The Recovery(ing) Stories #1 (Occasional stories from recovered or recoverying patients)
A new website/blog called Ncubator recently caught my eye. Jody Smith, the websites creator, has an unusual talent for explaining issues in a very personal, down to earth and clear way. The articles were just a delight to read and at times touched me deeply. (see If a Tree Falls in a Forest )
Jody’s really been through the wringer with ME/CFS; her symptom signature included tremors, IBS, difficulty standing, severe fatigue, weight gain, hair falling out, stabbing pains, dysregulated sleep, vertigo, etc. Along the way she had to stop working and close down a very productive website but over the past year or so she’s experienced a significant return to health. Naturally I wanted to know what happened. Interestingly, given the recent blogs on this site on gastrointestinal issues, addressing these played a significant role for her.
You’ve been sick for over ten years. You had an extremely productive Christian internet site that you loved and had to shut it down when your chronic fatigue syndrome became too severe but now you’re better – much better. You’ve started up a website devoted to chronic fatigue syndrome (ME/CFS). You’ve come a long, long way.. What’s made a difference for you?
Rest and a low-carb diet, were the first things. I figure I have food sensitivities that I hadn’t known about. Maybe even celiac disease though I don’t think my symptoms are as immediate and severe as celiac. Within 24 hours on the low carb diet the IBS symptoms were gone. And the mental fog and many of the physical and neurological symptoms greatly diminished. I could think much more clearly, and the swirling, numbing, tingling sensations were far less, just from my diet change.
When I went too long between meals, the numbness and tingling and fog would start to increase. I would eat some protein, and 20 minutes later, the symptoms would decrease once again. In my case at least, I don’t think it would be possible for me to become, and remain, healthy on anything but a low carb diet.
I should also mention, that fats are an important part of my diet too. Trying to live low-fat, before the Atkins diet, was disastrous for me as well. I use a little coconut oil, and alot of olive oil, and alot of butter. The small amount of other dairy products I use are always the highest fat content I can lay my hands on. I drink one tiny cup of coffee a day, and I prefer 18% cream.
Unlike the common misperception that low-carb must mean little or no vegetables, I eat any vegetables but corn and potatoes only sparingly, because they make me ill. And though I avoid most fruit because of the sugar and hence the insulin factor, I eat raspberries and strawberries. Blueberries are recommended too, I just don’t happen to like them. :-) And I’ll drink water with a slice of lemon in it. Without the skin because of the chemicals in it.
Changing her diet helped an enormous amount but it wasn’t the answer. For Jody it was a lot of things. Finding the appropriate activity level for her was a critical part of her recovery.
I think it’s essential. I don’t think someone with CFS can get better without it. Dr. Collinge’s 50% solution (using up only half your energy, letting the remaining energy help heal you) and the — I think it’s called — the 80/20 rule (adding a small amount to your normal activities without causing “post-exertional malaise..) – these two ideas help me to not overdo it, but also to gradually be able to increase my activity level safely.
I read about Ultradian cycle, and the suggestion to rest every hour and a half – 2 hrs.for 10 min. – half hour. This helps the old run-down battery, keeps me out of the red. Mostly. :-) If I start getting a body stone, a neurological buzz, and a brain fog, I know to try to get alone, lay down, even just for 10 min. can make the difference sometimes. I try to build some white space into my day.
Plus some nutriceuticals and supplements helped as well.
My naturopath Kelly Upcott put me on a tincture called Deep Immune that had among other ingredients, reishi, shitake and maitake mushrooms, astragalus, ginseng, licorice, … it tasted really vile, and the first dose sent me to bed within 2 hrs hurting from the top of my head to the soles of my feet, and made my whole face go hot and itchy. Good start eh? But that stuff 2x a day I think played a big part in the beginning. She said it was helping deal with viruses and bacteria plus adrenal support and some other stuff that I can’t think of right now. :-)
Omega 3 oil in liquid form helped with pain. Quite a few supplements helped over time. Vit. D made a dramatic difference for me. I’d been taking it for awhile and ran out. After 2 wks I was starting to crash again — something that hadn’t happened to me in some months. I went back on the D, and within 2 days the panting, dizziness, leaden feeling, and seasickness diminished considerably. Over the next couple wks I regained my lost ground again. And I have done nothing but improve for the past month or so. I am at present the healthiest I have been in a very long time.
I’m also taking adrenal support from Ashwaghanda, which is apparently more for women, it’s a hormonal thing. But I’ve seen Siberian ginseng work wonders for men.
I get acupuncture once a month. I take B6, B12, and a B complex. That’s some of the stuff that’s helped me.
That was an amazing website you had what are your plans for the new Ncubator?
Our first Ncubator was called Ncubator.com Christian Resource Directory, with 50 writers (all working for free — none of us made any money:-) I think 6,000 articles, a search engine and a forum. We got a million page views per month. Hard to have to shut it down but I was too sick by then.
With my brand new Ncubator.ca, I am going to talk about CFS. Alot. I want other people who are sick and desperate like I have been, to be able to find me and get some information and some comfort and encouragement, like I did from sites like yours.
Check out the new Ncubator site; it’s already got some great articles. I particularly like the articles under ‘What Worked for Me” and “With Apologies to the Actual Science” sections. The website shows the last article produced – click on the section title to bring up all the articles in that section.
- You can find Ncubator here.
- You can find Jody’s personal blog here
- Jody’s also been posting a lot at the new forums on the Phoenix Rising site. Check out what she’s been posting about here.