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Dr.Meirleir prescribes me Lyme treatment, plus other questions ...?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Bansaw, Sep 5, 2017.

  1. Bansaw

    Bansaw Senior Member

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    I saw Dr. Meriler in June, and he's just got a protocol back to me.
    He wants to see me in 3 months, but I'd prefer a phone/ Skype consult. I'm going to have to clarify his protocol because I've a few questions about it. I'll speak to him direct, but also wanted other peoples thoughts about their experience.
    Few initial questions:
    • Has anyone else taken this Samento/Banderol/Cumanda protocol
    • They included a price sheet from a shop called Kalida in Europe. Prices look pretty good. Anyone able to beat those prices with an outlet in the U.S.
    • Did you guys get a similar protocol, and did you start with the gut-fixing treatment first before the Lyme treatment?
    • Two liters of water per day !?
    [​IMG]

    Lyme treatment:
    [​IMG]
     
  2. msf

    msf Senior Member

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    Sorry, KDM didn´t diagnose me with Lyme, so I can´t help much. 2L of water is not all that much.

    I am curious to see how this thread goes if it degenerates into the usual pro/anti-KDM slanging match, as one of the moderators seems to currently be out of commission. Hopefully people will note that the poster was not asking their opinion as to whether chronic Lyme exists,or whether antibiotics have side effects, and moderate their responses accordingly.
     
  3. Valentijn

    Valentijn WE ARE KINA

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    I'd skip this and stick with the real antibiotics. There is no proof of efficacy of herbal antibiotics against Lyme in human beings, only in petri dishes where practically everything is effective.
     
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  4. snowathlete

    snowathlete

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    Perhaps you're thinking of me when you made that antibiotics comment @msf, but I am not pro or anti-KDM, I used to be pro-KDM (there is an article on Phoenix about my initial experience when I went to see him which was positive) but I am more neutral now following the bad experience I had, because I acknowledging that my experience is not the only one. I just offer my opinion in a balanced way as I think most people do on the forum. I'll continue to tell people of my experience with abx even if not asked for it because people don't necessarily know to ask. It's up to them if they put any stock in it or not. I haven't seen much need for moderators to get involved in discussions on KDM's treatments over the years, even though people sometimes have different views, but maybe I haven't been involved in all the discussions.

    To answer one of the OP's original questions, I bought from Kalida a few years back, delivery was good, and some of their stuff was better priced and others were more expensive. I found that sometimes they would sell products that were a mixture of different things, which while convenient you paid a premium for and it was cheaper to buy the individual ingredients elsewhere. In the US you might be able to get it compounded for you at a lower price.

    When I had treatment I didn't have gut issues at the start so I went straight into Lyme (and Bartonella) treatment, so I can't comment on the gut treatments you've been prescribed.

    Regarding the B12 I see you've been prescribed, in my case I had the same prescription, but perhaps could have taken it less often, as a long time after I gave up treatment my B12 levels were still sky high from taking so much, it always came back as the maximum level the test picks up. I don't think this causes any harm, but you might save some money and have less painful jabs if you take less. 20mg I.M. a week is quite a lot really, in my experience.
     
  5. Valentijn

    Valentijn WE ARE KINA

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    For me it helps with deep (vascular?) pain. If I wait a week between doses, I start to feel it. Nothing to do with a B12 deficiency, just symptom management in my case.
     
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  6. snowathlete

    snowathlete

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    Might be a good idea to start high and see if you get any benefit. For me it did nothing so wasn't worth keep taking.
     
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  7. Marc_NL

    Marc_NL .

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    @Bansaw
    Take care that the Rifaximin 50 mg is probably a typing error and was meant to be 550 mg
    I don't know if 50 mg is even available.
    I would ask the clinic if this is correct.
     
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  8. keenly

    keenly

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    Dr Cheney recommends 30mg of Hydroxycobalamin daily. Blood tests are irrelevant.
     
  9. keenly

    keenly

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  10. A.B.

    A.B. Senior Member

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    Whether chronic lyme exists, whether it can be treated with this or other treatment programs, and whether de Meirleir uses reliable testing is relevant and it's not up to you to exclude critical voices from this discussion

    de Meirleir prescribes unproven treatments, based on dubious lab tests (from a company he co-founded), and has seriously hurt many of his patients in this way. Kalida is yet another de Meirleir company.

    This has to be said because otherwise there is no balance.

    If you speak with his patients, you'll discover that many of them have been taking antibiotics for years and they are convinced they need to take them for a few more years before getting better. That's the kind of path you're going down. If you're lucky and avoid getting another serious illness on top of what you already have due to abusing your body with antibiotics.
     
    Last edited: Sep 5, 2017
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  11. msf

    msf Senior Member

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    Nope, I wasn´t thinking of you at all Snowathlete (you´re so vain!). I always find your posts very reasonable and relevant. I don´t want to discourage anyone who has had a bad experience with the kind of treatment that is outlined above from contributing, I was just trying to avoid the usual antibiotics can be harmful/lyme disease may or may not exist arguments, which to my mind have little to do with the topic of the thread. Of course, some may think that they are helping those who are not aware of these issues, but as I have already mentioned them those folks can take a well-deserved rest this time!
     
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  12. msf

    msf Senior Member

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    Thanks for your contribution!

    I see you are taking advantage of the moderator not being around, good for you! I am referring to the very last thread about KDM, where comments like yours were ultimately removed from the thread because they weren´t relevant, which I had repeatedly pointed out to no avail. I was trying to save everyone´s time in this case, but if you want to go through it all again, go ahead and I will just wait and point the same thing out to the moderator, and your comments will most likely be deleted again.
     
    Last edited: Sep 5, 2017
  13. dadouv47

    dadouv47 Senior Member

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    You are right that there's some conflict of interest between him and his laboratory/kalida shop. I'm pretty sure he wins a good money with it, but from what I have seen from him as a patient for more than a year, he doesn't take advantage of it. I went to see him after 6 months and he didn't ask for any test (because he didn't think it was necessary, even after I asked to see if I didn't have active lyme or co-infections) and he never asked me to buy his product on kalida.

    Saying he prescribes unproven treatments, it depends from what you are talking about. Unproven treatments for ME? Sure. Unproven treatment for leaky gut/SIBO? That's false. Antibiotics and herbals protocols that he prescribes are proven to be effective for leaky gut/SIBO (it doesn't always work but they are not ''unproven treatment''). For Lyme is also false : what he prescribes for active Lyme is very standard and that's what is given by most Lyme specialists.

    PS : I'm being treated for inactive Lyme and I'm not sure he's treating me well with this (I had great improvements then relapsed), but it's pretty unfair to claim he provides unproven treatments for Leaky gut/SIBO and active Lyme. If they are not efective enough (and unproven) for people with ME, that's another discussion.
     
    Last edited: Sep 5, 2017
  14. Bansaw

    Bansaw Senior Member

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    Thanks so far everyone.
    I think if Dr. Meirleir was in it to get rich, he'd be charging a lot more than 90 Euros for consultation. I saw a Dr. here in the US and he charged me $1000. Meirleir also offered me a pulmonary test for about $100, which is significantly less than the $6,000 I was quoted here in the US. I sense he could be a lot richer if he really wanted to be.
    I also tried a 8-month very heavy abx regime for Lyme (actually its cousin, Rickettsia Mooseri) in 2011, and that was very strong combinations which did very little for me. I am very open to trying the Samento protocol suggested here.
     
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  15. dadouv47

    dadouv47 Senior Member

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    I don't know your blood tests results but I find hard to believe that the samento/banderol/cumanda will cure you if u didn't get better with specific antibiotics for Lyme. I'm doing this protocol for more than a year and I don't believe the herbal protocol helped that much, probably a little bit since I felt some herx symptoms when I was started it and increased the doses.
    KDM told me he prescribed me the herbs mainly to maintain Lyme inactive, not to get rid of it.

    Still, if u have leaky gut and/or SIBO, his treatment may help you in a big way. WIsh you the best of luck :)
     
    Last edited: Sep 5, 2017
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  16. msf

    msf Senior Member

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    What annoys me/baffles me most is the presumption of it, as if some of KDM´s patients weren´t aware that some of his treatments/diagnoses are controversial. Oh great, someone less qualified than my GP telling me the exact same thing, with the exact same lack of granularity and of any serious analysis - whatever would I have done without you?
     
  17. snowathlete

    snowathlete

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    Are they irrelevant though? What science is that based on? I don't know, but for me it didn't do anything other than keep my B12 off the charts for months, perhaps years after. Sounds like for others it might really help though.
     
  18. keenly

    keenly

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    B12 is not found in high concentrations in the blood. Blood work is not an accurate way to measure B12.

    Your high levels could mean a Thiamine deficiency. It does not mean you have too much B12 in your system. Likely the opposite. You are not getting it to the cells.

    Research Dr Lonsdale and Thiamine. Look at every article.

    https://www.hormonesmatter.com/author/derrick-lonsdale/
     
  19. keenly

    keenly

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    KDM is not a money grabber like some. His charges are VERY LOW.

    Some doctors charge $14 a MINUTE. Well not some, one. PC.
     
  20. snowathlete

    snowathlete

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    That does contradict my own experience though, because before I had B12 injections my B12 was at a normal level in my blood. Then I had the injections and it immediately went high when measured in blood, then higher when tested again after more injections, then I stopped taking them and it remained high for the year or more after I stopped taking it but had it tested.

    That correlation with the injections makes it likely to be due to the injections, and I don't have symptoms to suggest thiamine deficiency so it's unlikely to be that. I don't know what else might cause high B12 but it may no longer be high as I haven't tested it for well over a year.
     
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