Wanted to chime in to ask for some pointers. I had been doing well on ceftin & mepron the last few months and then I just plateaued. Ugh. Guess we drove the buggers into cyst form?
LLMD switched me to amox & the dreaded/loved flagyl. It's been 2 weeks and I'm still struggling.
LLMD started me on way too high a dose of flagyl, so when I got too exhausted and bad headaches, they cut my dose in 1/2.
Unfortunately, it's STILL wiping me out to the point that I can't function at all. No more headaches, though. (But in between not functioning, I have once or twice actually felt "healthy" for the first time in 10 years!!).
Is this just a side effect of the flagyl or would something like chorella or lemon water help?
I'm thinking of cutting the dose to 1/4 (will check with LLMD tomorrow - it's after hours now - of course) but I'm worried that dose might not be strong enough to kill the buggers?
Oh well. Any feedback is appreciated.
Posts: 348 | From NJ | Registered: Sep 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Maybe you can back off until you speak with him. Are you detoxing ? Epsom Salt Baths, Coffee Enemas? Do you have any Alka Seltzer Gold? If it is too much, do not push through. We are not looking for heros here. God bless and carry you through this.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
Are you taking flagyl everyday then? I know many people who pulse the flagyl. For example 2 days on, 5 days off. It can really be a doozy. We are supposed to be slowly increasing hubby to 2 weeks on, 2 weeks off for flagyl but right now we are at 2.5 days on, 5 days off! Some people just have a really hard time with the flagyl.
-------------------- IgM ++41, IND 31, 34, 39, 83-93 IgG IND 41
"To the world you may be one person, but to one person you may be the world." - unknown Posts: 72 | From NC | Registered: Sep 2011
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posted
WheelWatcher - yes - my LLMD is prescribing taking the flagyl every day.
Tried to get the alka seltzer gold tonight - my usual pharmacy didn't have it - will check out another place tomorrow.
Interesting to hear how other folks have been told to take the flagyl (i.e. pulsing, etc.).
Posts: 348 | From NJ | Registered: Sep 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I had to start with 1/4 tablet once a day and slowly increase by 1/4 tablet amounts until I got to the full 2 tablet/day amount my doctor wanted me to take. It took me about 4 months to get to the full dose.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I have been on 500mg Flagyl twice daily along with 400mg Ketek since December. The detoxing is essential. I get IMT (manual energy massage) therapy twice a week which helps enormously. I also use Epson salts baths nearly every day. I found that getting off gluten helps, too and I try to stick to that and to whole foods.I drink herbal teas.
My next plan is to try juicing vegetables (carrots, celery, parsley) and fruits. I eat very little. A protein shake with yogurt is my primary nutrition. I also take Omega 3, calcium, magnesium zinc, vit c and Florastor. We are thinking of trying a more effective probiotic.
When I stop the Flagyl for a few days my speech goes south, trembling is worse and pain goes way up. But I wonder how long my poor body can take this. I have been advised to switch to IV Rocephan but I hesitate doing it without proper support for detoxing and nutritional supplements.
So I am looking for a different LLMD who follows that line of thinking. All my docs agree that I need IV's. But simple daily Rocephan for a year does not seem right. Anyone have suggestions?
How long have some of you been on Flagyl continuously and with what results? Ketek also worries me. I think both are hard on the liver. But I am told not to take Milk Thistle with Flagyl because it inhibits its action.
My other line of thought goes to Buhner herbs. I tried Japanese wormwood and herxed too much so I had to stop it. But it probably works, right? I also am trying Cats Claw for pain....jury is still out.
My guess is that there are many elements involved in healing....both body and mind. I intend to keep working at it....as I have been doing since 1984. I did go from totally bedridden and 150% disabled to walking, reading, writing and communicating after lyme was discovered a few years ago and I got on to antibiotics.
People say I have made amazing progress. But I still am sick and unable to lead a normal life and cannot seem to manage at all without Flagyl. I hope you get some good from it and can work up to a manageable dose.
But meanwhile keep reading and learning. It is ironic, however, that this so very complicated illness is suffered by people who are too confused to read a comic strip, let alone medical research and complex protocols!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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