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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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App with KDM

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by harrycat, Oct 17, 2011.

  1. aquariusgirl

    aquariusgirl Senior Member

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    Interesting about the bacteroides....that is one of my problems.

    I too did a bunch of pathogen testing thru KDM. It all came back negative, even tho I am EBV+ by IGM ..antibody tests in the US, so I suspect those tests are worthless, a waste of $$ & I would not repeat them.

    I do feel like I am making progress on nexavir, b12 and gcmaf, but it's very early days. Lots of ups and downs. Jury is still out.

    I am kinda skeptical about his gut program too.....It just seems like there is so much we don't know about the gut & we know that 3 courses of abx can irrversibly change the gut biome...so that kinda worries me.

    I thought the food allergy testing was useful even the fructose stuff. Turns out I am ok with fructose. But I suspect that even if you can tolerate wheat, carbs are a no-no..because of lactate.

    I'm not helping much am I? But I can tell you I have high hopes for the GcMaf. Time will tell.
  2. Helene

    Helene

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    The issue of antibiotic use is something to consider. However, I noted that even Dr. Myhill says that if there is strep in the gut, an antibiotic is warranted.

    In fact, it was 4 months of antibiotic use that preceded my collapse into the CFIDS world.

    I would dearly love to hear how others responded to the gut treatments as addressed by Dr. K de M., or any other physician. I understand that Dr. Chia focuses on the gut too.

    Thanks and best wishes. Helene
  3. Athene

    Athene Never give up

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    Hi cansado,

    I'm really interested to hear this! Would you mind telling us what kind of treatment he gave/gives you? Or what you know about the therpies he's using on other patients?
    The ones I compared notes with found he was using totally different treatments on us. A group of us used to email each other all our results and treatment plans and found that though some of us had very similar test results he used different therapies on us. We could never figure out what the rationale was.

    The treatment I am on now is a massive cocktail of 4 antibiotics, an antimalarial and an antifungal. These are all aimed at eliminating my Lyme disease, babesiosis, erlichia, chlamydia pneumonia and mycoplasma. I've been taking these non-stop for a year. I also take very high doses of probiotics - I've tried all sorts but the best results come from regularly changing them and mixing brands together, rather than sticking relentlessly to the same stuff. My test of whether things are OK is if I have no diarrhoea and not too much farting. My guts are working better now than they have done for 28 years.
    So it's true, antibiotics can change your gut flora permanently ( I am certain that happened to me after 6 months on antibiotics when I had myocarditis as a teenager) but this time around, starting from guts in a terrible state, the change has been an improvement. (I have read that if your immune system cannot get the balance of intestinal flor back to normal after 6 months, then it is never going to. I gave it 26 years to try its best, I don't think it deserved any more chances!)
    Although I have chronic viruses that also give me problems, I am focusing on the bacteria because they seem to be the bigger problem, and when I get them under control my immune system seems better able to have a go at the viruses. I take 3000mg Lysine a day which keeps my herpes almost completely under control and makes a noticeable contribution to lowering my epstein barr activity as well. (Doesn't work as well as it does on the herpes, but I reckon I'm taking enough drugs already, and my last experience with an antiviral was very discouraging).
    I am also on a pretty huge amount of nutritional supplements. I take the whole lot of adrenal support supplements because my cortisol level was 4 (extremely low), and I take a reduced Richvank simplified methylation protocol supplements. I also take alpha lipoic acid which makes a huge difference to my general inflammation (and hence headaches etc).
  4. Tony

    Tony Still working on it all..

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    Hi Helene,

    I'm a very satisfied KDM patient of almost 2 years now. The antibiotic/probiotic protocol helped my gut greatly. The nexavir took about 6-8 months to be noticed and it has also been very helpful as has the B12 injections which I was already on. I've not yet taken GcMAF.

    I've posted my story as it unfolded over the course of time detailing my version of the illness, physical capacity, gut bacterial status etc here: http://forums.phoenixrising.me/showthread.php?241-My-Prof-De-Meirleir-patient-experience...

    I'm now more able and feel much more well thanks to KDM and my doc here. I go out much more often, even at night which used to be a rarity. I can plan my life and know I'll be able to go to whatever social activity it is. (Within reason of course, I'm not partaking in any fun runs!). I read more books! Most importantly I feel mostly almost normal in the gut and that horrible poisoned body feeling is largely gone. That last point alone has been worth the cost and time invested.

    I'm nowhere near recovered but I am happy with what I've gotten out of it all.

    Cheers...:)
  5. Athene

    Athene Never give up

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    Hi Tony,

    I'm really happy to hear about these improvements you've made! That's such great news!!! :))))))

    That "horrible poisoned body feeling" is just about the worst thing, isn't it? For me, I'm pretty sure the B12 injections are the biggest help with that. But i still get that sometimes so I am not all the way there yet.

    All the best to you!
    Athene
  6. Tony

    Tony Still working on it all..

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    Hi Athene,

    Thanks...:) Sometimes I can hardly keep the smile off my face these days when I think of how much better I feel this year! I wish everyone could get at least this much improvement.

    Cheers to ya...:)
  7. klimt

    klimt

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    Hi everybody,

    Thank you all for this thread. It has been very helpful. I am due to see KDM at the end of this month, I was wondering if anyone had some advice on hotel arrangements?

    I have looked at the Eurostar, but as I am travelling with family they would like to stay somewhere in the city center if possible. Does anyone know which district would be best suited to stay in? ie. that has train from airport and close to taxi etc. for making my appointments in the morning?

    Thank you for your help,


    best
  8. taniaaust1

    taniaaust1 Senior Member

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    I dont think its a bad thing that he gets into the latest CFS buzz treatments, he's what Id call a forerunner and prepared to trial things. (Much better then waiting for years to have something proven!!, his patients will be one of the firsts to be actually getting treatment due to his willingness to jump on the bandwagon with the latest research and trial things).


    I dont know how aware you are but he actually goes to other countries (eg he comes regularly to Australia every few years) and talks to patients and doctors there and shares anything he's learning on ME/CFS from his own patient group. So yes guinea pigs in a way but this is also good as who knows, he may be the one who may end up discovering what works the best.
  9. Athene

    Athene Never give up

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    I take your point Tania, but the problem is he made me pay over twelve thousand euros to be used as a guinea pig WITHOUT BEING TOLD. He didn't discuss different treatment options with me.... he just posts you a list of drugs to buy and take after you have gone back home.

    And I very aware of all his travelling. That is always the excuse you get on the phone when he's not available to help you!!!!
    When one of his experimental treatments was making me severely ill and paralysed he was never available to give advice to my GP or the doctors in hospital trying to clear up his mess.
    When his experiments went wrong with me he completely lost interest in me as a patient.
  10. Clodomir

    Clodomir In hibernation mood

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    Hi Klimt,

    I am living in Brussel. Brussel is a small city.
    If you come with Eurostar, you arrive at midi station (gare du midi). 2 options: Take a taxi or the metro.
    If your family want to stay in the center, I suggest you to find something near Louise (lots of boutique, nearby lots of things to see and served by metro of trams and more quiet than the touristic center). From "Gare du midi" to Louise: 3 stations
    To go to Dr KDM, take a taxi (price from Louise (one way): 50 euros not more). The taxi company I take is "Taxi bleus". You can find the phone number on internet. You can always ask how much it would cost (They give you an approximative price). Lots of taxi drivers do not know where is Himmunitas. They know better the "Hopital militaire" who is nearby.
    You can also take the bus but, it is not easy for a "normal" people, for us it is a nightmare (depends on your condition).

    Voil :D

    My english isn't so good, but I do my best.
    For more information, send me a private message

    Clodomir
  11. ukme

    ukme Senior Member

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    hi Klimt , traffic is pretty bad in the mornings and if you need to be there early you would probably do better staying at a hotel near the clinic to be honest.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have taken the bus and there is one that goes from the city center directly to Himmunitas. As Clodomir said, the bus driver would probably not know where Himmunitas is but they would know the Hospital Militaire, which is the same bus stop. It takes about a half an hour during off peak hours. I think you may have changed your plans, but if you want to know the number of this bus, I have it written down somewhere and can check for you. It costs 2 euros.

    Best,
    Sushi
  13. Clodomir

    Clodomir In hibernation mood

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    Hi klimt,

    As Sushi said, there is a bus: 47 direction vilvorde station
    Here the link http://www.stib.be/horaires-dienstregeling2.html?l=en&moduscode=B&linecode=47
    The stop is hoogveld, it is the nearest form himmunitas.
    Don't be afraid, but Himmunitas is in the middle of nowhere. They are building a lot of appartment there, so it is a Yard.
    It is right that it takes time to go there, but finding an hotel nearby????? Going to be boring for your family.
    Maybe you can find an hotel in the brouckere. So you are on the busline.
    I don't know how is your condition, but my sister, who is also ill, can't take the bus.
    What I do somethimes, during the summer is going by taxi and than came back with the bus.
    During the day, not rush hours, there is a bus every 20 minutes.

    Best

    Thanks Sushi and Ukme

    Clodomir
  14. Athene

    Athene Never give up

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    I used to stay in the Citadines Aparthotels. The price is reasonable and they are bang in the centre of town. The rooms are not that big but you get a small kitchen which is great if you have food allergies and need to cook your own food.
    http://www.citadines.com/belgium/brussels/sainte_catherine.html

    The bus stop is near here (bus no 47 if I remember rightly) and it stops opposite the clinic. If you need a taxi, it costs about 20 Euros.

    Clodomir is right that you would not want to stay near the Himmunitas clinic. You would be in the centre of acres and acres of muddy fields of cabbages!
  15. ukme

    ukme Senior Member

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    I quite liked it plenty of planes taking off overhead! We had a nice hotel but i know what you mean about the cabbage fields!
  16. Mog

    Mog

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    I don't know, I think the cabbage fields sound nice... :D

    Continuing the tourist information theme, is there any public transport from the EuroVolley Center Hotel, which is near Himmunitas, into the centre of Brussels? And can anyone give details, please.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, bus # 47 which stops very close to Himmunitas. We discovered that it does not run after about 5 p.m. though. This bus stops very close to both Himmunitas and the Eurovolley.

    Sushi
  18. Clodomir

    Clodomir In hibernation mood

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    You can find the timetable on www.stib.be (there is an english version). To be sure, you can always make a simulation. The stop nearby Himmunitas is "HOOGVELD".

    You have to take the "De Brouckre" Direction and stay until the end.

    At "De Brouckre", you are in the center of Brussel. If you never being in Brussel, you have to visit the "Grand place". Now, they just put the Christmas tree. There is lots of good restaurants, chocolate shops, cafs, etc... All things, I can't eat anymore... Don't forget to make a little visit to Manneken Pis and don't be disappointed, he is very small.

    Here a link to a plan of the center. http://www.ilotsacre.be/site/fr/default_fr.htm

    Have a "good" trip. Hope everything is going to be alright for you.

    If you want to know what to visit, you can ask me.

    :D

    Clodomir
  19. Mog

    Mog

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    All good to know, thank you. Clodomir, you should get commission from Brussels Tourist Information ;)
  20. ukme

    ukme Senior Member

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    Theres a train station near said cabbage fields, that's how we got into Brussels centre

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