Shingles – the word sends a chill through me. I was introduced to shingles through my grandfather’s wife, Ethel. With her Scottish brogue and her lively personality, she was a great addition to our family after my grandmother died. She and my grandfather loved to hit the dance halls – until she came down with shingles. She spent the last couple years of her life in agony in bed – telling us that she wished the lord would take her away.
Then a couple of weeks ago, I bumped into a friend about my age who lifted up his shirt to show a dazzling array of fiery welts extending across his stomach and back. Thankfully, he’s recovered – for now.
It seems we can literally never get away from the herpes viruses. Master evaders of the immune system, and ubiquitous in the population they’re with us from the day we get them until the day we die. The only question is whether we can keep them in check or not.
Shingles or herpes zoster is caused by the reactivation of the varicella-zoster virus (VZV), also known as human herpesvirus 3 (HHV-3, HHV3) – which also produces chickenpox in children. Virtually everyone (99%!) born on or before 1980 in the U.S. had chickenpox – whether they remember it or not – at some point.
After the initial infection with VZV (chickenpox), the virus lies dormant in a particularly touchy place – sensory nerve roots or bodies called ganglia – found in the trigeminal nerves in the face, the dorsal root ganglia outside the spine, and the nerve bodies that transmit autonomic nervous system signals.
There, the virus usually lies dormant for decades only to erupt in about 25% of people whose immune systems fail to keep it under control – usually as they age. Once reactivated, the virus migrates up the sensory nerves to the skin where it produces produce shingles or herpes zoster, and with it, the rather stunning and usually very painful rashes. For people over 85, the incidence is believed to be one in two.
Feelings of pain and tingling usually precede the appearance of the lesions that appear on the skin. The burning pain, flu-like symptoms, the feelings of depression, and motor weakness they can cause usually subside over a couple of weeks, but in about 10–15% of cases, a painful and often disabling condition called postherpetic neuralgia occurs. At this point, nerve damage has occurred and antivirals are no help. Instead, doctors turn to pain drugs, anticonvulsants, and antidepressants which have limited effectiveness.
Other complications can occur. Herpes zoster ophthalmicus (HZO) – which occurs in about 10% of herpes zoster cases – produces burning pain, extreme sensitivity to touch (allodynia), and headache along the branch of the trigeminal nerve that leads to the eye. HZO can result, particularly if left untreated, in serious eye problems, and it increases the risk of stroke.
In Ramsay-Hunt syndrome (herpes zoster oticus) different sensory neurons in the face are attacked, causing facial paralysis (palsy), ear and face pain, and sometimes hearing and balance problems. In Zoster sine herpete, skin lesions are not seen, but skin pain and motor weakness are found. Other possible outcomes include inflammation of the spinal cord (myelitis), inflammation of the brain (encephalitis), cerebellar ataxia (coordination problems), septicemia, pneumonia, and toxic shock syndrome.
An interesting 2009 hypothesis proposed that shingles, in the form of zoster sine herpete; i.e. herpes zoster without rash, might account for some cases of ME/CFS. Recently, a large study found that COVID-19 was associated with an increased risk of coming down with herpes zoster. That, of course, made sense given the continuing findings of herpes virus reactivation in long COVID. In what will probably surprise no one, as well, having herpes zoster was associated with a significant increase in coming down with ME/CFS.
Diagnosis and Treatment
While antibody tests can be used, they are only partially effective. PCR tests are the gold standard for diagnosis. In all cases, the effectiveness of the antiviral treatment (oral acyclovir, valacyclovir, penciclovir, famciclovir) is greatly enhanced if the reactivation is caught early – within 48-72 hours of the appearance of the rash.
Varicella zoster immune globulin (VariZIG) can be used in high-risk individuals within 10 days of the appearance of the rash.
Another Vaccine – Another Tough Question
There’s absolutely no doubt that the shingles vaccine works. The question is whether to take it or not. On the one hand, you risk the possible side effects of the vaccine, on the other a possible debilitating and painful illness. The same immune deficiencies that might end up in experiencing more side effects with the vaccine could also conceivably increase the possibility of viral reactivation and shingles.
The shingles vaccines are one of the more effective vaccines around. Prior to the introduction of the vaccination program, shingles used to be quite common in the U.S. with an average of 4 million coming down with it in the early 1990s. Since the introduction of the varicella vaccination program in 1995 in the United States, shingles “morbidity” (cases and hospitalizations) and mortality (deaths) have decreased by 93 and 95%.
Various shingles vaccines have been developed over time. An older one Zostavax (Merck) simply consisted of a one-time, larger-than-normal dose of chickenpox vaccine. While it produced fewer side effects, it is not as effective for as long a period as the double-shot Shingrix vaccine and is not suitable for people with immunosuppression or immune diseases. Merck stopped selling it in the United States in November 2020 and Australia in 2023,
The Shingrix vaccine is given in two shots two to six months apart. Not only is it more effective than Zostravax but lasts longer – at least 7 years – and possibly much longer. In adults 50 to 69 years old with healthy immune systems, Shingrix was 97% effective in preventing shingles and 91% effective in adults over 70. Even in adults with weakened immune systems, the CDC reports that the Shingrix vaccine is 68%-91% effective in preventing shingles.
The usual list of side effects – sore arms, and flu-like symptoms lasting a few days – are listed. One possible serious side effect concerns a very slightly increased risk of Guillain-Barré syndrome. One large study found approximately 3 excess Guillain-Barré syndrome cases per million vaccinations in senior citizens.
As with any vaccine, try to get a good night’s sleep after getting it, as this may help boost the immune response.
Fifty years of age seems to be a cutoff point. The Canada Immunization Board reports that “The incidence and severity of both shingles and post-herpetic neuralgia increases sharply after 50 years” and that the treatment options for both have “limited effectiveness”.
Availability – shingles vaccines appear to be readily available – the question is whether insurance will pay for them or if you have to. The two-shot Shingrix vaccine costs about $360 U.S.
- My personal experience with shingles – the condition caused by a herpes zoster virus reactivation – was of my grandfather’s wife – a vivacious woman who spent her last years in agony in bed because of it.
- Herpes zoster is the virus that causes chickenpox. Virtually everyone born before 1980 – whether they experienced chickenpox or not – has been exposed to the virus.
- After the initial infection, the virus lies dormant in a particularly touchy place – sensory nerve roots found in the face region or outside the spine, or elsewhere. There, the virus usually lies dormant for decades only to erupt in about 25% of people whose immune systems fail to keep it under control – usually as they age. As we get older reactivation becomes more and more likely until after the age of 85 it happens in one out of two people.
- When reactivated the virus moves up the nerves to the skin where it produces its characteristic welts, burning or stabbing pain, flu-like symptoms, etc. These symptoms usually subside over a couple of weeks, but in about 10–15% of cases, a painful and often disabling condition called postherpetic neuralgia occurs. At this point, nerve damage has occurred and antivirals are no help. Instead, doctors turn to pain drugs, anticonvulsants, and antidepressants which have limited effectiveness. Other complications can occur such as eye problems, inflammation of the spine and brain, stroke, etc.
- If a shingles rash occurs it’s critical to get it treated quickly with antivirals within 48-72 hours of the rash appearing.
- Canada reports that “The incidence and severity of both shingles and post-herpetic neuralgia increases sharply after 50 years” and that the treatment options for both have “limited effectiveness”.
- Shingles vaccines have dramatically reduced the incidence of shingles in the U.S. since the early 1990s. Since the introduction of the varicella vaccination program in 1995 in the United States, shingles “morbidity” (cases and hospitalizations) and mortality (deaths) have decreased by 93 and 95%. Even in adults with weakened immune systems, the CDC reports that the Shingrix vaccine is 68%-91% effective in preventing shingles.
- Various shingles vaccines have been developed over time. An older one Zostavax (Merck) simply consisted of a one-time, larger-than-normal dose of chickenpox vaccine. It is efficacious but is not as effective or as long-lasting as the double-shot Shingrix vaccine now in use in the U.S., Canada, Australia, and the U.K.
- Both the U.S. and Canada recommend that adults over the age of 50 get the Shingrix vaccine. Even if you’ve already had shingles, or have already received the Zostavax or the varicella (chickenpox) vaccine, the CDC still recommends that you get the Shingrix vaccine.
- The Shingrix vaccine costs approximately $360 in the U.S. but is largely covered by insurance there. Other countries provide less financial support but the vaccine appears to be available for those willing to pay for it.
- Four ME/CFS experts responded to my question about whether they recommended getting the vaccine. All recommended getting the vaccine, and two stated their patients did well with it, while one cautioned that people who had trouble with prior vaccines might want to wait until more autoimmune studies were done on it.
- Check out the Shingles poll at the bottom of the post to see how people with ME/CFS and other conditions responded to the vaccine.
Even if you’ve already had shingles, or have already received the Zostavax or the varicella (chickenpox) vaccine, the CDC still recommends that you get the Shingrix vaccine.
The Affordable Care Act and the Inflation Reduction Act of 2022 mandated that insurance companies pay for Shingrix in the U.S. and I paid nothing for mine last year.
The United Kingdom – the National Health Service reports that a shingles vaccine is available to people who are between 70 and 79. Most people will get the Zostavax vaccine, but the Shingrix vaccine is provided for those with immune issues.
Canada – the Shingrix vaccine was approved for use in Canada in 2017 and Zoxtavax is also available. Although the National Advisory Committee on Immunization recommends the Shingrix vaccine for Canadians over 50, the cost depends on a person’s drug plan and the province they live in. Ontario, for instance, provides free Shingrix shots to people 65-70 years of age.
Australia – Zostavax is being replaced by Shingrix this year in Australia as well. The Australian Immunization Handbook recommends that all adults 60 years and over, and adults aged 50 years and over who live in the same household as someone who has a weakened immune system, get the vaccine.
Support for getting the vaccine is limited, though. Only non-Indigenous individuals aged 70 years (no one younger or older – only 70-year-olds (!)), and Aboriginal and Torres Strait Islander individuals aged 50 years or older, as well as immunocompromised individuals aged 18 years or older, will have free access to the vaccine. Individuals 70-79 can get the Zostavax vaccine free until October 23rd. Everyone else has to pay for it.
ME/CFS Expert Recommendations
I asked several ME/CFS experts whether they recommended getting the Shingrix vaccine.
- Dr. Benjamin Natelson – I am a big supporter of people getting this vaccine. This one really works and shingles can be a horrible, disabling illness.
- Dr. Charles Lapp – My patients have tolerated the Shingrix vaccine well, except that the shot itself is quite uncomfortable. Two are required. I remind patients that Shingrix does not prevent shingles, but reduces the severity. For those who prefer not to have the discomfort of the two shots, I remind them that the antiviral drug Valtrex is a very effective alternative should they contract shingles.
- Dr. Susan Levine – I think the decision of whether to give the Shingrix vaccine must be made on a case-by-case basis. We’ve had a number of cases in which vaccines have either triggered a relapse or the onset of ME/CFS, but we also know that COVID and a suppressed immune system can increase the likelihood of getting shingles, which can also cause irreversible damage. I think in an ME patient who has previously tolerated vaccines, that Shingrix should be recommended and that the patient be observed for the unlikely occurrence of Guillaume-Barré syndrome. In someone with a track record of adverse reactions to vaccines, it may be prudent to wait until there is more data collected on sequelae of Shingrix in autoimmune or immune-compromised hosts.
- Dr. Kathleen Kerr – My Shingrix vaccine experience for ME/CFS patients is in line with other vaccines. I’ve had a few patients down for a week or two but none that did not get back to baseline. If I get the chance, I generally recommend pre-loading with vitamin C and as well the mast cell stabilizers per Nancy Klimas for the Covid vaccine.
Dr. Klimas’s suggestion for mast cell stabilization while taking a vaccine”
You can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on. Before the vaccine make sure you are taking enough antioxidants, particularly NAC or glutathione and coQ10. The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days the mediators mast cells release can drive a classic ME/CFS relapse.”
“So, take an antihistamine before and for several days after the vaccine – the strongest one you tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice). There are many mast cell stabilizers, watch Dr. Maitlands excellent lecture on our web page from the recent conference we sponsored on the subject if you want to know more: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS https://www.nova.edu/nim/events.html”
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas.
If you have been diagnosed with mast cell activation syndrome it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID vaccines.
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