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

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  1. C

    My experience with KDM and Lyme

    I went to KDM as well 2 years ago. He prescribed ABX combined with some other things (including Gammanorm) which caused me to get throat infections up to the point that my tonsils had to be removed. Meanwhile KDM just kept prescribing the same things, while my symptoms did not improve one bit...
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    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    I also donated, the counter is almost at €17,000 now. https://www.gofundme.com/f/gofundmecfs-support-scientific-research-mecfs?utm_source=customer&utm_medium=copy_link&utm_campaign=m_pd+share-sheet
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    Sign up! Your support could help win funding for a game-changing ME/CFS study (Simon McGrath's blog) NEW ACTIVE LINK ADDED - OPEN TO ALL THE WORLD

    I live in the Netherlands but signed up anyway, it's very preliminary anyways so I thought why not, if it might help secure more research it can only be a good thing right?!
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    You + M.E. (International ME/CFS Registry) Website Live!

    This sounds really promising. Shouldn't this post be pinned or something so a lot of people see it and sign up?
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    Who else here is in their 20's?

    I'm 26, came down with CFS 2.5 years ago. I struggle a lot with this too, I'm a student and although I am still able to study parttime, that is pretty much all I'm able to do. And I see all my friends partying, traveling, doing sports, and just enjoying life, all things that I miss a lot. But...
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    Petition to recognize ME in Germany

    Signed it
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    Latest Research out of OMF

    But if the number of patients is low, you still can't know for sure if this holds for all patients right? Maybe the patients tested are only a subset.
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    Second visit to KDM - any advice?

    @Daffodil Thanks, that still sounds as quite a long wait though.. @Thinktank I'm sorry to hear that, I'm also definitely not planning on continuing treatment like this for 4 years if I don't see any improvement. But I also don't want to quit the treatment too soon, because I do want to give it...
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    Second visit to KDM - any advice?

    How do you know that he will be using this once it comes on the market? And any ideas on when this new inhibitor might hit the market?
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    Second visit to KDM - any advice?

    @WoolPippi Haha that is quite a long story, but I really appreciate the extensive explanation of the things you did to get better. Very interesting to read, but it also sounds like a very long and tedious path.. But then it's obviously worth it because it cured you!! This is interesting...
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    Second visit to KDM - any advice?

    @S-VV I went back and KDM told me that it was too soon to see any improvement, because I have a lot of bacteria in my small intestine and it's not so easy to clear those out. So he prescribed me another 2 months of antibiotics, this time a different one though. I'm now taking Xifaxan (550 mg) a...
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    Second visit to KDM - any advice?

    No worries about taking the thread off-topic, it was very interesting to read. I have my appointment on Tuesday, I will let you guys know what treatment he will suggest going forward.
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    Second visit to KDM - any advice?

    I appreciate the replies. And I'm really sorry for those of you who didn't get helped. I also realize it's a risk I'm taking and it's a lot of money for me as well, but right now I really don't see other options, so I'm willing to take the risk. @JadeD thanks for your explanation. Can I ask how...
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    Second visit to KDM - any advice?

    After being out of options in the Netherlands (where I live), I went to see dr. Kenny de Meirleir in Belgium. He diagnosed me with SIBO and said that my symptoms (mostly fatigue and skin rash) are caused by LPS (lipopolysacharoids). He concluded high LPS because sCD14, which he says is a...
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    @alex3619 @Neunistiva Thanks for the explanation. I have another question: I've been diagnosed with CFS/ME in the Netherlands by a center that specializes in this disease, by doing an exercise test. This showed that I had extremely high lactate values in my blood after exercise and it showed...
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    But how do they know whether this graph is specific to CFS? I mean, in the graph it says they have checked this against healthy controls, but have they also checked it against people with other diseases, to see if they don't show the same pattern? Otherwise you might get a lot of false positives...
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    Do my symptoms indicate CFS?

    I'm really sorry to hear that :( Hopefully one day they'll find a cure which can help everybody suffering from this.. I haven't tried much in terms of supplements/medicines yet, so I am still hopeful that either this will still go away on its own (because I've only had it for a little over a...
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    Do my symptoms indicate CFS?

    Taking naps during the day is just impossible for me, I've never in my life been able to sleep during the day. But lying down does help sometimes, but I do think that doing it often during the day impairs my sleep at night, so I will experiment a bit with that. Something else just popped into...
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    Do my symptoms indicate CFS?

    Some other thoughts I've been having: Usually when I take a warm shower I feel better and more energetic while I'm in the shower. Does this have any implications/meaning? In January I had my wisdom teeth removed and I got Ibuprofen as painkiller. In the couple of days of taking that I felt a...
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    Do my symptoms indicate CFS?

    First of all, I want to thank everybody for the replies. It's amazing how many of you take the time to reply, even in such a short timeframe. It means a lot to me :) There is a little bit of mold in my bathroom, but it's not a lot and I'm not even sure whether it was there when I moved in. The...
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    Do my symptoms indicate CFS?

    Hi, I'm new to this forum and just wrote an introduction post for those who want to have some more background information (http://forums.phoenixrising.me/index.php?threads/hi-im-casper-and-im-tired.58366/). I’ve been dealing with fatigue and brain fog since January 2017 and I’m wondering about...