My trip to see Professor De Meirleir (long post)

[Valentijn]

@justy, maybe your initial reaction to the glutathion IV was more linked to the stress/ adrenal weakness than to the product itself.

My guess would have been a nervous system reaction to increased blood volume.

 

[Valentijn]

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

A GP did that once, felt that it was firm/swollen, and proclaimed that I must be constipated. Her opinion did not change when I informed her that I'd been having normal bowel movements, and had in fact had one 15 minutes before the appointment

I'm not sure what KDM's theory is based upon, but it's already looking more plausible than the GP's theory!

 

[justy]

My guess would have been a nervous system reaction to increased blood volume.

I think this is unlikely seeing as it happened straight away - within a couple of minutes of starting the drip on fast - I don't think there was much time for blood volume to increase. After 5 more minutes I was shaking my head like someone with Parkinsons, my arms were flinging out all over the place and my speech was slurring and halted.

 

[justy]

2nd week finished - feeling really homesick now, but I am at least a 1/3 of the way there!

My chronic, unbearable bottom pain has completely gone - I am attributing this to the anti-inflammatory effects of the Glutathione and possibly high dose iv vit C. I had told myself I might not have any noticeable positive effects from this treatment but so far this is a good result. I have also not itched at all since being here and having the treatments. Even on double dose ant H's I still get breakthrough itching. On the downside I am having some more throat swelling after certain foods - so am having to be stricter, took extra extra H1 blocker the other day and it just made me really tired but the tight lumpy feeling in the throat subsided quicker.

The clinic is very quiet - lots of new patients having appts, but not many people in the infusion room - most days just me so am missing meeting new people and having others to support and lean on.

 

[AndyPandy]

Progress! That's great @justy

There's always company and support for you on PR!

 

[justy]

I think I may have spoken too soon - woke up this morning itching all over - no idea why!

 

[AndyPandy]

 

[SOC]

I think I may have spoken too soon - woke up this morning itching all over - no idea why!

Ain't that the way of things? My guess is that there will be normal ups and downs through the course of treatment. Let's hope this is one and that the overall trend the next few weeks is nicely upwards.

 

[voner]

....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!.......

Justy,

you might have an interest in the latest "this week in microbiology" podcast. they discuss tularemia.

http://www.microbeworld.org/podcast...ogy/archives/1932-twim-106-lawn-mower-disease

 

[justy]

He said in my treatment report the Tularaemia is a past infection, caught from a tick bite.

 

[Gingergrrl]

I think I may have spoken too soon - woke up this morning itching all over - no idea why!

@justy oh no! Is the itching gone now and does your doc think it could be related to the glutathione treatment? Also, kept meaning to ask if you have ever tried glutathione by nebulizer at any point- both as a lung and/or as a systemic treatment? Hope you are feeling better now.

 

[justy]

@Gingergrrl I'm afraid the itching has now been conitous for three days - but during the three days I am NOT having the treatments. I have lost a whole nights sleep which always wreaks havoc with my health.

It is also very hot here right now and we don't have air con so I think that may be causing the mast cells to play up? but im not sure. Supposed to start low dose Gamma Globulin injections today but I don't know if its a good idea when I am reacting like this...one good thing is ...no im not going to say it in case I curse that as well.

Have been trying to find a solution for carrying the three months of GG home - I can buy a special medical bag, but we don't have a freezer here to freeze the gel packs and we are going on a few long drives firstly to go to France and then to go home.

 

[Gingergrrl]

Sorry @justy that the itching is back and hoping you get a break from the heat soon. I could be wrong but I think @Valentijn once told me about a travel fridge/freezer that she liked but I no longer have the details b/c they were saved on my old computer. Am also not sure how it works with GG injections.

But in my case, we had planned to use it for a car trip and I am assuming you are flying (or is that wrong?) Is France for a mini vacation or part of your medical treatment? I know it is hard to travel anywhere being this ill but I hope you are able to enjoy it!

 

[justy]

they just have to be stored at 2-8 degrees C . We are not flying - going by car and the trip to France is a holiday that we had t cancel last year as I was too ill. I think I will spend most of it in bed, but at least I will be with my family again then! Missing them so much

 

[justy]

The gamma globulin is not going well - very dizzy and headache and feel awful after it - much worse than when I first came out here. Cant stand up without feeling like im going to fall over.

Infusions also been stopped due to bruising. Not sure if I should stick with the GG - I feel like hell, after beginning to feel a little better...

 

[Gingergrrl]

Am sorry to hear this @justy. What does your dr think?

 

[justy]

Am seeing him tomorrow . Also going to finally get my echocardiogram then. I don't know if I can carry on with the GG

 

[MadeleineKM]

I am so very sorry

 

[AndyPandy]

So sorry @justy. Sending you love and encouragement.

 

[maryb]

@justy
hope he has some suggestions, lower dose, less frequent?? anyhow he's the expert.
Has anyone else on PR had this reaction to GG?