It helped me big time the first time I used it. However, this time around it really killed me. But that may have been a good thing I guess.
For me, it either caused the worst herxing I ever had or I had an allergic reaction. Whatever it was, I'm not in a hurry to try it again.
My advice, go slow just like you are planning.
All My Best, Scott
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I experienced a gret deal of depression on flagyl and had to switch to tinidazole. Still some depression with Tini but no where near as bad.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Well, let's put it this way.
I thought I was "cured."
I treated for about 5 months - Doxy, high-dose Amoxy, a month o' IV, you name it. I was doin' grand, more or less! I said 'Hey doc, I'm doing pretty good, other than fallin asleep and stuff, no more headaches every day, life is GRAND!!! CAN WE STOP NOW????"
Doc said: "Er, well, we haven't addressed the CYSTIC FORM of Lyme yet."
I said, "Well, er, I prolly don't have any of that. Ha ha."
Doc said, "Here, take these Flagyl, 250 mg 3x per day (and that's a mild dose), if you don't have any cystic form you'll be just fine."
For approximately the next six weeks my head shrieked nonstop in varying degrees, but mostly in the shoot-me-now variety. I honestly thought I was all past that.
Once I even caved in (which I really hate) and took a three-day break with permission.
The head pain let up two days before I came limping in for my next LLMD appointment. (Kind of like your car stops making that noise as soon as you drive in to the mechanic's to check it out.)
I HATE FLAGYL. For more reasons that just the deprivation-of-Chardonnay aspect!!!
But it's good stuff.
Hope it treats you kindly, Heather!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I took flagyl for three weeks in 1500mg for the first week and then 750mg for the next two weeks. Then I completely stopped it-for a month-but I will need to go back on it soon.
Something I wasn't aware of was that there's a difference between herxing and relapsing. I was really sick on flagyl to the point that I was vommiting everything I was eat, horrible headaches, neuro pain (which i had never experience), VERY low energy, and lots of back pain. It's normal to have flu-like symptoms but if you can't function normally then you should really stop the medication. Unforchunetly, I thought I could just "push" through it and ended up compromising my immune system. I have to wait until my Immune sys is strong before I can go back on the meds. I don't think I will go back on flagyl bc of the neuro symptoms but I will go on tinidmax (most likely).
Please let me know if you have any specific questions. The first few days on flagyl I didn't notice much of a difference and then it hit me like a ton of bricks!
Good luck!!! Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
hi heather - flagyl is one of my favorite drugs. i had two ileus' (gut shut downs) and flagyl finally brought me out ot it. once i started plaquenil and biaxin i started to pulse flagyl and that's when the herxes started - gut cramping, increased fatigue - now i mostly stay on it along with the others. good luck, deb
Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Thank you for the great replies.
So far so good on day one. I have a slight strange headache.....
I'll update as things happen.
I love this board and everyone on it.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Flagyl gave me peripheral neuropathy and I had to switch to tinidazole instead.
Really had to start out slow. No point in having my head blown off. That is how tini/flagyl affects me, mainly terrific headaches. So, low dose better than no dose, and ramp up when possible.
Posts: 8430 | From Not available | Registered: Oct 2000
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Good luck on the cyst busting flagyl. I have had migraines since I was 15 years old. For the first time in my life with the help of tX and flagyl I went the longest stretch ever (ten months) without a migraine. Of course before the long stretch flagyl gave me the biggest migraine I had ever had.
For me I had one migraine that sent me to the ER. It was my second round of flagyl and only third month of tX for me.
I had lyme, ehrlichia hme and hge and babesia. I had treated babesia the first month then started flagyl for a week at the last three weeks of tX.
I went through the first round fine...the second one was rough. Woke up with a migraine from hell. Eyesight was coming and going - I lose periferal eyesight...dizzy, numbness in face, tongue, hands...felt like I was having a stroke.
Went to the ER and they drugged me up - It took the rest of the day before the migraine kept cycling. I stayed on tX for another eight months before I ever had another migraine. So I know it was a herx.
Eased up on tX lately and went thirty five days without abxs...2nd day of flagyl had a migraine although less severe still accompanied by numbness and eye sight stuff.
Two recommendations...No aerobic exercise while on it (not supposed to anyway but I cheated and paid for it) and LOTS of WATER...you do not want to become dehydrated while on it plus of course you want to keep it moving through your system...don't need kidney stones.
Take care and keep us posted...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Just tired and achey. Really barely got anything done today.
Still only on 2 pills per day. Need to go up to 3x per day. I'll do that on monday.
WAHHHH! Whaa whaaa!
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi Robi, I just wanted to ask you a little more about your experiences with Flagyl and depression. I started taking it a few days ago (only taking a quarter of a pill so far--I go slowly) and feel totally depressed afterwards--like I can't even move or smile, almost catatonic like. Was this similar to what you experienced? I am taking such a small dosage that I hate to jump to conclusions, since the depression could be from a number of other things. However, it just comes on so suddenly and severely. Anyway, let me know what you think. Thanks, Carrie --Also, is the tinidazole in the same family and does it cause similar problems?
Posts: 13 | From Downingtown, PA, USA | Registered: Jan 2003
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Did 3 pills today. I know I'm brave.
So far so good. Just tired.
More tommorrow.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
increase in symptoms, gums and tooth socks, left side; new symptoms; symptoms due to side-effects of the drug. numbness and tingling,which upon their appearance, i immediately stopped the med.
major breakthrough, in emotional lability starting a week or two after its course.
rash outbreak on shins, gone week(s)? after cessation.
produced a depressive state, gloomy, dark mood. beware.
Posts: 2708 | Registered: Feb 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Tinidazole is "next generation" and is reported to have fewer side effects.
More costly, 'natch. A LOT.
You do know...Absolutely NO ALCOHOL while on this, right?
If you drink and Flagyl/Tini...you WILL end up in ER.
Keep the probiotics up..lots. One hour before meals with a full glass of water.
May take more than one "round".
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Thanks for the info everyone. I'll keep up on my probiotics more dilegently.
PAIN, PAIN, PAIN!!!!!!!
Did I mention I'm in flippin' pain?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Today was a little more bearable. Do you think I'm getting used to the pain?
In Pain and sleepy.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
IMA?
What's going on with you?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Flagyl would have killed me or landed me in the psyche ward, probably permanently, if I'd taken the LLMD's dose of 500mg per day.
I took 1/8th of a 250 mg pill first day and did ok-could feel it working on head/brain? tissues, next day 1/8th again and did ok, then on third day tried 1/8th am and 1/8th pm. All hell broke loose. I was in bed with covers pulled to my ears, shaking, scared to death, sounds were horrific. Was someone breaking into the house??
Stopped Flagyl. Next day I was ok as long as I stayed home and things were quiet, then I drove my car and immediately thought I was inside a jet engine! My anxiety was so acute that my chest felt like I'd stopped a speeding car with it. Made it back home driving very slowly and concentrating with all I had, hands cramped on the steering wheel. Debated calling 911 for the chest pain.
Called doc's office. LLMD's nurse said the chest pain was just the Lyme (It wasn't.) and to go back on Biaxin. On Biaxin, just one 250 mg, all of the above happened again, just as acutely. I wound up sleeping (trying to sleep) with my large breed dogs at night. I trusted them to interpret the sounds I could not.
I have since tried Tini and did ok on it, but had to start small. Ramped up to one 250 a day over a few weeks. Stopped to add abx for a while, then back to Tini eventually.
The Flagyl experience left possibly permanent damage to what had been my good ear, the ear without hearing loss and miserable tinnitus. The new tinnitus in the newly bad ear is totally different from the tinnitus in the ear that's had ringing since a tick bite BL on the lobe in 2001.
This Flagyl drama illustrates how profoundly bad herxes can do lasting damage from which you may not recover. Flagyl can build up in your system; it is not passed well through a damaged liver. Tini does not have this caveat. BEWARE of Flagyl!
Posts: 422 | From Luck home | Registered: Sep 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Thank you for the warning.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I tried flagyl in 2002 and this is gross, but for REAL: It gave me a perirectal abcess.
No one understands this to this day. No one. Not a single doc can explain how, on major ABX, I developed an abcess next to my rear end.
Every LLMD raises their eyebrows and says, now REALLY? it is supposed to BREAK cysts, not cause them. But for some reason it caused this one.
I have had problems there ever since. lovely eh?
The treating doc at the time (LLMD) had me stop the flagyl and get shots of Rocephin until the awfulness, the swelling and fevers and flu-stuff went away. It hurt like the DICKENS.
Never tried flagyl again.
I might have to this year, but hoping the tini might do me better?
Never heard of this from anyone else, so you're prolly not in danger of it. Only my A**!
Glad you've moved on from the golden goop Heather! And thanks for the photos! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
i'd not take probiotics at the same time as any antibiotic, but staggered in time, 4 hours away from the antibiotic.
when i called a pharmacist and asked about probiotics with ceftin, she said take it 4 hours after/before teh ceftin, and she said so in a forboding tone.
so i extend this advice to any antibiotic i take.
Posts: 2708 | Registered: Feb 2005
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posted
I've taken flagyl many times for Lyme. The thing I found was starting on a low dosage and building up. I start 750 mg. twice a day this weekend and using minocycline during the week.
No problems except for herxing and it is tolerable. Hope you have the same good results as I have.
-------------------- Debbie V. Posts: 125 | From Louisiana | Registered: Oct 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Trails,
I love you.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Miserable pain. Hands, arms and shoulders heavy and in pain.
Worked 6 hours today. It's slow so I don't have to go for the rest of the week.
Thanks Vandeb & PQ
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Maybe you're herxing Heather.....at least you know the Flagyl is working.....hope you feel better soon
-------------------- Debbie V. Posts: 125 | From Louisiana | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hi Heather!!! I have been on flagyl well its generic Metronidazole and one thing I can tell you is it says doNot drink alchohol while on this it sez sever reaction ie sick in the stomach and throwing up. Which I ignored a couple of times and got a little quezy but never through up but I dont throwup easy anyway.
Other than that I didnt feel to bad on it any of the times I took it which I just got put back on it again. 250mg 3x a day = 750mg total. On pennicillin V 4000mg total sending them into cyst then bangin them with Metronidazole!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Yes Tree,
Thanks. I even switched my mouthwash to a non acohol form.
I too am on the generic. Just figured everyone knows "flagyl".
I'm hoping when I see the LLMD Jan 2nd he adds another med.
KILL KILL KILL THE KEETS
Sing to jingle bells,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Hi, Heather! Hope all is going well with flagyl. Seems to be kicking your butt. I forgot who your LLMD is... send me a priv msg if you don't mind. How long were you on "regular" ABX before trying flagyl? Never mentioned by my LLMD, but I want to be prepared if it comes up in the future.
Heard about the severe depression effect of these. What class of ABX do flagyl and tinidazole fall in?
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
PAIN! PAIN!
I'm so lethargic. And my ears are ringing!
eeeewwww. yuck.
These friggin' sunshines are getting on my nerves.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Yeah, where's the photo of that beauty you used to use? Flagyl sux. Butt. for reals. hang in there, you are killin them. but, um, are you getting your blood checked for liver stuff and other things?>??? Good idea to get it done bi-monthly. Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I'm allergic to Flagyl, it seems, so I hope I can tolerate the Tindamax. I start tomorrow (keeping fingers crossed).
I'll be your similar-drug buddy!
I'm a-scared about the major Herxing. I was told to start at one per day and go to SIX per day! It's four days on, three days off.
I'm also taking doxy and generic Plaquenil as far as treatment meds. (I'm taking plenty of "deals with side effects" meds and others.)
This oughta be interesting!
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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Imalive. I noticed some slight kidney discomfort and dark urine today even though I am drinking tons of H20. Will have to keep an eye on it. (Started Magnesium too.)
I am only up to 1/2 pill three times a day now. YUCK!
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Guess what? Today was not too bad. The pain is lifting.
Now I'm just stupid. Can't say names or words. allot of cognitive problems.
Today I'll take stupid over pain.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Soooooooooo
I think that was a two week herx. This morning is A.O.K.
Now I need to de-yeast-ify. I ate alot of comfort foods.
A warning to to others,"Flagyl is vicious."
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
How is everyone else doing?
IMA?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Hi Heather. I have to go back on Flagyl myself here very soon. When I was on it, I was only taking 250mg 2x's a day, one day a week. Hope you are continuing to improve on it?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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posted
Hi All, I'm starting Flagyl after the new year... I decided to hang on and get Christmas etc out of the way first.
I must say I'm not looking forward to it after reading all your experiences!
Hope you're feeling better Heather, it's encouraging that you seem to be getting over the bad patch- I hope that it continues to improve for you!
I've been taking the UK version of Ceftin for a few months and have felt consistantly better than I have in a long time. My doc has suggested pulsing Flagyl (400mg twice a day) with the Ceftin (375mg twice a day) - ceftin 5 days a week and flagyl for two. Anyone else on this kind of regime? Would it be enough to kill the cyst forms?
Posts: 229 | From United Kingdom | Registered: Jul 2005
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posted
I am doing pretty well today. I am taking 1/2 pill 3x/day now. I am waiting until after Christmas to go to a full dose so that I can try to enjoy the holidays. (wimp) I noticed I have to drink much more water on flagyl.
Merry Christmas!!!
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi flagyl buddies!
IMA? Has the pain left you yet? I still have little bits here and there. Ok.... not too bad but it's still pain.
My ears have not rung in a few days. No head aches.
Just tired but I still can get things accomplished.
Oh yea....... YEAST! BIG PROBLEMO! Flagyl definately is promoting the yeast. I have diflucan thankfully.
Happy New Year to all!
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Not very good come this tuesday night orange bowl is on and penn state is going to win and I cant drink beer dang flagyl.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
On my 5th day after not being on it for a couple months....major impatience and frustration with things.
Feeling just bummed out! Blach! I was on it last New Years in my third month of treatment...didn't plan too well this year so no champagne for me ;(
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
My doctor put me on a 5 day dose of 1500 mgs per day to get bB into my urine for a DNA analysis. After reading these posts I was pretty scared but didn't feel I could start gradually since it was a 5 day thing.
First 5 doses, I handled just fine. Mild headache was relieved with Advil. Then I took the 6th dose, became very fatigued. Rested and awoke with a sore throat. The pharmacy info listed this as a "very rare but serious side effect". Of course it happened on Friday at 5pm just before New Year's so couldn't reach the doctor. Did not take my evening dose. About an hour later, realized my sore throat was actually swelling along with my tongue. I ran to CVS for Benedryl which took care of the reaction.
No more Flagyl for me.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Anyone doing Flagyl with Rifampin? How's it treating you?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I'll be starting flagyl(metronidazole) 500 2x a day along with doryx.
posted
I may start this drug in the next few months.
I know Flagyl is for cyst-busting.
Does cyst form produce active symptoms?
Or do we take flagyl just to rid ourselves from them and prevent them from morphing in to active infection?
Posts: 116 | From Pennsylvania | Registered: Mar 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Forgot to mention: Flagyl tastes awful!
I dip em in yogurt or olive oil to get em down. Yuck! Posts: 2451 | From Lyme Central | Registered: Aug 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Surfbabe,
Sounds like a herx. I was tired and in pain for 2 wks.
LC,
If you have a die-off of bacteria or herx reaction you could posibly "feel it".
I'm not a doctor just giving my 2 cents.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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