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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. A

    Low levels of Akkermansia

    I just bought pendulum akkermensia and have been taking it for a couple of days now. it is the strangest thing....it gives me a lot of (false?) energy! feels like too much coffee... Not the greatest feeling. I can't really sleep but I also feel good? Or maybe it's just the adrenaline ? anyway...
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    Reality - vs - actually having a child if you have ME/CFS - decisions.....

    I became sick 7 years ago and now have a 7month baby. It was a very hard desicion, i did iv antibiotics and got the go ahead from kdm. Pregnancy was great, i felt so much better and even now nursing i feel OK (compared to before) but it is hård!!!! I feel guilty a lot, my husband does a lot and...
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    Autoimmune Paleo protocol

    I have struggled with My leaky gut for many years, trying everything. Now i have started the autoimmune paleo diet... It has only been à week so this might be to early, but i have not gotten these kinds of results before. The AIP is strick, but we are used to weird food right :) I Will not...
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    Wahls diet, mitochondria

    I would like to try this but i wonder how it adds upp to KDM idea of leaky gut ( as some of you have adressed) I am used to avoid fructose and fruit in general since it is supposed to feed bad bacteria, and keep the diet low in carbs. I eat mostly vegetables and meats, but i eat too much dairy...
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    Antibiotics

    I am now doing IV antibiotics in Belgium with KDM, i hvae been feeling great!! dizzy but my energy is better than it has been all year, this might just be because of the anti infalamtory mecanisms of the antibiotics... i am in week 3 of 6, but i have no real hope of getting rid of the borrelia...
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    Off to see KDM and starting IV antibiotics, right or wrong?

    i will pay 160 euro per week, the real cost will be housing and transportation, i will be doing 6 weeks so that is quite a lot but not the most i have spent of this dammed illness. i am looking at housing now, but mostly soo beat, i really pushed myself this weekend and i am not even close to...
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    Off to see KDM and starting IV antibiotics, right or wrong?

    Biofilm defense? KDM has not talked about this, I am on GCMAF, LDN, and probiotics, ( and tons of other supplements stuff) where can i get this biofilm defense? sometime i wish i could just take an antiviral/antibiotic mega shower and be done with it !
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    Off to see KDM and starting IV antibiotics, right or wrong?

    i am not being treated for the HHV-6, i think they view this as the lesser evil and have focused on the lyme. My swedish doctor even said that i should not worry about it since everyone has it , but KDM says that although everyone has it , people with ME have it in an active form and this is...
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    Off to see KDM and starting IV antibiotics, right or wrong?

    I am starting a 6 week IV antibiotic treatment in Belgium at Himmunitas ( kenny de meirlers clinic) I am doing this for Borrelia ( lyme). However, i am getting cold feet. In Sweden they say tha you can have antibodies against Borrelia even if the active Borrelia is gone, which means that...
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    Anyone want to sell their Gupta program?

    Sure, i will sell mine, where in the world are you? where can i send it to?
  11. A

    Dieting

    i have also gained weight after becoming sick, and just like you i crash after 2 -3 days of eating less. I will eat the same as when i don't diet, just less ( low carb, no sugar, no fruit, no casein, no gluten, lots of veg and meat) I am trying not to bet stuck on my weight since being healthy...
  12. A

    The De Meirleir Experience

    I was diagnosed with Brucella by De Meirler and currently on antibiotics, not sure how this will affect my disease in the long run, but he told me that many of his patients had other pathogens
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    The De Meirleir Experience

    I have been a patient of KDM for about a year and a half. He is very effective and this can be seen as cold but i like that he did not ask me a lot of questions. In the past doctors have asked me and i can tell you how i feel for hours. KDM took extensive lab testing and then deducted from...
  14. A

    Brucella! How about You?

    Alice- it was a a simple blood test, that i took for KDM ( professor Kenny de Meirler) I tested for several different (about 10) pathogens and the whole test was quite expensive, about 1000 euro. It does makes sense timewise that i have Brucella but i have some other symptoms that are so...
  15. A

    Brucella! How about You?

    so i just got my test results back from KDM, it turns out i have Brucella in me, ( bacteria you get from eating infected raw cheese or milk, so i guess that homemade cheese in Bolivia was not such a good idea.....) KDM is happy and feels like this is the answer to my kind of CFS, i am not so...
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    Possible cause found? Alpha or Beta Radiation.

    How does one test for this. I live i Uppsala Sweden and we were hit had during Chenobyl cause the winds blew our way and then i rained. Many still regards muhsrooms and wild meat from the area unsafe to eat but i have eaten it all my life. I was a small child when it happened. if it could...
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    What and how to cook, when you can't cook

    I use a lot of frozen veggies. i just heat up water in the kettle and pour the boiling water over the veggies and let them sit for awhile, that makes them perfect, no stove needed. i have a lot of cottage cheese when my tummy can tolerate dairy... i mix this with yoghurt and some cinamon and...
  18. A

    Tired and sleeping in dreams

    HA ha, i double sleep a lot recently! my dreams are so vivid and sometimes i feel like i live more in my dreams than in my real ME life... but double sleeping is new for me too... it feels strange... mostly i feel bad for my body, its like it is not getting enough sleep even when i am sleeping...
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    Children-pregnancy- any experience? Help!

    CAcfs: this resonates with me, i spend a lot of time trying to picture what my life would be with a child, and planning financially ( i have a baby fund, but we will se if it will be a travel fund if i leave the baby plans) growing up both of my parents were very busy with their carreers and...
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    Fecal Transplants: Seriously, What Do We Think?

    i talked about fecal transplants with KDM since my mom ( a doctor) read a lot of intresting reseach about it, he said that it would help but only for 10 weeks about, then the faulty bacteria would grow back...
  21. A

    trying a new method after being diagnosed with protomyxzoa

    i ususally eat a lot of fats, nuts, olive olil and a lot of protein, i also take high doses of Omega 3, but the last week i ran out of Omega 3 and have been feeling better than i have in several weeks, so i might give the low fat diet a chance... how much fat are you allowed to eat? keep us...
  22. A

    Children-pregnancy- any experience? Help!

    there are so many unknows in this disease... I have only been sick 3 years, and part of me realizes that i can wait... but i know that this disease breaks down the body and part of me wants the potential baby to get as much as the "pre ME wombs" as possible... and even if i get into...
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    Children-pregnancy- any experience? Help!

    I have read a study, it is an old study with only 64 participants and they did not controll the age factor, they also expressed some concern that the babies were mentally challenged...but they did not follow up to see. Justy: are your kids healthy? I am quite high functioning, but i have...
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    Children-pregnancy- any experience? Help!

    I am worried about miscarriages aswell... i have heard that ME sufferers loose almost 50% of pregnancies before week 15, some think this is because of the immunesystem being in the wrong way ( th2 or th1 i always forget which one..) my husband knows that he would have to take a lot of the...
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    Did KDM's treatment help you or did you get worse?

    thank you ! that was what i thought it was but i was not 100% sure, i have no clue if it is making me feel better, i have been feeling so shitty last 3 weeks, but i have been stressing and working...
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    Children-pregnancy- any experience? Help!

    so many things to take into consideration. My parents are both ob gyn and they say that science changes, before you were adviced against having kids if you were diabetic or had heart problems, but now its ok. But there are no reasech being done on this (understadably, first things first, what is...
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    Salty Foods

    edamame, tomatoes with salt and nuts
  28. A

    Children-pregnancy- any experience? Help!

    I have been sick for 3 years and i have always wanted children. I don't know how to formulate this question... does anyone out there have kids? did you have them before or after you got sick? are the kids sick? or have autism or aspergergs? I have really been trying everything to get well so...
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    What is CFS/ME treatment like in Sweden? Is there a specialist I can see?

    Welcome to Sweden! I am swedish and have lived in Uppsala for almost 10 years now. I have not had very good experiences with swedish doctors. Some do believe that ME exist but can offer no treatment, only B12 shots and maybe an appointment for the speciallist Gottfries clinic. most ME patients...
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    Did KDM's treatment help you or did you get worse?

    I am "under his wings "now and taking GcMAF, 4ME, lactoferring, antibiotics and probiotics, and b12, i have seen an improvement , but i have just started and my disease fluctuates a bit i am so greatful in having a doctor who does testing and interprets the results, before i had to be my own...