Norwegian TV: Patients pay out of pocket for private Rituximab treatment

[Sushi]

I would never go to KDM. I think he is engaged in non-scientific experimental treatment of patients which could be dangerous. It also costs a fortune. Given the fact that he hasn't published a study on a specific treatment that works I don't see why one would spend so much seeing him.

I'm not sure why you have that impression. I don't feel experimented on--rather thoroughly tested with treatments given that correspond to my test results. He is pretty careful about the "dangerous" aspect. It doesn't cost that much really--consult about 80 euros, testing and then treatment which is mostly paid for by insurance. I have had a good experience with him and have improved quite a lot.

That is not to say that I'd discourage anyone from trying Rituximab, just that KDM is also a good option.

 

[deleder2k]

I have heard many stories from patient treated by him. I think most Europeans, are entitled to free blood work. He charges around a few thousand euros for that. Some of the tests goes to labs he have deals with. Some of these labs offer highly unverified tests, including lyme tests.

He has said that 80% of PWME has lyme. He has said this several times according to patients (and now also in a radio interview I think). He has mean this for a long time. This is an invalid argument before he publishes some proof. He has had plenty of time to do it. (Found on thread on PR on this):

I just went to an LLMD for the first time, want to get the more sophisticated Lyme and other pathogen testing. He told me that they are finding 80% of people with CFS are testing positive for Lyme using labs like IgeneX.

I am very worried because I think in a corner of my mind that these LLMDs, who don't take insurance and are very expensive, are pushing people to turn up Lyme positive to make $$$$ by using labs that might be good but seem to have such a low stringency for what is positive that almost everyone is positive.

I tested negative twice using the CDC two-tiered test from Quest, but it's very difficult to know by symptoms because the symptoms between CFS and Lyme are the same.

Has anyone done the IgeneX test and turned up negative?

Standard treatment protocol can be a cocktail to clean out lyme /and or co-infections, armour thyroid, long term use Azithromycin 500mg, and GcMAF 50 nanogram S.C/week, 4ME 2cc ++

In addition to a lot of more or less suspicious things like: Samento, Banderol, Cumanda, Smilax, Artemisinin which are being made by an Ecuadorian company: http://www.nutramedix.ec/

I don't know if he gives this out to every patient, but I have been speaking to a few who have all been prescribed the above for use. Many are extremely expense, and the common and probably most serious factor here is that he seems to treat patients that they all have lyme (according to his statement). I have spoken to 3 patients who all said they deteriorated significantly after starting treatment by dr. Meirleir. I don't know the specifics though, but many of the drugs he uses isn't indicated for what he is using them for.

I'am sure many on this forum here have more information regarding this. I don't rule out that he has helped quite a few patients, but the mix of a wide range of unverified tests which costs a lot, his 80% of patients have lyme statement, and the fact that he has "deals" which many of the labs he uses.

According to the cost estimates I've heard that the expense for the full package can easily pass the price of a consultation with an oncologist who "specialises" himself in chronic fatigue/lyme disease/and ME + a year worth of treatment of Rituximab including infusions - in other words >€10,000.

Perhaps I am somewhat biased, and I may have misunderstood something. If I have I would appreciate if anyone could update or correct me. I do think that off-label use of medicines should be used, but I feel he has a relaxed relationship to evidence-based medicine. He has seen thousands of patients with ME. I wonder why he hasn't published studies on his treatment, and the effect of that.

 

[Sushi]

he seems to treat patients that they all have lyme

He has neither diagnosed me with nor treated me for Lyme, though he has found that many ME/CFS patients have been exposed to Lyme and he seems to think it plays a part in the pathogenesis for many. Other reseachers have similiar hypotheses.

the fact that he has "deals" which many of the labs he uses.

He was one of the founders of Redlabs which he does use as they have specialized tests that he feels are valuable. I doubt if many government insurance plans will pay for specialized testing from any lab--US government insurance certainly doesn't pay for it. He no longer has an interest in Redlabs and has no interest in any other lab he uses.

He has seen thousands of patients with ME. I wonder why he hasn't published studies on his treatment, and the effect of that.

He has published quite a lot and has several articles ready to publish. But his sample sizes are small as he doesn't have funding for large studies. Journals also have to accept the articles once they are submitted. He published at least one article this year. I remember there was a thread on it here.

All I can say is, personally, he has helped me a great deal.

 

[justy]

My impression is that he has a relaxed relationship with science based medicine.

Quite the opposite. KDM is rigorous in keeping up to date with the latest scientific research. He is a professor at the University of Brussels and still lectures there. As Sushi has pointed out he also conducts his own research and has published many papers.

I think he is engaged in non-scientific experimental treatment of patients which could be dangerous. It also costs a fortune

His treatments are all based on extensive testing. He makes no money from the tests, they are all paid for directly to various labs that he uses (not just RED Labs). I don't feel I have been offered 'experimental treatment'. He tried very hard to find abnormalities and then treat them according to the latest knowledge. Most treatments in ME are somewhat experimental, including most definitely Rituximab.

It is not expensive. He offers in depth testing, the money goes to the labs dierectly, not in his pockets. Ypou can set a budget or refuse any tests. His clinic offers much cheaper treatments than any other I have come across. As an example one set of treatments may cost approx. 3,000 euros in the clinic, but costs approx. £32,0000 in the only clinic in the UK to offer similar.

A treatment I had there was cost price for the drug and 15 euros for the nurse, the saline, the needles etc - and I was there for three hours!!

His follow up appts are 60 euros each. Treatment over time is not cheap - drugs are expensive when privately sourced (even more so in the UK than in Belgium), retesting to see what progress has been made can also add up - but you can always say if you cant afford it. This is the same everywhere people with ME are treated, with the exception that treatment in the UK is far more expensive!

 

[paul80]

Thanks for the translation deleder.

It says that the patient got better after 3 months. I thought the most common response was about 1 month.

I'd also like to know if anyone ever needed more than one infusion to get a response. Or if you're going to get a response you will get it after the first infusion.

I'm seriously considering doing this if i can get the money. I was thinking i could just get a ferry over (i'm in Scotland) and would be able to lie down on the trip hopefully.

 

[BurnA]

Thanks for the translation deleder.

It says that the patient got better after 3 months. I thought the most common response was about 1 month.

I'd also like to know if anyone ever needed more than one infusion to get a response. Or if you're going to get a response you will get it after the first infusion.

I'm seriously considering doing this if i can get the money. I was thinking i could just get a ferry over (i'm in Scotland) and would be able to lie down on the trip hopefully.

@paul80 there is plenty of information regarding rtx treatment in the threads already - I think you should take a look especially any thread discussing the fluge and mella trial results.
For now though I'll answer your queries briefly, the median response is more like 5 months and generally the earliest responders are at 3 months. Everybody gets more than one infusion.

 

[deleder2k]

@justy Perhaps I was unclear. I did not mean that he charged patients too much himself, but to follow his treatment plans it costs a fortune - at least for many patients.


I know he is a lecturer, and I am sure he wants to do the best for his patients.

He has stated that 80% of PWME has lyme. I guess that is based on unverified tests to different labs throughout Europe. He has or is prescribing: armour thyroid, long term use Azithromycin 500mg, and GcMAF 50 nanogram S.C/week, 4ME, Samento, Banderol, Cumanda, Smilax, Artemisinin.

The fact is that he frequently has recommended patients to take herbs or drugs that have not been tested properly at all. Perhaps it should be legal, I don't know. Many of the things he advises patients to take are horrendously expensive. I think doctors should be careful when it comes to advising patients to take drugs that haven't been tested rigorously, especially when they are expensive. Mixing a cocktail of drugs we don't know the effect of could have implications. I think there is a major difference in treating someone with Rituximab which has shown effect against ME in one phase 1 study, and two phase 2 studies. In Norway a doctor like dr. Meirleir would probably loose his medical licence quite fast. In fact there is a undergoing investigation by Norwegian health authorities since he has been prescribing patients with long term antibiotics.

I am sure he wants the best for his patients, and that quite a few patients says that they have benefitted from his services, but I remain skeptical

 

[frujo]

I have now made up my mind, I will go to Kolibri instead of KDM. I feel there is now way I might now which one is the best for me, it´s lika a lottery! But after reading threads here and on Facebook I finally made up my mind. I have an appointment next friday for blodtests and meeting with the doctor there, I heard he was one of the best oncologist in Norway and he also know a lot about ME - that feels really good!

 

[BurnA]

have now made up my mind, I will go to Kolibri instead of KDM. I feel there is now way I might now which one is the best for me, it´s lika a lottery!

Just my opinion, these two options are polar opposites. If you have ME/CFS then @deleder2k is correct, rtx is the most tested promising drug out there. It's not approved but most people probably agree it looks promising.
I don't know much about KDM other than what I have read here and again I agree with @deleder2k

 

[frujo]

Yes I do have ME/CFS, but I have never been testet on the Elispot - test, just the Elisa test. I am very uncertain what I think about the lyme debate.

 

[Asa]

Does anyone in the thread have an opinion on the Staph vaccine, as it was for a time at least used in Västra Götaland (neighboring Norway - though some distance south) at Gottfries Clinic?

Does anyone know if any private doctors in Norway manage ME with this vaccine? The vaccine is cheaper than rituximab, to my understanding. Is rituximab safer? Does rituxiamab positively affect more people and/or affect them more positively than the vaccine?

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Re thalidomide, I'm assuming the reference was to it not be properly researched? The quote from Grillo-López, though, was about the many bureaucratic months engaged in the *name* of the drug... a rose by any other name and such? Though I understand names are probably designed so as to not be easily confused, but still -- five months?

I still don't have a problem with ME associations helping the ME community gain affordable *access to be evaluated* for a particular drug... especially in circumstances where governments have let people rot for decades. Ultimately, those who volunteer to go first and those who pay to go first are all still guinea pigs, yes?

I'm pretty sure I'd be at the first available appt, if I had the money... I was told at one point that for the last round of volunteers, the Norwegians turned away about 1500 people. That's a lot of desperate people...

 

[paul80]

@paul80 there is plenty of information regarding rtx treatment in the threads already - I think you should take a look especially any thread discussing the fluge and mella trial results.
For now though I'll answer your queries briefly, the median response is more like 5 months and generally the earliest responders are at 3 months. Everybody gets more than one infusion.

Sorry for spreading disinformation, my brain is so bad just now, feel like i havn't slept in a week.

 

[Apple]

I have now made up my mind, I will go to Kolibri instead of KDM. I feel there is now way I might now which one is the best for me, it´s lika a lottery! But after reading threads here and on Facebook I finally made up my mind. I have an appointment next friday for blodtests and meeting with the doctor there, I heard he was one of the best oncologist in Norway and he also know a lot about ME - that feels really good!

Hey @frujo I was wondering if you could give us an update on what you decided to do.

 

[frujo]

Hey @frujo I was wondering if you could give us an update on what you decided to do.

Hello, yes I have made up my mind and have now taken 2 infusions of Rituximab. The last on monday.

 

[Apple]

Hello, yes I have made up my mind and have now taken 2 infusions of Rituximab. The last on monday.

Oh wow! Good for you!! How are you feeling so far?

Would you be willing to make a thread of your own and update us on the process/how it's going etc

 

[frujo]

I am so sorry but I cannot share this information because of the study. It is important that the participants cannot guess if they got Rtx or not, therefore I cannot share my process or side effects, I am sorry.

 

[Gingergrrl]

I am so sorry but I cannot share this information because of the study. It is important that the participants cannot guess if they got Rtx or not, therefore I cannot share my process or side effects, I am sorry.

So you do not actually know if you got RTX or placebo? Are the treatments in Kolibri part of a research study? I am confused now! I thought patients were doing them by choice outside of a study if the doctor felt they were a good candidate?

 

[frujo]

So you do not actually know if you got RTX or placebo? Are the treatments in Kolibri part of a research study? I am confused now! I thought patients were doing them by choice outside of a study if the doctor felt they were a good candidate?

You are right, I am not in the study. The treatment at Kolibri is not part of any study. But we stil must be quit about our sideeffects so our treatment doesn't affect the people in the study. They might know what they get if we tell everyone about how it feels to get rtx. Are you with me?

 

[Gingergrrl]

@frujo I get what you are saying and don't want anything to jeopardize the study. Was just confused since many people get RTX for lymphoma or autoimmune conditions and if they were to discuss it, it seems like that would not affect the study b/c at a different doctor and location and maybe even different dosing and protocol? It's a fairly common treatment for different conditions. Thanks!

ETA: just wanted to clarify b/c was curious if someone had RTX at OMI or with a regular rheumy, and spoke about it, would that jeopardize the Norway study? That was my main concern but not sure if I asked it well!

 

[Apple]

I am so sorry but I cannot share this information because of the study. It is important that the participants cannot guess if they got Rtx or not, therefore I cannot share my process or side effects, I am sorry.

That's okay. No worries. I'm really happy for you that you've got this opportunity available to you, *fingers crossed*