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My trip to see Professor De Meirleir (long post)

msf

Senior Member
Messages
3,650
That's where I have pain too. I think in my case it's because that's where Yersinia lives
(in the cecum), but I could also be the appendix. I guess there are probably a lot of bacteria that live in this are, so perhaps this isn't a very specific symptom.
 

cigana

Senior Member
Messages
1,095
Location
UK
@msf I am negative for Yersinia, but not sure I have lower right quadrant pain - maybe f you push hard? I have had lower left quadrant pain for many years - but the right is usually ok. Having said that KDM found an area on the right of my stomach that did hurt like hell - I presumed this was my 'immune spot' he looks for - when he pressed there on my daughter she nearly flew off the table.
Same happened to me...I really wonder what that spot is and how he knew about it!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
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.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
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.
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@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...
 

Daffodil

Senior Member
Messages
5,875
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
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
KDM used to do the pressing on the abdomen before he started finding so much Lyme. I always thought it was related to immune functioning...