A Remarkable Recovery Story

[Chris]

This is the account of a remarkable cure of what seems well diagnosed ME/CFS, which I pass on to you from Jan, the writer. She is a member of our local, Victoria BC (Canada) group. I have not met her or her son, but have had several phone conversations with her, and we have exchanged many emails. I am convinced that she is an intelligent, caring and responsible person, and fully believe her story; when I suggested she post it, she asked me to post it for her, so here it is, in her own words.
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"My 19 year old son, Paul, no longer has Chronic Fatigue Syndrome symptoms! And it is because of Costa Rica. I had recently read that Michael J. Fox had lost his Parkinson's Disease symptoms while visiting Bhutan in the Himalayas. Perhaps there is something about certain areas of the world, for certain illnesses, and for certain individuals.​

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When my son was 12 years old in 2006, I planned a six month trip to Asia for us both, departing July 1, 2006. Before departure, he became ill with a Mononucleosis type illness that did not test as Mononucleosis. He was exhausted, weak and spitting up mucous all the time. The illness was with him about four months.​

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Close to our departure date he still was not recovered, so I delayed the flight for three extra weeks. He improved during that time, but was still feeling tired and weak. I had booked us in a resort on the ocean in Thailand for ten days to start our trip. While there, Paul recuperated entirely. From there, we backpack travelled, including two treks in the Himalayas in Nepal. Paul did fine and we put that bout of illness behind us.​

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We returned to Canada and two months after our return, both Paul and I contracted a terrible flu that was circulating; the worst flu I had ever experienced. We were both completely flat out for ten days, unable to move. Paul never came out of it. He continued to be exhausted. After about eight or nine months of this illness, he was diagnosed with Chronic Fatigue Syndrome. He could not attend school and began distance education. I bought him a guitar as this gave him something to focus on while lying down all day. He would lie on the couch and play for five or six hours a day. He is now playing at an advanced level.​

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As other Chronic Fatigue Syndrome patients likely know, we tried numerous, numerous possible cures; went to naturopaths, stopped eating wheat, ate lots of dark chocolate etc. etc. Nothing worked. After five years of social isolation, and inability to live a normal life, I started to worry that Paul could possibly be going into a depression.​

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I decided to take him to a change of scenery to lift his spirits, and chose a two week vacation in Costa Rica. We had visited the country ten years prior and I thought the wildlife and the climate might pick up his mood. It was a risk, as I was concerned that Paul might be too weak to leave the hotel room and that spending two weeks, isolated in an air conditioned room in a beautiful country might send him hurtling down, emotionally.​

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Upon arrival in Costa Rica, Paul experienced a crash. After about four days, he started going out more. I took him sailing and he was able to stand, steering the sailboat for 90 minutes without feeling like he had to sit. He said that his legs were not shaky. Normally with the CFS, his legs would shake after about ten minutes of standing. Into the second week, he was going on lots of outings, was standing taller and not slouching, and he looked radiant. He said that he felt wonderful. His description was that of a 2/10 level of exhaustion in Canada and an 8/10 level in Costa Rica!! I decided that we needed to return to Costa Rica for a lengthier time, to see how he would respond.​

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We returned to Costa Rica about five weeks ago and will be staying another four months. Once again, after about four days, his energy increased significantly. He started taking 15 minute walks on the beach, gradually increasing to hour long walks. He started doing sit-ups and is now doing about 120 (two reps of 60 a day). He has joined the gym in town and is working with a personal trainer to deal with his atrophied body.​

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He cooks, cleans, showers twice a day (used to have difficulty getting in two showers a week!). He has played in a band. He goes on outings daily. He has stated emphatically, that he feels completely normal. There is nothing he cannot do. There are no limitations upon him. He does not get exhausted. He is extremely happy and is making plans to attend the University de Costa Rica to become a music teacher in an International School here in Costa Rica.​

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A few days ago, I suddenly remembered the loss of his illness when we went to Thailand. I looked on the world map and noted that Thailand and Costa Rica are both at almost exactly the same latitude on the earth. The climate is similarly hot and humid and there are lots of beaches on the ocean. Both geographic regions also have jungle, although the foliage in Costa Rica is far thicker and greener and full of wildlife.​

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I am unable to explain why this has happened. It feels miraculous and watching the transformation was both baffling and exhilarating. Frankly, I don't really care why. The reason does not matter to me. All that matters is that my son is going to have a life; that he is happy again, joining in socially, participating in life and following his dreams. What more could a mother ask for?​

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This is, however, in my mind, an important experience and information to share. If it helps even one person to gain health again, then it is worth it. If it causes someone to investigate the reasons and build on understanding Chronic Fatigue Syndrome, that would be wonderful. I understand fully how it is to be living with an illness no one understands and for which there is no cure. Our cure was stumbled upon. Perhaps it will help others.​

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But of course my son's cure is something individual. I have also heard while being here in Costa Rica, of a woman who came to Costa Rica to live and contracted Chronic Fatigue Syndrome while living here. It is difficult to understand what has transpired for my son, while the same environment has had the opposite effect upon someone else. I have no answers, but consider this information important nonetheless.​

​

Jan"​

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I too cannot explain this, but maybe some of you will have comments on it. I can only reiterate that I believe it to be a true account.

Chris

 

[SickOfSickness]

So happy for Paul and Jan. I am glad for this information. The part that surprises me most is how quickly he recovered in either place. He just needed 4 days to get over the drain on his body from the travel, and then he was out and recovered. I know if I won the lottery, I would be visiting some other countries right away to see. But I would be surprised if many people recovered shortly after getting there. I think Jan is right that it's individual and only works for some people.

 

[penny]

That is wonderful for them!
Though I must say Costa Rica didn't do much for me, I'm sure the situations were very different though. We honeymooned there about 9 months after I became ill (before I had a diagnosis), and spent about 10 days between beach and city, and really had no change in symptoms. We had fun, but I was definitely sick the whole time. The worst was driving - the combination of rainy season washed out roads and fibromyalgia muscle pain was excruciating!

But I really think maybe Thailand is the key for me Just need to convince my bank account! At least it would be a fun 'therapy' to try!

 

[anne_likes_red]

Its always good to read of a recovery! Heartwarming to think a young guy has the chance of an active life back

Just wanted to comment... the story mentioned latitudes and Jack Kruse blogged in the last day or so about measuring a latitude effect as he's been travelling on and off for 6 months looking at barometric pressure, emf, and other factors. He doesn't say yet what he's measuring in terms of biomarkers. It would be interesting to know.(I'm guessing it'll include cell signalling, and neurotransmitters.) He seems to imply, I think, that a person's genetic heritage and adaptations as their ancestors migrated may make some people more fragile in their current environments.
http://www.jackkruse.com/does-where-you-live-actually-matter/

Just throwing that out there not because I think it will shed much light, but because other people may have made a latitude connection.
Anne.

PS FWIW I have been travelling the past few weeks and haven't noticed a change positive or negative! Not that I was looking this time.

 

[ThatBloke]

Thanks for sharing your friend's story, and offering that little bit of hope for the rest of us.
Sounds amazing, and amazingly inexplicable, like most things about CFS.
I live where there are jungles and beaches, so I don't think it was that which cured him.

But after reading Norman Doidge's book on neuroplasticity in the brain ("The brain that changes itself") it seems to me like at least some of CFS, in some patients, could be some kind of 'stuck' neural pathways that maybe can be reset by things that affect our neurology, like maybe some major life change etc like going on a trip to Costa Rica. I sometimes get the feeling that my neurology is stuck like an old vinyl record with a scratch in it and if I could just find the right thing to bump that needle back over to the next groove, it would carry on like normal. LOL, so far I have not found that magic thing.

Whatever, I am glad your friend's son found his magic thing and is doing well! I am so happy for him, and his Mom.

 

[merylg]

Maybe the recovery in a warmer climate had something to do with lesser impact from possible ?post-infectious Cold Agglutinin Disease and/or Raynaud's Disease.

http://www.coldagglutinindisease.org/coldagglutinins/what are cold agglutinins.htm

 

[ukxmrv]

Paul sounds from this description to experience ups and downs that are quite marked. For example he was described as improved before the 2006 trip and must have been pretty well to survive a trip to Thailand. An airline journey of this length would be beyond many patients.

It may be that the next flu sets him back again and this could occur in a country that is thought of as safe now.

I've tried different altitudes, climates, lived in other countries and apart from feel better if I am by the sea anywhere, no effect. Hot humid climates wipe me out totally.

There are so many things that need to be considered here from food, something in this home that he is reacting to etc.

Hope this continues for Paul.

 

[Hip]

It is definitely worth investigating this story in more details, Chris. There may well be something to learn here. Figuring out why Jan's son Paul got full remission from ME/CFS when he moved to Costa Rica (and Thailand) may be of benefit to everyone with ME/CFS.

Naturally the first thing that comes to mind, in terms of a causal factor for Paul's full remission, is that it was due to something in the local diet of Costa Rica and Thailand. It would be very useful to know what type of diet Paul follows in these countries.

With I bit of Googling, I discovered that the plantain is a common food item in both these countries, and that the plantain is in fact both a food and a medicinal herb.

The plantain appears to have a number of medicinal properties, including anti-inflammatory, anti-viral and immunomodulator properties. Plantain contains catalpol, which stimulates the production of adrenal cortical hormones. This increased the production of adrenal gland androgens has an anti-inflammatory ability, seems to help in wound healing, and increases the production of sex hormones.

Refs:
The miracles of Plantain
The Benefits of the Use of Plantain in Herbal Preparations

It would certainly be interesting to know precisely what foodstuffs Paul is regularly eating in Costa Rica.

 

[slayadragon]

"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

 

[Chris]

Thanks to all for encouragement, and more specially to those who have suggested interesting topics and sites for further exploration--have passed them on to Jan, and will explore further myself--many thanks! PR is a great resource!
Best, Chris

 

[anne_likes_red]

So, I googled quickly to get the coordinates for the two places I've had striking cognitive and physical improvement. (It's only happened twice and both instances I reported on Lisa's board back in January.)
One was latitude 36.52 N, and the other 36.25 S.
I only know my maternal line genetics and haplogroup. 36.2 N is where I can trace back to. Though I can't be sure that has any relevance..

I wasn't well enough for air travel at all for 15 years. I guess I feel fortunate to have had the experience of improvement due to location change. Good to keep an open mind. And hope.

The whole latitude thing has got me intrigued.

Anne.

 

[Hip]

The whole latitude thing has got me intrigued.

The increased sunshine levels in the more equatorial latitudes of Costa Rica, Thailand and the Nepalese Himalayas — all the places where Paul felt fine — may also be factors involved in Paul's remission.

Increased sunlight means you are getting much more vitamin D: high amounts of vitamin D are made when strong sunlight shines on the skin. It is the ultraviolet (UV) component of sunlight that produces vitamin D when this light shines on you.

Sunlight on the skin also increases levels of cholesterol sulfate, which is a signaling molecule, and also used in cellular membranes.

If you look at this global map of ultraviolet light levels from the sun, you can see that Costa Rica, Thailand and the Nepalese Himalayas are all located in the equatorial zone which has the very highest level of ultraviolet (UV) light — the zone where the UV index is 11 or more.

The UV index is a measure of how much ultraviolet light you receive from the sun in a given location. A UV index of 11 or more is a very high amount of ultraviolet light, compared to Paul's hometown of Vancouver, Canada, which this map indicates has a UV index of 4. And the summertime UV index in the Himalayas "was found frequently to exceed 15 on clear days and occasionally to exceed 20 on partially cloudy days". This Himalayan UV index of 15 to 20 is amazingly high. Ref: 1.

So the amount of vitamin D you would get in Costa Rica, Thailand and the Nepalese Himalayas is considerably higher than what you receive in Vancouver, Canada. And of course the hot weather in these equatorial locations tends to get people out and about into the open air much more, where they will receive a lot more sunlight anyway, compared to being indoors at home in a colder country like Canada. Plus you tend to "strip off" more in hot countries, wearing short-sleeve T-shirts and short trousers, etc, which tends to expose more of your skin to the sunlight.

(Glass windows in homes let in visible light, but glass blocks out around 90% of the vitamin D producing ultraviolet light from the sun, so you lose most of this natural vitamin D just by being indoors, behind closed windows.)

So all in all, being out and about in Costa Rica, you would experience a huge increase in your vitamin D levels, compared to being indoors in Vancouver, Canada.

Recovery is a magnificent thing, and I like to consider and investigate it.

 

[caledonia]

Looking at it from a methylation standpoint, there is some sort of toxin, virus or adverse stress he is experiencing at home, which he does not experience in Costa Rica/Thailand. The removal of this load is enough to allow him to bounce back.

It could be as simple as the house is outgassing formaldehyde.

The reason he got sick in the first place would be an accumulation of events - the virus compounded with the whatever toxin. He got sick, but his mom didn't because he either had a bigger accumulation of loads, or a reduced capacity to deal with the load.

I think it would be a good idea to check his methylation function and methylation SNPs to see what is going on there. He should be taking preventative measures (such as methylation specific nutrition and FIR detox) to make sure his capacity to deal with toxins, etc. are increased. Assuming he's eating a fresh whole foods diet with all the nutrients and he's out in the sun getting FIR rays and sweating, this may happen naturally.

Were there any other extended trips away from home in Canada, and did he feel better then?

Looking back, I had a similar experience, but not as dramatic, because I wasn't as sick. This was about 18 months before being disabled from ME/CFS. I was experiencing early MCS symptoms from a newly remodeled office - mainly feeling stressed, tired, anxious, etc. I went to Jamaica, to a beach location in a small town, and after three days, I felt so good and relaxed, I never wanted to leave. That's the last time I remember feeling that good.

 

[Hip]

It could be as simple as the house is outgassing formaldehyde.

Yes, that is a point: did Paul ever try staying in some other place in Canada for a few weeks (like a hotel or at a friend's house) other than his home? There can be serious toxins in the home such as carbon monoxide poisoning from a faulty gas fire or central heating boiler, or mold toxins from a hidden mold growth in the home. Sometimes these toxins can be localized to a specific room in the house, like a bedroom.

 

[Chris]

Hi; just a quick update--seems they have not been eating plantains, but much the same food they were eating in Victoria; the Vit D hypothesis remains in play for me, but I think Jan and Paul are too busy getting on with their newly changed lives to spend a lot of time searching into causes. So thanks for your input--I am going to increase my time before a UV lamp anyway--and I will keep you posted if there is any major change. And thanks again for interesting inputs! Best, Chris

 

[Chris]

Hi, Merylg--thanks for the suggestion to look at Cold Agglutin Disease, of which I had never heard. I don't think it fits with their story very well--Nepal, trekking in the Himmalayas, as well as on tropical beeches, but it has certainly started me thinking more about my own! Best, Chris

 

[taniaaust1]

Thanks for sharing their story, its an interesting one. If he'd only got a lot better once rather then twice.. I'd put it down to a probably chance change towards remission. Improving twice.. makes this more unlikely.

The most common cause of such an improvement would be his house in Canada has something in it which is keeping his health bad eg mold would be a very likely illness trigger.

I think I may of improved some when I moved to a place which didnt have mold issues in the past. (Hence why Im going to move again seeing Im back at my old place again and cant now exercise anymore again).

I think it would be good for this family to figure it more out so to make sure he avoids future issue again.

 

[Shell]

This is a lovely story and I wish them well. It does give hope knowing that some people can recover so well.

I couldn't help thinking of the Victorians who sent people to get "sea air" or for the wealthier "hot sea air" in Italy or France. A lot of the TB hospices were built in seaside towns as they believed the air was cleaner and better for patients.

Even I notice I feel better near the sea - but sadly I live as far inland as you can get in the UK.
The salt theory might play into this??

 

[taniaaust1]

This is a lovely story and I wish them well. It does give hope knowing that some people can recover so well.

I couldn't help thinking of the Victorians who sent people to get "sea air" or for the wealthier "hot sea air" in Italy or France. A lot of the TB hospices were built in seaside towns as they believed the air was cleaner and better for patients.

Even I notice I feel better near the sea - but sadly I live as far inland as you can get in the UK.
The salt theory might play into this??

There is some kind of salt theory actually out now. I dont know if anyone thou has tried it with ME. But they do a room which is full of salt and the person for therapy just is in there with all the salt. Apparently its helping things like asthma and other illnesses.

Many yogis and other groups believe that salt cleanses energy and hence aids healing of all things throu this.

 

[beaker]

I bought him a guitar as this gave him something to focus on while lying down all day. He would lie on the couch and play for five or six hours a day. He is now playing at an advanced level.

I can't imagine having the brain energy to focus to learn to play guitar, let alone strength to hold one ,even laying down, for 5 or 6 hrs at a time . And even if one could --- no mention of it causing PEM.
I don't mean to rain on anyone's parade. I think it 's wonderfully fantastic that this person is doing well.
It just doesn't sound like they ever met the CCC or the newer ICC based solely on the seemingly lack of neuro cog problems, and no mention of PEM.
of course, experimenting and traveling to costa rica sounds like a good idea ;-)