Out of the fog - again

In my seventh year of CAPi, I am once again emerging from the fog.  It is seventeen months since I began, for the second time, to attempt to climb out of the hideous hell-hole of M.S.

Cesare's struggle with his aching back made me realize that my neck does not have paralysing pain any more.   After months and months of not being able to move my head, then graduating to most-time, then part-time, pain, my neck is very close to normal.   That was my final area of great pain from the abxi going after the involved areas of my body's infection.

For about sixteen months, I have been taking my Rifampin during the night, after taking my other evening abxi around 9 PM.  This evening routine enabled me to sleep through part of the worst.  My AM abx has made me pretty sluggish, if not flat, many, if not most, days.  I have cut my flagyli from two to one (night) per day, and take one 200 mg caffeine per day (morning).  This week, with the State Fair coming, I have managed to be up and around working, albeit not at lightning speed, all day each day.  This is a big improvement.   The big change is that also this week, I have taken ALL my abx during the day and have still been working.  A few months before I stopped abx the first time, I had begun this routine.  I have not been able to do it for a year and a half.

As we have always said, this is a long, slow process.  Certainly it is.   My mind is definitely better, too.  Not as it used to be, but not the swamp it was five years ago.

From a numb right leg - like a post - I now have an almost normal leg that BENDS.  I now wonder what will happen if/when I am not taking five abx every day.  I will not push it and stop this time.  Caution is ever present in my mind, but there is no doubt that I have crossed a line. 

We have had "thermal hot water" for a couple of months, and also now have twenty-two solar panels in our front yard.  We live in the country.  We are not hooked up yet, having only finished the installation last Friday.  In our state, there is a federal rebate of 30% and a state rebate of 35% for every dollar invested in this important auxiliary power.  We are excited about it.  It is a "sell-all" program, meaning that we sell all electricity generated (for about 21 cents and buy all of ours back for about 7 cents per kilowatt hour).  Obviously, NC is pushing alternative power hard, because our state has to buy about 98% of the fuel to generate power.

Rica

Comments

For real wham, try adding

For real wham, try adding niacin">i (a gram of straight niacin with each Flagyli).

The flagyli was twice a day

The flagyli was twice a day for months, then switched to caffeine.  At some point, I stopped being hit very hard by twice a day flagyl.  Ultimately, last spring during kidding and later during show season, I ended up with one flagyl and one caffeine.  Now, show season is over and I can concentrate on the degree of "whaminess", and will do twice a day flagyl and try to increase caffeine to more than one.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I thought for myself too to

I thought for myself too to continue at least as long as i feel any effects. It´s hard that this can be so long, but what to do about that. It seems that there are not so many alternatives out there.

I ment 500 mg metroi daily instead of 1500 5 days a month. 

That you manage to work on all the abxi is an advanced level. Usually i fall asleep even if i really try to stay awake. 

Minoi 200 mg  / Azithro 250mg M W F / Amoxi 2000 mg / Metroi 5 days pulse   CFSi/ME Fibromyalgiai or whatever you like to call it.

NoahAfter four years and

Noah

After four years and four months, I thought I was as well as I was going to be and stopped.  For a couple of months all was wonderful, then I sank,and in a matter of weeks was almost at the bottom again.  My husband called Dr Stratton, and I was immediately on five antibiotics.  It was basically a second round of this struggle.

Now, after eighteen months, I am beyond where I was the first time.  As a matter of fact, this morning I took a flagyli AND a caffeine, in addition to all my regular abxi.  I am a little slower and a little staggery at times, but I did lots of work.

In other words, this is very definitely NOT my invention!  The picture seems to be emerging that those of us who have had this for a very long time will take a very long time to beat it back to a manageable level.

The words from Dr Stratton, when we last spoke to him, were to continue until I have no reaction to the abxi.  I will do that.  I really, really don't want to go there again.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica,this is a very very

Rica,

this is a very very long period of time! We all like to have things go faster. But good to here about your improvements. Especially with your legs!

Do i got it right, you take one dose of Metronidazolei (500mg) instead of a 5 days pulse? Is this your own invention? I thought about a similar aproach, because it would be easier to tolerate. Is this as effective as the regular way?

Minoi 200 mg  / Azithro 250mg M W F / Amoxi 2000 mg / Metroi 5 days pulse   CFSi/ME Fibromyalgiai or whatever you like to call it.

PaulIn doing my research, I

Paul

In doing my research, I never thought to inquire if there were any with solar power here on our doorstep, so to speak.  I would love to hear more about your amazing endeavors.

While here and very pertinent to the main subject, I hope that the person who has the seemingly never-ending bronchial infectionsi will read this:  mine of fifty-five years are entirely gone.  I am repeating this which is here buried in the comments somewhere, but both of us have had a cold in the last month, and for the first time in decades - maybe the second  (we may have had a cold a few years ago) - I did not develop a horrible chest infection that left me with a really bad, very painful cough that lasted for months.

Recently someone commented on having a chest and lungs like that, and I would really appreciate knowing that you saw this.

Thanks

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica, I have a couple of

Hi Rica,

I have a couple of off grid properties using solar. One one I have 3,200 watts of solar panels and 600 amp hr of batteries (at 48 volts) on the other I have 4,800 watts of panels and 900 amp hr @ 48 volts. Both also have 10 kw back up diesel generators so in the event of cloudy days or high use and an electrical outage, the generator can run intermittently (maybe 2 hours per day).

To bring this back to the purpose of the site a little... figuring out how to do all of this was a lot easier without a lot of Cpni causing brain fog ;)

- Paul

Rica, You have once again,

Rica, You have once again, given us a glimps of what the CAPi can do. The perseverance and courage to go the journey is all worth it in the end. I am glad to hear of all your improvements.

 

 

Thank you for your encouragement and friendship.

 

 

 

 

 

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

PaulSo exciting!  I don't

Paul

So exciting!  I don't think anyone will mind a small detour, in view of the education to be gained by all of us.    I f anyone chooses to reprimand us, please do - we are, after all, not THAT kind of energy site!

Thanks for that - this sell-all system is beneficial for both us and the electric company.  I presume you have batteries?

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

RicaI agree with Raven,

Rica

I agree with Raven, actually you and Sarah have been my inspiration from the beginning, now Raven is on my list too:)

Thank you so much for being here!

Diagnosed with MSi on March 2009, started CAPi on Jan 2010. Doxyi 200mg- Roxyi 300mg- NACi and all major supplementsi.

Rica, you are a model for

Rica, you are a model for all of us trying to push back this monster. Maybe someday there will be an easier and faster treatment. We are the early pioneers.

Great news about all the improvements!!

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Hi Rica, I am happy to hear

Hi Rica,

I am happy to hear about your progress on both fronts. I am finishing up my therapy and an off grid house with 16 x 200 watt solar panels, well water, and geothermal heat A/C. I realize that this thread is not about off grid living but if you have any questions, I will be happy to try and help.

- Paul

Rica, it's good of you to

Rica, it's good of you to remind the newbies and not-so newbies of how long this process may take. Indeed, we may find that it is a manageable but not as yet curable disease.

My neck didn't turn to the right for several years and then one day, amidst protocol, it did, but I never made the connection until now.

Good luck with your show this weekend (or am I confused?) and enjoy your thermal hot bath (with epsom salts) when you return. 

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Rica, it's good of you to

Rica, it's good of you to remind the newbies and not-so newbies of how long this process may take. Indeed, we may find that it is a manageable but not as yet curable disease.

My neck didn't turn to the right for several years and then one day, amidst protocol, it did, but I never made the connection until now.

Good luck with your show this weekend (or am I confused?) and enjoy your thermal hot bath (with epsom salts) when you return. 

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13