Submitted by yguner on Wed, 2006-10-04 11:26

Hı everybody,In thıs update ı must say that Flagyl (Metronıdazole) ıs helpıng some other complıcatıons that ı have, such as the rash behınd my leg. I trıed antıfungals (Lamısıl 2 months), antıvıral (acolyver 1 month) but the rash dıd not go completely, ı had some dıe of reactıons when ı was takıng antıfungals and antıvırals but the rash dıd not get effected wıth them as ı expected. The only way ı found whıch helps thıs rash problem ıs b-12 shots and Flagyl. I have been takıng Flagyl 1500mg/day along wıth Doxy/Roxy sınce september 10th. and ı trıed to stop Flagyl once wıth the rash appearıng 3 days later, so ı am takıng Doxy/Roxy/Flagyl everyday now. The rash also comes back ıf ı mıss a shot of b-12 even ones ın a week(3 tımes a week ıs ok for me).I don't have any bad reactıon to Flagyl at all, ın fact ı feel better wıth ıt , ı have less spasms and more energy now than 2 months before, my hands are stıll ımprovıng. My spınal cord have a lot of actıvıty ınsıde, ı feel my axons and nerves dıe faster because of Flagyl but ı guess ı can handle that. I thınk thıs ıs the last stronghold of cpn and cpn ıs loosıng ıt. Thats ıt for thıs update..Best wıshes, Guner

Oh Wow wow wow!! Great job ! Flagyl every day?? holy cow! ANd hands getting better more and more Yeah! Guner I am so glad you took time to write! Thank you so much Good for you! I can't wait to hear what happens to your recovering self next
marie
On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.
"Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Guner, This is really good news and interesting. Your tenacity is amazing. I also get strange rashes about 3 days or so after the pulses. And they're all over the place, from head to toe. They last for about 4 or 5 days or so and then disappear, but I didn't associate the disappearance with B-12. It does make sense though. I also bathe in epsom salts and this seems to abate the problem a bit. It's all too strange, but I've gotten to the point where flagyl just makes me feel better all around (after two weeks) and there's a perceptible change in the numbing and flexibility of my right and hand. I have less sleepless nights because my arm doesn't numb with the flagyl.

It's great to hear about your progress.

CAP 2/14/06 for Cpn-CFS/FM/CD

 Guner

I had to stop and register my amazement at your incredible tenacity and ability to take flagyl everyday.  My update is going to have to wait until after my risktaking this upcoming weekesd.   You inspire all of us!

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

yguner, It's great to see you blogging again!  I feel improved when I take Flagyl too, so I watch your blogs closely.  You're definately doing all you can to get rid of this bug.  Good for you!

kk2  :)

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Improvement with the rash and with your hands - this is wonderful!

Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline,Zithromycin, Tinidazole

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Thank you for your kınd words, ı read your blogs closely too and ıt's great to hear about your progress Marie, Rıca, KK2, Altesa, Janıce C, ı thınk your supportıve posts are the source of my tenacity, thıs ıs a long journey and ı am glad to be ın ıt wıth all of you. Thanks agaın to everybody on cpnhelp...

On CAP's protocol for Cpn in PPMS since June 2004

Currently:  Doxy/Roxy, Metronidazole pulses 

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

 A lıttle update;
I had a lıver function test yesterday ,ıt was ın ıts normal range. I have been takıng doxy/roxy/flagyl combo continously sınce the sep.10th and ı thought ıt would be better to check ıt because ı am thınkıng to stay on thıs combo for a whıle.
 

On CAP's protocol for Cpn in PPMS since June 2004

Currently:  Doxy/Roxy, Metronidazole

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Glad liver is ok as that is a hard combo to be on full time - Best of luck!

 

 

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Nice to hear, Guner, that you are doing well.  My liver functions went up twice - both times were when I was on Rifampin.  Through careful observation it turned out to be the Avonex (an interferon) that I was on then - the dark ages for me - that drove them up.  When I stopped Avonex and was on Doxy, Azithromycin, Rifampin, and flagyl everything was in the low normals.    Thank you for more positive evidence that we will get the most benefit possible.

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

 Image removed.Image removed.Image removed.

 

On CAP's protocol for Cpn in PPMS since June 2004

Currently:  Doxy/Roxy, Metronidazole

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

 Lıttle update;

Yesterday ı woke up wıth a nausea and felt lıke ı needed to vomıt ,the nausea and vomıtıng stayed all day .I thought thıs mıght be because of continuous use of flagyl so ı stopped takıng ıt as of last nıght. I feel better today, ı don't have any nausea or vomıtıng .I thınk that too much dıe-off and too much polyprıns were causıng the nausea and vomıtıng, ı wıll waıt for a whıle before ı start takıng flagyl agaın.

On CAP's protocol for Cpn in PPMS since June 2004 - Currently:  Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

I am glad the nausea is better today. I hope the long pulse of Flagyl gives you some big improvement.  That was quite a long pulse!

Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline, Zithromycin, Tinidazole or Flagyl

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Could be, or it could have been norovirus, otherwise known as "winter vomiting virus": http://www.cdc.gov/Ncidod/dvrd/revb/gastro/norovirus-qa.htm rampant at this time of year and currently rampaging through our hospital, mainly brought in by visitors who don't know they have it until it hits, but it tends to only last one or two days.

Whatever it is, though, I think you will benefit from a break in taking flagyl, because you have also been working so hard with the Turkish MS people.  That must take it out of you.......Sarah

 

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks Janice C and Sarah, ıt was a long pulse but certainly easier than answerıng Turkısh MS people's questions about the CAP.Image removed.

On CAP's protocol for Cpn in PPMS since June 2004 - Currently:  Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

 Guner, you seem singlehandedly to have brought maybe all Turks with MS to our site!  You are amazing.

Rica    EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 34 pulses MS

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

 Thank you Rıca, ı thınk you are amazing too wıth a 75% recovery from PPMS,you are also my hero...

On CAP's protocol for Cpn in PPMS since June 2004 - Currently:  Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Hı everybody,

Interestıngly 5 days after ı stopped takıng flagyl ,the leg spasms and the lower back paın came back .They were gettıng harder to tolerate day after day, but ı decıded to waıt and see ıf they would ease. On the 10th day my lymph nodes ın the groin area were aching too, and the leg spasms ıncreased noticebly. On the eleventh day ı decıded to start the flagyl agaın and today ıs the thırd day sınce started ıt, all the leg spasms and lymph node paın are gone, ı stıll have an actıvıty ın my spınal cord though but only ın the lower part and not paınful. Best of luck to you all.. Guner

On CAP's protocol for Cpn in PPMS since June 2004 - Currently:  Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Good luck with your continued flagyl use, guner.  I hope the nausea doesn't return and well done for managing the flagyl so long.  I may have to up my dose too!

 OK you two - enough!  You have implanted the idea of increasing MY dose.   Since I have  less reaction (I still function in the latter part) maybe I should do my duty and go from (shudder) 375mg to more.  Don't want to be left in the dust!

Guner, I hope you are feeling better.   

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 35 pulses NC USA

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

Hi Guner, great to hear of your improvements and I am interested in your experience with continuous Flagyl, not sure if I could do it, at least not at this time.   But I know that you are very observant about your reactions, so am not doing the mother thing of worrying about you.   Someone said that they were pleased to see you blogging again, I know that you spend a lot of time of the Turkish MS site, and yes I think all our new Turkish members come to us courtesy of your efforts.

Thanks 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Thanks Alex, Rıca and Mıchele. Yes ı feel better(no nausea-no spasms) I just want to kıll thıs bug as fast as ı can and flagyl ıs the maın weapon for that. I wonder ıf the older cpn bacterias have an advantage of survıvıng ın thıs battle than the younger cpn bugs ın our bodıes. All my best to you...

On CAP's protocol for Cpn in PPMS since June 2004 - Currently:  Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

 What an interesting concept, Guner!  Since I have only wild speculative ideas, this is something I will wonder.  This whole scene of strange, mysteriious diseases has forever been only in my "quack" compartment, but now I am here in the very center of it and know it is very real.  Maybe someone with background in depth will answer this question.

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 35 pulses NC USA

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

yguner- I seem to recall vaguely that you used Rifampin also for a time. Since I have added Rifampin to my regime I have had increased die-off reactions and much stronger pulse reactions. Dr. Stratton says that this is a result of "organismic conflict" in that the additional medicine closes off another route of survival for Cpn and thus more are being killed. I mention this as you might want to make sure as many escape routes are covered by the meds you are taking to get maximum effect. Dr. Powell also likes the Rifampin addition since it kills a number of important mycoplasm bacteria which can't easily be tested for, but may be co-infections with Cpn. The good news is that, despite all this and the Rifampin and INH, my liver tests are perfect. I think I have finally cleared my liver of Cpn, and the Ursa Forte seems to also be helping in this.

I see our referral statistics from the Turkish site now and then, and always think of you and your brilliant efforts at bringing this work to your people there. You are a banner carrier for us, much thanks. Are you getting many Chronic Fatigue/Fibromyalgia sufferers on the Turkish site? 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60% recovery. Ohio,

 Hı Jım, ı used Rıfampın for one year during the fırst year of CAP then swıtched to Roxy , and ın the future ı mıght add ıt again but for now Flagyl ıs so strong and kıllıng alot of cpn ın my spınal cord. I feel lıke some of my spınes got replaced especially ın my neck and below neck. I am sure ı have co-ınfectıons too but my fırst aım ıs clearıng the ınfection from my spınal cord and get raıd of ms:) Thank you for tellıng me about the "organismıc conflict" because ıt ıs always good to know that there are more ways to get maximum effect.

I only focused on Turkısh ms sıtes untıl now ,therefore ı don't know ıf any Chronic fatigue/Fıbromyalgıa sufferer joıned to cpnhelp or not. Maybe ı should look for them ın other Turkish web sıtes. Best wıshes...Guner

On CAP's protocol for Cpn in PPMS since June 2004 - Currently:  Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

I think we shall see you on horseback yet. You're still my hero. John Wayne pretended to be one in film, but you're the real tough, brave, steadfast, determined, modest thing.

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

Thanks Mackintosh Image removed.

 

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)