OK, assuming for me that I cannot be cured of lyme disease and I can only put myself in remission and be symptom free . . . what is your opinion on doing biaxin alone now, just to get rid of symptoms, and NOT worrying about "busting the cysts" with flagyl since I will likely relapse anyway. The reason is, because flagyl is very hard on me, so can I skip it this time, and just take the biaxin?
I am three days on biaxin, and it is my miracle drug, I have NO symptoms after horrific symptoms. I wonder what it means for what type of strain I have, that I am so responsive to biaxin. Any ideas?
So my question is that we all have different goals. I've given up on curing myself, I just want symptom free days and "remission". Do I really need to do the flagyl and fight to get those "cyst" forms?
Do I stand to build up a resistance to biaxin?
Can you give me your educated opinion on any good or bad things of just treating symptoms through biaxin alone? I trust all your opinions more than any doctor I could see here.
THANK YOU!
Posts: 69 | From Washington | Registered: Jan 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there searching..
I am pretty much in the same boat as you are. My basic idea is to hit the symptoms I am having at any given time with an antibiotic made for that set of symptoms... or one I have had good luck with in the past.
I was prescribed different antibiotics at different times over the past 20 years.. and some showed NO improvement. To me that is a waste of time, money and I feel it can't be good for my body.
I am VERY antibiotic sensitive.. and my goal is to only use what I MUST (low dose- one at a time).. and use it till my symptoms lighten up... then give my body a rest.
It seems to work for me.. and I have used doxy nearly every year.. and it always works even though I have used it for over 20 years.
At times I use penicillin.. and when I do it helps a lot too. And the next time I use it.. it helps. So I don't notice it becomes ineffective and I don't see any of this "antibiotic resistance" the ducks are always quacking about.
I also don't end up in the hospital by dosing too strong for what my body can handle. In the past.. year after year.. I would be in the duck motel .. sometimes 7 times a year when given what the DUCKS said I needed rather than what had helped me before.. and what worked before.
I am NOT a doctor and this is NOT medical advise. Just sharing what I think works best for me.
posted
kay, i'd like to suggest you edit your topic line by clicking on pencil icon in 1st post; then add BIAXIN users input needed! **********************************
now when folks skim the topics, if they are on biaxin, they'll click on your link to assist you.
posted
I really would appreciate if someone would highlight this as "biaxin users" and maybe I can figure out why it works so well for me, and what does it mean. Amoxy does nothing, Z-pak does nothing, then I take biaxin and BOOM, no tingling, no numbness, no heart racing, no brain fog, no muscle twitching, no inability to speak or find words. It is truly my miracle drug. But why?
Tincup, I absolve you of all liability, I promise . . . I know you are not a doctor. But please help me with this. I'm currently taking 1,000 mg a day of Biaxin which is a dose that anyone with an ordinary infection would take. Should I be lowering the dose and finding the lowest dose possible that rids me of the symptoms? Or should I take this regular dose until I don't have symptoms for a month or two and stop, and see what happens?
What is your opinion based on how you treat yourself?
At this point, I am just so glad something works. I cried in bed last night (I know, I'm a big baby) because after a year of twitching muscles and numb arms and legs at night, and no way to sleep through that, my body was silent. Biaxin is my miracle!
I want to do what is smartest. Help me out! Also, can you tell me what antibiotic seems to work for which symptom you have? And how low of a dose do you give yourself, like how much amoxicillin do you take a day and for how many days in a row?
The only side effect I feel from biaxin is a real bizarre aluminum type taste in my mouth. I can deal with that.
THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU!
Posts: 69 | From Washington | Registered: Jan 2007
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posted
My son was taking biaxin without the flagyl for awhile. He was taking another ABX with it but I can't(not flagyl)remember which one at this very moment. If it comes to me later I'll let you know. It might have been amoxicillin.
Posts: 547 | From Maryland | Registered: Mar 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Searching,
I'm throwing in a wrench. Are you sure that the symptoms you describe would be there if you stopped the Biaxin and took nothing?
Is it possible all the symptoms that bother you on the other abx are a herx? Or, maybe even side effects of those abx?
I just want to make sure you have considered that. I personally had a major herx on Biaxin. It was mostly pain, muscle pain in my legs. Likely due to Bartonella.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Biaxin did wonders for me and put me in a few years long remission where I could actually resume a life.
Good luck to you!
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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posted
Magic Acorn . . .how long did you take it and when did you stop? Did you take anything else with it?
Posts: 69 | From Washington | Registered: Jan 2007
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posted
Aniek, I appreciate your brainstorming with me. It is definitely lyme symptoms, because I've been dealing with this for a decade. It is tingling, numbness, muscle twitching, inability to think right. I take biaxin and it just disappears. It is so bizarre, and I just don't get it. Maybe it makes the lyme revert to cyst form instantly?
I probably have a herx of some sort, my throat is so sore for one, but who knows if it is related.
If I'm not herxing, and the symptoms just subside, what does that mean?
Posts: 69 | From Washington | Registered: Jan 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
To your original question, I don't know. I wanted to say my LLMD has me on Plaquenil for the cyst form .... maybe you wouldn't react as badly with it.
I'm also on Biaxin,and a bunch of other stuff.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I just started Biaxin on Thursday night. I am also on 1000 mg a day with nothing else. The doc said in 1 month she would add plaquenil to it if I can tolerate the Biaxin.
I felt emotionally horrible yesterday. Probably the worst that I have been since March. I could barely work and needed to take 1 1/2 Ativan just to not feel so low. Although the burning/stinging pain was much better. Unfortunately today, the leg pain is back, but emotionally I am better. I have noticed an increase in my twitching and eye pain for the last week, even before I started the Biaxin.
I don't seem to respond with big bad herxes nor do I feel better. This has me continually questioning this whole diagnosis... Why doesn't anything work for me!!!!!
Posts: 157 | From connecticut | Registered: Feb 2007
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posted
Tonysgirl...just wanted to jump in here and tell you that I don't have huge herxes either. My LLMD and I have spoke alot about this and he doesn't seemed concerned. You can PM me if you would like to talk about this.
posted
Tonysgirl, it could be the antibiotic. Some here swear by amoxicillin and it does nothing for me. But biaxin does. Biaxin does nothing for others. Could it be the strain? I heard there are over 100 strains of lyme. I know in Europe, lyme disease is very different (actually worse) than here. I'm just guessing, because I don't know, but give it at least three months if you possible, to see if it actually works.
I know if you are feeling different whether it is better or worse, it must be doing something.
I question my diagnosis all the time, it is hard because we just wonder why antibiotics can't knock this out. Yet I know I'm very sick without them.
Keep looking up, keep strong, and see what the next three months does.
Posts: 69 | From Washington | Registered: Jan 2007
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