Vitamin D

[Adam]

Jody, we live in the same area and there is NO SUN here! In Dec I get S.A.D. symptoms, Jan/Feb pain really intensifies, spring I go into almost a remission (I love the spring!!) and summer I crash again.

I live in the north of England - little sun in winter. My PEM is far worse in winter. The first two tears of my illness I had an almost complete remission between April and August. Now I have improved mobility during that period. I have often wondered if vitamin D was influencing this phenomena. Recently there was a study linking increased testosterone levels to raised levels of vitamin D (during the summer months). I think it was Judy Mikovits who referred to the interaction of the XMRV with a range of hormones. Therefore there could be some kind of link here. From talking to people on the forum I have found that most people are either (in most cases significantly) worse or better in the summer/winter months. For me it is quite a profound difference. Since I became ill in 1996 I have three mediterranean holidays. My mobilty improved significanly each time. However, on all three holidays I eventully walked too far and in an instant went from a normal gait to a 'who the hell is pulling the strings gait'.

I would be interested to hear your experience in more detail - and others too of course.

Adam in freezin cold grey and damp Sheffield UK

 

[Jenny]

Hi Adam

Me too. I'm usually a lot better in the summer, but not always - I few years ago I was in bed for the whole of August. It could be something to do with Vit D, but I've been taking 3600 (can't remember what units it comes in!) since last Sept and been very bad since October. Perhaps I should take more.

For me I think it may be something to do with more complicated things like pressure, humidity, air-borne moulds and other organisms that vary according to the seasons.

I've also found that holidays in hot dry places make me much better. I've gone on holiday several times to the south of France and could barely walk to the plane, then when I get there I'm almost well!

We had a bit of sun yesterday in London and the days are getting longer - must be good news!

Jenny

 

[Adam]

Hi Jenny

Thanks for the post. I hope more people will share on this one to see if there is any commonality here.

The link with Vitamin D and hormones and XMRV is intriguing though. If decreaed or increased levels of hormones trigger greater viral activity then the seasonal factor of illness severity in CFS/ME could be significant. It might be nothing of course and some of the other things you mentioned could be at play.

I am doing a bit of digging on Vitamin D and will start another thread I think. I wonder if there is anything about seasonal factors/vitamin D on the Forum survey which is been put together?

Adam

 

[Jenny]

Hi Adam again

If you're doing some research on Vit D this is a good start:

http://www.cpnhelp.org/vitamin_d_1

It's a page from the chlamydia pneumonia (Cpn) message board - a lot of ME and MS people on there say they have Cpn and are treating with combinations of abx and sometimes high doses of Vit D.

Jenny

 

[Alesh]

Vitamin D has to be one of the more unexpected heroes in my arsenal.

Every summer I would improve to something approaching normalcy. And every fall I would start to wilt and by Christmas be back into a chronic crash which worsened ... until summer. Happened every year for maybe 8 yrs or something.

I have absolutely the same experience: Slow improvement during the summer and sudden deterioration each October with the first upper respiratory tract fall infections.

 

[Alesh]

All the 11.6 years I dream about living somewhere in Egypt where the sun shines all the year. But they don't have chlorinated water in Egypt. So perhaps to move each autumn to the southern hemisphere, may be to Argentina.

 

[FernRhizome]

UKME: I don't know the toxicity levels, just know that 30 is a good optimum safe range for the blood test and in northern climes, the normal dose of 400 units is probably safe. But good to have it monitored....

 

[Alex]

Just wanted to mention I had my Vit D tested last week. It came back at 30 and my Dr. recommended supplements as she thought that was too low. I live in Northern California but find when I visit my mother in Tuscany every summer I feel so much better. The sun and warmth seem to make a big difference.

 

[Dainty]

I have absolutely the same experience: Slow improvement during the summer and sudden deterioration each October with the first upper respiratory tract fall infections.

I thought I should mention that I have the same experience without any exposure to daylight or sunlight. As in, all my windows are completely blacked out so that when the lights are out it's as dark as night indoors even on a bright sunny day. So I'm personally unconvinced that the pattern of generally doing better in the sumemr and then crashing in the fall is due to vitamin D levels or to the sun at all, since my experience is the same even with daylight/sunlight taken completely out of the picture.

 

[Alesh]

Hi Dainty,

I always thought it had to do more with the beginning of high occurrence of flu-like illnesses in autumn. I fell ill in June (1998)-it's about 20-30 C here. I was very sick since this date during the whole summer but I felt slowly better, the real disaster came in October with the first flu-like illness. October is the month when it gets suddenly cold here in the Czech Rep. I wonder whether I would have recovered rapidly if it weren't for the opportunistic infections. It seems to me that the disease only with the combination of these common colds led to my so far persistent disease.

 

[Alesh]

But on the other hand I remember that during one winter I lived for one month in mountains completely isolated form all people and it didn't lead to improvement. It is perhaps the combination of both of these factors: sunshine and scarcity of airborne pathogens.

 

[Carrigon]

Hi folks! Just talked to my bone doctor yesterday who is involved at the national level on Vitamin D recommendations to the FDA.

Apparently there are some kind of early mortality concerns coming out of recent research associated with really high D levels. He advised that 30 is the optimum safe D level right now. Sorry to post this, but I'd be careful!

400 units/day is certainly safe. But if you go above that you should probably monitor your levels via blood tests.

400 is insanely low for people with a deficiency and will bring no results at all. Alot of doctors recommend 50,000 per day for deficiencies. I don't know if I've ever gone that high with the shitake, but I do feel better on 8,000 and may even up it. I probably wouldn't personally go past 10,000. But it's also a money thing. I can't afford to go higher. If I could afford all the things that would make me better, I probably wouldn't be half as sick as I am. None of this is ever covered by my insurance. I can't even get them to pay for things that are covered.

 

[Alesh]

I would like to add to this discussion yet another thing. My experience is that sun and the summer weather almost always help me but any sunburn is highly deleterious. And the positive effects of sunshine need not necessarily be confined to the UVB mediated synthesis of vitamin D3. In fact, retina is a part of brain and if it gets stimulated by sunshine it can have many more effects on the brain as a whole.

 

[chrisssteeven]

I have recently been diagnosed with Vitamin D def. I had been suffering from being off balance (rocking like on a boat), extreme fatigue, muscle and joint pain just to name a few of my symptoms. I had to push to get a Vitamin screen. Turns out two vitamins were low to extremely low. Vitamin b12 and Vitamin D. I hope the medical community gets educated quicker than you mentioned. I am starting the Vitamin D at 50,000IU weekly. I cross my fingers that this helps the symptoms.

 

[brenda]

I have always been suspicious of the theory that Vit D difficiency is the cause of the autumn/fall crash because I would have thought that February would be the worst month and rather than a crash there would be a slow decline over the winter but I always crashed after the end of summer - till last year.

Last year I cut down on fruit - I mean really less than I would nornally eat. I would eat a lot in the summer as I love the soft fruits. And this time I did not crash. Macrobiotics say that raw fruit is too Yin and do not advise it.

 

[willow]

Seems bizarre to me that some practitioners say it's impossible to get too much. As vitamin D is fat stored wouldn't it be a while before you knew if you had too much, or too little?

I've only thought about this because i feel uneasy when I take low dose, almost hallucinagenic at moderate doses. I'm an additive free zone so, but I've tried various additive free brands.

Conventionally I should benefit becuase I have genetic vaiations that suggest problems with vit D but.....

I also tan quite easily for a Northern European. I seem to remember (just seem, can't be sure!), that Vit D synthesis from the sun is more efficient with pale skin people, as the skin darkens synthesis decreases. I've wondered if this is natures way of regulating vitamin D levels???? But then I do lots of wondering

 

[Advocate]

I have recently been diagnosed with Vitamin D def. I had been suffering from being off balance (rocking like on a boat), extreme fatigue, muscle and joint pain just to name a few of my symptoms. I had to push to get a Vitamin screen. Turns out two vitamins were low to extremely low. Vitamin b12 and Vitamin D. I hope the medical community gets educated quicker than you mentioned. I am starting the Vitamin D at 50,000IU weekly. I cross my fingers that this helps the symptoms.

I hope you'll be able to come back at some point and tell us that it did help.

 

[*GG*]

To Chrissteven,

What did your Dr say constitutes Vitamin D def. (Deficiency)? I read all kinds of things, so just curious.

Thanks!

GG

 

[kerrilyn]

I just got my blood spot Vit D3 results back and it was 23 (normal is 32-100 with optimal 50-80). I'm also overweight. Any thoughts on how much Vit D3 would need to be supplemented and how long it takes to turn things around, especially being overweight? I know with iron for example it can take years to see results. I'm not a big fan of needles, so I don't want to take sample regularly if nothing is going to happen for say 6 months?

Where can you find D3 at 50,000 IU? I think the most I've seen is 2000 IU.

 

[*GG*]

Kerrilyn,

I am not sure where I bought my 5,000 IU Vitamin D, perhaps at iHerb. The bottle says Econmy Size, Healthy Origins, 360 softgels and they expire Nov. 2012.

FYI

PS I believe I paid less than $20, $15 supposedly goes for $35. Healthy Origins is Distributed by: Pittsburgh, PA.