My recovery story, in case anyone is interested

[Valentijn]

One additional note is that "ME/CFS" is generally used by patients, versus "CFS/ME". "CFS/ME" is used by the psychobabbling brigade from the UK, and accordingly rejected by most people who also reject their psychosomatic theories.

Though some patients (myself included) are now trading "ME/CFS" in for "ME/SEID", perhaps in an abundance of optimism that the IOM report will be adopted by the US government agencies, and that "CFS" will die a quick and painless death.

 

[Snowdrop]

I've been in my current state roughly since september. My state currently is good, I tolerate exercise, no brain fog or experiencing any symptoms I had a year ago. I continue to follow my routine but I no longer see a psychiatrist (only had 3 sessions) and I no longer see a chiropractor. I will be making a video of 15 things I've changed in my daily life and that I continue to follow.

Thank you also for the reply to my questions. I realised later that I had asked something that you had previously answered so thanks for your patience in responding. I'm glad you are doing so well. It's always good to know about success stories as yours and I expect that there will be people who will want to continue with follow up information if you're of a mind to share (that is how are you 6 months/ a year from now and are you still following your routine).

Again thanks for the reply.

 

[Snowdrop]

I will say that I still have some deep rooted anxiety from the past 8 years. I don't know how to deal with that yet. I will have the anxious feelings without thinking/worrying, which is hard to understand. Maybe it's because i am unconciously worried about my mum? I don't know. The only thing that i've found that helps is long walks. I'll get back to you if i get rid of it.

You are not alone there. I believe many here have experience with anxiety. My anxiety is transient and situational. Inevitably linked to overextending myself.

Also, if you go to the forums page and scroll down to resources there is a google search site link you can use for anxiety that might find you some helpful resources for dealing with anxiety if you are of a mind.

 

[TigerLilea]

Everytime she comes down with a virus or infection she becomes bedbound for a few weeks and then gradually improves again. She is still able to work most of the time, but has a lot of sick time off.

This is how I am, also. When everyone else around me is sick with a virus that lasts them for a couple of days/a week, I'm sick for weeks, if not months before I recover. My CFS started with a cold that lasted for over six months due to two infected teeth I wasn't aware of as I didn't get any tooth pain. I'll go to my grave knowing that a virus is somehow responsible for my having CFS.

 

[MeSci]

You are not alone there. I believe many here have experience with anxiety. My anxiety is transient and situational. Inevitably linked to overextending myself.

Also, if you go to the forums page and scroll down to resources there is a google search site link you can use for anxiety that might find you some helpful resources for dealing with anxiety if you are of a mind.

The standard site search is also useful. It's on the right near the top. You can choose to look for threads/posts that have 'anxiety' in the title if you wish.

 

[MeSci]

This is how I am, also. When everyone else around me is sick with a virus that lasts them for a couple of days/a week, I'm sick for weeks, if not months before I recover. My CFS started with a cold that lasted for over six months due to two infected teeth I wasn't aware of as I didn't get any tooth pain. I'll go to my grave knowing that a virus is somehow responsible for my having CFS.

How would that happen? I'm not familiar with infected teeth causing colds or being due to viruses. Not saying it can't happen; I just hadn't heard of it.

 

[TigerLilea]

How would that happen? I'm not familiar with infected teeth causing colds or being due to viruses. Not saying it can't happen; I just hadn't heard of it.

Because I was so rundown from the dental infection, my immune system was unable to clear the cold virus. I had been complaining of sinus pain for the past couple of years. Once I was started on antibiotics for the dental infection the cold went away three days later. My dentist estimated that I probably had the tooth infection for several years.

 

[MeSci]

@james7a, I find it difficult to take information in via videos and audio, as my concentration comes and goes and I miss stuff. I also find it a very time-consuming way of getting info.

If you do find the time, maybe you could list the dietary changes and probiotics that you have used in a blog post, so that people can find it easily. Either that or in the information section of your profile.

I don't know if you've listed them in this thread, but it's much too long to search, especially if it isn't there!

 

[james7a]

@james7a, I find it difficult to take information in via videos and audio, as my concentration comes and goes and I miss stuff. I also find it a very time-consuming way of getting info.

If you do find the time, maybe you could list the dietary changes and probiotics that you have used in a blog post, so that people can find it easily. Either that or in the information section of your profile.

I don't know if you've listed them in this thread, but it's much too long to search, especially if it isn't there!

No animal products (Although I can't say it would effect my progress, I just choose not to)
No dairy (I believe it's the most important thing to cut out when chronically ill)
No Gluten( I plan to add this back at some point, however I'm not risking anything for now)
No Oils
No Soy (Although I had a fermented soy product which seemed fine, normal soy made me breakout)
No Peanut butter( Iused to love this but it breaks me out and doesn't make me feel very good, since I cut out bread I dont really need any butter)
No added sugar products
No artifical stuff like aspartame etc

This is a very restrictive diet but from my experience it was nessecary to have a limited diet for a solid foundation of healing. It helped me narrow my problems down to events throughout the day etc knowing that my diet wasn't the cause.

I currently take no probiotics however I am adding water kefir back in purely because it is a damn tasty fizzy drink The probiotics do not hurt either!

As always, feel free to ask me anything at all! I recently posted a video showing 15 things I've changed in my daily life so If you want me to state it as a list here I will do that @MeSci

 

[ukxmrv]

You're doing a great job of explaining it all @james7a

It was over 25 years ago that I set out to change my own diet and gluten/dairy were the first things that I cut out. That was for a year in the first attempt. Didn't make a dent on my ME symptoms sadly.

It still amazes me now when I meet new patients and they haven't looked in this area. It seemed so common amoung patients back then to tackle their diets but maybe something was lost along the way. There seemed to be a lot more allergy testing in hospitals then and more ME patients being diagnosed with new and tested allergies.

Many of the allergy clinics have been closed down now. I developed new allergies and asthma at the acute viral onset of ME and these were confirmed through blood and skin testing at a conventional hospital. This seemed to be common in the acute onset ME patients that got sick around the same time as me.

The Homeopathic hospitals in the UK (and I think Dr Myhill) still offer EPD treatment for allergies. I didn't seem to hear very much from new patients being offered that.

Then again we didn't have the antiviral drugs and immune modulators (apart from a few simple ones) and my own progress has been made through this area instead.

Things go in and out of fashion and new patients would find it hard deciding what to do first.

 

[Mij]

@james7a why no oils?

 

[james7a]

because they make my skin worse and make me feel worse. Also I don't see how oils are healthful at all.

 

[Mij]

Oh, I have to disagree with your statement re: oils. Good healthy oils are needed for proper brain function.

 

[james7a]

we will have to agree to disagree. The idea that before oils were produced peoples brains didnt function properly doesn't make any sense to me. I feel much better without them, personally.

 

[Mij]

I'm basing my opinion on facts.

If anyone is interested on how our brains developed and became bigger re: fats This is a very interesting read.
http://learn.fi.edu/learn/brain/fats.html

 

[james7a]

I'm basing my opinion on facts.

If anyone is interested on how our brains developed and became bigger re: fats This is a very interesting read.
http://learn.fi.edu/learn/brain/fats.html

I thought we were talking about oils. I didn't say No fat. If I follow this advice my skin will look awful and I will be sluggish, i'll skip the oil and stick to whole foods.

 

[Mij]

@james7a oils are fats. So you can tolerate fat but not oils, is this what you are saying? What type of fats are you able to tolerate? I'm not understanding what you are saying.

animal fats vs plant oils?

 

[brenda]

Oils are not whole food. The go off quickly also especially seed oils. I get my fat from ghee which l make from grass fed butter and consider oils to be unhealthy.

 

[james7a]

I stated no oils because I believe they're a unhealthful food. not that 'fat' is unhealthy. I believe wholefoods is the best way to get your fats. when I used to saute onions in olive oil or simply adding olive oil dressing to my dishes I was noticeably more spotty. Since not eating any oils i've seen a huge difference in my skin.. it's less oily for starters! What brenda said is what I am trying to say, oils are not a natural food.

 

[Mij]

Essential fatty oils from fish are healthy. Fish oils or eating fish.
Plant based oils could be what you are having problems with.