my autoimmune disease – from the start

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When I first found out I had an autoimmune disease, my family, Anton and I immediately turned to the Internet to see what it had to say about my condition. It’s not always advisable to do so, because what you get from typing a disease on Google almost always leads to the worst case scenarios, like death. There’s some truth to what you might find, but be wary with what you decide to take in. As expected we got different results, read about extreme cases and possibilities of death, but also remission. From these readings it was testimonies from functional doctors and actual autoimmune disease patients that were most convincing. My mom then suggested that since testimonies played a major role in educating me, I should share the experience as well.

This might be a rather lengthy post, meant for those really interested to know more about autoimmune, what the disease is and what it does, what’s being done to recover, and basic health tips anyone can learn from this experience. In case you’re interested, you can read on to learn more about it.

WHAT WAS YOUR LIFESTYLE LIKE?

I worked out regularly (three times a week), usually at 6:00AM. I’d go to bed around 11:00PM – 12MN, so that would mean I would get five to six hours of sleep.

I worked usually from 8:00AM – 5:00PM, and would sometimes extend when needed. Work was sometimes stressful–could be a mix of load, emotional stress, and improvements needed in managing how I worked.

Food: I wasn’t always eating bad (meaning fast food and junk). I would allow myself to bad food once in a while, but I’d try to eat more cooked food from the house as much as possible.

Alcohol: I would drink about two to three times a week, and more if there were special occasions. Drinks would mostly be G&Ts, but I also really liked tequila and occasionally, scotch and beer.

HOW DID YOU KNOW THERE WAS SOMETHING WRONG? WHAT DID YOU FEEL?

A good workout would mean waking up the next day with slightly sore muscles. I would get that, but then I started to notice that different muscles in my body would hurt even though I didn’t work on them (though the sore sensation felt the same).

I started feeling fatigue and feverish often. After work, I would slump on my bed and nap (which is not usually part of my routine), and I would wake up feeling like my body was burning.

My eczema was flaring up. It wasn’t the first time my skin was acting up–I would usually have this when there’s a weather change or when I would be extremely stressed. I thought it was “normal” in a sense that I was born with it and I should expect to have it once in a while, but later on I learned that it’s actually a sign of inflammation in the body which manifests in the skin. I also got several boils (which I never got before), so I found it very strange.

An Instagram story I shared on October 3, 2018 when I was feeling really bad and didn’t know why.

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WHAT DID YOU DO?

I got a blood test in HP to see if there was anything wrong, and true enough the tests showed extremely high numbers for SGPT, SGOT, Total CPK (among others, but these are the numbers that the doctor pointed out to be really high). (SGPT and SGOT – indicators of liver damage when high; CPK – released into the blood when there’s muscle damage)

I got a second blood test in Makati Medical Center to double check, and the results (which were more accurate), came out higher. To give you an idea:

SGPT Normal: 5 – 55, Results: 254
SGOT Normal: 5 – 34, Results: 682
CPK Normal: 29 – 168, Results: 8,359

The doctor I was consulting with then suggested that I meet with an infectious disease doctor to rule out any possibilities of an infectious disease. I met with an internist for infectious disease, and he did rule out the possibility of it. He asked for another set of blood tests. Upon seeing the results (which were trending up), he decided to confine me to protect the other organs from getting damaged and to perform more tests. He brought in a rheumatologist (muscle doctor) and an endocrinologist (thyroid).

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WHAT EXACTLY IS YOUR SICKNESS?

After performing several tests (blood tests, EMG, ultrasounds, muscle biopsy), my doctor said I had Polymyositis, an autoimmune disease that attacks the muscles. Basically, my immune system went haywire and started attacking my body instead of protecting it, and it was my muscles that suffered from it. This, and hypothyroidism, which they said is to be expected with any autoimmune disease.

After a week in the hospital I was able to go home and was prescribed a series of medicines to help bring down the blood test numbers. I took another blood test one week after and the results were still bad–total CPK even went up by almost 2000. My mom decided to get a second opinion from another rheumatologist (my main doctor now) and from this, we learned much more about the disease than we did from the first rheumatologist. I got confined again.

With Polymyositis, the chances of malignancies are high, so my rheumatologist asked for a whole body workup (MRI, Pap smear, neck, breast, and abdomen ultrasound; a battery of antibody tests, and more) to make sure that we were not dealing with cancer (which was in my family). Luckily, all was clear.

From the antibody tests they found that I actually have what they call Mixed Connective Tissue Disease, which meant that I was showing symptoms of several autoimmune diseases–Polymyositis, Lupus, and Rheumatoid Arthritis. The numbers were still going up and I was getting fever in the hospital, so they did what they call pulse therapy, where they give me 1g of steroids for three days straight. This helped bring down the numbers.

HOW DOES THE DISEASE AFFECT YOUR BODY?

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Stiffness everywhere, especially in the chest and the neck. I couldn’t hold up my neck for weeks without pain or getting tired. My voice changed and became high because it always felt like there was pressure on my chest and neck.

I lost a lot of weight, mostly muscle. From around 115 lbs I went down to 94 lbs.

A lot of falling hair.

Since I lost a lot of muscle, standing up was difficult. I couldn’t raise my arms, open cans, unbutton my pants, lift anything, enter a car on my own, go up the stairs. My back would always be painful or uncomfortable; it felt like my spine was on the verge of bending or breaking cause I couldn’t hold myself up well.

When something would stress me out the pressure on my chest would intensify and I would get panic attacks and cry. The only thing that would calm me down was a hug and hot compress for my chest.

I would get tired easily. Being under the sun felt like energy was being sucked out of my body, and I would be drained just being exposed to it for a few minutes.

I couldn’t cough properly or clear my throat, and swallowing was difficult so there were times I choked on my food.

My fingers were usually numb so typing and pressing anything was hard (Reynauds disease, which I also had).

IS IT GENETIC?

Yes, I have autoimmune in my family. But as my functional doctor said: genetics is only 20%. The 80% chances of the disease realizing is from environmental factors, like the things you take in and your lifestyle. You can also still develop an autoimmune disease even if it’s not in your family.

WHAT HAPPENED AFTER THE SECOND HOSPITALIZATION?

I took another blood test after being discharged from the hospital for the second time, and the numbers still went up. During this time I was already planning to see a functional doctor. From the testimonies that I read, and from testimonies shared by people I got to talk to who went through the same thing, the medicines being given to “treat” the disease can actually make the condition worse and even damage the organs. They’re there to treat the symptoms, but not actually find the cause of the problem. My family and I knew that we needed a more holistic approach to this to really find out the cause and correct certain things in my life to help me get better.

What I did before seeing my functional doctor: I started eating better, which meant fruits and vegetables on a daily basis (veggie juice and berry shakes in the morning) and fruits and veggies even during my meals. I avoided gluten, sugar, processed foods and dairy, which are foods that cause inflammation in the body. It was when I started doing this that the numbers in my blood tests started going down. So did the dose of my steroids.

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Here’s a timeline to give you an idea of the trend of my numbers since I started being conscious with my food.

Last week of November: No functional doctor yet, no diet. Numbers still went up (I left the hospital after my pulse therapy with total CPK of 5,000).

November 27, 2018
SGPT Normal: 5 – 55, Results: 593
SGOT Normal: 5 – 34, Results: 654
CPK Normal: 29 – 168, Results: 7,479

I started eating more vegetables and fruits in December, avoided gluten, dairy, and sugar, and ate clean food as much as possible. I still cheated a bit especially doing Christmas and New Year, but my numbers started to go down.

December 5, 2018
SGPT Normal: 5 – 55, Results: 453
SGOT Normal: 5 – 34, Results: 548
CPK Normal: 29 – 168, Results: 5,336

December 20, 2018
SGPT Normal: 5 – 55, Results: 302
SGOT Normal: 5 – 34, Results: 387
CPK Normal: 29 – 168, Results: 3,725

January 7, 2019 was the start of my 21-day detox with my functional doctor. The strict diet: no gluten, dairy, sugar, eggs, soy, peanuts, beef, pork, shellfish, chocolate, coffee. The process starts with a detox to rid your body of all the toxins. After 21 days, there will be a reintroduction of all the items that were eliminated. Once an item is reintroduced and it doesn’t cause any form of reaction (headache, diarrhea, fatigue, weakness, allergies), that would mean my body can take in the food.

January 22, 2019
SGPT Normal: 5 – 55, Results: 105
SGOT Normal: 5 – 34, Results: 121
CPK Normal: 29 – 168, Results: 1,162

It was really only when I started becoming conscious of my food that the numbers started trending down. My rheumatologist did increase the dose of steroids and immunosuppressants when it went up, but once I started my diet and numbers started going down, he decreased the dose slowly. Even when he decreased it, my blood test numbers were still improving. Other things that changed aside from the diet:

  • I took a leave of absence from work to really rest.
  • I started sleeping on a grounding pad, which was installed by Anton’s brother, Carlos. Basically there’s a pad under my bedsheet that is connected to a rod planted to the ground outside my house, which allows me to ground while I sleep. There’s a lot of benefits from grounding, which you can learn about here. Ever since I started sleeping on the pad, I’ve been able to sleep really well at night, for 8 hours.
  • More water.
  • Quiet moments in the day (may be a form of meditation).

I started feeling really bad mid September 2018, and got diagnosed with the condition mid October. First week December, I started watching my food, and my strict diet started in January 2019. I still haven’t recovered from this and my blood test numbers are still abnormal, but I’m doing so much better.

+ I no longer go out with a wheelchair and my neck pillow. I can walk on my own, but I still struggle when I need to stand up from chairs or need to do anything that requires getting up or stepping up.
+ I am doing basic exercises now like walking, step-ups, some lounges, stretches, and basic yoga moves.
+ There’s still some stiffness in my chest, but not as bad as before. My voice is also sounding more normal now.
+ I have more energy now compared to before, and I can last a day out of the house. I still can’t drive and I constantly need to be with someone just to make sure I don’t get accidentally knocked over by someone. My reflexes and ability to balance aren’t totally back.

Food truly is medicine, and there’s so much to learn about what we take in now that can benefit and harm our body. The sad part is that some, myself included, only really realize it when they’re put in the position wherein the body can no longer function the way it used to. My family and I learned it the hard way, but we are still very thankful for this blessing because it has taught us a lot. The last few months of 2018 were challenging, but we were so guided by God, our friends and our family, that instead of feeling the burden and heaviness of the situation, we found so much beauty in it and still had an amazing Christmas and New Year.

Special thanks to:

My parents and my siblings, Mara, Chesca, Diego, Bettina. There’s never enough thanks to them for going through this with me.

My sister, Chesca. Since she’s able to manage her own time as a freelancer, she was the one who really helped me in my everyday–from bringing me to blood tests and doctors appointments, to driving me around wherever I had to go, to being the chef to prepare all my meals for my strict diet, and helping me in almost everything I did when I wasn’t able to do things on my own.

Anton and his family. Thank you for the prayers, help, and all the support given to me and my family during this time.

Cleo, my cousin’s fiancé. She has lupus and has been battling with it since early 2000s. She endured a lot of pain throughout her condition, being given copious amounts of steroids and other medication, which damaged her organs in the process. After years of taking in everything the doctors in the hospitals gave her, she decided to put an end to it and really studied her body and alternative approaches to heal herself. She still hasn’t fully recovered and is still experiencing difficulties, but she’s doing so much better now. She no longer takes the large doses of medicine given by the hospital, and relies heavily on fruits and vegetables to keep her stable. She shared her whole journey with me and really helped educate me and my family about a more holistic approach to treating autoimmune.

Relatives, friends, my B&B family, PAREF family. All the prayers, words of encouragement, prayer cards, gifts from the holy land, and support given to me and my family are overwhelming.

My rheumatologist Dr. Paulo Lorenzo, and my functional doctor, Dr. Raymond Escalona from Lifescience for Health and Wellness. Thank you for educating me and for being the best doctors to help me.

All the positivity and strength I have, I owe it to God and all the people I mentioned.

Thank you!

2 thoughts on “my autoimmune disease – from the start

  1. Ninez Jerbi

    Thank you for sharing your experience. So sorry you had to go through this ordeal and will have to manage it from now on. Knowing the genetic part of it was indeed, helpful, There’s a lot that I am learning about our (and my own) family ‘s medical issues that has compellled me to change my lifestyle and really do mindful eating and just pay attention to the signals my body is trying to tell me, physically and emotionally. I hail your positivity and your choice to see the good side that resulted from your very challenging experience. Happy for your gifts of faith, family, gratitude and self-compassion as well. “May you feel safe and protected, May you feel happy and peaceful, May you feel healthy and strong, May you live each day with ease.” Ps. Hi to your mom and dad.

    Like

    • danielamgamboa

      Thank you tita Ninez! Being conscious of your everyday food intake is really the best way to care for your health, with or without family medical issues. I salute you for doing something about it! It has done wonders for me and my family.

      Like

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