My trip to see Professor De Meirleir (long post)

[MadeleineKM]

I think I have heard about Norwegians getting worse the first time on GG and then getting better, but I have to check again to be sure. Its difficult to know if its safe to continue when you get worse..

 

[justy]

He said its OK to continue but to inject more slowly. As the nurse is just injecting it straight in with a needle sub Q I don't know how this can be done slowly unless I have the right eqpt? the nurse here doesn't know how to show with slow push and butterfly needles...no idea what to do now...

KDM said it was ok to stop for a couple of weeks as we are going to France and then start again when I get home. Just feel nervous about the whole thing and still crappy today. He said is a sensitivity reaction.

Then I had echocardiogram and he says I have Mitral Valve Prolapse. I have proper apt with him on Monday so will discuss all this more I hope...today was a quick one

My coagulant blood test was fine so I can have the last 3 infusions of athletics and Glutathione next week before I finsish here - some good news!

 

[AndyPandy]

Infusions of athletics? I want some! Hope you get some more detailed answers on Monday. Best wishes, Andy.

 

[A.B.]

Then I had echocardiogram and he says I have Mitral Valve Prolapse. I have proper apt with him on Monday so will discuss all this more I hope...today was a quick one

I went to see KDM in June. When I mentioned that I have suspected mitral valve prolapse (waiting for echocardiogram to confirm) he said that most of his patients have mitral valve prolapse as result of low energy levels. I assume low energy levels means low mitochondrial function in this context but didn't ask as we quickly changed topic. I'm guessing this problem goes away if energy levels improve?

 

[Sidereal]

Mitral valve prolapse syndrome was a popular name back in the day for what sounds like dysautonomia to me.

 

[justy]

@AndyPandy ha ha! yes! I am having three a week but don't feel anymore athletic than I did before. (they are like Myers cocktails)

KDM said the MVP was due to circulatory issues and that it could theoretically improve if my circulation improved. BUT I have EDSIII and I think its more common in EDSers?

I didn't want to know too much about it, which is not like me, but I don't want to worry anymore than I already do about everything. My brain is so bad from the GG that I cant think today at all. Anyway I am only 45 and don't want MORE problems. He will write a report for my GP in the UK - I wonder if they will take notice of THAT result!?

 

[ukxmrv]

Justy, are you taking Benedryl or anything with the GG?

 

[justy]

Justy, are you taking Benedryl or anything with the GG?

I am already on twice daily Loratidine for mast cell activation syndrome - im not sure what is in Benadryl in the uk as its different to US Benadryl or if I can take it alongside other 2nd Gen anti histamines.

KDM said to take some paracetomol...not sure what that will do. He knows im on anti H's daily.

The nurse just said if KDM wants me to have it more slowly then he will have to show them what to do (it was a joke really) no one knows what to do. I think next week I might try asking them to lower the dose.

 

[Misfit Toy]

@justy -did they offer the freedom pump for the IGG? It goes much slower. I want to see your response. IVIG and igg was hard on me and I itched all over. Had a horrible rash. I'm so hoping you can handle it.

After I had Myers cocktails/pushes in 2002-2005-I would become so hot and wiped out from the magnesium. I would fall into an exhausted slumber.

Btw-I could never handle the glutathione. I felt nuts on it and didn't sleep. My liver profile test said I was not a good candidate for glutathione and 23 and Me confirmed it.

They would give me drops via IV and I would feel woozy and anxious.

Gotta love all of these intolerances/mast cell fun-OY!

 

[justy]

I had a long chat with the local pharmacist last night and he has ordered me some butterfly needle sets with tubing so that I can attach the syringe and do a slow push myself - I am going to pick them up today and take one into the clinic on Monday and get them to show me how to do it (if they can work it out).

I STILL feel ill and dizzy three days after the last injection and as I am going on holiday with my husband and kids next week (so looking forward to seeing them after a long separation) I am not going to take any for the next three weeks until I get home. KDM said this is no problem to do as its the kind of drug that just works while you are taking it - no problems with having a break. I cant face travelling feeling like this.

@Misfit Toy -luckily I have tolerated the Glutathione and Athletics very well - a little insomnia on the first one of the week, the 1st infusion was too fast and I got myoclonic jerks so we just slowed it down. I have less reactions on the days I have them - I think its the vit C...

@Sidereal - i'm not sure what you mean when you say sounds like Dysautonomia not MVP? he did an echocardiogram and diagnosed it from that.

 

[Helen]

My liver profile test said I was not a good candidate for glutathione and 23 and Me confirmed it.

Hi Misfit Toy,
If you don´t mind, it would be very interesting to get more details about this. GST-mutations? Thanks in advance

@justy , best of luck with the injections and IV treatments. I do really hope that it will work for you.

 

[Sidereal]

@Sidereal - i'm not sure what you mean when you say sounds like Dysautonomia not MVP? he did an echocardiogram and diagnosed it from that.

What I meant is that mitral valve prolapse is somewhat common in people with dysautonomia and historically the name mitral valve prolapse syndrome was used sometimes for this constellation of symptoms. See for instance:

http://www.mitralvalveprolapse.com/symptoms.html

 

[Misfit Toy]

@justy -when you say you can tolerate athletics, do you mean running, biking or am I missing something entirely? I'm wondering if you are doing physical therapy?! That would be great, a major improvement!

Lucky you, going to France! So glad you will have a reprieve. : )

 

[Valentijn]

@justy -when you say you can tolerate athletics, do you mean running, biking or am I missing something entirely?

It's the Dutch or German name for a specific IV infusion I think

 

[maryb]

@Misfit Toy

You didn't know of course but it made me laugh thanks. Its like Valentijn says, something like your Myers cocktails. Clinics seem to do their own variety, be interested to find out what's in it @justy[/user]

 

[justy]

HA ha yes can you imagine I am so well I can run and bike etc! no such luck. They call it Athletics infusion - its' like a myers cocktail. I don't know all the ingredients, but I do know it has Vit C 60g, Co Q 10 high dose, Magnesium high dose, B12, B6, not sure what else, then they add 2 x Glutathione = 600mg? not sure?

 

[maryb]

I did write down the ingredients of one I had at B/S but I can't find it. Didn't have Bvits in - I wish I could tolerate them orally, be interesting to see if I could via IV.

 

[justy]

I did write down the ingredients of one I had at B/S but I can't find it. Didn't have Bvits in - I wish I could tolerate them orally, be interesting to see if I could via IV.

I don't tolerate high dose B12 or COQ 10 or B6 orally - so I think its great stuff! wish I could still have them when I get home. The anti-inflammatory nature of the Glut has definitely decreased my pain levels quite significantly - bottom pain that I have ben struggling with for two years has gone for now - I can even sit in a seta without a cushion and suffer no ill consequences

 

[maryb]

That bottom pain sounded awful, glad its gone. It sounds like it was worth it for that result alone.

 

[Misfit Toy]

@justy -I didn't think you could run, that's why I was so puzzled. Words...words are so different in other countries. Sneakers in the UK=trainers. knickers=panties. Wanker=so many words! And one of my favorite sayings from the UK, "For fu%$s sake!" Of...effing hell! LOL...I love it.

Athletics...wow, what a name for an IV!