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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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In a crash, I am a mess...

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Gosh, I hate to say anything...I am not in favor that any diet can eradicate or cure any of us whether it be cancer, or ME or whatever....

I know many who have had cancer but ate great and did before the cancer. But, when my sister came down with cancer and then died, I automatically thought, if she just ate better and didn't smoke. She ate horribly. Her idea of a salad was with anything fattening, a ton of dressing. She made Sloppy Joe's for dinner and just junk. A lot of the problem was that her husband hated veggies or they had to have cheese poured all over them.

My point, I sometimes wonder how much her diet and heavy smoking and obesity played into her cancer. I often think, if she had taken care of herself better, things would not have turned out the way they did.

She also never talked about her feelings. Everything with her was pride and dealing with all of her problems alone. I never met anyone so closed off to what was going on with them. I am the opposite. An open book.

I often think all of those factors lead to her death at age 48. The cancer was everywhere. But, who knows.

I know that for years I was on a super strict diet. From 97 until 2004 and it never made me well. Never even close. Tons of vitamins, etc. I was able to take more than, too. This illness just kept coming on like a freight train no matter what I did. I would get so mad. I used to be on probiotics heavily...they never did SQUAT. From VSL3 to Garden of Life to so many probiotics. ZIP.

I am on them now but only because I have the surgery coming on, but for me, I seriously don't even believe in probiotics. The woman at the vitamin shoppe always says...."well, they don't help you to be regular, they just restore good bacteria." But, my thought is....shouldn't I feel better? And that's when I was really low in sugar. There was a time when I didn't eat sugar. It did help with my endometriosis and IC, but never with the CFS truly.

Ugh...still a major puzzle.
 

Mij

Messages
2,353
@Misfit Toy I'm sorry to hear about your sister. Regarding probiotics, they didn't work for me eithe rand I took the expensive ones. They did not colonize in my gut and I had the tests to prove it. My friends mother who is 96 ate white bread and butter and enjoys a beer as her main diet most of her life and still does.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
God bless your mother, @Mij -that's awesome. I want to be your mom minus being 96. I want to drink champagne everyday. I love champagne.

Yeah, probiotics...I think, are a joke. Yogurt could work, but probiotics...not so much.
 

Mij

Messages
2,353
@Misfit Toy it's my friends mother. I love champagne too but I don't remember the last time I drank.

I didn't find yogurt worked for me, I made my own a while back, bought different bacteria cultures etc. I think there might be something to kefir and fermented foods though.
 
Messages
3,263
@Misfit Toy, Yea, sorry to go off on a rant on you like that. Of course you're right, certain lifestyle factors like smoking can contribute to quite a few illnesses. But I think like you a lot of us who "lived well" before our illness were so perplexed at the start - we feel we didn't deserve this! And sometimes it seems people are bending over backwards to identify that lifestyle "flaw" that caused us to go down. But not everything comes down to lifestyle and believing it does will leave you feeling angry and frustrated if you lived well and ended up severely ill. Or worse, lead you to self-blame.

On a lighter note, but still on the diet theme, this might cheer you up a little!

http://forums.phoenixrising.me/index.php?threads/one-small-reason-to-be-cheerful.34767/#post-542320
 
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physicsstudent13

Senior Member
Messages
611
Location
US
I had a really bad reaction to topamax nausea and terrible fog for hours after. I probably would seek another doctor's opinion and taper off of it.
 

brenda

Senior Member
Messages
2,266
Location
UK
I'm not saying that poor dietary choices are the cause of ME but regarding cancer, I have read in many places that a number of sources say that it is very significant along with other lifestyle choices. What I am saying is that diet is hugely important if we want to get our bodies into healing mode, much more important than supplements, no matter how we ate in the past. I have been into healthy eating for over 30 years, since I read Adele Davies, who was one of the earlier writers on nutrition and for periods did not eat any sugar (but ended back on it) and only ate whole foods, later getting into organic ones. I have been on many different diets including raw vegan and macrobiotic. It probably slowed down the progression of my illness which was brought on by mercury and pesticide poisoning for which concerning the former, I have suffered all of my life and have had low thyroid symptoms since then.

I understand totally the frustration of doing ones best to eat very healthy according to what most people is healthy which is lots of fruit and vegetables and not getting any better. I have tried every diet under the sun but it was not until I quit gluten that things began to look up and my MCS improved. Before that I could barely cope with the chlorine in the tap water and had to wash from out of a bottle of spring water. I believe that it is vital to get the thing(s) out of the diet that hold back the healing and that is why we fail so often. It takes time to find this out.

Just to give an idea of how sick I am, here are the forums on which I can join, and have at one time or another been a member of:

ME/CFS
MCS
Lyme disease
Food intolerances
Aspergers Syndrome
Hashimotos thyroidism
Hypothyroisism
Dry eye syndrome
Corneal erosions
Pinks Disease from mercury poisoning in early childhood
Pesticide poisoning
Interstitial cystitis
Fibromyalgia
MTHFR mutations
Metabolic syndrome
Diabetes
Candidiasis
Leaky gut
Dysbiosis
Joint inflammation
Adrenal insufficiency.
Possibly pituitary dysfunction.

What I believe is that our bodies want to heal and if we remove the things that are stopping them, then we will heal no matter how bad we are. Even me at 64 years of age and totally unsupported and without any medical help or even human contact at all. It is just a matter of getting the things out that are stopping this and it can also include negative emotions and especially anger. These must go to but the extent of all of this is in relation to how sick we are, obviously the sicker and the more things wrong with us the more that will need to be removed. Also vital is the belief that we will heal. If we listen to the medical profession and think that we cannot heal ourselves and we are stuck with it and might as well just do whatever we want then obviously the healing processes will remain stalled and could stay there for life.

So its just a matter of plugging on and trying to get the formula right. I am not big on supplements though sometimes they will be needed and prefer to get my nutrients from 'superfoods'. Many supplements are harmful I believe especially useless are the multis. I use bone broth, chia seeds, camu powder and wheat grass powder which very easily gets the high nutrition into the body that we need, and there are loads of things like that which can be read about on raw vegan forums. I do experiment with small amounts of this and that in supplements but have failed with methylation protocols.. I am also very much against using medications instead of finding natural means. I have not touched any for over 15 years despite having occasional infections even salmonella, which I have cured with natural means. I love garlic for that.

So now I am gluten, dairy apart from ghee, soy, alcohol, unhealthy fats, processed foods, nightshade vegetables, and sugar, free (blood sugar, weight and blood pressure are going down since quitting that though it was just one treat of candy/sweets most days and this is my first Christmas without sugar! ) but have just discovered that my body does not want caffeine which has been the thing that has been getting me through, that is from the chocolate I make myself from raw organic cocoa butter and solids and coconut nectar for sweetening. I can have carob however. Since stopping caffeine a few days ago I can see a definite change in my symptoms. My mind is coming back.

It is not hard to eat this way. For breakfast I am having chia seeds that soaked all night, mixed with a squashed banana, vanilla powder, oat milk, ground flax seeds and coconut nectar and it is very nice and was easy to make. Yesterday I had soaked quinoa cooked in oat milk with the same additions plus cinnamon and added nuts and seeds. That was delicious and easy to make. Lunch will be chicken and vegetables and then later lentil soup. For the chicken I cook and then cut up and freeze one with the juices in portions to make gravy.

I am not judging people who are not ready for this - it took me a long time. I had a damaging childhood and two bad marriage choices for which I needed healing and which have been the key for me. I just want to challenge the negativity that goes on here and stand against the idea that there is nothing we can do to recover our health. No need to feel guilty though as it can be a long journey but each step is important and the most important step is having hope. I hope that I have helped with that.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
I think you have a key point there Woolie.

'What's wrong
with just accepting that stuff happens for reasons that are very likely well out of our control?'

Although I can see the frustration behind Misfit Toy's:

'There is no rhyme or reason to this thing. '

There was an interesting article in the Guardian by Karel Sikora a few days ago making the point I have tried to emphasise for autoimmunity, but in cancer. ME is not cancer but the basic principle may well apply that most of it is just chance - random. A big study of causes of cancers shows that most cancers now are not due to genetics or environment, but to random change in cells. The immune system runs totally on random change to get itself ready for responses to infection.
 

brenda

Senior Member
Messages
2,266
Location
UK
Well it certainly wasn't random chance in my case @Jonathan Edwards. It was the administration of teething powders which contained up to 50% of mercury when the medical profession had been warned for years about using mercury in medications, and it was not until the 50's that they were taken off the market after 25 % of the babies affected died. And then it was the administration of pesticide, without evacuation, by the local authority after previous tenants had left cat fleas.

The powers that be would all like us to think that these chronic illnesses cannot be helped and it is all 'random' whilst they continue to poison our environment and our bodies.
 
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maddietod

Senior Member
Messages
2,859
Adelle Davis died of cancer.

I think we have both less and more control over our lives than we believe. I can't seem to make this illness go away, no matter what I do. OK, no control. But I'm one of the people who feels distinctly worse if I make certain food choices regularly. OK, some control.

Each of us is making choices about foods, supplements, medications, and lifestyle. We are helped or hindered individually by genetics, chemistry, location, support or none, etc. I haven't found any intervention that helps everybody.
 

xrunner

Senior Member
Messages
843
Location
Surrey
A big study of causes of cancers shows that most cancers now are not due to genetics or environment, but to random change in cells. The immune system runs totally on random change to get itself ready for responses to infection.

“This study shows that you can add to your risk of getting cancers by smoking or other poor lifestyle factors. However, many forms of cancer are due largely to the bad luck of acquiring a mutation in a cancer driver gene regardless of lifestyle and heredity factors. The best way to eradicate these cancers will be through early detection, when they are still curable by surgery,” adds Vogelstein.

http://www.hopkinsmedicine.org/news..._plays_predominant_role_in_cancer_study_shows
 
Messages
2,565
Location
US
We are all different. My diet is at least as restricted as brenda's. All my dietary changes over the past 4 years have not given me much improvement. Mostly helped 1 symptom, out of dozens.

I wish that were different. So many people notice improvement in cognition, energy levels, pain levels, etc but not me.

I am still continuing with the diet because I feel in the long-term it would lower my risk of cancer, diabetes, etc.

I think dietary changes are more likely to help anyone with toxin overload, who had longer courses of antibiotics without prebiotics/probiotics after, or who has food sensitivities. Less likely to help the rest of us.
 
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Gingergrrl

Senior Member
Messages
16,171
@Misfit Toy I have nothing to add at the moment re: the dietary issues b/c this is often personalized for each individual and their specific needs and goals.

But I wanted to respond to your original post and express how sorry I am that you are struggling so much lately and can really relate. I wish you the absolute best for your upcoming surgery and recovery and you are always in my thoughts and prayers :heart: :)
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Gingergrrl -thank you so much. I am trying to prepare and made soup and bought things I can just heat up. Taking vitamins for the surgery and have to go have a last minute physical on Monday, the day before which I am not happy about...too much to do. The only good thing about this surgery is I will not be able to do much at all for a week. In fact, I won't be able to do anything so I can just enjoy pajamas and warm covers......here;s hoping!
 
Messages
25
Misfit Toy, youre feeling dreadful but still found time to welcome me to the forum
I really appreciate that!
When i saw yr message,i thought how well and happy you look. Just shows how deceptive appearances are.
I really hope 2015 brings health and wellbeing x
Have you tried LDN? Ive not long started out on it,hoping it will bring me some improvement x
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl -thank you so much. I am trying to prepare and made soup and bought things I can just heat up. Taking vitamins for the surgery and have to go have a last minute physical on Monday, the day before which I am not happy about...too much to do. The only good thing about this surgery is I will not be able to do much at all for a week. In fact, I won't be able to do anything so I can just enjoy pajamas and warm covers......here;s hoping!

@Misfit Toy, I think your pre-surgery physical is today and your surgery is tomorrow if I am calculating this correctly?!! I want to wish you the absolute best with everything... that every detail goes smoothly and you have a good appt today and praying for an easy surgery and smooth and restful recovery for you. I know you probably won't be able to type as your wrist is healing but hope to hear from you as soon as you are able!

upload_2015-1-12_15-36-21.png
upload_2015-1-12_15-37-59.png
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Misfit Toy

I'll also be thinking of you. Sometimes the anticipation is harder than the actual surgery. You have done a lot of good preparation and our best wishes go with you! :hug:

Sushi