Soap Opera Update

Hi, everyone!  Merry Christmas Eve!  I know I've been remiss, so here's the edited version of my saga. 

Nearly at fifteen months and the only real effect of flagyl pulses is a short temper.  For that reason, I am postponing this month's pulse til after the new year.  I don't want to be remembered as the Grinch this year. Wink

I've been absent from the board more than I'd like, as I moved into my childhood home on 02 October and it has drained me of time and money since day one.  The house has been jacked up two inches  in the center, new wiring has been pulled, light fixtures have been hauled to and from the refinishers/platers, the rear brick wall has been demolished and rebuilt and the rear yard (about sixty by two hundred feet) has been cleared of twenty years' growth of grapevine and weed trees and trash.  As I type this, two contractors are still here (near midnight) rebuilding my only existing bathroom  One cat (feral and untouchable) is loose in the house as this is being done and he howls pitifully when the saw blades whine.  (Jim, I'll see your 'before' photos and I'll raise you.  I have no kitchen and won't have one until March, if all goes on schedule.)

But know I am not complaining, not even a little bit!  Everyone, understand please; this would not have been possible before abx.  In August 2005, I was physically drained and debilitated when I climbed the stairs here but once a day.  I was facing giving up the dream of restoring my childhood home, a late-Victorian gem.  Today, I have been up and down from basement to attic at least twenty times, hauling pipe and lifting lumber and climbing ladders, measuring, this after working a full day at my job. (Be careful what you wish for, children!)  More later, but work is going great here and so am I.  By the way, my 'real' job is a minimum fifty hours a week, as well.  Oh, and no 'wobblies'; I've worn high heels to two Christmas parties without mishap.

Good holidays to all, whatever holidays you may be celebrating.  I love this time of year when everyone is just a bit kinder to others.  My heart is with all of you, though my time is so limited at the moment.  I'll be back soon,  Mac K. 

 

 

Fantastic to hear your progress Mac, I was not worried when we had not heard from you for a while, because I knew you were busy, but there is nothing like good news to make life more manageable.   Flagyl is doing more than making you short tempered is appears.

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Wow!  I knew you had the house renovation going on, but your very rare appearances here had me thinking there might be something else too...like maybe a new man in your life.  Sounds like you might have dozens of new men in your life:  tradesmen.  Is there perhaps a special plumber or electrician or drywaller or mason or carpenter or painter or tile contractor among them?  Men whose labor produces tangible and lasting works go through their lives with an easy sense of accomplishment and rightness with the world.  Well...am I right?  Has Mr. Right arrived wearing a tool belt?

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Cpn indicated by reactions; Mpn, EBV, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDN.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Oh, Mac, still no bathroom?  Mind you, when we were in the very early stages of restoring this mid-Victorian thing, we would traipse down the road to DW's mother's house, not only to shower but to eat as well, since what is now our kitchen was then a most disgusting shocking-pink and purple bedroom of one of the then flats.  Are you having a break, both from all this and from work for a few days?  Go easy on the high heels, though: they aren't really good for you whether you have MS or not.  I stick at 1 3/4 inch wedges........Sarah 

Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 No bathroom!  Still!  Argghh!  But, with luck, this morning he will complete last night's strong start on running the water supply.  There won't be tile, but there will be necessities, like a sink, for pity's sake.  :-)     I'm at work, so I've no idea what's going on at the house right now. 

Joyce, no luck in that area.  The contractors are all happily married and they want me only for my money!  ;-)   (Oh, and my ability to run errands, bring tools up and down the stairs and occasionally supply take-out food...)   Last night, I was holding up the toilet while he was redrilling the hole in the floor for it.  I'm glad I'm ABLE to do that, but I was sort of questioning my sanity while I was holding it two feet above the floor for him...

I want to know how Michele's hair is doing, how far Sarah is currently trekking, how Marie's aptly named self-tests are going, what Ice's IQ tests are reflecting, what Guner is up to, and on and on.  It will take hours to read a month of posts here, but I will, soon.  All of you are constantly on my mind and such a huge part of my life.  Jim thank you for giving us a soft and safe place to land! 

On Wheldon protocol since 06 Oct 2005 for MS and doing swimmingly!  YAY!

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

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

Hi Mack! It's good to hear of your project's progress! Fabulous! I wish you a funcitoning bath for Christmas! marie On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplements. "Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Mac- You are very welcome. You are one of the original "old-timers" who was rooting for me when I was just starting the CAP, so I owe you big time. Little did I know how important this little community would become to supporting us all through this treatment process.

My great thanks to Sarah for staying with us all when, by all rights, she would be justified in leaving this all behind and getting on with other things.  But as things have developed I think she stays with us for the same reason, in addition to her moral fiber (non-dietary that is), we all do: it's personal! Many of us have come to know each other well enough despite our virtual connection, to  feel real, human concern about how each other is doing, how their house projects are going, what art they are delving into, and so on.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60% recovery. Ohio,

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Oh how wonderful!  And I am soo jealous.  Posts like these keep me coming back.  I would LOVE to one day run up and down the stairs...just to do the laundry!  Congratulations to you!  I can't wait until I've done this over a year.  It seems like the second year is where all of the progress is made.  The first year is just plain hard.

Enjoy making your home!

Kristin

David and Kristin, Married Forever, on CAP for FM and CFS with Dr. P. Sacramento, CA

David and Kristin, Married Forever, on CAP for FM and CFS with Dr. P. Sacramento, CA

Mac, so good to hear you are leading a normal life! isn't that remarkable?? I know remodeling is tough. We remodeled a 1911 Craftsman bungalow and 2 rear buildings in the late '80s. Now it's on to a much neglected '70s house. I am so happy for your progress!!! It is a gift to you who never gave up and was relentless in seeking the right treatment.

Wishing you the happiest New Year ahead and hope you can catch the poor kitty soon!

Raven 

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

Mackintosh,

Sounds like you are doing great - hope you get that bathroom soon and Happy Holidays! 

 

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

No heat today!  There is obviously no rest for the wicked Image removed., as the heat went out on Christmas Eve night.  But, you know, I have my health back and I have it a lot better than most in the world.  Good wishes to all, and bless the heating guy who came here at one in the afternoon on Christmas DAY!

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

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

Mackintosh, and all here

I would like to wish you Happy Holidays!

Good luck in New Year.
 

Jan  CR /Prague; On CAPs:12/01/2005; 20 years CFS, then fibromyalgia; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness;  from 2003 - v.s. lumbosacral meningoradiculitis, hypertension.  December 06 - big improvement

On CAPs:12/01/2005 till March 2013; 20 years CFS,IBS, fibromyalgia; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension... 

As promised, we talk here about the good, the bad and the ugly.   Through the past months, I've revisited many of my MS symptoms for an hour or so or a day or two.  I've taken my own advice to heart and mollified myself with the rationale I'm passing back along the road that brought me here.  Thankfully, the foot burn was  just a couple of days.  The weakness in the left hand was a fleeting thing once, maybe twice.  The tiny numbness on the left side of my mouth was seconds in duration, rather than several hours, as had happened a couple of years ago.  Not bad.  Seemed I was traveling trhough the disease in reverse and in a brief, accelerated trip. 

Here's the test:  my first symptoms, though I didn't realize they were 'symptoms' at the time, were my low body temp and my beet red face after exertion.  Well, the beet red face and the overwhelming need for a nap in midafternoon have returned the past two days.  I SO do not need this right  now.  There is something critical going on at work and I have to be at one hundred percent this week.  Rats! 

But, as I say, this is the test.  If this passes quickly, rather than hanging on for ten years (as it began), I guess the theory is sound.  Will keep you all apprised....   the very red face eliminates the need for blusher, though.

 

Wheldon protocol for MS since 06 Oct 2005.

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

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

So I suppose we could compare your experience to the trajectory of a ball thrown up into the air, with the qualification that it comes down a lot faster than it went up.   That is very helpful to my understanding ot the process of recovery.   I will think on that and see if I can find similarities in mine and Ella's experience.

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I think my ball did at first come down very quickly but then it took to bumping along the ground  -  the reoccurrence of symptoms, but always moving along the ground in the right direction.  One thing I have noticed, Mac, is that the biggest bumps always occur when you least want them to, so the red face was almost bound to happen this week.  Whenever I am consciously trying to make a good impression on someone, my walking goes caput.  Then as soon as that person has gone, I recover.  In my case this is to do with the people who scoff at a cure for MS and think that I am deluding myself, because all they know is that it is a relapsing remitting disease and I am going through a remission.  I did get a lupus butterfly rash across my nose and cheeks once, when I don't think I was trying to impress anyone.  It lasted a couple of weeks that time and was probably due to endotoxin dumping, a ghost of something that might have been........Sarah 

An Itinerary in Light and Shadow.Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 Exactly!  Of course, a brief visit with each symptom is nothing, in the grand scheme of things.  As you say, Sarah, a ghost of what might have been, when things could and WOULD have been so much worse.  I am under extreme stress right now, so it was bound to trigger something.  I've been expecting it through the last weeks, with contractors coming through my life incessantly, but all went well until now.  I think that's a strong testament to my recovery, in and of itself.   If I can get through this destruction/construction without a real relapse, I'd say I'm more than halfway home.  Fifteen months of abx and counting...

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

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

Hmm, that's why we left this house just somewhat more than half finished when we both started treatment and then recovery and then trying to help other people doing the same thing.  We might have to bang up and down three flights of bare wooden stairs, brushing against bare plaster walls, but we haven't had either the stress of contractors or of trying to finish it ourselves, which is the better option since all the building work is done, only the decorating left and we both do an excellent job of that.  I might not be a good cook (don't ask) but I love wallpapering.......Sarah 

An Itinerary in Light and Shadow.Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.