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