These are the treatments that I have trialled over the past 6 months.
High Dose Selenium
I stumbled across this treatment on the Phoenix Rising forums after reading a post by ‘Hip.’ This forum thread is worth reading and can be found here. A high dose selenium protocol has several possible mechanisms of action for ME patients and it is difficult to determine which aspect of its properties helps some patients.
Selenium may be beneficial due to it:
- Having antiviral properties
- Being a strong antioxidant
- Leading to an increase in toxic metal excretion
It is also used by some of those with chemotherapy resistant cancer. The recommended dose of selenium for the ‘High dose selenium’ protocol is between 400-800 mcg. It is also imperative that the selenium is taken on an empty stomach to increase absorption. Yeast-free selenomethionine is thought to be the best specific type of selenium to take although other types of selenium may be more effective for certain individuals.
The risks of high dose selenium as a treatment include the possibility of selenium toxicity, although this normally occurs at much higher doses (2400-3000 mcg.) Some sources claim that exceeding 400 mcg per day can lead to selenosis. Although other sources state that 800 mcg is a safe maximum dose. What is also relevant is the period this treatment is taken for, as taking high dose selenium for greater than several months increases the risk of toxicity.
Anecdotally, I have read of several ME patients who have benefited from this treatment. The main symptoms that improve are cognitive impairment and a lack of energy. It may take close to 2 weeks before any improvement is noted. Some patients will experience side effects if they increase their dose past 400 mcg.
My experience with High Dose Selenium
During May 2014, I started with 200 mcg of selenium and over the period of a month, gradually increased this daily dosage upwards to 800 mcg. I experienced some minor side effects at this dose such as teeth grinding hence reduced the dose to 600 mcg which for me was a tolerable dosage. In total, I trialled high dose selenium for 2 months before stopping. I may have experienced some minor improvement in cognitive impairment over this period but it is difficult to definitively say there has been a mild improvement. Writing this now, one month after stopping this treatment, I feel the same as I did before starting the high dose selenium.
Since my last blog entry, I trialled butyrate for 6 weeks, starting in February 2014. This treatment can improve patient’s gut symptoms by creating T cells in the digestive system. It has the potential to reduce inflammation and improve the immune system. An article that discusses its benefit for inflammatory bowel diseases can be found here. Another article that highlights some of butyrate’s broad ranging properties can be found here.
I took a formulation with calcium magnesium butyrate. I didn’t notice any positive or negative effects associated with this treatment.
In my last blog entry here, I mentioned that I had tried 1200 mg of moringa tablets daily for a period of 1 month and that I had wanted to trial a higher dose for a longer period of time to properly assess this treatment. During February, I slowly increased my dose to 8 grams of moringa powder daily. After reaching this 8 gram dose, I had some days with slightly more energy and less pain than normal however this wore off after 5 days. I continued taking the moringa for 3 months in total however overall didn’t experience any negative or positive effects.
Far Infrared Sauna
Prior to March 2014, I had never heard of an infrared sauna. It was only when I stumbled upon this study that found near-infrared light to be beneficial to restless leg syndrome symptoms, that I started reading about infrared saunas and ME. The aforementioned study didn’t use infrared saunas but a separate device.
An infrared sauna essentially uses either far or near infrared light to create a heat sensation on the human skin. There are many claimed health benefits of infrared saunas and an online search will yield many anecdotal or supposed benefits. I am personally slightly sceptical of some of the claimed mechanisms of action/benefits. On the flipside, I do believe that infrared saunas have broad reaching and numerous positive effects. A brief search of pubmed indicates some of its positive effects. One study focused on ‘Chronic fatigue syndrome’ patients and found “Symptoms such as fatigue, pain, and low-grade fever were dramatically improved on two patients” and on another “11 patients with CFS, physical symptoms such as fatigue and pain improved, too.”
The main motivation for trying infrared sauna therapy was the high number of ME patients online that have noticed some improvement in their symptoms as a result of this treatment. What was doubly attractive to me was the novel treatment mechanism as opposed to my standard treatments involving orally digesting tablets. Some of the anecdotal reports of ME patients using infrared saunas claim the benefits feel somewhat superficial and short-lived however many patients have reported lasting improvements. It is also reported that ME patients tend to be able to tolerate infrared saunas as opposed to the traditional steam saunas.
Some of the potential/claimed benefits of infrared saunas are:
- Improving the immune system.
- Strengthening the cardiovascular system.
- Increasing blood circulation.
- Detoxing (reducing the chemical load of the body) Dr Myhill writes about this here.
- Cancer fighting effects especially when combined with another cancer treatment such as chemotherapy.
- Shared benefits with hyperthermia therapy.
Due to the sheer amount of sweat using an infrared sauna will produce, it is important to hydrate afterwards with electrolytes. It is also recommended to shower immediately after an infrared sauna session to remove the sweat from the body.
My experience with Infrared Saunas
I personally began using my infrared sauna at the start of April 2014. I had purchased a fairly cheap model online for $100 (not including shipping) that resembles something like I imagine the Bubble Boy from Seinfeld sits in. There are many different types of infra red saunas although most ME patients have chosen far infrared saunas as opposed to near infrared saunas. My sauna is portable and can be folded up into a fairly compact space.
I was slightly apprehensive about using the infrared sauna as at the beginning of my illness, I had felt significantly worse using a traditional sauna. My first session with the infrared sauna was on a low heat level for just 5 minutes. Afterwards I experienced nausea, light-headedness and dizziness. I continued with these 5 minute infrared sauna sessions for the next week and became suspicious that my blood pressure was dropping due to the infrared sauna sessions. I took my blood pressure and it was not deviating, much to my surprise. After approximately 10 days, the negative symptoms didn’t occur after an infrared sauna session. I gradually increased the amount of time I spent in the infrared sauna to 25 minutes, which is recommended by several sources to be the optimal time. I also use it 6 days a week. After every session, I come out drenched with sweat and I immediately have a very brief shower.
I have personally found the main benefit of the infrared sauna to be an increase in blood circulation especially immediately after using it. My peripheral circulation has also improved throughout the day. During this Australian winter, I have struggled with the cold weather less than my normal ME inflicted self, as after a sauna session, I remain warm for several hours. This ME blogger whose infrared sauna article I recommend states that their body temperature is elevated by about 1 degree for the 90 minutes following an infrared sauna session. I also find the infrared sauna increases my heart rate, simulating some of the benefits of exercise, something that my illness doesn’t allow me to do.
I will continue to use the infrared sauna for the foreseeable future, partially for the potential benefits and partially as I find it to be relaxing and a part of the day that I now look forward to.
Restless Leg Syndrome
Over the past 18 months, I have developed Restless Leg Syndrome (RLS.) Prior to developing this other illness with the name syndrome in it (I may have developed an aversion to things being labelled syndrome!) I imagined that RLS was simply a bit of restless energy in the legs and something fairly mild. First hand (or leg) experience has proven how very wrong I was. What originally occurred sporadically (around twice a month) now occurs every single morning at 6am. It causes insomnia, pain in my legs and arms and is fairly uncomfortable. I have tried as much as possible to avoid taking any prescription drugs for it as RLS targeting drugs are high in side effects and sometimes low in efficacy. I have tried a plethora of over-the-counter medications including iron tablets, molasses, apple cider vinegar as well as nightly Epsom Salt foot baths. I also recently bought a TENS machine that I apply to different parts of my leg every night for about 1 hour. If the TENS machine doesn’t work, I will succumb to trying some prescription drugs for the RLS.
It hasn’t been the worst period of my illness over the past 6 months and although many of the treatments I have tried have failed to yield any positive effects, I have largely escaped side effects. I will continue the infrared sauna therapy and have a new batch of treatments planned for the coming months that I will report on in my next blog entry.