Has anyone been to an infectious disease doctor for chronic or recurrent shingles ?

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hi all,

i am 39 years old and have been struggling with shingles for the last 5 months . it started at 4 months post partum with a fairly standard case and then came back 2 weeks after it cleared. ever since, i have basically been on valcyclovir or it comes back every couple of weeks. even on the medication i just dont feel like myself-i always feel a little ill, have the sensation that my ear is full, numbess on my face even though the shingles were on my chest and i have burning feeling on my back and spine. my doctor has run a million tests and cant find anything wrong to explain it. i am seeing an infectious disease doc next month and hoping for answers but starting to just feel anxiety that i will never feel back to normal. does anyone else have chronic or recurring shingles without an underlying condition to explain it? most doctors have told me it is just really weird and shouldnt happen

thanks for your input

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  • Posted

    Hi Mary,

    I have had Herpes Zoster-Shingles in my right ear, throat, and mouth every three weeks for the past 23 years and twice in my right eye.

    I have autoimmune diseases, but testing did not always indicate autoimmune disease 23 or even 10 years ago, although the signs and symptoms were there.

    I also had breast cancer, caught early, excellent prognosis, no spread to lymph nodes.

    I saw an infectious disease specialist probably 15 years ago. He was a waste my time.

    I am currently seeing an infectious disease specialist who is excellent.

    You didn't mention your location, which unfortunately matters. If you are in the States, get the Shingrex Vaccine. You are eligible, with a note from the doctor. You might have to pay a CoPay of$ 150.00, but it will decrease the neuropathic pain you are having. It is two injections spaced two months apart.

    The vaccine often causes moderate to moderately severe symptoms of body aches and pains, pain at injection site, headache, mild fever, chills and sweating, for approximately 3-5 days. Having Shingles is far worse.

    Google Hi Lysine Low Arginine diet and Herpes diet.

    Herpes Zoster-Shingles causes many symptoms besides a pain and rash, especially long-term. It causes anxiety and depression, fatigue and exhaustion, numbness and tingling, as it affects your entire body.

    I found that Famciclovir a better antiviral than Valcyclovir, as the Herpes virus has developed resistance to Valcyclovir in some people, and it certainly didn't work for me. Famciclovir is a smaller tablet than Valciclovir, and therefore easier to swallow! (Of course, zoster constricts my throat).

    Do you have IBD, IBS, autoimmune disease, asthma, depression, kidney disease, take corticosteroids? BTW, I also have kidney disease stage 3. Years ago, no one knew I was immunocompromised. I certainly had asthma and was under a huge amount of stress.

    If you can, please try to rest and sleep. You might try asking for Cymbalta , a SNRI antidepressant, as it helps with pain, depression, and anxiety.

    I take Venlafaxine, a SNRI, Topamax, an anticonvulsant, to deal with the neuropathic pain.

    The important thing is to have excellent and compassionate physicians who understand Herpes Zoster-Shingles. Most physicians are abysmally ignorant.

    If you have any questions, please let me know. I have been through this disease, backwards and forwards...

    I am a Nurse Practitioner in the States.

    Shingrex is not available in the UK until age 70, unfortunately.

    Best Wishes

    Merry Juliana

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    • Posted

      Greetings,

      I too suffer from recurrent ZOSTER. I have had it for over 2 years. I have been to 2 ID specialists, both a waste of time. I have been to Boston, to see a Neurovirologist, he thought it was atypical ZOSTER, advised me to stop my famvir three times daily to see what happens. It came back. I got Shingrix, and although I know it cant give you Zoster, my shingles got worse and spread to multiple dermatomes. I have no known underlying immune dysfunction. Famvir at least makes life bearable at the moment, along with lyrica and celebrex. I am a family physician , 51 years old. I am stunned that many specialists dont believe that recurrent ZOSTER exists. I have a few patients in my practice that have it. I will keep you all in my prayers as this disease is awful.

      GL

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    • Posted

      Hi GL!

      Sorry you are suffering from this scourge.

      I have had Ramsay Hunt every three weeks rx 23 years R ear, but also affected my swallowing, then spread to my entire R scalp. I am immunocompromised, but it was not apparent the first 15 years to physicians, although I now have been diagnosed with SLE.

      Famvir, I agree, is a life saver. I found that maintenance dosing never prevented recurrent Herpes Zoster-Shingles for me.

      Please Google High Lysine Low Arginine Herpes Diet. Apparently, the amino acid Lysine helps prevent Herpes and arginine triggers zoster. I am not a health food nut. It is the ratio of Lysine to Arginine. Chocolate and Legumes and nuts are huge triggers for zoster. When I would eat nuts, my zoster would be even more frequent and severe. A lightbulb finally went off. Nuts are high in Lysine, and of course, I would never eat one nut. I dislike chocolate.

      Shingrex attenuated the Zoster, but I certainly still get it every three weeks.

      I found that for my scalp vesicles, applying Bactine (lidocaine), then Flonase spray, helped markedly with the severe burning. As they are clear solutions, and sterile, I never had an issue with infection. I find when I have milder episodes, I pay for it with a horrendous excruciating episode.

      You are correct regarding certain clinicians being abysmally ignorant re: Herpes Zoster-Shingles.

      I advise patients wearing cotton during an episode.

      I am a FNP in the States.

      Best Regards,

      Merry Juliana

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    • Posted

      wow thank you for these replies -they are simultaneously disheartening and comforting . GERALD, i am actually heading to BOSTON to see an ID DOC. hoping its not a total waste of time but also being realistic. how did the doc explain what atypical zoster is? would u mind if i sent you a private message with some follow up questions? i really appreciate it!

      thanks!

      mary

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    • Posted

      Thank you, both. I think just knowing there are people like you all out there who understand, helps quite a bit. Please let me know how it goes with the ID doc in Boston.

      Be well,

      Gerald

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  • Posted

    Hi Mary. Shingles recurring is becoming the norm but it is shocking how little the doctors actually know about treating shingles. As for the Infectious Disease doctor, i had no luck with them either. One ID doctor even diagnosed me with PTSD from my breast cancer. Within hours of HIS diagnosis, i was hospitalized with what would days later be diagnosed correctly as Ophthalmic Shingles (shingles in the eye). I use my family doctor now and have found better treatment with having a more personal connection to my physician treating me. Dealing with specialists only delayed my relief and "see you again in a month" is an insult to anyone with shingles.

    The best advice i can give you is be kind to yourself. You will not be able to power through shingles, like other illnesses. Shingles will only get worse if you push yourself. Be kind with your wound care. Your shingles are coming from an infected nerve and the more it is aggravated, the larger it can get. Because it is a nerve, even stimulation from your clothing on that area can make it much worse. Wear loose clothing and use the topical lidocaine often. If it hurts, don't do it. Use ice packs to ease the burning, itching and shocks. The flu-like symptoms you are having could be caused by the antiviral you are taking but could also be the shingles virus still being active in your body. I know you are stressed and afraid this will be a life sentence for you. We have all felt that same year. But....it might not and you have to keep that positive in your head. Anxiety will bring on a shingles outbreak faster than anything else, so think C A L M .....

    As for causes, there are several things, other than stress that can bring on shingles. Some foods, as described by Merry Juliana. Also infections like a UTI can trigger it. Even a woman's cycle can be a trigger because that's when our immune system becomes vulnerable.

    Your outbreaks may or may not continue but if they do, treat EVERY outbreak with urgency. The shorter the episode, the less likely the damage it can leave behind. This is not to scare you but to make you aware. There are many wonderful and wise people you will find on this site, who truly understand what you are feeling and they care. You are NOT alone, friend.

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