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Archive for the ‘CFS treatments’ 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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Nimodipine for ME

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

 

Nimodipine’s possible symptom effects on ME patients

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

                                                                                                                                                                                                                                                      Nimodipine may secondarily:

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

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

 

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

 

 ME/CFS Specialists’ opinions on Nimodipine

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

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

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

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

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

 

Side Effects

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

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

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

 

 

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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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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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Pentoxifylline for ME

Pentoxifylline (known in Australia as Oxpentifylline) has the most common brand name, Trental. It is a prescription drug that belongs to the class of drugs called xanthine derivatives. Pentoxifylline’s most common use is to enhance peripheral and cerebral blood circulation.

                                                                                                                                                                                                                                      Mechanisms of Action in ME
Many studies attest to Pentoxifylline’s ability to treat Raynaud’s phenomenon. It achieves improved circulation in vivo through several mechanisms including by improving the flexibility of red blood cells which in turn allows the red blood cells to navigate with greater ease through the capillaries. Pentoxifylline also improves platelet deaggregation which subsequently aids circulation through blood vessels. In addition it reduces the viscosity of blood. As a consequence of the aforementioned mechanisms of action of Pentoxifylline, it is useful in providing oxygen through the means of circulation to the peripheries of the body. SPECT scans have demonstrated that ME patients invariably have impaired blood circulation.

                                                                                                                                                                                                                                                 Pentoxifylline has several other possible mechanisms of action in ME other than enhancing circulation. It has the ability to reduce the cytokine IL-2 which is often high in ME patients. Dr. Klimas has stated that “In CFS, the Th2 is upregulated with pro inflammatory TNF-alpha and IL-2.” In Osler’s Web, Hillary Johnson writes, “Abnormally high levels of IL-2 have consistently been found in CFS patients by researchers. The IL-2 levels exceed those found in MS patients, AIDS patients and Lymphoma patients.”

                                                                                                                                                                                                                                                  Pentoxifylline may also reduce NF Kappa B which is also high in ME patients. Maes et al. 2007 (http://www.ncbi.nlm.nih.gov/pubmed/17693979) have written that “stimulated production of NF Kappa Beta were significantly higher in CFS patients than in controls. There were significant and positive correlations between the production of NF Kappa Beta and the severity of illness…..It is suggested that CFS patients should be treated with antioxidants, which inhibit the production of NF Kappa Beta.”

                                                                                                                                                                                                                                                                   The final inflammatory pathway that Pentoxifylline may downregulate is the cytokine TNF-alpha. Moss et al. 1999 (http://www.ncbi.nlm.nih.gov/pubmed/10535608) concluded that “our results suggest a significant increase serum TNF-alpha in patients with CFS compared to non-CFS controls….the clinical testing of TNF-alpha blockers and other anti-inflammatory agents for the treatment of this disease is warranted.”

                                                                                                                                                                                                                                                 Pentoxifylline also has a degree of anti-viral activity with Amvros’eva et al. 1993 (http://www.ncbi.nlm.nih.gov/pubmed/8284924) demonstrating its efficacy against 8 viruses. Pentoxifylline was most effective against the herpes simplex virus including a strain that acyclovir was ineffective against, as well as the vaccinia virus, rotavirus and tick-borne encephalitis virus. The authors concluded that Pentoxifylline was an “effective broad spectrum virus inhibitor.”

                                                                                                                                                                                                                                                 Pentoxifylline also has the potential ability to inhibit retroviral infection. Several papers have shown that it can (in vitro) inhibit HIV replication and a further study has revealed that Pentoxifylline can reduce the HIV plasma levels in asymptomatic patients. It is sometimes used as a secondary treatment for AIDS.

                                                                                                                                                                                                                                                 Dosage
The most common dosage of Pentoxifylline (for diseases other than ME, due to a lack of ME-Pentoxifylline studies) is 400mg taken three times a day at regular intervals for a total daily dosage of 1200mg. Studies have shown that doses of Pentoxifylline at higher than 400mg 3xday do not improve its efficacy however increase the risk of side effects. Due to many ME patients having sensitivities to drugs, a lower initial dosage may be beneficial to reduce the severity of any potential side effects. It is recommended by several sources that Pentoxifylline should be taken at 8 hour intervals in order to maintain a consistent level of the drug in the bloodstream. These sources also recommended that Pentoxifylline is taken with food.

                                                                                                                                                                                                                                                     Side Effects and Contraindications
Pentoxifylline is a xanthine derivative (in some respects similar to caffeine) and therefore should not be taken by those patients who cannot tolerate stimulants. Pentoxifylline should also be avoided by those with a peptic ulcer or those with a risk of haemorrhaging. Dr Claudia Zein, a Pentoxifylline researcher has stated that the drug has an “established safety profile” although this comment was not in relation to ME as Pentoxifylline has not been trialled on ME patients in a published study to date. Many studies have tested Pentoxifylline’s safety profile for a variety of conditions with all studies read by me having a similar conclusion. An example of these studies is by Crowder et al. (http://ang.sagepub.com/content/40/9/795.short) who administered the drug to geriatric patients and concluded that Pentoxifylline was “safe and well tolerated” at the 1200mg per day dose.

                                                                                                                                                                                                                                                                Drugs.com lists the incidence of side effects of Pentoxifylline http://www.drugs.com/sfx/pentoxifylline-side-effects.html (see extended release capsules, as these are the type commercially available.) In terms of Pentoxifylline and ME patients, a potential negative involves its potential to replicate the cytomegalovirus which some ME patients may have.

                                                                                                                                                                                                                                        Conclusion
Pentoxifylline is a potentially useful drug in the treatment of ME due to its ability to improve cerebral and peripheral circulation. Its anti-inflammatory effects, achieved through down regulating IL-2, NF Kappa B and TNF-alpha may be beneficial to ME patients. Pentoxifylline also has a degree of anti-viral and immunomodulatory ability.

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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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Piracetam for ME/CFS

                                                                                                                                                                                                                                                            Piracetam (Cerebryl, Nootrop, Nootropil) is a nootropic supplement/drug. Nootropic drugs have the effect of improving a range of cognitive functions. Piracetam has various possible mechanisms of action on ME/CFS patients including lowering blood viscosity and decreasing platelet aggregation. It may benefit some ME/CFS patients by reducing cognitive impairment and increasing circulation.

                                                                                                                                                                                                                                                                    ME/CFS Relevant Studies

This Boiko et al. study (http://www.ncbi.nlm.nih.gov/pubmed/17294097) administered patients ‘Fezam’ which is a combination of Piracetam and Cinarrizine (Cinarrizine is an anti-histamine.) The patients studied had a range of identified and heterogeneous etiologies causing their chronic fatigue including MS and CFS. The Fezam “significantly” decreased the severity of the patients’ physical chronic fatigue. 12% of patients experienced mild side effects which mainly consisted of sleep disturbances. This study was focused on patients with focal brain lesions.  It should be noted that many ME/CFS patients have focal brain lesions. Dr. Komaroff found that almost 80 percent of ME/CFS patients contained within the Incline Village outbreak had brain lesions.

                                                                                                                                                                                                                                                                 Moriau et al. (http://www.ncbi.nlm.nih.gov/pubmed/8328997) examined the efficacy of Piracetam as a treatment for both primary and secondary Raynaud ’s phenomenon. This study determined that 4 grams of Piracetam daily in synergy with 600mg of Buflomedil was the most effective treatment for Raynaud’s phenomenon out of the set of treatments generally considered effective for Raynaud’s phenonmenon. In order from most effective to least effective, the remainder of treatments were: Piracetam (8 grams per day), Buflomedil (600mg per day), Piracetam (4 grams per day) plus acetylsalicylic acid (100mg per day), pentoxifylline 1200mg per day, calcium antagonists and ketanserin (120mg per day.) This study was performed on patients with severe Raynaud’s phenomenon. The study stipulates that the effective 8g per day dose of Piracetam was reached in three smaller doses administered at 8 hour intervals. Raynaud’s phenomenon is a condition in which blood vessel spasms impair blood flow to bodily extremities. It is thought to be a symptom that affects between 30-50% of ME/CFS patients.

                                                                                                                                                                                                                                                                        Glas-schottl (http://www.ncbi.nlm.nih.gov/pubmed/2656442) performed a study that analysed the effects that Piracetam had on patients suffering from soft tissue rheumatism. This study involved both intravenous and oral Piracetam being administered to the test subjects. Piracetam was found to be “significantly superior” to the placebo in terms of all parameters studied.

                                                                                                                                                                                                                                                                       Side Effects

In the studies examined, patients rarely experienced side effects while on Piracetam. The Glas-schottl study noted one patient in the placebo group experiencing side effects while no patients taking Piracetam reporting side effects. Boiko et al. found that 12% of patients taking Piracetam experienced sleep disturbances.

                                                                                                                                                                                                                                                                             If headaches occur, some patients report choline to be a beneficial tandem treatment to reduce this side effect. Some ME/CFS patients have indicated online that they can only tolerate small doses (in the 100mg range.) Anecdotal reports from ME/CFS patients taking Piracetam suggest that starting at the recommended dosage may leave some patients feeling ‘wired.’

                                                                                                                                                                                                                                                        Obtaining Piracetam

Different countries have varying classifications of Piracetam. It is labelled as an over the counter supplement in some countries while a prescription drug in other countries. There is plentiful information online as to which countries have which corresponding medicinal status relating to Piracetam.

                                                                                                                                                                                                                                                               Dosage

Piracetam is traditionally used to treat myoclonus in doses of up to 20 grams daily however ME/CFS patients require much smaller amounts. The dosage range for ME/CFS patients generally covers the spectrum from 0.8 grams to 4.8 grams. This dosage total is normally achieved by consuming the Piracetam 3 times per day (at 1/3rd of the daily dose on each occasion) at 8 hour intervals. Some ME/CFS patients have reported that anything in excess of 0.1 grams is too much for them. As Piracetam dosage for ME/CFS patients seems to be a highly individualised thing, it may be worth starting Piracetam conservatively at a lower dose and increasing the dosage to the recommended range accordingly. 

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