How I cured my glomerulonephritis

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Re: How I cured my glomerulonephritis

Postby hotashel » Mon Mar 23, 2015 5:43 pm

Hi foam,
your right you don't know me so you have absolutely no idea what I am like, no wonder you have had such negative replies if you suggest that people have left them selves get in a state on purpose you need to get a grip. Your GFR was only ever 50 mine dropped from normal to nothing I didn't have a chance to do anything. Don't try and say you are the same as everyone on here our situations are NOT the same. I will be rude now I think you are an idiot, there you go call me some more names because do you know what sticks and stones make, sticks and stones I have conquered bigger than you and will continue to do so.
hotashel
 

Re: How I cured my glomerulonephritis

Postby Rik » Tue Mar 24, 2015 1:26 pm

before this gets out of hand and people get too upset ...
please ...
remember ...
each of us may be travelling the same route of kidney disease ... but all of us take slightly different paths ...

people do forget that there are many many reasons for kidney disease ...
but these can be narrowed down to just TWO types ...

Acute Kidney Disease ...
and
Chronic Kidney Disease ...

one is where the kidney is ill ... and can ... with help ... get better ... a short lived illness ... (short lived can still mean years ... but it does get better)
one is where the kidney is ill ... and can ... with help ... steady the illness and slow down its decline ... a long term illness ... (no further explanation required)

so please remember … that AMAZING CURE being offered … could be curing an acute illness … NOT a chronic one … (they forget to tell you about that when they are telling you about their wonderful cure!!)

we have ... over the years ... had many and various 'AMAZING' remedies posted here ...

vinegar ...
never tried this ... other than on my fish and chips ... (no salt!!)

indian head massage ...
I have enjoyed many ... for relaxation ... but still had kidney failure ...

various 'secret cures that the Drs wont tell you about' remedies that as long as you send $50 or so they will tell you about it ...
I wont bore you with all that as a Mod I have removed ... but there have been MANY!! …

but the one that swears that if you drank LOTS of water it will cure you .................... well …………… I personally had a problem with this one ... :roll:
as at the height of my illness I drank up to 35 litres of water a day (yes honest ... 35 litres) ... and I still went through kidney failure and needed a transplant ... and I still drank over 4 litres a day whilst on dialysis …
(and I had greasy skin as a teenager ... so that one about drinking lots of water will stop greasy skin is cobblers too!!)

but …………
despite all this …

I also remember the person who came to this Board (the original one) and asked if a cough was a sign of kidney failure …
oh what derision that man had from us ‘all knowing’ … the ‘been there done that AND had it FAR WORSE than anyone else’ …the ‘OMG don’t you know this forum is for people with REAL illnesses’
the fella was given a kidney by his son a couple of years further down the line … and despite our original derision he was a really helpful member here on the Board

and Cherries …
yes someone suggested cherries as a helpful gout cure/reductor …
(oh you can hear the derision now)
but I looked into it and yes … I reach out for cherry juice first before any tablet if I can feel gout coming on …
(but then I can down a carton of cherry juice whilst your still getting the cap of yours!!)

so …
I hope that this brings an end to people having hissyfits at each other … if not I shall just remove any similar posts ... (don't I just LOVE being a Mod!! 8) )
please think before you type …
(something I wish someone had told me before some of my posts)

oh and if you REALLY want to know …
the only thing I havent been able to find out if it works or not …
(despite my many MANY emails to the man after his offer he posted on this forum) ….
naked pics and videos of Skakira …
so if anyone can help me on this one … I am more than happy to offer myself up as a medical guinea pig!!

and for the many … many … MANY more dodgey remedies that will be posted on this forum …… ImageImageImage
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Re: How I cured my glomerulonephritis

Postby Dixie1 » Tue Mar 24, 2015 2:39 pm

Well said Rik. I wanted to say something on this last night but couldn't think how to say it without inflaming things further.

I do want to say however that I believe we should all be entitled to put forward our thoughts and ideas etc without fear of being shot down in flames. At the end of the day, anything inappropriate will presumably be removed and as for other stuff, well no one is forced to follow the advice being given, or even to read it if they don't want. I have read some stuff on here that, after reading, I have concluded is a load of crap, but nevertheless I was (and will continue to be) interested to read it.

Lively debate is great but, as we are all individuals, we need to show tolerance and respect for one another.
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Re: How I cured my glomerulonephritis

Postby foam » Wed Mar 25, 2015 3:49 am

The thing is kidney disease is mostly a side effect of an autoimmune or other type of disease (most of the time). So for most people that's the thing you need to find out about and treat/fix.

For me it started with celiac disease, then quite bad gut damage sent my immune system out of control, that's very common, it's usually the starting point for other autoimmune diseases, Hodgkin's and other lymphomas just for starters. In my case the extreme immune system action errodes the kidneys, it had been ongoing for over 20 years but only recently got out of control. My kidneys were dropping a lot with every test in the end so that's when I had to start the tacrolimus. If I eat any grains or grain oils just like everyone else with an autoimmune disease I go backwards not forward.

So I'm not directly saying do this and you'll fix your kidneys but its well known with anyone winning against an autoimmune disease that grain free is the way to go. Doing this kind of thing subdues the inflammation and autoimmune disease and takes the load off the kidneys which then gives them a chance to recover.

I'm lucky to by on tacrolimus because very few people get the chance to take it pre transplant for immune system disease, its still more or less being trialed for those. Im tapering off the drugs slowly (slow over a period of years). But theres no signs of things losing control again so far. In myself I can tell by the lack of pain and general feeling in my gut that I'll be cured and won't need the drugs again once the taper is done.

I was having blood tests every few weeks for several years and tried most of the herbs etc and I could see what worked a bit and what didn't. The only things which made a big difference on blood tests for me was ginger, fennel and beetroot. Ginger is a known immunosuppressive agent anyway as is astralagus.

Large doses of Vitamin d made a much bigger gain than the herbs I tried but what I didn't try over those years was a proper grain free diet, sure I've been gluten free for eight years now but it was the other grains and oils driving the gut pain and inflammation in the end.

I'm usually not one for arguing but it upsets me to see someone posting well rounded and sound advice like the original poster did and get shot down like that, if that advice doesnt help your particular cause of kidney disease fine, but it will help most people so I didn't enjoy seeing it dismissed as hocus pocus. You don't often find winners and I for one pay a lot of attention to those guys, that's how you learn.
foam
 
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Re: How I cured my glomerulonephritis

Postby Thumps » Sat Mar 28, 2015 5:44 pm

I'm completely fine with people proposing complementary therapy, but any posts that start with "medicine doesn't know how to treat..." and immediately move on to recommending unproven Chinese herbs will always arouse my inner sceptic, as will anything that promises cures, or uses lots of capital letters, or claims there's a massive secret that medics don't want us to know. Essentially, I'll side-eye any content that discourages tried and tested treatments that have been proven to work in favour of alternatives that have not been proven to work or have been proven not to work (spot the Minchin quote).

I got a lot of benefits from acupuncture while I was in serious ESRF before my transplant, although I've no understanding of the treatment; I was willing to try anything for an improvement on top of what was already being done, not instead of. There's much to be gained from such complementary therapies - hell, if you want to try homeopathy and can afford it, fill yer boots! Just not at the expense of conventional medicine.

*shrug* I suppose the OP lost my trust early on with the phrase:
In that time I went from a urine protein/creatinine level of 595 to "undetectable"; symptoms vanished fairly early in the piece.

Even healthy people with excellent function don't have undetectable creatinine. *makes familyfortunes eh-uh noise*
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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Re: How I cured my glomerulonephritis

Postby johnmac11 » Mon Aug 31, 2015 4:50 am

Thanks Margaret - wherever you are. (I got your reply by email, but can't see it here.)

I remain happily well. Since posting I've found others who have cured their glomerulonephritis in similar ways to those I used.

I don't even know what embryonic and cord blood stem cells injections are, so can't give any opinion there - tho they're not methods that would attract me, subjectively.

I'm sure you can get there with some persistence.

John
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Re: How I cured my glomerulonephritis

Postby foam » Tue Sep 01, 2015 11:24 am

My egfr dropped to 40 after my last post so after reading a bit on fructose and other sugars damaging kidneys and the prospect of a biopsy in my near future I went on a almost zero carb reaserch type ketogenic diet,. I got the egfr to 90 after 3 weeks and its remained there. I got off the tacrolimus after the recovery too. Im still on prednisone and still have a low level of disease but doing fine. Very very tough diet though. Like really tough, im practically eating fat only with some meat and green leaves, my pulse runs about 20 beats higher than normal when in ketosis and your thoughts change but you get used to it. Been doing this for 4 months with one short beak where i carbed up for a tournament. My other bloods are the best theyve been in 10 years but its not a really fun diet ive got to admit that. Im still taking my juice mix and vitamin d.
foam
 
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Re: How I cured my glomerulonephritis

Postby wagolynn » Tue Sep 01, 2015 4:39 pm

Hi foam,
Have you thought this through? Go onto a diet because you have some test due... What value will the tests be after that?
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Re: How I cured my glomerulonephritis

Postby wagolynn » Tue Sep 01, 2015 8:09 pm

Hi foam,
Sorry if my post above was a bit abrupt but I was in a hurry, and shocked.

The process of diagnosing any illness is iterative, a patient may present with classic symptoms but confirmation still involves eliminating other possibilities step by step. The doctors normally can assume that all the tests are being made on the same person, therefore early test may be combined with later test in formulating a diagnosis. If a patient starts to make dietary changes in the middle of this process then the doctor is no longer treating the original patient, a bit like sending your friend for some test in your place. Diagnosing, and treating autoimmune conditions is difficult enough but I am sure, becomes almost impossible if the patient goes off, 'doing their own thing'.

Sugar and carbohydrates - Sugar, within your body, is one step away from glucose, so it can quickly (in most cases too quickly) be converted to glucose or 'fuel'. The snag is we have not evolved to manage such rapid bursts of fuel and our control systems cannot cope.
Carbohydrates are our 'natural' precursor to making fuel, and of course we need energy if only to power our breathing, heart, and brain. In short without energy we die.

Conclusion - Eliminating sugar is harmless, and possibly beneficial to our general wellbeing, eliminating carbohydrates could be dangerous, because first we use up fat stores to make up the deficit, after which, we start converting protein into fuel. We have plenty of first class protein, our muscles. The snag is, and it's a very serious snag, our hearts are just about all muscle, and nobody told our energy hungry body how important it is.

I would suggest, that we all should think carefully when posting, there may well be some very ill and desperate people reading whatever we post. In a state of mind where they are clutching at straws. I know, we all say, "be carful about anything on the internet check it's source", but desperate people may not be sufficiently wary.

I hope that serves to explain my post above, and if I offended you I do apologise.

Have you investigated the role the brain is thought to have in autoimmune conditions, though I don't think there are any firm conclusion as yet.

Best wishes
wagolynn
 
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Re: How I cured my glomerulonephritis

Postby foam » Wed Sep 02, 2015 11:25 am

Wagolyn, I'm aware the heart is muscle and I've thought about that, but you see I have a disease no one knows the cause and no adult has ever been cured of it. It's not even known to be auto immune.. Mine started at a stressful time in my life so I guess something simply broke in my dna. But.. It can certainly be made very much worse with diet.. Unfortunately I've not been able to make it very much better with diet, but slooow improvement can be had. My kidney function has historically been OK but not so great for my age. At age 30 it was about 75 and it stayed very steady there into my 40s then it started crashing and recovering a few times. Since the drugs have helped lower my IgE levels which are the main suspect in hitting my kidneys the egfr was improving slowly this last year up to 90. But I was getting lots of problems with my blood draws and my vein quality was no good anymore then the egfr went really quickly from 90 to 70 to 60 to 40 in just three months at that rate the future wasn't looking good. My tumour was returning and IgE levels were going back up.. I wasn't happy... At this time I was reading the "grain brain" book and the author talks a bit about ketones and I realised maybe this was the reason I had a near cure three year ago when I tried a egg mono diet (best I could think of to see if I was reacting to foods).. Or egg fast..? I basically only ate eggs for three weeks lol (true story) and all my blood markers became close to normal and my tumour was almost gone.. But I lost a lot of weight.. Anyway I figured well I must have been in a pretty intense ketosis during that time so I'll try do that how other people do rather that a crazy egg test. This disease come with pretty nasty skin sores too which I've have now for 25 years, every time I'm in ketosis they go away completely and at no other time in those 25 years have they gone away. So I mean there's something in this for me, I don't know what and I realise its an extreme diet but there's a few people around including a few researchers who've been in ketosis for over ten years straight.

I'm not good enough at it yet to maintain it longer than a few months because I did loose muscle last time as I was trying a not so high protien version as last time I was worried about my kidneys, this time I'm not. I'm really almost alone in this battle because there's only about 20 English speakers with the disease worldwide and non of thier doctors have much of an idea about it. So I'm kind of taking the research role by experimenting on myself, I mean most people still have IgE levels in the 3000-15,000 range (normal is under 80). Mines currently 280 and was 4200 4 years ago so I'm doing pretty well but I don't feel like I can cure it at the moment. It's just suppressed. Technically to last 25 years with so far limited damage I've done OK. Even as long ago as twenty years I'd wake up every morning so swollen in the face my nose would be twice its normal size and my eyes almost closed, I never saw a doctor for maybe ten year after that but looking back I was probably not doing so well back then.

Anyway more protein this time and we will see what happens regarding muscle loss. I will get out of the diet if I loose a noticeable amount but I'll be trying for muscle gain this time.
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Re: How I cured my glomerulonephritis

Postby wagolynn » Wed Sep 02, 2015 2:58 pm

Hi foam,
I would discuss any dietary changes with a doctor, and see if your conclusions stand up to scrutiny.

Best wishes.
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Re: How I cured my glomerulonephritis

Postby foam » Thu Sep 03, 2015 2:40 am

Wagolyn I do have the blessing of my hematologist on this diet, he doesn't think I need to do zero carb but thinks sugar free low carb (low enough to stay in ketosis) would be enough to get more sustainable results. My liver function is really good which is the organ that does most of the work on this diet so its all good. I'm having regular blood tests before during after ketosis so I have it in black and white what changes. I wasnt sure on how it would pan out with the kidney function because no one seems to agree on if ketones are good or bad for kidneys. Some research papers say it fixes them others say its harmful but there's no actual evidence I've found to prove its harmful. If you think about you can see that all Europeans were in ketosis the entire winter and spring every winter pre modern times and Alaskans were in ketosis year round their entire lives. Babies spend the first six months in.., we haven't lost the ability to do it.. I mean it only takes three days without carbs so its still pretty efficient and ready to go.
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Re: How I cured my glomerulonephritis

Postby wagolynn » Thu Sep 03, 2015 4:15 pm

Hi foam,
That sounds to be well sorted, as they say, it will be interesting to read what happens.

Good luck.
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Re: How I cured my glomerulonephritis

Postby SherryR » Tue Mar 01, 2016 6:03 pm

Thanks, JohnMac for the info. I've just recently came across astralagus and looking into it for my daughter who has Lupus Nephritis. We've been doing AIP Paleo, though we are doing reintroductions now. She's on Cellcept/prednisone/placquenil and has a serious form of Lupus. Praying for results. We have seen major improvement of her platelets after 4 years. Bit of a combo of the diet and Cellcept but higher dose of Cellcept always make her protein/creatinine levels go up, but if she goes to 0 everything else is effected. So we are doing what we can to heal her naturally while taking the drugs she needs to survive at this point. One day at a time. But glad to hear astralagus worked for you, along w/ the other therapies.
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Re: How I cured my glomerulonephritis

Postby johnmac11 » Mon Jan 02, 2017 1:07 am

foam wrote:The thing is kidney disease is mostly a side effect of an autoimmune or other type of disease (most of the time). So for most people that's the thing you need to find out about and treat/fix.

For me it started with celiac disease, then quite bad gut damage sent my immune system out of control, that's very common, it's usually the starting point for other autoimmune diseases, Hodgkin's and other lymphomas just for starters. In my case the extreme immune system action errodes the kidneys, it had been ongoing for over 20 years but only recently got out of control. My kidneys were dropping a lot with every test in the end so that's when I had to start the tacrolimus. If I eat any grains or grain oils just like everyone else with an autoimmune disease I go backwards not forward.

So I'm not directly saying do this and you'll fix your kidneys but its well known with anyone winning against an autoimmune disease that grain free is the way to go. Doing this kind of thing subdues the inflammation and autoimmune disease and takes the load off the kidneys which then gives them a chance to recover.

I'm lucky to by on tacrolimus because very few people get the chance to take it pre transplant for immune system disease, its still more or less being trialed for those. Im tapering off the drugs slowly (slow over a period of years). But theres no signs of things losing control again so far. In myself I can tell by the lack of pain and general feeling in my gut that I'll be cured and won't need the drugs again once the taper is done.

I was having blood tests every few weeks for several years and tried most of the herbs etc and I could see what worked a bit and what didn't. The only things which made a big difference on blood tests for me was ginger, fennel and beetroot. Ginger is a known immunosuppressive agent anyway as is astralagus.

Large doses of Vitamin d made a much bigger gain than the herbs I tried but what I didn't try over those years was a proper grain free diet, sure I've been gluten free for eight years now but it was the other grains and oils driving the gut pain and inflammation in the end.

I'm usually not one for arguing but it upsets me to see someone posting well rounded and sound advice like the original poster did and get shot down like that, if that advice doesnt help your particular cause of kidney disease fine, but it will help most people so I didn't enjoy seeing it dismissed as hocus pocus. You don't often find winners and I for one pay a lot of attention to those guys, that's how you learn.


Thanks foam. I think advice outside the medical box scares people, & they react with anger, as above. But many of them do come round in time.

Personally I see medicine as a failed paradigm, & thus there isn't even the possibility curing degenerative diseases by employing it.

I'm still well.
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