; scleroderma & isolated in New Zealand HELP please

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scleroderma & isolated in New Zealand HELP please

Hi my name is Fitzgerald, my husband (41yrs) has scleroderma and

we' seem to be in a down hill tail spin. Diagnosed in March 2001, by a very

unhelpful rheumatologist. We discovered the Road Back in June 2001, started

taking doxy, built up to 100mg MWF all was going well. Levels were coming down

nicely, and health was improving, then Oct 2002 fractured his back in a

fall. His test levels ( the one that indicates infection has increased

since,however the inflammation in the muscles, originally 3000 has reduced, now

down to around 200) these two readings tracked each other until May 2003, when

we increased 's Medication of doxy to 100mg every day to try and get his

reading for infection to reduce.(No success) Then we decided to go back to M W

F 100mg doxy, as we weren't getting a positive response, and read it was meant

to be intermittent.

Then beginning of August 2003, he got a really bad flu,he went from bad to

worse. He had a really bad cough which has been a problem ever since, Mid

August he has put on a 10 day course of Augmentin 500mg,(amoxycillin) and he

stopped the doxy for a 2-3 week period (probably being to sick to be bothered)

after the break decided to try Mincocyline started on 100mg M W F . Cough

subsided for a period but back to the Drs in Early September with bad lungs,

breathlessness and terrible cough. This time put on a course of Romicin 150mg

twice daily for 10 days. At this time Ankles swelled every joint started to

arch, slept alot.Since finishing that course of antibiotics 's

health seems to have deteriorated, never had so much pain and stuffiness, so so

breathless ( lung capacity test 1.5 av. should be 3.5) Ulcers in the mouth,

swelling of ankles(put on Brufen on 25th Sept) up to the knees, not to mention

the cough. Back to the Drs and the Protocol. His conclusion was that the

Romicin is a similar drug to clindamycin & has had a similar effect to a 5 day

course of IVS and has brought on a herx flare(bloods indicate a herx flare not a

allergic reaction). Sooo we decided to go off everything for a week and wean

onto mino slowly 50 mg twice a week and build up to 100mg M W F . We read that

Dr Franco has been using Zithromax 250mg twice a day two days a week and our Dr

prescribed that, however we are unsure how to take it (i.e. what two days and

how often? every week/fortnightly????

Took 250mg of Zithomax on Saturday (just 1 day) and cough was bad on Sunday/and

Monday, we'll see what today brings, is it a reaction the Zithromax??? Note also

all his skin has become very itchy which we haven't had before. Are we on the

right track? Who can help us and support our Dr? The breathlessness is

frightening to the extent he is prepared to try steroids, which we have

resisted until now.

Please PLEASE help.

Your assistance would be greatly appreciated.

Fitzgerald,

patjuls@...