Is it possible to get your life back? Has anyone here done it?

[Alvin2]

We can start a new dance craze and call it "the starfish"!

Indeed

 

[gregh286]

isn't what you describe adrenal fatigue syndrome?..or a hormonal imbalance that lead to the so called burnout?

Adrenals are implicated but I think secondary to root cause of metabolic energy issue. This creating an adrenal stress in its own right. When i crash amino help me unbelievably. This points to addressing an energy issue primarily.

 

[dannybex]

I'm copying and pasting this as I've mentioned it at least a half dozen times.

I know at least a half dozen people personally who have recovered -- all in different ways.

A couple of them relapsed, but they're back to work now. The most famous is Ken Lassesen -- both he and his wife have recovered. Ken relapsed last year (edit: 2012), but is back at work again, and he's in his 60's. Another woman in our local support group also recovered in her 60's and has been well for at least six years. She hikes all over the place in the spring and summer, and skis in the winter.

And the most serious case is a woman who was sick for 16 years, 2 of those she was bedridden, and for seven years she was housebound. She's been well now for 7 1/2 years. She did a lot of different things -- a lot! -- both allopathic and naturopathic (or functional medicine-related) and went to eleven doctors (including some of the so-called 'big names' along the west coast) before finding a doc where she began to find relief. She got to about 80% and was stuck there for about 2 years until she found an endrocrinologist who found she had developed pituitary hypothyroidism, which when treated, brought her back to 100%. She was 42 when she recovered 7 1/2 years ago and has remained well, with of course a few dips, which should be a normal thing after being so ill.

 

[notmyself]

I'm copying and pasting this as I've mentioned it at least a half dozen times.

I know at least a half dozen people personally who have recovered -- all in different ways.

A couple of them relapsed, but they're back to work now. The most famous is Ken Lassesen -- both he and his wife have recovered. Ken relapsed last year (edit: 2012), but is back at work again, and he's in his 60's. Another woman in our local support group also recovered in her 60's and has been well for at least six years -- and she's also in her 60's. She hikes all over the place in the spring and summer, and skis in the winter.

And the most serious case is a woman who was sick for 16 years, 2 of those she was bedridden, and for seven years she was housebound. She's been well now for 7 1/2 years. She did a lot of different things -- a lot! -- both allopathic and naturopathic (or functional medicine-related) and went to eleven doctors (including some of the so-called 'big names' along the west coast) before finding a doc where she began to find relief. She got to about 80% and was stuck there for about 2 years until she found an endrocrinologist who found she had developed pituitary hypothyroidism, which when treated, brought her back to 100%. She was 42 when she recovered 7 1/2 years ago and has remained well, with of course a few dips, which should be a normal thing after being so ill.

thanks!!

 

[Gingergrrl]

and the most serious case is a woman who was sick for 16 years, 2 of those she was bedridden, and for seven years she was housebound. She's been well now for 7 1/2 years.

Thanks for sharing this, Danny, and lately these stories bring me great hope. I realize that this woman's case may have absolutely nothing to do with mine, but it still brings me hope. Thank you.

 

[dannybex]

Thanks for sharing this, Danny, and lately these stories bring me great hope. I realize that this woman's case may have absolutely nothing to do with mine, but it still brings me hope. Thank you.

You're welcome. I guess I'm fortunate in a way to have been part of a local support group with a decent number of 'survivors', as I'm sure I might find it hard to believe if someone else had related similar stories.

Everyone, please don't let anyone, especially an ancient statistic from the CDC, tell you you can't get better. It may be difficult, and may take a LOT of trial and error, but it is possible.

 

[jimmy86]

Absolutely possible.

The first months might be very difficult, but you can get better over time.

I am living an almost normal life, finished a PhD and work fulltime. No Sports, though, and occasional crashes. But overall my life is more enjoyable than that of many on this planet.

 

[notmyself]

Absolutely possible.

The first months might be very difficult, but you can get better over time.

I am living an almost normal life, finished a PhD and work fulltime. No Sports, though, and occasional crashes. But overall my life is more enjoyable than that of many on this planet.

i'm hunting for post like this ! that's what i like to see..did you had the symptoms of ME?..including neurologic ones?..noise sensitivity?muscle twitching? orthostatic intolerance?..or just fatigue and feeling bad all around?

 

[sharks]

Yes it is possible. Tackle the disease whatever it may be with antibiotics and/or antivirals (which ever applies to you). Keep the inflammation down with diet or medication. Get sleep to heal. Wash, rinse and repeat. I've been battling this for a year now. And I'm getting better. Sleep improved when tackling Lyme and EBV.

 

[eric_gladiator]

@sharks @jimmy86
I guess they have gone to the best doctors or something they have had to do to get better and not fall

 

[jimmy86]

@sharks @jimmy86
I guess they have gone to the best doctors or something they have had to do to get better and not fall

Not really. In 8 years I saw my CFS doc 3 times. Did not have money for more visits. No fancy treatment. I guess I was lucky to be a moderate/mild case.

I am not saying that this is the rule, don't get me wrong, but there is hope !

 

[dannybex]

@eric_gladiator, sometimes the so-called 'best docs' are very locked in to their various hypotheses and narrow treatment protocols. They're unwilling to try other things they're either not familiar with or that doesn't fit with their 'model', so they often actually have a lower rate of 'success'. And then there are just some who are incredibly overrated...

 

[sharks]

@sharks @jimmy86
I guess they have gone to the best doctors or something they have had to do to get better and not fall

Lol best doctors. I saw a rhumatologist who noticed the Lyme and EBV and I finally said screw suppliments because nothing was working and asked my dr for sleeping pills. I am also getting acupuncture. I'm slowly getting better.

 

[Gatorjake3]

Yes.............I am slowly getting my life back with EBV protocol after 20 yrs of feeling deathly ill. (taking herbal anti-virals and other supps and clean diet). I could definitely handle how I feel now for the rest of my life. I couldn't say that 2 yrs ago. With the way things have been going.........I expect to gain even more!

Can you mention which herbal antivirals helped you? And what kind of diet?

 

[Gatorjake3]

you've got to find your own, because you require tailor made treatments, you special unicorn you. Start researching your individual version of this disease.

Inester7 gives The Starting Points For Getting To Know Your Illness in post 17 on this page:
1. your immune system
2. your orthostatic intolerance
3. your friendly foods

anyone have the link to his post?

 

[ljimbo423]

anyone have the link to his post?

http://forums.phoenixrising.me/inde...-anyone-here-done-it.52968/page-3#post-881592
http://forums.phoenixrising.me/inde...-anyone-here-done-it.52968/page-3#post-881592
http://forums.phoenixrising.me/inde...-anyone-here-done-it.52968/page-3#post-881592
You can also click on the little arrow in the heading of the quote, next to the persons user name.

Jim

 

[Tammy]

Can you mention which herbal antivirals helped you? And what kind of diet?

PM'd you.

 

[gregh286]

Ditto, @Inester7. Too much Vitamin C / immune boosters: bad. I take Lactoferrin, but only at night, because otherwise it's too much inflammation to deal with.

Stuff that directly kills bugs, like colloidal silver? Very good.

Hi jaime.
Nice story. Like you ive recovered well also. Sit around 80/90. Its quite liveable like that. Just missing the final stamina piece that alludes me.

Interesting you take lactoferrin.
Its a very underrated supplement imo.
I use it as well but not daily.
Regards.

 

[gabriella17]

Hi @silky The only thing that really helped me was following a ketogenic diet. If you search ketogenic you'll find threads about it. I was housebound most of the time last spring, and when I went on the keto diet, within weeks I had a lot more stamina, which is how I was able to start working again. Unfortunately, I was unable to keep up with working 40 hours a week - couldn't do my job and keto at the same time, looking back I would have waited to get a job until I was better for a while instead of jumping right in. But it really did help!

 

[EtherSpin]

part of the worth of the continued existence of humanity to my mind is compassion and connection especially with people who have difficulties - there are people out there, plenty of them, who will make an effort to understand our struggles and to both help and to have a fulfilling relationship.

I found one and actually we dated in the year I got my first symptoms and were married before anything was major, back when it was episodic and I'd take time off work periodically then go back to work with normal hours.
progression was over 7 years (to present) from the time when I'd say 'yep, that was proper CFS by then' and my wife is very understanding, not totally but *very*.
from time to time I have to have a conversation where I explain that expectations have become a bit unreasonable because I have again (as we constantly do) gotten better at hiding dysfunction despite pain, cognition issues, exhaustion.

I haven't got any kind of fulfilling hobby or work-like activity right now because my gardening and cooking dropped off big last year and I'm hoping to boost it again this summer.

all that being said, *I* know what my struggles are and thus I know how much I put in with my kids and the older 2 are very compassionate as a result because they have a basic idea about CFS and it translates to compassion for kids at their school and in general (like to animals!)

I hope to eventually get efficient again as a cook, do hobby jewellry making again and maybe develop some other things i havent thought of yet, maybe a childrens book