1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

My complete protocol - recovering well from bad 7 years+ CFS

Discussion in 'General Treatment' started by Carter Burke, Dec 16, 2009.

  1. Carter Burke

    Carter Burke Guest

    Hey!

    I'm not 100% sure on how it works - I think respiratory alkalosis results in tissue acidosis, but yeah, I'd have thought if your blood was on the acid side and you can hold your breath for that long, you're probably fine on the breathing front.

    I've not had that checked myself. I had checked urine ph, which can give you a clue as to whether you're hyperventilating. But mainly me discovering hyperventilation syndrome was stumbling across the symptoms and finding relief in the treatment. Which is sort of how I approach everything with CFS. I'll try anything, so long as it's safe, and see if it helps.
  2. Wayne

    Wayne Senior Member

    Messages:
    2,190
    Likes:
    1,261
    Ashland, Oregon
    Indium - A to B Calm Freeze Dried Calcium Magnesium

    Hi Carter, Hi All,

    I'm continuing to enjoy this thread. So much good information--so much to consider.

    Re: Magnesium

    I just wanted to briefly mention that the best source of magnesium for me has been a "freeze-dried" calcium magnesium powder distributed by a company called "A to B Calm". It seems to get into my muscles within minutes of taking it, and I've found it helpful for all sorts of muscle aches and pains. It also is helpful for me for relaxing and getting improved sleep.

    Re: Indium

    I also just recently became aware of a trace mineral called indium which is supposed to increase the absorption of all other minerals (reportedly as much as 50%). I was happy to discover that a favorite supplement of mine called "Cell Food" has trace amounts of indium. Here's a little blurb on indium I ran across recently:

    Thanks everybody for all your contributions.

    Wayne
  3. Carter Burke

    Carter Burke Guest

    Thanks Wayne! Hope there's at least a few ideas in here people might not have tried. I certainly find everything I'm doing in my current protocol plays an important part. (With pacing clearly being the most important. In fact, I think of every other treatment and supplement I use as ways to help my pacing.)

    Just on the Indium though, I think the jury's still out on it. I'm always cautious of things like that until there's some clear studies.

    Apparently scientific opinion is still that there's no proven use for it in the body, and in fact it's quite a potent toxin - toxic to heart, lung and brain tissue... Obviously there's times when 'establishment' thinking hasn't proven right (lots), but I think in the case of Indium there really isn't enough solid information there yet - at least that isn't trying to sell you the stuff.
  4. froufox

    froufox Senior Member

    Messages:
    396
    Likes:
    65
    Hi Carter

    Thanks for sharing your story, I agree with others its very interesting and well done on taking such a systematic approach to getting well, its very encouraging to hear that it has paid off for you.

    When I read your posts it reminded me of a friend of mine with ME who has taken a very similar approach and is very very strict with how he uses his energy or "scientific energy control" as he describes it. Like you he came to the realisation that his body would not repair and have the energy to fight infections etc unless he conserved his energy by enforced rest and he uses charts/graphs, checking his temperature and other ways to carefully monitor his progress. This approach seems to have worked well for him.

    It makes perfect sense to me on one level although I wonder if it also depends on how complicated your health problems are and on a practical level if you are able to get that rest depending on your life responsibilities/circumstances. I have found it quite difficult to do for various reasons not least because I am quite scatterbrained! Anyway his approach is explained on Dr Myhill's site here for anyone who is interested..

    http://www.drmyhill.co.uk/article.cfm?id=9

    Wishing you all the best on your journey of recovery.
    Wayne likes this.
  5. Terri

    Terri Guest

  6. Carter Burke

    Carter Burke Guest

    A chronic, recurring virus was one of my major problems for a long time.

    Any stress - from some engagement I needed to keep to a normal cold virus - would typically bring it back on, with symptoms like orthostatic tachycardia, temperatures, muscle aches, often huge drops in fitness and a quite distinctive red flushing in the feet.

    I think the key is - as with most things - to rest and support the immune system as much as possible so you can get it under control. A lot of healthy people have these subclinical infections knocking around too, and eventually they'll probably be knocked out of the system altogether.

    I've not had those symptoms for about a year now. I'm sure good nutrition and things like vitamin C at high doses help swing things in your favour. I had phases on Olive Leaf extract and Oregano Oil, which may have helped. Probiotics may have helped - (I've had a few short stints on VSL#3).

    Vitamin D3, and ideally getting some good sunlight whenever possible, undoubtedly helps the immune system stay on top of these things.

    For me, cutting out Lectins (tomatoes and lentils/beans - food intolerances in general) seemed to improve my immune system immediately.

    FIR saunas, for detoxing mercury/metals and inducing an artificial temperature, almost certainly helped things there.

    I think possibly the biggest turning point was getting on Folapro (only a quarter of a tablet/day) with Rich Van K's methylation protocol. I mentioned the Folapro used to bring on those very viral symptoms, briefly. I have a feeling easing into that protocol was a major factor in knocking the virus out.


    I'm not even sure how much use anti-virals and things are if your immune system's still run down. I think they only get a percentage kill, so might only provide temporary relief/later recurrences.
  7. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    5
    London, UK
    Hi Carter,

    Have been reviewing this thread again as there were some great things in here. I have just been through a terrible crash of about 6 weeks as I was getting too over confident on walking (about 1 mile a day) and after 7 days straight I painfully regretted all of it and spiraled down hill badly for 4 weeks.

    I am going to try the sedentary life with minimal walking and just accept that there is no point in trying to keep any level of physical activity up for the moment.

    You have covered your physical pacing very well, just interested in your mental pacing. Did you put restrictions on tv and laptop usage and try meditation etc? Did you ever notice that too much tv for instance affected you.

    I personally seem to have major crashes associated with physical exertion but I have not noticed it with Mental so much but maybe I have just not tested it enough.

    Thanks Jerry
  8. fds66

    fds66 Senior Member

    Messages:
    225
    Likes:
    2
    I have acquired a pedometer and I've been wearing it all week. I intend to get some information about how much activity I'm doing now and go from there. The pedometer is a method for measuring physical activity but of course I need to take into account mental activity as well which is harder to measure. Also emotional activity which depletes my energy very quickly. Will see if it is useful information to have.
  9. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    3
    East Coast
    Hi fds,

    Good luck with wearing the pedometer. Hopefully it will get you some information about the physical activity.

    Take care,

    Maxine
  10. Carter Burke

    Carter Burke Guest

    Hey!

    I did exactly same some years back. I was feeling generally better, so started a walking protocol... I've got a path in my back garden, so I invented this walking system where I'd walk 1 step forward; 1 step back; 2 steps forward; 2 back; etc. so when I was starting out I'd do a '10' - which would be going from 1 forward, 1 back up to 10 forward, 10 back.

    I took to this really well. I worked up to 33 (the length of my garden), then I'd go back and do them in reverse: 33, 32, 31, etc. until I was up to about a mile a day.

    I was feeling better and better as I was doing this; even finding myself running from time to time. At the time, I was convinced getting the graded exercise protocol right was a cure for CFS.

    But actually the 1 mile mark was where I crashed. I did it for a few days then before I knew it I was getting fatigued throat/respiratory muscles from talking on the phone. Picked up some virus (or retriggered some virus) and was totally wiped out for months... I think it took a year before I could climb stairs again without getting out of breath.

    Which makes sense if you 'get' the mitochondrial thing... There's a cell-level limit to how much energy you can exert. All you do with graded exercise is find that limit, because, as my own charts seem to show, repairing at the cell-level is VERY slow. About a 0.15% improvement a day if you're talking ALL the right supplements and pacing well (for me).

    I spent years with graded exercise. I'd have ups and downs. On my ups I'd try walking daily; walking alternate days; walking only when I felt like walking; aerobics; yoga; etc. 5 years of that and I made no long-term progress at all. I think my Type A personality was still pushing me further and further into illness.

    I *think* L-Glutamine might be a part of the reason we hit a wall with exercise. It's an abundant amino acid; low in CFS; used by muscles and immune system; levels plummet after exertion... Some people think it's implicated in overtraining syndrome (which I've always thought had a lot in common with CFS) because you exercise -> Glutamine drops -> immune system weakens -> pick up a virus -> further stress, etc. (Studies with 10g+ L-Glutamine/day seem to improve symptoms and activity levels.)


    Mental exertion's not such a problem. It's something I notice more with driving.

    When I was totally cutting back on activity to try and stabilise my condition (once I'd started taking all the Myhill supplements) I'd take more mental relaxation time. I'd often use hypnosis CDs throughout the day. Physical exertion's what's brought on crashes though. Although one of the most rewarding things about making slow, consistent improvements is that all these downsides - like crashing, like hitting a wall, etc. - ease up... So I can push a little outside my boundaries now and go further when I have to, and I also don't tend to pay for it so much later.


    e.g. this time last year, just spending an hour or two with a friend at home would be quite exhausting. On NYE just gone I did 4-5 hours in a busy bar and had a few drinks, and didn't really have any symptoms that night or the following days.

    Another e.g.: I've always needed a few hours after I wake up to completely rest and relax, otherwise I'd have low blood pressure, headaches, no energy, etc. Now I can get up and go straight to a dentists appointment, and my body can plough through it a bit without me getting tired and without any post-exertional malaise. But obviously I do these things sparingly, because (imo imo) there is no such 'disease' or condition as CFS - therefore you never *have* it or don't have it - it's just a general state of mitochondrial efficiency...

    There'll be thousands of contributary factors: XMRV, EBV, anxiety, hyperventilation, vitamin deficiencies, mineral deficiencies, mercury, food allergies, etc. but CFS is just a state we find ourselves in and getting out of that state and staying out of it probably never stops being about pacing.

    I honestly wonder if the whole condition isn't just rooted in perception of effort. Because other people who push themselves like I used to KNOW when they're tired and their bodies make them take it easy... As such, they never push themselves into mitochondrial failure or accumulated body burdens... I've never had that. I could do day after day of overwork and too much socialising, and my body would never really let me know I was overdoing it.

    (I noticed this in the gym first. An ex of mine collapses in a heap after doing a few pressups, but if I encourage her, she can always knock another few out... To me, that seems like laziness, because when I exercise like that I'll just go straight to my limit and won't be able to do any more - no 'drama'. And this got me thinking about a hardwired perception of effort which is fundamentally different in us.)

    Lot of rambling there! Incidentally, I've just posted 3 days straight of around 3,500 steps/day after a few weeks of slump. 650 days ago I peaked at 2,100-ish and spend 2 weeks paying for it. You've GOT to be the tortoise, not the hare.

    I think the key with pacing with a pedometer is to explore your limits a bit. Chart everything in a spreadsheet or graph paper. But ultimately FIND the window of exertion which keeps your symptoms to an absolute minimum. My first year on supplements and wearing a pedometer was undoubtedly my laziest, most laid back year since getting ill... I had to go right back before my body would start nudging me forward. I see any symptoms as a sign you're doing too much. The good thing with charting it, though, is that slumps like fighting viruses and things aren't actually setbacks if you adjust your activity levels to suit... You get better and your activity trends go back up almost as if the slump hadn't happened. i.e. I think you still improve while you're knocked back as long as you pay attention to pacing. My chart's still full or ups and downs, but the trend's consistent now. It never used to be.
  11. Carter Burke

    Carter Burke Guest

    PS - I've also noticed, about 700 days into this pacing and supplements protocol, my natural *manly* body odor's come back.

    Not that it's ever been too noticeable (I hope!) but I've noticed I've not really had that natural armpit aroma throughout the condition. I'm also sweating much more in bed and exertion brings on sweat much easier.

    I know a lot of people wouldn't be celebrating such things, but I think it's probably upped my detoxing, and possibly also signals some kind of hormonal improvement. It's gone kind of hand in hand with this recent improvement. (I haven't made any significant changes to the protocol recently. It might just be another milestone in recovery. I've still been using the FIR sauna regularly. I added Maca powder to my protocol maybe a month or two back, and that *could* be a part of the improvement. It's claimed to rebalance hormone levels, although I've not seen any scientific evidence... It does seem to give me an energy boost, and the *other* claims people make about it certainly seem true from my experience, although it seems to take a few weeks at least. I'll be continuing it anyway.)
  12. Knackered

    Knackered Guest

    Would recovery from this protocol be consistent with the theory of XMRV being the biological cause?
  13. Carter Burke

    Carter Burke Guest

    Yeah, in principle.

    I mean any chronic, low-grade viral infection really requires strengthening the body/immune system to the point where you can stave it off and eventually knock it out of the system (or at least keep it low-grade enough that it's unlikely to cause any problems).

    I certainly had a persistent viral infection at the root of a lot of my more acute symptoms: orthostatic tachycardia, flushed feet, temperatures, etc. And I also had a recurrent gum infection and chronic cough. But all of these have got better on the protocol. The viral symptoms don't seem to come along any more - even with stress - although it took a year or so to knock them out, (possibly helped considerably by Rich Van K's methylation protocol), and I just noticed the other day my cough hasn't made its usual appearance.

    Of course I might be wrong, but I think the evidence for XMRV being a *cause* is too weak. We've had the same thing with EBV and mycoplasma infections, i.e.: a high proportion of sufferers having the antibodies. But as with them, thousands of healthy people have these viruses knocking around too.

    The tests never establish cause and effect; just a correlation. (Although we'd all - certainly drugs companies - love to find a 'magic bullet' cure.)

    If you've got a weakened immune system, you're simply going to pick up a shopping list of viral and bacterial infections anyway and never quite knock them out. That's why *I think* PWCs tend to test positive for so many of them... They're definitely contributing factors, but that's the vicious circle of syndromes like this.

    It may be that a particular anti-viral staves off a chronic infection long enough for you to get into recovery properly, but I wouldn't hold your breath for something like that. I don't envisage it being the safest or most reliable approach... From studies I've seen with antivirals and antibiotics, there's usually a percentage improvement - which is what you'd expect from removing a body burden or two - but without supporting the body through: rest, pacing, nutrition, detoxing, etc. I think it's likely you'll just pick up the same infections again, and probably lapse back into the lifestyle which made you ill in the first place.

    (Just my opinion btw.)
  14. Knackered

    Knackered Guest

    Did you have Canadian criteria CFS?

    Edit, one more thing, do you think CFS is just caused by a weakened immune system?
  15. brenda

    brenda Senior Member

    Messages:
    1,243
    Likes:
    598
    UK
    Hey Carter

    Congratulations on your healing!

    I agree with much you say, for example that it is not a good idea to sit and wait for an anti-viral or other 'pill'. Life is too short and I believe that anyone can get into healing mode so long as they start to believe that the human body is built to heal itself and if you take away the things that are stopping it, it will heal.

    For me with Lyme it has been vital to take out gluten, dairy and lectins on top of a pure organic diet but also to reach a point of acceptance of my illness and stop fighting against it, letting the anger go and that happened when I was sure that I could heal myself.

    The other thing that is important imo is to dedicate onself to the healing process and to put all of ones' mental energy into it. And thirdly it is patience as it takes a long time for it to happen properly. It is easy to boost things with various supplements but that is a false healing. The body needs to be actually doing it itself.

    I reckon it takes 3-5 years and maybe more but the alternative is to rot and maybe the medics will not have an answer for you before it is too late.

    I am watching your progress with interest.

    Oh and my womanly foot odours are back - great news!

    I have recently added maca and sprouted rice protein powder which is fantastic.

    Brenda
  16. Carter Burke

    Carter Burke Guest

    Hey, oh yeah. I certainly fulfilled the Canadian criteria. I actually had one better than that and got the mitochondrial profile blood test (which is probably the only reliable blood test for CFS) and scored 30/100, which was about one step off being bed bound most the day.

    I'd call mine quite a stubborn/persistant case. My progress has been slow but consistent. I'd expect a lot of people would progress quicker than me.

    I think CFS is a symptom; not an illness.

    Everyone's body is in a delicate balance between stresses/burdens and the ability to heal and maintain homeostasis.

    I think it's just the same as getting into debt with money. Some of us tick over okay; some of us build wealth; and some of us get into 100s of thousands of debt, and day to day, the differences in our lifestyles and approaches can be very subtle. It's not just stupid people who get into big debt. It can seem almost like it's all circumstances, but in actual fact there's subtle habits which dictate these things on the whole.

    I don't think there is a single cause. I think a weakened immune system is a part of the usual picture. A cause and an effect... I think the way to get into recovery is support the whole system and lift yourself out gently.
  17. Carter Burke

    Carter Burke Guest

    Hah, oh that's great to hear! And thanks for your words :)

    I think 3-5 years sounds right. Although as you get better, obviously your life gradually gets back to normal. My brother had a very bad case, and I think it took him about 3 years to get better, but in that time he went from bed bound to living in the city doing a degree. So it was a journey, rather than a wait. And obviously he learnt to listen to his body and rest completely as soon as symptoms started to return. But now he's 100%. He's actually healthier than he ever was prior to developing CFS. So it is more than possible if you learn the lessons. (For him, high strength B12 injections seemed to be the turning point.)

    I've found diet really important. I was reading a website the other day where a doctor had his patients on a very restricted diet - basically just chicken and rice - for a number of months before slowly reintroducing things. And from the sound of it, a lot of his patients had been long-term with CFS prior to that... I think food allergies should probably be the first place we all look. And then, as you say, you have to accept that healing at the cell-level can be a slow, careful process.
  18. Katie

    Katie Guest



    Hey Carter, I read your debt analogy and thought I would share my similar one, this is how I explain PEM and relapses to people. I've adapted it slightly today as I thought of an element ME folk would understand (Bills).

    My energy account is at the Bank of ME. Everyday I put money into that account if I sleep or rest but how much depend on the quality of sleep. As I spend energy the amount of money goes down, if I overspend my energy allowance, the Bank of ME charges me interest, and we're talking punitive interest rates with no regulator. So I rest and I sleep and I hope to get back in the black, but the next day I'm charged interest too, I use energy and I'm in the red again. ME charges more interest and I'm getting sicker. Sometimes I can control all the factors but there's always bills to pay in the form of viruses, colds and infections, you don't have any choice in paying bills, you just have to, of course ME is charging intrest in this time. At the moment, ME is charging interest at will because I spent a load of money at university and did bloomin' well if you ask me, and my sleep can barely keep up. I hope to be back in the black once again (which for me means balancing out and maintaining the minimum I need to do in life) and I do have some say in that, but I also have to ride out the interest payments and the damage already done. If I stay within my limits I hope to improve, but my energy account has been at the Bank of ME since I was eleven years old, it'll always be there, but hopefully one day, I'll be obscenely rich!

    I think we have a significant role to play in helping outselves but there are many other elements to deal with that are beyond our control. This is my long term experience with ME.
  19. Knackered

    Knackered Guest

    I don't agree and I find this quite offensive, there are many ill people on this forum, people who are much worse than me, and to tell them they're no different from people who allow themselves to spiral in to debt is disgusting and is an outright insult to every single person with this illness.

    It is an illness, it isn't a symptom.
  20. Carter Burke

    Carter Burke Guest

    ABSOLUTELY how I'd describe it. (And pretty much how my specialist sees it too.)

    I was in the same rut -> more outgoings than incomings, and increasing interest. Which is why I could never make long-term gains, only temporary ones.

    But I see every supplement I take now as a little extra income - maybe like a little jam business on the side and the profits going into a savings account or mutual fund or something.

    The mitochondrial supplements seem a bit like a debt management scheme, because they seem to give you a little more breathing space. I can over-spend a little now and not pay any extra interest... Maybe that alone is enough to turn it. And then there's things like detoxing with the FIR sauna, which lifts a little of the root cause of certain debts.

    But yeah, when you think about how to get in or out of debt, a tiny overspend, regularly, can spell disaster, and a tiny cut in outgoings might just be enough to stabilise things... It's certainly how people seem to get better. They seem to have less and less "ME" until they're basically functioning normally. And then the so-called "relapse" is simply them pushing themselves back into it. (Not realising that it's not an "illness" you've overcome, it's just that your body has certain boundaries you need to get used to.)

    Hah, yeah I'm used to that response.

    Thinking of CFS as a disease or illness is simply not backed up by any evidence - or by the experiences of all the people who recover. It's properly termed a "syndrome". (You can't really classify a condition based on how helpless it makes you feel.)

    But don't think getting into an energy crisis isn't a serious problem. In Japan, people frequently drop dead from overwork. People do running marathons or playing football. A car engine can fuse itself together from being overrun.

    If anything, CFS is a protective system. If we didn't get the fatigue and didn't rest so much, we'd simply push our mitochondria into complete failure.

    As far as I'm concerned there's no mystery in CFS at all. The mitochondrial angle makes perfect sense and the blood test, which thousands of people use now, accurately predicts PWC's ability levels... Case solved. And by taking this approach I've now started making long-term progress with no "relapses" and such a consistent rate of recovery over almost 2 years, I'd be very surprised to see it change much. And I've no doubt once I reach a certain level I'll be effectively back to where I was before I was "ill". (But even then, you'll still need to pay attention to pacing, otherwise you'll just go back to the lifestyle which brought you down. Which so many people seem to do... Thinking of it as an "illness" makes sick people feel helpless, and means people who have recovered don't accept responsibility for their condition and push themselves back into it...)

See more popular forum discussions.

Share This Page