Living with Nephrotic Syndrome (NS)

I have had idiopathic glomerulonephritis since 1990. I was told it was caused by a virus or a heavy metal. I was only 24 years old when I got it. I did the prednisone, unsuccessfully. I gained 80lbs in just a few months. I was spilling over 11g protein daily. My cholesterol was over 400 and I was so tired and puffy. The docs wanted me to take blood pressure meds to reduce the kidney damage. Since my pressure was normal, I refused. They told me that I would never have children. They sent me on my way and told me that I would need a a transplant within 10 years.

I found a doctor who believes that a vegan/ allergy- free diet could repair the kidneys. I was desperate and so I tried it. I also started acupuncture and herbs. I reduced my exposure to over the counter drugs and quit smoking and drinking alcohol. I took all stress off my kidneys.

With each 24 hour urine my numbers improved and the doctors asked me what I was doing. When I told them, they asked me to present my plan to physicians at the hospital where I was being treated.

When I moved to North Carolina, I started with a new nephrologist. I told him what I was doing and he hired me to do research for the “glomerular disease collaborative network” at the University of North Carolina Chapel Hill.

It took 8 years in total, but I finally went to complete remission. I was able to have 2 children with no problems.

About 5 years ago, I started to get lax about my diet. I would eat junk and I stopped taking care of myself and the GN returned. Each time I got my diet back on track, it would completely go away…much quicker this time.

Anyhoo…a few months ago I started getting lazy with my diet again and Im back to where I was 20 years ago. I have terrible edema and fatigue. My 24 urine says Im spilling huge amounts of protein. My new nephrologist wants me to start prednisone and bp meds again.

So right now Im back at square one with my diet and acupuncture/herbs. I truly believe that I can bring my body back into balance with natural means.

When I told my new nephrologist of my plan, she was skeptical. I have actualy presented her with research on GN and other autoimmune diseases. I asked her if any of her other patients would be interested in lifestyle/dietary changes to help with their kidney disease and she said that maybe only 10% of her practice would be willing to change their lifestyle to get better.

Oh well, Im on my quest to get healthy again. It has worked for me in the past and I hope and pray that it works again.