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Good evening, I am trying to make sense of a diagnosis of scleroderma with internal organ involvement. My mom has had Reynauds for many years and about a year and a half ago was diagnosed with lung infiltrates she began losing weight and in August became very ill. Was diagnosed with scleroderma and.acute kidney failure. She began dialysis in early September. She continues to lose weight and is down to 103 pounds from about 130 a year ago. She is now on dialysis 3 times per week and takes 4 blood pressure medications. I have not seen really anything about anyone with this type of involvement.
In the Phoenix area-please help with any info on what to expect on this roller coaster ride. Thank you ,Judy BHi Judy,
Very sorry to hear about your Mom and just wanted to send you a warm welcome to you as a newly registered forum user.
There have been cases of kidney involvement with some SD patients who are still able to begin AP (antibiotic protocols as per Dr. Brown), although it’s advisable to be working with an experienced physician. There is a very experienced AP rheumatologist in Riverside, CA, if you think your Mom may be able to travel to see him on days when she doesn’t need dialysis (or perhaps it can be arranged while there?).
There is also a very experienced AP doc (a Doctor of Osteopathy) in Iowa who trained under Dr. Brown and who is very kind to freely consult with physicians and patients via email and phone. Talking with this doctor may provide some insight on your Mom’s case in terms of potentially beginning treatment.
If you would like me to send you a PM with contact info for these two experienced docs and also other AP docs in AZ, I’d be happy to do send these to you in a private message.
Dear Maz, Thank you and yes please send me the physician information. I would greatly appreciate any information
Hi Judy,
It’s a pleasure! Just sent you a PM (private message) which you can retrieve by clicking above, beside your User Control Panel at the top of this forum where it will say (1 new message). If you have any trouble finding it, just let me know here, because you will need to post 3 times on the open forum in moderated status before you can send a PM…this is a spam-blocking measure. 🙂
Hi Maz, Thank you for the info, I will look into the docs you sent info on and see about travel to Cali, Moms doc may not allow travel due to her lung involvement but it doesn’t hurt to ask. I sincerely appreciate your assistance and will keep searching for answers, we have so many.
Hi luv,
My name is Paddie H., and my mom was diagnosed with systemic scleroderma about 8 months ago. She had rheumatory arthritis that went into remission 15 years prior to her latest diagnosis. Currently, She is receiving dialysis 4x a week and has a trachiatomy (sp?) and is on TPN. She had a feeding tube but it keeps coming out. Obviously, western medicine know little about this terrible disease. It took them about 6 months to figure out what it was and had her taking all these different drugs to curb the symptoms which in turn created side effects. She’s 74 years old, and weighs about 85 Lbs now. She’s lost between 15-20 lbs. since being healthy. We don’t know how long she’s been having these sclerodermic systems as she’s never been much of an eater.
She almost has pure Cachua (Inca) blood, and we think maybe her mother could have died from scleroderma as well. We feel so helpless, and she’s suffered so much. She’s been on this nightmare of a rollercoaster for so long now, but she’s not giving up and either are we. She’s in Kindred Hospital in Denver, CO., and my brother and I live in Honolulu. We have been over to see her 5 times since she was hospitalized. She’s been in ICU three times with infections due to the caphiter and IV’s.
One thing that I know has been working somewhat is foot reflexology. My girlfriend is from Japan and is an apprentice of one of Japan’s renowned Reflexologist. She taught me how to do kidney flushes and how to stimulate all the organs that are affected by the disease. Unfortunately, dialysis alone does not get rid of the toxins left by the drugs so they have a tendency to build up and cause problems. If you want I can send you a diagram of how to do it…It takes about 10 min per foot. Since I’ve been doing it my mom has been able to slowly ween off of the ventilator and is regularly having urine in her stool.
Well, I hope this is helpful…I haven’t given up….and you shouldn’t either…ALoha
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