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My first appointment with KDM

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

  1. Daffodil

    Daffodil Senior Member

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    i think I had diarrhea pretty quickly after starting the VSL-3..maybe a day or 2? can't remember exactly
     
  2. NHjane

    NHjane

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    This is from VSL#3's faqs on their website:
    What if I experience bloating symptoms?
    Mild bloating may occur during the first few days after starting to use VSL#3. This is usually a transitory phenomenon due to the changing intestinal microflora. If you experience bloating, you may need to reduce your daily intake to allow this adjustment. It is best to report any unexpected reaction after consuming VSL#3 to your physician so that the symptom may be evaluated in the context of your general health history.

    (good luck with the last sentence, but at least the beginning gives a useful suggestion)
     
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  3. RML

    RML Senior Member

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    My bloating is a regular thing with me anyway, I don't know what causing it. I assumed it was a food intolerance or something but they mainly came back fine. My belly bloated way up day before starting all this for whatever reason. I don't want to make it worse, it takes weeks to go away as it is.

    So I was thinking of stopping taking the VSL for a day or two, hope the bloating goes then start it again. I have not taken it yet today. But since there is good stuff in it that I desperately need, so I am not sure what to do. I fit none of my clothes, even yoga pants.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you are taking two packets, maybe you could try just taking one for a bit?

    Sushi
     
  5. RML

    RML Senior Member

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    Have not taken either today, completely clogged up and want to settle that, think will take enema tomorrow if doesn't sort out.
    I will try one from tomorrow for few days.

    You said it should be taken at night before, should I take both at night same time. I only seperated them through the day as thought it would be best.
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I was only taking one packet, so I guess that is a question for him.

    Sushi
     
  7. aquariusgirl

    aquariusgirl Senior Member

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    Got a link to your blog RML?
     
  8. RML

    RML Senior Member

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    Just had my first B12 injection. Absolutely horrendous, been roaring and howling with pain 5-10 mins , begining now to settle to more of a dull ache but still sore.

    As a teenager and early 20's, I was very nervous almost phobic about needles. But since working in a hospital as a student watching them constantly, and knowing when I graduated I would have to give them too, helped normalise it for me. And then obviously when I did get sick (and not graduate) had constant stream of blood tests, I didn't care or notice anymore, too sick with other issues to care about a needle.

    So these things have not bothered me for a long time, so surprised by my reaction crying throughout and after. But I don't think I even felt the needle bit though.

    3 times a week, so lets hope it goes better next time or work a better method!
     
    Valentijn likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    :wide-eyed:

    :rofl:

    :whistle:

    Some spots are worse than others, and will hurt like a bastard no matter what.

    A couple things that help are going very slow with the fluid injecting, and constantly making sure your leg is completely relaxed. Injecting into a tensed muscle is a LOT more painful, in my opinion.

    And remember to breathe!

    I think hitting a blood vessel can cause pain too. Basically if there's too much pressure pushing back, I pull the needle out slightly, then continue.
     
  10. RML

    RML Senior Member

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    My mum did it in the hip, and don't think she did it slowly at all. Even though I went through your blog advice and experience with her yesterday. It was over and done with it before I knew, just pain after wards stuck around for forever, well gone now. As I was crying with pain shouted at her to 'Take it out, just take it out' , which thinking about it now is so funny.
    Go with leg next time.
     
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  11. Valentijn

    Valentijn Activity Level: 3

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    Yeah, I do the outer thigh, preferably the upper part. Never tried the hip :p

    And it should take at least 60 seconds to do it, maybe 120 or longer. If the liquid went in really fast, you might have one helluva bruise now :(
     
    RML likes this.
  12. RML

    RML Senior Member

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    Oh just checked ... no bruise yet!
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @RML
    Also the B12 that is supplied in Belgium, (maybe all of Europe?) seems to have something in it that makes the injection painful. At one time the nurses at Himmunitas were advising patients to draw up a bit of lidocaine with the B12.

    I get mine from a US compounding pharmacy and it isn't painful at all--if I inject it really slowly.

    Sorry you had such a bad time but you could consider getting some lidocaine prescribed to help.

    Sushi
     
    Valentijn likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    Does it hurt if you poke it? :D
     
  15. RML

    RML Senior Member

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    Nope not badly anyway
     
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  16. RML

    RML Senior Member

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    I wasn't sure to mention this or not as it is not to do with my visit to KDM as thread is about, but I suppose it is to do with treatment, and a few people have commented on my 'Can't Stop Crying' status update, so I will relate here anyway - and I need a bit of a rant ! Ha!

    On Tuesday, I had an appointment with an Infectious Disease specialist in hopes of him signing a referral so I could get homecare IV treatment through my insurance co. I had huge doubts about how successful this would be. I got plenty of responses giving me mixed messages. Some said it has been done on odd occasions to give it a shot. I kept changing my mind on whether to go or not, and eventually decided no, until about 2 hours before appt at 1.30 still in bed so got up, got ready and decided not much to lose.

    So I went anyway against my better judgement which I wish I had listened to. It was a disaster! Horrendous experience! I wasn't expecting much when I went in and kinda knew it would be a waste of time and more money.

    First thing off, he totally dismissed my Infectolab tests, and barely looked at the rest.
    Even stated I didn't have Lyme, while shaking the infectolab sheet in the air. But admitted something wrong with me, could be viral or bacterial! Just something!

    He talked and talked and talked with his prepared speil on lyme and ticks etc. I couldn't get a word in edge ways. Would not listen to me, I tried to point him to CD57 result, my crazy super cytokines, gut stuff, exercise test, pointed out have severe hearing loss from this. Whenever I tried to explain or persuade, just ignored, didn't want to know.

    He was quite arrogant and unpleasant, especially when I refused more testing. I was polite explained had them already, spent 3 grand on them, don't need or want more. But kept banging on about this antibody test, I couldn't remember if I had it or not, some came back negative.

    He even scribbled all over my notes and reports from KDM, circling things, crossing things out - I was getting livid!

    When explained didn't want doxy as he offered, cos of my gut issues I din't want orals. IV's better for me.

    I also said LTT is better test, more reliable and relevant not the one he is pushing. He said there is a reason it is not used in this country, to which I said 'It's new test, takes time to change etc'

    He really disliked being disagreed with or argued back at, even though I was calm and polite, he stated he was the professional here, he was trained not me. I said I had to train and educate myself as no one would give me any information.

    He looked down on us completely for having an opinion . Didn't like being talked back to.

    I also mentioned that Lady I met who got even longer long term IV than I was looking for, and scoffed at idea as if a fantasy.

    I actually started to cry, and once I started, I couldn't stop, (in fact I kept on crying the whole car journey home and on and off rest of day) my mum dealt with him from then on.
    It was very upsetting experience. He is not the option for me. He can't offer what I require. I knew this going in of course. But went worse than imagined and I wasn't even expecting anything good or useful from it.

    I am not sure why I got so upset, I mean I have been treated worse before, but think I have been softened by experiences with KDM, now having a brilliant minded and caring doctor who 'listens'.

    I had forgotten the horrors of what normal usual doctors are like.
    I just kept thinking as I was crying,' I'm so sick, My life has been destroyed by this long enough, my future hangs in the balance, Why won't anyone help'.

    But no point messing around with clueless guys 'trying' but not knowing what to do. I do have other options here

    So it seems, I will be sticking with original plans, and heading to Himmunitas for treatment in August.

    Onwards and upwards from here, I spent a lot of time trying to get this done here, but putting it behind me now.

    A waste of 100euros, but nothing lots of choc and my fav pizza takeaway and puppy cuddles didn't solve.
     
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  17. NHjane

    NHjane

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    So sorry you had to go through all that. We are hitting the same walls here in the US - can't find anyone willing to support a PICC line treatment or in fact any recommendations from another doctor. On Tuesday we see the same infectious disease specialist who didn't find Lyme 8 years ago and declared (as if we knew what she was talking about) "Oh, your mono isn't better and it's been 6 months? Oh, you have Chronic Fatigue." as matter-of-factly as if she'd noticed we had brown hair.

    But she's our last hope because we know she does IV infusions in her office, tho we suspect for only 3 weeks blah blah... And then we'll have to give up as well, and start all over again, or plan to move to Brussels for 3 months of treatment.

    And then what after 3 months? Still need a doc here to talk to, get scripts from, etc. Very hard, very discouraging, but just can't figure out how to get the treatments except in Bxls...
     
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  18. RML

    RML Senior Member

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    Yes I understand exactly @NHjane My aunt organised this appointment as well as ringing loads of neurology and i.d guys too, none except this one I saw replied. My aunt never really understood why we just sit and wait and do nothing to treat it or whatever, she doesn't understand the challenges and barriers that are there. I think after lack of responses and dead ends she faced in last few weeks, she finally understands.

    The guy I saw is meant to be best, but best of bad lot. He would actually give me antibiotics just orals and short term. For me that was not acceptable, I need fixing or at least a decent proper attempt at it. I don't think the group that recommended him were pleased with my stating it was bad experience even though I did down play it alot there. He is only option for some treatment here, not everyone in my position to travel.

    I hope you manage to get what you need to heal yourself @NHjane , good luck.
     
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  19. NHjane

    NHjane

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    Thank you @RML. I wish it were me as I'm over 60 and have had a good life. It's my 29-year-old daughter who has been suffering like all of you, for 8 years. But thank you and I wish you the best as well.
     
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  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Do you have to spend the time and money to go see her in person just to find out if she is willing to do the prescribed IVs? Can't her office staff tell you what her treatment policies are? It seems to me to be adding injury to insult to have to pay to be told that a physician won't treat you.
     
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