Vitamin D

[Jody]

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.

Started taking Vit. D on the offchance that this summer improvement had to do with sunlight.

Seems like it did.

I started on D a year and a half ago, in November, so after my yearly decline had begun. Improvement was so gradual I can't say I really noticed it until ... at Christmas time, I wasn't sick.

Unheard of.

Still wasn't sure it was Vit. D that was making a difference, but I kept taking it every day, more than the traditional medico's recommended dosage.

A few months ago I ran out and couldn't afford to get any for awhile. After maybe 2 weeks without it, I began to feel ... heavy. Heavy like gravity had changed. Like I was walking on a planet with far greater gravitational pull, and I could barely keep on my feet. My legs felt like lead and I could hardly lift them.

I was panting and gasping for air at the slightest exertion -- something I had not had for over a year. No energy. Head all messed up again.

All of this I'd left behind, or thought I had.

Remembered I'd stopped taking Vitamin D and a light went on.

Scraped together $7 and dragged myself uptown to the drugstore. Like RIGHT then. Didn't wait for anything.

Bought my fix.

Took some as soon as I got home, handing it out to my sick men here at home as well. (As I always do.)

Within 48 hrs, I felt some relief. Within a week it was as if the crash had never happened.

I still have symptoms I deal with though they are less, and less frequent, than they used to be. But this all-systems crash has not repeated itself since I started taking Vitamin D again.

I am spending time out in the sun every day, but I am still taking my supplement.

 

[Jody]

Here's an article on Vitamin D and the benefits of the sun --

"Breakin' the Rules, Layin' in the Sun"

http://www.ncubator.ca/Breaking_Rules_Laying_Sun.html

 

[helsbells]

After loving the sun shine all my life I actually started getting worse in the sun these last four years and so actually try and avoid D :-(

 

[Jody]

Hi helsbells,

Welcome to the forums.

Sorry to hear that the sun is bad for you. What a shame that is.

Just goes to show how complex and diverse this illness is, we are all affected differently in so many ways.

 

[Tony]

That's a bummer re sunshine. I know lots of ME/CFS people have a problem regulating temperature (just as MS folk do) so I'm wondering if it's the sun or the heat that's a problem.
I went through a few summers where the heat knocked me around a bit but my thermostat works better now so it's not such a problem.

 

[Jody]

I also used to have a tough time in heat and humidity -- especially humidity when my symptoms were bad.

Something else that used to happen to me and doesn't anymore -- it's hard to describe. If I went for a walk, even just 10 minutes, and it was a sunny day, by the time I would get home, and for quite some time after I got home, my vision was ... funny.

It was like there was a wash of white light over everything. I don't know, like everything was overexposed, like in a photo.

It sounds pretty but it was actually fairly unpleasant. Eventually it would fade after I was back inside.

Doesn't happen anymore.

 

[Frank]

That's a bummer re sunshine. I know lots of ME/CFS people have a problem regulating temperature (just as MS folk do) so I'm wondering if it's the sun or the heat that's a problem.
I went through a few summers where the heat knocked me around a bit but my thermostat works better now so it's not such a problem.

Doesn't Cheney state this has something to do with microcirculation?

Btw he also states that Vit.D. orally is toxic. So out in the sun we go

 

[Jody]

Seriously? He says it's toxic?

Does he say how?

 

[Angel]

D3

Dr Mercola can't say enough about getting sunshine and/or vit D3. He doesn't recommend vit D, but always D3. I'd have to read his info again to tell you why, but I've noticed that shift in medical/health literature in the last two years. I use a liquid vit D3 and just add a few drops every morning to my "shake".
Two of my local Doctors also recommend the Vit D3, and in Florida I get my Vit D3 drops from them. One of them is Chantilly Health in Largo, FL.

 

[Jody]

Angel,

That's right, Vitamin D3. Thanks for pointing that out.

Vitamin D2 apparently doesn't get absorbed well by the body. Here in Canada D2 is added to milk, and a few other things. But it's D3 you want.

The supplements sold here are all D3, couldn't find D2 if you wanted to. And the labels all say Vitamin D, with D3 in small print in their ingredients.

I take 6,000 IU's a day of D3, and have for the last year and a half. I expect to take it for the rest of my life and I'm okay with that.

 

[Frankie Dene]

Vit D and sun

People with MS have found that 15 minutes in the sun is enough to give you the Vit D you need for the day, if you have most of your skin exposed. you must have direct sun, not behind glass. If the heat is too much, which it is for me, then do it in the morning, have only your underwear on. The sun is obviously a problem with those in countries with harsh winters as it doesn't give you Vit D. The sun is also good for mood and getting melatonin for sleep.

 

[Jody]

The sun is also good for mood and getting melatonin for sleep.

Frankie,

I also do my sunning in the mornings if I can, because later it gets too hot and I don't want to sweat.

I was reading about the other stuff the sunshine does for us, pretty interesting. Helps mood and tees up the daytime/nighttime thing for our bodies. Helps keep the, I think it's the pineal gland up to snuff as well.

As few clothes as possible, so the rays can have their optimum access, and also no hat at least for awhile, for the melatonin and pineal factors.

Also, no sunglasses at least for a short time while in the sun. Trying to remember, here, I think this is also to do with the pineal gland, keeping our days and nights on the right track.

Haven't read on this for awhile so I'm a bit vague on the details.

But I do remember that this whole sunshine factor is wonderfully complex and can do us good if we can hack being in the sun.

 

[SDD1244]

I have to agree with both Dr. Cheney's and Dr. Trevor Marshall's thoughts on vitamin D. I say this because when my illness took a turn for the worse, I was shielding myself from the sun. I also have had muscle testing done (very simple thing that alternative medicine practitioners and some chiropractors use).. and my body does not want vitamin D.

As crazy as it sounds, I have to support Cheney's research (and Marshall's).

Vitamin D Deficiency Study Raises New Questions About Disease And Supplements

http://www.sciencedaily.com/releases/2008/01/080125223302.htm

Low Levels Of Vitamin D In Patients With Autoimmune Disease May Be Result, Not Cause, Of The Disease

http://www.sciencedaily.com/releases/2009/04/090408164415.htm

 

[christine]

hi jody,

i was happy to see that you are a fellow ontarian! i've been reading the articles on your website, and I'm eager to know what it is that has helped you so much in the last few years.

I remember you mentioned acupuncture. I had heard years ago that there is a CFS protocol with acupuncture; just never tried it. Is this what you are doing?

I'm pretty bedbound until about 3:00 most days; then up for a few hours (to lie on the couch). I am doing better since I started artesunate and creatine early in June. Wearing compression garments (especially an abdominal binder) have also eased alot of suffering.

Christine

 

[Jody]

Hi Christine,

Welcome to the forums.

It's always nice to meet another Canuck.

I'm not familiar with a cfs protocol with acupuncture so I don't know if I'm doing it or not, but I can tell you what mine entails. I get some needles put in once a month by my naturopath Dr. Kelly Upcott. She leaves them in for, not sure how long really, probably between 15 min. and half an hour.

The first time she did a treatment, I felt quite cloudy in the head afterward, and that day and the next day had what I'd call full PMS symptoms. Unusual because I never tended to have the mood swings before and I'd been menopausal at this point, for a year. The next day, I had a full-blown period that lasted for a week, with lots of crying and the blues.

Told Dr. Upcott, and she said this was great. She said that the acupuncture had had a deep effect, right into the endocrine system, and this was a very good sign.

The next month, back to menopause once again.

It's hard to say for sure what ongoing effects are from the acupuncture, as I only get it once a month. But I noticed a certain bagginess and droopiness in my face that I had been appalled by over the last few years has lifted quite a bit. And I'd had big bags under my eyes and very dark under them before. I noticed a slight ... tightening? ... the next morning in the mirror, and each month I'd notice a bit more, till eventually I started looking for like me again.

Old, still but me.

Old injuries have flared up immediately after an acupuncture treatment, to eventually recede and then disappear. This has happened a few times, and sometimes the flareup will last a couple of months, getting better, then worse, then better again.

Bad knee, sore legs, and the longest lasting one is on the top of my head, a product of a car accident where I hit the windshield years ago. It had hurt for like 6 yrs after the accident and eventually went away only to be revived by the acupuncture. That one still flares every time I have acupuncture but not as intensely or for as long as it used to.

Incidently, when acupuncture (like some other alternative treatments) is going well it's not unusual to have old memories revive, and emotional reactions connected to the body area being treated and having the physical reaction.

One can also feel worse (sometimes a whole lot worse) before beginning to feel better. I have had this happen many, many times, with acupuncture and with some of my other treatments.

There's been quite a few things that have helped me especially in the last two years. I talk about a lot of them in my articles on Ncubator.ca. And we can certainly talk more about them here if you'd like.

Stick around, and tell me if there's something you'd like to know about. We can start anywhere. And I'm sure you'll be able to find some helpful stuff from many of our other members here as well, it's a great and diverse bunch.

 

[Jody]

I have to agree with both Dr. Cheney's and Dr. Trevor Marshall's thoughts on vitamin D.

SDD, I could not speak to their research or their conclusions, that is all over my head. I can only go by what it does for me. And what it does for me is keep me vertical, it has stopped my panting for air and feeling suffocated, had lifted the feeling of being under a heavier gravity than is normal for planet earth, and removed alot of brain fog and vertigo.

As with so many things relating to cfs, what helps one may not help another. Some people get sicker eating the diet that makes me healthier, for instance.

I am very glad I never read their material on Vitamin D, because I would possibly not have tried it. And I would probably still be in my bed every afternoon and evening quite unwell, if I hadn't tried it.

I think that as good as these guys are as doctors and researchers and as dedicated as they are, their research doesn't cover the gamut of symptoms and reactions in the whole cfs community, on this or any other issue. And back to the cfs mantra what works for one may not work for another ....

 

[susan]

sun exposure

Have been doing the main component of the Budwig cancer diet which is cottage cheese and flax oil whipped together. Dr Budwig said that the reason we burn in the sun is we dont get another Omega 3s in our diet and she recommends her cancer patients to get lots of sun while eating copious amounts of this mixture and their vegan diet.

 

[Jody]

Susan,

I have heard something similar about Omega 3 oil and the sun. And that a deficiency in Omega 3 is related to people getting what goes by the most lovely name of "liver spots".

People think they're an inevitable part of aging, but the research indicates it is a deficiency.

 

[Cynthia]

Maybe some of you are already on vitamin D. My dr. started me on this the first part of the year. He said that it has been found to help those with immune disorders...chronic disorders like ours. I've found that since I started it, and I take the D-3, I have less flu and cold symptoms. Just get on the net and look up vitamin D for chronic illness. There is a lot of info out there. It really does a lot for a lot of different things.

 

[bananaman]

What dose do you take Cynthia?