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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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Search results

  1. M

    What is your normal temperature?

    35,5 celcius, always feel very feeverish when the temp gets over 36,5
  2. M

    Norwegian TV: Patients pay out of pocket for private Rituximab treatment

    I believed they was going to be stopped anytime from doing this by the Health directory or was they cleared from the case?
  3. M

    Chronic low grade fever as MCAD only symptom? Spring-summer exacerbations

    Following this tread. I have struggled with low grade fever in 20 years and its one of my worst symptoms because it feels like a high fever and it makes me faint easily when I try to walk around. I have low C3a and C4a, my interleukin 6,8 and 10 is raised. Il 6 makes the fever response am I...
  4. M

    Vivomixx on promotion - 20% off

    Thanks for the tip! So cheap compared to the prize we use to pay. Have to order for the whole family:lol:
  5. M

    My Valcyte pilgrimage

    . This was interesting! Are you both igm and igg positive or just one of them?
  6. M

    Fluoxetine - antiviral application

    This might explain why I got less of my cronic fever when I was on Fluoxetine. I could only handle 5g. Its important to be very careful and take time with increasing the dose if you are sensitive
  7. M

    Trouble Sourcing Clindamycin

    The pharmacy said they where enteric coated capsules but I am not 100% shure because I couldnt fint anything saying that in the paper. I am thinking about bringing them with my next doc appointment to ask if they are. They are also sold as Cleocin, looks like it depends on which country :)
  8. M

    Trouble Sourcing Clindamycin

    In my country its called Dalacin, have your pharmacy checked for other names for it?
  9. M

    Gammanorm and fever

    Is there anybody here that has sucess with Gammanorm or other gamma globulins? And can it be helpfull with fever?
  10. M

    John Caudwell

    @duncan thank you so much, I now understand more and I see that I misunderstood the article. The other articles suggested in the end from this researcher also confirms this. But even though she has this autoimmune vision for Lyme disease she can maybe explain some part in why some get ill and...
  11. M

    John Caudwell

    @duncan Can you explain a bit what you mean? I didnt quite understand and my mind is to foggy to read thru the link again. Last time I read it I thought it was about some HLA gene that possibly made us have a wrong reaction to Borrelia witch allowed the spirochete to florish and multiple in the...
  12. M

    John Caudwell

    Just some short input from me, I think this link can be the beginning of explaining why some get very ill from the spirochete and why some dont get lyme from it. http://www.whatayear.org/02_10.html We know that lots of healthy people also have spirochetes but maybe the LTT test can better show...
  13. M

    National Welsh newspaper prints my Lyme story

    What a nice article, Justy!! Although sad to read but it was very good to educate and to get people know about the worries Lyme families have. I am familiar with the worries for new child to get ill... And in my family we thought first I was the only one ill, then my sister and now my brother...
  14. M

    UMass works toward new Lyme injection

    I thought that was a antigen that would fight the infection in the research in the link. In the headline the word treatment is mentioned
  15. M

    UMass works toward new Lyme injection

    But this isnt entirely like a vaccine, I actually think this can be helpful in future
  16. M

    "I couldn't get out of bed for eight months - now I'm a burlesque stripper"

    I really really wish the reporter from the paper read this!
  17. M

    Pre-visit preparation for Dr. KDM.

    He does thyroid tests and some other hormones too I think
  18. M

    My trip to see Professor De Meirleir (long post)

    So a prescription is needed to get it? We will ask at the pharmacy to just in case some is nice...
  19. M

    My trip to see Professor De Meirleir (long post)

    When you iron is that low you can hopefully espect more improvement if you get it up with the new iron, thats good news. My sister was at 3 and she had some improvement when she got that up. Worse for my mom that dont handle any iron and she has cronically low after giving birth to me so I will...
  20. M

    My trip to see Professor De Meirleir (long post)

    Strange that the stool test results was worse than before, sorry for this:( What probiotics have you used?( if you can take). Do you know the name of the iron he found to you?
  21. M

    Dr. Says Lyme disease does not exist

    Following this, good luck!!
  22. M

    My first appointment with KDM

    Hey, I think you was there while I was laying with my IV :) I think its good that the professor prepared you for that you probably will get some herx, and now you know a lot more about your problems. Good luck with treatment! :)
  23. M

    Research showing Lyme patients who don't recover have viruses

    When I am done with the IV I am going to my homeopath which have some experience with lyme patients. She has done miracles for my little daughter after her vaccine damage. I would also recommend to find a good homeopath
  24. M

    Vascular Ultrasonography

    Yes I got the diagnose Raynauds, lots of ME pasients got this because its much bigger chance with ME. It affects the veins into the brain and heart and when the veins in the neck contracts many symtoms get more painful and I function less so after getting aware of this I know more to do about it...
  25. M

    Vascular Ultrasonography

    I remember doing and ultrasound but it was something else too, I dont know what its called. It was at a bigger hospital with specialist. My problem is that the veins are way to small and retracted. After reading on this forum I see that there is medicines that can help with this. I havent...
  26. M

    Vascular Ultrasonography

    I had a vascular study done and I think ME pasients with obvious blood flow problems should do it if your doctor might be able to do something that help you from the results
  27. M

    Difficulty breathing + feeling of "lump" in throat

    Forgot to write that the airhunger became better on Cefuroxime
  28. M

    Difficulty breathing + feeling of "lump" in throat

    Sounds similar to my problem. I have lyme and low vegf and high calcium in the blood which can make these symptoms. My troat and tongue also get without feeling and then I cant swallow, this makes it even harder to breath. Hope you will become better:)
  29. M

    Dr Les Simpson...Able to Identify CFS by Blood Cell Shape

    Then I see, thank you. I have never done that test I think, unless its under different names
  30. M

    Dr Les Simpson...Able to Identify CFS by Blood Cell Shape

    . Mine are also concave and lots of themhad leaky cell wall. My ESR have never been high if it is the test I think it is, CRP in Norwegian? But innflammation tests are often high, the mainstream doc says I have closed inflammation in the body. My immunesystem is quite low so I never had any...