recurring shingles
Deanna

Oklahoma City, OK

#654 Jun 28, 2013
So how many if any have had the vaccine? Did it work or help at all? My new doctor appeared very interested and is going to do some further checking, which is a huge relief since so many doctors just blow us off because they believe it's just a one time thing.
Ronna

Bountiful, UT

#655 Jun 28, 2013
Has anyone tried Terrasil? Saw it advertised on this page. I did try 024? I did like it but it has a very strong mint smell that gives my husband headachs. I am not putting him in pain because of my PHN. He already has to put up with so much. Gets all the groceries, does the yard and house and works and most of all, takes care of me. I am NOT fun to be around right now. I am sooo sick and tired of the pain and all the drugs and not being able to even drive. I hate being housebound. Have pushed away all of my friends and family. I guess it is because I never know when I will end it all and want their feelings to already be less towards me. So many people here have ended their lives and I am thinking about it way to much.
Ronna

Bountiful, UT

#656 Jun 28, 2013
please someone say something because our son is getting married in august and i don't want to be the cause of a black cloud on it. right now august just is so far away and so many seconds of pain please someone say something
help me help me
-_- oasis

Buena Park, CA

#657 Jun 28, 2013
Ronna wrote:
please someone say something because our son is getting married in august and i don't want to be the cause of a black cloud on it. right now august just is so far away and so many seconds of pain please someone say something
help me help me
I had reoccurring symptoms every 2-3 weeks. What helped me a lot was garlic. I only had small outbreaks, so it works very well on me. Symptoms went away twice as faster then when I was taking antibiotics.
Here is what I did:
- Garlic pills (garlic oil extract 1000 mg)(I use those from 99CentsStore)- 4 times a day. Warning: be careful if you taking any blood thinning drugs because garlic also a blood thinner. Do your research on this.
- applied raw garlic slice on blisters at night. You'll feel lots of burning but it's actually kills virus.
JKR

Morristown, TN

#658 Jun 28, 2013
Stress is such a major factor in this recurrent viral outbreak. I just returned from a 1600 mile round trip drive to my sisters home. Her husband was dying of cancer in their home with hospice care but he went down hill very fast. I arrived 24 hours before he passed and took over his care so my sister could get some rest. She has three teen daughters in the house and it was very chaotic the entire time. I now feel another viral outbreak coming on with low grade fever, chills, nausea, electrical shocks in the nerve where I have the PHN. I started taking some acyclovir today trying to ward this off. Those of you who are suffering with this know that you are not alone and not delusional about it being a recurrent thing. There are many good suggestions on here for dealing with these outbreaks. Please use what works the best for you and stay strong. I have better days than others but can tell that shingles has definitely altered my life as far as dealing with the pain with the PHN, lack of endurance and extreme fatigue at times. Ronna, will keep you in my thoughts and do a meditation sitting for all who are suffering. A few comments back someone mentioned that acupuncture was helping her symptoms. Have you tried something like that? I don't have access to holistic medicine here where I live but would definitely consider that if I could find a competent provider. I'm so sorry for your despair and suffering, Ronna.
heb

Dallas, TX

#659 Jun 28, 2013
I can relate!!! I developed my first case of shingles along my left rib cage in 2009. It started as intense itching, numbness, tingling then three red bumps appeared. Went to dr and got anti-viral medication. But ever since have recurring pain along left rib cage. Dull, not debilitating, itching, tingling on left side and shoulder and bumps that never really blister over. I have been lately getting the bumps on both sides. Stress!!! Is definitely a trigger. I have an extremely stressful job in the television industry, and actually just switched jobs and the job I have now is way more stressful than my last job. Ever since I started the job my side has ached and the itching, bumps have not gone away. I too am convinced this is recurring shingles. I am otherwise completely healthy. I've had a cold once in the last five years. Drinking/partying, loud parties/concerts, fights/arguments with loved ones-- all of these are triggers for my PHN/shingles. They call it PHN.. it's actually shingles that NEVER GOES AWAY. I fear these outbreaks will get worse as I get older. I'm 38. I take L-Lysine, it seems to keep it from blistering over. This is a herpes virus; so just like cold sores or genital herpes, it is the gift that keeps on givin! I am thinking about changing careers to something lower-stress. Despite the good money I make this shingles thing is not worth it. None of the literature lists anything about recurring shingles; it makes you think you have cancer or HIV. I'm perfectly healthy other than this; it is a very misunderstood and under-diagnosed nerve disease. The vaccine needs to be approved for everyone who has had chicken pox.
Sperr

Silver Spring, MD

#660 Jun 29, 2013
foxxylady wrote:
Hi Everyone again,
I did post loads of answers to all of you who have responded but for some reason they weren't posted!! I really hope this one gets there!.
To all of you who are mystified about your symptons lets me confirm that I get all the above and more!! When I first started with shingles over 20 years ago it was just a strange soreness if I touched my skin before the lesions broke out. The doctors thought I had a cold sore in a strange place!! To this day I think if they have diagnosed shingles I might not still be suffering but I was given Zovirax cream and more or less told to get on with it. Not understanding shingles I did get on with my life which was incredibly stressful at that time. If I'd have been told to rest up I may not be suffering now.
I have to really be quite strict with myself now. I notice if I go out to a party and dance and have a drink I feel wonderful and then BANG!! An outbreak of shingles because I over exerted myself. So now I get upset that I can't even enjoy myself without getting this horrible horrible disease!!
I am currently back with my accupuncturist who I have trusted for over 20 years who knows what I go through. He has put me on a course of Coriolus. It is a type of Japanese mushroom in tablet form (you can read up on it online) I am also taking a B50 complex. I am still getting outbreaks (one after the other since I came off Aciclovir in December) but I don't know if I am having a placebo effect (I doubt it cos shingles pain definitely isn't in the mind!) but I have to say I am not feeling quite so bad.
Also, and this may interest a lot of you, I have had numbness in my tongue and in my throat which has been very scarey. My doctor said I had a viral throat infection but it won't go away. I also suffer with Acid reflux and I have just read a very interesting article that virus's survive well in a very acid environment!!! I have gone towards a very alkaline diet recently and must say feel a whole lot better! I am curious to know if this is true about virus's surviving well in an Acidic body because I must say I have suffered indigestion for years and only just recently found out it was Acid reflux and whenever I have an over indulgent weekend, which includes either wine, champagne or even the odd glass of lager I get an outbreak!!
It would be good if you all consider your diet and let me know if any of us correspond to what I have just written?
Maybe between all of us we may find a way forward with this dam thing. I honestly don't think the medical fraternity give a dam about a virus which has been around forever and is actually becoming an epidemic in the "recurrent" sense of which I was told I was a very rare case!
By the way, medication only helps to disguise the lesions and keeps them at bay. It doesn't take away the symptons. I was on Aciclovir for a year. I can actually live with the lesions because you can treat the itchiness. What I cannot deal with is the PHN pain, depression and everything else that comes with it that these tablets do not deal with. The doctors know this too but they still give them to you.
As for the vaccination, you cannot have this if you have had shingles. It is only given to people over 60 because shingles is very hard to deal with in older people (as I am now finding out because mine is getting worse)and it is given as a precaution so that if they haven't had it they won't get it. So, sorry but if you've had shingles the vaccination is not for you.
I want to come back on here with some good news so I am going to keep delving into this virus until I come up with something better that actually works watch this space..........
One misperception here. You CAN take the vaccination if you have had the shingles and now you can take it younger than 60.
Barbara

Sterling, VA

#661 Jun 29, 2013
Sperr wrote:
<quoted text> One misperception here. You CAN take the vaccination if you have had the shingles and now you can take it younger than 60.
I have taken to eating about a cup of blueberries or raspberries every morning. It helps me or seemed to thwart the rash for months - still got some pain but no outbreak. Antioxidants...so try it!
Lynn Adams

Valdosta, GA

#662 Jun 29, 2013
omfg......i have found my people. I truly thought I was the only one getting chronic outbreaks on my hip and thigh. I have had them for 30 years with them becoming chronic in the last 5 years. I use olive leaf extract and Lysine and Vit c to control them. they do not stop completely but are greatly lessened.
Kyky

Victoria, Canada

#663 Jul 2, 2013
Hi everyone,

A google search brought me to this thread and it has comforted me to read that I am not alone. I too have recurring shingles that causes me a great deal of trouble. I am 21 years old and first got it when I was 16. I get it on one spot on my face, just below my right temple. It swells and gets very itchy and usually coincides with my menstrual cycle or heavy stress. I would say I experience a flare up around 5 times a year.
My immune system drops very low, and my body struggles to stay healthy. I was prescribed a topical cream called Zovirax 5% acyclovir 5% that I refer to as my 'magic cream.' 4 times daily and it usually takes away my symptoms in about 3 days.
Does anyone have any long term solutions/advice to help avoid flare ups? It's so annoying, being a young woman and having shingles on my face.
Thanks
Rachel RN

Steubenville, OH

#664 Jul 3, 2013
I am currently experiencing my 7th bout with shingles. I am 31 years old and had my first outbreak at age 27 when my first child wAs just 5 weeks old. Since then it was about every six months until I got pregnant with baby number 2. When she was about 6 months old I broke out again. When both of my children were of age to get the chickenpox vaccine, I got them vaccinated and myself got the shingles vaccine. I developed cellulitis after the vaccine and had to be on antibiotics for 10 days. I have had 3 outbreaks since the vaccine. The episode now is probably the worst! It seemed as of they were getting milder, but I guess that was just wishful thinking. With this exacerbation I had to take a leave from work and I have no vacation time built up, so there goes a whole weeks pay!
I'm just so annoyed and I wish I knew why this keeps happening to me!! There is no rhyme or reason to my outbreaks, I even recently started antidepressants. Any comments or suggestions are appreciated

Since: Jul 11

Nottingham, UK

#665 Jul 4, 2013
Ronna wrote:
please someone say something because our son is getting married in august and i don't want to be the cause of a black cloud on it. right now august just is so far away and so many seconds of pain please someone say something
help me help me
Ronna I really think you maybe need some counselling? Please dont take this the wrong way. You know I understand what you are going through because I too go through it but I have built up a group of people around me, holistic reflexologist and my accupuncturist and my hypnotherapy tutor (I am trained in clinical hypnotherapy) that understand my years of pain and what I have been/go through, yes it costs me money to see them but I know they will help me through the bad times and feed me positive thoughts and it helps me not to put pressure on my friends and family. I am a very spiritual person and I know that the minute I let negativity creep in I get more ill than I can cope with.

I think that is what is happening to you when you get yourself to this pitch. I understand all your frustrations but you must try to learn to keep calm and get help with positivity and a counsellor or someone who practices healing would be good for you to find and put your trust in. I am so sorry I dont live closer to you.....I know I once offered to speak to you on skype, that offer still stands.

I feel your pain but your anxiety, your anxious state of mind is lowering your ability to deal with the pain and possibly making more pain that isn't even associated to PHN. I know this to be true - its what happens to me when I allow negative thoughts to enter my mind!!

Kind ones, I am here for you..........

Jacky

Since: Jul 11

Nottingham, UK

#666 Jul 4, 2013
Sperr wrote:
<quoted text> One misperception here. You CAN take the vaccination if you have had the shingles and now you can take it younger than 60.
Sorry to disagree with you but you reallt can't!!

Ronna is living proof of this as she has had the vaccine and she went through hell at first but then had several months clear which made her think it had worked but you only have to read her post above to see where she is at now!! I know several others who have experienced the same.

The vaccine contains a small amount of the virus which is injected into the system. This helps to boost an already healthy immune system to recognise when to fight should you come into contact with the Shingles virus. Problem is if you have had shingles already your immune system is lowered each time it recurrs by which time it is not realistic to inject such an insignificant amount into the system to boost the immunity because the system has already failed to recognise the virus??

This was explained to me by a top scientist who works with viral bacteria's, I have explained it here in laymans terms as I am not a medical person but is sounded quite logical to me.

Trust me if I thought for one minute the vaccine would work I would have it but after what Ronna & others went through I am not so sure I want more virus pumped into me........it's hard enough coping with what I have already without having more!!!

Maybe someone can correct me on this??

Jacky (ex-foxxy-lady)
MAB

Congleton, UK

#667 Jul 5, 2013
I'm so glad I've found this page and that I'm not the only one to suffer recurrent shingles. I'm a 28 yr old female and am currently suffering my 7th episode. The first outbreak started in 2010 on my left cheek and it either re-occurs there or in my mouth on the right side on the inside of my cheek. The blisters are small and there's only ever a small cluster of them but they can be quite painful associated with numbness, tingling and when inside my mouth it literally feels as if I've been punched in the face. I also get earache, toothache and swollen glands. I take acyclovir 800mg as soon as I feel symptoms starting and this does seem to clear them up quicker than if I don't take them (3-4 days) I know everyone is different but this seems to work for me, so I would say that if anyone hasn't already, give it a try.
The symptoms I find worse, that the medication doesn't help with, is the tiredness, the headaches and the aching joints and it always lasts longer than the blisters themselves
I've seen that a few people on here are told they can work with them, unfortunately I work in healthcare so have to 'go off sick' until the blisters are dry/gone to protect any vulnerable/compromised people I may come into contact with. This is not good for my sick record as you can imagine
The doctors have no idea why this is happening, blood tests are ok and HIV is ruled out as I regularly give blood (although not for a while due to the shingles) so it would have been picked up before now. They have suggested that after this episode is over they may start me on a low daily dose of acyclovir to try and prevent the episodes happening. The only thing I can think of is stress, which I am trying to reduce by seeing a counsellor to try and help me manage my stress a bit better, but obviously hasn't worked hahaha
I'm sorry I haven't got much advice for any of you, but just reading your stories and tips has made me feel like I'm not the only one, and when colleagues, friends (and even doctors) seem to doubt that I am having shingles so often, I know that it is possible and I don't feel so frustrated about it
Best wishes to you all and here's to staying shingle free for as long as possible

Since: Nov 11

Location hidden

#668 Jul 6, 2013
I had shingles weeks ago but have reacurring pain under right breast and right ribs,wondering if you could give it to babies or anyone at this stage,PAIN was terrific, but no blisters also flu like for six weeks,Im on an ice pack now, Cant stand to wear a bra,That is miserable also hav fibromylagia since 40 years old,Im now 74, just about o give up, aIll try more 12b and the lysine one lady talked about,
Ronna

Salt Lake City, UT

#669 Jul 8, 2013
I am so sorry for leaving my hard time hanging out there. You are the only ones who know what it is like that 3rd or 4th day in a row of PHN. I was lucky to have 2 days break…it is like it just lets go of me and I can breath again. Thank you -_- oasis for the garlic tip…have always squeezed it in my boy’s ears when they had an ear infection, but have never thought of applying it to shingles. Thank you JKR for the meditation, I believe in the power of prayer and have learned so much about peace, love and Father in Heaven going through this.
I know we are loved and watched over. I also know that this is existence is a time of learning. Sometimes you just don’t feel like you can take it any more. I have also learned that God asks for our heart, a heart free of anger, resentment, any kind of ill-feeling. Have been shining a light on all my dark areas and learning lots about the power of forgiveness.
Anyway, thank you all for your understanding. No one gets it.
Does anyone know anything about Neurostimulation implant? They implant wires along the spinal column (epidural space) and also a generator similar to a pacemaker. St. Jude Medical just sent me a packet on it. Anyone out there looked into it? I haven’t dared dream about a life off daily meds. If this worked I could actually have a clear mind, drive a car, shop on by myself.
Don’t get me wrong. I still have a supportive family, darling grandchildren and sweet neighbors. I danced in the rain with my sister’s children. On good days I can cook for people who are ill and call to brighten someone’s day. It is just those long periods of continual pain and spending days in the bath with my essential oils. See I should be grateful because my life is so much sweeter than many.
I find myself babbling…sorry. Will mention again Bactine works so much better for me than the prescription ointments (which cost me $89 for the compound) and you can Bactine for $5 a bottle. Also blueberries daily and lots of veggies.
Jacky has gathered so much knowledge, listen to her people. Thank you for all the understanding you have given us.
Prayers and love your way!
Ronna

Salt Lake City, UT

#670 Jul 8, 2013
nannylove wrote:
I had shingles weeks ago but have reacurring pain under right breast and right ribs,wondering if you could give it to babies or anyone at this stage,PAIN was terrific, but no blisters also flu like for six weeks,Im on an ice pack now, Cant stand to wear a bra,That is miserable also hav fibromylagia since 40 years old,Im now 74, just about o give up, aIll try more 12b and the lysine one lady talked about,
I am so sorry for you, clothing is such an issue. I had my breasts reduced to just about nothing. They don’t touch the ribcage under them at all. I am 57 and have had outbreaks just about everywhere (not the right leg from the knee down or my right arm. I buy tricot (that soft thin knit fabric slips are made from) fold it over, sew up the sides and cut a hole for my head. That is what I wear when the kids are home for a visit and I need to be modest. If anyone has clothing ideas I would love to hear them. Oh, also knit bamboo is very soft and breathable but kind of hard to find. If I find any clothing that I think will work I always wear it inside out so the seams don’t touch my skin. Haven’t been able to wear pants for about 3 years. I do LOVE ice packs. Again would love suggestions!
heb

Dallas, TX

#671 Jul 9, 2013
I've currently got shingles on my lower right back. Underlying lower back pain is now setting in and pain along my lower spine. I am concerned about spine involvement. Does anyone know about that? Also experiencing pain on left side where I have had previous small outbreaks since 2009 & constant dull pain. Guess my lower right back will be next for the constant pain once the bumps are gone. My scalp is also tingling and I pray that I won't get this disease on my face, head or eye. What a horrible disease. Is there any current research being done on it? It is far more common and severe.than the "average doctor" knows. I just take L-Lysine and skip the doctors. So far it keeps the outbreaks in check but this one seems worse and I worry I may have to go get anti-virals. I'm 37. This whole thing started for me when I was 34, after a minor cosmetic surgery procedure. Stupid shingles!!!
heb

Dallas, TX

#672 Jul 9, 2013
Also wanted to add, I had right eye pain for several weeks in 2008 that my regular doctor, an optometrist and two ophthalmologists couldn't find a cause or reason for. Now I'm quite sure that was shingles too although it presented without lesions. In 2012 I had ringing and terrible ear pain in left ear for several weeks. Again, no specific cause. Some physicians assistant identified it as trigeminal neuralgia after looking at me five seconds and prescribed a high powered anti convulsant which I never took. I now believe all of these episodes.... are related to VSV, aka herpes Zoster, aka evil, evil shingles. Now that children are being vaccinated for chicken pox I hope shingles is wiped out for future generations. But I worry I have 40, 50, 60 (if I'm lucky) more years of fighting worsening cases of this virus.
Pat

Greensboro, NC

#673 Jul 10, 2013
Hi Pink & smc,
Thanks so much for sharing your stories. I'm very sorry for what you both have been through. I agree with you Pink this disease needs to be studied more... Also, the CDC needs to change the age for getting the shingles vaccine. I can't help but wonder if I would have received it prior to ever having a breakout if I would be in this boat right now! I have been in the 'clerical' medical field for over 20 years and it's so hard for me to keep my mouth shut. I have seen many things, but I have found this is a major issue and it's way more than they know. Maybe I can figure out a place to start and make changes so that no one else will ever have to go through what we've been through. Thanks again for sharing your stories! Take Care :)

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