My Story as a Botulism Survivor: A Rare Disease That Caused Muscle Paralysis

I was a former PC in three different pharmaceutical companies and spent the last year as a BSL in Roche. I was trained to understand the monoclonal antibody for cancer and how to present the information to the doctor. I had, several times, met inpatient people who were lying on the bed, talked to their families, and tried to spread sparks for them. At that time, I felt their sadness, but never fully understood.

Several years after, I knew how fragile they were as I found myself lying on the hospital bed and became a patient for 31 days. I was given an antibody infusion to neutralize the toxin inside my body and received not only medical and nursing support, but also physician care.

Surely, life is full of surprises.

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It all starts here…

Thirteenth of September was supposed to be a special day for us, as it was my husband’s birthday. Actually, we don’t celebrate it. It was only because he turned 30 this year, so I had an idea to make a feast by cooking his favorite food I had never made for him: Sate Padang.

I cooked in the afternoon for dinner time. Right after I finished preparing the meals, I felt something uncomfortable inside my belly. I considered it was just ‘masuk angin’.

When dinner time comes, I was sweating and the cramp was getting worse. But still, I finished the meal because that was our special moment. An hour after, I got nausea and vomit. All the meals came out. In just 3 hours, I got vomit twice. 

Two days after, I had a mild sore throat. But it was not a common sore throat when you got flu or cold. It was more like suffocating until it was hard to swallow. Every time I drink, the water runs out from the nose. Since that day, it was hard for me to eat and drink.

The next day, my vision started to blur and I realized the eyelids were drooping.

Five days after the vomit, I went to the clinic. The doctor said I had pharyngitis and he prescribed antibiotics. He checked my eyes and the result was good. Nothing to worry about, he said.

The symptoms I had…

Day by day, the symptoms were getting worse:

• More drooping eyelids
• More blurred vision
• More difficult to swallow and speak
• Dry mouth
• Short of breathing
• Weakness all over the body  (I should move my arms and legs slowly)

I tried to keep believing on the diagnose that sensei had told me, also words from my husband. But still, i felt something bad happened inside my body. I am alone here and no powers. What should I do beside waiting for help?

Call the ambulance…

A week after vomiting, I find myself very sluggish until I couldn’t raise my baby. A few minutes later, my breath was getting shorter. I realized something serious had happened inside my body, so I called a friend to help me take care of the children.

Then, she came to my house and shortly called the ambulance as she found myself very weak. She called my husband’s office and asked the supervisor to allow my husband to come home. Right after that, my husband accompanied me in the ambulance and we went to the hospital.

As we arrived, the nurses immediately put me in the CT-Scan and checked all of my symptoms. I was lying in the emergency room (ER) for about 5 hours and spent 2 infusion bags as they found me dehydration. The result of the scan turned out: I can swallow and nothing wrong inside my throat. So the doctor (sensei) diagnosed me with pharyngitis, prescribed the medicines, and allowed me to come home.

All the medicines were tablets. That was truly horrible. How can I consume all of them when I hardly drink even water?

I tried… to drink medicines every day, though the tablets always stuck in my throat. I was so exhausted to even drink and eat.

In the Emergency Room…

Three days later, I went to the hospital again for the regular check up. As I arrived in the hospital, I got a fever and shortness of breathing. The nurse realized something serious had happened, so she straightly led me to the ER and put oxygen.

Instantly, I could breathe normally again. They took blood samples several times, not only in both of my arms but also on my leg. I also had an IV infusion and a CT Scan.

An hour later, they finally realized the pharyngitis was not my primary disease, it was just a symptom. As they found muscle weakness throughout my face and body, they assumed something bad happened on my nervous system. So they called neurologist and he checked my ability to move legs, arms, eyes and neck. It was true, I had nerve disease.

“It might be Myasthenia Gravis, but we have to make sure of it. You must stay in the hospital with intensive treatment (nyuuin) for 3-4 weeks.”

Three to four weeks?! 

Speechless. That words hit me. I straightly stared at my husband and he seemed shocked as I did. What a long treatment. Who will take care of my children?

Undoubtedly, my mind was full of worry about everything: myself, my kids, my husband, and precisely the treatment cost. A month in the hospital?

Definitely, it would break the bank.

In the Critical Care Unit…

In the ER, the nurse inserted a long swab through the nasal cavity for a few seconds. They must conducted the PCR Test for me to make sure that I was free from COVID-19. Before the result came out, I must had been staying in the isolation room of CCU (Critical Care Unit).

Since that day, I had IV infusion for rehydration and pneumonia (antibiotics). The nurse in charge (tantou) also put some cables on my chest and stomach to detect the pulse rate + SpO2. She regularly took my blood sample, checked the blood pressure, sugar blood, temperature, and eye movements. The sensei checked the progress and the muscle strength twice a day. 

I was so weak. Even to go to the toilet, I called the nurse. She put me in the wheelchair and brought me to the toilet. Since the first day, sensei was not allowed me to drink, only gargle. I had a severe headache. Also, I couldn’t take out the mucus by myself, so the nurse must do a suction. Imagine that. 

New diagnosis (Botulism) and an immediate treatment…

A day after, the result of the PCR test came out. I was free from COVID-19, so they moved me to another room in the CCU. On this day, I had an EMG test to check whether I have Myasthenia Gravis (MG) or not. In the evening, the director of the Neurology Department of Rosai came to me and explained the diagnosis. 

“We found another suspect of your disease. It might be MG, but the symptoms are more likely to Botulism. Do you know that?” 

I had never heard that. He then explained that maybe, I was infected by the bacteria called Botulinum. The bacteria released the deadly toxin that attacked my nervous system. All the symptoms I had was similar to Botulism.

Then, the nurse took another blood sample and stool (feces) to check the bacteria. Because the test would take a long time, the sensei must do a quick treatment without waiting for the result in order to avoid a wider exposure. Then, he ordered the Botulinum Antitoxin infusion immediately. 

An hour later, the nurse placed a drip on my other side hand for the antitoxin. Yes, I had an IV infusion on both of my hands. It was quite scary, isn’t it?

The picture above was taken on the 4th day of treatment, two days after Antitoxin infusion. As you can see, the eyelids were still drooping, but somehow it was better than previously. The antitoxin was effective, alhamdulillah. 

PS : I am sorry for the poor editing. I need to overlay it because the hair covered my forehead.

The examinations…

You might be wondering, what kind of examinations I received in one month-inpatient?

1. CT-Scan

I experienced CT-Scan four times and the last one they gave me an injection into a vein in the arm immediately before the scan. This is a clear liquid called Intravenous X-Ray Contrast, which shows up parts of the body that not always clearly seen. It caused a temporary mild sensation of warmth in my body.

2. MRI

It might be the most fearful test I’ve ever done. Before conducted MRI on my head for 15 minutes, they gave me earplugs, and closed my head with a helmet when I had been lying on the bed machine. I must detain myself from the very loud sound (just like a rock concert) and narrow room. I thought myself experienced claustrophobia at that time.

3. PCR Test

Before nyuuin (inpatient), sensei ordered a PCR test to make sure that I was free from COVID-19. Alhamdulillah the result was negative. 

4. EMG

I had an EMG test twice. This diagnostic procedure detects the health of muscles and the nerve cells. It was quite painful because they put some electrodes on my arms, legs, and fingers.

5. Pulmonary Function Test

To detect my breathing skills, they conducted a respiratory test twice (along and after the treatment). I must breathe throughout the tube normally, then they asked me to breathe in and out deeply so they can measure my breathiness is short or not.

6. Nasal Endoscopy

This is a procedure to assess my ability to swallow. The otolaryngologist inserted a flexible tube with a camera and light through one of my nostrils. I experienced the test twice, and the last one they added water, sticky water, and jelly for me to drink. The test did not hurt, but I felt discomfort until I teared up unconsciously.

7. Venous Ultrasound

This procedure is performed to evaluate symptoms such as leg pain, shortness of breath, or suspected blood clots in my legs or lungs. They applied a warm gel and an ultrasound device on my legs to examine the arteries inside.

8. Tensilon Test

The doctor injected a liquid called Tensilon (Edrophonium) that results, in a sudden, temporary improvement in muscle strength. This test was conducted to indicate whether the patient has Myasthenia Gravis or not. In my case, the eyelids suddenly lifted up for just a moment after the injection. Therefore, the initial diagnosis of my disease was Myasthenia Gravis. 

The Diagnose and Inspection of Bacteria…

“We can’t detect Botulinum bacteria in your blood and feces because the sample was taken 14 days after you vomit. However, the Antitoxin was effective. So, maybe the diagnosis is Botulism.”

Maku sensei, the neurologist, said the final diagnosis of my disease on the last week of treatment. Actually, they were still doubtful about it as they couldn’t find the bacteria inside my body, or find the suspect food to do more laboratory tests.

Botulism is a rare disease, especially here in Japan. Since I was diagnosed with Botulism, it attracted the attention of the officials, from the Director of Neurology of Rosai Hospital to The Health and Medical Center of Yokohama.

“Did you eat honey recently?”

“Yes, I eat yogurt with honey almost every day”

“Is it the same honey?”

“Yes”

“Would you please write down the foods you ate in the past three weeks?”

“Sure”

Straightly, I wrote the food list, from the meat and veggies to the spices and consomme. Then, one of the foods caught sensei’s attention.

“What is it?”

I explained about the suspected food, from how I got it to store it. Still, I was not sure because my husband ate that food too. Maybe I consumed that food when I was not quite fit. In order to find other foods that might be suspicious, a government officer from Kuyakusho (town hall) came to my apato (apartment) to check and capture all the packaged foods including seasonings.

Two weeks later, the officers from The Health and Medical Center of Yokohama came to the hospital and asked me some questions about the food. They hold papers and some of them were pictures of the foods from my apato. I realized that my disease was quite hyped here in Yokohama. I straightly became a well-known patient because of Botulism.

The nutrition…

Botulism is a rare but serious disease caused by deadly toxins from Clostridium Botulinum. All of the symptoms are the result of nerve paralysis during exposure to the toxin. The fatal cases are the paralysis in the respiratory system that may cause sudden death.

On the day when I went to the hospital for the first time, I had shortness of breathing. Fortunately, a friend of mine suddenly called the ambulance after she had realized that my condition was serious. If she didn’t come and call the ambulance, I might have a respiratory failure. Alhamdulillah, I am so lucky for having family and friends who support me. I also had proper medical treatment, immediately, so the paralysis was not getting worse.

Patients of Botulism usually require hospitalization for a prolonged time. As you know, I stayed in the hospital for 31 days. I spent half of the days ‘eating’ but not orally. I had the nutrition from IV infusion since the 1st day and NGT since the 5th day.

At the beginning of nyuuin (inpatient), sensei was not allowed me to drink and eat. I received solution from IV injection for 7 days, added by nutrition through NGT for 10 days. It counted 13 days I eat not orally. I remembered, on the 8th of nyuuin, I can drink water in a small count. I straightly did sujud syukur (prostration) and cried for He had allowed me to drink again without coughing. Alhamdulillah.

Several days after, they conducted a swallow test. The result was good, I can swallow again. Then, sensei told me to eat paced food (similar to 6 months old baby foods). The speech therapist accompanied me because that was my first meal after 2 weeks. I just ate half of the meal because I was exhausted to swallow. Luckily, a day after, I ate them all.

After the NGT was taken out, they added the food texture to porridge (okayu), chopped egg/fish, and boiled-chopped veggies. Finally, on the 19th day, I ate normal food again. I was so happy I could bite again, mashallah.

The medicines…

Four days after the IV injection of Botulinum Antitoxin, I still had a weakness, hard to swallow, and blurred vision (dropping eyelids also). It happened because the antitoxin cannot improve the muscle weakness which is caused by the toxin. Therefore, sensei prescribed medicine to strengthen the muscle power, not only for the eyes and throat but also for others that had been exposed to the toxin.

The name of the medicine is Mestinon (メスチノン). It is used to treat patients with MG disease. As I’ve told you before, the initial diagnosis of my disease was Myasthenia Gravis. However, further examinations stated that MG was not my disease. There was another one that had similar symptoms to MG, which was Botulism.

The first time, I took the medicine through NGT for a week. After sensei allowed me to eat, I could take the Mestinon tablet orally, 3 times a day. After two weeks, sensei started to decrease the dose twice a day for a week, and once a day for two days. Finally, on the 28th of treatment, I stopped taking Mestinon.

Alhamdulillah. Another thing that caught my attention was constipation. It turned out that the muscle on the digestive became weak too. I took all kinds of laxative, from the oral one (gezai) to suppository (zayaku), and enema (kanchou). Yes, I had experienced all them in just 3 weeks.

The rehabilitation…

Every Monday to Friday, there are three kind of therapists who came to help me recover. They are the occupational therapist, the physical therapist, and the speech therapist.

To be honest, the rehabilitation session was the most favorite time during nyuuin. They asked me to stretch the muscles and workout, so I felt so fresh and relaxing. Moreover, they were all very pleasant and friendly. Let me introduce you to all the therapists.

Ino Ue-san, the occupational therapist. She can speak eigo (English) fluently so I can ask her anything. She trained me to squat, lifting hands (she pressed my arms), walking, and some others. These workouts are important to gain back my ability to do daily activities such as raising children, shopping, cooking, etc.

Ima Izumi-san and Tamaki-san, the physical therapist. They also trained me for workouts but the aims are to make the muscle function better, help me to move and live better. Then, they trained me to go upstairs and vice versa. At the end of the therapy, I can go upstairs up to 4 floors. Masyaallah.

Ino Ue-san, the speech therapist. She trained me to do face, mouth and voice exercise. She also did massage on my throat, neck, and shoulders to relax the swallowing muscle. When I ate food for the first time (or when they added the texture), she always accompanied me to check whether I can swallow without problem or not. Another therapist will come if she’s absent. Her name is Takemoto-san. As I said before, I really enjoyed my time with them. Besides I regained strength again, I could speak eigo with them or used PockeTalk to enrich my nihongo (Japanese) skills. Minna-san, I will miss all of you. Thank you for your kind assistance to me for these 31 days. Mata aimashou!

After treatments…

I was so lucky, for I had proper medical treatments here in Yokohama Rosai Byouin. The doctors, nurses, therapists, and others treated me wholeheartedly. A month here was a blessing. I witnessed God’s miracle, from nothing except lying on the bed, to be able to live normally again.

It is so relaxing, there’s no more NGT inside my nose. Ten days eating through NGT had been a challenging moment in my life.

It is so amazing, there are no more drooping eyelids and blurred vision. I can see clearly again, so I am able to read, write, cook, take care of family, and enjoying my time watching their videos I’ve recorded before.

It is so energizing, there’s no more muscle weakness. I can lift my arms, walk outside, raise my children, play with them, shopping, and doing other chores.

It is so refreshing, there’s no more shortness of breath. I can breathe normally, go upstairs without a problem, and others. Don’t throw the food. There are many others who missed eating food just I did.

Don’t waste your time to see something useless. There are many others who can’t see clearly, even to read Qur’an just I did.

Don’t feel grumble because of tiring job. There are many others who can’t move by themselves, just I did.

Let’s take a moment to contemplate, for being able to eat, drink, see, walk, raise your children. All of them are great blessings from God. Don’t take it for granted.

If you feel sadness, complain, and worry about something until you become ungrateful of His Blessings. Please, think again.

The lessons…

The infection of Botulinum bacteria had caused severe symptoms in my body. As its toxin attacks the nervous system, the muscles became weaker and weaker gradually and it may cause paralysis. I couldn’t drink and eat because it was hard for me to swallow. I couldn’t see clearly because the eyelids were dropping and my vision was blurry. I also had short of breathing and sluggishness, so it was hard for me to raise my baby or even walking.

Yes, I was infected by the bacteria that released a deadly toxin that ever known in the world. Botulism is a very rare disease, you can count the sufferers by hand. Luckily, in this modern-day, the scientists had found the Botulinum Antitoxin, so that I became a survivor. Alhamdulillah. 

I have learned so much about God’s blessing, for being able to drink, eat, and walk normally. I must be grateful for all of this and remember when I was sick, so I wouldn’t take it for granted.

Surely, to be able to eat, drink, and defecate normally is a great blessing. I couldn’t do all of that for weeks.

Be grateful, no matter what, every second of your life.