Hi, I'm new to this forum and this is my first post! I come from Malta. I hope it's ok that I'm posting in English and your browser will translate into Dutch.
I have been sick for 18 years and went to De Meirleir for the first time last November. I got all my results and visited him again at the end of January. He says that I have very high levels of inflammation. His treatment for me includes antibiotics and probiotics; GcMAF, Nexavir, VitB12 injections, Chlorella, Mesazaline, Creon and Calcium Carbonate. It's quite a lot!!
So far I've had 3 shots of GcMAF and finished my first course of AB's. I am having a lot of problems with an irritated gut due to the AB's and I just can't seem to settle down my digestive system. I'm also following the strict diet of Christine Tobback. It's a lot for my body to deal with at one go!! I just wish that my digestive system would improve a little before I have to start the next course of AB's !!
My experience with DML and questions
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Hey filfla4,
It's very normal that you have more problems or complaints the first 6 months of the treatment. Most patients of De Meirleir go a few steps backwards at the start of their treatment. How long it takes before there is improvement, depends on the patient and his level of illness.
Do you come to Brussels every time to see De Meirleir? It must be a very exhausting trip for you.
Are you xmrv positive? Did De Meirleir find any allergies?
Thank you for sharing your story, please keep on sharing it in the future. You can always open your own topic.
It's very normal that you have more problems or complaints the first 6 months of the treatment. Most patients of De Meirleir go a few steps backwards at the start of their treatment. How long it takes before there is improvement, depends on the patient and his level of illness.
Do you come to Brussels every time to see De Meirleir? It must be a very exhausting trip for you.
Are you xmrv positive? Did De Meirleir find any allergies?
Thank you for sharing your story, please keep on sharing it in the future. You can always open your own topic.
Hi MJ,
Thanks for responding so quickly. I hope the translator is doing it's job and there will be nothing lost in translation!!
I have been to see De Meirleir twice so far: in November to get all the tests done and in January to get my results and treatment protocol and also to see Christine Tobback. I also got all my medicines delivered to Himmunitas, so I brought everything back home with me, for three months. Yes travelling is very exhausting but thankfully my husband comes with me and that helps a lot. I don't know if I need to travel to Brussels again after three months or whether I will have a telephone consultation. I guess that depends on how well I'm doing on the treatment and whether he needs to repeat some of the tests.
So far I am XMRV negative by pcr/culture. My serology result is not in yet. However, based on my level of inflammation and other results, together with my medical history, he has recommended GcMAF and Nexavir too.
Yes, he did find many intolerances, although nothing had ever shown up on blood tests I had done locally. I am very (very!) lactose intolerant. I am slightly fructose intolerant. Both of these were done by hydrogen breath test. On the blood tests sent to Bio Tek in the U.S. I am allergic to eggs and oysters. Apart from all this, Christine Tobback also recommended a diet low in histamines. So my diet is now very limited!! Her diet is so difficult!
Are you also having treatment from De Meirleir? Are you on Tobback's diet? Are you XMRV positive? So many questions!!
It's great to be able to discuss all this with other patients of De Meirleir! Thanks!!
Thanks for responding so quickly. I hope the translator is doing it's job and there will be nothing lost in translation!!
I have been to see De Meirleir twice so far: in November to get all the tests done and in January to get my results and treatment protocol and also to see Christine Tobback. I also got all my medicines delivered to Himmunitas, so I brought everything back home with me, for three months. Yes travelling is very exhausting but thankfully my husband comes with me and that helps a lot. I don't know if I need to travel to Brussels again after three months or whether I will have a telephone consultation. I guess that depends on how well I'm doing on the treatment and whether he needs to repeat some of the tests.
So far I am XMRV negative by pcr/culture. My serology result is not in yet. However, based on my level of inflammation and other results, together with my medical history, he has recommended GcMAF and Nexavir too.
Yes, he did find many intolerances, although nothing had ever shown up on blood tests I had done locally. I am very (very!) lactose intolerant. I am slightly fructose intolerant. Both of these were done by hydrogen breath test. On the blood tests sent to Bio Tek in the U.S. I am allergic to eggs and oysters. Apart from all this, Christine Tobback also recommended a diet low in histamines. So my diet is now very limited!! Her diet is so difficult!
Are you also having treatment from De Meirleir? Are you on Tobback's diet? Are you XMRV positive? So many questions!!
It's great to be able to discuss all this with other patients of De Meirleir! Thanks!!