Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 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@... Quote Link to comment Share on other sites More sharing options...
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