Advice and journey with polycystic kidney and liver

kawolela

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4
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Alberta, Canada
Hi. I've finally come to register at this forum which I've read for a year, and also tried learning with resources on the net about bioenergetics. I'm going to explain a little bit about my journey with health issues (with the intention for any advice from yours). Also my experience trying to follow some of the Peat and others advice on the net and type of diet i'm following now. Any help or advice would be thakful and surely will be revised. I ain't an expert but certainly i'm someone that likes to experiment.

I'm a male, 35 now, tall 1.90m, mexican.
At 29 I learned I had polycystic kidney and polycystic liver (my mother died of renal failure and also two of my brothers have the polycystic kidney issue). Doctors would tell me this was something that would be incrementing year by year until death (I had exams year by year and fortunately the cysts weren't growing, almost static). Since then, I've tried some alternatives, some that I think were hurtful and others more benefitial. I think this has helped me learn lots of things of nutrition and foods, and be a more compassionate person with the others. The journey had also made me realized some other stuff I have with me (emotionally and physically, and trying to make changes low step, but still, changes). On the things I've tried are ayurveda (I knew someone in the health community in my city who practice medicine with this option), unfortunately I think some of her recommendations were by far controversial nutritionally (like eating sweet industrial bread) to calm Pitta dosha, but she introduced me to milk and white sugar as benefitial. During my journey with her which lasted month consultations for a year and a half, I developed red gums (which I havent corrected), some insomnia and tiredness. I later tried some other ayurvedic options but still wasn't happy with that (felt more like an authoritarian cult), part benefitial but with nuances. Later, as I found that modern medicine and health nutrition business supossedly had a good intervention with PKD with diet, I learned about plant based keto diet strictly for this condition, I tried but started losing weigh (I've always been on the lower weight) and later pandemic times I lost more weight. I was weighing like 63KG, obviously I was depressed as I was trying a lot of stuff without the sucess of feeling better. I also tried some keto, some carnivore, herbs (a la susun weed), but didn't last those options. Finally, I think at the end of 2021 I learned about Ray Peat, started reading Danny Roddy stuff and watching podcasts from him and others. I made a consultation with a bioenergetic expert from instagram (this helped me lots with gaining weight I actually am on 76KGS) and I've learned lots of from the mineral from fruit. But as I progressed in some things I think I have some issues from that experiment. For now, I still have red gums, I started peeing a lot of times at night for months (for the past two weeks it miracously stopped, I tried Vitamin D and stopped caffeine and I think it's quite helping that issue). I also have strong edema in my eyelids. I think because of hypothirodism severe I'm not that good with Vitamin A (whenever I have liver i don't sleep well), i was having carrot salad daily but i think i have problems with carotene (when I eat sweet potatoes it confuses me a lot). Of the others fruits I ate religoiusly in my life is bananas and now I get like maniac thoughts with banana.

About my lifestyle background I'm a photographer and scene/performer/dance artist. During the recent years I was training excesive lots of time for dancing. I was having like 2-3 hours ballet class and also rehearsals (and my other chores like picking food and walking with kgs of food of distante to home), tried to live with few money (which I still do) and yep, very stressed financially every month (opportunities for artists were less during covid), and with the excess exercise and training I was so tired of trying new things. Now I quit ballet because it was too much, but in the run I lost social life, friends, opportunities for work that I stablished before I was dancing. So yeah, training has its ups and downs, but I think trying to do this while very stressed was a mistake. And the financial stuff was/is a huge problem for developing my life as an artist and as a person. For now I dont have the money to run on hormone tests or special tests, just watching my health with feelings and intuition.

Anyways, I'm going to tell what Im trying for now, maybe it will sum to your recommendations or less. What I eat now is whole milk from cow or goat, butter, apples, papaya, orange, grapes, dates, white potato, coconut oil, eggs, raw honey, white sugar (but Im not sure if it's damaging my teeths or causing me bacteria in the gut), onions, beef heart, ground beef, guava, cheese, and some mushrooms (in summer watermelon, melon also). I do bag breathing and some red light when I remember. Things I supplement sometimes with no regular frequencies are aspirine, methylene blue, cynomel, carbonate (from eggshells), salt from mortons, Vitamin D and some magnesium. Sorry to write a lot I tried to be explained as possible. Thanks for anything.
 

yerrag

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I sympathize with your struggle. I just googled the disorder. I have a condition that is said to be genetic although mine is merely cosmetic and pales with what you have. I have keloids and it's something more like an inconvenience because it is benign.

But I'd like to offer a perspective other than your condition being a genetic one, to give some hope and to open you up to a perspective that allows some hope.

It has to do with the difference between genetics and heredity. If you're tall, that has a lot to do with genetics. If you're rich, that has to do with inheritance if you're born rich.

Perhaps your polycystic condition is hereditary just as my keloid is. What is it you could have inherited? If you inherited certain microbes, could that be causing the condition? If that were the case, how would doctors approach your issue differently? Perhaps not much if you go with the dominant medical paradigm.

That is a thought bug foe you on your journey. Wish you well as you go forth.
 

mostlylurking

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Hi. I've finally come to register at this forum which I've read for a year, and also tried learning with resources on the net about bioenergetics. I'm going to explain a little bit about my journey with health issues (with the intention for any advice from yours). Also my experience trying to follow some of the Peat and others advice on the net and type of diet i'm following now. Any help or advice would be thakful and surely will be revised. I ain't an expert but certainly i'm someone that likes to experiment.

I'm a male, 35 now, tall 1.90m, mexican.
At 29 I learned I had polycystic kidney and polycystic liver (my mother died of renal failure and also two of my brothers have the polycystic kidney issue). Doctors would tell me this was something that would be incrementing year by year until death (I had exams year by year and fortunately the cysts weren't growing, almost static). Since then, I've tried some alternatives, some that I think were hurtful and others more benefitial. I think this has helped me learn lots of things of nutrition and foods, and be a more compassionate person with the others. The journey had also made me realized some other stuff I have with me (emotionally and physically, and trying to make changes low step, but still, changes). On the things I've tried are ayurveda (I knew someone in the health community in my city who practice medicine with this option), unfortunately I think some of her recommendations were by far controversial nutritionally (like eating sweet industrial bread) to calm Pitta dosha, but she introduced me to milk and white sugar as benefitial. During my journey with her which lasted month consultations for a year and a half, I developed red gums (which I havent corrected), some insomnia and tiredness. I later tried some other ayurvedic options but still wasn't happy with that (felt more like an authoritarian cult), part benefitial but with nuances. Later, as I found that modern medicine and health nutrition business supossedly had a good intervention with PKD with diet, I learned about plant based keto diet strictly for this condition, I tried but started losing weigh (I've always been on the lower weight) and later pandemic times I lost more weight. I was weighing like 63KG, obviously I was depressed as I was trying a lot of stuff without the sucess of feeling better. I also tried some keto, some carnivore, herbs (a la susun weed), but didn't last those options. Finally, I think at the end of 2021 I learned about Ray Peat, started reading Danny Roddy stuff and watching podcasts from him and others. I made a consultation with a bioenergetic expert from instagram (this helped me lots with gaining weight I actually am on 76KGS) and I've learned lots of from the mineral from fruit. But as I progressed in some things I think I have some issues from that experiment. For now, I still have red gums, I started peeing a lot of times at night for months (for the past two weeks it miracously stopped, I tried Vitamin D and stopped caffeine and I think it's quite helping that issue). I also have strong edema in my eyelids. I think because of hypothirodism severe I'm not that good with Vitamin A (whenever I have liver i don't sleep well), i was having carrot salad daily but i think i have problems with carotene (when I eat sweet potatoes it confuses me a lot). Of the others fruits I ate religoiusly in my life is bananas and now I get like maniac thoughts with banana.

About my lifestyle background I'm a photographer and scene/performer/dance artist. During the recent years I was training excesive lots of time for dancing. I was having like 2-3 hours ballet class and also rehearsals (and my other chores like picking food and walking with kgs of food of distante to home), tried to live with few money (which I still do) and yep, very stressed financially every month (opportunities for artists were less during covid), and with the excess exercise and training I was so tired of trying new things. Now I quit ballet because it was too much, but in the run I lost social life, friends, opportunities for work that I stablished before I was dancing. So yeah, training has its ups and downs, but I think trying to do this while very stressed was a mistake. And the financial stuff was/is a huge problem for developing my life as an artist and as a person. For now I dont have the money to run on hormone tests or special tests, just watching my health with feelings and intuition.

Anyways, I'm going to tell what Im trying for now, maybe it will sum to your recommendations or less. What I eat now is whole milk from cow or goat, butter, apples, papaya, orange, grapes, dates, white potato, coconut oil, eggs, raw honey, white sugar (but Im not sure if it's damaging my teeths or causing me bacteria in the gut), onions, beef heart, ground beef, guava, cheese, and some mushrooms (in summer watermelon, melon also). I do bag breathing and some red light when I remember. Things I supplement sometimes with no regular frequencies are aspirine, methylene blue, cynomel, carbonate (from eggshells), salt from mortons, Vitamin D and some magnesium. Sorry to write a lot I tried to be explained as possible. Thanks for anything.
First off: @charlie !! This blankity blank snow makes it impossible to read anything! Is there any way you can stop the blizzard?

Hi @cinefilo_1987, I've tried to read your post as best I can through the blizzard. I'd like to encourage you to learn about oxidative metabolism and how to improve it. Thyroid is key and you're post shows that you may be hypothyroid. Another important thing to consider is thiamine and if you possibly have a deficiency in that. Athletic people like dancers are more susceptible to a thiamine deficiency. Consuming much white sugar would make a thiamine deficiency worse, as would drinking coffee.

I'd like to suggest that you get your thyroid tested (blood work), stop the white sugar, and cook the apples before eating them. Your diet looks pretty good to me, except for the additional white sugar. Your body's thiamine supply needs to be adequate for the amount of carbs eaten or you'll wind up with a thiamine deficiency. The thyroid needs thiamine to do its job of making thyroid hormone. You need both thyroid hormone and thiamine for oxidative metabolism.

some links:
research Hypothyroidism via this link: PeatSearch: a Ray Peat-specific search engine - Toxinless Use the cell that omits the forum in the search (on the left).
Start with this one: Thyroid: Therapies, Confusion, and Fraud
Here's a collection of Ray Peat quotes on Thiamine: Ray Peat On Vitamin B1 - Thiamine
info on thiamine and athletes:
about thiamine:
 

charlie

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OP
kawolela

kawolela

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@mostlylurking I've heard the term oxidative metabolism but will catch it and read again. I have some thiamine supplement (it's B1 100mg, B6 5mg and B12 5mcg) but I heard it's best to take it alone without the others, not sure. I didn't know about white sugar and caffeine affecting thiamine, i will revise it also (but certainly I think diuretics like caffeine and taking kicarbonate soda was taking me to peeing all night long, this has stopped fully just by entering winter season). I started white sugar when I was introduced to ayurveda (four or five years ago) and started caffeine like in 2017. Cacao could be damaging also? Thanks for the resources, i'll read it on the week :)
 

yerrag

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I can understand the reticence. Being that this forum is mostly metabolic in its approach, most approaches are confined to a straight and narrow path relating to metabolism.

Just as conventional agriculture is confined to an NPK (nitrogen, phosphorus, potassium) to produce foods lacking in nutrition, so is this approach.

The habit of doubling down on what doesn't work without realizing it is the bane of making oneself heal, and can consign one to a lifetime of fruitless searching, as I bear witness to my eldest sister's experience. Sadly, realizing that will come in her own time, not mine.

The soil is not just dirt plus minerals. It has to be a living soil, filled with microbes that enrich the plant, and the fruits of that plant become more life-sustaining and giving. Just as our body needs a balance of microbes.

With an imbalance, one knows what it can do to the gut. We should also view that to be the case with what is internal to us, the external being the gut. Yet we don't.

So while thiamine may work because someone found he was helped by it greatly, and may be worth considering, one should be open-minded also and consider other perspectives.

It isn't the strength of this forum however, and Ray Peat only offers a cursory mention of microbial balance. But his view of an organism as dependent on a vital life force, as opposed to a reductionist mishmash of incoherent parts, should support a contextual approach to incorporating ideas that jive with bioenergetic principles.

Unfortunately, no one can be an expert on polycystic kidney disease but the one who has it. I doubt this forum would offer a silver platter solution, but I hope OP be resourceful enough to heal and become the forum's expert on healing from polycystic kidney disease.

Godspeed!
 
OP
kawolela

kawolela

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Alberta, Canada
@yerrag Yep, i aint looking for an expert for this, i understand that. Im not into the lets fix this solution. what i want is to function better while having this or the other symptoms i mention, pkd is not the core. Im open minded of other approaches as well. Thanks :) whats OP?
 

yerrag

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@cinefilo_1987 OP refers to Original Poster of the thread.

Some cysts or tumors are microbes being encased in fibrous tissue as the body's way of trapping microbes resistant to being killed. My keloid is one. A cousin had a tumor in his lungs and the tuberculosis bug being cell wall deficient makes it more resistant, and it developed in a cyst. I have temporal arteritis, same story.

Trapping the microbes keeps them from spreading. But the fibrosis when it gets large presents a growing risk.
 
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