Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 The sites that I looked at about porphyria are: http://www.uq.edu.au/porphyria/ and http://users.image.net/~wipeout/journey.htm which is Mara's Porphyria Journey, a story not unlike what many CFS sufferers have gone through. What led to me looking at porphyria was the information on Dr. Stratton's protocol, which discusses porphyria being associated with Chlamydial infections. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 I looked at the material & had a difficlut time understand it. Could you state in a couple of sentences what this is? > Re: porphyria > > From: KB46@... > > The sites that I looked at about porphyria are: > http://www.uq.edu.au/por > phyria/ > > and > http://users.image.net/~wipeout/journey.htm > which is Mara's Porphyria Journey, a story not unlike what many CFS > sufferers > have gone through. > > What led to me looking at porphyria was the information on Dr. Stratton's > protocol, which discusses porphyria being associated with Chlamydial > infections. > > Barb > > ------------------------------------------------------------------------ > Where do some of the Internet's largest email lists reside? > > At ONElist - the most scalable and reliable service on the Internet. > ------------------------------------------------------------------------ > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Dear Winne when I go out in the sun, or get hot, I get a headache and nausea. Is this what your husband gets? maybe I've got porphyria too? Never heard of it before but I looked it up in the English dictionary and it says its hereditary and the name is latin for purple because it makes you go that colour. love sylv Re: antidepressants and hep > > Alley > > Your facts are right about the prophyria - my husband went from a > construction worker out in the sun all day to a night person on the combo > because of the HepC and the porphyria from the Hep C. He is not happy about > the changes of course. They say once the porphyria is under control you can > get back out in the sun but the people with PCT that I have talked to say > differently and have had it for years. We shall see one day I hope. > > Winne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Dear Winne when I go out in the sun, or get hot, I get a headache and nausea. Is this what your husband gets? maybe I've got porphyria too? Never heard of it before but I looked it up in the English dictionary and it says its hereditary and the name is latin for purple because it makes you go that colour. love sylv Re: antidepressants and hep > > Alley > > Your facts are right about the prophyria - my husband went from a > construction worker out in the sun all day to a night person on the combo > because of the HepC and the porphyria from the Hep C. He is not happy about > the changes of course. They say once the porphyria is under control you can > get back out in the sun but the people with PCT that I have talked to say > differently and have had it for years. We shall see one day I hope. > > Winne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Sylv There are many types of porphyria but the one that is caused by hepatitis C is called PCT or Porphyria Cutanea Tarda. Sometimes it is hereditary but it does not turn you purple. This kind of Porphyria causes the blisters on the hands and is photosensitive. There is a great Web page to go to find out all about PCT and the other kinds. Its called the American Porphyria Foundation at: www.enterprise.net/apf/ They call my husbands PCT a secondary infection to the Hepatits C and the Rebetron Combo has helped a great deal with both the PCT and the HCV. I don't think you have to worry about Porphyria but they do a blood and a urine test for it. Its the urine test that they put under a light and it turns purple. I don't think to many people with Hep C can stand the heat especially if you are on the treatment also. I know my husband can't and of course he has to stay out of the sun or he gets the blisters back on his hands and arms. Hope everyone is doing well your all in our prayers. Stay positive!! Winne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Sylv There are many types of porphyria but the one that is caused by hepatitis C is called PCT or Porphyria Cutanea Tarda. Sometimes it is hereditary but it does not turn you purple. This kind of Porphyria causes the blisters on the hands and is photosensitive. There is a great Web page to go to find out all about PCT and the other kinds. Its called the American Porphyria Foundation at: www.enterprise.net/apf/ They call my husbands PCT a secondary infection to the Hepatits C and the Rebetron Combo has helped a great deal with both the PCT and the HCV. I don't think you have to worry about Porphyria but they do a blood and a urine test for it. Its the urine test that they put under a light and it turns purple. I don't think to many people with Hep C can stand the heat especially if you are on the treatment also. I know my husband can't and of course he has to stay out of the sun or he gets the blisters back on his hands and arms. Hope everyone is doing well your all in our prayers. Stay positive!! Winne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 sylv... porph.. whatever.. is more than just sick in the sun. It's actual skin condition too. Yep, I've gone to sun lover, tan blonde love the summer... to fair weather hepper. I thot that was bad and now on treatment, man oh man. Stick yer head in a heated 500 degree oven! owy! But hey, like Marty says, it's only temp! alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 There is one site that has articles linking chemical injury and porphyria that I have found, and it sounds like a better site than the one you found. The URL is: http://members.tripod.com/~PorphBook/13.html I wouldn't listen to any site that says MCS is not a real condition, even if it is the " official " porphyria site. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 > I went to the American Porphyria Foundation > http://www.enterprise.net looking for information on MCS and it's > relation to Porphyria. When I got there, I found this disclaimer > that said that MCS was not a medically recognised condition, and > further the association between this supposed condition(MCS) and > porphyria was faulty due to some inaccurate testing from one lab. > And, that there was NO reason to link these two conditions. > > Anyone care to comment on this? Is the link between MCS and > Porphyria a wild goose chase? > > > Zippy I think it's probably a wild goose chase, although some symptoms of porphria may produce some unusual sensitivies. Easy to test one for porphyria, if M.D. uses legitimate lab. B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 I get similar when the tinnitus is bad, and have small red raised blood blister like marks on different parts of my body. I purchased a Tesla watch, and the first week of wearing it on my left wrist had to change it to my right as a large 1 " long blister formed underneath the strap at a time of high frequency sound. I put it onto my other wrist where it was fine. This actually scarred my wrist for a while. There are no antannae around me and I never use a mobile phone. But my next door neighbour does have a large weird looking metal machine in his house which is basically unoccupied. Maureen porphyria > I have been electrically sensitive since 1998 when the building I > live in installed 9 more antennae. They already had installed 6 > prior to 1998 which I did not notice any symptoms. It started off > with the tinnitus, headaches, digestive disorder and then I started > to get these huge blood blisters. I've been to a skin specialist > and he thought it might be porphyria but of course when I was tested > the results were negative. I still get the blood blisters and > notice that whenever the buzzing in my ears get worse then I get the > blisters. So far I only get them on my hands. Does anyone know > anything about this? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 I get red hands from bad computer monitors/screens or prolonged exposure to any screen. Perhaps the antennae are aggravating a reaction due to the close proximity of your hands to a screen? If this was the case, I guess it would be easy to do an experiment (e.g. move hands/keyboard away from screen or place a shield between hands and screen). porphyria I have been electrically sensitive since 1998 when the building I live in installed 9 more antennae. They already had installed 6 prior to 1998 which I did not notice any symptoms. It started off with the tinnitus, headaches, digestive disorder and then I started to get these huge blood blisters. I've been to a skin specialist and he thought it might be porphyria but of course when I was tested the results were negative. I still get the blood blisters and notice that whenever the buzzing in my ears get worse then I get the blisters. So far I only get them on my hands. Does anyone know anything about this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 > I get red hands from bad computer monitors/screens Please check out this photo just posted today showing some examples of hands and emf exposure reactions. Click on the " Photos " link and find Effects on Skin Folder If your reactions are quite different please share your photo. thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Lachlan - does this hand redness include LCD monitors or just CRT types? Cheers Pete Lachlan Mudge wrote: > I get red hands from bad computer monitors/screens or prolonged > exposure to any > screen. Perhaps the antennae are aggravating a reaction due to the close > proximity of your hands to a screen? If this was the case, I guess it > would be > easy to do an experiment (e.g. move hands/keyboard away from screen or > place a > shield between hands and screen). > > porphyria > > I have been electrically sensitive since 1998 when the building I > live in installed 9 more antennae. They already had installed 6 > prior to 1998 which I did not notice any symptoms. It started off > with the tinnitus, headaches, digestive disorder and then I started > to get these huge blood blisters. I've been to a skin specialist > and he thought it might be porphyria but of course when I was tested > the results were negative. I still get the blood blisters and > notice that whenever the buzzing in my ears get worse then I get the > blisters. So far I only get them on my hands. Does anyone know > anything about this? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 The LCD screen on the laptop I sometimes use seems to be fine. I haven't tried LCD screens on desktops yet porphyria > > I have been electrically sensitive since 1998 when the building I > live in installed 9 more antennae. They already had installed 6 > prior to 1998 which I did not notice any symptoms. It started off > with the tinnitus, headaches, digestive disorder and then I started > to get these huge blood blisters. I've been to a skin specialist > and he thought it might be porphyria but of course when I was tested > the results were negative. I still get the blood blisters and > notice that whenever the buzzing in my ears get worse then I get the > blisters. So far I only get them on my hands. Does anyone know > anything about this? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Most inclusive article on this - a must read for all. http://www.cpnhelp.org/secondaryporphyria > > can anyone explain to me more about this and how it might tie into > 'cfs " and also be distinguished from p450 issues? I would like to have > them ruled out but seems like that would be hard to pull off......... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 very glad to have this resource, lots of food for thought but hey what do you think about this: http://www.porphyriafoundation.com/about_por/drugs/drugs02.html they say benzos, or at least clonazepam contraindicated with this problem but the cpn site you list recs them for anxiety? > > Most inclusive article on this - a must read for all. > > http://www.cpnhelp.org/secondaryporphyria > > > > can anyone explain to me more about this and how it might tie into > > 'cfs " and also be distinguished from p450 issues? I would like to > have > > them ruled out but seems like that would be hard to pull off......... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Good question. My only thoughts would be these 1. cpn patients don't really have hereditary porphyria. 2. I wouldn't give a dog benzos. But that is just me. a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 LOL aw what if the dog had tried everything else and still felt anxious > > Good question. My only thoughts would be these > 1. cpn patients don't really have hereditary porphyria. > 2. I wouldn't give a dog benzos. But that is just me. > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Veterinarians would probably assume the dog had Lyme disease and put the poor creature on antibiotics. I hear that vets in the UK are sending dog blood to the US to be tested for borrelia. I'm about to embark on Dr. Stratton's protocol - something I tried in 2000 when I was 80% recovered. The Flagyl or whatever I took back then make me sicker. I didn't figure that probably meant I needed it. So now eight years later I will start all over again. You can read about this treatment and the porphyria issue at http://www.cpnhelp.org Woof! a > > LOL > aw what if the dog had tried everything else and still felt anxious > > > > > > Good question. My only thoughts would be these > > 1. cpn patients don't really have hereditary porphyria. > > 2. I wouldn't give a dog benzos. But that is just me. > > > > a Carnes > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Rashes.pdf Quote Link to comment Share on other sites More sharing options...
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