recurring shingles
Dee

Bethel, NY

#182 Jul 28, 2011
I have had reoccurring Shingles since 1993, and like many of you I have been tested for EVERYTHING...the final verdict was Herpes Simplex in a weird place and also because I have Lupus it tends to bring on the Shingles on more often. Mine would almost always follow my Menstrual Cycle...I get them in the same place my left or right lower back. Once in a while they have gone higher and I get them on my back. I take Valtrex when I feel the first tingle. My lower back is scarred really bad..I agree with many of the other posts the worst pain for me is the sensitivity in my leg before it comes...it shoots up my leg, I have found that Advil helps with it. I have gone to an infectious disease specialist for this... I like this post and finally don't feel alone...MY doctors have all been baffled by this.
Ronna

Woods Cross, UT

#183 Jul 28, 2011
Going on day 9 with NO PAIN! What a wonderful break! Life is good! Just no accounting as to when the neuropathy pain will hit...must learn to enjoy these days when things are good. It did take a day or so to regain my energy.
Noelle

San Diego, CA

#184 Jul 30, 2011
tammysalterego wrote:
I am so relieved reading all of these posts. My doctor refuses to believe that my recurring outbreaks are shingles. I have had four since June 2010 and besides the first outbreak, I never let it get to the stage that I have blisters because I simply cannot miss that much work. I have pregnant coworkers and coworkers that have not had chicken pox and I am at risk of infecting them. But my doctor tells me that I cannot get shingles more than once. I KNOW this is what I have but he simply does not believe it. I am suffering another bout again but this time I am allowing the infection to progress so that he can test my blisters and give me an answer as to what it is. He tell me that it is probably genital herpes which is unbelievable to me since I have been with the same man for more than 20 years and never had an outbreak until recently. I know my body and the blisters I have occur on my hip, not on my genitals so how could this possibly be genital? I wish my doc would listen to me. Instead he poo poo's me. Reading these posts has convinced me that I am having recurring bouts of the shingles. Guess it's time for a new doc.
Look up valley fever..it is in San diego county. I am currently trying to figure out what is up with my health and a friend mentioned this.

Since: Jul 11

Nottingham, UK

#185 Jul 30, 2011
when I post nobody seems to listen. You all say doctors dont listen but actually you are all so concerned about whether you have shingles or not that none of you are actually listening either!! You don't seem to want to take the offer of help when it is given.

I have posted my email address on here so many times because I really believe I know now what is happening to all of us and I have suffered for over 20 years and am now shingles free.

SO if you really want help this is my email:

I know I have found the answer after 20 years of suffering, if you want help please speak to me through [email protected] no doctor will ever listen to you because they really don't know enough about this. I have seen them all and to be honest all they want to do is dish out meds that actually cause you tummy problems but never get rid of the virus!

Kind ones

Jacky
Ready for answers

Mount Pleasant, TX

#186 Jul 31, 2011
Jacky Nottingham England wrote:
when I post nobody seems to listen. You all say doctors dont listen but actually you are all so concerned about whether you have shingles or not that none of you are actually listening either!! You don't seem to want to take the offer of help when it is given.
I have posted my email address on here so many times because I really believe I know now what is happening to all of us and I have suffered for over 20 years and am now shingles free.
SO if you really want help this is my email:
I know I have found the answer after 20 years of suffering, if you want help please speak to me through [email protected] no doctor will ever listen to you because they really don't know enough about this. I have seen them all and to be honest all they want to do is dish out meds that actually cause you tummy problems but never get rid of the virus!
Kind ones
Jacky
Since we are all on here, why don't you just share the information with us here? We are all obviously reading the posts and I've seen your's several times, but I am not one to contact someone I do not know via my personal email address...
Carolc

North Haven, CT

#187 Jul 31, 2011
Ready for answers wrote:
<quoted text>
Since we are all on here, why don't you just share the information with us here? We are all obviously reading the posts and I've seen your's several times, but I am not one to contact someone I do not know via my personal email address...
I agree. I am sorry, but it feels a bit scammy to me that we need to get the cure privately.

Since: Jul 11

Nottingham, UK

#188 Aug 1, 2011
Carolc wrote:
<quoted text>
I agree. I am sorry, but it feels a bit scammy to me that we need to get the cure privately.
There is no "private cure" about it at all and its not scammy its just too long winded to explain on this website, that is the only reason. Quite a few on here have emailed me already and are happily trying what I have advised and feeling lots better. I absolutely understand all your concerns so why not set up a seperate email address and contact me? I have a good heart and am willing to help all of you. I do have questions that need answering which is another reason why I can't post on here because I need to know what advice to give you. What will work for one will have to be adapted to suit another. So no I am not a scammer and yes, I am out to get as many people together as possible as I want to bring this virus, that is becoming more epidemic in its form than it ever was, to the attention of the powers that be to help us all!!!
However, if you don't want to contact me I absolutely respect the privacy of you and everyone who posts on here.
Kind ones
Jacky
Leslie

Cleveland, GA

#189 Aug 1, 2011
same thoughts have went thru my head-I am a little weary to reply to e-mails I do not know. You have to understand, we don't want shingles but we also would rather not have our identies stolen or bank accounts emptied. Your heart may be in the right place, but society has taught us to be careful. Have you considered setting up your own website w/ information?

Since: Jul 11

Nottingham, UK

#190 Aug 2, 2011
Leslie wrote:
same thoughts have went thru my head-I am a little weary to reply to e-mails I do not know. You have to understand, we don't want shingles but we also would rather not have our identies stolen or bank accounts emptied. Your heart may be in the right place, but society has taught us to be careful. Have you considered setting up your own website w/ information?
Hi Leslie, I have considered a website and I do have the backing of two medical professionals. I myself have written cook books for product manufacturers in the past including subjects on nutrion but I needed to know first that what I happened to stumble upon last year and the effect it has had on me after 20 years of suffering shingles will work for others also.

I am sorry for all of you that were upset by my thread and a bit warey of me but in my niaevety and my quest to help I totally forgot about scammers. I don't want any money from anyone and the questions I ask don't even entail asking you your full name, address or anything. You could easily set up another email account with a nickname so I wouldn't know anything about you personally, I just need to know about certain aspects of your dietry lifestyle so that I can advise correctly.

The people on here that have been so poorly and desperate for help and have trusted me without even thinking about me being a scam (as I didn't think of myself as such) are really responding well.

I notice so many threaders on here constantly ask the question as to why nobody from this Topix site actually give them any answers but this is just a continuous forum for people to speak to each other, the site is not designed to offer any professionals to actually advise. I therefore felt I could be the one to help, how silly of me to forget that even the most trusted are not trusted anymore and I feel that is the sad world we live in and yet most of us have trusted a scammer, including myself at some time in our lives!!!!(And by the way, that was an upstanding professional company who I thought had credibility - namely my bank!!)

I apologise to everyone for my niaeve approach and to those of you who have contacted me, I would to thanks you and to keep doing what you are doing and if you still want to stay in touch I will continue to help and lets hope we get some results.

To those of you that don't want to contact me I respect that and I hope you find a way forward with this horrid virus someday. It has only taken me over 20 years to feel as good as I do today.

Kind ones

Jacky (This is my real name and not a nickname)
terry

New Hope, PA

#191 Aug 2, 2011
I too have beed diagnosed with shingles three times in the past three months. It appears on my forehead in a line down to my neck -same place each time. Went to dermatologist yesterday - it is not shingles but it is herpes. How I got thism I do not know but that is what it is.
Ronna

United States

#192 Aug 2, 2011
I want to thank Jacky from England for her understanding and the time she takes for the rest of us. Guys...we are all in the same boat. BE NICE! This is the only place where people understand what it like to have 14 outbreaks and have pain in 14 places at once. So please, let's just be supportive and share what we learn.

Since: Jul 11

Nottingham, UK

#193 Aug 3, 2011
Ronna wrote:
I want to thank Jacky from England for her understanding and the time she takes for the rest of us. Guys...we are all in the same boat. BE NICE! This is the only place where people understand what it like to have 14 outbreaks and have pain in 14 places at once. So please, let's just be supportive and share what we learn.
Thank you for that Ronna I am glad to hear you have been feeling better recently. As promised I will get that stuff across to you sometime this week when I have got "working for a living" out of the way and hopefully together we can work on some more progression.

Hands across the sea and all that!!

Kind ones

Jacky

Since: Jul 11

Nottingham, UK

#194 Aug 3, 2011
terry wrote:
I too have beed diagnosed with shingles three times in the past three months. It appears on my forehead in a line down to my neck -same place each time. Went to dermatologist yesterday - it is not shingles but it is herpes. How I got thism I do not know but that is what it is.
Hi Terry

If it is Herpes (and trust me we all get some form of it at least once in our lives so its not all down to the dreaded as one may believe) please consider taking Super Lysine in liquid form, it's not cheap but well worth the investment. Also take Zinc but make sure that you buy zinc tablets balanced with copper for best absorption. If you can't find this, check with the herbal specialist at the store. The zinc needs to be balanced with something you shouldn't take pure Zinc.
Don't forget I am not a doctor so please always check first that you are ok to take these as even herbals can cause problems with any other medication you may be taking.

Also try to get plenty of vitamin c into your diet whilst taking the Zinc. Together they work wonders!!

I am on here most time and would love to know if this helps so please keep in touch and let me know either through this site or check back for my email if you feel you would like more personal help getting through this.

kind ones

Jacky
Leslie Pinion

Gainesville, GA

#195 Aug 3, 2011
I have been looking into a few things on the internet. I am looking at refined sugars-and the effects is has on our health. I have been talking with my sister, because my brother-in-law is having unexplained health issues and they are traveling all over the US to get answers. For those interested, try the search I did last night, I just googled "refined sugars and the effect on your health". I was amazed-if you are not that much of a health freak, you may not realize that refined sugars are in everything-basically, it mother nature didn't give it to you-it probably has refined sugars in it (not just sweet foods). I, both for my self and for my family, am going to start weaning off of so much refined sugars and get back to natural/whole foods. I speculate that our dependence has lead to many of our health issues-due to the effects it has on our immune system-just for starters. We all know that shingles work on a weakened immune system. I also know someone struggling w/ cancer-and was amazed at how sugars affect the ability for cancer to speed up/spread.
Dave

Princeton, Canada

#196 Aug 4, 2011
Hello everyone. It's great to know I'm not alone! At the same time I feel badly that all of you have/are experiencing such discomfort! I had shingles about 6/7 years ago, it ran its course and that was that - or so I thought. For the last 2 years I've been experiencing a lot of stress - I lost my job, I found another job with an 1.5 hr communte each way, I have a young family, finances are suffering, etc. I've always had a fairly positive attitude and I thought I was dealy with everything okay, but then I got what I thought was a sinus infection in Nov 09. It went away over Christmas but then the symptoms returned soon after. Ever since then hardly a day has gone by when I've felt healthy. My symptoms have always been grinding fatigue, post nasal drip/congestion, sore neck, facial/scalp discomfort, and a sensation like my head is swimming.
I've considered everything from sinus infection to diet issues, to sugar imbalances but nothing clicked until I remembered my shingles. I went online and found that the Trigeminal nerve in the head is linked to Shingles lesions on the scalp and face. As I pondered this idea more I remembered that I've had small lesions on my scalp that I assumed was some kind of skin condition. Reading a past post about blisters in the mouth reminded me that recently I've had small blisters in the back of my mouth and a really sore thoat. For those of you who have symptoms involving your face or mouth, it might be helpful to know that, based on my research, the Trigeminal nerve is responsible for all facial sensations, including the mouth. Since this is also the nerve associated with Shingles on the head and face fit may explain some of your symptoms.
Hope this is helpful. Unfortunatley I haven't found any treatments that work yet. But I haven't given up hope. Hang in there everyone!
Anita

Albuquerque, NM

#197 Aug 5, 2011
I have also suffered many, many bouts of shingles on my left buttock. I suffered a horrific back injury that caused nerve damage 7 years ago and shortly thereafter the first shingles attack.
I also believe that diet affects me, any corn, nuts, chocolate or alcohol consumption can spur a attack. I find the pain meds are too much for me and just stick to Lysine and Acyclovir works if I take it at first tingle.
Layla

Mesa, AZ

#198 Aug 6, 2011
Thank you all for putting my mind to ease a little bit about the reoccurring shingles. I first broke out in a rash when I was about 7 months pregnant with my twins girls. I was also going through a whole lot of stress at the time, which I think triggered it. I was 24 yrs old at the time. I'm 36 now. It's been 11 years now, and I still continue to get the rashes. Not as frequent as I did in the first few years, but I still get the outbreaks when I'm under too much stress, or overly tired. Anyway, for years I didn't know what the rashes were. I was too embarrassed to go to the doctor because I would get the rashes on either one or both of my butt cheecks! I am a very modest person and this was hell for me. I finally got sick of the wondering what these rashes were. I was so scared that I had contrated some horrible disease. I finally went into the doctor during one of my outbreaks, and was told it was shingles. I was offered something for the pain, but refused. I usually just tough it out. After being diagnosed I started to read as much literature about shingles as I could, and there wasn't much. Everything I read said that shingles rarely re-occurred. This scared the hell out of me, and made me wonder why mine was re-occurring. So after reading all your comments I feel so much better. Now I know I'm not the only one suffering from this.
Samuleta

Fleet, UK

#199 Aug 12, 2011
Interesting thread...I have been getting the same thing for the last 5 years (just turned 40)- which I've only just realised might be recurring shingles - and this realisation only after my 12 year old neice got shingles recently and my sister noted the similarity in the rashes. I get these outbreaks in three different places on my body: left lower arm, left inner thigh and on my buttocks (moves around a bit mostly near the top). Not all at the same time though! I haven't noted any symptoms of depression, etc, as some of you have but I have just realised something in relation to periods. I have recently come off the pill in order to try for a second baby. The pill was one that I took continuously - no break for withdrawal bleed - and I can honestly say that I don't think I suffered from an outbreak once in the months that I took that pill but in about two days of coming off it I had an outbreak on my leg, then as that was fading, one on my arm, and now as that is fading another one on my leg. I am not particularly stressed right now, although I can say that the first three weeks with my newborn baby (two years ago) was probably the worst time I've ever had with non-stop outbreaks and probably one of the most stressful times of my life as well... Anyway I think maybe the pill/menstrual cycle thing may be relevant...
KLG

Burbank, CA

#200 Aug 15, 2011
Hi All,
I will be turning 21 this month and have had 3 shingle outbreaks (or what I believe to be shingle outbreaks) within the past 4 months. During my first outbreak, which was back in May, I was diagnosed with shingles and since then have not been tested for shingles again. The doctors (I have been to 4 including an infectious disease dr) just take my word for it and prescribe me antibiotics.
I am relieved and saddened to see that there are so many people experiencing very similar symptoms. Relieved that I am not "crazy" like so many seem to think, but saddened that this is so common and thus far seemingly untreatable.
My outbreaks have occured in the same place all 3 times (left buttock) but this time it is slightly higher on my body. Each time I have had an outbreak I notice abnormal fatigue at least a few days prior to the outbreak and some itching/shooting pain where the lesions end up popping up. I've also noticed that each time I have been working out more than usual right before an outbreak. So I suppose I could be overexerting myself, but I don't want to stop working out and it's hard for me to believe exercise could be causing my body harm. Also, I am a very high stress person and I experienced the most stress I ever have during my first episode.
Although I am so young I will be receiving the vaccination (intended for people over 60yrs) in a couple of days. I'm praying that this vaccination works because I do not want to accept these reoccuring outbreaks as a part of my life.
I will keep everyone posted on how the vaccine goes. I'm hoping this will be the answer we need to keep us from having to deal with this annoying/serious problem.
Momanet

Hayesville, NC

#201 Aug 16, 2011
Have had shingles off and on for over 10 yrs. I was given the zotivax shot this past winter. It helps with the PHN and has slowed the outbreaks. Still have outbreaks but they are farther apart and not as sever as before.

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