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Posted by Mo (Member # 2863) on :
 
Hey,

All of you who posted above on Flagyl helping, could you please list the dosage, whether you ramped up, lenghth of time on it,

and whether you pulsed or not?

(and a brief account of your state of illness and other abx prior and during would be helpful, too)

I'm on Rocephin ten months, still with co-infections to address, and then I would like to intruduce Flagyl.

("Mr.Flagyl..this is Mr. Cyst"..

"Well, hello there Mr. Cyst..a pleasure...")

I was on low dose Zithro...very low..so I'm certain cysts are around.

Also..on Green Pea's thread, posted below..
http://flash.lymenet.org/ubb/Forum1/HTML/020407.html

Strenghth to Strenghth said that the longer cysts are around, the less likely they are able to produce motile spirochetes. (soory if I misquoted?) But...

Can you elaborate?

Maybe we can get some insight..this drug is used in varying ways, and I'm sure the efficacy has to do with the particular presence and number of cysts you are with when you start..

The Chicon Protocol has been mentioned here..basically on IV, your four days on , two days on Flagyl, one day off.

Then other Docs simply integrate staraight courses of Flagyl.

Oy..

Mo

[This message has been edited by Mo (edited 24 October 2003).]
 

Posted by rosesisland2000 (Member # 2001) on :
 
I have had many, many years of this disease, probably looking back now, I see that I may have had it for at leaast 15...good possibility that it has been more.

I only got a diagnosis in Jan 2002...did not see and llmd at that time and went through 4.5 months of IV Rocephin, then Doxy, then Biaxin/Plaquenil, then Zithromax, I believe it was...

after 9 months straight of the above abx, I starting seeing an llmd, Dr. C of MO.

He started me off on Flagyl...the following dose schedule:My LLMD starts out his Flagyl patients with 1/4 of a 250mg pill once a day.

Then day 2 1/4 pill twice a day...

3rd day 1/4 pill 3 times a day...

4th day 1/4 pill with breakfast and lunch,
1/2 pill with supper

5th day 1/2 pill with breakfast and supper,
1/4 pill with lunch

6th day 1/2 pill 3 times a day

7th 1/2 pill with breakfast and lunch,
1 pill with supper

8th day 1 pill with breakfast and supper,
1/2 pill with lunch

On day 9 goes to 1 pill 3 times a day.

Days 10-15 1 pil 3 times a day.

Days 57-63 500mg twice a day with breakfast and supper

Days 64-71 500 mg twice a day as above and add 250 mg with lunch

Days 72-120 500 mg 3 times a day with food.

I started off just fine and was able to ramp up to a dose of arount 1000 mg per day and started herxing...

(at that time, according to my LLMD, I should've backed off for a day or two)

I did not!!!

By the time I got to 1200 mg per day I was in such a severe herx and I mean a severe one...I had to stop the Flagyl...I lost more ground and had to be off Flagyl for a whole month.

By the time I was able to return to Flagyl, I was never able to get a dose higher than about 100 mg, or I went into the herx from hell.

I continued on Flagyl until April...so that was 7 months of Flagyl for me.

At that point I was put on Rifampin and Clindamycin/Quinine 10 day rotation.

Flagyl, for me, probably would've worked well had I followed my LLMD's instructions.

I hope this helps.

Rosemary
 

Posted by Mary J (Member # 4234) on :
 
Hello everyone,

I have been on 1000 mg flagyl/day for over
3 mos now. First 3 mos taken with 1000 mg
biaxin and now taking with 1000 mg ceftin.
Did not ramp up; went straight to high dose
and stay there. Have nothing to compare it
to so can only say feel crappy all the time.
Lots of pain; very fatigued; weak;; dizzy;
you name it. Dr says hang in (he's the LD
expert of Canada) and I'll show improvement.
Might be up to one year!

 

Posted by danq (Member # 2126) on :
 
Mo, I did Flagyl in combination with the IV Rocephin.

Flagyl for a month, then a different abx for a month (biaxin?), then Flagyl again... all while doing the Rocephin.

Yes, I ramped up to my full dose of 1500mg/day.
Started out real slow, but went up to the full dose within about 3 days. No, it was not particularly fun! But I'm a Nacho kinda guy, ya know?

I had presumably a pretty good cyst load when I started, having had Lyme for about 7 years with a few failed (insufficient) treatments.

Right now I'm doing pretty well - it's been almost a year since I finished the IV, but I'm still on orals - and I'm cautiously optimistic about not relapsing.

I do hope you'll get better soon!


Dan
 

Posted by Melanie Reber (Member # 3707) on :
 
Maureen,

Just dropping in to say hello...I am so glad to see you adressing your own healthcare these days. Does this mean that Ryan has somewhat stabalized???

Hey Dan,
You said: "No, it was not particularly fun! But I'm a Nacho kinda guy, ya know?"

You must be a hit at parties!

Melanie

------------------
*COLORADO SUPPORT SYSTEM*
[email protected]
 

Posted by Mo (Member # 2863) on :
 
Hi Mel..how's your octopus?

Miraculously..
yes, my son is quite stable. For over a month now, after two months of severe psych/cognitive illness, then eleven weeks of intensely severe daily nuero-psych Herxing..

It just stopped..then added Rifampin, and welcome back Ryan..he will stay on IV a long while. Still has lots of stuff going on.

He is , best of all..just plain old happy again. Miraculous..

You guys were really there for me. Many thanks!

Dan...were you an the Flagyl from the get go with IV? Sounds like that is what you're saying. I imagine you are a hit at parties, Nacho head..

I was really just coasting these past few months, running on sheer adrenaline and trying to treat Babesia...so onward from here.

Wild Condor and Strength to Strength, you around?..care to share specifics?

Thanks for the detailed dosing scheduale, Rosis..

Mo

[This message has been edited by Mo (edited 24 October 2003).]
 

Posted by Melanie Reber (Member # 3707) on :
 
Hey Dearest,

That is such glorious news about Ryan!!!!!
Welcome back-indeed!
How about little Emily?

Mr. Octopus is doing pretty well, except for the op site that just won't heal up completely.

My doc just handed over two more months of Rocephin at no charge, so it looks as though I'll be on this for awhile. Thank goodness, huh?
Gotta keep feeding thoses tentacles!

Much love and admiration, M

------------------
*COLORADO SUPPORT SYSTEM*
[email protected]
 

Posted by pab (Member # 904) on :
 
Mo,

Great news about Ryan!!

Have you considered Flagyl ER? Jake & Jordan were on Flagyl ER for a few months.

Jordan didn't herx anymore than with other meds and he did improve while on it.

------------------

 

Posted by Mo (Member # 2863) on :
 
Up for Flagylites..

Mo
 

Posted by flyers999 (Member # 1397) on :
 
I've taken on Flagyl at 750 mg per day, always pulsing. At first I did three-week stints every three months. Now I'm doing 1 week stints every so often. I have it sitting in the med cabinet now and am overdue for a 1-week round. I hate taking it, it always knocks me on my butt.

I've always taken it with antibiotics. Why some docs would prescribe this drug without accompanying abx , is beyond me. Flagyl kills the cysts but has no effect on the keet. Taking Flagyl by itself just breaks up the cysts and turns them into keets where they can roam unhindered.

Mary J: That's a awful long time to take Flagyl without a break. Almost all llmds down her pulse Flagyl from 1 - 4 weeks. Rosemary's experience with the drug is a good example of what happens when you don't back off when the symptoms get too intense.

Jack
 

Posted by john in ga (Member # 4603) on :
 
hey Mo,I'm also taking flagyl under same protocal as Rosemary,(under DrC).Also taking doxy.

I seemed to herx first day but not too bad.
Almost a month now herxing real bad so I

stopped meds today.Supposed to add zithromax
soon,hoping that will clear the brain some,

cant work like this.I have been sick 2 years
but had bulleyes as much as 4 or 5 years ago

and did not know what they were.Had lots of possible sinus,neck and head things those

years but had one particular bite that must have sunk the boat.On road to getting well

now though.John
 

Posted by Lishs mom (Member # 2344) on :
 
Mo-
One of the doctors I have been working with is speaking on Flagyl and its use at the LDA conference.
From what I understand he is suggesting that we must keep 4 mcg of concentration in tissue, which is acheived in the avg person by 750mg TID. (2250 Mg/day)
The half life is 6 hours, so you must maintain doses high enough to stay above the 4 mcg round the clock to achieve good effect.
There will be a published guideline on it after the conference.
 
Posted by Judith16 (Member # 4424) on :
 
Hi all,

I was placed on Flagyl a week ago and Wednesday I stopped the drug. By Tuesday some of the worse neruo symptoms I had not had for several months ago came back with a vengence.

I have been on Ceftin 1500mg/day and Bioxin 1000mg a day since July 2002. I was pulled off the Biaxin a month ago and Ceftin increased to 2000mg/day. I switched LLMDs in September because my old LLMD retired.

The docs feel I first got infected with Lyme in 1975. Did not see a tick on me tho several were all over my apartment that our dog brought in. I woke up one morning with a huge strange rash on my breast that noone could tell me what it was...all you could see in the center was 2 bite marks. Our dog got sick and at 18 months of age died without us ever really finding out what was wrong with her.

Dont ask me what happen all these years. I have had some medical problems bit nothing too horrendous until summer of 2001 when my vision got really funny and then it was downhill from there.

Since July 2002 when I started abx I would say I am 65% better.

Judith

PS. I am waiting to hear from LLMD to see what he wants me to do with Flagyl.
 

Posted by Nancy-OH (Member # 3567) on :
 
I did Flagyl for 5 months. 250 mg. 3xday.

I did it with Cedax. No pulsing.

It helped more than any other abx, but I herx'd from the very first pill.

As I recall, I started with one per day and over the course of a week or week-and-a-half I worked up to the 3xday dosage.

At times I thought I would die. I have never herx'd so badly before.

I probably had Lyme for a year before the diagnosis. Previously did Doxy, Amox, Levaquin, (couldn't take Dynabac)and I might even be forgetting one other.

I herx'd on every abx I took, but the Flagyl brought me along the farthest!

Wishing you good health!
Nancy



 

Posted by StrengthToStrength (Member # 3721) on :
 
quote:
Originally posted by Mo:
Strenghth to Strenghth said that the longer cysts are around, the less likely they are able to produce motile spirochetes. (soory if I misquoted?) But...

Can you elaborate?

There was a study done where they forced the spirochetes to form into cysts via dousing them with an antibiotic (Rocephin?). The longer the cysts stayed in cyst form, the longer they took to turn back into mobile spirochetes. Also, the longer the cysts stayed in cyst form, the fewer % of cycts produced motile spirochetes. This study was done in vitro.

I'd do a search for the study, but I don't have a ton of time (company, and a roommate is moving in).

As I've said before, please read about Dr. Atkinson-Barr's work with Flagyl, it's very interesting:
http://groups.google.com/groups?q=atkinson+barr+flagyl

As for my own course of treatment inclusing Flagyl:
6 months from tick bite to treatment
have Lyme, possible babesia
3 months doxy 400mg + Biaxin 1000mg
5 months Biaxin 1000mg + Plaquenil 200mg
1 week artemisinin 900mg
2 months Biaxin 1000mg + Plaquenil 200mg + pulsed Flagyl 1500mg (one single dose per day, two weeks on, two weeks off)

soon: Flagyl solo for 2 months, then tinidazole solo, or tetracycline + plaquenil... until my symptoms are gone for 2 months. No more pulsing since I'll be on only one antibiotic.

The Flagyl helped a ton with my neuro symptoms. There were some pretty major side effects, but I agree with Dr. Atkinson-Barr - the side effects are not so much from the drug as they are from bacteria being killed.

I've gone from being in rough shape and wanting to die to feeling mostly normal. I still get slight meningitis symptoms, and my joints feel a bit misaligned but do not hurt. Went from sleeping 3-4 hours a night to 10+ - some of the best sleep I've ever had. I get seriously wiped out at night - Feels like my body is telling me to chill out and let it repair itself.

I tried going full dose of Flagyl right off the bat, and felt totally psycho for two days. Took a break, then ramped up. Felt like total crap for about 3 weeks, then noticed huge, very accelerated improvements.

Gotta go, company will be here in a few.

Take care.
 

Posted by WildCondor on :
 
I was on IV Zithromax and IM Bicillin when I began Flagyl/Metronidazole 500 mg three times per day. It was increased after a month to 750 mg three times per day.

I herxed HARD! Every Lyme symptom flared up and more that were hidden came out. I was sooo exhausted, the depression came on full force feelings of dread and impending doom and suicidal thoughts. I had major bone pain and swelling, all the herx symptoms but it was constant and lasted months and for months after I stopped the Flagyl. I then used it pulsed one week on one week off and the weeks off I took Biaxin 2000 mg per day ( and I was then off the Zithromax IV) and on the pulsed Biaxin/Flagyl plus three times a week Bicillin LA 1.2 My shots and 10-15 Hyperbaric Oxygen therapy sessions per 4-6 weeks while on Flagyl. This was THE BEST treatment combination for me. That and before the Flagyl i did IV Zithromax and Mepron for babesia with Bicillin, and did great on that too even with the herxing that made me feel like death gor a year and a half.

Do the Flagyl, and I dont like the starting slowly idea. Blast the heck out of the cysts and them annihilate the intact spirochetes that swim out of the cysts with a combination of a macrolide (Biaxin or Zithromax high doses) plus Bicillin or HIGH dose Amoxicillin and herx your butt off and you will feel so much better once you finsish herxing.

We will beat this!

------------------
Lyme Disease Help
http://www.wildcondor.com
 

Posted by Mo (Member # 2863) on :
 
This is some Flagyl thread.

Thanks for coming on and putting this down in one place.

Look at all the ways it's used and the verying response!

Some of the accounts just sound like pure Herx's from hell..though I know it can cause periferal neuropathy as a side effect.

Wild Condor..thanks for your account.

What do you think of the use of LFlagyl while staying on Rocephin? Same idea as when on high dose Amoxil?

The Cichon protocol is still intriguing, but I'm sure one must Herx avery couple of days from wither cyst release, or die off.. and then the idea of setting the bugs free for any length of time risking damage or more opportunity for them to migrate....makes you wonder if pulsing longer, steady courses with a macrolide and something like Amox or Rocephin is the way to go after long term IV.

I would venture to think it would be a different approach if you were going to it from orals..and then different still if it was incorperated early in treatment..

Mo
 

Posted by Mo (Member # 2863) on :
 
Up for more
 
Posted by Art4Me (Member # 1508) on :
 
Let's see, bit 98, diagnosed 02. Started with Biaxin at 1000 mg in march. Got bit again in May, put on avelox with the Biaxin. Developed tinitus, a side effect, switched to Flagyl in July 02. Meanwhile Biaxin was upped to 2000 mg / day in June. Nasty 3 wk herx. Started flagyl at 750 mg/ day right away, 2 doses per day. In may of this year 03 upped it to 1000 mg per day, in 2 doses. Have taken flagyl non stop since july 02 along with Biaxin. I do not remember herxing bad on the flagyl, just some more aches, pains and fatigue. By Aug 02 due to Biaxin and Flagyl didn't have as many seizures, so quite happy with Biaxin Flagyl combo. Feel ready for more of something with these, but don't know what to talk to lldr about. Feel have plateaued and would like to progress more. Any suggestions? Best wishes to you and flagyl.
 
Posted by badkitti30043 (Member # 2889) on :
 
Hey Mo

My experiences with Flagyl have been in combo with :IV Rocephin /and IV Clindamycin all month/oral Zithro all month w/ Flagyl added in for 1 week of the month

Next was: Rocephin all mo. w/
1/2 mo. Cipro /doxy combo and the other 1/2 mo. IV Clindamycin .. and one week Flagyl added in.

Next it was still : IV Rocephin(my constant) and IV Zithro -all month and 2 weeks Cipro / the other 2 weeks Zithro w/Mepron and then 1 week Flagyl again tossed in anywhere during the month..

You get the picture.. All doses of Flagyl were at 500 mg.-2x day= 1000 mg. total.

I asked if I could stay on it longer as the first time I thought it may have been helping in clearing the bugs in my head up.. The LLMD said its only needed for one week at a time and the most he would want me to be on this is 10 days at any given time.. I am not sure I agree but thats what he said.

My Protocol is changing next week and will then be IV Zithromax
IV Levaquin
I week of flagyl
and I will most likely continue Mepron also unless it conflicts. Msy be others added to this or not.. don't know yet about the rest.

If you noticed the Rocephin is no longer going to be my main med. This sucks an I am not a happy camper about being taken off of it.I am pretty sure the Levaquin is for Bartonella maybe?Maybe for Lyme too .. I hope.

Flagyl did surely stir up the bugs in my head each time I have been on it. I have not had any really horrific reactions though.. at least no worse than the other herxs.I am one of the folks here that tend to herx on almost all Abx... It all feels like several very long never ending herxes over the course of the past year of treatment but I have treated very agressively so I imagine its to be expected.

I do not know of any reason you would not be able to continue Rocephin while taking Flagyl..

Good luck with your new med MO, I hope you can take care of you for a while ok.. hopefully all will stay stable w/ the kids so you can concentrate on getting better too.
Sandi


 

Posted by C-Rae (Member # 4778) on :
 
Hi. I've been on flagyl for one year, and it's one of the two "big guns" (the other being Omnicef) I can't do without. I take 750 mg/day extended release.

quote:
Originally posted by Mo:
Hey,

All of you who posted above on Flagyl helping, could you please list the dosage, whether you ramped up, lenghth of time on it,

and whether you pulsed or not?

(and a brief account of your state of illness and other abx prior and during would be helpful, too)

I'm on Rocephin ten months, still with co-infections to address, and then I would like to intruduce Flagyl.

("Mr.Flagyl..this is Mr. Cyst"..

"Well, hello there Mr. Cyst..a pleasure...")

I was on low dose Zithro...very low..so I'm certain cysts are around.

Also..on Green Pea's thread, posted below..
http://flash.lymenet.org/ubb/Forum1/HTML/020407.html

Strenghth to Strenghth said that the longer cysts are around, the less likely they are able to produce motile spirochetes. (soory if I misquoted?) But...

Can you elaborate?

Maybe we can get some insight..this drug is used in varying ways, and I'm sure the efficacy has to do with the particular presence and number of cysts you are with when you start..

The Chicon Protocol has been mentioned here..basically on IV, your four days on , two days on Flagyl, one day off.

Then other Docs simply integrate staraight courses of Flagyl.

Oy..

Mo

[This message has been edited by Mo (edited 24 October 2003).]


 

Posted by Mary J (Member # 4234) on :
 
Hi everyone,
Jack, thanks you input re too long with Flagyl. I'm seeing my LLMD on Sat; will mention to him if I remember. Know what I mean: can't remember much unless it's written down..

 
Posted by opiegirl (Member # 4594) on :
 
I take 500 mg 3x a day. I am new to allof this not sure what pulsing means. I have cronic lyme, was misdiagnosed with MS 12 years. Just started abx six weeks ago. Mino first for a month(400mg 2x a day) then swiiched to Flagyl. Tolerating it well. Have not herxed. Not sure if thats good or bad. Go back to see LLMD on the 14th of Nov. Will Know more then.
Thanks for all your info.
Opiegirl
 
Posted by chrisb123 (Member # 3489) on :
 
Diagnosed October 2002 after about 9 months of trying to figure out what was wrong with me, but we really have no idea how long that I have had it.

Started taking Flagyl in combination with 100 mg. Biaxin and Plaquenil in March 2003.

Take it one week a month at 500 mg twice a day to = 1,000.

The first time I did this I could not function - I slept off and on for about 48 hours in between lots of muscle spasms, brain fog, bad dreams, depression, etc. My mother came and took care of my kids. Literally herxed like that for two full days! But felt great a week later!

Have been doing this one week a month since then and each time experience the strongest herxes of any other combination we have tried. It has during the course of my treatment brought new symptoms to the surface which my LLMD believes is a good thing. And usually the week after I take it I feel the best in my little lyme life cycle.

I do highly recommend it. I did not ramp up as some of the others suggested. I believe, at least for me, that it has been the most effective treatment.

------------------
chris
 

Posted by AtlantaLymie (Member # 4494) on :
 
Hi, Mo.

I have probably had Lyme since 1964, not diagnosed until 8/02, stayed on various ABX most of my life.

I have taken Flagyl off and on - last year for several months at 500 mg./day. Last few months, I've been on a new protocol - taking it one wk/month at 1500 mg day. That week, I am a miserable slug. All month long, I take 1800 mg. Clindamycin and 500 mg. Zithromax, all oral.

Without the Flagyl, I still feel icky twice a day for a few hours after meds, but am seeing a significant improvement. YEAH!
 

Posted by Mo (Member # 2863) on :
 
Bringing it up..

This is really helpful, I think, for all the comparisons in dose, usage, response.

Mo
 

Posted by flossie (Member # 3384) on :
 
up for gus
 
Posted by Mo (Member # 2863) on :
 
Anyone use the Chichon protocol?

Rocephin 2gran 2x a day for four days, Flagyl for two days, then one day off?

Plan of action: open up any cysts, then do some (s)keet shooting. (I like that analogy because I actually am a pretty good shot, with the real thing... )

Sounds Herxacious, but intriguing..

Or a similar protocol with high dose orals?

Mo

[This message has been edited by Mo (edited 03 November 2003).]
 

Posted by lymeHerx001 (Member # 6215) on :
 
anyone get itchy on flagyl? would this go away?

Im supressing it with anit-histamines
 

Posted by on :
 

 


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