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I’d would very much appreciate some advise as how to proceed with my 13 ye/o son who was dx 4 years ago via blood tests with systemic scleroderma by a pediatric rheumatologist in Salt Lake City. I also have scleroderma and have had it for a long time (very small amount of external involvement), have been on and off antibiotics for years and also used the Marshall Protocol (benicar) to help with lung symptoms that the minocycline wasn’t helping me with.
I need to get serious now with my son as my palliative supplements aren’t working as well anymore. He’s been coughing, his skin on his upper knuckles has some callous like lesions developing and he complains of muscle pain frequently.
I’ve got an appointment in mid June up in SLC to have him reevaluated, blood tests, PFT’s etc. It’s been awhile since I’ve been active on this site. I’m just wondering what the “best” generic minocycline is. My insurance isn’t allowing me to order the PAR caplet anymore due to the extreme cost. I’ve ordered some of my antibiotics, etc from Canadian pharmacies so I’m willing to go that route if need be.
Questions:
-What are the best generic minocyclines for scleroderma?
-Are there other antibiotics recommended for pediatric scleroderma as well?
-Are there any AP docs in Utah? I live in southern Utah 2.5 hours from Vegas so that’s an option as well.
-Any other good sites for me for help with my young son. I want to avoid mainstream if at all possible. Never say never with this disease.
Thank you for any guidance and recommendations. It seems I’m not able to put my head in the sand anymore…Martha
Hi Martina;
I live in Canada so I can’t help much with antibiotics in the U.S.If you get yours from a Canadian supplyer I highly recomend TevaMartina, I started on Mino for SD symptoms (torrent works well for me) and pulse Azith every now and then. The addition of Azith seems to be helpful for me.
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinSad to say but pelleted(time released) seems to not exist anymore.Teva is powder.I only used zith when I had active Lyme but do know several people who only use zith 5 days on and 5off because of blue marks on their faces
I take brand minocin that is pelleted. It is Meda brand. I get it through buylowdrugs out of Canada. It is made in England.
My father had scleroderma for almost 20 years. When he was unable to get the brand name pellets anymore, he eventually went to the generic from Torrent. His pharmacist ordered it for him. He made sure to get the same brand every month.
Reactive Arthritis/ Adult Rheumatic Fever due to strep throat. History of probable Lyme disease. Current medication: Amoxicillin and supplements. Daughter of the late Richie (scleroderma and AP patient for 19 years).
Thank you all for your suggestions.The powdered capsule brand by Tor doesn’t seem to help me as much as the caplet by PAR. But the PAR brand shot up to $700 for 1 month! I wonder if Tor is short for Torrent. I was given this generic by Wall-Mart.
Our daughter is 12yrs old and has Scleroderma. Just this week her latest ANA showed her Centromere pattern was 640 and that a new pattern Speckled showed up at 160, as well as Thyroid antibodies being high. We are new to all of this, only been on AP for a week now and don’t have much personal experience. We have started her on Azithromycin M-W-F 250mg and will be adding Alinia generic from Canada (I don’t have the dose yet). These two antibiotics were recommended for children. We are gluten and dairy free and she takes Vit D, Omega fish oil, liquid B12 and a good multivitamin as well as VSL#3 probiotics and Strengthia probiotics. Please feel free to message me since our kids are so close in age. I’d be happy to share anything we find that is working. Wishing you the best! You can do this!!
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