Onward, Forward, No Looking Back

I went back to see Dr. Yadav two weeks after I first saw him in April. My results came back negative. I did not have cockroach allergy. He also tested for dust mites and all of them came back negative. My IgE was also at its lowest ever in history: 15. His conclusion was that I was 'extra-sensitive' to the bites. Usually people take about 2 months to overcome this kind of bites. It took me 7 months.

Dr. Yadav said that I've gotten very much stronger and that it was time to wean off Xyzal. I told him that I've attempted to do that many times but it has always failed. He adviced me to taper off slowly. In the past, I've attempted that but somehow no matter how I tried, it always failed. One day of no Xyzal would result in such terrible itching that I would immediately take Xyzal again to stop the maddening itch. I had even tapered from 2 tablets to 1/4 over the course of almost a year and yet I couldn't wean off it. The 'attack of the itch' was so relentless.

Dr. Yadav was worried about how it would affect my liver and kidneys as 8 years is a long, long time to be on Xyzal. No matter how 'safe' the doctors and pharmaceutical industry claim it to be, it is still medication. The liver and kidneys still need to work hard to detoxify. Add Nexium (PPI) (20 years) to the list and my system has been flooded with a very 'toxic' concoction.

This was further confirmed by the new gastro guy that I have to wean off PPIs and only use it when GERD strikes. 20 years is too long a time to be on PPIs. The damage it can cause to the liver, kidneys and bones is terrible. I'm 'lucky' that I am still fine. I hope that I will be fine until the day I die.

What new gastro said made sense but I needed to experiment to see whether he was right in his diagnosis. I became more aware of the FODMAP food that I put in my mouth. I kept a food diary once again and noted down all the reactions concerning my gut.

22nd of May 2017 was the day I stopped the PPI. New gastro guy had switched me to Controlloc for two weeks earlier and it still did not give me relief where reflux was concerned. I avoided all food with FODMAP. And I began scrutinising what I ate.

It suddenly dawned on me what was causing the 'gastric-like' pain and gassiness.

BROWN RICE.

I knew that brown rice gave me indigestion when I ate it. But when I went gluten-free 2 years back to heal my stomach, I substituted white rice flour with brown rice flour which I ground myself with the TMX. Brown rice is supposed to be healthier! New gastro guy also did share with me that he had one patient who had diarrhoea for many years a few times a day. He had placed him on FODMAP diet but yet he did not get any better. He went through the old man's food diary and told him to stop brown rice. He was well for the first time in so many years. No more diarrhoea. He could eat whatever he wanted, do whatever he wanted and go wherever he wanted! Brown rice is allowed on the FODMAP diet but yet the old man could not take it. New gastro guy said that each and every one of us is different. We need to experiment what works for us.

The pain, gassiness and IBS symptoms disappeared the moment I stopped using the brown rice flour for my baking. The stomach was so quiet. I adhered to the FODMAP diet. Even without PPIs, I did not have reflux. This meant that new gastro guy's theory was right!

I cut my Xyzal into half and was on half dose since April. On the 31st of May 2017, I stopped my Xyzal. This was actually by accident. I was so busy that I had forgotten to take it. And then 1 1/2 days later, I realised that I wasn't itching. Usually before one day was over, I would be in severe, antagonizing itch.

Don't believe me how bad it can get?

Read this LINK.

Zrytec and Xyzal are related. Zrytec is Cetirizine. Xyzal is Levocetirizine.

Click on LINK.

I thought to myself, since I wasn't itching even after 1 1/2 days have passed, why not go on to see whether I could wean off Xyzal?

I stopped eating eggs, prawns and fish as they are high in histamine. I also stopped every experimentation that I was doing and had planned to do during this time. I went back to living 8 years ago - strict with minimal exposure to chemicals and salicylates.

Day 2

Dear God.

My body decided it was time to protest about the absence of Xyzal. And it decided to do so in a very loud and annoying manner. The itch came like a tidal wave. No. Let me rephrase that. It came like a tsunami. The itch was so terrible that I wanted to gauge my eyes out, yank my hair out, scratch my skin until I could reach the insides of the bones. I wanted to dig my organs out. I had one foot inside the boat of insanity. I was going back and forth to my medication box the whole day.

"Should I? Should I not?"

"Should I? Should I not?"

"Should I? Should I not?"

I felt I was being swallowed alive by a pond of thorns.

My son wanted to hug me. I told him not to even touch me even with one strand of his hair. I felt like I was on FIRE. No words can describe the severe itching that one has to go through while going off this drug. Why did no one tell me about this?????

Never in my entire life had I felt this level of desperation. The battle in my mind was intense. I was on the verge of a mental breakdown.

"God, the itch."

"God, I want to die."

"God, I think I can't wean off Xyzal. I think I'm doomed for life."

"God, I've tried so many times and yet I've failed to get off this drug."

"God, I want to die."

"I am defeated."

I had the 'shakings', cold sweat and desperation like a drug addict. I felt ill. Really ill.

And yet my iron will helped me through. I hung on stubbornly and refused to let go. I've never been off Xyzal for two days during these 8 years. Let's see how Day 3 will go.

Day 3

I felt like I was being surrounded by Batman's Joker. I could hear his voice taunting me. I could feel that I was already in the abyss of insanity.

"Dear God, I think I am already dead."

Back and forth whole day again to the medicine box.

"Should I? Should I not?"

"Should I? Should I not?"

"Should I? Should I not?"

"Should I? Should I not?"

"Dear God, just kill me."

"I'm dead."

I took out Xyzal from the medication box and stared at it. I was defeated. I felt so down.

Remember how I said that whenever I was in a dark tunnel, I would always envision light at the end of the tunnel? I couldn't at this point of time. It was just darkness with Joker's laughter echoing on and on all around me. It felt like I was surrounded by insanity.

And then suddenly at about 4pm, a tiny ray of light shone into the dark tunnel.

There was a short window where the itch had actually stopped.

That gave me enough strength to go on.

I slept through that night and it was a very deep and refreshing sleep.

Day 4

The itch continued to torment me. But the intensity had lessened very much. But my mind was going crazy. I kept going to the medicine box as today every atom, nucleus and fibre in my being were screaming,

"WE WANT XYZAL!"

I felt this severe craving for it. Like a pregnant woman with a severe pica. Everything in me was crying out loud for Xyzal.

But the itch was subsiding and I even had 2 hours plus itch-free. That was a very good sign indeed. I needed to reign in my mind and tell myself that I can do this and it will soon be over. I kept on seeing the light at the end of the tunnel.

The body started breaking out in boils at random places. My ear lobes, my scalp, my feet were breaking out in boils. Ulcers too started popping up on the tonsils, at the tip of the tongue and many places in the mouth.

Honestly, I'm drained emotionally and mentally.

We shall see how Day 5 shall go. Keeping fingers crossed.

(...to be continued)

The beginning of this journey: 1000 Kilometres and Candida

The second part of this journey: Candida & Dr. Yadav

The third part of this journey: Pain & Rock Star No More (Part One)

The fourth part of this journey: Pain & Rock Star No More (Part Two)

The fifth part of this journey: The New Hell Called Steroids!

The New Hell Called Steroids!

Prednisolone is a monster even though it is a gift-from-heaven where inflammation is concerned. When I was on steroids 8 years ago, the side effects were A.W.F.U.L. That word is actually an understatement. It is the devil in its truest form.

My mouth began to develope a metallic taste. It felt as though my saliva glands were producing some foreign liquid. My sense of smell heightened 100%. Every single smell became so glaringly strong. I had nightmares the first night itself. My skin 'glowed' with the 'steroids glow'. Every single bite from mosquitoes and the bug-bites-from-November's-holiday vanished. The 'steroidal-migraine' arrived with a loud bang. Bowel movements became goat-manure-pebble-like. And 'bloated-like-a-balloon' was how I looked. My mood became PMS+menopause = deranged woman. I felt like the dragons that Daenerys Targaryen owned in Game of Thrones: always breathing out fire. I felt I was the three dragons combined. The heat that I felt on the insides was terrible. Hubby and son said they could feel the heat emanating out by just sitting next to me. 

BUT.......

On the third day, I started to have short pockets of relief from the pain. As the days went by, the pockets of relief got longer. 

Many times in life, shit happens. And SHIT happened. 

Hubby had to go for an emergency surgery as he had a very badly infected abscess to the point he could not move. And the abscess was at the inner thigh. 

The next day after the surgery.

My plan to rest and take it easy during this period of steroids just vanished into thin air. I had to take over everything as hubby was immobilised and was in so much pain after the surgery. He couldn't sit. Couldn't walk. And I had to bring him to the hospital during the first few days to change his dressing. After that I had to take over cleaning and bandaging his wound! It was his turn to look like a ghost as a result of the pain. Everything fell on my shoulders. It was a VERY trying time. But it was a good thing it happened when the pain was slowly diminishing and not when I was paralysed with pain. 

Exhaustion is an understatement to describe how I was feeling. The steroids caused my emotions to go haywire. I always tell myself that at the end of any dark tunnel, there will an opening and that there will be light. It is only a matter of time. I always play that mantra over and over in my head when tough times come. That's how I encourage myself to hang on and to move on. 

Once the two weeks of steroids were over, I went back to see the new gastro for a follow-up appointment. 

He of course was pleased that the pain was gone. He wrote down every single detail of how I felt during the treatment and when the pain started to subside and when it was completely gone. He said I was his first patient in his entire life as a doctor that he treated in this manner. 

We then talked more about my IBS and GERD problems. He very strongly believed that the IBS that I had was mimicking GERD. He believed that I was consuming certain FODMAP foods which were fermenting in my gut thus causing a built-up of gas which forced the acid in my stomach to go up to my esophagus. My duodenum wasn't the culprit anymore. Since it was the case, PPIs would not work at all! What have I been ingesting all these years for then??!!! Why did Rock Star give me so much PPIs when GERD was no longer the case?

He wanted to try another method at the same time. He changed Nexium to Controlloc and put me on it for two weeks. And then I was to see him again and report to him about the developments of my gut. 

Two weeks had passed and yet I was still having reflux issues. He then put me on Dupastalin for two weeks to stop the IBS. I was to see him again in two weeks.

(...to be continued)

The beginning of this journey: 1000 Kilometres and Candida

The second part of this journey: Candida & Dr. Yadav

The third part of this journey: Pain & Rock Star No More (Part One)

The fourth part of this journey: Pain & Rock Star No More (Part Two)

It's All About Diet (Part 3-FODMAP [The MONASH University])

The new gastroenterologist introduced the MONASH University's Low Fodmap handbook to us.

You can access the website and place your order for the book. It costs AUD$10. You have to add some money for transportation. (Click on LINK to access the website.)

This is the app which I bought. 

4000 Years of Medicine in One Picture!

*picture taken from HERE

Pain & Rock Star No More (Part Two)

When we walked into the new gastro's office, my heart actually sank. He looked like a strict headmaster. He looked like he had a whip behind his desk and was ready to whip any of his patients who dared to question him.

He asked me about my problem once we were seated. After explaining to him about my pain, the treatments that were administered at the ER on Monday and Wednesday night, the medication that I had been ingesting, he asked me multiple questions. He was very meticulous and very thorough. He asked about my history. He went through all the documents/X-Rays/test results that we had brought. (Many doctors do not do this. They feel that it is a waste of time.) He then told me to lie down on the bed and proceeded to press my abdomen. I almost jumped through the ceiling from the pain. He continued to press on the left side and right side and continued to asked me about where was more painful and to rate the pain to him on a scale of 1 to 10. I told him it was 100!

And then he dropped the million dollar statement.

It wasn't GERD.

It wasn't my stomach.

It was my intestines!

The food poisoning that I had during the time I saw Dr Yadav wasn't over.

WHAT?!!?!

The bacteria that is usually the culprit for such poisoning is Staphylococcal Enteritis. You can click on LINK to read up about it. New gastro guy said that some people do not have the usual 'thunder and lightning' (diarrhoea and vomiting - which I did not have) when they are struck with this bacteria. This bacteria then exudes a toxin. This toxin causes inflammation in the intestines (panniculitis - inflammation of the fatty tissues of the intestines). Thus, the severe pain which I had. My intestines were INFLAMED! The bacteria and its toxin were long gone. But the inflammation that was caused by the toxin could not go away.

And the best drug for this is Ibuprofen. One of my enemies. It's an NSAID. Which I definitely could not have.

He said both his hands were tied and he has never come across a patient like me before.

Thus, the only solution would be PREDNISOLONE.

Yup. Steroids.

2 weeks of steroids.

I wanted to scream FML.

I had no choice.

So steroids it was. 6 tablets to begin with. 30mg for 3 days and then taper to 25mg for 3 days until it would reach 5 mg.

He also said GERD would never, ever, ever, EVER cause such pain like this. That was why Nexium didn't work. He did mention that overuse of Nexium can also cause it to be useless. Then it would be time to switch PPI. Even though all of them are labelled as PPIs, different brands are created differently. And by switching to another brand of PPI, the GERD can be controlled.

BUT, he did say long term of PPIs are not good. GERD is a life-long chronic disease. One must learn to control it and if an attack does happen, go on the PPI for 5 days and then stop.

New gastro also mentioned that many times IBS (Irritable Bowel Syndrome) mimics GERD. And the cause of IBS 99% of the time is caused by FODMAP! I wanted to cry with joy. I told him that I had just blogged about it a few days ago! A doctor who BELIEVES in food intolerance (other than Dr. Yadav that is). He then proceeded and showed us the Monash FODMAP book and also the FODMAP app in his smartphone. I had wanted to buy the app a few months back but that didn't happen.

I was just so excited that I finally found a doctor who believed in food intolerance and sensitivities.

And so the Prednisolone journey began.....

(...to be continued)

The beginning of this journey: 1000 Kilometres and Candida

The second part of this journey: Candida & Dr. Yadav

The third part of this journey: Pain & Rock Star No More (Part One)

Pain & Rock Star No More (Part One)

The pain in the upper middle region of my abdomen was becoming worse as the days went by. It was so excruciating to the point I was swallowing all sorts of gastric medication which I had. And yet the pain did not go away. It got worse and worse. I couldn't eat or sleep. All I could do was curl up in bed and whimper.

I finally succumbed to the pain and went to the ER on a Monday night (10th April) The usual ER doctor who knew my history of reflux and my allergies gave me Nexium (PPI) via IV. Usually it would work after about two hours. This time the pain didn't diminish at all. Imagine having this kind of pain 24-hours non-stop. I told my dad that it felt like like something was clawing from the insides, eating my insides and that there was a huge cavity in my stomach. He said it sounded like Ripley's Aliens. HAHA!

The climax of that night was fantastic. I had parked my car in the basement of the hospital because of the rainy weather. Also the open carpark was full of cars from visitors. When I left, I took the lift as usual. The lift was slow in arriving but I did not give it much thought because I was in so much pain. I entered and pressed B (for basement). The buttons didn't work. As I was about to step out of the lift, the doors closed and down it went. I walked out of the lift and pushed the doors which led to the carpark. Lo and behold, they were LOCKED! I then walked back to the lift, and that was when it dawned on me that the lift wasn't FUNCTIONING! I was trapped. And the best part was that my phone did not have a SIGNAL as I was in the basement!!!!!!! OMG! I could see my car through the glass window of the door. I was so near yet so far. I shouted for help at the top of my voice and banged the door. No one came. I continued doing it until I realised that nobody could hear me. I tried the lift again. I jabbed the buttons furiously hoping that the lift would descend. The lift did not move. I then walked to every part of the area that I was trapped in trying to get a signal with my phone. No signal at all. Tried banging the door AGAIN and screaming for help at the top of my voice. Tried jabbing the lift buttons AGAIN! Walked at every corner of the area that I was trapped in AGAIN! Suddenly, I had SIGNAL on my phone!!!!!!! I called the ER and told them of the predicament that I was in. They got someone to send the lift down. Then only was I told that the lift ceased operating by 10pm. Then why did the lift worked when I used it? No one could answer me. Twilight zone? By the time I got home, it was 11pm.

Tuesday was no different. The pain was as bad. My part-time cleaning ladies said I looked like hell. I HAD to see a gastroenterologist. I knew that if I went to see Dr. Rock Star, I would be sent for a scope again and he would prescribe me PPIs to no end. My last endoscopy and colonoscopy was only over a year back.

Who should I see?

I did not know of any other gastroenterologist. I decided to go to the hospital's website and check out each and every gastroenterologist that worked there. Finally, one caught my eye. One of the conditions that he had treated was food intolerance! Dr. Rock Star doesn't believe in this. He told me I could still eat whatever I wanted even though I told him that certain food caused me to be sick in the stomach. He instead said that I was stressed or filled with anxiety and proceeded to give me PPIs and anti-anxiety/sleeping medication. I called up the hospital and the new gastroenterologist had a slot available on Thursday afternoon! I couldn't wait.

Wednesday evening came, and I was at the ER again. Hubby had to take emergency leave and bring me to the hospital. I couldn't even drive. The usual ER doctor who saw me on Monday stayed back to attend to me even thought his shift was over. Bless him! He said I was so pale looking that I looked like a ghost. This time he IV-ed Nexium and Tramadol (an opioid group painkiller which I could thankfully take). And he did blood tests and sent me for an ultrasound. Everything came back excellent. He said that I had to see a gastroenterologist ASAP. I told him that I would be seeing one the next day.

Thursday finally arrived.

I would be lying if I told you that I wasn't anxious. Would he be like Rock Star? Or even worse than Rock Star?

My heart sank when I walked into his consulting room.....

(...to be continued)


The beginning of this journey: 1000 Kilometres and Candida
The second part of this journey: Candida and Dr. Yadav

Buckwheat Tea

8 years plus of not being able to have tea can really cause one misery.

Tea is high in salicylates. Even when I could have tea (before I had the anaphylaxis), they caused me to be wide awake the whole night! Some even gave me migraines from the bowels of Hades.

So I did some research recently.

Buckwheat is negligible in salicylate. And one can make tea out of it.

YAY!

I washed 500gm of buckwheat groats and baked them at 180C for 1/2 hour. You can also bake them until golden brown.

I got a tea infuser.

Once they were cool, I poured them into a jar. 

I placed about a teaspoon of the buckwheat groats into the infuser. 

Then I dunked it into a cup of boiling water. 

Voila! Buckwheat tea!

Alternatively, you could buy these tea bags and use them instead if you do not have an infuser.