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Gabapentin
 
Gabapentin is an anticonvulsant drug primarily used to treat epilepsy that may be helpful to some ME patients.
 

Gabapentin may benefit ME patients due to:

  • Reducing general pain
  • Thwarting neuropathic pain
  • Minimising fatigue
  • Relieving muscle cramps
  • Enhancing sleep quality
  • Stopping restless legs syndrome
  • Improving bladder function
  • Having potential neuroprotective properties
  • Decreasing multiple chemical sensitivity symptoms

 
It was originally thought that Gabapentin primarily worked due to its effects on the GABA neurotransmitter hence inducing calmness and sleep. It is now thought that Gabapentin’s mechanism of action is due to it being a calcium channel blocker. As a consequence, it may reduce the secretion of certain neurotransmitters that cause pain and stimulate the brain. Anecdotally, many ME patients have gained more energy as a consequence of taking Gabapentin. Unfortunately, in a reasonable portion of these cases, the effects seem to have gradually worn off.
 
 
ME specialists and doctors opinions’ on Gabapentin

Dr. Goldstein listed Gabepentin among his five most favoured treatments for those with ME. The others being; Nimodipine, oxytocin, intravenous lidocaine and baclofen. Dr. Goldstein believed that Gabapentin may regulate the neurotransmitter imbalance in the brains of ME and fibromyalgia patients. He recommended a low dose of 100mg-800mg, stating that effects should be noticed in the timeframe between 30 minutes and 8 hours. If tolerated, he would recommend the dose be slowly titrated upwards to a maximum dosage of 5000mg per day (e.g. 3 doses per day totalling 5000mg.) Dr. Goldstein found that a fairly high portion of his patients reported increased energy soon after their first dose with some patients also experiencing Gabapentin’s antidepressant effects.
 
Dr. Teitelbaum uses Gabapentin on some of his patients for sleep enhancement. He groups Gabapentin with Gabitril and Lyrica, stipulating that despite all three drugs being related, one of the three will often be effective and tolerated by the patient even if the other two are not. Dr. Teitelbaum generally starts patients on either Gabapentin or Gabitril and only prescribes them Lyrica if these drugs are not effective. He has found these three treatments to reduce pain levels, improve restless legs syndrome symptoms and improve the patient’s deep sleep. Dr. Teitelbaum warns that the aforementioned three drugs are not addictive but it is imperative that they be weaned off slowly especially if taken for a long period of time. He starts patients on 100-300mg per night of Gabapentin and gradually increments the dosage to 300-900mg three times per day.
 
Dr. Cheney categorises Gabapentin into the class of neuroprotective drugs that may help improve ME patients’ sensitivity to stimulation. He started those with ME on 300mg three times per day. He believes some doctors use doses of Gabapentin that are too high. In a 2009 talk, Dr. Cheney seemed to be less of an advocate of Gabapentin.
 
Dr. Enlander uses Gabapentin on some of this patients. He believes that Gabapentin stops the “abnormal impulses” ME and fibromyalgia patients’ brains experience. As a consequence, the brain’s muscle fibres experience a reduction in fatigue. Dr. Enlander uses doses up to a maximum of 2400mg per day
 
 
Studies

A 2007 study by Arnold et al. was performed on fibromyalgia patients who took Gabapentin at doses between 1200mg and 2400mg for a period of 12 weeks. Patients experienced significantly improved sleep as well as less pain and less fatigue compared to the placebo group. The most frequent side effects noted were sedation and dizziness.
 
A 2010 study by Usui et al. found a strong indicator concerning which fibromyalgia patients were likely to respond to Gabapentin. Those patients unlikely to respond to Gabapentin had hyperperfusion in certain parts of the brain as determined by a SPECT scan. Essentially, increased blood flow in the brain was strongly linked with a poor patient response to Gabapentin.
 
A 2015 study by North et al. examined the effects of an extended release version of Gabapentin on fibromyalgia patients over 15 weeks. Patients noted a reduction in pain, improved quality of life as well as an increase in quality and quantity of sleep. Many improvements were noted after only 4 weeks. Unlike the Arnold et al. study, this study had a smaller sample size and no control group.
 
 
Side Effects
Gabapentin is generally considered to be fairly safe and well tolerated. Despite this, some ME patients have anecdotally experienced side effects. A Cochrane Review by Moore et al. in 2011 based on data from chronic neuropathic pain patients concluded that Gabapentin was mostly tolerable however adverse events were frequent. 12% of patients withdrew from studies due to side effects. The most common being; dizziness, somnolence, peripheral oedema and gait disturbance. The Cochrane Review stipulated that serious adverse events were no more common in the Gabapentin group than the placebo group.
 
It should be emphasized that there is fairly universal agreement that Gabapentin should be started off at a lower dose and gradually increased if tolerated. Also stopping treatment suddenly may be harmful and patients are commonly advised to reduce the dosage slowly. Some doctors recommend Gabapentin only before bedtime with the motive of improving sleep whilst doctors with other objectives recommend that it be taken three times a day.
 
 
My Experience with Gabapentin

I began taking Gabapentin late in 2015, hopeful that I would reap several of its benefits. My poor sleep was the primary reason I chose to take Gabapentin. Related to this, I was interested to see whether my restless legs syndrome symptoms would ease. Gabapentin sometimes reduces patients’ overstimulation although I was slightly dubious as to whether this key symptom of mine would recede. I was also hopeful that I would join the anecdotal reports of ME patients who have gained more energy as a result of taking this drug.
 
I began taking 100mg of Gabapentin before bed and gradually increased this dosage as I failed to notice any side effects. I topped out my dosage at the relatively small maximum of 300mg per night. At this quantity I would sleep fairly deeply throughout the night but wake up still feeling unrefreshed. Curiously, my restless legs syndrome was unaffected by the Gabapentin. I was reluctant to increase the dosage any higher as I felt mildly ‘zonked’ throughout the days. Gabapentin’s effect of knocking me out during the night was a secondary reason to not increase the dosage further.
 
After 300mg per night of Gabapentin for a period of a month, its ability to keep me asleep during the night started to diminish. I then tapered off the drug with relative ease as its only real positive effect of keeping me asleep for most of the night had begun to wane. Several months later, I tried Gabapentin at an identical dosage and had a parallel experience. After one month, its sleep producing effects had diminished.
 
Overall, I didn’t notice any of the more common side effects of Gabapentin and its efficacy towards improving my general ME was negligible. Based on the Usui et al. study mentioned earlier, it was more likely that I would be in the responder group. My SPECT scan showed hypoperfusion (reduced bloodflow) in the brain- the opposite to the fibromyalgia patients who failed to respond to Gabapentin.
 
 
Conclusion

Gabapentin is a fairly common drug in the ME realm, although more regularly prescribed for fibromyalgia. It has the ability to target multiple, seemingly unrelated ME symptoms and thus patients take it for different reasons. My sleep length improved as a consequence of this drug but my sleep quality failed to be enhanced. Ultimately this single positive effect wore off causing me to stop taking the Gabapentin.

 

2016

 

Over the past 12 months, I have tried many treatments that I haven’t written about in previous blog entries. This article will briefly touch on these treatments. Following this, I will detail how my health has played out throughout 2015.

 

2015 was a year that I trialled many ME treatments. These primary treatments were articulated in more detail in blog entries during the year. The following is a list of treatments I trialled at various stages of 2015 that I haven’t written about previously.

 

Astaxanthin

The main motive for me taking astaxanthin was its powerful anti-inflammatory effects. I have been experiencing joint pain during 2015 and I thought of astaxanthin as a safer long-term alternative to NSAIDs. One health questionnaire of 247 sufferers of back pain and rheumatoid arthritis or osteoarthritis found over 80% improving after taking astaxanthin. This supplement also has immunomodulatory effects and many other potential benefits.

 

astaxanthin

 

I started taking 12mg of astaxanthin in November 2015 and plan to reduce the dose to 4mg within the coming weeks. The joint pain in my fingers, wrists and knees has all improved since I started taking the astaxanthin although I’m unsure if this is coincidental or not.

 

Benfotiamine and Allithiamine

During 2013, I took high dose thiamine (vitamin B1) and didn’t notice any effects. I wrote about this treatment in more detail here. In 2015, I trialled allithiamine and benfotiamine which are essentially different versions of thiamine. These two versions of thiamine may be better absorbed by the body than standard thiamine. Anecdotally, some patients have reported one of these versions to benefit them whilst standard high dose thiamine has not. I felt a bit sicker while taking 100mg of Allithiamine in combination with a mutli B supplement and I hence stopped this treatment after several days. I took 500mg of benfotiamine for about a month with no effects noted.

 

Elimination Diet

I have seldom written about diet on my blog for two primary reasons. The first is that food doesn’t seem to affect any of my symptoms. Secondly, I have tried omitting various types of food such as gluten, dairy products etc, at various times throughout my illness but have failed to notice any effects of these food omissions.

 

Fast forward to mid 2015 and I received an email from a fellow Australian ME patient who had similar symptoms to me and benefited remarkably from trying the elimination diet. I am grateful for their thoughts and must thank them for this. The elimination diet that I tried was devised by the Royal Prince Alfred Hospital with the premise of stopping food intolerances. Salicylates, amines, glutamate, gluten and food additives amongst other substances are avoided in the diet. These omissions ultimately don’t leave much to eat and following the strictest version of the diet was challenging to start with before I gradually adapted. I had a night of refreshing sleep while on the diet which is a once every two year rarity for me but other than that, I didn’t notice any other changes. I am planning to try the diet again in mid 2016 for a longer period of time.

 

There are various types of elimination diets and Dr. Cheney has written fondly of an elimination diet. He mentions, “Elimination diets, and improving digestion and gut epithelial function can pay huge dividends in this patient population.” Dr Cheney has found over half of his CFS patients studied to have food sensitivities. He believes an elimination diet is the best way to determine a patient’s food intolerances.

 

IP-6

The primary motive for me taking IP-6 was its ability to increase Natural Killer (NK) cell activity which is often impaired in ME patients. Dr. Edward Conley reports that he has used IP-6 to improve NK cell function in “dozens of cases” of CFIDS.  He elaborates on one case in which NK cell function improved 200% and the patient went from being unable to work to managing a 32-40 hour job.

 

I took IP-6 for a month during 2016 and didn’t notice any effects. The dose I was taking was 3.2 grams twice a day on an empty stomach. I didn’t have the ability to perform a natural killer cell function test to monitor its NK cell effects on me.

 

Naphazoline HCL

Dr Goldstein wrote prolifically about ME/CFS and his treatments always interest me as they seem divergent from many other ME specialists treatments, yet steeped in theoretical/practical evidence. He compiled a list of treatments he trialled often sequentially when a new ME/CFS patient visited him. This list is well worth reading and can be found here. Also listed are his musing on an assortment of other treatments. Naphazoline HCL 0.1% eye drops were the first treatment he tried on patients whom stepped into his office. If the patient benefited from this treatment, they would feel better immediately. Dr. Goldstein theorised that the trigeminal nerve would change the patient’s brain function as a result of these eye drops. It has been claimed that 20% of patients benefited from this treatment and on those patients whom they worked, the drops worked remarkably well.

 

It is imperative that the drops used are 0.1% not 0.01% drops. In some countries, the 0.1% drops are available over the counter. I tried the Naphazoline eye drops on two occasions during 2015 but didn’t notice any effects.

 

Ranitidine

Dr. Goldstein originally tried Ranitidine on infectious mononucleosis patients in the 1980s and due to the success he experienced began using it on ME patients. Ranitidine (Zantac) along with Cimetidine (Tagamet) are H2 receptor antagonists. Dr. Goldstein recommends the dosing structure of 150mg twice a day for one or two days. When patients do respond to one of these H2 receptor antagonists, Dr. Goldstein writes that the recovery is remarkable. He continues on to state that these drugs may cause overstimulation in ME/CFS patients.

 

Ranitidine

 

An anecdotal report of a patient significantly improving after taking Ranitidine can be found here. This patient did however experience severe headaches as a consequence of the treatment which is a possible side effect. Ranitidine is available over the counter in many countries, if not, Cimetidine is normally available over the counter instead. I took 150mg of Ranitidine twice a day for three days but didn’t notice any effects.

 

My Health in 2015

 

Dust Allergy

The major improvement in my health last year was the reduction in nasal mucus discharge or mucus coughed up. This was my first ME symptom to emerge and for many years I was using two boxes of tissues a day. A few years ago, I had an allergy test and was put on dust allergy drops plus the nasal spray Avamys. This improved my tissue usage to around one box a day. In 2015, my sister moved out of the house and I moved into her room with only the bare essentials cluttering the room. This further reduced my dust allergy and I am currently down to using one box of tissues per week- a far cry from the 14 boxes a week I was using for 6 years!

 

Joint Pain

During mid 2015, my big toe joints began to experience pain, make cracking sounds and generally feel uncomfortable. My ankle joints also felt a similar sensation. In October, my finger, wrist, knee and neck joints also became painful. I began taking Astaxanthin, which I wrote about at the top of this blog entry. My newly developed finger, wrist, knee and neck pain improved however my toe and ankle pain persisted. I was referred to a rheumatologist who thought I may have osteoarthritis or rheumatoid arthritis however was unsure. He prescribed me painkillers and thought he would have a more clear idea of what’s going on after my symptoms had more time to progress. I see the rheumatologist again in March. Joint pain is often included on criteria lists for ME/CFS so it may simply be secondary to my illness.

 

joint pain

 

I wrote a blog entry many years ago about the strange, permanent and dark spots that emerged on my joints when my illness initiated. This blog entry, found here, shows photos of the spots on my toes and fingers. I have over the past 12 months noticed a darkening of the big toe spots as well as the development of spots on the joint located at the base of my big toe. I’m unsure if this is related to the joint pain I’ve been experiencing. Also, further spots have appeared on my index and middle finger joints.

 

Sleep

2015 was the year that I struggled with sleep the most. Earlier in my illness, I would sleep right through the night and need an alarm clock to stop me sleeping for extended hours. This situation has inverted over the past handful of years and I now struggle to fall asleep. Also, when I wake during the night I am now often unable to get back to sleep. My Restless Legs Syndrome also prohibits my sleep.

 

Back Pain

The final significant health change that occurred to me in 2015 was my back pain. In late 2014 I suffered a thoracic back sprain by simply standing up from a sitting position. I have since experienced some quite irksome back problems. During 2015, I saw the physio every two weeks for the entirety of the year and took many painkillers for my back. I have been doing some very basic and modified stretches for my back too. I aggravated my back during August, September and October of 2015 by simply standing up from a sitting position and couldn’t really stand or walk properly on each of these occasions for a week. The rheumatologist whom I saw for my joint pain suspects that my back pain is related.

 

Conclusion

Overall, my ME health remained rather static in 2015. The peripheral symptoms I have written about above were nothing more than a blip on the radar when compared to how the crux of the ME has affected me. I am thankful that the mucus production symptom is being thwarted and I hope this continues into 2016. At present, the joint pain isn’t significant and I plan on continuing the Astaxanthin which may be easing it. My sleep and sleep treatments are something that I wrote about more extensively in my last blog entry and I have a sense of optimism that 2015 was an outlier as far as my insomnia was concerned. Regarding my back pain, I have found through trial and error that sleeping on the right type of mattress significantly improves this symptom. By finding the optimal mattress in 2016, this may not only ease the back pain but perhaps improve my sleep too. Improving my ME is a more difficult matter, although I have some more ideas up my sleeve for 2016!

sleep
 
“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 tablets
 
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.
 
valerian tablets
 
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’ cocktailTTA 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.
 
nystatin
 
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.
 
nebuliser
 
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

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

Sulforaphane may benefit ME patients due to: broccoli sprouts

  • 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 7th 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.”

nicotine gum
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 30th 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:curcumin

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 13th 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.”

TENS machine


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.

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 30th 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.

slipped disc


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 elderberry
  • 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.

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