The Sun Is My Enemy – Living With Lupus And Genetic Vit D Issues

14 Jun

  
Lupus, Lyme, Genetics And The Sun

Since I was a kid I remember always hating to go into the sun. The heat from direct sunlight makes me so sleepy, fatigued, lehtargic & my symptoms go crazy. I sweat a lot and my body cannot regulate temperature so it overheats easy. But my body also runs a low core temperature at an average of 94-95 degrees. It scares all my nurses but I’m used to it, I’m always cold and under a blanket and use a ton of blankets on my bed and year-round flannel sheets. If I take the sheets off I get the chills. 

As I got sicker about 10 years ago I noticed one day while out fishing in a boat I had no shade and I was feeling so sick I couldn’t wait to get home. Later that night I had a bad sun burn on my face. A few days later my whole faced peeled off in one big piece of skin and it was thick like many layers of skin. It left a scar on my forehead that never went away. As I got sicker I noticed any UV lights made sicker, even the flourecent lights in big box stores made me sick. I always wear sunglasses and long clothing. 

When I go in the direct sunlight now I can feel this instant blanket of heat on me and I instantly want to lay down and sleep or pass out. I look for the shade and shade hop. Even in heat like a hot store or home with no air conditioning I can’t stay awake or can’t talk I’m so tired. In the sun my symptoms go crazy and I feel like I’m sicker than my normal sick was 1 minute earlier in the shade. It’s hard to explain. So I stay in my house and rarely leave the house. If I go anywhere I make sure there are buildings to go into. 

It’s also very important to have a lot of bottled water with you/me. I bring a giant smart water with electrolytes and regular water with me wherever I go and pain killers are a must. Remember to always stay hydrated even when you feel you are. 

I just saw I TV segment on EPP where people cannot be in sunlight and I couldn’t help but to think those with Lupus or Vitamin D genetic issues cannot be in the sun either. I’m told my body cannot convert normal Vit D or natural D from the sun. So I double hate the sun.  I just wanted to let others know that they aren’t crazy, there are many sun issues where we cannot be outdoors. Stay cool and I’m the shade. 

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5 Responses to “The Sun Is My Enemy – Living With Lupus And Genetic Vit D Issues”

  1. Rico June 15, 2015 at 12:56 am #

    From what I understand, a Low 25,D level along with a High 1,25,D level is common in chronic Lyme patients. It suggests that the Vit D receptors are blocked by too much of the inactive form, blocking proper synthesis, resulting in deficiency (which can lead to immune dysfunction).

    I found a study on PubMed that listed 2 prescription drugs and 2 supplements that help unblock them. Specifically, Bromelain and Papaya Enzymes help unblock the receptors. Since it’s hard to stock fresh pineapple and papaya, I just take the supplements every day. Bromelain can also help break up fibrin in the blood. (I took Boluoke Lumbrokinase for this. It definitely helped with my Babesia-induced sticky blood.)

    There’s also an article by a nurse who does the Marshall Protocol in Texas. While this protocol isn’t recommended for Lyme patients (it seems to be helpful for sarcoidosis), they have learned that a blood pressure drug called Benicar does a nice job of unblocking the Vit D receptors. (It lowers insulin resistance, too. They’re not quite sure how or why.)

    You can Google “Marshall Benicar” to see the articles on it. Here’s one from the Marshall Protocol’s own KnowledgeBase
    http://mpkb.org/home/protocol/olmesartan

    If you have high blood pressure, perhaps your doctor would take a look at these articles and be willing to let you try Benicar to see if it helps over time.

    I hope this is helpful for you!

    • 49er Bryan June 15, 2015 at 6:27 pm #

      Thank you, I appreciate this. I’m taking bromaline with quercetin but not sure the dose. My old doctor was on to my genetic Vit d issues but she passed away before I got the results. She had me on messilized (?) Vit D dropper form. I will look into what you said, thanks again.

    • backtoindia August 1, 2015 at 9:21 am #

      thanks, i have lyme and sun intolrance now…..Ill need to see what causes it in my case but i do have serrapeptase here wich works similarly to bromelain, perhaps i will give that a try…i get so incredibly sick after being exposed to bright sunlight ,especially in ocmbination with heat.so when the temperature goes up its a nightmair here…i also had a serious accident 7 years ago so its not a hundred percent sure its all from lyme disease in my case…but i guess it is…it also efects my breathing and one vocal ord is paralysed so that doesnt make it a lot easier..im ood in cooler weather now,especially when its cloudy lol but hot Sunny weather is scary. last time i ended up with heartissues in my sleep and seisures..and ended in the e.r.

  2. Brian June 15, 2015 at 7:17 am #

    This therapy was helpful for me & might explain your low body temperature: http://www.wilsonssyndrome.com/

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