A Remarkable Recovery Story

[Wayne]

I think this is a remarkable story. Was wondering if anybody else has heard any kind of similar story, where changing locations made a drastic difference in health.

 

[Joly]

"The Locations Effect" is a phenomenon that is reported over and over again by CFS patients. Here is a whole board about the topic, for instance.

http://locationseffect.proboards.com/index.cgi?board=intro&action=display&thread=33

@Wayne there is this link from an earlier reply.

 

[ljimbo423]

I think this is a remarkable story. Was wondering if anybody else has heard any kind of similar story, where changing locations made a drastic difference in health.

I actually had a significant improvement in health before I knew I had CFS. I was diagnosed at the time with depression and anxiety and was waiting for disability payments.

Shortly after I got $7,000 in back SSDI payments, I started to improve A LOT. I was able to buy a car, and other things. Get around more, spend more time with friends, etc. My outlook on life improved dramatically.

I even started jogging very slowly, about a mile every other day! The best reason I can come up with for these changes is because of how much better I felt about my life and how optimistic I felt! Maybe that's part of what happened in the story in the OP.

Whatever it was, it really is an incredible story!

 

[splusholia]

I feel unhappy with this story of recovery. Of course it's great for the boy that he recovered. He doesn't deserve a life of misery. I'm unhappy because it reminds me of the person who said "I had M.E but then I took Omega 3 supplements and it went away" sort of story.

I don't think this illness has much to do with Vitamin D either. There are so many Australian M.E patients and they have so much sunshine there. When I first got this my parents and doctors sent me to school and then pushed me for a holiday in Israel because "the sun and change of location would do me good." It made me worse.
I now live in a sunny hot climate. I find that *sensible* mild sunbathing for vitamin D just outside my flat often makes me need to lie down in a darkened room afterwards. Sometimes I even worsen after it. It is good to have vitamin D but it doesn't cure this.

Also before recovery the boy "played" guitar while lying down for *"5-6 hours a day"*. That is a heck of a lot. Even if he wasn't focusing during the strumming or just drifting off, it still sounds like he did not suffer the CCC criteria. His mother doesn't mentioned breaks inbetween "playing". He seemed to manage a terribly long flight, even if it was difficult for him. She mentions he had a 4 day crash afterwards. I'm not saying he wasn't ill, it's obvious he had a severe physical illness, it just sounds like it might be something different.

It could be intolerance to something in the boy's house like mold or something. In that case he did not have M.E. He had a severe allergy or intolerance to something in his home.

Does Costa Rica really have no people with M.E ?
More realistic gradual anecdotal improvements or proper published papers lift my spirits more and can teach us more than this.

I don’t think it can just be the sunshine. I also don’t think Australia is good for M.E. due to the ozone hole above it. It could be lots of other things - light, vitamin D, better water, magnetism, food, less pollution, etc...

I agree that stories like this aren’t always uplifting! But I still think it’s important that they’re reported...

 

[splusholia]

Costa Rica is a ‘blue zone’. I don’t know if that means anything, but it’s interesting when you read up on it...

 

[godlovesatrier]

I think people who contract Mono and display signs of CFS can be split into two groups. One can recover within 12-24 months in my experience, the other may go onto be sick for much longer. I can only assume that the first group does not have genetic abnormalities pre-disposing them to have a weaker overall immune system as in group two. In my case I don't think I ever got mono, in my teenage years I was always lethargic and struggling. I believe another group of us simply have a genetic makeup that pre-diposes us to gradually get worse as we interact with more and more pathogens as we age not to mention the bodys natural degradation as it gets older and becomes less energy efficient. The simple truth is you would expect this in your fifties with gradual declination, not in your teens, twenties or thirties. But the sub groups we are all fitting into are many and numerous that is for sure.

 

[Hip]

I think people who contract Mono and display signs of CFS can be split into two groups. One can recover within 12-24 months in my experience, the other may go onto be sick for much longer.

Yes, that's true: this study showed that 6 months after mono, 13% had been hit with ME/CFS. But by 24 months, only 4% had ME/CFS, which indicates some recovered from their ME/CFS.

But in Paul's case, it may not have been mono, as the first post says Paul contracted a "mononucleosis type illness that did not test as mononucleosis". Also, several months later, there was a seconding flu-like illness involved (probably enterovirus, as this ME/CFS virus often causes flu-like initial symptoms).


Paul recovered within a week or two of arriving at the hot, sunny location of Costa Rica, but when he returned to Canada, his ME/CFS came back with full force.

So rather than recovery, it sounds like some factor present in this hot country is throwing his ME/CFS into remission — but the remission is maintained only while he continues living there.

Definitely an intriguing case.

Perhaps @Chris might have some updates on Paul's story, like whether he is still living in a hot country, and whether his ME/CFS still returns when he comes back to colder countries like Canada.

 

[godlovesatrier]

Yes and this definitely show up anecdotally within the community. I've seen several people who got the positive mono diagnosis and then went onto make a full recovery. I really don't think this is a co-incidence.

But Paul's recovery while great is a trickier one to understand. We all know that some people report doing better in hot countries, the Lyme disease warrior blog lady (I forget her name apologies) made a full recovery too. I know from my own personal experience that diet, sunshine and Lyme herbs can't get you to this level of recovery. Ironically other herbs do help but they are incredibly expensive. With beneficial supplements and herbs I must be at around £200 per month. Although I now can't take high doses of andrographis paniculata as much like ginseng it causes terrible hunger pangs. In Andro this is caused by the stomach acid being increased, in ginseng I am not sure what the direct action is. Even so it makes it hard to tolerate the herbs in large doses for long periods without putting on large amounts of weight as the months go by.

Even so to get back on topic living in a hot country has interested me for a long time, as it really does seem to help a lot of people and I wonder if it would for me. Even so last year in the UK we had 3 to 4 months of very high tempreatures and my health was overall better, but relapsed in June so I don't think it's all it's cracked up to be.

 

[zuperhero]

Hello,
I also had some improvment after moving to other country. I was in moderate cfs for years after mononucleosis infection, i was hyperactive before the illnes, so despite the fact that my overall energy level decreased i was still far more active than typical person, living almost normally(i had ibs-like symptoms, temperature lower than normal, twitchings of muscles, maybe some other things that is hard to measure ).

All of the previously mentioned things were a bit anoying but there were not causing a huge dump in quality of my life. The only thing that was bothering me was problems with upper respiratory tract- every time that i was doing very drainning training sessions (sometimes i needed a few of them in a row to induce the problems) i got sick(at least i was thinking im getting sick).

Of course i had no idea that im having cfs, so i thought that training sessions reducing force of my immune system to such low level that im catching colds. What actually happened was probably was that high amount of pro-inflammatory cytokines(produced by pem not actually virus/bacteria infection) creating flu-like symptoms like headache, running nose, cough, etc.

Those infections were strange from the beging becouse there were no esr/crp increase or change in white blood cells and they last really short like 2 or 3 days maximum(what as i said- suggest that infection was not infection at all and was produced by cfs-agitated immune system )

So getting back to my story, I moved from northern Poland(near Baltic sea) to Malta(the island on mediterranean bellow the italy). 'Infections' disapeared imediatelly and i was training hard for about 3 years without problems, what is interesting when i was comming back to Poland for few weeks holidays i was always getting 'infections' even after one training. Nonetheless depite the fact i was living in Malta i slowly declined in general health, so im much worse overall but we wont ever know if i would decline faster in poland.

diffrences between distant places that i was thinking about:
atmospheric pressure
temperatures
humidity
'chemicals' in food
water from sewage system
diet paterns
behavioral/action paterns
pollens in air(becouse of diffrent plants)
species of mould inhabiting certain region


In my situation i don't see clear explanaiton, since i was living my life in malta really similar to one that i was living in malta(diet, behavior, lifestyle, etc) *inevitably there were some changes but its hard for me to unfold my whole life to single factors.

What is more i was living in around 4 apartments in poland and the problems were happening everywhere so i dont think it is mould. I dont think its temperature case becouse summers in poland are hotter than winters in malta and i still had problems during summers in poland and not during maltas winters.

Now that im back in poland i might try drinking botteled water (in malta water from sewage system was drinkable but not tasty at all, becouse of chlorine, so i was using only botteled water for everything whereas in poland i'm using tap water all the time), i will probably also try humidifiers to make air humid as its possible, as you can encounter in malta(which seems counterproductive because microorganisms tend to like humidity) i will update you on changes.

 

[Replenished]

It's because Costa Rica is hot....

Many with CFS have what some would call 'low temperature syndrome'. In that their metabolism is tanked, their system runs slow and cold, they are essentially hypothyroid with normal thyroid blood results. Being in a very warm country for a period of time will improve symptoms. It's why many feel so much better during the summer.

Look into Wilsons Temperature syndrome or on this site where this chap has written a protocol to correct low body temperature fixlowbodytemp.com

 

[Judee]

It's because Costa Rica is hot....

Many with CFS have what some would call 'low temperature syndrome'.

I do think this is a factor and why some of us can't get fevers anymore but I also still wonder if it could be that the sunshine and extra vitamin D is healing something as well. https://forums.phoenixrising.me/threads/a-treatment-that-helps-me-tremendously.87136/

So getting back to my story, I moved from northern Poland(near Baltic sea) to Malta(the island on mediterranean bellow the italy). 'Infections' disapeared imediatelly

@ChookityPop says something similar about going from his country Norway to Spain. He feels much better when he does that.

You may also want to look into the Coimbra Protocol. It's for autoimmune diseases and I think I read something about 39% (??) of us dealing with those as well as ME.

There is a FB page for that as well as doctors who have been trained around the world: https://www.google.com/maps/d/viewer?mid=1fATZJUEhOsYYJdBY41h48FBkLaQ&ll=35.65283229999999,-97.47809540000003&z=8

Edit:

this chap has written a protocol to correct low body temperature fixlowbodytemp.com

He has a really interesting theory doesn't he? Are you trying that now? Let me know how it goes. I did try both methods.

Wilson's theory is very interesting too and seemed to work better for me but then I couldn't find a doctor to keep going with it so had to stop.

Plus, it did seemed to make my heart feel more tired. That may be because I was making my own "time released" pills. I was also using micro doses because I'm super sensitive to medications.

However, it still was something that seemed to make me feel better when I was able to get my temps closer to 98.6F or 37C.

My standard now is around 97.7F or 36.5C.

Edit: Hope I didn't sidetrack the thread with this post.