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My CFS Story & 3 bizarre phenomena

Discussion in 'General ME/CFS Discussion' started by redaxe, Feb 20, 2014.

  1. redaxe

    redaxe Senior Member

    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.
    Asklipia, merylg and helen1 like this.
  2. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

    Zogor-Ndreaj, Shkodër, Albania
    Welcome to PR redaxe.

    It may not feel like it for you, but it seems you've been one of the luckier one of us.
  3. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Hi redaxe, welcome to the forum.

    Thanks for telling the story of your experiences so far. While we all have different experiences and struggles during onset of this disease, there do seem to be some distinct patterns and parallels too.

    I don't really want to say this, but your initial experiences sound like that of relapse-remitting, followed by your current relapse. The fact that it occurred during camping could have many explanations and could just be a coincidence. Though it may be worth trying to go on such a trip again to see if it has the same effect.

    I had a similar experience in my early days too - about 3 months of ill health, followed by months of reasonably good health then regular relapses lasting a month or two, until I stopped recovering. At the time, I remember B12 making a big difference and I do believe that it is part of the key, but I've never really discovered out a good explanation why.

    Anyway, the first few years have the highest likelihood of recovery. So keep 'pacing' to manage your activity levels, keep up all the things you are trying and hopefully you will recover fully.
    Valentijn, redaxe and MeSci like this.
  4. Sparrow

    Sparrow Senior Member


    1) I don't think camping does much for CFS, but it might absolutely help with chemical sensitivities. It's possible that's a bigger piece of the puzzle for you than you had realized before. I would definitely try another camping trip and see if you have the same effect (and then consider some high quality air purifiers, etc.).

    2) B12 can definitely affect depression, etc. People who are deficient in B12 very commonly get depressed and low on energy. It seems likely that for some reason your body is able to utilize the B12 from injections much better than pills. Your blood levels seem okay before the injection, but you never know whether the body is actually making full use of it (I would guess not in your case). Whatever the reason, I'd definitely stick with them. It's great that they helped.

    3) GABA is typically used to treat anxiety issues. It's the neurotransmitter known for keeping us calm. So it makes perfect sense that it would be helping you in that way. L-Theanine is another supplement you might want to investigate, but if the GABA is helping you, I wouldn't mess with it.

    It's great you've been able to find some help. I hope that it continues for you.
    redaxe and SOC like this.
  5. redaxe

    redaxe Senior Member

    Thankyou for your input, and yes I think you're right about the relapse-remitting. It's partly why it took me so long to realise something was really wrong - in the early phases of the condition some days I would feel fine, or a bit crap in the morning but better in the evening. Although I will say that definitely the symptoms seemed to gradually get worse & more numerous as time went on...
    But it certainly would seem a very strange coincidence for my symptoms to resolve so much when I was camping & then return when i was back. The other thing I forgot to mention was when I was away I still had problems with IBS which seems to be a universal symptom with CFS, so it seems likely that in my case a part of the illness went into temporary remission. I have actually been on other camping trips last year but only for about 2 nights at a time, and yes the same thing would happen - almost immediate improvement when being away & return of symptoms once I'm back in 'civilization'...
    The other funny thing with camping, I had little choice but to eat breads, canned, packaged foods & lots of sugary food (the sort of things that everyone says to avoid at all costs) yet I still felt fine & my persistent acne cleared up only to return when I got home! And indeed my alcohol intolerance seemed to disappear as well. I noticed with CFS that a patients level of alcohol tolerance seems to be a good indicator of your current status. If 1 beer pushes you into a hangover (if you used to be able to handle 5 beers) you likely have severe chemical intolerance and your general wellbeing is going to be poor, i.e. your body cannot seem to handle toxins & poisons of which alcohol is one.

    Sparrow: Yes I read a lot about B12 & apparently I did read somewhere that the acceptance level for B12 in Japan is much higher than many Western countries so I would have been considered deficient in Japan. Interestingly I find I don't get the immediate effects from B12 injections any more, I even had 2 done at once just recently to test this, so it seems to me that the underlying problem of B12 deficiency or nitric oxide overload has been dealt with.

    The other thing I suspect I have a methylation block somewhere that has reduced cellular glutathione. Now I haven't done a DNA test or any test to prove this but since I was a teenager and into my adult years I've suffered from horrible cystic acne which antibiotics, topical treatments did nothing for & even dietary changes were frustratingly only partially effective. I was treated with Accutane at the time.
    But since I've been on the supplement regime that improves methylation & glutathion I've noticed a massive decrease in inflammation in the affected areas & my neck is now completely clear of acne. Apparently acne is a sign of damaging inflammation so perhaps in my case with long term acne, problems with anxiety & IBS the writing has been on the wall for some time that I have too much inflammation....
  6. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Point 1, my thoughts when I read that were MCS or mold issues at home. Note.. chemicals can also be a trigger for dysautonomia (which is common in ME/CFS). .. Food intollerances could be playing a part too seeing you were eatting differently when away from home (I developed my MCS/chemical issues around the same time I developed food intollerences).

    2. Hydrox B12 injections certainly helped my brain.. I used to feel them wear off at the 4-5 day point so used to have two injections per week. Ive since discovered that was the wrong form of B12 for me (as I have MTHFR issues) so now on methyl B12 disolved under my tongue.

    You may want to be blood tested to make sure you havent to a MTHFR mutation (which is a common methylation issue) playing into your issues (this test was free on my health care card, fully paid for by medicare. Im in Australia).
    Last edited: Feb 26, 2014
  7. roonie


    I have only expeirienced one recovery early on in my illness..1993... but i continue to feel better when i leave and go to any other area. I often wonder if it has something to do with the endocrine system trying to adjust. I am one of those people that had to sleep in my back yard in order to try hold down my job. I had a chemical overexposure inside my home.(hardwood floor refinish chemical)..every time i would re-enter my home i would break out in a total head to toe massive red rash and feel myself slide downward while in the home and upward while away from the home...almost instantly. That happened way back in 1993.
    I suspect getting away from city pollution (chemicals) will give the immune system a holiday and a load may be removed and a weight off of the immune system.
  8. roonie


    35 long has that MTHFR test been available in you happen to know? MTHFR seems to be very new here in Canada. Maybe its me that just began to learn about MTHFR as of lately. For all i know a test is available
  9. redaxe

    redaxe Senior Member

    Thanks for your input - are you able to tell us who did your test, this is something I would really like to follow up on.
    Seeing as for much of my life I seem to have had to struggle against a low-moderate level of anxiety, episodes of depression, poor memory & adult acne it seems to me that there could be a partial methylation block causing some of these troubles.

    Roonie - That is my suspicion too.
    My doctor believes whatever virus I was exposed to (which was never found) damaged my immune system so it was producing inflammatory cytokines which was the cause of damaging inflammation. So I guess it is likely that industrial chemicals aggravate symptoms and cause further inflammation which must further damage the neuroendocrine system & mitochondria.
    If that theory is correct then logic follows that the immune system must be reprogrammed before a patient will see symptoms subside.
    This is what I find frustrating. Governments never stop complaining about rising health costs but what about policing the 10,000s of industrial chemicals we are now routinely exposed to. Don't believe that groups like the EPA & FDA protect us.... Remember lead, asbestos, DDT, dioxins, MSG, mercury fillings, vaccines containing mercury, the low fat diet fad that led to processed foods being packed full of sugar & artificial sweeteners......... The public is always exposed to these toxins for decades before governments will lift a finger to protect the public. And yet deoderants are still packed with Aluminium, we have non-stick pans that poison us with BPA, sugary and artificially coloured foods & drinks have never been cheaper to buy and most people lack the education to understand the harm they might be doing to themselves.

    But going back to sleeping outdoors maybe this could also be a reason... No joke here - a lot of doctors believe that because our modern lifestyles (being indoors & wearing rubber shoes) insulate us from the natural electrical current that the surface of the Earth gives off. Whether or not you believe it or think it has any relevance it is a curious theory. Supposedly people have claimed healing from sleeping on a conductive mattress that earths to the ground outside....

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