trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Hi all you cyst bustering peoples!
Just wanted to pop my head in here coz I am on a cyst busting combo too, but it is a bit old school: It is the Plaquenil, amoxy, probenecid thing.
The plaq makes the body alkeline or something and that makes the cysts more vulnerable to busting up by the amxoy or something? I dont get it and I didnt believe it until I started having the most intense herx of crazy pain pain pain all over my body.
ANyhow--I am experiencing MUCH the same things as you guys, so I might just have to barge in here every once in a while.
COLD SORES---here's something wierd: I was getting them the same time you all got them too! ISnt that BIZARRO? Mid January. Wierd.
Take care everyone and enjoy your lemon waters with the super bowl! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Well, got to read this last screen for now.
Started flagyl Wed. pulsing every other day. Next day had a COLD SORE like a paper cut.
WHAT IS AIR HUNGer? ==================== last week when trying to sleep, I've had these nightly occurrence. Inhaling or exhaling and then I FREEZE UP and can't breath at all! Does this happen to you? Thanks.
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HEATHERKISS
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Member # 6789
posted
Only lasted a day for me. It felt painfull to breathe. My chest was tight.
I felt like I couldn't get air even though I knew I was.
Hope it passes quick.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Boomerang
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posted
Heather, my hubby only complained about it one day also.....hasn't said anything else about it.
Posts: 1366 | From Southeast | Registered: Sep 2005
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hopeful123
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Member # 3244
posted
still on flagyl and the herxing is less intense. brain not really working today, so maybe that's a herx, but has been working better.
organizational skills improved
creative thinking improved
ability to concentrate improved
feeling more normal but not done.
i have something like a cold sore on the sides of my mouth - dry and cracky.
very tired...that's the flagyl?
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Have you seen improvement on the Flagyl? I understand all the herxing, but was interested in whether you thought it was working. How long do you expect to be on it?
I have been on plaquenil, Vibramyacin, and Claryhtramyacin (sp?) for about 6 weeks and have had some moderate herxing, nothinkg like yours. I am doing must better the last couple of days and hope this lasts.
I am also interested to know how everyone on the board was diagnosed with Lyme. I had 3 positive bands on the western blot and many of the clinical symptoms (although nothing obvious like the massive knee swelling you read about). My LLMD is not certain it is Lyme, but thinks it is likley and is treating it as such anyway. Other doctors (even one who was LL) would not have treated me at all becasue I did not have the requisite 5 bands. I am interested in others' experiences to help confirm my diagnosis.
I am also interested in learning more about how Flagyl effects Bb.
Thanks
NH Steve
Posts: 5 | From NH | Registered: Feb 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Yes, definately feeling improvement! Ramp up slowly. Take with with food.
H
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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bettyg
Unregistered
posted
quote:Originally posted by NH steve: Heather,
I am also interested to know how everyone on the board was diagnosed with Lyme. I had 3 positive bands on the western blot and many of the clinical symptoms (although nothing obvious like the massive knee swelling you read about).
My LLMD is not certain it is Lyme, but thinks it is likley and is treating it as such anyway. Other doctors (even one who was LL) would not have treated me at all becasue I did not have the requisite 5 bands. I am interested in others' experiences to help confirm my diagnosis. Thanks NH Steve
welcome Steve to the board...
I would like to suggest you copy/paste the above to start YOUR own post. Be sure to mark the box that you want to read ALL REPLIES; you get 1 chance to do this. So do it 1st!
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HEATHERKISS
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Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
The first time I took flagyl was with bicillin injections.
I can't remember the dose....few yrs back.
I herxed for 3 months but it did help alot....
I also took it for a time with cefzil.... herx was less severe and it did help some.
I've been treated for 13 mounths now. I've been on 1000 ceftin 4 days and 1000 Bixin 3 days for 30 days. And having a rough time with traviling joint pain and tendon tightness, like all of my tendons are shrinking. wakes me up at 3am every morning.
I am to start Flagyl, 250 mg 3x day, Saturday and am nervous after reading these posts. My doctor says I might feel bad for a day or two. I am working full time and am worried if I feel much worse, I'll have to start taking time off.
Then again I feel hope full maybe the Flagyl will be the abx that will work for me.
Thank you every one for sharin your experince, Strength and hope.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I was nervous too, but so far im handling the flagyl better then the other abx i was on...doxy and cedax....we shall see when i increase the dose today.
i would start off slow if you can.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
The headaches are back..... 2 days so far. It's been a long time.
It sucks when you are not used to the pain. I had alot of painfree days.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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I cannot for the life of me get up to 250mg three times a day without losing my ability to walk. After several days of talking 2 pills, I get brave enough to take 3 and then my herx gets too severe. I take a day off, then start slowly back up again. This is insane. I should have been done with this bottle long ago.
Adding the heparin made it even worse.
It also makes a person feel really down and hopeless. yuck.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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HEATHERKISS
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Member # 6789
posted
Doing well again. Soo It's about 3 months on the flagyl.
I have been able to work 3 days per week for the past 2 weeks. Yipee!
I am getting nightly headaches. Sinus medicine helps. Not sure what the headaches mean.
I did suffer for years with daily headaches before diagnosis.
Who knows? I'll ask the LLMD on monday.
IMA???? Did you finally get up to dose?
Can't give up? What's going on?
Betty G Did you start yet?
Anybody? Everybody? How are you?
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Flagyl, I am in my 4th week kind of....my first week i started on 750 mgs (so stupid), I thought I was going to die....anxiety/panic non stop HYPER sensitivity to everything my clothing, the rug beneath my feet, my cotton bed sheets, I couldnt sleep at all, I was super parnoid (musta really got in the brain)...
my doc said and i quote"lets stop for a week....if you feel better your going back on it...we will start out slower"....
so I came off a week felt GREAT so I knew I had to go back on...(he put me on valuim which helped alot through the neuro suff)
Now im back in my 3rd full week at 750 mgs a day and I have had nothing but significant improvement neurologically since the flagyl I have it paire with 2 grams of IV rocephin (in my 10th month of that)....
I do have chronic bathroom problems now though that started with the flagly may be the drug may be yeast not sure taking nystain not really helping with my diareah (SP?) but its dealable....Jill
Oh and I am super fatigued by afternoon which a symptom that cleared up for me long ago, and is back now wonder if its the flagyl???
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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HEATHERKISS
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Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi Heather & all, Well, I've just finished my course of Flagyl & Ceftin. I've been taking the Ceftin for about 6 months and started pulsing with Flagyl for seven weeks.
Not really sure where I'm at now, I have been feeling a lot of my old symptoms returning so I'm not sure if that is herx. I stopped taking a lot of my supplements because I wanted to see what might be working and what wasn't, so it might be that.
I'm to have a break for a few weeks from the abx and see what happens. I'm bracing myself!
Take care all, MMM
Posts: 229 | From United Kingdom | Registered: Jul 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Heather,
Glad to hear you are doing so well.
I have an appt tomorrow with our LLMD.
I stopped the flagyl since it was for another infection. Towards the end i was having a lot of foot burning. I dont think I herxed much if at all.
Im still having a lot of bladder problems...and burning.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Firecop, Yes! I have been very tired on Flagyl.
Mimoma, Good luck on your abx break!
Can'tgiveup, You've probably have been herxing all along. So the antibiotics have been working at killing the lyme bacteria and maybe a coinfection.
Bartenella can make your heels or the bottoms of your feet hurt. Weird symptom huh?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Monica
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Member # 224
posted
HEATHERKISS, Just saw this post for the first time today. I believe you and I and can'tgiveup yet are seeing the same LLMD. I started Flagyl two weeks ago today. Worked up from 250mg to 750mg per day over the first week. I haven't been working these past two weeks so I don't know whether or not that is having an effect. I am still using my walker, and some days the six steps to the bathroom from bed are six too many, but I am actually getting painfree HOURS. This is the most progress I've shown to date.
Hope it's going well with you.
I don't have headaches but I do a lot of sleeping.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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HEATHERKISS
Frequent Contributor (1K+ posts)
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posted
Monica,
Dr. S
yes...... I really quite tired.
H
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
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posted
bring up for others
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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Member # 6789
posted
Well,
It's about 3 1/2 months on flagyl and doryx. I just keep feeling better.
Working 3 days a week has become an easier goal. I can clean and cook on the same day. Laundry takes only a day as apposed to a whole weekend.
I can actually go to bed and 11pm and wake up at 7:30am
This month my "friend" was normal and I didn't get tired.
Please anyone on flagyl post their herxes...... experiences and outcomes on this post. I noticed a few newbies asking about flagyl.
Jump on. Tell us whats going on. This is in the newbies link and could help others.
Heather
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi Heather and all, Glad to hear that you're still improving Heather, that's great news!
I've been off ABX for about four weeks now. I've just gone down with my first cold in a couple of years so I'm feeling particularly crappy at the moment! But I'm hoping that its a sign that perhaps my immune system might be starting to work properly.
I'm going to give it another month and see how things go without ABX - I don't feel as good as I did while I was taking them so I may have to go back on again.
One very prominent neuro thing that I have noticed since stopping Flagyl is that I don't feel as emotionally stable as I did while I was taking them.
love to all of you, MMM
Posts: 229 | From United Kingdom | Registered: Jul 2005
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I'm adding Ceftin to my Mino tomorrow and then 4 days later....Flagyl.
At some point I throw in the high dose Artemesinin thing.
I'm already losing sleep over this new series of drugs. I suspect my no-herx days may be numbered.
Posts: 175 | From ma. | Registered: Aug 2005
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Boomerang
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Member # 7979
posted
Hubby is still on flagyl.........very steady low dose. He improved and improved very slowly. The last couple of days though, it seems his old symptoms are back. Feeling pressure on the brain, extremely tired.
Possible herx, I guess. Not giving up!
Posts: 1366 | From Southeast | Registered: Sep 2005
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cantgiveupyet
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Member # 8165
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Up
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I'm starting Flagyl too. I'm suppose to start really slow and work up. I'm a little scared.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
Kathy, I was really scared too, after reading about all the Flagyl experiences here. I have been on 1500 mg a day for 3 months (+ 2 gm IV Rocephin). I have not had any major herxing. I also didn't see any real improvement, but lately things are going in reverse. I guess it could be my way of herxing.
If I've learned nothing else about Lyme, it's that everybody is different, and everyone seems to react differently to whichever medicine they are on, depending on alot of different criteria.
In the last couple of weeks I have started to stutter again, severe fatigue, burning skin, and the most painful and burning feet I could ever imagine...getiing worse every day.
The only worse thing has been the depression and crying jags....horrible!
I see him on Thurs, and I'm pretty sure he's going to change my meds. This time I'm not going to read about everyone elses reactions to whatever drug he puts me on til later.....I want to see how I feel on it first.
Best of luck, and try not to worry, you're killing those little beasts!
Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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HEATHERKISS
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Member # 6789
posted
Hi Kathy,
I've been on flagyl and doryx for 4 months now.(I think... not good at keeping track)
Anyway it started out tough. Looking back it is so worth it. I worked up just like you are going to do.
Start with one pill a day for 2 days. Then 2 a day for 2 days... and on and on. I could not tolerate 500mg 3x a day.
I only take 500 2x a day and it has been plenty.
I feel smart again. I do alot less of walking from room to room trying to remember what I'm doing.
Good luck and healing thoughts your way,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
I started Flagyl 4 days ago. I am only suppose to take a small sliver of a 250mg tablet once a day for now. I can't believe that small of amount could make me sick, but it does. It tastes terrible too. I just get really tired feeling, with a headache, my head feels spacey, and it gives me a stomachache.
I don't think I'll ever be able to take a huge dose, but hopefully I will be able to take more then I am taking now.
It's still better then the tachycardia I had on Erythromycin.
I don't care that you can't have alcohol while on the Flagyl, because ever since I got sick I get really sick from alcohol anyway.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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HEATHERKISS
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posted
I'm still doing pretty well. Work 3 days this week.
The flagyl herx is worth my wonderful life back.
Slowly ramp up..........
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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Member # 6789
posted
Flagyl buddies what's going on? How are ya?
HELLO! Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi, I'm starting Flagyl tomorrow, wish me luck! Dr. has me at 500 mg 2x/day for 10 days on 10 off-- what dose and pulse is anyone else using? Only other thing I'm on is Ketek right now.
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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posted
My 15 y.o. daughter (who weighs about 112) has been taking 250 mg. 2x/day of Flagyl, pulsed 14 days on and 14 days off. During her second course, she developed tingling in her finger and hand so I stopped 3 days early. I need to call her doctor to see whether we should start up again when the 14 days off is over.
Posts: 164 | From USA | Registered: Jul 2005
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HEATHERKISS
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Member # 6789
posted
I get alot of burning sensations. I'm on doryx and flagyl 2x a day. no pulsing.
No breaks. I was told I can stop when I'm 100%.
Was the tingling really bad? Was your duaghter freaking out?
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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