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.
Living With Chronic Fatigue Syndrome 
cfssufferer,
I too have tried most of the treatments that you have reported on with the same results.
Have you looked at your liver phase 1 and 2 detox pathways, sulphation…etc?
I am going to try the vatrex again.; last time it made me itch badly all over and I had to stop.
I am working on my liver so I hope that now I will tolerate the treatment and I will report back.
Good luck to you my dear friend and thanks for you research.
I always say we never know what tomorrow will bring.
One day it will be a cure 🙂
Lynn
sick since age 23 current age 48 bed ridden.
Thanks for the update.
I’ve been suffering from the virus that is going around for the last 2 weeks. My nose will stop running any day now!
I was interested in your Piracetam results, I was expecting both short term benefits as well as side effects, but maybe it just doesn’t have much effect for PWC.
I have a suggestion that you might like to consider following my recent experience.
I have diagnoses of CFS, MCS, Lyme or post-Lyme or Lyme-like disease and been ill since 1988. Symptoms have varied over that time with circumstances, treatments, workloads and environments. Part of my situation is an ineffective immunity defined by me as the inability of my body to ward off certain pathogens, an unnatural susceptibility to catch colds and flu and perhaps other things.
Typically I get a cold, then some days later I get a worse than usual sore throat that slowly or quickly extends to the chest and bcomes bronchitis and/or tracheitis, together with crushing accompanying malaise. This secondary infection is susceptable to antibiotics, so I have suitable abx with me at all times (it takes a week or two to get to see your doctor here). When I get a cold or flu, I wait to see if I get the secondary sx. If I do (almost always) I start on combined clarithromycin and cefalcor.
Last week I had a cold and took these antibiotics, a week later I have improved immensely from not only the secondary infection, but also my long term symptoms — the first time in ages I’ve felt reasonable enough to easily go out and do normal (low exercise) things.
I hypothesise that this might be due to controlling a chlamydia pneumoniae infection that i’ve been dealing with for a long time. CP has a long string of actions and symptoms associated with it and is hard to kill, so even if I’m right I’ve a bit of work and a few antiotics to go yet.
Just a suggestion to see if this fits with your experience.
Hello
I have just started trying L-Serine yesterday. I have been trying LDN, but I haven’t noticed any improvements, so once my last bottle is finished I will drop it.
I wanted to comment on you feeling slight improvements when you have a virus. I have found exactly the same thing, particularly in the first few days where your body is fighting it off but it hasn’t fully hit yet.
I am sorry to read that things have gone more downwards for you, fingers crossed for you.
Hi Chooka – I don’t want to be creepy by adding to a list of suggestions with the “this worked for me, maybe it could work for you … ?”, but Goddammit! – Here’s my creepy list. The severity of what you’re going through sounds really nasty. Hang in there.
I found your blog cos my Doctor suggesting reviewing the latest British Medical Journal survey (May 2011). Summary: CBT (cognitive behavioral therapy) and Graded Exercise Therapy *may* help some over a year (I read GET made you worse?). Unfortunately not real change long-term, just a bit better while doing treatment.
ARTICLES:
BMJ Article: http://www.meassociation.org.uk/?p=5757
AND: http://www.bmj.com/content/340/bmj.c1018.full.pdf?sid=331b07e7-0179-4b96-9250-7e1e3baac977
UK ME Association Survey:
Click to access 2010-survey-report-lo-res10.pdf
– This survey is easy to read, large sample, with tables of percentages – what methods & therapies worked / what didn’t for respondents.
Also latest research from the ‘Invest in ME’ conference London May 2011 –
http://www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20Conference%20Report.htm
Summary: people looking at HEV (human enterovirus), genetic therapy, leaky gut syndrome & probiotics, XMRV, neurotransmitters, etc.
ME:
I have had CFS diagnosed for two & a 1/2 years, and have had to figure out how to maintain my health. I have many of the same symptoms you have, but not the severity – for me like Day 3-5 of a 7-day flu for a ‘normal’ person. Background of Epstein-Barr/CMV glandular fever, then subsequent long-term infections + antibiotics, then physical overwork & bad hours = CFS. My health fluctuates, waves up & down, but like you – can take me hours to get going in the day, good weeks & bad weeks.
A lot of what you’re doing seems pharmaceutical. I guess this is an obvious choice since you’re in such a severe place right now? My body’s a bit chemical-sensitive, and my health’s always been a bit high-maintenance, so I’ve learned things I can do over the years, non-pharmaceutical, that help me. So I can suggest some gentler, supplemental things that may or may not help you? – Up to you to test & see if it works with you.
These are the Things I Tried that Worked for Me:
1. I have a background of food intolerances (had bad ‘allergy’ symptoms to lactose/cows milk) so was already on a lactose-free diet (but yogurt & some cheeses are fine – fermented, the bacteria changes the protein). My Doctor suggested a gluten-free diet, and this seemed to help a bit too. Tested, but not coeliac.
2. I have had previous Liver/Gall-Bladder issues (with Glandular Fever), so was starting my day drinking half a squeezed lemon in hot-water – bit like a flu remedy, bit also helped with clean out my stomach, start up the bile, I think.
3. Drinking lots of water during the day (detox), with lemon slice & ginger root in it – (ginger is good for nausea).
4. Ginseng tea & Green tea – again both detoxing, sometimes with manuku honey (healing, antibacterial & I think anti-viral?)
5. I have done Yoga for years, and after 1 & 1/2 years CFS, I discovered that the more times I did Yoga a week, the more even my sleep patterns were (I hated the insomnia one night – collapse for 12-13 hours the next). I need to do yoga daily, 6-9 times a week if I can, to be better the following week. I have done Iyengar Yoga – (largely from a book, though classes too) for decades, so for me: sun salute or a lesson in the morning & inverted poses at night. Yoga apparently helps balance the internal body systems – the organs and hormones. Inverted postures can help balance out the brain.
BUT!! I had done Yoga for years – and when I first started, it was definitely demanding & changed how my body felt (imagine like a physical way to change how the ‘chi’ flows – it works on the nervous system). In the UK ME Association Survey there were a proportion of people who got worse on Yoga (27%?) so it’s good I think, but really taking it gently when you start – not over-exertion. For me headstand was helping with brain fog, but you need to learn the posture, be ready for the pose, and have strength.
You were saying you had no energy & bad brain flow – I googled some links for easy, gentle restorative & inverted postures. I wonder if Viparita Karani / Resting Upside Down pose may help your brain? Probably okay for where you are now. I’ve found it very relaxing:
– Restorative: http://www.yogaartandscience.com/poses/restpos/vk2/vk2.html
– Inverted: http://www.yogaartandscience.com/poses/inver/ahal/ahal.html – for when you’re having a good day, this is a bit stronger.
Maybe if you like it, & get better, an Iyengar book will let you learn the poses slowly as a beginner? Yoga is athletic a bit further along.
6. Biorhythms & Daily Routines – the forced disciplines of having the lights off at 10-10:30PM, and on at 8AM, going to bed at 8-9PM sometimes – trying to maintain a definite day-night routine to try & keep my brain in sync. I need 9.5 hours sleep+rest, an article I read was that the healthy range was 7-9 hours sleep. Computer off in the evening.
None of these things exactly ‘make me better’ – they just prevent me getting worse i.e. I get sicker if I don’t do them.
7. Nutrition: I’ve been trying Multivitamins, B complex, Evening Primrose, CoQ10, Cod Liver Oil (is Omega, Vit. A+D), protein powder (lactose-free: ‘Sacha Inchi’ matakana.superfoods.com). I use a website to monitor my diet nutrition.
8. Probiotic Foods: Raw Garlic ( I kid you not!), avocado, organic yogurt, bananas, soft-boiled eggs, fermented veggies: e.g. home-made sauerkraut, kimchi? (all with respect to food sensitivities)
9. GAPS Diet / Whole-foods & Organic Diet – again a “detox the organo-phosphates & the chemicals of the 20th Century Food Industry out of my brain” solution. I started this two weeks ago (with organic veggies) and it’s the first time I think I have something that will actually slowly improve things – i.e. my health still cycles down (I’ve realized in tandem with my own hormonal cycle), but for the first time I had a clear-headed several days, and a good-ish week.
The ‘Gut & Psychological Syndrome’ Diet is one developed by a GP for Autistic/Asperges kids, and is like a detox diet that helps with brain conditions. The idea is that the health of the Gut – or ‘Leaky Gut Syndrome’ sets off the immune system, and by healing the gut and repopulating it with healthy probiotic bacteria, the body can then rid itself of whatever the disease / infection is. Hippocrates: “all health begins in the gut” ?
It’s here on the net: http://www.gapsdiet.com/GAPS_Outline.html
It’s a book, but actually a lot of the intro diet stuff is on line, at Wiki, and here is a food list:
– http://www.gutandpsychologysyndrome.com/wp-content/uploads/2009/11/GAPS-Diet-Foods.pdf
Maybe it’s just working for me cos it’s a whoie-food diet with organic veggies, but it’s been the most noticeable change in anything I’ve tried.
Sorry for the long post – Sorry to hear you’re so ill – Remember you’re just in a crap situation & you will eventually, somehow, find your way out. It *may* take some time. Perhaps the company of a Wild Snail Eating?
Like my Doctor said today – “with CFS if someone recommended wearing red underpants, you’d do it”. Here’s to Red Underpants 🙂
Hi Janet,
I have ME/CFS, started the GAPS diet 2 days ago and am wondering if the diet is working for you longer-term (if you continued to improve or get worse etc.)?
Look into something called “low dose naltrexone” if you havent already done so. I have been taking 4.5mg everyday for a little 3 months and it definitely helps. Not a miracle pill, but at least its something.
@John
Thanks for the comment. I am also an advocate of LDN and have been using it for the past 18 months. It has slightly improved the quality of my sleep however my other symptoms remained untouched. I have written about it in these places: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/02/26/low-dose-naltrexone-for-cfs/
https://livingwithchronicfatiguesyndrome.wordpress.com/2010/08/11/the-results-low-dose-naltrexone-for-cfs/
https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/17/update-fludrocortisone-and-low-dose-naltrexone-treatments/
https://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/08/10-of-the-most-effective-treatments-for-cfs/
Thanks again,
All the best 🙂
I am currently on Cholestyramine. Has anyone else tried this yet? Have been researching and trying things for years, but recently found an Integrative medical Doc who has an interesting strategy. This Cholestyramine was recently approved for the treatment of neurotoxins. It has been used to relieve severe neurological diseases including Parkinsons, and Dimentia. PLEASE EMAIL ME DIRECTLY if you have experience with this medication. jensfitness@gmail.com Want to try the neurotoxin test? Go to richieshoemaker.com. Costs $15. Takes about 5min. FOLLOW THE DIRECTIONS EXACTLY. Theory : When neurotoxins are present, there is reduced blood flow to the retina, and vision is disturbed. My vision test did in fact get better after the first round of taking Cholestyramine, but no change in symptoms yet. Doc put me on a second round . . . HELP! Anyone????
Hi there I note your comments re salicylate avoidance. My experience has been the opposite. I went on the Royal Prince Alfred Elimination (Victoria, Australia) to see if food intolerances were the cause of my reflux and gastritis. The diet and receipe book are very easy to follow – the best $84 I’ve spent. I found out that since getting severe ME/CFS I’ve become intolerant to salicylate and now only eat low salicylate food. Even moderate salicylate foods upset my stomach.