Fw: [] Dr. De MeirLeir to Speak on Acclydine

[Guest guest]

I broke my left hand and I am typing with one hand so I'll just re-send what I wrote to cfsexperimental a few years ago

Nelly

Re: [] Dr. De MeirLeir to Speak on Acclydine

So KdM has found another thing to flog! Ampligen didn't come good so I guessnow it's Acclydine!I am one of the 8000 people "seen" by KdM and I can tell you he was worsethan uselessNelly

[Guest guest]

Re: [] Dr. De MeirLeir to Speak on Acclydine

>I think you exagerate, I work with KDM and I know his pro's and con's. ButI>know for certain that he is important for a lot of people here in Belgium,>the Nederlands and so on.You're quite right people need gurus, and with K.DeMeirleir they've got one,so I guess he IS important to them!>I'm sorry it did not work for you, I guess you had a communicationproblem.Why are you guessing we had a "communication problem"?I saw him twice as a patient and I told my story to his assistant, then Iwent into his office and when I said I had arrhythmia he just took out hispad and wrote me a script for verapamil (calcium channel blocker) whichnearly killed me, as my BP was already dangerously low and it made it dropfurther. It also made the arrhythmia much worse!! I had VENTRICULAR ectopicbeats and verapamil should NOT have been prescribed, I had bradycardia aswell as tachycardia because of the Lyme and when the verapamil slowed myheart beat further I could easily have died during the night. "Communicationproblem", indeed!!That's ALL he did for me, he did not investigate what could be CAUSING myheart sxs at all, just wrote the silly script.I found out a few months later that I have late, chronic Lyme + Babesia +mycoplasma (and probably other infections). Long term abx have got rid ofthe arrhythmia. No idea what would've happened if I had kept on taking theverapamil. At the time he was all on about viral etiologies and Ampligen, so on mysecond visit (I was coming from Paris just to see him) all he did was get anurse to draw heaps and heaps of blood for testing various viruses and doingthe famous RNAseL. I got the results of that a few weeks later and it washighly abnormal. I never got any other results. Several other French peopleI know were treated in a similar fashion.First I was told I could go on Ampligen, then when I rang him up to organisethat, he was very curt and said they had changed their minds and as I didn'tlive in Belgium it wasn't possible. I am now very glad I didn't take it.I also told him I was concerned that my heart thing (and multiple othersymptoms) could be bacterial in nature (Mycoplasma, Rickettsia etc) HESCREAMED at me over the phone that WE ARE INTERESTED IN VIRAL THINGS thatTHE RNASEL INDICATES A DYSREGULATION OF AN ANTIVIRAL PATHWAY SO IT ISRIDICULOUS TO SPEAK OF BACTERIAL INFECTIONS.That was in 99, don't you think it is rather funny? I do, when I now see howhe presents himself as the champion of mycoplasmal infections in CFS!!!A bit weak if you ask me!Nelly

[Guest guest]

Nelly, your experience is very strange. Makes me wonder what was

really going on with him, in particular the mycoplasma issue at that

time in history. I think he has been attacked on this very issue and

there may be some reason he was not admitting to this at the time

when he got so angry with you. He may have been very frightened. You

know he did some writing about a plane crash in the Netherlands which

may have been carrying bioweapons that made a lot of people in the

nearby town sick. I think your unusual experience may fit into this

situation and he was under attack for dealing with this at all.

Also, back then he may have had no clue to look more closely at heart

symptoms. I am not excusing his poor treatment of you - well, maybe I

am - but the whole thing really makes one wonder...

a Carnes

>

>

> Re: [] Dr. De MeirLeir to Speak on

Acclydine

>

>

> >I think you exagerate, I work with KDM and I know his pro's and

con's. But

> I

> >know for certain that he is important for a lot of people here in

Belgium,

> >the Nederlands and so on.

>

> You're quite right people need gurus, and with K.DeMeirleir they've

got one,

> so I guess he IS important to them!

>

> >I'm sorry it did not work for you, I guess you had a

communicationproblem.

>

> Why are you guessing we had a " communication problem " ?

>

> I saw him twice as a patient and I told my story to his assistant,

then I

> went into his office and when I said I had arrhythmia he just took

out his

> pad and wrote me a script for verapamil (calcium channel blocker)

which

> nearly killed me, as my BP was already dangerously low and it made

it drop

> further. It also made the arrhythmia much worse!! I had VENTRICULAR

ectopic

> beats and verapamil should NOT have been prescribed, I had

bradycardia as

> well as tachycardia because of the Lyme and when the verapamil

slowed my

> heart beat further I could easily have died during the

night. " Communication

> problem " , indeed!!

>

> That's ALL he did for me, he did not investigate what could be

CAUSING my

> heart sxs at all, just wrote the silly script.

>

> I found out a few months later that I have late, chronic Lyme +

Babesia +

> mycoplasma (and probably other infections). Long term abx have got

rid of

> the arrhythmia. No idea what would've happened if I had kept on

taking the

> verapamil.

>

> At the time he was all on about viral etiologies and Ampligen, so

on my

> second visit (I was coming from Paris just to see him) all he did

was get a

> nurse to draw heaps and heaps of blood for testing various viruses

and doing

> the famous RNAseL. I got the results of that a few weeks later and

it was

> highly abnormal. I never got any other results. Several other

French people

> I know were treated in a similar fashion.

>

> First I was told I could go on Ampligen, then when I rang him up to

organise

> that, he was very curt and said they had changed their minds and as

I didn't

> live in Belgium it wasn't possible. I am now very glad I didn't

take it.

>

> I also told him I was concerned that my heart thing (and multiple

other

> symptoms) could be bacterial in nature (Mycoplasma, Rickettsia etc)

HE

> SCREAMED at me over the phone that WE ARE INTERESTED IN VIRAL

THINGS that

> THE RNASEL INDICATES A DYSREGULATION OF AN ANTIVIRAL PATHWAY SO IT

IS

> RIDICULOUS TO SPEAK OF BACTERIAL INFECTIONS.

>

> That was in 99, don't you think it is rather funny? I do, when I

now see how

> he presents himself as the champion of mycoplasmal infections in

CFS!!!

>

> A bit weak if you ask me!

>

> Nelly

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

>