My recovery story, in case anyone is interested

[Mij]

@james7a based on your history I would take it easy on the exercise. You might possibly be in a remission.

 

[Gondwanaland]

I think there is more than enough research linking diet and chronic diseases, and those who overlook diet might be missing an important step towards wellness.

Having said that, I find it very hard to follow a perfect anti-inflammatory diet with balanced nutrition, considering my underlying absorption problem. Supplementation has been proven essential for me because of that.

I have found that I need more protein sources than meat and egg yolks (egg white causes me inflammation), especially lysine, so I reintroduced yogurt, curd and cheese to my diet and am back to constant bloating.

Although lately it seems that interventions (diet and supplements) have little or no effect in my health. It looks like I will get nowhere while my thyroid is failing me.

Another important thing I am trying to understand is how to address gut dysbiosis and leaky gut.

 

[drob31]

I think there is more than enough research linking diet and chronic diseases, and those who overlook diet might be missing an important step towards wellness.

Having said that, I find it very hard to follow a perfect anti-inflammatory diet with balanced nutrition, considering my underlying absorption problem. Supplementation has been proven essential for me because of that.

I have found that I need more protein sources than meat and egg yolks (egg white causes me inflammation), especially lysine, so I reintroduced yogurt, curd and cheese to my diet and am back to constant bloating.

Although lately it seems that interventions (diet and supplements) have little or no effect in my health. It looks like I will get nowhere while my thyroid is failing me.

Another important thing I am trying to understand is how to address gut dysbiosis and leaky gut.

Not to divert the conversation but have you ever tried an autoimmune paleo diet?

I always cringe when I read people eat dairy or gluten.

 

[james7a]

I have to agree with Drob. Even if you think you can tolerate dairy/gluten they're not helping your recovery. IMO dairy slows recovery if anything.

If i had a gut disorder I would literally eat like a poor man. vegetable soups, root vegetables and anything that's easy on the stomach whilst taking lots of probiotics. I would do that for 6 months+ without trying or cheating with gluten/dairy. If you don't feel cured, don't go back to your old eating ways.(HUGE mistake many people make is thinking any 'one' change should fix your issues, it never will. you will chase a so called cure treatment for the rest of your life like that.. I did it since 2008) FIX other areas of your life, it all adds up to your recovery.

I haven't eaten gluten/dairy since august. I tried adding eggs back into my diet at one point and it was a disaster and my body let me know it didn't want ANY dairy products by making me spit up mucus and giving me IBS. Sure it's boring to be dairy/gluten free, but it is the best you can do when it comes to diet.

The mistake some people make when going gluten free for example is buy gluten free bread. That is no better.. you need to stop those types of food period. I found it so difficult in the beginning to eating such a basic diet but I counter acted that by just eating until I was really full. after a few weeks my cravings for those foods diminished drasitically. The idea of cheese makes me feel abit sick now but one year ago I didn't have a meal without cheese on it.

Like I said in my video, stare at a food before you eat it. Is it helping you recover? if not, don't eat it.

 

[Mij]

I did a gluten free diet a few years ago and although I didn't feel any improvement it was nice not being bloated all the time. I also did a macrobiotic diet for a few months and felt even-keeled/calm, but after a while I realized that I need and feel stronger with meat protein.

 

[Gondwanaland]

I find it intriguing that my gut has been at its best only when I eat European dairy, including milk, and I am +/+ for lactose intolerance.

 

[james7a]

I did a gluten free diet a few years ago and although I didn't feel any improvement it was nice not being bloated all the time. I also did a macrobiotic diet for a few months and felt even-keeled/calm, but after a while I realized that I need and feel stronger with meat protein.

not being bloated all the time shows that it did have a benefit on you. The point I'm trying to make is don't expect a full recovery from any 'one' therapy/treatment you do because there never will be a single treatment that brings you into a full recovery. Maybe being gluten free for you did have a benefit, you just had more changes you could be making?

If you look back at my post in june last year I was at my wits end and stated that a 6 week gluten free diet did nothing for me because it didnt 'cure' me. This is the main point I want to get across to all of you.

So I tried gluten free for 6 weeks. That's all I did. A gluten free diet. It didn't cure me. I went back to gluten. I then tried dairy free. It didn't cure me. I went back to dairy. This way of thinking is flawed. You have to build up your attack agaisnt from CFS from every single angel possible. This is when you start seeing desired results. It's damn difficult to have to take away so many things you consider pleasurable because it's all you have but it has to be done.

nothing wrong with meat protein, dairy however is a different story..

 

[james7a]

I find it intriguing that my gut has been at its best only when I eat European dairy, including milk, and I am +/+ for lactose intolerance.

A lot can be said for the way cows are raised and what diets they are fed. Not to mention what they are pumped with.. maybe the european cows are more healthy and pumped with less crap? have you ever tried raw dairy? Raw dairy contains lactase which negates lactoses effect on the body (from what I know). The only problem is the risk of having it raw.

back when I was on the merry-go-round of finding the ultimate treatment for CFS I was in my 'i must heal my gut' phase and came across Kefir. I read that the 'ultimate' probiotic is raw goats milk kefir. So i found a farm that did exactly that and ordered some...

Within 30minutes of drinking the raw goats milk I was peeing blood. lol.. the raw milk gave me acute renal failure.

I could list the hundreds of alternative things I've tried and wasted my time on... but you have to make a million mistakes before you get it right, I guess.

 

[Gondwanaland]

A lot can be said for the way cows are raised and what diets they are fed. Not to mention what they are pumped with.. maybe the european cows are more healthy and pumped with less crap? have you ever tried raw dairy? Raw dairy contains lactase which negates lactoses effect on the body (from what I know). The only problem is the risk of having it raw.

No safe dairy were I live now to try it raw.

 

[Mij]

@james7a I am rethinking dairy. I may eliminate it and see how I feel. I also have a malabsorption problems and if I can get to root of just THAT and absorb proper nutrients from foods I would be happy.

 

[A.B.]

Many cheeses are lactose free. In Europe at least. I also believe the problems many have with bread is not gluten but the chemical additives that are sometimes present. I can eat good quality bread without problems, but a pizza or products with long shelf life often leads to loose stools or even malaise.

 

[Gondwanaland]

Many cheeses are lactose free. In Europe at least.

Cheese, yogurt, curd have very little lactose left. I have been trying to source my dairy from A2 type of casein though, which contains proline instead of histamine.

 

[brenda]

I agree entirely with James about diet and have been following a gluten, dairy and sugar free diet, along with soy free, caffeine free and low fruit, but it is the first three that I think are the most important and apply to everyone. I had no idea that dairy was bad for me till I stopped even raw dairy.

It does take time though and is hard when there is not much improvement and as James says, other things will be necessary, but they are the basis of a healing programme.

 

[SwanRonson]

Cheese, yogurt, curd have very little lactose left. I have been trying to source my dairy from A2 type of casein though, which contains proline instead of histamine.

Yes, I'm not lactose intolerant, but dairy casein causes me lots of problems. I had to switch to Ghee instead of butter.

The one thing not mentioned in the diet conversation is how expensive it is to eat organic, whole, grass-fed, etc. It costs a fortune. Especially if everyone in the family eats that way. Our grocery bill right now is off the charts.

 

[drob31]

It's not just lactose it's casein. Casein can appear as a gliadin (gluten) to your immune system. That's why gluten and dairy should be thrown out for any autoimmune and possibly CFS diet. IMO.

 

[Wayne]

Like I said in my video, stare at a food before you eat it. Is it helping you recover? if not, don't eat it.

Hi James,

Thanks much for the time and effort you're putting into sharing your recovery story. I've not watched your video yet, but anticipate doing so. I'm curious, even though you did not do well with raw goat dairy, do you put it in the same negative category as the other anti-dairy references you made? -- (I've assumed you were referring to non-raw cow dairy).

I got a kick out of your suggestion to stare at any food before eating it. I do a version of that to a certain degree, but will put more emphasis on it going forward. OK, time to go watch your video. -- Thanks again.

 

[jimells]

@james7a I experienced a near-complete remission in 2008, after being ill for five years. I'm not aware of anything I did to cause the remission. Alas, after a few months the illness returned. Remission and relapse seems to be a common experience here. Like others have suggested, please, do not tempt fate with too much activity.

I hope your remission is permanent.

 

[james7a]

Hi James,

Thanks much for the time and effort you're putting into sharing your recovery story. I've not watched your video yet, but anticipate doing so. I'm curious, even though you did not do well with raw goat dairy, do you put it in the same negative category as the other anti-dairy references you made? -- (I've assumed you were referring to non-raw cow dairy).

I got a kick out of your suggestion to stare at any food before eating it. I do a version of that to a certain degree, but will put more emphasis on it going forward. OK, time to go watch your video. -- Thanks again.

No problem wayne, I just want to help. I think raw dairy is better than pasturized dairy..I used to get raw dairy cream, milk and butter from a farm nearby and was 'fine' on it. but this is how I see it.
Milk is meant for baby cows. It is made for a calf to grow into a 300-400lb cow. Is that really beneficial to recovering? I honestly believe dairy is the worst food to have when you have a chronic illness. That's from my experience/opinion.

When it comes to diet, get rid of everything that has the potentional to cause any negative effects. then you can not go wrong. Like i've said before, it's difficult but it's worth it in my opinion.

 

[Wayne]

Milk is meant for baby cows. It is made for a calf to grow into a 300-400lb cow.

Yeah but.... Baby goats are a lot smaller than baby cows.

Raw goat milk seems like an entirely different product than cow milk, especially when it comes to the fat content and characteristics. I know it's not going to be a good thing for everybody, but it's worked well for me. Because of poor digestion, I felt protein deficient for many years. Raw goat dairy turned out to be the one food that my body was able to handle to overcome this chronic protein deficiency.

Just watched your first video. Am looking forward to watching the others. BTW, I just watched a 13-minute video [very well done] that you may find interesting. It touches on toxic dental materials and their role in health. There are reports of people on this board who've completely recovered from their CFS by identifying and addressing a variety of oral and dental issues. I personally think they are too often overlooked by people with severely compromised health. Here's a link:

CFS & Fibromyalgia: The Natural Recovery Plan

 

[james7a]

Yeah but.... Baby goats are a lot smaller than baby cows.

Raw goat milk seems like an entirely different product than cow milk, especially when it comes to the fat content and characteristics. I know it's not going to be a good thing for everybody, but it's worked well for me. Because of poor digestion, I felt protein deficient for many years. Raw goat dairy turned out to be the one food that my body was able to handle to overcome this chronic protein deficiency.

Just watched your first video. Am looking forward to watching the others. BTW, I just watched a 13-minute video [very well done] that you may find interesting. It touches on toxic dental materials and their role in health. There are reports of people on this board who've completely recovered from their CFS by identifying and addressing a variety of oral and dental issues. I personally think they are too often overlooked by people with severely compromised health. Here's a link:

CFS & Fibromyalgia: The Natural Recovery Plan

If it works well for you go for it.

regarding dental work, like I say all these little things add up when it comes to recovering from CFS. I would be wary of people who say just removing amalgan fillings cured their CFS.

I would caution anyone trying to remove amalgan fillings. It can cause more problems than it's worth unless you have someone that is a expert in the removal of fillings. Many people do just fine (like my dad) who have had amalgan fillings their whole life. Just don't jump the gun and get them taken out by the first person you can because that can make you incredibly sick. just be careful