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Archive for the ‘My personal CFS story’ Category

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.

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Nimodipine

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

 

Dosing structure

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

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

 

Mysterious Cause

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

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

 

Side Effects

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

 

Conclusion

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

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 Clonazepam

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

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

                                                                                                                                                                                                                                         Imunovir

Inosine

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

 

Mechanism of Action

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

Antiviral

  • It may treat active herpesvirus infections.

                                                                                                                                                                                                                                      Immunomodulator

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

 

Study

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

                                                                                                                                                                                                                                                                   My experience with Imunovir

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

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

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Clonazepam

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

                                                                                                                                                                                                                                                   Mechanism of Action

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

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

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

 

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

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

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

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

 

My Experience

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

 

When my Heart Skipped a Beat

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

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

                                                                                                                                                                                                                                                 Diary

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

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I must preface this blog entry with another apology for my lack of writings in recent months. The fact of the matter is that using the computer causes me cognitive impairment, headaches and a next-day migraine. If the frequency of my blog entries was graphed against the state of my ME, a direct correlation would be found- That is, if I blog often, I am feeling slightly healthier than if I don’t blog for a period.

                                                                                                                                                                                                                                        Dexedrine

An Olson et al. study (found here http://www.ncbi.nlm.nih.gov/pubmed/12515836) resulted in dexamphetamine improving the fatigue severity scale scores in 9 out of 10 CFS patients while only 4 out of 10 patients in the placebo group experienced improved fatigue severity scores. Dexedrine may improve; cognitive problems, decrease fatigue and increase energy. It may also increase certain neurotransmitters that may be low in some ME patients. Dr. Teitelbaum is an advocate of Dexedrine believing it may increase energy and blood pressure. Dr. Goldstein believes that one third of CFS patients will benefit by taking stimulants (he recommends amphetamine salts.)

                                                                                                                                                                                                                                                               There are risks associated with taking Dexedrine such as the risk of addiction if used for extended periods of time. Some of the potential side effects listed are also off-putting. Dr. Goldstein warns that if certain neurotransmitters are too low in patients, stimulants may increase CFS symptoms.

                                                                                                                                                                                                                                                                   My experience in taking Dexedrine was quite short lived. After a night of interrupted sleep, I took ¼ of a 5mg tablet (in the morning.) My cognitive abilities were noticeably improved throughout the day and I was more alert than normal- After an interrupted sleep, I am typically very sleepy during the day however the Dexedrine remedied this problem. Every day I meditate for 1 hour and on the day I took the Dexedrine, my meditation was far more focused, easier and effective than normal. The downside of the Dexedrine hit me at approximately 5pm when I experienced a crash. I speculated that the Dexedrine was wearing off when I crashed as it has a very short half-life. I have not taken Dexedrine since due to the potential crash it may cause.

                                                                                                                                                                                                                                  Azithromycin

Azithromycin is an antibiotic with immunomodulatory and antiviral properties. The macrolide antibiotic family (of which Azithromycin belongs) is effective against a broad range of bacteria-many of which have been linked to ME. Azithromycin is able to cross the blood brain barrier with some ease and it hence has the potential to fight CNS infections. It also has anti-inflammatory properties. Dr. De Meirleir and Dr. Nicholson are both advocates of Azithromycin, using it quite frequently with some success. A Vermeulen et al. study (found here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/) discerned that 58 out of the 99 CFS patients studied had a decrease of symptoms while taking Azithromycin. The antibiotic was most effective in patients with low levels of Acetylcarnitine. It should be noted that none of the patients in the study reached remission status as a result of this treatment. Azithromycin may exacerbate liver function impairment and can be fairly expensive.

                                                                                                                                                                                                                                                                   My experience with Azithromycin is ongoing as I have been taking it for the past 3 weeks and will continue to take it for the next 3 weeks. To date, I haven’t noticed any effects.

                                                                                                                                                                                                                                   Testosterone

I will attempt to keep this Testosterone summary short. As a male, with borderline low testosterone, I applied testosterone cream daily for approximately 1 month and had HCG injections weekly for 4 weeks. Over this period, I experienced frequent crashes and an exacerbation of many symptoms. It was arguably the worst month of my ME. I also lost my appetite (probably due to the HCG injections.) The blood test showed that after 1 month of testosterone treatments, my testosterone was moderately lower than when I began the testosterone treatments. My doctor speculated that my body had ceased to create endogenous testosterone due to the exogenous testosterone applied to it. I’m not feeling well enough at present to detail the potential positives and negatives of testosterone (it can replicate viruses including XMRV-whatever that is) however I have ceased the treatment and am now back to baseline (how I was feeling before trialling the testosterone.)

                                                                                                                                                                                                                                      Conclusion

Ideally, I would like to write in detail regarding each treatment however due to my current health status, this is not possible. I have a handful of other treatments that I will commence over the coming months and I will blog about any effect these treatments have on my ME.

 

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The Beach

I have just returned home from a month staying at the beach. The idea of going to the beach for my ME originated several years ago when my former ME specialist recommended that I stay with a “distant relative” for a few weeks to observe whether this caused an improvement in my health. The specialist theorized that some environmental aspect of my home life may have been contributing to my illness. I made a booking for a beach cabin several months ago for the period between mid December 2011 and mid January 2012.

                                                                                                                                                                                                                                                                   The main problematic aspect of this trip that I envisaged was the transportation of myself from my home to the beach (a 20km distance.) Due to my severe ME, I am housebound and often bedbound and a car ride of 5minutes is normally sufficient to cause post-exertional neuro-immune exhaustion (a crash- and not of the car variety!) I took all the precautions humanly possible prior to departing for the journey, including my Mum departing before me so she could check in and upon my arrival I could promptly lie down. My Dad drove me down to the cabin and upon arrival I experienced a not unexpected case of post-exertional neuro-immune exhaustion.

                                                                                                                                                                                                                                                                  Some of my personal health related happening while residing at the beach involved after 24 hours the following symptoms: nausea, lack or appetite, an upset stomach and ultimately me not eating anything for 3 days. This coincided with my post-nasal drip not being as severe as normal. After several days I drew a link between these events and deduced that I was perhaps subconsciously swallowing my post-nasal drip as opposed to spitting it out (the process that I do at home.) I then began spitting out the remnants of my post-nasal drip and the new symptoms that blossomed upon arriving at the beach disappeared. I should stipulate that my appetite did not return fully and for the remainder of my stay, my appetite was approximately half of what it is at home. Upon returning home, my appetite returned to its normal level. I suspect that subconsciously, at the beach, I was still swallowing some small volume of post-nasal drip as opposed to spitting it out, perhaps due to my mind conforming to some non-home environment spitting etiquettes.

                                                                                                                                                                                                                                                     Unfortunately, my occupation of the cabin at the beach didn’t cause a shift of any of my ME symptoms. I did however enjoy a change of atmosphere, idyllic scenery and the natural salty-water combine gusts skimming across the ocean and then meandering up my nostrils.

                                                                                                                                                                                                                                                                        I normally experience back pain (although this is completely dwarfed by my ME symptoms) however while at the beach my back aches were barely noticeable. I attribute this to the mattress and chair within the cabin being very soft. This contrasts my mattress at home and chair next to my bed being relatively more rigid. Upon returning home, I purchased a softer chair and I plan to also buy a softer mattress at some point in the near future.

                                                                                                                                                                                                                                                 Lyme Disease Test

Three months ago, I sent my blood to IgeneX in California for Lyme disease testing (the basic lyme panel.) The logistical intricacies involved with getting my blood drawn and sending it from Australia to California in the narrowest of periods was problematic however ultimately my blood arrived safe and on time. The Lyme Disease Association of Australia has compiled a step-by-step document detailing how to send blood to Igenex from Australia and this can be found here: https://docs.google.com/a/lymedisease.org.au/viewer?a=v&pid=explorer&chrome=true&srcid=0B0eTEq5NElNcNjJlZTY3YzYtM2IwMy00MDUzLWE3NzItODhlYzliOTc4NTMw&hl=en_US

                                                                                                                                                                                                                                                           Further information pertaining to Lyme disease in Australia can be found here: http://lymedisease.org.au/for-doctors/doctors-information-kit-about-lyme-disease-in-australia/ The presence of Lyme disease in Australia is controversial and I won’t delve into the debate.

                                                                                                                                                                                                                                                                   My results:

IgG Western Blot: 31kDa was indeterminate, 41kDA was positive, 58kDa was positive. Overall five bands are required to be positive for a positive test however only two of my bands were positive.

IgM Western Blot: 39kDa was indeterminate, 41kDa was positive. Overall 2 bands out of 23-25, 39, 41kDA are required to be positive for a positive test however only one my bands were positive and one was indeterminate.

IFA B Burgdorferi: My titer levels were less than 40 which constitutes a negative nest.

In total, I reaped three negative tests however my IgM test was not technically definitive.

                                                                                                                                                                                                                                     Conclusion

Overall, my ME symptoms have remained quite static during the past several months. I have trialled a handful of new treatments of late and I will document the rationale behind these treatments and if they had any effect on me in a subsequent blog entry.

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This is a summary of the treatments that I began trialling during August and September 2011.

                                                                                                                                                                                                                                 Pentoxifylline
Pentoxifylline has many potential mechanism of action for improving ME symptoms including anti-inflammatory effects achieved through down regulating IL-2, NF Kappa B and TNF-alpha. It also possesses a degree of anti-viral and immunomodulatory activity. I wrote a blog entry last month expanding upon this rationale of using Pentoxifylline for ME:(https://livingwithchronicfatiguesyndrome.wordpress.com/2011/09/05/pentoxifylline-for-me/)

                                                                                                                                                                                                                                                        My Experience
After in excess of a month taking 400mg of Pentoxifylline three times a day, I have noticed no positive effects. Conversely I have also not experienced any side effects.

                                                                                                                                                                                                                                            NeuroProtek
NeuroProtek contains the flavonoids; luteolin, quercetin and rutin in tandem with the antioxidant, olive kernel oil. It is a mast cell blocker that has proven useful to a number of children with autism. There exists a number of anecdotal reports online of ME patients experiencing an improvement in cognitive impairment as a result of taking NeuroProtek however many of these patients report their cognitive impairment returning following discontinuation of NeuroProtek. It is a fairly expensive treatment if one follows the recommended dosage guidelines. More information regarding Neuroprotek and the theory of using this treatment for ME can be found here: http://www.mecfsforums.com/index.php/topic,6751.0.html

                                                                                                                                                                                                                                                       My Experience
I have taken 8 Neuroprotek capsules a day for the past 3 weeks and I am yet to notice any positive or negative effects. I have purchased enough NeuroProtek to continue this treatment for approximately another 3 weeks.

                                                                                                                                                                                                                                      Germanium
The inorganic form of Germanium has been implicated in causing toxic effects in some of its users. The form of Germanium that I took is the Organic, beta-carboxyethylgermanium sesquioxide form. This form has not demonstrated the same toxic effects that inorganic Germanium has caused. Some sources state that clinicians report that 20%-50% of CFS patients taking Germanium experience “significant symptom relief” however I am unable to find the etiology or primary source of these reports hence I would classify them as potentially dubious. Germanium has the following possible mechanisms of action in ME- improving the body’s oxygen supply, stimulating interferon production and providing some symptomatic relief through its antioxidant properties.

                                                                                                                                                                                                                                                       My Experience
I have taken organic Germanium-132 at a dosage of 100mg daily for the past 6 weeks. I am yet to experience any positive or negative effects as a result of the Germanium treatment.

                                                                                                                                                                                                                                                      TTA (tetradecylthioacetic acid)
TTA is a fatty acid supplement that is an active ingredient in many weight loss products. It is also used by some bodybuilders who want to achieve rapid weight loss and muscle gain. TTA stops the breakdown of free fatty acids and enhances beta oxidation. It also may enhance the user’s blood flow and may have antioxidant effects. A Pubmed search yields many possible mechanisms of action of TTA on ME (http://www.ncbi.nlm.nih.gov/pubmed?term=tetradecylthioacetic%20acid)

TTA may be detrimental to ME patients due to a study suggesting that it causes a “marked reduction in cardiac efficacy” in healthy controls. This study http://journals.lww.com/cardiovascularpharm/Fulltext/2008/04000/Pharmacology_and_Safety_of_Tetradecylthioacetic.10.aspx trialled TTA on healthy controls for 7 days and found it “safe and well tolerated.” TTA’s longer term use, use at higher dosages and effect on ME patients are all unstudied and hence potential areas of concern. I must emphasise that TTA is highly experimental and I have not found any anecdotal reports online of ME/CFS patients taking it. Many healthy users of TTA experience cramping while taking this treatment. The form I used contained electrolytes. I must state that I don’t recommend that ME patients take TTA due to the aforementioned reasons.

                                                                                                                                                                                                                                                       My Experience
I took a daily dose of TTA of 500mg for the first week and 1 gram for the second week. I did not plan on trialling this treatment long term due to the unstudied long term effects of it. After my second dose of TTA, I woke up feeling more refreshed than normal and this continued for the next several days. Conversely, I also experienced several crashes while taking TTA and I suspect that the TTA unfortunately reduced my crashing threshold. Overall, I stopped taking the TTA after 2 weeks.

                                                                                                                                                                                                                                                 Propax with NT Factor
Propax contains a long list of ingredients (more information about it including full ingredient listing can be found here: http://www.mecfsforums.com/index.php?topic=8280.0) It essentially contains a broad multi-vitamin, combined with lipid replacements and a range of other ingredients not normally found in multi-vitamins. One study found that those suffering from the symptom of fatigue (not ME or CFS) experienced a reduction in fatigue by on average 36.8% after a week of taking Propax. Another study found that those suffering from “severe fatigue” but not ME experienced a reduction in fatigue by on average 40.5% after taking Propax for 8 weeks. It should be noted that both of these studies were run by those who sell the product.

                                                                                                                                                                                                                                                       My Experience
I took 3 packets of Propax a day for the period of 2 months. I didn’t experience any positive or negative effects as a result of this treatment.

                                                                                                                                                                                                                                         Melatonin
In this past blog entry (https://livingwithchronicfatiguesyndrome.wordpress.com/2011/03/09/my-2011-treatments-a-progress-report/) I briefly discussed my consumption of melatonin tablets.

                                                                                                                                                                                                                                                         My Experience
I starting taking melatonin during February this year and it enabled me to sleep deeply throughout the night. This caused me to gain more quality sleep and sleep for a longer period of time. These improved sleep-based symptoms didn’t result in other improved symptoms. Since earlier this year I have also been experiencing a new type of headache that occurs bilaterally on the lower part of my temples. Its onset is generally within 30 minutes of waking and the headache remains for the entire day. No pharmaceutical intervention has managed to ease the headaches. These headaches have becoming more frequent since the start of this year and during August they had a frequency of every second day.

I visited a GP who did not know what was causing the headaches and I therefore decided to research them myself. I found that waking headaches are often caused by an imbalance of neurotransmitters. I speculated that the melatonin was causing me to sleep in a deeper state for a longer period which was subsequently causing my neurotransmitters to most likely raise beyond normal levels. After ceasing the melatonin (which can also cause headaches) my new headaches also similarly reduced. I now notice that when I sleep beyond 10 hours, I again experience the waking headache however I am immune from them if I sleep for less than 9 ½ hours. I won’t bore readers by relaying the details of my headache situation however I am pleased to mainly have my normal headaches prevalent again as opposed to my normal headaches in tandem with the sleep induced headaches.

                                                                                                                                                                                                                                       Conclusion
These are the main treatments that I have trialled over the past 2 months. I have also continued to take a core group of drugs/supplements that I have perpetually taken for years. One supplement that I started taking in August that I failed to mention in the above article was L-Carnosine (not to be confused with L-Carnitine) however I failed to notice any benefits. Every 3 months I trial a prescription drug that I consider to be a reasonably safe drug with a reasonable chance of efficacy against my ME symptoms (this season it was Pentoxifylline.) I also take a plethora of secondary supplements/treatments that I have not taken before. I have many treatments left up my sleeve and I will update readers on my progress with them in a subsequent blog entry.

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Firstly, I must apologise for my blog entry drought of late. This is directly attributable to my ME/CFS prohibiting me (since January) from using a computer for any meaningful period of time. I have been experiencing a mild ‘virus?’ for the past several days which paradoxically has enabled me to write this blog entry. It is somewhat a shaded irony that my cognitive impairment inevitably (yet temporarily and mildly) improves when I experience viruses.

                                                                                                                                                                                                                                                Nexavir: The Results
I wrote a blog entry last year (https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/) documenting the use of Nexavir as a treatment for ME/CFS. Approximately 1 month ago I ceased the daily Nexavir injections after trialling this treatment for a period of 7 months. The first 4 months of treatment involved a 2ml injection of Nexavir daily while the final 3 months of treatment encompassed a pulsing dose structure of 1ml, 3ml, 1ml, 3ml etc. I did not experience any distinctive positive or adverse affects as a consequence of the Nexavir treatment. My lack of responsiveness to Nexavir may partially be attributable to my negative (or low titre) test results to; HHV6 early antigen, HHV6 IgG, HHV6 IgM, EBV early antigen and EBV VCA ELISA. Studies have indicated that Nexavir has the greatest efficacy in patients with high EBV-EA IgG titer levels and in vitro evidence also suggests that high HHV-6 titer levels may be reduced by Nexavir.

                                                                                                                                                                                                                                                            L-Serine
L-Serine is an amino acid which former Adelaide CFS specialist, Dr. Buttfield, believes should help 60% of CFS patients significantly. In the past I have consumed a daily dose of L-Serine amounting to 500mg for the period of 3 months (as part of Energy Revitalization System powder.) This did not produce any noticeable effects. Dr. Buttfield recommends that patients begin taking L-Serine at a 500mg dose and titrate this dosage upwards towards a maximum daily dose of 2g. I have been taking a pure L-Serine powder for the past 2 weeks and I’m still in the process of increasing the daily dosage. I will write a subsequent blog entry detailing whether L-Serine had a beneficial effect on my ME/CFS.

                                                                                                                                                                                                                                         Guaifenesin
During March I began taking the expectorant ‘Guaifenesin’ for the period of a month. Guaifenesin is most widely known in the Fibromyalgia and ME/CFS domain as part of Dr. Paul St. Amand’s controversial protocol encompassing salicylate avoidance. For the record, I am vehemently opposed to Dr. St. Amand’s protocol. My motives for trialing Guaifenesin stemmed from its expectorant effects and potential mechanism of action in inhibiting chronic sinusitis. My secondary motives for attempting this treatment involved its potential to inhibit platelet aggregation. Guaifenesin lowers uric acid levels which are already subpar in many ME/CFS patients hence I took Guaifenesin in tandem with brewer’s yeast (which raises uric acid levels.) I began taking 200mg of Guaifenesin and increased this dose to 600mg. After no effect on my high volume of mucus discharge or sinus related symptoms, I ceased taking Guaifenesin after one month. High doses of Guaifenesin may cause kidney stones and anecdotal reports indicate that many Fibromyalgia and ME/CFS patients experience a worsening of symptoms while taking Guaifenesin. I did not notice any positive or adverse effects as a consequence of taking Guaifenesin.

                                                                                                                                                                                                                                              Piracetam and Choline Citrate
I wrote a past blog entry documenting the potential usefulness of Piracetam as a treatment for ME/CFS (https://livingwithchronicfatiguesyndrome.wordpress.com/2011/04/04/piracetam-for-mecfs/) For the past month, I have taken 4.8g of Piracetam daily in three smaller doses of 1.6g consumed at eight hour intervals. I have also taken choline citrate (500mg a day, taken in a single dose) in tandem with the Piracetam. The reasoning behind combining these treatments involves the synergistic effects that Piracetam has when consumed concurrently with choline citrate (regarding mechanism of action as a nootropic.) After one month of these treatments I am yet to notice any positive or adverse effects. I plan to continue these synergistic treatments for the total period of 3 months.

                                                                                                                                                                                                                                          Conclusion
I have a plethora of future treatments lined up to trial including drugs that are supposedly effective against Raynaud’s phenomenon and improving cerebral circulation levels. I will hopefully write more about these and other treatments when I obtain them.

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Introduction

I must preface this blog entry with an apology for my lack of blog posts of late. This is attributable to my ME/CFS prohibiting me from using the computer for any meaningful length of time. I am unsure whether this is the result of natural ME/CFS progression, a consequence of one the treatments I am trialling or some combination of the two. Not being able to use the computer for more than several minutes at a time has meant that I have been unable to criticise the recently published PACE trial or follow ME/CFS or XMRV related happenings in any detail.

                                                                                                                                                                                                                                                                              I will attempt to document the ME/CFS treatments I have been taking during 2011 and include a status report pertaining to their effectiveness/side effects on me. Under normal circumstances I would like to write an examination of each treatment individually including studies, mechanisms of action, dose etc however I plan to keep this blog entry brief and I will instead provide links to exterior sources containing more plentiful information about each treatment.

                                                                                                                                                                                                                                                                          The Treatments

Cordyceps Sinensis: Cordyceps Sinensis are a hybrid caterpillar fungus that are often utilised in Chinese medicine. I became aware of this treatment as the result of viewing a documentary titled ‘Tibetan El Dorado.’

Information about Cordyceps Sinensis in general can be found here:

http://en.wikipedia.org/wiki/Cordyceps

Cordyceps Sinenis possible usefulness and mechanisms as a treatment for ME/CFS can be found here: http://www.cfs-healing.info/database.htm (scroll down to ‘Cordyceps’)

                                                                                                                                                                                                                                                                        My Experience: I took Cordyceps Sinensis for several months and didn’t notice any beneficial effects or significant side effects. On two separate occasions I attempted to increase my consumption dose from 1 tablet (525mgs) to 2 or 3 tablets. I experienced an exacerbation of my ME/CFS symptoms during these attempted dose increases however I believed this to be a spurious similarity (it also didn’t resemble a Herxheimer reaction.) Side effects are apparently rare as a direct consequence of Cordyceps Sinensis consumption. I have now stopped taking this treatment.

                                                                                                                                                                                                                                                            Obtaining genuine Cordyceps Sinensis in western countries can be problematic however I eventually managed to find a large American company that cultivates Cordyceps Sinensis indoors. I don’t like to advertise companies or specific brands so if anyone wants to try this treatment and cannot find an appropriate supplier of Cordyceps, please leave a comment and I will email you a link to the homepage of the company I used.

                                                                                                                                                                                                                                                                       Kefir: Kefir is a fermented milk drink that some ME/CFS patients use for impaired gastrointestinal or immune systems and/or nasal symptoms.

Some information about Kefir and its relation to ME/CFS can be found here: http://forums.phoenix-cfs.org/showthread.php?1137-Kefir-KCLM-Research-Interview

                                                                                                                                                                                                                                                                           My Experience: I consumed both goats milk and water based Kefir products several times a day for approximately 5 weeks. My Mum obtained the Kefir from a fellow ME/CFS patient and she also grew the substances.  I didn’t notice any positive or negative effects while taking the Kefir.

                                                                                                                                                                                                                                                         Hawthorn: Hawthorns are a group of shrubs and trees that belong to the rose family. Hawthorn supplements have many potential effects on ME/CFS patients that centre on enhancing the heart’s abilities.

An excellent post describing Hawthorn and its relation to ME/CFS can be found here:  http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1013873 (the second post down- by Forebearance.)

                                                                                                                                                                                                                                                                        My Experience: I have been taking Hawthorn leaves and flower extract in capsule form for over 2 months now. The reasoning behind me trialling this treatment arose after reading that Dr. Cheney often recommends Hawthorn as an adjunctive treatment to Nexavir (which I am also taking.) Prior to starting Hawthorn, my resting pulse rate was between 76-80 beats per minute. My resting pulse rate is now 60 beats per minute (most likely as a direct result of the Hawthorn.) Prior to becoming ill, in my athletics days, my resting pulse was in the fourties. I am very pleased with my new, lower heart rate, especially considering that I am virtually bedbound. I haven’t noticed any other effects from taking the Hawthorn- no other positive effects, no side effects and no secondary positive effects from having a lower resting pulse rate (i.e. not noticeably improved peripheral circulation.) I am continuing to take Hawthorn at a dose of 500mg twice a day. 

                                                                                                                                                                                                                                                            Nexavir:  Over four months ago I wrote a blog entry about Nexavir that can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/ Nexavir is an injectable porcine liver extract that has had promising results in CFS studies.

                                                                                                                                                                                                                                                                        My Experience:  After four months of daily Nexavir injections, I am still yet to notice any vivid positive effects. Conversely I have also not experienced any negative effects. I plan to continue the Nexavir injections until I complete the 6 month course. Yesterday I began to pulse the Nexavir dose.

                                                                                                                                                                                                                                                        Melatonin: Melatonin is a naturally occurring hormone compound that has many possible mechanisms of action against ME/CFS. It is most widely used in ME/CFS patients to aid in the obtainment of quality sleep.

More information about Melatonin and its relation to ME/CFS can be found here: http://aboutmecfs.org/Trt/TrtMelatonin.aspx

                                                                                                                                                                                                                                                                         My Experience: I have found that my optimum dose of Melatonin is 0.6mgs (this dosage number varies among patients and is generally determined through the process of trial and error.) I find this dose doesn’t keep me drowsy throughout the day however slightly aids the deepness in which I sleep. I have taking Melatonin for approximately 4 weeks and plan to continue with this treatment.

                                                                                                                                                                                                                                                                  Immunoprop, Catapult and Immunoplus: Dr. Enlander uses these treatments as synergistic treatments to Hepapressin injections.

                                                                                                                                                                                                                                                                        My Experience: I took each of these treatments simultaneously for 3 months and did not notice any positive or negative effects.

                                                                                                                                                                                                                                                    Magnesium injections

A study found here: http://www.ncbi.nlm.nih.gov/pubmed/1672392 and titled ‘Red blood cell magnesium and chronic fatigue syndrome’ found low red blood cell magnesium levels in CFS patients. After intramuscular magnesium sulphate injections weekly for 6 weeks, 12 of the 15 CFS patients given magnesium benefited from the treatment. This contrasted 3 out of the 17 CFS patients given a placebo noting a symptomatic improvement.

                                                                                                                                                                                                                                                                 Despite this second study: http://www.ncbi.nlm.nih.gov/pubmed/11155461 being performed on Fibromyalgia patients, it demonstrates that plasma levels of magnesium are normal in such patients however their intracellular magnesium levels were low and potentially to blame for their muscular hypertonus.

                                                                                                                                                                                                                                                                         The purpose of using intramuscular injections of magnesium sulphate is that a large portion of CFS patients cannot intracellularly absorb magnesium when taken orally. IM magnesium shouldn’t be prescribed to patients with kidney problems. This website emphasizes that IM magnesium side effects are unlikely: http://www.medicinenet.com/magnesium_sulfate-injection/article.htm

                                                                                                                                                                                                                                                                         My Experience: I had 2.47g per 5ml of magnesium, injected intramuscularly, weekly for 4 weeks. The actual injections can be quite painful however the pain can be reduced by warming the magnesium sulphate to room temperature, adding B12 and/or using lidocaine. The magnesium injection does sting at the delivery site however I found that each magnesium injection was less painful that the last. I also took calcium (to avoid a mineral imbalance), B1 as recommended by Dr. Myhill (for its synergistic effects) and continued with oral magnesium. I didn’t notice any negative or positive effects as a result of the magnesium injections. 

                                                                                                                                                                                                                                                                Myers’ cocktails: Myers’ cocktails are an intravenously delivered nutrient therapy that contain a range of vitamins and minerals.

An 18 page document describing everything there is to know about Myers’ Cocktails can be found here 

                                                                                                                                                                                                                                                                        My Experience: I had weekly Myers’ cocktails for 3 weeks. During the infusions, I experienced a flushed face and felt relaxed. Following the infusion I felt sleepy. These are all standard symptoms as a result of Myers’ cocktails. Each morning after the Myers’ cocktail I felt slightly refreshed however this feeling was transient.  My Myers’ cocktails contained the standard ingredients including 15grams of vitamin C as well as zinc. Dr. Majid Ali has found that 15grams of vitamin C delivered intravenously can mend the abnormal shapes of ME/CFS patient’s red blood cells and hence improve blood flow. I didn’t notice any side effects or positive effects from the Myers’ cocktails.

                                                                                                                                                                                                                                                     Conclusion

Despite some of these treatments having excellent efficacy in CFS studies and when prescribed by ME/CFS specialists, I didn’t experience any beneficial effects despite a reduced resting heart rate as a consequence of taking Hawthorn. I have many further treatments planned and I will again update readers of this blog with the future effects of these therapies.

 

 

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This blog entry will be an aberration from my other entries. I normally avoid covering the emotional toil that plagues chronic illnesses however this entry is devoted to such specifics. These are some of my most common musings- from a mind ravaged by ME/CFS

                                                                                                                                                                                                                                                                              I often ponder the questions in the existential domain of ‘why here and now?’ Why did I end up with ME/CFS and why did it flourish at this stage in my life? Rather than this question being a catalyst for depressing and macabre answers and rather than this being a rhetorical jibe, I instead hypothesise that ME/CFS may have been my saving grace. If I was not inflicted with this debilitating disease, I may have died in some unfortunate incident such as a real crash (not the ME/CFS type!) By having this illness, I may have averted what could have perhaps been an even grimmer situation.

                                                                                                                                                                                                                                                                        The unique timeframe that I and other ME/CFS sufferers contracted this disease is particularly quizzical. Out of the eons of human civilisation, to bequeath a disease that can be sufficiently diagnosed however not have any opaque etiology or necessarily effective treatments is statistically freakish. Only a small window within the expanse of time involves human’s being able to diagnose however not treat or fundamentally understand an illness.

                                                                                                                                                                                                                                                                              I often use a purposeful fallacy to avoid staring enviously at others. This dubious argument I created states that ‘One only experiences the act of craving something when a comparison is made to “the other” who has entity x.’ For instance if everyone in the world could fly besides me then I would envy such flying prowess that is otherwise ubiquitous worldwide. It becomes evident that such envy stems from what everyone else has as opposed to what I have and it is therefore only imposed by the manner in which I view the world. I therefore can pretend that beneath the thin veneer of the population’s healthy exterior lies much permanent pain and anguish. I am therefore not envious of health because it does not exist (although in the real world, I would still dearly love my health back!)

                                                                                                                                                                                                                                                                           My illness began when I was 17 years old and I am writing this article at the age of 23. I am in the unique situation of not knowing what I am like as a person. The developments that occur between 17 and 23 can be dramatic and living such a restricted life has caused me to be unsure of my real personality (when I am void of illness), my interests and who I fundamentally am as a human being. I don’t consider myself to be aged 23 but rather I tell myself that I am still 17 and my life has merely been placed on pause. When one doesn’t experience exterior trials, thrills, tribulations and ageing peers- does one really metaphorically grow older?

                                                                                                                                                                                                                                                                        The twisted irony of this illness involves the very instrument needed to research this disease being affected- the brain. This circular quandary is one of the most frustrating elements of this disease and leaves one often feeling helpless. One could cope with a predominantly physically crippling disease or even a solely neurological disease. One could rely on the unaffected bodily function- i.e. mind or body. ME/CFS patients are not so lucky. I would love to passionately pursue some athletic or intellectual endeavour however the nature of this illness prohibits precisely both of these avenues.

                                                                                                                                                                                                                                                                         The demeaning illness name that literally applies to 7 billion people worldwide in ‘fatigue’ is perhaps the most malicious misnomer in the English language. Such a large portion of the trivialisation of this illness (and perhaps lack of medical inroads into this illness) is a consequence of the literally interpreted nomenclature: ‘chronic fatigue syndrome.’ The condescending and antiquated jibes stemming from the psych lobby are another gloomy face of this illness. Much like the ‘God of the gaps’ theory, I call the psych lobby’s assertions ‘the gaps of the illnesses.’ When one ‘psychosomatic’ illness is proven beyond doubt to be purely biological- there domain narrows… I wait for the day that ME/CFS is removed from their realm.

                                                                                                                                                                                                                                                                        The politics that is compulsively intermingled with this illness has forced every patient into the advocacy minefield. We must burn both ends of the candle- treatment research and political advocacy to stumble across a solution in the form of a cure. Which end of the candle will vanquish first remains the pertinent question.

                                                                                                                                                                                                                                                                 Having nebulously defined limits which if one misestimates or fails to preconceive of results in the wicked cruelty of suffering.  The punishment in crashing does not fit the crime of misestimating a variable. This process is almost poetically symbolic yet devilishly evil. It is as if ME/CFS patients are being tempted onto an ice arena yet it takes one false step and beneath the mysterious surface, lurking in some unknown plain, the cracks instantaneously emerge and one is devoured by the world.

                                                                                                                                                                                                                                                                   Although it can be interpreted as a sadistic tendency, I cherish watching gruelling sporting events such as Le Tour De France. Such vision portrays fellow mortals suffering while scouring mountains that reach into the heavens. Pain is painted on their face and is a timely reminder for me that in the real world, that I am not a part of, suffering is abundant. Having the knowledge that I am not the only individual on this earth to experience constant physiological pain is refreshing. If others can tolerate it- I can too. This aforementioned sporting event is merely a manifestation of self-inflicted pain yet I am reminded that some chronically ill people out there are worse-off than me. I am lucky compared to these sufferers.

                                                                                                                                                                                                                                                                              I always considered the moral theory of utilitarianism to define happiness (or pleasure) and pain as antonyms. I am now a contradiction of these former thoughts of mine. I am an extremely happy person every hour of the day yet conversely I am also in pain 24/7. ME/CFS has forced me to reconsider a plethora of my former thoughts and it has changed me in more manners than I considered possible.

                                                                                                                                                                                                                                                                    There is very little for me to occupy my time with however curiously I never fall down the abyss of boredom. Jean-Paul Sartre once said “If you are lonely when you’re alone, you are in bad company.” I am quite fond of my own company and have always been a relatively solemn person. I tend to break each day into segments rather than tackling the day as a holistic entity. This technique has contributed to my days passing swiftly.

                                                                                                                                                                                                                                                                        Most painters live to paint however I paint to live. When I am not well enough to partake in the few activities that I am restricted to (e.g. TV) I can paint. This is not something that I particularly enjoy yet this is thrust onto me. I paint for the process not the end product. I find the repetitive brush strokes onto canvass soothing. Painting is essentially a management strategy intertwined within this illness for me.

                                                                                                                                                                                                                                                                         Like every ME/CFS patient, I have been on the receiving end of pejorative comments from family, friends and doctors pertaining to my illness. To avoid negatively dwelling upon such comments for my own sake, I employ ‘Hanlon’s Razor’ to such remarks. This concept is defined as: “Never attribute to malice that which is adequately explained by stupidity.” I paraphrase this statement to read “Never attribute to malice that which is adequately explained by ignorance.” When a prejudice comment is made to me relating to my illness, I mentally explain the antagonist’s behaviour through their ignorance of ME/CFS as opposed to them being malicious.

                                                                                                                                                                                                                                                         Accompanying any chronic illness are the inevitable gloomy thoughts that pepper the mind like Maradona homing in on goal. I deflect such thoughts by firstly identifying them as pragmatically useless entities as early as possible. I then change my thought process to focus on an ulterior topic. This process has conditioned my mind, as if it were one of Pavlov’s dogs as I now seldom let negative thoughts infect my soul.

                                                                                                                                                                                                                                                                            It is not a matter of will I get better from this illness, I only consider the question of ‘when will I reach remission?’

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