In Belgium to see Dr de Meirleir
- Thread starter Valentijn
- Start date
Everything on the underside of my arm or on a bendy spot was eventually irritating or bruised madly. My hand was OK but inconvenient.
Hopefully as you get more fluids, your veins will be easier to find too and you will find your own magic spot! (And I totally didn't mean that to sound as dirty as it does!)
Glad things are going well for you overall...just curious, does your mom have symptoms, or if the test just to see if she has been exposed?
Hopefully as you get more fluids, your veins will be easier to find too and you will find your own magic spot! (And I totally didn't mean that to sound as dirty as it does!)
Glad things are going well for you overall...just curious, does your mom have symptoms, or if the test just to see if she has been exposed?
My mom has similar food intolerances, but no other symptoms. Mostly we were just bitten by the same ticks for several years, and tend to have similar reactions to things, so we want to be sure she's not in a pre-ME stage or anything.
A central line sounds like a pain in the ass to wear but i guess it's necessary to save time and cost at the clinic.
I had my IV's placed with a butterfly needle on the top of my hand, i takes a bit more time to apply for every infusion but it's so much more comfortable. No pain, no infections, no drainage - at least with the ceftriaxone. The IV azithromycin on the other hand was very harsh on the small veins and caused mild phlebitis.
I had my IV's placed with a butterfly needle on the top of my hand, i takes a bit more time to apply for every infusion but it's so much more comfortable. No pain, no infections, no drainage - at least with the ceftriaxone. The IV azithromycin on the other hand was very harsh on the small veins and caused mild phlebitis.
All good news. Its a great relief that you will be able to shake your fist at people again soon--this is an essential human function!
Day 4 (Friday) of IV rocephine went fine. The catheter was removed, I tried to bleed for a few minutes, eventually stopped, and got a cute little bandaid/plaster. We got the bill for the entire week, which was 160 euros. So 40 euros per IV treatment at KDM's clinic, including the drug, the IV equipment, and repeated catheter insertion attempts. It costs 100 euros per hour with the home health care org in the Netherlands, so we're curious to see how they break down the costs.
We checked out of the hotel prior to going to the clinic. The usual check out time is 10:30, but since they close down for the weekend and don't have to check anyone in on Fridays, they were happy for us to check out any time before 2pm. While checking out, the receptionist chatted with my mother, and was very interested in Lyme because he'd just been bitten by something he didn't get a look at, and had a rash. So we strongly advised him to get to his doctor ASAP since standard procedure is a week or two of oral antibiotics, which can save a ton of trouble down the road. He gave us a nice box of chocolates his brother produces commercially
The ride home was a pain due to road construction near Antwerp. And there were horrible drivers, maybe in honor of Friday the 13th. One work truck tailgated a car that merged in front of him, then he tried to side-swipe the car when it merged directly in front of us.
I started feeling crappy yesterday, but I'm not sure if it's a crash or a reaction to Lyme (or other bacteria) being brutally murdered. It doesn't feel quite like a crash. I'm very wiped out, but more nauseous than usual, and pretty clear-headed. It's hard to explain, but basically some purely flue-like symptoms are more intense, while also feeling more healthy and vigorous. So I both feel like crap and want to take it easy and lay down a lot, but I also feel good at the same time.
So the most likely option are that either it's not a crash, and just due to the antibiotics, or it's a crash alleviated by having gotten IV fluids. But I've been a bit feverish feeling according to my fiance and mother, which doesn't happen to me during a crash. So I think it's the antibiotics doing their thing
The home health care is 100% set up and ready to go. While making a potty-stop at a gas station on the way home, my fiance got an email from the pharmacy saying it would take 6 weeks to get a part for the IV line. We found that a bit mind-boggling, since the part didn't sound like anything on the prescription. Instead of going straight home, we stopped by the pharmacy so my fiance could talk directly with them about it, and show them photos of my IV setup from the clinic.
It turns out that it wasn't a part prescribed by the doctor, but one that the home health care org was insisting on having. Basically a different type of catheter where a short tube sticks out and the IV bag's tube is attached to that instead of directly to the catheter. It means they don't directly mess with the catheter as much, so the needle isn't getting joggled around and less pain and vein issues as a result. The short tube gets taped to the forearm to keep it out of the way without restricting movement.
So the fiance then called the home health care org before they closed for the weekend, and explained that waiting 6 weeks was simply not an option since we have to continue the IV on Tuesday, and that we couldn't use their services if that was required. They didn't want to lose a customer, so they're bringing the part themselves, even though that's a bit unorthodox.
The insurance still wants "more information", though they've already said in writing (email) that they'll cover it. And if they back-track, we'll fight them for it. Home health care costs will be about 1500 euros (maybe up to 2000) for the first antibiotic (30-60 minutes, 4 times per week for 5 weeks), and at least 5000 euros for the 2nd antibiotic (3+ hours, 3 times per week for 5 weeks). Hopefully we can get the insurance directly billed at some point, or quickly reimbursing us. If not, my parents will help out until we get reimbursed.
My mother is scheduled to fly home on Tuesday, though the plan has always been to reschedule that if I'm doing very poorly in reaction to the antibiotics and/or Lyme kill-off. Right now I'm not doing well, but I can feed and water myself so not doing too badly either. So if I get worse today, maybe she'll be staying, but if I stay about the same or start doing better she'll fly home. Then if things do get much worse, she can fly back to babysit me
We checked out of the hotel prior to going to the clinic. The usual check out time is 10:30, but since they close down for the weekend and don't have to check anyone in on Fridays, they were happy for us to check out any time before 2pm. While checking out, the receptionist chatted with my mother, and was very interested in Lyme because he'd just been bitten by something he didn't get a look at, and had a rash. So we strongly advised him to get to his doctor ASAP since standard procedure is a week or two of oral antibiotics, which can save a ton of trouble down the road. He gave us a nice box of chocolates his brother produces commercially
The ride home was a pain due to road construction near Antwerp. And there were horrible drivers, maybe in honor of Friday the 13th. One work truck tailgated a car that merged in front of him, then he tried to side-swipe the car when it merged directly in front of us.
I started feeling crappy yesterday, but I'm not sure if it's a crash or a reaction to Lyme (or other bacteria) being brutally murdered. It doesn't feel quite like a crash. I'm very wiped out, but more nauseous than usual, and pretty clear-headed. It's hard to explain, but basically some purely flue-like symptoms are more intense, while also feeling more healthy and vigorous. So I both feel like crap and want to take it easy and lay down a lot, but I also feel good at the same time.
So the most likely option are that either it's not a crash, and just due to the antibiotics, or it's a crash alleviated by having gotten IV fluids. But I've been a bit feverish feeling according to my fiance and mother, which doesn't happen to me during a crash. So I think it's the antibiotics doing their thing
The home health care is 100% set up and ready to go. While making a potty-stop at a gas station on the way home, my fiance got an email from the pharmacy saying it would take 6 weeks to get a part for the IV line. We found that a bit mind-boggling, since the part didn't sound like anything on the prescription. Instead of going straight home, we stopped by the pharmacy so my fiance could talk directly with them about it, and show them photos of my IV setup from the clinic.
It turns out that it wasn't a part prescribed by the doctor, but one that the home health care org was insisting on having. Basically a different type of catheter where a short tube sticks out and the IV bag's tube is attached to that instead of directly to the catheter. It means they don't directly mess with the catheter as much, so the needle isn't getting joggled around and less pain and vein issues as a result. The short tube gets taped to the forearm to keep it out of the way without restricting movement.
So the fiance then called the home health care org before they closed for the weekend, and explained that waiting 6 weeks was simply not an option since we have to continue the IV on Tuesday, and that we couldn't use their services if that was required. They didn't want to lose a customer, so they're bringing the part themselves, even though that's a bit unorthodox.
The insurance still wants "more information", though they've already said in writing (email) that they'll cover it. And if they back-track, we'll fight them for it. Home health care costs will be about 1500 euros (maybe up to 2000) for the first antibiotic (30-60 minutes, 4 times per week for 5 weeks), and at least 5000 euros for the 2nd antibiotic (3+ hours, 3 times per week for 5 weeks). Hopefully we can get the insurance directly billed at some point, or quickly reimbursing us. If not, my parents will help out until we get reimbursed.
My mother is scheduled to fly home on Tuesday, though the plan has always been to reschedule that if I'm doing very poorly in reaction to the antibiotics and/or Lyme kill-off. Right now I'm not doing well, but I can feed and water myself so not doing too badly either. So if I get worse today, maybe she'll be staying, but if I stay about the same or start doing better she'll fly home. Then if things do get much worse, she can fly back to babysit me
@Valentijn
oh the clear head sounds lovely....
sorry about the other bit though, I suppose something was expected if the blighters are dying - I love saying that -
good that your mum is around in case and is flexible.
Being able to make food and drink are the 2 biggies - but even so when you feel really sh*t its nice to have someone around anyway.
Glad the homecare are starting so you're good to go.
oh the clear head sounds lovely....
sorry about the other bit though, I suppose something was expected if the blighters are dying - I love saying that -
good that your mum is around in case and is flexible.
Being able to make food and drink are the 2 biggies - but even so when you feel really sh*t its nice to have someone around anyway.
Glad the homecare are starting so you're good to go.
Yeah, things got worse as the day went on, and I'm feeling really damned sick now. Though still clear-headed But it's looking like my mother will be staying for an extra week or two.
She weeded the entire garden today, and they went out and bought a little rose, and couple fuchsia's, and some bright and cheerful annuals to put in the long-empty pots and in the empty spots around the garden
But it's looking like my mother will be staying for an extra week or two.She weeded the entire garden today, and they went out and bought a little rose, and couple fuchsia's, and some bright and cheerful annuals to put in the long-empty pots and in the empty spots around the garden
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Good luck with your treatment @Valentijn and thanks so much for the write up on your treatment. I hope you will soon feel not so sick and unwell.
Take Care
Pam
Take Care
Pam
@Valentijn
Thanks for the write-up! I know what you mean about feeling worse and better at the same time. I am getting that too. Confusing--some things feel worse and some better. There are some herbals (Cowden) that seem to help with detoxing whatever it is that needs detoxing. If you are interested, let me know.
Great to have a Mom like that--go good Moms!
Sushi
Thanks for the write-up! I know what you mean about feeling worse and better at the same time. I am getting that too. Confusing--some things feel worse and some better
. There are some herbals (Cowden) that seem to help with detoxing whatever it is that needs detoxing. If you are interested, let me know.Great to have a Mom like that--go good Moms!
Sushi
I just finished my first home IV antibiotics infusion
The pharmacy called that everything was ready, so my fiance picked it up on his way home, since he was planning to be here for the first infusion due to possible language issues. It was a big box full of lots of stuff ... I haven't even looked at it all yet
We immediately put the Ceftriaxone (Rocephine) IV saline solution in the fridge, and the heparin, but kept one bag out to warm up a bit since we'd be using it soon. Basically it lasts 10 days in the fridge in an IV saline bag, or two days at 25 degrees Celsius.
The nurse, Gerri, was scheduled to arrive between 2pm and 4pm, and got here around 3:45pm. She speaks a decent amount of English, and is very nice and experienced. She rifled through the box to look for what she needed, and suggested we remove a painting from above my bed in the living room, and use the hook to hang a clothes hanger for the IV bags to dangle from.
She asked me where a good spot is for the IV catheter, and agreed that my forearm was pretty useless. My hand veins were cooperative, so it's now near the same spot that it was last week. I'm not doing a lot of bending with my wrist due to where the needle is, but have quite good range of motion with it still. She put the usual big-sticky-pad over it to hold the catheter securely in place, and a couple pieces of tape over the catheter entry port thing.
The "Y" part they wanted connects two IV bags to a single tube running down to my IV catheter. She closed both bag lines initially, then ran plain saline down to the end of the line to get the air out, and let some build up in the big cylinder thing near the top. She attached the main tube to my catheter then - I think she meant to insert a self-closing plug into the catheter immediately, but forgot and did the saline bags first. She then closed off the plain saline line, and opened the Ceftriaxone line.
It took about half an hour for the Ceftriaxone bag to empty, and then she closed that line and opened up the plain saline line again, to push the last of the Ceftriaxone into my body instead of leaving it in the IV line and throwing it out (and maybe a little extra saline just for fun). After that she had to insert the plug, which involved a bit of bleeding, but she caught it all with a big cotton pad. Now that the plug is in, I won't bleed anymore ... when a line is attached, it opens to let liquids in, and when there's no line attached it stays firmly closed.
Then she put another big cotton pad over the catheter and surrounding area, and put a really cool bit of stretchy material over my hand to hold it in place. Apparently it's called a mesh bandage, and the brand I have is Bandafix. It's sooo much nicer than having my hand mummified in gauze. My finger motion isn't restricted at all now, and it's cooler and less tight. Also easily reusable. Here's a generic photo from teh internetz:
So then she cleaned up the IV bags and tubs and wrappings, then got the heparin ready. Basically the pharmacy put it in bigger doses than needed (10mL?), since it comes in ampules of the same size. But we only need 5mL? after the infusion, so she just injected it halfway after pulling back my mesh bandage and the cotton pad.
My fiance went out to pick up a rack for hanging IV bags from. It's rented for free, with the bill going straight to my insurance So that'll make things faster and easier tomorrow, in addition to not needing to insert a needle again until next week.
Due to rotating schedules, it won't be the same nurse coming every day, though they will come during the same time slot, somewhere from 2pm to 4pm. They're showing me how to finish up the infusion myself, so that by the time I start on the 3+ hour Azithromycine infusions, I'll be able to switch to plain saline at the end, close everything down, and self-inject the heparin. Then they'll just come by to get things started and not have to sit around for three hours to wait for me to finish.
The pharmacy called that everything was ready, so my fiance picked it up on his way home, since he was planning to be here for the first infusion due to possible language issues. It was a big box full of lots of stuff ... I haven't even looked at it all yet
We immediately put the Ceftriaxone (Rocephine) IV saline solution in the fridge, and the heparin, but kept one bag out to warm up a bit since we'd be using it soon. Basically it lasts 10 days in the fridge in an IV saline bag, or two days at 25 degrees Celsius.
The nurse, Gerri, was scheduled to arrive between 2pm and 4pm, and got here around 3:45pm. She speaks a decent amount of English, and is very nice and experienced. She rifled through the box to look for what she needed, and suggested we remove a painting from above my bed in the living room, and use the hook to hang a clothes hanger for the IV bags to dangle from.
She asked me where a good spot is for the IV catheter, and agreed that my forearm was pretty useless. My hand veins were cooperative, so it's now near the same spot that it was last week. I'm not doing a lot of bending with my wrist due to where the needle is, but have quite good range of motion with it still. She put the usual big-sticky-pad over it to hold the catheter securely in place, and a couple pieces of tape over the catheter entry port thing.
The "Y" part they wanted connects two IV bags to a single tube running down to my IV catheter. She closed both bag lines initially, then ran plain saline down to the end of the line to get the air out, and let some build up in the big cylinder thing near the top. She attached the main tube to my catheter then - I think she meant to insert a self-closing plug into the catheter immediately, but forgot and did the saline bags first. She then closed off the plain saline line, and opened the Ceftriaxone line.
It took about half an hour for the Ceftriaxone bag to empty, and then she closed that line and opened up the plain saline line again, to push the last of the Ceftriaxone into my body instead of leaving it in the IV line and throwing it out (and maybe a little extra saline just for fun
). After that she had to insert the plug, which involved a bit of bleeding, but she caught it all with a big cotton pad. Now that the plug is in, I won't bleed anymore ... when a line is attached, it opens to let liquids in, and when there's no line attached it stays firmly closed.Then she put another big cotton pad over the catheter and surrounding area, and put a really cool bit of stretchy material over my hand to hold it in place. Apparently it's called a mesh bandage, and the brand I have is Bandafix. It's sooo much nicer than having my hand mummified in gauze. My finger motion isn't restricted at all now, and it's cooler and less tight. Also easily reusable. Here's a generic photo from teh internetz:
So then she cleaned up the IV bags and tubs and wrappings, then got the heparin ready. Basically the pharmacy put it in bigger doses than needed (10mL?), since it comes in ampules of the same size. But we only need 5mL? after the infusion, so she just injected it halfway after pulling back my mesh bandage and the cotton pad.
My fiance went out to pick up a rack for hanging IV bags from. It's rented for free, with the bill going straight to my insurance
So that'll make things faster and easier tomorrow, in addition to not needing to insert a needle again until next week.Due to rotating schedules, it won't be the same nurse coming every day, though they will come during the same time slot, somewhere from 2pm to 4pm. They're showing me how to finish up the infusion myself, so that by the time I start on the 3+ hour Azithromycine infusions, I'll be able to switch to plain saline at the end, close everything down, and self-inject the heparin. Then they'll just come by to get things started and not have to sit around for three hours to wait for me to finish.
Thanks for the report again @Valentijn . Did you start to feel better after the last round or do you still feel like s..t!
BW
Pam
BW
Pam
I feel good after the infusions, probably due to the extra saline fluids. Last week I did infusions from Tuesday through Friday, felt good for those, and then started feeling horrible on Saturday. Basically a lot of nausea and a strong desire to lie down and do nothing. I started feeling slightly better again yesterday (Monday) afternoon, but still have OI problems acting up.
So I'm still doing a bit worse than usual, likely due to a herximer reaction as the Lyme bacteria starts to die off. The nausea is really the worst part so far. No diarrhea issues yet.
So I'm still doing a bit worse than usual, likely due to a herximer reaction as the Lyme bacteria starts to die off. The nausea is really the worst part so far. No diarrhea issues yet.
@Valentijn Hope that soon settles, I hate feeling nauseous. Have you tried some ginger tea to see if that helps?
Pam
Pam
@Valentijn
you see this is where I'd be useless, finishing it off myself, my god I panic as soon as the IV drip gets anywhere near the end,I have to have a nurse standing by the bed ready to spring into action I'm such a wuss I know... I just couldn't do that stuff myself.
I have to say though that even my friends are amazed that I can do the b12 and magnesium injections myself but I think that's my limit.
Glad its got going at home for you anyway, fingers crossed the week isn't too bad.
you see this is where I'd be useless, finishing it off myself, my god I panic as soon as the IV drip gets anywhere near the end,I have to have a nurse standing by the bed ready to spring into action
I'm such a wuss I know... I just couldn't do that stuff myself.I have to say though that even my friends are amazed that I can do the b12 and magnesium injections myself but I think that's my limit.
Glad its got going at home for you anyway, fingers crossed the week isn't too bad.
Maybe I'll give it a try ... I still have a nice ginger tea in the cupboard which I've been avoiding for a few years because tea makes me pee too much. But it's a good time to be peeing, while on the antibiotics
Lemon balm/Melissa officinalis (I make a tea with it)
Cannabis (maybe CBD oil would work)
Anticholinergic drugs, e.g. sedating antihistamines and I think some travel sickness pills. You'd have to check compatibility with what you're on though.
Things that have been prescribed for my past nausea have been USELESS. One that they gave patients on my ward in hospital in 1996 actually made people throw up!
Looking back at the dates, it took exactly 6 weeks for us to get the home IV service set up after the appointment were everything was discussed with KDM and the basic plan described to us.
The full prescriptions weren't written out until June 5th, about 4 weeks after the appointment. This resulted in quite a bit of delay for the pharmacy and home health care org, since they both really needed that info before they would commit to anything. I'm not sure if it's possible to get the prescriptions faster, or if it doesn't happen until the home health care org starts communicating with the clinic directly.
Another significant delay was in figuring out how to get the home health care set up. In the Netherlands, you can contact the local health service, or check online to see who they recommend. I'm not sure how to get a basic list of licensed groups, but that would also be useful.
We also had some delay because we wanted to contact the health insurance company to inquire how they wanted us to do it (at the hospital or at home), and ensure they'd cover the expenses. While I do think that's a good idea to discuss those things with them, I wouldn't wait for their reply to move ahead with the other aspects. In the Netherlands, the IV home treatment is covered under "hospital care" by all insurance policies. To save time, it's probably best to start treatment ASAP, then wrangle with the health insurance when they get around to replying.
Another delay was due to the home health care and/or pharmacy wanting my GP (huisarts) to fill out a form. KDM's clinic should be filling it out, especially if your GP isn't involved at all with your ME/CFS care.
Something else which might help is asking the home health care org how they like to have their IVs set up, and any parts you'll need to administer them. Ours wanted a "Y" junction so that plain saline could be used in addition to the Ceftriaxone mixture, and the pharmacy would have had a long delay in getting them, especially since we didn't find out about it until a few days before home IV was scheduled to start.
Additionally, and more generally, it can help to see what prescriptions are available in your country. http://medicijnkosten.nl/ works quite well for the Netherlands, so I was able to see very early on that I can't get IV azithromycine here at all. So we've arranged to get in Belgium when the time comes, and bring it back with us. Pharmacies can also import some items, but insurance won't cover it and it can be a bit slow and more costly due to the fees of setting that up. So the hydroxoB12 high-dose injections could be another good one to get in Belgium.
The full prescriptions weren't written out until June 5th, about 4 weeks after the appointment. This resulted in quite a bit of delay for the pharmacy and home health care org, since they both really needed that info before they would commit to anything. I'm not sure if it's possible to get the prescriptions faster, or if it doesn't happen until the home health care org starts communicating with the clinic directly.
Another significant delay was in figuring out how to get the home health care set up. In the Netherlands, you can contact the local health service, or check online to see who they recommend. I'm not sure how to get a basic list of licensed groups, but that would also be useful.
We also had some delay because we wanted to contact the health insurance company to inquire how they wanted us to do it (at the hospital or at home), and ensure they'd cover the expenses. While I do think that's a good idea to discuss those things with them, I wouldn't wait for their reply to move ahead with the other aspects. In the Netherlands, the IV home treatment is covered under "hospital care" by all insurance policies. To save time, it's probably best to start treatment ASAP, then wrangle with the health insurance when they get around to replying.
Another delay was due to the home health care and/or pharmacy wanting my GP (huisarts) to fill out a form. KDM's clinic should be filling it out, especially if your GP isn't involved at all with your ME/CFS care.
Something else which might help is asking the home health care org how they like to have their IVs set up, and any parts you'll need to administer them. Ours wanted a "Y" junction so that plain saline could be used in addition to the Ceftriaxone mixture, and the pharmacy would have had a long delay in getting them, especially since we didn't find out about it until a few days before home IV was scheduled to start.
Additionally, and more generally, it can help to see what prescriptions are available in your country. http://medicijnkosten.nl/ works quite well for the Netherlands, so I was able to see very early on that I can't get IV azithromycine here at all. So we've arranged to get in Belgium when the time comes, and bring it back with us. Pharmacies can also import some items, but insurance won't cover it and it can be a bit slow and more costly due to the fees of setting that up. So the hydroxoB12 high-dose injections could be another good one to get in Belgium.