Maura (Uk) on 02/02/2015
Replied By Ali (Pakistan) on 07/30/2015
Replied By Rahat (Abby) on 08/04/2015
Replied By Maura (Uk) on 10/25/2015
While on vacation she came down with food poisoning and did not relapse, also after returning to school after the Summer holidays she came down with a sore throat, cough and cold but again without relapse, previously the most trivial infection would start a relapse.
Replied By Tina (Missouri) on 03/09/2016
Replied By Maura (Uk) on 03/10/2016
Hi Tina,
Yes my daughter was crippled with pain when reducing steroids, her doctors always seemed very surprised by this. I am a biochemist and through research, I came to the conclusion she was suffering from osteomalacia (sort of adult rickets) brought on by loss of vit D3, caused by the massive doses of steroids used for Nephrotic Syndrome, I gave her 5000 iu of vit D3 along with the necessary co factors, ( Magnesium Vit b2 and vit K2, and after 24 hrs she already felt relief, all pain was gone in 5 days. Tina I am so sorry you are suffering from this terrible illness, and because it is uncommon no one understands what you are going through, the treatment causes as much suffering as the disease. my daughters teachers seemed to think she had cystitis and that I was making a fuss over nothing. She still has her vit D3 as it is still too early to make much vit d3 from the sun. Shes had no side effects (actually her eczema and hay fever disappeared) but that's a good side effect. I am sort of embarrassed writing this because as a scientist this all seems too good to be true. I am currently reading every bit of research I can find on Vit D3 . I hope you can get into permanent remission soon.
Replied By Tina (Missouri) on 03/12/2016
Thank you for getting back to me so soon...Today I had horrible hand and forearm cramps to the point that my fingers were locked in an unnatural position. The pain was excruciating. I tried to eat anything that had potassium in it which seemed to help. Has that ever happened to your daughter? I have started to take vit D3 in hopes that will also help. Please ANY advise/help would be appreciated.... Thanks for all your help. Tina
Replied By Maura (Uk) on 03/13/2016
So sorry you are having the dreaded cramps, yes my daughter had this, it's very common, The problem is that with Nephrotic Syndrome when you lose the albumin through the kidneys it is carrying all sorts of valuable substances as its known as a molecular taxis. So you can lose all sorts minerals, hormones, fatty acids even drugs. So you can become depleted very quickly in many things. The best thing for the cramps is Magnesium, in fact its difficult to keep potassium in your cells with out it. Unfortunately with today's farming techniques ( artificial fertiliser, etc ) its difficult to replenish the lost minerals through food alone, I use a coloured sea salt that hasn't had the associated minerals removed, I also gave extra magnesium, zinc, copper and selenium as I felt that they were particularly lacking in modern foods. I also tried to give her the best diet possible. I had one mom tell me when her son is weaning off the nephrotic levels of steroids, that he has to use a wheel chair, because of the pain and muscle problems.
Replied By Nick (Greater Manchester, U.k.) on 12/12/2016
Replied By Timh (Ky) on 12/13/2016
Start with supporting Kidneys. To reduce infection & inflammation, place a Magnetic Bed Pad in the low-back area of the K's while reclining in your living room and/or in your bed while sleeping. Next take Cranberry capsules or softgels to clear out infection. Next take Dr Christophers Kidney/Bladder herbal combination to strengthen K's.
For diabetes, take a good multivitamin/mineral supplement plus extra Chromium. Eat lots of Cinnamon or take capsules to improve glucose metabolism.
Replied By Ruby (Pakistan) on 11/04/2017