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    Old 02-04-2005, 06:37 PM   #1
    ncgirl88
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    Question Mepron Again...

    Hey Guys, Just me...ok, I am two days out from the day I was supposed to start up my meds again...Because I was away and had to drive myself home and because it seems I am in a permanent herx most of the time decided to wait until I was safely home...

    The clinic I see wants me to go on Mepron for a second round (my first was in November) because Babesia can come back...I think they did a liver enzyme check December and things were fine...I have a script to go to a local doctor and have them checked after this round with the Mepron...

    I spoke with a woman who worked at Glaxo at some point - she had talked to both a chemist and some other guy and they both claimed that one month was enough for babesia and that Mepron can be really hard on the digestive tract and you can risk organ failure by treating too much (of course I did not pin her down on how much is too much) but it was infered that one month is enough...this is a woman that has lyme that worked for Glaxo before getting sick that gave me this info.

    Then I know that many Babs/Lyme patients say that it does come back on you - I have had a couple nights of night sweats, my arm pits seem to sweat and it doesn't correspond with activity, not very dizzy if at all though, the heart is pounding at night and the insomnia is coming back after a week and two days of no abx's...I was the one pushing for more Mepron but now I am second guessing my request...

    Anyway, opinions please
    Thanks!

    Last edited by ncgirl88; 02-04-2005 at 06:53 PM. Reason: Decided I shared too much...

     
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    Old 02-04-2005, 07:18 PM   #2
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    Re: Mepron Again...

    Sounds like your on the right path NCgirl let us know how things go. Good health to you!

     
    Old 02-04-2005, 09:07 PM   #3
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    Re: Mepron Again...

    Hi ncgirl88. I am sorry the Babs symptoms are back. From my own personal experience and correspondence with others, I have never heard of one month's treatment taking care of Babesiosis. I and many others that I have corresponded with took Mepron long-term to eradicate the Babs. I have not had any ill effects that I know of from doing this.

    Did this woman also have Babesiosis? It could be that she is going solely by the literature and possibly outdated information, just as many non-Lyme doctors believe one month of treatment is long enough for Lyme. I would listen your doctor's advice. I am sure he has a lot of experience with this treatment.

     
    Old 02-05-2005, 06:39 PM   #4
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    Re: Mepron Again...

    Thanks for the words of encouragment and help...Mepron just scares me - probably the color It just isn't natural ingesting something the color of a highlighter pen...I am hoping that it is highlighting the way OUT of my body for the Babesia... the little &$%(#@*%...I am sure you all have your own names for the little protozoans...

     
    Old 02-06-2005, 07:53 AM   #5
    samaya35
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    Re: Mepron Again...

    Hello NCgirl88 & Especially Ticker,
    This subject has raised a dilema. The dilema has to do with questioning the treatment protocol of a LLMD clinic that Ticker in the past has alluded is an excellent LLMD. He is Dr J.
    The staffs treatment has been of poor quality. I have seen the Dr only once in 3 months and have no way of communicating with him. I will not have another appointment with him until 3/28. I was able to once by typing a letter and then having someone deliver it to him.
    Now the Mepron is arises, as yet another issue. I have a Coinfection B Minicoti and I understand that many Drs recommend treatment of the B Minicoti first even before the massive Chemo. But I just started the Mepron after 2 months of therapy. Second, I finished the most of the bottle in about 3 weeks because I spilled some of it. I called the PA. She said that one bottle of mepron was enough and that the prescription will not be renewed.
    I am an introvert so it is very difficult to handle this situation.What I really want to do is just put my head under the covers and let this and all the other problems just go away!

    Tks

     
    Old 02-06-2005, 12:02 PM   #6
    ncgirl88
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    Re: Mepron Again...

    Samaya - and here in lies my question...I am getting different answers from different staff members...it is making me a bit nervous...I wonder if it is a matter of protocol changing back and forth because the fact they are always changing and there is no official protocol or what...it is a bit disconcerting for me. I started the mepron this morning...I had heart flutters with in 30 minutes of taking it and now I am starting into my weepy mode - probably hormones...

     
    Old 02-06-2005, 05:04 PM   #7
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    Re: Mepron Again...

    Feeling better now as the day wore on. I am proceeding with the treatment as prescribed...I realize that it takes a bit of time to figure out what abx will work best...I trust that the NP is getting her orders from the doctor and I am assuming that he is signing off on my treatments...I will be finding a GP that they recommended in my area too that understands lyme and hopefully can work with me locally so I have another doctor to help me along.

    -ncgirl

    Last edited by ncgirl88; 02-06-2005 at 05:10 PM.

     
    Old 02-06-2005, 05:21 PM   #8
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    Re: Mepron Again...

    Hi samaya35. I am very sorry to hear that this doctor's staff is not helpful. I wonder if the doctor is aware of this? By chemo, do you mean the IV antibiotics?

    You also have Babesiosis? What did you take in addition to the Mepron?

    It sounds to me like the staff is overwhelmed with cases. You need to be able to get in touch with the doctor when necessary.

     
    Old 02-06-2005, 05:23 PM   #9
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    Re: Mepron Again...

    Hi ncgirl88. I don't blame you for being nervous. It sounds to me like they may need more help in the office. Again, I wonder if the doctor is aware.

     
    Old 02-06-2005, 06:18 PM   #10
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    Re: Mepron Again...

    Hello NCgirl88 & Ticker,

    Just got back from our monthly Lyme Support meeting. There were about 50 people in attendence and each person has a chance to tell their story. Some people cannot return because they become so depressed upon hearing the cases.
    But I go because I feel that imn my small way I must be there to offer the support and advice that I have received at the meetings & on the boards. And yes I do give out the healthboards URL. I know that they will find the help they need only in supportive, compassionate and encouraging message that healthboard /lyme continually gives. As a matter of fact, I try go mimic the message that Ticker gives. Sympathy with the person, direction to a good Lym Specialist and encouragement to keep fighting.
    Now I am going back under the covers and hide again!

     
    Old 02-06-2005, 08:14 PM   #11
    ncgirl88
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    Re: Mepron Again...

    Samaya - I am glad you were able to attend your meeting...and good for you...supporting others - I know it is not easy - it can be depressing at times that is for sure...but I do believe that I am going to make it through this and I am praying that I am well...Gotta keep up the hope...I do think of other's here and everywhere that have gotten hit really hard by this disease and it's associated illnesses/diseases...I have to hope that they are still hoping - still praying for a miracle because they do happen...

    I am sorry you are hiding a lot under the covers these days ;( I hope better days come your way...I am sure in the next few days I will be there too since starting up the treatments again...praying that this round will be different though...Take care my friend!

     
    Old 02-07-2005, 09:00 AM   #12
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    Re: Mepron Again...

    NC & Samaya,
    After reading thread, just wante to let you know that my heart aches for you both with all the feelings of uncertainty compounded by not being able to be supported by the one that has prescribed dosages, etc. I am sorry you are both in this perdicament (if I'm reading/interpreting your posts, correctly).

    Ticker's question is so important... Does doc know that patients are experiencing these struggles?

    Even though you are feeling miserble, may not feel like a Goliath at the moment, I encourage to do whatever works best for you to begin communicating this to the doc. Journal it down for starters. Right him a letter. I wonder if there is an office manager that might be patient-focused and want to know of your situations...

    Even if you're not sure you will ever deliver 'message', atleast address to the doc in some form. For me, it sheds light on situation and helps me realize whether my senses of situations are valid, need tweaking, the best TO communicate info to intended person, if I decide to do so.
    My sense is, you have something to share that your doc would want to know about.

    Really just wanting to encourage both of you. When I hear your stories, they make perfectly good sense at the heart level. Blessings, cj

     
    Old 02-07-2005, 09:43 AM   #13
    samaya35
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    Re: Mepron Again...

    Hello ncgirl88 cjFTWORTH,

    Thanks for the support.

    Actually I had to get out from under the covers because I had a reaction all night that felt like poison ivy was spreading all over me! Itchy Itchy Itchy.

    Cj you have mentioned something that I have very important. One of the reasons that I have been ineffective in communicating to the Dr is the overwhelming needs of just setting up appointments flights and fighting for insurance coverage. All of which are still up in the air.
    So I have found the solution is to make lists. A list for Treatment , a list for nutrition and supplements , a list for daily medications up to 51 pills a day plus 5 hours of chemo therapy (antibiotics)
    You are right the lists help organize thoughts and make sure that major issues are being covered.
    Now to compose the letter to the Dr!

     
    Old 02-07-2005, 10:42 AM   #14
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    Re: Mepron Again...

    Samaya:

    Relating to your need for lists: I can understand well, the necessity - and also the security of having lists. Before my illness, I was definitely a "communicator and an organizer" and at the beginning of my illness, I had to resort to lists and colors to help me remember and accomplish even the smallest things. To this day, I have very little sense of "time" - I easily lose years in remembering things. I've found that for me, keeping certain things "to do" or "follow up by...date" or "ask people about..." in colored folders (red for Urgent or Time related, Yellow for checking out and completing fun and enjoyable things, blue for relaxed "to do" things...) with a list on the front of the folder and place them in an elevated metal holder so that I can see all folder headings at all times, in a place that I look at often each day.
    LOL I know it seems complicated, but it really does help me to be able to focus only on what I have to do immediately (that day or the next) and I can feel secure knowing that I don't have to attend to the other folders right away. It also makes me secure that I can have the energy and focus to handle unexpected things that arise. I also live out of baskets that are sorted so I can get to items easier i.e., today's mail, priority mail (time dated), bills, medical related, current year tax info, and I make myself file the items in the right basket or folder IMMEDIATELY. LOL It makes for a cleaner brain....Hope it's a small help!

    I know this is very wordy..LOL, that's me. Now that I can talk and put reasonably understandable sentences together, "my cup runneth over"!!!

     
    Old 02-07-2005, 10:46 AM   #15
    outinthe_woods
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    Re: Mepron Again...

    Samaya:

    Relating to your need for lists: I can understand well, the necessity - and also the security of having lists. Before my illness, I was definitely a "communicator and an organizer" and at the beginning of my illness,

    I had to resort to lists and colors to help me remember and accomplish even the smallest things.

    To this day, I have very little sense of "time" - I easily lose years in remembering things.

    I've found that for me, keeping certain things "to do" or "follow up by...date" or "ask people about..." in colored folders (red for Urgent or Time related, Yellow for checking out and completing fun and enjoyable things, blue for relaxed "to do" things...) with a list on the front of the folder and place them in an elevated metal holder so that I can see all folder headings at all times, in a place that I look at often each day.

    I know it seems complicated, but it really does help me to be able to focus only on what I have to do immediately (that day or the next) and I can feel secure knowing that I don't have to attend to the other folders right away. It also makes me secure that I can have the energy and focus to handle unexpected things that arise. I also live out of baskets that are sorted so I can get to items easier i.e., today's mail, priority mail (time dated), bills, medical related, current year tax info, and I make myself file the items in the right basket or folder IMMEDIATELY. LOL It makes for a cleaner brain....Hope it's a small help!

    I know this is very wordy..LOL, that's me. Now that I can talk and put reasonably understandable sentences together, "my cup runneth over"!!!

     
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