Zoe's story

[Guest guest]

Hi group,

a has just sent in the story of her daughter Zoe, who is on the

antibiotic protocol for systemic scleroderma, diagnosed at the age of

eleven. I have put it on our web page at rheumatic.org and a has

supplied her email address so others can contact her.

Chris.

Begin forwarded message:

> From: a Krauza <paula_krauza@...>

> Date: 4 March 2008 9:51:32 AM

> cadlard@...

> Subject: Medical History

>

> Hello,

> I visited your site in 2006 and found it very helpful and

> encouraging.  I wanted to offer our story regarding our daughter's

> progress using AP to treat scleroderma.  It is as follows if you wish

> to use it.

> Sincerely,

> a Krauza

>

>

> Our daughter was four months shy of her 11th birthday when she was

> diagnosed with systemic scleroderma in May 2006.  The doctor who

> diagnosed her told us that she probably had had " below the radar

> symptoms for a while " and that it was very common to miss them. 

> Looking back this was true.

>  

> In October 2005, Zoe came to me w/ a few cracks in her fingertips that

> I attributed to " dry skin. "   She'd been riding her bike to school and

> while the weather was getting colder she hadn't been wearing gloves. 

> I thought it was a result of the colder weather.  Though I noticed

> that these took a LONG time to heal, I wasn't too alarmed.  Then in

> December 2005 we noticed that her fingertips were turning purple.  We

> thought it was really odd and attributed it to her being cold and

> needing to wear more layers.  Oh the excuses you make when you don't

> know, or want there to be, something seriously wrong.  It was also

> around this time that we noticed that she was having difficulty

> twisting the lids and caps off jars and bottles.  In January 2006,

> while at a routine visit w/ my family doctor I mentioned the cracked

> fingertips and purple fingers.  Our doctor said that it sounded like

> Raynaud's and referred us to a rheumatologist b/c Zoe had also

> complained of pains in her shins.  In early March '06, I called the

> rheumatologist to set up an appointment.  By this time, Zoe was

> frequently waking up in the mornings nauseous.  Again, there seemed a

> " logical " explanation.  With everything in bloom, we were told it was

> post-nasal drip and that this was probably going down the back of her

> throat and making her sick to her stomach.  In addition, she commented

> that she was having difficulty running the mile in the gym so I

> thought it was allergies or asthma.  At this point I still didn't know

> of scleroderma.

>  

> After the diagnosis, Zoe was on Prevacid and Revatio from May -

> December 2006. The former was to protect her esophagus from acid

> reflux while the latter increased circulation to her hands and

> prevented ulcers from forming.  In July 2006, we had (2), two-hour

> Prednisone IV drips.  Zoe was to have four of these and then start

> Cytoxan. However, an ulcer on her right hand couldn't handle the drop

> in her immune system and she was hospitalized and ultimately given a

> picc line of IV antibiotics to treat the infection that had gotten

> into the bone of her finger.  Zoe was on clindamycin for three

> weeks-450mg three times a day-at which point she broke out into a

> rash.  The doctors assumed that she must have developed an allergic

> reaction and switched her to an oral antibiotic.   A few weeks later,

> Zoë was given a routine pulmonary function test (PFT) to check-up on

> her lung capacity.  We were getting ready to start her on Cytoxan and

> were told it would address her lung involvement and slow down the

> progression of the scleroderma.  Interestingly enough, her PFT

> readings in some areas were now normal while still others saw modest

> improvement.  Since we didn't have her on any medicines to

> specifically " help " her lungs, we immediately contacted her rheumatoid

> doctor to see if she might be able to account for the improvement and

> postponed the Cytoxan treatments indefinitely.  As a concession, b/c

> we were still trying to " work with " the pediatric rheumatoid

> community, we agreed to put her on Methotextrate injections that she

> took from September - December 2006.  She was taken off these b/c it

> was harming her liver.

>  

> It would seem that her hospitalization in July '06 had a silver

> lining.  It was at this time that I was on-line with the juvenile

> rheumatoid group I belong to and a mother posted an inquiry as to

> whether any one had heard of an anti-biotic protocol (AP).  She had

> recently put her 16 year-old daughters on it for scleroderma and was

> pleased with the results.  I in turn Goggled the term and learned that

> it is an IV and oral therapy that has been used for over thirty years

> by some doctors in the medical community who believe that rheumatoid

> illnesses are caused by bacteria.  Furthermore, patients see their

> symptoms improve or go away altogether.  What was so interesting to me

> was that the protocol initially calls for a 5-day, twice a day, and IV

> drip of Clindamycin.  The very drug Zoë had been on back in July. 

> This seemed a possible explanation for why we saw an improvement in

> her PFT as well as in the condition of the skin on her arms and hands.

>  

> I immediately followed up with this mom on-line as well as with

> several other folks who have used AP.  After reading numerous on-line

> personal accounts and a book entitled " Scleroderma:  The Proven

> Therapy that  Can Save Your Life " by Henry Scammell, I was convinced

> that we had to at least try it.  Our quest to get AP for Zoë led us to

> Ida Grove, Iowa during the last week of September 2006 where Dr. S has

> been practicing it for over thirty years.  He is one of its early

> pioneers and has helped over 2000 patients.  Dr. S met with us and

> given Zoë's history with a rash, he recommended we start with a low

> dose to  she how she responded.  If she didn't have a negative

> reaction he'd gradually bump it up.  As it turns out, Zoë did just

> fine and after 7 doses of 300 mg she was moved up to 600 mg for the

> final three IVs.  In terms of continuing care, Zoe  takes the oral

> antibiotic minocycline twice daily and we have been back to Iowa on

> two other occasions (March 2007 and September 2007).  On the

> subsequent trips the amount of clindamycin  she gets has been bumped

> up.

>  

> Since her first getting clindamycin in the summer of 2006, my husband

> and I have noticed how much more supple the skin on Zoe's hands and

> arms are--early on they were as tight as a drum.  She also has her

> upper lip back-it seemed to thin out and disappear for a time.  Zoe

> also receives occupation therapy (OT) to help her regain strength  in

> her hands as the infection left two of the fingers on her right  hand

> in a bent position.  For a time she saw an OT person four times a

> month and since last Summer (2007) is down to every other month, once

> a month.

>  

> In addition to the IVs in Iowa every six months, Zoe gets a " pulse "

> dose almost every month and is taking probiotics to offset the impact

> of antibiotics to her digestive track.  We have also incorporated

> holistic methods and Zoe goes for acupuncture three days a week.  We

> are cautiously optimistic that we are on the right track.  One always

> worries to some degree and yet the anxiety level we experienced early

> on has diminished greatly.

>  

> a Krauza

> paula_krauza@...