Hi all, this is my first post on this forum, which I happened to stumble across when I researching Rich's Methylation Protocol. I've currently had CFS for about 12months - I'm 28 years old now (I'll dare myself to say I'm in the recovery phase) but I've also noticed some strange things with this condition & I'd like to hear if anyone else can weigh in on this. (Please skip the following 3 paragraphs if you like - I just provided some background)
To start with my fatigue seemed to start after a suspected infection (I haven't been able to find anything pathogenic) - I had a series of short but sharp cold or flu like illnesses last Summer (I was living in Sydney, Australia at the time). This for me was unusual cause normally I never get those sort of things that often, particularly in the warmer months. At the time I had been doing a quite intensive exercise CrossFit regime & I was doing some crazy workouts for Tough Mudder - which is a 20km group obstacle course...
I had also started a pressured new job so between all this I suspect that I was vulnerable to CFS because of the stress I was putting myself through. My CFS symptoms didn't seem to start as sharp as some people do, but it did begin some time around when I was a little sick - I started noticing I was tired all the time (sleep was unrefreshing, at work I felt I had to sleep all the time), I was losing my memory & my concentration, I started having sugar/caffeine cravings, started developing migraines. I was also beginning to make basic mistakes repeatedly & I could not focus my mind on my job. The manager soon after called me in for a 'performance review' which was basically a 'shape-up or ship out' thing. I tried explaining that I wasn't feeling or sleeping well, but he refused to take in anything I had to say (apparently my loss of performance was all laziness on my part). I soon figured out that regardless of my intentions that he was going to fire me (I was in a 6month probation so I had no choice in the matter) so I took the initiative & resigned. At the time I didn't know I had a chronic illness, I didn't know what was wrong with me, I had trouble thinking & speaking rationally - what I should have done was walk out & phone in sick as long as I could so to at least get paid for longer (normally I'm not one to do things like that but considering how the company treated me under the circumstances it might have been a smarter thing to have done)...
Nonetheless I did feel drained so I thought I'd take it easy for a bit and soon I'd be feeling better & able to get back into work again. Despite my circadian rhythm now being broken I continued with my crossfit exercise regime although it did seem like I was no longer improving in stamina. About a month later I ran the Tough Mudder (20km circuit) & that was really when I learned something wasn't right. I got through it ok, but once I got home I felt an absolute trainwreck. I slept the evening & later through the night. The next morning I was still feeling crap (post-exercise exhaustion) met up with the people I ran with & they were all looking and feeling 100% fine. That was when I realised something was wrong. Any follow up exercise I tried resulted in post-exercise burnout so I stopped the training & started investigating what was wrong. Since then it seemed like my symptoms gradually get worse, orthostatic hypotenstion, brain fog, poor quality & unrefreshing sleep, post exercise exhaustion, cold,light, noise senstivity etc regardless of what I tried.
The first bizarre thing that happened was in June I went on a gold/sapphire prospecting camping trip for about a month from Sydney up to Clermont, QLD (near the tropic of Capricorn). I knew I wasn't in shape to work but I was determined to do something so I joined a prospecting club that happened to be preparing for their annual trip. Although before I left I was feeling so horrible with CFS symptoms I was honestly afraid to go, I wasn't sure if I could handle the 1600km drive or if I would have any energy to do anything.
Well I did go & well I did seem to get up there ok, and then here's where it gets interesting. I noticed after a few days of being away (we stayed at a camp site - I had a tent pitched) my CFS symptoms largely disappeared - I was happy again, sleeping well, energized (not quite 100% & still a bit groggy on some days but way better than before)....
I could get to sleep without melatonin & I could wake easily - see being outdoors all the time the sun sets in QLDs winter around 6pm so by the time it's around 9pm I had been in the dark for about 3 hours so I felt ready to sleep. And I could wake with the sun at about 6:30-7am each morning feeling refreshing (this was impossible back home!
After a couple weeks of not finding any gold I drove to the sapphire fields which was even more remote, and my energy levels seemed to improve more, I was able to dig though & break up some cemented ancient river beds to get gravel out & extract the gems. When I left I even had the energy to climb an ancient volcano about a kilometer of the track - I experienced no post-exertional fatigue. The bizarre thing was, the recovery seemed to happen by itself.....
I was feeling pretty good about all this until I got down to Brisbane & visited some relatives. They took me around the city and then I started to notice a very faint foggy feeling in my mind. I woke the next day with CFS symptoms again more noticeable - a little more fogginess & less energy.
Then I stayed with another relative in Port Macquarie (between Sydney & Brisbane) & after sleeping there for a night I awoke feeling absolutely dreadful, my sleep was unrefreshing & I felt crap. Somehow all the symtoms and CFS had returned or been retriggered...
Over the coming months I was back home I got worse & worse, orthostatic hypotension, brain fog started crippling me to the point where it became dangerous for me to drive (I missed a give-way sign and very nearly had a crash, I could barely stand up still for more than 5 minutes without feeling like feinting.
I ended up moving to Hobart, Tasmania in October 2013 and my symptoms seemed to recover a little when I got there but things soon got worse again, I was now battling depression & I had lost most of my memory.
Then the next interesting thing happened I had read about Vitamin B12 injections so I started my first one in November. And wow the first injection felt like I had been injected with amphetamine or something (It certainly wasn't - I bought the hydroxycobalamin from a pharmacist). The effect seemed almost instant, within a few minutes I felt like a million dollars, I was able to interact with people and laugh and function again. My cognitive function returned, my depression disappeared, energy lifted. It was that effective that I honestly believed I was cured. I certainly don't think it was placebo because I had put myself though herbal detoxes before having told myself this would work- partly how I got through the last year was telling (and believing) myself that the next thing I took would make me better).
However after a week I noticed the effect wearing off so I went for a follow up injection and again I felt stimulated. Feeling so good from these I had more of them & after several injections I was able to wean myself off prozac. My memory had returned, my mood was stable & the depression was gone.
My B12 levels when I developed CFS were about 370 pmol/L (in Australia our test range is 145-637). I had been taking heaps of cyanoB12 that a naturopath gave me so my levels had increased but I did not seem to have any effect from B12 until the hydroxyB12 injection.
Now I don't seem to get any immediate effect from B12 injections, I noticed every successive injection I had seemed to have less stimulant effect which coincided with a more general improvement of symptoms.
However I still had recurring symptoms and I realised that part of this was caused by chemical sensitivity. I had recently painted my room & found that sleeping or even walking in there would make me feel sick, I would get stinging eyes, sore nose & a general feeling of being poisoned. It took me time to realise this but every time I went outdoors for some time I would feel a little better and if I slept in I would feel worse (as I was inhaling more of the chemical fumes). I tested this by sleeping in a different room that was bigger & had more natural airflow & hadn't been recently painted and I noticed a sharp improvement in symptoms. So now I will not sleep or even stay in a room where the air smells stuffy or strange. I notice the same effect will happen immediately if I go into supermarkets particularly near the chemical aile. I realised this was probably part of why my symptoms improved when I when camping outdoors in Queensland. Somehow my body was reacting to chemicals which definitely seems to cause my problems with sleep and that seems to drive a lot of my CFS symptoms.
Lastly interesting observation is that recently I started seeing a holistic doctor who treats CFS patients. At the time I had been taking
Rich 's Methyation Protocol in addition to Myhill's Mitochondrial rescue package of ribose, coQ10 & Acetyl -Carnitine
In addition to this he gave me a range of things to support nutrition & recovery which I think is definitely working. Also to this I started taking GABA, 5 HTP to to help sleep (it works great with melatonin) & N-Acetyl Cysteine (I read that it builds glutathione & also scavenges excess glutamate in the brain - so it sounds perfect for CFS).
Now it's only been about 3 weeks but I've noticed that since being on GABA & N-Acetyl Cysteine that the baseline anxiety which I had struggled with for much of my life seems to have disappeared. I also noticed I seem to have much better control over my mood, I feel much better and I seem to have lost the sugar cravings I used to have that led to go on chocolate binges.
That's as far as I've come so far just hoping the protocol keeps working
Apologies for the length of this post but to summarise can anyone relate to these 3 things...
1. Camping in the wild seems to resolve some or many CFS symtoms which return when you are back home? Does this related to chemical sensitivity to household molds & fumes from paints, carpets, solvents etc that seem to be activated with CFS...
2. Can Hydroxy B12 injections really have that effect (to clear depression, revive memory loss etc), I know it scavenges Nitric oxide, could that explain a sudden & relaxing stimulant effect?
3. Has anyone here reported benefits to other problems like anxiety by taking N-Acetyl Cysteine?
Thanks everyone & sorry again for the long post.
To start with my fatigue seemed to start after a suspected infection (I haven't been able to find anything pathogenic) - I had a series of short but sharp cold or flu like illnesses last Summer (I was living in Sydney, Australia at the time). This for me was unusual cause normally I never get those sort of things that often, particularly in the warmer months. At the time I had been doing a quite intensive exercise CrossFit regime & I was doing some crazy workouts for Tough Mudder - which is a 20km group obstacle course...
I had also started a pressured new job so between all this I suspect that I was vulnerable to CFS because of the stress I was putting myself through. My CFS symptoms didn't seem to start as sharp as some people do, but it did begin some time around when I was a little sick - I started noticing I was tired all the time (sleep was unrefreshing, at work I felt I had to sleep all the time), I was losing my memory & my concentration, I started having sugar/caffeine cravings, started developing migraines. I was also beginning to make basic mistakes repeatedly & I could not focus my mind on my job. The manager soon after called me in for a 'performance review' which was basically a 'shape-up or ship out' thing. I tried explaining that I wasn't feeling or sleeping well, but he refused to take in anything I had to say (apparently my loss of performance was all laziness on my part). I soon figured out that regardless of my intentions that he was going to fire me (I was in a 6month probation so I had no choice in the matter) so I took the initiative & resigned. At the time I didn't know I had a chronic illness, I didn't know what was wrong with me, I had trouble thinking & speaking rationally - what I should have done was walk out & phone in sick as long as I could so to at least get paid for longer (normally I'm not one to do things like that but considering how the company treated me under the circumstances it might have been a smarter thing to have done)...
Nonetheless I did feel drained so I thought I'd take it easy for a bit and soon I'd be feeling better & able to get back into work again. Despite my circadian rhythm now being broken I continued with my crossfit exercise regime although it did seem like I was no longer improving in stamina. About a month later I ran the Tough Mudder (20km circuit) & that was really when I learned something wasn't right. I got through it ok, but once I got home I felt an absolute trainwreck. I slept the evening & later through the night. The next morning I was still feeling crap (post-exercise exhaustion) met up with the people I ran with & they were all looking and feeling 100% fine. That was when I realised something was wrong. Any follow up exercise I tried resulted in post-exercise burnout so I stopped the training & started investigating what was wrong. Since then it seemed like my symptoms gradually get worse, orthostatic hypotenstion, brain fog, poor quality & unrefreshing sleep, post exercise exhaustion, cold,light, noise senstivity etc regardless of what I tried.
The first bizarre thing that happened was in June I went on a gold/sapphire prospecting camping trip for about a month from Sydney up to Clermont, QLD (near the tropic of Capricorn). I knew I wasn't in shape to work but I was determined to do something so I joined a prospecting club that happened to be preparing for their annual trip. Although before I left I was feeling so horrible with CFS symptoms I was honestly afraid to go, I wasn't sure if I could handle the 1600km drive or if I would have any energy to do anything.
Well I did go & well I did seem to get up there ok, and then here's where it gets interesting. I noticed after a few days of being away (we stayed at a camp site - I had a tent pitched) my CFS symptoms largely disappeared - I was happy again, sleeping well, energized (not quite 100% & still a bit groggy on some days but way better than before)....
I could get to sleep without melatonin & I could wake easily - see being outdoors all the time the sun sets in QLDs winter around 6pm so by the time it's around 9pm I had been in the dark for about 3 hours so I felt ready to sleep. And I could wake with the sun at about 6:30-7am each morning feeling refreshing (this was impossible back home!
After a couple weeks of not finding any gold I drove to the sapphire fields which was even more remote, and my energy levels seemed to improve more, I was able to dig though & break up some cemented ancient river beds to get gravel out & extract the gems. When I left I even had the energy to climb an ancient volcano about a kilometer of the track - I experienced no post-exertional fatigue. The bizarre thing was, the recovery seemed to happen by itself.....
I was feeling pretty good about all this until I got down to Brisbane & visited some relatives. They took me around the city and then I started to notice a very faint foggy feeling in my mind. I woke the next day with CFS symptoms again more noticeable - a little more fogginess & less energy.
Then I stayed with another relative in Port Macquarie (between Sydney & Brisbane) & after sleeping there for a night I awoke feeling absolutely dreadful, my sleep was unrefreshing & I felt crap. Somehow all the symtoms and CFS had returned or been retriggered...
Over the coming months I was back home I got worse & worse, orthostatic hypotension, brain fog started crippling me to the point where it became dangerous for me to drive (I missed a give-way sign and very nearly had a crash, I could barely stand up still for more than 5 minutes without feeling like feinting.
I ended up moving to Hobart, Tasmania in October 2013 and my symptoms seemed to recover a little when I got there but things soon got worse again, I was now battling depression & I had lost most of my memory.
Then the next interesting thing happened I had read about Vitamin B12 injections so I started my first one in November. And wow the first injection felt like I had been injected with amphetamine or something (It certainly wasn't - I bought the hydroxycobalamin from a pharmacist). The effect seemed almost instant, within a few minutes I felt like a million dollars, I was able to interact with people and laugh and function again. My cognitive function returned, my depression disappeared, energy lifted. It was that effective that I honestly believed I was cured. I certainly don't think it was placebo because I had put myself though herbal detoxes before having told myself this would work- partly how I got through the last year was telling (and believing) myself that the next thing I took would make me better).
However after a week I noticed the effect wearing off so I went for a follow up injection and again I felt stimulated. Feeling so good from these I had more of them & after several injections I was able to wean myself off prozac. My memory had returned, my mood was stable & the depression was gone.
My B12 levels when I developed CFS were about 370 pmol/L (in Australia our test range is 145-637). I had been taking heaps of cyanoB12 that a naturopath gave me so my levels had increased but I did not seem to have any effect from B12 until the hydroxyB12 injection.
Now I don't seem to get any immediate effect from B12 injections, I noticed every successive injection I had seemed to have less stimulant effect which coincided with a more general improvement of symptoms.
However I still had recurring symptoms and I realised that part of this was caused by chemical sensitivity. I had recently painted my room & found that sleeping or even walking in there would make me feel sick, I would get stinging eyes, sore nose & a general feeling of being poisoned. It took me time to realise this but every time I went outdoors for some time I would feel a little better and if I slept in I would feel worse (as I was inhaling more of the chemical fumes). I tested this by sleeping in a different room that was bigger & had more natural airflow & hadn't been recently painted and I noticed a sharp improvement in symptoms. So now I will not sleep or even stay in a room where the air smells stuffy or strange. I notice the same effect will happen immediately if I go into supermarkets particularly near the chemical aile. I realised this was probably part of why my symptoms improved when I when camping outdoors in Queensland. Somehow my body was reacting to chemicals which definitely seems to cause my problems with sleep and that seems to drive a lot of my CFS symptoms.
Lastly interesting observation is that recently I started seeing a holistic doctor who treats CFS patients. At the time I had been taking
Rich 's Methyation Protocol in addition to Myhill's Mitochondrial rescue package of ribose, coQ10 & Acetyl -Carnitine
In addition to this he gave me a range of things to support nutrition & recovery which I think is definitely working. Also to this I started taking GABA, 5 HTP to to help sleep (it works great with melatonin) & N-Acetyl Cysteine (I read that it builds glutathione & also scavenges excess glutamate in the brain - so it sounds perfect for CFS).
Now it's only been about 3 weeks but I've noticed that since being on GABA & N-Acetyl Cysteine that the baseline anxiety which I had struggled with for much of my life seems to have disappeared. I also noticed I seem to have much better control over my mood, I feel much better and I seem to have lost the sugar cravings I used to have that led to go on chocolate binges.
That's as far as I've come so far just hoping the protocol keeps working
Apologies for the length of this post but to summarise can anyone relate to these 3 things...
1. Camping in the wild seems to resolve some or many CFS symtoms which return when you are back home? Does this related to chemical sensitivity to household molds & fumes from paints, carpets, solvents etc that seem to be activated with CFS...
2. Can Hydroxy B12 injections really have that effect (to clear depression, revive memory loss etc), I know it scavenges Nitric oxide, could that explain a sudden & relaxing stimulant effect?
3. Has anyone here reported benefits to other problems like anxiety by taking N-Acetyl Cysteine?
Thanks everyone & sorry again for the long post.
