CKD Stage 5

[elurhmae]

Hello, my boyfriend (age 27) is in Stage 5 CKD due to a fribronectin glomerulopathy. I found a chinese drug called shen shuai ning capsules and want to know about the efficacy and if anyone has tried it? I am running out of hope but it's a very rare disease and a transplant wouldn't completely mean remission.

Thank you.

[SN23]

Hi Elurhmae,

I can understand how that must feel🙏 I do not know about this medicine. You should certainly check with the nephrologist before taking it. Diet I think is a big part of managing the disease. So do explore your options. I am sure more knowlegible people in the group would advise you better than I can. I do however want to add that I recently joined a group on FB called Natural Kidney Journey. They have a strict protocol that has helped many. Some find it restrictive but works very well for me since I am plant based any way and cook mostly without oil. Do reach out to them and see if this is of interest. I am really grateful to be learning so much from that group.

My prayers are for you🙏

[elurhmae in reply to SN23]

Thank you for responding. It is just that at the moment all the drugs are failing but I will be sure to check out the page. May God keep and protect you through this journey.

[SN23 in reply to elurhmae]

My son was also 28 years old when he was diagnosed. So I do understand how you feel. Other than blood pressure medication he was not given anything. He has IgaN. We have been managing with diet alone.

Prayers for you too🙏

[elurhmae in reply to SN23]

We recently started dating and I found it by chance since I am a medical student at the hospital he frequents. He was diagnosed at the age of 14 and his dad has it too. he doesn't really want to drastically change his diet and I can't force him too (he can be very difficult). But I am trying to find alternate treatments other than the medication. Thank you for your support.

[SN23 in reply to elurhmae]

My very best to you and your boy friend.

[Andreli]

Hi ,

I am very sorry for you boyfriend condition. I am not familiar with this herb. 10 months ago I had IgA nephropathy. I have gone down to stage 4B with eGFR 18. Doctors were hopeless. Today I believe and pray I am on the path of recovery with eGFR 50.

I don’t think nephrologist will have any idea that this Chinese herb does and will probably discourage you. Amongst many supplements I have used DTS product sold on line by Kyotsujiguo company from Japan.

I wish you and your friend best of health.

Andre

[elurhmae in reply to Andreli]

Hello, thank you so much. If possible, can you tell me the supplements you took and what they were for?

[Andreli in reply to elurhmae]

Hi,

I am happy to share with you some of my detail.

My IgA Nephropathy is caused by immune system disorder. From my own literature research I concluded that I need to support my body and specially address inflammation problem. Great majority of diseases are caused by inflammation. Unfortunately anti inflammatory medication causes big problem for kidney and liver. I have discovered that poorly done root canal therapy can ruin your health for good. Please refer to a documentary program titled “Root cause” , you will be astonished.

Again I need to stress, that I did all this without nephrologist consent, because he simply didn’t have answers. Instead he was preparing me for dialysis in Jan this year. Thank God I am much better now!

I started with Prednisolone . This is immune suppressant drug. My eGFR increased in a week from 18 to 34. Then I started aggressive supplementation:

Vit C - 10,000mg , taken over the whole day, diluted with water

Vit A, D3, E, K2MK7, Fish Oil 4,000mg, B12, Niacin, multivitamin and antioxidants, hemp oil, magnesium.

I drink ~2,5L of water each day.

I have eliminated sugar and carbs from my diet, because these two are fundamentally the main causes of inflammation.

I stop eating rubbish , processed foods, fast food, anything that is fried in vegetable oils, soft drinks, etc... all these products contain toxic substances that harm our body in most unpredictable way.

I returned to gym. I am doing cardio and some weight, 4-5 days / week. I feel great emotionally and physically.

Our body has incredible self healing and recovery ability, provided we take good care and give the best nutrients. If you like to write to me, my email address is [e-mail].

Don’t give up, please. I wish your friend all the best.

Andre