October 1998 ,the first tip-off something wasn’t good was that my blood pressure started to rise. A trip to my internist yielded blood pressure med .One month later ,I started to get big swelling in my legs and ankles .another trip to the internist to investigate the possibility of the blood pressure med being the cause .This resulted in a change of meds but no help for the swelling .Jan.-Feb of 1999 saw my hands getting very swollen –A trip to a hand specialist yielded a big bill and no results “maybe this ” maybe that —A trip to a cardiologist to eliminate the possibility of heart problems also came up negative .. March through June saw me bi–weekly at a local rheumatologist —in this time frame swelling expanded to lumps on both wrists .,elbows.and knees ,No dx from the rheumatologist –by chance a basil cell skin problem was discovered on my back -this trip to a skin doctor yielded some information –in addition to removing the basil cell he took a nail fold test –the report went back to the local rheumatologist “possibility of collagen vascular disease “..Now the rheumatologist started asking “has anyone mentioned scleroderma ” The reply by me was negative –The summer of 1999 saw me getting Raynauds and some swallowing difficulty along with my hands progressing into severe contractures -this along with hand skin tightening -leg and arm tightening made me a sorry mess . Finally the rheumatologist suggested to me to get baseline exams on my lungs kidneys and heart –this set off alarms –They don’t expect me to get better and want these baselines to monitor my decline –Along with this suggestion came a suggestion to contact a Doctor Seibold at Howard Wood Johnson Med Center in NJ as they were running a study on an experimental drug called relaxin .–It was time for me and my wife to do something on our own –I was feeling lousier and lousier and was forced to wear sweaters and gloves in July and August !!!!!!-Fortunately .my wife was a research librarian who really dug into matters –we were prepared to go all over the world –Looked into a new approach in Japan –looked into relaxin and also found two life saving tidbits of info –CNN had reported on a revolutionary treatment by a doctor up at Harvard using the brand of minocycline called Minocin –two -a book was recently published ” Scleroderma -the Therapy that can save your life ” By Henry Scammell —-What impressed me was the fact that the study up at Harvard yielded I think 6 out of 11 successes ..To my way of thinking –this was far better than anything we were able to find –Reading the book supported our decision —An appointment was made to see Dr Trentham up at Boston for Sept 1999–One quick look by him and systemic scleroderma was uttered ..However he concluded by saying “Its good news and bad news -definitely systemic scleroderma but definitely we will get you better ” –The way he said it –I didn’t doubt it for a minute !!!!!Before I make it sound too easy -it took about 5-6 years for complete remission ..After starting the so–called Harvard Protocol -it took about 6 months for the fatigue to lift –Then about 5 years or so of tiny tiny changes that resulted in total complete remission —The most dramatic testimony is the recovery to my hands I can not overstate how bad and contracture they were –my local internist to this day still talks about how bad they were and how perfect they are now !!!
To give one the scope of my illness and subsequent recovery heres an incomplete list of my symptoms and result:
- Skin tightening —completely recovered
- Mouth tightening –completely recovered
- Severe hand contractures –completely recovered
- Swallowing difficulty –completely recovered
- Reflux —completely recovered
- Swellings –totally gone
- Raynauds about 90 % better- no more gloves
- Energy level –excellent
- Internal Organs –All normal
I am left with a somewhat darker skin and the smallest touch of Raynauds –that’s it
I continue to take the antibiotic at the same dose as well as reflux med and a calcium channel blocker for the Raynauds —
I have no limitations -except for whatever my age brings –we spend much time travelling and ab out a year and a half ago took an ambitious motor trip from Long Island NY to as far as Arizona and then swung north to Cheyenne Wyoming –the trip took about 30 days and covered 6000 miles . When sick I couldn’t drive sixty miles !!!! –we enjoy retirement and follow our grand children to all the swim meets up and down the East Coast -on weekends when no meets –we find auctions up to 300 miles away –Life is good and we are really enjoying our retirement which was doubtful 10 years ago !!!!!!
Update
Everyone around here knows of my success in defeating a mean nasty case of systemic scleroderma by using both DR. T and his {Harvard} antibiotic protocol . It wasnt quick –took almost 6 years but I can safely say now REMISSION –I never liked it when a doctor proclaimed it nor when people claimed it after a year or two –however now I can safely say –Virtually All Better –And I had a nasty case with a long list of symptoms —I continue to take the full dose of minocin along with an ACE inhibitor and calcium channel blocker –the only residual of the illness is very mild Raynauds —I intend to stay on the right side of the grass for a long time.