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Shingles over and over again need advice re: causes please

Posted , 32 users are following.

lucyandyoshi
lucyandyoshi

Hi There, 

Before I start I will say I have seen the extensive discussions about reoccuring shingles on this site - and have read them (many times). 

I am a 36 year old female, otherwise healthy apart from this shingles that haunts my life. First bout was in 2014 after a traumatic experience in my then stressful job. Since then I have left my career (I was a teacher) and have started on my own path as a self employed person. I chose this to make sure I wasn't putting myself under undue pressures and can choose my own schedule. 

Long story short 4 weeks ago I had the tell tale exhaustion, short tempered, sleep the clock around groggy feeling, terrible acid stomach and low and behold about 10 days later the rash appeared, always in the same place on my left ribs over my stomach. 

This is the 5th time I have had an outbreak since 2014. My GP (I am in the UK) has usually been dismissive and tells me as the rash has come out there is nothing that can be done and to "ride the storm", well this time I am absolutely sick of riding the storm. It shouldn't be happy to me and I am worried sick about WHY this keeps happening. I explained this to the GP and watched her GOOGLE reoccuring shingles in front of me as she said she really was clueless in a woman my age. The usual came up and she sent me for a HIV test, which I was flabbergasted by as I have been married for 15 years. I have also been tested for "everything" (whatever that is on the NHS).

Cutting a long story short I was wondering if anyone here had actually ever got to the bottom about WHY This happens to them?. I am now at the end of the rash, covered in cold sores (they also plague me) and my family call me "Herpes woman" which is charming ... 

What causes this? Do I need to pressure my GP to dig deeper or is it "one of those things". Immune defencincies keep coming up but never gets more than a fleeting mention.

HELP (thank you ... also laughing how shingles has a little bug next to it on the avatar - it feels like little pinchy ants running along my trunk!)

6 likes, 87 replies

87 Replies

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  • Goodwater_Betty
    Goodwater_Betty lucyandyoshi

    Posted

    I think you need to find a new doctor!  Merry Juliana is our site's expert on recurring episodes so I hope she will chime in soon and give you some professional advice since she's also a nurse.

    • donna07055
      donna07055 Goodwater_Betty

      Posted

      Great news, I am a 52 year old woman who was plagued with shingles from age 11 to 27 and I found something that stops an outbreak in a Natural Remedy book in 1994!!! I have used it ever since and it works!!!! When you feel the first tingle take 2000 mg of L-lysine every 4 hours until the pain stops. It will freeze the herpes in that stage no pain, no blister, nothing GONE!!! L-lysine works for cold sores, chicken pocks, STD herpes, and most notably for me Shingles. I keep a bottle at work and a few pills in my purse. It is safe enough to take if you are pregnant (that was how I found it) I was pregnant and could not take my Dr prescription. So, I went to a health food store and found my miracle. Over the years I have told everyone and anyone who has a cold sore, shingles, STD herpes I even stop people I see and tell them. 100% reported that it works!!! L-LYSINE is an OTC natural amino acid that you can get at any drugstore in the vitamin aisle. It is a natural amino acid, fat burner, mood enhancer etc. Healthy to take. Do not take it as a maintenance, only take it when you feel the tingle. The natural remedy book also suggested cutting back on peanuts, coffe, and brown legumes which may counter the L-lysine, but only for the day because IT IS HEALED IN ONE DAY!!!.
    • debbie92869
      debbie92869 donna07055

      Posted

      Hi Donna,

      My mother has had shingles continuously for the past 2 years, will the L-Lysine help at this point since she is already broke out?

  • Shoe_Lady
    Shoe_Lady lucyandyoshi

    Posted

    Oh dear!!! I have been searching for this answer for the last 3 years! I'm 45 and am also health(by Gods grace) and I get them recurring also. So frustrating!! I do have the answers, but I have had the most success with fending them off with focusing on my gut health. Diet, diet, diet!!!!! I am have not rid myself of the symptoms completely, but have drastically changed the severity, frequency, and duration. It's really helpful to start with a fruits and vegetable cleanse for as long as you can (no more than 28 days) and then start adding in the correct foods from there. I wish I had more answers, but this is the best I can do. Merry is a NP and she may respond with a better medical explanation. She is so knowledgeable, as she has been suffering with this for so long.

    • Shoe_Lady
      Shoe_Lady

      Posted

      Correction: Do NOT have the answers😂

    • ellen31590
      ellen31590 Shoe_Lady

      Posted

      Hello Shoe Lady,

      I read your note on gut health. I do believe it’s the answer. I’ve had shingles for 10 months. They almost killed me as I was just coming off chemo for breast cancer and got valley fever and shingles simultaneously.  Im on the mend and it was focusing on the lysine diet that helped. Specifically drinking pear juice. I felt relief almost immediately.  I’ve tried so many things, medical and alternative...colloidal silver,cbd,lysine tablets(which I don’t think absorbed as I didn’t have relief like eating a pear. ) I’m wondering if anyone has tried oil of oregano or grapefruit seed extract and had any positive results.

    • donna07055
      donna07055 Shoe_Lady

      Posted

      Great news, I am a 52 year old woman who was plagued with shingles from age 11 to 27 and I found something that stops an outbreak in a Natural Remedy book in 1994!!! I have used it ever since and it works!!!! When you feel the first tingle take 2000 mg of L-lysine every 4 hours until the pain stops. It will freeze the herpes in that stage no pain, no blister, nothing GONE!!! L-lysine works for cold sores, chicken pocks, STD herpes, and most notably for me Shingles. I keep a bottle at work and a few pills in my purse. It is safe enough to take if you are pregnant (that was how I found it) I was pregnant and could not take my Dr prescription. So, I went to a health food store and found my miracle. Over the years I have told everyone and anyone who has a cold sore, shingles, STD herpes I even stop people I see and tell them. 100% reported that it works!!! L-LYSINE is an OTC natural amino acid that you can get at any drugstore in the vitamin aisle. It is a natural amino acid, fat burner, mood enhancer etc. Healthy to take. Do not take it as a maintenance, only take it when you feel the tingle. The natural remedy book also suggested cutting back on peanuts, coffe, and brown legumes which may counter the L-lysine, but only for the day because IT IS HEALED IN ONE DAY!!!.
  • Merry19451
    Merry19451 lucyandyoshi

    Edited

    Hi Lucyandyoshi,

    I truly understand your frustration regarding the paucity of knowledge of Herpes Zoster-Shingles. I am a Nurse Practitioner in the US and have had Herpes Zoster-Shingles every three to five weeks in my right ear for the past twenty years and twice in my right eye. Yes, you did read that correctly.

    I assure you the individuals on this site know more about the pain, the disease process, the accompanying symptoms, the recurring episodes, the treatments, than most physicians.

    Certainly stress plays a role in undermining your immune system. Individuals who have autoimmune diseases such as SLE, ITP, Psoriasis, Sjogrens, RA, etc are more prone to Herpes Zoster-Shingles. Individuals with IBS, Crohns, UC, are also more prone to Herpes Zoster-Shingles. Those individuals on corticosteroids and immune modulating drugs are prone to Herpes Zoster-Shingles. Individuals with Cancer and HIV have an increased risk. As we age, the risk increases. Sometimes, it is not readily apparent why recurrent Herpes Zoster-Shingles occurs.

    I have ITP SLE Psoriasis, but wasn't diagnosed by a physician yet when I had my first few episodes? of Herpes Zoster-Shingles. I also have breast cancer (excellent prognosis). You must realize that by the time a breast cancer is detected, it has been growing in your body at least seven years.

    What I am saying is that they can do for you

    1. Mammography Screening for breast cancer

    2. Colonoscopy for colon cancer

    3. CBC with Differential for bone marrow cancers ie

    Leukemias?, Plasma cell-Multiple myeloma

    4. Ultrasound ovarian cancer

    It will most likely come up negative as the underlying cause

    such as an autoimmune disease is not obvious yet.

    Or it is just stress.

    Here are two positive actions to take. Insist that your physician give you a supply of antivirals, preferably Famvir-Famciclovir. This medicine is more efficacious than Acyclovir and easier to swallow than Valcyclovir. As soon as the symptoms begin, start taking the Antivirals. It stops the replication of the virus?. The episode will be shorter and less painful.

    The other way to improve your quality of life is to Google Lysine Arginine diet regarding Herpes Zoster-Shingles. A diet high in Lysine, low in Arginine will help reduce the number of episodes of Herpes Zoster-Shingles. It will also reduce the intensity of the pain when you have an episode. I used to eat legumes which are high in Arginine. Michelle, a wonderful lady on this site informed us of this diet, and a lightbulb went off in my brain. The Cashews and peanuts were increasing my number and intensity of episodes. Since I have quit, the number of episodes have decreased.

    Also, try to decrease the amount of stress in your life. It is easier said than done. I know that.

    Best wishes to you.

    Merry Juliana

    • Merry19451
      Merry19451

      Posted

      The bottom line is you probably have no known reason for recurrent Herpes Zoster-Shingles. If you have been healthy, have no symptoms of cancers, leukemias, autoimmune diseases, don't worry about it. Go ahead and live your life the best you can. Just make certain you have a great Physician? who will give you Antivirals ahead so that when symptoms start, you can immediately treat the Herpes Zoster-Shingles and continue living your life.

      There is a new vaccine Shingrex by Glaxo-Smith-Kline that was submitted to the FDA in October 2016 and the UK's drug regulatory agency November 2016. It is 93-97% efficacious compared to the old Zostavax, which is 37-53% efficacious, dwindling with age. It takes 6-18 months for approval.

      Best wishes

      Merry Juliana

    • Ochio1234
      Ochio1234 Merry19451

      Posted

      Greetings. I am in Fla. US. I have a Doc who gives me antivirals but I am on a very large dose now and have been for a year. The Shingles episode still remains. I have had recurrent Shingles on crown of my head under my hair ... BOTH SIDES  of my body. My first was 12 years ago and the outbreak has recurred numerous times taking forever to heal. The Doc and I now believe it is chronic Shingles with Post herpetic neuralgia. Have been on massive amounts of prescription opiate pain meds. I wish there was a different antiviral med because none have been very effective. I’ve been trying legal medical marij. fot the past year and no miraculous results. Breakouts occur in the same place every time ... like a pattern. I am VERY healthy ... have been checked for all contributing causes but none revealed in biopsy. Organic foods; no smoking, drinking, etc.. I am very afraid I will live with this my whole life. A Pain Management Doc gave me an epidural which released the pain but she had to take it to C1 C2 which is dangerous ... but for others with lasting Shingles in lower areas .., this could be an option. With these sores on my head ongoing, I am afraid of infection. Should I keep them covered with antibiotic ointment? I have been to so many Drs. and have tried every natural remedy I’ve seen... Interesting that my ancestors had severe Shingles but nothing like mine  I have an appt. with an infectious disease Doc in Nov. and a Dermatologist in Feb.. I’ll report back once I have new info.

      Best wishes to all of us dealing with this mysterious condition.

    • Merry19451
      Merry19451 Ochio1234

      Posted

      Hi Ochio,

      First, I am so sorry you are going through this. I literally know how you feel.

      I am glad you are following a healthy lifestyle. That helps tremendously.

      1. My first recommendation is to Google Herpes Zoster-Shingles and High Lysine low Arginine diet. I have followed this strictly now for months and have not had a Herpes Zoster-Shingles episode for at least 6-8 months. This is miraculous for me, as before I had episodes in my right ear every 3-5 weeks for the past twenty-one years and twice in my right eye.

      You must stick with the diet for a couple of months before your body detoxifies itself of the excessive amino acid, Arginine.

      I have eaten the Mediterranean diet for a couple of decades, but included nuts and legumes to increase the Omega 3+6 FFA. Unbeknownst to me, nuts and legumes are high in Arginine and we're triggering the Shingles. Of course, if you eat nuts, you cannot eat just one, btw, LOL...

      2. I am on the anticonvulsant Topiramate, which decreases the intensity of neuropathic pain of the Herpes Zoster-Shingles. I still need Oxycodone when I have Herpes Zoster-Shingles, but the Topiramate does help reduce the amount I need. Physicians now use Gabapentin or Pregabalin, both which are approved for PHN.

      3. I would ask about Lidocaine patches, which are by prescription. This would work only if your hair is short. You could also buy Solarcaine with Aloe or Bactine to apply topically to the area. They both contain Lidocaine which numbs the nerve endings. I use Auroguard, an ear drop which contains Benzocaine.

      Using the three medications together work synergistically at smaller doses.

      While the Physicians initially thought I was healthy 21 years ago, I had autoimmune diseases that I am certain helped precipitate the Herpes Zoster-Shingles. I also have breast Cancer(Excellent Prognosis.) By the time a breast tumor is discovered, it has already been in the body at least 7 years.

      4. Please consider getting vthe new and improved Shringrix vaccine by Glaxo-Smith-Kline. It has an efficacy of over 90 %, as opposed to the Zostavax, which had an waning efficacy of 53-37% as one aged. Shringrix should be available in the US in 2018.

      May I ask your age? I am 65 years. I am a Nurse Practitioner.

      Best Wishes

      Merry Juliana

    • Ochio1234
      Ochio1234 Merry19451

      Posted

      I am 66 years old and crazy healthy with great genetics and longevity in my family. 2 Masters ... 1 in Counseling and one in Social Work but had to retire early. I had the side effect of numbness of mouth for Gabapentin and Lyrica. The Pain Management Doc prescribed seizure med (they are fascinating as they overlap into treatment for mental health conditions and other things) ... Zonisamide. I haven’t given it a good trial yet. My psychiatrist (I have anxiety disorders since all this) changed my Prozac antidepressant to Cymbalta as Cymbalta has pain reducing properties.

      I’ve tried Lysine but not the low Arginine diet. I’ll have to review it again. Eating organic with no red meat or pork or junk food  limits what I can eat.

      I have used so much Lidocane it’s ridiculous. My hair isn’t super short (or people would see the disfiguring rash.

      Do you have an opinion about the huge amount of Valtrex I’m taking? I just had labs and everything is always great ... except that I am in misery.

      Wishing you all the best.

      Nancy

    • Ochio1234
      Ochio1234

      Posted

      I have become almost agoraphobic. Stress has taken it’s toll. And now I can’t handle any stressors on top of pain and worry. Sad that my best friends all seem to be on Facebook now.
    • Merry19451
      Merry19451 Ochio1234

      Posted

      Dear Nancy,

      Chronic Pain does that, and having dealt with severe neuropathic pain emanating from my neck, my back, and peripheral neuropathy, I feel that the pain on/in your head is so difficult as you can't dissociate or separate the pain, at all. The Opioids are also depressing and change your outlook on life.

      Do you have photophobia, as well? I get photophobia with my episodes, which means sunlight makes things far worse. Living in Florida would make you a hermit!

      Have you received counseling, re: this?

      Are you able to do anything for pleasure? Read? Listen to favorite music? See any friends? Family? Practice some sort of self-care?

      Merry Juliana

    • Merry19451
      Merry19451 Ochio1234

      Posted

      Nancy,

      Also, as you are a high achiever who worked hard in life, or two Masters, I know...an assumption here, it is difficult to be in retirement. Your identity changes, your routine changes... and if you are not in physical contact with people, you definitely get angsty and anxious. We are social creatures...this is not news to you...I have had to force myself to work/ socialize, even when I had/have severe pain. It has been my emotional salvation. I did have surgeries for the neck and back, BTW. I am able to walk without a walker and am almost pain free in my neck and back now. And I am much better due to the diet. I did receive cognitive therapy unrelated to the Herpes Zoster-Shingles, for Major Depression and PTSD. I have used what I learned in therapy for dealing with chronic disease. I did get Occupational & Physical Therapy after my two strokes to maximize my potential...

      Best Wishes

      Merry Juliana

    • Ochio1234
      Ochio1234 Merry19451

      Posted

      I was warned to avoid sun and heat ... and I live in Fla.. I also lived in Phoenix quite a while. Plus tanning beds. All now thought to be contributing factors. It is very annoying to be in heat or sun and I can tell my head does’nt respond well to it. Ugh.
    • Ochio1234
      Ochio1234 Merry19451

      Posted

      When I hear of your combination of troubles, I feel so badly for you. I think of that quote “You never know how strong you are until that is your only option”. When the pain is severe, I can’t focus on reading or tv ... 
    • Merry19451
      Merry19451 Ochio1234

      Posted

      You are quite right when the pain is excruciating....there is no concentration possible! I know even a little sunlight is a trigger for Herpes Zoster-Shingles. I am fair skinned, and burn, freckle, and peel. Fortunately, I never tried to tan. That being said, I still got basal cell carcinoma below the swim suit line on my thorax. It is genetics.

      Best Wishes

    • MRSATD123
      MRSATD123 Merry19451

      Posted

      The shingles vaccine was approve in US in October 2017 has anyone tried it thus far and if so shat are your results?
    • donna07055
      donna07055 Merry19451

      Posted

      Great news, I am a 52 year old woman who was plagued with shingles from age 11 to 27 and I found something that stops an outbreak in a Natural Remedy book in 1994!!! I have used it ever since and it works!!!! When you feel the first tingle take 2000 mg of L-lysine every 4 hours until the pain stops. It will freeze the herpes in that stage no pain, no blister, nothing GONE!!! L-lysine works for cold sores, chicken pocks, STD herpes, and most notably for me Shingles. I keep a bottle at work and a few pills in my purse. It is safe enough to take if you are pregnant (that was how I found it) I was pregnant and could not take my Dr prescription. So, I went to a health food store and found my miracle. Over the years I have told everyone and anyone who has a cold sore, shingles, STD herpes I even stop people I see and tell them. 100% reported that it works!!! L-LYSINE is an OTC natural amino acid that you can get at any drugstore in the vitamin aisle. It is a natural amino acid, fat burner, mood enhancer etc. Healthy to take. Do not take it as a maintenance, only take it when you feel the tingle. The natural remedy book also suggested cutting back on peanuts, coffe, and brown legumes which may counter the L-lysine, but only for the day because IT IS HEALED IN ONE DAY!!!.
    • donna07055
      donna07055 Ochio1234

      Edited

      Great news, I am a 52 year old woman who was plagued with shingles from age 11 to 27 and I found something that stops an outbreak in a Natural Remedy book in 1994!!! I have used it ever since and it works!!!! When you feel the first tingle take 2000 mg of L-lysine every 4 hours until the pain stops. It will freeze the herpes in that stage no pain, no blister, nothing GONE!!! L-lysine works for cold sores, chicken pocks, STD herpes, and most notably for me Shingles. I keep a bottle at work and a few pills in my purse. It is safe enough to take if you are pregnant (that was how I found it) I was pregnant and could not take my Dr prescription. So, I went to a health food store and found my miracle. Over the years I have told everyone and anyone who has a cold sore, shingles, STD herpes I even stop people I see and tell them. 100% reported that it works!!! L-LYSINE is an OTC natural amino acid that you can get at any drugstore in the vitamin aisle. It is a natural amino acid, fat burner, mood enhancer etc. Healthy to take. Do not take it as a maintenance, only take it when you feel the tingle. The natural remedy book also suggested cutting back on peanuts, coffe, and brown legumes which may counter the L-lysine, but only for the day because IT IS HEALED IN ONE DAY!!!.
    • Guest
      Guest donna07055

      Posted

      hello

      i am to say that i am glad you are better with the lysine but it doesnt work for all! i have consume the lysine and saw no real results!

      will try the diet and as i am a healthy person and with anti virals will continue that some day i can say no more shingles it we t dormant for good! HOPING we all are cured

      myrna

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