beetroot juice

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marielo...@gmail.com

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Apr 1, 2021, 10:18:02 AM4/1/21
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i have super low haemoglobin, i even got Epo, im supposed to take it evey 2 days but i am 1. scared of the entire needle thing and 2. very unhappy that it raises blood pressure as the most common side effect and indeed, when i had it in the hospital my bp rose and because i had high potassium in the blood (probably due to a stupid misktake of mine taking Zeolite detox product 2 hours before the blood draw, this product can raise serum potassium in kidney patients) they said i cant have ARBs any more and gave me calcium channel blockers, with the major side effect, also i can confirm the patient in the next hospital bed had the same, water collecting in the legs (Edema) very badly which stayed with me for a good week after having stopped taking them, My legs were swollen full of fluid out of all proportions something i have never previously experienced. I never want to experience that again and so decided i can not take these calcium channel blockers. I told  my doctor of my issues but he told me to keep taking them they are a good medication. no way. for this reason, i am trying to juice beetroot daily instead as this is supposed to increase oxygen levels, haemoglobin, iron and reduce blood pressure. Only after 2 weeks of this daily beetroot juice, im having now pain in my kidney and am wondering if it could be from the beetroot juice as its high in oxalates ? the pain is quite bad today such that i think i will try leaving the beetroot juice out for a day and see if the pain reduces, it feels like my kidney is all swollen up. It could also be because ive been trying to increase blood building foods to try and correct my anemia, so even though i have eaten fully vegan the last several years, i introduced a small amount of animal products - eggs, butter, yoghurt. Is that possibly counter productive or worth a try to address my severe anemia with haemoglobin at 7.0. My iron interestingly measures normal at around 60 ish.

thank you for any advice !

Louise

PKD Diane

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Apr 1, 2021, 1:31:12 PM4/1/21
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I think if this were me , I would go for the EPO. Just ask the nurse who gives it to you:
Did the EPO come to room temp
Did she change needles from drawing It up to injecting
Can she give it slowly

I would not take beet juice. You have to see what it does to you. Beets are high in oxalates. 
And more?
Sent from my awesome Gold iPhone 12

~Diane


On Apr 1, 2021, at 4:18 AM, marielo...@gmail.com <marielo...@gmail.com> wrote:

i have super low haemoglobin, i even got Epo, im supposed to take it evey 2 days but i am 1. scared of the entire needle thing and 2. very unhappy that it raises blood pressure as the most common side effect and indeed, when i had it in the hospital my bp rose and because i had high potassium in the blood (probably due to a stupid misktake of mine taking Zeolite detox product 2 hours before the blood draw, this product can raise serum potassium in kidney patients) they said i cant have ARBs any more and gave me calcium channel blockers, with the major side effect, also i can confirm the patient in the next hospital bed had the same, water collecting in the legs (Edema) very badly which stayed with me for a good week after having stopped taking them, My legs were swollen full of fluid out of all proportions something i have never previously experienced. I never want to experience that again and so decided i can not take these calcium channel blockers. I told  my doctor of my issues but he told me to keep taking them they are a good medication. no way. for this reason, i am trying to juice beetroot daily instead as this is supposed to increase oxygen levels, haemoglobin, iron and reduce blood pressure. Only after 2 weeks of this daily beetroot juice, im having now pain in my kidney and am wondering if it could be from the beetroot juice as its high in oxalates ? the pain is quite bad today such that i think i will try leaving the beetroot juice out for a day and see if the pain reduces, it feels like my kidney is all swollen up. It could also be because ive been trying to increase blood building foods to try and correct my anemia, so even though i have eaten fully vegan the last several years, i introduced a small amount of animal products - eggs, butter, yoghurt. Is that possibly counter productive or worth a try to address my severe anemia with haemoglobin at 7.0. My iron interestingly measures normal at around 60 ish.

thank you for any advice !

Louise

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Marie Louise

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Apr 1, 2021, 1:35:29 PM4/1/21
to Diane Smith
Diane, 

I have bought a lot of beets in preparation for my daily beet juice therapy.. can i still use the beets otherwise, say if i cook them in water and discard the water or steam them would that reduce the oxalates ? i don't know if it still has all the beneficial effects on the blood though if i prepare them in that manner..

Louise

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PKD Diane

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Apr 1, 2021, 2:28:41 PM4/1/21
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Beets can cause low calcium, kidney damage, kidney stones or gout. “Beetroot is one of the best ways to increase haemoglobin levels. It is not only high in iron content, but also folic acid along with potassium and fibre.“

I would not eat beets every day   EPO shots are scary. I am deathly afraid of needles but learned over the years to relax the muscle, not to tense up when receiving a shot.  This helps. 

When you cook beets you reduce the betalains and other nutrients like vitamin C because they're sensitive to heat and high temperatures. It's best to steam beets for less than 15 minutes or bake under low temperatures for about an hour to help
Oxalates are water soluble and can be reduced by boiling beet and discarding the cooking water.

-Diane


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~Diane


On Apr 1, 2021, at 7:35 AM, Marie Louise <marielo...@gmail.com> wrote:



Diane Smith

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Apr 1, 2021, 2:32:01 PM4/1/21
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Boiling markedly reduced soluble oxalate content by 30-87% and was more effective than steaming (5-53%) and baking (used only for potatoes, no oxalate loss). An assessment of the oxalate content of cooking water used for boiling and steaming revealed an approximately 100% recovery of oxalate losses.

Through the water away. 



Sent from my awesome Gold iPhone 12

~Diane


On Apr 1, 2021, at 8:29 AM, PKD Diane <pkd...@gmail.com> wrote:

Beets can cause low calcium, kidney damage, kidney stones or gout. “Beetroot is one of the best ways to increase haemoglobin levels. It is not only high in iron content, but also folic acid along with potassium and fibre.“

anthony...@fastmail.co.uk

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Apr 1, 2021, 3:27:11 PM4/1/21
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You only need to inject under a pinched fold of skin. Not into a muscle!

All the best Michael  

Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

marielo...@gmail.com

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Apr 1, 2021, 4:06:40 PM4/1/21
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Im not happy about the side effect of EPO increasing blood pressure as i have problems with bp meds now..

Louise

anthony...@fastmail.co.uk

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Apr 1, 2021, 4:36:02 PM4/1/21
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Your BP was only lower as you did not have much in your blood. Cells. More cells take more space.
It is not a side effect of the drug. The drug makes cells happen. 

All the best Michael 

Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

Diane Smith

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Apr 1, 2021, 7:35:49 PM4/1/21
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It’s true. I remember when I shadow my liver resection, BP was low. 


Sent from my awesome Gold iPhone 12

~Diane


On Apr 1, 2021, at 10:36 AM, anthony...@fastmail.co.uk wrote:

Your BP was only lower as you did not have much in your blood. Cells. More cells take more space.

Diane

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Apr 1, 2021, 10:23:53 PM4/1/21
to 'Diane Smith' via PKD
Dear Louise
It mades me very happy that you are eating yogurt and eggs and morel Yogurt gets the amount of dayly protein is super high

I have said this before, I think you are in trouble, Please find a doctor , a nephrologist you trust, and follow his or hers advice,

-Diane

> On Apr 1, 2021, at 10:06 AM, marielo...@gmail.com <marielo...@gmail.com> wrote:
>
>

Marie Louise

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Apr 3, 2021, 11:58:28 AM4/3/21
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Diane

i have a follow up appointment with the hospital nephrology department 3 weeks after being discharged from the hospital.. i'm just worried however, that it's too soon for taking more bloods since im so anaemic ?

Louise

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anthony...@fastmail.co.uk

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Apr 3, 2021, 12:07:03 PM4/3/21
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Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

anthony...@fastmail.co.uk

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Apr 3, 2021, 12:18:59 PM4/3/21
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I adjusted this from a post.

It explains that if you have say over twelve vials of blood taken, after a day it would be as if it had never happened to the body. Indeed it recuperates the loss in hours!

Based on my research you would have lost at most 40 ml of blood. The body can recuperate approximately 450 ml per 24 hours. So at worst case scenario it would take a little over 2 hours to regenerate all the blood lost.

Someone at say, 180 pounds has at any given time, somewhere between 12 and 15 pints of blood. Which means you have somewhere between 5680 and 7100 milliliters of blood in them. This means that each vial of blood drawn will take somewhere between 0.014% and 0.053% of your blood. 

Compare that to the 450 ml of blood they draw when donating blood. When donating, they take between 6.3% and 8% of your total blood.

 15 vials would means that they took approximately 3.4% of my blood for tests.


All the best Michael 


Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀
On 3 Apr 2021, at 5:58 pm, Marie Louise <marielo...@gmail.com> wrote:

Marie Louise

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Apr 3, 2021, 7:26:32 PM4/3/21
to Diane Smith
Michael, 

thank you that is so useful your analysis that you so much for taking the time to respond as this is really playing on my mind since being discharged from the hospital and right away, hearing the Medical Medium latest series on the blood draw, you can hear his Podcast https://podcasts.apple.com/us/podcast/blood-draw-bloodletting-vampirism/id1133835109?i=1000515198275 where he tells the world about the detrimental effects of the blood draw depleting the bodys reserves.. since my values registered worse with every blood draw, i assumed this a problem im experiencing.. if you check in the attached image, you see the progress of my haemoglobin and leukozytes decrease every time they drew more blood.. but as you say, that is far less blood loss than a blood doner would make..

Louise

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bloodsrotated.jpg

anthony...@fastmail.co.uk

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Apr 4, 2021, 2:51:13 AM4/4/21
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From the hospital teams point of view you are under care. They gave you choices and you chose Epo. Epo will if you supply the food produce more blood cells. Supply more oxygen as your red cell volume goes up. And white. Say a 15 file take will in blood volume be replaced in hours. Content, will take around one and a half days as you are mall nourished, response will be slower, marginally. The teams assumption has to be that you will be compliant , which includes eating and taking the medication and adjusting your life style to suit your recovery!
This recovery is back from malnutrition. 
I imagine that after is to consolidate that part and look at your kidneys. Which may or may not be involved. Yet to disentangle one disorder from another!

Yourself, well you need to make new decisions as what you were doing did not work.

I get an impression that the veganism you practice is partly driven by the desire not to have killed or exploit animals for food or product. 

I explored the Alkaline diet to survive PKD. The two are very different. I have no experience in malnutrition or veganism as part of having done that!

My hospital experience is from my own life in and out of hospitals since four years old. I know some ropes!

I am a happy person living, I like living, so I nearly always expect those around me too also, even if it has to touch survival sometimes! 

Good luck.

All the best Michael 





Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

anthony...@fastmail.co.uk

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Apr 4, 2021, 3:55:01 AM4/4/21
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I sampled the chaps podcast. I have come across him before now. 

I would love to feed him to my Nephrologist team. Nephrology is all about blood and piss. It the only way into the bodies data. Outside of biopsy. 

I have a friend who works for the UK blood bank and herself gives blood regularly. Giving blood is usually half a pint to a pint at a time. She administers thousands of takes.
It is not an unsafe procedure. I am sure in there, there are problems. Yet as a process it's a risk over benefit. You might need blood one day!

The thing about the immune system is if your system is attacked, you already did everything you could not to have had that happen. Even if you were not aware of it!
It's what the body does. How do you measure your current immune system?

Well, immunology uses a blood sample. Ho-hum!

So again as my GP ALWAYS reminds me, it's a risk for a benefit!

All the best Michael 




Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀
On 4 Apr 2021, at 1:26 am, Marie Louise <marielo...@gmail.com> wrote:

Marie Louise

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Apr 4, 2021, 8:45:32 AM4/4/21
to Diane Smith
Michael actually the hospital wanted to give me a blood transfusion but i was afraid it may not be compatible reading all the contra indications listed which i needed to consent to..thats why i got Epo injection instead..i didnt think further ahead to things like transplants thatif im refusing blood transfusions what about a kidney transplant - foreign blood and parts would also be entering my body..

Louise

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PKD Diane

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Apr 4, 2021, 1:19:09 PM4/4/21
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I agree with Michael.  Having made it to 74 y/o with PKD1 allele, I too enjoy living. I am on the alkaline diet with natural fasting thrown in. I am participating in Dr stubel-Weimbs diet. I take no medication except for a half tablet of keflex at night for UTI
  
Blood pressure is normal

Sent from my awesome Gold iPhone 12

~Diane


On Apr 4, 2021, at 2:45 AM, Marie Louise <marielo...@gmail.com> wrote:



Diane Smith

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Apr 4, 2021, 1:23:47 PM4/4/21
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We each must decide the best for each of us   This is what I have learned as I age. 


Sent from my awesome Gold iPhone 12

~Diane


On Apr 4, 2021, at 7:19 AM, PKD Diane <pkd...@gmail.com> wrote:

I agree with Michael.  Having made it to 74 y/o with PKD1 allele, I too enjoy living. I am on the alkaline diet with natural fasting thrown in. I am participating in Dr stubel-Weimbs diet. I take no medication except for a half tablet of keflex at night for UTI

anthony...@fastmail.co.uk

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Apr 4, 2021, 2:03:34 PM4/4/21
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The way hospitals work is the Nephrologist team headed by the surgeons triage there lists. One of the factors you might consider is compliance. In the transplant list world the operation is very expensive. The budget tight. If a candidate is not going to be compliant the team will move to better prospects. Much of the work is done preparing one for transplant. Often on dialysis!
The team only know how to do what they do. Use methods that work!
I gave my word to comply to certain drugs. Ones not on the list get vented. Like Statins, which I refuse to take again!


All the best Michael 


    

Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

Marie Louise

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Apr 4, 2021, 5:54:57 PM4/4/21
to Diane Smith
Michael

thank you for pointing out that compliance is important. I was just on the phone to my mum and she was utterly disappointed that i refused the blood transfusion in the hospital, she herself has worked in the hospital for several years as a nurse and told me the amount of preparation to match up my bloods etc they know what they are doing and all the doctors and equipment are there should anything go wrong how utterly ludicrous of me to refuse the treatment they prepared for me. Thank you for pointing that out as well, i think i need to pull myself together and stop objecting to the medication and treatments as my mum told me i have no medical knowledge but i think i know better than the hospital specialists who are there to help me. 

thank you so much Michael and Diane for your advices, never failing support and help,regardless the stupid decisions i may have made, its really truly appreciated.

Louise

anthony...@fastmail.co.uk

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Apr 5, 2021, 1:24:53 AM4/5/21
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Dear Louis

Glad your mum chatted with you.

You should not be hard on yourself for the simple reason that you just will not know how insidious being ill is with ones mind processes and judgment, until your not ill.. Hopefully you will look back with a cleared mind as you improve your situation. 
When I had anemia thinking was like mud. My memory was totally unmanageable.
All that went as my anemia did. Fortunately I have my partner, you have your mum!

All the best Michael 



Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

Marie Louise

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Apr 6, 2021, 5:30:39 PM4/6/21
to Diane Smith
Michael, 

you may be so right, thank you ! i have been making ridiculous fussy decisions confused regarding my health, like turing down treatments in the hospital, refusing medications, cancelling follow up appointments then changing my mind on everything as i realize i have no idea.. it's the anemia, it's my low oxygen levels, my low haemoglobin meaning i can't think straight..bingo !

Louise

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anthony...@fastmail.co.uk

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Apr 7, 2021, 2:39:55 AM4/7/21
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Dear Louis

I was lecturing at university when in decline, with ever-worsening anaemia. I had had to write a brief. Briefs are quite complicated. Quite lengthy. I was so unusually exhausted after. Luckily I asked for a proofread, and reading it back was as if someone, not me, had written it. 
It was all over the place. I was otherwise renowned for tight brief’s. I had acquired a ‘dyslexia’ I had never seen. 
After that, I made it a turning point. Not a lot of choice really. From that point to the resumption of anaemia would be around two to three years, which included a move to another country. By then I had stopped work to concentrate on survival long term.
Most of half that time I was aware I had impaired decision making skill. Bit of a mad man's prison!

I sort council!

All the best Michael 


PS. Tangentially. Recently in Tai Chi when doing inner exercises with muscle groups, I discovered an entire repository of stored emotions in my back muscles. These were like ones that surface when one is ill. When one guard is down. The body is an amazing place to be in!


Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

Marie Louise

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Apr 7, 2021, 6:05:42 PM4/7/21
to Diane Smith
Michael, 

oh so you were also so anaemic ? how low were your blood levels and how did you reverse it ? did you figure out the cause ?

Louise

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anthony...@fastmail.co.uk

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Apr 8, 2021, 3:00:22 AM4/8/21
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Dear Louise 
I found myself is hospital Neckar in Paris. Nephrology. I had come to see about care in France as I was about to move there. This was a recommendation from a London Nephrologist who was also helping out. He was eventually to be the doctor at the centre of the founding of the UK PKD charity which now runs!
Anyway the French nephrologist took one look at my results and gave me Epo. right then and there and a prescription for it while in France. 
I was very low, a condition the UK hospital (Brighton) seemed okay with. There were reasons to move!
He also suggested the best places to live if I wanted a TXP. People here were extremely helpful!
I maybe ought point out that my anaemia was kidney related not diet. I was reasonably nourished.

All the best Michael 



Cavalier de l'iPad:
“In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.”
Carpe diem🌀

Marie Louise

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Apr 8, 2021, 7:04:06 AM4/8/21
to Diane Smith
Michael, 

yes i need to consider this, is my anemia kidney related rather than diet ? im beating myself up about my diet but maybe the diet ts ok and it's indeed the kidney declining. Creatine is 2.4. Urea, Bun etc all worsened. Anyway, i administered my 2nd Epo shot today, got it sorted in seconds, this time i was much more aware of the benefits the Epo will bring me so i confidently stuck the thing in firmly into the thumb finger fold, but this time it all went it. I felt there was a little resistance pushing the thing in, not sure if that's normal..

Louise

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Vernita Bradford

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Apr 8, 2021, 1:16:58 PM4/8/21
to PKD
Hello Diane, where I can find the foods to eat on the Dr. Stubel-Weimbs diet?

Thank you,

Vernita

PKD Diane

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Apr 8, 2021, 1:45:08 PM4/8/21
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Dr Stubel does not give any recommendations for diet. You can. Email him for the diet. 


Sent from my awesome Gold iPhone 12

~Diane


On Apr 8, 2021, at 7:17 AM, Vernita Bradford <vroya...@gmail.com> wrote:

Hello Diane, where I can find the foods to eat on the Dr. Stubel-Weimbs diet?

jo arch

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Aug 20, 2024, 7:24:25 PM8/20/24
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Thank you all of you for sharing. You inspire me to stay on track. 

On Thu, Apr 1, 2021 at 4:18 AM marielo...@gmail.com <marielo...@gmail.com> wrote:
i have super low haemoglobin, i even got Epo, im supposed to take it evey 2 days but i am 1. scared of the entire needle thing and 2. very unhappy that it raises blood pressure as the most common side effect and indeed, when i had it in the hospital my bp rose and because i had high potassium in the blood (probably due to a stupid misktake of mine taking Zeolite detox product 2 hours before the blood draw, this product can raise serum potassium in kidney patients) they said i cant have ARBs any more and gave me calcium channel blockers, with the major side effect, also i can confirm the patient in the next hospital bed had the same, water collecting in the legs (Edema) very badly which stayed with me for a good week after having stopped taking them, My legs were swollen full of fluid out of all proportions something i have never previously experienced. I never want to experience that again and so decided i can not take these calcium channel blockers. I told  my doctor of my issues but he told me to keep taking them they are a good medication. no way. for this reason, i am trying to juice beetroot daily instead as this is supposed to increase oxygen levels, haemoglobin, iron and reduce blood pressure. Only after 2 weeks of this daily beetroot juice, im having now pain in my kidney and am wondering if it could be from the beetroot juice as its high in oxalates ? the pain is quite bad today such that i think i will try leaving the beetroot juice out for a day and see if the pain reduces, it feels like my kidney is all swollen up. It could also be because ive been trying to increase blood building foods to try and correct my anemia, so even though i have eaten fully vegan the last several years, i introduced a small amount of animal products - eggs, butter, yoghurt. Is that possibly counter productive or worth a try to address my severe anemia with haemoglobin at 7.0. My iron interestingly measures normal at around 60 ish.

thank you for any advice !

Louise


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anthony...@fastmail.co.uk

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Aug 21, 2024, 2:11:02 PM8/21/24
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Dear Louise

I caught this in the mail. I read you are reticent about injecting yourself. There is nothing to be scared of. It has been many years since did it myself now, but I was also concerned at the time. I was shown several ways to do it in different locations. Which helped me understand it did not hurt much apart from the stick bit.

On the tummy, one pinches around the midriff a good amount and injects into the pinch. Or on the thigh, there is a point which is not sensitive, same pinch and inject.
The bottom is the other target. No pinch just stick.

Fortunately, unfortunately, depending on the view, Epo is the only way can think of that works. Believe me, I tried the whole book the book of alternatives. At the anaemia stage so many balls are in the air was impressed that Epo dealt with one of them. A very important one and one which frees one up for other challenges.

I took Fudex for Edima of the legs.

I just wanted to say fear not the needle, it's very small. Compared to the Blood Take ones I still have, it is almost invisible in size, ha!

All the best Michael (twenty-years TXP)

Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀
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