My recovery story, in case anyone is interested

Dr.Patient

There is no kinship like the one we share!
Messages
505
Likes
557
Location
USA
@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.
Anything happened to you to cause this relapse, any infection or increased physical activity a month before? Thanks. People often cannot remember increased physical activity done a month prior, and thus cannot correlate the two.
 

melamine

Senior Member
Messages
341
Likes
374
Location
Upstate NY
Hi James - Wonderful videos, all worthwhile - and funny in their way. Thanks for those and posting your experience here. Your intuitive guide seems to have been fundamental to your recovery. It's not the first time I have noticed that being the case in recovery stories. It also shows how much can be done without a lot of expensive tests. I think the reasons vary for each of us not finding our intuition or not trusting it long enough. Which isn't to say that everyone can recover if only they would...

You spoke about doing something I had also done - removing dairy and wheat at various times, then adding them back in because you didn't feel any better. In that case, what made you take them out again and did you remove them at separate times or at the same time? Did you remove anything else at the same time? I have recently experienced some improvement since removing dairy(again), but have not removed it 100% yet: I prefer to ease out of it by first removing it from sources where I formerly had it daily and even multiple times daily.

Can you talk about whether there was any recognizable turning point for you?
 
Last edited:

maddietod

Senior Member
Messages
2,727
Likes
2,529
Location
Baltimore, MD
I'm enjoying your videos.......I've got #4 left to watch. Thanks for sharing.

I'm in the middle of an elimination diet, and I'm already surprised. First, that I'm sensitive to so many things I ate daily (tea, coffee, all dairy, eggs, wheat, corn, testing soy soon); second that most of my reactions are delayed.

As you say, it does no good to go off one food and see if that "works." I've been gluten-free for a long time, and periodically dairy-free, but I'd never taken out eggs. And I've always drunk either tea or coffee.

I was going to wait and post once I'm through this process and have some results, but it will be weeks before I'm done with the basic testing. I will post again once this either does or doesn't increase my energy.
 

drob31

Senior Member
Messages
1,486
Likes
1,082
I'm enjoying your videos.......I've got #4 left to watch. Thanks for sharing.

I'm in the middle of an elimination diet, and I'm already surprised. First, that I'm sensitive to so many things I ate daily (tea, coffee, all dairy, eggs, wheat, corn, testing soy soon); second that most of my reactions are delayed.

As you say, it does no good to go off one food and see if that "works." I've been gluten-free for a long time, and periodically dairy-free, but I'd never taken out eggs. And I've always drunk either tea or coffee.

I was going to wait and post once I'm through this process and have some results, but it will be weeks before I'm done with the basic testing. I will post again once this either does or doesn't increase my energy.

I'm with you on this one. Removing tea/coffee/eggs seems to have a big impact. I always avoided gluten and usually dairy, but not always dairy. I think dairy is huge as well.
 
Messages
52
Likes
120
Hi melamine,

the turning point for me was believing my body was capable of healing itself. I looked at every single thing I did during a day and decided wether it was hindering or helping my recovery. Putting chemicals under my armpit? Not helping recovery. Having this hard dough toast? Not helping. This milk that is really meant for a baby cow to help it grow? not helping.

I took out everything at once. If I didn't think it was helping me recovery, it was gone the same day. Same with stimulation aka games/movies. That was very difficult. I noticed that excess stimulation and being engaged in something that is tense drained me and kept my body wired which hinders your bodies ability to heal in my opinion.

I just kept doing that for everything I did in my day-to-day life. If I felt my body wasn't up to exercise? I did none. I just listened to my body.I had many turning points... one being when I tried raw vegan for a few weeks back when I was trying one treatment at a time.. and I noticed that my ibs symptoms were dissapearing and that black cloud of depression that followed me had dissapeared. that's when I noticed food had a huge impact on how i felt. I didn't stay raw vegan because it wasn't a viable option for me.. but when I tried dairy for example after that period of raw foods i would cough of mucus. It just made me realise that my body did not want it. It made me more aware of what I put in my mouth and how it made me feel.

Another turning point was my free consultation at a chiropractor. Up until that point my posture was awful and I was so tense that it made it impossible for my body to turn off at night, effecting my sleep.. also caused me daily headaches and kept my body wired.

Another turning point was a psychologist helping me through a very hard time in my life.

If I had only done one of the above options, I wouldn't be talking about recovery now. No one treatment would of got me to where i am now. that's what I want to get across to everyone. Don't expect to cut out gluten and be cured. Don't re-add it to your diet because you didn't feel great straight away. make good changes daily and keep doing it month after month.

Look at every single action you do tomorrow and ask yourself if it will improve or hinder your recovery. It's awful at first and difficult but it worked for me.
 

TigerLilea

Senior Member
Messages
1,147
Likes
3,423
Location
Vancouver, British Columbia
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.
Another theory with bread is that it isn't the gluten or wheat, but, instead, the yeast that is used. Today's yeasts are typically fast rising and, therefore, don't burn off as much gluten as a slower 12 hour rising using natural yeast.
 

SwanRonson

Senior Member
Messages
300
Likes
215
Location
Alabama
Another theory with bread is that it isn't the gluten or wheat, but, instead, the yeast that is used. Today's yeasts are typically fast rising and, therefore, don't burn off as much gluten as a slower 12 hour rising using natural yeast.
I've heard this as well. Supposedly, traditionally made sour-dough has very little gluten. I used to make my own sourdough starters from open air and it's not hard at all. Just takes patience. And the taste varies dramatically from region to region based on what strains of bug are floating around in the air.
 

melamine

Senior Member
Messages
341
Likes
374
Location
Upstate NY
I took out everything at once. If I didn't think it was helping me recovery, it was gone the same day. Same with stimulation aka games/movies. That was very difficult. I noticed that excess stimulation and being engaged in something that is tense drained me and kept my body wired which hinders your bodies ability to heal in my opinion.
I think emotional things like those can be overlooked sources of wiring and draining. Your statement about taking things out all at once that did not help highlights a kind of optimism that I believe is essential to your story.

I had many turning points... one being when I tried raw vegan for a few weeks back when I was trying one treatment at a time.. and I noticed that my ibs symptoms were dissapearing and that black cloud of depression that followed me had dissapeared. that's when I noticed food had a huge impact on how i felt. I didn't stay raw vegan because it wasn't a viable option for me.. but when I tried dairy for example after that period of raw foods i would cough of mucus. It just made me realise that my body did not want it. It made me more aware of what I put in my mouth and how it made me feel.
So you were actually getting an identifiable symptom associated with the dairy. It sounds as though your vegan period might have highlighted a reaction to dairy that might have otherwise flown under the radar.

It's good to see how not only diet, but all those other things fit into your recovery, and how you figured it out piece by piece. Thanks again for sharing your story.
 
Messages
52
Likes
120
Thanks melamine.

It took years of hitting rock bottom and needing desperate change for me to reach the optimism to change every detail about my life. I like to say If only I had known this 1-2-3-4-5 etc years ago, but I doubt I would have stuck to it. I _needed_ the change for me to want to keep living.

I never thought about that regarding a unindentifiable symptom assiocated with dairy. I just assumed that, because for the first 14 years of my life I had dairy and was healthy that I would never have a issue. But, I guess if your immune system is getting hit hard and your health is declining.. new allergies could show up.

I'm going to do a overview video pretty much summarizing what I've said in this thread and more tomorrow. good night everyone and thank you
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Likes
1,080
I promised to myself that once I felt I had recovered, I would make videos documenting how i recovered from CFS.
Your videos are very inspiring. I very much like the "informal" conversational style that you present them in.

Like you, I've tried every conceivable supplement under the sun and only a handful have really helped. I think you're right that diet and lifestyle changes are the cornerstone of any recovery program. I also think these are the hardest issues to address.

Keep up the good work! I'm looking forward to the next batch.
 

jimells

Senior Member
Messages
2,009
Likes
6,159
Location
northern Maine
Anything happened to you to cause this relapse, any infection or increased physical activity a month before? Thanks. People often cannot remember increased physical activity done a month prior, and thus cannot correlate the two.
Well, certainly my actively level increased greatly during the remission - by definition. I've had a number of partial remissions - they appear to be spontaneous. The last one ended in January 2014, so I'm definitely ready for another one. My porch is falling apart, and I need to feel well enough to find someone to do the work.
 

xrunner

Senior Member
Messages
843
Likes
695
Location
Surrey
Hi @james7a
it's always uplifting to hear of recovery stories, well done! and I also applaud you for openly sharing your experience and to try and help others.
In the past, we have seen cases where people recovered but moved on quickly trying to make money out of their story...so the fact that you instead decided to share freely what worked for you should be appreciated by everyone.

Do not go on runs or lift weights. If you do things like that, your cfs will come back. It may show up even up to a month later. I urge you, please do not do such things!!!
I'd agree with this advice.
I could relate to some of what you said in your videos because I benefited myself from some of what helped you when I suffered from chronic fatigue for over ten years before getting seriously ill.

I think diet, CBT to cope with stress and anxiety, sleep hygiene helped me keep going for over ten years However, I wouldn't want to hear anything about slowing down or giving up exercise until about eight years ago when some sort of viral trigger hit me and it was never the same. I have now partially recovered but further progress seems elusive as this is a stubborn disease.

Apart from exercise and overactivity, I'd also be careful with cutting out everything from diet that may cause adverse reactions
I was vegan for a few years before I fell very ill and for three years into it because it made me feel better and gave me more energy but that, in restrospect, backfired badly for somebody like me with a genetic weakness in respect of methylation. There's a better way to overcome food sensitivities (i.e. immunotherapy) which has helped a few people recover from our illness, rather than cutting out foods that can cause later critical nutritional deficiencies.
May your body stay stay strong and healthy!
 

Marco

Grrrrrrr!
Messages
2,386
Likes
3,222
Location
Near Cognac, France
Congratulations James. Glad to hear of your improvement.

To paraphrase economists - 'That may work well in practice but how does it work in theory?'

I like to try to understand 'why' something may or may not work. Have you any ideas yourself?
 
Messages
52
Likes
120
My theory:

I see the body as a set of scales, and why I believe my approach has worked for me is because each action i've taken has reduced the burden on my body. Overtime this has enabled my body to function as it's supposed to do. I also focused heavily on reducing anything that would cause any unnessecary activity in the sympathetic nervous system. Stimulation of any kind including: Violence/sex etc in TV/movies/games, try to keep masturbation to a minimum, exercise other than walking, arguing with people etc. I tried to keep my body in a calm state as much as possible. I would wind down each day an hour at least before bed(going to bed early aswell, before 10pm). If I had only done any one thing of the list I've mentioned in this thread/my videos I wouldn't have got anywhere. I believe it's because i changed _everything_.

my thoery could be completely wrong, but no one can deny that living healthier is going to make you feel worse.

I just did my video relating to this thread, will upload tomorrow (slow upload). night
 
Last edited:
Messages
137
Likes
54
I also focused heavily on reducing anything that would cause any unnessecary activity in the sympathetic nervous system. Stimulation of any kind including: Violence/sex etc in TV/movies/games, try to keep masturbation to a minimum, exercise other than walking, arguing with people etc.
Funny, I realized the exact same thing. Except mine was more overt. I have a muscle tear that would actually re-tear whenever I watched something exciting on a screen.

But there is something you mention in at least two of your videos that without it, it would have been impossible for you to get better. Do you know what it might be?
 
Messages
5,902
Likes
12,702
Location
South Australia
I had a few remissions early on in my illness. Sadly I became ill again and nothing I tried worked. I have no doubt that diet and nutrients (particularly vitamin B12) play a role in leading to remission. I don't absorb lactose well for example (proven on tests). But much of it is luck too, unfortunately.

I hope James is lucky enough to stay well!
 

Marco

Grrrrrrr!
Messages
2,386
Likes
3,222
Location
Near Cognac, France
My theory:

I see the body as a set of scales, and why I believe my approach has worked for me is because each action i've taken has reduced the burden on my body. Overtime this has enabled my body to function as it's supposed to do. I also focused heavily on reducing anything that would cause any unnessecary activity in the sympathetic nervous system. Stimulation of any kind including: Violence/sex etc in TV/movies/games, try to keep masturbation to a minimum, exercise other than walking, arguing with people etc. I tried to keep my body in a calm state as much as possible. I would wind down each day an hour at least before bed(going to bed early aswell, before 10pm). If I had only done any one thing of the list I've mentioned in this thread/my videos I wouldn't have got anywhere. I believe it's because i changed _everything_.

my thoery could be completely wrong, but no one can deny that living healthier is going to make you feel worse.

I just did my video relating to this thread, will upload tomorrow (slow upload). night
Thanks. Makes sense. I watched your first video on diet and it struck me that, in pausing to consider whether eating a particular food was likely to help or hinder your recovery, you were almost practising a form of 'mindfulness'. If you are applying the same approach to other aspects of life as your comments suggest then I imagine it could have a calming effect on sympathetic dominance.
 
Messages
52
Likes
120
thanks snowleopard/xrunner and marco that's true

Vic, I mean everything. every thing i did played a role in recovery. The only reason I'm feeling good is because i changed everything, if i had only do a few things I wouldnt be better. If i had kept trying to recover like I did 2-3-4-5 years ago where I would:Try 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. etc. this does not work. cut it out and it will be a good foundation for whenever you find your catalyst. Build your recovery like a house and be in it for the long haul. add treatments and changes that will be beneficial and build them over time.
(video uploading now)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Likes
12,279
Location
U.K
I imagine that many of the interventions you mention would help greatly in supporting a tired adrenal system and in many other ways - perhaps allowing your body to fight Lyme by getting it in an optimal state? (you mention a tick bite). I know some of Dr Myhills patients have recovered to a large degree by the kinds of intervention you mention.

For me I imagine that this kind of lifestyle would mean I would have to leave my family, live alone and pay for a full time carer to cook for me etc. I have a family, children, am too ill to spend a lot of time sorting out food, also on a very low family income - at times I just have to eat whatever is in the house that I can eat quickly and easily. Right now am trying low histamine diet as my mast cells are over active, I have also been diagnosed with EDS type III recently and neither of these issues can be cured with lifestyle changes im afraid. (other than the low histamine diet, hwicch isn't a cure, but slightly controlling symptoms)

I'm really glad for you that you have recovered and I hope your videos help those who are able to also reach some level of recovery, but for me I have enough to deal with in my life without feeling I need to take this level of responsibility for my illness. That may sound strange to many - why shouldn't I take responsibility for myself. Well because talking about this many changes of lifestyle in order to 'cure' yourself is only the kind of advice that is offered to Pwme to do. If I had another, more well recognised disease then I would have real treatments and support. This kind of approach for me personally feels like a way of blaming myself for being ill if I cant live up to it - I have been there and done that and I do not believe my illness is of the type that I can drastically change through my own lifestyle efforts.

I've started using milk again recently and I eat pasta, and other carbs and I really am bored of people saying I will never get better if I still eat these things. My friend had cancer, she had surgery, chemotherapy and fantastic care and she got better. No one threw their hands up in horror because she ate a wholemeal sandwich, or because she is a vegetarian, or because sometimes she ate cream cakes.

This is just my reaction to how this kind of thread makes me feel. I really am trying to be respectful, because I know we are all different round here and different people are helped by different things. I was on a no sugar including no fruit, no dairy, gluten free diet, resting all the time, restricting computer use etc etc for three years andit made very little difference to my overall heath. The best thing was just rest and pacing. I have found out I shouldn't eat eggs from testing and since stopping eating them all the time(I am a vegetarian and just made my health worse trying not to eat any grains and just eating veggies, eggs, some legumes occasionally and fish) I managed to get rid of most of my stomach problems. I jumped on board the juicing wagon at one point (not fruit, green juicing) and all that happened was that I developed the most excruciating stomach pain I have ever experienced that took weeks after I stopped to resolve.

One final point. 18 years ago I achieved a near total remission spontaneously, although at the time I started yoga and attributed my remission to doing yoga (I now know this was just coincidental) 9 years after this I caught measles from my children and have been severely ill ever since. so please be careful for the future, but also enjoy your life now you have it back!

This is not to judge anyone here - I just find this advice depressing for me personally.