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Is it a new disease or its CFS ?

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

  1. Omar88

    Omar88 Senior Member

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    Wow thats a lot , the thing sushi is even for two weeks the help was so much little and was on my tongue only cause i didn't feel better some days were the same as before like i was doing nothing beside i was taking probiotics too and it seems that nothing was happening and doctors here dont usually give high doses of this treatment cause they don't saw a lot of such cases if they ever see ! so two weeks was terrifying for my doctor when he wrote it he want to write a week and i kept pushing :p
     
  2. Omar88

    Omar88 Senior Member

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    Thank you for the good information , i read some of them before and the rest now but the thing that i cant find as a symptoms is an enlargement lymph nodes and thats one of my major symptoms , i have them every were and they hurt like my body is saying am fighting but i cant do it enough :(

    did you ever so cases like this with tender swollen lymph ?
     
  3. Overstressed

    Overstressed Senior Member

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    Hi Omar,

    I have it too, still, and I had it back then. My disease started just as it is described for HIV. But, I'm negative, and my CD4/CD8 ratio is pretty stable all these years. I don't have the labs from the first two years, unfortunately. I got infected, the day after I had flu-feelings and after exactly 3 weeks, I must have had a fever peak during the night, completely soaking wet, even my matrass. Five years later, I still have the lymphs, and many more symptoms, and a diagnosis of ME. How is your thyroid doing? Ever had your thyroid tested? This was one of my first labs that showed difference in the beginning. My TSH jumped from a very low value, to a high value, still normal though. Then, auto-antibodies started to appear to my Thyroid.

    Best wishes,
    OS.
     
  4. Omar88

    Omar88 Senior Member

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    I forgot to say i had a blood fungus culture that took 6 weeks and it was clean and i had urine,semen fungus culture and they were clean too ..
    I might have a suptum culture cause its mentioned as a test for all of them to see it might in detecting bacterial or fungus infections
     
  5. Omar88

    Omar88 Senior Member

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    Am sorry to hear your situation but i need to know why you thought it was HIV ? did start after a sexual exposure or what ? and i would like to know what kind of tests had you done specially for infections and why doctor thought you got ME ?
    My TSH numbers are stable but i think that i need more tests for this specific and accurate stuff
     
  6. Overstressed

    Overstressed Senior Member

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    Hi Omar,

    I had all STD-test there are, plus HTLV1-2. Since I had geographical tongue, rightafter appearing, after the sexual contact, a stomatologist biopsied my tongue. I can tell you, that hurts when they cut a piece out of your tongue. I had my eyes examined numerous of times, because I have/had blurred vision, lots of eye-pain, and pressure behind my eyes. I thought I might progress to uveïtis. A symptom of HTLV. After two years I started to get tinnitus, and felt dizzy often. So, I had my ears examined and was diagnosed as having Meniere's. Meniere is also a bright-spectrum disorder. The specialist told me I have Meniere's, but not the typical one. This was tested by stitching a needle through your tympanic membrane, to measure the pressure in your inner-ear. There was clearly an overpressure. That hurt too. But I was determined to find the cause. But it all explained just parts of my illness.

    Finally I was sent to a CFS/ME-specialist, who diagnosed me with it. It was not De Meirleir, though, although I live in Belgium. The reason I thought it was HIV, was because the route of infection with me. It was through sexual contact with condom, a short episode of oral sex. I'm telling this, because one's told oral sex is safe. It is NOT at all.

    There's much more out there, than the population knows about.

    Best regards,
    OS.
     
  7. Omar88

    Omar88 Senior Member

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    Couple of my doctors called my tongue a geographical tongue while the others says its a candida overgrowth ! i know that the only thing doctors agree on my case is to disagree and thats killing me :(

    About our cases Overstressed i have two theories cause i think we might be in the same bought !
    First one is that we got a known rare stuff that doesnt usually get to people this way and thats reqiures to keep digging ..
    The other one this might be a new stuff that people still dont know what is it "HIV like disease" or what it can do "XMRV/MLV" and what all we can do in this case to fight and pray cause if i stop i know i will fell, down the only thing is pushing me to continue with a half smile on my face is believing that tomorrow will be better :)
     
  8. nanonug

    nanonug Senior Member

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    These symptoms are consistent with some form of mast cell activation screw up. Have a look at this thread and see if it rings a bell: ME/CFS is a mast cell disorder (hypothesis).
     
  9. Omar88

    Omar88 Senior Member

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    Thanks for the replay ,, this has been mentioned before to me and i was looking to the kind of tests should be done for the diagnose and here are they :

    • Bone marrow biopsy: its already scheduled for me just waiting my hospital to get new needles.
    • Blood tests: mine is normal.
    • Urine tests: normal too .
    • Imaging tests: didn't show this kind of stuff.
    • Skin Biopsy: is scheduled in my list .
     
    nanonug likes this.
  10. rlc

    rlc Senior Member

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    Hi Omar 88, had a look round on the net it seems that all the fungal infections I mentioned in my last post are capable of causing enlarged Lymph nodes. I don’t know enough about the diagnosis of them to say if the cultures you’ve had are enough to test for these diseases. Some sites are saying that chest x-rays and antibody tests are needed, so ask your doctor if everything that needs to be done has been done to rule out these diseases.

    All the best
     
  11. nanonug

    nanonug Senior Member

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    What some people also do is to try a combination of an H1 with an H2 blocker and see if they feel better. Myself, I take fexofenadine and ranitidine.

    Blood/urine tests are somewhat unreliable given the potential amount of substances release by mast cells. On the other hand, bone marrow biopsy is the gold standard for mastocytosis but not for MCAS.
     
    taniaaust1 and merylg like this.
  12. Omar88

    Omar88 Senior Member

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    I had an
    As i told you i had an x-ray and a CT scan too but the doctor didnt mentioned such stuff ,, i will have Fungus culture for the bone marrow biopsy as one of the tests the doctor mentioned they will run ,and i will discuss with my doctors is that enough or not for the stuff in your life ...

    I really appreciate your tries to help thank you so much
     
  13. Omar88

    Omar88 Senior Member

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    I cant find enough information about MCAS testing as much there are for mastocytosis !
    I hope you can provide some for me ,, Thanks so much
     
  14. nanonug

    nanonug Senior Member

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    Look at the link in my signature. The first post it points to has a link to an article with additional info. Typical MCAS tests are 24-hour urinary N-methylhistamine, serum tryptase and serum protaglandin D2.
     
    merylg likes this.
  15. Omar88

    Omar88 Senior Member

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    Thanks again ,,
     
  16. Hugocfs

    Hugocfs Senior Member

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    I figured it was something like that, but wasn't sure what it exactly stood for.
     
  17. richvank

    richvank Senior Member

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    Hi, Omar88.

    It would be interesting to know if your glutathione has become depleted. I don't know where you live or what testing is available to you, but glutathione depletion can suppress cell-mediated immunity, which is the immune response needed to combat viruses, yeast infections and intracellular bacterial infections. That could explain some of the things you have reported. I think it could also account for the elevated CD8 lymphocytes. Glutathione depletion would prevent them from making enough perforin, so that they would not be able to attack virally infected cells. The response of the immune system might be to make more of these cells, in a futile attempt to prevail over the viral infections.

    Glutathione is depleted in ME/CFS and in AIDS, as well as in some other conditions. In ME/CFS, the methyation treatment is designed to raise glutathione, among other benefits.

    Best regards,

    Rich
     
  18. Omar88

    Omar88 Senior Member

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    I just was reading about this and i all i found that its a supplement that contains Vitamin E and C so correct please me if i am wrong !
     
  19. richvank

    richvank Senior Member

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    Hi, Omar88.

    Glutathione is an antioxidant, as are vitamins C and E, but glutathione is at the basis of the antioxidant system, and it recycles vitamins C and E when they become oxidized.

    For more detailed information, I suggest that you view this video:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}

    The slides can be obtained by clicking on the blue print below the video. The video and slides are in English, though the webpage is written in Swedish.

    Best regards,

    Rich
     
  20. lnester7

    lnester7 Seven

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    I was born with Geographical tongue, what do they biopsy for?? everybody just dismissed like it is a normal thing to have.
     

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