Cpnhelp.org

Kim can you confirm that you continue to take the rifampicin after two weeks, at the same time as you introduce Azithromycin, and eventually metronidazoleⁱ?   So that after 4 weeks you are taking three antibioticsⁱ on those 15 day pulses.

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

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

 Kim- I'll be really interested to see how you do ramping up to this. What a relief to see a doctor who really understands the process, and is working so actively to know more. Bless them all.

I know in conversation with Dr. Stratton that he considers Rifampin/Azith an adequate combo for preventing resistance, even through Rifampin is not a protein synthase inhibitor. I think the rationale included the fact that both act within the RB phase where replication is the issue (Rifampin on the conversion process from EBⁱ to RB, azith on replication in the RB phase). He also considers that there is suggestive evidence that flagylⁱ also has anti RB affect in addition to the anti-cryptic phase affect. It would be interesting to get some updated comment on this. 

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

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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

Dear Kim congratulations! I hope for you to find vast improvements in the new year and onward.  I am guessing that since you state you are already taking all the supplementsⁱ that you are already taking and will continue NACⁱ to kill eb also as a liver protectant.Please keep us up to date we are excited for you! Oh also I think ( maybe just my guess) that msⁱ may tolerate a ramp up more quickly like SARAH and more flagylⁱ sooner than ME/CFSⁱ patients.Barbara

NAC and glutathione push for years Lots of supplementsⁱ (all supplements in protocol)IV vitamins b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 MS flagyl 1day 500x2 11/23/2007

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NACⁱ and glutathione push for years all supplementsⁱ in protocol)IV vitaminsⁱ b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagylⁱ 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bidⁱ, doxybid 7/2008

Sodium pyruvate is used by cells as an easily accessible carbohydrate source. Additionally, it is involved with amino acid metabolism and initiates the Kreb's cycle

NACⁱ and glutathione push for years Lots of supplementsⁱ (all supplementsⁱ in protocol)IV vitamins b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 MSⁱ flagylⁱ 1day 500x2 11/23/2007

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NACⁱ and glutathione push for years all supplementsⁱ in protocol)IV vitaminsⁱ b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagylⁱ 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bidⁱ, doxybid 7/2008

Hi Jak, Yes I found that with a bit of googling.  Is is taken by mouth (PO) and is it  technically a supplement such as NACⁱ and D-Ribose and available from the health food store?

I could see how it could be supportive, more expensive but perhaps better than glucose or smarties.  I wonder how it cost compares to D-Ribose with is also an energy supporting supplement for those of us that crash, especially in the early months of treatment?   

Louise 

CFSⁱ/ME. CPnⁱ posititve, Bb positive.

Started CAPⁱ 6/24/07 Doxyⁱ & NAC

11/3/07 Rulid by Adventis 150mg BIDⁱ added toDoxy100mgBID,NAC600mgBID 11/22/07 #2 Tiniⁱ Full pulse 500mg BID

11/26/07Cholestyramine ttaken at bedtime (HS) for porphoria/Lipo Endotoxinⁱ sxs x 1 week after pulses.

01/01/08 #3 pulse in prgress day 3 today

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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

Hi Sharon, Take a look at her signature and you will find that she is already on it to the max! The Rifampin is covering that Doxyⁱ (second abxⁱ) space for Kim.  I believe that Sarah recently shared that after 6 months of Doxy she went to Rifampin.

This treatment protocol that Kim came back with was for an agressive MSⁱ situation I think.

I am most interested in learning more about the Sodium pyruvate addition.

Even the Flagylⁱ 15days on and 15 days off is still as a pulse allowing for cellular repair and other body clearing process to occur.

Again, Kim is a bit more pressed for time than those of us with the non-neurological presentations of the CPnⁱ occupation in our bodies, such as myself and you too I think with CFSⁱ/ME, FMSⁱ and other inflamatory conditions.

Louise

CFS/ME. CPn posititve, Bb positive.

Started CAPⁱ 6/24/07 Doxy & NACⁱ

11/3/07 Roxi 150mgBID added to Doxy100mgBID,NAC600mgBID

11/22/07 #2 Tiniⁱ Full pulse 500mg BID

11/26/07Cholestyramine at HS( bedtime) for porphoria/Lipo Endotoxinⁱ sxs x 1 week after pulses.

01/01/08 #3 Tinidiazole Pulse begun.

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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

Thanks Jak for all the Sodium Pyruvate info. I was surprised to see how many (me included) didn't know much about it. I admit that I learn as I go. I would like to forward your comments to others if ok.  Thanks ! Kim   

16 yrs RRMSⁱ - 2yrs SPMS. Copaxone, Avonex, Novantrone, Provigil, 5 gm NACⁱ, 5 gm VitC, 5000 IU VitD3, 2295 mg Curcumin, and other supplementsⁱ. EDSS 5.5 good days, 6.5 bad days.  Can't wait to lose brain fog and wear

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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

Hey Louise, How is the pulse treating You? I want to knoe EVERYTHING!!!!  Kim  

16 yrs RRMSⁱ - 2yrs SPMS. Copaxone, Avonex, Novantrone, Provigil, 5 gm NACⁱ, 5 gm VitC, 5000 IU VitD3, 2295 mg Curcumin, and other supplementsⁱ. EDSS 5.5 good days, 6.5 bad days.  Can't wait to lose brain fog and wear

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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

Kim, So far so good, however with Tiniⁱ it seems that the challenging events take a bit longer to manifest.  I started my pulses late at my 5th month of treatment, that is one difference.

My first pulse was one pill early in November and I had some neck muscle tenderness maybe.

Second pulse was started the evening of Thanksgiving and it was on day 9 that I ran a fever of 102 after a burst of energy that allowed me to attend to business physically that I had not had strength for either mentally or emotionally for all to long.  It lasted that night and was on the way down the next morning and completely gone by the following day.  No other symptoms.  May have had to do with my coexisting Bb.  (Borrelia AKA Lyme)

And then I did start the Cholystyramine on day 5 of that pulse to try and capture any fat soluable porphoria or lipophilic endotoxinsⁱ from my several bacterial pathogens, that was causing fogging etc. And that did improve the clarity of my thoughts and perhaps emotions.

And MS is not my diagnosis so although I am happy to share with you of course, my roadmap may not line up as easily with your's due to that difference.  The good thing for you is that there are more past posts of folks with MS who were regular than those with CFSⁱ etc. so they should be easy to find.  Perhaps some will post and direct you to their wonderfully detailed accounts.  If reading is something that is helpful to you. 

There is a wealth of blogs here of folks with very detailed accounts of their Pulses who do have MS diagnosis. 

The concepts cover all the catigories of diagnosis,yet the challenges and cautions are a bit taylored to the expression of the CPnⁱ pathogen in each of our bodies.    One trick is to read people signature and them click on the user name at the top of the post it will take you to their information.  From there you can find their blogs and their posts.  Click around and you will see what I am trying to tell you. 

So once I am at say day 12 or 15 of this pulse I will have a better take on the overview of my current pulse.  Still that neck muscle stuff is back but at a rather low level that is just bothersome at this point.

CFS/ME.CPn positive.Bb positive.

6/14/07WheldonCAPstartedDoxy&NACⁱ.

11/3/07 Roxi150mgBIDadded.

11/22/07#2Pulse Tindamax(Fasigyn)(Tinidazole)500mg BIDx5d.

11/26/07Cholystyramine@HourOfSleepforBrainfog,memory,irriability X7daysPostPulse.

01/01/08#3Pulse

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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

 The pyruvate is something a patient of Dr. Stratton found useful as it is an ATP booster. Seems to help, probably like the ribose, in preventing porphyriaⁱ from exercise or other kinds of induced ATP depletion.

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

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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

Bodybuilders use pyruvate (sodium pyruvate or calcium pyruvate) for weight loss.   This place http://www.bodybuilding.com/store/pyruvate.html sells it in strengths ranging from 1,000 mg to 2,000 mg per tablet with label directions saying to take either 1 or 2 tablets per day.  Even so, there are accounts on the internet of people taking 20 or 30 grams (not a typo) per day in order to get the desired weight loss benefit.   

CAPⁱ for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithⁱ (3 x week). Third pulse metronidazoleⁱ completed 12/27/2007.

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CAPⁱ for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazoleⁱ + INHⁱ completed 3/12/2009.  Intermittent treatment thereafter until 8/7/2009.  

When Ella first started the CAPⁱ, she found it very difficult to tolerate Azithromycin and before we switched to roxythromycin, we tried Calcium pyruvate as an antiporphiric measure, but it did not make any noticeable difference to her ability to tolerate the Azi.

Michèle (UK) GFAⁱ: Wheldon CAP 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

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

K&K

more great news!  I look forward to seeing your results, particularly the flagylⁱ 15 on & off.  I did have a rash, 80% of my body with hot swelling in my face to look like a pumpkin head.  I iced my face for 3 days!

I was afraid to call the doc at the time about it, 1/ I didn't want to go anywhere & 2/ more drugs & 3/ changes to the protocol.  If it happens again, I am going to get in there for prednisone or the like.

Keep in touch when you can!

CFIDSⁱ/ME 25yrs, FMSⁱ, IBSⁱ, EBVⁱ, Cpnⁱ, (insomnia - melatoninⁱ, 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

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CFIDSⁱ/ME, FMSⁱ, MCS, IBSⁱ, EBVⁱ, CMV, Cpnⁱ, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsⁱ+Sea Kelp,Iodorol, Inositol, Chitosan, L lysine Pulse#25 01-27-10 1gm Flagylⁱ/day-5 days

 Ruthless, just curious when you started having side effects from scrips. I suppose pumpkin head will have to make for a heck of a Halloween trick!

Ok, all kidding aside,Dr Shriram warned me about herx and to notify him right away so please the next time this happens dont suffer any longer than you have too.  I only had a day on the protocol and can't wait to forge ahead!    

16 yrs RRMSⁱ - 2yrs SPMS. Copaxone, Avonex, Novantrone, Provigil, 5 gm NACⁱ, 5 gm VitC, 5000 IU VitD3, 2295 mg Curcumin, and other supplementsⁱ. EDSS 5.5 good days, 6.5 bad days.  Can't wait to lose brain fog and wear

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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

Louise , I appreciate the update as I am learning how to follow everyone and use this site to the fullest. Best of luck   

16 yrs RRMSⁱ - 2yrs SPMS. Copaxone, Avonex, Novantrone, Provigil, 5 gm NACⁱ, 5 gm VitC, 5000 IU VitD3, 2295 mg Curcumin, and other supplementsⁱ. EDSS 5.5 good days, 6.5 bad days.  Can't wait to lose brain fog and wear

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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

Michele, I will be taking all 3 simultaniously then after the pulse, I go back to rif and Azith again. hope that helps answer your question ,sorry so late.  

16 yrs RRMSⁱ - 2yrs SPMS. Copaxone, Avonex, Novantrone, Provigil, 5 gm NACⁱ, 5 gm VitC, 5000 IU VitD3, 2295 mg Curcumin, and other supplementsⁱ. EDSS 5.5 good days, 6.5 bad days.  Can't wait to lose brain fog and wear

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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

Michele, I will be taking all 3 simultaniously then after the pulse, I go back to rif and Azith again. hope that helps answer your question ,sorry so late.  

16 yrs RRMSⁱ - 2yrs SPMS. Copaxone, Avonex, Novantrone, Provigil, 5 gm NACⁱ, 5 gm VitC, 5000 IU VitD3, 2295 mg Curcumin, and other supplementsⁱ. EDSS 5.5 good days, 6.5 bad days.  Can't wait to lose brain fog and wear

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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

Thanks Kim. I thought that is what was happening but wanted to be sure, in case others would interpret it differently.  

Michèle (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

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

Even though I haven't been diagnosed with MSⁱ; I have had many neurological symptoms come & go over the years, most notably the past 5. 

My central nervous system on 3 occasions has imploded leaving me in horrific writhing pain via every nerve ending in my body.  I have been ambulanced 2 of those times for pain management (I have a high tolerance to pain meds).I think it is probably due to the CPnⁱ, but just wanted to point out that patients with CFIDSⁱ can also have neuro symptoms.

Peace

CFIDSⁱ/ME 25yrs, FMSⁱ, IBSⁱ, EBVⁱ, Cpn, (insomnia - melatoninⁱ, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACⁱ 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

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CFIDSⁱ/ME, FMSⁱ, MCS, IBSⁱ, EBVⁱ, CMV, Cpnⁱ, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsⁱ+Sea Kelp,Iodorol, Inositol, Chitosan, L lysine Pulse#25 01-27-10 1gm Flagylⁱ/day-5 days