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

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Search results

  1. Clodomir

    Post Lyme Treatment with KDM

    Hi everyone, KDM has prescribed DSF for me as post lyme treatment... And it didn't go well... DSF is a drug used in the treatment of alcoholism (alcohol aversion therapy) , and even If I don't drink alcohol, I had all the symptoms of using DSF while drinking (am I oversensitive?): sweating...
  2. Clodomir

    New type of treatment for Crohn’s disease is approved by NICE: Ustekinumab

    FDA Approves STELARA® (Ustekinumab) for Treatment of Adults With Moderately to Severely Active Crohn’s Disease Horsham, Pa., September 26, 2016 ― Janssen Biotech, Inc., announced today that the U.S. Food and Drug Administration (FDA) has approved STELARA® (ustekinumab) for the treatment of...
  3. Clodomir

    Few tips, if you come for IV treatment

    Make a mistake :bang-head:: it is not: "Price per day: 3, 97 euros but reimbursed: 29, 89 euros. So only 10 euros to pay", but 39,97.... the rest is correct. :)
  4. Clodomir

    Anyone around in Brussels June 9th - July 19th?

    Hi Justy, Happy to see that it goes well. I will ask my husband today. Maybe we can come to visit you sunday late in the afternoon... only on hour because I am tired for the moment (now) maybe sunday I will be better. I tell you tonight. Clodomir
  5. Clodomir

    9 Doctors and No Concrete Diagnosis

    Hi, I was also diagnosed with CFS. It came very suddenly, after a vaccine. After that, my diagnose change in lyme chronic disease. The vaccine was the trigger that wake up my lyme problem. Maybe Mold is the same for you... I had to do twice the test: first was negative, then positive. Be...
  6. Clodomir

    Dutch News: "Recognized or Misunderstood Disease: Suffering is the Same"

    Hi, I just read the article and found the Barbara story so unbelievable:bang-head:.... I read also the comments and I can add some more informations: In Belgium, we had a GET program, who was abandoned (2012-2013) because it doesn't work (follow the AA comment in deutsch). Now the program...
  7. Clodomir

    What do you have for Breakfast?

    All my pill and drops, a herbal infusion with some rice sugar (fructose problem) a non gluten "cracotte" or a toast with chicken ham or "caprice des dieux" (love that cheese, even it is not organic) with my TV (netflix) series or the radio (not music) and my fire just to revived my bones...:)...
  8. Clodomir

    IV treatment KDM

    Hi, @justy and @MadeleineKM Just post on the group a few tips who can interest "non belgian" people... Hope I am "clear" with my explanations... my english is not that good clodomir
  9. Clodomir

    Few tips, if you come for IV treatment

    Hi everyone, I already did the IV Treatment "journey" a year ago. I am better. For many non belgian and even belgian, it is not so easy, going to the clinic, have the IV, find a taxi, etc... But there are some cheap solutions.... Some patient, do the IV at home with a nurse... coming once a...
  10. Clodomir

    Anyone around in Brussels June 9th - July 19th?

    will be in Brussel the week of the 15 june. After that, I am going to France. So, if I have my chauffeur, we can meet. Clodomir
  11. Clodomir

    IV treatment KDM

    I will check with my social security what is possible and at what cost.
  12. Clodomir

    IV treatment KDM

    Hi, You can maybe find your apartment on Immoweb.be or zimmo.be You have to choose your location: Never-over-hembeek of Vilvoorde or a little bit far You will find a few things, but it is not easy to find something only for 3 month... and very expensive You can also ask the nurses at KDM...
  13. Clodomir

    IV treatment KDM

    @MadeleineKM, where do you come from? and are you able to travel "alone", If yes, you can find cheaper place but not near the clinic. You can take the bus (who is near the clinic). Read my advices/tips in the KDM's group. If you have any question, ask. I live in Brussel and I have already done...
  14. Clodomir

    Prostaglandine E2

    Hi everyone, Thanks a lot for all this information. KDM will give me something but I suspect it will be AINS.... (indometacin in suppository... yeah!!!:wide-eyed:) Not sure: I will have his protocol next week. I already try: IV injection, pills, drops, muscular injection, sub cutaneous...
  15. Clodomir

    Prostaglandine E2

    Hi, My prostaglandine E2 is very, very high: 21,12 (normally reference range: 0,10 and 2,81)... :meh: and it was in december 2014, now I think it is worse... I have of course a lot of inflammation... of course. I have the "lyme protocol": Samento, Banderol, etc... I just want to know if someone...
  16. Clodomir

    "Real Housewives of Beverly Hills" star Yolanda Foster Battling Lyme disease

    Alec Baldwin suffer also from Lyme disease...
  17. Clodomir

    In Belgium to see KDM

    Hi Szenn, It is now more than a year that I began KDM treatment, and I am better, with some ups and down. I slow down with the buhner's protocol and lots of herx disappear. My husband has also Lyme and he is much much better, but I was very ill. So maybe in 2 or 3 year, I will be back to...
  18. Clodomir

    Samento - 7 drops too far?

    @szenn KDM didn't give it to you? See in PM Clodomir
  19. Clodomir

    Really need you guys opinion re: upsetting doctor situation!!!

    @Gingergrrl43 Hi, I have different doctors for different things: ophthalmologist, gynecologist, otorynolingologist, etc...I, always, say to her/him (the first time I met them) that I have Lyme disease, but that's all. If they ask me more: what kind of analysis, tests, etc... I always say: "I...
  20. Clodomir

    IV clinic costs.

    hi everyone, I don't know if you are aware of brussels airplane problems... Due to a stupid politician, all the plane goes through the city and around, now :mad:... before they went through certain places (with no one below). Now no more (since january)... so try to find a quiet place is a...
  21. Clodomir

    IV clinic costs.

    Taxi are quite expensive in Belgium. A taxi will cost from schaerbeek to the clinic : 20-30 euros one way but you can ask if they can do some special rate... The taxis i use: taxis bleus www.taxisbleus.be Be careful, you can't take it from the airport... ( belgium specialities for making easy...
  22. Clodomir

    IV clinic costs.

    http://www.brusselslife.be/fr/article/restaurants-vegetariens-a-bruxelles http://www.bioguide.be/restaurants http://www.cityplug.com/fr/Bruxelles/places/?what=Cuisine%20végétarienne Sorry but it is in french...
  23. Clodomir

    IV clinic costs.

    You can find quinoa in big store: delhaize, carrefour. In those store you have organic vegetables also: it is written BIO on the vegetable. Delhaize has a lot of choice. I will check if i can find some vegetarian restaurant. I am always sick when i eat too much vegetable....:wide-eyed: I am a...
  24. Clodomir

    Off to see KDM and starting IV antibiotics, right or wrong?

    @Valentijn Happy to see that you are better! So do i! Yesss! You will see in a few month that it is slowly ( very slowly) going better and better. Sometimes little crashes, but less and less. For me it is the beginning of something new, the end of the tunnel. All the best
  25. Clodomir

    IV clinic costs.

    After 12 weeks, we all are on the herbal protocol. No more ABX. Herbal protocol has the same effects than ABX, but it hasn't the same strenght. It is very softer for the body. ABX is like a booster. It is a little bit like a plane: need lots of fuel to liftoff (ABX), but when your in the sky...
  26. Clodomir

    IV clinic costs.

    Just a few things. I am preparing my trip to the states, so i have some questions about food, etc... So big food shops in belgium are delhaize ( very fresh but a bit more expensive than the other) Carrefour Cora And colruyt ( less expensive but very fresh. The shop isn't really good looking...
  27. Clodomir

    IV clinic costs.

    all the people in the room will be like you. When I was there there was a woman who was theft or nearly, so I always speak just in front of her to be sure that she understand. In the room she share our experiences, and it is sometime funny. Oh your mum is allowed to come with you in the room...
  28. Clodomir

    IV clinic costs.

    Some people in the IV room speak english. so if they are speaking to you, just tell them that you are irish and they will switch to english if they can. Being there everyday, give you the feeling of being part of a big family. Don't forget to say hello, every time you enter the room or when...
  29. Clodomir

    IV clinic costs.

    lots of people speak or try to speak english in Belgium. We have 3 languages: french, flemish and german... so we use to speak other languages. All the people in the buses trams speak english (very little but they are trained to answer basic questions and are very friendly). don't be afraid...