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In Belgium to see Dr de Meirleir

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

  1. Hanna

    Hanna Senior Member

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    Congratulations Val for the Azythro IV first round and all the preparations for the following at home. Not simple!
    hope the dizziness will fade away.
     
  2. Valentijn

    Valentijn Activity Level: 3

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    I've had a fever the past few days, and feel "normal"-sick instead of PEM-sick. So basically it sucks, but it's likely a sign of progress with the 2nd IV antibiotic, azithromycin, in killing off the Lyme bacteria which are in a different stage of their naughty little lives. I still don't seem to have any adverse reaction to the antibiotics. And I'm drinking lots of water to help get rid of the toxins released as the spirochetes die off.

    I tend not to have pain issues now, aside from a mild ache that comes with the fevers. Something which also started during my last batch of antibiotics is that I can now lie on my right side, back, or stomach for more than a few minutes, instead of just my left side. I still need to test that with my pulse oximeter though, to verify that my oxygen isn't decreasing in those positions and/or my heart rate isn't increasing.
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder if, after 19 years with ME, I would recognise 'normal sick'. I think so.

    All sounds promising anyway!:)
     
    Valentijn likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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    A lot more fever, and less pain and cognitive dysfunction :D
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Only the first and last could help me as I have very little pain. My PEM is dominated by poor sleep, polyuria, weakness, swollen glands, congestion, mild head- and neckache and gut problems. Plus the brain fog of course.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    Week two of the IV azithromycin has begun! It's been an interesting past few days. First we learned that after it's been mixed by the pharmacist, the azithromycin-saline solution has to be stored at 5 degrees or lower. We'd pondered picking it up from the pharmacist each day, or storing it in our travel cooling box, and thought to check our refrigerator to see if it was getting cold enough.

    Basically it was usually at 10-12 C, and didn't get below 7 overnight. Which is way too warm for the azithromycin AND food :rolleyes: So we ordered a new fridge, which we can now store the antibiotics in. With the added benefit of meat and cut veggies not spoiling in under 48 hours!

    Everything with the pharmacy went pretty well. My fiance picked up the antibiotics for this week, and the other items for the next 5 weeks this morning. They didn't have the IV lines which the home care people like, which can hook into 2 packs at once - the antibiotics, and a small saline bag to flush the line before and after the infusion. They also didn't have the little bits of a line to attach to the cannula, which I need to be able to unhook myself when it's done. So the nurse brought the IV line which they like to use, and a couple odd little line bits which are too long and rather skinny.

    The nurse arrived about 10 minutes late (usual arrival time is 2pm-4pm), which I don't mind except I worry that they're not going to show up :D I took 4 tries to a cannula inserted - a new record! Due to it taking 2-3 attempts to get one in me usually, we'd used up my supply and the nurse grabbed a spare from her car and phoned the pharmacy to order more. Those and the little line bits should be in the pharmacy by Thursday morning. We'd had more pink ones, but I hadn't realized that those weren't suitable, I think due to them being too long ... which is fine for nice big straight veins on arms, but not so nice for short little curvy hand veins.

    So eventually we got the IV started, though the cannula is next to the knuckle of my pointer finger - nasty location, but better than none at all :confused: It also means that the sheet of clear sticky stuff holding the cannula in place is gluing my first two fingers together, though only a little bit. And none of our scissors are sharp enough to cut a slit, of course!

    I'd hoped to be able to do the IVs in 2 hours or so, since that's what I was able to do at the clinic. But I forgot about the chill factor. At the clinic, IVs for azithromycin didn't need to be stored since they were used quickly, so they were basically mixed up fresh into room-temperature saline. Hence they weren't too cold going into the vein. But fresh out of the refrigerator, having liquid stored at 3-4 degrees Celsius it's really damned cold :eek: After 15 minutes or so my hand started aching, and felt icy when I touched it. So I've turned down the speed of the drip so that it has enough time for the infusion to warm up as it travels down the line before hitting my veins.

    Hence it's looking like it will be at least 3 hours, and I won't be done until 7pm. I'm not even going to think about trying to cook even a super simple meal while dragging my IV-stand around, especially since one lockable wheel is stuck even when unlocked. Hence when I try to pull it, the stand moves with me well enough but slowly rotates, twirling my IV line around it :rofl:

    And now, since I'm wiped out after all of the cannula insertion attempts, I'm going to lie down and watch Masterchef Australia :thumbsup:
     
    Little Bluestem, rosie26, Mij and 4 others like this.
  7. Cheshire

    Cheshire Senior Member

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    That's great to see you're slowly getting better!!
     
    golden likes this.
  8. Hanna

    Hanna Senior Member

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    @Valentijn perhaps it is a silly question, but can't you let the Azythro-saline solution at room temperature in order to get it a little bit warmer before the nurse comes ? Does it have to be at 5 degrees all along untill it reaches your vein?
     
  9. bertiedog

    bertiedog Senior Member

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    As you know @Valentijn I have recently had a positive LTT from Infectolab plus positive for Ehrlichia and normally walking helps me to feel better and I don't get PEM so I feel I have just been misdiagnosed and don't have ME/CFS at all.

    Because the borrelia have affected my immune system so badly I get frequent infections/viruses and I have had what I think is a bacterial infection in my gut but it has also affected my throat so I have felt really crap and unwell. Going to start some Cipro I have got cos cannot stand feeling like this. I had been doing really well on LDN plus herbs, only had 4 bad days in a month until this bug came along. I think I caught it in one of the cafes on the M25 last Thursday when travelling to Brighton to see my herbalist!

    Hope you continue to do really well.

    Pam
     
    Riverview, SOC, justy and 2 others like this.
  10. Valentijn

    Valentijn Activity Level: 3

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    If I knew what time they would arrive, maybe ... but I don't want to end up leaving it out for almost 3 hours if they come at 4pm instead of 2pm. Though it can handle 24 hours under 25 degrees celsius, so it's probably safe as long as we're not getting hot weather. It looks like it should be staying under 22 for the next few days, so I think I will give it a try tomorrow. Though recently we had several weeks where the house couldn't cool down to under 25 or so overnight even with the windows open :p

    Though I still worry about it degrading at all, since it is so very temperature sensitive.
     
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  11. Valentijn

    Valentijn Activity Level: 3

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    I had "just" Lyme for over 15 years, and that sounds like about how I was before I hit the ME/CFS wall after a particularly nasty infection. My mother's also at that stage ... late-stage Lyme, and able to be active, but definitely having some neurological symptoms and unable to build up any stamina.

    It just crept up so slowly and everything seemed relatively "normal" at the time :p
     
    Riverview likes this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Valentijn
    I've been in an IV clinic where they put a heating pad over the cannula for the whole infusion--possibility?

    Sushi
     
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  13. Riverview

    Riverview

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    @Valentijn
    Following on from @Sushi -I have heard that patients put a hot water bottle over the cannula if the infusion is too cold and therefore causing pain.
     
  14. SOC

    SOC Senior Member

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    Oddly, that actually sounds good. :rofl:
     
    Valentijn likes this.
  15. Valentijn

    Valentijn Activity Level: 3

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    It is good. Even when I'm in sick zombie mode due to the fever and such, I'm a happy zombie staring blankly into space :whistle: I can also handle more reading and games during it, even if I'm more or less unable/unwilling to move.
     
    Riverview, SOC, justy and 1 other person like this.
  16. Valentijn

    Valentijn Activity Level: 3

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    Everything went fine again today. The pharmacy called me directly (they usually talk to my fiance) and the pharmacist was very sweet and happy to speak very good English. They wanted to let my know the various bits were ready (except the short bits of IV line to attach to the cannula, so I let them know we'd either pick that up tomorrow morning or later ... basically sometime before the next cannula gets inserted on Tuesday.

    A new nurse came by today, yet another very nice one! She showed up around 2pm, so my stuff was still in the refrigerator. I decided I'd take the antibiotics out of the fridge at 3pm, if no one has showed up by then (my slot is 2pm-4pm), so if they show up before 3pm I still have plenty of time to take it slow but still be done and recovered in time to make dinner. And if they arrive after 3:30pm or so, the antibiotics will have warmed enough that I can do them somewhat faster and also get done in time to make dinner, but not have to worry about leaving the azithromycin sitting out too long.

    Something I think I forgot to mention earlier is that the amount of heparin used after infusions should be enough to at least fill the cannula and any bit of IV line staying attached to it. So when KDM says 2mL, that's probably with the assumption that nothing is attached to the cannula. But with a skinny 25cm line (or a shorter fatter line) staying attached between infusions, 4-5mL heparin makes more sense to ensure the line has been filled.

    The azithromycin did start to hurt a little near the end of the infusion. But it wasn't a problem with the cannula, since the IV saline I used to wash the line afterward didn't hurt at all. A bit weird - maybe it was just too much using of my mouse-hand during the infusion, to play Anno 1404 :D
     
  17. Daffodil

    Daffodil Senior Member

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    I have a burning question. If CFS is Lyme, and most of us carry EBV, but many of us seemingly got sick after EBV, does that mean that the Lyme somehow weakened us first and then another trigger (perhaps another encounter with EBV) caused the EBV to reactivate?

    I know KDM is finding Lyme in most of us and I also know that he feels that the EBV is more of a reactivation than an initial infection....so I am just wondering how to tie it all together.

    If someone is there in Brussels, perhaps they can ask this question, if possible?

    Thank you!!
    xoxoxo
     
    merylg, Valentijn and Hanna like this.
  18. Hanna

    Hanna Senior Member

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    I have the same question as Daff (because my scenario is the same).
     
  19. Valentijn

    Valentijn Activity Level: 3

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    I picked up the Lyme bacteria 20+ years ago, and started having some minor health problems then. I was pretty functional (80-90%) - until I got proper ME I was working or in school full time, but really no spare energy for socializing much.

    I had intermittant ME-like issues, but very mild and transitory. BP issues at times, especially when going from laying to standing while exercising, and getting "sick" constantly during some exercise and martial arts classes. But at other times, I could do the same classes (I had to repeat one at uni) without problems.

    Then a very nasty flu or other infection triggered chronic and pretty severe ME. It might have been EBV - a woman in my language class had been sick before she came to the Netherlands, with the same symptoms I was having at the time, and said it took her months to recover. And another woman in our class got pretty sick shortly before I did.

    So I wouldn't be surprised if an acute viral or other infection is triggering ME in patients with different underlying chronic infections. It might explain clusters in families (shared exposure to the mild or latent chronic infection), and why only a minority who get EBV, etc, end up getting ME afterward.
     
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  20. Sasha

    Sasha Fine, thank you

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    I don't want to derail this thread but I'm curious about this and whether the test he's using is sensitive or likely to be giving false positives, which I know is controversial. Is there a thread on this somewhere?
     
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