It has been a while since I wrote my last post. The reasons? I was busy researching for answers, I was looking for a cure!!!
While I was getting better doing Ketogenic diet, I was in the second phase of Nitendanib medical trail, the real pills. In phrase I, I was very hopeful that I would be able to contribute to medical research to find a cure for Idiopathic Pulmonary Fibrosis, using my conditions as an advantage. But Nitendanib shouted loud and clear, it is not for me!
I started the medication at 150mg, twice daily for a week. Unfortunately, the side effects were brutal. I had serve reactions to the medication. Symptoms included heavy diarrhea, dizziness and fatigue. The trail team prescribed me Gastro-Stop and Metoclopramide (Pramin) and encouraged me to continue the medication for another 3 months. The Gastro Stop reduced the diarrhea sequence and Pramin helped reduced dizziness, but Nitendanib robbed me of energy. My energy level was plummeted to the bottom.
Second month into the trail, I requested for reduced dosage of Nitendanib to 100mg, hoping the side effects would subside but I was disappointed. The side effects remained the same. However, I decided to continue the medication anyway. I thought I needed to be in it to win it.
My conditions kept deteriorating…everywhere I looked, the people who came for treatment, around me were slowly fading away…It was depressing.
After a long hard debate and consideration with medical research team, friends and family, I called the trail quilt. At this point, I didn’t realize more damages were done to my body. I was surely naive.
Few months after quilting the trail, my skin was crawling days and nights, I had serve reaction to all most every food I ate. I had sleepless nights because the level of skin itchiness and mood irritation was unbearable. Even after ultra violet light treatments, 3 times per week and daily intake of antihistamine plus low histamine diet, I didn’t find any relief. Ultra violet light treatment used to be my savior but not this time 😭.
I suspected my gut was damaged by Nitendanib, killing my microbiom just like when I had food poisoning 8 years ago, which brought the autoimmunity on me, big time.
I started to have blisters on my face and chest, which I never ever experienced before. I raised my concerns with my specialist team, they told me it’s part of Scleroderma package. I was told to take the medications they prescribed. It was what it was, and there’s not much they could do to help. I was outraged, quietly…
How would I survive another year if I felt the way I felt???. I couldn’t even breathe properly and I felt exhausted all the time. I was worried because I have a young son who I adore and love. I have a husband who cares so much about me and loves me regardless of what we are going through. How could I just let myself slip away when I have not visited Hawaii yet??? Lol…I was not ready to move on with my declining health. Not now anyway.
Again, I turned to Dr. Google to search for answers. Reading Facebook posts about numerous people with scleroderma are in remission with Functional Medicine. It gave me hopes and excitement. But I was also skeptical about my ability to heal at the same level as other have, because I have multiple autoimmune conditions and a scarred lung.
From Google I also found the best rated Naturopathic in town. I hesitantly gave them a call for a free consultation. The cost of service though was shocking with no medical rebate!!! and to have access to the services I had to purchase a starter pack. I was very disappointed with the financial aspect of it but went ahead with the treatment plan anyway, thinking if this could help to turn my condition around, it would be worth it.
After 2 months with Naturopathic, we ran numerous tests and found out I am fructose and lactose intolerant. Now, that makes so much sense. It explains why I can’t eat a whole fruit and drinking fresh milk. So AN APPLE A DAY is bad slogan for me for sure!
The OAT (organic acids test) results showed I had mild fungal infection, nutrients deficiency, and neurotransmitters issues. I also have genes that prone to develop Alzheimer.
The food intolerant test shows I am intolerant to cocoa, cinnamon, chili pepper, yeast and swords fish. How exciting!!! (that’s sarcastic…) I am Asian who is calling Australia 🇦🇺 home and I love spicy food! I was raised and fed chili at the age of one! It definitely killed my passion for food and cooking. However, I had to do what I had to do to get better. So my food list was trimmed shorter than ever and it looked like this 👉🏼 low-FODMAP – Keto without dairy – low histamine. Now, do you see the picture?
Another most challenging issue is, I have severe Raynaud’s attacks. Therefore, the thyroid function test was ordered to find out if there’s any thyroid dysfunctional issue. But the results came out fine. I wasn’t sure to be happy or sad at this point.
We had the data!!! What’s next???
I continued to have severe reactions to food even after eliminating food items that known to be safe for me to eat such as spinach, lemon and green tea. So that’s when the treatment plan become really confusing. My naturopathic puzzled and I was frustrated, very frustrated…
We spent the next two months exploring with oxalate , Salicylate and Low histamine food with fuzzy directions. My food allergies was getting more and more severe, and so we put it down to Mast Cell Activation Syndrome and leaky gut. Here, I was prescribed L-Glutamine and Pre-probiotic to heal my gut along with other vitamins and minerals. I was told it would take 6 to 12 months or more to heal my gut.
At this point, my physical and mental health was tempered. I felt alone and defeated. I dipped into depression, silently…WHY? Because I felt I had let my family down. I put them on financial restrain for no reason. The treatment was going nowhere. I felt so selfish so I retreated into my shell, refused to see Naturopathic and specialist all together for 2 months. I stopped doing things I love to do…no more cooking, socializing and writing.
While I was retreating and recouping, my diet regime was always here to stay, simply because I was scared to eat anything else rather than restricted diet. I stuck with few food items such as herbs, cucumber, lettuce, carrot, Bok Choy and some protein. At least, these food items didn’t trigger the symptoms of my multiple autoimmunity. I bought my time by adopting anti-inflammatory diet because I knew the diet is always my savior. But I also knew I have nutrients deficiency. I was very depleted!!!
On the positive note, with Functional Medicine, I found some root causes such as food intolerant and an infection, which enabled me to further treatments.
While I was waiting for the next chapter to unfold…I meditated , attending pilate classes and did yoga daily to keep me zen.