Meirleir Poll

[Hip]

In 30+ years I've many times gotten strikingly better, and strikingly worse, for periods of time, from doing nothing whatsoever. Relapse and remission are literally hallmarks of the illness.

I wonder if your experience is mirrored by all ME/CFS patients? Or are there are certain subsets of patients who do tend to have periods of feeling much better and much worse for no apparent reason; but other subsets who remain more constant in their disease severity?

In the 10 years I have had ME/CFS, the only change in severity has been in the last few years, but I think that is likely due to the treatments I have started in recent years.

 

[Marc_NL]

i wanted to vote moderate but accidentally voted dramatic.

You can still change your vote, just click on "Change Your Vote"

there is another forum in dutch(?) that has a lot more DeMeirleir patients. I have posted there before, using google translate:

http://me-behandling.com/

It's not Dutch but Norwegian.

I read once that getting much better (if possible) takes 1/2 the duration of your illness. At the rate I am going, that sounds about right.

Where did you read this, on this same forum?

 

[Daffodil]

@Marc_NL i used to read it on some Lyme forums

 

[TigerLilea]

Relapse and remission are literally hallmarks of the illness.

Not for me. I've never in the almost 26 years that I've had ME/CFS ever had a remission. Not even one.

 

[TigerLilea]

I read once that getting much better (if possible) takes 1/2 the duration of your illness. At the rate I am going, that sounds about right.

I don't know how anyone can make that claim about ME/CFS considering that medical science doesn't yet know what it is or how to cure it. A person can have an infection and feel lousy for months but after a few days of antibiotics can feel great again.

 

[Izola]

Looking for best treatment
* * *
He himself speaks about a 70% succes rate with his Me/Cfs patients which seems very high to me. . .

IMO "success' rate and "cure" rate are two different things in the ME/cfs world. I haven't heard that KDM claims a 70% success rate. I would conclude that if he did, it would be an improvement rate. Otherwise, we would all be camped at his door if we could forage the money for a plane flight or train ticket and would worry about next month's rent later.

 

[Izola]

Oops. On the 'in depth' monitor, I guess I was barely skimming the surface of this conversation & missed most all your comments in between yours, Mattie, and mine. iz

 

[flybro]

I'm almost sure i've tried this.
Was his the kit that included red stuff in plastic bottle? I know sounds random, but I remem only that bit.

 

[Daffodil]

@TigerLilea sorry i should have made it clear that it was said about Lyme..not CFS

 

[serg1942]

I guess that the 70% might be accurate, if it includes all patients who experience any degree of success. Here if you sum up the moderate and the dramatic improvements, it makes a total of around 55%. You need to take into account that most patients who recover to the point to go back to their normal lives, they are not going to be reading this forum (they will be living instead!!!!), obviously... So the % will also be lower than the reality in my opinion.

Best!
Sergio

 

[Daffodil]

In 30+ years I've many times gotten strikingly better, and strikingly worse, for periods of time, from doing nothing whatsoever. Relapse and remission are literally hallmarks of the illness. If doctors don't follow and test all patients given and not given treatments over a considerable length of time, then to claim anything in terms of success just strikes me as an exaggeration of what is known. Improvements could just be a remission that would have occurred with or without treatment.

I 've never had a remission - just got gradually worse over the 23 yrs I have been ill....so relapse / remission is not a hallmark of the illness

 

[Daffodil]

@frederic83 I have spoken to a patient in person who was completely recovered with KDM but they had been treated early on in their illness. 10 yrs later, they began to relapse and were back for treatment.

there are many on 'lyme' message boards who consider themselves 95 - 99% recovered but it appears that it can be a very long process.

I totally agree with you that doctors/researchers are not cooperating with eachother and it is very tragic

 

[frederic83]

I have spoken to a patient in person who was completely recovered with KDM but they had been treated early on in their illness. 10 yrs later, they began to relapse and were back for treatment.

He had Lyme or another illness?

 

[Justin30]

I have spoken to a patient in person who was completely recovered with KDM but they had been treated early on in their illness. 10 yrs later, they began to relapse and were back for treatment.

I also am cirious as to the degree of their severity and neuro issues as it seems like those with lots neuro issues stay quite sick and dont experience a remission on the balance of scales

 

[Daffodil]

He had Lyme or another illness?

kdm finds lyme in majority of patients

 

[Daffodil]

I also am cirious as to the degree of their severity and neuro issues as it seems like those with lots neuro issues stay quite sick and dont experience a remission on the balance of scales

i agree. i am a severe neuro issue person from the beginning and my progress seems very slow, especially brain-wise. this is the hardest symptom to treat, i think

 

[justy]

I would like an option in the poll for either small improvements or still in early stages of treat,emt/too soon to say.

Whilst I have been a patient for two years, due to MCAS and an inability to tolerate meds and treatments and having a long, complex illness the gains and treatment itself is VERY slow.

For the record one particular treatment that I wasn't able to continue because I can tlive in Brussels gave me a two month remission to about 70% functioning from around 25%. Am now back to around 25-30%.

Another treatment has kept me from being all day in bed to being able to gently potter around the house. Unfortunately I have started having atypical anaphylaxis to this particular treatment so have had to discontinue.

So you can see just how complex treatment can be - I need IV abx and don't know if I will tolerate them or will be more sick while on them. If I don't tolerate them then my next options are limited. -not KDMS fault, simply the nature of my complex illness.

I have never been told any success rates, just told he will do his best for me, and to be fair he hasn't given up on me like other Drs have and keeps on keeping on, as do i.

 

[Daffodil]

@justy which treatment made you 70% better?

 

[justy]

@justy which treatment made you 70% better?

6 weeks of IV myers cocktails with Glutathione- 3 x a week. I cant continue this regime at home as its too expensive.

 

[filfla4]

I started seeing KDM about six years ago. I would say that on the whole I have improved from functioning at around 40% to around 80% but I seem to be stuck there. I can't seem to improve any further. The best feedback I can offer is this: on the positive side, I think that he cured my EBV. I no longer get low-grade fevers and sore throats and swollen glands. This was a hallmark of my illness for over 15yrs. He also diagnosed me with Lyme and I did two rounds of IV abx, followed up with anti-microbials. The Lyme is still defintely present with all the typical symptoms. However the severity depends on my activity levels. Exercise is still very difficult for me and I suffer very much if I am too active/busy. I manage gentle pilates classes and walk some but that's about it. I haven't been around much on Phoenix for reasons other than the fact that I have improved a lot. I have been dealing with a sick son (brain tumor). So if anyone needs any further info, feel free to email me on bibo at onvol.net. Wishing you all the best healing vibes in the world!!