In Belgium to see Dr de Meirleir

[Valentijn]

So the rest of this week of home infusions didn't involve any problems.

There was a different woman on Wednesday and Thursday, who didn't speak great English, but my Dutch was cooperating well enough. She was also great with talking to the pharmacy to make sure the equipment we need for next week will be delivered on a weekly basis. She was quite impressed with how helpful they were being

She added the three-way valve to my wrist set-up, which is the piece which the pharmacy would have had trouble ordering. So basically that can be turned to either let fluids in or not. Very easy to add the IV line and do the pre-saline and post-heparine injections from syringes as well. She ran the IV at the highest dripping speed both days, which was fine with me. It feels a little cold going in, but not painful or even unpleasant. But that meant that there was plenty of time to drain the extra IV saline pack, which is nice for the OI

She requested some additional items: a better box for the IV and related supplies, so she wouldn't have to dig around to find things, and disposable gloves. She didn't ask for the gloves until Thursday when I mentioned I had ME and Lyme ... no idea if that was the reason So we made an Ikea trip yesterday evening, used my disabled permit to park near the front door, and my fiance fetched a wheelchair so he could push me around for a while.

We found a perfect box arrangement - http://www.ikea.com/us/en/catalog/products/80179471/ with 4 of the boxes from http://www.ikea.com/us/en/catalog/products/00192631/ inside it, some of the small ones nested a bit in each other to keep them from sliding around:

So now everything's visible, sorted out, and easy to grab. The box isn't very sturdy, but it zips up nicely and fits under my bed for storage over the weekends while I'm not getting infused.

A different woman came today (Friday). Good English speaking, but happy to let me chat in Dutch too. I think she was a bit surprised that I wanted the catheter out today after the IV finished - she mentioned that the other patients are getting a different type of antibiotics 7 days per week. But since I'm not getting infusions for nearly 4 days in a row (95 hours - I counted ) and they have to be changed weekly anyhow, it makes sense to take it out before my 95-hour break. It's so nice to have full use of my hand and wrist again, and to take a shower!

She also is interested in teaching me to do parts of the infusion myself, and had me inject the heparin after she attached the syringe to me. I think I can even do the attaching myself, one handed, if the tube attached to my hand isn't taped down to my arm. We can probably give that a try next week.

 

[Sea]

ESR was elevated, as always: 21mm (0-15). Normal ANA and RA-latex, though CRP was at the high end of normal: 9mg/L (0-10). ...and TSH is in range: 3.71mU/L (0.27-4.2)

I was just reading through your test results again Valentijn. Your TSH is in range according to the lab that did your test, however the newer recommendations have the upper limit at 2 or 2.5. It might be worth looking into that a bit more. Also I have read that a high TSH can be associated with a high CRP.

 

[Valentijn]

In my long-winded recent updates, I realize I've forgotten to mention how I'm feeling!

Cognitively I'm doing pretty awesome. This is one way I can tell that the physical symptoms aren't part of PEM, since crashes always hit my brainz pretty hard.

I've been having some fairly intense nausea, but not every day, and not bad enough to cause upchucking or complete food avoidance. As @bertiedog suggested, ginger tea helps a lot in taking the edge off of the nausea.

I've been feeling feverish at times, usually at the same time as the nausea. Actual temperature is still well below normal.

Lymph nodes are pretty swollen, more so than usual, even when otherwise feeling okay.

Mild vertigo, especially at night when getting up to pee.

Peeing a lot at night! 2-3 times usually. But I'm also drinking a fair bit of water to help expel the remnants of the naughty little spirochetes.

Orthostatic intolerance is a lot worse than usual when standing up, though mostly not a problem while sitting with my feet up.

No diarrhea - gut and BMs are normal. Joint and muscle pains seem about the same as usual. No sensory hypersensitivity. No sleep problems, aside from staying up too late to watch Game of Thrones downloads

 

[bertiedog]

@Valentijn So glad the ginger helped. The only time it hasn't worked for me was when I started the Norovirus in January this year but I guess it would have been a miracle if it had! Glad you are not doing too badly considering. It must be weird to have a low temperature yet feel feverish. Recently I have managed to get my temperature to around 36.6 the highest for years but that's with a combination of dessicated thyroid, tiny bit of thyroxine and also Prednisolone for my adrenals but it does drop a lot lower in the late evening as my steroid runs out.

Vertigo used to destroy my nervous system, it was one of the first symptoms I ever had way back in 1979 and I kept getting it without knowing why. I don't tend to get it these days but I can get quite severe dizziness which is linked to migraine and that makes me terribly anxious too. I have just started LDN and only at 1mg I have had this feeling for several hours so its quite fresh in my mind!

Good luck with your treatment, hope it continues to go fairly well.

Pam

 

[Valentijn]

I felt very chilled yesterday evening, sorta feverish, and had to lie down. And my eyes were puffy, and lymph nodes still pretty swollen.

Didn't think I'd need my electric throw at the end of June, but I did, just to warm up Even though it was 21C (70F) inside and all the windows were closed.

 

[Nielk]

I felt very chilled yesterday evening, sorta feverish, and had to lie down. And my eyes were puffy, and lymph nodes still pretty swollen.

Didn't think I'd need my electric throw at the end of June, but I did, just to warm up Even though it was 21C (70F) inside and all the windows were closed.

Sending you warm hugs!

 

[Valentijn]

Things are still going well. It takes about 15 minutes to do the Ceftriaxone (rocephine) infusions now, when the catheter's already installed. But I have a different nurse almost every day so far

Side effects are about the same. When I get the really wiped-out feeling + feverishness, it lasts between about 3 and 12 hours. It hits in the evenings after a 3-4pm infusion, and/or on Saturday, but not every time.

My mother called the clinic to get her results from the Lyme Elispot-LTT and it came up positive with about the same values I have. She'd been reading my Horowitz Lyme book, and saw how many of her symptoms are associated with Lyme (tingling and burning feet, joint pain, cognitive issues, fatigue, sweats and chills, stiff neck, light and sound sensitivities, migrating muscle aches, GI problems, sleep disorders). She also gets worn out pretty fast.

She's going to look into getting treatment back in the US after she gets home.

 

[RML]

Sorry to hear about your mum's diagnosis too! My mum wants my brother to be tested but I doubt he will bother with it.

 

[Valentijn]

Week 3 of the ceftriaxone is done! I'm halfway through the first antibiotic

For the past two days (with two new nurses), they've been showing me how to do everything and I partially attempted it yesterday and finished things off all by myself today with the nurse supervising. Warning: the rest of this post contains tedious details of the infusing process, partially for my own edification.

Once per week, a nurse is needed to install the catheter, and hold it in place with two little strips of a one-sided sticky stuff. I couldn't do that even with two hands, as it takes a lot of training and practice. Once the catheter is in, they need to attach the little line with a three-way valve on the end. This has to be done very quickly to stop the blood from spilling out of the vein - It's a good idea to have an old towel handy for this bit. I'm not sure if there was already fluid in the line which was attached to prevent the blood from spilling into the line - I need to pay close attention when they do it again on Tuesday.

Then they cover the catheter with a big transparent band-aid/plaster which is specially designed for the purpose - it has a split on one side to go around the the catheter where it's sticking out of the hand. Once the catheter is in, they also need to attach the little line with a three-way valve on the end. Again, it take two hands, so I can't do it myself.

Once the switch is installed, I think I can do the rest, since the little line is long enough for me to firmly grip the valve between my forefinger and thumb. A blue plug has to get attached to the 3-way valve, I think by screwing it in.

A bag of antibiotics mixed with saline (mixing done by the pharmacy at the beginning of the week) and a bag of plain saline are hung from hooks on my IV stand. Then a new IV line is pulled out of its bag, and something gets screwed off and the ends get poked into each bag (little unclear on this bit). Probably good to be sure the speed-wheel on the main line and clips on the small lines going to each bag are closed

Then I should have something ready to catch the excess liquid, and open the plain saline line to let the liquid run through and clear out the air. Then the end of the IV line can be attached next to the wheel. At this point, before I'm attached to anything unwieldy, I should prepare the syringes. One gets 5-10mL of saline out a little plastic bottle looking thing, after snapping the top off by turning it. That's sucked in using a filtered needle attached to the syringe. Then put the cover back on the needle and set aside for later use.

The heparin is in a glass ampoule, so I need to grip the top with a cotton pad and snap it off. That also gets sucked into the syringe with a filtered needle. Then I open a big alcohol pad, and carry the saline syringe, the heparin syringe, and the alcohol pad over to my infusing area. The heparin needle can be removed entirely, and the heparin syringe set down so it's resting on the table with the injecting end inside the sterile alcohol pad packet.

Next the plug gets wiped off with an alcohol plug, to make sure it's sanitary. Then the saline syringe gets firmly pushed into the blue plug, and twisted if possible. Not all of the syringes will stick in the plug while doing this, so I might just have to hold it in there firmly. Then the plunger is pushed in, possibly with the palm of my hand if it doesn't stay in place by itself. The saline washes out the line and makes sure that the fluid is going into a vein and not into the surrounding tissue.

Basically it should go in very easily and quickly, and maybe feel a bit cool going in the vein. If it's slow and going into the tissues, then the catheter has slipped out of the vein and a new one needs to be inserted before injecting or infusing anything. My very first catheter slipped out on the 2nd day, and my hand got somewhat swollen overnight, which is another good way to see if a new catheter is needed. I get very mild hand-swelling any time a catheter is in, but elevating my hand a bit helps, and the swelling indicative of a catheter problem was much worse, where I couldn't curl up my fingers much at all.

Then the syringe is rotated (if necessary) and pretty much falls out at that point. Next the end of the IV line is attached to the blue plug, and screwed on. Then I open the clip on the a line, and fiddle with the speed-wheel until it's at a nice rate.

If it doesn't drip despite plenty of fluid being in the bag, then that's another indication that the catheter isn't feeding into the vein properly. Apparently some people can get a headache or dizziness or something if the fluids go into the vein too fast, but I haven't had that problem - maybe due to low blood volume. So I turn it up fairly fast. It feels cold going in, but in a nice way. If the cold doesn't feel nice, then a slower dripping speed will allow the liquid to warm up as it travels slowly down the IV line.

When the antibiotic bag is empty, its little line needs to be closed off with the clip, then the saline bag clip opened. If both clips are open at the same time, the liquid from the full bag will run into the empty bag. So close one first, then open the other. The main purpose of the saline bag is to push the rest of the antbiotics fluid from the line into the vein. But it's also a nice source of IV fluids for those with likely low blood volume issues, so I let it run until it stops dripping, if time allows.

When the saline bag is empty, or enough saline has gone through to push all of the antibiotics through, I close the clip for the saline bag's little line. Then I also push the speed-wheel all the way down to close that off as well. At that point the IV line can be unscrewed from the the blue plug. It's somewhat firmly attached, so it needs a string grip with the IV hand's thumb and forefinger to pull the IV line out of the plug with the other hand.

Then the blue plug gets wiped down with the large alcohol pad that was prepared earlier, and the also-prepared heparin syring gets inserted and plunged in. Only 2mL are supposed to go in for my current infusion, but it comes in 5-10mL ampoules, so I just watch the little lines on the syringe to see where I should stop. The heparin apparently shouldn't get inserted on the day when the catheter is getting removed, since it prevents clotting and can make the vein bleed quite a bit after removing the catheter. I found that out the hard way last week

At this point there should be a catheter, short line, 3-way valve, and blue plug attached to my hand. On the first three days of infusion, I'll then take two large cotton pads and place one under and one over the external attachments. Then I slide on my tubular mesh bandage to hold it in place, cutting out a thumb-hole if needed.

If it's the last infusing day of the week, then I need someone else to help me. We'll need 2 or 3 hands to carefully peel off the big clear band-aid/plaster holding the catheter in place, without stabbing me to death with the catheter in the process. Then I can press down firmly with a cotton pad where the catheter goes into the vein, while someone else carefull pulls it out. I hold in there for a minute (or 5 minutes if I've injected heparin), peek to make sure it's not still gushing, then the my assistant puts a normal band-aid/plaster over the vein-hole.

Then a lot of stuff goes in the trash

When I get to the three hour infusions, I'll just need a nurse to insert the catheter. I might need them to start the infusion each day as well, if they insist upon that for safety reasons - basically making sure that the liquids are getting into the vein appropriately. But after that I can handle it all myself - switching to the saline bag at the end, injecting the heparin, and disconnecting everything and re-swathing the catheter side in cotton pads.

On the last injecting day of the week my fiance should be able to help me remove the catheter. He observed closely today as the nurse did it, and should though it was something he would be able to do. So if the 3+ hour antibiotics are done before he gets home on the relevant day of the week, I'll just put the pads and tubular mesh-bandage back on until he gets home, at which point we can remove it.

 

[MeSci]

Hope you don't get brain fog, @Valentijn!

It all sounds very complicated. Good luck.

 

[Valentijn]

Hope you don't get brain fog, @Valentijn!

It all sounds very complicated. Good luck.

My cognitive function has been very good since starting the antibiotics. It partially compensates for otherwise feeling like crap sometimes after the infusions

 

[RML]

I have not yet read that long post, will do later, so sorry if my question is included in it.

You are doing 2 sets of 6 weeks IV like myself right? Will you be taking a break between them or start straight away on second lot. (Trying to work out my accommodation issues etc and how long to plan for?)

 

[Valentijn]

You are doing 2 sets of 6 weeks IV like myself right? Will you be taking a break between them or start straight away on second lot. (Trying to work out my accommodation issues etc and how long to plan for?)

Yup, 6 weeks each of rocephine (ceftriaxone) and then azithromycin. I'll have about a two week break in between because the clinic is closed for vacations after I finish the rocephine But I think there usually isn't a break, so it should take 3 months.

 

[RML]

Great thanks, Wasn't sure if would need a longer lease if break was more than few days, or maybe I'd just come home for a break if it was a week or two.

Will you need to go back to clinic again to start the second one like before ?

 

[Valentijn]

Will you need to go back to clinic again to start the second one like before ?

Yup! We'll stay for the first week again (3 days), so the pharmacy has plenty of time to get the azithromycin ready after we bring it back.

 

[Sushi]

Great thanks, Wasn't sure if would need a longer lease if break was more than few days, or maybe I'd just come home for a break if it was a week or two.

Will you need to go back to clinic again to start the second one like before ?

I don't think most people take a break. The clinic closing for vacation is what is happening for @Valentijn. Most people are there continuously for 3 months.

Sushi

 

[RML]

Thanks Sushi, was just curious how it would run, and how to approach organising.

Might be seeing u over there then at some point @Valentijn

 

[Valentijn]

Might be seeing u over there then at some point @Valentijn

I'll be at the clinic August 5th, 6th, and 7th, from 9am until around 12-1pm.

 

[RML]

Think I'm down for 4th August at 1pm, but will confirm it first it first.

 

[Valentijn]

My feverish periods seem to be getting worse. One hit yesterday around noon, and is still present about 30 hours later. Feeling very hot, unbearably so at times, and temperature is up from my normal 36.0 to 36.9 on a regular basis. Lymph nodes are pretty painful too.

I've been spending a lot of time with a pack of frozen peas on my neck, face, forehead, etc today. I also really needed to wash my hair, which I hadn't done since my catheter went in on Tuesday. But my mom and fiance didn't think I can handle the trip up the stairs and a proper shower, so I've had my first hair wash in the sink, with lots of help It worked out well though, with a high kitchen chair and a big sink. When I finished and sat back down on my bed, my heart rate was only 89. Usually it would be 110-120 after a very careful shower.