Re: Anything to do for photosensitivity?

[Guest guest]

Some people say Vitamin D helps photosensitivity.

Trina

Capel <kcapel@...> wrote:

I know I'm pushing my luck in the " Let's Get Outside " department, but I

just picked up one package of green bean seeds to plant, while I was at the

store today. I used to have huge garden things. Veggies, herbs, even

Chinese melon growing on my backyard fence. One year I hand-tilled the

entire middle of the yard and had 46 tomato plants going nuts all over the

place. It was wonderful!

It was also before my body fell apart big-time.

So here I am with one lousy package of green bean seeds I'd like to

plant...and photosensitivity...and wondering if there's any real help for

this problem besides dudding up in long sleeves and big hats. Is

there? Can I drink a gallon of aloe vera every week and have it do

something? Can I take a child's aspirin during the week, but only on the

days ending in " day, " and it will help? IS there anything out there to

help this, other than dressing up in a giant Hefty bag and saying Hail s?

I wanna have a garden again. Help! Is there any effective treatment for

photosensitivity?

the one in Champaign IL

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

,

I was going to recommend the children's aspririn, but only on days that

don't end in " day. " Then this reminded me how I used to work in the garden

late at night, with a headlamp on. That's the sign of a really devoted

gardener! It's much more pleasant to work when the sun isn't beating down on

you, anyway.

I can't do nearly as much as I used to either, sad to say.

Ellen

> so I garden after the sun goes down

> with my porch light. Maybe you can arrange a yard light? It's not

> quite as simple, but it's at least a cooler time to be outside, and

> works pretty well.

> Jill

>

>>Can I take a child's aspirin during the week, but only on the

>>days ending in " day, " and it will help? IS there anything out there to

>>help this, other than dressing up in a giant Hefty bag and saying Hail

>>s?

[Guest guest]

Oh dear. I thought you were going to tell me the aspirin might be

useful! Waaahhhh.

You guys...you mean there's absolutely nothing that might help? I

was already going to try to bump up the vitamin D to see if it will

help all the pain. Now I might have too much already?

I'm flummmoxed. And really honked off, too. I don't mind, so much,

acting like an eccentric vampire. It's the **feeling** like an

ecentric vampire that gets to me.

I just want a teeny piece of normal again. And a teeny garden....

>

> ,

>

> I was going to recommend the children's aspririn, but only on days

that

> don't end in " day. " Then this reminded me how I used to work in the

garden

> late at night, with a headlamp on. That's the sign of a really

devoted

> gardener! It's much more pleasant to work when the sun isn't

beating down on

> you, anyway.

>

> I can't do nearly as much as I used to either, sad to say.

>

> Ellen

>

[Guest guest]

,

If you want to do gardening again, you'll just have to embrace your inner

vampire.

Ellen

>

> I'm flummmoxed. And really honked off, too. I don't mind, so much,

> acting like an eccentric vampire. It's the **feeling** like an

> ecentric vampire that gets to me.

>

> I just want a teeny piece of normal again. And a teeny garden....

>

>

[Guest guest]

Hmmm. Hokay...thanks, Trina. More reading to add to the vampire's

computerized nightstand.

>

> Vitamin D levels are a controverial issue. Some people say a high

level of 1,25 D actually results from a *deficiency* of Vitamin D.

>

> http://lassesen.com/cfids/MarshallProtocolRisks.htm

> http://lassesen.com/cfids/recommended_levels.htm

> CFSProtocol/

>

>

> Trina

>

[Guest guest]

One thing that we have noticed that may work was **very gradually**

increase your vitamin D intake to 2-4000 IU/day.

Vitamin D is a major moderator of vitamin D and what happens with some

people that are significantly deficient is this:

You get sunlight (or light) and vitamin D is produced which then

allows the immune system to kick-in... and suddenly you may have what

may be a herx -- since the D is produced in the skin and the face is

where it is generated, the herx happens in the eyes and the head.

Slowly increasing the Vitamin D, allows the immune system to slowly

improve and thus less herx will happen from sunlight exposure (i.e.

the amount of Vitamin D produces is **relatively** small then)

You may wish to check past posts on CFSProtocol on people reports of

decreased light sensitivity.

[Guest guest]

Ken,

I'm wondering if getting a very bad bout of the flu the last 3 weeks

could be attributed to my increase levels of Vitamin D? Seriously,

I've never been so sick with a flu bug since my onset of CFS 14 yrs

ago (I never even caught a cold!).

My WBC has gone up too since increasing Vit D, now it stays in a good

normal range.

thxs

Nat

[Guest guest]

ah -- big smile ---

Getting sick from flu and bugs is the reality of recovery! It can ba a

major shock after many years of not getting sick.

The model is simple: most of the time when you get sick, it is not

DIRECTLY from the infection, but from the IMMUNE RESPONSE. If the

immune system is lacking one (or more) essential component, then it is

unable to attack the infection as hard (i.e. you don't get as sick, or

if majorly exhausted, almost no response). Hence, you may have gotten

every bug for the last 5 years -- but did not have a significant immune

response.

Taking vitamin D corrects one of these deficiency, hence you got a much

stronger immune response (aka got sicker). Our experience is that once

we got the Vitamin D corrected that other deficiency showed up (or

should I say, on Day 1, X was not deficient, on Day 100, X is deficient

because the immune system uses up X once it gets working...).

In our case, what we saw was that it took less and less Niacin to get a

niacin flush. Niacin is produced by the body naturally (see

http://www.diagnose-me.com/cond/C287925.html ),

" The conversion of tryptophan to niacin requires the presence of other

nutrients, such as thiamin, pyridoxine (vitamin B6), biotin, vitamin C

and iron. "

In our case, adding iron and tryptophan (amino acids), reduced the

niacin flush sensitivity.

NOTE:

Changes of niacin level impacts:

Zinc absorption

Iron/Hemoglobin

Coagulation (fibrinogen/ Plasma F1.2)

So you can see how fixing one item, often results in having to re-check

other items constantly.

>

> Ken,

>

> I'm wondering if getting a very bad bout of the flu the last 3 weeks

> could be attributed to my increase levels of Vitamin D? Seriously,

> I've never been so sick with a flu bug since my onset of CFS 14 yrs

> ago (I never even caught a cold!).

>

> My WBC has gone up too since increasing Vit D, now it stays in a

good

> normal range.

>

> thxs

>

> Nat

>

[Guest guest]

Ken, I have vitamin D3 (Cholecalciferol). Is the dosage the same for

D3 as for D? Thanks,

Vickie

> " <klassesen@...> wrote:

>

> One thing that we have noticed that may work was **very gradually**

> increase your vitamin D intake to 2-4000 IU/day.

>

> Vitamin D is a major moderator of vitamin D and what happens with

some

> people that are significantly deficient is this:

> You get sunlight (or light) and vitamin D is produced which then

> allows the immune system to kick-in... and suddenly you may have

what

> may be a herx -- since the D is produced in the skin and the face

is

> where it is generated, the herx happens in the eyes and the head.

> Slowly increasing the Vitamin D, allows the immune system to slowly

> improve and thus less herx will happen from sunlight exposure (i.e.

> the amount of Vitamin D produces is **relatively** small then)

>

> You may wish to check past posts on CFSProtocol on people reports

of

> decreased light sensitivity.

>

[Guest guest]

One thing that we have noticed that may work was **very gradually**

increase your vitamin D intake to 2-4000 IU/day.

Ken,

thanks for making that point. I should have mentioned that when I mentioned

taking mine. I did start with 400iu day, and then about every 4 days to 2 wks

increased it by another 400iu caps. I did notice my temperature rose closer to

normal (been 97 for decades) as I did this, but going slow like that, I did not

herx or have any unpleasant symptoms, quite the contrary, the reducation in my

FM and other pain levels has been wonderful, I never thought I'd see it as the

pain got worse every year.

Marcia

[Guest guest]

Yes,

D3 is the form that the body naturally makes. D2 is made from

vegetable sources and has been associated with Vitamin D toxicity

issue (it's also cheaper - hence it is often what is added to Milk)

and questions have been raised about it's ability to be absorbed.

Keep to D3.

>

> Ken, I have vitamin D3 (Cholecalciferol). Is the dosage the same for

> D3 as for D? Thanks,

>

> Vickie

>