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IgA nephritis


I live in Montreal and just two days back my son 19 yrs old ) has been diagnosed with a chronic kidney condition called IgA nephritis and sequence expalined below:

For some time my son has been having frothy urine, even after flushing the froth still stays in the pot. Has to be flushed twice. So we told him to go see the Dr. for a blood test, because his father has moderate diabetes, we wanted to check for that.

Anyways my son's blood & urine test showed albumin, and the Dr. asked for a kidney biopsy to make sure of what he thought. And the biopsy confirmed that my son has a chronic kidney condition called IgA nephritis.

The Dr explained it as under :

There is essentially no cure but the condition can be stablized with treatment with non-specific therapy such as ACE inhibitors and lipid lowering agents. In the Asian countries patients are now being treated for a few months with Prednisone and / or Cyclophosomide. In Italy a controlled
study in 1999 showed some long-term better outcome when patients are treated with steroids for six months.

There is 30% damage already done. He will be monitored every month. He is on mild dosage of medication, because if he can take mild dosage and does not have dizzyness, vomiting, face swelling etc. then he can go on the full
dosage. Later he is planning to put him on cortizone. But whatever be the case there will be gradual deterioration and later will need a transplant.

Therefore, as a mother of my only son, I am seeking any type of assistance, information, advice that you can help me with.

Hope to receive your response asap, as you know time is ticking towards the kidney's deterioration.

Thanks a zillion.

face=Verdana EUrva@emsb.qc.ca

Posted on : Tuesday, June 24, 2008 1:04 PM
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my husband was diagnosed 20 some years ago and there has been deterioration over the years and he is at 23% kidney function. he finally agreed to see a new specialist who is actually doing something active as opposed to just telling him to wait for dialysis. there are fish oil studies this doctor showed him (that I had discovered about 10 years ago from MT Sinai Kansas City) and he needs hectorol(Vit D in a form his kidney can use) and shot weekly of procrit...there are things to do and he was previously only being treated for associated symptoms of high blood pressure and cholesterol. Previous doctor told him he wasnt eligible for transplant lists until on dialysis . WRONG. New doctor said all wrong and in fact with the new antirejection drugs many more matches are possible and in fact someone never on dialysis makes a better transplant recipient. I may have to do some kind of exchange my kidney for someone else that a center matches you with for their relative's kidney. Where are these postings at?? God Bless you and Good Luck.

face=Verdana Askybabe@aol.com

Replied on Tuesday, June 24, 2008 1:05 PM


You have surely gotten this message by now, but wanted to alert you to the use of Fish Body Oil. It has been shown in many studies to reduce the long term degeneration of this disease. I too have the disease (found it at 30, am now 40). Also, low or moderate use of dieuretics (coks, caffein, coffee, etc.) and protein will lower the load on the kidneys.

face=Verdana akendrick@secor.com

Replied on Tuesday, June 24, 2008 1:06 PM


Great Post. I too have the diesase. It is aactually rather common in men. I was diagnosed at 30, and am now 40. I too am taking Fish Body Oil. I'll look up the Hectrol. Keep me posted (use my e-mail) of any new info.

Thanks again.

face=Verdana akendrick@secor.com

Replied on Tuesday, June 24, 2008 1:07 PM


Hi there!
Our 17 year old daughter has had the same diagnosis and today is the first day we are searching the internet for information.

Could you please forward any information on IGA Nephritis that you may receive.

Thank you

face=Verdana dixons@dccnet.com

Replied on Tuesday, June 24, 2008 1:08 PM

Hello. I don't want to sound insensitive but my advice would be to try not to worry. I was diagnosed with IgA nephritis at age 14 and am now 34 and I believe in pretty good health. In my teens I went through the fortnightly trips to the hospital where they took my blood and urine, did a radioactive scan, the biopsy etc etc and different doctors kept saying "yes, you've still got IgA nephritis, please come back in two weeks" I know they were trying to help and I thank them, but they did no good. Eventually I just stopped going. Fortunately and unbelievably while studying in Heidelberg, Germany through coincidence, or not, I had a few appointments at a hospital with a Doctor who it turned out was the world's foremost expert in this disease. A very busy and distinguished professor, he sat down and chatted away to me and even got down one of his old books from the shelf and left me to make photocopies of pages referring to IgA nephritis. The bottom line was that, as others have said here, there is no cure only potential management with steroids. He however did say that a certain proportion got worse, some stayed the same and some got better with remission. I decided at that time that a) I didn't need to visit a doctor about it again (baring unforseen circumstances) and B) I was in the third class. I didn't decide to bury my head, I avidly do my own research, just that I would manage the disease by myself. As the Chinese say "A person with one disease will live longer than someone with no diseases".
I've been vegetarian since I was 19 years old and mostly vegan. I read once that milk and cheese and excessive protein is hard work for the kidneys. I do drink alcohol in moderation but no carbonated drinks for the same reason as milk. I found out that very heavy exercise is stressful for the condition and so I have done yoga since my early twenties. Basically I've always used it as an early warning system i.e. if my urine turns a little darker it indicates an infection of some sort, usually a cold.I don't mean to be glib, just that I tried to use it and keep positive rather than focusing on it. I have the deepest sympathies for someone whose symptoms are more severe.
What I've learned is that if my body energy gets low through stress, or I get a cold or I over indulge than I can expect mild bachache occasionally and or darker urine. So I try to keep healthy. Apples, onions are anti-nephritic. You'll find just eating a breakfast of apples will clear your urine. So fruit for breakfast is good. Drink a lot of water. Try to avoid colds by keeping the bloodstream more basic. (lots of fruit and veggies/lemon water etc).**(see also the work of Edgar cayce)**Lots of garlic. Spices are also good to keep colds away. The spice "cloves" are especially good. I eat cloves and they seem to protect me from colds.
Try to find ways to reduce stress, daily meditation etc. According to Chinese medicine Nephritis is linked to over-thinking and worrying--too much energy in the head caused by too little energy in Kidneys. I would seriously recommend finding a good oriental doctor and getting regular accupuncture. Unfortunately in the West, at least where I was from stuff like accupuncture was a little too exotic or strange, thank goodness that's changing although it's a pity it is expensive. I live in South Korea presently where accupuncture is so normal and very cheap (1 pound, 50 pence for a full check up!) Edgar Cayce also mentioned osteopathic or chiropractic treatments for lumbar vertebrae to help nerve function and circulation to the kidneys. If you want to go with the steroids then fair enough but I would say at least consider supplementing with complementary approaches and natural healing modalities. Water melon seed tea is reported to be a kidney tonic as are adjuki beans.
I guess I always held the attitude of not focusing on it, expecting my body to take care of it and expecting to be healed. Go vegetarian and stay away from dairy. Drink lots of water and eat a balanced diet. Never expect/wait for your kidneys to deteriorate or expect dialysis. Whatever you hold in your mind will eventually come to the body. Don't let anyone program your outcome.
If it happens then it happens and you'll deal with it then, but personally I believe that you can prevent it from happening by not concentrating on being sick. That's what works for me, but we're all different. Just follow your own intuition. God bless and good luck.
Replied on Tuesday, June 24, 2008 1:08 PM

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