Shingles Experiences?

Hi, folks.

Please share your experiences of having shingles!

I have an expanding stripe of rashy spots on one side of my ribcage that's painful and somewhat itchy, with nerve pain radiating from it and beginning before the little blisters do. I've been under extra stress lately with a family visit and poor sleep.

Any ideas for how to help this resolve faster? Things I should or should not do? How worried should I be about this messing me up in a long-term way?

Thank you!

Go wherever you have to go to get Valtrex/Valacyclovir TODAY. Do not delay.

I have had it twice. I would not play with shingles, wait it out, or try to treat it naturally. Shingles can be very severe in some cases.

For the itching, make a 50/50 mix ACV with cool water. Either pour it over the area at the end of your shower or soak a washcloth in it and lay it over the area. I couldn’t stand anything touching me, so I did it in the shower.

Stay away from all foods and supplements high in arginine. Take l-lysine supplements 2-3 day.

Call me in the morning. (LOL!!!)

I just found an older shingles post from June 2021, where I posted my experience. This is what I posted about it:

“When I had shingles, the first symptoms were pain and burning that started in both hips and lower back. At first, I thought I was herxing, but it felt different than any of my Lyme/bart/mold symptoms.

The rash didn’t start until a couple days later. It started in the groin in my bikini line. I actually had a pre-existing appointment with the Functional MD when the first blisters had showed up. I told her about the pain on both sides. At first (to her DISCREDIT), she insisted that shingles only occurs on one side. (This is NOT TRUE.). Then I showed her the blisters, and she knew it was shingles and prescribed Valtrex.

The blisters were tiny and looked a lot like contact dermatitis. What was interesting was once I started the Valtrex, the blisters stopped erupting, but I could see where the rash was on my skin. The area that first had the blisters in my groin never really hurt. The largest area on my right hip hurt and had awful twitchy nerve pain.

I had long term nerve pain and numbness that would flare periodically. I thought it went completely away after taking Flagyl last July for something else, but it has resurfaced again in recent months.

I think I did feel like I had a slight fever and fatigue. I know I did when I got it the second time. The second time, I caught it quicker and started Valtrex before I got any outbreak of rash.

Oh, BTW, even though I started out with pain on both sides, I only had the outbreak on the right side.”
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Update:

My first shingles occurred April 2017. Second time was Jan 2018.

I had post-herpetic nerve pain and numbness very long term following the first case (still have it to some degree). Over the years, I did several rounds of Lomatium with Isatis. After stopping the rounds, the shingles would be quiet for a while, but something would always bring it back.

In Aug 2020, I took 7 days of Flagyl. The shingles pain seemed to resolve after that until this summer after having to move into my car again because of unbearable mold toxins. My guess is Flagyl (which used to be called a cyst buster) opened something up so my immune system could get to the virus, or it reduced overall bad bacteria giving my immune system some relief from being so overburdened. Who knows?

i know WBF said not to rely on herbals - but since you had adverse reactions to antiviral meds i thought i remembered buhner had something on this in his herbal antivirals book

he says treatment is
1 systemic antivirals - recommended isatis, licorice, chinese skullcap - equal parts 1/4-1/2 tspn 3-6x
and also lemon balm tincture - herb Pharm do it - 1/4 teaspoon 3-6x - together will help stop the infection flaring and heal the nerves

2, immune formulation - cordyceps. astragalus ( poss not in chronic lyme? ) Rhodiola - equal parts - 1/2 teaspoon 3x - helps strengthen immune function to help prevent future attacks that often become more frequent as one ages

3, Topical healing - lemon balm infused or cordial - or pine pollen cream applied daily

there is also a bunch of stuff for nerve pain

What the doctor said:
- You have shingles.
- You first noticed the sensations five days ago, so taking Valacyclovir probably won't be effective, but I can give you a prescription for it anyway if you want. If you react poorly to it, then just don't take it. It's a virus, so like any virus, it just has to run its course. The antivirals only make a difference if you take them within the first 72 hours of symptoms.
- There's nothing else you can take for this except for Valtrex, Famvir, and acyclovir.
- The blisters will stay in that one area, on that one side. It's not going to appear anywhere else.
- Get some rest. Shingles can be a sign that your immune system is a little down.
- Cover the blisters with a bandage and wash them with soap once per day.
- It should resolve totally fine, since you're basically in good health, right? Nothing to worry about.
- No kids around you can get infected as long as they have been vaccinated for chickenpox.

Every website says SEE YOUR DOCTOR IMMEDIATELY IF YOU SUSPECT YOU HAVE SHINGLES and yet this is what a doctor visit for shingles looks like. Maybe if people know their symptoms are shingles on day one, then it's a more reasonable idea, since the meds are more effective then, but at first I thought I had dry skin, then irritation from a tight bra, then eczema, then bee stings, etc. I didn't realize it was shingles immediately!

They also fought to get me to come to the office in person, which I basically refused. I'm not risking COVID when my body already is making it clear that its immune system is faltering. The doctor had no problem diagnosing me through photos and my webcam.

I'm feeling pretty sorry for myself today. I was stressed out by preparing for a big family visit, and I was so happy to spend time with them, and feeling so excited that after so many years of being sick I actually could do things with them while they were here! We had a great time ... and it gave me shingles. It's hard not to feel like a fool.

I need to focus on keeping my immune system strong but reasonable right now. I want to avoid a cytokine storm and other complications I've been prone to in the past.

Thank you for this very sweet post, WBF. I appreciate you, and will take your words to heart.

Update, in case someday anyone on the Lyme forum has shingles and is scared like I have been:

I took the valacyclovir (Valtrex) starting with half-doses. At first I felt dizzy and woozy from it, but by the second day I was seeing improvements in the shingles symptoms, which was reassuring. (I started taking it on day 7 of my shingles symptoms, but definitely saw improvement, despite my doctor's assurance that the antivirals would not make a difference if started that late.)

I kept taking lysine, lemon balm, rhus tox, and extra vitamins C and D as well. I increased my usual doses of medicinal mushroom complex, quercetin, magnesium, and milk thistle.

My symptoms are improving, but I still feel worn out, now on day 12. I still feel like I have a sunburned back, but the twitches, stabbing sensations, and burning elsewhere on my body have stopped. The lesions along my ribcage have scabbed over and are less painful. Waves of intense itchiness come and go. Somehow I never have been troubled much by these things at night, I suppose because my body knows it needs rest.

I find the fatigue triggering, even though it's probably fairly standard. I know that I have a mild case of shingles, but I worry about what having it at all says about my immune system's integrity, and about potential cytokine storms and other after-effects of an obvious viral reactivation. I know these are the types of setbacks we all worry about from Lyme flares as well.

I'd appreciate any ideas for supporting the lymphocytes that keep latent viruses latent!

L-lysine is all I know about reducing viral replication and avoiding l-arginine.

Glad to hear the twitching, stabbing, and burning have mostly stopped. Sounds like you’re through the worst of it. I don’t recall having a cytokine storm after shingles. I did have those after short courses of abx and after a bizarre stomach virus.

Beware of heat, sun, exercise, and exertion for a while. They can be triggers. When I got shingles the first time, oddly, it was during a big relief from stress. I had just stopped working, which had a noticeable positive effect on my symptoms. I was spending much needed time with my parents, and it was early spring. I was spending long periods of time outside in the sun every chance I got. I was also going for walks more. It was during a walk that I first noticed the unusual pain in my hips that was my first symptom of shingles.

I think if you continue the l-lysine, proceed cautiously and slowly with resuming normal levels of activities, do all you already know about to reduce inflammation and support the immune system, then you’ll be fine.

Save the worrying about how this happened in the first place for later.

Also, don’t worry about a cytokine storm. Just load up on anti-inflammatory supplements and stress reduction techniques. You’re a pro at this! Worry is just stress and causes undesirable effects in the body. Relax, rest, and laugh.

saraeli - Wish I could help more, but I had shingles years after first Lyme symptoms (and before Lyme diagnosis). Mine were not real painful, but I do remember they came before Sweets Syndrome hit. Both Sweets and shingles came after the highest stress I think I have ever been through with work and the doctors testing for Lukemia, That's when they did a bone marrow biopsy (first of two).

Point being the stress, no doubt, put all of it in motion. Can't remember what I took for it. I do hope you find a quick answer for it. It sounds like you have found the role of stress with it.

Hi Sara, i really don't have a whole lot to offer, but just wanted to say that I completely understand the feeling of having trouble healing because of stressors that just keep on coming. I absolutely feel that this gets in the way of healing and I keep experiencing it, too. I recently did the dnrs dvd set, somewhat based on all of your really helpful explanations and good results. I am trying very hard to implement the practice and truly believe in it. Struggling, but I will start a different post about that! Do you think dnrs would be helpful at all in addressing the lingering shingles symptoms? I honestly don't know, since I am so new to the whole thing. But I often feel that illnesses like this linger or ebb and flow because of continued stress and limbic involvement. I just hope you start to feel better and wanted to say I really empathize with the reality of trying to heal while keeping it all going.

Hi Sara - sorry to hear your ongoing troubles

i have Buhners antivirals book here - he suggests the following

1,systemic antivirals
i, licorice, isatis, chinese skullcap, all as tinctures - mixed in equal parts and taken 1.25-2.5ml 3-6x
ii, lemon balm tincture 1.25ml 3-6x day ( says it helps prevent re-occurrences over time )

2, immune formulation - astragalus (caution in chronic lyme ), cordyceps, rhodiola - equal parts 2.5ml 3-6x day
( says this helps offset the general reduction in immune function after 50 that leads to outbreaks)

3, topical healing - lemon balm infused oil topically daily

I had post herpetic neuralgia for years afterwards and can still get flares.

I used to do rounds of Lomatium, Isatis, Licorice with 2 oz bottles of each. I used to start at 10 drops each and work up to 30 or 35 until I ran out. It gave no relief until after I finished the round. Then the shingles would be quiet for a while.

The thing that really stopped it abruptly and for a long time was Flagyl that I took for a week in August 2020. Go figure.

I think pretty much my entire experience is found throughout this post. I have no more recent insight to share.

Do you have shingles right now? Are you taking Valtrex?