My trip to see Professor De Meirleir (long post)
- Thread starter justy
- Start date
Same happened to me...I really wonder what that spot is and how he knew about it!
gregh286
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- Londonderry, Northern Ireland.
So kdm diagnose me with lyme disease.
he will send a prescription for drugs.
@justy ...did a uk pharmacist accept a prescription from him.
i wonder will my local pharmacy accept the script.
he will send a prescription for drugs.
@justy ...did a uk pharmacist accept a prescription from him.
i wonder will my local pharmacy accept the script.
Hi scripts are legal in the UK- sometimes I have to ask the clinic to put on my date of birth and the email address of the clinic - but they only write it on after in blue pen. If your pharmacist sayd they cant accept it then they are worng - you could point out to them that all EU scripts are legal in the UK...I found a local independent pharmacy better than the chains for being helpful.
gregh286
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Thanks justy......very interesting.
hope ur doing ok
hope ur doing ok
As I am in Brussels now having treatment I thought I would post an update. Today is my first free day with no trip to the clinic so I have a bit more energy and space to reflect on the week so far.
I have had three IV infusions of Glutathione (2 vials) and 'athletes infusion' which I gather is like a Myers cocktail containing amongst others high dose Vitamin C, B12, B6, CO Q 10, magnesium etc (I haven't asked for the full list as I don't want t think about it too much)
The biggest worry was the travelling (10 hour car journey split over two days), and the strong possibility that I might have an allergic reaction to the infusions - luckily both went well! My mast cells are behaving themselves (perhaps due to the high doses of Vit C?) and I was wiped, but not bedridden from the travel.
During the first infusion, which was supposed to take 45 minutes I started getting massive body jerks and head shaking like I used to before starting the mast cell drugs (H1 AND H2 blockers and Vit C) it was continuous and my brain went into melt down and my speech started slurring. The nurse asked KDM what to do and he suggested slowing the rate down and see how that went. After slowing it down the jerking and shaking etc all went away - everyone seemed surprised by my reaction, and we have no idea why this would happen. Now I am having them over 2 -3 hours rather than 45 minutes and I feel ok with this.
Each day, about an hour or two after the IV I have a big slump that feels like I need to lay down NOW!! KDM said this was normal and meant I was dumping toxins from the Glutathione. A few hours rest in bed usually makes this feeling pass - yesterday I drank a lot of extra water and didn't feel so bad afterwards.
I had an apt with KDM on Wednesday and I asked him about my Lyme status - would we retest? he said I have a clinical dx of Lyme based on other bloods, co infections and symptoms. He said I might show up positive after some treatment, but I needn't be in a hurry - he knows how sensitive and ill I am and is thankfully really respectful of this and wants to take the journey to recovery nice and slow. I have LOW C4A and asked him why this was if I have Lyme/ he said it is high in acute Lyme but he sees it low in chronic/late stage.
I asked him if my + Tularaemia was a real result considering I live in the UK and he said 'yes, it is very unusual - you are one of my first cases in the UK'. I asked him if it could be a cross contamination with Brucellosis - but he said no it was definitely Tularaemia and asked me if I wanted testing for Brucella, he joked and said I also didn't need to rush to add yet more infections - I have enough to be going on with!
I then asked if I could be doing IM or sub Q Gamma Globulin while I was here for 6 weeks - to maximise my time and if I could then learn to do it myself and take it away with me. He said that was a good idea and I could definitely do that. He needs to order in some gammanorm as they don't have any at the moment - I will have it twice a week in the clinic and then take it away to do twice a week at home myself. He said he has a number of patients in Norway who are doing this now and finding it helpful.
I asked him about taking it home and the need to keep it cold/refrigerate and he said it was not necessary, even on a long car journey it will be fine.
I will also have an echocardiogram while I am here - but he will fit it in one day when he is able when I am at the clinic.
Now I have 4 days with nothing booked in, and am not really well enough ti go out and we have no car so will have to just sit tight and rest over the long weekend before starting again next week. Luckily we have a nice apartment , not too far from the clinic. My husband went home today to the kids and my mother in law is here for three weeks and then my mother is coming for the last two.
I have had three IV infusions of Glutathione (2 vials) and 'athletes infusion' which I gather is like a Myers cocktail containing amongst others high dose Vitamin C, B12, B6, CO Q 10, magnesium etc (I haven't asked for the full list as I don't want t think about it too much)
The biggest worry was the travelling (10 hour car journey split over two days), and the strong possibility that I might have an allergic reaction to the infusions - luckily both went well! My mast cells are behaving themselves (perhaps due to the high doses of Vit C?) and I was wiped, but not bedridden from the travel.
During the first infusion, which was supposed to take 45 minutes I started getting massive body jerks and head shaking like I used to before starting the mast cell drugs (H1 AND H2 blockers and Vit C) it was continuous and my brain went into melt down and my speech started slurring. The nurse asked KDM what to do and he suggested slowing the rate down and see how that went. After slowing it down the jerking and shaking etc all went away - everyone seemed surprised by my reaction, and we have no idea why this would happen. Now I am having them over 2 -3 hours rather than 45 minutes and I feel ok with this.
Each day, about an hour or two after the IV I have a big slump that feels like I need to lay down NOW!! KDM said this was normal and meant I was dumping toxins from the Glutathione. A few hours rest in bed usually makes this feeling pass - yesterday I drank a lot of extra water and didn't feel so bad afterwards.
I had an apt with KDM on Wednesday and I asked him about my Lyme status - would we retest? he said I have a clinical dx of Lyme based on other bloods, co infections and symptoms. He said I might show up positive after some treatment, but I needn't be in a hurry - he knows how sensitive and ill I am and is thankfully really respectful of this and wants to take the journey to recovery nice and slow. I have LOW C4A and asked him why this was if I have Lyme/ he said it is high in acute Lyme but he sees it low in chronic/late stage.
I asked him if my + Tularaemia was a real result considering I live in the UK and he said 'yes, it is very unusual - you are one of my first cases in the UK'. I asked him if it could be a cross contamination with Brucellosis - but he said no it was definitely Tularaemia and asked me if I wanted testing for Brucella, he joked and said I also didn't need to rush to add yet more infections - I have enough to be going on with!
I then asked if I could be doing IM or sub Q Gamma Globulin while I was here for 6 weeks - to maximise my time and if I could then learn to do it myself and take it away with me. He said that was a good idea and I could definitely do that. He needs to order in some gammanorm as they don't have any at the moment - I will have it twice a week in the clinic and then take it away to do twice a week at home myself. He said he has a number of patients in Norway who are doing this now and finding it helpful.
I asked him about taking it home and the need to keep it cold/refrigerate and he said it was not necessary, even on a long car journey it will be fine.
I will also have an echocardiogram while I am here - but he will fit it in one day when he is able when I am at the clinic.
Now I have 4 days with nothing booked in, and am not really well enough ti go out and we have no car so will have to just sit tight and rest over the long weekend before starting again next week. Luckily we have a nice apartment , not too far from the clinic. My husband went home today to the kids and my mother in law is here for three weeks and then my mother is coming for the last two.
gregh286
Senior Member
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- 979
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- Londonderry, Northern Ireland.
Good luck justy....hope treatment goes well.
hes put me on clarithroymcin and tetrasyl for the lyme.
prescription should be here today.
hes put me on clarithroymcin and tetrasyl for the lyme.
prescription should be here today.
Glad your first week went okay Justy, what a relief for you to actually get there and be able to start.
Brilliant that KdM being on the spot is able to tweak your treatment as and when needed, you'll need the rest now and the benefits from the infusions will build up as you go on. Keep well hydrated. Hope the rest of your time there goes well.
Brilliant that KdM being on the spot is able to tweak your treatment as and when needed, you'll need the rest now and the benefits from the infusions will build up as you go on. Keep well hydrated. Hope the rest of your time there goes well.
Last edited:
JaimeS
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@justy - I really hope you're doing well! It sounds as though things are progressing, but I'm awfully sorry to hear of your glutathione reaction!
-J
-J
@JaimeS - well to be honest it wasn't that bad and didn't last long. I was more oncenred that I would react badly and not be able to do it at all.
Is very hot in Brussels today and finding it hard to deal with the heat - just laying around on the bed pretending to be doing my reading for next years university course...
Is very hot in Brussels today and finding it hard to deal with the heat - just laying around on the bed pretending to be doing my reading for next years university course...
Gingergrrl
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Best wishes @justy and so happy you made it there for treatment. All good things ahead!
bertiedog
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Hanna
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@justy, maybe your initial reaction to the glutathion IV was more linked to the stress/ adrenal weakness than to the product itself.
Glad you are in Brussels for treatment ! Good luck! Wish you good results !
Glad you are in Brussels for treatment ! Good luck! Wish you good results !
Daffodil
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i had a friend who told me KDM pressed somewhere in his lower abdomen and asked if it hurt; my friend said, "yes" and KDM said that meant lyme
JaimeS
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Yes, I know KDM believes that's lyme-associated. Maybe it is. There is a lot of immune tissue there, so I wonder why it's so characteristic of lyme rather than other infection or inflammation...
-J
-J
