Anyone Else get ill after exposure to sunlight - not just the heat

[endomeister]

Some herpes viruses are activated by the sun. Could it be your weakened immune system is having a hard time holding down these viruses that people without CFS usually do not have a problem quarantining, such as EBV or Cytolomegalo?

I think this is exactly right but I think the virus in question here may be HSV1.

@helsbells - Do you suffer from oral ulcers by chance? Are you HSV1 positive ? Your symptoms sound strikingly similar to Behcet's Disease to me (which I believe can be triggered by HSV1).

 

[rlc]

Hi all, for those getting adverse reactions to sun exposure or from taking vitamin D, the most common cause is that Vitamin D and Magnesium have to be in balance in the body.

So what happens in a lot of people is that when they are magnesium deficient and vast numbers of people in the western world are, if they go out in the sun or take vitamin D, the sudden increase in vitamin D throws the balance out and quickly brings on the symptoms of magnesium deficiency. Theres some information on symptoms of magnesium deficiency in this links.
http://www.calmnatural.co.uk/magnesium-deficiency
http://bodyecology.com/articles/magnesium_deficiency.php
http://lifestyle.iloveindia.com/lounge/magnesium-deficiency-symptoms-5033.html

This then leads to people avoiding the sun or not taking vitamin D which leads to the vitamin D deficiency never being cured, also if you are magnesium deficient then you cannot absorb vitamin D, this is known as Vitamin D resistance and no matter how much people take their vitamin D levels dont go up and the deficiency is never cured. The solution to all of this is raising magnesium and vitamin D levels at the same time.

Its all explained in this short article http://www.naturalnews.com/029195_magnesium_vitamin_D.html

Magnesium has been proven to be needed for over 350 biochemical reactions in the body and Vitamin D which isnt a vitamin, its a hormone has been proven to be involved in over 200 biochemical reactions. So if someone is deficient in both theyve got about 600 biochemical reactions not working properly in their body. (No surprise they dont feel well)

Both vitamin D and magnesium are essential for the immune system to work properly and clear any infection that have been doing damage as well.

Because magnesium is mainly stored in the body cells, testing for deficiency by blood tests is largely a waste of time, best source of it is green leafy vegetables e.g. spinach and silver beat, supplements can also help but the body can have difficulty absorbing it in that form so they need to be taken for a long time.

New research has shown that the reference ranges used by laboratories for Vitamin D are way under what they should be. Vitamin D3 should be between 50-80 ng/ml (125-200nmol) so a lot of people are being tested and told that its fine when its not. People are often being prescribed very low doses to treat the deficiency which are nowhere near enough to raise Vit D to the above levels. The vitamin D council recommends 10,000 iu a day to treat vit D deficiency but higher doses can be taken under medical supervision information here http://www.vitamindcouncil.org/about-vitamin-d/how-to-get-your-vitamin-d/vitamin-d-supplementation/ It also has information on pre-existing medical condition which you shouldnt take Vit D for and medications it may interact with

They also have more information on Magnesium here http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/

And other co factors needed to absorb vitamin D such as zinc, boron here http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/

Theres also a really good article about vitamin D that explains the modern research here http://www.thorne.com/altmedrev/.fulltext/13/1/6.pdf

Symptoms of vitamin D deficiency include extreme fatigue caused because you need vitamin D to absorb phosphorus, and you need phosphorus for your ATP to work properly ATP is like little batteries that are found inside cells that provide the cells with energy. Vit D deficiency also cause profound muscle pain that is frequently misdiagnosed a fibromyalgia, and poor concentration, poor sleep, depression weakened immune system, long term it is linked to causing a lot of cancers and auto immune diseases.

Unfortunately it takes years for modern research to filter down to the average doctor and most doc are completely unaware of all of this, including a lot of the CFS docs.

Im not saying that this is the sole cause of every ones health problems although for some it probably is, but if people are vitamin D and magnesium deficient getting it fixed will solve a lot of symptoms and improve quality of life, allow people to go back out in the sun and by getting rid of the symptoms caused by the deficiencies it may make it a lot easier to find the cause of the other problems, Ive been on this treatment the last six months and it has lead to a great improvement, and a lot of symptoms have vanished like palpitations, heart pain, dizziness, muscle pain etc and my energy has improved amazingly.

Hope this helps someone and there able to enjoy the sun again.

All the best

 

[rlc]

Hi, anyone getting rashes or blisters from sun exposure should get themselves to a good dermatologist, it may just be solar dermatitis, but it could also be one of the Porphyrias, like porphyria cutanea tarda, theres a form of Lupus that can cause blisters in reaction to sunlight and no doubt several other rare diseases that can do it as well, because most of these conditions are relatively rare most doctors no nothing about them, so the best bet is a dermatopathologist who specialises in these things, blisters in response to sunlight are certainly not in any of the CFS definitions and I have never come across it in any of the ME literature, so in my opinion I think it would be best to get it seen by a specialist and find out whats going on. But if youve been avoiding the sun because of it then you will probably need Vit D, Magnesium deficiency treated as well.

All the best

 

[endomeister]

I agree that vitamin D3 levels and magnesium can be helpful.

Fatigue in response to sun exposure sounds very suspicious for an immune response to me however. I suffered from this for years as a result of HSV1 (other viruses can produce a similar response). This is much more common than was thought in the past.

 

[Nielk]

I have the opposite. I feel much better in a climate with a lot of sun. I feel that sun exposure is healing as long as it's not too long to cause a burn. Maybe it has something to do with the sulphur thing? (another thread)

 

[endomeister]

I have the opposite. I feel much better in a climate with a lot of sun. I feel that sun exposure is healing as long as it's not too long to cause a burn. Maybe it has something to do with the sulphur thing? (another thread)

I used to get sick with fatigue and brain fog in less than 15 minutes in the direct sun....the sun FELT good...but left me ill for up to several days.

 

[rlc]

Hi all, this is from this page at the vitamin D council site http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/
It explains some of the symptoms of magnesium deficiency that are brought on by sun exposure and vit D supplementation

Vitamin D has no known side effects. If one experiences any of the following symptoms due to supplementing with vitamin D - or with sun exposure - a magnesium deficiency is most likely the reason why:
irritability or anxiety
nausea
headaches
insomnia
fatigue
muscle cramps/twitching
weakness
constipation

This new research shows how important proper vitamin D levels are for the immune system to function properly http://www.sciencedaily.com/releases/2010/03/100307215534.htm

Basically what they have found is that the T cells in the immune system, when they come in contact with a pathogen send out an antenna to find vitamin D, if they cant find any they are unable to activate and attack the pathogen. So in laymans terms having an immune system and no vitamin D is like having a Gun and no Bullets!!

This new research would appear to be a reasonable answer as to why infection rates for colds, flus etc rise dramatically in winter, vitamin D levels go down in winter so infections go up.

Personally I think its the reason why a lot of people get caught in the CFS trap, they have low levels of vitamin D and magnesium to start with because of western life styles, they then get an infection with anyone of the many pathogens linked to CFS, EBV, CMV etc, so they end up in bed for months their vitamin D levels continue to drop so they cant fight the infection, doctors almost never think if somebodys inside for months on end their vitamin D levels can only continue to drop so they dont treat it, so things keep going in a downward spiral, its impossible for the body to cure the infection without adequate vitamin D, more symptoms appear as the vit D and magnesium levels continue to drop, the doctor gets more and more baffled and runs every test apart from vit D and even if they do they use the old levels which are wrong and miss the diagnosis or dont give adequate treatment, and because hardly any of them know about the role of magnesium in vit D absorption, they often give vit D suppliments, but the vit D levels dont improve and the patient complains of symptoms worsening after taking it so the Dr backs away from treatment, leaving the patient to suffer from conditions that are very treatable if people know what theyre doing.

Unfortunately Vitamin D deficiency and Magnesium deficiency are not listed in any of the CFS criteria as conditions that need to be ruled out.

Anyone who is trying to raise magnesium levels needs to know that magnesium and calcium are antagonists, so having too much calcium in your diet will cause you to lose magnesium, its one of the reasons why magnesium deficiency is so common in the western world we eat a lot of dairy products full of calcium, so if you want your magnesium to go up reduce dairy products.

Celiac also can cause vit D deficiency along with a large number of other deficiencies so if youre Vit D deficient make sure you have been tested for celiac.

All the best

 

[rlc]

Hi endomeister, regarding HSV1, have you looked into extra virgin coconut oil and monolaurin which is a more concentrated version of it, HSV1 along with EBV, CMV and a large number of other viruses including HIV are lipid envelop viruses which means they have a lipid outer coating that protects them from the immune system, coconut oil contains a substance called lauric acid, that is also found in mothers milk and protects babies from viruses, it works by breaking down the lipid envelope of the viruses which leaves them exposed to attack from the immune system, ( of course youre going to need high vit D levels for the immune system to work properly) If you do a Google search youll find lots of info on it, its a food substance so its safe to take, and has been shown to dramatically reduce viral loads for a number of viruses.

However its important to understand the concept of viral rebound when taking any kind of treatment for viruses, viruses bread rapidly over a very short period of time (a few hours) so doses of any treatment have to be done on a regular basis say every six to eight hours, if the gap between doses is to large the numbers of the virus rebounds during that time and the treatment goes nowhere. They found this out with all the AIDS drugs if they gave the doses at to longer intervals nothing happened, but at short intervals it stopped the rebound effect and the viral loads go down.

Anyway if you havent looked into it already, you might find that it helps, a lot of people have found it very useful.

All the best

 

[endomeister]

Hi endomeister, regarding HSV1, have you looked into extra virgin coconut oil and monolaurin which is a more concentrated version of it, HSV1 along with EBV, CMV and a large number of other viruses including HIV are lipid envelop viruses which means they have a lipid outer coating that protects them from the immune system, coconut oil contains a substance called lauric acid, that is also found in mothers milk and protects babies from viruses, it works by breaking down the lipid envelope of the viruses which leaves them exposed to attack from the immune system, ( of course youre going to need high vit D levels for the immune system to work properly) If you do a Google search youll find lots of info on it, its a food substance so its safe to take, and has been shown to dramatically reduce viral loads for a number of viruses.

I have found that coconut oil makes me (and others with HSV1) ill. I believe it is because of the high arginine content. On the other hand, I have tried lysine and vitamin C to be effective if taken several times daily. Lysine: 6,000 mg in three divided doses. Vitamin C: 500 mg taken at the same time as each lysine dose (between meals).

I have also found it very helpful to raise my blood vitamin D3 levels - which were down to 17 or so at the start of testing a number of years ago; it is now over 65. Vit. D3 helps reduce overproduction of tnf-alpha which is the cause of my condition (Behcet's Disease). Along with supplemental curcumin and selenium, I've found that I've been able to arrest a very aggressive disease and find my energy level to be excellent once again.

 

[rlc]

Hi endomeister, sorry, must confess I had skimmed the previous posts and not picked up that you have Behcets, sorry to hear that!

When you say your Vit D levels are now over 65 is that in ng/ml or nmol, if its in nmol according to the new research your still vit D deficient, so maybe more treatment, might give you more improvement, seems to be a big link between low vit D and a lot of the autoimmune diseases according to the new research.

I know there are a lot of herbs that have antiviral affects, but they can have side effects and I have no idea about the interactions with Behcets, so I wouldnt like to recommend anything just in case, maybe if you can find a properly qualified medical herbalists they could sort out a good treatment for the HSV1.
Glad to hear youve had so much success treating the behcets, hope you keep improving!!!!

All the best

 

[u&iraok]

See, that's one reason why this illness is so difficult--it's so full of apparent contradictions and Catch 22s. How do you know if you need Vitamin D and should brave the bad reactions or if you're having a negative, damaging response and should stay out of the sun? You could just take D but then you don't get the full benefit of the sun.

 

[Googsta]

For me, it feels like the light literally drains me, as though I am IT'S energy source, weird I know! It doesn't have to be bright sun, in fact those overcast days are the worst.
I have always been an outdoors person, the one who loves the windows open & the wind in my hair but during a relapse I cannot tolerate it. It not only worsens the fatigue & brings on a crash but it also hurts my eyes & head.

 

[sela]

this is a very old thread, but i feel strongly that many of the people complaining of sun intolerance should look at porphyria. porphyria testing is problematic and political so a negative test is not conclusive. look it up and see if the symptoms match. most porphyrics also cannot tolerate certain drugs, that is how i diagnosed myself. there are psychological changes when having an attack . there is a kind reactive to the sun, and another kind that has more pain.

 

[xrayspex]

sela i have often wondered about porphyria for myself since I learned about it a few years ago.Why is it political to test for it? I have NEVER hada physician bring it up to me even though I complain about not being able to tolerate sun once its like 65 degrees out for years now and i have MCS bigtime. porp could explain a lot for me, and I also feel much better on high carb diet.I havent noticed purple urine tho and do get some mild skin rashes on face in sun but not all over body. I also didnt exhibit sun intolerance when I was a kid.

anyway curious why it is neglected to rule out in mainstream meds? I just figured its another complicated thing with expensive testing, they dont want to encourage clinics to get into that sort of investigation cus costs health ins co.s too much was my theory, plus no treatment for it except avoidance so cant make money in pharma off of drugs, like celiac. Is there more to it than that? I would love to do genetic testing for it but dont know how to start,I think I left a message once for a place in NY that does testing but they never called me back. and its pricey.

 

[rlc]

Hi xrayspecx, the main cause of the problem with getting Porphyria diagnosed is the belief that it is a very rare condition, and because of this most doctors no nothing about it, and even when they do run tests they often run the wrong tests, also with acute intermittent Porphyria you only fail the test if youre in the middle of a bad attack, so the tests often have to be repeated before they come back with a positive result.

So you have to go to a specialist who knows what theyre doing.

The blood, urine and stool tests are extremely light sensitive and any exposure to light will make the tests negative. The first time I had these tests done, I found that the lab didnt know how to do the tests and was sent to do the urine test in a bath room with light streaming through the window, (it needs to be done in complete darkness) and they are supposed to wrap the vials for the blood in tin foil before taking the blood, however they wrapped them afterwards which meant the tests were corrupted. Finally ended up getting the tests done properly by a specialists at the hospital.

Theres also 7 different kinds of porphyria, which all have different symptoms and need different treatment. So its complicated to diagnose

Although Porphyria has always been believed to be rare, the truth is they have absolutely no idea how many people get it, and estimates range from 1 in 50,000 to 1 in 500! So it would appear that it is probably undiagnosed at an alarming rate. It is also not on any of the lists of conditions to be ruled out in any of the CFS criteria, but it should be!!

Theres some good information on the Porphyrias here http://emedicine.medscape.com/article/1389981-overview

and theres a list of diseases that cause sun sensitivity here http://en.diagnosispro.com/differen...osensitivity-sunsensitive-skin/24828-154.html

All the best

 

[Annesse]

I saw that at least 3 people mentioned porphyria as the connection to sunlight intolerance. I will make it a fourth. If you read up on the symptoms of porphyria they will ring a bell for anyone that suffers from sun sensitivity. This was one of my first symptoms of lupus. Under the thread "A lack of proteases and CFS" I have been showing how the inability to digest proteins because of a lack of protease would lead to all of the symptoms of ME/CFS. Porphyria can be added to this list. Here is some information on how the lack of B12 would lead to porphyria. It is a defect in one of the eight "cardinal" enzymes that interrupts the formation of heme and the subsequent build up of the toxic components of porhyria.

"In addition to the eight cardinal enzymes in the heme synthetic pathway, numerous other pathways relate to heme production including the production of the starting components succinyl-CoA and Glycine, iron metabolism, and generation of a proton gradient across the mitochondrial membrane. Two B-vitamin coenzymes are required for heme synthesis as well, and the microarray demonstrated that two key transcripts related to their availability are also induced during erythroid differentiation. Vitamin B6, Pyridoxal-5'-phosphate (PLP) is a required cofactor for ALAS2, and PNPO is the rate limiting enzyme in the vitamin B6 synthesis pathway. Defects production of PLP lead to sideroblastic anemia, while some X-linked ALAS2-deficient sideroblastic anemias can be treated with pharmacologic doses of PLP. Transcobalamin 2 (Tcn2) is the primary plasma transport protein for vitamin B12, and its absence leads to a megaloblastic anemia. Vitamin B12 serves as a cofactor for methylmalonyl-CoA mutase which converts methylmalonyl-CoA to Succinyl-CoA, one of the two substrates feeding into the heme synthetic pathway. Import of B12 requires endocytosis of transcobalamin 2, and its proteolytic digestion within the endosomal compartment, thus there is a need for continued synthesis of the transporter."

 

[Johnskip]

I loved to lay out all my life in the sun for hours and hours now if I lay out 15 minutes I feel like death and dehydration and I'm going to faint even with great nutrition and proper hydration

 

[NotThisGuy]

Last year I was able to to tolerate sun for hours. I used to sit in the sun for 5 hours straight or longer every day during the summer. I just felt better in the sun.
This year I suddenly cant tolerate any tiny amount of sun.
Both sunshine and vitamin D give me the same symptoms.
Makes my CFS 1000 times worse to the point that I am bed bound for 2 weeks.
Dizzines, vertigo, POTS, feeling like my heart will stop beating at any moment, severe fatigue, absolutely no strength, weird feeling like there is blood pooling in my brain/head.
It feels like as soon as vit. D is in my system my body/muscles stop recovering after being active.

I changed a lot of supplements this year but I also quit smoking.
But tbh when I came down with CFS I always had some issues with sun, only when I started smoking cigarettes sitting in the sun became beneficial so I'm quite certain that not the supplements but the lack of nicotine is making a difference this year.

edit: I'm not sensitive to bright light, heat or anything else. It really is just sunlight and vit. D, so I'm pretty sure its the UV-rays in the sunlight that are causing trouble by producing Vit. D

 

[gbells]

Hi everyone

This is such an odd one I would be really grateful if anyone else could comment. Was fine with sunlight all my life even through early-mid stages of illness. Then suddenly started to react badly. Incidentally I am not light intolerant in the house - I like really bright bulbs. Also I am not fair skinned. It can be just sunlight through the car or winter sunlight triggers vertigo, sickness, but more prolonged exposures and it doesn't have to be that hot just sunny, will trigger headaches, depression and gastric pain which can last several days poss longer after exposure. My consultant is adamant that it is just a side effect of dysautonomia. I got them to test porphyria - it came back neg. Is there a general explanation why sunlight rather than heat would cause such an exacerbation in fatigue etc.

Many Thanks for Reading:Retro smile:

Rule out Lupus.

 

[Billt]

My son went from being able to work in the sun all day to can't go in the sun for more than a minute or two at a time. Severe burning and over heating of his body if sun shines on him too long. Doesn't get sick just hyper sensitive to temp change