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Thread: The Weggie Book - tell your story time

  1. #31
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    [QUOTE=marta;301Is there anyone out there who is taking any other antibiotic (other than Bactrim and Dapsone) to keep your lungs safe while being immunosupressed? Just curious. .[/QUOTE]

    I can't take Bactrim due to drug allergy and dapsone broke my red blood cells and caused anemia. I take a nebulizer every four weeks of pentamide and have usually been on some antibiotic for bladder infections. The pentamide supposedly helps control the normal fungus people have in their lungs and keeps it from getting out of control. Healthy people normally have no problem with the fungus usually found in their lungs.

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    drz, the purpose of taking Bactrim with ctx is to protect against Pneumocystis carinii, a type of bacteria that causes a difficult-to-treat pneumonia in immune-compromised people. The pentamide for fungus is a different matter. I haven't heard of that and wonder if you're on it because of a history of fungal infections.

    I was on Bactrim the first time I took ctx, but I didn't take it last year when I was on it the second time. It was a risk, but Bactrim has been hard on me in the past and I didn't want to weaken my body with it. Dr Seo didn't get upset like I thought he would. I'm pretty good at avoiding infection. For those of you who work or live with other people (especially school-age children), the risk is much greater.

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    Quote Originally Posted by Sangye View Post
    drz, the purpose of taking Bactrim with ctx is to protect against Pneumocystis carinii, a type of bacteria that causes a difficult-to-treat pneumonia in immune-compromised people. The pentamide for fungus is a different matter. I haven't heard of that and wonder if you're on it because of a history of fungal infections.

    I was on Bactrim the first time I took ctx, but I didn't take it last year when I was on it the second time. It was a risk, but Bactrim has been hard on me in the past and I didn't want to weaken my body with it. Dr Seo didn't get upset like I thought he would. I'm pretty good at avoiding infection. For those of you who work or live with other people (especially school-age children), the risk is much greater.
    So Sangye, I am curious as to how the Bactrim was hard on you? I take it it really wiped you out and really disrupted the intestinal flora? I live with my parents who are not in the greatest of health. They both smoke and drink and are not the cleanest people on the planet. I will ask my doc on Wednesday about taking prophylactic Bactrim while on chemo and other immuno suppressive drugs.

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    Yeah-- what you said. Just really wiped me out and messed up my gut. Both those things make you more susceptible to infection, so for me the risk outweighed the benefit.

    It's very individual, though. I'd never talk someone out of taking Bactrim while on ctx (or any other time if it helps). If you can tolerate it, it's best to take it and prevent PCP. However in your case, I don't know that adding another antibiotic is needed. You're on some heavy-duty stuff! I'd run it by both your Wegs doc and your Infectious Disease doc.
    Last edited by Sangye; 11-29-2010 at 12:57 PM.

  5. #35
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    Quote Originally Posted by Sangye View Post
    Yeah-- what you said. Just really wiped me out and messed up my gut. Both those things make you more susceptible to infection, so for me the risk outweighed the benefit.

    It's very individual, though. I'd never talk someone out of taking Bactrim while on ctx (or any other time if it helps). If you can tolerate it, it's best to take it and prevent PCP. However in your case, I don't know that adding another antibiotic is needed. You're on some heavy-duty stuff! I'd run it by both your Wegs doc and your Infectious Disease doc.
    Ya, right now they both say what I am on, the Amikacin and Clarithromycin, are enough to wipe out almost anything and adding Bactrim would be useless and might cause more problems. I was refering to using Bactrim down the road when I am off these nasty antibiotics and have this lung infection cleared up and when on ctx or any other immuno suppressant in the future.

  6. #36
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    Quote Originally Posted by Luce View Post
    Hi Marta

    Thank you so much, I know you're having a rough time but I'm sti saving my pennies so there's absoutey no rush. Zazze seem to have a sae every other weekend anyway, so I don't think I missed out.

    I ove the back, its exacty what I had in mind. However I was an idiot and for the front I actuay meant the eft side if you were wearing it (the right as you ooked at it). Woud you be abe to change the wording to either just the "Weggie on the inside" ogo or "Weggies Unite"? I reay ike what you did on the front but have aready bought the hoody with Weggie on Board on the back, so was ooking for a different sogan this time.

    Thanks so much and I hope you get a treatment regime sorted out.

    uce
    XxX
    It's done Luce. I've taken the other one off, so it shouldn't be confusing with two of them looking so similar. Hope this is what you had in mind (I was having a left-right dislexia moment - it was funny trying to get my brain around it - must be the granulomas pushing on my three brain cells) If it's not, please don't hesitate to let me know, it takes literally two or three minutes, so it's absolutely not a problem. That goes for all of you, if you have an idea and would like to see something that I haven't put up there (I still have my ideas from the hospital, but it'll take me a bit longer to put the artwork together - and I'm just catching up now) let me know. With the images I already have on there, it takes no time at all to put together a product.

    Peter, thanks for the info. That's actually quite reassuring, as it's a bit of a stressor on my mind. I'm going on a flight next week and that actually scares me a little. I think I might put on a mask for the first time since diagnosis. My mom and sister are going with me and said they'd wear masks in solidarity - I can just see the airport security now with the three masked Bulgarians.

  7. #37
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    Quote Originally Posted by marta View Post
    Hi gang,

    I've put together an outline for OUR Weggie Book. I've sent it to a few of you that I know were interested, and have requested email accounts for those who I can't send an email to via the forum.

    If you didn't get a message from me, and would like to participate, please send me a message telling me so and I'll make sure I send you the outline.

    I'm going to lay it out (that's what I use to do before I got knocked out with the WG stick) and make it something special. Or I'll do my best anyways.

    I'm thinking that we can get the thought process going, and if we give ourselves until late spring to put it together then it wouldn't be too unrealisitc....

    Looking forward to hearing from you.

    marta
    i am interested please send to me also my email [email protected]
    thanks

  8. #38
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    [QUOTE=marta;30155]It's done Luce. I've taken the other one off, so it shouldn't be confusing with two of them looking so similar.
    hi marta just a message from a soon to be poor weggie ,just ordered the new weggie girl hoodie but in tee shirt format
    first day of hubbies holiday and we have had plenty of snow last night so had to give him something to do and what better than order from weggiesunite
    my daughter asked what i want for christmas just sent her the site details too
    glad to here you are on the right road again ive just changed from a long spell of cxt but it worked for me too , now taking imuran and fingers crossed it seems to be working too
    take care of you and yours DEEx

  9. #39
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    Hi Marta

    As long as you're sure I'm not being a pain and taking up all your free time - the hoodie looks good but I'm sure on the other one the girl on the back was larger and in the centre. She seems to have shrunk and slipped off to one side!
    If you could make it a large, central pic on the back I'd be most grateful and I promise after all this hassle I will buy it - the front is looking great now (don't change it!).

    Also you may have noticed I temporarily have my 'L's back - don't worry though, this is only because I'm at work and my comedy messages will continue.

    Luce
    XxX

  10. #40
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    LOL! I'm ooking forward to your posts from home, uce.

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