Recurring Herpes Zoster... Shingles!

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Hi guys, for the last 5 years or so I've been having shingles/ herpes zoster outbreaks on my upper buttock of my left hand side approx every 3months sometimes more. I want to list my symptoms to be sure it is Shingles to be honest. Ive been in and out of NHS (UK) hospitals getting tested and prescribed Acyclovir 800mg which I used to take daily but found my outbreaks got worse when taken! It reccurs in the same area every time and has now causing some quite obvious scarring; I'm black British (Caribbean) so the scarring is darker not paler in my case. When i have an outbreak my left leg feels weak, as though somebody has a damp flannel lightly dragging across the surface of my skin with a burning/aching sensation under the skin in my joints and a very painful left groin. Sometimes the outbreak is smaller and easy to manage but this time (on day 2 of my current outbreak) the rash is rather large and my left groin gland is very swollen and painful. The rash is extremley itchy non stop and mildly burns when scratched or rubbed. Over the years my left leg feels as though I'm having more burning sensations and dull localised aches more often, is this PHN I don't know?! For the last 2 months ive had a dull ache in the left side of my groin that comes in short waves daily, the sensation of a weak ankle keeps happening but in my left shin and thigh and sometimes my left arm and wrist. The fatigue is sometimes very manageable but often very dominant (like this time!) I can sleep for hours and still feel tired, my body feels like lead and my left side aches, getting dizzy spells when standing up and moving around, occasionally short for breath too. Literally feels like waking up in the middle of the night and trying to run a marathon, that feeling of heaviness! Sometimes I'm very irritable and snappy and other times my mood is fine. My diet could be better so i take vitanin D, B12, Multivits, Biotin 1000mcg, ferobolin and vit C to help. I don't think it's related to shingles but I can't tolerate too much Gluten or dairy, my stomach bloats very quickly and I become constipated quite often so my diet suffers as I avoid meals and prefer snacks in fear of painful bloating (I will make changes on my diet!) this is probably un-related but I thought I may as well list it. I rarely get headaches which ive read people getting and I sleep for about 6 to 7 hours a night, I'm am quite active and exercise for about 4_5 hours per week on average. I've been to various Dr's and Hospitals but to no avail apart from Acyclovir which I found makes my outbreaks worse as I said, is there anybody who has found any holistic or alternative therapies thar work for them, preferably in the UK? Could anyone inform me if the sensations and weaknesses I feel in my left side is PHN by any chance, I'm so keen to get this out of my system but I doubt it's possible! Any help or tips are welcome people smile

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  • Posted

    Hi Nat,

    First, I am sorry for the pain and itching and suffering.

    I tried posting much earlier today, but my phone acted up and lost my message.

    It certainly sounds as if it could be Post Herpetic Neuralgia PHN that you are experiencing currently.

    As you don't tolerate gluten, perhaps you should get your IgA level checked to see if it is elevated. If it is, go gluten free and see if the rashes and itching disappear.

    Another suggestion is to Google the Lysine-Arginine diet and Herpes Zoster-Shingles connection. Eating foods high in Lysine and low in Arginine help prevent episodes of Herpes Zoster-Shingles, the episodes are less painful, and are of shorter duration. I love peanuts and macadamias and cashews, and didn't realize that they were contributing to more painful and frequent episodes. Many individuals take Lysine supplements, but please know that they can cause kidney stones and disease, liver problems, and heart problems.

    The symptoms you describe are similar to many people on this site. Herpes Zoster-Shingles is caused by a DNA virus that attacks your nervous system, but also circulates in your body causing symptoms such as headache, fever, chills and sweating, aches and pains, fatigue and exhaustion, malaise, and swollen lymph nodes. The reduced sensation you feel in your leg can also be caused by the Herpes Zoster-Shingles virus.

    You didn't mention your age and whether you have any other conditions that might predispose you to having frequent episodes such as being immunocompromised with SLE, RA, ITP, Psoriasis, Sjogrens Syndrome, being on corticosteroids, or have cancer or IBD.

    I have Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty years and twice in my right eye. I am a Nurse Practitioner in the States.

    Best wishes

    Merry Juliana

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    • Posted

      Hey Juliana

      Hope you are well?

      Thank you for your reply, it's really helpful! I wasn't aware of the dietary requirements that I could be sticking to, I will give them a go and try and the gluten test from the doctors over here.

      I'm 26 (27 at the end of january) and have no other health issues that I am aware of, apart from the digestive problems that I mentioned above. I had scarlet fever as a child but that's all I can think of

      Regards,

      Natalya

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    • Posted

      Hi Natalya,

      I adore your name! Which country from the Caribbean are your ancestors from?...

      Your mood swings could be from the hormonal variations in your menstrual cycle. I know I suffered from severe irritability and depression when I was your age. Please know that I truly suffered from this and there are medications that can help.

      Also, when am getting the Herpes Zoster-Shingles, prior to the pain/rash, I become more irritable and have insomnia. The Central Nervous System is stimulated or irritated by the DNA virus.

      If you could eat more vegetables, fruits, and protein, your need for supplemental vitamins would cease. As you sound lactose intolerant, there are substitutes for milk that taste good, these days.

      The vitamins themselves can cause digestive problems. If you take a multi vitamin daily, that is sufficient. Your body excretes the excess. I eat a balanced diet, and when my vitamin levels were tested (as I had a second stroke) my vitamin levels were high normal.

      Best wishes and warmest regards

      Merry Juliana

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    • Posted

      Hey Juliana

      Thank you! My mum is mixed (Panama, Barbados, Scottish and English) and my dad is from Grenada smile They just liked the name when the Gymnastics was on TV and gave me it! 

      As for the mood swings and my cycle- i have the contraceptive implant so i havent had periods since May. The doctor i saw for a few years who specialised in diseases said that my shingles could be related to my cycle but i dont think this is the case. But yes, i already stick to lactose free milk and almond milk most days to avoid bloating. 

      I might cut back on some of the multi vits and force myself to eat more fruit and veg though, thank you for your tips- so very helpful, more than the doctors here know! I have an appointment on Thursday this week so I will ask about the Gluten testing and the Lysine-Arginine diet too

      thanks again, 

      Natalya x

       

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