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Is it a new disease or its CFS ?

Discussion in 'Immunological' started by Omar88, Aug 26, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    ME patients usually start LDN at usually somewhere between .5 mg and 1.5. How fast you increase your dose depends on your response. Most are likely to have some kind of immune reaction and/or insomnia every time they raise the dose. I used to wait a week or 10 after all such issues had resolved, then raise it by .5 mg. You don't go higher than 4.5 unless you weigh a great deal--like over 250 lbs (an estimate).

    Some people go more slowly than this. I think it took me about 4 months to reach 4.5 mg. Now I only take 3 mg as that feels best at the moment. Liquid is much easier to measure if you can get it. It is usually a prescription med but can be found in India non-prescription in 50 mg tablets that you have to dissolve in distilled water, keep in a dark glass bottle in the fridge (after being dissolved).

    I have only taken GcMAF injections. The effect seems to be a bit different, but I couldn't recommend one over the other. The dose of the yogurt is unknown, so people do it by trial and error. The injectible is liquid and the dose depends on the dilution. The GcMAF from GcMAF.eu and BGLI is very concentrated so if you are using low dosing, it would need to be diluted with sterile saline in order to measure a low dose. I have a preparation that is already diluted.

    Best,
    Sushi
  2. Edward

    Edward

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    Yes I confirm I was good last three years. I took b12 injections and vitamins and magnesium. I had quite normal life but not completely recovered.
  3. 8eraser8

    8eraser8

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    Dear Omar
    Do you have any news?

    Thanks

  4. Omar88

    Omar88 Senior Member

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    Still doing my best getting more people listening to more opinion and cases
  5. urraco2012

    urraco2012

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    Hi Omar,
    My best wishes for this year, specially with this finding our problem. I'll be following you to know if you have any news or ideas. I dont have patience and strength any more for this so you are our hope, haha, sorry Im too lazy now.
    Thanks Omar and go ahead, but not get crazy!
  6. Omar88

    Omar88 Senior Member

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    We should work together alone we wont reach no were !
  7. ravikumarsu

    ravikumarsu

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    Hi Omar,
    What all are the problems Chinese people face now after 8 to 10 years (from news paper translations)? It look likes ladies gets more severe symptoms than men after 7 years.
  8. Hip

    Hip Senior Member

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  9. Omar88

    Omar88 Senior Member

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    Where did you get this infromation about 7 years and woman getting more sicker ?!

    I cant find a blog saying "Am sick since 8 or 9 years" there are 2 i look to them mainly and its just stories, symptoms and theories
  10. collegeusername

    collegeusername

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    Hey, FINALLY someone afflicted is a computer tech and made a concise and usable site detailing the incidence of this disease at this URL: http://hivlikevirus.com/.
    Please add your story. It will be moderated so it won't be disorganized like medhelp or steadyhealth and full of children and hypochondriacs etc etc. Please only report your story if you are positive you suffer the same disease, and if you have the time/energy to report your story, symptoms, and treatments logically and articulately. If you are still unsure whether or not you are afflicted, consult this website which details the symptoms quite well: http://chronicsorethroat.wordpress.com/.

    Thank you for your time, and I hope we can overcome this by publicizing our stories in a professional manner, to be reviewed by progressive and willing doctors once a sufficient database has been compiled.

    -collegeusername

    ***If you are foreign I still encourage your input, but PLEASE contact me on medhelp or on the website's forum if you have a poor grasp of English so that we can edit out confusing mistakes that can contort information or lead a doctor to be unwilling to read incomprehensible patient stories.
    merylg likes this.
  11. urraco2012

    urraco2012

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    Ok, whatever you need just let me know.. but for menthal sanity sometime is good to forget this for a bit..
    I have to say that I read collegeusername's post about hivlikevirus webpage... I dont think is a great page, but is important the efforts of worried people trying to find an answer. And reading the symptoms, I have to say that I had and I have a lot of similar symptoms that appear in the web, is scaring and just show me that is incredible how could it be that nothing is known about it yet! Each of us are crazy or what? Is this some weak virus without importance to dont pay attention of it? Can we be assured that we will not hurt our girlfriends?... Doctors say that... "Go on with your life''... and I say ''How can I do that if I feel siiiiiiiiik, and unfortunately right after an encounter with some slut! What kind of infection is this!!" f@%#&, this will drive me crazy, really.
  12. collegeusername

    collegeusername

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    It's not a perfect webpage but thats because the website creator is going through the worst of this disease right now. we can improve it. help me spread the word on the CFS and post-viral fatigue forums
    Yocheved likes this.
  13. 8eraser8

    8eraser8

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    Hi There
    If this person infection is new, we really need to get his acute infection blood, when the symptoms are the strongest, its the only way to indentify this virus, unfortunately i did not know this i did not keep this blood, please tell this person to keep his blood in the freezer, 10 tubes

    contact me afterwards, i will help with the process

    only together we can try to find a solution

  14. collegeusername

    collegeusername

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    i've had blood taken throughout having this disease, the most recent being in early Dec., but I imagine they dispose of it soon after?

    as an aside, I've begun taking Gabapenin (neurontin), as many sufferers have claimed it reduces their symptoms. I'm only 2 days into the meds, beginning with two (2) 300-mg doses per day. The only side effect I've experienced is a sharp and fleeting sense of nausea right when the pill gets to my stomach. The positive effects are that I feel greatly reduced sensation (which means greatly reduced pain) at places where the nerves concentrate, such as my fingers, toes, lips and groin. I would recommend this, especially if your typical pain medication (ibuprofen in my case) is completely ineffective against your pain. I've been told this is an indication of nerve damage.
  15. 8eraser8

    8eraser8

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    Actually the oldest one is most important, ie around 10 days after infection. Call the lab as soon as possible, if u tested for HIV, they need to freeze this blood for retest if they think they made a mistake. I would strongly suggest u call all the labs u tested and see if they have kept the blood, if yes let me know. how long are u now post infection?

    If by luck they kept the acute phase infectious blood, we have very high chance to identify this virus and hopefully can see if we can get some treatment, I already know the virologist who can help me but we need this acute phase blood, it must be kept nitrogen frozen

    In which country are u located?
  16. collegeusername

    collegeusername

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    im the usa, but im waay past 10 days so i won't bother. im at 9 months or so. I know this isn't HIV, because I've had 0% chance of exposure to HIV, and I've also tested 3 times (once before twice during).
  17. 8eraser8

    8eraser8

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    9 months is too far for new blood, how about the older blood u taken for test, did u test during the first 3weeks of the infection? If yes maybe u can call the lab to see if they kept that blood?
  18. collegeusername

    collegeusername

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    I can get the exact dates but I believe I took my first blood test at 5 weeks, and I am able to call and ask if they still have it. however, the worst of the disease hit me from week 4 to 10, so perhaps 5 weeks is an ok time to test.

    are you in the US too? can i hear your story?
  19. 8eraser8

    8eraser8

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    My story is a few pages back in this thread, how about u? How did u get this stuff, i am not in us, but we can still share info n try to help each other,
  20. 8eraser8

    8eraser8

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    My story is on page 9

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