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maya

Pune, India

#1 Feb 20, 2009
Im 39 yrs old female. I have have getting shingles since 10yrs. Initially it used to be once in 3/4 months, now almost every month! Also the blisters are smaller now. This time I have no blisters but severe back pain all along my spinal cord, rib cages and sides. Can shingles spread internally and damage my organs?
I take Valtrex 1gram 3 times a day when I have outbreaks. My doctor wants me to get these tests done, CD4 CD8 ration, serum immunogobulin levels, se protein, tuberculin test. What are these tests? Im really scared. Anyone having similar symptoms?
hollyheart09

Glasgow, KY

#2 Jun 15, 2009
I am 34 yrs old and I have been getting shingles since I was 13. As I get older the outbreaks seem to get more frequent. I have another outbreak now and the pain was so unbearable I went to the doctor for the pain. She is going to start running tests on me also. I am scared to death. My doctor seems completely baffled by this. I get an outbreak at least 10 times a year now and on both sides of my body around my waist. Keep me posted on what happens with your tests.
taterbug

Gainesville, GA

#3 Sep 21, 2009
I have had them at least 20 times for the past 7 yrs- started when I was stressed (planning my wedding), later it seemed to coincide w/ menstrual cycle, now I have had them twice in 8 weeks and neither menstrual nor stress seem to be playing a factor. Mine are on my backside, close to tailbone/left hip. Same place every time. The only test ever run was a culture to confirm for sure it was shingles-after about 8 times of getting them.
foxxylady

Nottingham, UK

#4 Dec 5, 2009
Hi there I feel for all of you. I have had shingles now for 20 years and I relate to all of you and your comments! Mine like taterbug's started from the stress of my mums illness, her eventual death, moving house, losing two dogs, having my second baby all in the space of one year!! Then I thought I'd been stung b a wasp on the left cheek of my backside but hey ho after 2 years the rash kept coming back slow at first but then to coincide with my periods and was eventually diagnosed as shingles. I was 36 when all this first started. I have been on aciclovir for the past year but it only took the rash away and to be honest I can cope with the rash its the dreadful viral symptons I cannot deal with i.e. dreadful depression, want to cry, numbness in hands, legs, feet, toes and even my throat and tongue goes numb and yes I understand all your fears when they do tests and on several occasions doctors have asked to do HIV tests on me which I have been horrified by because I do not put myself in that bracket and have therefore said I don't want to be tested for that because I am 100% certain that's not my problem but people with HIV do present with a type of shingles rash how scarey is that??? I cannot believe that there are so many cures for minor problems and yet after all the years that shingles has been around the medical fraternity still dont have an answer for shingles and take it with a pinch of salt that its just another regular illness that people get and get over it but actually there are some of us that cannot get over it and it's very, very debilitating!!!! It seems there is nothing out there that can get rid of this illness, I have tried everything from de-toxing then blasting myself with good vitamins to boost my immune system, homeopathy, normal medicines from mild anti-depressants to help the pain to anti-virals but nothing works!! The crazy thing is I never catch flu or colds my immune system is really strong with things like that but for some reason it just wont pick up on this virus!! If someone out there has found something that helps I would be eternally grateful for their advice because I am so scared of what this is doing to my body and my nervous system as each year passes as I get older my ability to be strong and deal with it is dwindling fast!! The doctors and consultants I have seen over the years have always told me that recurring shingles is incredibly rare but they are wrong I have met so many people that are suffering with this I think it is a 21st century disease that is spreading faster than they think!!
Johane

Edmonton, Canada

#5 Jan 9, 2010
To all of you out there I definitely understand. Stress brought mine on at the age of 21. It happened now and then but now at the age of 48 I get them often. Stress brings it on and being around someone who has not yet broken out with chicken pox brings it on too. I found the amino acid Lysine takes the pain away and clears it up within 5 or 6 days. My friend takes it for her cold sores and she is amazed how well it works. I am also afraid of having this and no cure because any illness can make it worse. I have also been told how rare it is to get it often but is there really a Dr.Oz in every town or city? No!
Try this Lysine, and to all of you suffering from this, God Bless you....
angelaziegman

Kansas City, MO

#6 Feb 3, 2010
wow, so I am 23 years old and I developed shingles almost two years ago while I was pregnant. I am still getting outbreaks on my left shoulder every couple months. It drives me crazy. I have taken the antiviral meds and no luck. I use a zovirax cream on the blister every time I have an outbreak and it helps alot. But you mean to tell me I will probably have this problem the rest of my life? I have done tons of research and everything I read says normal cases should go away on there own and not return. I don't know what to do but I know I don't want to go through this the rest of my life.

Since: Feb 10

Marysville, OH

#7 Feb 15, 2010
I am 51 and got shingles for the first time in June, 2009. I got to the doctor quickly and got an Rx for Famcyclovir which cleared it up just fine. The rash did not actually blister and just slowly faded away over a month or so. All was fine and forgotten until October when I came down with it again. Since October I've had it every 2-3 weeks and have it again now. The previous outbreak started on January 21st. My doctor ran blood tests looking for an immune system compromise and everything came back normal. I am now taking Acyclovir 400 mg. twice a day for a year. Guess what? I woke up this morning with the rash coming back. I'm reading that there is a vaccine but it is only recommended for people over 60. Anyone out there get it this often and what do you do? What has your doctor told you? I am lucky in the sense that my pain is minimal from the rash. I had surgery on that hip 2 years ago and I am mostly numb there from the surgery. I wonder if the trauma from that surgery might have something to do with this. Its frustrating to say the least.
dollyG

Madison, WI

#8 Feb 27, 2010
I have to say that finding this thread has been amazing! I too developed my first shigles outbreak when I was 21 (I'm now 48). My symptoms are texbook and stress is my trigger. Although I have been diagnosed by more than one doctor, The hardest thing to convince my family of is that I have recurring shingles. No one believes that this is even possible. So, reading all of the other posts here has re-assured me that I am not nuts or that several doctors have made a mis-diagnosis.

For me, Acyclovir is the medication that does the trick. I have tried the Lysine and it didn't do a thing for me. I know when I have a flare coming on and immediatly take a pill. I do that for about 3 days and I usually can arrest it before the blisters break out. I can also recommend calamine lotion if the blisters do appear. It worked when I had chicken pox as a kid, and since this is related, it works here too.:) I also take a prescription anti-inflamitory for the pain if I do get a full blown break-out. That helps a lot.
Valerie Enzer

Papakura, New Zealand

#9 Mar 1, 2010
I have had chronic shingles with intense pain in lower back for over 3 years. Doctors are useless. It makes me tired, depressed, feverish, and headaches as well as the intense agonising pain in my back. The shingles recurrs every 2-3 months. Does anyone else have all these symptoms?
foxxylady

Exeter, UK

#10 Mar 2, 2010
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..........
taterbug

Cornelia, GA

#11 Mar 2, 2010
reading your post-let me list some of the things I have noticed and see if anyone else relates:
Fatigue-about 24 hrs. before outbreak

They are always in the same place-left hip/buttocks and come around to the front of the upper leg.

most of the time seem to be maybe triggered by hormones- usually, but not always, occur during menstrual time.

"raw skin" feeling down the backs of the leg sometimes occur about 24 hrs. before outbreak.

not as painful as most people describe shingles-I can still work. This seems to be what alot say on the internet that I find that have them reoccurring.

I too have the acid reflux, I think. Not extreme, but feels like I have something stuck in my esophagus that just want move. Interested thought that I never had heard about, so I will now monitor more closely. My shingles have been going on for about 7 yrs. now-sometimes once every 6 months and sometimes every 6 weeks. 2 pregnancy and neither time did the shingles show up-ironically.
foxxylady

Nottingham, UK

#12 Mar 2, 2010
Fatigue yes terrible and want to cry. Feel very low.

How familiar!! I have always told my doctor that I felt it was hormonal as I used to get an outbreak every month without fail with my periods. I always said that if there is one part of the menopause I am looking forward to is that no periods - no shingles!! How wrong could I be. As my doctor pointed out during menopause I am more hormonal now than ever so the shingles are coming fast and furious!!

I get mine below my spine either left or right buttock or both!!

The pain comes below my left shoulder blade really deep inside almost feels like I might have a heart attack. This has only started to happen in recent years. It feels like when all your muscles tighten due to sitting wrong or during stress but you cannot shift the pain.

I still work but I have to say the strange thing you get stuck in your throat feeling I have had too since early December along with a burning sensation on my tongue like it is covered in pepper. My mouth is always very dry and when I lick my lips I get a dreadful metallic taste. The numb sensation is similar to that of the PHN I get in my skin that you describe as "Raw". It is driving me insane because I am a real foody and sometimes I get so that I can't even taste my food!!

It makes me feel happier knowing, as one of the previous posters said, that it is not me going mad because I too think my family consider me a hypochondriac of which they couldn't be further from the truth as I love life and this is a real hinderance to me!! I don't have time for illness as I am sure many of you dont either.

Maybe together we will all come up with the answer!!
Valerie Enzer

Papakura, New Zealand

#13 Mar 2, 2010
Thanks to everyone for this info. This is actually for my sister Valerie, who lives in a remote area of S.Africa, on her own. I will forward all this on to her.
styles1959

Warwick, RI

#14 Mar 13, 2010
Hi Everyone,

I statred with the pain last Friday with really no pre-warning. Its on my right backside below my ribs. The pain became so intense the next day I made a call to my Doctor and he put me on Valtrex. At this time more than a week later I have never broken out with blisters. The pain is Horrible. I stated with a 500mg Vicodin and that simply was not enough. So now I'm on something stronger and taking it every five hours to hold back the pain. Has anyone out there that has had a shingles outbreak have not had blisters appear? I almost want them so the pain will go away..Will the pain simply go away on it own..Any suggeations would be Great!
Gilly - France

Bordeaux, France

#15 Apr 9, 2010
I was interested to hear from Foxxy lady that she says it is Shingles. I have exactly the same on both flanks, and the medical profession have always told me that it is Herpes Simplex in a funny position. I have exactly the same symptoms as she does, and it is very painful. I agree that you should not take medication, and have used Rescue Remedy cream for years on the lesions. I also find using a Chi Machine helps, as it oxygenates the body, and apparently viruses find it hard to live in oxygenated environments. I find the only solace I have from the pain is Ibuprofen.
Pam

Olympia, WA

#16 Apr 11, 2010
I have shingles right now, but it sounds way less severe than all of you. But I have three friends that all swear that Vitamin B-12 Was the miracle that cured them. It has to be Methylcobalmin which is not the kind you find in most stores. (the average B-12 is Cyanocobalimin and has almost no benefit.) I found it at a vitamin center and online. My friend who had shingles for over 6 months and was down to 89 lbs and unable to function he was in so much pain, said he felt the difference in hours. He recommended 4 a day. It has really helped me since I started it, too. The ones I got are are sublingual with a pleasant taste. This form of B12 is easily assimilated and you can't take too much. There are no side effects. I say go get it NOW.
Kat

Abbotsford, Canada

#17 Apr 13, 2010
You guys ever heard of this? Mine has been happening every time for 5 or so years and manifests in my mouth! I get blisters on the roof of my mouth and then after a week or something they burst and just raw sores, sooooo painful. As well my doctor seems perplexed, mentioned shingles, but doesn't think of anything else and nor can I, of course too fatigue, and I didn't notice before but I do have lower back pain this time, not sure if its coincidental. But it is happening with a cold or something, and realllly often, I hate it!!! I just ask for codeine, is there something better?
sue

Ashburn, VA

#18 Apr 15, 2010
Finding these threads is so helpful. It does seem like recurring shingles is becoming more common. And it has lifted my spirits to read that others have the same symptoms I do. I've lost so much weight and was really worried, but reading that others have had this happen gives me more hope and strength to keep trying to fight. Thanks for all the helpful tips. As someone said in another post, if all of us do communicate we might be able to come up with solutions. It certainly doesn't seem like the medical industry is trying. Maybe you have to suffer from it to really understand how horrible chronic shingles is.
foxxylady

Upminster, UK

#20 Apr 21, 2010
Hi, I'm back again. I have been reading with interest all your concerns and have been hoping to come back to you with better news as I have been taking a course of Coriolous. It's a natural remedy made from a special type of mushroom plant found in Japan and is used extensively there as a treatment for cancer amongst many things. I have also been taking B50 complex. I wanted to tell all of you that I had at last found a cure. I'm afraid I haven't although I am pleased to report that when I got my bout of shingles this month I went through far less pain and coped really well. I am going to continue taking these because if I felt that well after only one month then they must be doing some good and hopefully it will get better the longer I take them. I have noted a few of you have mentioned B vitamins so we may be getting closer to finding something that works!!! I feel the B vitamins are helping with the PHN. Recently though I have started to get more of the burning sensation in my mouth, my mouth is really dry and swallowing feels difficult and I get a dry cough too has anyone else experienced this? I am not sure if this is a seperate issue or whether it is PHN in my mouth? I have also been keeping up my alkaline diet and have found that I have felt better as a result of less acidity too!! I clarified the point that virus survive well in an acidic environment that is why I have gone onto this type of diet because I do tend to suffer with acid reflux. I truly do feel for all of you because I know how poorly this makes me feel month after month. Kind ones to you all xx
Ruy

Houston, TX

#21 May 11, 2010
Hi all,
After searching for natural remedies and trying some with no success
I was about to give up when I told my sister what was happening to me
And she told me that “Al my brother in-law” had shingles last year and she had found a natural remedy that worked on him maybe I should try it.
I did not think twice and when she told me the ingredients I had my doubts
But to my surprise it is working!
Here it is: sour cream and olive oil…yes that is it!
What my sister did was to mix 3 table spoons of sour cream and for measuring the
Olive oil she use the bottle cap and just half a cap of olive oil.
She apply generously and the feeling was a great cooling sensation. You have to keep it until it dries up. Later I felt the itching and I just had to take it but after awhile it went away.
Well it should be apply 3 times a day and if you happen to be at work I suggest take
Some alo vera to stop the itching and cool the skin. again it is working for me and I just want to share this with everyone that is suffering from this!
English is my second language so I hope I made it clear for everyone.

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