The De Meirleir Experience

View the Post on the Blog

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

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



Trying 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.


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

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.




View the Post on the Blog
 

Comments

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.
 
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
 
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
 
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.
 
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.
 
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.
 
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:
 
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
 
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
 
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.
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.
 
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
 
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.
 
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
 
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
 
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.
 
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.
 
'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: