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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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A Remarkable Recovery Story

Discussion in 'General ME/CFS Discussion' started by Chris, Dec 6, 2012.

  1. beaker

    beaker CFS/ME 1986

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    My PCP went to a conference in Phoenix recently, where the issue of Vit D deficiency was a topic.
    He said that the rate of deficiency was the same in Arizona as it was in the Northeast. I was surprised. He said that
    heat(direct sunshine) avoidance and sunscreen are thought to be the biggest factors.
    I have no idea if this factored in this particular case, just some food for thought.
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    Maybe it's casual slow strumming more than playing. Like if someone is "reading" it doesn't mean they are reading at full speed. Maybe a book that takes most people 5 hours will take the fatigued person 25 hours.
     
    Wayne and taniaaust1 like this.
  3. mellster

    mellster Marco

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    Vit. D deficiency is widespread in the San Francisco Bay Area as well, with all that sunshine. I have completely gotten rid of sunscreen and try to expose a decent amount of skin to natural sunlight at least 20-30 minutes per day. It seems that most patients with CFS/FM have a hard time accumulating/producing enough Vitamin D (on top of the fact that the body produces less and less as we age), I am still trying to reach at least 50 ng/ml (my func. doc wants 60-80) and have not crossed 34 so far. So when I take my son to the playground I take my shirt off and sometimes people think I'm nuts ;) I am also steadily increasing supplementation, currently between 5K-7K IU per day.
     
    SickOfSickness likes this.
  4. taniaaust1

    taniaaust1

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    My newest doctor said they were going to be changing (in process right now apparently) the Australian D recommendation from 60 to 80 as they've found 60 is too low. To help me get mine up quicker he recommended me to take Thorne Brand of D which is 25,000 IU per pill (I think he told me to take 3 a week at a time.. Ive forgotten thou and only hence currently been taking 2.. Apparently taking a D dose in one hit once a week is just as good as taking every day to get the same over all dose according to him).

    Low D not only increases cancer risk but also increases the risk that we end up getting autoimmune issues (so he's wanting to get my D at 100 due to the ME)

    Thought I'd share this in case you are anything like me and dislike taking lots of pills. These ones now are so much easier.
     
  5. Chris

    Chris Senior Member

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    Hi, Beaker; it is clear from what Jan has told me that Paul did get PEM from any attempt at physical exercise. I think from my own experience that some mostly mental activity can still be done--I get severe PEM with all kinds of unpleasant symptoms if I overdo my physical activity, but can still, on most days, lie on a bed and read difficult material for several hours a day. I know that brains take up a fair % of the body's energy, and I cannot sit at a computer and write for very long without getting into trouble, but ... Best, Chris
     
  6. Hip

    Hip Senior Member

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    Continuing on the vitamin D hypothesis for Paul's cure:

    Interesting that the particular ultraviolet light wavelengths needed to produce vitamin D3 in the skin are 270-300 nm, and that these wavelengths are only present when the UV index is greater than 3.

    This means that the sunlight in Vancouver, which has an average UV index of 4, is just barely able to produce any vitamin D at all. Certainly none in the winter, when the UV index there will be well below 3.

    It would be an interesting experiment for Paul, if he ever returns to Canada, to try taking say 10,000 IU of a vitamin D3 (cholecalciferol ) supplement daily, to see if this keeps his ME/CFS symptoms at bay.

    I cannot find any articles that say that vitamin D3 produced by sunlight in the skin is superior to vitamin D3 taken as a supplement, so my guess is that supplements will be just as good as sunlight. (Though I sometimes break open a 10,000 IU capsule of vitamin D3 and just rub this oil into my skin, so that you have the vitamin D3 in the skin, as you would if it were made by sunlight.)

    It is interesting that in tuberculosis (Mycobacterium tuberculosis infection), vitamin D can speed recovery.
     
    SickOfSickness likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Tania, are you sure that was 25,000 IU from Thorne? I have only heard of doses like that being available by prescription and I only see Thorne 5000 available online. 5000 IU makes more sense as some are directed to take that high a dose daily.

    Sushi
     
  8. SickOfSickness

    SickOfSickness Senior Member

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    I have purchased Thorne 25,000 IU before. It was without a prescription. It's on their site here: http://www.thorne.com/Products/Womens-Health/Bone_Health/prd~D158.jsp
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  10. Hip

    Hip Senior Member

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    ggingues likes this.
  11. grosolo

    grosolo

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    I'm in the same camp here. I can relate to the physical exhaustion forcing someone to lie down for five hours. But not once in the seven+ years I've had this, have I had the cognitive ability to learn something like guitar...But again, it sounds great for the person in question, and I too am happy for him.
     
  12. SickOfSickness

    SickOfSickness Senior Member

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    Everyone is different, but I think many ill people can do more in the first 5 or 10 years. Sometimes not even realizing they are ill and 'pushing through' and doing more than they should.
     
  13. Chris

    Chris Senior Member

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    Hi, Hip; there are some who believe that Vit D from the action of UVB on skin is NOT the same as Vit D from supplements--see Mercola's discussion with Stephanie Seneff, a senior researcher with MIT, and a very smart and knowledgeable person, though not an MD:
    http://articles.mercola.com/sites/articles/archive/2011/09/17/stephanie-seneff-on-sulfur.aspx

    She has a blog on this, but don't have the link at hand, so maybe this will do for the moment. I am using a Sperti UV lamp to raise my own Vit D in this northern space, with some success.
    Best, Chris
     
  14. Hip

    Hip Senior Member

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    Very interesting Chris. So the vitamin D3 (aka: cholecalciferol) created in the skin from sunlight is in fact vitamin D3 sulfate, which is water soluble, and so can move freely around the body dissolved in the blood.

    Whereas ordinary vitamin D3 (as you get in a supplement) is fat soluble and requires piggybacking on the cholesterol (LDL type) in the blood in order to transport itself around the body. Cholesterol can sometimes be very low certain ME/CFS patients, so one might imagine that in these patients, oral vitamin D3 may not be adequately distributed around the body.

    This makes me think that all ME/CFS patients that have been tested to have low cholesterol might conceivably be at risk from low vitamin D, even if there is enough vitamin D in their diet. They may have insufficient cholesterol to transport this vitamin. In these low cholesterol ME/CFS patients, perhaps sunlight-derived vitamin D3 sulfate is the only way they can get adequate vitamin D, as this is soluble in the blood. This is just pure speculation; I don't know anywhere near enough about the dynamics of vitamin D3 in the body to say for certain.

    I wonder why you cannot buy vitamin D3 sulfate as a supplement. Vitamin D3 sulfate (aka: cholecalciferol sulfate) as a bulk chemical seems to be available from wholesalers: see here.

    Another option to consider is getting hold of the active form of vitamin D, namely calcitriol. However, calcitriol is a potent substance, and is a prescription item; you cannot buy it as a supplement.


    By the way, I found this UV index calculator. If you click on your location in the world map shown, this calculator will give you a graph of the UV index of your location by month of the year. You can see that for northern climes like Canada and the UK, the UV index is 3 or below for around half the year. When the UV index is 3 or below, you don't get any vitamin D synthesis from daylight exposure, so I read, because the vitamin D producing UV wavelengths are not present for light with a UV Index of 3 or less.
     
    anne_likes_red likes this.
  15. Chris

    Chris Senior Member

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    Hip, you raise tricky questions! It seems clear from, say, the success of the Innuit, that humans --or at least some of them--have evolved ways of using the Vit D found in fish and marine mammals. Vit D from cod liver oil helped many during the war years. But it is also true that here even in southern BC we cannot generate Vit D from the sun outside a window of about 4 months--May through August. Fortunately, there is usually a fair amount of sun during those months, to partly compensate for the dark cloudy gloom from November-March. But it is irritating to read Californians like Dr. McDougall saying that all you need to do is walk around in the sunshine for 20 mins or so! Maybe we should be eating wild salmon during those dark months...
    Interesting that one can buy the sulfate form wholesale--I guess someone must be using it--maybe to keep farmed animals healthy? And maybe it is healthy to have an annual change in the stored form of Vit D, a long term analog of melatonin levels during the 24 hour cycle?
    Here are a few passage from Kate Rheaume-Bleue's "Vitamin K2 and the Calcium Paradox" (she is using data from Weston Price mostly, I think):
    "He showed that K2 levels increased during the summer (when cows were eating more grass), while rates of death from heart attack increased." "Remarkably, 2010 studies confirm this seasonal variation in blood vessel calcification. In the northern hemisphere, calcified plaque on coronary arteries is highest in January and February, and lowest in August." "Cardiac mortality roughly follows annual Vitamin D levels but precisely follows vitamin K2 levels." (all p.101). We know that the two are closely connected; can we escape this annual dance with death by year-long supplementation through sunlamps and vitamin supplementation?
    Best, Chris

    Best, Chris
     
  16. Hip

    Hip Senior Member

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    One additional factor to consider in Paul's ME/CFS recovery through moving to Costa Rica is that, instead of, or addition to, vitamin D, it may be that the increased light levels in Costa Rica are playing a role.

    If an individual suffers from seasonal affective disorder (SAD), also known as winter depression, then the lack of light in dark northern latitude winters can cause the symptoms of SAD, which result from reduced blood flow to certain regions of the brain. SAD is present in a subset of chronic fatigue syndrome patients, and some researchers think that SAD and ME/CFS may share common causes.1

    As the average light level diminishes in dark northern latitude winters, then brain blood flow also diminishes in people with SAD. Reduce blood flow is already found in ME/CFS too, so perhaps ME/CFS is worsened when brain blood flow is reduced through SAD, in dark winters.

    By contrast, once the ambient light shining into the eyes exceeds a certain daily average level, brain blood flow is restored, and the symptoms of SAD are eliminated. There are in fact specialized light receptors on the retina of the eye that sense average ambient light levels, and these receptors determine brain blood flow. These receptors are called photosensitive ganglion cells, and they are different to the light receptor cells of the eye used in normal vision (rod and cone receptors). Photosensitive ganglion cells do not produce any visual output; their function is just to determine average ambient light levels.

    People with SAD often treat their condition by placing bright lights in front of them during the winter. You need to expose your eyes to a light level of around 10,000 lux for about 30 minutes a day in order to mitigate or eliminate SAD symptoms.

    However, moving to a very sunny location like Costa Rica is the ultimate SAD treatment.
     
  17. Chris

    Chris Senior Member

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    Hip, another interesting suggestion, but maybe more applicable to me than to Jan and Paul--seems he was pretty steadily down for 6 years or so, and Victoria from May-Oct is usually a pretty sunny place--sunny enough to have produced a very noticeable summer/winter rise and fall in energy levels if SAD was part of the problem. I do usually experience some of that, but not in an extreme form--I did buy one bright lamp, but usually forget to use it!
    Chris
     
  18. ukxmrv

    ukxmrv Senior Member

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    Just to say that I have low Cholesterol (both types) yet my Vit D levels have been OK in all tests so far. Must be an individual thing. Maybe it is because I come from a fish eating family and culture.

    Given, that I have been to Thailand and other sunny countries, even moved to stay in a sunny country by the sea to see if my health would benefit, I don't get any hope out of these recovery stories.

    There are just too many of them around and too many PWME do travel and try different things. I even joined a yahoo group years ago to discuss locations and the people benefiting from this effect were vocal but very, very few.

    There is nothing remarkable about a recovery (of a third party) who is a young person and well enough to travel and who had noticed that they are better in another sunny country.

    If it was SAD, vit D, sunniness, altitude for more than just a lucky few people we wouldn't need this group.
     
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  19. Hip

    Hip Senior Member

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    Hi ukxmrv

    I agree with you that Paul's recovery is likely quite specific to him, and that most people with ME/CFS are not going to improve to any great degree just by moving to a sunnier and warmer location. If this were the case, we would know it by now, since as you mention, there are plenty of ME/CFS patients that move to different countries to see if they improve.

    That said, Paul's story is still an intriguing mystery, and I personally find these biochemical mysteries more fascinating than any TV detective whodunit!

    --

    Another factor to consider is the constant hotter temperature in Costa Rica compared to Canada. Hotter temperatures will mean a lot more blood is diverted into your peripheral circulation. Might Paul have some chronic hidden infection in the peripheries of the body that caused ME/CFS symptoms, with this infection clearing up due to the increased blood supply?

    Also, hotter temperatures will lead to increased sweating, which in turn means the activation of the sympathetic nervous system that controls sweating. So there may be some shift in the autonomic nervous system balance.

    The far infrared light that comes from the sun in copious amounts in hot countries is another factor: far infrared has an anti-inflammatory effect (hence the anti-inflammatory benefits of far infrared saunas).

    Increased heat may also ramp up tetrahydrobiopterin (BH4) levels (ref: 1), which may be deficient in ME/CFS (ref: 1).
     
  20. Hip

    Hip Senior Member

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    I also have a SAD lamp (a homemade version), and also often forget to use it, even though I have SAD (and had it long before my ME/CFS). I tend to use my SAD lamp only when the winter blues hits hard, and then I use it every day for a while, until I start feeling better. Then I forget again!

    The interesting thing is that you don't have to stare at the SAD lamp for it to work. Even if the lamp is placed more towards the peripheries of your vision (like say on top, below, or to the side of your computer screen), it will be just as effective. This is because the photosensitive ganglion cells that respond to this light are evenly distributed across your retina, so no matter what angle the light comes in to your eye, it will still activate the same number of these cells, as long as the SAD lamp is somewhere within your visual field. So you can get on with using a computer, reading a book, etc while still being treated by the SAD lamp.

    (The even distribution of the photosensitive ganglion cells contrasts to the uneven distribution of the rod and cone cells used in human vision, the latter are strongly concentrated at the center of the retina, which is why you only have high resolution vision at the center of your visual field. But the rod and cone cells do not come into the equation as far as SAD treatment is concerned).
     

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