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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. andre79

    How to inject 4ME yourself?

    Thanks Sushi, so I could use the needles from the insulin syringes that I alredy bought and use them with the 3 ml syringes? I apologize but I really have not idea about this stuff.
  2. andre79

    How to inject 4ME yourself?

    Thank you Hip. I guess it won't hurt trying to see what happens.
  3. andre79

    How to inject 4ME yourself?

    If you can tell me where to find them I would be very thankful. I happen to have a close relative in the UK and I am meeting her next month. So she could bring me the syringes. If you don't mind sharing, how was your experience with 4ME? Did you perceive any improvement?
  4. andre79

    How to inject 4ME yourself?

    Thank you Hip, How did you do on nexavir? Any progress? Dr. De Meirleir ordered B12 injections too, three times a week, but those are intramuscular and I am finding someone to inject me. I bought the vials already. Actually, I am a little apprehensive about starting the 4ME treatment now...
  5. andre79

    How to inject 4ME yourself?

    I have just finished three cycles of flagyl and I am about to start a one month trial with 4ME. Since it says it subcutaneous I got insulin syringes of 1 ml and the vial brings 2 ml. According to the pharmacist those are the only sub cutaneous there are. My questions for people that take 4ME...
  6. andre79

    Dental work was very painful

    Lack of vitamin C maybe
  7. andre79

    Where to buy mutaflor and hydroxycobalamin on line in UK?

    Hi guys! Please help me with something. I need to buy metronidazole, mutaflor and hydroxycobalamin online in the UK. I have been searching in the web and haven't been able to find a reliable site to get them. I need a site that ships to a city in the south of england. I need to get this stuff...
  8. andre79

    Three years and no diagnosis. Frustrated

    Hi Sea, I haven't been able to follow up that idea yet, mostly because I am exhausted of going from doctor to doctor and being dismissed. I don't think I can put up with that one more time. What I really want is to go with a doctor that really understand my condition. He/she is the one that...
  9. andre79

    Three years and no diagnosis. Frustrated

    Hi guys, So last month fasciculation came back, like the ones I had during onset and I started again a Vitamin B complex and puff gone again. So everytime I have fasciculations I take vitamin B complex and they dissapear. What does this mean?i lack vitamin B? Does this have something to do with...
  10. andre79

    Three years and no diagnosis. Frustrated

    @taniaaust1 Thank you for your replies Tania, in fact, i felt weak during the fasting but a little more energetic (does that even make sense?) It is so hard to explain, I do have awful fatigue, with good and bad days, my symptoms come and go randomly, I have tried to find patterns (if I eat...
  11. andre79

    Three years and no diagnosis. Frustrated

    See @WillowJ I hadn't thought of that :bang-head: (damn brain fog) but yes, that could be something to try next. thank you!
  12. andre79

    What does this test result mean?

    Thank you Dr Edwards, I will make sure of testing the liver regularly, I just felt relieved that my liver is not in such a bad shape as for now, and I am glad I could pick it up early to stop the damage.
  13. andre79

    What does this test result mean?

    @nandixon actually my liver profiles has been always normal, including alkaline phosphatase. Now, what is "normal"? Right in the center of the range, sometimes a little bit higher than average, but never even close to the high end of the range. Never have been low. This was before onset. After...
  14. andre79

    What does this test result mean?

    I apologize for hickjacking your threat @PhoenixBurger i was just curious and I think this information is useful for many of us. Thank you @Oredogg i will certainly keep an eye on my liver, testing frequently. If anything, i can pick it up early to stop doing much damage in the future.
  15. andre79

    What does this test result mean?

    http://www.patient.co.uk/doctor/abnormal-liver-function-tests I see you are right about the specifity of GGT to the liver, even though that can't explain how I have high GGT and normal ALK Phosphatase (the opposite cas of what you mentioned) If I had indeed PBC wouldn't both of them be high? I...
  16. andre79

    Three years and no diagnosis. Frustrated

    When you are desperate, you take desperate measures. Two days ago I finished a three day of juicing fasting, just veggie juices, no fruits. I have to say that the first day of the fast was awful, but the second and third were pretty ok. Some symptoms dissapeared instantly, like hair loss (i...
  17. andre79

    Three years and no diagnosis. Frustrated

    @Oredogg thank you for your message. Definately mast cells disorder is something I am going to start testing. During onset i had a monocytosis and eosinophilia which are markers of the mast cells disorder. I also had the red flush in my face. Later test didn't show any problem with my monocytes...
  18. andre79

    What does this test result mean?

    I would like to double ckeck this information because I have just received right the opposite info from my hepatologist. Alkaline phosphatase is directly related to biliar conducts inflamation or destruction, while GGT is inespecific and could be related to other things. I was just under...
  19. andre79

    Three years and no diagnosis. Frustrated

    @Jammy88 mast cells disorder Jammy! Actually that was one of the options I was studying before the PBC stuff and totally forgot about it. And it has treatment, right? Do you have any idea what test should I perform to diagnose it? I could go to a hematologist instead of the allergist. You hang...
  20. andre79

    Three years and no diagnosis. Frustrated

    Guys, good news, the hepatologist ruled out PBC (wow, that was a relief, I even cried thanking the Lord) and he said that my liver is fine, just a slightly fatty liver that wouldn't cause any of my symptoms. He doesn't have an explanation for my two AMA positive, but my last AMA was negative, so...
  21. andre79

    Three years and no diagnosis. Frustrated

    Again I want to thank all of you guys for your kind messages. You have no idea how much they mean to me at this moment. I am having a bad time and I am not good at coping when it comes to my health. I am not a negative person, actually i am more an optimistic one but when I find myself in this...
  22. andre79

    Three years and no diagnosis. Frustrated

    Minkeygirl, I changed the title of the post out of respect and I apologize if I offended anyone. But really, you have no way to know how I am feeling and if I might act upon it. I am not here to be judged as overdramatic. As I offer respect and many times support to others, I ask to be...
  23. andre79

    Three years and no diagnosis. Frustrated

    Thank you SDSue, I know... it's been three years already without answers and I had a bad day, and i had to vent... I will probably not give up, but today... i allowed myself a hating doctor day... :)
  24. andre79

    Three years and no diagnosis. Frustrated

    Thank you 5150, I know, actually I felt so bad today and I knew that the only place I could find some comprehension and sympathy it would be here.
  25. andre79

    Three years and no diagnosis. Frustrated

    I understand that suggestion a diagnosis to a doctor may not be an intelligent move, but Willow, I have been in 40 doctors in three years! 40! And no one of them have a clue about my case. What else should i do? I have to research by myself, or let myself die... Most of the doctors i have...
  26. andre79

    Three years and no diagnosis. Frustrated

    Hi Deleker, I would consider it if it wasn't so expensive and it is kind a blood tranfusion from 1000 persons, isn`t it? I would be very afraid of it, a new infection is the least I need now... correct me if i am wrong please...
  27. andre79

    Three years and no diagnosis. Frustrated

    Misfit, I am currently located in South America and I have trouble travelling abroad to get help because a particular situation in my country. When I started with this illness I had pain all over my body, the doctor diagnosed me with fibro, prescribed Cymbalta and it took it for more than two...
  28. andre79

    Three years and no diagnosis. Frustrated

    I apologize for the title of the post, but this is how I really feel. I am exhausted of going from doctor to doctor (around 40 in three years) and I have not received a diagnosis, except for fibromyalgia and psychiatric issues, despite the fact that I had never presented in my life any...
  29. andre79

    The next time any Dr. tries to feed you any BS about the internet....

    And being the devil's advocate this time, i think that Dr Google sometimes may be a little alarmist. If you type Headaches causes (every single person in the world has had a headache at some point of their life) then it shows as one of the possible causes Brain tumor. Really? For an anxious...
  30. andre79

    how do you guys respond to the psychiatric accusations

    First, Why having a psychiatrist disease should be an acussation? Have the people that actually suffer a psychiatric disease committed a crime or done something to get that illness? It's not like they want to be sick, the same that we don't want to be sick and neither of us are guilty of our...