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extreme photosensitivity-distraught and disgusted

curseisonme

Regular Member
#1
Hi,

I have been taking St. John's Wort on and off for the past 3 months...Recently I started taking a new brand (Eclectic Institute) at a dosage of 600 mg. (2 capsules) per day. After 4 days of this, I went to pick up party supplies with my husband and during the short drive home received maybe 5 minutes of sun exposure through the car window. I always wear spf 30 and a hat and have not had previous problems with SJW even during the summer, so the warm feeling on the right side of my face surprised me. As the night went on the pain became nearly unbearable and the next day I woke up to small red pimple-like eruptions and skin with the texture of sandpaper on that side of my face, only where the sun had touched. I immediately stopped the SJW. Two days later, we took a two hr. drive to visit my father-in-law for Christmas...as a precaution I shielded my face from the sun with my purse for the entire drive, except for when I had to put it down to get a drink for maybe 30 seconds. Sure enough, as we pulled into my father in law's driveway, I felt the burning pain, on the right side of my face where the sun had touched AGAIN...and as the day progressed the skin looked worse and worse. A few days later as the burn got better, I went back to taking the SJW, but at a dose of 1 cap per day...I felt the SJW does help me with my depression and I figured a lower dose would probably not produce such extreme photosensitivity...sure enough 4 days after starting up again I drove to put gas in my car around 5 PM, minimal sun, SPF 30...and sure enough got burned on the other side of my face...At this point I got extremely angry and had a huge meltdown...how could this possibly happen? How can this effect me to the point where I can't even leave the house for 5 minutes without getting severely burned? Of course I stopped the SJW again...today was day 5 of being off of the SJW and I figured it would be safe to run an errand during daylight hrs. (with SPF 30 and a hat...I had stayed in the house all week for fear of burning again and felt it was time to join the world...all was good until 2 hrs. after I got home I began to feel the all familar burning sensation of the right side of my face again and now the red eruptions have returned....I don't know what to do...I can't even leave my house or go near a window even five days after quitting SJW? How long will it take to be normal? How many burns will it take before this pretty 27 year old looks 45 all because of stupid St. John"s Wort? Any thoughts on my situation are appreciated as I'm really distraught right now
 

shy1

Senior Member
#2
It appears that the Eclectic Institute brand of SJW does not agree with you. Is there anything else you have recently changed (make up/diet/meds)? If not, you should stop using it immediately and discard what you have. And see your doctor. This is an extreme (allergic?) reaction and IMO you need to consult your health care professional.

You will want to search for posts from Vulpix Sapiens who also had an extreme reaction to SJW. Based on his experience it may be awhile before your body equalizes. You should not use SJW until your body heals....and don't use this brand again.

Other people may very well be able to use Eclectic Institute SJW without mishap. The brand may be fine for others but it is not fine for you. Sun senstitivity is a known risk of SJW use. BUT such an extreme reaction in such a short time period is cause to pause. Please seek medical attention.
 

curseisonme

Regular Member
#3
Thanks for the reply Shy1. I have not changed my diet, I don't wear makeup these days, and no meds. I would have no problem seeking medical attention but that would require me to leave the house...and I cannot do that without getting burned obviously. My husband broke his ankle in the past week so cannot drive me, and driving during the day isn't possible for me because of the sun...plus what can the doctors do except say stay off the SJW? I don't take conventional medicines and I'm sure they would just try to give me an antihistamine or something. I've been off of it for almost a week and still this extreme reaction to sunlight...and I am sure this is not a typical sunburn as sunscreen is no defense against it whatsoever, and all it takes is one direct sun ray for 30 seconds on my face to trigger it...sorry I am so angry right now. I wrote to the company a few days ago asking if their brand is perhaps delivering more potency that other brands per cap despite what the label claims, and have received no response.

I have searched posts by vulpix sapiens and haven't really found any useful insight so far but I will keep reading
 
#4
Damn! Really sounds like you've had a bad turn with SJW. Since you have other issues that coincide with your particualar situation it makes things doubly tough. Just my personal opinion would be that you need to do a complete body detox. I use Planetary Herbals Bupleurum Liver Cleanse a couple of times a year on the advisement of my herbalist. But, I realize you cannot even get out to get that. And, in all honesty, I have felt as good with a warm water/splash of organic apple juice/Tbsp of lemon/Tbsp of organic honey is as good a detox as you can get. Even apple cider vinegar works well as a detox. You really do not need all of these things, just be creative. If nothing else, just drink TONS of water(if distilled is not available, just boil a large quantity for at least 3 mins)....even to the point you feel you might explode....just for a day. The object here should be to flush all toxins out of your system as quickly as possible, even if it means getting up at night several times to go to the bathroom. This should only last for the first 24 hours. I never developed any probs with SJW,other than fatigue, but am always interested in what others experience with it. But, back to the topic at hand, and just a detox. You can even google "detox", "body detox", "liver detox", or "herbal detox" and get a gazillion hits. I am definitely NOT a medical professional by any means, but it sounds to me like your liver is NOT PROCESSING the SJW through your system(hey, this could even be a result of trans-fat buildup in the body). I'd suggest if nothing else, you just stick with a water, fruit, and raw veggie diet for 24-48 hours. With just that, you'll feel better, and feel better about yourself. My thoughts are with you!;)
 
#5
I don't want to be "preaching to the choir", but here is a very good article about "detoxing"......http://tuberose.com/Liver_Detoxification.html

I am a firm believer in "getting out the old before starting with the new". As the topic of "can I switch immediately", "can I add this while taking that", and similar things come up on the forum frequently, I just thought I'd add my own personal opinion. If it helps just one, it's worth it!
 

curseisonme

Regular Member
#6
Variable Image,

Funny enough we sound like one in the same. I have been using the Bupleurum Liver Cleanse for a month and a half now, ironically...I also follow an extremely healthful diet and do liver flushes occassionally....I also take ALA, N-Acetyl Cysteine, milk thistle, and a chinese herbal formula that my acupuncturist has me brew up.... so I guess I have the liver taken care of in that respect...but good to hear that someone else is on the right track with this! I think for some reason this St. John"s wort must have been more potent than other brands since I have taken other brands before with no adverse reactions whatsoever...it's as if I have overdosed on it when I haven't if that makes sense...but thanks for the very good advice and I appreciate your thoughtful reply...but still wondering when I can see go in daylight again
 
#7
curseisonme;5276 said:
Variable Image,

Funny enough we sound like one in the same. I have been using the Bupleurum Liver Cleanse for a month and a half now, ironically...I also follow an extremely healthful diet and do liver flushes occassionally....I also take ALA, N-Acetyl Cysteine, milk thistle, and a chinese herbal formula that my acupuncturist has me brew up.... so I guess I have the liver taken care of in that respect...but good to hear that someone else is on the right track with this! I think for some reason this St. John"s wort must have been more potent than other brands since I have taken other brands before with no adverse reactions whatsoever...it's as if I have overdosed on it when I haven't if that makes sense...but thanks for the very good advice and I appreciate your thoughtful reply...
but still wondering when I can see go in daylight again
Only once you have "detoxed" the offending element from your body.....I'd say 48 hours max.....IF YOU STICK TO THE DETOX REGEMINE!

Again, my heart is with you! It'll work! Believing in the "cure" means believing in "yourself". Keep in touch to let me know how it goes!
 
#8
I am so glad that you and I have reached a "conjuncture"? I do want to point out one thing in the "supplements" you are taking, and that is ANYTHING that has "acetyl" attached to it's name. For example "acetamenophine" it has been pointed out to me, is the MOST LIVER DESTRUCTIVE substance you can put into your body.....i.e., the liver just CANNOT process it! Do your own research, but this came to me from a reliable health-care professional(PHD, at that), who'd done a doctoral thesis on the "ace". I will dance around many concoctions before putting ANY "ace" things into my body. It puts the liver in overdrive, and incapacitates its ability to process other healthful substances, so be careful! Your liver is obviously NOT PROCESSING the SJW as it should....at least not in the current form. Get it OUT of your body, and start anew. God Bless!

Edited: BTW, DO NOT take antihisimines with your current condition, as they also build up in the liver and are transferred to other organs in your body, especially trans-fats. They just don't get eliminated!
 

curseisonme

Regular Member
#9
VariableImage,

I was totally unaware of the deliterious nature of anything with "ace" in the name. N-Acetyl-Cysteine is touted as a liver detoxifier and is actually used in E.R. rooms when people have overdosed on acetaminophen, so I thought that I was doing my liver good while taking it. I will stop taking it and see if I notice anything...

I haven't taken over-the-counter pain relievers, anti-histamines, etc. since I was a child...I have my degree in holistic nutrition and I'm probably one of the most anti-chemical, anti-pharmaceutical advocates out there...I was crying when my husband decided to give in and take vicodin for his broken ankle surgery but I force milk thistle on him. I butt heads with most allopathic doctors and that is the main reason besides the impractical nature of leaving the house why I don't want to seek medical attention for this...most likely I will be berated for even taking an herb in the first place, and second will probably just be offered some hydrocortisone or some other drug that only makes things worse in the long run...

As far as detoxing, I stick behind the fact that I have been detoxing for the past 5 days since being off the St. John's wort...there's not much else I could do as I feel like every day is a detox...my size zero pants are falling off of me at the moment because of all the "bad" foods I avoid including dairy, gluten, processed foods, eggs, etc...and the fact that my diet is so heavy in veggies so the prospect of doing an extreme juice fast or something else that would deplete my body further is not advisable...my acupuncturist has strongly warned me against doing traditional cleanses or even consuming raw foods as my body is in a weakened yin state as opposed to an abundant yang state..Apparently my raw foods craze of the summer just totally weakened me (from a TCM perspective).

Thanks for your awesome insight though...I'm sure the hypericin will clear out of my skin eventually...I think the irony of all this is that I have developed rosacea in the past year and spent the whole summer cooped up inside in fear of the sun and here I end up getting the "rare" photosensitivity reaction in the dead of winter (and in spite of my best efforts) to something that has been helping me cope with my depression. Hence, my screenname...that is how I feel lately. Thanks for listening
 
#10
I see ALOT of views on this thread but haven't gotten further responses...has anyone experienced ANY type of increased photosensitivity to St. John's Wort that is NOT PREVENTED BY THE USE OF SUNSCREEN? I ask this because from all the research I have read on the internet it is suggested to use sunscreen to protect against the increased photosensitivity that accompanies St. John's Wort but I can tell you that sunscreen is no defense against what has happened to me. I use a very good quality SPF 30 everyday and wear a hat and yet any small amount of direct sunlight (as little as 30 seconds) triggers a burning sensation on the affected skin for up to three days...I don't believe this is a traditional sunburn so I think St. John's wort is misrepresented as increasing risk of "sunburn", what happens is a very separate and unique chemical reaction that occurs under the skin when hypericin has been deposited in the skin and then sunlight hits the skin. It is not St. John's Wort lowering the sunburn threshold. My case sounds very similar to the hypericism seen in animals grazing on very large amounts St. John's Wort in the field, and as far as I know this is not supposed to occur in humans taking very low therapeutic doses. Also does anyone know what agency I can report my adverse event with this herb to?
 
#11
Curseisonme.......I seems that there is a certain kind of sunscreen that has actually CAUSED acute photosensitivity in some individuals. I know that I did a lot of reading on this issue prior to beginning SJW. I just figured forewarned was forearmen. Though I didn't bookmark much of what I read, I did find this article in my "search history". It specifically addresses this issue. There is ALOT of info in this article, and you may have even read it before. Anyway, here's the link.......

http://www.medical-journals.com/r04_113b.htm

Sounds like you need to make sure your sunscreen does NOT contain the two offending substances.:read:
 

laurie_lu

Regular Member
#12
Personally I don't think you're experiencing a sunburn. I think you are having an allergic reaction and it is showing up on the skin of your face similar to hives. The warmth of the sun aggrivates it.

Sunscreen should prevent the burns from happening. But maybe the chemicals in the sunscreen are aggrivating the "rash" on your face. This happens to my little girl when she has an allergic food rash and then gets sunscreen applied to her skin before going outside.

Besides....I was under the assumption that all automobile windows/windshields were UV protectant. I've never gotten a sunburn nor a tan through my windshield even when I was taking SJW.
 
#13
VariableImage;5296 said:
Curseisonme.......I seems that there is a certain kind of sunscreen that has actually CAUSED acute photosensitivity in some individuals. I know that I did a lot of reading on this issue prior to beginning SJW. I just figured forewarned was forearmen. Though I didn't bookmark much of what I read, I did find this article in my "search history". It specifically addresses this issue. There is ALOT of info in this article, and you may have even read it before. Anyway, here's the link.......

http://www.medical-journals.com/r04_113b.htm

Sounds like you need to make sure your sunscreen does NOT contain the two offending substances.:read:
That was a very good article...thank you for providing the link... I did not see where it was mentioned which two chemicals in sunscreen can aggravate skin conditions...I did see it mentioned that avobenzone and titanium dioxide are the two most effective sunscreen agents. I use a very basic and natural SPF 30 sunscreen by a company called Devita...no parabens, alcohols, and they use zinc oxide as the sunscreen agent and also an extract of a plant shown to assist in preventing damage by the sun's rays...I have read up on zinc oxide and it runs neck and neck with titanium dioxide in sun protection. I have been using it now for 7 months without problems so I doubt that it is the cause of my woes..at the moment I am still feeling burned and weary of leaving the house...I guess I will just wait it out in here and continue with my detoxifying supplements and hope my skin gets better soon
 
#14
laurie_lu;5298 said:
Personally I don't think you're experiencing a sunburn. I think you are having an allergic reaction and it is showing up on the skin of your face similar to hives. The warmth of the sun aggrivates it.

Sunscreen should prevent the burns from happening. But maybe the chemicals in the sunscreen are aggrivating the "rash" on your face. This happens to my little girl when she has an allergic food rash and then gets sunscreen applied to her skin before going outside.

Besides....I was under the assumption that all automobile windows/windshields were UV protectant. I've never gotten a sunburn nor a tan through my windshield even when I was taking SJW.
Hi Laurie my name is Laurie also :) I don't know what is happening with this burn...from the research I have done a photosensitivity/phototoxic reaction differs from a sunburn in that it occurs within a certain wavelength of visible light (not necessarily UV light), and can occur through a window. So in this way it makes sense that each time I have gotten "burned" it has been from light coming through a car window...from what I understand about the phototoxic reaction occuring with St. John's Wort, the hypericin concentrates in unpigmented skin. Once activated by direct sunlight, the hypericin begins an oxidation reaction that begins to inflame tissues and cause cellular damage...so it's kind of like a grenade waiting to go off under the skin but needs the light to pull the pin. Since sunscreen only blocks UV rays but not visible light, this reaction can occur whether one is wearing sunscreen or not. Being a fair-skinned scottish girl living in the Arizona desert who shuns the sun like the plague, if I had known that sunscreen was not protective against this prior to using St. John's Wort, I would never have gone near the stuff. It was only until this happened and I began to research hypericism in animals and also photosensitizing agents and reactions that I learned this little-known but critical detail. For those of you who have found sunscreen protective while using St. John's Wort, I would say that either you have more pigment in your skin than I do, or you do not have as much hypericin concentrated in your skin. Or you are just like me but never get direct sun on your face, even for like a second. What I find baffling is that this has only happened to me with this brand...I have been using SJW and driving in a car without so much as a tingle for the past few months and then bam! I can only conclude that this company is deceptively leading people to believe that their capsules contain between .2-.4% hypericin with an average of .3% when it may contain much more...people are not supposed to have this kind of extreme reaction unless they overdose and I wasn't even taking the full 3 caps per day. I guess I learned my lesson using an unstandardized brand...on the one hand it was grown organically and claimed to be more complete than any extract (plus no solvent residues from the extraction process), but because of the lack of standardization it probably contains an insane amount of active ingredient...I wish there were some recourse I could take but I should probably just let it go...buyer beware. I just wish I knew when it was safe to go in the car again without a bag over my head:rolleyes: My poor broken legged hubby had to drive himself to his Dr. appt. today with his left foot
 
#15
Update: I will have been off St. John's Wort for 2 weeks tomorrow. My skin healed fine and I have had no symptoms for the past week as I have not left the house during the day. I also wore my sunscreen in the house all week SO IT IS NOT MY SUNSCREEN. On Thursday I needed groceries for dinner and could not wait for darkness to go. My husband drove and I held a magazine reinforced by my purse over my face as a shield from any sunlight. I was also wearing sunscreen and a hat. Before we got to the store, I already felt the burn beginning on the left side of my face. Discouraged, I thought to myself at least it's only one side and I did everything I could to protect myself. I woke up the next morning and the whole right side of my face was painful and burning and still is two days later. I can't handle this anymore. I cannot go out like a normal person, I live in fear of light from any sources...I have gotten no definitive answers from anyone as to why this is happening and when this will subside. Dare I even try to go out next week or next month? I have talked to a Dr. and I cannot get in to see them until February 7th. I'm sure I will get massively burned just trying to get into see the Dr. then. At the risk of sounding bitter I'm asking all of you who take SJW if it is worth damaging your skin...even if you don't get the burning reaction that I do, if it is on your system, it is in your skin and is causing damage when you are exposed to light. In the short term there may be no apparent affects but what about long-term? If anyone doubts that SJW causes a phototoxic reaction look at this article

http://www.ansci.cornell.edu/courses/as625/2005term/Bassett/HypericinText.html

It clearly mentions that the reaction occurs in VISIBLE LIGHT and is NOT a reaction to UV light. It also says that hypericin binds to proteins in tissues and is NOT READILY ELIMINATED. I don't know where to turn next. There just aren't any answers for me except to become a shut-in and put foil on all of my windows
 

shy1

Senior Member
#16
No question you're having a bad go of it. But to quote from the article you cited:

"Despite its numerous adverse effects on livestock, St. John's Wort is far from all bad. It is commonly marketed in health food stores as an anti-depressant (though experiments seem to give mixed results as to its effectiveness). At the low doses taken by humans for this purpose, combined with approximately 80% of the photosensitizers being destroyed by heating and drying, it is unlikely that people will encounter hypericism using it as a remedy."

Your body has certainly had a reaction to something, and based on your observations it seems reasonable that it is probably to the SJW. The photosensitivity issue (which I have had some experience with) is well known, and one which I keep constant vigilance over. Hence my recent switch to SJW from the supercritical extraction method. However, most people have used SJW without incident for centuries. The vast majority are fortunate and are able to use SJW with no adverse effects, and especially without a severe reaction.

Although others have posted about rashes, yours is the first such toxic skin reaction that I recall being posted. I trust your judgement and your observation, but I can't help but wonder if perhaps there was some other substance in your organic SJW that may either be the cause or may be reacting with the SJW in your body to cause the toxicity? Even though you can't see your medical professional until Feb, perhaps you could at least begin any blood work which may be useful?? Curseisonme, this is serious enough to visit the emergency room or to find another medical professional who can see you sooner.

I, and I'm sure the entire forum community, wish you a quick and full recovery.
 
#17
shy1;5353 said:
No question you're having a bad go of it. But to quote from the article you cited:

"Despite its numerous adverse effects on livestock, St. John's Wort is far from all bad. It is commonly marketed in health food stores as an anti-depressant (though experiments seem to give mixed results as to its effectiveness). At the low doses taken by humans for this purpose, combined with approximately 80% of the photosensitizers being destroyed by heating and drying, it is unlikely that people will encounter hypericism using it as a remedy."

Your body has certainly had a reaction to something, and based on your observations it seems reasonable that it is probably to the SJW. The photosensitivity issue (which I have had some experience with) is well known, and one which I keep constant vigilance over. Hence my recent switch to SJW from the supercritical extraction method. However, most people have used SJW without incident for centuries. The vast majority are fortunate and are able to use SJW with no adverse effects, and especially without a severe reaction.

Although others have posted about rashes, yours is the first such toxic skin reaction that I recall being posted. I trust your judgement and your observation, but I can't help but wonder if perhaps there was some other substance in your organic SJW that may either be the cause or may be reacting with the SJW in your body to cause the toxicity? Even though you can't see your medical professional until Feb, perhaps you could at least begin any blood work which may be useful?? Curseisonme, this is serious enough to visit the emergency room or to find another medical professional who can see you sooner.

I, and I'm sure the entire forum community, wish you a quick and full recovery.
Thanks for the insight and the well wishes, Shy1. I too have considered the possibility that the SJW that I blame for this reaction may have been contaminated. I have been trying to get a response from the company with no luck so far. What I believe happened is that their SJW, in not being a standardized extract, packed way too much active ingredient...to the point of giving me an overdose on a normal dosage. However what is most alarming to me is that it's not out of my skin after two weeks...I could understand getting this reaction if I were taking a walk in the sun or something but I am "burning" even while physically shielding my skin from the light in the car...two weeks later.

I am frustrated that I cannot get a Dr. appt. sooner...however I am covered by the military health care system and we take what we can get. If I choose to see another doctor I have to pay out of pocket and we don't even have enough money to pay our mortgage or even buy sufficient groceries to feed our family this month so that is out of the question. My husband broke his ankle and cannot work his second job, and now I can't work because of this sun issue. I suppose going to the ER at night is not a bad idea, although in my experience the inconvenience of waiting 12 or more hrs. to be seen is almost as frustrating as dealing with this burn. I guess my purpose in posting on this board was to see if anyone else has even had somewhat of a reaction like I have had...I guess it would comfort me to know that others have gone through this but apparently I am alone.
 
#18
A common experience

Shy,

How are you ?

Laurie,

My experience is similar to yours, in skin and also in eyes. It is not an overdose. If it was, the antidepressant effect also would be stronger. I cannot decide if it is photosensitivity or photoallergy. I am sure it is not igE mediated allergy since anti-histamines have no effect on it. It looks as if the small grenades stay in you until they explode one by one.

Vulpix
 
#19
Vulpix Sapiens;5381 said:
Shy,

How are you ?

Laurie,

My experience is similar to yours, in skin and also in eyes. It is not an overdose. If it was, the antidepressant effect also would be stronger. I cannot decide if it is photosensitivity or photoallergy. I am sure it is not igE mediated allergy since anti-histamines have no effect on it. It looks as if the small grenades stay in you until they explode one by one.

Vulpix
Vulpix,

I agree the grenades do hang out and explode one by one! In two days I will have been off SJW for 3 weeks and this week I was really good...no daytime driving...actually I didn't even leave the house. However I briefly peeked out the blinds on my son's window yesterday (stupid me, the sun is out there) and not more than two minutes after doing this I realized that I had gotten burned. The areas on my face exposed to the sun for maybe 5 seconds or less began to burn and stayed that way until I woke up this morning and thankfully the burning was gone. SO, in this respect, the length of the reaction has reduced somewhat...although how much of a reaction is reasonable anyway after 5 seconds of sun exposure? My skin all over is still red, bumpy, and angry from all of these burns over the past few weeks...what is the answer medically for us, really? We can't confine ourselves to a dark room for the rest of our lives in fear of the sun. I did receive my new face visor in the mail today from facevisor.com, however I'm still afraid to go in the sun or near reflected sun areas in my house. We don't have blinds on most of our downstairs windows because we chose not to get them last year and now we can't afford them so I avoid going down there during the day. I have not tried antihistamines for this reaction as I don't take these types of things. My intuition tells me this is not a photoallergic reaction, it is a phototoxic reaction. Our bodies are not attacking the SJW in the skin/eyes, the SJW is just having fun on it's own as it's activated by the sun. As to why we continue to have this happen after we go off of the SJW, I don't know. I Just hope that this doesn't continue to go on for another week, month, or God forbid a year or more.
 
#20
Laurie,

In my opinion there could be some photoallergy involved. I was badly hit only when I used SJW for the second time, and the problem gradually extended to parts of my skin which were originally safe. In other terms, my body warned me ?you already took that crap two times but never take it a third time? and propagated the information to all relevant areas.
 
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