I self-diagnosed myself earlier this week with shingles. Shingles is caused by the same virus that causes chickenpox. The virus, herpes zoster, stays dormant in the body of those who have had chickenpox and can later develop into outbreaks of shingles. While it’s more common in people over 50, it’s not unheard of to affect people under 50 as well. Once re-activated, the virus attacks nerves and causes a skin rash which is painful.
Shingles is an odd ailment. Can we start with the name? Shingles. I have yet to come across an explanation for this creepy moniker. It’s also referred to as herpes zoster and zona. While shingles is caused by a member of the herpes family of viruses, it’s distinct:
- Herpes Simplex Type 1 – Cold Sores
- Herpes Simplex Type 2 – Genital Herpes
- Herpes Zoster – Chickenpox, Shingles
There are also several additional types of herpes viruses. That’s one kick ass family of viruses, isn’t it?!
At first, I thought the rash was just hives, perhaps caused by a reaction to some red wine I recently had (which I normally don’t drink due to a mild allergic reaction to histamines in red grapes.) But these were no normal hives. They persisted too long. They burned in a way that I haven’t experience with hives. The rash can be relatively pain free, then in an instant cause searing pain, like a match has been raised to your skin. The most identifiable aspect of the rash was the fact that it was only on one side of the body. A shingles rash will never cross your mid line and affect both sides of the body. Rather odd, isn’t it? Not surprisingly, the rash is on my left side—the side of my body that almost always gets the brunt of an injury or illness.
If the payload of shingles was just the rash, painful as it is, I could handle it. But shingles can cause a number of other symptoms, including intense fatigue and weakness, both of which I have. The one that’s really whipping me though is body pain. What I thought was a return of a nagging back/hip injury is actually pain caused by shingles. The pain radiates from my lower right back (the opposite side of where the rash is), around my torso, through my abdomen, and down into my hip. The abdominal pain is weird and disconcerting. It feels like my organs hurt. I can sit and stand with only moderate pain, but laying down and trying to sleep is another story. I have a lot more pain at night and I can’t get comfortable. Sleep is sporadic.
Once I pieced together that I was suffering from shingles, I called my doctor’s office and relayed my symptoms. The doctor felt confident in my diagnosis and advised me to call back if the symptoms had not eased by 3 weeks. If I’d called in within 72 hours of the rash’s appearance, then they may have prescribed an antiviral. I’m glad we didn’t have that chance because I’m wary of pharmaceutical antivirals and vaccines. I did start taking a daily dose of oil of oregano though, a natural antiviral.
1 week and 3 days after symptoms appeared I went to see a TCM doctor. He’s seen lots of cases of shingles, and said they’re on the rise, especially in younger people. Based on his observations, he didn’t think stress was the culprit. Despite calling myself “stressed out,” he said I didn’t show the physiological markers of stress. He also didn’t see any indication that I have unwellness that would compromise my immunity, and said that I appeared to be in very good health. He called my case of shingles “an anomaly.”
Does Testosterone Lower Immunity and Cause Shingles?
No one really knows for certain why herpes zoster stays dormant and what causes it to re-activate, but lowered immunity is certain to play a role. Immuno suppression can be caused by stress. Another cause of reduced immunity is long term use of steroids, such as… testosterone.
An article on the Mayo Clinic website tipped me off to the fact that prolonged use of steroids can weaken the immune system and cause shingles. Is 2 ½ years of testosterone therapy considered “prolonged” steroid use? Could testosterone have contributed to my lowered immunity, and ultimately be the cause of my shingles?
From the looks of it, there’s enough literature out there to suggest that stress and testosterone negatively affect immunity:
Testosterone may impede immunity (November, 2004)
Decreasing testosterone boosts immunity because testosterone helps control T-lymphocytes, the attack cells of the immune system, according to Mayo Clinic-led research in laboratory animals.
This theory is not without opposition though:
Testosterone, Stress May Not Suppress Immune System After All (October, 1999)
“…Braude came across a new body of research — about a dozen studies in all over the past five years — that questions the whole idea of immunosuppression and suggests that, instead of suppressing the immune system, testosterone and other steroids play a key role in what’s called immunoredistribution.”
Out of curiosity, I pulled out my blood work lab reports just to see if they could offer up any clues. In particular, I looked at the hematology numbers for WBC (white blood cells) and lymphocytes. My WBC is perfectly normal throughout all the reports, while my lymphocytes are low across the board, but still in range. (A low normal to low absolute lymphocyte concentration is associated with increased rates of infection after surgery or trauma. Indeed, my lymphocyte count over the past few years was at its lowest after my hysterectomy when I was dealing with the VVF complication. I did manage to avoid post-op infections though.)
My TCM doctor performed some acupuncture to help lessen my body pain. He put about 10 needles in around the hot spots of the rash. “Surrounding the Dragon,” he called it. He also prescribed Banlangen tablets, a Chinese antiviral formulation that’s ideal for clearing “toxic heat.” Coming from humble folk origins, Banlangen is a combination of Radix Isatidis root, Herba Violae, and Herba taraxaci (Dandelion.) It’s become one of the most popular herbal beverages in China—a staple in every household—due to renewed concerns about immunity stemming from the SARS outbreak. I’m taking 6 Banlangen tablets three times a day. They have that intense earth/root scent of medicinal herbs, mixed with a flowery aroma. Distinctively non-Western.
In addition to the Banlangen, I’m taking 6-8 ibuprofen a day for pain, a small dose of oil of oregano daily, and have more acupuncture scheduled for Tuesday. I may look into getting some Lysine. Apparently, it prevents the absorption of arginine which the shingles-causing virus needs to stay active, and can produce almost immediate improvement of symptoms.
Preventing Shingles
Unlike chickenpox, shingles can come back. The key to preventing their return is keeping your immunity up. It’s unclear whether or not testosterone has anything to do with my lowered immunity, but it makes sense for me to look into supplements that can boost my immune system. There are a number of adaptogenic herbs and fungi that fit the bill:
- He Shou Wu
- Eleuthro (Siberian Ginseng)
- Panax Ginseng
- Ashwagandha
- Maca Root
- Reishi mushrooms
- Cordyceps
Of these, He Shou Wu and Eleuthro are recommended tonics for trans guys. Other supplements to boost immunity are vitamin D, which modulates immune function, and Zinc, which stimulates the synthesis of white blood cells and directly supports T-lymphocytes. Also, I can always eat more broccoli! It’s one of my favourite vegetables, and it contains Indole-3-Carbinol (I3C), which protects against the herpes family of viruses.
There is a shingles vaccine. However, it’s not recommended for people on steroid therapy, it’s about 50% effective and lasts about 6 years.
I’m curious about whether other trans men on testosterone have experienced shingles and/or have otherwise noticed decreased immunity? Please leave your comments below.
Gender Outlaw 
I have read the medical theory that this same testosterone-mediated effect of immune system control could be responsible for the dramatically lower incidence of AUTO-immunity in men. Men suffer from Multiple Sclerosis, Lupus, and Rheumatoid Arthritis at far lower rates than women(http://en.wikipedia.org/wiki/Autoimmunity), and suffer from only a few such disorders at larger rates than women.
I personally would rather have the risk of an occasional infection versus a lifelong autoimmune disorder, but the grass is always greener on the other side.
Regardless, I hope that your shingles attack turns out to be relatively mild and that the TCM holds it at bay.
I’ve been on T for just over two years. Last December (the 7th to be precise), I hit the right side of my head with my car door — really hard. After a day or so of excruciating pain, I went to our local doctor, who misdiagnosed me and sent me for a cat scan. I mentioned these small bumps on my head and then I was diagnosed with shingles. Unfortunately, too late. The pain was what I imagined it would be like to be tasered. After a few months, the shingles disappeared and now almost a year later I have post herpetic neuralgia (damaged nerves). I’ve been on Gabopentin and Lyrica for almost a year. The pain is now a random zapping in my right ear and right side of head (my side which gets the brunt of injuries, too, I might add). For the last eight months, it feels like a ferret is hanging on the side of my head with its claws stuck in my scalp. Doesn’t like the rain which is perfect for the wet coast. I have my ups and downs. Not depressed, just irritable and impatient. I am apparently an anomoly as well, as I am not in the older range. There are people in the community that have had it for 15 years, 10, five … I am not keen on taking all the pharmaceuticals for the rest of my life so am looking at alternative medicine.
@Elisa Yes, I came across some of that research about testosterone and auto immune disorders. I’m particularly interested in it as I have Lupus in my family.
As for the shingles, my symptoms have improved since seeing the TCM.
@Alex Sorry to hear that you’re still suffering from neuralgia. It seems to be random who it hits after a shingles outbreak, 1 in 5 I think the stat is. I haven’t looked into alt therapies that alleviate or get rid of PHN, but I imagine acupuncture could provide some relief. I’ll be interested in what you uncover!
I’ve been on T since March of 2009, and I have largely experienced improvement of my auto-immune issues. Small things like my reactions to misquito bites are less severe, my food allergies have abated, and my arthritis is much better. I’ve also caught fewer colds/viruses, but that seems hard to nail on t, given changing exposure.
That’s awesome, Theo. Great to hear! Since I originally wrote this post, I had another autoimmune-like episode. I think these ailments have been triggered by stress. I did a lot of research into autoimmune disorders and it sounds like E is the hormone that tends to be problematic in this regard. There have even been some marginal successes treating autoimmune disorders with testosterone. Good to know I’m running on the “right” juice.
My immune system is considerably stronger since I started taking T in May of last year. It could also just be because I am far happier since that date, and I started a wonderful relationship with a supportive partner. All I know is that I haven’t had a cold since last winter or so, which is a personal record for me. I also used to have frequent sore throats, allergic reactions (my hay fever symptoms were also much milder than usual last summer) and overall fatigue – especially around my period. I wonder if the fact that my period has stopped as a result of T also has something to do with this.
By the way, I’ve been taking Cordyceps since last November and I think it is boosting my immune system as well.
Thanks for that, Damien. I haven’t had a cold since starting T either, but I credit that with my lack of contact with carriers… um, I mean people 😉 Seriously, I’m close to being a bubble boy I get out so infrequently around others. I did have another episode of rather odd auto immune symptoms last year, and I’ve chalked it up to stress (my blood work showed me to be in perfect health.) I’ve heard great things about cordyceps and imagine that’s contributing to your heightened immunity. I should look into getting some, I think my pharmacist makes an extract.
Oh and bleeding definitely saps energy so it’s logical to assume that with cessation, that energy can be applied elsewhere, such as boosting immunity.
I started T about a year ago and switched to pellets. My first round seemed to go fine but immediately following the 2nd insertion on my right buttocks I had a weird twinge on my right side. This came and went but something felt ‘off’. I started having abdomen pin as well so reached out to my Gastro dr and asked if there was any negative correlation between t pellets and this discomfort/pain. He wasn’t aware of any. A few weeks later I was diagnosed with diverticulitis. Was put on cipro and I had some major neuropathic issues so they took me off after 5 days. Two weeks later started feeling burn on my right side (same side as t pellets) and it felt similar to the original discomfort after the pellet insertion. But it kept getting worse and then felt similar to the reaction to the cipro. After a third CT scan they confirmed it was NOT my diverticulitis returning (which I thought it may be) Lo and behold it is shingles. I’m one week in and on an antiviral. The rash is already subsiding but the nerve pain and burn/ache is still awful. I’m praying I don’t have any long lasting effects from this. My gut seems to be affected as well which ones in to the diverticulitis issues it all began with. I don’t know if it’s all related and I have no way of knowing if the t pellets played a role in any of this. However, I do not plan on getting any more. My levels were 260 which is why I started the therapy and I’ve been at 800-1000 the past year. However, I’ve also been sicker this last year than I have been in my life, so I don’t think it’s worth it. Thanks for posting this. At least makes me feel like I’m not crazy to think there is a correlation.
Jason, I’m sorry to hear what you’ve been through! I hope everything improves now that you’ve got a diagnosis and treatment. If it’s any consolation, I’ve had shingles return since this post, as recently as last fall, and have not had any lingering effects from it. Get better soon!
Not a trans man but I have been on T therapy for two years now and last year I developed a case of shingles that almost killed me. It ended up getting disseminated in my blood stream and I needed up with Myocarditis (swelling of the heart muscle). Curious if anyone has had this same
Condition
Dave,
Same situation with me, almost died from shingles. Would be very interested to contact you.
On trt for three months and shingles since one weekend, 43 yrs old and stressful life. I think the trt is part of it, maybe cause it has let me train very hard or maybe linked to my high red cell count.
I was taking testosterone cypinate injection s. Had three..2 weeks later. I’ve got shingles full bloom…I’m in day 5.. Taking the voltrax virus tabs6xs a7a day and I had the vaccination.shot.Today I’m healing up scared over and a lot less pain. Ice packs work taking fish oil and antiflamatory every 3 hours…bananas..peaches..yogurt…helps.