1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

In Belgium to see Dr de Meirleir

Discussion in 'ME/CFS Doctors' started by Valentijn, Oct 28, 2013.

  1. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,976
    Cornwall England
    'And then I had a double espresso' :wide-eyed::jaw-drop::p :D
     
    Last edited: Jul 6, 2014
    justy and Valentijn like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,067
    Likes:
    6,031
    Albuquerque
    I am taking both so can't really tell what is doing what. When you read about them though, they are supposed to be supporting detox in different ways.

    Here is one quote on smilax:
    http://www.livestrong.com/article/312826-benefits-of-sarsaparilla-smilax/

    And Pinella is supposed to have neurological effects--reducing brain fog, headaches...

    That is all I know...o_O

    Sushi
     
    Valentijn, SOC, merylg and 1 other person like this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    The past few days were pretty decent. I was able to make a somewhat complicated dinner by myself last night, and wasn't even feeling icky when standing up for a while. I also survived a shower pretty well today, and even threw in a shave!

    A new catheter went in today. Not much drama aside from a fair bit of blood coming out in the process :D The nurse confided that she hates putting catheters into hands, and I agreed that I hate having them there. But there's no alternatives, and it's better than nothing.

    I still feel a little woozy after the whole catheter inserting thing, but didn't have any problem shutting down the IV myself, and injecting the heparin. Though the hand wrapping can be a little tedious when doing it with one hand and trying to get it just right :rolleyes:
     
    SOC, Nielk, Hanna and 6 others like this.
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    Last night was the 2nd time in the past week that I've slept 11-12 hours. It feels niiiiice :cool: It's not something I've done at all since getting ME.
     
  5. rosie26

    rosie26 Senior Member

    Messages:
    1,048
    Likes:
    1,318
    NZ
    Sounds bliss Valentijn :D Hope you get some more treats like that.
     
    xchocoholic, merylg, MeSci and 2 others like this.
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    Week 5 of the first antibiotic is done, and just one week left! No Herxheimer reaction this week, which indicates that the major die-offs are probably done with.

    Overall I'm feeling a bit better than I was prior to starting the antibiotics. But I was feeling worse than usual at that time. Overall I think I'm currently doing better than usual cognitively, and back to about my ME-normal physically.
     
  7. lnester7

    lnester7 Seven

    Messages:
    1,243
    Likes:
    1,121
    USA
    @Valentijn what is the ETA after the antibiotic treatment??? I am looking to start that route, but I have yet to hear from somebody recovering this way. So I am following your progress attentively.
     
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    ETA?
     
  9. maryb

    maryb iherb code TAK122

    Messages:
    2,882
    Likes:
    2,012
    UK
    I thought the a/biotics were 4 week on each one and then a week off?
     
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    Nah, 6 weeks each of 2 different antibiotics. I have a two-week break in between because the clinic is closed, and I need to do my first infusion of the 2nd antibiotic there :p
     
    justy and Sushi like this.
  11. maryb

    maryb iherb code TAK122

    Messages:
    2,882
    Likes:
    2,012
    UK
    Oh I thought it was 3 different antibiotics....... don't know why.
     
  12. lnester7

    lnester7 Seven

    Messages:
    1,243
    Likes:
    1,121
    USA
    @Valentijn Estimated Time to complete your therapy??? How long before you are ok??? The reason I asked is because they say it can take as long as you been sick, I am not sure if that is truth. Does he say once you treat the Lyme ME goes away???
     
  13. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    It's three months to complete the IV antibiotics. What happens after that seems to depend on symptoms and test results. The impression I get is that a lot of people have a great deal of improvement in ME symptoms after treatment, but that there might still be milder ME present.
     
    Cheshire, AndyPandy, merylg and 4 others like this.
  14. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,893
    U.K
    Sounds great doesn't it? I have everything crossed for you. Now just trying to work out how to get that IV treatment and pay for it... being at the clinic is the best option, but housing, relocation etc is a nightmare, especially with kids to think about.
     
    Hanna, merylg and Valentijn like this.
  15. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    Still no herxing this week, so fingers crossed that I'm done with that bit :thumbsup:

    I've been feeling better than usual the past several days, and it just seems to be getting slowly better. Yesterday I wanted to go for a "walk" on my mobility scooter with my fiance, and had a lot of fun with that. I wore my Alpha Mio strapless heart rate monitor, and after getting up to about 115 getting my scooter out of the shed, I was down to about 80 after a few minutes and it stayed that low for the rest of the trip, even though I had both legs down for the entire trip, which is usually somewhat difficult for me.

    We saw one of the swan families, with three grey fluff balls. They aren't babies anymore, but still super soft and downy looking - I have to fight the urge to try to snuggle them :rolleyes:

    We also got take-out from the shopping center, and brought that home to eat it. Something I haven't mentioned much is that I'm doing a lot better eating foods that used to make me swell up for about 24 hours. Now I get very little or no swelling with small amounts, though can get some impressive diarrhea if I have too much egg white. I'm not sure if it's the antibiotics, or the enzymes, or the 4ME, or something else entirely, or a combination of things, but it's been a really big improvement regarding food tolerance.

    The past two days I've noticed that I feel very relaxed - usually this happens more when my heart rate is able to stay low, as a result of pulse pressure staying at normal levels. Today I even feel a sense of general physical well-being ... sort of not feeling "sick", even though I'm still disabled and very limited in activities. It's nice :smug:
     
  16. Sasha

    Sasha Fine, thank you

    Messages:
    8,375
    Likes:
    7,447
    UK
    So glad to hear that things are improving for you!
     
    Valentijn likes this.
  17. Hanna

    Hanna Senior Member

    Messages:
    403
    Likes:
    360
    Jerusalem, Israel
    @Valentijn - must be the neuro calming effect of the ceftriaxone working. I had the same bonus with minocycline.
     
    Valentijn likes this.
  18. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,893
    U.K
    Valentjin, I am so happy for you - and hopefully not too many steps behind!!
     
    Valentijn likes this.
  19. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,500
    Likes:
    9,614
    Amersfoort, Netherlands
    I'm now done with my first round of IV antibiotics :smug:

    Tuesday was a bit rough with getting the cannula inserted. It took 3 tries, and a lot of pain. I have very naughty veins :cautious: And I'm calling it a "cannula" now instead of "catheter". It looks like the 2 terms get used interchangeably 95% of the time, but "cannula" doesn't conjure images of wee the same way "catheter" does.

    It's been hot here, which means more swelling ... and I'm already prone to swelling due to the ME and the cannula. So I was careful about elevating and icing my hand and wrist all week to keep it under control.

    This morning I think I managed to hit a vein during my B12 intramuscular injection. It went fairly well - little pain or resistance - until I removed the needle and a ton of blood came with it :eek: I managed to catch the forward rush with the large band-aid/plaster I had ready right before it hit my duvet cover, and I then pressed said band-aid/plaster on the injection site until it was ah, at blood-containing capacity. Then held some cotton strips pressed firmly against it for several minutes until the flow stopped, mopped up the blood off my leg, and left a clean band-aid/plaster on it just in case.

    The IV this afternoon was pretty easy and uneventful. I then peeled off the stickers and tapes holding the cannula in place, taped cotton over the infusion site, and then pulled out the cannula and applied pressure for a few minutes. Very little blood :rolleyes:

    Still no drastic improvements, but some minor and peripheral ones. A very noticeable change during the present heat wave is that the heat isn't killing me like it did just weeks ago. And it's quite a bit hotter now than it was then ... 28.5C inside, versus 24 or 25 previously. And humidity is worse now too ... 78% currently, versus 65-75% previously. So maybe heat regulation is working better now, though that could be due to the IV fluids even if it is a relatively small amount (880mL per week).

    Cognitive function is still doing quite good. Dutch is still rough, but at least I can handle normal interactions very well. Heart rate is pretty bad the past couple days, largely due to the heat, but otherwise seems to be doing better in general. I don't feel the need to lay down at all the past couple weeks. I haven't been pushing PEM limits at all, so can't say anything on that account.

    So now I get two weeks with no cannula sticking out of my hand :thumbsup: Hopefully that'll give my hand-veins some time to recover, and make it easier to find good spots for the 2nd round of IV antibiotics.
     
    bertiedog, Hanna, Helen and 11 others like this.
  20. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,893
    U.K
    You really are doing so well Valentjin - you seem to cope with it all so fantastically - I don't think I would be so happy with all that blood spurting out of me.

    This virus and chest infection I am still recovering from reminds me of how brave I will need to be for treatment - have found bravery hard the past week, but you seem to have it!

    Take care, and enjoy the break!
    Justy.
     
    Hanna, maryb, MeSci and 5 others like this.

See more popular forum discussions.

Share This Page