Cpnhelp.org

Alexandria- how far into this combo are you? If it's new, it might just be the better tissue penetration of rifampicin and the stronger killing effect of INHⁱ. Sarah seemed to feel the immunomodulatory effect of doxyⁱ/roxyⁱ was significant for her. I would think it's hard to separate from the potency issues.

That said, I've stayed on the doxy/azith and added the INH. That's enough of a hit for me, I can't imagine adding rifampicin too! The INH is renewing some symptoms for me that I didn't quite expect, but I expect more improvement too from it... eventually.

On Wheldon/Stratton protocol for Cpnⁱ in CFSⁱ/FMSⁱ since December 2004.

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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I'm always so aware of the different costs for different disorders of increased inflammationⁱ from treatment. For me it means increased pain and brain fog (especially at this point), for those of you with MSⁱ it can mean not being able to walk. That's a big difference. My pain levels have been disabling before, but only temporarily. To loose my walking would be much scarier, since I would always be wondering if this inflammation will result in damage.

We all have to measure the "side effects" of treatment with our own condition and moderate as we need to.

On Wheldon/Stratton protocol for Cpnⁱ in CFSⁱ/FMSⁱ since December 2004.

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

It may or may not help but when I began abxⁱ in Sept, 04, my very first was Rifampin for one week- it was available.  Then I added Doxyⁱ which combination was until Aug 05.  I was extremely mentally foggy and physically disabled I think increasingly from Sept through Jan and maybe longer (I was off abxⁱ all of Mar- LF).  That was a very bad time with my walking so bad that we got me an adult tricycle so I could get to the barn.  (I say there are no ex goat people- just dead ones. How close I was!)   It is a totally different life now with the horrible part in the past and my body improving every day.  Not steadily!  Some days are so good that my walk is almost normal and others or late night after working hard (!) I limp badly.

Today I took one of our does to the Vet. School and one of the main profs. whom I have known for 16 years could hardly believe what he saw today and went to find one of the young surgeons who was just diagnosed with MSⁱ.  She had just gone in for surgery so he left my phone number with her.  And one of the techs responded to my question with a yes and called her friend in VA with this site and my ph. no.  Alex, somehow this is supposed to encourage you to keep at it.   I got a letter "disowning"me from my neurologist today. " Since I have decided not to follow his recommended treatment", to see him again we have to start over!   It is about 6 weeks since Avonex and I feel great.

 

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Rica - Disowned by someone who refuses to admit there is room for error and room for education and growth?  Good riddance!  Funny how several of us have been disowned by the incompetent, the egotisitcal and the weak.  Conversely, does that make us the smarter, more open, intelligent and more able of the relationship?  Hmmm, perhaps.  All I know is, we are improving, in the face of the naysayers and we will prevail when the day is done.  The road is tough and tortured sometimes, but it's the right one.  I wasn't about to roll over and lose my ability to walk, to function fully and to enjoy my next several decades, just to please some pompous fool who thinks 'that's the way we've always done it, so it must be the only way to do it'.  Descending from soapbox now... MacKintosh

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

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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

Rica and Mack---I'm with you on this.  I still need to visit my stubborn neuroⁱ next month, and I would rather not.  His doubts and negative style tend to cause my spirits to plummet.**le sigh**

Just a note:  A few days ago I had posted in my blog that I was feeling much worse, though I had not changed my meds, supplementsⁱ, or diet.  I realize today that I had just restarted Copaxone[after a one-week hiatus] the  day before.  Could it be that Copaxone makes me feel worse?

 

Rica, I thought of you, wonderful you, stopping your Avonex!  I'm beginning to consider that possibility myself.

 KK2  :)

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

I took INHⁱ, rifampicin,flagylⁱ combo for 90 days.Because of the bactericidal antibiotics killing effect, i had massive die-off reaction especially in my legs,i could feel dying organisms making pain in my kidneys and in my abdominal area.And also they were causing swelling in different parts of my legs.INH is a very effective antibiotic.I think your combo will kill a lot of cpnⁱ bacteria and cause painful die-off reactions.The question is to decide whether killing more bacteria with more pain in a shorter time or stick to the alternative combo with the less pain for a longer period.  

started abxⁱ on 06-06-2004

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On CAPⁱ's protocol for Cpnⁱ in PPMSⁱ since June 2004 - Currently: Doxyⁱ 100mgx2/day - Roxyⁱ 150mgx2/day - Flagylⁱ 500mgx3/day (Continuous protocol since sept.2006)

Well said, Guner! 

You  should know!  You have incredible determination and courage and I know what I am talking about.  We will never get a "hero medal" but I think we all have a very good idea that many of us deserve one.   You put it very clearly.    Every day you are an inspiration and not only to me but to all of us.

Rica

Ignorance is voluntary bad luck.  Lauritz S.   A True Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Hi KK2

I only took Avonex and don't really know anything about Copazone.  Do you take both?  I can tell you that for a number of weeks I realized I was getting less and less benefit from Avonex and had been stretching out the time between shots.  I finally just kept waiting to slide down but it didn't happen.  My body said THANK YOU!!  

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Wow, thanks everyone.  Yguner is my inspiration to carry on with the INHⁱ, rifampicin combination and if he can do it in Turkey then so can I in London!  I've been on the doxi/roxi/flagylⁱ pulses for 8 to 10 months before I switched to the INH, rifampicn combo a fortnight ago.  I read somewhere on this site Dr Powell's suggestion to switch to the INH, rifampicin combination after about 8 months if one's improvements had levelled off.  As this seemed to be the case I switched although it was only after I had secured my prescription for INH, rifampicin that I noticed my night spasms have really calmed down to the point of not needing the anti-spasm mediction.  The law of sod is obviously in operation.

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Started CAPⁱ April 2005, right leg motor function now worse

Guner

I was reading the new posts and rereading yours I was quite suddenly struck with a thought-  are your posts getting longer?  I wonder if you have reached a new level of energy without noticing.  That would be really nice.  It certainly seems to happen that way.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Hi Rica,

I agree with you, i have better energy than before but my rash behind my leg certainly got worse and painfull. So I am not comfortable in typing for the last two days. Good luck on your flagylⁱ pulswe. mine is coming next week.

GUNER  

started abxⁱ on 06-06-2004

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On CAPⁱ's protocol for Cpnⁱ in PPMSⁱ since June 2004 - Currently: Doxyⁱ 100mgx2/day - Roxyⁱ 150mgx2/day - Flagylⁱ 500mgx3/day (Continuous protocol since sept.2006)

That is really great, Guner!  More energy seems to be a sign of good things happening.  I am sorry about the rash and wish it would disappear.  Please keep moving whatever you can because maybe one of these days some things may start working better and you need to be ready!

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Ok, Alex. I have to ask,  as one of those uncouth Americans-  what is the "law of sod"?  Is this a law only for those residents of  the land of royalty?

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

KK2 I have not taken cop for about a week and I seem to be better than ever. I thought to myself this Am after waking (a full nights sleep too)geez, I do not think I'll take it today either. I do not know if it was adding to my spasticity, which got better a week after flagyl 2 and while I was on cop, but I have gotten better and better and now am getting supersitious about what might be contributing to my functionality! However I am CERTAINLY having worse arthritis symptoms which I knew were lessened by the cop. Guys, I never talk about the arthritis but it's very bad ouch! knees, oh owwww. Let's keep in touch aboutthe cop angle OK amigo?
Marie

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On CAPⁱ since Sept '05 for MSⁱ, RAⁱ, Asthmaⁱ, sciatica. EDSSⁱ at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyⁱ 200, Azith 3x week, Tiniⁱ cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

Marie- the Cpnⁱ is at the root of the arthritusⁱ too, and flagylⁱ really brings it out. I found focal pain in knees, ankles, hip and sacroilliac often during flagyl pulses, but also in the week to 10 days after flagyl (or tiniⁱ) pulses. David Wheldonⁱ describes this post-flagyl wave in his website, attributing it to immuneⁱ system clean-up after the flagyl has killed the cryptic bugs. 

This has lessened significantly after about 6 pulses. Hang in there. 

On Wheldon/Stratton protocol for Cpn in CFSⁱ/FMSⁱ since December 2004.

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

Marie 

Sounds like you are sleeping much better.  I remember not too long ago that you had great anxiety about your lack of it.   You do take Glucosamine/Chondroitin don't you?  It takes at least 2 mos. to notice a change.  Please keep grinding away at this-  it appears you are gaining on it.  I have to brag- it will please you-  for the second day in a row I walked/ran a solid MILE non-stop.

I know nothing about cop- how often DID you take it? 

My sleep has improved tremendously, too, rhanks to Jim's pep talk about melatonon.  For 5 nights I have taken 1 little melatoninⁱ pill at 8 pm, gone to sleep at 11, and up fresh at 6. 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Marie, about a month ago, I had terrible joint pains. If I sat down on my meditation cushion on the floor, I had to crawl on all fours just to get up. After a few weeks, it got better. I have torn rotator cuff in both arms and that hurt and burned. I dug up my old physical therapy exercises and that has helped. Worst burning pain has been in my gluteal muscles. Ok, I now know, Cpnⁱ is a pain in the *!*#!&!!! Raven

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Feeling 95% well-going for 100. Still testing + for Cpnⁱ. CAPⁱ since 8-05 for Cpn/Mycoplasma P.for MSⁱ and/or CFSⁱ. Also EBVⁱ and HHV6. Doxyⁱ, Azith, Tiniⁱ pulses. NACⁱ, Iodoral, T3, BHRT, MethyB12 injections, Nitro patch, LDNⁱ, FIRsauna, methylation supps

THANKS Jim. There's not many people here doing it for arthritis. i have no progress there yet, though MSⁱ is better with no spasticity. And I also have sacroiliac issues. I first had sacroilliitis 15 years ago and it is a rare pain. It also can cause radiculopathy itself (do oyou have sciatica from yours?)and of course CPn can cause radiculopathy so I hope it goes....along with everything else.
I'll blog & I hope everyone does post their MRI's What a FABULOUS irreplceable resource!
blessings
Marie

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On CAPⁱ since Sept '05 for MSⁱ, RAⁱ, Asthmaⁱ, sciatica. EDSSⁱ at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyⁱ 200, Azith 3x week, Tiniⁱ cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

thanks Rica and Raven! GOod to know I'm in company. It is very painful. My hand is bad today so I have to stop
in my thoughts
mrie

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On CAPⁱ since Sept '05 for MSⁱ, RAⁱ, Asthmaⁱ, sciatica. EDSSⁱ at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyⁱ 200, Azith 3x week, Tiniⁱ cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

The law of sod is ,er, an English expression to summarize the occurence of something undesired or unexpected when something else had been desired and expected.  So just when you give up and decide to go home then whatever it is that you were waiting for will happen BUT ONLY once you've packed your bags, turned off the computer and started down the drive.  Or something like that. 

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Started CAPⁱ April 2005, right leg motor function now worse

Alexandra--Yes the law of sod is much like our "murphy's law" over on this side of the pond. lol!

KK2  :)

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

I have heard it said that Murphy was an optimist.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1