My trip to see Professor De Meirleir (long post)

[AndyPandy]

@justy great that you managed to get yourself and your daughter to the appointment. Hoping that the proposed treatments make a big difference for you.

Thanks for sharing. I have learned a few things about my own situatIon from you.

Best wishes.

 

[Leachim]

Thank you for sharing, I think we learn a lot from sharing our experiences. I hope this is the right track for you, and that there are big improvements in your health to come.

 

[justy]

Thanks @AndyPandy and @Leachim

 

[mermaid]

Thinking of you Justy with all the complex arrangements you are needing to sort out - quite apart from the finances which are eye watering. It must be good to see someone who understands the science when we have so little support in the UK.

 

[justy]

I have to say that despite having to face the reality of how ill I am I came away feeling hopeful for some change and improvement - although KDM didn't exactly say that I felt completely safe in his knowledge of the illness and his calm matter of fact nature helped me to see it as a task we just have to sort out.

My sensitivities to everything have become so bad that I cant imagine trying to deal with this while living in a field in rural Wales with no guidance from a Dr who knows what they are talking about. He reassured me that if I was there they could be tweaking things as soon as they arise and bringing me into the clinic to have extra treatments that may help to get me on the road to tolerating the bug killing. He says my immune system and other systmes are so far gone with the infections I have that they are just going haywire one by one, HPA axis off kilter throwing hormones off, sleep off. He said a big clue to this was that I felt better if I rest all the time.

I hope my daughters issues turn out easier to deal with - she wasn't going to have any testing done because of the money, but we want to stop her from becoming as ill as me - she needs to get on top of it while she is young. Hopefully she will be OK with treatments at a distance as she is still able to work currently - although with lots of time off for ill health.

Onwards and upwards as they say!

 

[mermaid]

Having 'known' you via forums for a long time Justy, I was so sad to hear how severely ill you had become, because I do remember the small improvements you made at one time, or seemed to make from afar - maybe I misread those times. Or maybe you got fresh infections which undid the progress as I find this happens to me but not so severely as you so far, so I have been able to mend the damage on the whole. Getting whooping cough 5 yrs ago was the worst one for me, and I have never got back to the point I was at before it.

I recently got bronchitis, and the after effects seemed to go on and on, and affect my function for weeks, on top of a relapse I had after Christmas. I have however been able to carry on with treatment from a herbalist and that I assume is what is now helping pull me through as I am now improving again. Also I am able to tolerate a wide range of supplements too (some I have to use transdermally).

The MCS sensitivities also must be very difficult to deal with. I used to think that I had them re food, but now I think much of mine can be put down to the hiatus hernia I have now been diagnosed with (ie acidic foods - avoid!) and life long IBS (even NHS are prepared to look at high FODMAP foods now - avoid!) and with these restrictions I am functioning much better now.

It is hard to quantify what help for me Dr Myhill/Dr Forsyth have been. Clearly they do not have the expertise of Dr Meirleir, but maybe by testing/dealing with some things at a basic level and allowing my body to be supported and to heal, I have got away so far with a milder form of ME. I am not cured, but also I am not as bad as I could be, or might have been if I had not paid attention to those things. For people more severely affected though, as you are, you need more advanced help and Dr Meirleir is the best option.

As you say though, better to try and help your daughter's issues at this stage, than allow it to get complex as it has for you.

 

[Valentijn]

I have to say that despite having to face the reality of how ill I am I came away feeling hopeful for some change and improvement - although KDM didn't exactly say that I felt completely safe in his knowledge of the illness and his calm matter of fact nature helped me to see it as a task we just have to sort out.

Yeah, it's great having a doctor that will test for everything, treat whatever comes up, tweak the treatment if something doesn't work, or try a different approach. It's a very reassuring situation to be in, especially after being shunned by so many other medical practitioners. Basically there's no point where he's giving up on us, no matter how frustrating or complex our illness gets.

I hope my daughters issues turn out easier to deal with - she wasn't going to have any testing done because of the money, but we want to stop her from becoming as ill as me - she needs to get on top of it while she is young. Hopefully she will be OK with treatments at a distance as she is still able to work currently - although with lots of time off for ill health.

If her problems aren't as severe then oral antibiotics are probably sufficient. My mom tested positive for Lyme via the same test as me in Belgium, and also for similar elevated inflammatory markers back in Seattle. And after 6 months or less of oral antibiotics, her inflammatory stuff is back in range and she's not having the chronic symptoms (non-ME) which she'd had for a while.

 

[Daffodil]

hi justy. I am so, so glad your trip with KDM was positive. I can tell he is going to give you the right treatment.

I guess the phrase, "rome wasn't built in a day" might apply here lol.

hang in there and know that it will get better.

xoxo

ps...I wonder if you could get a special rate from eurovolley hotel if you tell them you need to stay 3 months. it is not fancy but has everything you need.

 

[CantThink]

@justy


Re: accommodation -

I don't know prices (might be crazy expensive), but when I was looking at accommodation before I noticed this place:

http://www.apparthotel.be/apparthot...iekId=1220&taal=uk&hotelcat=brusselsresidence

I think it is somewhat in the north Brussels/clinic area. Thought I'd pass it on in case it might be of interest.

 

[justy]

@justy


Re: accommodation -

I don't know prices (might be crazy expensive), but when I was looking at accommodation before I noticed this place:

http://www.apparthotel.be/apparthotel-brussels-pegasus-residence.asp?cat= Services and Facilities&rubriekId=1220&taal=uk&hotelcat=brusselsresidence

I think it is somewhat in the north Brussels/clinic area. Thought I'd pass it on in case it might be of interest.

Been waiting back on them for availability and price. Eurovolley is no good as no cooking facilities there and there food is very expensive (although lovely).

I am going to be there with one other person for the first 6 weeks, then my husband and children will be coming out for the summer holidays so need a place we can all stay - chasing up all leads now!

 

[brenda]

Justy

I would think that you would be better off renting or sub - renting a house/flat from someone for a few months. People did that often when I was living in Germany as it is allowed to sub-rent your place. If it is like Germany, there will be special agencies to do that. I used one myself and found someone to sub - rent my place for a year while I was back here.

 

[justy]

Justy

I would think that you would be better off renting or sub - renting a house/flat from someone for a few months. People did that often when I was living in Germany as it is allowed to sub-rent your place. If it is like Germany, there will be special agencies to do that. I used one myself and found someone to sub - rent my place for a year while I was back here.

I will have a look into that, thanks. Have put an ad on ex pats website and looking at ALL posibilites. One issue with Brussels is that most of the accommodation is in the Euorpean quarter for the parliament and centre for tourists - if I stay in one of these areas it will be too far for taxis to the clinic and back as I cant go by public transport due to being too ill to manage that daily.

Thanks for the suggestion!

 

[CantThink]

I've seen some sublets. I think the challenge is getting one in the right location - and then it being the right size and accessible with a lift. It seems extremely difficult. I stayed in Brussels for a few weeks in an apartment for a language course in 2002, and that was easy to get nearby the university and not so expensive. It seems things have changed a bit.

 

[Charles555nc]

Here's whats working for me,
A long time ago, I realized there was no instant cure, so Ive been fighting for 5% here, 5% there...hoping one day for those to add up to the big 100% improvement.
Molybdenum 5%, methylation supplements 5%, zinc 5%, vitamin D 5%, niaicinamide 5%, famvir 5%, Isentress 5%, iodine 5%, sodium ascorbate vitamin C 5%, NAC 5%, short term hydrocortisone (for adrenals) 5%, melatonin 5%, low dose naltrexone 5%, clindamyacin and tindamax 5%, L-glutamine, l-lysine, l-proline, L-glycine 5%...

 

[justy]

Here's whats working for me,
A long time ago, I realized there was no instant cure, so Ive been fighting for 5% here, 5% there...hoping one day for those to add up to the big 100% improvement.
Molybdenum 5%, methylation supplements 5%, zinc 5%, vitamin D 5%, niaicinamide 5%, famvir 5%, Isentress 5%, iodine 5%, sodium ascorbate vitamin C 5%, NAC 5%, short term hydrocortisone (for adrenals) 5%, melatonin 5%, low dose naltrexone 5%, clindamyacin and tindamax 5%, L-glutamine, l-lysine, l-proline, L-glycine 5%...

Yep certainly no instatnt cure and even knowing I have bacterial infections is not helping as I cant tolerate the treatment. My doctor is going to plug away at getting those little gains for me until we can bring out the big guns and blast the bacteria away, then I guess it will be a mopping up job and finessing to reach the best level I can. Right now id love to be at 50%, but if im really honest I want and need 70 -80% functioning to feel life is really good.

Today and for the past two years im back to only getting up for meals and short trips out - but I am lucky, yesterday we went to the beach with my wheelchair and took a flask of tea and some leftover birthday cake and I just lay on a rug and stared at the beautiful blue sky while my family kicked a ball around. I'ts moments like those I am living for.

Today we decided we WILL definitely be going to Brussels June, July and August. My 12 year old daughter is unhappy to be away from home and says she hates Brussels, although they will only come out for the school holidays - 6 weeks - I just hate being sick and want some improvement in my life.

 

[SOC]

Right now id love to be at 50%, but if im really honest I want and need 70 -80% functioning to feel life is really good.

Today and for the past two years im back to only getting up for meals and short trips out - but I am lucky, yesterday we went to the beach with my wheelchair and took a flask of tea and some leftover birthday cake and I just lay on a rug and stared at the beautiful blue sky while my family kicked a ball around. I'ts moments like those I am living for.

. That sounds SO familiar! I well remember those days. I wasn't even getting out of bed for most meals -- it was too hard to sit in an upright chair that long. All I wanted was SOME kind of life... and when I got it, I was very pleased. Of course, then I wanted more, but I never stopped being grateful for having more life than lying around in bed watching birds.

I'm in that 70-80% functioning range now and it feels relatively normal. I can pretend I have a typical life although if I'm honest with myself, I know I can't do a lot of things healthy people do. Nevertheless, being able to take care of myself, including shopping, and being able to work (if only from home at an easy job) feels really good.

I'm glad to hear that KDM is willing to continue to work with where you are and find ways to keep you moving forward. That's so refreshing after so many stories of doctors dismissing or giving up on patients.

 

[xrunner]

The biggest decisions are financial right now as we also took my daughter who has been ill on and off for some years.

Hi @justy, I used to be in a very bad shape and I couldn't tolerate iv nor could I afford the full treatment. However oral abx worked for me, so testing aside, treatment was quite affordable. Best wishes with travel and treatment plans.

 

[xrunner]

Two CFS/Lyme specialists told me that they had not seen these reactions in other patients.

For about three years I was on/off multiple abx, some quite toxic and didn't have problems. In January I just took a week course of clarithromycin, just one pill daily for a chest infection and at the end of the week ended up in A&E with tachicardia and muscle spasms.
I don't think anybody really understands these reactions...

 

[justy]

Thanks for all your support, without my friends at PR I don't know where I would be right now! It's also heartening to hear of others who have improved and that keeps me focused.

Here's hoping that he can get me to a place where I can tolerate the oral antibiotics at home....that's part of the plan anyway.

One of the things that impresses me most about kdm - apart from his vast encyclopaedic knowledge is his desire to keep digging and looking for answers no matter where you are. Last year he told me he didn't care what I had or what its called - he just wants to try and get me better functioning. You can see how hard he works for patients when you are in his clinic - he told me last Monday he would be at work till midnight. He really is dedicated to all patients because he sees everyone who can get to him and afford some testing.

 

[PNR2008]

@justy I am in awe of your determination and pray your road gets easier. I remember the fight I used to have and it truly is a good thing also I know about grabbing 5% here, 5% there. Take care.