It has been a lengthy period since my last blog. This entry will attempt to outline my ME related journey from the past 6 months.
23 and Me
Despite its name, ‘23 and Me’ doesn’t refer to Myalgic Encephalomyelitis but rather ‘me’ in the pronoun form. ‘23 and Me’ is essentially one of a number of genetic testing companies that provide an individual’s health and ancestory information from a saliva sample. I had this test performed earlier in the year. Some useful information can be gained from the test but to determine ME (Myalgic Encephalomyelitis) related information, one must dig deeper and insert the data provided into alternate websites such as Genetic Genie.
For the record, I have homozygous mutations for; COMT V158M, COMT H62H and CBS C699T. I also have heterozygous mutations for VDR Bsm, VDR Taq and MTRR A664A. The meaning of these mutations is quite detailed and beyond the scope of this hopefully brief blog entry. I am pleased that paragraph is behind me and I have now finished explaining 23 and me and ME regarding me!
My ME symptoms have been fairly static for several years until early 2013. I then experienced a range of strange symptoms that persist to this day. Since January 2013, I have experienced nausea on approximately 30% of days. I have also sporadically vomited since early this year. Another novel symptom I have experienced is gagging, often after brushing my teeth, smelling certain odours or coughing. Insomnia has also emerged during this period and I require prescription medication to gain sleep on 2 nights per week (average.) Something akin to Restless Leg Syndrome has also developed although this has occurred more rarely. The final novel symptom that I’ve experienced has been pulsing legs. This happens throughout the day but more frequently in the evening and is in rhythm with my heartbeat.
For 3 years I have experienced migraines/headaches on the same day each week (originally Mondays but now Wednesdays) despite changing all of the variables I can think of e.g. food, routine. The aforementioned eclectic symptoms have correlated with my migraine day however often fall on another day. I should also note that my previous blog entry explaining my reaction to Nimodipine, may not have been caused by the drug as I began gagging 1 week prior to the drug. There are many details and nuances contained within these symptoms however I will gloss over them and keep this explanation brief. In summary, I have been referred to a Neurologist and will see them in October.
As a result of the eclectic range of symptoms mentioned above, I stopped all of the tablets I take daily for my ME, in case a tablet was causing these symptoms. In the past, I had crashed if I had gone for two days without Fludrocortisone, I lacked energy if I stopped D-Ribose for a short period and overall felt that each tablet I took contributed something to me maintaining an ME equilibrium. It was therefore surprising that stopping every tablet recently didn’t result in a deterioration of my ME. On the flipside, my strange symptoms persisted however I was pleased to find that I wasn’t as dependant on these drugs as I had initially thought. I have since restarted most of these drugs as they are designed to maintain good general health. The exception is Fludrocortisone, which I haven’t taken now for four months. My reasoning for this is that Dr Cheney believes long term use of Fludrocortisone can exacerbate ME symptoms.
The supplements I have started to take since my last blog entry include Butterbur, CoQ10 and Vitamin B2. The rationale behind these is that there exist some studies indicating they are beneficial in preventing migraines. I have taken CoQ10 in the past on many occasions and B2 at a lower dosage in the past.
I saw an Ear, Nose and Throat Specialist during May 2013. Since the origin of my ME, I have coughed up excessive amounts of mucus and experienced significant nasal mucus discharge. This has involved me going through 2 boxes of tissues daily for many years. I had a cynical approach going into the ENT appointment as I had read many anecdotal reports of ME patients having no relief of sinus symptoms after seeing an ENT. The ENT determined from observation and a CT scan that I had severe nasal inflammation and one nasal chamber was very narrow while the other was large. He prescribed me the Corticosteriod, ‘Avamys nasal spray’ which has reduced the number of tissues I go through per day from 2 boxes to 1 box. I have also been referred to an Allergist.
I had a suspect mole on my thigh examined by a dermatologist in June 2013. The dermatologist cut it out and sent it to the laboratory. It came back as an ‘In situ melanoma.’ This means that the cancer fortunately hadn’t yet grown into the deeper layers of the skin. I had all of the skin around the melanoma cut out and now sport 20 stitches in my thigh. I opted to avoid any injected adrenaline during the surgery as I was uncertain as to its effects on my ME. It is somewhat ironical that I developed a melanoma as my ‘23 and me’ genetic testing determined that I had a significantly lower risk of getting a melanoma than the average person in my lifetime. Also my indoor and sedentary lifestyle would be conducive to avoiding melanomas. This should however be coupled with the fact that Australia has the highest rate of skin cancer in the world and prior to my ME I was an outdoors and active person.
In a previous blog entry here I documented the various rashes and spots that have emerged on my body since the onset of my ME. I questioned the dermatologist on the rounded spots located on my finger and toe joints. He explained that they are called knuckle erythema and suggested two causes. The first is that they were caused by rubbing against something however they are located on my feet and hand joints, not just in one location. They also emerged soon after my ME began. Finally, I haven’t done any activities that would have caused them. The second suggested cause for the knuckle erythema was an auto-immune disease which seems more likely to me, based on the timeframe of the emergence in tandem with the ME and autoimmune interconnectedness.
High Dose Thiamine
There exists a plethora of ME treatments that I have lined up and ready to trial. The one prohibiting factor for testing these treatments involves the weird symptoms I developed earlier this year. If I experience a side effect from any treatment I begin, it will be difficult to distinguish it from an extra symptom related to those I developed earlier in the year.
There is some discussion online at the moment regarding the treatment of high dose vitamin B1 (thiamine) as a potential Fibromyalgia and ME treatment. It is not seen as a panacea but like many other treatments, it may help some patients. A small study of three Fibromyalgia patients (http://www.ncbi.nlm.nih.gov/pubmed/23696141) found that all three experienced an improvement of symptoms after taking high dose thiamine. Subsequently, other ME and Fibromyalgia patients have since trialled high dose thiamine with mixed results. Patients tend to have an individual B1 dosage that is different to the dose other patients respond to. Finding this optimum dosage without exceeding it (and potentially experiencing side effects) is the challenge.
I decided to begin taking vitamin B1 as is widely considered to be low in side effects and is normally well tolerated. My daily dosing structure involved starting with 250mg and increasing this dose by 250mg every 3 days. I am up to 1000mg at present and yet to notice any symptomatic changes. The maximum dose I will trial (barring side effects) is 2000mg. Some articles about B1 treatment can be found here and here.
It has been a unique few months with my novel symptoms overshadowing my ME symptoms and ME treatments. I hope to report on my high dosage B1 trial and hopefully write about the other treatments I plan on starting in my next blog entry.