Discussion in 'ME/CFS Doctors' started by Valentijn, Oct 28, 2013.
Great you can get this done at home, I wish you well with this treatment.
I'm now back in Belgium, and we've decided to do my entire first week of IV antibiotics here. Things are nearly set up for the home health, but it's been quite slow in getting information passed around between the various parties. We've also been on vacation and had a couple holidays in the past two weeks, which has not been helping!
Basically there's a form which the home health care people need. I think they've been trying to get it from the GP, but are finally trying to get it from KDM's clinic now. We need to make sure Himmunitas got the request and is acting on it The home health care org and the pharmacy also need to know how the antibiotic is prepared and administered. Apparently it can be done in a few different ways. They also want the medication leaflet ahead of time, so maybe we need to find that or just get a spare one from the clinic. And finally they all need to know if I'm having a central line installed during my first visit at KDM's clinic.
So the plan is to get answers to all of those questions, while not delaying my treatment start any longer. My mom's here from the US to help take care of me while I get started, in case of bad reaction. So we really need to know pretty soon if it's going to be safe to send her home
So my fiance drove me and my mom down to Belgium yesterday, and we're staying in a hotel room through Friday morning. That way it'll be easy to get infusions at the clinic Tuesday, Wednesday, Thursday, and Friday, without having to worry that the home health care won't be ready by Wednesday. We'd initially planned for me and my mother to stay here overnight anyhow, since the fiance can't miss work today.
We're at a different hotel this time, though again in Grimbergen, which is a few minutes north of Brussels. It's very quiet and beautiful here, and no farther away from the clinic than most of the hotels inside the northern edge of Brussels.
The Hotel Abbey is pretty nice, albeit sorta like the hotel in Stephen King's "The Shining" We arrived on a holiday, when basically no one was working here and everything was dark, quiet, and deserted. Eventually someone came by to let us in, and I ventured into the completely dark lobby bathroom while my fiance checked us in. Nothing beats peeing in pitch blackness in a strange hotel! Then I was the first one to get upstairs in my mobility scooter on the elevator, and again it was very dark and spooky - so I turned on my headlights and found a light switch
The public areas are very nice and kept up. Lots of marble and such. Though no ramps getting in the front door, so there's a couple small ledges/steps. The hotel room is quite big, with lots of room for parking and turning around my mobility scooter. The beds are quite comfortable, and the bathrooms are very nice - the toilet even has it's separate little room. Oh, and the bathroom has a good bathtub with a little stool which worked perfectly for a sit-down shower. The view is also nice, as we can see the church/abbey from our window.
The room is somewhat luxurious - or it was 30 years ago. Because that's the last time that the carpet, wallpaper, and furniture were updated There are stains everywhere on the carpet (which quaintly climbs a couple inches up the wall), and the center areas have all turned dark pink while the edges and less-trafficked areas are a saner shade of brown. The furniture veneers have been scrubbed somewhat raw, and there's an ancient radio built into one of the night stands. But there is a little refrigerator (with retro veneer of course) which works wonderfully and is keeping my various meds nicely cooled.
There's no air conditioning, but a pretty good fan which is now perched on the window sill to blow in some cool morning air. Usually the lack of A/C wouldn't be a problem here, but we've had some nasty heat + nasty weather + insane humidity the past few days. Propping open the door to the room also helps in generating a cross-draft.
Continental breakfast is included, with breads (gluten), cheeses (dairy), fruits (fructose), and sliced meats (MSG/E621), so really nothing I can eat. But we'd counted on that, and brought hemp protein powder, gluten free cereal, almond milk, peanut butter, and chocolate, so I'm in good shape on the food front. There's also some burgers-and-fries joints in walking distance for my mom, if we're so inclined. And a really awesome restaurant, Het Fenikshof, is a 5-10 minute walk/scoot away, and a hotel restaurant here as well.
We managed to talk with the receptionist today and they've called a taxi company to arrange for someone to pick us up at the hotel at 12:30, so we'll have plenty of time to get to the clinic by my scheduled appointment time at 1:00pm. It takes about 7 minutes to get there, and from our current location we don't even get on the highway, which is a definite bonus. We don't know exactly when my first infusion will be done, so we'll just call another taxi at the clinic afterward and wait for it.
I'm not nervous about the infusion at all. Mostly just very relieved that the antibiotics are finally starting. It sounds like the first one, Rocephine, can cause pretty huge improvements, and has a strong anti-inflammatory effect as well. And if I have any problems with it, the hospital is across the street from the clinic
Good luck V !! so glad for you that you are starting treatment and that you have your mum with you to look after you.
Let us know how it goes - if you are able.
Take good care
Good luck too Valentijn! and keep up informed about how it goes
Sitting with bated breath until you've done your first IV.....so hoping it goes well for you, I'll pass on the hotel though!!!
I don't have a little red tricycle, but I suppose I could roll around the halls in my little red mobility scooter until I see dead people
hahahaha - send us a photo.....
Good Luck @Valentijn , so glad you finally getting started on treatment now, hope it all goes well for you!
Good luck with your treatment. And hotel stay. Fwiw, I'd avoid showering.
I was just wondering if kdm recommends a diet too. I've heard over the years that llmds in the us are recommending the paleo diet. I was just wondering what he's seeing.
Since my OI definitely worsens with infections and improves as the infection clears I was thinking I may need more testing for other infections.
Actually I just remembered that I was told to treat for Lyme with 2 supplements that I can't remember. Duh ! Having a brain would definitely help my prognosis.
Good luck and keep us updated! I did very well on IV ceftriaxone, hoping you'll reap the same benefits from the treatment as i did.
P.s. Take a look at sheraton brussels or crowne plaza in sint-joost-ten-noode, just 500m. to station brussels nord. I usually take a taxi from the hotel to the clinic but tram / bus is possible as well.
Banderol / samento ?
V - for victory!
He prescribes lots of water (2L per day) and low sugar. But nothing more complicated than that. Also probiotics.
Those, or is that the same ? sound familiar. It was a popular combo for lyme at the time it was prescribed.
I'll have to contact my dr to get the facts. Tc .. x
The cab ride was easy. He arrived on time, and it just took about 5 minutes to get to the clinic, so we'll probably schedule to leave 15 minutes before Thursday's appointment, instead of 30 minutes. It cost 19 euros for both of us to get there via taxi, and 15 euros getting back. We need another taxi on Thursday, since my fiance will be driving us all there on Wednesday and Friday. The clinic also called a taxi for us when we were ready to leave, and it arrived in 5-10 minutes.
When going in for the infusions, you go to the nurses' area and knock on the door to let them know you're there. The receptionist failed to inform us of this, so we sat in the waiting room for an hour before getting things figured out It was pretty hot there, which was doing bad things to my heart rate. We sat in the receptionist area a bit, since there's an air conditioner there.
The nurse had trouble getting my IV set up, partially because they wanted me to lie down, and I can only lie on my left side, which made for awkward positioning for her. And then my veins decided to hide, so the port was installed on my lower wrist/upper hand area, and with the line going toward my fingers. The port stays in for the 4 consecutive days that I get infusions every week, then is removed after the last infusion of the week. Hopefully the next one will end up somewhere nicer.
They mixed the Rocephine powder with saline, making a pale yellow liquid, and put it in a drip bag. That was then attached to me, with a couple little doo-dads along the line. Then I laid there for about 45 minutes while the bag dripped into the line. The bag stopped dripping if I didn't have my arm stretched out completely, so that was a bit annoying to hold that position.
While I was lying there like a beached whale, they brought an envelope with the prescriptions and necessary instructions for the home health care organization and pharmacist. So everything should definitely be ready to go at home next week
When my bag was done dripping, nurse Jan unhooked the line from the port, and apparently injected something else into me while I wasn't looking. Probably Heparin, since that's in the prescription They're going to bill us after Friday's session for the entire week, so that makes things a bit simpler.
When we got back to the hotel, my mom asked around and they gave us their menu and she can bring food up to me if necessary. So I'll probably give that a try, just to rest as much as possible. I'm feeling pretty decent, probably from the extra fluids in the drip, but I want to take it easy.
Thanks. Having gone the diet route and still being disabled with OI and pem, I'd love to see this doctor for more testing. Although quite honestly I don't know what all the testing I had told my integrative doctor. Brain fog's a bitch.
Sure avoiding my triggers stopped the reaction I get from eating these but it appears I may benefit from treating pathogens.
So far even standard antibiotic or parasite treatments make me feel horrible tho. I've had to stop multiple treatments because I couldn't function or I got the runs non stop.
Do you know what he recommends for those who can't tolerate the treatments ? I was thinking something to help detox maybe ?
Tx .. x
Ps. Not that I understand all the terminology used here but imho we're lucky that we understand so much of this. Can you imagine what newbies are thinking ?
Something he prescribed, and insurance actually paid for, is digestive enzymes. I still avoid tempting fate for the most part, but I can now eat foods that used to make me swell up, if I take an enzyme before the meal. But I do get diarrhea from the bad foods still, so I'm not eating wheat or eggs on a daily basis or anything
Did you try IV antibiotics? Those might be a lot easier on the gut. I don't know what he tries if no antibiotics are tolerated.
Cool. What's the name of the digestive enzyme that helps with swelling ? My bottom lip swells from vinegar.
I can't digest food without taking enzymes. So far enzymedica brand and creon have helped. I've become intolerant of both in the past tho so I'm rotating them. Also using papaya +seeds, mango and pineapple. Fun. Fun ..
Fwiw, Enzymedica spectrum, contains dpp-iv, etc., may help you with your 'd' from bad foods like gluten or dairy. I suspect either this or DGL have helped me recently.
I haven't tried iv antibiotics. Great idea tho.
Wishing you all the best. Tc .. x
@xchocoholic - Creon is the one I'm taking too.
@xchocoholic I took Creon too but discovered that it has several formulas--all Creon is not the same! So that is another thing to check out. Also, it is prescription--at least in the States.
You can also try a Google Site Search
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