• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. patient.journey

    Is it a new disease or its CFS ?

    Hello everyone Am fine and yes am still a live 😊 Hopefully you all stay positive And strong
  2. patient.journey

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Hi sushi its always great talking to you. I did find a page but what i need is a good source for chambers which i can buy online to use at my home, so if you can lead me, i would be thankful. Regards,
  3. patient.journey

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Hello everyone Hope you are all doing well Where can I buy a Hbot chamber to be used in my house ? And how would I know if the quality of the product is good ? if anyone have a history In buying a This kind of chamber and he/she had the chance to go through the choices, please share some...
  4. patient.journey

    Dr. Ron Davis Presents ME/CFS Research at the 2018 IIMEC Conference

    Guys look at this , I don’t know if any one posted this here boefore , but from min 25-50 he was talking about infections and immune testing they made and there are some good data “ wired stuff is the Trypanosoma finding” https://m.youtube.com/watch?time_continue=1&v=WmI5Ri0V51U
  5. patient.journey

    New cheaper Gcmaf Product: Keto Keri

    Tell me about your trial with rerum ? Am welling to try it
  6. patient.journey

    New gcmaf or something else ?

    Please update us
  7. patient.journey

    Clostridium Butyricum - A Game Changer?

    I payed extra for USPS but it's not as fast as i thought and I think that your choice doesn't work in my country , I took the most expensive one and it's still not shipped since a week approximately
  8. patient.journey

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    I saw this before and I started my treatment after years of reading and the step to start ARV is not easy for me due multiple stuff 1) the resistance chance if it was a hitting one particularl infection. 2) the sourcing as I might not be able to complete my trial. 3) the cost of the...
  9. patient.journey

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Am on truvadu since couple of months 1) it took my general health from 5-8.5 as an average , less neurological problems , higher body performance which leads to normal days out but without extra walking or doing any sports or I will be down with pain and lymph nodes inflammation, I had multiple...
  10. patient.journey

    Clostridium Butyricum - A Game Changer?

    Made an order of a seller with multi products and high sales , but it seems it will take a month too
  11. patient.journey

    ALS diagnosed !!

    Test
  12. patient.journey

    ALS diagnosed !!

    @Gingergrrl am sorry for your case , and am sorry I don't know how you guys decide my answer to parts and replay to it My infection disease team which have multiple doctors in the same hospital loves to show my CFS weird case to thier students because they didn't see any one before in young men...
  13. patient.journey

    ALS diagnosed !!

    I developed the positive ANA after 3 years from getting the virus and starting my CFS case , it wasn't positive before and now it's always at 1:160 and did goes up twice while I was under the test to 320 and 640 ! I was tested for a hall panel multiple times and nothing was revealed + I don't...
  14. patient.journey

    ALS diagnosed !!

    I came back here to thanks all who cared and replied when I posted my thread about my diagnose ! It seems that multiple symptoms with the doctors non knowledge of what is happening do lead to multiple diagnoses unfortunately! Between lupus , CFS , Fibromyalgia and ALS ,, Diagnose do change...
  15. patient.journey

    New gcmaf or something else ?

    @Sushi as u used to use gcmaf , did you consider bravo gcmaf or the probiotics which multiple companies are selling with yogurt or with out ? A you tube page show a home made gcmaf yogurt ? Does that consider to be gcmaf ? And could it lead to any benefit if some one did try it !
  16. patient.journey

    New gcmaf or something else ?

    Most of the probiotics which come under naturally category does have the Colostrum element so what type of screening should I ask about ? Did any one tried the Japanese source ? As I read the main source which was closed wasn't safe either !
  17. patient.journey

    New gcmaf or something else ?

    T The problem with those company that they are small and we can't be sure how much safety and clean are those products ! Is there any company of this which you provide had any success with cfs patients we know ? Thanks again
  18. patient.journey

    New gcmaf or something else ?

    Dear hip I did read that the cream product is not working for the most people ! About goleic gmaf or the Japanese product , it's not well understood if there is any human components in the material they are providing or is it natural and as I see my case of CFS developed after an unknown...
  19. patient.journey

    New gcmaf or something else ?

    I sent them an email and here is the question and the answer @Hip @Sushi "1)what the difference between your product and gcmaf ? 2) what is your product ingredients and does it have any human components or not ? I will be waiting the response as soon as possible so I can place my order !"...
  20. patient.journey

    New gcmaf or something else ?

    What a great replay Regards
  21. patient.journey

    New gcmaf or something else ?

    I was searching for new gcmaf source expect the Japanese material because as I read it's from human blood and I came into a new website with a new product which they say it's a new version of gcmaf ! I want your opinion if some one heard or tried it and what do you think of it ...
  22. patient.journey

    Clostridium Butyricum - A Game Changer?

    I want to get this product but there are different sellers on ebay which seems to be individuals ! Did any one tried any one on specific? Regards
  23. patient.journey

    Doctor in Houston

    Can I have some names of doctors in Houston! CFS or LLMD doctor who can ran some good tests in my one month visit and might be take one more step into treatment plan Regards
  24. patient.journey

    Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms

    Don't waste your time with those viruses I am hsv1,2 negative I have the rest since I was young + I was tested negative IGM for them in the acute phase
  25. patient.journey

    Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms

    the problem is with the medical system My main infection in 2011 is so infectious that I can see the first symptoms which hit me for one year on other patients when we have a close contact but 95% have mild acute phase and different long term issues if they have any ! When you are hit with a...
  26. patient.journey

    Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms

    This kind of virus come with an acute period , most of the patients getting this doesn't show this phase of it ,,
  27. patient.journey

    Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms

    I saw the page but there is no test lists on the website Do you really think this virus in as entro virus ?
  28. patient.journey

    Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms

    As usual Hip you have always do a great job ! I will do it in your way 1) patients 1 neurological problems 2) patients 2 stomach aches since 6 years , mouth ulcers and lack of fever since he got the infection 3) patients 3 joint pains , fatiuge and she is always dealing with sore throat...
  29. patient.journey

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    DTG Is Dolutegravir ? Do you know any one who did try this combination before ? Am having severe flu for the first time in couple of years and for the first time in 7 years I got fever ! It's between 37.6-38 while I never had any fever more than 37.1 since the first month of this nightmare...
  30. patient.journey

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Truvadu comes with one dosage , I will see how it will go and might add isentress to it if nothing obvious changed until the 6th week