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#162070 - 05/27/04 08:27 AM Sunlight burns my ankylosing spondylitis
krishna Offline
Fourth_Degree_AS_Kicker

Registered: 09/28/01
Posts: 302
Loc: CA, USA & AP, India

Hello everyone,

Sub: Sunlight burns my ankylosing spondylitis.

I see people have issues reading my web site. Let me try to summarize it here:

* NSAIDS: My ESR increased/decreased during NSAID usage/non-usage. They didn't impact my AS. They are necessary evils during a flare-up.

* DMARDS: I tried Methotrexate for a brief period.

* TNF-alpha inhibitors: I turned down Remicade offer after my insurance approved it.

* Diets: I tried various diets(Low Starch diet/No Starch diet/Dr. Kalper diet/mitogen-lectin-free diet) religiously at different times. I noticed the symptoms increase/decrease based on the foods I eat. I measured inflammation (ESR) at various times and noticed the diets don't have any impact on my AS.

* Essential fatty acids: I tried them. My ESR did not drop. They didn't have any impact on my AS. Cod liver oil helped reduce pain/swelling to some extent.

* Vitamin D supplements: I was diagnosed with severe vitamin D deficiency, 25(OH)D. I tried the best supplements including cod liver oil, Bio-D-Mulsion recommended by Dr. Mercola . They didn't impact my AS.

* Sunlight: I carefully exposed to sunlight. The results are very impressive.

Let me know if there is anything wrong in my approach and conclusions.

If you ask me "Should I go out in sunlight today?"
My answer is "No. Long answer: If you are careless, you could kill yourself. I know two healthy people killed by sunstroke. I studied several areas (incl. sunlight) from reputed sources such as pubmed. I analyzed my self and in some areas did diagnostic tests. I studied the risks associated with a specific approach and estimated my safe limits. Then experimented within safe limits and measured ESR several times in addition to noting down the pain symptoms feeling/range of motion. Unfortunately the safe limits are different for different people."

The best suggestion I could offer to anyone is refer to Patanjali Raja Yoga which says some thing like this "Study, observe, analyze, conclude without any pre-conceived notions or karma. Karma poisons the conclusions."

Tomorrow I am flying across the world (>20 hr flight journey) and things are very hectic and I apologize if I don't respond to your post immediately.

I wish you a very happy and healthy life.

Warm Regards,
K. Krishna

(My website: Lack of exposure to sunlight is the root cause of my ankylosing spondylitis. Sunlight burns my ankylosing spondylitis. Excessive sunlight is deadly and can cause skin cancer, sun stroke etc.,. Safe limits are different for different people. My next challenge is to explore sunlight in depth and spread the knowledge.)








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#162071 - 05/27/04 09:09 AM Re: Sunlight burns my ankylosing spondylitis [Re: krishna]
Painindaas Offline
Silver_AS_Kicker

Registered: 07/17/01
Posts: 1426
Loc: Alabama (That's Alybamy for al...
I would not post this if I were not close to 100% sure that sun exposure makes my AS worse. I spend much more time outside in the Spring than any other time of the year. This is also the time my AS is always worse. Also, I have many Lupus-like symptoms from sun exposure, like extremely red cheeks and terrible headaches. But I love to garden, so I go ahead and work outside. If I didn't, then one of my true loves of life would be gone. This isn't meant as a trashing of your findings at all, just a caution to others that it does not work for everyone. Especially dual Lupus/AS patients need to be extremely careful with exposure to the sunshine.

Johnny

_________________________

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#162072 - 05/27/04 10:30 AM Re: Sunlight burns my ankylosing spondylitis [Re: krishna]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5974
Loc: Reno or SFLU Philippines


Hi, Krishna:

Have a great trip back to AP!

Certainly, your experiences have added much to our understanding of the diversity of factors involved in both health, generally, and especially related to AS; we have to give our bodies the greatest basic opportunity for health.

I did some sunbathing, based upon the information in the Cayce material. His biographer had RS into AS and Cayce suggested (in addition to a low starch diet and many other things) he both expose himself to, but also look at the sun for 1/2 hour every day (not directly into the sun, but allow unobstructed sunlight to stream into both eyes). The effect had something perhaps more to do with hormone modulation, than exclusively vitD. Maybe a connection between SAD (seasonal affective disorder) and AS, also.

Have you had your vitD serum checked post-sun exposure?

Thank You, for your observations...but I still don't know how to remove the obfuscating karma to avoid coloring our results!! I'm working on that!...

Best to You, ji
John

"Unfortunately, the soulís need for learning often brings about the full-blown disease. And it must be cared for creatively, or allowed to take its course."
William A. McGarey, M.D., Director of Medical Research, A.R.E Clinic.
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#162073 - 05/27/04 10:42 AM Re: Sunlight burns my ankylosing spondylitis [Re: Painindaas]
krishna Offline
Fourth_Degree_AS_Kicker

Registered: 09/28/01
Posts: 302
Loc: CA, USA & AP, India
Hi Johnny,
Thank you very much for the word of caution and sharing your experience.

Iam neither diagonized w/ lupus nor experienced any lupus-like symptoms with sunlight exposure.

I did a bit of research in the past with lupus(documented at my website. look at it for more details, if you are interested). Let me try to correlate your experience with sunexposure (iam know this could be wrong) and the speculative theories out there:

1. Sunlight can trigger certain latent viruses such as Epstein-Barr virus.
2. Epstein-Barr virus and lupus: Epstein-Barr virus is one of the most common viruses that infect humans, generally resulting in a very mild and brief illness in children. When EBV affects adolescents or young adults, it can result in infectious mononucleosis, a condition that results in fever, sore throat, swollen lymph glands and severe fatigue. Although symptoms usually stop within a few months, EBV remains dormant or latent in the body for the rest of the infected person's life and can become reactivated. EBV infection is more common in people with systemic lupus erythematosus (SLE or lupus) but it is not clear whether this is a cause or effect of a faulty immune system in these individuals.

More later ....

Rgds.,
Krishna




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#162074 - 05/27/04 10:50 AM Re: Sunlight burns my ankylosing spondylitis [Re: DragonSlayer]
krishna Offline
Fourth_Degree_AS_Kicker

Registered: 09/28/01
Posts: 302
Loc: CA, USA & AP, India
John Ji,
Namaste.
I did measure vit D post vit D supplements and sun exposure. It boosted to 32 for 8 ( 25OHD ). I measured ESR after vit D supplements. It was 96!!!! With sun exposure ESR dropped to 38 in say 1.5 months then to 22 in 1 month. So I concluded sunlight and not vit D supplements that helped.
Sunlight makes a huge impact on humans. It boosts vit D, impacts immune system, triggers latent viruses etc.,. More later Ji
Rgds.,
Krishna


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#162075 - 05/27/04 12:04 PM Re: Sunlight burns my ankylosing spondylitis [Re: krishna]
Amber_UK Offline
Magical_AS_Kicker

Registered: 09/30/02
Posts: 781
Loc: Suffolk UK
I do love the sun, but since the age of 19, cannot tolerate it.
I have PLE which is another immune disorder. My Dr told me that PLE can also occur as the first signs of Lupus (but that is fairly unusual). Any sun exposure;even a minute or two, brings me out in a rash. Now the summers almost here, I am having to wear factor 50 sunblock, and be fully covered up with clothes, and even then, the sunblock is only about 40% effective................


Amber


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#162076 - 05/27/04 12:33 PM Re: Sunlight burns my ankylosing spondylitis [Re: krishna]
Dakotadan Offline
Gold AS Kicker

Registered: 07/16/01
Posts: 3451
Loc: Tucson, Arizona, USA
Interesting...I was a swimming pool service and repairman in Palm Springs, CA, ...a desert community with summer temps well over 100 degrees F...for 18 years. I wore only shorts and a tank top. I would say I got my fair share of sunshine but I suffered the pains of AS. I fought my AS with a change of diet and haven't had a flare in 4 years. Interesting...


Pete





"Maybe the problems of two people don't amount to a hill of beans. But this is our hill. And these are our beans!"
- Lt. Frank Drebin


_________________________
Pete




[color:"green"] "Maybe the problems of two people don't amount to a hill of beans But this is our hill. And these are our beans!"[/color]

- Lt. Frank Drebin


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#162077 - 05/27/04 12:49 PM Re: Sunlight burns my ankylosing spondylitis [Re: krishna]
oakleaf Offline
Diamond_AS_Kicker

Registered: 09/21/02
Posts: 1763
Loc: MPLS, minnesota
just goes and shows ya that what works for one may not work for another...that is one thing about AS that is really a bear it is a catch 22 disease......oak


I am older then I look and I feel older than I am
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my little angels

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#162078 - 05/28/04 01:43 AM Re: Sunlight burns my ankylosing spondylitis [Re: krishna]
zark Offline
Colonel_AS_Kicker

Registered: 04/12/02
Posts: 2482
Loc: NSW, Oz
I have to say that I do like the sun, and that normally I feel better after abit of a walk on a sunny day. Also those hot dry summer days we get sometimes.. that feels really great :-) like having a long hot bath. However I do find that sun burn worsens my AS.

I would also like to point out that Krishna follows a very different diet to most people. He is vegetarian and, as I understand it, eats very little processed food. And as John already pointed out that the highly processed modern diet (Standars American Diet) has a huge effect on how lab rats cope with UV light..

cheers
z


"To live by medicine is to live horribly." - Carl Linnaeus, 1707-78
_________________________
what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)

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#162079 - 05/28/04 03:26 AM Re: Sunlight burns my ankylosing spondylitis [Re: krishna]
Cheryl Offline
Addicted_to_AS_Kickin

Registered: 09/05/01
Posts: 6762
Loc: Florida
I live in south Florida (tropics) so it's hard to avoid the sun. I use sunscreen every day, but also go out in the sun every day, swim every day but time the sessions to avoid mid day. Humans do need Vitamin D but 15 minutes a day is supposed to do the trick. But another caution for those of us on immune suppressants, we are at greater risk for skin cancer. And absolutely nothing, not diets, not NSAIDS, not MTX, not exercise, made much of an impact on my AS, didn't find relief until I went on one of the new immune suppressants. But following a low starch diet and getting plenty of exercise has helped me feel better physically if one discounts AS, which is being controlled by Arava. I work out at the gym four days a week, each session lasting about an hour and a half, and I swim 100 laps in my pool daily, which is about 45 minutes. I find if I miss gym time/swimming for a few days I have much less energy and can feel the mechanical damage in my back more.

Cheryl


My guy

If you can't be kind, at least have the decency to be vague. Author Unknown
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