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

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

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.

Hi All!

I'm 49. I've had shingles 7 times in 13 months. Each time on my face. This time it's on both sides. Going to an ID shortly. It started when I got my 1st Covid vaccination. Got shingles after all 3 vaccinations, got Covid & shingles at the same time and now shingles seems to flare up every 2 weeks. I'm struggling everyday at work to get through the day as I have low energy and just don't feel right. So happy to have found this as I know I'm not only one other. Thanks everyone for sharing! Always open for suggestions!

Shelley