Is it just me or does Flagyl still make any of you deathly ill?

Submitted by Lynnp on Fri, 2009-12-25 23:26
I have been on cap since Oct of 08.  I am on my 8th??? pulse and still get so darn sick!  Feel so horrible and the yeast is raging after 5 days.  One time I took 10 days of it and didn't get sick at all.  Every other time I feel horrible.  Three days, five days, seven days - still horrible.  I take Diflucan, probiotics and yeast fighers and "yuck" suppositories. I think I'll ask doc for tini but don't know if my insurance will pay for it.  Ibuprofen, moppers, etc.  I just had some "bowel" tests done so don't have results back yet.  Maybe that will show up something.  Or, I may just be one of the lucky ones that can't take the flagyl because of the side effects.

LynnP, Could you be more specific as to what "I feel horrible" means specifically in your situation?
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Fellinjg horrible is itchy, swollen all over (take diazide too), trouble breathing, so hot I'm almost sweating, headache, achy all over, feel fluey, etc.   Ever since I started on full time antibiotics in 1990, a few years later I've felt like this.  I'm a walking yeast factory.  Been on the yeast free diet, no alcohol, only honey and sweet and low for sweetness, etc.  I have really been thinking about cutting out all the antibiotics and just taking the nac and 10,000 mg a day to see what happens.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynne,you might try Lauricidin for the yeast. It is supposed to be also effective against Cpn and viral infections. If you try it, go slow. It can provoke a die off reaction.

http://www.lauricidin.com/

I have also found relief from yeast with Olive Leaf Extract. You can find that at iHerb.com

Hope this helps,

Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

I've been on the protocol for several years now and the flagyl has always knocked me for a loop. Last year I tried 2 pills every other week (I was done with work on Wed. at 7pm and started again Mon. at 4pm). The result was that I slept from Thursday through Sunday and just barely made it to the 4pm Monday class. I've now switched to tini and take 2.5 pills avery 3 weeks. It's much easier although still very tiring and debilitating for a couple of days. You do what you can. Healing may be slower, but you live through it. Try tini and good luck.

Nancy 

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Why tini 2.5 pills every 3 weeks? Did your doctor advise this or are you self doctoring? I know a lot of us are.Also, have you ever gone back on minocycline? We are all such test patterns!

Continue to do well. Happy New Year.

diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,

Loulou, sorry in the delay in getting back to you -- my computer is in its death throes. I react very strongly to all meds. My doctor and I tried to graduate the dosages but in order to function at all and work even part-time I have to take low doses. I only take 100mg/day of doxy and I swtiched from flagyl. 3 tini take me out of commission for 10 days -- I can't even stand. I teach MW 4-7, so if I take 2.5 pills on Wed evening I'm goud to go on Monday at 4.

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Flagyl was so miserable for me I had to quit. It wasn't too bad in the beginning but it seemed each pulse got harder and harder to tolerate. I just can't do it any more. I switched to tini. So far so good.

As I sit and write this i am on a Flagil pulse and it is hell.I'm on 7 days every 3 weeks and I hate it.I am in pain and want to cry all the time.I always have a yeast problem that nothing seems to fix but it gets worse on the Flagil.So many times I think of quitting but my husband is on my case to see it through.I come onto this site and see i am not the only one and this does help as warpped as that sounds.When not on Flagil i am now feeling better.Good energy levels just alot more consistant pain which the doctor tells me is a good sign from what she understands of all of this we are following.My brain fog still makes this all a mind field for me.You and I both have Fibromialga and similar it seems as I also had a 5 day pulse and was fine and thought I had cracked it but no it all returned with the next pulse and they have been bad since.Goodluck and try and stick with it,I know how hard it is but your not alone.PS I have been on this protocol almost a year.It really seems the 18month 2 year mark is a turning point for Fibro sufferes so hang in there.Happy New Year.

sunshinecoast Australia.Fibromyalga suffer recently informed I have CPN started on Doxy 50ml twice a day 21.2.09 

Thanks for the encouragement.  I just got tini to replace the Flagyl but haven't started on it yet as I had to start Biaxin and drop the azithromycin.  I don't think it was helping me.  Still on doxy too and all the other stuff.  I've been on cap since Oct 08 and am still feeling bad but others also say it can take 18 months to 2 years.  I didn't show up anything for the cpn but all my symptoms warranted trying something.  Been sick for 20 years (constant sinus infections, asthma, allergies, etc. and fibro since 1995.  Being on antibiotics constantly for 20 years has given me permanent yeast, vaginal, thrush, gut, etc.  Can't even have a glass of wine without feeling bad.  What a bummer! Flagyl is known for making yeast worse and it sure does it to me.  Hope this year is better for you and me!

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

No, flagyl has never made me ill, but on day three of a pulse, I often got testy enough to know I should stay out of situations where I might have to deal with people on a 'customer service' level. It's much better now. ;-)

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I have problems with the Flagyl/Metro; it really gets me in the gut & mood.  I take lots of moppers for the die off etc.  I am considering getting tini or another abx on line instead.  I am also checking out the caffeine posts as I am 2.5 years into treatment now & have only been able to get to 1 gm flagyl/day for 5 days & that is all I can tolerate. 

I must say too, that out of 24 pulses  now I did have 1 pulse that found me with energy & no gut sx.  My last pulse was a bit easier in the beginning with a bit more energy but day 3 ish I was again slammed.

peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Ruth, Give Tini a try, it is all that I have taken and I was able to get right up to full pulse with it starting with my second pulse.   Also the fact that it is taken only twice a day is a benefit and I can take it first thing in the morning on an empty stomach, the same was true with Roxi.  Louise
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

thanks Louise, I take Doxy 200 mg daily & Azith MWF 250 mg & pulse the flagyl.

thanks too for the pm's, greatly appreciated; just haven't had the energy to reply back!

 

peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

I did flagyl for almost four years and now use tini. Tini makes me feel toxic and yucky but it is not as bad as flagyl_ Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Ruth,

It is exciting that you made it to a gram of flagyl!   It took me a long time, too, so if you can, just keep chipping away.  I was NEVER able to take more than 1375 mg a day until last year when I was on 1000 mg of flagyl every day for six months.  You will get there.  I also got incredibly cranky on flagyl and was a zombie much of the time.

Your post made me realize that I wrote the time-line wrong in my latest blog and must correct it.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

thanks for the support Rica, it is great to hear from you. 

thanks peeps

peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<