Flagyl

[Guest guest]

Hi, Christie. Sorry I never got back to you re the ICQ. I have an ICQ

number but dont know how or what to do with it yet. Someone sent me

instructions but I of course lost them in the stacks of papers on my

desk! Re Flagyl Herxes. I have never been on Flagyl but I have had

herxes. Herxes present many ways. Sometimes mine present as stomach

cramps or pain in ribs or leg aches, or neck aches, etc. but mostly,

fatigue, dibilitating fatigue. The kind of fatigue where you have to

remind yourself to breathe. Sometimes mine are 3 weeks apart, sometimes

4 weeks apart, sometimes 6 weeks apart, depending onthe abx I am on at

the time. I have even had herxes for two weeks straight, off two days,

back again. So I must be pretty infected. Got to go. Got statewide mtg

tomorrow afternoon and I am not prepared yet for my presentations. Wish

me luck and pray for me. I read your post about getting treatment now.

I was so relieved. I sent lots of messages out for you. The reason I

have not been posting much anywhere is that my church decided I needed a

garage sale to try to cut down on the clutter in my small home. I had

floor to ceiling boxes from my home, my mothers & my mo-in-lw. Rough.

Today we sold things really good, hope tomorrow will be even better. then

FLDN meeting. I am so tired. Lovey

On Fri, 22 Oct 1999 23:43:56 -0400 " C.Tab. " <tab@...> writes:

> From: " C.Tab. " <tab@...>

>

> > Have you tried Flagyl?

> >

>

> Hi,

>

> I am taking Flagyl starting at 250 my 3xdaily for a week, then 500mg

> 3x

> daily for 4 months. Doc mentioned herx but did not say go off med.

> How do

> you know if you are baving a herx?? When I took flagyl for giardia,

> the

> diarrhea went away for a few days and then returned for a couple of

> days -

> would that be a herx? One doc said stay on it and one said go off -

> I went

> back on.

>

> This is my 2nd day and my IBS (or whatever it really is!) has

> completely

> disappeared and I have an appetite again! And I can go out without

> worrying about where the restroom is!

>

> It sounds like this won't last though. What do others do when they

> herx?

> It sounds like they run in cycles - and when do they usually start?

>

> I also take weekly shots of bicillin,as well as nystatin mouth

> swish and

> diflucan daily.

>

> In addition, LLdoc took me off of trazadone and put me on elival 2

> days ago

> as he thought would help with aches and not have hangover effect.

> BUt

> today, I can hardly hold my head up! The culprit is probably the

> elavil.

> But can flagyl cause this after 2 days?

>

> Well, I guess we supposed to feel worse before better!

>

> Thanks in advance for any feedback,

>

> CHristie

>

> ---------------------------

[Guest guest]

Lovey, something you said raises a question. You said, " The kind of fatigue

where you have to remind yourself to breathe. " How literal were you being?

Because I truly have found myself, when nearly comatose from fatigue,

suddenly noticing that I hadn't breathed in for a long time and taking a

sharp intake breath, afraid I was about to expire altogether. Am I nuts? Does

anyone else experience this? Also, does anyone else have the recurring dream

that your teeth are falling out?

(Michigan)

[Guest guest]

That is EXACTLY the dream ... teeth crumbling and spitting them out of my

mouth. And I don't grind my teeth. So what else would cause this very strange

dream to happen to more than one person? And I have it many many times.

(Michigan)

[Guest guest]

Ann,

I've had many dreams about my teeth

crumbling into little pieces in my

mouth. It's usually when I've been under

a lot of stress, and I've always

wondered if it coincided with me

grinding my teeth (I've been told by

various disgruntled boyfriends that I do

this once in a while). So far my fiance

hasn't mentioned it.

Jean

[Guest guest]

Yes, , that is exactly what I meant. I notice that especially if I

am under stress of any kind, I forget to breathe. For days after a

stress incident I am so physically exhausted I cannot hold my eyelids

open and feel " heavily drugged " Even though I didnt change meds. No one

else but a lymie could understand. My church friends decided I needed to

" clear " my home out (from incorporating my mother & mother-in-law's

belongings into my own) and organized a team to come EVERY day but Sunday

to sort & throw out to prepare for a garage sale. This took a month!

Oct 22-23 was the sale. Thank goodness it is over! I had to make so

many decisions so quickly until I think I probably sold my children too.

HA actually both are married and I have 5 grandchildren. So, I havent

been able to keep up with my email or lyme forums very well. While at

the Florida LD Network meeting Sat afternoon 1-5pm 150 emails came in.

I already had 80 unread as it was. I am seriously thinking of just

deleating without reading, BUT, I cant. There might be just ONE out there

who desperately needs my help, like Friday night. God just wont let me

off the hook. So I usually stay up til about 5 or 6 AM reading email.

However, 3 hrs sleep per day is not healthy so I am trying to do better.

RE: dreams. I have always been able to control my dreams so they are not

a problem. Rest well tonight. Lovey

On Sun, 24 Oct 1999 23:45:56 EDT lisa86@... writes:

> From: lisa86@...

>

> Lovey, something you said raises a question. You said, " The kind of

> fatigue

> where you have to remind yourself to breathe. " How literal were you

> being?

> Because I truly have found myself, when nearly comatose from

> fatigue,

> suddenly noticing that I hadn't breathed in for a long time and

> taking a

> sharp intake breath, afraid I was about to expire altogether. Am I

> nuts? Does

> anyone else experience this? Also, does anyone else have the

> recurring dream

> that your teeth are falling out?

>

> (Michigan)

>

> ---------------------------

[Guest guest]

,

I had that dream of my teeth falling out on and off all my life. I once read

that it either means, that you feel like you are losing control over your

life, or simply that you are not taking care of yourself, and ill. Both of

these meanings would fit with us being sick with Lyme, In the beginning of

my Lyme, I did have the breathing problems, but I'm also anemic, which can

also cause that. I know how scary that is. Hang in there and if its get too

scary, call your doctor. But I sure Lovey will also provide you with more

information, she has been through so much, and therefore knows so much more

than I do. Good luck

Vicki

Re: [ ] Flagyl

>From: lisa86@...

>

>Lovey, something you said raises a question. You said, " The kind of fatigue

>where you have to remind yourself to breathe. " How literal were you being?

>Because I truly have found myself, when nearly comatose from fatigue,

>suddenly noticing that I hadn't breathed in for a long time and taking a

>sharp intake breath, afraid I was about to expire altogether. Am I nuts?

Does

>anyone else experience this? Also, does anyone else have the recurring

dream

>that your teeth are falling out?

>

> (Michigan)

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

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>

[Guest guest]

,

Sorry to say that I have experienced both!

What a sorry lot we are!

Take care, Joan

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: lisa86@...

Lovey, something you said raises a question. You said, " The kind of fatigue

where you have to remind yourself to breathe. " How literal were you being?

Because I truly have found myself, when nearly comatose from fatigue,

suddenly noticing that I hadn't breathed in for a long time and taking a

sharp intake breath, afraid I was about to expire altogether. Am I nuts? Does

anyone else experience this? Also, does anyone else have the recurring dream

that your teeth are falling out?

(Michigan)

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

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To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

Losing control of my life? Absolutely. Not taking care of myself? Absolutely,

but not because I don't want to. BECAUSE I CAN'T GET DIAGNOSED!!!!!!

Interesting interpretation of that dream. It helps to know I'm not the only

one who has it.

[Guest guest]

HI Christie

I don't even know if I am answering your question (mind too foggy) but I

believe you must take flagyy with another abx to prevent resistance. I seem

to recall that zithromax is one that can be used the other may be

tetracycline.

good luck

best,

lea

<<

HI Guys,

Hope ur all having a good day. I had to come and write abt Flagyl and my

experience with it.

As I wrote a few days ago. I came down with H pylori from to much Abx.

Hi,

I'm behind in my mail so didn't see previous post. Is there a way to

prevent this infection since we are all on long term antibotics?

<<My doc prescribed, prevacid 2x day, 500 Biaxin 2x a day and 250 Flagyl

250 3x

a day . I have been on the flagyl for a week now, and feel good. I have read

so many letters saying that flagyl gives really bad herxes.

I had same question and I'm on same dose until tomorrow. I haven't had a

herx and my gut and lung problems are so much better! But this is the

smallest dose. I will be taking 1500mg per day and then I expect herx as I

had when treated with giardia infection.

Also have a question: - does anyone take the antibotics with an on and off

schedule as

3 weeks on and 1 week off or any such variant?

Thanks,

Christie >>

[Guest guest]

-

I have had the neck,joint and back pain since I

started on the Flagyl too. Its not as bad as it was

but I still cant do much before it acts up again. And

I wear out really fast. So the fatigue is a big issue

too. Must be the dose because thats the same dose Im

on and it is having the same effects. Im on

Amoxicillin and Probenecid along with it.

L(MI)

--- BailieBoy@... wrote:

> Could someone forward me the flagyl protocol or put

> it on the list?? I

> started by taking 500 mg twice a day. No problems

> whatsoever. Yesterday I

> moved it up to 500 mg three times a day plus I'm

> taking levaquin. I still am

> not sure what a herx is. I did start having some

> symptoms again of eyes

> twitching and neck pain. Mostly I just feel

> exhausted all of the time and

> have widespread joint pain especially in my feet and

> back. Maybe I shouldn't

> even be taking antibiotics anymore. I'm so

> confused.

>

>

>

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>

[Guest guest]

In a message dated 11/15/99 2:56:11 PM Eastern Standard Time,

mellillo1@... writes:

<< So I am asking those of you on it or that have been on it to let us

know if it specifically made a cognitive difference and any studies you may

have read that supported this >>

Shar, I only have been on it since Nov. 1, but one striking thing happened to

me during that time. I needed to call an " acquaintance " , a number I have

dialed over the last few lyme years rarely...well odd thing was...I did it

from memory...considering

how bad my short term meory gets fried, I considered it a mini-miracle...

I was also able to fire off to my mayor and town council a detailed letter

that was actually quite literate and detailed...and then a scathing rebuttal..

I also needed to write a letter to a lawyer and " spar verbally " thru the

typewitten word, and in both cases, I have had the success I was used to

before the Lyme neuro was so bad....I am on Flagyl alone, and def feel it has

made improvements for me cognitively...Bernadette

[Guest guest]

Sharon,

I hope I'm not being redundant in posting about my 2 1/2 weeks experience w/

Flagyl BUT the improvements I have made in this short time have been nothing

short of miraculous in terms of my mental clarity and overall physical

energy. It feels like taking Motrin for menstrual cramps - within 4 days of

taking full dose my head JUST CLEARED UP!! I've been getting better by

leaps and bounds every day.

I don't mean to be evangelical about it because the side effects are

significant and the future is unknown but I never would have expected to

feel this much better so quickly. I also don't know how much the 10 weeks of

IV Rocephin contributed, although I was getting more and more foggy and

fatigued on that which is why I started the Flagyl in the first place. There

could be some kind of synergistic effect between the two, but based on my

bodily intuition I think it's just the Flagyl.

I can't imagine why your LLMD would be so opposed to a trial when the

situation is so difficult w/ Mike, even considering the risks. I assume you

saw my post about Atkinson Barr's posts and how to retrieve them. I

have his email address if you think it would help to hear from him directly.

He's not a clinician, only a research scientist. He's in the process of

constructing a website with all info he has.

Please let me know if I can be of any help.

My best wishes to you and Mike,

beth

[Guest guest]

Sharon

This sounded so up beat, I'm so so happy for you. Sounds like you are making

positive progress at last. Tell Mike we are all pulling for him too (as well

as your other children)!

Vicki

>From: " melillo " <mellillo1@...>

>

>Well, just returned home from my visit with our psychopharmocologist. He

is

>very Lyme literate and no nonsense. We spoke about my mental state and my

>son's mental state and he is very sure we should go on flagyl/zithromax

>combo.

[Guest guest]

Hi Sharon,

I wish you the best in convincing your LLMD that Flagyl should be tried,

I am having a tough time convincing my doctor too....he says " Too many side

effects! " I need to have a good brain day so I can compile the evidence

that others are doing well on it. Hey I got plenty of problems taking

" Nothing " what are a few side effect?

I wish you and Mike the best.

Hugs,

Marta NJ

>From: " melillo " <mellillo1@...>

>

>Well, just returned home from my visit with our psychopharmocologist. He

is

>very Lyme literate and no nonsense. We spoke about my mental state and my

>son's mental state and he is very sure we should go on flagyl/zithromax

>combo. My LLMD has been equally as adamant about us not going on it and he

>can't understand why. So on Wed. we have an app't with her and I will try

>to push her to do it. He feels it is the only chance Mike has of regaining

>his cognitive ability. He is struggling with college and we really should

>not have allowed him to go back. But at the time, in September, he had

>finished 2 courses at community college with As and he seemed ready. I

just

>didn't realize how hard it would be to live on his own, cook, clean and do

>college (3 courses), at a very difficult college. Now we are rethinking

>this and hope maybe a course or two of flagyl will help.

>The psychopharmocologist has seen alot of cases make great strides with

>flagyl. So I am asking those of you on it or that have been on it to let

us

>know if it specifically made a cognitive difference and any studies you may

>have read that supported this. I want to be ready for Wed.'s visit with

the

>LLMD.

>Thanks,

>Sharon - Hunterdon County, NJ

>

[Guest guest]

beth,

I'm very happy to hear how well you're doing on the Flagyl! I'm going to

ask my LLMD about it at my next app't. How bad are the side effects?

Take care,

Joan NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Cont'd Sx, Neg. s & No LD Dx: '90-'99 1st WB: 4+ Specific Bands:

4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

I sent out the exact message a several weeks ago, got lots of " it works

great, gave me back my life " and equal amounts of " its horrible, too toxic,

etc. " & Kate have good results with it. But we haven't heard from

& Kate for a while. I saved his old email that has a lot of info on

Flagyl, but need to get his permission to post it again, but he said I could

once, so if I don't hear from him I'll post it again if you want it. ANYONE

HEAR FROM GEORGE & KATE???? Vicki, Md

>From: BearyPrety@...

>

>In a message dated 12/16/99 11:36:48 PM EDT, KB46@... writes:

>

><< Please let me know via the list how the Flagyl works out for you. I am

> considering asking my doc to prescribe Flagyl, and I'd like more of an

>inside

> story from someone who has been there and done that. >>

>

[Guest guest]

In a message dated 12/17/99 2:38:43 AM, lyme-aidonelist writes:

<<Flagyl is used in Lyme to change your ph balance. I believe to become more

alkaline and causes the abx to be better absorbed.>>

Hi Lea

I think that you confused Flagyl and Plaquenil. After a while they all start

sounding the

same (<: Flagyl is an antibiotic. See the below information.

Metronidazole is the generic name for Flagyl:

Categories: Abscess, Abdominal; Abscess, Hepatic; Abscess, Lung;

Abscess, Pulmonary; Amebiasis; Endocarditis; Endometritis; Helicobacter

Pylori; Infection, Bone; Infection, Gynecologic; Infection,

Intra-abdominal; Infection, Joint; Infection, Local; Infection, Respirat

ory Tract; Infection, Skin; Meningitis; Peritonitis; Pneumonia;

Prophylaxis, Perioperative; Septicemia; Sexually Transmitted Diseases;

Trichomoniasis; Vaginosis, Bacterial; Pregnancy Category B; FDA Approved

1980 Feb; WHO Formulary; Orphan Drugs

FDA Drug Class: Antibacterials, Miscellaneous; Antidiarrheals;

Antiprotozoals; Dermatologics; Disorders, Acid/Peptic; Gastrointestinal,

Miscellaneous; Tetracyclines

Brand Names: Acromona; Amibazol; Amiyodazol; Anaerobex; Anerobia;

Apo-Metronidazole; Arcazol; Arilin; Ariline; Asiazole; Asuzol; Camezol;

Clont; Debetrol; Deflamon; Elyzol; Fladex; Flagenase; Flagyl; Flagyl

375; Flasinyl; Fossyol; Frotin; Fulikan; Fuzuzin; Klion; Medai; Melis;

Metarsal; Metizol; Metro IV; Metrocream; Metrogel; Metrogyl; Metrolag;

Metrolex; Metromidol; Metronidazole IV; Metronidazol McKesson; Metroxyn;

Metroxyn 500; Metrozin; Metrozine; Metrozole; Metryl; Nalox; Nida;

Nitrozol; Noritate; Norstene; Novazole; Novonidazole; Protostat; Rozagel

; Rozex; Rozex Gel; Satric; Servizol; Servizole; Supplin; Takimetol;

Trichex; Trichozole; Tricowas B; Tricowas-B; Trikacide; Trofonil;

Vaginyl; Vagitrix; Vagyl; Zadstat

(Foreign brand names outside U.S. in italics)

[Guest guest]

You are so right; lyme-brain---I actually meant to say plaquenil is used in

Lyme to change the ph.

thank you so much for noticing that and for the correction.

lea

<< <<Flagyl is used in Lyme to change your ph balance. I believe to become

more

alkaline and causes the abx to be better absorbed.>>

Hi Lea

I think that you confused Flagyl and Plaquenil. After a while they all

start

sounding the

same (<: Flagyl is an antibiotic. See the below information.

Metronidazole is the generic name for Flagyl: >>

[Guest guest]

Hi Bernadette,

Since my IV abx was denied by Oxford, I'm thinking of asking my LLMD for

Flagyl. What do you think?

I have been on Doxycycline, Biaxin and Ceftin, but now I am off abx.

Should I do LUAT, Lyme titer and WB beforehand?

Hope you, your hubby ad kids are doing well.

Thanks,

Joan

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Cont'd Sx, Neg. s & No LD Dx: '90-'99 1st WB: 4+ Specific Bands:

4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

Hey everyone,

I emailed and Kate to see how they were doing. Actually they have had

some set backs. Kate messed up her doses with Flagyl (remember their

doctor's regime, slow approach and gradually increase?). Anyway it really

set her back. asked me to let everyone to know, if you take Flagyl

and start to herx, stop taking it until the herx stops, then start back. I

have the old dose information always used to urge everyone to try. He

really believes in this regime and has seen first hand with Kate. But so

many people I know are on Flagyl and don't have this problem. This disease

and treatment is so weird. Vicki, Md

[Guest guest]

Hi Vicki,

Thanks for the update on and Kate, I feel bad for Kate, I was

hoping she was well. I do miss them on the list, so please mention that

next time you write.

Hugs,

Marta

>From: " Vicki Ferraro " <ferraroa@...>

>

>Hey everyone,

>I emailed and Kate to see how they were doing. Actually they have

had

>some set backs. Kate messed up her doses with Flagyl (remember their

>doctor's regime, slow approach and gradually increase?). Anyway it really

>set her back. asked me to let everyone to know, if you take Flagyl

>and start to herx, stop taking it until the herx stops, then start back. I

>have the old dose information always used to urge everyone to try.

He

>really believes in this regime and has seen first hand with Kate. But so

>many people I know are on Flagyl and don't have this problem. This disease

>and treatment is so weird. Vicki, Md

[Guest guest]

Hi all,

My son is on Zith and Rifampin. The doc was going to add Tindamax, but my 

insurance wouldn't cover it, so he is adding Flagyl instead. Does anyone have

any experience with this med?

thanks

Judy