Dr Chia’s Equilibrant – second report

Hello,

Two weeks ago I wrote about starting to take Equilibrant. I had read about Dr Chia’s research and was encouraged by the science and Dr Chia’s personal story, as his son had post-viral chronic fatigue syndrome after an entrovirus infection, or more correctly myalgic encephalomyelitis.

For the first two weeks, I took one tablet a day with food and experienced mild dizziness. This decreased and after another week I increased the dosage to two tablets a day. I noticed less dizziness with this increase, although when I tried three tablets yesterday the dizziness was worse.  I plan to stay on two tablets a day for another week, before trying to increase again.

I haven’t noticed any other symptoms (except I have been constipated, sorry if that is TMI, and wondered it it is some of the ‘fillers’ in the tablet.) According to the packet, aside from the active ingredients, the Equilibrant tablets contain:

Other Ingredients: Dextrose, Cellulose, Silicon Dioxide, Cellulose Gum, Magnesium Stearate (Vegetable Source), titanium Dioxide, Glycerine, Stearic Acid (Vegetable Source), Yellow #5, Blue #2 and Carnuba Wax. 

We would all prefer it without these ingredients and colours, we don’t need them.

I’ll keep you updated on how it goes. Apparently you need to take it for three to six months. One month in and no improvement in symptoms yet!

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Working vs not working with ME (or the time I lost my job)

Work is important to me and there are so many things I enjoy about working but it isn’t easy with illness.

At first, my workplace was sympathetic, holding my job for me and letting me take leave without pay when my sick leave ran out.  After about six months, I could do some work – eight hours a week from home. I was ultra keen to get back to work and thought I’d increase my hours pretty quickly but it took about a year before I could increase them or be well enough to into the office.

Going back into the office was challenging. I have noise, smell and light sensitivities, plus a lot of people wanted to chat to me and find out how I was, so I didn’t get much work done the first five times I was in the office, but the occupational health and safety officer was supportive and told me not to worry about that, I’d soon settle back in. I wrote more about it in this blog post, Work and ME.

Getting dressed for work probably deserves its own post! It took effort to dress, pack food (as there was nothing suitable for me to eat in the work cafe), painkillers and the work laptop and papers, then drive to work (about an hour round trip door-to-door).

After increasing my hours, I was always evaluating whether I could do more. Both to earn more money, contribute more to my team and also because job cuts were looming and I didn’t want to lose my job. It shouldn’t have been so hard, because logically my health should have come first, but I found deciding how much to work difficult. I would go into my doctor’s office and negotiate, always trying to push for more and he joking called me a ‘bully’ for trying to get him to increase them when he felt I wasn’t ready.

Sometimes I found it hard to meet the number of hours I was meant to do, I wrote a little  about it here.

My dilemma was resolved when my position was cut in a restructure. About half my colleagues lost their jobs as well.  I was upset about losing my job and the process seemed to drag on, which was stressful and not great for my health.

I finished work a couple of months ago and am only now reaching an equilibrium. When I first finished work, I did too much. Too much socialising, exercise and housework, to try and make up for the times I’d given up socialising or exercise in order to have energy for work. I also felt like I couldn’t afford to keep cleaners because I wasn’t working anymore.

Then I was miserable because I felt worse, when I expected to feel better. So I cut myself some slack and didn’t make any appointments (social, massage, sauna, yoga classes), borrowed a huge pile of books and movies and just relaxed. It helped!

This week I’m back into a gentle routine, going out for a yoga class and infra-red sauna and massage appointments – feeling better, not using more energy than I have and hopefully saving a little for my body to use for recovery.

I still miss my job but I’m planning to use the next six months to work on my health instead, then think about a job that suits me and how my health is then.

How are you? Are you working? Do you want to?

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Tracking your symptoms with apps or on paper?

Do you track your symptoms and activity? I used to but fell out of the habit once I stopped improving and started sliding backwards in my recovery because it was, quite frankly, dispiriting to see I wasn’t doing as well as I had been. It is much more fun to enter in activities when you can see you are doing better week by week.

So that is why I stopped. But it is time for me to start again, at least to provide evidence to the doctor, if not keep myself accountable and make sure I’m resting enough.

I used to use Bruce Campbell’s activity log  printed out and personalised a little. I’d sit down in the afternoon and fill it out, then cart it along to every GP visit.

Recently I made an appointment with Griffith University’s National Centre for Neuroimmunology and Emerging Diseases. They have released their own free app, CliniHelp, which I downloaded and had a look at. There are 35 questions to be completed each week on physical and emotional health, medications, visits to health professionals and supplements (and why they ask me my height weekly is beyond me!). The Nutritional survey asks you where, what time, and what you had for breakfast, morning tea, lunch, afternoon tea and dinner. And I didn’t even get to the monthly survey. It all seemed to long and repetitive to me, so I gave up.

I have downloaded and enjoyed using the Sleep Cycle app to track the duration and quality of my sleep, along with resting heart rate in the morning. Taking my morning heart rate is an important measure for me and I kept that up, but I like how Sleep Cycle takes it for me. The app was about $3, is quick and easy to use, I have the ability to add in factors during the day that might affect my sleep (like an outing or yoga session) and gives me lots of satisfying statistics.

I’ve asked around about other apps and two which have been recommended are Pain Tracker and My Pain Diary. I haven’t tried these but considering it.

Another one I’m considering is ME Diary, which has two reviews in the App store – one terrible and one great – so I’m still weighing it up.

Do you track your symptoms, activities or progress? How do you do it?  Any tips?

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Dr Chia’s Equilibrant

Two weeks ago I started takingDr Chia’s Equilibrant.  I read that it can sometimes cause a flare-up of symptoms so I didn’t want to take it while I was increasing (or trying to maintain) my hours at work. Silly, I know, I should put my health first.  Now that I’ve lost my job I am putting my health first and feel the freedom to try things that might make me worse for a little while.

Dr Chia believes that enteroviruses can cause myalgic encephalomyelitis (he refers to it as chronic fatigue syndrome) and his son improved after taking a Chinese herb, Oxymatrine. He created his own tablets including herbs and vitamins – Equilibrant.

Firstly I took Dr Chia’s published study about chronic fatigue syndrome and enteroviruses, along with information about Equilibrant to my doctor, and asked his opinion. He said there was no harm in trying (and he’s usually a downer about most things).

The idea that the herbs are anti-viral and, according to research, have a 52 per cent chance of improving my health.

It was shipped easily from the US to Australia.

I started on one tablet a day and noticed increased dizziness (mild). One fortnight in, I haven’t noticed an improvement in symptoms but I still have the dizziness so I haven’t increased the dosage yet. I’ll keep you posted.

Have you tried, or thought about taking, Equilibrant? What do you think of Dr Chia?

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It has been a while, how are you?

Four months since you have heard from me, mostly because I haven’t been well. For around the last six months, I seem to have been sliding backwards.  I was getting better, very slowly, between around 5 months and 2 years into this illness. At the moment, I’m back where I was 18 months into it. It sucks not to be as well I was and frustrating not to know why.

Boosts

You know how there are things that make you feel better? Escaping to a health retreat where everything is done for you, one-on-one yoga classes, eating your favourite fruits…all the tricks you pull out when things aren’t going well. None of them worked this time. It was dispiriting to go to the health retreat and not manage activities (or even handle sitting in a noisy dining room) that I could do six months ago.

All I can do is be kind to myself and keep up with the things I know are good for me. Although I slipped with my diet, ate cheese, toast and chips (comfort food) which I know don’t agree with me and am paying the price now with awful constipation!

OK. I’ve said enough today. How are you? I’m interested to hear how you are going.

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One More Update

Documenting M.E.

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me…

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Infrared sauna

Hello!

It has been a while since I’ve written, mostly because I was struggling to keep my job and didn’t have the energy to try new things and write about them.

That has changed because I was prompted to try an infrared sauna by information on Dr Sarah Myhill’s website and having a massage at a place with a sauna.

It take energy (and money!) to try something new, invest in some hope but also be prepared for a crash.

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