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My first appointment with KDM

Discussion in 'ME/CFS Doctors' started by RML, Apr 7, 2014.

  1. RML

    RML Senior Member

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    Ah yes I know the place, I noticed people sitting out there on the way to the clinic and yesterday evening after dinner went for a short walk up that way to have a look at it. Couldn't work out though if it was for public or as I was assuming for the workers in that building since the sign on entrance drive said 'private'. It would have been a good alternative tonight if it wasn't so late. I will try there tomorrow if it is raining again too much to walk to the restaurant in park, and that place is closer too and without the uphill walk back from park!
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    My hand tends to get a little swollen after infusion too. I try to put ice on it soon afterward, both on the fingers and the wrist, and keep it elevated. I never let it hang down.

    When you get to the clinic you need to let the nurses know you're there :p Then they know to call for you as soon as they have a moment. Otherwise I think they look at the list after a while and realize you haven't shown up yet and go looking for you.
     
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  3. maryb

    maryb iherb code TAK122

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    Does anyone know where you would shop for food (gluten, dairy, etc free) if one was to stay at the Eurovolley.
    It sounds a nightmare for someone like me. Unless there is a supermarket nearby for fresh produce.
    Are there any cooking facilities in the rooms?
    Or room to put a toaster?.
     
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  4. RML

    RML Senior Member

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    We brought a travel kettle with us so using that.
    Food is proving a big issue, I am a vegetarian but am not a big fussy eater either. the consultant I saw recommended to cut out wheat for 6 weeeks.. I hadn't started it yet but bread is plentiful here, and my main eating source.
    I did find a shop today though, not near the hostel but near the clinic. After infusions were over today, we went for a walk to find military hosp cos our bus from Monday will be stopping there. I don't want to get lost on my travels over to Schaerbeek on Monday. ACross the road from military hosp was a shop selling groceries. Now I didn't go in to check it out, and it did look small so perhaps not cater for gluten or dairy free , but you could get a few basic supplies. If we had known about it earlier we would have stopped and bought some stuff after clinic before heading back to Eurovolley.

    Having said that you can't buy much as there is no where to keep them or store. Chocolate melting in my room, tried to buy milk for tea and juice for readisorb and vsl. They don't keep long. Everytime we enter the room get a whiff of our fruit fermenting or something. It is incredibly hot and stuffy here, no air etc

    If you are coming in a car by ferry or by that train ? from st pancras, bring a fan , mini fridge or kettle etc. By plane we couldn't do this.

    yesterday my mum saw a guy in a room few doors down with a big fan blowing (it looked bliss) we asked him did he get it here at hotel, but he brought it with him.

    We did find out this morning a good tip for others for future use. The very tall lady at reception this morning when we went to get my Readisorb from the fridge, said something like its a pity there isn't a fridge in your room. I guess she was bored getting us stuff three times a day as i was fed up trekking down to ask for it. Anyway, my mum said something like it would have liked a fridge or be better, something anything.

    Then she tells us they have 3 rooms with fridges!!!! But we didn't know this so didn't request this or even ask. they were not free and it was our last day so wouldn't move then anyway.

    But for anyone going there again, request one of those rooms. It would have been great for our Vsl that first night, and avoided the panic of ruining hundreds of euros of meds. My mum hung the cool bag out the window, trying it with the string from her dressing gown around the radiator. but the strap broke so need to fix it.

    Because of the lack of cooking facilities, that really ruled the place out for me for a long term stay.
     
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  5. maryb

    maryb iherb code TAK122

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    @RML
    thanks you really confirmed what I thought, not really the place for long term is it.
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    @RML - Something we discovered to be very helpful at stuffy hotels is to open both the window(s) and the door. This can generate quite a refreshing breeze as air is pulled through.
     
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  7. RML

    RML Senior Member

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    @maryb I do know that others have stayed there long term for their treatment, so perhaps for some the benefits of the place is more beneficial than the downsides. Just not for me. The downsides too many and too much. The main one being somewhere to prepare proper food.

    @Valentijn Ah didn't even think of the door, it's very stuffy and airless in halls and lounge part. My mum was making skype calls and googling out there cos no wifi in room, so that would have aired up the hall for her too.
    Also, with window open all night, I have a whole load of bites and slight swellings on back of both my legs. I have enough trouble with nasty lil critter bites to deal with already!

    I'm just back from park restaurant, and even though I had little appetite, I wolfed down the meal I ordered, it was huge and three times what I normally eat, and wasn't planning on eating even half it, but I just kept shrovelling it into my gob. Nice to get a good meal.

    On the walk back, I started to get worse and weaker with every step. Now I don't know if this is reaction to IV's or just normal reaction. Whenever I eat very big very heavy meals, it always ruins me, I wilt and almost fade away, lose all my energy etc Since I lost my appetite months or maybe even a year ago, I rarely react to food like this because I am not eating much anyway.
     
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  8. lnester7

    lnester7 Seven

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    @RML the one thing I learnt if Food brings you down, you mgiht need to test for food allergies, I don't get normal symptoms in gut. I get fatigue, BF, Joint pain from meals.... Also I was allergic to most condiments so it was hard to figure it out everytime I tried food elimination (I cook everything w garlic!!!) so no matter ho balnd mi diet I had to be tested to figure the whole meal things. Now when I void the nad ones I feel so much better. I htink we all progress to that eventually in CFS to food allergies.
     
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  9. bertiedog

    bertiedog Senior Member

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    Weak adrenals also make you feel a whole lot worse after eating so maybe looking into getting some adrenal support to see you through your treatment, even if only something like Siberian Ginseng or even adrenal cortex if you have lowish cortisol?

    Good luck with your treatment, it must be a nightmare not to have cooking facilities and also for it to be so hot. That would stress me out bigtime and don't think I would get much sleep cos of it and I would end up so much worse so think you are doing really well.

    Pam
     
  10. Riverview

    Riverview

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    Hi @Sushi -is that the Carrefour supermarket or is their another shop?
     
  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @RML I don't know if this is possible but is there a store where you can buy some protein bars or snacks for the room that do not require refrigeration?
     
  12. RML

    RML Senior Member

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    @Gingergrrl You see there could well be, but not knowing the area or where to go, it's hard to know really. Tomorrow morning I move out of here, and while it is far from clinic, it is much more in centre for shops and amentities, whatever we might need. After we arrive, and get shown around by hosts, straight away we will go get some basics. they already sent us a kinda guidebook with local shops and such. There is one 5 mins walk , 12 mins and 21 mins away.

    but you are right, I shoulda packed a few power protein bars for these few days.
     
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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sorry I don't remember the name but it is more of a restaurant than a supermarket--simple, inexpensive things. All I remember is the location and the red circle.

    Sushi
     
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  14. Valentijn

    Valentijn Activity Level: 3

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    I took a small glass jar about halfway filled with Hemp protein with us, and an empty glass jar for shaking up the protein with water or almond milk. It rinses out very nicely, so I can re-use the jar without having to wash it. And even though it's mostly protein, it also has a nice bit of carbs and some fat as well, so it got me through a few meals when I didn't feel up to eating "real" food :p
     
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  15. RML

    RML Senior Member

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    Hey guys, remember me?

    Well, my 3 month adventure in Brussels is over!
    I had planned on keeping this up to date for the duration, but well obviously, I failed miserably at that. Things got quite hectic and busy and hard and good and lots of things actually. Too much to mention it all now. But I think I did more in those last 3 months than I have in last 3 years! That pretty much sums it up til I get a chance to do a proper round up of it, if I ever do!
    I thought I got to week 3 but It seems now looking at my last post, I only made it to end of week 1! Oh dear!

    Anyway, my last IV treatment was last Wednesday (ironically also marked the day I got sick 3 years and my world/life/future fell apart), well better to get the treatment late than never , but I hate to think of the irreversible damage done in all that wasted time doing nothing, that it took 3 years to the day to finish 1st round of treatment is crazy. I flew home on Thursday, and since then I have been resting from trip, and unpacking and washing lots and lots of clothes.

    My consultation with the Professor was the week before, so week 11. It went ok, but while he was not in a bad mood, he wasn't very informative etc, we felt no further on with info or advise etc after we left the meeting. To all our questions, his answers were mainly along the lines, 'No, not now', 'Later', 'Too early' etc. Just vague! I was a bit stumped coming out of it, but I don't think it was a bad thing really. I am a little different to others, and some serious issues to consider that he is not used to. So he needed to think on it.

    So had the consult Wednesday week 11, but he couldn't tell us at that point what next step was, which I was eager to find out , and also to start planning pharmacy ordering and collection and price comparisons too. I asked if it would be orals or herbals. he did not say then, but on Monday week 12, we collected the prescription from Ira.

    (I had also asked if LDN would help lower my cytokines which were crazy high, IL8 especially at 20,000 ish, in last /follow up appointment, he was very concerned over this and said it was v damaging. So myself and my mum were anxious to get this down obviously, and I had heard other patients were on it, and it could lower cytokines too. He said no, too soon to bring them down , needs more time at treatment.? )

    Anyway, back to the prescription, he eventually went with 2 months of doxy and clarithromycin (not sure how to spell it), as well as continuing the original so called pre-treatment. Now, we got no instructions or info or advise on these two new ones. And since we didn't get to find this out til after the consultation, we could ask or inquire etc from the main man himself. Jan was on holidays and still is now this week. So I can't ask him either.

    So I am looking for a lil advise in the mean time. When is best time to take them, or avoid other meds or foods, etc

    I was not told either when to start them , straight away or take a break. So I am making that one up on my own. I decided not to start on Thursday straight away cos I was flying and stressy with packing and such. I had planned to start on Monday instead. Give me the weekend to rest etc. I still not started them, so gotta start today, I guess, but slept really bad and deeply and disturbed, bad headache etc.

    I don't want to put it off starting orals, cos my next appointment is exactly 8 weeks away so need to start now.But with no info, it is hard. The instructions for clarithromycin is in french, flemish and german and maybe something else. Not English anyway. And the doxy was made up pure by pharmacy from scratch and i think see any leaflet provided . I guess they assumed the doctor would do it.
     
  16. RML

    RML Senior Member

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    Ok so after that long ramble, I guess my main point should have been how and when to take the 2 oral abx?

    Once in morning , once in evening? Both together or split up over day?
    Just swallow like normal tablet, or did @Valentijn mention her's dissolves in water? Is this usual way of taking it or simply what is working for you best to help with nausa issue?

    The way my usual treatment before orals went a bit like this:
    1. Lipsomal Gluthathione first thing in morning, followed by tea and breakfast (with creon) 20 mins later.
    2. Some point in afternoon, between brunch and dinner, I take choline and lactoferrin, split up over an hour apart.
    3. First Vsl3 before dinner , maybe an hour before, followed by lots of water to flush it through.
    4. then, dinner with creon.
    5. then a while after dinner, again , choline and lactoferrin , split over a time period.
    6. Second vsl just before getting ready for bed.
    7. Before I sleep , i take cerezette and Rivotril.

    I was also trying to fit in detox supplements while on IV too, such as Chlorella 2 x2 day, usually around time frame of choline and lactoferrin. And smilax tea. As well, green tea, lemon water, green juices, kefir.

    I just don't know where to fit in the orals, my head is spinning. It is full time job remembering and taking all that crap at the right time etc. I barely fit in the extra's or at least pick one or two a day. No wonder i have little appetite (even though that has improved quite a lot on azithro) for actual food when I am taking so much stuff into me.

    I am dizzy trying to think. I am probably over thinking, as well , as usual.
    Any help would be great!
     
  17. RML

    RML Senior Member

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    I am aware of the sun issue with doxy - well, it is a miserable wet rainy cold dull typical Irish day outside, so not much of an issue.
    But I am wondering about doxy interacting with laser therapy.

    As when I get that, in laser clinic, they always warn to stay away from sun etc so was thinking it would interact with the doxy in a bad way, make a burn etc .

    So maybe I should avoid it for next 2 months til treatment is over. I was planning on going for a laser appointment later in week, as going somewhere at weekend, and last time I got it done was 3 months ago before I left and it only last 6-8 weeks, so it is due again. My mum suggested to get it done today, and start doxy tomorrow instead. Now I don't know, I think it might be a longer acting issue?
     
  18. Valentijn

    Valentijn Activity Level: 3

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    @RML
    Regarding laser treatments, it sounds like it's best to wait, as it can trigger the same sort of reaction that sunlight does while on doxycycline.

    I take the doxy first thing in the morning. Because I get a neurological reaction to it for a couple hours after taking it, I can't watch TV or use my laptop during that time without getting extremely motion sick. So I take it on an empty stomach at my pre-dawn wake-up when I have to use the toilet, then I go back to sleep for a couple hours, or just lay there with my eyes closed. Then I have no problems with it at all. (Someone else has the same reaction, so it might be an ME thing.)

    Mine comes as two 100mg tablets which I dissolve in a small bit of water ... basically no more than I can get down in one swallow. They basically fall apart once they hit the water, and I just give them one or two stirs with a little spoon, then swallow it quickly and drink a full glass of water to wash that down. Definitely avoid taking minerals (calcium, magnesium, etc) around the same time, since they bind with the doxy and prevent absorption. The doxy can be swallowed without dissolving it, but apparently it tends to stick in the throat that way, due to it breaking down immediately.

    I take the clarithromycin on an empty stomach around noon, then wait at least half an hour before eating lunch. Food interferes with the absorption of most antibiotics, so it's generally recommended to not eat a couple hours beforehand or 30 minutes afterward.
     
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  19. RML

    RML Senior Member

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    thanks @Valentijn , i was thinking of getting laser done today since I have not started doxy yet and wait 2 days, but maybe that is not a good thing either. I don't know what to do. I guess leave it will be best. I did not even think of it before last night and planning what i need to do before going away for family gathering at weekend.

    I will try work out later if they are dissolve kind of tablets are not. or swallow. there is no instructions whatever so ever since the pharmacy made them up. Just in a little plain box. Only my name and KDM's on it.

    Usually I don't eat til noon anyway, for a breakfast/lunch thing. So should i take clarithromycin before that then?
    I am meant to take gluth drink first thing on empty stomach too, so should i take doxy first before that?

    I guess it will take a few days to get into a routine with it, and work out how it is affecting me and what works best.
     
  20. Valentijn

    Valentijn Activity Level: 3

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    @RML - Is there a manufacturer name or mark on the pills or blister packs?

    Regarding an empty stomach ... I had serious problems if I had anything at all in my stomach for up to two hours after taking the doxycycline. Taking two supplements made me throw up for 5-10 minutes, which was pretty painful for my jaw.

    I'd take the doxy first, then the glutathione only when you're sure you're not getting any "motion" sickness.

    You could probably take the clarithromycin a couple hours after lunch, if that time works out for you. I think it basically just needs to be spaced apart from the doxy and apart from food. Or take it a while before lunch, if you're taking the the doxy at 4am or something :p
     
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