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It ain't over til Sam plays it again

Submitted by katman on Wed, 2009-05-27 10:55.

Jan 11, 2009 was a day of celebration followed by several months of very near (old) normalcy. I had done four years and four months of protocol and finished with weeks of the supreme test. Confidence and well-being reigned.

Then - in the way known to each of us - the stealthy creeping began - a little fatigue (it was the middle of kidding season), a little functional deficiency (it was the middle of kidding season and LOTS of hard work), some brain fog and lots of fatigue and foot drag (it was the middle of kidding season - though approaching the end - lots of hard work, long hours, and clipping and packing for the show).

Something is going on. We veterans can fill in the blanks - I AM NOT DONE! My protocol now is from the original horse and includes all the supplementsi: I am for six months on basically the original. It is Doxycycline, 100 mg bidi; Rifampin, 300 mg bidi; Amoxicillini, 500 mg bid; Azithromycin, 250 mg MWF; flagyli 500 mg bid.

Yesterday, several days after beginning the whole thing, I spent the day as a zombie - the culmination of several days of almost-zombiehood. Today is much, much better. I compared it to a trash crew strike: the trash accumulated in the streets, the strike ended, the crew came yesterday, and now there is only the usual amount. BUT - with the environment being improved and recycling coming into full swing, there will soon be NO trash being deposited - at least that is the six month plan of total extermination of these incredibly crafty creatures. Where were they hiding? They wasted no time, the few that were left, in setting up their little factories and spewing out their poison. I could feel it coming - we here learn to listen to our bodies - in the end that will save us.

For the last week, I was afraid the whole six months was going to be like the first few days; now I realize I have not regressed four and a half years but caught this very, very early. Already I am back physically and mentally to where I was in January.  I can do this.

Rica

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

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Go Rica, Go!  Go Rica Go! 

Submitted by farandwide on Wed, 2009-05-27 13:44.
Go Rica, Go!  Go Rica Go!  Kick them critters right where it hurts! :-) I have no idea where they were hiding but regardless of that, they aren't hiding anymore!

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best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08. Added

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Rica, good luck in killing

Submitted by Maria on Wed, 2009-05-27 15:32.

Rica, good luck in killing all cpni once and for all. You can do it.

 I wish you all the best and a great summer with no more cpn!!

, Maria 

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Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat

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As ever your story gives us

Submitted by Michèle on Wed, 2009-05-27 15:51.
As ever your story gives us a blue print for progress in the treatment.   I do hope you can get rid of these last few critters and get back to what you had achieved a few months ago.   I am rooting for you.

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

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Rica, lead the way girl, we

Submitted by Kimscupoftea on Wed, 2009-05-27 20:30.
Rica, lead the way girl, we are all behind you!

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RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyli Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

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Rica, So sorry they crept

Submitted by wiggy on Wed, 2009-05-27 21:07.
Rica, So sorry they crept back but glad to hear you got them! Hang in there!

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On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

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Another zombie day. I

Submitted by katman on Thu, 2009-05-28 10:36.

Another zombie day. I believe this is a result of all abxi together. Both times it has been the day after Azithromycin - last week I felt so rotten I couldn't have differentiated. Today is not as bad as two days ago so maybe it will continue to lessen. We may need to increase our "supreme test" to this very strong protocol to enxure complete success for those of us who have been incubating this infection for so many decades. I could not have done this at the very beginning.

Rica

 

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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

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Hey, I hope you feel better

Submitted by clammed_up on Thu, 2009-05-28 09:16.

Hey, I hope you feel better and that this is temporary and that you get the miracle eventually. Have ypu considered taking a few heavy few pulses of a quinolone before tapering right off?

 

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MSi TMJ trigeminal neuralgia cfsi neutropenia cystitis nephritis optc-neuritis sinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI's

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Rica, Sorry to hear about

Submitted by Louise on Thu, 2009-05-28 09:44.

Rica, Sorry to hear about your temporary downturn of events.  Can I ask how many rounds of intermittent you took after January if any?  I was not clear back then if you were planning to go intermittent but it sounded if you were taking a full stop after your Rifampin months.   Have you considered a short course of cholestyramine for the potential to clear the zombie effect?   It has generally worked for me to clear my bouts of brainfog.  Louise

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6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tinii, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin

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Louise,I did two series of

Submitted by katman on Thu, 2009-05-28 10:41.

Louise,

I did two series of intermittent, and thought I was successful.  Now, I look back and think I wasn't paying close attention.  I thought I  was clear, maybe a little tired and logy, but now realize it was more than that.

Rica 

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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

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Rica, I can't help wondering

Submitted by Sarah on Thu, 2009-05-28 12:37.

Rica, I can't help wondering how much of this is due to excess of kidding, since it is the first time in donkey's years that you have done it without the help of abxi.  All the same, it is better to be safe than sorry and six months will be gone in a flash..............Sarah  

An Itinerary in Light and Shadow

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but most days I could pass for as good as new.

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Rica, I'm sure that your

Submitted by Michèle on Fri, 2009-05-29 01:04.
Rica, I'm sure that your husband and your doctors have reviewed all possibilities, but all the same it may be worth considering Ella's experience.   A couple of months after stopping the protocol she was plagued with constant and recurring bladder infectionsi and each one made her feel as though she was relapsing.   In hindsight it may have been some deep seated bug that the protocol kept at bay but got free reign when she stopped doing it, as it was a bladder infection that would not go away that precipitated her devastating relapse.   
Just a thought.

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

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Another thing to try, for

Submitted by Norman Yarvin on Sat, 2009-05-30 12:32.
Another thing to try, for these final stages of the protocol, might be niacini or INHi: an agent active against Cpni infecting macrophages.
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Niacini? How does niacin

Submitted by clammed_up on Sat, 2009-05-30 15:05.
Niacini? How does niacin work against CPNi ?

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MSi TMJ trigeminal neuralgia cfsi neutropenia cystitis nephritis optc-neuritis sinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI's

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I can't find my old notes

Submitted by Janice C on Sat, 2009-05-30 16:53.
I can't find my old notes from Dr. P, but as I remember, niacini kills cpni at the dosage of 2500 mg. I turn red as a beet after I take it. This is not time released niacin. I think regular niacin is the one that works, and it's easier on the liver. If someone has more up to date or accurate info, please jump in.

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minocycline, azithromycine, metronidazolei 2007-2009, infrared sauna, chelation for lead poisoning, ursodiol, nitroglycerine patches for muscle pain, insomnia, interstitial cystitisi, sinus, dry eyes, stiff neck, veins, thyroid, TMJ.

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We don't know the 'how' of

Submitted by Norman Yarvin on Sat, 2009-05-30 19:38.
We don't know the 'how' of it, but niacini is one of the things Stratton has tested against Cpni, and found to be effective. In particular, other antibioticsi have trouble clearing Cpn from white blood cells (monocytes and macrophages), but niacin is effective at it. This is not a big surprise, since niacin is a proven agent against atherosclerosis, in which Cpn is strongly implicated.

Yes, extended release niacin is to be avoided, as it's much harder on the liver, and probably not as hard on the Cpn.

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Isoniazid (INHi) is the

Submitted by farandwide on Sat, 2009-05-30 19:57.
Isoniazid (INHi) is the antibiotic that was found effective at clearing Cpni from white blood cells.  I was on it continuously last year for 2 months.  I got to the point where it was too much so I backed off on it.  It might be worth doing again, perhaps combined with Flagyli pulses.  However, if Niacini is as effective, it certainly will be an option as well.

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best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08. Added

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I find it so amazing when

Submitted by clammed_up on Sun, 2009-05-31 00:54.
I find it so amazing when the things Ive discovered on my own through trial and error are actually the same as the things that Dr s has concluded through his ongoing research. I knew niacini worked to make me feel better but i just figured it was because it thinned my blood and allowed more abxi to get to necrotic tissue sites. I didnt know it actually kills cpni in wbc's! And ofcourse this makes so much sense since im deficient in neutrophils, well at least i was anayway:) This is good news because i really respond to niacin. I hope someone can find the literature.

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MSi TMJ trigeminal neuralgia cfsi neutropenia cystitis nephritis optc-neuritis sinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI's

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Rica Are and always will be

Submitted by goldenbrooke on Wed, 2009-06-24 21:36.

Rica

 Are and always will be one of my Dearest Friends, if anyone can beat this and keep up the fight I Know it is YOU !!!!!!!

As always Ed

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