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Rachel M.'s Twitter Updates

Specialist letter to accept GPs referral arrived more than 2 years after the patient passed away... http://t.co/D958L8UN 244 days ago
tying to familiarise myself w/ daily nutrition needs for me & their purpose. Then, analyse what food/supplements I need to add or delete. 246 days ago
18 Gentle Muscle Stretching Exercises (Part 1) - Get Well From ME (CFS) http://t.co/AN2i6gvn via @youtube 249 days ago
@grovesmedia Good luck! :D 249 days ago
@GilesMeehan LOL. You need to come to Australia to catch up with the missed summer. :D Second thought... It may be too hot & humid for you. 249 days ago
 

Nutritional Supplements for ME

Posted Sep 22 2011 12:19pm

I allowed myself to try nutritional supplements this year. Since money is very tight, I’m not sure if I could afford them continuously. At the end of this year, I have to decide if I keep taking them or have to stop. It would be a tough one because I’ve noticed benefit in taking them.

Thankfully, the strong Australian dollar allows me to personally import the quality supplements that are priced affordably at the first place. Each dose is slowly adjusted based on experience.

I selected supplements from Dr Sarah Myhill’s recommendation, Dr Teitelbaum’s Treatment Protocol, and recommendation from my friends and Dr TL. (I made a list of website reference at the end of this post.)

These are what I’m taking and its intermittent analysis.

.

Co-enzyme Q10 (Co Q10)

I was taking 200 mg (100 mg x 2) a day. Dr TL gave me high dose samples to increase the dose. With 300 mg a day, I noticed the slight improvement in my energy level. I started taking 400 mg a day to see if there is more room for improvement.

Dr Myhill prescribes between 200 mg and 600 mg a day to her patients based on their blood test result. Since there is no such test available for me, I’m just going with experience.

Vitamin D3

Initially started with 1,000 IU a day as treatment for low blood Calcium and low Vitamin D3. Despite of current daily recommended intake of Vitamin D3 is 400 IU, researches are now suggesting that it needs to be adjusted to 1,000 IU a day. And, it can be safely increased to 4,000 IU a day. It may be increased to much higher dose (something like 10,000 IU or 50,000 IU) for short period of time or based on patient’s condition & needs.

To me, the noticeable benefit of taking Vitamin D3 is its effect on mood. I’ve adjusted the dose to stabilise my mood and it has reached 4,000 IU a day. I double the dose while my mood is struggling.

Melatonin

When Circadin (2mg Melatonin) became available as prescription only medicine in May 2010 in Australia, I tried it first time. Since I cannot take pharmaceutical sleeping aid for my serious chronic sleep problem, the relief it gave me was just amazing. I could fall asleep when I’m ready and I wake up in the morning. My reversed sleep cycle has adjusted to reasonable cycle.

As I cannot afford Circadin (it costs about $40 for 3 weeks supply), I’m personally importing Melatonin from overseas. I don’t understand why it has to be such an expensive prescription only medicine in Australia, while it can be purchased as nutritional supplement in other countries and researches on melatonin supplements were concluded as safe.

Currently, I’m taking 3 mg at bed time.

D-Ribose

I take 1,700 mg (850 mg capsule x 2) a day. While I’m checking the information, I realised I need to increase the dose to 10,000 mg (5,000 mg x 2) or (6 capsule x 2) a day. I better talk about this properly later.

I believe the current dose is still giving some benefit, so instead of going all the way to 12 capsule a day, I might slowly increase the dose and observe. It might also slightly reduce the severity and length of Post Exertional Neuroimmune Exhaustion (PEN-E) or payback.

Recently, I’m experimenting to take extra capsule before I undertake energy demanding activities, such as cleaning.

I use capsule form as it is easy for me to take it regularly. Many people use power form and take it in their tea or coffee as it is a form of sugar.

L-Carnitine / Acetyl-L-Carnitine

I’m currently taking 1,000 mg (500 mg x 2) L-Carnitine a day. I’m not sure if this is helping, however, it seems helping other supplements work better for me. I’ve heard that Acetyl-L-Carnitine is more effective than L-Carnitine. When my current L-Carnitine finishes, which is very soon, I will switch to Acetyl-L-Carnitine and see if I feel any difference or improvement.

Magnesium

I’m taking 800 mg (400 mg x 2) a day. Someone suggested the way to figure out the dose I need is to increase the dose slowly and stop it when I get diarrhoea. Magnesium seem high demand mineral to my body.

I also found the combination of Magnesium supplements and Akineton (medicine for Parkinson’s Disease) dramatically reduced my bad muscle cramp problem. When I overdo or under virus attack, I still get painful and joint-locking cramps. Generally, it is under control with the combination.

Thiamine / Vitamin B1

I’m taking 100 mg a day. I take extra tablet when I notice struggling cognitive function, sensory stimuli overload, or brain fatigue.

This is a prescription supplement as I have Thiamine Deficiency. My blood was tested when I was having dementia-like memory loss. Recently, I run out of the supply and it caused my nervous tension to highlight, such as noise intolerance, photophobia, and sensory stimuli overload.

Multi-vitamin & Minerals

I take this as a gap filling for possible nutrition deficiency. I buy this supplement from supermarket when they are on special. Dr TL support the idea, and suggested it doesn’t have to be expensive brand.

Fish Oil

I also buy this from supermarket when they are on special.

Colostrum

Since Dr TL is very keen for me to try Colostrum, I ordered some to give it a try. I’m still waiting for them to arrive. It is often used by sports people to enhance their peak performance level and reduce the training recovery time.

Colostrum also seems to be beneficial for immune system and gastrointestinal functions.

Others

I’m currently considering other supplements. I hope I’m taking enough between Multi-vitamin & mineral supplements, prescription electrolyte supplement, vegetable and apples I eat every day. However, it is possible that I’m not getting enough supply without supplements.

  • Vitamin C
  • Vitamin B Complex
  • Iodine (As I’ve cut down salt intake)
  • Potassium

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Reference Websites:

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