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The De Meirleir Experience

Joel (snowathlete) explains why he decided to consult Dr Kenny De Meirleir and describes his journey to De Meirleir’s clinic in Belgium…

Prof Dr Kenny De Meirleir

Prof Dr Kenny De Meirleir

I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in the summer of 2009 by an ME/CFS clinic run by the National Health Service.  The UK is about as backwards as it gets when it comes to this illness of ours, so I was prescribed Graded Exercise Therapy (GET) by the NHS. It took me a long time to recover from the damage GET did to me, but once I was well enough, I started looking for better doctors and better treatments.

With so little nailed-down about the illness I decided it was important to see a doctor who had a lot of experience; someone who had seen a lot of different patients with the illness.  I also wanted to see someone who would test for a wide range of problems, and prescribe treatment based upon the results.

There are not as many good ME/CFS doctors in the world as there should be, but there are some.  In the UK there are few options.  There are a couple of good doctors, such as Dr Sarah Myhill in Wales and Professor Julia Newton in Newcastle, but these two doctors are quite focused on specific areas, Mitochondria and the Autonomous Nervous System respectively.  I think each of these areas have their merits, but as patients often suffer from multiple issues, it is a good idea to see a doctor who looks at a broad range of problems. 

So, I started looking further afield.  Traveling to the US was not completely out of the question, but it would have been extremely difficult for me to travel that far and certainly more expensive.  In Europe there was De Meirleir’s clinic just north of Brussels and because of the Eurostar train from London to Brussels it was within fairly easy reach.

I contacted patients of his via the internet and heard good things.  Indeed, most of the patients I spoke to had recovered somewhat and those that had not improved did not regret seeing him.  De Meirler has worked on this illness for more than two decades and has seen thousands of patients.  He was one of the authors of the Canadian and International Criteria.  I also read a lot of his research papers, and watched a load of his videos on the net.  I liked what I read, I liked what I saw.

Booking an appointment

Image of the Himmunitas LogoTrying to find details of De Meirleir’s clinic was not as easy as I thought it would be, but in the end a friend was able to point me to the clinic’s website: Himmunitas.

The website was not what I expected.  It is not flashy and it doesn’t contain a great deal of information, but it does show you where the clinic is located and provides contact details.  So my lovely wife contacted the clinic on my behalf and inquired about seeing De Meirleir.  We then went ahead and booked a two day visit to the clinic, Monday and Tuesday, to see De Meirleir and have investigative testing carried out.  I didn’t need to get a referral from my GP.  The waiting time was around two months – better than I expected.  The clinic promptly emailed us some information explaining their standard procedure, and information on pricing.

Getting to the clinic

I quickly applied for a new passport.  I haven’t left the country since I came down with ME/CFS and my old passport photo, taken when I was fifteen, no longer bore any resemblance to the sick looking man I am now (border control might have let me out, but I doubt they would have let me back in again). I then proceeded to book the travel.  It’s worth booking the Eurostar early when the ticket prices are quite reasonable.  The earliest train on the Monday won’t get you to Belgium in time for your 8 am appointment, so you’ll need to travel up the day before.  I then booked the train down to London, from Wiltshire where I live, and waited for the date to arrive.

Snow

In the week leading up to the trip it snowed.  A lot.  I began to wonder if the trip would have to be cancelled and I felt pretty worried about it.  I checked the Eurostar website the day before and about half of the trains were cancelled.  Fortunately, not mine, though there would be speed restrictions in place.

On the day, I caught the train to London’s Paddington station and despite the snow it started running on time.  Then the train stopped.  I looked out of the window and saw open fields.  Something was wrong.  The driver spoke over the intercom and explained that there was a defect on the rails ahead.  My heart sank.  Fortunately the driver decided to risk it, and going very slow he proceeded forward over the defective rails.  You could feel the bumps as the carriage went over them but soon it was behind us, and cautiously, the driver opened up the throttle.  We arrived in London ten minutes late.  I had less than an hour to get to the Eurostar terminal at St Pancras.  A friend from London told me not to bother with the underground but to get a taxi.  Although a little more expensive, you get to sit down and it is a few minutes quicker.  He was right – it was quick and easy.  The ride cost £12.

The Eurostar trains at St Pancras, London

Eurostar (Image curtesy of Arripay)

Eurostar

I made my way to the Eurostar terminal and went through passport control.  It was tiring having to take my coat off and empty my pockets.  I was starting to lag.  I proceeded straight to boarding and had to walk from carriage three to carriage fifteen.  It was a long way.  Next time I will try to book a lower carriage number.

I found my reserved seat which was a table seat.  Mistake.  These seats have the least leg room and it really is significantly more cramped than the non-table seats.  The train left on time and it really was quick under the sea; in no time at all, we came up into French daylight.  We stopped at Lille and a few passengers got off.  The doors shut. We did not move.

The train manager spoke over the intercom, and informed us that there was a fault and a technician had been called, and soon we would be informed if we could continue our journey, or not!  But forty-five minutes later we were back underway.  Phew!

The Eurostar terminates at Brussels Midi, which is the southernmost station in Brussels.  De Meirleir’s clinic is near Vilvoorde to the north of Brussels.  I made it to Vilvoorde and made my way carefully down the snow covered steps and out to the bus stop.  Dark.  Cold.  Tired. 
I scanned the timetable for Zondag (Sunday in Dutch) – no buses running to the hotel.  Luckily everyone in Belgium speaks English and a girl at the bus stop offered to call me a taxi.  After a half hour wait in the snow the taxi showed up and drove me to the hotel.

The Hotel

I stayed at the Euro Volley which is actually a sports centre.  It’s full of young, healthy, giant people with long legs and arms.  I carried my small suitcase up the single flight of stairs and made it to my room.  I checked the time on my phone.  It was about 8 pm and I was supposed to fast from then until Monday afternoon.  No chance, I was starving.  The hotel cafeteria is closed on Sundays and the receptionist recommended a restaurant a five-minute walk away.  I was already tired but I had to eat, so I wrapped up warm and started out. 

The walk took fifteen minutes because of the snow and ice and I felt like an Arctic explorer who had run out of food.  I forced myself to carry on until I reached De Drie Fonteinen (The Three Fountains) Brasserie.  Good service.  Good food.  It was worth it.  I struggled to make it back to the hotel afterward, but somehow I did.  Straight to sleep.

I had booked the same taxi company that had picked me up from the station, to take me to the clinic at 7:30 on Monday morning.  Big mistake.  It didn’t turn up, but the staff at the hotel were helpful and sorted it out for me.  The  best thing about the hotel is that they will drive you to and from the clinic/station for a small charge, you just need to book it with them in advance at the front desk and in hindsight I should have relied on them instead of this other taxi company. I got to the clinic ten minutes late at 8:10 am.

What was the clinic like?

Himmunitas Clinic Interior

Himmunitas Clinic Interior

The clinic was larger than I expected.  It was warm (which was good) and brightly lit with fluorescent lights.  These might be a problem for some people with ME/CFS who are sensitive to bright lights, but fortunately I don’t have that problem.  The receptionist was friendly and welcoming.  She handed me a two page questionnaire to fill in and directed me to a room where a nurse would start my lactose breath test.

The nurse welcomed me, explained the breath test and took the first reading.  I then went to sit down and wait to see the man himself.  Five minutes later I am called in.  I shake his hand and sit down opposite his desk.  I hand him a two page summary that I put together, highlighting my medical history, exposures, key problems.  He reads it and asks a few questions:  Do you smoke? No.  Do you get pain in your jaw? Yes (and it clicks).  Have you been bitten by a tick?  Not that I know, but it’s certainly possible.  Several more questions are asked and I can see he is listening carefully – he is thinking, diagnosing, predicting, deciding.

I ask a few questions of my own.  He gives me straight answers.  Soon, the appointment is over.

Now, this is not a consultation in the sense that most are used to, it is really about giving De Meirleir information so that he can start thinking about your case, decide what tests to run and so on.  It is short, but I honestly don’t think there would be any point in it being any longer.

What is De Meirleir Like?

Now, let me tell you a bit about De Meirleir:  he is not warm.  Now don’t go jumping to conclusions.  He is not cold; that’s not what I am saying.  I believe he cares deeply about his patients, and I think people misunderstand why De Meirleir comes across as he does.  He is professional and efficient and his manner is what it is in order that he can do his job properly.

Over the two days that I was in his clinic there were about twenty patients in the building and I wasn’t even there all day.  We make a sorry looking bunch: sick, tired, desperate.  Only about two people looked less ill than me and one patient spent the whole time in bed in the room next door on a drip. 

De Meirleir doesn’t stop all day, he goes from one patient to the next, each patient walking in with this illness and their emotional baggage in hand, and we all want the same thing – we want him to make us better.  But actually, secretly, we all want something else as well – we want him to listen to us, to hear how bad we have it and to acknowledge it.  But actually he already knows.  He is confronted with it all day long and if he allowed himself to engage too much on an emotional level he wouldn’t be able to do his job. It would be utterly soul destroying, and I still find it remarkable that he is able to do the job at all.

So, instead, he focuses on each person as a case.  He takes it seriously, and looks at each person as an individual with different problems and different needs, but there is a barrier in place that lets him do his job.  At one point when we briefly touched on something outside of ME/CFS, the man suddenly came alive in front of me; passionate and talkative.  This was the real man before me, but as pleasant as the man is, I realised that he is not the man I need.  The man I need is the clinician, the man who looks at me not with warmth, but with an analytical eye.

I should make another observation at this point: De Meirleir is a man committed to our disease.  He could easily go and work on something more fulfilling, more self-serving.  But he doesn’t.  My understanding is that De Meirleir doesn’t even take a salary from his clinic, his only income coming from the University where he is a professor.  It is hard to imagine how he finds time to conduct lectures, but somehow he does.  Indeed, it is not just De Meirleir who works hard at the clinic.  All his staff do.  They don’t stop all day, going from one task to the next with great efficiency.  The clinic runs like a well-oiled machine, working at full capacity at all times and with great professionalism.

After my appointment with De Meirleir I stayed to finish my lactose breath test (several tests half an hour apart) and the nurse provided me with a stool test kit and a pot to piss in (more than the UK government ever provided me with) and I returned to the hotel for a rest.  The next day, the hotel driver dropped me off at the clinic and I began my fructose breath test.  The nurse ran through the blood tests that De Meirleir proposed to run, which would go to three different blood labs.  He provided me with a copy of the tests and asked me if I was happy with them all.  He explained what they were all for and I signed off on them.  I was pretty happy with the tests being run.  Only one I thought was perhaps not worth running but I decided to go ahead with that one as well.

Blood

Then came the blood draw. I wasn’t looking forward to this; usually a phlebotomist will stab me a dozen times in frustration in an effort to find a vein and it’s quite an ordeal for us both.  But not so this time.  I hardly felt the needle go into my arm and he got it right first time.  He took all the blood needed and it was over in no time.  The guy knows what he is doing.  What a relief.

Cost

It is expensive, but it is good value.  The fee for seeing De Meirleir is €80.  That’s nothing – my train to London cost more – and there is no charge for any of the other staff.  The travel and hotel cost about £350 in total.  The largest expense was the testing.  It varies from one patient to another, but for me it will run to a little less than £2500.  The same tests in the UK would have cost significantly more.  The clinic bill you for the consultation and some of the tests on the day, and the rest are invoiced to you directly by the blood labs. 

Obviously, this is a lot of money, but I see it as money well spent.  This will confirm or rule out a great many viruses, bacteria, moulds and parasites and will also give me a status on my immune system.  I think this is invaluable as these facts, personal to me, will tell me at least some of the problems that I have and knowing I have these problems, I can treat them.  All in all, it has cost a little under £3000.  I am grateful to my family for pulling together to cover the cost.

What next?

My results will take two months or more to get to me.  A number of the tests need to be cultured and that takes time.  Then I expect a further delay as De Meirleir will presumably take a look at them before they are sent to me.  I will then review the results and have a further consultation with De Meirleir either in person or over the phone.  At this point I will start treatment.

There are no guarantees with any of this, but even if it doesn’t work out for me, it’s hard to imagine I will regret it.  I will have done everything I can to get better and I know I have seen one of the best ME/CFS doctors there is.

 

Joel was diagnosed with ME/CFS in 2009 but struggled with the illness for some time prior to this. He loves to write, and hopes to regain enough health to have his novels published.

 

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{ 119 comments… add one }

  • Firestormm January 31, 2013, 11:29 am
    Valentijn

    But if you keep insisting or implying that there is some undeclared conflict of interest that should cause us to distrust Dr Meirleir and the tests he uses, I think you should accept that some people are going to continue to disagree with you.

    That is NOT what I was doing, Val. How about transparency? Knowing who is behind what is being sold and whether or not what is being sold is actually a medical treatment. You adverse to that also or maybe you too think I am some damn plant?

    This is forum. I dare say many folk were aware of his connections and his former research findings of XMRV and testing etc. I ain't writing a dissertation here. Or penning a lecture.

    If you would like some sources outside of those expressed by those two I have already linked, then you'd have to wait. I understand that much of it is in Dutch but I have asked.

    It isn't a big deal who or what Dr Meirlier is or isn't associated with. And yes I realised that in replying to you originally I was indeed raising it but it was I thought in response to you declaration that his disassociated himself 10 years ago with Red Labs.

    There is some contention over that matter. It is hard for me being in the UK hence the link to Johan. I suggest we leave it there.

    You know I don't think there is anything wrong with me being sceptical. I have been burnt by those who operate outside of the NHS. I won't name them. The thing is that ME works against us being a condition(s) defined solely by symptoms.

    It leaves us more open to opinion and to treatments and tests and financial and emotional/mental loss. Sometimes (at the time) it is all too easy – as I know – to feel a need to 'do something' rather than – I don't know – learn to accept that this is my lot in life now and to make the most of it.

    I have experienced periods of relative remission where activities are easier to perform and these were NOT caused by any treatment or protocol that required financial expense.

    Yes, it's my own experience and I am perhaps biased but I would say I am healthily biased. I don't see anything wrong – speaking generally and not in connection to De Meirlier – in asking questions.

    I haven't asked enough in terms of tests and recommended treatments as I said before. On forums we are trying to gain a greater knowledge and understanding – an appreciation of the known facts if you like.

    Sometimes we don't have the ability to gather the information for ourselves and so we share. There's no judgement. I am not telling people not to buy McMAF or whatever it might be.

    We all make decisions. We are all responsible for them. I'd rather be informed as much as I am able before embarking on such a financial investment again.

    I tell you what. I will now send an email to De Meirlier's clinic asking for a financial interests disclosure. I doubt if I will get a reply but I might. If I don't then that won't infer a judgement on my part against De Meirlier.

  • maryb January 31, 2013, 12:07 pm

    I always knew KdM was a director of Red Labs Belgium – it didn't bother me, I don't see why a doctor should present this information before treating you or doing tests, its irrelevant. As long as the lab is reputable and used by other sources then what's the problem?
    I haven't had any improvement, I don't blame KdM though, I'll do a couple more visits and hope something works, people pay their money and put their trust in ME doctors, no guarantees but the lucky ones may get an improvement, and improve their quality of life, dramatically for some.
    As for the clinic, my e-mails have always been answered promptly, prescriptions faxed over to UK chemists very quickly, repeat prescriptions put in the post the same day of request. Brilliant nursing staff when you visit, I could go on.

    I hate these picky discussions, I'm not saying they shouldn't happen but their are just irritating for me, why not focus on the fact that he doesn't charge a lot for consultations, you get the choice what tests you want done and a price list up front, and they aren't astronomical, other private clinics charge much more.

  • Research 1st January 31, 2013, 12:14 pm

    Thanks for your experiences Maryb. It's great to hear the clinic in Belgium can fax over prescriptions to other countries like the UK, presumably a benefit of being in the EU? I was always thinking how one would cope with hostile doctors in the UK who might block prescriptions written by other doctors out of the UK.

    It's really positive to see patients able to finally engage with medical care and and then hopefully make some improvements in their health by having alternatives to treatments that dont' work (CBT, GE).

  • David Egan January 31, 2013, 9:44 pm

    Firestormm, we have listed some research papers by Kenny De Meirleir and others supporting his findings at http://www.cfs-ireland.com/scientific/1.immune.htm
    There are categories for other biological dysfunctions and accompanying scientific papers on our web site at http://www.cfs-ireland.com/listing.htm
    And the Scientific Evidence section gives one a good scientific overview of the illness – http://www.cfs-ireland.com/scientific.htm

    As regards conflicts of interest and Kenny De Meirleir, it may be a consideration but it is far more important to measure the effectiveness of his diagnosis and treatments in terms of people recovered or partially recovered < 70% full capacity / full health.

    We have a listing of 20 top ME/CFS clinics in the world on our web site http://www.cfs-ireland.com and have contacted them with a view to establishing exact number of recoveries and partial recoveries. If one recovers, does it really matter if there are conflicts of interest ?

    ME/CFS is a multi-layered illness encompassing many biological abnormalities and dysfunctions and infections. And these need to identified, with precision, and treated individually or in paralell. Our web site examines this in detail. ME/CFS is difficult to diagnose and treat, and old outdated dinousaur socialist medical systems in Europe cannot possibly diagnose and treat sucha complex multi-faceted illness. A privitised health system based on new technology, innovation, dynamism, hard work and productivity, openness to new ideas and new insights , and financed through universal insurance schemes is the only realisitic hope for European countries And its very achievable.

  • August59 February 1, 2013, 2:28 am

    I'm very eager to keep following this thread and I would like to say thanks to Mark for writing such a great article about his visit. Dr. KDM, clinic and Redlabs appear to be providing pretty close to the best value of treatment in the world. Doing all of this while providing studies and clinical trials. He always seems to be following the data that is present in research and uses it to further the treatment to his patients, which I can't say is true fo a lot of the other CFS specialist. I understand at times the data seems to want to go in diffeent directions and I believe that is directly due to different subsets that will get sorted out over time I hope.

    Thanks again for a great article!

  • Mark February 1, 2013, 4:36 am
    August59

    I'm very eager to keep following this thread and I would like to say thanks to Mark for writing such a great article about his visit.!

    Apologies for any confusion: I merely published the article, Joel (snowathlete) wrote it. (Technical changes should make this clearer in future). I agree it's a great article. :)

  • August59 February 1, 2013, 4:58 am

    Thanks Joel!!!

  • barbc56 February 1, 2013, 7:38 am

    I found the following among Dr. De Meirleir's research.
    Here is a list of De. Meirleir's research:
    http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirleir K[Author]&cauthor=true&cauthor_uid=19086101

    Mods. Do we need a separate thread? I don't want to take away focus on SnowAthlete's experience.

    Barb

  • Firestormm February 1, 2013, 8:41 am
    barbc56

    I found the following among Dr. De Meirleir's research.
    Here is a list of De. Meirleir's research:
    http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirleir K[Author]&cauthor=true&cauthor_uid=19086101

    Mods. Do we need a separate thread? I don't want to take away focus on SnowAthlete's experience.

    Barb

    And why the heck didn't that work for me? I am definitely going nuts 😮

  • barbc56 February 1, 2013, 9:13 am
    Firestormm

    And why the heck didn't that work for me? I am definitely going nuts 😮

    It's magic.:D

  • Sushi February 1, 2013, 8:20 pm
    Firestormm

    And why the heck didn't that work for me? I am definitely going nuts 😮

    Not nuts 😉 but you spelled his name wrong!

    Sushi

  • Research 1st February 1, 2013, 9:57 pm

    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. 😎

    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. 😆

    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.

  • snowathlete February 2, 2013, 1:09 am
    SickOfSickness

    Thanks.

    I hope you improve a lot.

    The part about his analytical eye is excellent.

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

  • Sushi February 2, 2013, 1:28 am
    Research 1st

    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.

    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

  • In Vitro Infidelium February 2, 2013, 12:39 pm
    Firestormm

    Of course I will bow to IVI on this one (and his isn't the only commentary I have read in recent times about the RED Labs businesses)..

    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

  • Valentijn February 2, 2013, 3:49 pm
    In Vitro Infidelium

    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

    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.

  • Research 1st February 2, 2013, 4:59 pm
    Sushi

    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

    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.

  • Jenny February 2, 2013, 5:05 pm
    Research 1st

    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.

    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.

  • Research 1st February 2, 2013, 5:31 pm

    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:

  • In Vitro Infidelium February 2, 2013, 5:34 pm
    Valentijn

    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.

    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

  • Sushi February 2, 2013, 8:10 pm
    Research 1st

    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.

    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

  • GcMAF Australia February 2, 2013, 9:33 pm
    Research 1st

    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. 😎

    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. 😆

    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.

    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.

  • GcMAF Australia February 2, 2013, 11:46 pm

    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

  • Firestormm February 3, 2013, 5:01 am

    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.

  • Sushi February 3, 2013, 5:14 am
    Firestormm

    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.

    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

  • barbc56 February 3, 2013, 6:04 am

    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

  • GcMAF Australia February 3, 2013, 6:25 am
    barbc56

    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

    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.

  • GcMAF Australia February 3, 2013, 7:00 am
    Firestormm

    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.

    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.

  • beaverfury February 3, 2013, 7:05 am

    '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:

  • GcMAF Australia February 3, 2013, 7:26 am
    beaverfury

    '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:

    Thanks beaverfury.
    there is a conference in Sydney on Tick/Lyme diseases
    http://www.karlmcmanusfoundation.org.au/
    This includes the CEO of Infectolab
    and the chief medical officer of Australia will be attending.
    Hopefully this will be a big leap forward.

  • alexa February 3, 2013, 6:50 pm
    Research 1st

    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. 😎

    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. 😆

    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.

    I was diagnosed with Brucella by De Meirler and currently on antibiotics, not sure how this will affect my disease in the long run, but he told me that many of his patients had other pathogens

  • GcMAF Australia February 3, 2013, 10:38 pm
    Firestormm

    Am a little lost. Is there any reason why when I type 'De Meirlier' into the ncbi pubmed database it only results in the one study from 1991? http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirlier

    I think I'm probably doing something wrong. I know he's published more than that. Not used the search function before. Am such a dunce :) Danke.

    I think Pubmed does not list all "journals/science papers" The whole science publication thing is not necessarily clear cut. and not all that is published is true. Even Nature has science that is fraudulent, at least one famous case in physical science.

  • GcMAF Australia February 3, 2013, 10:44 pm
    Firestormm

    .

    Thanks for your contributions.
    Obviously it is important to consider everything.
    This is what makes PR a great site.
    Bacteria/viruses etc have been around billions of years or so.
    They have been around the block a couple of times.
    Modern science has been around 20 years or so (OK maybe about100 if you include antibiotics)
    So we have a bit of catching up to do.

  • GcMAF Australia February 3, 2013, 10:59 pm
    Research 1st

    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.

    How about a Sydney woman, breast cancer, 20 years ill with something undiagnosed. Diagnosed as having Sarcoidosis some time ago. 2 weeks ago tests came back as having Lyme. Of course the Australian Govt and Drs have "so called proof" that Lyme is not here. Tests

  • Solstice February 4, 2013, 8:58 pm
    alexa

    I was diagnosed with Brucella by De Meirler and currently on antibiotics, not sure how this will affect my disease in the long run, but he told me that many of his patients had other pathogens

    Am on antiobitics for bartonella myself at De Meirleir. And indeed loads of people seem to have pathogens.

  • Firestormm February 5, 2013, 9:34 am

    Has anyone read what Dr Jamie Deckoff-Jones had to say on her latest? Pertinent perhaps though only an opinion and one borne through bitter experience. I haven't accessed the Medscape article myself yet:

    Having learned the hard lessons personally with respect to unvalidated tests from small labs with special interests, I came across this on Medscape and think it needs to be shared: Lyme Culture Test Causes Uproar.

    The link works if you have an account, but here is the first paragraph and exerpts of the article about a culture for Borrelia burgdorferi from a lab called Advanced Laboratory Services:

    A new chapter in the Lyme disease controversy opened in September 2011 when Advanced Laboratory Services, Inc, announced the commercial availability of a new culture test for Borrelia burgdorferi. Some Lyme patient advocacy groups and physicians began encouraging patients to have the $595 test, but others are concerned about the early commercialization of the still-unvalidated test. This concern may result in changes to how the US Food and Drug Administration (FDA) regulates so-called “homebrew” or laboratory-developed tests (LDTs)…​
    Soon after Advanced Laboratory Services’ initial public announcements about the new culture test, emails and public statements attributed to Dr. Burrascano began appearing on Lyme-related Internet sites, including comments that the culture test was approximately 94% sensitive and 100% specific.​
    Dr. Burrascano told Medscape Medical News that the validity of the culture test was established using blood samples provided by physicians and that the identity of Borrelia was confirmed by its ability to grow in Borrelia-specific media, by its characteristic appearance on darkfield microscopy, by reacting to published Borrelia-specific polyclonal and monoclonal immunostains, by DNA polymerase chain reaction (PCR) at 2 different loci, and by direct DNA sequencing. These data are so far unpublished…​
    And here is the disclosure statement at the end of the article:​
    Dr. Burrascano has disclosed no financial interest in the laboratory, in the Borrelia culture, or in any intellectual property and receives no commissions from the tests. Dr. Burrascano is senior vice president of medical affairs and medical director for Advanced Research Corporation, a contract research organization with the same president and corporate address as Advanced Laboratory Services, Inc. Dr. Mead And Dr. Green have disclosed no relevant financial relationships.​

    Oy vey. Here we go again. Another unvalidated test to justify bad treatment. What’s wrong with the unvalidated tests they’ve been using all along? The ones that are almost never negative for various tick borne diseases?

    And this, hitting the presses coincident with the WPI promoting Dr. De Meirleir’s lecture, yet another doctor with a history of profiting from unvalidated lab tests. I think I’ll stop now, so my blood pressure stays down, and end on a positive note.

  • maddietod February 5, 2013, 3:13 pm

    My doctor ordered this "free test" from Advanced Lab Services, and I think it's a marketing scam. The test kit is free, but when you send it in you have to pay $595 by credit card. What's completely free is enrollment in some trial they're going to set up in the future. but they don't even have an enrollment questionnaire yet.

    It took a half hour on the phone for my doctor's office to get this information out of the lab people. They are being exceedingly not-transparent.

    Madie

  • snowathlete February 5, 2013, 4:20 pm

    Not sure this is very relevant to the topic to be honest. Culturing Borrelia is nottiriously difficult and there are lots of people trying to do it. It's controversial in part because not everyone agrees on whether or not the current tests are reliable or not. The FDA do say that diagnosis should be clinical, not based on the existing FDA approved tests though which suggests the FDA don't consider them entirely reliable.

    Mayb this lab has a good test, maybe it doesn't, but eventually a culture test from someone will likely get FDa approved and be more reliable. But as we know too well, getting FdA approval is not quick, cheap, or straightforward. At the moment, if you buy a test that isnt FDA approved then perhaps you don't know what you're getting but that doesn't mean it's a scam. Though certainly i would be wary if like Madie you cant get some straight answers when you ask the lab. As I said in my article though De Meirleirs staff were very forthcoming with info when I asked for it, which sounds completely in contrast with this other lab selling this Borrelia test. I'm happy that labs are developing and making tests available though, else your options are even fewer.

    As for the bit about de meirleir at the end, I can understand the view, but he wasn't the only one to think XMRV was true was he! People wanted to buy tests for it before it was confirmed, and that was their choice. Personally, I didn't get one because I wasn't convinced there was enough evidence to justify the cost. People should probably be cautious in the same way regarding Lyme tests though I can understand with the lack of good alternatives, why people suspecting Borrelia might still decide, knowing the risks, to buy such a test despite the lack of FDA approval.

  • GcMAF Australia February 5, 2013, 10:19 pm

    From Infectolab in Germany
    fresh Borrelia infections in Germany in 2009:- around 800.000 new cases. So if around 10 % get chronic statistically, we find around 80.000 chronic Lyme cases just in Germany.
    see also http://www.hilysens.eu/

  • GcMAF Australia February 5, 2013, 10:29 pm

    Don Lewis in Melbourne has 40 Lyme people, newly diagnosed.
    He thinks that the immune system with Lyme people was low before the Lyme set up shop.
    So he is taking a particular protocol. It is early days.
    (it seems many people made their own rash treatment descisions and end up herxing badly??)

  • barbc56 February 5, 2013, 11:26 pm

    Dr. Joseph James Burrascano, Jr is an ILAD's doctor and not a IDSA doctor, which would call into question the diagnostic criteria of Lyme disease used for this test as well as the recognition of chronic Lyme disease which does not have any scientific basis. ILAD's doctorst often prescribe dangerous long standing antibiotic treatment.

    When people who have been treated for Lyme disease recover but later come down with its symptoms again, is the illness a relapse or a new infection?

    The question has lingered for years. Now, a new study finds that repeat symptoms are from new infections, not from relapses.

    The results challenge the notion, strongly held by some patients and advocacy groups, that Lyme disease, a bacterial infection, has a tendency to resist the usual antibiotic treatment and turn into a chronic illness that requires months or even years of antibiotic therapy.

    The conclusion that new symptoms come from new infections is based on genetically fingerprinting the Lyme bacteria in people who have had the illness more than once, and finding that the fingerprints do not match. The result means that different episodes of Lyme in each patient were caused by different strains of the bacteria, and could not have been relapse

    http://www.nejm.org/doi/full/10.1056/NEJMoa1114362

    The IDSA guidelines were the subject of an antitrust investigation in 2006 by Connecticut’s then attorney general and current U.S. Sen. Richard Blumenthal, who examined whether the authors had conflicts of interest and failed to consider divergent medical opinions.
    As part of an agreement to end the probe, IDSA voluntarily agreed to a review of the guidelines by an independent scientific panel. In 2010, the group reported that no changes needed to be made, that there is no convincing evidence for the existence of chronic Lyme infection, and that long-term antibiotic treatment of what some doctors describe as “chronic Lyme disease” is unproven and unwarranted.
    The Centers for Disease Control and Prevention stands by the IDSA guidelines. Dr. Paul Mead, chief of epidemiology and surveillance activity at the CDC’s bacterial-diseases branch, tells the Health Blog that could change if more contrary evidence emerges.
    One explanation for what is described as chronic Lyme may simply be “post-infectious complications,” he says. Studies of long-term antibiotic treatment are mixed, “but overall don’t demonstrate that people on the antibiotics do better than those with a placebo,” Mead says.

    http://blogs.wsj.com/health/2012/03/27/doctors-clash-over-best-treatments-for-lyme-disease/

    Barb
    ETA. I thought we had a separate Lyme board but it looks like Lyme topics are under Other Health News and Research.

  • GcMAF Australia February 6, 2013, 12:19 am

    This question of relapse versus new infection then seems to fit Dr Lewis's opinion that the immune system is not working properly before the tick bites. Also could be that there is some immune suppression by existing Lyme which allows another strain to infect??

  • snowathlete February 6, 2013, 1:08 am

    How do we know that they weren't infected with multiple strains in a single event?

  • barbc56 February 6, 2013, 1:45 am

    I think both of the above hypothesis are possibly and are certainly food for thought but need to look into these questions more thoroughly to see how probably they are. I need to find some sources and would appreciate any.

    Thanks in advance.
    Barb

  • maddietod February 6, 2013, 1:30 pm

    snowathlete, I thought this was a marketing scam, not that the test is bad. Sorry if I took this thread in the wrong direction.

  • snowathlete February 6, 2013, 3:34 pm

    madietodd, no worries, no need to appologise. I think the forum could do with a Lyme/Tickborne pathogens section too.

  • Daffodil February 7, 2013, 3:52 pm

    hi all. i heard dr. demeirleir tests for 67 different types of bacteria. would it be possible to find out which ones so one may be able to have testing done in north america?

    someone implied to me that for severe neuro cases like mine, he might prefer IV antibiotics (if i test positive for some bacteria)…however, i will not be able to afford IV. i see that many of you were given antibiotics. did dr. demeirleir say anything about IV being better?

    thanks :)
    sue

  • Daffodil February 8, 2013, 1:23 pm

    can someone tell me if they have been helped with the antibiotcs Dr. DeMeirleir prescribed? Is he prescribing for LPS / bacterial translocation from the gut, or is it always for Bartonella / Borellia? I wish I could talk to someone who knows this stuff! :-/

  • snowathlete February 8, 2013, 5:48 pm

    Is IV just to get more of the actual drug into the blood or is the drug used different? I don't know under what scenario DeMeirleir does this I'm afraid but hopefully someone else does and will reply.

  • Daffodil February 8, 2013, 7:43 pm

    thanks snow. i understand he does not do this often..the IV…but i have been reading and if one has neuro problems, IV is recommended – at least when it comes to lyme bacteria. perhaps he doesnt do it often because most of his patients are from afar
    xoxox