Symptoms
My year with Disseminated Zoster ended with the Shingrex vaccine and a diet that is changing my life. Disseminated Zoster is the shingles virus but instead of following a single nerve, it is systemic, all over the body.
Thyroid Symptoms
In January 2019 my left thyroid gland was tender to the touch. By the end of February, the gland was a visible lump. A sonogram confirmed the swelling, a biopsy came back negative, but it felt like a nail was projecting into my throat. The ENT doctor saw a mild sore throat and gave me an antibiotic, which did shrink the left thyroid but then the nodules in my right thyroid began to swell. I got a UTI at the same time and while the UTI was resistant to the 1st antibiotic, the 2nd UTI antibiotic seemed to have the effect of shrinking the nodules on the right (but not until April). None of this could be explained by anyone.
Rash Symptoms
There were large hard pimples on my chin during the entire month of February followed by “pimples” that popped on my head, neck and in my ears. By the end of March, I had clusters on my torso, breasts, and back. The doctors kept insisting the sinus congestion, night sweats and fatigue were just allergies. My resting heart rate peaked at 96 bpm in mid-March (normal was mid 70’s bpm). Finally, my Endocrinologist suggested I see a Dermatologist and ask them to test for Disseminated Zoster. She had one other patient who was on Taltz that also developed Disseminated Zoster and her rash looked very similar to mine (I stopped Taltz after my February dose). My rash did not look like a typical shingles rash, but more like chickenpox. The biopsy came back positive for Disseminated Zoster. Finally, a diagnosis!
Body Symptoms
The fatigue, muscle, and joint aches were the worst part of this. I was exhausted and could not muster the energy to do much of anything. This was supposed to be my year to get in shape after surgery on both feet in 2018 but nothing could be further from the truth. I could barely push myself through a day. By May I was coming to terms with the possibility that I might be living with Disseminated Zoster for the rest of my life. My endocrinologist had another patient who did that and stayed on the anti-virals permanently.
A rare diagnosis
Disseminated Zoster is rare, typically only in severely immunocompromised people, so they next checked for HIV infection. Most people with Disseminated Zoster are hospitalized. It just isn’t normal to walk around with this disease and try to do life, but that is what I was doing. April 10th, I started a 10-day valacyclovir prescription, which cleared the rash briefly before it returned, and I had to restart the anti-virals.
Stress Reduction
In June I started a regular meditation practice as an attempt to destress and to settle my mind and come to terms with my new reality. I discovered a few new homeopathic and natural treatments through an infectious disease doctor and by digging very deep at online resources, specifically Life Extension. To find their recommendations related to a specific disease you have to search for the disease and then go the section “News and Protocols”. I clicked on “Herpes and Shingles” and under the “Table of Contents” there are sections for “Novel and Emerging Treatments”, “Dietary and Lifestyle Considerations” and “Targeted Natural Interventions”. Each of these sections has some hidden gems.
I kept a detailed log of my symptoms and the medications I tried. This process taught me to advocate for myself and manage my own records because I saw so many doctors and none of them coordinated with the others.
Candida
There were two spots under my breast on my bra line that would not go away and eventually got infected. I was trying everything under the sun, including draining and bandaging them each night. The rash around these two infected spots became a red raised rash that looked more like a typical shingles rash (to me). When I saw the infectious disease doctor in early July he said: “You may have the world’s worst candida overgrowth.” I started on oral Clotrimazole lozenges, Fluconazole, Clotrimazole/Betamethasone cream and Nyamyc powder under my breasts. I started feeling better within days of starting those medications. I was on the mend and started reducing my valcyclovir dosage. But they wouldn’t let me get off it yet.
Lichen Planus
I also had one small ulcer on my vagina that I remember noticing after sex was painful in March. I just assumed it was another zoster bump that presented differently because of the type of skin involved. But it did not go away after all the other spots cleared up. The infectious disease doctor wanted it gone before I could get my shingles vaccine. After an inconclusive shave biopsy in May, a punch biopsy that ruled out lichen sclerosis, and a Gynecologic Oncologist that wanted to cut it out I was motivated to seek a 2nd opinion. The 2nd dermatologist did ANOTHER punch biopsy and this time it came back positive for Lichen Planus, another autoimmune disorder. The first 3 biopsies probably did not grab the “edge” of the lichen planus, which is needed to get an accurate diagnosis. I spent over $2,000 on inconclusive biopsies with my first dermatologist! There is no cure for lichen planus, just topical creams to keep it at bay, some of which are steroid-based and create more problems than they are worth.
The last straw
The rash flared in early October. I increased my valcyclovir dosage, which pushed back the rash, but the flu symptoms did not go away. The fatigue, night sweats, and sinus congestion were the worst part of this disease. The rash flared again 2 weeks later, and my GP told me to get another biopsy because he “never believed this was zoster”. And this time the biopsy came back negative for zoster. I was at a place where I was going to completely STOP the valcyclovir so that my doctors would have to deal with me. As long as the rash was at bay, they thought they’d done their job. But the rash was only an outward sign of what was going on inside my body. The flu-like symptoms never really went away, they just got better or worse throughout the year.
Shingrex Vaccine
Finally, my Rheumatologist was bold enough to read the CDC vaccine recommendations and she said if I did not have an active zoster blister that I could get the vaccine. I got my first vaccine on October 21st. The shot hurt, but at the time, I don’t remember thinking it made me feel flu-like. That evening I inadvertently sat in one position for a long time and when I finally moved, my arm felt like it was stuck, and it was very sore. That was the worst part of my first dose. BUT it is important to remember that I had been feeling flu-like since February. So, it is possible that I had symptoms but they were not all that different from my normal day-to-day symptoms.
I skipped an early Christmas celebration to get my 2nd Shringrex vaccine on December 23rd! This 2nd dose validated my flu-like symptoms over the last year. My arm was sore and feverish, not just one day but 2 days. I experienced extreme muscle fatigue all over my body. It was most noticeable in my knees, which had never been a problem joint for me, but had become a problem joint while struggling with Disseminated Zoster.
Shingrex Validates Symptoms
My knees had slowly improved since starting my fast and strict diet in November (see below), but because it was a slow improvement, I didn’t even realize how much better they were until I had this jolt back to the disease. My hands and wrists hurt, especially in the morning. In many ways, the shingles virus mimics Psoriatic Arthritis. Everything was worse in the morning. When I first got out of bed, I could barely walk into the bathroom without grabbing a wall. The most remarkable symptom was profound muscle fatigue. Every muscle felt like I had worked out to exhaustion and had nothing left. If I needed to lift something, it was like the muscles would not engage to lift it. I had to lean on the counter or on my legs if I was bending over. And my brain must have been swollen or inflamed as well. I would start to do something, stop halfway through, or turn around to get something but then not grab it and return to my task and repeat. It was frustrating, but in some ways, it was the most validating experience of this whole year. All the symptoms that I have felt this entire year were real, were shingles symptoms and were as bad as I thought.
5-day Fast and 21-day Elimination Diet
Throughout this ordeal, I was logging my diet, symptoms, and supplements. I stopped alcohol in August to see if that was weakening me and it had almost no effect. What shocked me was that I didn’t lose any weight!
By November, when I was told that the last rash biopsy was NOT Disseminated Zoster I was at my wit’s end. I walked into a Functional Medicine doctor and signed up for an extreme elimination diet that would change my world. The 5-day fast and strict 21-day diet is another story!
I spent nine months of 2019 living with Disseminated Zoster. The 5-day fast, 21-day elimination diet and gradual reintroduction of foods taught me so much about my body. I have a new respect for the incredible healing powers we have within us. Now I am refining what I must do for my body to allow it to continue to not only heal from Disseminated Zoster but actually reverse my Psoriatic Arthritis and Psoriasis. I am getting stronger each day that I exercise and eat foods that heal my body. Thank you, God!