Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Desperately need help! Back to square one...

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by AkeBono, Apr 24, 2017.

  1. AkeBono

    AkeBono

    Messages:
    77
    Likes:
    24
    Im really really desperate...Im back to square one after 2-3 years of lite recovery ...almost bedbound lost 10 kg...intestines not moving...full bloated intestines...depression doomed anxiety after meals...cant have BM... each day is a real battle...cant sleep at night being super-activated from toxins.

    - Where should I start ? Again?
    - To whom I can talk In Europe to really help me? Like a good integrative doctor?
    - Is there anyone who can guide me to this? Maybe one of old members?
    - Anyone who can advise or have similar experience?

    I relapse big time last december 2016 almost died again and never recovered at least 10 % from what seemed to be massive infection, reactivation. Strep like simptoms lactic acidosis VERY BAD, Giardia again, colonic bacteria and surprise worms back again. I was 75% of my capacity last december till crisis but now Im back to square one as 5-7 years ago.
    Sincedecember I can hardly tolerate any supplements especially those with lactose starch, maltodextrine etc. Not even vitamin C which I was able to take previously.
    It seems like its fermenting everyhting? Almost. Especially after carbs Chicken red meat etc a develop all the simptoms?
    Some toxins especially after eating make me superdepressed almost instant, a doomed feeling and fermenting a lot in the upper right and small intestines. I thouhgt of Giardia but guess is not the only one also a bacteria or maybe Cryptosporidium. or Blasto or bacterial...

    Anyone had any idea or similar experience? I am really desperate...please see bellow message for some details. Thank you
     
    Last edited: Apr 24, 2017
    Notjustfatigue likes this.
  2. AkeBono

    AkeBono

    Messages:
    77
    Likes:
    24
    5-7 years ago after round cipro and pneumonia jaundice I develop SIBO and colonic bacteria overgrowht (im thinking of Enteroccocus Streptococus Clostridia after simptoms). Classic Medical IBS Unknown cause and so on...Toxic Megacolon made worst by carbs fibers etc to the point...Several bout of never ending enterocolithis and ENT neverending issues.

    What I know till now: (but I dont want to impose these diagnostics)
    - Giardia chronic reactivation or Cryptosporidium? promoting SIBO SIFO fermentation
    - SIBO (some says also yeast?)
    - repetead Strep throat not A (maybe its another bacteria they cant test here like Enterococus)
    - Ascaris (by what I expelled almost daily one month ago, test never showed)
    Cant take Albenda due to lactose which is fermenting like crazy giving me
    SUPER DEPRESSED DOOMED FEELING CRYING ETC (Giardia, Enterococus, Streptococus?)
    - H2S / lactic acid bacteria by simptoms (also giardia produce large amount of lactate...ethanol)
    - other colonic bacteria/archae

    After last december developer JAUNDICE AGAIN !!! and something like a chist in the liver, left liver is affected.

    I really want to have a stool test. If I use material from the enema does this help me somehow in the stool tests? I have a real issue with stool cant have BM by my own. Left colon seems “SO LAZY” I can hardly farth. I guess if from some toxic gas that burns or make colon inert - felt is lactate, acid lactic, h2s.... If I use material from the enema does this help me somehow in the stool tests?
    Many many thanks for your inputs....
     
    Notjustfatigue likes this.
  3. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

    Messages:
    625
    Likes:
    774
    USA
    Last edited: Apr 24, 2017
    Lolinda, echobravo and Helen like this.
  4. Bansaw

    Bansaw Senior Member

    Messages:
    377
    Likes:
    205
    Have you seen Dr Meirleir in Belgium?
     
    Notjustfatigue likes this.
  5. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,013
    Likes:
    2,810
    Vancouver, British Columbia
    Have you tried using probiotics?
     
    Notjustfatigue likes this.
  6. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

    Messages:
    625
    Likes:
    774
    USA
    Probiotics is like bailing water out of a boat that has holes in the bottom with a bucket. You first have to patch the holes (parasites, lectins, allergies or whatever is irritating the gut)
     
    Lolinda and Notjustfatigue like this.
  7. Shoshana

    Shoshana Northern USA

    Messages:
    1,294
    Likes:
    3,955
    Northern USA
    There is a support group in Spain. I wonder if they would have any ideas or doctors to recommend for you?

    Sorry you are having such a terrible time.
     
    Notjustfatigue likes this.
  8. Timaca

    Timaca Senior Member

    Messages:
    634
    Likes:
    294
    I am sorry for your problems.

    I wonder if Manuka Honey would help you. With your issues, you might want to make sure a doctor would be okay with it, but it seems to kill off pathogens (on wounds) and apparently is even helpful for C. difficile. See this link.

    I've been taking a very small amount (less than 1 teaspoon) for the last 50 or so days. I started out with even less than that...about 1/4 teaspoon because I am intolerant of so many things. It seems to have helped my GI issues. Things aren't perfect in that area, but better than they used to be. Maybe it will help you.

    Hang in there.....
     
    Notjustfatigue likes this.
  9. AkeBono

    AkeBono

    Messages:
    77
    Likes:
    24
    Hello guys many thanks for your feedback and encouragement!
    @Sherpa - youre totally right. i dont know where to start...everything with lactose starch maltose etc is fermenting like crazy in my upper abdomen and so on...including supplements. im wondering if I developed yeast again or a bacteria in duodenum that ferment everyhting ? before december i could tolerate vit.C for example now its fermenting also? crazy stuff...pain ar burning in feet and hands...

    simptoms are mixing and returning sometimes even when Im not eating...? i mean i eat something to test like rice etc i feel immediatly something fermenting upper right and pain feet and depression and tired and burning feet...like giardia toxins but also lactic acid bacteria or something...

    @Bansaw - about dr.Meirleir I was thinking about him. do you think he can help me with this issues? Have you used his services? I am really interested in someone which can help.

    Each time the crisis started with heavy constipation, giardia flare like and a streptococus like in nose throat...it really sucks each time i was about to die because of toxins cytokines lactic acid I dont know...simptoms sound similar with lactic acidosis...
     
  10. AkeBono

    AkeBono

    Messages:
    77
    Likes:
    24
    @Timaca

    "I wonder if Manuka Honey would help you. With your issues, you might want to make sure a doctor would be okay with it, but it seems to kill off pathogens (on wounds) and apparently is even helpful for C. difficile. See this link."

    Not for me really...I cant take ANY sugar or any kind...or substitute...i have a massive reaction from the mouth nose including...
     
    Timaca likes this.
  11. AkeBono

    AkeBono

    Messages:
    77
    Likes:
    24
    what is this group shosona?
     
  12. Shoshana

    Shoshana Northern USA

    Messages:
    1,294
    Likes:
    3,955
    Northern USA
    @AkeBono

    Hello!
    I have heard great things about Dr Meirleir in Belgium, so I would seriously try to get in contact with them, to see if you can get on their list, if possible .

    Of course, I do not know if he can help you, but he did help others very much. I would see him if I personally could.


    I will find out for you, the contacts with the group in Spain. I think it is a well organized very supportive support group, but I don't know more about it, or if they recommend doctors or not. I will find out for you.

    Shoshana
     
    Notjustfatigue likes this.
  13. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

    Messages:
    625
    Likes:
    774
    USA
  14. Shoshana

    Shoshana Northern USA

    Messages:
    1,294
    Likes:
    3,955
    Northern USA
    I am going to tag @Notjustfatigue

    so he can find this post for you, Akebono.

    I thought it was in the introductions posts, so I had told him that , and he might look there to say hello to you.
    He is in Spain.
     
    Notjustfatigue likes this.
  15. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,211
    Cincinnati, OH, USA
    #1 would be to get your bowels moving. If you take enough magnesium, they will start moving again. It's possible you're deficient in magnesium anyway, as many of us with ME are.

    You can get various forms of pure magnesium powder with no additives from Purebulk.com. I use their magnesium glycinate. You mix the powder in water and drink it.

    If that's not going well, there are transdermal options such as magnesium oil or soaking in epsom salts (magnesium sulfate).

    Like with any supplement, it's best to start small and gradually work up to higher amounts over a number of days, until your bowels are moving again. Magnesium is a co-factor for many reactions in the body, so if you're deficient, this should make you feel better in several areas, such as reducing muscle aches, feeling more relaxed and calm, sleeping better, etc.

    For reference, as to what is "enough", 300-400mg is the minimum RDA, I often see suggestions for the average deficient person to take 800mg. I take 2800mg in four divided doses throughout the day.

    If you divide the doses, it absorbs better and you can get more in.
     
    Notjustfatigue and Shoshana like this.
  16. Notjustfatigue

    Notjustfatigue

    Messages:
    24
    Likes:
    71
    Asturias, Spain
    @AkeBono First of all, wellcome back again.

    I don´t know where you exactly live. I know some good doctors all around Europe. As mentioned, KDM in Belgium is a very good option. Some other good options are Jean Monro from Breakspear Medical Group and Sarah Myhill in UK. I think Dr. Dietrich Klighardt do have an office in Netherland, may be?. I should check it but he would be also a great option. In Spain best option for your case i think would be Josepa Rigau in Tarragona.

    I know some other names depending on where you are and how long would you travel.

    As recommended above, magnesium will be so good for your bowel movings.

    Hope it helps.

    As soon as you tell me where you from and how long are you willing to travel, i would try to give some more names or more detais about given.

    Kind Regards and hope you get better.
     
    AkeBono and Shoshana like this.
  17. Thinktank

    Thinktank Senior Member

    Messages:
    1,167
    Likes:
    1,266
    Europe + Asia
    KDM focuses treatment a lot on the gut so he'd be your best option if you live in Europe.

    But before going to see him, maybe visit a gastroenterologist and ask for a colonoscopy + SIBO breath testing.
    Perhaps rifaximin + a prokinetic like motilium to get your bowels moving might just be the thing that you need.
     
    Shoshana likes this.
  18. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    330
    Likes:
    449
    Would you tell more about your experiences? -Here or in PM...
    In particular, I am interested in time frames. When trying sthg new, I feel it is one of the most important things to know how long one should hope for effects... Currently, I am hoping. A lot ... :) :)

    Also, I am missing discussion on this topic on PR! where are all the Gundry people? Sherpa, your post was one of the precious few that showed up searching for Gundry on PR. Maybe there is another website where people discuss how it goes?

    Anyone interested in Dr Gundrys approach, this is the research on which it is based:
    http://circ.ahajournals.org/content/129/Suppl_1/AP354
    I recommend anyone reading this: it is the simplest, shortest and most information-rich source I found!
    I did the adiponectin test (thanks @Emootje !!) and had whooping values: 27.6 µg/mL (2.0-13.9). And I have several TNF measurements...
     
    Emootje and Gondwanaland like this.
  19. AkeBono

    AkeBono

    Messages:
    77
    Likes:
    24
    many thanks for your answer @caledonia !

    If that's not going well, there are transdermal options such as magnesium oil or soaking in epsom salts (magnesium sulfate).- I better try this option magnesium chloride oil as I cant take any magnesium by mouth? I feel it is fermenting and creating more problem. Something is fermenting in upper intestines and after that in colon cecum. I will try again with Ca, Mg Solaray to see if any change?

    Like with any supplement, it's best to start small and gradually work up to higher amounts over a number of days, until your bowels are moving again. Magnesium is a co-factor for many reactions in the body, so if you're deficient, this should make you feel better in several areas, such as reducing muscle aches, feeling more relaxed and calm, sleeping better, etc. - I have to try again last time felt bit relief with anxiety but was fermenting like crazy? also tried a bisglicinate form.

    I really dont know where to go next - what type of bacteria is fermenting almost anything vit.C magnesium even some pancreatine? never happened before...I suspect enterococus streptococus but could be different...giardia parasites candida for sure...strep again
     
  20. AkeBono

    AkeBono

    Messages:
    77
    Likes:
    24
    Hi @Thinkthank many thanks for you answer,

    I will try motilium again to see if helps but my main issue is I AM FERMENTING almost everything in the upper right abd. Any supplement medicine that contains lactose starch...you name it...Unfortunately Gastro here offered only limited information like "yes you have gastritis or stuff like that"...I asked the last one (paid privately from my pocket again) to test for malabsoprtion cause had it years ago and he said its not the case...chronic giardia or h.pilory or sibo do that in duodenum...

    Ive tried also DULCOLAX tablets...same story...they reach left colon down and stopped...its unbeliveable...I think its a cecum disbiosis also but nobody can test it here...

    I did have colonoscopy twice but they cant perfom it with the powder stuff...i was fermenting it like crazy got SUPERBLOATED and YELLOWISH FACE TOXIC and I could pas any gass !!! they finally did it with enemas ...it was quite humiliating...they dont understand a thing of fermentation stuff...my left colon got superbloated and no gas.

    they only time i can pass gas is when i felt something is emptying upper right and then in like 2-3 minutes I can pass gas. I believe its from giardia stuff but i could be wrong...
     

See more popular forum discussions.

Share This Page