Rosemary Appleton's report on experiencing an attack of Shingles (the chicken pox herpes zoster virus)and then Bullous Pemphigoid.

Have you ever been grabbed by a burning demon in your face? I have. It's called "Shingles". Shingles is a disease that strikes more then a half-million Americans every year. I had the Herpes zoster opthalmicus variety.

Since it took three days of blinding pain for someone in the medical profession to recognize what I had, I thought I better use my website skills to publish my information. There is a theory that the sooner you start taking antivirus medication like Acyclovir or Famvir the less chance you have of having lasting pain from nerve damage, post herpetic neuralgia (PHN), which I have had now for almost four 1/2 years. At 2 1/2 years I had a secondary condition called Bullous Pemphigoid.

September 10th, 2002: I went to my dentist for throbbing pain in my upper jaw and nose with blisters next to my nose. He said it was not my teeth - maybe a sinus infection. He gave me a prescription for 250 mg Ampicillin. I went to my primary physician, he said it looked a little like a virus but gave me a prescription for CIPRO 500 mg and a decongestant Deconamine. The Ampicillin, Cipro and decongestant did not do any good. By this time I have blisters that looked like someone burned me with a cigarette up the side of my nose and across the top of my right cheek.

September 11th: Pain has increased by an order of magnitude. My primary physician told me to go to the emergency room. A friend takes me to Plantation General Hospital because I can't drive myself anymore. One of the physicians, Dr. Carol Lieverman takes one look at the pattern of the blisters and recognizes that it is shingles. Thank you Dr. Carol. Plantation General gives me prescriptions for Famvir 500 mg to treat the virus and Vicodin 500 mg for pain. Also, I am instructed to go to an Ophthalmologist because the shingles are around my eye. So I went to my ophthalmologist, Dr. Tobe Rubin, and get steroid eye drops and Bacitracin ophthalmic salve. She said the virus is not in my eye at this time. For a few nights I had some white stuff caked in my mouth. I brushed it out with peroxide and water.

September 15th: All night I have needle stabbing pains in my right eye. I figure the virus has gone into the eye. Monday is a Jewish holiday and both my doctors are not in, so the nurse at my primary care physician told me to go to the emergency room again. At Plantation General Hospital they examine my eye and the virus has indeed gone into the eye. Plantation General changes my pain medication to Percoset since the Vicodin isn't working. They find the on-call physician for the group of doctors Dr. Rubin is partners with and get me an appointment. I see Dr. Angela who changes my prescription to Acyclovir for the virus instead of Famvir. Fortunately the virus is only on the cornea of my eye and has not rooted into the eye or attacked the optic nerve. If it had rooted in I would have gone blind in that eye. The next day the scabs appear to be healing faster but I am still getting new blisters under my scalp around my right ear and up the back of my head to the top of my head. My hair may never recover. I realize now that the loss of body hair may be a pre-symptom that shingles are coming.

The rest of September I spent in intense pain while the shingles tore up my face and scalp. I could not sleep longer then about an hour and a half before the pain killer wore off and I awoke to screaming pain. I would sleep on my hands to keep from touching my face. During this time my dreams were my only break. I saw my Ma and Pa, and my grandmother. I spent several pleasant hours with them. I have missed them considerably since they went to heaven. My Ma gave me a birthday party where I met my new niece that was to be born a couple weeks later. Some nights I imagined I was sleeping in a nest of Angels. I was able to go to sleep that way. As you can see in the pictures it also swells and pulls the muscles. I did not know if my face would come back to the shape it was, but it did (with a few extra wrinkles on the shingles side).

A lot of the pictures I took did not come out because I was so out of it trying to operate the timer since I live alone. It took a month for the huge scab on my nose to drop off. I felt inside my nose with a Q-tip. The scab went through to the inside of my nose. If I had pulled it off prematurely I think I would have had a hole in my nose and needed plastic surgery.

Between the pain and the pain killers I had several hallucinations. One gave me the name for this web site when a demon grabbed my head. I prayed and he let go. I wish the pain from the wound would go away as quickly...

Somehow the virus affects the bones. It is not just blisters and scabs. It started in my upper jaw bone and the bone next to the right side of my nose. I heard about one lady being put in traction for her neck before they realized that she was actually suffering from shingles.

I was all happy when the scabs started to fall off. I had scabs falling from my hair like little feathers. Little did I know the worst part was yet to come. The doctors did not warn me about the pain seizures or the post herpetic neuralgia (PHN) nerve pain.

I could not watch TV, read books, or surf the net because of the pain from my eye. I could hardly keep my right eye open. I would listen to the TV or some of my charka energy tapes. Sometimes all I could do was sit and let the pain wash over me. It would not even let me think. When the pain killer was working I would relive happy times in my life. When I woke up when the pain killers wore off, the pain was excruciating. I wanted to cry out and curse. Luckily I realized it was a test and I only would have cursed myself.

During most of the entire ordeal I have been taking numerous showers and baths. I also have a hand-held shower head in one bathroom and a pull-out faucet in my kitchen. When the fire got too bad on my face I would hold my face in the water. When the infection was bad I would powder my face with a cotton ball and boric acid and I continued to take the antibiotic since I knew that I scarred easily and this must have helped because after nine months you could hardly see where I had the pock marks, but I still had the nerve pain even now.

I was too incapacitated to cook most of the time (open a can) so I lived on ice cream (which also froze my face and brain) and eggnog with numerous cups of green tea.

I believe I got the Allodynia pain attacks, which only one out of four shingles victims gets, the virus on the cornea of my eye, and the PHN which also only affects one out of four shingles victims because I had it on my face and scalp. Thank God I did not get the encephalitis! I guess I needed pretty much the full tour to be able to publish this account.

The first Allodynia pain attack I thought was going to kill me. It lasted for about a minute and was like lightning down through the top of my head frying my brain and then trickling down my neck and tongue and then petering out. Like standing in a lightning bolt fully conscious of the pain. I asked God if this was it and I heard an answer come back 'No'. I had only rubbed my right eyebrow and the lightning pain hit. I dropped to the couch and writhed through the seizure but I was totally conscious. I would describe it as an uncontrolled orgasmic blast of pain from the top of my head down my left cheek, through my left eye and into my tongue, which then trickled out down my neck.

The Allodynia pain seizures made me scream out and usually drop to the floor or the nearest couch. I live alone but I think my neighbors heard me! After the first one I went to the internet to find out what had just happened. The best thing about the pain attacks is that, after a pain attack you feel the best you can. It took at least an hour for another one to build up because of the intensity. After an attack, was the only time I could brush my hair without triggering another attack. The seizures grab all the pain in your head and then throw it off in the spasms. I now know why ancient peoples believed that if you had seizures you were touched by the Gods. I think they were right... Recently I have found out what nerve was being affected thanks to a report on our local Channel 7, WSVN in Miami http://www.wsvn.com/features/articles/medicalreports/C656/. The patient also describes the pain like a lightning bolt. Here is a separate link about the nerve in the face http://www.meddean.luc.edu/lumen/MedEd/GrossAnatomy/h_n/cn/cn1/cn5.htm .

Lucky for me I had the internet to find PainBreak. I ordered the free sample. The PainBreak.com cream broke the circuit of the Allodynia pain in my head somehow. Maybe it just gives the nerves something to do besides build up pain. Anyway, it cut the big blasts of periodic pain seizures down. I don't know if it would help as much unless you also had the shingles on your head.

October 13th, 2002: Had the last pain seizure. Now the PHN has increased proportionately. It is as if the leftover pain has to come out some other way. It is squeezing out even through my eye, mouth and tongue. Sometimes it seems like my eye has milk on it. I wear a football mouth guard so I do not chew up my gums and grind my teeth at night.

October 18th: Had the opportunity to compare a wasp sting on my arm with the PHN pain on my face and the face pain was equal to a wasp sting on every millimeter in the affected area which, unlike the wasp sting, did not go away in 15 minutes...

November 1st: It is almost two months since I first came down with this. I have taken a Percoset in order to be able to get anything done. All around my eye, the right side of my nose, my forehead on the right side, in my mouth on the top right, and the right side of my tongue, are all burning with PHN. I have realized that I am not going to make it back to work yet. I am trying not to panic... but, compared to stuff I have read I am doing really good! I have PainBreak and Lidocaine cream to put out some of the fire and I have also found that swimmers ear solution (alcohol and boric acid) also calms down the pain in my scalp. I can only put Aspercream right over my eyelid and around my eye. It does help some. Every little bit helps. Nothing makes all the pain go away.

Nov. 5th: Have been to Dr. Rubin who said my eye is healing and a new doctor, Dr. Krampat, a neurologist specializing in nerve pain. He has proscribed Neurontin (Gabapentin). I am to see him again in two weeks. I have taken the Neurontin today and it does seem that the pain is less. I have hope.

November 13th: Met my Great, Great, American Indian Grandfather in a dream who gave me a chant during which I am to imagine red dust waves of pain coming off my face and fading out into the air to symbolize the pain coming out. This is not a totally unknown technique. I am told some cancer patients imagine good guys beating their cancer bad guys and improving their condition.

November 15th: Had another insight from Great, Great, Great, Grandfather. I am to find mud packs for my face.

November 19th: I have found Queen Helene's Mud Pack at Walgreens. I definitely am feeling and sleeping better and the mud packs have removed some of the scarring! It seems to pull off the red and brown discoloration. My neurologist, Dr. Krampat, prescribed Sulindac for the additional pain but I broke out in a rash on my tongue.

December 2nd: Have been to see Dr. Rubin and am able to go back to work tomorrow! I just have to keep the eye wet with eye drops. At work I will use the Lidocaine cream and the Aspercream on my face to kill pain along with the Neurontin and a new pain killer Dr. Krumpat gave me which is Diclofenac (later on I found out Diclofenac gave me bleeding ulcers which have the possibility of changing into Lymphoma so you probably need Percoset) . My job involves taking Tech Support calls so no customers will see my face, which looked bad (I couldn't wear makeup) but it was not too scary! Didn't scare children anymore!

December 18th: I am making it! Sometimes I have had to put an ice cube in a paper towel to my face between phones calls! I am taking Neurontin and Diclofenac twice a day. The pain still comes in a wave once in a while. Aspercream helps too. My mouth is less numb. For the first time in four months on Thursday I could feel soap in my right eye. I have been able to put my finger right on it and not feel the touch. But I see almost the same. There are a lot of floaters in the eye which my ophthalmologist says will calm down and eventually be normal. The skin and the muscles underneath are definitely in paralysis where the shingles were.

January 9th, 2003: I have made it to the new year! It is four months today! The numbness is starting to come out of my eye, nose, and tongue. As it does I can feel the fire. My mouth is pretty sore and it is very uncomfortable to wear my partial so I don't wear it all the time. I am still taking the Neurontin and the Diclofenac. I also put Aspercr�me on that side of my face. I alternate between the Aspercreme, Lidocaine ointment and Painbreak. The Aspercreme is the only one I can put right on my eyelid and over my whole eye area. I also bought cheap eye drops at the grocery store to keep my eyes lubricated. As I keep looking at the computer all day the sore eye gets dry very easy. I am very sensitive to sunlight. I bought some huge sun glasses to fit over my regular glasses. I will never be able to wear my contact lenses again. My strength is coming back and I am sleeping better now. Yesterday I actually slept eight hours at one time!

Here I am on December 30th with my friend Patricia Protich! You can see that the scarring is clearing up wonderfully! I thought at one time I would need plastic surgery but now all I really want is a good tan! Turns out that I can never let my face get a sunburn since that might cause the shingles to break out again. Sunburn is classified as 'skin injury'. The sun on my face really makes my face burn.

January 13th: My face is burning out the pain. It burns for a couple hours - then feels like nothing is there. The feeling is coming back more to my eye and nose but as it does more burning starts. I have found that Solarcaine Sunburn gel has .5% Lidocaine in it and can be lathered on profusely without having to use the prescription Lidocaine ointment which is 5% Lidocaine. I hope I will be in the 75% of Shingles sufferers that has no pain after six months. (No, I wasn't.) The scarring is clearing up just great. The Queen Helene Mudd Masques are taking most of the redness and brown scar tissue off. People look at me and do not know that my face is still burning. They can't tell at all.

February 7th: It has been exactly five months since this adventure in pain started. I itches really bad in between pain. The itching is so bad I have to rub both eyes to judge how hard I rub the right eye. I want to rub it right out sometimes! It is hard to believe the pain and poison, whatever, can travel through my eye and tongue. I have scars in the back of my tongue. When I wake up I put Solarcaine over my face until I get in the bath or shower. I take three Neurontin and one Diclofenac every day along with my vitamins. After bathing I put Aspercream over my face lavishly. I can't wear mascara yet on my eyes because they burn and itch too much. All and all though, I am doing great. I am making it through work and doing good. The people I work with can't tell I am still in pain...

April 4th: My skin on the right side of my face is peeling like a lizard....I don't want to say a snake... Anyway, it is doing this after it burns harder for a couple days and then it peels off and there is nicer new skin underneath! I am still take three Neurontin and one Diclofenac (I found out Diclofenac gave me bleeding ulcers which have the possibility of changing into Lymphoma so you probably need Percoset instead. Don't take Diclofenac.) and sometimes two on the days it is burning to get through work every day along with my vitamins. It is seven months now. I am so tired of the pain.

April 14th: I have noticed that I do not have to take an additional pain killer in the afternoon most of the time! Maybe it was time for my nerves pain (PHN) to start calming down from the Shingles attack finally.

May 26th: It is just about nine months. One day a couple weeks ago I woke up with my hair burning like fire! I did not even know my scalp was suffering paralysis! Anyway, It has calmed down some. I am still taking the Neurontin. The Lidocaine ointment and the aspirin cream still help a lot. My mouth is so much better. The right-hand side of my lip is still numb and painful. I also have started making my own eye solution. All the store solutions from the $11 ones to the $3 ones all burn. I make my own solution out of plain tap water and about a 3/4 teaspoon of boric acid and I put it in a nasal wash bottle. I make a new glass full every two days when I soak in the tub with the rest of the boric acid. In the sinus bottle I can squirt my eye liberally and it only costs pennies. I still shower an additional one or two times per day. When I go to work I leave my hair wet and pull it back in a bun. It keeps the burning down for at least half the day. I am just starting to feel when my nose is running!

July 23rd: The pain has rolled back. I thought my scalp and mouth were all set until a few more layers of tissue woke up. I am no longer numb over my right ear. The PHN around my right eye and the right side of my nose is still considerable. I still take two Neurontin and one Diclofenac every day with liberal use of the Aspercreme. My lip is still sore. My tongue feels weird on the right-hand side. I think the numbness is mostly out of it and it is a little sore. My lips are dry and cracked so I put vasoline on them. I break out with sores on the side of my mouth which I put decolorized iodine on and they go away. I am hoping that I will be pain free on my one-year shingles anniversary in September. (No. I wasn't.)

September 9th: Here it is, one year. I keep thinking, this is the month I don't have to renew the Diclofenac (I found out Diclofenac gave me bleeding ulcers which have the possibility of changing into Lymphoma so you probably need Percoset instead. Don't take Diclofenac.) and Neurontin. But so far it does not look like it... I still use the Lidocaine creme and Aspercreme too. The far corner of my right eye and right next to the bottom of my nose where I first broke out, still hurt. I am less sensitive to sunshine. It does not burn so much. People have been writing me and making me feel lucky. They went blind in the eye that they had the shingles in. I think when I used to put my face in a big bowl of water and open my eyes with a couple tablespoons of boric acid in the water possibly is what saved my vision in my right eye. I powdered my face with boric acid too. I also think that taking the Ampicillin along with the virus medication prevented the secondary infections in the pock marks that scar most people so horribly. I'm thinking ...six more months maybe...

October 27th: Here it is almost November, one year and two months, and it still feels like the fire of hell touches my face but it doesn't scar it! I am down to one Neurontin and one Diclofenac on most days. More of the nerves in my upper right lip and top right of my mouth are waking up. This may not seem like much but it means that I don't bite my lip all the time!

December 31, 2003: It is hard to believe it has been a year and three months. I still have pain. My nose is waking up more! My skin is showing some wrinkles on the right side where it was so swollen up that I do not have on my left side. Since I am so lucky that the scars are very minimal this is a small price to pay.

I still take two Neurontin and one or two Diclofenac almost every day. I have found that it works better if I take one of each about 4:00 o'clock in the morning and get a lot of sleep. I am working full-time and doing a few side projects too! Every month I can tell that the pain is just a little less then the previous month.

January 8, 2004: The pain is noticeably less today! Yipee! I only took one Neurontin and one Diclofenac about 5:30 am. I am hoping that my sentence of pain is about to be paroled!

February 22: I did not realize how numb my mouth and lips were until they have recently woke up some more. When it is still numb you do not feel the pain. It is a good thing that it does not wake up all at once... My partial now fits again without me using Fixadent!

My face is feeling noticeably better. I still take one or two Neurontin and one Diclofenac. I tried doing without one or the other and it is no good yet. The PHN is too distracting. I have stopped using globs of Aspercream and Lidocaine so I don't look so greasy! My lips are very dry and sore and my skin is peeling around my mouth and next to my nose. I found what feels best is butter but mostly use Vasoline.

March 20: It has been a year and a half...and I still take the Neurontin and Diclofenac daily. Sometimes one of each and sometimes two of each. I heard on the news about a new super strong capsaicin patch that is now available. You put it on for an hour while it intensely burns the area and then for a couple of months the nerves don't hurt so bad. Unfortunately, it can't be used on the face, but anywhere from the neck down is worth a try. Here are a couple of links I found about it:

April 24: My lip and the worst area next to the right side of my nose and around my right eye are waking up. The feeling is coming back to the skin and underlying tissues. Of course it hurts and itches when it wakes up. I am taking this as a sign that it is really starting to GO AWAY! I still take two Neurontin and one Diclofenac every day.

I tried to get new glasses to see better but the eye doctor was not able to get my far vision very good in the virus eye. I will try again in six months.

May 5: I have received an email from Michael R. warning me not to get sunburned on my face because of the danger of setting the shingles off again! Here is a link he sent warning about the dangers of skin injury or sunburn on the shingles area causing the shingles to reoccur: http://www.hmc.psu.edu/healthinfo/s/shingles.htm

June 5: Just this week I have discontinued taking the Diclofenac!!! Yipppppeeee! A pain killer I no longer have to refill every month! For a week I have only been taking a Neurontin every 12 hours along with two aspirin, My face still feels like I have a Phantom of the Opera mask on, but a lot of the needles sticking me inside are gone. When I look at myself in the mirror it amazes me that you can't hardly see anything when I, being inside my face, feel this pain all the time.

July 19: I have gone back to taking two Neurontin a day again along with a Diclofenac. The summer here has been so hot that the sweat wakes up all the nerves in my face and just makes it burn. So, I took a step back. More and more areas on my cheek and upper right lip are waking up. It burns now that the paralysis is loosing its' grip. I guess that is good since the alternative would have been to have a numb cheek and lip for the rest of my life. Also, my sinuses are finally healing out on that side. I have hope that at some point I will be able to breathe normally again. You know how your breath changes from nostril to nostril? Well mine has not done that for almost two years...

I let my dentist take x-rays for the first time in two years. Just the thought of sticking that cardboard in my mouth was enough of a reason not to go; however, I have two abscesses which I have to take care of. The assistant put gauze in the top and bottom of my mouth to cushion the cardboard. Thank God the work does not actually have to be done on the shingles side!

August 23: Still taking two Neurontin and one Diclofenac every day. I called an ad in the paper about Shingles Research and offered to volunteer; however, they require their subjects to stop taking all current medications, so I cannot do that.

The other night at work I heard a 'POP!' in my head and suddenly I noticed that I was temporarily breathing out the Shingles side of my nose! I have not been able to normally do that for almost two years now. Apparently my sinuses are finally healing out.

I went to get a tooth pulled and the nerves went nuts. The tooth nerves woke up a considerable amount of Shingles pain nerves. I resorted to taking Percoset for a couple nights to sleep. I am glad the paralysis is going away. It is only this intermediate time that seems like bits of hot coals on my face.

September 13: This week is the two-year anniversary of my coming down with Shingles. I just had a tooth capped in the front and it woke up every nerve in my nose, cheek and around my eye. Still taking the Neurontin and Diclofenac. I just reordered another two-month supply. Two years used to be a long time to me. It seems to have gone by in a fast blur of pain. My teeth should be in decent shape now. The pain from that will not aggravate my face anymore and the nerves can calm down. On a pain scale of 1-10, I am usually about a two or three these days. Then I take a Neurontin and it goes down to a one. People have sent me emails about Neurontin not being approved for Shingles but I tell them that for me it was a Godsend. I would not have been able to go back to work without it combined with Diclofenac.

September 30: I have come across a pain treatment that is radical but might work for some people who are desperate. It is called Neuropathic Stimulation and involves the stimulation of the spinal cord or peripheral nerves by tiny electrical impulses. An implanted lead (a flexible metal wire) and an implanted neurostimulator send electrical impulses that block the pain messages to your brain.

With the recent hurricanes where I live in Florida I had a small accident where I tripped on an antenna wire opening a shutter up and fell to the concrete, landing mostly on my left hand and my chin. This woke up a lot of the shingles pain so I am back to three Neurontin a day and two Diclofenac. I had read where it says never to injure the part of your face where the shingles were. The area of my chin was right next to where I was broke out so I guess that is why it did affect it.

October 20: My chin has healed nicely except for some redness and peeling. The nerves pain has calmed down again. I have cut the medication down to one Diclofenac and three Neurontin. It is mainly burning in the two areas that were the most broke out (my nose and my right eye). Unfortunately, when I eat, those areas move even slightly, and the pain wakes up. This is an amazing way to loose weight!

November 22: The more rest I get, the better I feel. The fire is still burning around my right eye and next to the right side of my nose and has toned down some more. The fire is going out. I have noticed that the muscles around my right eye are so constricted that my right eye looks noticeably smaller then my left eye! When the pain goes away I will do some face muscle exercises to see if I can pull out those constricted muscles again.

December 8: I had a dream where I looked at my face and saw my face as it really feels to me. I had red lightning veins all over the area that was originally broke out. My forehead. around my right eye, cheek, nose and mouth. In the dream I was able to 'melt' the little red lightning bolts away and fade them out. My face is feeling better! I do this exercise periodically during the day now...

I have noticed that my right eye is looking noticeably smaller then my unaffected left eye. The muscles have been so constructed with pain around my shingles eye that they have tightened around the eye and make it look smaller. When my face feels good again I will do face exercises to pull these muscles back where they should be. I have made a note to take a picture of my eyes to show this...

December 11: I just want to mention that I have not been to the neurologist for over a year. There is nothing he can do but help me with the pain while the fire on my face gradually burns out.

The swelling inside my mouth is going away. I am now able to wear my dental partial all day without too much pain. I had been putting it in my mouth only when I ate. I have been continuously loosing weight through this whole process. With a choice of pain or food, lots of times the pain won. Soups are not very fattening.

January 1, 2005: It is very hard to believe I have been having these pains for 2 1/4 years. My nose is waking up from paralysis and is on fire! So is the area above my right eye. I am on 2 Diclofenac and 2 Neurontin daily. This is the most horribly damaged area so I am optimistic that when the skin and underlying tissues all wake up the pain will finally go away!!! I have some feeling in all the previously paralyzed areas now.

January 17, 2005: I have found an article in this months Wired called 'The Oldest Cures in the Book' by Steven Kotler. Eric Buenz, the Mayo Clinic researcher, has discovered another wilderness to scour for promising pharmaceuticals; archaic medical textbooks. One of the old cures involved a remedy for Shingles from the Wild Cadju Tree. I wish him luck.

February 21, 2005: I have gotten an email from fellow shingles sufferer, Roy, whose doctor only recommended Caladryl over the counter lotion for the shingles. He said Orajel tooth pain ointment will kill the pain of the original rash. I wish I had known that when I had the rash! He also has a friend whose father has had breakouts for 45 years! He gets a salve called Traxaicin HP which he said clears up the rash in three weeks Roy is also taking a virus inhibitor (Valtrex 1GM) and going to get some Zovirax ointment 15mg on the skin. He also wants Novocain (like dentists use) to be prescribed to kill the pain anywhere on the skin. He now has a prescription for Lidocaine 2% visc sol to put on the skin to kill the pain.

As for the continuing pain, the post hepatic neuralgia (PHN) I have tried a new product called ' Shingles Rescue' from http://peacefulmountain.com . It is a gel that does help to reduce the pain on the surface area very much like the Solarcaine I keep in my refrigerator. The relief lasts for about an hour and then you have to re-apply it. When I wake up and all my pain killers have worn off, I apply either Solarcaine or this new gel on my face until the pain killers can kick in. The Solarcaine is a lot cheaper. It is about $8 and the Shingles Rescue is about $30.

My friend Ed used to say that when he wakes up in pain he knows he is still Alive!

March 21, 2005: Today I found out I have another skin disease called Bullous Pemphigoid. I have been saying how my shingles neuralgia pain has been increasing lately which I thought was because of the tooth infection. This new blistering rash, Bullous Pemphigoid, comes in a variety of areas with slightly different names. I thought it started out as about a 3-inch by 4-inch patch of blisters, which break and look like lesions, on my butt. (No pictures here!) However, about a year and a half ago I started breaking out in the corners of my mouth every time I took penicillin for a tooth infection. Also, my left eye was very irritated. Turns out this is all related. The rash on my butt is Bullous Pemphigoid. The rash in my mouth and eye is Ocular Cicatricial Pemphigoid

My new dermatologist, Dr. Jeffery Wilderson, did a biopsy. This apparently is the only way to diagnose this disorder. Since I had never heard of it I searched for it on google.com and found much information. This is an autoimmune disorder and it is not infectious. It seems to occur in people that are over 50, who have had a previous skin condition, who have taken a lot of penicillin or NSAIDs. This is still being investigated; however I have all the preconditions. I take an NSAID for the shingles neuralgia and I recently was taking massive doses of penicillin for the tooth infections. I have now had two teeth pulled out so I hope I am done with that. The usual treatment for any Pemphigoid apparently is any type of penicillin ointment to cut down the risk of further infection along with steroids. Since the ointments were not working for me and it was about to spread all over my butt, in desperation I painted the lesions and blisters with iodine. After 14 seconds of intense pain from the iodine, it calmed down and I went to bed. The next day it was amazingly improved! No new blisters came out either. So I kept up this new treatment and for convenience I put one-ounce of clear decolorized iodine, which you can buy at drugstore.com, into a four-ounce spray bottle and filled it up the rest of the way with water. I started spraying it a few times a day and the infection dried right up. I only have a few of the big beginning scabs left and today is March 28, one-week later. This is a one-week treatment for what I read on the internet usually takes 1-1/2 to 6 years! The decolorized iodine does not stain your clothes. It is clear - not orange. I would suggest starting with the area of a hand and then work your way out. Otherwise you will not be able to stand the original pain of the iodine on open skin. Once it starts healing, the pain goes away. I also started putting a dab of iodine on the corners of my mouth and gargling with a salt and iodine solution to kill any infection in my mouth. My corner mouth sores are now gone. In my eye I put cold water on a que-tip and then sprayed it with my water and iodine solution. Then I diluted it again before wiping it along the corner of my left eye and along my bottom eyelid. The redness in my eye is almost gone. Also, iodine does not leave scars so hopefully I won't have any scars on my cornea to start me going blind.

April 9th: The Pemphigoid blisters and lesions are healed up. They appeared about March 1st and by today, with the clear iodine treatment, the biggest scab came off.

April 19th: I got an amazing email. Here is a woman who lost her vision in the shingles eye for two months. Although her vision is back, it is still blurry in the left eye. Surgery may be required to completely fix it, but the eye specialist wants to give it a full 6 months to recover on it's own. She was in the hospital for 8 days. Her name is Cheryl. She went to the Dentist first too and he started a root canal!

The good news is that her vision and her strength are coming back but the bad news is that she has had a flare-up already. She believes the flare-up is because she put makeup on. After two months she has little crusty spots where the blisters used to be and it has even swollen her left eyelid again. She lost the lashes on that eyelid. During approximately two months she lost 50 pounds! I have lost about 20 pounds. Shingles in your mouth has got to be the most painful diet there is! She also said an ointment called DIBUCAINE OINTMENT USP, 1%, helped stop the pain for hours. It will be with the hemorrhoids stuff! Hey, whatever works is good!

April 21st: My own shingles pain is flaring up somewhat because I need another tooth pulled. I am taking Tetracycline for the infection and that calmed down my face. I don't break out with blisters. I just get the neuralgia pain. I had to get some football mouthguards from the Sports Authority so that I did not grind and clench my teeth and make my mouth hurt worse than it already does. The mouthguard helps a lot.

The face has to be the worst place for shingles pain...anywhere else I would just put a Lidocaine patch on it and wrap it up. The Lidocaine would numb it for a while although not long enough.

June 1st: I am doing pretty good since my teeth have healed up somewhat. I am going to get three more teeth pulled before I get as bad as before. I did take some more penicillin and subsequently the pemphigoid did start to break out on my lower back. I immediately started spraying the area with the decolorized iodine and it went away. I have finally figured out what shingles pain feels like: Barbed wire embedded in your skin down to the bone with red-hot charcoals caught in between the barbed wire.

July 7th: My mouth is healing up nicely since I had the last tooth pulled. The pain has receded accordingly in my mouth and face. I can almost forget the neuralgia sometimes. I am still taking two Neurontin and two Diclofenac every day - actually a little more than that since it seems to last about 10 hours and then I can feel the pain cranking up. It is not that the pain is so excruciating like it used to be anymore, it is just that it is always there. Like the Chinese water torture where the drips of water just keep coming - the pain just keeps coming from the shingles PHN.

After I finished taking the tetracycline from having the tooth pulled, I did break out with one pemphigoid blister just like clockwork. I have been spraying it with the iodine water and it is healing and I have not broken out with any more blisters.

"There is a cure for shingles practiced widely in Ireland which involves a 3rd person pricking their finger with a pin to draw blood and then applying this blood to the shingles lesions. The cure seems to be effective almost immediately. Pain disappears within 24 hrs and the lesions just seem to go away silently. My father was cured in this way as have thousands of people in Ireland. Of course there are no formal records of any type because orthodox medicine pours scorn on such 'cures' (as it always has throughout history) and refuses to believes that they work or even can work, despite major evidence to the contrary.

So I have begun to examine this 'cure' and have an immunological explanation up on a website at www.fastpages.com/shingles/shingles.htm. Perhaps you would have a look??

I intend to follow this cure up until I have it proven or disproven. And it almost certainly can be proven and elucidated scientifically. Because an advantage I have is that I have seen it working and continue to see it working! Its like knowing the result of the game beforehand!! Now I just have to play out the game. It is still being widely practiced in Ireland to this very day, probably on a daily basis, despite HIV, hepatitis etc etc. In fact one doctor here in Carlow when he couldn't cure his own shingles despite treatment with Zovirax, gave in and went to the 'healer' and was cured. What I can't understand is how this doctor did not suspect a scientific immunological explanation. Surely he doesn't believe in magic or voodoo?:-). And just a quick word on blood borne diseases (HIV etc) -- if a person is well and DOESN'T have any disease then their blood is safer than water - in fact its far more sterile than water. Viruses, bacteria, that would live in water would be killed in blood. So the practice is absolutely safe if you are sure the person doing it is not sick. Which of course was not an issue 30 years ago, or for the centuries before that, since this cure has been practices for centuries.

Also the 'healers', 'curers', 'quacks' who are practicing this cure are not generally known by such names. They are just known as people who 'have the cure for shingles'. They are typically upstanding members of their local communities and well-known business people, and well-trusted. People suffering from shingles just go to them, ask them for the cure, they do the 'blood thing' in 5 minutes and that is the end of it!! No payment, no praying, no voodoo rituals, no mumbo jumbo - no nothing!!! Just do the 'cure' business and go home - shingles disappears!! End of story!!

May 25th, 2006: I am inching along recovery. It only hurts in the places where there was the most damage. Around my right eye and along the right side of my nose. The paralysis in my nose is mostly gone. I can feel again when my nose is running! Unfortunately, sometimes a spasm of pain and itching goes through my nose and makes me take a moment to stop to let it pass. This is a small price to pay for again having feeling in an area that was as numb as wood. Maybe wood is not as numb as my nose was...anyway, movement and feeling are good, even with some pain. Since the most-damaged area is waking up, I have added half a Vicodin twice a day to the Neurontin and Diclofenac (I found out Diclofenac gave me bleeding ulcers which have the possibility of changing into Lymphoma so you probably need Percoset instead. Don't take Diclofenac.) I have been taking.

May 25th, 2006: The FDA has approved the Shingles vaccine that was in trial for people that are over 60. The vaccine is said to prevent half the cases of shingles that would have occurred. The vaccine does nothing to help existing cases of post herpetic neuralgia (PHN).

June 24th, 2006: Areas of my face that I did not even know were paralyzed are waking up and burning. The bottom right of my nose where I had the big scab is on fire and my tongue is burning on the right side! If it did not hurt so much it would be funny! How many people can say that their tongue is on fire? Anyway, I still have some of the Lidocaine ointment and I put that on the outside and the inside of the right nostril. There is not much I can do about my tongue except take the Neurontin, Diclofenac, and Vicodin for the pain. On the other hand, I can wiggle my nose again!

I am having some chest congestion issues. My rheumatologist is running various tests. So far the congestion is not caused by anything identifiable. I go back in September for more tests. I figure I might be having some kind of reaction from taking these medications for almost four years now but I don't know anything specific yet.

The good news is that the level of pain I go through every day is down. This has happened in the last several days. I have not had any dental issues to aggravate the shingles pain. Any dental injury to the shingles area causes the pain to skyrocket. Later on this year I am going to have to get teeth pulled in the shingles area and I am definitely not looking forward to it.

August 9th, 2006: I have had all my teeth pulled and am going to dentures but since 5 of the teeth were on the shingles side it was basically, HELL. My mouth is finally healing and should get a lot better soon since all the infection from the teeth, which was activating the post hepatic neuralgia, will be gone. I have been going to my customer support job for two weeks without teeth. Luckily, I talk to people on the phone and most people do not actually see me during this time. Maybe I will be able to stand the teeth next week.

September 13th, 2006: I am commemorating the fourth anniversary of getting shingles. Her we go, off to a fifth year of post hepatic neuralgia (PHN). My gums are finally healing. Try never to injure the shingles area. Not even a sunburn. A whole hornets nest of nerves wakes up.

The most damaged areas next to the right side of my nose, my right upper lip and inside my mouth are waking up now. By this I mean the paralysis is going away and I can feel the burn (like charcoal on my face). I have no more areas to wake up so this has to end this year!

October 5th, 2006: I am receiving emails from people who repeatedly get shingles back. The medical reference stuff says this is not supposed to occur unless your immune system is compromised. So we all need some immune boosting vitamins and a lot of fresh vegetables in our diet. Another medical myth seems to be that if you get shingles more then once, that you do not get it in the same place. This also appears to be wrong from what I hear from people, who get shingles back every few years in the same place.

Protect the shingles area from being injured and don't let the area get a sunburn. It would be Hell on your skin again! It won't break out but all the damaged nerves will start on fire. That is what happened in my mouth from having the teeth pulled. It is finally healing. I got a dozen bone shards from how badly infected my jaw was in the shingles area. Had to see an oral surgeon to get them filed down and the after-pain was near the top of the scale because of where it was.

November 24th, 2006: I have to find a new Neurologist. After four years or the usual treatment my neurologist is retiring from private practice! Who knows? They might know something else I can do...

The paralyzed area around my right eye and along the right side of my nose is coming alive again and with fire! My mouth is healing but my temporary denture is very irritating in the shingles area. All the creams that hold the dentures in, burn like hell when I first put the teeth in my mouth. It calms down after a while but I can always feel it. My mouth is not as on fire as my nose and eye. I can't chew on that side though. I can't believe I still feel like this after four years and two months...

December 27th, 2006: My new Neurologist is Dr. Martin Lesser in Tamarac, Florida. I was quite impressed with him since he pointed out something very interesting during the exam of my face. I had told him that my PHN was going down gradually when two years ago I smashed my chin on the concrete after one of the hurricanes. He believes my jawbone may be slightly out of alignment and is irritating my face. I go to the dentist next week. My PHN is in what I hope is the last flare-up now since the hardest burn is right along the right side of my nose and around my right eye. It has nowhere else to retreat! This is it! The most damaged area. My nose just feels unbelievable right now. How many people have to go around with their nose on fire? When my nose drips I get awful pain spasms. I have to rub my face and temporarily make it feel worse and then it all calms down and settles in again. Dr. Lesser agreed with my existing pain medication of Neurontin and Diclofenac. I asked him about Lyrica. He said it had side effects and since Neurontin is working for me I should not take Lyrica. I found where Lyrica is available online from Europe without a prescription. Apparently it makes you a lot more tired and dizzy then Neurontin does. Dr. Lesser did have something new for me to try which is a Neurontin gel. It does work. I just wish it had an order of magnitude more Neurontin in it! It does need a prescription since it has some Neurontin in it mixed with a non-greasy, non-running, non-melting gel. The real nice thing about it it that you can put it right around your eye and it does not run or melt into your eye. If you want to try it, you can get it from Arthur's Original Pharmacy, 5816 N. University Drive, Tamarac, FL 33321, 954-726-1911. It is called "Neuropathy 2% Gel w/n\Neur 30 gm". You will need a prescription. I also still take at least one Vicodin a day from my primary doctor, Dr. Barr. If I have a headache I also take two 500 mg Bayer aspirins. I don't want any more Tylenol then what is in the Vicodin.

February 15th, 2007: I am having a hard time trying to get used to dentures. The post herpetic neuralgia (PHN) in my mouth from the shingles is making it very difficult to get used to the dentures. I have not been able to chew on the right side since the shingles came. I eat whatever I can on the left side. I am hoping to be able to keep the dentures in long enough to be able to eat some real food. I am still loosing weight.

I tried "PHN No More", which is a $26 a bottle oil that I found on the web, that is supposed to stop the neuralgia pain, but it did not help me much. I had to try it... Maybe in less serious cases where the damage was not so deep it would work better.

I also have a cold. Now that my nose and mouth are not paralyzed anymore, it is quite an ordeal to blow my nose. I am going through my painkillers too fast...

February 23rd, 2007: I have heard that Colloidal Silver clears the open shingles sores within 24 hours. Since my open sores are long gone I can't test this, but it would be easy for any of you out there with open sores to try Colloidal Silver, which kills virus, bacteria, and fungus. If I ever break out again I will definitely use it. I tried it for a cold and strep throat and it worked great. For the first time in years I did not have to take pennicillin.

April 28th, 2007: As I drove to work today I had all four windows of the car open on the freeway. This is the first time the wind did not hurt my face. Sure, I have taken a handful of painkillers, but the wind still always hurt so I always had to close the windows no matter if the air conditioning was working or not. What a wonderful feeling! The wind felt like caresses on my neck and cheeks.

Last week I found out I have quite a large peptic ulcer so I can't take the Diclofenac anymore. I have doubled up on my Lyrica and Hydrocodone for the moment and am taking four Neurontin every day. This is working. The Diclofenac used to erase a corner of the pain that nothing else did. Somehow it appears to be related how getting treatment for the ulcer has calmed down the shingles neuralgia some. Apparently the stomach was irritating the throat which was irritating the nerves damaged by the shingles. I can feel that some of the pain is gone.

I am having a very hard time trying to get used to my dentures with the shingles neuralgia in my mouth. When I take enough pain killers and put in both the upper and the lower dentures, I can eat something but it hurts to chew and press down on the damaged gums. Usually I just wear the top denture so my mouth does not look so sunken in, and I take it out when I am alone.

May 31st, 2007: I am making it without taking the Diclofenac but I am taking more Hydrocodone and Lyrica. Diclofenac is a real stomach-burning NSAID but it worked for me. I am getting treatment for an ulcer now...

July 1st, 2007: I am still getting along without the Diclofenac. I now believe that it gave me the ulcers. It was working for the pain though. It takes two more Vicodin a day to do it now instead. Most days now I take two or three Neurontin and two or three Vicodin, plus occasionally two Lyrica.

September 8th, 2007: I am having other health issues. The doctors ran blood tests to check for lymphoma, which they think they may have found in the ulcers. Apparently, 30% of people who come down with shingles also end up having some cancer issue or already have cancer. So, if you or someone you know gets shingles, a Pet Scan or other additional tests would probably be in order just as a precaution. No cancer. Just a bleeding ulcer which is bad enough. I am digesting myself and I am a Vegetarian! The doctors think I got it from the NSAID Diclofenac which I was taking twice a day for shingles neuralgia. It did kill pain I otherwise would have had.

I have some wonderful news. I have found a pain spray which works GREAT. It is at amazing-solutions.com. Try the pain spray bottle and the little headache roll-on which contains the same liquid. I roll it on my nose and the relief is Heavenly. I also spray it into my wet hair after I wash it in the shingles area.

November 7th, 2007: I am having other health issues. The PHN is still burning and new areas have awakened. I did not even know that half my throat was paralyzed, and half my lips. Hurts to kiss. I keep thinking, that's it now. It can't go any further. My face is segregated into Pain - right side, and No Pain - left side. It goes right down the middle of my face from my chin, all through my nose inside and out and then through my hair up to the top of my head. I take four Neurontin a day and two Vicodin plus I use the pain spray.

Good news on the ulcer. It is gone! They put the camera down my neck and gave me a picture! Basically, as soon as I stopped taking the Diclofenac in the spring, the ulcer started going away. Since the Diclofenac is a powerful NSAID, it not only killed the pain of the shingles PHN, it killed the pain of the ulcer it was making! The second Vicodin I am taking now does not kill as much pain as the Diclofenac did.

I saw my shingles doctor and asked him when the pain would go away and he said another year or two! AGGGGrahhhhhh!

2008

February 29, 2008: I have been struggling through a series of eye infections which drove the PHN nuts and lit my face in fire. The eye infections come from having dry-eye and dry-mouth from various medications. I am taking the Neurontin, Vicodin, and on-and-off Flucanozol and Reglan. Flucanozol is a yeast killer and Reglan is for acid reflux. The pain is worse now but I am eating better even though in pain...