Thursday 29 June 2017

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!


4 comments:

  1. You are going through withdrawals...just keep strong. So what do you mean your doctor was right? It's cockroaches or dust mites? Dust mites BITE? I've never heard of that. I know they cause itching, but I've never heard of biting. I would think cockroaches are rampant over there with your muggy weather, but are they hard to control?

    I've said this many times before - I think it's rice period. I read something once that because it's a food staple of Asian people that allergies and sensitivities to it are an epidemic in Asian countries. I know I can't eat it as often as you would. It has a form of gluten which is why it's sticky.

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    Replies
    1. It was fleas but they have some same DNA with cockroaches. Related to each other in some way. So they can cross react.

      Yes, cockroaches are everywhere. They survived the WWI, WWII and I'm sure they'll be here even when the Earth is long, gone and dead. They will be the new 'humans'. Haha....

      Have been cutting down on rice....

      I do love my rice. Hehe....

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  2. Hi Evelyn,

    I came across your blog because I suffer from
    A really bad nut allergy that can lead me to anaphylaxis. I studied in the US so prior to this I've always got my epi-pens there. Now moving back to Malaysia I am desperate to know of a pharmacy/ hospital that carries epi-pens. Would love if you could advise.

    Thank you so much and I really appreciate it!
    Best,
    Adriana
    (Alternatively we can talk via email, my email is adriana9494@gmail.com)

    ReplyDelete
    Replies
    1. Hi Adriana!

      Replied via email!

      Do write if you have any further questions. Give me a day to reply to your second mail. Thanks!

      Take care and all the best.

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