New here. 50F shingles 12/2018 and it's back....Can you get Shingrix during an outbreak/on Valtrex?

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I am 50 female and came down with Shingles for the first time in early 12/2018.

But backing up a year, I started with a toothache, a trigeminal neuralgia and eye pain that no one could sort out. Finally my ENT and Neuro said I probably had shingles without a rash affecting my trigeminal nerve. I do not get electric shocks, but I do get pain and dryness around the outside of my left eye, swelling, baggy eye, maybe a hint of a droop (maybe?) and horrible upper rear tooth pain on left with numbness down my cheek, to my lips and up to my eye. My dentist pulled tooth 15 and it has not helped. They thought it might be the tooth so I endured an extraction (3 roots) and dry sockets. Misery. 

Sooooo fast forward 6 months after the tooth pull and a year of testing for naught and I have a full blown shingles breakout on my upper torso. ENT says that the eye thing was probably shingles without the rash and now this is my 2nd bout on a different dermatome. Says wait for a facial droop or another breakout before we consider immunology etc. I am so discouraged that I have to wait to literally have a facial droop or drop dead for more work up. 

So back to December with the "real" breakout with the rash. Started Valtrex 2 days after the rash started on my left shoulder blade. It wrapped around under my armpit to the front all the way around with a couple of breaks. It was, as you all know, hell, like a cat scratch on a sunburn 24/7. I am left with PHN in the shoulder blade area, deep pain and tingly bee stingy sensation from where it was in the shoulder blade. The front remnants do not have pain. I used a cream late in the game called Shingles symptoms relief cream by Dermachange from Amazon (has Manuka honey and some CBD and other stuff). It burned the oldest bumps but it made the newer ones just coming reabsorb. They went away never opened up and no PHN. So for what that's worth. 

I stayed on Valtrex for 2 weeks at 3 grams a day. Then stopped.

Felt gross again around New Years and took another week of 3 grams a day. 

FF to February where I got BOTH A & B influenza. I thought I was going to die, but I fought it off and no shingles during it thank god. Slow recovery from flu week by week. Back to work full time.

I have felt like CRUD for the past month or so, so my doc gave me another round of 3 grams a day then 1 gram a day for suppression.  I forgot one DOSE and re introduced some chocolate in my diet and ate a chicken sandwich with walnuts and BAM> I broke out again yesterday with a very small cluster on my shoulder blade. It was so strange because I feel pretty energetic and strong. And there are the damn bumps.  I used the Shingles relief cream on the bumps and they are virtually GOME today. No redness not raised, just 2 snakebite pinholes.  So I am EXTREMELY anxious I am going to develop a full blown attack wrapping around again. Is there anyone here who has had them recurrent who was able to "stop" them or had a milder case. Or god forbid a worse case?  Is chocolate enough to give me a 3 bump breakout? UGGGH.

I am feeling so scared and so anxious that these weird cries for help my body is giving, is because something is really wrong like something difficult to find- ovarian cancer (I have a 4cm ovarian cyst that is being watched), and I also have a Mirena. I would LOVE to get it out I have heard horror stories about Mirena side effects but I am afraid to add another variable of change to this equation. 

Right now I seem to have squelched the impending breakout on my shoulder blade, but my face eye, cheek, head is itchy etc and I am TERRIFIED I am going to break out on my face and my back at once. Or in the roof of my mouth and throat which feels irritated today. 

I am taking L-Lysine 2000 a day, swishing with colloidal silver, and swallowing a litle bit,  and taking Valtrex 3X a day 1 gram. I have other stuff in my arsenal like CBD cream and XCBD oil  which came today and I will try tonight although I am a little afraid to, and I also have some black seed oil supplement which is supposed to be wonderful for immune build up. Anyone had any luck with that? Does anyone have any advice for anything I should or shouldn't be doing. I am also taking Airborne gummies and using a Restore nasal spray to keep my nose clear.  I do epsom salt baths for the magnesium. 

If you got this far congratulations I am sorry to burden you fair readers I am at the end of my rope and feel like I cannot cope with all of this and I will not survive it. I don't have a good PCP that is understanding. I don't drink, smoke, take anything stronger than tylenol and do not live near a good functional doctor. 

Right now I feel a sore in my mouth and am anxiety ridden as I sit here that because my face is so painful and numb and tingling again could I break out in 2 derms at once? 

Does anyone know if I can get a Shingrix shot in this present condition? 

Thanks in advance friends. You have my empathy and support! 

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4 Replies

  • Posted

    Hi Sharonell.

    i had shingles on my face Quiet bad 6 weeks ago.

    i am still getting tingling and sometimes burning sensation, 

    but iv found the more I’m stressed the worse it gets, today isn’t a good day for me, 

    due to out side family issues.

    im to very scared it will come back because the pain is horrendous as you well know.

    iv got my third eye specialist appointment next month because they were concerned that it was on my bottom eye lid. So will find out if there is any damage.

    are you in the UK. 

    I think they don’t like to give the injection until we are in our 60 ( money maybe.)?

    have you had your vitamin D checked, I found our i was deficient and that lowers your immune system so it could be as simple as that and that can be sorted with medication.

    im a stress head take on everyone’s problem. And suffer with health anxiety which I’m on low dose of antidepressants

    Your not alone, go talk to your GP and see what they say about the vaccine. You can only ask 

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  • Posted

    Dear Sharonell,

    I know how you feel as I have had recurrent Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye.

    What has helped the most are two things:

    High Lysine Low Arginine Diet of which you are already aware. You break the diet, and BAM!

    Get your Vitamin D level checked! It should be at least 40. Vitamin D is necessary for immunity. I take 2000IU daily. Be careful, as multivitamins often contain 1000 IU.

    Once I started on Vit D, my episodes decreased markedly.

    I would not get the Shingrex until you get the episodes under control. I am waiting to see my new internist, and then will have the Shingrex. Shingrex apparently causes individuals to feel quite ill, although not as bad as Shingles.

    I am sorry about the Trigeminal Nerve Pain, which is excruciating. The Herpes Zoster-Shingles on my ear is on the Trigeminal Nerve.

    Yes, you can have two non-contiguous dermatomes with Herpes Zoster-Shingles. It is uncommon, but it definitely occurs. Are they on the same side?

    If your face feels the same as your shoulder did when you had Shingles there, you might want to start the full dose of Valtrex.

    Please see your Physician, and consider finding a new one, even if it means traveling a far distance.

    If it is bothering your eye, you need to see an Ophthalmologist. Where are you located?

    Best Wishes

    Merry Juliana

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  • Posted

    Poor u its a horrible thing ah but ive found stress really aggrivates it .well it does in my case whrn im anxious doing too much my cousin put me in lemonbalm tea its great i pick tbe leaves off plant i keep 3 in my kitchen then i steep for 10 mins in hot teapot water and sit and drink the lot slowly it works on the nerve endings so try it.its awful when your face feels weird ah .i hate it too
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  • Posted

    Hi Sharonell

    Please try to stop getting anxious as it is the worst thing for your shingles. Shingles feeds on anxiety and stress. It would also be best if you didn't eat chocolate or anything else that is high in arginine (research a high lysine diet).

    I suffered from recurring shingles throughout 2017 and found that a multi-disciplinary approach is the only way to cure it.

    I consulted: An immunologist (to check all vitamin levels and conduct a thorough series of tests to pinpoint the underlying cause), a naturopath (to ensure you are taking the correct dosage of supplements to build immunity and following the correct diet), acupuncturist (to assist in building immunity) Chinese herbalist (to assist in building immunity).

    1.       Manuka honey 1 teaspoon with 1 tablespoon of a probiotic rich yoghurt 3 times per day

    2.       Turmeric and black pepper 1 teaspoon 3 times per day with warm skimmed like a cup of tea DO NOT HAVE THIS IF YOU HAVE GALLSTONES

    3.       Black seed oil ½ teaspoon twice daily

    4.       Chinese herbs prescribed by a qualified Chinese herbalist twice daily

    5.       Kundalini yoga to build a strong immune system

    6.       Acupuncture twice weekly

    7.       Anti-viral medication prescribed by a doctor WHEN NECESSARY –DO NOT TAKE THE CHINSESE HERBS AND THE MEDICATION AT THE SAME TIME

    8.       7. High doses of vitamin C, zinc, magnesium, vitamin B complex, vitamin D

    9.       A 500ml freshly squeezed juice with carrot, celery, beetroot, ginger, lemon, watermelon, kale and spinach

    10.    Avoid foods high in arginine and eat foods high in lysine

    11.   REST, REST AND MORE REST

    Hope this helps

    Ruby

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