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.
Living With Chronic Fatigue Syndrome 
Hi mate,
sorry to read so many tries and errors. It’s the same with me.
Did you every try alternating shower? I believe it is not a cure for cfs, but definitely helps to stabilize the body. I’m doing it for 4 month now (having cfs since 2008). It’s some kind of “sports” to my body. I do it consequently after showering: 3 times hot and 3 times cold, beginning from the feet and move up and down again whatever you feel comfortable with. Started a few weeks just over my feet, worked up to my knees, my hip, now I’m even up to my belly button.
I often feel exhausted from doing that routine but definitely helps my circulatory. My temperature is way better since doing this. Even stable (I’m from Germany and atm I can go out just in jeans without several leggins pants unter. I also got rid of night sweats by this, further am I able to sleep again without external heat like from a water-bottle.
I really hope this is any help to you. I bearly believe there is any herb that gets us better (even though I’m trying a lot too). The alternating showers is almost the only thing that helped me constantly.
All the best!
Daniel
Helllo, thanks for your summary. I’ve also tried many things, for so many years… The only thing that has made a difference is Rhodiola. It has helped me manage my stress. Good luck!
Hi, I am sorry to hear that you have been going through a crash. I have also been going through a crash of epic proportions.
I am curious to know your thoughts on Ampligen. Have their ever been any patients who have tried Ampligen and not regressed after the medication was stopped? I have not been able to find out.
The two things people keep telling me are 1. Ampligen is obscenely expensive (25,000 USD/year) and 2. Everybody relapses.
My thoughts are that with all the cash I spend on treatments that don’t work, I could save up for Ampligen. I need another cfs person’s thoughts. I hope your crash ends soon. Feel free to email if you are up to it.
Hi. I stumbled across your blog tonight, upon googling Cordyceps Sinensis and CFS.
In your blog, you mention that obtaining genuine Cordyceps Sinensis in western countries can be problematic, but that you managed to find a large American company that cultivates it indoors. Could you please email me the link to the homepage of the company you used?
I am a bit wary of trying it, since I understand that Cordyceps is a fungus, and I was advised to avoid all fungi and yeast as they can trigger my IBS symptoms. But I have read that it may help support the adrenals and provide increased stamina, so I am still willing to give it a try.
I also note with interest your ability to gain some sleep quality improvement on a very low dose of Melatonin. I have tried many brands, but always had nothing but negative side effects (disturbed sleep, hungover the next day). However, I never took anything less than 1 mg. Based on your experience, I am going to give it another shot. Could you email me the brand you use?
Thanks, and good luck with everything. I admire your tenacity, and your resolve to share your experiences with others. Maybe together we can help each other find some light at the end of what for me has been a very long tunnel.
Cheers…Nelson
Hi
The problem with trying different things sequentially is that you probably need a lot of therapies at the same time to feel better.
Dr Bradstreet, a DAN! doc, said something similar at one of the Autism One conferences.
I was also wondering how you got hold of Nexavir. It can be pretty pricey. I’m not sure if you’re in Australia or the UK, but if you’re in the UK, I’d be interested to know the source & the price.
Thanks for any info.
Good luck with your experiments.
Hi
I was wondering if you have ever tried Nystatin to see if it helps.
Hi – thanks for your blog and I do hope you get better.
I too have CFS and am in Adelaide – which Dr. did you get an LDN script from?
I don’t know if you’ve tried it but I’ve found the Guaifenesin protocol to be helpful http://www.fibromyalgiatreatment.com (I have CFS not fibro) I have been one of those ‘severe’ bedridden cases, slow responders; but it is helpful nontheless. I would like to try LDN for my daughter though.
best wishes,
Mel
Hi,
Are you based in the UK? If so, how did you get hold of Nexavir please?
I have a private Dr in England willing to prescribe it – but they can’t source it 😦
Many thanks!
@Julia,
I’m from Australia, not the UK hence I’m sorry but I’m not sure of the location to source your Nexavir from. Nexco Pharma, the company that sells Nexavir may be able to assist you. They can be contacted through the email addresses found here: http://www.nexcopharma.com/
You might want to try transdermal magnesium (or, what come call magnesium oil). Magnesium chloride seems to be most effective (superior to magnesium sulfate). http://drsircus.com/medicine/magnesium/magnesium-chloride-benefits Good luck with your ongoing efforts. I’ve been struggling with CFS for over 20 years and so far have found a few things that keep me from total debilitation but I’m not where I want to be ultimately. Not yet…
Wow, Mel your treatment sounds fantastic. I can add another experience. Did anybody try Ribose? It is on Dr.Teitelbaums protocol: https://secure.endfatigue.com/ After 2 weeks I had dramatic results. People should also check if they have problems with pyroluria and
methylation (a lot of us definitively do), and treat that as well.