Thank you ALL

Hi Teresa, Thank you for taking the time to reach out to me. It means more than I can ever say and you are correct what you said that knowing we are not alone in this does help. Yes, it REALLY does. I never knew that reality till I found this forum with all of you beautiful people, who are going through the same things. Don't know if everyone else feels this same way at nights but no matter my daytime situation, surrounded by people who love me and would do anything they could, if they could, to ease my pain....after the lights go out and everyone is asleep, I lay awake and feel so very alone. This forum has filled that lonely void and I thank you all. Thanks again Teresa for your message. It meant alot. I hope you have a peaceful and pain free sleep, friend. God bless

Hi Shelia. Thank you for your kind sweet words. I'm so sorry that you have suffered to with shingles. I am in complete agreement with you on this new Shingrix vaccine. I've already had the first vaccine and going back for my second and final vaccine next Saturday on June 2nd. I will be standing at the door when they turn that key. Shingles has taken alot of my life, especially family life, from me but this past year has been the very worst. I still get it in my leg as you describe but also in my eye every time as well. I haven't had it on my back before and, bless your heart, i can't even imagine how awful it is for you just to treat it with topicals, being that it is so located out of reach. I am so sorry friend. Not wanting to spook anyone but since having the first dose, I began for the first time having shingles in more than my eye and hip. Since having the first, i've begun to have shingles on top of my head, in my hair, on my stomach area, my chest and even in my mouth on my tongue and under my tongue. The "Miracle Mouthwash" and lots of Anbesol have been my saving grace these past 6 weeks. Again, I don't want to spook anyone because the way I was headed, I probably would've gotten in all these new places, even if I had not gotten the first vaccine. I truly believe this which is why next Saturday on the 2nd, I WILL be getting the 2nd dose of Shingrix. With a 97% success rate, my hopes are hinged greatly on this new vaccine working. Never had so many people praying so hard for the success of modern medicine. Every friend and family has their fingers crossed too. God bless them all. Please let me know how you do on your next vaccine and I will do the same, friend. Do take care and talk,to you soon.

Hi Shelia. Thank you for your caring inquiry. Very kind of you. I read your post put loud with my husband here and he immediately went on Google to look it up : ) I am now looking at a picture of a bottle of Vitamin D on his smart phone screen. Bless his heart, we live this shingle life together, as he is my caregiver each time I go down. We are definitely willing to try anything.

Ref to my Vitamin D level, i can't say for sure that my levels are not low at times, especially since most often the shingles go directly to my eye and I am sedated immediately, drifting in and out of consciousness for days until enough time has passed that i don't scream when i regain consciousness. My husband attempts to feed me when I wake each time but it can be rightfully assumed that I don't eat that much during these times. Since I am on antivirals every day, instead of only during an outbreak, my outbreaks don't last for a week to 10 days as the typical shingles outbreak does, which was the case my first 3-4 years of shingles. My outbreaks only last for about 3 days at a time, which sounds great, except they will reoccur a week to 2 weeks later. Back to your question, it can be assumed that when i am sedated at home, most every level in my body probably drops low but in the early years after the shingles would go into my eye, I was immediately admitted into the hospital every time and was on constant IV, during my sedation. I have routine labs run often and nothing has been said before about my Vitamin D being low. Also, I was referred to MAYO Clinic for chronic shingles and spent nearly two weeks thete while they studied my case. Not sure if you are familiar with the practices of MAYO but your labs are run several times in a day, every day and i've not had my Vitamin D level come back low before. Nothing that caused any alarm to the doctors anyway.

Regardless, we are always open to any idea or possible solution and will be picking up a bottle of Vitamin D and adding that to my daily supplements. Thank you for this advice. Very sweet of you. Often, I am unable to eat solid food for 2-3 days between outbreaks because the PHN causes extreme sensitivity to my teeth. For this reason, i have been on both liquid Ensure and/or liquid Boost on a daily basis, whether i am able to eat solid food or not. This has probably helped keep my levels up.

I was going to post an update later today but I will share with you now. As i've mentioned, i took my first dose of Shingrix April 2nd and scheduled for my second dose next Saturday on June 2nd. Truthfully, my husband and I have not known what to think because since the shot, my shingles symptoms have increased to me having shingles in places i've never had them before, such as my stomach, chest, in my hair and on my mouth. I've had the PHN in my mouth before but never shingles in my mouth. We were not sure if it was the vaccine causing this or not but we intend to stay the course and I will have this 2nd shot without delay. Back to what I was saying that we weren't sure if the vaccine was causing it but soon Merry Juliana's advice on here, I did go to my doctor and he added Famciclovir to my daily regimen of 3000 mg of Acyclovir. Its been disheartening that we've seen little results for either the vaccine or the Famciclovir, until yesterday and today. Trying not to get my hopes up too much but have noticed since yesterday that I am having an outbreak on my nose and face as I commonly do but the other symptoms are not happening. We are not sure if its the Shingrix beginning to work or the addition of Famciclovir or both or neither, but there has been a definite change taking place. I am having the shingles breakout even mow, as I type this, but I do not have the normal pain, the fatigue, the flu-like symptoms or the "lightening in a bottle" pain that fires from my face to my ear to my eye, to my teeth, bouncing back and forth until i lose consciousness. It's like i'm having obvious shingles but without the intense pain that shingles always brings with it. Again, trying not to get our hopes up too much at this point but this is a first for me. Fingers crossed.

Thank you again for your suggestion. We will try it. My husband has already left to go to the pharmacy to pick up a couple bottles of Vitamin D now. I will be sure to tell you of any improvements. God bless you. God bless us ALL.

As I stated earlier in a post to you, it should be Vitamin D3 2000 IU daily.

You also need to follow a high Lysine low Arginine diet-Herpes. Perhaps your husband could Google this and see if you are following this.

Nuts, legumes, and chocolate are big offenders on this diet. You might try Lysine supplements.

I am so sorry you continue to do so poorly. I do know what it is like to have the frequent episodes. The Vitamin D3 helped me as did the High Lysine Low Arginine diet.

You shall be in my thoughts and prayers.

Merry Juliana

Hi Juliana. Hope you are doing well, my friend. Thank you for all you do on this forum and for the live and attention you put into getting the information out there. You are a sweetheart. I so much appreciate all of your great advice and will give this Vitamin D a try. As you know, we did have the doctor put me on the Famciclovir. I am taking both antivirals at this time every day. 3000 mg of Acyclovir and 1500 mg of Famciclovir. These two, I am taking daily, with the plan that my doctor will wean me off of one of them. With my recent good news to share, perhaps BOTH. Please read on....

I am pleased to announce that I am doing better now. I was beginning to lose hope in this new Shingrix vaccine but since yesterday, there have been some MAJOR changes. Please check out my post from about five minutes ago. There is hope, my friend. I've got to believe.

Bless you my friend and all you do daily for everyone on this forum . God bless