Paleo Diet: Raw Paleo Diet and Lifestyle Forum
Raw Paleo Diet Forums => Health => Topic started by: Suiren on April 27, 2012, 10:23:21 pm
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I have a favor to ask.
A friend of mine just received very bad news regarding her health. She suffers from lupus and multiple sclerosis and has recently been treated for it with light chemo therapy (!!!) :(.
Her health is worsening dramatically though, especially since the treatments. Here is what she wrote:
I have had 2 rounds of chemo in the last two months. I'm in kidney and liver failure officially. My ms has gotten so bad I lose speech 3 times a week and I am frequently paralyzed. I will be permanently paralyzed within 5 years and most of my cognitive function will be gone in 1o years.
She is a mother of a 6 months old baby. It breaks my heart to think she won't be able to hold him and ultimately not even be able to be there for him anymore.
She does not know about the dangers of a SAD diet, nor the health benefits of the raw paleo diet. I don't know her very closely, but seeing this I offered advice, risking that I might be called crazy....but rather 'me-crazy, than her-sick' imo.
I would like to send her a lot of good info about how she could better her health with dietary changes. Links, experiences and info from your side, studies, stories about people that did get better...anything helps.
I am also asking for some info that would convince a newbie. I am sure she will be worried about getting sick off of raw food etc. Or she may not believe it because the standard nutritionist will give completely different advice.
TIA!
Suiren
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I have friends and relatives who have MS and I have found it just about impossible to try to explain the advantages of changing anything, diet or otherwise.
Human nature I guess. I feel for you as I have been there. It really hurts to watch people suffer.
I am reading lots about Rife devices for solving the immediate problems but again they have no interest in anything but drugs and surgery.
Having said all this I do have one friend who is 'NI&S' positive. (New information and suggestions) I will do what I can. I have explained some dietary stuff to him but changing oneself has to come from within.
Are you familiar with "New German Medicine" Dr Hamer?
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That is very sad. Kidney and liver failure have a poor prognosis without lupus and MS. She probably needs to be hospitalized to survive that. I don't know that she has 5years or 1. Chemo is used to treat autoimmune when "less invasive" methods fail.
People aren't told they are dying until they have days left. They keep making money off the treatments. Maybe that is the incentive, or maybe they want to be seen as the savior not the bearer of bad news. Without taking any remaining hope she have, advise her to plan the best future she can for her baby, immediately.
As far as RAF what does she have to loose at this point.
Young people are amazing they can return from deaths door. Hopefully they will stop the chemo that probably puts her into organ failure. :'(
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raw-al
I never heard of rife devices. What is it? A type of treatment?
I think you are right, they really want to make money off of all the treatments too.
I never heard of Dr. Hamer either, what does he teach?
I have one friend who has made some dietary and life style changes and somewhat improved. My husbands aunt on the other hand does not really seem to have the will power to change anything, even though she understands how a SADiet is bad. It is sad.
Adora
I really hope her condition is not as bad and doctors are being overly dramatic. I have dealth with doctors like that. They scare you into treatment and drugs.
She is in her early twenties, so I am sure she has good chances at bouncing back. I mean any improvement would help.
What I also wonder, if she was to change her diet, what should she do about any medication? I think chemo can safely be stopped, but I think at this point she needs meds to function.
I was thinking of maybe suggesting alternative treatment. Maybe there is holistic approaches for the meantime? I don't know much about it. I never experienced severe healrh problems to the point where I could not function without help.
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www.rifeforum.com (http://www.rifeforum.com)
http://www.rifeforum.com/forum/showthread.php?t=209 (http://www.rifeforum.com/forum/showthread.php?t=209)
This last thread has some info on Rife/MS but essentially what I have heard from two people who own and use them on clients/neighbours in two places in the world, MS can be treated and the rate of success depends on the period of time the person has had the problem. If they are gotten soon enough complete recovery is possible.
I am looking into getting one of the devices that I heard about from a friend.
If you go to this http://www.rifeforum.com/forum/forumdisplay.php?f=12 (http://www.rifeforum.com/forum/forumdisplay.php?f=12)
They will explain how it works in the FAQ.
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I have friends and relatives who have [illness] and I have found it just about impossible to try to explain the advantages of changing anything, diet or otherwise.
I am reading lots about [non-mainstream-medicine method] for solving the immediate problems but again they have no interest in anything but drugs and surgery.
Human nature I guess.
Social programming.
Unless the person is willing to do EVERYTHING you tell them, you have to simply accept that they will do what they want to do and believe is right.
Unless the person at least SPECIFICALLY ASKS YOU FOR YOUR ADVICE /stance/opinion, there is nothing you can do.
And in that case, it's best to let it go.
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I created an MS forum to collect success stories and info on MS here:
http://www.rawpaleodietforum.com/health/multiple-sclerosis-info/msg81861/#msg81861 (http://www.rawpaleodietforum.com/health/multiple-sclerosis-info/msg81861/#msg81861)
If the TED Talk video of Dr. Terry Wahls alone doesn't convince her, I can't imagine what will.
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www.rifeforum.com (http://www.rifeforum.com)
http://www.rifeforum.com/forum/showthread.php?t=209 (http://www.rifeforum.com/forum/showthread.php?t=209)
This last thread has some info on Rife/MS but essentially what I have heard from two people who own and use them on clients/neighbours in two places in the world, MS can be treated and the rate of success depends on the period of time the person has had the problem. If they are gotten soon enough complete recovery is possible.
I am looking into getting one of the devices that I heard about from a friend.
If you go to this http://www.rifeforum.com/forum/forumdisplay.php?f=12 (http://www.rifeforum.com/forum/forumdisplay.php?f=12)
They will explain how it works in the FAQ.
Thank you I will look into that!
I created an MS forum to collect success stories and info on MS here:
http://www.rawpaleodietforum.com/health/multiple-sclerosis-info/msg81861/#msg81861 (http://www.rawpaleodietforum.com/health/multiple-sclerosis-info/msg81861/#msg81861)
If the TED Talk video of Dr. Terry Wahls alone doesn't convince her, I can't imagine what will.
I hope it will, thank you too!
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Actually I started a thread on MS on this site at some point in the past.
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In an acute situation of lupus-associated kidney failure immunosuppressants steroids such as prednisone are the most effective treatment of choice. After the acute phase then immunosuppressants are used.
Personally, if I were in ur friends situation I would take the steroids and a raw paleo diet right away. Theoretically steroids could be tapered down as her lab tests and symptoms improve. I
believe going raw paleo alone would not work immediately which could be fatal in acute kidney failure due to lupus. However, I do believe this diet is probably the most conducive to healing.
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There is some data showing that a cooked, palaeolithic diet helps with MS a little:-
http://www.livestrong.com/article/486060-paleolithic-diet-ms/ (http://www.livestrong.com/article/486060-paleolithic-diet-ms/)
Not many palaeodiet studies, though, and none on MS:-
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2724493/ (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2724493/)
Ah, I found what I wanted. OK, raw-al is right, she has nothing to lose, so is more likely to go in for this sort of diet. Read this page:-
http://www.cumc.columbia.edu/publications/in-vivo/Vol2_Iss05_mar12_03/index.html (http://www.cumc.columbia.edu/publications/in-vivo/Vol2_Iss05_mar12_03/index.html)
Basically, what it states is that advanced glycation end products(which are mostly created by cooking) greatly exacerbate the symptoms of multiple sclerosis. Advanced glycation end products, polycyclic aromatic hydrocarbons, nitrosamines and heterocyclic amines, all created via cooking, are hefty inducers of inflammation, so this is not surprising.
I suggest she gets rid of the chemo completely.This diet, by its very nature, avoids inflammation-inducing factors. She should aim for the best(ie raw wild game if at all possible). She would also benefit greatly from "high-meat" - tell her to try it as soon as she gets used to the taste of fresh, raw meats(that is, unless she really is at death's door, in which case she might as well try it immediately).
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With all due respect, in the case of lupus, If an acute liver or kidney failure is happening I believe that a radical change in diet alone may be fatal. Although steroids and any chemo may be harmful, in the short term, steroids can be life-saving even if it's a short course that's given. But yes, I will still do a raw paleo diet.
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Kidney failure complicates EVERYTHING. When your kidneys go the body can't balance minerals well. Too much potassium in the diet can stop the heart because the kidneys can't get rid of it. Not enough sodium and she can go into seizures because the body can't hold onto it etc. etc. An example of a danger is that meat and dairy are extremely high in potassium. Chemotherapy on top it stops the other organs from working too. Without liver function she won't be able to digest fats. It's all so sad that something like this can be prevented.
At this point in the game everything is so delicate that each and every change has to be examined and weighed ever so carefully while consulting with her doctors and once you are consulting with doctors trying to do anything holistically and logically can be a real challenge. You have to have true belief and an iron will to do that and have a tremendous desire to live and dedicated advocates by your side.
My first question would be - once the kidneys are no longer functioning is there ever hope for them to return to function? Has anyone ever come back from dialysis? If not, I hate to say it, but the question becomes one of quality of life and the decision whether or not fighting one's way back is really possible or desired. Living on dialysis is no fun and the chemo is going to make the fight back an extreme process as her immune system is going to be destroyed.
Fighting could take what energy and time she has left that she might instead want to be using to bring her life to closure the best she can and not allow her to spend every last moment exactly how she most would like to spend it.
If she herself wants to fight there are many ways to be of assistance, but if she is not asking for help in staying, healing, coming back and accepting the limitations that she will now have before her then you might not be doing her a service offering her information.
I'm so sorry that this happened and for the sadness. :(
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for all the money she is spending on hospital bills she should have a person knowledgeable in wholistic health in her house to attend to her, to make her nourishing broths and juices and teas and so that she can rest, have NO responsibilities, get sunshine, watch her child but not necessarily have to spend a lot of energy caring for her child and let her body rest and regenerate...
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Sadly Jessica, most insurance will pay for hospital care but will give nothing to help her in her home or to provide holistic care except maybe if she can find a holistic MD that takes her insurance. Remember - she mentioned paralysis which necessitates lots of nursing care which can be exceedingly expensive if not covered by insurance. But if she has any savings at all, I agree with you that home is a better place to be in times like this if possible. Again though - she will have to consult with her doctor about what kinds of foods she will be able to eat at all with kidney failure and liver failure. Bone broth is filled with lots of minerals - part of the reason it is so very healing usually - but kidney failure is a whole different story. If the broth won't kill her quickly - then I agree.
If it were me I would want to be at home if there was any way to get the basic care necessary - but after what I went through with my mother - honestly - I wouldn't put my family members through taking on the care of me in paralysis.
This is all so late in the game! I wish we could have all helped her just a little bit earlier before chemo and the destruction of her organ function and before paralysis set in.
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vitamin c seems like something that would be beneficial to her at this time, it is a major proponent of the kidneys(and adrenals, which are probably very low functioning at this poin) and will help to balance the salts in her body as well as rejuvenate the liver.
its pretty much at this point she just needs to stop all medical intervention and start the process of letting her body know it is okay to stop, relax, regain strength for repair....etc... i dont think the medical community at all understands that the constant testing, visits, the whole environment and atmosphere of hospitals, the urgency of medicine these day is so stressful that it is no help and only stresses a body further! she is paralyzed by fear, worn out and drained completely and probably angery that this is all happening , there is no way she should feel obligated to anyone but herself and her help and not feel the least bit guilty about being selfish enough to get herself healthy. she should use all of her energy to be healing in her own home, it might take a month before she can do much besides lay in bed and walk to the toilet and outside to take in fresh air and sunshine, it may be a year before she is capable of more, but real healing takes time
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The big problem Jessica is that we don't know if she can walk to the bathroom or even get out of the bed to a bedside commode or not. That might be the thing that could keep your good advice from being able to be followed. She also might need dialysis machinery to stay alive.
What I see happening so often is that no one explains to the sufferer that there is really nothing they can do for them - just like Adora said. Livers can regenerate - I've never heard of a kidney doing that before though after it has stopped functioning. It's not that I'm saying it's impossible because I don't know - but what I AM saying is that the medical profession is probably not being honest and open with her about her prognosis if she stays working within that paradigm. Kidney and liver failure are considered to be end of life scenarios where hospice becomes involved. There might not be hope for regeneration in another paradigm or there might be - but there is no hope staying with the the modern medical paradigm. She might not understand that yet. But what we have here is a well-meaning person asking advice for another person that is not a close friend and the sufferer has not sought out the advice herself. There's a reason no one wants to tell her what the real deal is. Kidney and liver failure and paralysis along with chemo - that's usually not long for this earth. She might be thinking she has years, but if she really understood that medicine and doctors haven't been able to do much and will be able to do less to keep her alive for much longer she might be willing to step out of the medical box she is in.
It's often like that - people will do all the modern medical cures for cancer and wait until the very last minute when it all fails to finally say ok - I'll try something else. Then their chances of survival are knocked down by at least 50% BECAUSE of the medical treatments. Once organs stop working - dam - that's when it's usually too late for even the best cures to work. Even if all the cancer is gone a human needs to have functioning kidneys, liver, heart etc. to survive -- but there is literally nothing for her to lose by trying something - anything different. She might not understand that. I would hate to be the friend who would have to explain it to her though.
At the very least - why would she want to spend her last days, weeks or maybe months in a hospital being poked and prodded by strangers. If she can swing it - home is the place to be.
70% of Americans say they want to die at home but 90% of us die in the hospital, most in the ER. If there is any hope - natural foods, peace etc. at home is where it's at.
Juicing would give lots of nutrients with less stress on the organs as long as the minerals were not a problem that would kill her quickly. I would also probably suggest the Budwig raw milk cure to by-pass the liver for fat absorption to the cell if the potassium levels of milk weren't too much a problem. Once chemo is done there are ways to help the immune system regenerate over a period of years and things to help the liver regenerate. There are many things that could be tried.
But all this is moot if her friend does not understand her real situation.
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really appreciate everything in the post above dorothy, and my love goes out to your friend
its sad how many people lose quality of life for quantity of life these days, i hope she spend as many seconds and years that she may have left happy and hopeful and with those that she loves
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AV's specific recommendations for MS: complete avoidance of cooked foods; lots of raw dairy, especially raw butter; stone-pressed olive oil with plenty of raw meats (chicken, beef, seafood); avocados and raw eggs daily; 2 glasses of natural mineral water a day and a drink made of 1 cup cucumber, 4-6 tablespoons raw coconut cream and 1 tablespoon unheated honey.
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FoxWoman - those sound like wonderful suggestions in general. I just wonder if someone in liver failure could possibly digest so much fat.
I would add to your suggestions a warning to Suiren to talk to her friend about how much and what kinds of fats she could handle in liver failure. She would need to consult with her hepatologist on that and her nephrologist on the minerals for the kidneys.
All that seems so healing in general doesn't it though. I bet that would help with a lot of diseases.
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Yes, Dorothy, since here MS is already very advanced and is complicated by chemo, and kidney and liver failure, the situation is very bad. However, I doubt that any conventional hematologist or nephrologist will ever agree with a raw nutritional approach, especially the one high in fat. Modern medicine just does not incorporate raw foods cures, only chemical drugs.
I do not see any suggestions in AV's book for kidney and liver failure, however, he has suggestions for cirrhosis of the liver. To clean and rejuvenate the liver, he recommends plenty of raw tomatoes and lemons, combined with eggs; unheated honey; raw coconut cream with cucumbers; and raw meat at least twice daily. If lacking appetite for any food, he suggests his famous raw butter / raw honey mixture under the tongue and a little fresh parsley or ginger to stimulate appetite.
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Sorry for replying a bit late. I have been trying to get in touch with her, but her family is moving into a new home.
First of all - I don't understand the medical terms that my friend used...as in I don't know what kidney failure would exactly be like. But I do know she is able to walk and rest at home. She has said to be very tired, feels sick, vomits, but she is able to move around some.
Maybe the doctors have overly dramatized her diagnosis to scare her into more treatment and she is only at the verge or beginning of kidney and liver failure?
If she herself wants to fight there are many ways to be of assistance, but if she is not asking for help in staying, healing, coming back and accepting the limitations that she will now have before her then you might not be doing her a service offering her information.
I asked her if she would be willing to try something else and she said at this point she wants any help she can get. I do think she would want to fight, for her son and her husband. I know I would never give up and just refuse to leave them behind.
A different type of treatment can't be any more strenuous than the existing one right? So maybe she is able to power through it.
Thank you for all your advice Dorothy, and considering the effects of a change of diet too. It makes sense that she can not just switch to raw paleo diet and forget about it.
Treatment: Her husband is in the military, so they must be using Tricare. I know Tricare can allow you to go to out of network doctors if you can not find a physician within the network. But I am really unsure about holistic treatment.
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Not meaning to be cynical but if you tell any doctor you are going to be eating raw anything they will have you committed to an asylum for the criminally insane (OK..... ;D so I'm exaggerating a bit)
Personally I would try small amounts of these suggestions to see if they were a good idea, increasing the amounts, as they seemed comfortable.
Asking advice from specialists is like asking the blind to read. They have no real clue as to the effects of raw foods as they are not used to it.
Also they have virtually no training on diet. They only know about the odd paper that they happen to read on the subject. Papers are typically done by people who are trying to sell something like drugs 'frinstance. Call me paranoid.
Raw fats do act differently on the body than cooked fats, so their info would be based on cooked.
I have a relative who has MS and a friend who also has MS. One is painfully thin and the other is morbidly obese. It's a strange disease.
There is some evidence that diet drinks may trigger it.
I will try to photocopy page 548 of 'The Rife Handbook, of Frequency Therapy & Holistic Health' by Nenah Sylver, PhD. It's an oversize 700 page tome so it may be difficult to scan.
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Oh no, I did not mean to say she should tell any doctor about the paleo diet. -X
I was just referring to the conversation about how conventional insurance does not cover naturopathic and holistic treatments.
She might want to look into some sort of alternative treatment to cope with pains and other problems while she is changing her diet.
I am by no means recommending doctors to her. I had my share of doctor nonsense, got really tired of it, got off meds on my own account and now I'm better. :D
I agree they are trying to sell drugs...or well the makers of the drugs are trying to sell them through doctors which believe drugs to be the only way...
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That's really good news that the picture is not as bleak as it might have sounded! She can walk around and not in paralysis and can be at home and not in hospice. That's very good. Even better is that she is open to trying new things. Excellent.
Doctors can be used and serve you well if approached with common sense and in the proper way. For instance if the liver is not functioning correctly they might be able to tell you how many grams of fat can be consumed at one sitting without creating serious problems. Then - she can go and eat the kind of fats that will help her instead of hurt her. A kidney doctor can give specific recommendations on how much potassium and salt for instance her kidneys will be able to handle/need and with that information appropriate amounts of particular raw foods can be chosen.
People tend to treat doctors like gods instead of consultants. Just because someone gives you advice doesn't mean you have to take it - but often getting advice can help to make better decisions. With my Mom I found that the more doctors I talked to the better off I was because they often didn't agree or would give me more information that I then could use to make the right decision. The times I got in the real trouble were when I just trusted one and didn't do my own research or get a second opinion. That's what really did the damage. Better to avoid them at first completely by eating right but once you are already in that system, then the key is learning how to use the system for benefit instead of the harm it usually does. With liver and kidney failure and being on chemo - doctors are simply now going to be part of the equation and really need to be. The key is finding ones that help instead of hurt. First thing I personally would do is get rid of the chemo doctor totally myself. I learned enough to know that if the disease doesn't kill you chemo will.
It's important to learn how to think for oneself and how to ask the right questions. Instead of asking what should I be eating ask for real specifics and then take it all with a grain of salt, think it through and ask other doctors and health professionals until you feel strongly that what you choose makes good logical sense and feels intuitively right.
Not all holistic doctors are worth talking to either. I went through 4 before I found a good one. You can judge them by doing research and seeing if what they are saying to you makes sense to you.
There are some doctors that are much more open to alternative therapies and diets and most doctors will know which doctors those are. I found one foot doctor who was cool so I ask them what other doctors were like them and which doctors their patients said were good and from that one foot doctor I found the best nephrologist maybe on the planet and a superb general MD who looked at all alternative therapies with openness but scrutiny at the same time - which was a great fit - and he was also an absolute sweetheart. Together we took Mom off of 1 medication every three months. He was gleeful watching all those unnecessary meds go off the list. He turned us onto all sorts of foods and supplements from reading and evaluating the data on what has been most proven to work for specific situations - but mostly - he respected our choices.
If your friend wants to fight Suiren - maybe perhaps she should join this conversation. I've personally seen people come back from terminal illness as I'm sure many people here have too - so maybe we can help her to gain more hope and offer our support.... if you think that would be a good idea.
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Another resource on MS is this site: http://paleodiet.com/ms/ (http://paleodiet.com/ms/)
It linked to another site that provides this interesting info about a German physician using a mostly-raw diet to successfully treat MS.
J. Evers, M.D. reported considerable improvement in nearly six hundred M.S. patients on an unprocessed and mostly raw diet (Public Deutsche Med. W., 72:521, September 19, 1947).
Raw milk, raw eggs, honey, sprouted rye and wheat, some whole grain bread and coarse flakes, were permitted and vitamin B-1 (thiamin) supplements were used (I would avoid the grains myself). The food was either "raw or at least as little denatured as possible." Prohibited foods included preserved foods, nicotine, coffee, tea, alcohol, salt, sugar, white flour, spices and condiments.
"Dr. Evers went on to found the world's first clinic specializing in multiple sclerosis treatment. Before 1970 he had treated over 10,000 cases. His experience and success cannot be easily dismissed. Dr. Evers has written two books: The Changed Aspects of Diseases and the very practical Directions For Treatment of Multiple Sclerosis. Both are published by Karl F. Haug, Ulm/Donau, Germany, 1964."
From: AN IMPORTANT NATURAL THERAPY FOR MULTIPLE SCLEROSIS
http://doctoryourself.com/ms_2.html (http://doctoryourself.com/ms_2.html)
9T)here is the work of Dr. Joseph Evers of Germany. He has treated nearly 1,000 cases of multiple sclerosis with diets which included no refined foods but which were composed chiefly of raw vegetables, raw fruits, raw nuts, raw honey, raw grain sprouts, uncooked coarse rolled oats, whole meal bread, raw ham, raw bacon and raw chopped beef. The success enjoyed by Dr. Evers in the treatment of multiple sclerosis is in itself the greatest documentation in the world for the value of the raw food diet. No other medical doctor anywhere claims beneficial treatment for multiple sclerosis. I have corresponded with Dr. Evers for over 10 years and I have sent people to him. They have returned in good condition and told me personally that Dr. Evers helped them.
Does the Raw Food Diet Work? - Raw Food Experiments
By Adam Brookover
http://www.healthguidance.org/entry/9985/1/Does-the-Raw-Food-Diet-Work---Raw-Food-Experiments.html (http://www.healthguidance.org/entry/9985/1/Does-the-Raw-Food-Diet-Work---Raw-Food-Experiments.html)
Before he died in 1977, Dr. Evers treated more than 15,000 patients (source: http://www.sharecare.com/question/diet-treatment-effective-multiple-sclerosis (http://www.sharecare.com/question/diet-treatment-effective-multiple-sclerosis)).
Unfortunately, Suiren reported that the person in question also has kidney disease and other illnesses that further complicate matters. Not all physicians are equally bad (Dr. Evers certainly seems light years ahead of most, for example). If she gets interested in a Paleo approach, maybe the Paleo Physicians Network might help her find a Paleo friendly physician in her area: http://paleophysiciansnetwork.com (http://paleophysiciansnetwork.com) It's coordinated by Robb Wolf and Loren Cordain. She wouldn't have to tell them that she's doing a raw or mostly-raw version.
Dr. Kenneth J Tourgeman, MD is a Nephrologist who uses a (cooked) Paleo diet in his therapy in Florida (http://www.vitals.com/doctors/Dr_Kenneth_Tourgeman.html#ixzz1u2AQdwVQ (http://www.vitals.com/doctors/Dr_Kenneth_Tourgeman.html#ixzz1u2AQdwVQ)) and he and his patient "Billy E" have reported some success with partly reversing mild chronic kidney disease (which is supposed to be impossible). Someone who is not yet on dialysis would have the best chance of improvement. Maybe Dr. T might have some suggestions. Unfortunately his blog/forum now requires an invitation (http://nephropal.blogspot.com/ (http://nephropal.blogspot.com/)).
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Phil - my Mom's nephrologist was beyond stumped as my mother's kidney function continued to improve!
Kidney disease and failure are quite different so let's just hope she is not on dialysis yet! Just my experience with Mom proved to me that kidney function can be improved with diet.
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I work in the healthcare industry (though I'm not a physician and don't even play one on TV ;) ) and am familiar with kidney failure. It's a vague term that can refer to acute kidney failure/injury or chronic kidney disease CKD. If she has chronic kidney disease, then there's a wide range of severity, from stage 1 to stage 6 (end stage). It doesn't sound like she has acute kidney failure, based on what was reported, because that would require hospitalization (and usually dialysis) to enable recovery to stabilize her condition, and nephrologists are usually able to stabilize a patient who isn't nearing death within days. Dialysis is also often used in the treatment of CKD, particularly in the more severe stages, but doesn't usually require hospitalization in the less severe stages.
It's also possible that Suiren is right that the physician was using the term loosely to warn her that her kidneys are on the path to failure. In that case there would be hope that she could halt the progression before reaching the level of stage 1 chronic kidney disease (Glomerular Filtration Rate > 90). That would be the best case scenario and offer the greatest hope for improvement.
Even if she hasn't reached stage 1 CKD, this particular patient's reported illnesses are sufficiently severe, multifaceted and complex that none of us can make basic, simple home-remedy advice without possibly causing much more harm than good. That's why it would be best if she could find an excellent physician who's at least open to some sort of Paleo approach, like a Dr. Terry Wahl's type, and perhaps also some sort of alternative healthcare practitioner, like a Chris Kresser type (he happens to be a chiropractor, though my experience with chiropracters has actually been that the good ones are few and far between). Finding really good physicians and good alternative practitioners can be difficult and time consuming, as they are rare. In the meantime, she could also do what a lot of us have done and do her own research by reading/viewing the resources that I and others shared here (though I'm not a fan of some of them, but hopefully she'll be able to weed out the useless stuff with her own skepticism), medical journals and studies (PubMed is a good resource), this forum, etc. After all, no one knows her condition as intimately as she herself does.
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I work in the healthcare industry (though I'm not a physician and don't even play one on TV ;) ) and am familiar with kidney failure. It's a vague term that can refer to acute kidney failure/injury or chronic kidney disease CKD. If she has chronic kidney disease, then there's a wide range of severity, from stage 1 to stage 6 (end stage). It doesn't sound like she has acute kidney failure, based on what was reported, because that would require hospitalization (and usually dialysis) to enable recovery to stabilize her condition, and nephrologists are usually able to stabilize a patient who isn't nearing death within days.
It's also possible that Suiren is right that the physician was using the term loosely to warn her that her kidneys are on the path to failure. In that case there would be hope that she could halt the progression before reaching the level of stage 1 chronic kidney disease (Glomerular Filtration Rate > 90).
Yeah - I've always heard of chronic kidney disease being quite distinct from kidney failure. It might be the doctor or it might be what someone heard rather than what was said as kidney failure might be a term more familiar to the general public so maybe just a misunderstanding? If she isn't on dialysis and she's able to stay home - even though I certainly am no doctor or actor either - it really makes it sound more like kidney disease which is light years more hopeful. Even with kidney disease though that mineral balance thing really has to be watched...... but there will be so much more leeway the less severe the kidney disease is. If she is just at the beginning of kidney disease rather than kidney failure - that would be almost easy. ;)
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Yeah - I've always heard of chronic kidney disease being quite distinct from kidney failure.
"Kidney failure" is a bit confusing, because a physician using that term might be referring to either CKD or AKI (acute kidney injury/failure).
It might be the doctor or it might be what someone heard rather than what was said as kidney failure might be a term more familiar to the general public so maybe just a misunderstanding?
Without more details, I can't know for sure precisely what her physician meant, but it certainly doesn't sound like she has AKI.
If she isn't on dialysis and she's able to stay home - even though I certainly am no doctor or actor either - it really makes it sound more like kidney disease which is light years more hopeful. Even with kidney disease though that mineral balance thing really has to be watched...... but there will be so much more leeway the less severe the kidney disease is.
Yes, dialysis has not been mentioned yet, so her kidney illness so far doesn't sound very advanced. And you're right to point out the special risks of kidney problems. For example, Paleo-type diets tend to be high in potassium, which can be a dangerous risk for renal disease patients. That's why when a kidney disease patient asked me for suggestions, I made sure they fit with his special prescribed diet and suggested he check them with his physician. Unfortunately, he had waited until his disease was too advanced before looking into alternatives for anything to help him much and I don't think he followed through on many of the things I suggested he check with his doctor on.
I'm appalled that Suiren's friend was put on chemotherapy, apparently for the MS, though we don't know what sort exactly, nor the precise reasoning. I'm not getting a sense that the treatment and advice she is getting are particularly good, but I try to avoid prescribing and even a physician would not prescribe based on the tiny bit of info that has so far been shared (at least not an ethical one).
The problem with conventional treatment of MS and kidney disease is that they mainly seek to ameliorate symptoms, not halt progression of the diseases, and (as you pointed out), in the long run they tend to cause additional organ damage, so that the patient often dies from the therapy before they die of the disease. I've read hundreds of kidney disease cases and I've yet to see one improve from conventional treatment, but I've seen reports of several patients improving some under Dr. Tourgeman's care and I've seen multiple reports of MS patients improving dramatically on dietary and other unconventional therapies. Dr. Wahl's case is particularly impressive and difficult to dismiss, since she herself is a physician who tried the "best" that conventional therapy had to offer (which failed miserably) and she is starting a study to test her Paleo protocol that succeeded so well on her.
Dr. Evers' work is also hopeful. The problem is that it isn't in English, so it probably won't have much impact in the USA. Plus, it included grains, but the raw aspect and the number of patients he treated is very interesting.
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Oh no, I did not mean to say she should tell any doctor about the paleo diet. -X
I was just referring to the conversation about how conventional insurance does not cover naturopathic and holistic treatments.
She might want to look into some sort of alternative treatment to cope with pains and other problems while she is changing her diet.
I am by no means recommending doctors to her. I had my share of doctor nonsense, got really tired of it, got off meds on my own account and now I'm better. :D
I agree they are trying to sell drugs...or well the makers of the drugs are trying to sell them through doctors which believe drugs to be the only way...
Suiren,
This is one of the problems with internet conversations. Misinterpretation. Thanks for the clarification.
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Suiren,
I'm so glad your friend is home. She must be out of organ failure or she would not be home. Chemo meds and Lupus meds can be quite toxic. People can have deadly reactions even to one dose.
But your friend is home so she must be stabilized. In addition to all of the raw foods she wants she must keep her mind healthy. Just being there for her to cry with and to bring her hopes back around if she slips into depression is so powerful.
What is she doing now for food, meds, health? Is anything helping? Does she want/crave anything? What are her worst symptoms?
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Adora,
like I said, I don't know her very closely. We know each other from Instagram where we are part of a network where moms only add other moms and share their pregnancy and babies life. I have known here since she was pregnant, but she does not talk about her condition often, and when I learned about the recent bad news she was in the process of moving (she lives in the US), but agreed to try different options.
She will have internet back on the 16th, I will let everyone know how she responds to my help offered.
I work in the healthcare industry (though I'm not a physician and don't even play one on TV ) and am familiar with kidney failure. It's a vague term that can refer to acute kidney failure/injury or chronic kidney disease CKD. If she has chronic kidney disease, then there's a wide range of severity, from stage 1 to stage 6 (end stage). It doesn't sound like she has acute kidney failure, based on what was reported, because that would require hospitalization (and usually dialysis) to enable recovery to stabilize her condition, and nephrologists are usually able to stabilize a patient who isn't nearing death within days. Dialysis is also often used in the treatment of CKD, particularly in the more severe stages, but doesn't usually require hospitalization in the less severe stages.
Hm...I'm not sure how she got the idea then. Must have been a bad misunderstanding, and she may be worrying herself more than she has to. And like I said, I do think it is possible doctors completely dramatized the results too...the things doctors have told me...I could write a book about it. l)
Thanks everyone for your help!
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So I recently asked her how she is doing, seeing that she is going through a
lot of alternative treatment.
She said she has been on raw paleo for a while and no meds but all of a sudden it is hurting her stomach. So now she is switching to cooked vegan and starting a list of meds to stop the strokes.
Does anyone know why it could be hurting her?
My thought is that if you cheat too often, especially with grains and such, it could cause pains from the wheat or so. I am not sure she is all strict about it.
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she needs probiotics?
Or maybe her liver needs cleansing with liver flushes or coffee enema?
It depends on her condition and what she is ill with.
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Too much roughage was bad for me. Some "vegans" eat massive amounts of raw kale, salads, etc. All the fiber is can be extremely irritating and constipating. I would see if she would consider juicing or cutting out the raw vegetable fibers.
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she needs probiotics?
Or maybe her liver needs cleansing with liver flushes or coffee enema?
It depends on her condition and what she is ill with.
Coffee enema? Eww..lol does it come with instructions?
I asked her and she has: gerd, ulcers, cystic kidneys, and ovaries, calcified pericardium, cerebral vasculitis, lupus, chronic kidney stones, ms, asthma, lactose intolerance.
Too much roughage was bad for me. Some "vegans" eat massive amounts of raw kale, salads, etc. All the fiber is can be extremely irritating and constipating. I would see if she would consider juicing or cutting out the raw vegetable fibers.
Yeah, she might have done too much of that. I know many are not to keen on eating a lot of meat and eat a lot of veggies instead.
Btw. I also found out her dad recommends raw and cooked paleo to his patients! :o What a surprise! She did raw for 3 and then cooked for 4 years but only bettered on a vegan diet. I wonder if she has troubles absorbing fat, proteins etc.
Her parents are doctors and were exposed to chemicals. The whole family is pretty sick and she has been since she was a child :(
She was also in the hospital recently, testing for cerebral vasculitis, she had MRI's and EEG's and a spinal tap and some vicodin if I am correct?