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My first appointment with KDM

RML

Senior Member
Messages
403
Thanks @AndyPandy

@Sushi I did check the website and it mentions needing to give 48 hrs notice for special meds etc. But it wasn't very clear, I think that may be for needing wheelchair or oxygen tank or dialysis machine, more for equipment than just meds. I will give them a call in morning to clarify. It would be a great solution to packing dilemma which is still unsorted! My 'maybe' pile could be added into case, and if not, I will be unpacking more stuff and my maybe pile will be a Not This Time pile.
I'm giving it a break til the morning. Done my best for today, even if I didn't get very far. I woke with a splitting headache and soon turned migrainey, so had to take breaks briefly to settle it, but had to choice but to push through so had to take it slow and easy while battling through.
 

RML

Senior Member
Messages
403
Just when I was all delighted to land in Belgium and finally be here, it all goes pear shaped.

Basically we could no longer get a shuttle bus as flight was late in and we didn't contact them at 8.30 like I told I would need it at. When we did ring, wouldn't come. So tried to flag a taxi at that kiss and ride spot, then someone said he needed to go to another level to get taxis. When asked prices, they said 46E, so argued with them, no way would pay that much. So went back up to kiss and ride level, tried flagging a taxi again. Ages later finally found a lovely taxi guy, who would take us to hotel for 30E. Then couldn't get into hotel, all staff were gone, and over the phone he was so unhelpful and rude , because the code wouldn't work, tried it ten /twenty time.Even the taxi guy talking to them on phone too, trying to speak French, couldn't work it out.

Eventually now I am in my room, an hour after first ringing them for lift, and now I have no access to fridge for my VSL so am worried it will go off (I don't know how long it keeps unrefrigerated?) . My mum has the cool bag hanging out the window but need to think of something else cos room is like a sauna. So really need to have window open.

Had so much hassle in last few days, so when encountered more issues here, I just wanted to sit on my case and cry in the airport instead trying to get the taxi. I'm so exhausted, I can't even think about tomorrow and treatment now. I hope it will be worth it after all this stress and energy trying to get better.


Hopefully tomorrow will start to go better from now on.

I am so glad I didn't choose to stay here for 3 months, I don't know if I will stick the week even.
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
@RML sorry you had such a bad day. Sounds incredibly stressful and so much harder to deal with when you aren't well.

Hope tomorrow is a better day for you.

Best wishes Andy
 

RML

Senior Member
Messages
403
Thanks @Sushi You're a real life saver! Also with the tip on meds as seperate carry on bag. Rang them this morning to check, and it was possible, and worked out great, no issues at all and freed up lots of space in luggage.

Yes @AndyPandy always seems to be lots of road blocks and hoops to jump through. Sometimes I wonder if it's worth the extra effort and stress. But of course, most aren't major disasters really, just seems that way when already pushing myself to keep going and getting though the everyday stuff.
 

Valentijn

Senior Member
Messages
15,786
@RML - My fiance and I are arriving in Brussels around 3-4pm this afternoon (Monday), with our car. If you need some help getting settled in, going to a supermarket, buying medicinal Belgian chocolates, yelling at someone in Dutch and French, etc, just say the word :cool:

Though when it comes to swearing everyone usually uses the English versions anyhow, so you can probably handle that bit :D
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi RML - I really hope things settle down for you and the treatment today went ok. It is so very stressful for us trying to travel and organise etc when so sick.

I still never recovered from my trip there in May before I had the stress fo an exam, then a virus, now a stomach bug. To add to all that the hassle of relocating in a foreign language and the possibility of treatment making us feel worse must be overwhelming.

Try and relax into the next week at Eurovolley - there is a lovely park opposite where you can go and sit under the huge Beech trees and be with nature - if you use a wheelchair it has great paths for wheeling on. As treatment progresses and you move into your 'real' accommodation hopefully you will settle into a new routine and be able to rest as much as possible.

Sending hugs :hug::hug: your way if you need them.

Justy.x
 

RML

Senior Member
Messages
403
Thanks @justy I hope it will settle down soon, and I will be glad when get to proper accommodation, so can unpack and be more freedom to eat/do whenever wherever etc

@Valentijn You are very kind. I hope your next sessions with Iv's will be as successful as first lot for you. Perhaps see you at clinic tomorrow!

Well, in general first day is done and over. I didn't sleep much last night (and same for last few nights actually) and after travel and packing I was so wrecked this morning. I scrambled out of bed for breakfast last minute, then went back to bed.

We had to check in properly after breakfast and leave in VSL and Readisorb to fridge. We didn't have passports with us so I went back up stairs to grab them. I mean I really struggled to even put one foot in front of other, I was so bad, not been this bad in ages. I have had great improvement in energy and therefore ability to do things in last 2 months which was amazing help in getting to this point. I don't think i would have made it possible if i was bedbound for last weeks trying to organise it all. But in last few days i did worry i was pushing it too far doing too much, i feel i am due a crash. probably what is wrong with me now. but hopefully i can rest up in next few days.

Anyway, after a sleep after breakfast, got up again around 12 to get ready. it was so hot i had to change into shorts and vest, such a pain trying to find everything packed nicely away in case. I will get more organised on that front tomorrow.
Arrived at clinic about 10 mins before 1, the nurses were on lunch so I didn't mind waiting.I was still waiting by 1.30 I worried the secretary didn't pass it on to nurses that I arrived like she said. I remember Valentijn mentioning this before. It didn't take too long to set up when I did get called in. A little sore and a little trouble but it was ok.

It was a bit surreal watching the drops dripping away. Only taken like 2 years and 10 months to get to this point. I felt a little bitter about it , kinda criminal in a way if that makes sense. Originally, I said I didn't mind sitting afterwards but when it was in, the nurse told me to stay lying down, and it was right thing as i was so tired. Eventually my mum came in and joined me, herself being a nurse was super nosey and inquisitive about the set up etc. I kept telling her to shhh! I regretted the shorts as it was freezing with A/C on, will wear long pants tomo.

my arm did sting a little every now and then, and fingers felt a little numb. I don't know if this is to be expected or is a bad thing? I had slight headache by the end of it. But that is probably from the tiredness and rushing, rather than a reaction. I did have migraine on Sat and Sun anyway. I am not sure how much I can use my arm now , am trying to keep it straight and not avoid use it. But it is a bit restrictive. I had to ask my mum to tie up my hair twice. And was difficult to do up my seat belt and take on and off cardy. Another thing I realised is most of my sweaters and cardys are fairly tight fitting and the bandage is quite thick so hard to squeeze into it.


It took longer than an hour to complete, I think we were back at the hotel room til 3. Then went for another sleep haha! I couldn't really sleep properly, drop off fully so only resting. it was so hot and stuffy in the room, it was making me dopey so went for a stroll in park to wake me up a bit. Went for another after dinner. Now just resting before sleep and do it all over again tomorrow!

I am still confused over whether I am down for 4 or 5 days, I think KDM wrote 5 days on green slip, the secretary told me 5 days a week at last visit. And I emailed her again about week and half ago, to confirm this, as someone told me clinic didn't open on Fridays. Her email said 5. But when I asked the nurse she said some weeks are open Friday but not every week. Then I wanted to know which Fridays to come in on, so she checked my file and then told me only to come in 4 days a week. the more off days the better, but wonder why was told wrong in first place. I mean surely the secretary checked my file also before replying to email too and why KDM say 5 days too.
I will ask a different nurse tomo maybe.

my phone is gone all dodgy and my mum's ipad won't connect to wifi even though my laptop does, she wants to google treatments and transport etc. But what we came here for, seems to be working so far. But a long way to go yet and 3 months still feels forever.
 

Gingergrrl

Senior Member
Messages
16,171
@RML I am really proud of all your hard work and know you are on the right track now. I understand about feeling bitter re: why it took so long to finally find the right doctor & treatment after being given the run around for years like you said. I wish I had an answer for that but do not. I am so thankful for the handful of U.S. clinics and KDM who are able to provide us the care we need. Will you be moving to another hotel or apt with air conditioning?!!
 

RML

Senior Member
Messages
403
Yes I am moving to proper place on Friday, only staying here temporary due to mix up with start dates at apt booking. So in a way I am glad there is no clinic on Friday now, easier to go directly there from hostel than dragging cases and bags into clinic with us. Once we are in the apt can set up properly, unpack and lay out our toiletries and bits and pieces, and have access to own kitchen and have own food to make. I didn't check if they have AC though, don't think of these things in cold sunless Ireland.

Only problem is it is further away from clinic and will have to travel but can't get everything perfect.
 

Valentijn

Senior Member
Messages
15,786
It's normal for the cannula itself to sting a bit, but the fluid shouldn't while it's going in. If it's stinging after they wrap you up, it can help to rearrange the bandaging a bit, basically to make sure it isn't pushing the cannula.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
@RML was offline for a little while so only catching up now. Gosh my heart goes out to you with the stress of the packing, travelling, mix ups, planes, trains and automobiles! You poor thing. I'm stressed out just reading your accounts of it all and don't think I could manage all that you are doing :(

I hope to God you settle in to a better routine soon and that you can spend time recovering as well as getting your treatment. It's terrible to be so far away from home but so good your mother is with you.

I think of you a lot and I'm praying that your treatment is the best thing that ever happens to you!
 

filfla4

Senior Member
Messages
236
Hi everyone! I haven't been around for a while as I've been on the move and have had computer problems.

So...we've now been based in Brussels for 6.5 weeks. We've had 4 weeks of IV azithromycin, which was then continued orally for the two-week break. This is now our first week of 6 weeks of IV Rocephin. We have it 4 times a week, Monday to Thursday. The clinic don't seem too bothered about us keeping the exact time of our appointments for IV, except on Mondays when they need to put in a fresh port.

For those of you who don't know me, I'm the one going through the waiting room with my bodyguards! (My two teenage sons who are also having treatment!) I'd love to meet you all. Yesterday and today I had the pleasure of chatting with Valentijn and her fiancee Jan. It's great to exchange stories!

I've now been a patient of kdm for 3yrs and 9 months. Today I got the results of my blood tests. The blood was drawn on 23rd June when we first arrived in Brussels. I'm happy to report that over the years of kdm treatment my CD57, which is often considered a marker for Lyme, has gone from 29 to 87, both on a range of 60-360. Yay!!!! So now I'm finally within range, even though it's still low. That's very positive for me. I'm on the right track! I won't bother you with the details of all my other tests but several are still very seriously out of whack, showing a high level of internal inflammation.

With these results in hand, I had a follow-up appointment with kdm today. He is of the opinion that I definitely have other co-infections which have not tested positive, particularly Bartonella since my VEGF is high at 5.09 on a range of 0.37-1.49. He is now going to add the antibiotic Rifampicin to my treatment protocol. I'm not clear yet whether this will be administered by IV or orally yet. No doubt he will have to write up his report first.

It is clear that kdm sees his treatment protocol as a process. It is not a one-time IV treatment which will fix all. I say this because I can compare my results to those of my sons. I started the treatment about 2yrs before they did. My eldest son is doing very well but very definitely has Bartonella too. He has very clear bart-type stretch marks on his abdomen and back, which kdm examined today. He's also giving him Rifampicin. My younger son is struggling much more with the treatment, ie herxing. On the one hand that is positive because it means there is die-off but on the other hand, at 15yrs he's still so young to be going through all this. Despite his results, kdm didn't want to add anything further to his treatment protocol. He needs to get over this hurdle first.

So that's all from me for today. I'm living just 10 minutes away from the clinic in Diegem and also have a car. So if anyone has any emergencies, please let me know. The best way to reach me is through Facebook as I check those messages frequently. Feel free to "friend" me if I can help out: Bibo Gatt from Malta!!
 

RML

Senior Member
Messages
403
Thank u @JoanDublin u are very kind. There has been a lot involved in getting to this point, but I am hoping it will be worthwhile then I won't mind so much. I hope your boy is doing the best he can manage or at least finds some treatment or benefit soon.

Late last night, I had quite a high temperature and my skin felt very hot. Even though I didn't feel bad or anything. My hand and fingers were very swollen again and felt uncomfortable. Also because I have such tiny childlike wrists that my fat hand and fingers looked odd like they didn't belong to such small wrist.

I arrived today about 10 mins before at clinic like I normally do, it was quite deserted. One patient finishing up there IV, and another waiting to be hooked up too. There was also a girl from Netherlands getting set up to bring her stuff home with her.

Kenny walked by a few times and I was only one sitting in waiting room. I was fine when I arrived there and earlier this morning. But while waiting to be called, suddenly felt very drowsy and sleepy and soon was fast asleep and slumped in chair.
Second or third Kenny came by he stopped and asked was I ok, which I wasn't expecting really. He usually keeps to himself. By then it was 1.20 was with no patients I didn't understand what the hold up was. And by then, I was too sleepy to manage getting out of chair to ask. Then KDM came back to nurses station, I didn't hear what he was saying but I was rushed in then. Got to lie on bed for it in nurses station.

I mean I didn't feel in any way bad but just zonked tired suddenly, my Mum said I was very pale too, but she said that last night too when I had the temperature, so perhaps I had it too this morning.


About the infusion, mine are going very slow, taking rocephine nearly 2 hours instead of 45 mins. Yesterday, the guy hooked up just before me was done and getting unhooked when my bad was more than half full. Also a girl got unhooked at same time and she arrived way after me. So i wandered out to check with nurse, also concerned because the area around the plaster, not needle site, was bright red and a little raised. But she said it was fine, and said she set it to go slow, so turned it up. It was done quickly after that.

Today, after an hour, bag was still 3/4 full, so Jan turned it up a bit and taped the port in closer to my arm. Even as he walked by a few more times, kept glancing at mostly filled bag. Another 40 mins, Noosa turned it up further and soon it was empty.

So I arrived there 12.50, didn't get IV plugged in til about 1.20 ( didn't check time but about this anyway) it was 3.15 by time I was done. I don't know if this is usual. I felt bad because I was only patient there for last hour of it,and I wondered when the clinic closes and nurses wanted to go home haha!

Anyway, she said tomorrow will be very busy.

I also asked about the extra separate infusions. I wasn't sure if I would need a consult with KDM before I could get this but She agreed and I will get it tomorrow. I will worked out if I can afford the extras for the full run of it or maybe just some weeks.
 
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RML

Senior Member
Messages
403
After an hour waiting for our food, the girl came over to tell us there was no cook available today. She didn't have too much English so was hard, I was trying to ask did this just happen now or when we ordered? So couldn't work that out why it was so long til we got told. I was beginning to wonder why it was taking so long just for an omelette.

I have had no protein hardly in last few days so was longing for some eggs or something good for me. All she could offer me was toasted cheese sandwich. It was fine, but that was my breakfast, lunch and now tea too. So much for staying off bread for 6 weeks like that consultant advised the week before I came here. All i'm eating is bread, and I'm not even a bread fan!

ON the good news, for moving on Friday, the people we renting off have offered to come collect us from the hotel. They advised it would be difficult by public transport and taxi's expensive. I knew this and wasn't looking forward to transfer. We have too many bags to go by tram and bus, so it would have to be a taxi but I am glad to be spared this expense. Makes it so much easier for us, and I wasn't expecting it. There is still some doubt over October but I will work that out on Friday with them when we meet.
 

Gingergrrl

Senior Member
Messages
16,171
@RML, I don't know the details of where you are staying but can you order take-out food to be delivered from a restaurant so you can get something with protein and stay away from bread?
 

RML

Senior Member
Messages
403
To be honest, I don't know if there is any shops or other places to eat much around or how to get to them. Maybe I just don't know them but I do feel rather 'out in the sticks' here.

We had planned today on eating at the restaurant in the park (we sat out in the sun near there yesterday for a while but both were too full up from lunch after clinic to eat then) but today was raining too bad and I wasnt up for the walk today. We didn't want the toasties or pay E7 for it, I felt like leaving and going back to room, but all that was in our room was chocolate and crisps, cookies and orange juice so not much better options.

I am not on any anti carbs diet but I don't generally eat too much of them anyway. mostly been having rolls and cheese for breakie, then having the pastries and fruit for lunch, yesterday had yoghurt for lunch. Monday had chips only for dinner and some salad. Yesterday didn't have dinner, just rolls and cheese again and fruit, so today was really looking forward to omelette or something decent.My mum wanted to go into the kitchen and make the omelette or something similiar if they had no cook, she was glad to do it Ha!

Well, im gonna enjoy rest of Great British Bake off , then b12 jab time :( then get some good sleep.Tomorrow, I'm forward to getting this needle out of my arm for a few days, get a proper shower etc my hair is kinda gross now.
 

Gingergrrl

Senior Member
Messages
16,171
@RML Good luck with the food and moving! I am going to be starting B-12 injections too as soon as the box arrives from the compounding pharmacy. I do not have Lyme but have the bad MTHFR genes/methylation diagnosed by my new CFS doctor. So, I may be asking you for feedback re: the shots soon!
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
To be honest, I don't know if there is any shops or other places to eat much around or how to get to them. Maybe I just don't know them but I do feel rather 'out in the sticks' here.

If you walk 5 minutes toward the clinic, there is a shop with salads (you can take them away) and other eats. It is on the same side as the Eurovolley, set back from the road but has a large red circle on the door or the building--or somewhere visible. I think they close at 3 p.m. though. I used to get things there. It is in some kind of larger building and across from the radio or TV station.

Sushi