In Belgium to see Dr de Meirleir

[Valentijn]

I've continued to do quite well since my last post 12 days ago. In fact, I've been feeling downright healthy and energetic the past few days. I've been slowly increasing how much work I do around the house (tidying, dishes, cooking, laundry, light cleaning, gardening, going upstairs and back down), and I'm not suffering for it.

My legs were a bit sore up until a couple days ago, probably due to the extra activity, but no PEM at all. My back still gets a bit sore when standing still for a while (cleaning out the espresso machine), but it passes quickly, and the only things aching are the muscles I have been using. You know, like wot happens to normal folk!

Currently I'm doing about 3x as much around the house as I was prior to starting IV antibiotics. Sleep is good, no ME pain, no brain fog, no sleep problems. I'm still being careful ... letting my muscles recover from additional activities before adding even more. But definitely making progress. I think I'm in remission, and I hope it lasts!

Heart rate is also doing a lot better. Getting my mobility scooter out the shed for a long "walk" still sends it up to 120, but then it's back to 80 within a minute of sitting in it instead of taking 5 or 10 minutes to recover. So even though I'm not back to "healthy", I seem to be recovering normally from activities.

As expected, I don't need CBT or GET to work through any deconditioning at this stage, now that my body is capable of normal responses to exertion. It feels great psychologically to be able to safely do more around the house, and be less of a burden on the fiance who works full time, advocates on my behalf with various entities part time, and takes care of the house part time. At least I can put a dent into one of his part-time jobs It also feels good physically now to carefully stretch the physical boundaries of my muscles and lungs, etc.

I start my next round of IV antibiotics (azithromycin) in 6 days. It should be a lot easier to handle than the last round was, now that I'm somewhat more functional.

 

[Indigophoton]

Wow, that's amazing Valentijn, good for you!

 

[MeSci]

As expected, I don't need CBT or GET to work through any deconditioning at this stage, now that my body is capable of normal responses to exertion. It feels great psychologically to be able to safely do more around the house, and be less of a burden on the fiance who works full time, advocates on my behalf with various entities part time, and takes care of the house part time. At least I can put a dent into one of his part-time jobs It also feels good physically now to carefully stretch the physical boundaries of my muscles and lungs, etc.

I know what you mean about not needing CBT or GET when our bodies are working well. It's more like "There's no stopping me - whoopeee!!!!"

I also know that lovely feeling of being able to stretch. My leaky-gut diet and supplements did that for me. Previously (a) the muscles seemed to be wrapped in fat so didn't work and (b) I tended to get cramp when I stretched. To be able to lie in bed on waking and stretch the limbs and torso is a real pleasure.

Amazing progress. I know you're a pragmatist and prepared for setbacks, but maybe they won't come...?

 

[Valentijn]

Amazing progress. I know you're a pragmatist and prepared for setbacks, but maybe they won't come...?

I'll enjoy it for as long as it lasts ... hopefully forever!

 

[snowathlete]

I'll enjoy it for as long as it lasts ... hopefully forever!

I really hope it's forever. Brilliant news.

 

[Riverview]

Fabulous news Valentijn . How long will you stay at the clinic? I'm trying to work out who to look out for when I start treatment on the 11th Aug.

 

[maryb]

@MeSci
I stretched in bed the other morning, very rare occurrence, so enjoyable, I later on had the most excruciating pain in my calf and realised I'd pulled a muscle.....I had to laugh really.
@Valentijn
your improvement is so encouraging. Hope you do as well on the azith

 

[bertiedog]

Congratulations @Valentijn, you have done so well and been very brave. Keeping my fingers crossed for you that you will continue to feel so well.

Pam

 

[Valentijn]

Fabulous news Valentijn . How long will you stay at the clinic? I'm trying to work out who to look out for when I start treatment on the 11th Aug.

I'll just be there for the week before you arrive. Then we'll take the rest of the azithromycin I need back to the Netherlands, since the pharmacy can't import it - but will happily prepare it for us

 

[Gingergrrl]

@Valentijn, I am sooooooooooooooooo happy for you, I could cry. You have worked so hard to get the right treatment and deserve all the good things that are coming your way. You are an inspiration to me not to give up.

 

[Valentijn]

@Valentijn, I am sooooooooooooooooo happy for you, I could cry. You have worked so hard to get the right treatment and deserve all the good things that are coming your way. You are an inspiration to me not to give up.

Now we're into the first battle of the War With the Skanky Insurance Company They've denied our first claim for the home health care bill, despite more-or-less pre-approving it in earlier correspondence, and expressing a preference that I get home health care instead of going to the hospital for infusions.

The denial arrived via email at 4am, so sounds like an automatic initial rejection of the claim rather than anything meaningful. But still, it means a delay, so we have to borrow money from my parents pending the resolution. Otherwise we'd run out of money before starting the 2nd half of treatment, which is probably what the insurance company is hoping for. I wonder if courts have automatic punitive damage here for insurers mucking around with denying legitimate claims ...

 

[Gingergrrl]

@Valentijn That sucks but you are great advocate and know you will get it resolved. Don't let the insurance company deny you the care that you need.

 

[Helen]

@Valentijn , I am really happy for you and hope that the progress will continue and that the problem with the insurance company will resolve soon.

How are you looking upon your diagnose today? ME or "just" infections? Do you have any idea so far?

 

[Valentijn]

How are you looking upon your diagnose today? ME or "just" infections? Do you have any idea so far?

Both - Lyme usually doesn't include PEM. In fact, Horowitz recommends gentle exercise in his book

But ME/CFS is generally regarded as being triggered by a variety of infectious agents anyhow, so that certainly fits into the ME model. And Lyme can get into the CNS and/or joints and/or muscles, so it is possible that it's somehow causing PEM and other ME symptoms directly. Or maybe various infections are causing the same symptoms by getting into the same tissues?

 

[maryb]

@Valentijn
nice to wake up to e-mails like that...not. They truly are b**trds some of these insurance companies.
Don't let it stress you too much. You can only do what you can do. Right now you have to concentrate on keeping your health moving forward.and reeeeelax.

 

[RML]

So happy for you with your improvements @Valentijn ! Also, being a few steps behind you in this process, it has always been great to follow your journey with your in depth accounts here. It is good to hear of your benefits especially as earlier in week I was getting a little freaked and apprehensive about going there and doing this. Probably just last minute nerves, and then I read a blog post stating dangers of IV Rocephine and warning about losing your gallbladder as a common complication, that had me really freaked. So it is nice to read the 'good' stories as a balance to the bad ones!

 

[Helen]

Both - Lyme usually doesn't include PEM. In fact, Horowitz recommends gentle exercise in his book

But ME/CFS is generally regarded as being triggered by a variety of infectious agents anyhow, so that certainly fits into the ME model. And Lyme can get into the CNS and/or joints and/or muscles, so it is possible that it's somehow causing PEM and other ME symptoms directly. Or maybe various infections are causing the same symptoms by getting into the same tissues?

Sorry for late response, but have had a lumbar puncture with some problem. I have had the same experience like you, so yes from me as a plausible answer to your question. I had no PEM after antibiotics and a feeling of being pretty well. (Then a relapse and now waiting for proper treatment (IV abx).

I think this experience raizes the question if it is ME at all, though earlier diagnosed with ME/CCC, but time will tell. As the genetic vulnerability for methylation issues among PWME isn´t scientifically explored yet, I think this piece of the puzzle is missing too, and many others... Again, it is really good to hear about your progress - all the best!

 

[Valentijn]

And now I'm back in Brussels, to start my 2nd course of IV antibiotics. I'll be here for 3 days (the first week) since we have to take the antibiotics back to the Netherlands and deliver them to the pharmacy so that they can prepare them for us. We arrived the day before treatment starts, since it starts at 9am and that would mean getting up around 5am to make sure we'd get there on time. No thanks!

We're staying at the Brussels Airport Sheraton. It's right off the highway, so that was nice and fast, but the front entrance is directly across the street from the entrance to the airport, and the section for dropping off passengers is right before it. So slow getting up to the hotel, then a small place to pull off where cars can stop to check in and such ... though not really enough room for all the cars that wanted to be there. We pulled into a big spot with "E" in the middle ... no idea if that was a proper place to park, so I put my handicapped placard just in case

My fiance got us checked in, and requested someone help us bring our crap in, since he'd be pushing me on the wheelchair, and we have two backpacks (okay, mine's a mini-suitcase) and a small travel refrigerator. So the bellboy brought our stuff up to the room, which worked out nicely because neither of the room keys worked, so he went to get new ones while my fiance went to park. The bellboy made it back first, so opened the door and rolled me in. He was very helpful in general

There was a baby cot/crib in the room, so I also asked if that could be removed since we don't need it! He arranged that after he left, and a maid came by a little later to remove it. Because of the keys not working and the extra cot, we think there might have been a little mix-up with the room we were given But it's all working out fine now ... sound-proofed, panoramic view of the airport and Brussels beyond, A/C, mini-bar with space for our meds, nice muted and natural looking decor, a comfy bed, and a nice bathroom.

The Sheraton has its own parking area, so it's only 30 euros per day instead of 60. But that's about the same as what it would cost if we stayed in the center of Brussels, where the other hotels are, except then we'd have the traffic to deal with as well.

We'll probably get room service tonight, since I got a bit worn out while packing my stuff this morning ... heart rate was 140 briefly before getting into the car!

 

[RML]

That A/C sounds bliss, I feel like I'm in an oven or sauna in my room. I guess you enjoyed the 2 week break with nothing in your arm, right? I'm finding it pretty annoying and a bit sore. I'm finding it hard to imagine 3 months with my new arm accessory all bandaged up.

 

[maryb]

@Valentijn
hotel sounds nice... I love the fact the windows are so sound proof and you can see all the planes, but hear nothing. Pity its not nearer the clinic, I think KdM should re-locate
So you didn't need your travel refrigerator? I've been looking at them today. they look pretty handy to have for smaller hotels that don't have fridges/