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.

Opinions on de Meirlier

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by neweimear, Sep 15, 2017.

  1. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,312
    Likes:
    12,097
    U.K
    there is a great Facebook group for lyme patients in UK - LDUK facebook group, A lot of people getting various treatments there and discussing them. ALso they have a file of patient reports on Lyme Drs, herbalists etc.
     
    Mel9 and Binkie4 like this.
  2. adelheid55

    adelheid55 Senior Member

    Messages:
    410
    Likes:
    619
    In Germany I would recommand Dr. Klemann in Pforzheim for Lyme. He treats patients from Sweden, Norway, Croatia, UK... And interestingly he treats similarly to KDM.
    He is an ILADS member.
     
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,577
    Likes:
    24,725
    USA
    @Binkie4 Were you diagnosed with Lyme? I didn't realize that and sorry for my confusion.
     
    MEMum likes this.
  4. Banana94

    Banana94 Senior Member

    Messages:
    120
    Likes:
    63
    Switzerland
    Thats no true. He didnt diagnosed me with an infection..
     
    adelheid55 likes this.
  5. adelheid55

    adelheid55 Senior Member

    Messages:
    410
    Likes:
    619
    These unreliable test... which ones do you refer to? There are normal blood tests like thyroid ones,then tests every Gp would do, some test are sent to the University of Brussels lab.
    OK, there are tests done by a private company but again... which ones are "bogus"?
    I have said this some times before, nobody is forced to see KDM, but I don't like this KDM bashing. Other doctors aren't treated like that...He is no saint but he has the broadest of ME/cfs in Europe. I wouldn't know where to go.
     
    justy and Banana94 like this.
  6. Banana94

    Banana94 Senior Member

    Messages:
    120
    Likes:
    63
    Switzerland
    Lyme disease doesnt exist at any University hospital in Switzerland. You have an active infection or not. If you dont have one you will be sent to the psychiatrics. Is that what ME/CFS want? I guess not. Youre talking very respectless about KDM..
    Do you have better treatments? If yes, Im your new patient!
     
    Last edited: Dec 6, 2017
  7. Thinktank

    Thinktank Senior Member

    Messages:
    1,267
    Likes:
    1,434
    Europe + Asia
    You probably would have 3 to 4 years ago and then put on longterm antibiotics. Now less people are diagnosed with lyme because he finally understands the LTT / Elispot is an unreliable test.
     
  8. Banana94

    Banana94 Senior Member

    Messages:
    120
    Likes:
    63
    Switzerland
    Thats possible. Just want to make sure that NOWADAYS he doesnt diagnose everyone with infections
     
    adelheid55 likes this.
  9. Thinktank

    Thinktank Senior Member

    Messages:
    1,267
    Likes:
    1,434
    Europe + Asia
    So you might understand why some people are critical about KDM. He was wrong to misdiagnose so many with lyme disease then, and there's no proof at all that an overgrowth of bacteroides for example is causing disease. I find the use of these antibiotics for gut treatment irresponsible and dangerous. Antibiotics should be reserved for infections (or proven SIBO) only, period.
     
  10. Banana94

    Banana94 Senior Member

    Messages:
    120
    Likes:
    63
    Switzerland
    I absolutely understand your point of view. But if he really has success in some cases treating gut dysbiosis with ABX than there maybe really is an indication. I also have gut problem an tried all kinds of diet. And none of them cures my problem or makes it acceptable to live with it. Doctors use to prescribe ABX also for simple infections which are not proven to be triggered by a bacterium. I know long term ABX is another case.. If you are aware of the risks and side effects why not trying it? You can always stop them.
    For systemic infections I would suggest to give the ABX I.V. that the gut is more or less protected from damage.
    I don't have anything to lose with my gut function. Worst case I will get UC
     
    Last edited: Dec 7, 2017
    adelheid55 and Mel9 like this.
  11. Thinktank

    Thinktank Senior Member

    Messages:
    1,267
    Likes:
    1,434
    Europe + Asia
    I have not seen many patients having succes with abx as gut treatment.
    The overprescription of abx by incompetent doctors for minor or non-complicated infections really is a problem indeed, like ciprofloxacin - a nuclear bomb for a non-complicated UTI.

    My case against long term abx for the gut is that we do not really know anything about the delicate and symbiotic relationships of the bacteria, vira and fungi. We don't know what's going to happen if we just treat the bacterial part of it, it just messes up the whole gut because abx is always broad-spectrum, it does not discriminate.
    It's all extremely complicated and without more research i think patients following the treatment are just guinea pigs, misinformed guinea pigs.
    Then there's the problem with growing antibiotic resistance, it's becoming a huge problem. What if you end up with a simple infection but you developed antibiotic resistance?

    About UC, i do know one patient who developed UC from abx treatment with KDM. I myself have Crohn's disease and it got worse with 3 years of IV and oral antibiotic for misdiagnosed lyme disease.
    You really don't want inflammatory bowel disease on top of you current condition, believe me.
     
    aquariusgirl, Learner1 and justy like this.
  12. Banana94

    Banana94 Senior Member

    Messages:
    120
    Likes:
    63
    Switzerland
    Its always the same standard discussion. People who got cured by KDM dont hang around in the forum anymore. So you‘ll find here more KDM patient which not got better.
    I absolutely confirm that we dont no enough about the symbiotic relatinship of the microbiota in the gut. It‘s one patient here who gut UC, its a bad story, very bad story but its not everybody who gets UC.
    Not all ABX are broad spectrum. But they can mess up the flora.
    KDM always changes the ABX because of the possiblity developing resistance. I dont care about general resistance to ABX if there is a possibility to get cured than I will take the ABX.
    PWC‘s are always guniea pigs, there is no proven treatment. I can also stay at home doing nothing and hope that I recover from doing nothing, what actually doesnt work.
    My GP always checks the ABX he prescribes and checks me for side effects and would also tell me if I should stop it.

    In your profile page you says that IV ABX as the most helpful treatment
     
    Last edited: Dec 7, 2017
    Learner1, adelheid55 and Mel9 like this.
  13. adelheid55

    adelheid55 Senior Member

    Messages:
    410
    Likes:
    619
    @Banana94 and @Thinktank
    I think the same. How long are you going to wait until there will be found a cure for ME/CFS? How can it be found if there aren't Guinea pigs;)
    I don't get a treatment around here for me but have to say that another PR member recommended a Dr. in Germany (I would never have found him myself) who treats Lyme patients from all over Europe. He is treating our daughter with IV antibiotics like KDM . But he is no specialist for ME/CFS. So we are glad we have KDM as well.
    Certainly there is a risk but like banana94... if there is a possibility to get cured with ABX I will take it.

    Thinktank, I know your history and it makes me sad...
     
    Banana94 and justy like this.
  14. Thinktank

    Thinktank Senior Member

    Messages:
    1,267
    Likes:
    1,434
    Europe + Asia
    I don't believe that all those people who got "cured" have not 1 lingering symptom and completely vanish from all forums and social media. If i were cured I would cerainly check in now and then to help and i believe so would many others.
    There sure are people who have gotten better with treatment but i do not believe the numbers that have been claimed.

    There are quite a few more patients here who got damaged by treatment, not just me and the UC-person.

    By broad-spectrum i try to say that every antibiotic kills multiple species, a special antibiotic that only targets bacteroides for example does not exist.
    And where is the proof that the bacteroides contribute to your state of disease? Did you know that high bacteroides % is the average medium on ubiome? Tons of healthy people with 50%+ bacteroides.
    Where is the literature that mentions bacteroides should be below 10%?
    Research has shown that diet has a huge impact on the composition of the microflora, percentages can completely reverse within days. One day 50% bacteroides and a few days later 25% depending on what you ate.

    It's in your right to follow KDM's treatment, i just hope it's an informed one having weighed in the risks. I see and have seen many patients who know jack sh* about the medication they are taking, unknown to the risks etc. And that my friend i find dangerous and irresponsible because there is no proof at all that the abx treatment for the gut really works.

    IV ceftriaxone indeed helped me for a few weeks, not because it killed something off but because of its anti-inflammatory effects. It had nothing to do with lyme disease.
     
    Last edited: Dec 7, 2017
    justy likes this.
  15. Thinktank

    Thinktank Senior Member

    Messages:
    1,267
    Likes:
    1,434
    Europe + Asia
    I wish you and your daughter all the best, i really hope you get cured!

    I prefer to wait than to jump into the dark with unproven treatment. But what has been proven is the damage that abx do, especially long-term treatment. Really, look into the latest research and be amazed.

    I'm really opposed to the current way KDM is treating patients.
     
  16. Banana94

    Banana94 Senior Member

    Messages:
    120
    Likes:
    63
    Switzerland
    I understand that you are opposed to his way of treating patients, thats your right.
    Im also aware that long term ABX do damage to the gut, but I also guess that some bugs in my gut do more damage than taking ABX. So I take the risk on me. I can't live with them anymore.
     
    Mel9 likes this.
  17. Banana94

    Banana94 Senior Member

    Messages:
    120
    Likes:
    63
    Switzerland
    @Thinktank are you actually a patient of KDM?
     
  18. Thinktank

    Thinktank Senior Member

    Messages:
    1,267
    Likes:
    1,434
    Europe + Asia
    I stopped seeing him, i don't agree with his treatment anymore.

    I wish you all the best, let's continue the discussion in a year or so.
     
    A.B. likes this.

See more popular forum discussions.

Share This Page