The Best Sleep Aids for M.E.

 
“Sleep is that golden chain that ties health and our bodies together.” –Thomas Dekker
 
M.E. patients are often nocturnal creatures- not by choice but as a consequence of their illness. It is a bitter irony that many of us feel the desperate need for sleep during the daylight hours but as soon as nightfall sets in, so does the insomnia or unrefreshing sleep. This blog entry will examine the myriads of potential sleep treatments that the ME/CFS experts of the world prefer. Following this, I will detail my experiences over the years with both sleep enhancing supplements and prescription drugs.
 
Sleep Treatments the ME/CFS Specialists Recommend

It is imperative that I mention that some of these specialists’ recommended treatments are sleep initiators while others are sleep prolongers.
 
Dr. Cheney

Dr Cheney is an advocate of Klonopin and likes using Doxepin Elixir drops in synchronicity with the Klonopin. He states that B12 in the form of hydroxocobalamin injections may help sleep, it taken at night. Magnesium also plays a pivotal part in Dr. Cheney’s sleep repertoire and he prefers it in the form of magnesium glycinate.
 
Dr. Teitelbaum

Dr. Teitelbaum’s approach towards patients’ sleep is multi-faceted. He emphasises that quality sleep is utterly fundamental so much so that his ‘SHINE’ protocol starts with ‘S’ for sleep. Dr. Teitelbaum thinks patients can get the greatest benefit from sleep aids by taking small amounts of as many different sleep aids as required to a maximum of “5 or 6.” He sells his own OTC sleep formula that contains many of the ingredients that he believes helps CFS patients sleep. The supplements Dr. Teitelbaum is an advocate of include; Suntheanine, Wild Lettuce, Jamaican Dogwood, Hops, Passionflower and Valerian. The medications he writes fondly of for sleep, in the order that he generally prescribes them for CFS patients are; Ambien, Trazodone, Klonopin, Gabapentin, Doxylamine (OTC), Carisoprodol, Doxepin, Cyclobenzaprine, Tizanidine and Zaleplon. He describes some patients needing to try different medications and other patients requiring a different order of trial to the above sequence.
 
Dr. Klimas

Dr. Klimas states that sleep improvement isn’t as easy as taking a magic pill. She believes that patients who wake up exhausted require a sleep study that takes place in a specialised sleep lab. The sleep study will determine if the sleep problems are caused by a characterised sleep disorder such as sleep apnea. The study will also document sleep patterns including the need for stage 3 and 4 sleep. Dr. Klimas believes treatment can then proceed following the results of the sleep study. When Dr. Klimas does prescribe sleep drugs, she avoids the likes of Ambien and Restoril believing that they don’t promote quality sleep, instead just instigating sleep. Dr. Klimas is mainly an advocate of Elavil and Doxepin. She also likes Flexeril and Klonopin.
 
Dr. Lapp

Dr. Lapp shares a similar penchant to Dr. Cheney for Klonopin used in tandem with Doxepin, both at a low dosage. He also emphasises that patients needn’t start with prescription drugs for sleep. He thinks milder sleep problems may be quashed by the use of; Valerian, Excedrin PM, Tylenol PM and Melatonin. Trazodone, hypnotic drugs and SSRIs are all sleep treatment possibilities according to Dr. Lapp.
 
Dr. Myhill

Dr. Myhill writes of numerous, non-tablet techniques to maximise the chances of a first-class sleep. She also uses a mixture of supplements and prescription drugs to improve her patients’ sleep. She is an advocate of; Melatonin, Valerian and Nytol. If these treatments prove to be ineffective, she tries prescription drugs including; Elavil, Surmontil, Sonata and Diazapam.
 
Dr. Enlander

Dr. Enlander emphasises the nuanced world of sleep problems and warns of caution when treating sleep apnea sufferers with sleep drugs. He often starts with a drug that is in his words “the least provocative” in Diphenhydramine. If this is ineffective, he commonly tries patients on Trazodone. Other sleep treatments that Dr. Enlander utilises include; Ambien, Sonata, Klonopin, Zanaflex or Flexeril.
 
 
 
Sleep Aids

Over the past few months I have taken 3 different sleep aids with the goal of improving my sleep.
 
GABA

GABA’s primary action in the brain is to tame the over firing of neurotransmitters. A potential problem with GABA supplementation for sleep is its inability to cross the blood-brain barrier. Due to this pitfall, GABA supplements may work through an alternate mechanism. This is through the GABA supplement’s ability to calm the body and hence reduce insomnia. A sublingual version of GABA may be more effective than the capsule form.
 
5-HTP

5-HTP is a version of the amino acid tryptophan and was found in two studies to improve Fibromyalgia patient’s symptoms. This study by Puttini et al. involved 50 Fibromyalgia patients taking 5-HTP for 90 days. Improvements were seen in the areas of; fatigue, sleep quality, pain, anxiety and the number of tender points. A ‘good’ or ‘fair’ improvement was seen in about 50% of patients. 30% of patients reported side effects but only one patient dropped out of the study for this reason.
 
This second study by Caruso et al. was double blinded and placebo controlled. 25 Fibromyalgia patients were given the placebo and the other 25 Fibromyalgia patients took the 5-HTP. The group given the 5-HTP were provided with 100mg three times a day for 30 days. Similarly to the previous study, improvements were seen in tender points, pain, sleep, anxiety and morning stiffness in the group taking 5-HTP. Although the placebo group also improved in sleep and pain measurements. 5-HTP is used by the body to make serotonin which may improve sleep quality. Serotonin syndrome is a risk if other treatments to increase serotonin are taken with 5-HTP such as SSRIs.
 
Suntheanine (L-theanine)

L-theanine is an amino acid and may improve sleep due to playing a role in increasing brain levels of GABA, serotonin and dopamine. L-theanine is responsible for the taste and calming effect of green tea. Dr. Teitelbaum is an advocate of L-theanine and recommends 50mg to 200mg before bedtime to improve sleep. He also writes that it can be taken several times during the day to improve anxiety. This study found 400mg of L-theanine to improve the sleep of boys with ADHD.
 

 
My Experience with these Sleep Aids

Over the past few months, I trialled each of these sleep aids.

I took 750mg of GABA for a period of a week and didn’t notice any effect on my sleep.

I took 200mg of 5-HTP before bed for a week and similarly failed to notice any effects.

I took a dosage of 300mg of L-theanine before sleep and 150mg upon waking during the night and this improved my sleep marginally. I have been desperate for any improvement in my sleep and hence I continue to take L-theanine every night although only 150mg before bed and 150mg when I wake during the night.
 
My Long Term Sleep Treatments

Sleep improvement is widely known as being a lynchpin in countless ME protocols. Over the past 10 years, I have woken up every morning feeling more sleepy and groggy than when I went to sleep the night before. There have been several exception to this, which I vividly recall- mornings when I have woken and felt well rested. These instances have occurred after I took; a Myers’ cocktail, TTA and on the last occasion Moringa Oleifera. 
 
The quality sleep these treatments provided me was only transient-lasting one or two nights. It is a curiosity that each of these treatments lacks a direct mechanism of action on sleep and I took them for ulterior purposes. I have also experienced insomnia for the past 4 years of my illness and continue to battle this.
 
There have been many treatments that I have taken to try and improve my sleep over the years. I have trialled:

• Elavil (in a low dose form) on several occasions. It perpetually induced next-morning drowsiness.
• Diazepam which I have rarely used and 1.25mg is sufficient to induce sleep for me. I only take this if necessary and have only consumed it once in the past few months.
• Low dose naltrexone for the past 5 years and I continue to take this. Its only effect on me seems to be that it has slightly improved my sleep length.
• Melatonin, long term and I only recently stopped this as it wasn’t having as much of an effect on me. It does however have multiple potential mechanisms of actions on ME symptoms and these studies emphasise its potential benefits.
• Valerian tablets, which are probably the most effective sleep aid for me and I continue to take them before bed and when I wake up during the night.

 
Currently my nightly sleep tablet regiment involves; low dose naltrexone, valerian and L-theanine. I also use nasal strips every night for my sleep.
 
“I want to go to sleep in my time machine and wake up eight hours in the future.” –Jarod Kintz

Dr. Brewer’s Protocol

Dr. Brewer has developed a protocol for treating mycotoxin involvement in ME/CFS. This protocol is dynamic and over the past couple of years has been modified based on patient response. The crux of his protocol involves patients taking either nasal Amphotericin B or a compounded Nystatin that is atomised before being absorbed nasally by the patient. In tandem with one of the aforementioned treatments, patients must take chelating PX which comprises nasal EDTA with a surfactant.
 
Specialised testing has ascertained that 93% (104/112) of CFS patients studied tested positive to at least one of three mycotoxin. In contrast 0% (0/55) of the healthy controls tested positive. This study can be found here.
 
Brewer et al. have written this paper probing the relationship between chronic illness and mold/mycotoxins. The paper theorises that the sinuses are the main reservoir of the mycotoxin hence most of the treatments are focused on this portion of the body. The paper continues on to state that indoor, water damaged environments are hot-spots for mycotoxin production. Detailed mechanism of action and case studies are also provided to support the argument of Brewer et al.
 
The success of Dr. Brewer’s protocol on his patients has also been impressive. A pilot study by him found that 56 of the 151 patients treated could not tolerate the Amphotericin B. 88 out of the remaining 94 patients noticed improvements- That equates in percentage terms to a staggering 93.6% of the ME/CFS patients having a reduction in their symptoms. Approximately a third of these 88 patients achieved remission. Since this study, Dr. Brewer has found the atomised Nystatin to have a better safety profile than the Amphotericin B.
 

 
The Patient Advocate has written extensively on Dr. Brewer’s protocol here, here and here. The Phoenix Rising forums also contains an extensive discussion of this protocol here. Within it are many anecdotal reports and experiences of patients whom have attempted this protocol.
 
ASL/TAG were originally the compounding pharmacies providing the Brewer’s protocol products (after a prescription is presented or mailed) however they recently went out of business. Woodland Hills Pharmacy in California and Albers Pharmacy in Missouri are now compounding the Brewer protocol medications.
 
 
My Experience With Dr. Brewer’s Protocol
 
I enquired with the American pharmacies that provide the substances required to complete Dr. Brewer’s protocol however they informed me that they don’t ship to Australia. I therefore decided to trial a modified Dr. Brewer protocol. This consisted of:

• A nebuliser used rather than an atomiser.
• Capsule Nystatin opened and some of the powder mixed with distilled water and later nebulised and inhaled nasally.
• A BEG nasal spray used that contained EDTA however no surfactant.
• Nebulised Argyntyn 23, nasally inhaled.

I began different portions of this treatment over a staggered period of time, beginning in March 2015.
 

 
The nebulised Argyntyn 23 affected my sleep and hence I only trialled this for a few days. I again started this a few weeks later but similarly, my sleep quality diminished. I tolerated the nebulised Nystatin and continued this treatment for 3 months. I persisted with the BEG nasal spray despite it causing mild yet continuous nose bleeds. Eventually, I determined that the BEG nasal spray was a double-edged sword- My sleep quality deteriorated whilst on it. Every morning I would wake at 4am and struggle to get back to sleep. Curiously, my restless legs syndrome stopped while I took the BEG nasal spray. After 2 months of the BEG nasal spray, I decided to cease the treatment and within days my sleep quality improved and RLS returned.
 
Overall, I had a very haphazard approach to the Dr. Brewer protocol, largely due to not being able to gain the identical ingredients he used on his patients. His protocol is also intended for long term use and my 2 months of simultaneously taking BEG nasal spray and nebulised Nystatin wasn’t long enough to determine its true effectiveness on me. Over the coming days I will post another blog entry detailing the other ME treatments I have trialled recently.

Ten years of M.E.

Today marks an anniversary for me with this illness. A decade ago to the day, my first symptoms emerged, although they were relatively mild at the time. This is my journey…

I have spent the last ten years of my life living with Myalgic Encephalomyelitis.

Prior to my illness, I would run around the suburbs of Adelaide. My rangy shadow at my feet, wind smacking my face, endorphins pumping through my body and the insatiable appetite for more. I would breathe in and everything would make sense. Running was put simply my raison d’être.

At the cruel age of 17, I began developing physical symptoms that gradually restricted me. My days of unbridled living and having free range roaming Adelaide were no more. I began studying astrophysics at university however my muddled brain started to become as nebulous as the stars I was studying. I switched courses to focus on the less intense universe of philosophy. After six months I became a university dropout.

Specialised testing ascertained that the blood wasn’t flowing freely around my brain and my immune system was impaired. I was thus diagnosed with Myalgic Encephalomyelitis (ME.) This name was all too familiar to me. I was the sixth person on my maternal side to be given a similar diagnosis. I had a list of symptoms that couldn’t be contained to an A4 page and this tally has only extended to the present.

To list my symptoms is monotonous. I consider them all to be various manifestations of one of pain’s faces. Like Plato’s Cave, pain cannot be described to someone void of it- one must suffer to understand this abstract word. My most curious symptom to those unfamiliar with this disease is ‘post-exertional malaise’ which restricts my walking ability to fifty metres and talking ability to short spurts. Like a video game character that is only given a certain amount of power before keeling over- I must ration my experiences.

Any tale of struggle wouldn’t be apt without a dose of wisdom imparted. From patience, to increased empathy, a decade of reflection was going to turn me into more of a philosopher than any university course would.

I started an online blog detailing my travails with ME. I discuss treatments that I’ve attempted, research that has emerged and my own personal journey. This is a branch into the outside world that lets me associate with similarly afflicted patients. In a self-referring twist, my ME only allows me to write occasional blog entries about my health. The very nature of this illness dictates that I read the latest medical studies to try and find a solution to my complex disease. ME is heterogeneous and ranges in seriousness. I have been served an overflowing plateful of severe.

Despite my disability, I am seldom bored and often recall Jean-Paul Sartre’s quote “If you are lonely when you’re alone, you are in bad company.”  I am in constant pain but despite this, I am joyous. My upbeat attitude living with a chronic illness is partly due to the hedonic adaptation of having become accustomed to suffering. I survive in some way due to living at home with a supportive family, having a dedicated doctor and living drenched in positivity.

Each day as the sun sinks, I hear the same echoes of runner’s footsteps outside my home. I look up to only catch a shadow- soon that will be my shadow again.

Sulforaphane, Nicotine Gum, Curcumin and VNS

Sulforaphane

Sulforaphane is a compound found in high doses within cruciferous vegetables, most notably broccoli sprouts.

Sulforaphane may benefit ME patients due to: 

• Being an antioxidant
• Being Neuroprotective
• Improving mitochondrial function
• Protecting against oxidative stress

Sulforaphane is currently being studied to see if it can reduce the bodies Th2 response. Th2 is typically thought to be high in ME patients and a common aim is to shift this part of the immune system to Th1.

A study published in late 2014 that was widely dispersed in the media found that sulforaphane benefitted children with autism. The study authors theorised that it benefited patients by inducing a “fever effect.” It should be noted that this was a fairly small study involving 44 males between the ages of 13 and 27.

There is quite a discrepancy regarding the amount of sulforaphane absorbed into the body depending on the form of sulforaphane or specific broccoli extract brand. Many autism patients have avoided broccoli sprout extracts instead favouring actual broccoli sprouts.  This autism forum discusses the best manner to absorb sulforaphane and what dosage is most appropriate. Both of these topics are the subject of quite some conjecture.

My Experience

I started taking broccoli extract capsules on the 7^th of January 2015 and gradually increased the dosage to 2.8 grams. I used a product that claims to be bioactive. In total I trialled this treatment for three weeks. The main symptom I noticed whilst on this treatment was intermittently feeling fairly warm. I am uncertain whether this was indeed the “fever effect” mentioned by the autism study authors or due to some other mechanism. I didn’t notice any other significant positive or negative effects as a result of taking the sulforaphane.

Nicotine Gum

Studies have shown that nicotine inhibits brain inflammation and it is thus considered to be neuroprotective. Nicotine treatment is used by some of those with ulcerative colitis, an autoimmune inflammatory bowel disease.  In contrast nicotine is often detrimental to those with Crohn’s disease, another inflammatory bowel disease. Schizophrenics commonly smoke cigarettes for a variety of reasons and it is theorised that the nicotine may alleviate some of their symptoms. Sensory gating is the brains ability to reduce sensory information. This problem is common amongst schizophrenics and nicotine may target this problem It has been thought that sensory gating may also affect ME patients.

Former ME/CFS specialist Dr. Goldstein writes

“Nicotine Patch or Gum: I have been prescribing nicotine in these forms for a long time. Nicotine is analgesic, probably by virtue of its stimulating secretion of dopamine and norepinephrine. It binds to the nicotinic cholinergic receptor and can also have profound effects on mood, energy, and cognition. An occasional patient will have worsening of symptoms with nicotine.”

Anecdotally, several patients online have reported an improvement in cognition as a result of taking nicotine. Other patients have reported feeling an increase in energy as a result of this treatment. Generally patients have noticed any effects of nicotine soon after taking it however one patient took nicotine for one week before being gifted more energy.

The risks involved with this treatment include nicotine’s ability to raise blood pressure, however low blood pressure is generally more predominant in ME than high blood pressure. Another danger of nicotine is its tendency to be addictive. Long term nicotine use may lead to periodontal problems and potentially hair loss. One ME patient reported vomiting almost instantaneously after taking nicotine. It is imperative to speak to your physician if you plan to commence nicotine treatment and to be aware of any further risks. Also starting nicotine at a low dose is of great importance.

My Experience

I began taking 1mg of nicotine gum on the 30^th of January 2015. Within a few minutes, I began to feel spaced out and a bit strange. My cognitive impairment may have slightly improved although I felt a bit distant. Most treatments I trial don’t give me any effects. My reaction to nicotine involved a peculiar sensation that occurred almost instantaneously after chewing the gum. My family described me as acting a tiny bit “buzzy” as a result of taking the nicotine. After a few hours, my experience began to normalise. I took 1mg of nicotine each day for three days in total and by the third day didn’t notice any weird sensations or other effects. I decided to cease the nicotine gum usage after three days due to the lack of positive effects and aforementioned potential long-term use side effects.

 

Curcumin

Curcumin is a primary ingredient in turmeric that is often used medicinally in extract form. It is generally poorly absorbed by the body.

Curcumin may benefit ME patients as it may:

• Improve HPA axis dysfunction
• Have anti-inflammatory and anti-oxidant properties
• Improve cognitive impairment.

A study also found that curcumin benefited mice with ‘CFS.’ The mice were subjected to regular 10 minute water immersion tests to induce fatigue. I should note my scepticism of these mice having “induced CFS.” The fatigued mice consuming curcumin experienced less pain, reduced fatigue and lower levels of oxidative stress

Anecdotally, Dr.  De Meirleir has in the past recommended curcumin to certain patients in combination with other treatments. Curcumin supplementation is generally low in side effects.

My Experience

I began taking curcumin capsules on the 13^th of November. I started a version of curcumin that supposedly crosses the blood brain barrier more effectively than standard curcumin. The brand also claims 65 times the bioavailability of generic curcumin. I began with 400mg and increased my dosage to 800mg. After a total of four weeks of taking the curcumin capsules, I failed to notice any positive or negative effects.

 

Vagus nerve stimulation

Vagus nerve stimulation (VNS) is primarily associated with treating epilepsy and treatment-resistant depression. It has also been linked to dozens of other conditions including MS and autism. Some theorise that the vagus nerve is directly linked to ME. This article explains a vagus nerve/ME theory in more detail.

There are multiple mechanisms to stimulate the vagus nerve. This study implanted fibromyalgia patients with a vagus nerve stimulation device and found that it may be a “useful adjunct treatment” for fibromyalgia. This procedure is quite invasive hence I was excited to read about a VNS method that involved a TENS machine. In essence, the TENS electrode is attached to the tragus part of the ear. This study found that TENS machine vagus nerve stimulation “can influence human physiology and provide a simple and inexpensive alternative to invasive VNS.”

My Experience

I was keen to test the TENS machine for VNS as it was an ulterior treatment method that didn’t involve swallowing pills. I trialled this treatment for two months but failed to notice any positive or negative side effects. I attempted to order the TENS clips used in the above study but instead could only order small TENS pads which I consider to be analogous.

My health- A 2015 Update

A long interval has passed since my last blog entry. This will explain some of the travails I have experienced over the past few months. Over the coming days I will post another blog entry detailing some of the treatments I have trialled recently.

A Pain in the Back

On the 30^th of November I slipped a disc in my back. Unfortunately, I am without a remarkable story as to what caused it. In fact quite the opposite is true, the most mundane of causes is responsible- I was simply sitting in a chair and I stood up. I saw sports doctors and a physiotherapist and was diagnosed with a slipped disc in my back.

Whenever I take medication for a condition not directly related to ME, I am always hopeful that it will improve an ME symptom. I was on a fairly high dose of Diclofenac for a period of a week. It was aimed at lowering my inflammation and reducing the pain associated with my slipped disc however failed to lower any ME related pains or symptoms. The back pain was fairly intense especially during the nights. I was on various pain killers for almost a month. Almost 2 months after the slipped disc, I still have some lingering back pain but I am significantly improved.

The Flu

During September 2014, I came down with the flu. I experienced four days of more acute symptoms, with a temperature hovering around 39° Celsius (102.2° Fahrenheit), occasional vomiting and the usual dose of flu symptoms. I spent the following four months trying to shake off a few milder yet persistently lingering flu symptoms. My parents were also hit by the same flu as I was. My Mum had a cough that lingered for a few months. I took quite an assortment of immunomodulators at different periods to try and reduce my lasting flu symptoms. These included

• Reishi mushroom tablets
• Immune punch 
• High dose elderberry extract
• Immune defence tablets
• Astragalus

I had been reluctant to try too many ME specific treatments from September 2014 to January 2015 as it would have been difficult to monitor what effects treatments were having versus residual flu symptoms.
Some of my cognitive impairment dissipated when I was in the acute period of the flu. I have noticed this phenomenon in the past on many occasions when I have contracted a virus or cold. My mental clarity improves moderately while my body fights the infection. I have also heard of multiple ME patients who have had a similar experience when they get a secondary sickness. My restless leg syndrome also vanquished for the acute period of my flu which was another oddity.

Wearing caps

Whilst I am on the subject of cognitive impairment, I should bring up a peculiarity involving caps and my brain fog. For the first time in years I tried wearing a cap several months ago. I only had it on for a few minutes which resulted in approximately two hours of severe cognitive impairment. A few weeks later, I wanted to make sure another factor wasn’t at play hence I attempted to don a cap again. This time, I made it as loose as possible and only placed it on my head for ten seconds. Again I experienced significant cognitive impairment for the following two hours. I have scoured the internet and am yet to find another case like this. If anyone also has this bizarre symptom, I’d love to hear from you in the comments. I can only speculate that the cap somehow restricts my already impaired cerebral blood flow.

Conclusion

Overall, my last several months have been sidetracked with non-ME health issues. I believe the lengthy duration of my flu is largely due to my already impaired ME immune system. I also believe my slipped disc is probably consequential of my sedentary state caused by ME. Overall, my ME health hasn’t deviated much and each day is very similar. The flu was only acute for a few days and this is a luxury compared with the lengthy illness that can be ME. My slipped disc also wasn’t pleasant but having something more treatable than ME was something I appreciated. My restless leg syndrome has improved during the past few months seemingly without intervention. Over the coming few days I will post a blog entry detailing the ME treatments I have experimented with over the past few months.

Rifaximin for M.E.

Rifaximin

Rifaximin (Xifaxan) is an antibiotic that is typically used to treat traveller’s diarrhea and hepatic encephalopathy. It is also sometimes used in Irritable Bowel Syndrome to combat bloating and flatulence. Rifaximin may also be useful in treating small intestinal bacterial overgrowth. It is generally low in side effects and very little of the drug is absorbed into the bloodstream.

 

Mechanism of Action for M.E.

There exist several potential mechanisms by which Rifaximin may help ME patients. The primary mechanism of action theory involves Small Intestinal Bacterial Overgrowth (SIBO.) SIBO is caused when the healthy bacteria that grow in our large intestine make their way to our small intestine. This can result in a range of gastrointestinal symptoms.

In this study by Dr. Pimentel, a lactulose breath test was used to test for SIBO.

3/15 (20%) of controls tested positive for SIBO,

93/111 (84%) of those with IBS tested positive for SIBO,

42/42 (100%) of those with Fibromyalgia tested positive for SIBO.

Interestingly, the degree of somatic pain felt by the Fibromyalgia patients, “correlated significantly” with the amount of hydrogen seen on the lactulose breath test. Previous studies have linked the amount of hydrogen on the lactulose breath test with the amount of SIBO.

Another study mentioned that SIBO is often associated with higher levels of intestinal permeability. This study therefore examined Fibromyalgia patients for intestinal permeability and found that they experienced significantly higher levels of it than the control group.

Rifaximin may also benefit ME patients as it balances the gut flora. In vitro, Rifaximin inhibited 90% of the 536 strains of anaerobic bacteria tested in this study.

It should also be mentioned that Restless Leg Syndrome (RLS) patient’s who tested positive to SIBO found symptomatic improvement in this study.

Some ME patients take Rifaximin with the sole purpose of treating IBS. This meta-analysis concluded that there is “accumulating evidence” indicating that Rifaximin is beneficial to IBS patients.

Rifaximin for which ME Patients?

Some ME/Fibromyalgia patients get a hydrogen breath test performed prior to commencing SIBO treatment while others have the philosophy that they will test positive anyway hence testing is fruitless. Anecdotally, some ME patients with no gastrointestinal symptoms seem to improve on Rifaximin. There is also anecdotal evidence indicating that some ME patients’ symptoms improve whilst on the drug and return upon completing the course of Rifaximin. This is perhaps due to the SIBO numbers not being completely wiped out whilst on the drug and flourishing again when the Rifaximin is discontinued. A number of these patients continue to take Rifaximin intermittently or long term. The main symptoms Rifaximin seems to improve in ME patients include; gastrointestinal symptoms, fatigue and cognitive impairment. Anecdotally, a reasonable number of ME patients have benefited from Rifaximin for at least some period of time.

 

Usage amongst ME/CFS Specialists

Dr. De Meirleir uses Rifaximin on patients based on test results, including this dysbiosis test. He sometimes combines it with other antibiotics depending on test results and recommends the Rifaximin be followed by a 23 day course of the probiotic VSL#3

Dr. Teitelbaum believes that all ME/CFS patients be at least tested for SIBO. He writes about his theories of SIBO here.

Dr. Peterson seems to prescribe Rifaximin to a number of his patients with some taking the probiotic VSL#3 after the Rifaximin course.

Dr. Myhill recommends Rifaximin to some patients. Although she has a different dosing strategy to most, involving 200mg 3x a day for 3 days followed by a maintenance dose of 200mg daily. She also incorporates a hydrogen sulphide urine test to monitor progress.  She elaborates on this here.

Side Effects

Several studies have indicated that the risk of developing antibiotic resistance to Rifaximin is low, especially when used for around 2 weeks, several times per year. Long term use of Rifaximin increases the possibility of building resistance to the drug.

Rifaximin is generally well tolerated and low in side effects. In a traveller’s diarrhea study, only 0.4% of patients had to discontinue Rifaximin due to side effects. In general, the most common side effects of Rifaximin tend to be gastrointestinal and include; nausea, flatulence and ascites. Other frequent side effects include; dizziness, fatigue and peripheral edema.

Dosage

There is a slight discrepancy regarding Rifaximin dosage for ME patients. Some specialists recommend 400mg 3x a day for 7-10 days. Others recommend 550mg 2x a day for 8 days. As mentioned above, Dr. Myhill recommends a lower dose while others recommend a higher dose of 550mg 3x a day for 14 days.

Obtaining Rifaximin

Rifaximin can be very expensive. A US patient with ME reportedly spent $800 on a 2 week supply, fortunately for them, the Rifaximin was effective. Only some insurance companies cover the drug. The high cost of this treatment has caused many in the ME community to purchase this drug from one of many online pharmacies.

Many specialists specifically recommend the probiotic VSL#3 to be taken after finishing the Rifaximin course. This probiotic is expensive and is most effective when it remains in a cold environment. It is therefore commonly shipped either refrigerated or with an ice-pack.

Rifaximin’s chemical structure

My Experience with Rifaximin

I obtained Rifaximin from an Australian compounding pharmacy for a relatively cheap price. When starting most treatments, I like to start out with a low dose. The nature of Rifaximin meant that I started out at the maximum dose of a 550mg capsule, 3x a day and I continued with this dosing structure for my entire 2 week trial. Beginning on the 20^th of October 2014, I took 1 capsule with breakfast, 1 with lunch and 1 with dinner. When I had ceased my 2 week course of Rifaximin, I commenced taking the probiotic VSL#3.

Results

Ultimately, I didn’t gain any significant benefit from the Rifaximin treatment.  I should stipulate that I do have gastrointestinal symptoms however these are much milder than many of my other symptoms. I experienced more vivid dreams while taking Rifaximin and I continue to experience these dreams of clarity, several days after stopping the antibiotic. I only realised post hoc, that dream vividness can be a side effect of Rifaximin. These clear dreams are in no way negative and as not much happens during my waking hours, it is nice to be ‘alive’ during the night. I also believe my Restless Leg Syndrome may have dissipated slightly while taking the Rifaximin although I am not confident of definitively drawing a cause-and-effect link in my case. I didn’t notice any negative side effects while taking the Rifaximin.

My ME Treatments- An August 2014 update

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.

 

 

Butyrate

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.

 

 

Moringa Oleifera

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.

 

 

Conclusion

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.

My ME Treatments- A January 2014 Update

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 300mcg of biotin and eventually increased this dosage to 600mcg. 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.

One Thousand Paper Cranes

 

 

“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.)

 

 

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.

 

 

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

 

 

 

An ME Update- August 2013

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.