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    Old 11-17-2005, 07:52 AM   #1
    cjFTWORTH
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    Exclamation Question About Flagyl Med Combo - Urgent

    Hi all,

    Began Zithromax, 500mg, 2x daily about 2 weeks ago and did fine on that. Added Flagyl about 10 days ago, 1/4 pill, built up to 1 tab, 3x daily and actually handled that quite well - for several days.

    On Monday, I 'recognized' that I felt like I'd been run over with mack truck. I have been extremely weepy. Neck, back, shoulder/arm (that already hurt)... so it was hard to tell what was what... but all was worse for sure. Like old times, vice grip stuff.

    And increased nerve stuff in right arm, cold hands, etc. which I'd read to watch out for with Flagyl.

    So I went off meds on Monday and not sure when to start them back, still feel cruddy today.

    QUESTION: Zithromax is very expensive. I've perused internet/our posts, etc. and haven't seen mention of combining flagyl and ceftin. Does anyone have input on that? Or just input on Ceftin... It was much less expensive, very easy to take and I felt good on it...

    Also, recommendation schedule on pulsining the flagyl.. I know everyone's is different but would appreciate feedback...

    Thinking I'll at least go back on zithromax today... in a quandry though as I need to order more of SOMETHING... which means I need to ask for a refill and then go thru Canada... time involved so I need to ACT.... zithromax or ceftin??? with flagyl???

    Thanks guys...

    Also, I had to order ceftin from local pharmacy while waiting for zithromax to come in...

    IF i run out of zithromax this time, is there a problem with me 'short term', switching back to ceftin, then back to zithromax??

     
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    Old 11-17-2005, 08:14 AM   #2
    Roman77
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    Re: Question About Flagyl Med Combo - Urgent

    sorry cj...wish i knew what to say to help you out. all i can say is that the weepy, sad feelings were something some one on here warned me about a few months back...luckily i haven't come into that b/c i think my dose is too low. sorry that i can't remember who, but they suggested a B vitamin, i think B 12? in order to help combat that. hopefully someone will know more to help ya out.

    glad you did decide to take a break from the meds. my only suggestion about the flagyl would be when you restart it to maybe stay at just one tab or maybe two for a week or two to see how you handle it long term. if you don't feel so cruddy and feel semi decent keep at that level for a bit. like dr c says slow and steady wins the race. so far i haven't been able to handle any more than 1/4 tab every other day, but i'm happy with it since i just continue to feel better and better each week. hopefully you'll find a combo that works for you soon. i'll be keeping ya in my prayers.

    shanna
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    "Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

     
    Old 11-17-2005, 09:56 AM   #3
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    Re: Question About Flagyl Med Combo - Urgent

    cj, I'm sorry you're suffering this way! I know you are looking for answers, but the only way to get them is to try different things and see what works for you. My experience has been that zithromax and flagyl are the best things I've been on. Ceftin did absolutely nothing for me, it felt like I was just taking a sugar pill. No good.

    Flagyl made me weepy too, but then I took the B12 with it and did much better. Continue to detox because that will help with the symptoms.

    I take zithromax and it is really so expensive, I understand that you want to try other things. I keep trying other things too because I get sick of spending so much money, but I just keep going back to the zithro because it works so well. I just picked up a months supply at costco for $450.

    We are going to get better, cj. We will not have lyme forever and we are going to get our lives back. You hang in there!!!

     
    Old 11-17-2005, 02:44 PM   #4
    TINUVIEL
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    Re: Question About Flagyl Med Combo - Urgent

    Hi cj,

    Sorry to hear you'd been feeling so bad. Flagyl can be a difficult med to tolerate but it is very effective and as far as I know just about the only thing that will kill L form and cysts.

    Almost everyone I know who takes it reports feeling more emotional and just "not right" while they are on it, don't know how much of this is the med itself and how much is from die-off. In any case, I've come to understand that this is just part of the process and that helps get me through Flagyl week. Incidently I take it for one week of every med rotation which by the way has proved to be extremely effective.

    As for what meds to take, I wouldn't deviate from the instructions your doctor gave you as to how to take the meds and which ones to take. If you find you just cannot tolerate them, is there any way you can contact your LLMD? Different meds do different things and without knowing exactly why a certain one was prescribed at a certain time you may unknowingly set back your treatment by altering your regimen. According to Dr. B, the three worst things for Lyme patients are 1) non-compliance with meds 2) alcohol consumption and 3) insufficient sleep.

    The symptoms you described while on Flagyl sound about right (not fun, just typical based on what I have experienced previously and from what others have told me). Some things which have helped: Ginger Wonder syrup from New Chapter especially mixed with soda water and also Pau D'arco herbal supplement (a deep cleanser of the blood which has helped profoundly with the detoxing). Apart from that, just riding the storm out so to speak and of course drinking gallons of water and trying to rest as much as possible.

     
    Old 11-18-2005, 08:19 AM   #5
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    Re: Question About Flagyl Med Combo - Urgent

    thanks for the feedback all...

    to clarify why i'm asking about combos...

    when I left crist's office in august i had 3 abx scripts plus nystatin...

    was to take each one till i plateued...then switch.

    one snag with that for me is that i order from canada so i have to stick to a month at a time and order enough in advance as to not run out... the savings is sizeable so i really do feel restrained by sticking with canada. again, no insurance.

    so i took ceftin, coming off doxy which i'd been on for MONTHS... i actually did very well on ceftin.

    By decision was, to stay on it, or try next med... so i read up on zithromax and oddly enough, Burrascano's 2005 update wasn't very positive on it as a monotherapy.

    Knowing I would need to get to flagyl eventually, and that many took it as a combo and that Crist, from reading his literature, prescribes it in combination with others, I decided to ask his office if I could do so, which they agreed to. But they didn't give any specific directions. His philosophy is to go off meds when herxing... So I went off Flagyl and Zith on Monday and added the Zith back yesterday....

    Just wondering how many people take Flagyl. non-stop? I can tell my body is not going to tolerate that too well... at least I think I can predict that, maybe not.

    I felt like a was tolerating it extremely well. Until AFTER I was up to full dose for a few days... then it hit me and yesterday was probably the worse. Like something stabbing my neck, arm... and the numbing in arm as well. And terrible back pain in night.

    I managed well last night because i took a flexeril which for me is a total knockout and next day, zombie land... therefore, seldom, seldom take even a 1/2 a pill.... but hurt so bad by the time i got in bed i was definitely up for it... regardless.

    So that is why I was interested in some different flagyl users pulse schedules... I might do the homework here, find one that sounds most palatable and then call his office and run it by them... now that i know i'm paying for such call, I'd like to keep them short, and few.

    TINUVIEL, would you clarify what you mean by, 'one week of every med rotation which by the way has proved to be extremely effective.'

    and

    sleeperwoken do you take your every day?

     
    Old 11-18-2005, 08:59 AM   #6
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    Re: Question About Flagyl Med Combo - Urgent

    I never take a day off from antibiotics, but I don't take flagyl for more than a week at a time. I just rotate to other things. Right now I take zithromax and plaquenil for a week and then switch to flagyl for a week. The flagyl used to really mess me up, but now I can take it with no problems. Each time I took it, it was easier and easier. It's no problem now.

     
    Old 11-18-2005, 09:10 AM   #7
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    Re: Question About Flagyl Med Combo - Urgent

    sw,

    as always, thanks so much for your reply...


    is plaqueril also kind of in a class by itself, like flagyl? do you see it as key to your healing... seems like i've read that before...

    also, do you mind sharing current doses, when you take them...

     
    Old 11-22-2005, 11:19 AM   #8
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    Re: Question About Flagyl Med Combo - Urgent

    bumping back up to top...

     
    Old 11-22-2005, 03:58 PM   #9
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    Re: Question About Flagyl Med Combo - Urgent

    Quote:
    TINUVIEL, would you clarify what you mean by, 'one week of every med rotation which by the way has proved to be extremely effective.'
    Hi,

    My LLMD uses a pulsed, rotating regimen. I take a combination of 2 abx for a 3 week period, adding Flagyl twice a day during the third week. The fourth week I am off all meds and after that the cycle starts again with a different abx combo. The only time I don't take Flagyl is with the Mepron/Zith/Clinda combination (which is very helpful). This is making a really big difference and as I said it is proving itself to be VERY effective.

     
    Old 11-22-2005, 05:01 PM   #10
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    Re: Question About Flagyl Med Combo - Urgent

    Hi Tin:

    Glad to hear your proto is working well for you...congrats:

    Can you detail it out a bit more for a lame brain like me:

    Week 1
    Week 2
    Week 3
    Week 4

    Which abx combo are you taking each week.

    Are you treating for coinfections too?

    I guess so since you're taking mepron. Do you just take mepron for 1 week then cycle on to something else or do you take the full 3 week course.

    Are you seeing Dr. Crist too?

    Thanks for your input and advice....working hard out here trying to get well.

    I'm currently on iv zith and mepron...for the next 3 months or so, is what the doc said...wondering if I need to talk to them about this rotation type proto. I have all the co-infections.

    Did you ramp up on the flagyl. I have a really, really hard time with that drug.

    Warmly, Lisa

     
    Old 11-22-2005, 08:22 PM   #11
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    Re: Question About Flagyl Med Combo - Urgent

    right now my med regimin is:
    week1 minocin, septra DS, plaquenil
    week2 minocin, septra DS, plaquenil
    week2 minocin, septra DS, plaquenil and flagyl
    week4 off all meds

    and then my next cycle i use different meds

     
    Old 11-22-2005, 09:26 PM   #12
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    Re: Question About Flagyl Med Combo - Urgent

    tinuveil,
    thanks for the reply... sounds like your doc is on top of it, for sure...

    sweet dreams, cj

     
    Old 11-23-2005, 11:07 AM   #13
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    Re: Question About Flagyl Med Combo - Urgent

    Shaynesmom,

    This is the regimen I'm on this month:

    Week 1: Zith/Mino + Artemesisin
    Week 2: Zith/Mino + Artemesinin
    Week 3: Zith/Mino/Flagyl + Artemesinin
    Week 4: Off meds

    Next cycle repeats with different meds (the Flagyl remains the same, 2x a day for Week 3 of the cycle). As I mentioned, I don't take Flagyl with the Zith/Clinda/Mepron combo, I just take that one for the 3 weeks with Week 4 off meds.

    Yes I am being treated for co-infections. Definitely Babesiosis and my doctor suspects Bartonella. One thing I should mention, if you have Babesiosis and have not tried Artemesinin I would highly, HIGHLY recommend it. I was at first very skeptical but adding this (I take it during the 3 weeks I take the abx and stop taking it during the week I'm off meds) has made a tremendous difference.

    Artemesinin is a herb and is recommended by the World Health Organization as the first choice treatment for drug-resistant malaraia. It is quite fascinating, the way it works is that it contains in its molecular structure a peroxide group. When the molecule comes into contact with high concentrations of iron (such as in the red blood cells where the Babs organism hangs out) it "explodes", releasing free radicals and thus destroying the Babs.

    No, I'm not seeing Dr. C, my LLMD is in NC. Not sure if they do the rotations if you're on iv. My LLMD is starting me with orals in these combinations so we may not need to go to iv. Perhaps because of the high doses or the rotations, but it seems to be working even though I've been infected for a very long time. He did say though that we may need to go to iv at some point but he wants to get the co-infections under control first.

    Flagyl can be difficult to take. The fact that it's only for a week makes it so much more tolerable, and I think the theory is that that is when the cysts are forming anyway. As for the nausea, I use ginger syrup and sparkling mineral water, that really helps. The ginger syrup is by New Chapter and I use any brand of mineral water though I prefer pellegrini. Apart from that, lots of water, detox baths, taking it easy as much as possible.

     
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