Sunlight Sensitivity

[Elph68]

Photophobia is a symptom of infection by nearly all species of Streptococcus ....

Just saying ....

Cheers.

 

[jann1033]

Sun makes my butterfly rash come out and my skin hurt. SPF 50 helps so that's not due to heat. Hot weather , shower etc makes me have pem instantly. I think I read some here taking sauna, that would kill me lol. Occasionally light hurts my eyes but not much recently. Taste and smell are very off sometimes. Not to be gross but smell nonexistent poop to the annoyance of my family since I constantly make them search for nonexistent cat poop lol

 

[Elph68]

Hydrogen Sulphide poisoning is a known cause for photophobia ...

http://www.hpa.org.uk/webc/hpawebfile/hpaweb_c/1246260030216

Cheers.

 

[Elph68]

Sun makes my butterfly rash come out and my skin hurt. SPF 50 helps so that's not due to heat. Hot weather , shower etc makes me have pem instantly. I think I read some here taking sauna, that would kill me lol. Occasionally light hurts my eyes but not much recently. Taste and smell are very off sometimes. Not to be gross but smell nonexistent poop to the annoyance of my family since I constantly make them search for nonexistent cat poop lol

Sounds like you may have an overgrowth of hydrogen sulfide producing bacteria in your nose and mouth ....

If you are inhabited with hydrogen sulfide and hydrogen peroxide bacteria, then heat would cause an 'opening of the pores' and an expansion of blood capilliaries ... giving you a direct injection of these toxins into the system ...

Better add to this as well, heat and exercise move toxins out of the lymphatic system ...

Bring on PEM .....

Cheers

 

[Tired of being sick]

Yes,

The best way I can describe it is:

The Sun is to Me
as
Kryptonite is to Superman

Soon as the sun hits me, my fatigue level sends the fatigue meter needle off the scale......

 

[Raindrop]

Where to start with this....!!!
I have great sensitivity to lights in general - all lights - but I am HUGELY bad under fluorescents. Can barely
go shopping anywhere, as all places have bright fluorescents everywhere. I wear huge brimmed hats and
dark glasses (and cool clothing). STILL, I start feeling that I am going to faint/pass out/ die from exposure. It can come on very suddenly, the weakness, the sweating, with a very weird anxiety I don't ever have otherwise, followed by the extreme faint feeling. It somehow,
despite all the covers I have in place, effects me severely. Can't tell you how many times I have had to run
out of stores, even while I am trying to pay the cashier!!!! Have not known anyone this bad. I am almost
getting phobic of going into many stores, yet I don't have any help so I must.

ALSO, bright lights in general (sunlight or indoor bright lights) can bring on migraines.

As far as sunlight, I feel severely ill with any direct exposure. This is complete Hell for me, as I live
in a very very sunny climate. I pray for clouds and feel like a new person when they exist. I "live
for shade" and have to dodge sunlight. It's ridiculous. I remember about 10 yrs ago when this
symptom began; its gotten worse ever since. I instantly feel "poisoned", very ill, terribly weak
and sometimes sick to my stomach. Have the huge hat and dark sunglasses on at all times in the sun and often just to walk outside my front door must have a full umbrella over me!!! I can't be in sunlight more
than a few minutes and sometimes.....especially if it is hot and the sunlight is real strong.....not even that!!!
It's really really tough living like this, with not being able to be in the sunlight that everyone around me
is CRAVING and loving!!! I am a freak. Before I got ill I used to love to sun bathe - That now seems like
another lifetime ago.

Can anyone help me understand why I would be just SO so sick in sunlight as well as fluorescents?
I mean it just seems ridiculously profound and getting worse all the time. I live in utter fear of
NOT having a huge hat and glasses and tons of water. (Like for instance if I were to have to be
transported to a hospital or stranded somewhere there are fluorescents or sunlight.
Oh yes, forgot to say that I am HUGELY unable to handle HEAT (over 73 degrees even) as well. I have 2 portable AC Units and SIX fans in my apt!!! The intolerance of Sunlight and Bright Light along with inability to adjust to Heat and the POTS/ OI are some of my worst symptoms.

 

[Raindrop]

To "Tired of being sick"....
yes, that was perfectly stated! Sunlight is like Kryptonite to me as well!

 

[Raindrop]

I find this a big problem too, but also movement on screen, fast panning etc. - another hate is camera lights flashing at celebrities, oh and a new show - that I didn't watch a web cam attached to someone, maybe a policemen, that was the show, this constant web cam picture bouncing up and down ughhh - I switched it off quickly, it made me feel sick within 3 seconds.

Maryb - I TOTALLY agree with EVERYTHING you described!!!
TV is getting harder and harder to watch with all the reality shows and web cams with so much movement.
If you watch things like "The Voice", I just go nuts. Like why can't we JUST hear the voices? Why does
there have to be SO much visual distraction/ bright flashing moving lights everywhere on top of the
singing!!! I am with you!!

 

[manna]

i like being outside when its hot and warm and lying on the ground but not in direct sunlight. i used to dislike the sun prior to getting properly ill. id guess that the more internal heat/inflammation you have then the less sunshine you can take, maybe. i'm sure its fairly common for some with me/cfs to do well in warmer weather or climates.

i swear by incandescent daylight bulbs for when you have to have light indoors. i tolerate that kind of light way easier than the usual incandescent bulbs or the really bad, flickering, energy savers, treble yuck they are.

 

[liverock]

A previous thread on this subject has produced one or two suggestions that have helped people.

http://forums.phoenixrising.me/inde...-treatment-for-light-noise-sensitivity.14858/

 

[Xhale19991]

Sounds like you may have an overgrowth of hydrogen sulfide producing bacteria in your nose and mouth ....

If you are inhabited with hydrogen sulfide and hydrogen peroxide bacteria, then heat would cause an 'opening of the pores' and an expansion of blood capilliaries ... giving you a direct injection of these toxins into the system ...

Better add to this as well, heat and exercise move toxins out of the lymphatic system ...

Bring on PEM .....

Cheers

So are you advocating exercise for CFS?

 

[Xhale19991]

Photophobia is a symptom of infection by nearly all species of Streptococcus ....

Just saying ....

Cheers.

How are these infections dealt with?

 

[Elph68]

So are you advocating exercise for CFS?

I am actually putting forward a reason why people suffer from PEM ... that is all ...

It seems that Lactic acid, hydrogen peroxide and hydrogen sulphide are distributed/moved around the body which poisons the system causing the crash ...

 

[Elph68]

How are these infections dealt with?

Well Xhale that is my next quest .... antibiotics in the right dose and of the right type .... followed by FMT, diet and maybe probiotics, although I am not convinced that they have any idea what to use ... I reckon todays probiotics actually make the condition worse .....

I do have a clinic in Europe that will develop a phage therapy solution for the unruly bacteria I am carrying, I am also a part of the FMT program in Sydney, but I believe it won't work unless I am given systemic abx rather than the non absorbing type.

Phage therapy offers a lot of promise, but you need to know exactly what bacteria to target ...

 

[Hanna]

Where to start with this....!!!
I have great sensitivity to lights in general - all lights - but I am HUGELY bad under fluorescents. Can barely
go shopping anywhere, as all places have bright fluorescents everywhere. I wear huge brimmed hats and
dark glasses (and cool clothing). STILL, I start feeling that I am going to faint/pass out/ die from exposure. It can come on very suddenly, the weakness, the sweating, with a very weird anxiety I don't ever have otherwise, followed by the extreme faint feeling. It somehow,
despite all the covers I have in place, effects me severely. Can't tell you how many times I have had to run
out of stores, even while I am trying to pay the cashier!!!! Have not known anyone this bad. I am almost
getting phobic of going into many stores, yet I don't have any help so I must.

@Raindrop - What you are describing here seems to be related to radiation hypersensitivity. Fluorescent lights are a plague for sensitive people.

. I struggle myself with them and don't go shopping (the wheelchair doesn't help in that case ). I havn't found any solution yet, just avoidance. Not easy!

 

[Elph68]

. I struggle myself with them and don't go shopping (the wheelchair doesn't help in that case ). I havn't found any solution yet, just avoidance. Not easy!

Photosensitivity or photophobia is caused by hydrogen sulfide poisoning .... Look at any material safety data sheet ... it is common knowledge

Hydrogen sulfide is produced by certain bacteria, streptococcus, enterococcus, citrobacter, prevotella, Kleibsella and others ....

The undetectable infection ....

 

[manna]

Photosensitivity or photophobia is caused by hydrogen sulfide poisoning .... Look at any material safety data sheet ... it is common knowledge

Hydrogen sulfide is produced by certain bacteria, streptococcus, enterococcus, citrobacter, prevotella, Kleibsella and others ....

The undetectable infection ....

sounds reasonable though doesn't fully illustate why.

i'd say the spleen is most likely involved...which of course also deals with infections. in chin. med. the spleen governs the flow of water around the body, which includes tears and the fluid in the eyeball. tears should be salty...remember when you used to get the dried salt crystals in your eyes in the morning...not no more as its unlikely that your lymph is alkaline and probably slightly acidic (caused bacterial fermentation of any unprocessed sugars/starches) and acidic tears sting (hydrogen sulfide is an acid) and make the surface of your eyeball sore. also poor regulation of water movement by the spleen can lead to odema, which can include the eyeballs as well as the ankles and cerebellum. inclined bed therapy is excellent for your eyes. it was one of the first things i noticed from it.
-------------------
are we talking skin sensitivity to sunlight as well? that could be the kidneys if so as they govern the skin.

 

[Elph68]

sounds reasonable though doesn't fully illustate why.

i'd say the spleen is most likely involved...which of course also deals with infections. in chin. med. the spleen governs the flow of water around the body, which includes tears and the fluid in the eyeball. tears should be salty...remember when you used to get the dried salt crystals in your eyes in the morning...not no more as its unlikely that your lymph is alkaline and probably slightly acidic (caused bacterial fermentation of any unprocessed sugars/starches) and acidic tears sting (hydrogen sulfide is an acid) and make the surface of your eyeball sore. also poor regulation of water movement by the spleen can lead to odema, which can include the eyeballs as well as the ankles and cerebellum. inclined bed therapy is excellent for your eyes. it was one of the first things i noticed from it.
-------------------
are we talking skin sensitivity to sunlight as well? that could be the kidneys if so as they govern the skin.

Hi Manna,

I have just put up a lot of information about what you are talking about in the undetectable infection thread. The alternative is that we are catalase deficient and being attacked by hydrogen peroxide from the same bugs ....

my tears just burn my skin now ..... horrible thing ....

 

[Xhale19991]

Does anyone experience hives?

I've been getting this one hive that pops up everyday in a random place on my arms.

 

[PennyIA]

Does anyone experience hives?

I've been getting this one hive that pops up everyday in a random place on my arms.

I was going to chime in here as well. I don't like bright lights... but bright lights only bring mild discomfort. Direct Sunlight however? That causes much more severe reactions to me.

About one year ago, I broke out in hives after a day in the sun, relaxing - switching between floating on a raft on the cool pool and soaking in the hot tub and drinking some alcohol. I didn't know why I'd broken out in hives, but have experienced enough 'new' allergies lately to assume that it might be tied to my sunscreen or chemicals in the pool. I knew I was overdoing it that day - ended up bedridden for about four days afterwards... but it was a nice treat.

BUT, all fall last year - if I spent more than ten minutes in direct sunlight, the hives would return. Sure enough, I spent a couple of hours trying to help with a school event today. I've got hives, headache, dizziness and nauseau. Part of it might be over doing it... but I was basically sitting in a chair and standing up periodically to direct the bike riders (they were transitioning off of a bike path through a parking lot and then someone else was guiding them back onto the path (going around construction site). But, I was in the sun and couldn't find a place to sit in the shade. And I'm miserable.

This has happened often enough for me to track that it's primarily sun exposure causing my symptoms because I can do the same type of thing and have far less impact on my health.

I was joking around, with someone at one time that ... go figure, it might be related to my VDR Taq genes... my body trying to tell me that there's no sense sitting out in the sun if I can't convert it to Vit D anyway... and lo and behold, it does seem like my reaction worsens when I'm low on Vit D (and haven't been taking my drops) and a little better when I'm at a better level. Totally non-scientific experience, obviously... but I have noticed that I seem to tolerate it a little better or for a few more minutes when my D vitamin levels aren't so terrible.