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The De Meirleir Experience

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 28, 2013.

  1. barbc56

    barbc56 Senior Member

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    It's magic.:D
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Not nuts ;) but you spelled his name wrong!

    Sushi
    Firestormm likes this.
  3. Research 1st

    Research 1st

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    So re: KDM. It appears on balance that so far people are having positive experiences with him. I would say that as long as people understand that when seeing any doctor for ME CFS there is little they can do to radically make people better (unless they have an undiagnosed infection), then most people won't be disappointed, no matter which doctor they see.

    As someone with no money left from spending it all on treatments that never worked in the past, I can appreciate it is frustrating and sometimes very disheartening to pin your hopes on something you expect you will find useful, and it doesn't quite turn out that way. This is part of the pit falls of going on a private mission to try and discover the many avenues of if, why, how, when, maybe about ME CFS. In medicine there are literally limitless avenues to walk and certainly if you read CFS research, literally hundreds of abnormalities to test yourself for. If we tested for everything not only would we be broke, but we'd have no blood left.....well, even less than usual. :cool:

    Certainly in Europe and the UK, seeing KDM seems to be the only viable option at the moment which is difficult for those severely affected or for those who don't have the actual physical support of getting on a train which must take quite a bit of cognitive skill to make sure you travel to the right country when you have ME CFS and don't end up in a Ski chalet in the French Alps on a TGV. :lol:

    I'm a fan of KDM I guess, any researcher with new ideas too. I like research as it gives the possibility of trying to join the dots on a seemingly impossible to solve puzzle, our illness. In the UK and also if you ask others, Australia especially, there are few to no laboratories that offer specialist tests.

    KDM must be seeing so many people, poor guy. I wish there was a UK clone of KDM but alas Dr Kerr the gene specialist couldn't be accessed privately and has now left London entirely it seems? So KDM it is. Not to be confused with KLM - a Dutch airline company.

    From what I can see it seems GC-Maf is the main treatment of choice at the moment, as well as treating infections.
    I've always been skeptical, because all the infections I test for are negative. Now I hear though that maybe it's not just EBV, CMV and Herpes class infections but tick borne/bacterial infections that ME CFS can be harbouring also. (Borrelia, Brucella, Ricketssia).

    Does anyone find this in their experience to be a rare finding in themselves when KDM tests you for these? I'm biased as I've never had the tests so I naturally cannot imagine myself to be infected with pathogens I have no idea about. Maybe we're often infected with these more rare infections and simply don't know. Which would make sense if we don't look for them int he doctor's office and stick to viruses only.
    Clodomir, Valentijn and merylg like this.
  4. snowathlete

    snowathlete

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    Thanks SOS. Very nice of you to say and I'm glad you think so.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm not sure what you are asking? Whether many patients have been found to have things like Borrelia, Bartonella, Brucella, etc., when they didn't expect it?

    Sushi
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    And I thought I would stay out of this thread !

    R.E.D ownership – currency of details.

    It is true that Brand IVI does not meet the test of Wikipedia approved sources – and in any event the article Profit and Loss was written as discussive and not as a definitive statement of de Meirleir or any other persons business interests. However the quoted sources were (as of last year) reasonably up to date. The Belgian Government does not make corporation data freely available or easily accessible and the Coface site is the only ready source on Belgian businesses. Coface presentation is copywrite so anyone who wants to check the data will have to purchase it themselves – the following was as published by Coface Services as of April 2012.

    From the official "Moniteur Belge” and unamended (on the Coface database) since 30/10/2008
    The partners in R.E.D. LABORATORIES were :

    Catherine Suzanne Armande Bisbal
    Pascale Josse Florence de Becker
    Isabelle Willie Luce Campine
    Ramamurthy Charubala
    Charles Vincent Taylor Herst
    Bernard Lebleu
    Kenny de Meileir
    Daniel Peterson
    Wolfgang Pfleiderer
    Nancy L Reichenbach
    Tamim Salezada
    Robert J. Suhadolnik
    DEXIA VENTURES

    Identified Shareholders are listed as BIORED, owning 51.77% shares as of balance sheet dated 31/12/2009 . The Coface data shows R.E.D. LABORATORIES as having between 5 and 9 staff and its employer competence remaining unchanged since 1998 . In the abbreviated accounts of 31/12/2010 no figures for sales and services are given and net income is given as only E$50,998, however year on year gross value added is given as E$835,387 - clearly R.E.D. LABORATORIES is an active business.

    Subsequent to amendments dated 19/10/2009, two persons are listed as partners in BIORED: Kenny de Meileir and Charles Vincent Taylor Herst (ref: the "Moniteur Belge"). The accounts dated 31/12/2010 show total assets of E$5,007,192.

    I don’t think I can add anything else to the orignal blog article : http://cfsmirror.blogspot.co.uk/2012/05/profit-and-loss.html My own position is that prescribing doctors need to be wholly transparent when placing substantial costs upon patients, especially so where testing and treatments confer financial benefit on the doctor, over and beyond the active involvement of the doctor (of course surgeons charge for their surgery). Effectiveness, necessity of test or treatment, and also simple value for money are all considerations that become more significant where the physician is in a position to directly benefit from choices made, or lack of choices offered. I don't doubt thre are many areas of medical bad practice - but none of that should excuse lack of transparency for M.E/CFS patients when consulting medical professionals.

    IVI
    Firestormm likes this.
  7. Valentijn

    Valentijn Activity Level: 3

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    So how do you explain that Dexia Ventures, an entity that ceased to exist 2002, was still listed as a partner in 2008? Their inclusion makes all information from your source highly dubious, at least with regards to how current it is.
  8. Research 1st

    Research 1st

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    Hello Sushi, yes. I am not informed at all about these class of infections and wondered if people who did test positive in Europe were surprised and did they think this quite unusual, e.g did they think they'd be immune to them because of their label of ME CFS and that they were outside the US.

    I've never met anyone in Europe myself with ME CFS who says the discovered Borellia,Barteonella etc etc but at the same time I would imagine few people get offered these tests by physicians who believe them to be associated with something like Lyme disease rather than ME CFS? This is what I'm lead to believe when I've asked in the past in the UK for these tests, that Lyme and other bugs are an American problem and not a European one.

    I saw you can get these tested at redlabs, PCR as well as serology. Do you think it's probably best to go for PCR first? There seems to be a problem with selecting serology (antibodies) before PCR first because if negative we might wrong assume we aren't infected. Ideally it would be nice if all of these infections could be cultured, but I imagine even if so these aren't available to the public because the demand would be low.
    GcMAF Australia likes this.
  9. Jenny

    Jenny Senior Member

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    Several private doctors in the UK test for these infections, using a range of different tests. I know lots of people who have tested positive, myself included, but long term abx treatment (including IV) seldom helps. Many of the tests used are pretty dodgy.

    There are lots of threads on here relating to Lyme etc, by the way.
  10. Research 1st

    Research 1st

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    Thank you Jenny. It goes to show how personal negative experiences can create false impressions. I thought the UK didn't accept long term Lyme disease treatment, because this is what a doctor told me and said Chronic Lyme didn't exist! So it's good to hear some people can get help after all. :thumbsup:
  11. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don't know how DEXIA arranges its operations, but just because it changed how it dealt with venture capital doesn't mean that its investments were all disposed of. It's quite likely that Dexia Ventures continues as a holding company for investments made under the DV name. The 2002 article doesn't say 'ceased to exist' it says 'shuts down' - i.e not process venture capital funds - all share holdings would still remain unless sold and there's nothing to suggest that DEXIA intended rapid disposal of the assets.

    IVI
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    I am in the US even though I travel to Brussels to see KDM. Igneex tests show a likelihood of Borrelia but I will have this rechecked by PCR, genetic sequencing and probably also the LLT test from Infectolabs in Germany.

    However, I do know a lot of ME patients in Europe who had not been previously tested for Borrelia, Bartonella, and most of the other "odd" infections and almost all of them are showing positive for at least one by PCR and genetic sequencing--the most for Borrelia or an unusual form of Bartonella. This doesn't mean that they don't have ME, but it does cast a different light on the whole illness cycle.

    Redlabs does some of these tests but KDM also sends samples to other labs according to the patient's history and symptoms. So it isn't exactly "one-stop shopping!" I think he tests serology at the same time as PCR. He does want to confirm an infections by culturing and genetic sequencing before treating it though.

    Best,
    Sushi
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  13. GcMAF Australia

    GcMAF Australia Senior Member

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    Research 1st
    46 people presenting with CFS at CFSDiscovery clinic in Melbourne now been diagnosed with Lyme! Don Lewis has started using MAF314.
    1 person diagnosed with Sarcoidosis 2 weeks ago found that she has Lyme. Of course no one knows what comes first, and Lyme maybe just one factor in CFS. Some people think that exact diagnosis may not neccessarily be critical to getting the correct treatment. I hope to explain in due course.

    330 people recently diagnosed with Lyme in Australia. This is the tip of the iceberg and I imagine the number diagnosed is growing daily. There is a lot of activity by Lyme people in Australia. Something like 400 members on Lyme face book support groups. There is a tick disease conference in March, I am presenting a short talk on GcMAF and inflammation therapy there. Also a world wide Lyme Protest in March.
    GcMAF.eu has about 40 people with Lyme on GcMAF. It is not easy to treat and people may need to use antibiotics and benicar.
    Valentijn, merylg and justy like this.
  14. GcMAF Australia

    GcMAF Australia Senior Member

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    Re Lyme see this site
    http://www.karlmcmanusfoundation.org.au/
    and..
    Borrelia is referred to as a great imitator. The clinical symptoms imitate many chronic diseases including motor neurone disease, multiple sclerosis, Parkinson’s disease, Alzheimer’s, fibromyalgia and chronic fatigue syndrome.

    These chronic diseases are on the rise for reasons unknown. The Nobel Prize winner Luc Montagnier has stated “chronic diseases = chronic infections” as an increasing number of scientific papers are indicating.

    Borreliosis has a myriad of symptoms. These symptoms can start a week after a tick bite or much later, and include sinusitis, stiff neck, sweat attacks, muscle twitches, muscle weakness, involuntary jerking of limbs, arthritis, Bell’s palsy, cramps, paralysis, depression, brain fog, insomnia, balance problems, light sensitivity, noise sensitivity, optic neuritis, nerve conduction defects, numbness, ECG (cardiac conduction) abnormalities, swallowing difficulties, tinnitus and more.
    http://www.karlmcmanusfoundation.org.au/lyme-information/diagnosis-a-treatment
    merylg likes this.
  15. Firestormm

    Firestormm Senior Member

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    What is the active ingredient in GcMAF that is of relevance to fighting Lyme Disease and ME? Presumably it is something to do with the immune system - a booster perhaps? Thanks.

    I have yet to properly consider this wonder drug whose reach was also sold once as a cure for cancer and HIV I understand. Though Cancer UK had this to say about it and the research behind it in 2008.

    I would like to know more particularly if now it is extending it's support significantly in Australia and will take more of a research interest but not on this thread I think. I want to try and understand De Meirleir's tests and methods first.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    GcMAF is not really a drug. The healthy body makes GcMAF which activates macrophages in the Th 1 immune system. An enzyme named nagalase is generated by some disease processes and this blocks the formation of GcMAF. Nagalase is often high in ME patients. So we inject GcMAF to bypass this roadblock.

    A high level of nagalase usually indicates that the body is compromised in making GcMAF. Nagalase levels typically go down during therapy with GcMAF. This is why it has shown to be effective in a variety of diseases -- it restores an essential part of immune function.

    That is the short story!

    Sushi
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  17. barbc56

    barbc56 Senior Member

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    Firestormm. I believe there are several threads about GcMaf and Lyme here on the forum. I have a lot of material on both which I would be glad to share.
    As far as the GcMaf if it's too good to be true, it probably is. There are many types of cancers, probably not sharing the same etiology, so a 100 cure is highly unlikely.
    Barb
  18. GcMAF Australia

    GcMAF Australia Senior Member

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    Certainly the proof is in the pudding.
    There are emerging concepts regarding the onset of cancer. This may certainly allow improved treatment success.
    Since the genetics of VDBP/GcMAF is relevant to the cancer rates as shown by SNP's then this indicates a role of VDBP in cancer. There are heaps of tests indicating that GcMAF can be useful in cancer treatment.
  19. GcMAF Australia

    GcMAF Australia Senior Member

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    The Cancer UK blog "This blog is co-written by three of Cancer Research UK’s professional science communicators, Henry Scowcroft, Kat Arney and Oliver Childs."
    I dont know who or what Cancer UK is, nor do I know if these people are scientists or communicators.
    Their blog apparantly is not 100% accurate apparantly, and is 5 years old and much has developed since then.
    As i say the proof is in the pudding.
  20. beaverfury

    beaverfury beaverfury

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    'Australian Biologics' testing services do PCR testing for borrelia whole blood/urine/serum, as well as mycoplasmas and chlamydia.

    My doctor in Perth,WA uses- 'Infectolab' (great name), in Germany, also for borrelia, erlichia, babesia, bartonella, ricketssiae,etc, and a host of immune tests , CD3,CD57, CD4, CD8 and so on.

    Just in case anyone in Oz feels like they are living in a backwater, banjo loving, black pit post appocalyptic wasteland of medical nothingness... there's some options for you :thumbsup:

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