To Get Tested For XMRV Or Not. Oh No, Not Again!

by Johan on June 9, 2011

This is a story I should have told 5 months ago, but as I have put XMRV testing and ME/CFS treatment at the Himmunitas clinic behind me, I kept postponing it. My apologies. Given the 2 recent negative papers in Science (“Recombinant Origin of the Retrovirus XMRV” and “No Evidence of Murine-Like Gammaretroviruses in CFS Patients Previously Identified as XMRV-Infected“) the question of XMRV testing may seem moot, but people keep asking me for advice on whether to get tested or not and whether to go to the Himmunitas clinic to see prof. dr. De Meirleir or not. Instead of replying to those emails I might as well put the story on my blog. This article is about my XMRV tests. Maybe one day I will write about all the tests, the treatment by prof. dr. Kenny De Meirleir at the Himmunitas clinic, and the reasons (plural) why I quit, but to cut a long story short, I do not recommend prof. dr. De Meirleir or the Himmunitas clinic for treatment of ME/CFS.

I have written 2 earlier posts on whether to get tested for XMRV or not:

  1. To Get Tested For XMRV Or Not. That’s The Question (2010-03-02)
  2. To Get Tested For XMRV-MLV Or Not. That’s Still The Question (2010-09-26)

As you may have read in the second article, otherwise I recommend you do so now, I agreed to get tested (XMRV co-culture and MLV PCR) despite my lack of trust in the reliability of the available XMRV tests. I felt it was either to trust my doctor and get tested or quit treatment. As I was only 3 months into treatment, I reluctantly agreed to get tested. I had lot of tests that day, and they gave me a lot of papers to sign. What they didn’t gave me was a calculator. On the way home I did the sums and it added up to €750.

During the 3 months (!) between the tests and the next consultation, when I would receive the results, I didn’t gave it much thought. I was more interested in the other tests (immune system) than in XMRV because I had no intention whatsoever of starting the very expensive and experimental treatment based on GcMAF, Nexavir and Artesunate, estimated at between €6000 and €7000 a year, not including consultations, extra tests, antibiotics and supplements.

My consultation with prof. dr. De Meirleir at the Himmunitas clinic was on the 20th of December 2010. I told him how I felt, that I had gotten worse, actually worse than I have ever been, the negative effects of the subsequent antibiotic treatments, … He told me that more tests were needed, but that he would write me a letter with the results of the previous tests, the new tests and a new treatment plan. That was it. Consultation was over. WTF! I paid €750 for tests and he couldn’t even be bothered to discuss them, let alone give me the results. I had no intention of leaving without more information. He gave in and told me he was surprised that my XMRV and MLV test came up negative because I fit the profile, but that the serology test would … blahblahblah. I told him no more XMRV tests until science caught up with the hype.

I did manage to squeeze some information out of him about the other test-results and the new treatment plan, but he kept referring to the letter he would write. To only thing I learned about the new tests was that it involved a gastroscopy and stomach biopsy to test for some viruses and that it could only be done by one specific doctor in Vilvoorde (near Brussels).

A week later (which is very fast) I received 2 letters, one with the treatment-plan and test results and one with the appointment for the gastroscopy including a bill for the tests.
When I compared the list of tests-results with the report, I noticed that 2 tests were missing in the report, namely VDR polymorphism (FOK1 and BSM1) and methylation cycle polymorphisms (MTHFR 677C/T and 1298A/C)). I did some research on Google and on patient-forums and learned that those 2 (experimental?) tests were for an experimental treatment (GcMAF) in case I tested positive for XMRV or MLV. When I was tested in September, I was told they were tests for the next treatment, not that they were for an experimental XMRV treatment in case I tested positive. I felt scammed. I still don’t know what the results mean, but I guess it is no longer important.
Then I opened the letter with the appointment for the gastroscopy and found a list of the viruses I was to be tested for, including … *drumroll* … XMRV and MLV, via PCR.
These were the final straws, I cancelled all future appointments and quit treatment. Like I would agree to get tested by PCR one week after the contamination papers appeared in Retrovirology.

Conclusion

I advice against paying for a XMRV or MLV test. An XMRV test is something you want, not something you need. Save that money for a rainy day.
I do not recommend prof. dr. Kenny De Meirleir or the Himmunitas clinic for treatment of ME/CFS.

PS: If I would have written this article before the 2 negative papers appeared in Science, I would have told you there is XMRV research into ME/CFS and then there are the XMRV tests. For the XMRV research the jury is still out, but XMRV testing is a different matter. Given the many negative articles in which laboratories from all over the world failed to find the retrovirus in the blood, but did find it as contamination, what is the chance that the commercially available XMRV tests are reliable? Answer: slim to none.
Right now, the most positive thing I can say about XMRV research as cause of or contributing factor to ME/CFS is that it is on life-support.

Doctors are men who prescribe medicines of which they know little,
to cure diseases of which they know less,
in human beings of whom they know nothing
Voltaire

Picture: DOS Screen – Virus Warning by carlsilver from stock.xchng [link]

{ 39 comments… read them below or add one }

Rutt June 9, 2011 at 6:38 pm

Sorry to hear about your negative experience. My treatment at Prof. De Meirleir has, after about 1 1/2 year, got me out of bed and I am pushing 80 at the Karnofsky Score.

I am writing this comment to show that there are different experiences with De Meirleir and his treatment.

I wish you all of good luck!

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Johan June 9, 2011 at 7:17 pm

@Rutt
Yes, there is the occasional positive story, but they are so few. And as De Meirleir doesn’t publish it is hard to tell whether the positives are significant and cannot be explained by spontaneous remission or placebo-effect. I have experienced a remission as well a couple of years ago.
Anyway, I am happy for you that you are better.

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Willow July 7, 2011 at 8:16 am

what do you mean that KDM “doesn’t publish”? he has lots of papers published, including many recent papers. His gut study, etc. Is there something specific you wanted him to publish that he didn’t?

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Johan July 7, 2011 at 9:15 am

@Willow
Two years ago he showcased his neurotoxic metabolite test, paper soon to be published. Have you seen it?
A decade ago he treated patients with Ampligen. He has been treating patients with nexavir for years. He has been treating patients with antibiotics for years. Have you seen any publications in peer reviewed journals on the results?
He has made several announcements relating to XMRV between 6 months to a year and a half ago: new method to detect XMRV by European virologist, XMRV in semen, … All soon to be published.

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Willow September 4, 2011 at 11:44 pm

ok, thanks for the clarification

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bob June 9, 2011 at 7:09 pm

Well he can’t put you on ARVs yet can he and they will need to develop new drugs for a HGRV.

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Johan June 9, 2011 at 7:22 pm

@bob
There is no proof yet that XMRV is pathogenic, instead it is almost certain that it is contamination.
And as far as HGRV is concerned, that is just marketing. On Google Scholar you will find that HGRV stands for High Gastric Residual Volume.

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bob June 9, 2011 at 7:10 pm

Also, how do we know you even saw this doctor?

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Johan June 9, 2011 at 7:26 pm

@bob
LOL. I sometimes despair at the lack of sceptical thinking from fellow patients, but I never thought I would be at the receiving end of it.
Well, I have lots of test-results, reports, letters and bills. What would be acceptable proof? A letter with the heading of the Himmunitas clinic?

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Esther June 11, 2011 at 9:22 pm

Dear Johan,
As one who has just started KDM’s treatment (doing the antibiotics now), I read what you have to say with great interest and, I must say, some trepidation. I have been getting steadily worse and don’t know of any alternatives to Himmunitas. To be honest, my GP isn’t all that impressed with their treatment plan either. I was happy to hear you are now a lot better, after having abandoned KDM and his treatment. So, would you like to share what has worked for you instead?

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Johan June 12, 2011 at 7:37 pm

@Esther Hi,
I do not know of any alternatives. I am not a lot better, one year ago before I started treatment I could cycle 8km. 3 months later 0 km for 5 months. One month and a half after quitting I was able to go cycling again (2 km). A good 3 months later I am at now 6 km. Correlation is not causation, but as far as I can tell quitting treatment was the main event.
Right now I am experimenting with supplements.
Cheers.

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Katerina June 13, 2011 at 10:54 am

Hello Johan,

I would like to say I’ve had a different experience to you but as a patient of the same doctor, I too am unhappy with things. I spent much more than you on the last tests. The results came with no explaination or information about what they mean for me and when I asked for information I got none. Nothing! It would be better if we could have a little more information along the way.
Good luck to you and thank you for your post.

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Johan June 15, 2011 at 6:36 pm

@Katerina,
I would like to say that we are the exception to the rule, but we aren’t. Patient organisations usually focus on fighting for biomedical treatment and against the “biopsychosocial” approach of this disease, but making a cost-benefit analyses of biomedical treatments provided by individual doctors could be of equal importance. Simply by demanding that doctors who claim to have a treatment for ME/CFS put their cards on the table and publish their data. To proof that they ain’t quacks.

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Els Van Hoof June 15, 2011 at 4:10 pm

Hi Johan, you know I had the same thoughts on whether to do the xmrv tests or not. I had them done, just like you. The Redlabs tests came out negative too. Just like yours. To my surprise I must say because I know I fit the profile perfectly, just like you it seems.

however, I forgot I had given consent to a antibody-test by VipDx as well. So, while I was thinking I was negative for xmrv, a few weeks later I got a letter showing I was positive for antibodies to xmrv.

“What now?” I thought.
Knowing very well that treatment would be experimental to say the least. But under the influence of my partner I agreed to start GcMaf treatment. The price of this treatment adds up to 135 euros per month. Not cheap but not too expensive (not in the range Nexavir so to speak). I’m doing ok on GcMaf. Don’t have much side-effects like many others but no real other effects either.

What changed my quality of life for the better were the antibiotics I started on september 2009. Every month one week another kind and always enteric coated. I am “better” the last two years. Better means I don’t feel sick-to-the-bone anymore. Which is for me a tremendous change. I don’t crash as easily as before after having to go to the shop or something. My mood had improved drastically.

My thoughts on all of this: we’re all different and yes, the treatments are sometimes questionnable and the prices are steep (because of lack of refunding by our medical insurance companies). But after so many years of barely being able to do anything, now being able again to enjoy going to a shop once every week or so … it means the world to me.

My guess in my case: my gut-problems (the antibiotics work against my bad gutbacteria) are at the root of my illness.
Whether these gut-issues are a result of a retrovirus … that’s a question I don’t know the answer to. I hope it is because that would give me future options for treatment. But I’m patiently waiting till the jury is out.

Nothing is sure at the moment. I follow the studies and papers closely as you do. As for xmrv I’m realistically “in doubt”, but then there are the MLV’s … and the new studies (Hanson for exemple) do find those (like Alter and Lo did).
Let’s all be patient and see what science comes up with.

To give advice to other patients … I think that’s tricky. Everybody should make there own minds up as to wanting to get tested and wanting to start treatment.
Some people do get a lot better and telling them not to go to Himmunitas? No, I wouldn’t do that. We’re all addults. Tell them to read the info like we do. And tell them to look at their finances before they go. From there it’s their own choice. Do I take go for treatment or don’t I? I did and I’m happy I did. Because of the antibiotics and because of the information I gathered via KDM concerning my immunesystem. I would never have gotten that info from anywhere else. There simply isn’t anybody who does that kind of profound testing.
Some testing is experimental and questionnable, but most testing is scientifically bulletproof and necessary for genuine ME-patients.

The explanation of the tests is lacking at Himmunitas, I give you that.
But once again: do what I do and look it up and connect the dots yourself or with the help of a fellow patient who is more knowledgable about the medical terminology. I know it should be differently organized. A leaflet with the explanation of the things tested, would be one step in the right direction. But that’s an organizational issue at Himunitas.

And the professor himself: sometimes he doesn’t seem aware that what’s clear to him isn’t at all clear to his patients. But if you ask him to explain, he will. I you have additonal questions, he will answer them too if those questions make sense.

I’m sorry you had this bad experience; I had a bad one too in the past. I stopped seeing him about two years in a row because of that. But in 2009 I went back … with the result that after being soooo sick non-stop for about 8 years at the time, now my illness has become “liveable”.

For now: let’s wait till the jury is out on xmrv and mlv’s …

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Johan June 15, 2011 at 7:44 pm

@Els, Hi,

If you feel better that is great. Even small improvements can have a significant effect on the quality of life. The question remains: Why?
Does he have an actual treatment for ME/CFS? Is it the placebo effect? Spontaneous remission? Or did something in the whole package of medication and supplements (anti-biotics, diet, vitamines, …) provided a treatment for a deficiency or infection? As he doesn’t publish in peer reviewed journals there is no answer to that question. It is bad science and medical unethical.
As you wrote in your comment, you are guessing that gut-problems (bad bacteria) are the root of your illness. After all those tests, all that money and a year (and a half?) of anti-biotics you are guessing. I am not suprised by De Meirleir’s bad reputation among doctors.
I had a different experience with De Meirleir. What struck me when I was a patient was the lack of science. It is very hard to get information out of him and I tried, mostly he refers to the letter he will write.
I doubt whether most testing is scientifically bulletproof, some of it is, some of it isn’t and a lot is questionable. I have heard some of the arguments against Coucke and they sound like peanuts, it would be so much easier to make a case against De Meirleir.

There is a difference between giving advise and telling people what to do. I have no problem with the first, I don’t do the latter. Whether people follow my advice or recommendations or not, that is entirely up to them. I advise against an XMRV test, for which I provided arguments, and I do not recommend De Meirleir, for which I did not provide arguments, but I easily could. Very easily.
I wish more patients would do this: write about how they were before treatment, after treatment, what the treatment was and how much it cost.

The study by Lo/Alter is also questioned right now. Contamination is a possible explanation. The Hanson paper didn’t address those concerns. The world would be a better place if all patients would follow your advice and wait till the jury is finally out on XMRV and MLV. ;-)

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Els Van Hoof June 15, 2011 at 10:15 pm

Hi Johan,

it’s not placebo … i’m sure. I know perfectly well what it is: the antibiotics. Why I know? I don’t respond to all of them well. Recently I have had a very profound setback because of a new antibiotic. The way of getting ill again is so well-known to me after 10 years: first my bowels, then my entire body and last my head … everything feels “sick” … my muscles start aching all over and last but not least: my memory starts playing tricks on me again. Real “blackouts” about fairly important things that were said to me. Something that I experienced much less in the last two years.

But as I said: I’m having a crash at the moment …
So now hoping next month with the well-tollerated ABx I’ll improve again.

I can’t disagree with you on many of your comments. I know what I know, just like you. It’s just that I know some people who really got well because of him and his (yes I agree) bold approach. But it’s my personal choice to go for that bold approach. I’ld rather take risks than have nothing done for me.

As for bulletproof tests: I mean the NK cell function tests for example. They can mesure perforin in any university lab if they wanted to. They could measure cytokines in other labs too. But they simply don’t do that once we’ve got “CFS” in our medical files.
And for that kind of testing I’m grateful to prof. De Meirleir. It has made me absolutely sure that what I have is biomedical.

As for the cost/benefit thing … how could we measure “benefit” in an objective way? By re-testing all the tests run and looking at improvements?
Or by asking patients like they do in the cfs-reference centers? Totally subjective if you ask me …

It’s a difficult disease with endless questions to answer to.
That’s why I hope the retroviral link will still turn out to be solid.
I say “hope” whereas my mind tells me to be patient and realistic.

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Johan June 17, 2011 at 6:47 pm

@Els Hi,
I am not saying he is giving you placebos. I don’t think that a patient can differentiate between placebo effect and the real deal.
You’re sure your crash isn’t related to the GcMAF?
AB made it worse for me. I also couldn’t understand how he can prescribe AB over and over again without any new tests.
Anyway, I hope it works for you.

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Esther June 15, 2011 at 10:49 pm

Hello everyone, thought I’d put in my two cents’ worth. I just completed a course of antibiotics prescribed by DM, and wish I hadn’t. I am worse than ever before and in a lot of pain. OK, luck of the draw, you might say. Granted, not everyone reacts in the same way and maybe it does help some patients. What bothers me about the man is a) his remote control doctoring: everything is done with preprinted forms and ‘letters afterwards’. He simply will not allow for a conversation, let alone discussion of his treatment. His bedside manner isn’t just poor, it’s non existent. And b) his sloppy prescribing. A drug which has to be taken once a day, is prescribed once a week next time, while during the consultation he tells me ‘just for a week’. A thyroid hormone which I’ve been taking for years, he also prescribes ‘once a week’. If I followed his advice, I’d be putting my life in danger. So, either he doesn’t know his medicine and doesn’t check his facts, or he has a very sloppy secretary, neither of which I find acceptable. For me, it’s time to say ‘Soyanara Doctor’!

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Johan June 17, 2011 at 6:36 pm

@Esther One of the reasons I quit was because of the contradictions between the little he said during the consultation and what was written in the treatment-plan. And yes, he doesn’t have bedside manners.

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Marlène July 31, 2011 at 7:51 pm

Dear all

As a long term ME/CFS and lupus sufferer I meet a lot of people and hear many stories. Some of them are positive and others quite sad.

My only advice is never to put all your eggs in one basket. Get yourself a TEAM of doctors to get treatment. Don’t worry about mixing therapies.

I have a family doctor for the regular follow up, a holistic specialist (neural therapy), an internist and one chiropracter. I mix conventional medicines (cortisone, baxters) with unusual medication (low dose naltrexone, procaine and homeopathy).

In general: who do you need to proof your health status to and why?

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Johan August 13, 2011 at 9:57 am

@Marlene Right now I have DFS (Doctor Fatigue Syndrome). Yes, I know it is psychological ;-) Going to devise a new strategy for treatment after the Summer. Getting to try LDN will be on that list. Well, I have to proof my health to the medical advisor if I want to keep disability status and benefits.

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Skopar August 22, 2011 at 1:25 am

Marléne, if you live in Belgium, I would be interested in knowing who is the doctor who has prescibed you low dose naltrexone.

As for De Meirleir, Johan, you are the first patient who openly publishes the real problems with De Meirleir in English, which are basically ETHICAL. You can find a lot of info written by his patients in Dutch in forums. He does not believe in medical ethics, but he knows how to avoid getting into troubles with the law.

I am patient of KDM for nine years now. He is more of a researcher than a doctor. He is one of the ten most savy doctors in CFS in the World. In recent years he is very closed to Cheney, with whom he talks a lot.

My biggest problem with De Meirleir is that as a scientist, he does not put the patient in the centre of his decisions. In reality, he is a researcher and not a medical doctor. He is a franc-mason, and as such he believes that it is justified to harm a patient if the discovery will help cure the sickness (and give him more glory as a researcher). I have seen him screwing a lot of patients already. I believe that the mean never justifies the goals and that harming a patient without informed consent is immoral. He lies a lot to the patients or ust simply hide them the truth.

After many years, I have learnt to deal with him and learnt to negotiate his treatments while keeping him as one of my main CFS doctors. I have developed a sense of when he is experimenting without my consent or he is trying to obtain from me a non-informed consent based in lies, or when he is really treating a problem that I have. Beware that if you constantly refuse his experiments he also looses all interest in you. In fact, he has no interest in you at all but on the experiement he is doing.

Because his goal is not to cure you but to experiment with you, he will never provide you with biological instruments that can help you to recover if they affect the data of the experimentation. He knows very well how the now standard supplements and medicines for CFS (Nexavir, B12, glutation, omega 3, probiotics, etc.) works and affect your body and that they are very usefull. The improvement that patients have at the begining of his treatment is related to all these proven and classic supplements and medicines for CFS that he gives as standard treatment after the second visit. But you can also obtain all those supplements from any other doctor that is knowlegeable to the biological approach to CFS. Because he knows these supplements well, he knows that will not affect the data. I have seen him getting mad because I had not told him that I was taking supplements or medicines and they have affected the results of the test. Basically, he could not use the data. The expensive laboratory test are most of the times focused in data for his research and not in curing, but they are paid by the patients. On the other hand, he receives grants from goverments (Norwegian, Flemish, European Commission, etc.) and from private donations for research. Even his premises are in a Flemish research pole for which he is allowed to pay a low rent. Therefore, he is always under huge pressure to publish and justify the money invested. He is also a person who has developed a complex of prosecuted victims against his colleagues. Many doctors defending the psicological approach (specially in the KUV, but also colleagues at the VUB) have laught unjustifiably a lot about him. He is obseded with being able to prove them wrong. He is very intelligent and hard working (he works even in weekends at RedLabs) and I hope that at least he will be vindicated one day.

He is very good for treating infections. He is also a good internist and immunologist. He is just OK, when it comes to nutritional medicine. He has launched his own brand of supplements (Protea) to the disgust of Nutrisan (from whom he used to obtain the supplements), but out of the typical supplements for CFS, he knows nothing about reading, testing and treating for fuctional medicine. There are much better doctors to treat your nutritional defiencies and genetic problems affecting CFS than him. He does not treat blockages in the metabolism or genes affecting the patient’s detox capacity, the methylation cycle, or aminoacids and enzymes that are missing, etc. Unfortunately, his knowledge of hormones is really bad and old fashion. This is a problem because we all have problems with the HPA axis. In fact, he does not balance the hormones of the patiens. This is an example of the CFS sickness having been kidnaped first by the psiquiatrists and now by the immunologists. They don’t care about the hormonal problems in CFS yet.

Let me tell you that you can find other CFS doctors in Belgium that follow the biological approach to CFS. Moreover, you can even find doctors that know very well the hormonal, nutritional and genetic imbalances of CFS and will help you balance the hormones of the HPA axis. You can also find psiquiatrists and neurologist (yes there are) that follow the biological approach and use psiquiatrists tools (like cardiac coherence, anti-stress, etc.) and that believe that CFS is not a psiquiatrist disease. Just search in the web, they are not in the CFS Reference Centres of course.

My conclusion is that one doctor, De Meirleir, is not enought, and be carefull with his expensive experiments (expensive for your pocket and for your health). I also was forced by my wife to accept one of his experiments at the begining. Now she has realised how inocent she was thinking that he was trying to cured me at that time.

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Johan August 22, 2011 at 3:40 pm

@Skopar,

The problem with De Meirleir is not only ethical, but also scientific. He is into the habit of announcing promising results and soon to be published papers, never to be heard of again. Remember his neurotoxic metabolite test? He announced results and a soon to be published paper … 2 years ago. If you would keep track of all the things he promises and never delivers, it would be quite a list by now. From the past year and a half alone, I seem to remember 5 announcements of soon to be published papers, which haven’t appeared yet to my knowledge (all related to XMRV). Medically unethical, bad communication (written information in his reports and treatment plans can be seriously different from the verbal information given during consult) and bad science, that is why I left. And the fact that I kept getting worse too. I think he is bad news.

You may mail me the list with doctors, psychiatrists and neurologists who treat ME/CFS via the contact form on my site (you may do so in Dutch or in English).

Have you made serious improvements in those 8 years with De Meirleir? Otherwise I do not understand why you keep on going.

For your information: De Meirleir does not like LDN.

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Els September 19, 2011 at 3:17 pm

Johan, if Skopar was so kind as to provide you with his list of doctors, could you perhaps email that list to me?
I’m very interested because I’m really thinking of seeing other doctors again…
thanx!

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Marlène August 22, 2011 at 10:56 am

Skopar, that is probably the best analysis of DML I’ve read so far. Your words represent my thoughts.

LDN was prescribed by my family doctor after I gave him all the information.
You can find it on my blog http://opstaanmetmecvs.blogspot.com
If you like a good follow-up, you should get in touch with http://www.de-poort.be. They are quite knowledgeable and probably have a list of doctors as well.

All the best,

Marlène

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Els August 22, 2011 at 1:40 pm

If only we could mix bits and peaces of the biomedical doctors in Belgium together and make them into ONE who looks at the whole picture …

As the situation is right now we “need” to go doctorshopping and yes, like Marlène said earlier, see a “team” of doctors. That’s the best way to go about it, I agree.
But like Johan I’m suffering from “doctor fatigue” too.

I spent the first 6 yrs of being ill seeing every doctor who knew “anything” about ME/CFS but then I got soooo fed up with it all in 2007, that I stopped seeing anyone until 2009. I went back to KDM and wanted to stick to one doctor this time.

But now … still being “doctor fatigued” I realize I’ll have to go and see other doctors again to check some other important issues related to ME.
Like my dizzyness that has gotten worse, and my hormones that need looking into urgently, … But I can’t find the strength right now.

We need one of a few real diagnostic + treatment centers where immunology, neurology, endocrinology, virology … are combined. That’s what we really need.

ps: Marlène: thanx for the LDN info on your blog! LDN has been on my “list” for so long. When I get my fighting spirit back I’m going to give the info to my GP and ask him if he’s willing to give it a try.

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Johan August 22, 2011 at 4:11 pm

@Els,

Yes, it looks like every doctor has a different treatment plan. Back to the 19th century. Maybe each of them once found something that worked for a subset of patients without realizing they were working with a subset.
Actually, we already have real diagnostic and treatment centers where immunology, neurology, endocrinology, virology, … are combined. They are called hospitals, but alas ME(/CFS) is not on the menu yet.

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Els August 22, 2011 at 6:45 pm

sooo true! Hospitals! Why didn’t I think of that? LOL !

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avreed September 4, 2011 at 11:01 pm

Interesting that Skopar said De Meirleir was very close to Cheney and spoke with him a lot. I was briefly a patient of Cheney’s in 2006 and found him to be exactly the same, ethically detached from his patients, in that it’s all about his experiments and data collecting to back up his research, which he is very secretive and evasive about. Cheney never even looked at my large file of tests already done; immunology panels, viral titers, GI tests, hormone panels etc and instead had me take $10,000.00 worth of basically cadio exams over a 2 day period and then sent me off with the exact protocol he gives every patient, despite their various disorders. This consisted of IM injections of Mag sulfate (which I told him I could not tolerate due to sulfate intolerance from GI pathogens – De Meirleir at least got that right), IM B12 injections and Nexavir topical gel. He agreed to have the pharmacy send me Mag Chloride instead of sulfate and when I returned home I started the protocol. The shots of magnesium were to be given 2 times and day and by the second one I started feeling very weak and disconnected from reality. By the third day I called his office to say I was having a very bad reaction to the shots but he refused to speak to me on the phone even for 5 minutes. He had no nurse or other office personnel other than a secretary so she was useless for medical advice. The message I received later was to continue the shots despite my reaction. By day 5 and the last shot I took, I came very close to stopping my heart and also found out that the substance in the injection bottle was in fact Mag sulfate and not chloride as promised. It turned out I had induced myasthenia gravis from an overdose of magnesium as well as severe GI disturbance from the sulfate. Labs confirmed very high magnesium levels and dangerously low calcium. It took a year and a half before I could even walk around the block again and my GI issues have never cleared up. Now some years later, after an overdose of steroids from an endocrinologist due to low progesterone and cortisol, I have severe dybiosis with a plethora of infections, my immune system is nonexistent (very low IgGs), I have gone into menopause and have developed porphyria so my liver is shot. All of this started with Cheney, who by the way never spoke to me again despite my pleading and incredibly large amount of money I had given him only 2 weeks beforehand. He just took my money and hung me out to dry, almost killing me in the process. I considered for a long time whether or not to report him to the state medical board but at the time I was so sick that I didn’t think I could handle it. As it is, every time time I see his name I feel rebound anger and indignation that this man is still practicing medicine. Cheney had a heart transplant sometime around 2000-2003 and it does not take a psychiatrist to see the trajectory from his early research on pathogenic causes for CFS to CFS being all about cardiac dysfunction. He is a very paranoid and secretive man, unwilling to share his research or even discuss it in any detail, partly I think because it is entirely bogus. He totally abandoned continuing research into infectious causes for CFS despite many if not most patients having lab values for multiple pathogens. He just ignores it with the one exception of giving everyone Nexavir for viral infections, which may or may not be the overriding causative agent in any one person. My take on this now for myself is that if I can clear up the gut, the liver and detox systems will begin to correct themselves along with targeted nutritional therapy to support these processes and balance hormones, immunity will improve dramatically. I have been able to do this once before but now have a much more daunting path in front of me. I am very grateful for these posts as I was considering traveling to Brussels from the States if I could get an appointment with De Meirleir. The feedback here has saved me untold financial and energy expenditure which I no longer have. Thanks to all of you who contributed to this blog. Wishing everyone a road back to health and continued improvement in well being. I think we are all pioneers and a very brave lot. Cheers to all.

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Willow September 4, 2011 at 11:50 pm

doctors who will test for and treat specific pathogens include Jose Montoya, A Martin Lerner, Andreas Kogelnik, and John Chia. A doctor who will test and treat immune function is Nancy Klimas.
best wishes,
Willow

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Willow September 4, 2011 at 11:56 pm

I have little to no personal experience with any of these. I just mentioned them because the previous post mentioned a problem with a doctor not paying attention to specific infections or the immune state in general. A second read reminds me that avreed is pursuing immune function indirectly, and my previous post might not be what is wanted.
cheers!
willow

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avreed September 5, 2011 at 12:50 am

@ Willow. Thank you very much for the doctor reference. Much appreciated and I will check them out. I have heard of Lerner and Klimas but not the others. I am in the process of choosing yet another doctor so these may be helpful. I actually was a patient of Klimas in 1996, the relatively early days of CFS research. It’s another story of exceedingly expensive immune panels, also in the thousands, and a couple of hours at University of Miami Immunology Department. I saw Klimas for about 15 minutes of that time and was told I would be given a call when the results came in. At that time, her lab rarely answered the phone and getting any kind of results took weeks to months of calling over and over again. I was eventually told I had either CFS or chronic mononucleosis, they could not be sure which. I asked if there was any treatment and was told there was not and that was the end of it. They said there was nothing more they could do and I had the definite impression that my labs only served to feather the research nest. I realize it was a long time ago and a lot more is known now but when I called her new lab and asked some questions about how they treat, not just test, they couldn’t give me any real examples of the methods and protocols they use. I decided not to go down that road again as it did not prove beneficial initially and seemed vague at best when I revisited them. They did clearly state that they dealt with immunology only and if there were other issues, infectious disease, liver, heart, endocrine etc., I would need other doctors to cover all of those things. Well, we all know how that goes, a revolving door of specialists who don’t understand the picture as a whole and we get dismissed and belittled out of their practices. There does now seem to more physicians who are comprehensive in their care and understand the many vagaries and individual aspects of CFS. Sorting the wheat from the chaff is the key and where I am right now. Just having a possible doctor data base is the first step so I thank you again for your input. All the best to you!

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Willow September 5, 2011 at 2:05 am

unfortunately, none of the infectious disease doctors does comprehensive work (e.g. they cannot help you with orthostatic intolerance, sleep medicines, etc.).

Klimas’ clinic (nowadays) is the closest to comprehensive treatment, from what I hear on Phoenix Rising and from her videos posted at http://www.cfsknowledgecenter.com/expert-assistance.php . I’m sorry you had a bad experience in the early days. Hopefully it’s better now, although I think her private clinic is still expensive (the university-funded clinic is supposed to be less expensive, but there is a long wait list); I think I heard she tries to price things at what an insurance would pay, but it’s still a lot of tests and there are either copays or deductibles and coinsurance, or some people don’t have insurance (or have an HMO or whatever that wouldn’t cover her clinic).

Whittemore Peterson Institute is putting together a clinic which will one day be multi-specialty (and wants to take patients regardless of ability to pay, but they obviously need funding). So far I think they have a primary care doctor and an endocrinologist. (note: their clinic side is separate from their research side except for the data repository [by going to clinic here your case and chart notes would anonymously be available for research, although I imagine this is on an informed consent, opt-in or opt-out, basis], and the clinic does not appear to be focused solely/primarily on retroviruses)

I have a vague idea that Dan Peterson does a bit more than the average ME doctor, but I expect it’s expensive again, and he requires a referral from a primary care doctor, saying he cannot act as such (I suppose he has too many patients, and his wait list is extremely long). There is also Derek Enlander; you can see him on Lewellyn King’s video series. http://www.prohealth.com/library/showarticle.cfm?libid=16320

If you go on Phoenix Rising and ask, you can get recommendations (maybe find someone close to you) and usually find someone who has been to the doctor you are interested in.

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Willow September 5, 2011 at 2:15 am

@avreed sorry, I’m having reading comprehension issues today. I see it was currently that you contacted Klimas’ clinic when they said immunology only. Not sure why I thought they were a bit more expansive. Good to know. :) Thanks. Odd that the people who answer the phone can’t give clearer reports.
best,
Willowj

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avreed September 5, 2011 at 2:52 am

Great information. I had looked at Peterson and was interested but I was under the impression that the clinic was research only. Thanks for clearing that up. I will give them a call to see how they currently operate and what it might take to become a patient. I vaguely remember coming across Enlander – can’t remember where but will look him up again. Phoenix Rising is a great forum and data base. I have done a doctor search for my area and have probably seen them all (I’m a persistent but getting weary). I live in Florida which is full of fringe oddball doctors, a lot of them into energy medicine and have foregone real science, but Klimas is only down the road a bit in Miami so that was the first call I made after this horrific relapse. I actually called a couple of times thinking I might get some more concrete answers but they were not very forthcoming. I will try again as that would at least spare me the expense of traveling and living in hotels which I have done a lot of in the past – Mayo MN for a month (found out only after I was there they had NO immunologist on staff), Cleveland Clinic FL, Asheville, NC (Cheney), Santa Ana, CA (Goldstein), Dallas, TX (Environmental Health Center – very bizarre experience there), NYC, NY (Galland) and other locales around the country over the years. I was excited about De Meirleir because he finally had touched on the serious GI issues of bacteria emitting H2S that was poisoning people which is exactly what I had found out myself when I took the urine test from his lab but no one else seemed to be on to it. Now older, with more profound and diverse issues, especially hormonally, the need for comprehensive care is much greater. I also had some private dialogues with Rich Van K about methylation, sulfation etc. and he too said it was gut that had to be fixed before I could make any progress due to so many intolerances. The tricky thing now is the difficulty taking meds due to liver problems and now kidney problems due to adrenal collapse. It’s a vicious circle but I am dogged in my belief that this can be fixed. I simply will not give up no matter how grim it sometimes appears. Some days are better than others but at the very least I am getting one hell of an education and it really is fascinating in so many ways. I just wish I wasn’t the object of my own research. You have been a treasure trove of information on doctors and I really appreciate the time and effort you have made to write it all down. I have my homework to do and will let you know how I make out in the next week. Thanks ever so much. With hopes that you also find some relief and good care. Happy Labor Day. Cheers.

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Johan September 9, 2011 at 8:09 pm

@avreed and @Willow
Interesting discussion you two had. I think a lot of patients are in your/our situation. Wondering (desperately) which doctor to turn to next. I do not know and that is the reason why I am not seeing one or looking for one, at least no ME/CFS doctors. What they apparently all have in common are very expensive tests and treatments which are in facts experiments. For the moment I will leave my money in the bank.

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avreed September 10, 2011 at 4:53 pm

@Johan & Willow. After researching the above named doctors and upon much reflection, I too have decided to hold off on engaging yet another physician, at least for the moment. I will keep my present doctor that I now see sporadically, for the occasional lab test and Rx if necessary but do not expect that he will be able to do much more. I have seen some of the supposed best over the years and have practically earned a biochemistry PhD in the process, so perhaps I should trust all that I have learned and not be afraid to put that to use. The doctors serve as a psychological safety net as much as anything else. In my case I always think I need someone else to tell me what I should do next. Not that I haven’t gained a tremendous amount of insight from various MDs but no one really knows me the way I know my body. Also, I have tested positive in regular labs for many infectious disease organisms – pathogenic bacteria, parasites, fungus and viruses as well as a severe IgG deficiency. Hormonal deficiencies also loom large. I just don’t see how more tests will be of any benefit as I already have the kitchen sink of diagnoses to deal with. Treatment is necessary and specific for most of these things but has also been difficult because I can’t tolerate many meds due to liver (porphyria, detox) & kidney (heavy metals, adrenal) problems. I have started to study botany and medicinal herbs in earnest and try to keep abreast of new research in that field. But I also think I need to get off the hamster wheel of doctor searching as it is only further taxing my energy and is not perhaps the most productive way to spend my time. I’m just too worn out, physically, emotionally and financially, to keep up that quest. As long as I have one GP and immunologist who are willing to work with me, even if they are not specifically ME/CFS doctors, I think I ill leave it at that. Not least though, I do thank everyone here for their invaluable comments, informed references, anecdotal experiences and tremendous support :)

When thinking some of the doctors I have seen and their treatment of me, I am reminded of a few lines in a Tennyson poem, The Love Song of J. Alfred Prufrock:

…And I have known the eyes already, known them all—
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin…

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Willow September 10, 2011 at 8:28 pm

Johan and avreed,

This is an interesting problem and I wish the best to you both (and the readers). I have come at “the doctor problem” the opposite of most people.

I was without any diagnosis and, for the most part, without any medical care, for 9 years. I did see an ND for a while; we tried some anti-Candida measures which did nothing, some detox stuff which helped MCS, and so forth. I stopped going after a while because I felt the ND’s had brought me as far as they could and it was expensive.

The MD’s mostly lost interest in me pretty quickly when they couldn’t diagnose me with a major expected disease, and it broke my heart the way I was treated, talked to, and talked about “behind my back” in my chart notes, and I was terribly discouraged having no answers at all, no diagnosis, no nothing. I did eventually have a couple of nice MD’s, but they didn’t know what was wrong with me and, even after I was diagnosed, made little effort to figure things out, although they did try very hard with the knowledge they had. I still had essentially no medical interventions until about 1-1.5 years ago (12 years into my disease saga).

Seeing a CFS specialist was really good for me because I finally got a tested for infections related to ME, and that gives me something concrete to know. He also diagnosed my tachycardia which everyone else had been ignoring for the past 12 years, and it’s now treated.

Most of my useful treatments, though, are officially for other things (migraine medicine, pain and anti-inflammatory medicine officially for fibro, anti-inflammatory medicine for deep lung inflammation–but on that one the doc might be thinking of ME), but they help the ME also. A year or so ago before I had these, I was doing very badly and in a downward spiral. Now I am still not especially functional, but much less miserable and less brain-fogged and my condition is more stable. And I can breathe, which is kind of important. :)

But that is my story. It is different from other people’s stories.

Cheers!

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avreed September 10, 2011 at 9:43 pm

@Willow. Thank you so much for sharing your experience and I am very, very pleased that you finally got some measure of caring and intelligent help. Even if it isn’t all that it could be at the moment, there are new things coming along all the time that might further your improvement. For the first 10 years of my problems, I had a similar story to yours; revolving specialists, no answers and feeling helpless, dismissed and scared. I had literally been asked to leave doctor’s offices when they could not help me or left on my own when they became abusive and condescending. I lost many of my friends and a marriage to a man I was deeply in love with, which I still have lingering sadness over. I was perhaps lucky that I got a diagnosis of ME/CFS earlier than some but I didn’t really know what to do with that information at the time. Seeing Klimas was one of my first stops but that turned out to be useless in terms of treatment. What wasn’t done then and has only been done in the last 2 years are all the GI studies and genetic panels which clearly show my pathogen load and inherent DNA weaknesses. So perhaps I am lucky again despite my current misery, in that I have very tangible problems to address. I don’t believe any of these things would have been addressed unless I had become a my own ardent health advocate, a relentless researcher and made use of just about every new functional lab test available. This came at a big price though, both emotionally and financially, and I have lost a lot of trust in the ethics of the AMA and in the holistic arena as well. I did need doctors help with all of this and some were better than others, and several who were compassionate, but it has been like piecing together a biological jigsaw puzzle and has taken a very long time. My trials aren’t over, they are just beginning a different phase, one that I hope will bring some healing and functionality.
I truly wish you continuing success and steady improvement in your health. We have all been traumatized and neglected enough. None of us deserve anything but kindness, love and compassion which I am sending “virtually” to you everyone on this site :)

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