Does XMRV changes the way you think about De Meirleir's approach to ME/CFS?

[Berthe]

Hi there,

I'm new here on the forum. I have been diagnosed nearly ten years ago with CFS/Fibro. Until last year I was convinced that my CFS was triggered by some emotional/physical trauma and a weak immuunsystem. I actually started to study cognitive neuroscience at the university to learn more about the mechanism.
The discovery of the xmrv virus made the hypothesis complete. One could carry the virus (for an indefinable time) and at the moment you're immuunsystem gets real weak for whatever reason the xmrv virus becomes activated.

I try to see how the leaky gut etc... comes into picture. Is it a symptom of the CFS and therefor plays a subordinate part? But is it possible to fix this symptom without taking antiretrovirals (perhaps the cause of the symptom)?

I have an appointment with dr. De Meirleir, but I have to admit that I'm sceptic about his approach to the bowl problems etc... On the other hand I would like to know more about Ampligen and I'm willing to take it when I test positive for xmrv.

Can anybody tell me what they think of Dr. Meirleir's approach now we know that xmrv is probably the villain of the piece?

Love,

Berthe

 

[Francelle]

I would hazard a guess that IF XMRV/MLV’s are found to be the cause of M.E. then many of these symptoms, like leaky gut, are likely to be the result of such a retroviral infection.

Multiple symptoms occur in other conditions caused by retrovirus, so why not this one?

 

[aruschima]

Hi

I am a patient of KDM and i jus saw him on the 15 . August.

He is the only one in the moment (R.E.D.lab Brussels) who is testing XMRV and MVL-related viruses in Europe and he also started some people already on retro viral. According to him he had already successes , but would not reveal which retro virals he used. I guess he will reveal more at the conference, which some posted here on the board about.



That is all i can tell you.

 

[Berthe]

Hi Francelle,

My point is; 'would it be wise to stretch oneself in taking all kinds of medications to undo the bobo in regard to the symptoms and not tackle the virus itself?'
When one reads all the posts about the succesrate of Dr. De Meirleir over the last years, it is not surprising that people didn't get well or significantly better (sometimes even worse) during or after his treatment. I know that is was a long shot, even for him. But with the newest insights, wouldn't it be wiser to concentrate on the antiretroviral aspect of the treatment and secondary on the damage done by the virus?
Of course I don't know if that damage is reversable!

Thanx Francelle, for your quick response.
I'm from Belgium by the way.

Love,
Berthe

 

[filfla4]

The discovery of the xmrv virus made the hypothesis complete. One could carry the virus (for an indefinable time) and at the moment you're immuunsystem gets real weak for whatever reason the xmrv virus becomes activated.

I also have an appointment with Prof De Meirlier (November). I made this appointment in early summer, before the Lo/Alter paper was published. I am not expecting a cure but rather an improvement in my quality of life, at this stage.

Might it be that the virus entered our system somehow and remained latent....we develop gut problems due to stress thus lowering our immune system more and more.....and then our inability to fight off infections, one strong infection triggers off the virus? Does this make sense?

No more speculation from me! 24hrs to go!!!

 

[Berthe]

Hi Aruschima,

Thank you very much for your answer.
I'm trying to get a good idea of what to do or don't in regard to treatments offered by dr. De Meirleir before I go to see him. I hope you are satisfied with his approach.
There is also a forum in Dutch about CFS/ME and there I've read a lot of different reactions to dr. De Meirleir's approach from his patints. He is indeed giving various anti-retrovirals to his patints and Ampligen was one of these anti-retrovirals. Because it is experimental the insurrance doesn't cover a lot of these medications and one has to pay for it himself.

I guess you are right and we have to wait a bit longer to see what the conference will bring.

Love,
Berthe

 

[Berthe]

Hi Filfla4,

Great that you also have an appointment with dr. De Meirleir. As I can see you are from Malta, that is not exactly around the corner if you come to Brussels.
Your hypothesis also makes sense. But to be honest, I'm betting more money on mine
I'm not a specialist. I graduated as a philosopher of mind last April with a minor in cognitive neuroscience. Philosophers tend to think a lot and come up with all sorts of hypothesises. If you are right and the problems with the gut are a trigger for the weakning of the immuunsystem and not the other way around, there need to be some work done.
I'm also seeing a homeopath next saturday to tackle the gutproblems.

I wish you all the best and we keep in touch.

Love,
Berthe

 

[filfla4]

There is also a forum in Dutch about CFS/ME and there I've read a lot of different reactions to dr. De Meirleir's approach from his patints.

Thanks Berthe. Could you give me the link for this forum? Although I don't speak dutch, perhaps I could use google translate to see what is being said.

Thanks again.

 

[Berthe]

Dear Fifla4,

I'm not on my computer the entire day. CFS:tongue:
But if I'm here, I will gladly help you translate some difficulties.

http://www.mecvs.net/

Have to go now. The couch needs me.

Love,
Berthe

 

[filfla4]

Thanks! Much appreciated!

 

[ukxmrv]

Berthe,

I'm in the UK and contemplating a visit to see Dr DM so your question was timely. I am XMRV+ and would be interested in the new treatments he will be starting for the virus in particular. I'm following some of his other patients and trying to pick up clues.

In my own case I had no gut problem when I first became ill with an acute viral onset. My gut problems only started when I took drugs to try and control some of the infections and symptoms. One of the reasons I had not seen Dr DM before was that he seemed to offer anything new to me. I've tried many different treatments and protocols over the decades.

With XMRV everything changes as I understand he is working with patients to try and tackle the virus. I've not got any more news other than what they tell me. It's early days.

XMRV+

 

[Francelle]

Berthe, I'm inclined to agree that the other M.E. symptoms may respond better once the retroviral load is more controlled, rather than dealing with the symptoms in isolation.

Having said that though, I have, for instance, Gastroparesis (severely delayed gastric & GI motility). This doesnt mean that I cant get some relief by taking prokinetic medications and eating a liquid diet. What it does mean though, as far as a longer term solution, is that my Gastroparesis may not have a chance to abate until I am on retrovirals, if that is appropriate for me. Ditto all my other symptoms!

Up until the recent research on a possible retroviral connection with M.E., all that doctors had to offer was to alleviate presenting symptoms. This however did nothing to help the underlying condition of M.E. nor the other multi faceted symptoms.

Did you have gut problems before M.E. or did they only occur after the onset of M.E. or is leaky gut a silent symptom?

 

[Berthe]

Hi Francelle,

I want to add that I don't perceive any problems with my gut or bowl. The symptoms I have focuss on exhaustion, fever, pain in muscles en joints and cognitive problems with short term memory, brain-fogs etc... I'm not aware of specific problems in my bowl or gut, but I guess that there could be problems without me actually knowing.
Because so many patients of dr. De Meirleir have been diagnosed with leaky gut, I presummed that he was looking specifically in that area (leaky gut as a cause for the other symptoms described above.)

Love,
Berthe

 

[Berthe]

Hi ukxmrv,

Thank you for replying.
For me, the onset of M.E. happened after I got a stroke. It had nothing to do with a gut problem. My immuunsystem always had been shaky and just crashed at the moment of the stroke. (Where possibly the xmrv virus got activated).
Because I went to prof. Houdenhove (a psychiatrist) for CBT, I never took any medication to control the infections and symptoms. I just learned to live with it. And of course I thought for years that I was making things up, going insane, becoming demented etc... I'm only on anti-depressants, sleepmedication and I use painkillers on a regular basis. One could say I spared my gut and bowls.

Therefor I had the same reservation as you to go to see dr. De Meirleir. The virus changed the purpose of the visit.
I'm not yet diagnosed with xmrv. I'm really curious how you got diagnosed so quickly in the UK? Great for you, by the way. Can you tell me a bit about it?

Love,
Berthe

 

[aruschima]

Hi Bertie

First my insurance paid everything, so i guess it depends what kind of insurance you have. I send them a lot of information about Dr. Meirleier and made a point, especially with the improvement of my son's bowel= digestive problems. He was twice in the emergency hospital for that and countless docs did not know what he had. From very small on he got heavy pain before he went to the toilet. KDM tested both of us for fructose mal-absorption and we tested positive. As soon as he stopped fructose sugar his problems were gone and never came back.
I did not agree with many of KDM treatment options, especially antibiotics. But this was also not the reason i went to see him ( I had adverse reaction to ABX treatments and researched this topic extensively. About 30% of ME/CFS patients have adverse reaction and some deteriorated, like me, or developed autoimmune diseases. But i do not want to go in to detail here about that; would be to extensive topic.)
But KDM is a good diagnostician, and has seen thousand of ME/CFS patients. I needed to confirm my diagnosis and especially get my son diagnosed.
If it comes to treatment, i think, it was up until now always a matter of treating symptoms rather then the source.
With the recent discovery i think this has changed and also Dr. Meirleier will adjust his treatment accordingly. I think it is up to each patient to inform him/herself and make an informed decision which way to go by him/her self.

Aruschima

 

[ukxmrv]

Berthe,

Someone in the UK set up a private testing arrangement with a local London lab and they send bloods to VIP dx. This was how my XMRV results came about.

The drugs that have badly effected on my stomach include antidepressants and painkillers.... We are all different though and people react in different ways to drugs.

 

[Berthe]

Hi ukxmrv,

Thanx. You are so right about the fact that we all are different. I know painkillers can upset your stomach therefor I nearly allways use suppository. I actually had no idea that antidepressants could effect your stomach so badly. This is a real eye-opener to me.

I'm so glad that you found the private testing arrangement in London. No you have something to look forward to. The worst case scenario would be that they wouldn't find the virus in my blood. I've set up my hopes up high for the first time in ten years about the promising possibility that there is a chance of improvement. I've never done this before. Maybe you recognise this strange kind of hope?
Are you also going to make an appointment with dr. De Meirleir?

Love,
Berthe

 

[Berthe]

Hi Aruschima,

It's great that your insurance refund the costs you make. I'm curious about mine. Anyway my health is to precious to pass this opportunity. Did dr. De Meirleir test you and your son for xmrv?
I ask this because I have two sons and the possibility of hereditary. I have one son with Asperger, a mild form of autism and the other son with bowelproblems that have lead us to the hospital as well.

Love,
Berthe

 

[Athene]

I just wanted to say that I have been a Meirleir patient for a year, and I am one of the people who got a lot worse on his treatment. He helped my son get a lot better. I think he focuses a lot on bacteria in the gut but doesn't properly address other things like yeasts, allergies/intolerances. I think this is why my son got better and I got worse, because he didn't have candida but I did.

Also, he tested me for mycoplasma, borrelia and chlamydia but the results were negative because they were done by an ordinary local lab, not by a lab specialising in diagnosing these important co-infections in immunosuppressed patients (you cannot just do an ELISA test for borrelia and trust a negative result, for example, if the patient has apready been ill for many years). I have since tested positive for all these infections, which need treating with far stronger and more persistent treatment than he uses.

Meirleir prescribes antibiotics in a version of the Marshall protocol. You take them for 8 days at the start of every month and then probiotics the rest of the month. If you have the infections I listed above, this makes them become more antibiotic resistant, so you create far more serious problems eventually eradicating them.

One of my doctors at home looked at the treatment plan and said "This reminds me of Hitler. This month we shoot the Jews, next month the gypsies, then after that the Poles...it's random and fairly desultory. There's no rocket science here"

I think Meirleir is quite experimental and doesn't mind prescribing things that are unproven but which he thinks can help. He is giving antiretrovirals to his XMRV positive patients at the moment and clearly this is still highly experimental therapy at this stage. His treatments are EXTREMELY expensive.

In your place I think I would wait for more information on XMRV and save my money until the right drug comes along. Meanwhile, Meirler really does help some people a lot. I have one friend who swears he is a miracle worker.

 

[Berthe]

Hi Athena,

I would like to thank you for your informative reply. I agree on almost everything you write. If one speaks Dutch and therefor is able to read the stories of his patients, one can relate to your story as well. It's been told often.
I do have an appointment with dr. De Meirleir and I think that it's crucial to know what I want and don't want to happen to my body in advance. As a long term patint I am, just like you, very aware of the consequences of his experimental approach. We are autodidacts!

I just heard Andrea Whittemore telling in an interview that she was back on Ampligen and that it seemed to work for her (the second time). She was also taking homeopathic medication. I thought to give this a try awaiting coming medication specific for people with the virus. I don't want to waste more precious years.

Love,
Berthe