasp what these terms are
    and the outcome for our bodies in that respect.

    should have been on here sooner to learn about people's experiences!
     

See more popular forum discussions.

Share This Page