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In Belgium to see Dr de Meirleir

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

  1. RML

    RML Senior Member

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    Sorry to hear you are having a rough time of it. Hope it passes soon!:thumbsup: Or is at least is a sign that something is working and killing off the little buggers, don't know if it actually works like that?o_O
     
    justy and Valentijn like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    It's a pretty strong immune reaction, so it seems to indicate that something is happening :D

    Still a bit feverish today, lymph nodes still more painful than usual, and feeling cruddy. But it's not too bad.

    My mom and fiance picked up a bunch of ice packs yesterday. One is quite huge and flexible, and drapes attractively over my head, which feels awesome and keeps everyone else entertained. I can also fold it up into a narrow strip to put against my spine, which also feels very nice.
     
    xchocoholic, merylg, maryb and 7 others like this.
  3. maryb

    maryb iherb code TAK122

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    I have those, I get them from the local chiropractor office, I use 2 every night when I get into bed,(going upstairs with a glass of water, phone, ice-packs and in the winter a hot water bottle, its a juggling act:) - I put one pack on my forehead and one on the top of my spine,I wrap that one in a flannel.
     
    xchocoholic, merylg and Valentijn like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    I finally started to feel a bit better today ... less feverish and wiped out anyhow, though still worse than usual. I took a shower because it's been a week, which felt very nice but was exhausting of course.

    The nurse came by, the same youngish one as last week who lives nearby, and it took three tries to find a cooperative vein for the catheter. And by "tries" I mean a lot of poking around and some intense pain :p So now it's on the back of my right hand. I prefer my left hand for obvious reasons, but at least it's far from the wrist so I can bend things pretty normally.

    I closed everything down again when the antibiotics and saline were finished, and me and the nurse agreed that I'm ready to do it without supervision now. So she made a note of that in their notebook which they leave here to keep track of things in.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    Week 4 of the first antibiotic is done! Just two more weeks of it, then a two-week break :thumbsup:

    I've been making constant use of the ice packs over the past two days. Hot weather, plus feverish at times. At least now it's too hot to be bothered when I do have a fever :p One of the big ice packs broke, which I guess explains why it was under 1 euro.

    My right hand just seems to love to swell, even when there's no problem with the catheter. So I've been keeping it elevated all week and icing it periodically to keep that under control.

    The nurse left today after everything was set up, after making sure I knew how to close everything down and remove the catheter myself. I planned to wait til my fiance was home to help remove the catheter, but I really wanted FREEDOM and a nice cool shower in the very near future. So I very carefully peeled all the tape back with my left hand, using one finger to brace skin and/or the catheter, and other fingers to carefully peel back all the sticky crap.

    I got all of the sticky stuff loose, so it was just attached to the catheter and not my skin. Then I held a cotton pad in place against the insertion site with my thumb, and easily pulled out the catheter with my other fingers. Then I pressed the pad there firmly for a couple minutes, peeked to make sure I wasn't still bleeding, and stuck a little band-aid/plaster on it ... just in case :rolleyes:

    So it feels great to have it out, and awesome to know I can get it out alone!
     
    Last edited: Jul 4, 2014
  6. justy

    justy Senior Member

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    Hi Valentjin, so glad to hear about how you are doing - I wish I could respond more, I have so much I want to say, but am laid up with severe chest infection/asthma/breathing problems and have little energy to post - just wanted to let you know I am with you all the way!
     
    Sushi and Valentijn like this.
  7. Valentijn

    Valentijn Activity Level: 3

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    Yuck! Hope things improve very soon :alien:
     
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  8. justy

    justy Senior Member

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    I.m on Amoxicillin, double inhaler dose and now got a prescription for oral steroids as well, just in case I need them over the weekend. Doctor advised bed rest, which makes me giggle because when do I ever not spend ages resting?
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Wishing you well, @justy and well done, @Valentijn!
     
    Valentijn and JBB like this.
  10. maryb

    maryb iherb code TAK122

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    @justy
    sorry to hear you've got a chest infection, hope the a/biotics work soon.
    I saw a lovely chiropractor on Wed who spent a long time examining me - do you know you've got a throat infection and swollen lymph glands she said - well I didn't but am not surprised. Hands up those who haven't - hmmm not many.
    @Valentijn
    I liked your post but at the same time wanted to tell you off for not waiting until your fiancé got home:(
    but you managed it okay thank goodness. Once a mother always a mother:)
     
    Little Bluestem, Valentijn and justy like this.
  11. Valentijn

    Valentijn Activity Level: 3

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    It's not as bad as it sounds. Once the catheter is inserted, the needle is removed, so it's just a super skinny flexible (non-sharp) plastic tube left sticking into the vein. So not much capacity to damage anything even if it gets knocked around a bit. But it feels nasty if it moves around at all, so I was very careful :D

    And actually my fiance gets a little queasy around needles going into veins, so probably nicer for both of us that I could do it alone :p
     
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  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Valentijn

    Years ago when I was having nearly daily IVs (not abx, but hydrogen peroxide and EDTA), I, of course, had a lot of irritation from the needles. The IV nurse used to put a heating pad over the needle (I didn't have a catheter) actually during the IV--which lasted a few hours. This helped a lot. Then an ice-pack later.

    They also had a homeopathic cream which helped a great deal withe tenderness, swelling, etc. I have forgotten what that was but someone might now (perhaps something with arnica in it?)

    Your "vacation" is coming soon, great!

    Sushi
     
    Valentijn likes this.
  13. Hanna

    Hanna Senior Member

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    @Valentijn, that's great you're managing so well your IV! Bravo!
    When you write you are feverish at time during treatment, could you explain ?
    I am dealing with fever and tachycardia in response to Riamet (began with the drug, and still there 6 days after last tablet). Not a terrible fever (37.4-37.5 C) but one degree more than usual. Hubby (MD) thinks it could be allergic reaction to the drug...
    Perhaps it is a common pattern though...
    We are still waiting from answer from the manufacturer (Novartis)... before deciding to resume treatment or not.
     
  14. Valentijn

    Valentijn Activity Level: 3

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    @Hannah - A fever fits with the description of a Jarisch-Herxheimer (herx) reaction. The timing doesn't seem to make sense for it to be a reaction to the drug itself, in my case.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Re: Herx and Lyme and co-infection treatment: I am taking an abx and it gave me certain symptoms in the first few weeks. I wasn't sure if it was related to the med itself or was a Herx reaction.

    Later, I added a complementary herbal treatment for the same pathogen and got exactly the same symptoms. Conclusion: it must be a Herx as the herbals and the abx have nothing in common except that they target the same pathogen.

    Sushi
     
  16. Hanna

    Hanna Senior Member

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    Thanks Valentijn and Sushi, this fever is SO unusual for me that I become easily anxious.

    But... I remember a respected Lyme doc (was it Burrascano or Horowitz?) gave the following indication how to distinguish an Herx from allergic reaction to ABX : an allergy will come straight with beginning of treatment. An Herx will be delayed - doesn't appear on day 1 of new ABX.

    In my case, tachycardia appeared on day 1... And sadly I didn't think about measuring body temperature at the same time, just recalled to do this on day 2...

    Still some possibility of allergic reaction?
    Sorry to return on the subject, but I feel unsure.
     
    Last edited: Jul 5, 2014
    Sushi, Valentijn and alex3619 like this.
  17. Valentijn

    Valentijn Activity Level: 3

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    I woke up with a nasty headache this morning. By around noon it was pretty atrocious, though we still went to the shop with home disability devices and such, so I could pick up my wheelchair and a couple hot/cold packs.

    I've been pretty wobbly in general due to the antibiotics and Lyme die-off, so sorta staggered into the shop and sat down on a massage chair while my fiance did the talking with the clerks. Due to having gotten in touch with the disability/illness-type service, I was registered as being able to get a free wheelchair for 6 months. Basically that's the standard time-period, as a different service handles permanent or long-term disability assistance.

    So they basically just needed my name, and didn't even ask for ID or insurance info, etc. They asked if I needed a self-propelled chair or a transport chair. We said a transport chair would suffice, but they said the self-propelled ones are more comfortable, so we were agreeable enough. The first one they brought out didn't work well, since with even leaning on it gently the wheels would rub against the frame and produce a lot of annoying friction. So they pulled out another one which worked fine in a little test-drive around the shop, and we took that one home.

    By the time we got home, the headache was pretty much at migraine level, and I managed to sleep for about 3 hours. The headache was still there as soon as I sat up, but not as nasty. I gave my new hot/cold packs a try, and they worked great. Basically they come with a little cloth cover and a velcro strap. I promptly wrapped it around my throbbing head, moving the ice section around as the headache moved around. I was also able to hold two of my small non-medical ice packs under the strap, so entertained my fiance with my stylish head gear for a while :cool:

    I then did a Neti pot to clear out my sinuses, since my chronic sinusitis can contribute to headaches, and that seemed to help a bit. I also took some folic acid (I don't have any MTHFR problems) as that can help if my headache was due to eating any MSG/E621 recently. And then I batted my eyelashes until my fiance gave me a back and neck massage, with some extra rubbing at the base of my skull, since that can help if any tension is contributing to the headache. And then I had a double espresso. And my evil headache of doom finally gave up and is now almost entirely gone unless I try to think too hard or move around too much!

    The headache might be due to a herx reaction due to Lyme die off, as it's one of the basic symptoms for it. But I haven't had one before while on the antibiotics, so I'm more inclined to think it was due to food and/or swelling.
     
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Valentijn

    Have you tried any of the detox remedies that Borrelia patients (those who are under treatment) are using? I am finding that Smilax (sarasparilla), pinella, parsley, and burbur (Nutramedix) are all helping me tolerate treatment.

    Hope the headache is gone by the time you read this.

    Sushi
     
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  19. Valentijn

    Valentijn Activity Level: 3

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    I'm mostly doing okay, and the headache is now pretty much gone :) If it comes back, I'll look into it more, but otherwise I'll assume it was caused by other factors.
     
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  20. Hanna

    Hanna Senior Member

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    @Sushi, have you noticed some difference between smilax and pinella? They address both detox problems especially those that deal with the brain, don't they? Or do they have some clear diffrence targets?
     
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