Shingles for months
Posted , 11 users are following.
hello..
I feel like I must be desperate if I'm looking online but I need to hear someone else has gone through this because nothing I read says it's like this.
I got diagnosed with shingles the day after Thanksgiving. I took two ten day rounds of Valtrex because my MD said it was trying to reactivate after the first round. It was on my face, in my eye and my scalp. The rash was gone within a week but here I am in February, still not feeling well. I feel so tired, I've had a sore throat the entire time, just a general feeling of being unwell. I have gone back to my MD twice and he keeps saying it just takes time. all of my labs are normal except low vitamin D. I don't know what else to do and feel like this has been way too long and I just want to feel well. I'm not a complainer and just keep pushing through but this has gone on so long..
any suggestions, or anyone deal with this? Thank you!
0 likes, 21 replies
TraciLoo
Posted
I also has Lyme Disease last July, so wonder if that had anything to do with my immune system being down and why this could be taking so long. I had blood work on that too and it is gone now.
thanks again.
DeborahDLF TraciLoo
Edited
i know your feeling so well, i was sick for a year but i was also so stressed out that it was all part of my virus. i did my best to lower my stress level, I took lots of vitamins, I stayed on my Valtrex apnd I got a lot of rest. Honestly those are the only things that you could really do to help you end it will also help you if it’s possible not to focus on your illness. That brings on more stressed when you’re sick and you don’t feel well and that’s all you can see. I wish you luck.
TraciLoo DeborahDLF
Edited
Thank you. I am trying to just live my life and not focus on the virus, it's just really hard, I feel like it has to be something my doctors are missing. but after reading this forum, I do see others have struggled with this, as well. Which does help..
I'm just sick and tired of being sick and tired. 😦
thanks for replying.
andrea43257 TraciLoo
Edited
Hi TraciLoo, I was diagnosed November 2017. I was sicker than I have ever been in my entire life, and that includes going through chemo back in 2012 for breast cancer. I was down for about 4 months, and have never regained my strength or stamina. I had the Shingrix vaccine as soon as I was able to and I really feel like that has kept it at bay at least, because I've had a few times where I've felt like it was trying to flare up again. Mine was in my mouth, throat, and right ear. I still need 8-10 hours of sleep each night and never wake up feeling refreshed. Still have a tickle in my throat, and feel like I must have a lot of scar tissue there. After 2+ years, I've come to realize this is my new normal. Last spring, sensing that my immune system was toast, I had my titers to measles, mumps, and rubella checked. I had no immunity to measles or mumps, so had to get a booster MMR. I now have those immunities, but still feel like my immune system isn't what it used to be. Sorry I couldn't be more uplifting. Hang in there.
TraciLoo andrea43257
Posted
Hi Andrea.
Thank you so much for replying. I am so sorry you are going through that.. how terrible.
It is disheartening to hear this nasty virus can do this.
I take breaks when I can, and always go to bed as early as possible. I guess it is all that I can do, really. That and just accept what is and wait it out. ugh.
Thanks, again.
Merry19451 andrea43257
Posted
Andrea,
Also get your Vit D level checked. Your history is similar to mine! Breast cancer, Herpes Zoster-Shingles in the ear, mouth, throat, scalp, recurrent. Ongoing fatigue, exhaustion, depression, PHN... I am taking Topamax and Venlafaxine, which help the fatigue, mental fog, and PHN. Sorry you are going through this!
I avoid Arginine rich foods. Fortunately, I dislike chocolate...lol!
Best Regards,
Merry Juliana
yogi12221 TraciLoo
Edited
This is totally normal. It can take a lot of time with wellness being very gradual and you may never be 100% better but you will get better. Do everything you can to help yourself by eating healthy and taking immune boosting vitamins and herbs. Over two years later, I am still tired and don't have the outside stamina that I used to. A few months after I was diagnosed, I was still so tired and weak but when it seemed like I wasn't going to get any better, that horrendously lousy was my new norm, I forced myself to try to get back into "normal" life. I could stay out in the world only one hour sitting before I had to come home to nap. It gradually got better but it was slow. Hang in there. We understand.
TraciLoo yogi12221
Posted
Thank you so much for replying.. this really sucks and I'm sorry you have dealt with it for so long, also.
Merry19451 TraciLoo
Edited
Hi TraciLoo,
The sheer exhaustion, fatigue, and depression you are feeling is normal after Herpes Zoster-Shingles. The Herpes Zoster virus not only attacks the sensory nerves, but circulates throughout your entire body. Many of us have exhaustion and fatigue for months, if not years after an initial episode of Shingles.
You didn't mention your age, and the dosage of Vitamin D3 you are taking. You need to take Vitamin D3 2000 IU daily. D3 helps strengthen the immune system.
Also, anyone in the States who has had shingles is eligible for Shingrix, which may help decrease the symptoms of the sore throat, fatigue, and exhaustion. You would need a note from your physician. If you are in the UK, you are not eligible until you are 70 years.
I have had Herpes Zoster-Shingles in my right ear, mouth, and throat every three weeks for the past 24 years and twice in my right eye. The last 2 years, it also involved my right scalp. Shingrix helped decrease the symptoms, but not the frequency of the episodes.
I am a Nurse Practitioner in the States.
Best Regards,
Merry Juliana
Merry19451 TraciLoo
Edited
Hi TraciLoo,
Lyme Disease would definitely alter your immune system response. Your Herpes Zoster-Shingles involved more than one dermatome, and required 2 rounds of Valtrex. I am going to post to you my letter regarding Herpes Zoster-Shingles and also private message you. Iy you could inform me where you live and your age, it would be helpful.
Thank you
Merry Juliana
TraciLoo Merry19451
Edited
Thank you, Merry!
I am 42 and live in New York.
My PCP said I can't have the vaccine until I was 50.
I am taking 4,000iu of Vitamin D. The PA said to take 5,000 but they don't see them that way and so I had 2,000 and take 2. I get it re-drawn in 3 months.
thank you for the helpful information.. nothing you read abut shingles talks about any of this.. I swore there was something else going on, so I appreciate all of the feedback but am so sorry that so many are dealing with this.
TraciLoo Merry19451
Posted
as for the two rounds of Valtrex.. I had just finished the first round, maybe 2 or 3 days had passed and my eye started getting swollen and red again and the rash started popping back up, ever so slightly. I went right back in and he gave me the second round.. but it was all in the same spot, days later.
i wouldn't feel so bad if my ears and throat didn't hurt so bad.. I can handle taking naps. 😃
Merry19451 TraciLoo
Edited
Hi TraciLoo,
Your PCP is mistaken. You definitely are eligible for Shingrix as you had Shingles. You need a note from your physician stating you have had shingles and the date. You may have to pay a Co-pay, but it will be worth it!
It sounds as if you have Ramsay Hunt Syndrome as your ear and throat hurts!
This is my primary site of infection, which then traveled to my eye,and also my scalp. Your infection did the reverse! Ramsay Hunt Syndrome affects the ear, throat, mouth, and possibly swallowing. It can give you a facial droop. You need to see an ENT at a university medical center. Also start on Famcyclovir 500 mg 3x daily for 10 days as it is more efficacious than Valaciclovir. Does your PCP not get it that you have Herpes Zoster-Shingles Oticus, or Ramsay Hunt Syndrome. Did he/she look in your ear canal and mouth and throat for vesicles-blisters? Even if the clinician doesn't see them, and you have one-sided pain,
it is Herpes Zoster-Shingles!!!! Shingles without the rash....
It is called Zoster Sine Herpete!
You also need to be medicated for the pain.
Ibuprofen does not help. Ask for Oxycodone!
I will send you my complete letter regarding treatment and management of Herpes Zoster-Shingles.
You might consider changing your PCP....
Please let me know how you are.
Best Regards!
Merry Juliana
TraciLoo Merry19451
Edited
Thank you, I am going to call an ENT tomorrow! I didn't think to go to one of those.
I appreciate it.
Merry19451 TraciLoo
Posted
HERPES ZOSTER SHINGLES
I am so sorry that you are suffering from this disease. Unfortunately, there is a lot of misinformation among health professionals. Many health care professionals are abysmally ignorant regarding the diagnosis, the signs and symptoms of the disease, and the treatment and management of the disease. They loathe to prescribe opioids for the acute pain.
I had my first episode 24 years ago in my right ear, mouth, and throat. It took three ENTs to diagnose it. It felt like I was in childbirth via my ear canal while being tased!
For the past 2 years it has also spread to my right scalp. I have had it twice in my right eye.
Because I suffered so much with the disease, I am extremely active on this forum. My goals are to educate, support, and advise the people. I have learned so much from many wonderful individuals on this forum. I am a retired Nurse Practitioner in the States.
There are three stages to Herpes Zoster-Shingles.
THE FIRST STAGE-ACUTE STAGE PREERUPTION
PAIN, often burning or lancinating
Itching
Patchy redness
Swelling, in the dermatomal area of involvement
Swollen Lymph Nodes, either at this stage or subsequently
Constitutional Symptoms
Headache
Photophobia
Aches and Pains
Mild Fever
Chills
Fatigue
Exhaustion
THE SECOND STAGE-ERUPTION
Grouped herpetiform vesicles-blisters developing on the red base (the classic finding)
The vesicles come in crops or waves over a period of usually 5 days
Skin findings that typically appear unilaterally, stopping abruptly at the midline
Vesicular involution: Vesicles initially are clear but eventually cloud, rupture, crust, and involute (shrink)
After vesicular involution, slow resolution of the remaining
red plaques, typically without visible sequelae
Scarring can occur if the skin has been compromised by
excoriation, secondary infection, or other complications
Almost all adults experience pain, typically severe
A few experience severe pain without a vesicular eruption (Zoster Sine Herpete)
Symptoms tend to resolve over 10-15 days,
but can last much longer
Complete healing of lesions may require up to a month
THE THIRD STAGE PHN
POST HERPETIC NEURALGIA
Persistent or recurring pain lasting 30 or more days
after the acute infection or after all lesions have crusted (9-45% of all cases)
Pain usually is confined to the area of original
dermatomal involvement
The pain can be severe and incapacitating
Pain can persist for weeks, months, or years
Slow resolution of pain is especially common in the
elderly
PHN is observed more frequently after cases ofHerpes Zoster-Shingles Ophthalmicus (HZO)
Herpes Zoster-Shingles Oticus
(Ramsay Hunt Syndrome)
and in instances of upper-body dermatomal involvement
TREATMENT & MANAGEMENT
Antivirals
The cornerstone of treatment
Should be started within three days of onset of
symptoms or rash
Famcyclovir 500 mg 3x daily 7-10 days
Most efficacious
Newest Antiviral
Valacyclovir 1000mg 3x daily 7-10 days
Less efficacious than Famcyclovir
Large pill
Based on Acyclovir
Acyclovir 500mg 5x daily 7-10 days
Most resistance to this Antiviral
Oldest Drug
Cheapest drug
Difficult schedule of 5x daily
USE THE FOLLOWING of each class together
Anticonvulsants
Gabapentin-Neurontin
Dosages must be tapered up and down
Effective as adjunct in acute stage and PHN
Pregabalin-Lyrica
Dosages must be tapered up and down
Effective as adjunct in acute stage and PHN
Weight Gainer
Affects moods
Difficult to wean off due to withdrawal symptoms.
Antidepressants
Dosages must be tapered up and down
Effective as adjunct in acute stage and PHN
Difficult to wean off due to withdrawal symptoms.
Cymbalta SNRI
Venlafaxine SNRI
Elavil tricyclic
ANALGESICS
OPIOIDS
Oxycodone
Codeine
Hydrocodone
IF YOUR PAIN IS NOT WELL CONTROLLED WITHIN THE FIRST TWO WEEKS, GET IT UNDER CONTROL BY DEMANDING OPIOIDS.
The pain often increases markedly the second week of the disease.
HERPES ZOSTER SHINGLES IS ONE OF THE MOST PAINFUL AFFLICTIONS OF MANKIND SECOND TO CANCER AS IT INVOLVES NERVE PAIN.
IT IS THE PHYSICIAN'S DUTY TO HELP THE PATIENT IN PAIN. OPIOIDS STILL ARE THE BEST OPTION FOR ACUTE PAIN.
Gabapentin-Neurontin or Pregabalin-Lyrica can help decrease the neurogenic pain when used in conjunction with Opioids
Topicals
Lidocaine/Benzocaine
Found in Bactine, Solarcaine, Oragel, Salonpas
Auroguard, etc
Numbs the skin nerve endings
Corticosteroid Creams OTC
Decreases inflammation, soothes topical swelling,
pain
Cool Compresses/ICE
COTTON CLOTHING
SLEEP AND REST
You will experience fatigue and exhaustion and want to sleep. Obey your body. You cannot power through this. Take off from work. If you don't, it will only get worse.
CONTAGIOUS
Remember: your exposed rash is contagious to all individuals who have not as yet had chickenpox.
This list includes all pregnant women and their unborn fetuses. Many women do not know in the early stages if they are pregnant.
If someone has been fully vaccinated, they are protected. The unborn child is never protected.
Cover your rash with clothing or a dressing.
You are no longer infectious when every last vesicle-blister has scabbed over/ dried up.
PREVENTION of SHINGLES
Get the Shingrix Vaccine, a two part injection, taken 2-6 months apart.
The efficacy is 93%
ADDENDUM the Shingrex vaccine has helped decrease the intensity of pain of my episodes, but not decrease the frequency of episodes.
High Lysine Low Arginine Diet
Google High Lysine Low Arginine Diet and Herpes.
The amino acid Lysine helps decrease Herpes and Arginine triggers Herpes Zoster-Shingles.
If you binge on chocolate or nuts, and find yourself getting a horrible prolonged shingles episode after,
it is due to the high amino acid content of Arginine in chocolate and nuts.
You can take Lysine supplements, but there can always be issues with drug interactions, adverse reactions, and harm to the heart, liver, and kidneys.
I hope this letter has helped you in understanding your disease and how to care for yourself.
Merry19451 TraciLoo
Posted
Also, TraciLoo,
I am hoping you saw and were followed by an ophthalmologist regarding your eye. It is considered a standard of care that a patient with Herpes Zoster-Shingles in or near their eye be seen STAT by an ophthalmologist. If you were not seen then, you need to be seen now by an excellent ophthalmologist. If your PCP did not immediately send you to a ophthalmologist, he/she would be considered incompetent.
As you have an earache now, does your PCP know? He/she should have referred you to an ENT!
TraciLoo Merry19451
Edited
I was seen by an ophthalmologist. 2, actually.
My PCP sent me to the ER because it was so involved in my eye, so I spent my Saturday there getting checked with all kinds of dilation and dyes and stuff, then they told me to go back and have it done again a week later , which I did.. and now I have to do it again in 6 months (June).
I am pretty sure I told them of my throat and ears. My ears aren't pain as much as this weird full feeling. it's hard to explain but I can like fell what connects your throat and ears. it feels like that tube is very full, almost like when they need to pop.
my son's ENT has an urgent care, I don't think I will have time to go today, but I'm definitely going tomorrow to have them check it out.
Merry19451 TraciLoo
Posted
TraciLoo,
Excellent...
I just like to make certain you are cared for. Many have not been seen by an ophthalmologist when their eye is involved.
Do you have allergies? hayfever? Asthma? Itchy ears or throat? You may have eustachian tube dysfunction, in which the tube connecting your ears, nose, and throat gets obstructed with fluid. It feels like pressure and sometimes pain. The ear drum will look dark, instead of light grey.
Also, regarding Lyme disease, how long were you treated?
TraciLoo Merry19451
Posted
no to allergies etx.. none of that.
I actually just got back from the ENT. he doesnt think this is shingles related. he stuck a tube down my throat and said I have silent gerd. started me on a PPI 40mg BID. I have a pressure and hearing test next Friday.
I do drunk a lot of lemon water, tea and beer a few nights a week so I guess that makes sense..
what else can be wrong with me!? lol
now I have to stop it all! ugh
I was on Doxy for 21 days for the lyme. I had my labs drawn last month (6 months post treatment) and he said there was no active infection. it was still positive but I guess it comes up differently.. something about rings or something?
I appreciate all of your replies so much.