Cpnhelp.org

Its great to hear your news, even if your good times have come to a temporary end.   Knowing that the abilities are still there is such a comfort...

We will be waiting with baited breath to see what happens next.

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.

I agree with Michele but I am a bit concerned about the idea of a 15 day first pulse. Flagylⁱ can really knock you flat and it is usually wise to begin with a very short pulse. Generally, you work up to a 5-day pulse followed by 3 non-pulse weeks until the next one. The longer the pulse, the longer the recovery. Anyway, if it's at all like my 2nd pulse, by the 3rd day you will be too weak to lift the pill to your mouth. Perhaps you should rethink the 15 day plan. Or was 15 just a typo?

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.

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PPMSⁱ-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPⁱ 3/2/07 - Now (1/10) doing 100 doxyⁱ; 125

Dear Kim, in my opinion if you can regain the use of your facilities  means you can get better for good. But good god doesn't it feel great to not have to hold yourself from fear of peeing all over!!.Believe or not my urge to urinate  disappeared fully at about 2 1/2 to 3 months and it is my one improvement that has held (so far) . of course it was the most recently added disabilty too. Quite aFew times i loosen up and walk about for a couple days happily and then bam now iam so tight i can barely walk my feet are all swollen and iritated numbish and so is my outside of my right hand. Again i am pretty sure this will disapear in the next couple days when i get my period. So since i am not working today i am laying in bed feet elevated and napping so stiff.S Kim i am very interested in the riampin and longer flagylⁱ ugage also how did you decide on 5g of nacⁱ? Barbara  NAC 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 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

Kim, I have to agree, if you did intend to say 15 days it sounds like too much. I'm discovering that after my second pulse, not at the full dosage, I am still needing almost the full three weeks to clear out my system.  If it is possible, I would think carefully about the length and dosage for your first pulse.  Be patient, I'm seeing signs of changes and I've only done two.  Hang in there, it will get better, just keep on going round.

Robert - MSⁱ for 16yrs. CAPⁱ since Jul 07, NACⁱ 2400mg, Doxyⁱ 200mg daily, Azith 250 mg MWF, 2nd pulse 6.1.08.

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Robert - MSⁱ for 16yrs. CAPⁱ since Jul 07, NACⁱ 2400mg, Doxyⁱ 200mg daily, Azith 250 mg MWF, Flagylⁱ 25th pulse.

If I remember rightly, that was what Dr Sririam prescribed for her, two weeks of Rif alone, then add two weeks of Azi and then 15 days on 15 days off Flagyl.   I thought it was rather aggressive,  but I reckon they must know what they are doing...

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.

Kim,

Taking the "one trick pony" flagylⁱ for 15 days could be the perscription for getting bucked off that mighty stead.  There is a probability that you will be slammed for days & days & days & days after killing soooo many critters (CPnⁱ)  Remember the secondary porphyriaⁱ, toxins take time to leave our bodies & in the meantime; if you are cold now, you may be cold, frozdicated & flagylated.

expect the unexpected & maybe, take less days, recover & then add another day or so as you go!

Blessings

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

Nancy, et al - Don't worry; as I recall, Kim's 15 day flagylⁱ pulse is directed straight from the horse's mouth, Vanderbilt University clinic, at that infamous appointment in December. We just have to trust the doc on this one, and I'm sure if it's unmanageable, she's got permission to back off.

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

Kim, I can't say how happy I am to hear your news. Even though the improvements may wax and wane til they take hold, these glimpses of normalcy will carry you through the low moments. SO glad you bought the E ticket and got on the best ride in the world! Yay to you, too, Ken! I know how hard this was on you and now the payoff begins.

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

Jak,swollen feet are a bit of a concern but how will I know when to start the charcoal? I can tell ya me toes look like vienna sausages until my legs get working. Ken will comment on the nacⁱ later.  Kim

16yrs RRMSⁱ-2yrs SPMS. Rifampin, Azithromycin, Copaxone, Avonex, Novantrone, Provigil, 5gm NAC, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wait to lose brain fog & wear real girl shoes.

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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

Art you heard it correct alright. 15 on and 15 off of flagylⁱ. I will see how it goes day to day but michele was right that this came from the higher authority at Vanderbilt. I will be the first to cry foul if need be. Thanks! Kim  

 

 

 

 

 

16yrs RRMSⁱ-2yrs SPMS. Rifampin, Azithromycin, Copaxone, Avonex, Novantrone, Provigil, 5gm NACⁱ, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wait to lose brain fog & wear real girl shoes.

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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

 ruthless are you taking anything besides charcoal for the porphyriaⁱ?  How have you been?  

 

 

16yrs RRMSⁱ-2yrs SPMS. Rifampin, Azithromycin, Copaxone, Avonex, Novantrone, Provigil, 5gm NACⁱ, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wait to lose brain fog & wear real girl shoes.

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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

Mack  hats off to you! You have quite a memory for having gone thru the memory guess game we all suffer from! I will do my best to tolerate Dr. Sriram's orders but I can always call the office if I can't tolerate well. 1-2-3 lets roll the dice! Kim  

 

16yrs RRMSⁱ-2yrs SPMS. Rifampin, Azithromycin, Copaxone, Avonex, Novantrone, Provigil, 5gm NACⁱ, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wait to lose brain fog & wear real girl shoes.

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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

Hi Kim,

I take glucose, dextrose - Smartie Candy roll my husband found for me today!!! as well & Emergen-c, calcium ascorbate, ...as much of all of them as it takes to level things off, kind of what doesn't work I try another; sort of thing!

I have been going along.  I discovered the other night after we went out with the neighbours here in AZ for 1/2 price happy hour; I had 2 lime tequilla slushy margaritas how cold I can get AGAIN.  Alcohol IS BAD & does cause porphyriaⁱ, LOL

My husband & mom leave me here for home on Feb 3rd so I will embark on pulse #6 & only 375 mg 1X day for 5 days.  God speed!!!  It will be my biggest pulse & I think I have all the remedies in order & waiting.

Sorry Kim, you should follow the docs orders!  It appears those that have MSⁱ (I forgot) don't have quite the horrific die off symptoms that us ME'ers get, one of the differences in our illnesses.  Who knows, one day we may actually know the reason!

PULSE AWAY,  God Speed

CFIDSⁱ/ME 25yrs, FMSⁱ, IBSⁱ, EBVⁱ, Cpnⁱ, (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

Jak,

I'm not sure if this site is ok with my posting links to other sites, but no one has told me not to yet. Just as an explanation, I try to post my stuff at TIMS and stay out of Kimmie's way here - she's rather independent minded and I love to see her thoughts.

About NACⁱ then - let's see if I can make a link the way I do at TIMS, www.thisisms.com/article188.html.

I called Dr. Schipper because I couldn't find the results. He had not yet published them but said that safety was demonstrated and that they also had some positive MRI results. I've written about this in my thread at www.thisisms.com/ftopict-4375.html.

Ok, How do you insert a link without making it say www?

Ken

 

 

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In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

Thanks, Kim. That was one of the scary bits for me. I've always remembered details explicitly: where I saw a particular word on which facing page of a book, precise verbiage in a conversation, dates and times of appointments, events, etc, both before and after they occurred. Suddenly, I couldn't even recall more than one number at a time of a phone number I was dialing. Creepy. It came back very quickly with abxⁱ, though. I only wish I could remember the important things, like names. I'd kind of hoped that would improve with abxⁱ, like so many other things have, but alas... I think perhaps my difficulty recalling new names is more a genetic deficiency than a cpnⁱ-induced one!

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

  Dear kim and ken,  yes the vienna sausage toe thing is lousy. last night was the last night of the third premenstrual week hormones were at their highest pre drop(THE HORMONES DROP AND YOU START MENSES) i actually had the urge to pee for couple hours. Now I am loosened up and significantly more mobile dropped hormones more mobile. Iwill be the.most mobile for the next week duration drops during menses . THIS MAY SOUND GOOFY Please since your period started again note if your stiffness and mobility changes during different times of month. today I will get lots done. I will also work out on the treadmill. I couldn't have yesterday.  As the hormones dropped so did the inflamation and my toes are deflating already. i read your attachments quite interesting .They also have  found nacⁱ reduces inflammationⁱ in lungs in high doses for cfibrosis and aids so I am upping my dosage too.  You like lori are following the vanderbuilt prscript and Ii will be watching like a hawk. Good luck keep us abreast of all updates.  I look forward to hearing your contined improvements Barbara

NAC 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

 notasperfect... anyone is welcome to post links as long as they are not commercial. ThisIsMS is a community that I and we owe a lot to, as it was through them that I found Sarah Longlands-Wheldon and David Wheldonⁱ, and eventually Dr. Stratton, etc., etc.. It is particularly important to me that MS CAPⁱ users don't spend all their time here at Cpnhelp (although we love them dearly!), but also co-post on ThisIsMS so people looking for alternatives can hear their experience.

CAP for Cpn 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

So .........

Before I get started, I want to say that I've sorted out 2 burning questions with Dr. Sriram.

1) Kim is to be on a 7 day Flagylⁱ pulse that may be increased to 15 days in the future as tolerated.

B) Kim is to start taking Calcium Pyruvate 30 minutes before Azithromycin in week 9 of her protocol.  Originally we were told sodium pyruvate, but we have been cleared for calcium pyruvate as a substitute.  1.5 grms. 

Kim is now completing day 5 of her first Flagyl pulse.  It's not nearly as disorienting at Novantrone, but then again, I don't know what day 6 and 7 will bring.  With Novantrone, Kim would go into a 4 day decline like getting more and more drunk and sleep deprived.  Completely unable to drive and then she'd start coming back to life around day 5.

Flagyl is seemingly kinder, but slower to catch on, like going from one beer and a cold to two beers and a bad cold to 4 beers and a severe cold then to 6 beers and an nesty flu.  So we're in day 5 and Kim's sleeping a lot very sluggish, but she came to basketball practice tonight and watched American Idol.

Questions:

1) Is there something that's good to take for the stomach ache, crampy feeling she has?

2) Is there something that can be done to help Kim feel warmer?

3) Diarreha

4) What does "tolerate" mean?  I suppose this varies from person to person, but what should Kim be looking for in determining how she is "tolerating" the ABXⁱ? 

Kim's taking 1.5gms of Charcoal in the middle of the night right now.   She's taking the Flagyl and Azith with food.  No Alchohol.  She's drinking ginger ale to sooth her stomach.  She still has bladder control and ........

I'm giving up excessive sugar for lent.  Ken

 

 

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In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

"Tolerate" means "no diarrhea". No, not literally, but 'tolerating' abxⁱ means no debilitating effects. (I'm not saying NO effect, lest someone come along and say improvement in symptoms is an effect.) In other words, it's expected one might not tolerate the abxⁱ well at first. They're not natural in your body, initial cpnⁱ-kill is a real whack to the body's systems and the toxins and dead carcasses of the cpn are floating around in the mix, not to mention you're still trying to find the proper balance of abx, probiotics, charcoal and whatever else she's ingesting. When she doesn't feel much effect from taking abx, that's tolerance. Lots of us experienced diarrhea or intestinal distress at the beginning. Abx going through your digestive tract is like the cowcatcher on a train; a lot is being affected and pushed through there. My experience for a week or maybe two was kind of like having eaten hot, spicy food, except the burning, acidic output went on for days, rather than one time. I drank a lot of water and bought my first and only package of aloe vera Tucks to soothe my poor derriere. It just sort of evaporated on its own as my body acclimated to the abx and the die-off. I drank a lot of tea, too, which seemed to help.

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

When we had diarrhea as children, my mother used to make us drink a small glass of the cooled water of boiled rice.   Not very pleasant but very effective.   Chlorella is also good for stabilising the gut.   In our experience this diarrhea did not last very long, so you may not have to do anything permanent about it.   After the initial event when I first started ABXⁱ which lasted three or four days, I have had the occasional bout of it that lasted a couple of days.   But only with flagyl.  

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.

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