A woman's prerogative...

Submitted by sugarglider on Wed, 2011-08-24 06:20

I started a blog a while ago then deleted the whole thing!

But after some kind words from an articulate bug I am re-starting my blog :\

I am a little scared by the lack of positive stories on here, and the number of people who are still on an antibiotic protocol years after starting.

Am I clutching at straws?

Since starting antibiotics I have had glimpses of hope that I am not sure are real, and a lot of negative reactions that are really scary. 

I can't really write at the moment, my head is not in the right place.

 An English woman’s prerogative: to break off her vacation to say that many of the people still on the protocol are just too scared to stop and there is some reason to this  since the treatment is so new, with nothing to compare against except, with MS, a non-stop deterioration whatever is prescribed. 

However, I finished the protocol four years ago and haven’t looked back.................. Sarah

A  Journey through Light and Shadow

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.


Your paragraph about the good things and the bad scary ones caught my attention.  I have to flatly disagree with you about the "lack of positive stories".  I am only one of what I consider many.  Most of the ones who are better don't hang around - they get on with life .  In most cases, I think that life would be dismal if those people had not grabbed the straw of this website.  In some, it may BE dismal - there are two that I know of who have not been helped by this - but they also had no glimmers. 

The reason so many of us take years to get from here to there is this:  it takes years to get from here to there.  If you are like most of us - there IS no alternative.  You are one of the fortunate - you found this site and, just as important, you have glimmers.


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

Count me as one who improved dramatically, remains improved at probably 98% of my former ability, with less fatigue than I have ever had in my adult life. And, as Sarah says, just too nervous to stop taking the meds. I don't care if I have to take them for the rest of my life; small price to pay to stave off what was turning into a terrifying slide into oblivion.

Just to clarify, I could not make evening plans -ever- because I would so often crash on the bed after work, still in my clothes, unable to take another step.  I would wake groggy, after a few hours, eat something, watch a little tv and go back to bed. 

Last Thursday, I had dinner with friends (an hour drive each way) and got in at eleven.  Friday, I went out with a former co-worker, driving nearly an hour each way for the dinner, and stopped to buy bathroom tile which entailed an hour's shopping, to boot.  Got in at ten, then did two loads of laundry in the basement (up and down 34 stairs four times).  Saturday, three hours of shopping with my guy, then dinner at a great restaurant and a movie and drinks afterward. Sunday, more shopping with a friend for their new baby, a stop for a glass of wine and appetizers, then a four block walk to a neighborhood Greekfest (and a four block walk BACK to locate my atm card).  A cousin texted and invited me over.  Turned out it was her wedding anniversary and several of us stayed til eleven.

I could NEVER have done this much in four days before the protocol.  I could never have done this much when I was thirty years old.  This protocol clearly saved my life and, as a bonus, it gave me a quality of life I never, ever had.

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

Oh, and I'm leaving now to pick up my bathroom cabinets (me, alone) and bring them home. Once I transport the three boxes, move them to the back porch with a handtruck, and bring them inside, I'm heading out to pick up a hundred square feet of marble floor tile (kind of heavy, so it's only 5sq ft to a box). Then, I'm delivering a few cans of paint to Mom's condo, so I can start painting her kitchen cabinets tomorrow. By the way, my house has 16 stairs up to the bedrooms. I run those stairs anywhere from four to twenty times a day. The house is undergoing total restoration and I'm doing much of the work myself. I could never have done this without the protocol.

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

Sugarglider, how in heaven's name can you expect to have your "head in the right place" if you have ms?!! I mean, that's kind of a given; almost a definition of the disease.

I have been taking abx for 5 years and it is obvious to me that I quickly slide back when I pause in the treatment. It hasn't cured me: in some ways I have gotten unexpectedly better, in some, somewhat worse. But the difference after a pulse is so palpable! If I don't take a larger pulse than my body can stand, I am so much stronger afterward and can feel my muscles working. (woohoo!)

The reason that you see so much negativity on this site is because most people who write are scared and panicky: it is, after all, a support group. And it's here for you when you need it.

Just keep at it. A better, faster protocol may someday be developed but this is what we have for now and thank God and Drs. Stratton and Wheldon that we have it. It works. Really, it does.


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


Your first response to your new blog is from Sarah, one of the most significant success stories on this site!  How awesome is that!  You are not clutching at straws; you have found a lifeline that will drag you to safety.  Hang on to it for all you are worth.  There are many other success stories here: read the Patient Stories links at the top right hand corner.

(I should really write up a condensed version of my blog and send it in for consideration as a Patient Story, as I consider myself to be a success story too.  But I'm too busy being a patient activist Down Under, so just check out my blog to read about my success.)

The glimpses of hope you have had are very real.  Stay with it, Sugarglider.  You have chosen a lovely name - for those who don't know, a sugarglider is an Australian marsupial, a small gliding possum, a bit like a flying squirrel - so glide from one glimpse of hope to another as you embark on your journey back to wellness!

LadybugImage removed. 

FM & chronic myofascial pain 2000; Cpn; EBV; lead poisoning; CAP since Jan 2009; Flagyl pulses & Azi M/W/F from Mar 2009; now also Cymbalta; Rivotril; Low Dose Naltrexone; Doxy.  Pain-free and heading upwards again.

Sorry guys for being such a negative doomsayer! I'm all over the place at the mo. Just add PMS to the mix and I'm a basket case.

I'm not giving up. But sometimes I feel like a ball of anger and despair. Not helped by pretty severe depression and anxiety. I don't know if these are products of my illness or whether I'm just naturally loony!

Thanks for being here everybody.


RRMS diagnosed 1996. Many years of weird symptoms before this. Started CAP around 6/11? Mino 200mg daily, Roxy 300mg daily, Tini pulses started 11/11 (very tentatively!) Major problems with headaches 01/12, substitued mino with doxy.&l

Just to join in here (as a current long term plodder) I remember the anger and despair stage well and I am pretty sure now  that it is the product of the cpn bugs kicking back at you for disturbing their life cycle. We call it die-off and it takes many forms, physical and emotional.

Thanks for adding another animal to my vocabulary, I love the squirrels that live in my garden trees- even when they dig up the bulbs that I've planted around the place. Not too keen on the acorns that they have buried and forgotten; one oak tree is enough!


Greetings Sugarglider

You are in good hands here. I am a long term plodder as well. Because I've had so many years of illness, I think I will always be plodding along to wellness. I don't mind as I've certainly gained a lot of ground just in the past year of doing CAP. You will see my photo is on top of the Sydney Harbour Bridge which I climbed in March this year. That really is a BIG visual of my progress.

I'm guessing it seems a bit unreal that you've found something that will be helpful for you on the itnernet. I know that mainstream medicine really has nothing to offer. If you can spend some time on this site, you'll find plenty of information that supports your treatment.

Don't forget to visit often and ask as many questions as you want answered



CFS 32years/FM 14 years/ CRPS 5 years/.  Previously MP 5 years. Off everything since 01/12/2012.