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Question/Reply: I went back for another galvanized electricity tx but somehow they did not log my appt. and did not have a technician available to do the tx. They gave me a free laser light or "epilight " tx the next day. The laser light did help somewhat but the galvanized electricity worked best. I talked to the manager of the business and she was excited that I had discovered this added benefit as she says that it is used in Europe extensively to heal skin sores such as bed sores. She is moving her business in with a dermatologist and will only be using one of her machines. She volunteered to lend Duke one of her machines for free if they would like to experiment with it. I emailed my dermatologist there with this info. on Friday. I will be surprised if he is interested as he probably has many experimental things to choose from. If he is not interested I will go to the dermatologist she is working for. If any of your people that you communicate with are going to a dermatologist that has some of the newer equipment for hair removal they might want to ask if galvanized electricity is available. The way it works is that they first ground you with a pad like they do in the operating room. Then they put a gel on the area to be worked on and apply the currant to that area. You usually feel a tingling sensation in that area. It is desgned to kill the hair follicle. One man wrote to you that he had a burning sensation sometimes when the PLEVA was breaking out. I have also experienced that. It feels like a burning needle. He also said that a black hair emerges at the site. I have not experienced that but I am fair skinned. I did notice that a few body hairs near a sore grew 3x longer than normal. I thought this might have to do with using betamethasone cream but maybe this is a problem that is originating in the hair follicles. Does this rash look like there are small hemorrages in the hair follicle to you? You had mentioned that you may have found a dermatologist that might work with you researching this PLEVA problem. What does he know about galvanized electricity? Enough for now.
Answer: First, I think the man with the dark objects coming from his skin is a different disease. He has not been diagnosed with PLEVA as far as I know. Next, it would not be inusual for hair growth to be different near where you apply the betamethasone product. It is a steroid type cream and steroids are known to change hair growth. I have also felt a change at the site of a new lesion and it has been almost painful like a shingle type lesion. Burning itching and discomfort seem to be common. As far as a dermatologist, I still have not found one willing to take us on. The research would be quite time consuming. It consumes a good part of my time just doing the site and collating some of the research from the questionnaire. I will keep looking and pushing though. I will let you know if there is progress.
Question: I am starting Methotrexate therapy. What can I expect?
Answer: I know some of the responders to the PLEVA website have used or are considering using methotrexate. None of the responders have given information about how they have responded to it. Methotrexate is a drug developed mainly for cancer treatments but is now sometimes being used in arthritis and skin diseases like psoriasis and PLEVA that are disabling or very severe. I have also heard of it used for abortion which is one of the side effects. Unlike treatment for cancer, the drug is usually taken only once a week rather than once a day. This reduces the side effects from the drug. Be sure to follow directions exactly if you take this drug and report any side effects to your provider. There is a site on childhood leukemia that lists the side effects. http://www4.nas.edu/beyond/beyonddiscovery.nsf/DocumentFrameset?OpenForm&CuringChildhood
Do realize that because it is a chemotherapy type drug, there are alot of side effects but in the lower doses these should be lessened. Maybe some of our other respondents who have used this drug for PLEVA can give us more information about how it worked and what happened during treatment. As a patient, I would have to be having a very severe case to make the decision to use it. When I was having what I would have considered a severe level, my dermatologists did not mention or offer this as a treatment. Be an informed consumer and ask the provider offering this treatment all the questions you need to feel comfortable about making the decision about using or not using this drug. I have found nothing in the information that states this is a cure any more than any of the other treatments for this disease. If you do use the medication, please let us know of your results.
Response on BH1: BHI is the trademark of Heel/BHI, Inc. a company located in Albuquerque, NM that manufactures homeopathic medicines. The one I tried is labeled ALLERGY and is for relief of various symptoms including skin rashes. It is a combination of a variety of homeopathic drugs including sulphur. This product is sold online at Homeopathy for Health (elixirs.com) and any good health products store.
Response on galvinized current treatment: I have not returned to have the galvanized currant treatment because I was focused on trying to get a definite diagnosis. I was sent to a specialist at Duke who finally told me he thought it was PLEVA. I should make an appt.. I'll let you know if I do go back.
Question: I have had PLEVA now for 7 months. At first my face was spared, but now I have a few. Otherwise it is on 90% of my body. I am a nurse, and I got this condition while working at an over crowded, unkept facility. One thing I remember is that several people at work were getting walking pneumonia when I was getting sick. I wonder if Mycoplasma could have been going around and if it caused my PLEVA. I did get the flu before I broke out. One man I talked to said that is how he got PLEVA too. Also, regarding organisms, I read that 90% of the population will test positive for herpes type 7. They say people usually pick it up around the age of 3, and it does not usually cause disease, unless you are immunosuppressed. Doxycycline is suppose to be the drug for choice for mycoplasma. I am on minocin, and I am unusually liteheaded. My doctor will not test me for mycoplasma though. Also, they refuse to do PUVA on me because they say it increases the risk of cancer. Do you have any suggestions? By the way, Noni juice is helping more than anything at this point. - Anyone feel free to email me... jonikay123@aol.com
Answer: I have included the email address but not the name. If others of you wish to have your email addresses included in a list of available people to correspond with, please let me know. Also remember there is a chat room and no one has joined me there yet. Do I need to change the time? Another respondent has stated that 80% + people are positive for herpes 7. This has to be extrapolated (assumed by the number actually tested) from the population they have tested because they have not tested 80% of the population. It may be so and it is a virus so viral symptoms around the time it is aquired would be usual. I am still trying to get a dermatologist involved in our research. I think I may be able to involve Boston University in this and will let you know. Mycoplasma is normally a self limiting disease and I have not seen anything linking these two. Mycoplasma can involve a chicken pox like rash but it disappears quickly and is not a usual symptom. There is no specific test for mycoplasma and the minocin you are on is a tetracycline family drug so should cure it if this is the problem. PUVA is like being in the sun and I do notice some improvement in the summer when I garden alot. Too much sun can cause skin cancer obviously, but some dermatologists will still order it in very bad cases. They are also being more careful about all medical treatments that may cause problems along the way so it is not usual that they may not use it as much as they used to. Try some minimal sun exposure to see if you think it helps but use good sense about it. Plenty of water to keep your system flushed, good diet, plenty of rest and keeping your immune system up. Look at some of the alternatives and see if they might fit your needs like echinacea, or the oil I have had some luck with (see earlier entries). Get a good herbal and check it out. None of us have the answers yet so your search may help all of us.
Question: sorry that i have as yet been unable to get on the chat line. I really would like to talk to someone else with this condition. I have traveling and must be off again before the next session. I was hypnotised and am taking doxepin. I dont know if the hypnosis helped or the doxepin or just the warm weather but finally after 6months i seem to be getting this under control. I think i will be hypnotized again when i return just to reinforce it. As my insurance doesn't pay for this it will have to prove very effective for me to continue. I copied your information and gave it to my internist. He seems more willing to try other things. I told him about the possible relation to Herpes 7 and his reponse was to use Famvir. Has any one had any success with that? well enough for now. Maybe in two weeks i'll get on the chat line. Thanks for your effort here.
Answer: If it is herpes seven causing it, Famvir may work very well. Though we are looking at that possibility, no information has come out about the cyclovir family and how it works for PLEVA. Anyone have definate information about others or their own experience?
Question: I saw another site that talked about possible similar afflictions and symptoms generated from plants. I was dx'd with mh, but it started in Nevada, where I was playing golf and walking in sage brush.
Answer: I have not heard of a plant relationship but the cause is not definately known yet. I don't think PLEVA is caused by plant exposure just because plant afflictions usually dissappear with the usual dermatology treatments and re-exposure is required for return of the problem. This disease can be quite resistent to treatment and returns in many people seasonally. Hope this helps and feel free to ask other questions.
Question: Who ever you are keep up the great work.Thank You,for all the information. Please don't ever stop. Alot of people sure would be willing to help the cause. Just give the ring . E-mail. Any-thing you,ve been wonderful. I can't stand this disease,but you gave me help and understanding. Agape,
Answer: Thanks for the praise. It is always welcome. If you are interested in corresponding with others, let me know and I will include your email adress in a list on the site. Also, the chat room may get going and is another place to join in. There you will have a number and that can be contained in a group support list.
Question: Im not sure what I have, I have been to five doctors who 'dont know'. What is BH1 and where can I buy it?? If it contains sulphur, Im very interested. Or any herb that treats parasites or insects. That is the only thing I havent tried... I have sharp stinging pains and a small microscopic black hairlike organism emerges out of my skin head to toe... for the last four months my life has been a torment. Please help.. thanks..
Answer: I have not heard of anythng like this. Have they looked at these "organisms" under a microscope? An over the counter medicine is nix that affects true parasites. There are also some herbal preps that are said to affect them like the oils of tea tree, lavender, lemon, and rosemary. Check out a good herbal or the Glory of the Garden site for herbals. Your library may help too. Remember, the "organism" has to be identified first. PS. Sorry I haven't heard of BH1. Where did you find it mentioned?
Question: It will be 3 years this October that I was diagnosed with Pleva. Two biopsies confirmed the diagnosis. My lesions are highly symmetrical and mostly on the outside extremities. Topical steroids help, especially Psorcon, and Prednisone clears up the lesions temporarily, but living with Prednisone is very difficult for me. I finally received the results of my herpes 7 test and it came back positive. Interesting to note was an explanation by Specialty Labs stating that 85 percent of the population is infected with hhv-6 and hhv-7. If this is the case then can a correlation really be made between Pleva and herpes 7. Food for thought I guess. Please keep up your great work here. You help us all feel not so quite alone.
Answer: Thanks for the info about herpes 7. This has to taken from a small sample because 85% of the population has not been tested and, as far as I can determine, they have not figured out what this means or what diseases may be linked to this virus. Certainly we can hope that time will certainly provide more information.
Question: Hi! Wish I had found all you people and all the info. last year at this time. I am a sixty year old (59 when diagnosed) with PLEVA. If anything I need to belong to some type of support group, to share info, stats, etc., I am currently in a remission, and am starting a titration regime of MTX (methotrexate). I am also a female, which I forgot to mention. Please come on line and share with me. bap@tjpbap@aol.com Please help me out, I am not quite sure how to get into the ICQ Chat Room. I would love to share information about PLEVA, since I was diagnosed about a year ago. I would like to share info. and the disease process with other people who are experiencing it. I am a sixty (59 when diagnosed) year old woman, I have had numerous exacerbation's and am now in the process of titration MTX. Hope you can help me out. Thanks so much
Answer: I am putting your note with email address on the site so that if others wish to correspond, they may. To join the chat room, go to the Chat Room sign above and click on it. It will take you to a page that talks about ICQ and how to download the FREE program. Once you have it downloaded you can go back to that Chat Room page and click on join chat room on Tuesday evening when it is open. The site where you download will also give more information about the ICQ program. Hope this helps but feel free to contact me for any further information.
Question: First I'd like to thank you for the PLEVA site and for the research you are doing. In the latter vein I offer the following in the hope it might help: I am a 51 year old female who contracted PLEVA 4 weeks ago. I had no warning symptoms before the rash and have felt fine until 4 days ago when I woke up with a sore throat. I also developed violent sneezing and dry itchy eyes at about the same time. The sore throat is now gone and I feel fine. My lesions are mostly on my torso--front and back--with a few scattered lesions on my arms and lower legs. There are no lesions on my face, scalp, mucous membranes, soles of my hands or feet, buttocks or genitals. I have about 60 lesions in total--none have formed into plaques but some have erupted very close to existing lesions. I have had new lesions almost daily until 4 days ago--none since. The existing lesions are drying up but puff up whenever I bathe--whether hot or cool water it seems to make no difference. I have decided to sponge bath from now on. I've been using calendula (a homeopathic antiinflamatory gel) for 4-5 days and have had some relief from the itching and burning . My lesions are also variable in type and size and some remind me of chicken pox lesions or shingles rash (I had shingles 3-4 years ago) in terms of how they look or the fact that they are somewhat painful. Since they are so similar to those caused by herpes zoster I decided to try a natural antiviral --olive leaf--which I started 5 days ago at a dosage of 2 tablets 4 times per day. At that time I also started taking a natural antihistimine--quercetin complex--I take 2 capsules 3 times per day. It may be coincidence but I have had no new lesions since the day after starting these two (I did, however, get 15 new lesions the day I started these supplements). As far as the events preceding the PLEVA, I had been seeing a chiropractor for a rotor cuff injury and receiving NAET treatments for allergies (seasonal) from an acupuncturist. So my body ( and immune system?) were under stress. This also makes me suspicious that we are dealing with a viral agent--specifically herpes. Lastly, routine blood work in December indicated a somewhat low WBC--another indication of suppressed immune function? Or, possibly allergies? Hope this helps others who are looking for alternative treatments and helps you discover commonalities,if any, between us. Write if you want. Tbistro@sedona.net I first got this 4 weeks ago. I suspect it is viral--not autoimmune--because of the similarity of the rash caused by chicken pox (caused by a herpes virus)and the fact that it can recur (herpes viruses can lie dormant in the body for years). I decided to try a powerful natural antiviral (olive leaf) and also a natural antihistimine for the itch (quercetin complex). I've been applying calendula gel (a homeopathic get) topically. I started these 6 days ago and have had no more lesions although I had a fresh crop within hours of starting the antiviral. Most of the existing lesions are drying out but a couple are inflamed. I saw a posting from a woman who tried sulphur 30x (a homeopathic remedy for skin rash which is worse with heat or water) and said her rash cleared up with days. I bought BH1 for skin rashes and hives (a combination remedy containing sulphur) which I started taking last night. I will post the effects.
Answer: I have had a request from the PLEVA page to know what BH1 is and where to buy it . Can you tell me more about it?
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