Yuka was 13 years old when she received the first dose of Gardasil, the HPV vaccine. Prior to the vaccine she was healthy. Her mother describes her as slim, pale, and of average physical strength. She had dry skin and was sensitive to smell but no other ailments. She had never had influenza even when another family member had it. Yuka enjoys drawing pictures, playing music and spends most of her time indoors. She had all infant vaccinations under Japanese government program, but never had optional vaccines such as influenza. She had her first Gardasil shot in August 2012 on her left shoulder, the second shot October 2012 on her right shoulder, and the third shot February 2013 on her left shoulder again.
HPV Vaccine Symptom Chronology
August 2012: Yuka often complained shoulder stiffness. We laughed that she was playing the guitar too much, and I gave shoulder massage to her. She started to take a nap during day, but I thought that it was due to heat in summer.
December 2012: a large number of viral warts occurred on extremities. They were treated by a dermatologist with liquid nitrogen treatment and soon completely cured.
February 2013: Yuka had frostbite on the feet for the first time in her life. The winter was not particularly cold. It was completely cured in three weeks with an ointment and by keeping warm.
May 2013: Yuka had an accident and inured the right eye. She was a member of a Japanese archery club in school, and one day when she was walking with an arrow in her hand, the arrow accidentally hit a wall and it reacted toward her face. She could have stopped the arrow moving toward the face if she had enough grip strength, but unfortunately the arrow slipped through her gripped hand and hit her eye. She had stitches on the bulbar conjunctiva, and the injury was completely cured in one month. I later began to suspect that the injury might be caused by muscle weakness in her hand.
First Hospital Visit Post HPV Vaccine
Sometime in July, I noticed Yuka’s lymph node swelling on the left neck and trapezius muscle swelling on both shoulders, with the left side more swollen than the right. Yuka complained that the shoulders were a little aching. There were no redness or fever. We decided to seek a diagnosis and took her to the hospital.
July 2013: First visit to hospital for the swollen lymph node and shoulders. Her alkaline phosphatase (ALP) test came back very high at 446 IU/L. Since she was growing and so the doctors did not pay much attention to this value. This value has been high throughout. Other lab tests included: Ferritin (Fe) – 52.8 ng/mL, white blood cell count (WBC) – 4670 (she has never been measured for this value before, but her mother has a low value of about 4000), platelet count (PLC_ – 160,000 mcL, blood sugar – 70 mg/dL (about 3 hours after meal), C Reactive Protein (CRP) – 0, hemoglobin 14.5 g/dL, differential leukocyte count normal.
An MRI of her shoulder and neck with contrast agent was completed. The results showed that there was one swollen lymph node with a diameter of about 1.8 cm on the left neck, close to shoulder blade, and there were a large number of swollen lymph nodes with a diameter of about 5 mm on the neck. The trapezius muscle did not appear inflamed on the MRI so the cause of her shoulder pain remained unrecognized.
Second Visit to Hospital Post HPV Vaccine: Additional Tests
Echo test for the neck to the shoulder was negative, like the MRI. A second set of blood tests revealed:
- WBC 3410
- Fe 93
- Blood sugar (2 hours after meal) 85
- CPK 39
- IgG 1658
- Antinuclear antibody was normal.
She was diagnosed with Complex Regional Pain Syndrome, chronic fatigue syndrome, and fibromyalgia. Yuka was prescribed Myonal and Neurotropin and told to come back in one month. The swollen lymph nodes disappeared, but when we came back from a holiday, swelling in both shoulders increased, and symptoms such as fatigue, headache, double vision, light sensitivity, hip joint pain, knee pain, difficulty moving her hands, and muscle weakness in lower extremities occurred. Although she was diagnosed as fibromyalgia and since she did not have fever but had swollen lymph nodes, we suspected that she was reacting to a foreign body. Then we suspected that it might be due to the HPV vaccine.
Third Visit to Hospital Post HPV Vaccine
September 2013: This visit was follow-up to the previous visit and further tests. Yuka had a head MRI and EEG. Both tests were normal. The additional blood tests showed continued low white blood cell counts, WBC 3700. She was tested for amylase, a marker of pancreatic function. The results were high at 146 U/L. Her blood sugar was 86 mg/dL (2 hours after meal). Her creatine kinase (CK) was 42 U/L and creatinine 0.40 mg/dL, low. Other values were normal.
A doctor suspected peripheral neuropathy due to the HPV vaccine. The doctor said that since there was no inflammation, the acute phase had passed, continuing daily activities would help rehabilitation, and she would recover.
Fourth Hospital Visit Post HPV Vaccine: Cerebellar Ataxia
September to October 2013. This visit was also follow-up to the previous visit and further tests. By this point, Yuka had gained weight. She wanted to eat something sweet and salty. Her appetite increased. She also had fatigue and headaches, was experiencing difficulty walking. She could not maintain balance while standing with her feet together. I noticed that Yuka had ataxia. She also had swelling on her face.
She was diagnosed with cerebellar ataxia, but was told that she would recover since there was no inflammation and the acute phase has passed. She was also told that since the functional disorder was mild she would almost completely recover. However, I felt that the symptoms were gradually worsening.
Test results: There was no abnormality in electromyogram. In the blood test, the values of WBC, CK, and creatinine decreased slightly, pyruvic acid was normal, metabolism of sugar, fat and protein was normal. She started fursultiamine supplement together with other vitamin Bs and magnesium. (These supplements were started after reading Dr. Lonsdale’s articles.)
Fifth Hospital Visit Post HPV Vaccine
October to November 2013. We went to the neurological department, Kagoshima University Hospital. This visit was due to her symptoms worsening. She needed to see a specialist of immunology and encephalitis.
We suspected immune-mediated encephalitis, and visited this hospital, which has a research institute. Around this time, this hospital was designated as one of hospitals for the treatment of HPV vaccine injured.
There were no abnormality in blood test and thyroid function (tested only FT4 and TSH), catecholamine 3F normal, vitamins normal (probably due to supplements), the values of WBC, CK and creatinine were still low, amylase 166, CMV-IgG 41, Head MRI normal, CBF (SPECT) normal.
The doctor was convinced by seeing swollen shoulders that the cause was HPV vaccine; although there was no significant decrease in blood flow in SPECT. Since there were reports about symptoms like a collagen disease due to an immunostimulation reaction caused by HPV vaccines, we were told that Yuka would have a steroid pulse therapy. She also had clear symptoms of cerebellar ataxia.
After one course of the steroid pulse treatment, symptoms due to cerebellar ataxia and headache disappeared, but there was no change in the shoulder. Immediately after the pulse treatment, she complained pain in the whole body and strong headache.
December 2013: Fatigue and swelling in the shoulders almost disappeared. Her WBC decreased to 2200. There was one onset of hyperventilation and visited ER in Kagoshima University Hospital and subjected to arterial blood gas test. The blood test results at the time of hyperventilation showed there were decreases in phosphorous (P), postassium (K), magnesium (Mg), and ferritin( Fe).
She also had some blood tests and the results were as follows: monocyte 11.8 H, neutrophil 41.8 L, and WBC – leukocyte 2870L. This was one month after the steroid pulse.
January 2014: Yuka began taking an iron supplement, (Fe 20, Ferritin 44). Her iron levels increased to (Fe 65, Ferritin 21.1) after taking the supplement. There was recovery for WBC to 4900 and her platelet count increased to 192,000. She continued to take fursultiamine (Shionogi & Co., Ltd., Verix, neo).
April 2014: Her period stopped.
May 2014: As the symptoms seemed to subside, she stopped taking supplements.
June 2014: She became mentally unstable and irritable. Her character has changed. We wonder if her brain is affected to some extent.
September 2014: Yuka has started to have fatigue, and visited the hospital. There was decrease in WBC 3200 and PLT 130,000, and with the results of Fe 36 and Ferritin 48.9, she has started to take an iron supplement again. Thyroid function was normal (FT 41.1, TSH 1.6, TSH receptor antibody normal). She is also taking Chlorella, zinc, magnesium, and fursultiamine.
Since the beginning of August, Yuka is taking Kamishoyosan-based Chinese medicine called, whose efficacy includes premenstrual syndrome, dysmenorrhea, irregular menstruation, menopausal syndrome, chronic hepatitis, liver cirrhosis(early stage), chronic gastritis, irritable bowel syndrome, anxiety disorder, insomnia, hand and finger dermatitis, etc.
Around July 2014, her nails started to show white raised vertical lines. We worried that she might be lack of zinc, and she started to east oysters a lot, but from August Yuka asked to have zinc supplements instead of eating oysters. We thought the loss of period might be due to zinc deficiency and Yuka was also worrying about hair loss possibility. We wonder, which is better for zinc deficiency eating oysters or taking supplements?
Most Recent Blood Work Post HPV Vaccine
- TSH receptor antibody （－） binding inhibition rate 3.8%,
- Thyroid test (Thyroglobulin antibody by passive agglutination) LT100
- Microsomal test (Anti thyroid microsomal antibody) LT100
- Anti-TG antibody LT 10.0
- TPOAB LT5.0
- Thyroid globulin 6.7
- TSH 1.6
- FT4 1.1
One Year Post HPV Vaccine
Last summer when Yuka first became ill, she was suspected to have the Kikuchi disease. After most of her symptoms had disappeared around early this year, her health started to deteriorate again this spring, and this time the symptoms like those of the Kikuchi disease seemed to reappear.
There have been two cases of the Kikuchi disease after HPV vaccine in Japan, and one of which has been reported in the literature.
Yuka has a sister (15 years old), who also had Gardasil at the same time. She also had swelling and hypesthesia on the right face around the same time as Yuka had. Yuka’s sister loves sports and plays tennis outdoor, and is suntanned through the year. She had a severe acne, and was taking an antibiotics (several of two week courses) and Vitamin Bs when she had Gardasil. Yuka’s sister did not have any further symptoms due to Gardasil. We wonder if the antibiotics helped or Vitamin Bs helped Yuka’s sister or maybe even the Vitamin D formed by being outdoors. Both of the girls still have swelling on their faces, but no hypesthesia (diminished capacity for sensation).
Postscript: This article was written originally in Japanese by Yuka’s mom and translated to English by Madoka Hazuki.
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