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A lengthy period of time has again passed between my blog entries. This article will hopefully inform readers of the different treatments I have trialled over the past few months.

 

Equilibrant     

‘Equilibrant’ is Dr. Chia’s tablet formulation that contains oxymatrine in tandem with various immune modulators. Oxymatrine is an alkaloid extracted from the root of the Sophora plant. It has antiviral properties and is effective against the enterovirus, which many ME patients are thought to have. Dr Chia has found that approximately 52% of his patients have shown some sort of improvement after taking oxymatrine. I have written more extensively about oxymatrine here.

 

Four years ago, Equilibrant was unavailable to me hence I took the White Tiger brand of oxymatrine. There were some questions lingering about the purity of this brand of oxymatrine as well as my own concerns that I was on a lower dose than I needed to be on. As a result of these concerns, I recently trialled Equilibrant. I slowly titrated the dosage upwards, to a maximum dosage of 6 tablets a day. I didn’t notice any side effects as a result of the Equilibrant (when taking the oxymatrine 4 years ago, I felt dizzy.) I also failed to notice any positive effects.

 

Biotin

Biotin is a coenzyme also known as vitamin H and vitamin B7. There exist several anecdotal accounts online of biotin greatly improving patients’ ME/CFS. Biotin deficiency has many shared symptoms with ME. Biotin may also improve the supplementer’s nail and hair growth. I started taking 300mg of biotin and eventually increased this dosage to 600mg. I stopped taking the biotin after 4 weeks after I experienced an increase in insomnia based symptoms. I am unsure if this was related to the biotin or not. I didn’t notice any benefits derived from taking the biotin.

 

Moringa Oleifera

Moringa Oleifera is the name of a tree whose leaves, seed pods and roots can be harvested and used medicinally. It has many potential mechanisms of action to improve ME patients’ symptoms. A list of the medical based studies highlighting Moringa’s properties can be found here. The Neuroimmune Disease Alliance funded a trial of Moringa Oleifera on ME/CFS patients, to be run by the Open Medicine Institute. This study has been put “on hold” due to the manufacturer of the specific Moringa product that was to be used in the study changing its formula.

 

There is some contention regarding the dosage of Moringa for medicinal purposes. The source listed above states that the optimal dose for a 200 pound person is 2100 to 2900mg. The brand of Moringa that I took, recommended a daily dosage of 3600mg. Other sources, including an online doctor, recommend 400mg a day. I decided to begin at 600mg and increase to 1200mg. I took the Moringa for only 1 month and didn’t notice any positive or negative side effects. In the future, I may try taking Moringa again, this time in powder form, at a higher dose and for a longer period.

 

High Dose Thiamine

In this previous blog entry, I mentioned that I was taking high dose thiamine, also known as vitamin B1. I eventually increased my dosage to 2000mg. In total, I took this treatment for 2 months and failed to notice any positive or negative effects.

 

Treatment for ‘Crashing’

In a blog entry from 3 ½ years ago, I wrote about How to gain relief from ‘Post-Exertional Malaise.’  I recently realised that I hadn’t blogged about the most effective treatment I have stumbled across for PEM since I wrote this article. This treatment is frozen Hydralyte iceblocks. I know of some ME patients who benefit from Hydralyte in liquid form when they have crashed however I find it to be many times more effective in iceblock form. I would be interested to hear if any other ME/CFS patients have tried this treatment when they have crashed.

 

Dust Allergy Treatment

My persistent and abundant coughing up of mucus resulted in me being referred to an ENT who prescribed me Avamys (a corticosteroid nasal spray.) This has reduced the amount of tissues I require each day to around ¾ of a box. I was then referred to an allergist who performed a skin-prick allergy test and determined that I had a severe allergy to two types of dust. He recommended that I visit the allergy office weekly for several years to have allergy immunotherapy injections however the severity of my ME prohibits me from making this regular outing. I instead opted for sublingual allergy drops, which I must take for several years. I have been on these drops for 3 months to date and I am yet to notice any reduction in allergy based symptoms however it often takes years to notice symptomatic change.

 

Eclectic Symptoms

In a previous blog entry, I mentioned that since January 2013, I had experienced a range of novel symptoms including; vomiting every few days, consistent nausea, gagging, insomnia, restless leg syndrome, weekly migraines and pulsing legs. Somewhat in contrast to the static nature of my ME mentioned throughout this blog, I am pleased that these weird symptoms have for the large part disappeared. The weekly migraines may have dissipated thanks to taking; butterbur, vitamin B2 and CoQ10 for the past 9 months. The other symptoms may have been related to the migraines or perhaps part of the rollercoaster that is ME.

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Do not go gentle into that good night.

Rage, rage against the dying of the light.” – Dylan Thomas

 

The art of folding paper has always been one skill that I have lacked and probably for that reason, despised. Many years ago, I held a job at a retail store and I was banned from gift wrapping the customers’ presents. The patience and delicate touch required for this trivial task were lost upon me, resulting in hurriedly, asymmetrical and skewed wrappings. I was subsequently prohibited from this Sisyphean task much to my delight.

 

Fast forward to six months ago when I stumbled upon an article about two mathematically unique structures, created by folding paper. These are known by their jargon mouthful names- hexaflexagon and trihexaflexagon. Each of these geometric peculiarities has the properties of being a hexagon and when folded correctly, they reveal hidden faces. I began making this shape and found it to be relaxing and almost meditative. I repeated this task many times to the point that I now have more trihexaflexagons than I’ll ever need (the amount you will ever need is zero.)

 

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Leo Tolstoy once wrote If there are as many minds as there are men, then there are as many kinds of love as there are hearts.” To extend this metaphor, “There are as many types of ME as there are ME patients.” I am fortunate enough not to have been affected with reduced dexterity in the hands. I can’t do vigorous movements however I am able to gently paint, draw, fold etc. I know of many ME patients who haven’t been granted this luxury. I am a great believer in making the most of what freedom you have, rather than dwelling upon what you are deprived of. This illness has robbed me of the ability to talk for any useful length of time, walk any meaningful distance and thrust upon me many other prohibitions. It has however granted me the use of my hands.

 

The folding process of the hexaflexagons drew flashbacks to my school days during which the class learnt of the story of Sadako Sasaki and the thousand origami cranes. She was a Japanese school girl affected by the radiation emitted from the atomic bombing of Hiroshima. The story continues that she was inspired by the Japanese legend which states that anyone who creates one thousand origami cranes will be granted a wish by the crane. Sasaki developed leukaemia and one version of the story states that she folded 644 cranes before dying. Her classmates folded the rest of the cranes for her. Another version of the story claims that she did reach one thousand cranes but her wish failed to come true.

 

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My school teacher after recalling this story taught us the skill of folding a paper crane and much to my dread at the time, forced each of us to make one. At school I would often work using a quid pro quo system with other students. They would make something technological or requiring hand dexterity for me and I would help them with some other work. Unfortunately, on this occasion, I was made to fold this paper crane myself. My end creation was easily the most disfigured crane in the class, perhaps having more semblances to a scrunched up piece of paper than a crane.  

 

After recalling my childhood crane mis-creation, I moved on from trihexaflexagons to paper cranes. I started coincidently on Hiroshima day this year. I gently folded one after another and found the process almost meditative. The daily process involved me folding a few cranes a day while listening to podcasts. After realising that my ME was allowing me to continue with this task, I set a goal of one thousand cranes, a handful of cranes a day. I saw it as almost an act of defiance and even rebellion against this illness. Some days I was too sick to make any cranes and other days I would fold 6 cranes. The process of repetition gradually improved the quality of the cranes, from Picasso esque to neatly folded and near symmetrical.

 

For this entire period of time, I used white, fairly large paper. The larger the paper, the longer it takes and harder it is to fold a crane. After passing 280 cranes, all folded with white paper, my Mum bought me specialised smaller origami paper that had the colours of the spectrum engrained within it. The change of paper caused me to fold the cranes with renewed speed and the colours provided some mental stimulation to motivate me further. After several months folding, I finally laid the last crease on my one thousandth paper crane. The photos seen through this blog entry are all of my thousand paper cranes!

 

“However vast the darkness, we must supply our own light.”-Kubrick

 

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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!

 

Eclectic symptoms

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.

 

Tablets

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.

 

ENT

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.

 

Dermatologist

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.

 

Conclusion

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. 

Nimodipine- The Results

Nimodipine

In my previous blog entry ‘here’ I discussed Nimodipine as a possible ME treatment. I began taking this treatment on the 23rd of January 2013 and I ceased taking it on the 14th of February 2013. I did not gain any noticeable benefit from the drug.

 

Dosing structure

For the most abundant indication of Nimodipine, post stroke cerebral vasospasm, patients take up to 540 mg of the drug daily. Dr. Mason Brown recommends that ME patients start with 7.5 mg of Nimodipine. Other ME sources suggest that patients gradually increase the dosage up to a maximum of 60 mg daily. I began on the recommended dose of 7.5 mg (1/4 of a tablet) taken in the morning however this resulted in me vomiting in the evening (approximately 12 hours after taking the tablet.)

On day 2, I lowered the dosage to 3.75 mg (1/8th of a tablet.) I continued taking this dosage for 2 weeks without vomiting. I then reattempted to bump the dosage up to 7.5 mg however I began vomiting, peculiarly, 24 hours after taking the tablet. I reduced the dosage again to 3.75 mg and continued on this level for 1 week. I then, even more strangely than the previous delayed vomiting episode, began vomiting 24 hours after taking a 3.75 mg dose that I had comfortably taken for 3 weeks! This vomiting extended into the afternoon-it started 24 hours after taking my standard dose of Nimodipine and I vomited again 6 hours later.

 

Mysterious Cause

I was fairly confident in establishing causality between the 7.5 mg dose of Nimodipine and my vomiting (albeit delayed.) What perplexed me was vomiting 30 hours after I had taken the dose I had regularly taken. Nimodipine has a half-life of 8 hours and reaches its maximum blood concentration in the body 90 minutes after consumption.

I tend to be fairly impervious to drug side effects unlike many other ME patients. Only a handful of drugs (out of scores) have caused mild side effects in me (excluding my dreaded T3.) The only other drug I have taken that has led to vomiting has been Ergoloid Mesylates. This drug is also interestingly aimed at increasing cerebral circulation. The vomiting episodes I experienced at the mercy of Ergoloid Mesylates occurred within minutes of consumption which makes the Nimodipine based vomiting even more bizarre. Vomiting is considered a possible side effect of Nimodipine.

 

Side Effects

Other than the aforementioned vomiting, I experienced nausea, facial flushing, grogginess and an increased incidence of crashing while taking the Nimodipine. I did not notice an improvement in any of my ME symptoms while taking the drug

 

Conclusion

Before I decided to cease taking the Nimodipine, I ordered some Ginkgo Biloba and Evening Primrose Oil. Dr. Brown recommends that ME patients take these supplements while on the Nimodipine. I will take both of these treatments despite stopping the Nimodipine. I have taken Ginkgo Biloba several years ago and may have taken Evening Primrose Oil before in some compounded formulation, alas at a lower dosage.

Nimodipine for ME

Nimodipine is a dihydropyridine calcium channel blocker that was originally developed for the treatment of high blood pressure. Post stroke cerebral vasospasm is now the main indication for Nimodipine usage with dosages used of up to 540mg per day. It is also sometimes used to improve cognitive function in dementia patients and to lessen the pain associated with cancer.

 

Nimodipine’s possible symptom effects on ME patients

Nimodipine’s primary usage in ME patients is to improve blood flow in the brain.

                                                                                                                                                                                                                                                      Nimodipine may secondarily:

  • Increase energy levels
  • Increase exercise tolerance
  • Improve mental clarity
  • Improve orthostatic hypotension
  • Improve migraines

                                                                                                                                                                                                                                                                   Dr. Goldstein performed a study to compare the SPECT scans of CFS patients prior to and post Nimodipine treatment. He found Nimodipine improved patients’ SPECT scans.

 

Verapamil, another channel blocker that works through an alternate method to Nimodipine, was studied in 25 CFS patients. It improved the patients’ immune systems and memory while reducing fatigue and pain.

 

 ME/CFS Specialists’ opinions on Nimodipine

The Canadian ME/CFS Guidelines suggests the use of Nimodipine as it acts “primarily on the cerebral circulation.  Improves mental clarity in some but not all patients with ME, but may also have a global effect to increase relaxation, reduce fatigue, decrease tender points, and improve exercise tolerance.  Common side-effects include hypotension, nausea, headache, bradycardia, skin rash, and peripheral edema.   Start with 30 mg.  Check effect on blood pressure.  Gradually increase to 60 mg twice a day as tolerated.”

                                                                                                                                                                                                                                                                   Dr. Mason Brown has seen many of his ME/CFS patients improve with Nimodipine usage. He writes, “Nimodipine helps twenty per cent (of ME/CFS patients) very quickly, another twenty per cent over six months, and all others to varying degrees over a period of time.” He improved his own health to 95% with Nimodipine usage as a treatment for his ME/CFS. He states “The work of nimodipine is at least fourfold: to release the backlog of neurotoxins and waste products from the brain, to open up the brain circulation, to allow in oxygen and nutrients to enter and to help cognitions, pineal, hypothalamic, and pituitary function.”                                 

                                                                                                                                                                                                                                                                   Dr. J. Goldstein, now retired, specialized in the treatment of ME patients in California.  He used Nimodipine as a primary treatment for M.E. and has called it “one of the most useful treatments for ME/CFS and Fibromyalgia.” He also writes, “About 40% of CFS/FM patients taking nimodipine experience relaxation, increased energy, a decrease in tender point sensitivity, improved exercise tolerance, and enhanced mental clarity….  Nimodipine has been shown to release dopamine, serotonin, and acetylcholine…. Tolerance does not develop to the vasodiliatory effects of nimodipine, but sometimes does to its amelioration of CFS/FM symptoms.”  He recommends taking 30mg to 60mg 3 times a day. 

                                                                                                                                                                                                                                                                   Dr. J. Teitlebaum suggests that CFS patients take 30 mg of Nimodipine 1 to 4 times a day. 

                                                                                                                                                                                                                                                                         A report of accounts of Nimodipine usage in 13 ME patients found four of them did not receive any benefit.  The other nine all had improved mental clarity or general functioning; half of them achieved functioning of 50% to 100%.

 

Side Effects

The FDA has classified the side effects of Nimodipine based on doses every four hours, with each dose being 90mg (far higher than the recommended ME/CFS dose.) Based on this classification, less than 1% of the group experienced adverse effects. The most common side effects of oral Nimodipine are dizziness, light-headedness, flushing or swelling of the ankles/feet. Some patients with severe ME start with 1/16th of a tablet of Nimodipine to attempt to mitigate side effects. Grapefruit juice should not be consumed while taking Nimodipine as it may elevate blood levels of the drug.

                                                                                                                                                                                                                                                                   Dr. Chaudhuri and Professor Behan from Glasgow found many of their ME patients on Nimodipine to experience hypotension.  They concluded that it partially improved patients’ myalgia however the high incidence of hypotension caused them to cease using the drug.

                                                                                                                                                                                                                                                   Nimodipine is a prescription drug that is fairly expensive. It also has many drug interactions. A similar treatment to Nimodipine, that some patients may prefer for various reasons, is called ‘Nifedipine.’ Discuss the potential positives and negatives of Nimodipine with your doctor before taking it.

 

 

 Clonazepam

In my last blog entry I discussed my progress with the drug, Clonazepam. I began taking this treatment on May the 28th 2012 and ceased taking it several days ago. I did not gain any noticeable positive effects from the drug. Prior to taking Clonazepam, I was cautious about using it long-term due to it being troublesome to ween off and because of its potential extended usage side effects. Despite this, the primary reason I stopped taking Clonazepam was my vulnerability to ‘crashing’ over the past 2 months. It may be a spurious similarity that I was taking Clonazepam and ‘crashing’ more frequently however I weighed up all of the above evidence and decided to cease taking the drug.

                                                                                                                                                                                                                                                                       I was only on a miniscule dosage of 0.125mg and I was able to successfully mitigate this dosage over the period of 2 weeks. This did involve reducing the quarter of a tablet dosage of 0.125mg into fractions of a tablet that resembled grains of sand! Overall, I didn’t experience any definitive positive or negative effects from the Clonazepam nor did I struggle in the process of stopping this drug. Once I stopped the Clonazepam, I seemed to gain slightly more energy suggesting that the Clonazepam may have potentially been responsible for my last 2 months of increased ME symptoms.

                                                                                                                                                                                                                                         Imunovir

Inosine

During 2009, I took Imunovir’s over-the-counter cousin Inosine however this didn’t have any effect on me. Dr. De Meirleir believes that the nutritional supplement Inosine is as effective as the prescription version, inosine pranobex (Imunovir) although this is contentious. Inosine is the active ingredient in Imunovir.

 

Mechanism of Action

Imunovir may benefit ME patients due to its potential as an:

Antiviral

  • It may treat active herpesvirus infections.

                                                                                                                                                                                                                                      Immunomodulator

  • It may lower the inflammatory cytokine IL-10 and raise the cytokine IL-12 which in turn may shift the immune system from Th2 dominant to Th1 dominant. Many ME patients have a Th2 dominant immune system.           
  • It may increase NK cell function and number which are often both deficient in ME patients.
  • Imunovir could potentially increase CD4+ T cells which may be reduced in ME patients.

 

Study

A small study on inosine pranobex, performed by Diaz-Mitoma et al. found that it benefitted 6 out of 10 CFS patients after 28 weeks.  In those patients who improved on the drug, their CD4+ T cells and NK cells increased dramatically. The full study can be found here.

                                                                                                                                                                                                                                                                   My experience with Imunovir

I began taking Imunovir tablets on the 17th of October 2012. I am following a pulse-based dosing schedule while taking Imunovir. This involves taking 6 tablets on Monday, Wednesday and Friday while taking only 2 tablets on Tuesdays and Thursdays. On weekends I don’t take any tablets. I will follow this schedule for 2 months, cease the drug for 1 month and then resume the drug for 2 more months. I haven’t noticed any positive effects from the Imunovir yet however I will report fully on my progress when I complete the above dosing schedule.

                                                                                                                                                                                                                                                        Imunovir may increase uric acid levels and therefore should not be used by those with gout.

Clonazepam

Clonazepam is a benzodiazepine that has polarised those ME patients who have taken it. Its affects seem to be more exaggerated than run-of-the-mill treatments. Anecdotal reports online indicate that a plethora of ME patients haven’t been the same again since starting Clonazepam. On one end of the scales, reports litter the Internet of those who list Clonazepam as their more effective treatment for ME, in some instances reaching remission (or close to it) after taking it. On the other end of the scales, Clonazepam has caused a number of patients to have their condition deteriorate significantly. In certain cases causing long term, negative side effects. Other patients have found it difficult to ween off the drug.

                                                                                                                                                                                                                                                   Mechanism of Action

The primary reason I trialled Clonazepam was to mitigate the consequence that over-stimulation has on me. This over-stimulation can take the form of many people being around, exciting events, lots of action and essentially anything that my brain can’t solely focus on. Clonazepam may solve this symptom due to potentially lowering Central Nervous System excitement.

                                                                                                                                                                                                                                                      Clonazepam may also help ME patients through its mechanism of action as a

  • Sleep aid
  • Energy enhancer
  • Muscle relaxant
  • Dysautonomia treatment
  • Neuroprotector
  • Restless Leg Syndrome Treatment

 

The Internet’s tributaries are scattered with anecdotal reports of ME patients and their Clonazepam experiences. Based on these recounts, I was more cautious and worried about taking Clonazepam than any other treatment I have ever tried.

A decade old article by Dr. Cheney that portrays this treatment in a positive light: http://www.prohealth.com/library/showarticle.cfm?libid=8021

An informative article about the potential pros and cons of Clonazepam can be found here:

http://forums.phoenixrising.me/index.php?threads/the-best-drug-for-me-cfs-the-other-side-of-klonopin-a-patients-story-and-a-survey.18338/

 

My Experience

I began my Rivotril (the Australian version of Clonazepam) trial on the 28th of May and am continuing to take this drug. I currently take the low dose of 0.125mg in the morning. Higher doses cause me to experience drowsiness, as do night time doses. I haven’t noticed any significant or even definitive positive effects from the Rivotril. Since commencing the drug, several people have independently said that I seem to have slightly more energy than my normal ME self. Introspectively, I don’t deem myself to have more energy however I am also aware that it is often difficult to gauge long term, mild improvements in oneself. I haven’t noticed any negative effects from taking the Rivotril either.

 

When my Heart Skipped a Beat

Over the past few years I have experienced, on an intermittent basis, a heart related symptom. This entails my heart stopping for several seconds before resuming its metronomic rhythm. When I began testosterone treatment earlier this year, this symptom became more common (occurring several times a day.) I visited a Cardiologist in May 2012 and had an Echocardiogram performed. The Cardiologist concluded that I had an Ectopic Beat however in the absence of structural damage to the heart, he was not concerned by it.

                                                                                                                                                                                                                                                                       I queried about the size of my heart as shown by the Echocardiogram and was told that I have an average sized heart. This somewhat surprised me due to my sedentary nature, thrust upon me by my illness. I was doubly taken aback due to the fact that studies have shown many ME patients to have small hearts. I am currently unperturbed by this symptom, partially due to its frequency having diminished over the past 2 months.

                                                                                                                                                                                                                                                 Diary

I began keeping my first diary at the age of 7. I had an obsession with the Guinness Book of Records and had believed the most obtainable record for me to break was that of the longest kept diary- 91 years. Three days after commencing my diary, I had stopped writing in it. It later dawned on me that I had an affinity for one day breaking a record that was not matched by my impartiality for diaries. Fast forward many years to May 2012 and I have begun writing my second ever diary. Every day I evaluate the pain I have suffered for that day, relative to an average ME day for me. This produces a number which is not derived from a standard ME disability scale but rather my own system. I also write a few sentences describing any aberrations in the day, any symptom variations and any medications that I have started or stopped. The purpose of my ME diary is to discover any symptom patterns, determine treatment efficacies more objectively and ultimately gauge my ME in a more scientific manner.

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