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Stuck in a herpes zoster rut

Posted , 3 users are following.

kelli43130
kelli43130

I was diagnosed at a young age with herpes zoster. First diagnosed with shingles on my neck at age 20, and then zoster a few years later when I developed two outbreaks back to back on my back and down my leg(all right side of my body). I have seen many doctors as this was seen as rare for my age and was it possibly a symplex disease.  Blood test showed no symplex which makes all future and current docs uneasy. I feel like no matter who I see no one knows how to help. Currently I am prescribed Valtrex(now taken daily) and gabapentin. My nerve pain and outbreaks have  decreased immensely , going from monthly pain to maybe 5 times a year.  The problem now is when I get the initial nerve pain(rarely do I get an actual batch appear) it is increasingly becoming worse and worse pain! Like radiates up and down my leg and kidney area where I can barely walk and my entire leg jumps and vibrates. Does anyone have this as well and if so what the hell can I do? Any thoughts are welcomed! Being a shingles vet, I have tried a lot but always looking for advice 

1 like, 6 replies

6 Replies

  • Merry19451
    Merry19451 kelli43130

    Posted

    Hi Kelli,

    I also have had recurrent Herpes Zoster-Shingles, every 3-5 weeks for the past twenty-one years in my right ear and twice in my right eye. It was proved as Zoster, not Simplex, as I have no Simplex antibodies.

    I found Acyclovir & Valcyclovir did not help at all. They are the oldest two Antivirals.

    Taking the Antivirals daily did nothing to decrease the frequency of episodes.

    I found taking the Antivirals at the initial onset of symptoms worked better than the maintenance dose of Antivirals.

    Only Famciclovir helped to decrease the duration of episodes and intensity of pain.

    I am on Topiramate to decrease the Neuralgia, and the dosage was tapered up to help with the pain. Gabapentin's dosage also can be increased to help with the pain. Pregabalin might be more effective in managing your symptoms, or not.

    Other medications besides the anticonvulsants that are used are the SNRIs antidepressants, Cymbalta and Venlafaxine. Often one of these is combined with one of the anticonvulsants to act synergistically. I am on Venlafaxine and Topiramate, which both help.

    What specialists have you seen?

    Are your episodes restricted to one specific location?

    Do you have accompanying symptoms?

    Do you use topical Lidocaine, which can be quite helpful?

    Many of us find a high Lysine low Arginine diet helpful in decreasing the frequency of Herpes Zoster-Shingles episodes. Many take Lysine supplements. The diet has revolutionized my quality of life, as I have not had a terrible episode in about 8 months.

    If you have a lot of stress in your life, you need to decrease the stress.

    If you had your episodes in one specific dermatome, I would consider a nerve ablation by a pain specialist, usually a double boarded anesthesiologist or radiologist. Double check all references on these Physicians!

    I am a Nurse Practitioner in the States.

    I hope I have helped you. I know how difficult this disease is.

    Best Wishes

    Merry Juliana

    • kelli43130
      kelli43130 Merry19451

      Posted

      Thanks Merry for your response! I will be talking to my doc ASAP about some of those medications. When I have the initial pain I usually get sick as well. Bad headaches and sometimes a fever fatigue.  They had me on a PRN Norco for awhile but that barely touched my pain.  I saw a nerve speacialist once and he did nothing for me. 
  • Merry19451
    Merry19451 kelli43130

    Posted

    Norco is a poor medium relief analgesic, but doesn't touch the pain of Herpes Zoster-Shingles. I would request Oxycodone 10 mg tablets or Percocet 10/350 if you have no liver problems. It will take the edge off.

    I would definitely get the accompanying symptoms ie headache, fever, chills and sweating, aches and pains, swollen lymph nodes, fatigue and exhaustion, and malaise.

    I would also try Lidocaine patches by prescription or Solarcaine with Aloe, OTC which contains Lidocaine.

    Let me know how you make out!

    Best Wishes

    Merry Juliana

    • kelli43130
      kelli43130 Merry19451

      Posted

      Thank you Merry! What particular speacialist do you recommend seeing? Thanks for your time and wonderful advice
  • Merry19451
    Merry19451 kelli43130

    Posted

    Hi Kelli!

    The choices are a neurologist and

    pain management specialist. If you live near a university medical center, I would choose one from there rather than a community based physician.

    Frankly, I have had to figure out my own treatment over the years. I am aware of nerve ablation only because of other issues with my lumbar spine. I needed extensive lumbar surgery, instead.

    Best Wishes

    Merry Juliana

  • Shoe_Lady
    Shoe_Lady kelli43130

    Posted

    You can do a cleanse for 28 days of solely raw fruit and veggies. I only made it 10 days, then switched over to a diet that will take longer to completely eliminate the virus (one can only hope). So, the foods you have to have in your diet every day. Mangoes, pears, asparagus, wild blueberries, papayas, coconut, red apples, bananas, artichokes, avocado, red and green leafy lettuce, green beans, sweet potato, spinach. Eat a lot of these foods daily.

    The foods you CANNOT consume: corn, soy, canola oil, processed beet sugar, eggs, dairy, pork, farmed fish, gluten, msg, natural flavoring, artificial flavors, artificial sweetners, citric acid, 

    And avoid the amino acid L-carnitine , Argenine (nuts and chocolate)and whey protein at all costs. 

    I know this sounds crazy, but I have been doing it for almost a year and I have not felt this good in 3 years. I have shingles symptoms every month. Since on this diet my symptoms have lessened in frequency and intensity and I am not on any prescription meds! You should do the cleanse for as long as you can, then just start adding some cooked food. It is hard and boring, but effective so far. I also have made it more interesting by discovering some great recipes. Smoothies are the best way to start.

    Good luck

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