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.
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:
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.
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.
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.