And just when I thought I was cruising through...

Went to my Dr on Monday after six weeks of Doxyi 200mg/MWF of Azith 250..time to add the  bad boy.  Flaygl.  He voted for 250 1x day for 5 days since I had only minor reactions to the other meds.

 Went straight to CVS and took my first dose Monday night.   Tues, Wed, Thursday came and went, I have been working about 50 to 58 hours the past couple of weeks and still doing reasonably well.   Sat in the infrared sauna for 30 mins on Tues evening and got shaky so no more for the week.  

 Last night I got home and took my dose of Flagyli about 8:30 pm and within 20 mins began to get nauseas.  Then the pain in the pit of my stomach and body aches hit me like a mac truck.  Then the massive diareha.  About 2am huge shooting nerve pain down my left side (weak leg) kept jolting away and at 4am I shuffled my way to the bathroom to loose my dinner.  I was hoping that would help the stomach pain but to no avail.

 Managed to draft out an email that I wasn't going into work and literally crawled up the stairs to try and nap through the extreme body aches and stomach pain.    Tons of yellow mucus came out of nowhere when I woke up.  

 Slept most of today and stomach pain finally subsided enough to take some Advil with relieved some of the aches. 

I thought I was cruising right along with the pulse and certainly did NOT expect the reactions to come on like that.  Don't remember vomiting to be a huge side affect of other either.  At times I wonder if I caught strep from my son who has been home sick all week but with all the antibioticsi I'm on, unlikely huh?

After a really long nap, I'm researching on here about pulse reactions and when i can expect to feel better.  Dreading having to take my last dose based on how last night went. 

Guess it just goes to show that it aint over until it's over and when we get a little cocky or complacent with not many symptoms and beginning to doubt any progress...WHAM! 

 Lisa CAPi since August..NACi 2400/Doxy 200/Azith MWF/Day 5 of 5 day plus of 250mg of Flagyl    CFSi/FM with mycoplasma pnemonia

Comments

Too funny!   That little

Too funny!   That little ditty is going to be running through my head for days!Smile

On Combined Antibiotic Protocol for Cpn in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

 Lisa- I can indeed see

 Lisa- I can indeed see that your attitude is unfortunately similar to my own-- if one is good, four is better...

I imagine you stringing up lights on your tree, singing that old Xmas standby:

"Por-phyria, por-phyria... How irritable are your symptoms..."

Followed of course by flagyli laced Egg Nog (I know, don't gag...) and lumps of activated charcoal for your stocking-- but only if you've been good. 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Lisa, you fit right in here

Lisa, you fit right in here - all the way from the aches to the aching with laughter. Did you tell your co-worker what you are doing? Maybe the other person is "doing drugs" too!

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 48 pulses NC USA

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

Well, I finally surfaced and

Well, I finally surfaced and made it to work today..thank God for the weekend. 

No more nausea past that 4th day and while I knew it was good advice NOT to take the last dose...I was more curious than smart so I did.  Think I might be following in Jim's footsteps....hey, if 4 doses did this...just think was 5 could do.    I figured I could call in sick or go to the er if it got worse and I just needed to "finish" what I started.   We don't think very straight on day 5 do we?  

Not much of a reaction though, the extreme fatigue and aches got better each day but the cold sympmtoms, sneezing, massive drainage and now chest coughing are still around.   Finally getting an appetite back, I lived off crackers/toast and oatmeal for 3 days.  I upgraded to soup today.

I had one emotional meltdown with my inability to get lights on the tree, presents wrapped, son's room cleaned and my husband being gone all this week with the house a total disaster....but I fought my way out and told myself that a normal reaction and "get over it".    

But I wonder....I went to work today and my co-worker in the very next office whom I spend alot of the day with walked in with the very same sypmtoms....nausea, diaharrea, aches, massive drainage.    We both agreed it was like a triple threat..stomach bug, then the flu, and then a cold.   Could is really be that I caught a bug at the same time as the pulse.   On one hand I hope so but then where is the flagy reaction, guess we'll have to wait until next one.  I cannot a double dose and every single day...shudder...

On dosing...my doc said to come back after 3 weeks off.  Is it okay to wait three weeks, somehow I remember seeing folks pulse every 3 weeks so only 2 weeks off inbetween.   

While I'm still sniffling/snorting and alittle achy, now I'm ready to do it again to see if I caught a bug from a co-worker or the flagyli kick my butt?!     Just too weird as the symptoms fit both things.

You guys are the best and I learn so much from you, thank you for the input, this is crazy stuff to talk to folks about...even medical folks who poo-poo me and tell me I'll be overrun with yeast, how come it takes so long to kill the bacteria, why haven't we heard of this etc.    You make me feel normal to see the humor in the struggle and keep up the energy to fight the fight.   I'm not worthy of what some of you are facing and thank you for accepting me where I am on my own path, my prayers are with each of you!

 Lisa -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 2400mg.  11/6 NAC/Doxyi 100mg 2x;Azith MWF --Day 8 of Pulse 1 of 5days of 250 mg Flagyl

Aug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 1200mg.&nb

Lisa, Think of a

Lisa, Think of a twenty-eight day month. You take flagyli on days 22 through 26. Three week break from flagyl, not two. Congratulations! Oh, and you are EMINENTLY worthy of every single second we give you. One day, you'll do the same for others here.

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

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

MacKintosh....I MUST be

MacKintosh....I MUST be feeling better cause as soon as I read your post, I went thump on my forehead and giggled...Exactly like birth control.!!!  The flagyli is like the "sugar pill"...NOW I get it.      

And I am a big believer in the pay it forward philosophy...Thanks! 

 Lisa Aug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 2400mg.  11/6 NAC/Doxyi 100mg 2x;Azith MWF 12/10 Pulse 1 250 mg Flagyl

Aug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 1200mg.&nb

Lisa, I'm laughing out

LaughingLisa, I'm laughing out loud! Anyone who compares flagyli to the 'sugar pills' truly MUST be feeling better!

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

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

 Lisa, make sure you eat

 Lisa, make sure you eat with that flagyli and keep a bit of food in your stomach if shaking and nausea are a problem.

 Im on Flagyl 500 mg twice a day continous (crazy yea) ive already cut it back to 250 mg twice a day. Doing sorta ok (halfway bedbound) but reading this is NOT helping. :P 

 Nope im not pulsing unless I have to. So dont tell me to unless you see me losing my mind. 

CAPi- zithro, flagyl, plaquenil - CPNi +, fibromyalgiai, endometriosis, b12 deficiency

CAPi- zithro, flagyli, plaquenil - CPNi +, fibromyalgiai, endometriosis, b12 deficiency

Lisa, the good thing is that

Lisa, the good thing is that you can't be in any doubt that this treatment is doing something for you.   Another good thing is that you now know the measure of it.   Your next pulse may be at a lesser dose and you will slowly weather each pulse with less reactions.   Each one of us reacts differently to Flagyl and even though there are plenty of warnings out there about the possible effects it might have on us, how are we to know until we try exactly how we are going to feel.   Now you know and you can act accordingly.

This three/four day delay is infuriating, but it seems to me to be typical.   In my experience also the recovery after the pulse takes two forms, it takes at least two days to recover from the nausea, spaced out feeling and the immediate discomfort of pain brought on by flagyl.   It may take longer for these symptoms to disappear completely.   And even once they have gone, they may come back again although in my experience they never come back quite as bad.

Hang on in there.... It does get better. 

Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Ruth, you're post always

Ruth, you're post always make me laugh. 

Mphs, TN. CFSi, hypoT (Hashimotos), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. 6/26/07- CPNi Titer 1:256 (normal 1:16); 6/27/07- NACi; 7/2/07- doxyi 100, 2xday; 7/19/07-9/7/07- Biaxin.; 9/8/07-azith 250 mg m/w/f. 10/18/07-1st flagyli pu

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

 Yes, we do have a warped

 Yes, we do have a warped sense of humor around here. Yes, you are done with your pulse. Yes, nausea and vomiting are an effect for some of flagyli. I couldn't get through more than three doses without that reaction, hence why I switched to Tinidazole which didn't hit me that way. Gatorade is probably better than water for a pulse anyway. 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Lisa, MacK is right - stop

Lisa, MacK is right - stop for this pulse unless you can take some time off. This stuff does blindside us when we think we are home free. But - this is one down that you con't have to do again. And Ruth and Raven are also right - maybe just doing this makes us experts!

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 48 pulses NC USA

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

ohhhhh you NUT you!!! Well,

ohhhhh you NUT you!!!

Well, I always say, expect the unexpected.  This is day 11 from my last pulse & it is still haunting.  Must have got to the critters in my gut again, stomach not happy & the gas.....oh my, good thing my husband is out of town.  I smell like someone died!!  but then something is dying & these critters don't leave without fussing, kicking, snorting & farting first.

Stay out of the sauna for any length of time, take your detox stuff, lots & wait it out.  Hope you feel better soon.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Re vit. C flushes . . .

Re vit. C flushes . . . make sure your digestive system is up to it. It is apparently not for the faint of stomach. See the recent thread on it.

PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

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

I see that mine is the

I see that mine is the first comment and I'm no more than another sufferer but I'd say, emphatically, do NOT take the next dose. You've had enough. I managed 5 pills the second time and was too weak to lift my hand to my mouth for the 6th pill. It took me weeks to get over the effects. It probably won't be that long for you, but you are going to be feeling this for awhile. Just take it easy. If you have some charcoal pills or yaeyama chlorella in the house, that will absorb some of the toxins that are making you so sick. Ditto for an epsom salt bath with 3 cups of epsom salts. Soak for 20 minutes. If you don't have epsom salts but you do have Dead Sea salts, that will help too although obviously you can't put in 3 cups. After the bath drink water because you will be dehydrated. If your stomach is too upset to hold down water, get Gatorade or Hi-C. Your stomach does not recognize these drinks as foreign substances.

Good luck.

PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

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

The Vanderbilt Protocoli

The Vanderbilt Protocol says the following with regard to "additional antimicrobial agents" like Flagyl, "These agents, like the amoxicillini and probenecid, are introduced very gradually, being given initially once per day on only one day per week." Thus, taking Flagyl for five days straight on your first pulse would be a rapid start.  What you described sounds like the die-off reactions I have experienced.  If that's the case, the good news is that you will live and you may even see some improvement in another week or two.  The bad news is that since the dying bacteria have poisoned you as their "last great act of defiance" the next week or two is probably going to be unpleasant.  Remember to drink lots of water, take your charcoal (or WelChol or Questran) and do your vitamin C flushes.  You will get better soon.  You should also make sure to let your doctor know about how this pulse went so that he/she can take that into consideration when you set the dose for the next pulse.  

Look on the bright side, you've probably only got another twenty or thirty pulses to go. 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Second pulse metronidazolei 12/2007.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Look on the bright side,

Look on the bright side, you've probably only got another twenty or thirty pulses to go. 

We must be warped people because I laughed and laughed at this.

 Water is not an option, I tried and my body revolted so my husband brought home a ton of Gatorade for me.

I thought 5 days pulsing might be agressive but it was only a 250 dose.  Had it time to where I had the weekend to crash..didn't quite make it but had worked enough hours for it not to be a work issue.  I'm hoping that I can be human by Monday..that's my goal.  Doing a C flush now and have been able to hold down some toast today.  I was just getting more and more optimistic as each day passed and nada, nothing....HAH 

Forgot about the Epsom bath..off to go soak!!!  If there is a positive of all this, I think this got my husbands attention of what I'm facing. 

LisaAug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 1200mg.  11/6 NAC/Doxyi 100mg 2x;Azith MWF;Pulse 1 5 days Flagyli<

Aug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 1200mg.&nb

Lisa, You're done for this

Lisa, You're done for this month. No more flagyli for you. Time to concentrate on taking care of yourself 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

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