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.
Hi,
Have you looked into Mitochondrial dysfunction?
Click to access ep-3-10.pdf
Treatment is usually Co enzyme Q10 and carnitine.
@ Sarah, Thanks for the comment. Yeah, I’ve tried the whole spectrum of mitochondrial dysfunction treatments. I continue to take D-ribose daily and several other secondary mitochondrial treatments daily. In the past I have tried many of Dr. Myhill’s recommended treatments however I believe that based on my lack of responsiveness to these aforementioned treatments that I must mend my primary ME etiology. Hopefully after determining the precipitating factor/s of my ME and then gaining some improvement, I will then seek further improvement from a broader range of mitochondrial based treatments.
I noticed I got more severe headaches directly after taking higher doses of Melatonin (3mg especially), but 0.75 mg appears to be OK. That said, I’ve had my headache (of varying severity) for about 10 years, so who knows right?
Re your comments about headaches after taking Melatonin. I do not suffer from ME: however, throughout my long adult life I too have suffered similar headaches after sleeping “too long”.
CFS Sufferer,
Sorry you’re going through all this. I read through your symptoms and I feel for you. For me, that kind of severity was short, thank God.
I’m sure you have heard of just about everything under the sun related to CFS, either from here or your own research. But I can’t help mentioning one that got me out of a hole I was stuck in for a long time.
If you’ve tried Atlas Orthogonal Chiropractic (very different than regular chiropractic), then ignore the rest of this note. 🙂
Your headaches (aside from the Melatonin induced ones) make me wonder about your spine being out of line. When I started chiropractic with an Atlas Orthogonal chiropractor, within a couple months I started feeling a lot better (though the first adjustment made a difference). It’s not a 100% cure by any means. It can just eliminate one of the underlying causes. For me, it happened to be one of at least 5 causes (some yet to be treated).
If you have 3.5 minutes, and aren’t audio-sensitive right now, check out:
It’s a little video about it, with some good info. I found that structural damage can throw off the whole system. And fixing it can improve what chemical balancing cannot.
Anyway, I pray you’ll be able to recuperate.
Take care,
~~Clarissa
Thanks for your blog. I’m exploring the possibility of my 12 year old daughter taking fludrocortisone after some positive personal stories (concerning adolescents) out of the US. Was good to read your summary from a while ago. Your scientific approach is useful…I really hope you get a significant result from using your body as a test tube one day soon. I thank you on my own behalf and that of my daughter’s.
Hi! I am in Miami just having seen Dr. Nancy Klimas though I live in Italy and Colorado. Drugs that have worked for me so far: valtrex, low dose naltrexone, imunovir, fludrocortosine, 100k units vitamin D… Dr. Klimas has me starting nueroprotek. Sometimes it is not just about feeling better. But building our immune response to fight off risks of cancer which these viruses all make us at risk for.ugh… Thank you for your blog. Check out. my YouTube channel when u have time.
Have you tried Lauricidin at all? Also, any tips for dealing with a herxheimer reaction??? (die-off)
Hey,
You haven’t updated for a while, how are you doing?
It’s Andrew, I sent you an email over a year ago, but I’ve lost your email address. In case you don’t remember, I’m in SA too. Send me a message if you want to chat.
Later.
@Andrew thanks for the comment, it encouraged me to update my blog (I just posted a new entry) detailing my progress. How have you been’?
Trying taking germanium sesquioxide transdermally. You can do this by opening the germanium sesquioxide capsule, and simply rubbing the finely powdered contents into an area of your skin, such as the skin on the top of your thighs, where it will be absorbed over a period of several hours.
The oral bioavailability of germanium sesquioxide is pretty low, less that 10%, so you are in fact losing most of this supplement when you take it orally.
Reference: http://www.ncbi.nlm.nih.gov/pubmed/7837032
I found that 50 mg of germanium sesquioxide administered transdermally provided a noticable energy boost for my ME/CFS.
Higher doses of transdermal germanium (100 to 200 mg) I found gave me more energy still, but also started to cause some irritability an aggression, so for this reason I tend not to take more than around 50 mg transdermally.
Germanium boosts endorphins, which are low in some ME/CFS patients.
Hi, have you been tested for any of the multiple infections, which have been implicated by some researchers? I’ve been reading through the studies done by Garth L. Nicolson, PhD and will be bringing some of the publications to my doc, who practices integrative medicine. He’ll sign off any testing I want done, so I’m going to have him screen for the bacterial and viral infections commonly found in people with CFS/ME/FMS, as well as people with more serious neurodegenerative disorders, like ALS and MS.
I honestly feel like it’s pathogenic, for me. It came out of nowhere, and hit me like a truck. It was afraid a very stressful period in my life so my immune system might have been compromised. Also, my son exhibits many of the same symptoms as me and my dad, sister and 2 aunts all have fibro and chronic fatigue.
I’d be really interested to hear from others, on whether they’ve been tested for specific bacterial/viral infections.
-A
Hey AJ,
I’ve had chronic fatigue, and was tested for viruses (negative) and candida. If you’ve taken antibiotics, especially heavily or recently, consider getting tested for candida. That can sap your energy and otherwise not seem to be making you sick. My only other symptom was a stuffy nose (that I’d had for years). When I got the correct treatment (there are many options, some pharmaceutical, some natural like olive leaf and syntol), I began to really improve.
So don’t go for just bacterial/viral. Check out fungal too. That’s the insidious type of infection that can make you miserable without having any clue why.
Also, are you in an area where there are tics? Consider lyme disease as well. Friends of mine are batting this. There is different testing, but the only true test for lyme is to look at blood cells under a microscope. Other tests won’t necessarily show it. And be aware, in some states (like Pennsylvania), it’s illegal to treat lyme. Sounds crazy, I know, and I wouldn’t believe it if my friends hadn’t run into this again and again. They literally have to go out of state to get treatment. Just be aware that you have to find good resources to actually discover this disease in the first place, and properly treat it.
Hope this helps, and best wishes to you in seeking recovery. If you are in the Phoenix area or Omaha area, or near Indiana, I can recommend resources/doctors, but the rest of the states I have no idea. 🙂
~~CRW
You might want to up the dosage considerably on the germanium to gain any benifits. The dosages Dr Asai used was in the grams not milligrams.
I know this is expensive stuff but Germanium has also the added benifit of being able to detoxify all cells of heavy metals and other oxidable toxins. The process for this might be a lengthy one we are talking about grams per day for months but with the result of a toxin free body.
Otherwise , Astralagus in high dosage and rebuilding the brain would be my best tips for CFS. Thunder God Vine is another one but a dangerous one. Might be worth the risk if you know what you are doing,
@Johanna
Thanks for the comment and all the useful info! I am interested in trying the Germanium again and at a higher dosage like you mention. I will also look into the other treatments you mention. Thanks again for the comment and wishing you all the best. 🙂