May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
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. brenda

    brenda Senior Member

    Carter yes it is the healing of the gut to look at first so that food molecules are not getting into the bloodstream and most intolerances are hidden and even if you give them up it takes time for the gut to heal. Catseye knows a lot about this. Her advice is excellent.

    One thing I have found out is that the body wants to heal at its own pace and it does no good to try to speed it up. And each supplement and protocol must be introduced carefully and when the time is right. And agreed the process is slow if it at the speed the body dictates though it can be speeded up.

    I think your analogy of debt is good and agree that cfs is a symptom of the whole organism crashing.
  2. Carter Burke

    Carter Burke Guest

    I wish I'd paid more attention to the gut aspect early on. Although my diet now is VERY limited - based around rice and chicken - but it seems to be what my body needs right now.

    I find it really odd, since charting my steps in Excell, how consistent this 1.45 extra steps a day recovery rate is.

    I had no idea it would be that slow - I was hoping I'd be able to add a few hundreds steps a week with all these supplements. But now. Wherther I'm fighting a virus, being sociable and going out loads, working, being lazy, dealing with other things, etc. THAT recovery rate is just what my body seems to have chosen. Huge fluctuations, day to day, but long term it just IS 1.45 steps/day. And I've never found any way to speed that up. But pushing certainly slows it down, or makes it go backwards. (Which is what us Type A personalities seem to insist on doing.)
  3. brenda

    brenda Senior Member

    Yes me too and eventually I had to ease into it slowly to avoid too much detox so I went from wheat free to gluten free and my test results from Metametrix this week shows no candida other bad bacteria which is quite amazing for my gut to be healing so quickly, and I atribute it to going very simply for 6 months cutting out most supplements so that my immune system got a chance to know where it was at.

    I have learned to go at the speed my body wants and avoid herxes which I think are un-necessary.
  4. Carter Burke

    Carter Burke Guest

    Wow, that sounds very promising. Great work!

    Totally agree. Most of my symptoms have eased off very gradually over these 2 years. So I've avoided herxes for the most part.

    The only slightly herx-like reactions I've had have been when adding Folapro from Rich VK's methylation protocol - which brought on mild flu-like symptoms. (So I eased into that very gradually, only taking it on alternate days.) And when I eventually decided to cut right down on lectins, I had a raised body temperature and some very mild viral-like symptoms for a while... Nothing that set me back at all, and I took it as a very positive sign.
  5. brenda

    brenda Senior Member

    Thanks. I am having a problem today with the q10 I added after my tests show I am deficient. I don't know if it is a slight herx and a good sign or that it is too soon for my body to use it. I no longer think that the answer is to automatically supplement if one is deficient - it depends whether the timing is right. As you say, it depend on whether we are set back or not.

    I agree with you on going in slowly and stopping lectins for me was a positive thing.
  6. Katie

    Katie Guest

    It's good to hear that you can overspend and not pay interest, I'd like to think that could be the case for all of us but alas, overspending will always have dire consequences. I appreciate how disciplined you've made your life and the gains you've made, though I think those gains vary person to person and your experience isn't one that can be universalised (unfortunately). Different folks, different strokes, even on a cellular level.


    I know this is a response meant for Knackered but there was a few points I wanted to make as an individual that does not have a lifestyle illness or illness beliefs. There is plenty of research evidence that CFS (I prefer ME, usually triggered by a viral onset or trauma) that CFS/ME is not purely down to mitochrondria or lifestyle. I really don't have the time to list them but in less than 30 posts time the library will become available to you and you can have a look around there. There are some of us experiencing a very different illness to yours but under the same umbrella, I would encourage you to keep sharing your experiences but acknowledge that not all people under with a CFS diagnosis are the same and that many cases are much more physiological than you give credit for. Reducing it down to 'thinking it is an illness' is not appropriate for many of us. I am different to you and I am also different to my husband (who also has ME and found different things help him). The situation regarding diagnosis is more complex than you imagine, Sarah Myhill is the only doctor I know who does mitochrondrial tests as standard, I would prefer to see them done routinely on the NHS if they are the easy biomarker suggested.

    Good luck in your recovery.
  7. Knackered

    Knackered Guest

    Hah? What do you find so funny about it?

    Why on earth are you on this forum?

    When you say you had Canadian criteria CFS, I don't think you did. Your "protocol" pretty much consists of GET and supplements.

    I also don't understand why you'd visit this forum explaining how you're 100% well again whilst telling people they don't really have a disease and it's their fault they're ill.
  8. CJB

    CJB Senior Member

    Your original post documenting your recovery has been a beacon for me since the day I read it. It's a remarkable validation of the futility of trying to exercise when you don't feel well (something my yoga teacher told me decades ago) and the value of what I call "power resting".

    I just don't think healthy people can deplete their energy reserves to the point of total disability. Something else is going on.

    I've always reported my CFS onset as sudden, because I got a nasty flu bug and couldn't get out of bed after that. But I can make a good case for something not being quite right since I nearly died of appendicitis (botched diagnosis -- only discovered during emergency surgery cuz they didn't know what else to do) and peritonitis and a four-week stay in the hospital. I had massive doses of antibiotics. I came home and I was allergic to my cats. I knew something major had happened to me.

    I recovered. But I've suffered from brief episodes of unexplainable fatigue after major stress events ever since. I just never made the connection until I started reading the posts here and heard different people's experiences. From the appendicitis attack until today, I've had long periods (years) of being able to cycle, hike, regular aeobics and lots and lots of walking. I've been healthy and fit. I've also had periods ranging from a week to three months of what I now believe were CFS events and lots of time where I just felt old and tired.

    I'm deee-lighted that you're doing so well. But PLEASE don't generalize and assume you have any answers at all. Be joyful, be happy, be grateful, and continue to share what works with us. Certainly you must know by now that there is an excellent chance that there is an underlying retro-viral infection for many of us. Dr Mikovits said XMRV is NOT benign. She showed the presence of the virus in over 99% of her CFS patients. Trying to decide you know how this all works for all of us doesn't make any sense at this particular point in time.
  9. xlynx

    xlynx Senior Member

    London, UK
    I am very appreciative to Clarkes post as it is very interesting to see how he has improved and I think hes graph he posted is wonderful, he is quite a detective. I think overcoming CFS is all about becoming one of these.

    It is strange how we nearly are all joined by PEM but can have such a variety of different symptoms other than that. I too have found it hard to except that my energy just burnt out when all my piers continued going at the same pace as me. I have had the mito function test and scored 20/100 and is nice to finally have a test show something.

    I definitely believe that CFS is an umbrella term and that not all of us are confined for the same reasons, but being a detective seems to be the only option. I think Mito Dysfunction fits the bill pretty well for me and probably for quite a number of us here but the difficult bit is finding out why and how to improve. I know I am struggling to work out a pattern to so many of my symptoms, even just finding food allergies is really difficult and takes alot of commitment, supplements also can be hard to find the balance with.

    It is really inspiring to see others achieve and I really like to see people come back when recovering to share there stories. Carters story has been a real interest as since reading this I really cut back my physical activity and stopped my continual attempts to burn my self out, sometimes you just need to see someone say it to confirm something you should have worked out already :).

    I hope Carter and Knackered play nice as stress is such a major factor in cfs :D;)
    Wayne likes this.
  10. Knackered

    Knackered Guest

    One more thing, how often do you hear that and who from?

    How are you in a situation where you hear that many times for you to become accustomed to it?
  11. Carter Burke

    Carter Burke Guest


    The mitochondrial aspect of the condition really explains the symptoms and the reason things like graded exercise can be unhelpful. It explains the nature of the condition and (seemingly) how best to approach recovery.

    In terms of cause and effect, I don't see CFS as a mitochondrial "illness" - necessarily. Mitochondria can be damaged or impaired by: nutritional deficiencies, things like hydrogen sulphide from gut problems, viral illness, toxins, allergies, acid/base problems from overbreathing, overwork, etc.

    It's easy to see how a combination of factors - say: a long-term nutritional deficiency and a bad viral illness; or: a food allergy, mercury fillings and a period of chronic stress - could tip a stressed system into a chronic state, where homeostatsis itself becomes impaired, and we begin to accumulate burdens -> vicious circles -> syndrome.

    So I don't doubt that things like XMRV, mycoplasma infections, mercury fillings, candida, chronic hyperventilation, etc. can be *central* to an individual's 'symptoms', by impacting mitochondria, but by their very nature, *syndromes* don't tend to have simple cause and effect explanations. Which is why when people treat a very specific aspect of the illness in isolation - such as taking antivirals - they can experience symptomatic relief, but you might be stuck on antivirals forever if it's metal toxicity, an allergy or nutritional issues which are impairing your immune system in the first place. (But poorly functioning mitochondria certainly fit into this vicious circle because you get more free radicals in the system when they slow down. But without the detox regimes and investigating allergies and gut problems, mitochondrial support alone might not be enough to actually pull you out.)

    Looking at why the mitochondria have gone wrong should explain what you need to do to get better. (And lifestyle is going to be central to this... I know there's a need to balance healing - which can be a long process - with living a life of some sort, but sometimes you really do need to go backwards in terms of what you do and expect from yourself in order to go forwards... And the mitochondrial supplements definitely give me a buffer, over-spending wise, which makes it easier to pace and function. I've also got a rescue drink I use when I do go over now: 1tsp D-Ribose, 1tsp Maca, 1tsp Vit C, 1/2tsp Malic Acid, 1tsp L-Glutamine. But the buffer gets better as you do. Which is why recovery seems somewhat exponential. SLOW, but exponential. And I *may* even be at a point where I can benefit from graded exercise now.)


    It's funny because your *battling* attitude is so common in Type A personalities who tend to get this condition. (Being able to accept someone else's opinion without agreeing with it is useful in general if you want to keep healthy. Over-reactivity and anxiety are common early stage symptoms though.)

    I've talked to people with CFS before - I've got family members and friends I've known since first school who've had it. I've been on forums before too... You can instantly tell people with good attitudes from people with less helpful attitudes. And optimism, acceptance, rationality are probably central to getting well... The people who are more concerned about arguing semantics all day have usually adopted helpless/futile attitudes towards their condition, and will wait around for some kind of magic bullet cure while not really seeking anything tangible which is likely to improve things on a day to day basis.

    I'm far from 100%. I'd say I'm about 30-40% well from 10-20% almost 2 years ago. What's significant is I've found an approach which makes recovery very consistent, so where I am now is of less significance than that. I don't believe there'll ever be a magic point where I've suddenly not got 'CFS' any more. Everyone has different limits. I know plenty of people who get so tired after work you'd think they had CFS... Medicine sees MANY conditions this way these days: that there's sliding scales we all fall on. Not just with CFS but with things like: autism, schizophrenia, depression, etc. They only become classifiable 'conditions' once symptoms impair everyday life to a certain point. Treatment is about control; there might be no definable 'disease' there to treat.

    I think it's worth sharing because my case was one of the more stubborn ones - I'd get breathless and my heart would beat at 180 just moving my arm in bed sometimes. I'd need to spend 10 minutes getting upright from bed to avoiding fainting. I spent years with a level of fatigue which made just breathing feel too exhausting to maintain. (Used to fantasize about being hooked up to a mechanical breathing device so I could rest my respiratory muscles.) I remember not being able to walk the length of my garden without seeing stars and feeling sick for hours... When I hear people talking about CFS and still being able to work part/time or go on 30 minute walks, I think that's a LONG way from the severity a lot of us wind up in.

    And also, without my daily attention to pacing and measuring activity, I could believe I'd spent a year on every protocol and supplement under the sun without making much improvement - and I might have given up. (I've shown recovery can be very slow - possibly too slow to notice. But with 700 days of records, and having a routine which tackles many aspects of the condition at once, I can know beyond doubt that I'm in recovery, and I can plan and structure my life around my current, and expected, energy levels.)

    I actually hate the terms 'CFS' and 'ME'. They sound too much like diseases.

    My symptoms have been severe, but I've always referred to it as 'burn out'. Now I just refer to it as: 'I get tired sometimes'. (Mental attitude exerts a HUGE influence over the nervous and immune systems. It's why placebo medicine and plenty of alternative works so well.)
    Wayne likes this.
  12. Carter Burke

    Carter Burke Guest


    I'm glad the thread's given you a little hope!

    What you describe sounds similar to my case. I had various issues from the age of about 12 (incidentally, around the time I had my first mercury fillings), but came down with the condition after coming down with a bad virus a decade later.

    I don't think there is any such illness as 'CFS', I think we can all get into low energy states various ways, and I think any case of CFS will involve various contributing factors which might crop up over many years prior to becoming chronically unwell... Some might be relatively simple, like low stomach acid leading to poor digestion and nutritional deficiencies, and some might be complex and difficult to get to the bottom of...

    But the body does a great job of repairing damage and correcting problems on its own, and it can function healthily with a fair amount of burdens -> e.g. all those people walking around perfectly healthily with XMRV, EBV, mycoplasma infections, etc. All those people with mouths full of mercury.

    If you can put your body into a healing state by taking as much strain off the system as possible - through nutritional approaches, pacing and detoxing - there's no reason you shouldn't be able to return to a pre-illness level of health... My brother was actually much healthier after getting over CFS than he had been before as it seemed he'd always had chronically low B12. This probably didn't cause him to get ill, but played a part... With booster shots, he was able to attain perfect health, although only after adopting a good attitude to pacing which he maintained for many years even when he was much better.

    The XMRV thing I've seen many times though. Finding a correlation is interesting, but it's a big leap to establish cause and effect from that alone.

    Sure, 95-99% of PWCs may have XMRV knocking around, but the vast majority of us do recover without ever touching an antiviral... Many recover from treating gut problems, mercury problems, allergies, etc. Many recover from rest and pacing alone. So I don't see XMRV as anything significant myself. Scientifically, it's only a correlation at present.
  13. Knackered

    Knackered Guest

    I was studying at university whilst working for an engineering company when I got this illness, it was sudden onset caused by a virus, yet you attributed your CFS to have being caused by letting ones self go. This is not the Canadian criteria CFS you claimed to have. Ad hominems don't make your points any more valid, I'll ignore them.

    Again, Ad hominem.

    For some people such as yourself GET, CBT and supplements work, they really do. Your condescending know it all attitude does not, neither does telling people they don't have a disease. Further more I resent the insinuation that people such as myself have adopted a helpless attitude towards our condition, I certainly haven't and after to speaking with a great number of people who frequent this forum, I'd very much doubt they would either and would find the accusation insulting. You sound very much like the people who push the notion that CFS is psychological in nature.

    For others, GET and CBT does not work because there is a clear biological role. I know you're really going to hate this when you read it, does CBT and GET help AIDS or MS patients?

    Based on what? You don't know me, you don't know my level of activity and you've no idea what I do, you persistently insult and attempt to belittle people who are ill on this forum, what's your problem? It isn't even a question of semantics, you're saying the disease doesn't exist and repeat it on almost every single post you make, I'm saying it does, that isn't semantics.

    I consider you to be rude, conceited and impolite, you appear annoyed that people on this forum are ill and criticize them for it and accuse me of being the unhelpful one here, I don't think you're a nice person.

    You're no expert and I put it to you that you're the obstinate person in this discussion, being unwilling to acknowledge there being a biological cause and insulting anyone who says there is. You're the insecure person, you're the one doing the petty name calling. When the biological cause is found, and it will, people like you are going to appear even more silly than you already do. I'm surprised no one else has challenged you on this, I suppose it's because people are sensitive around you because you're ill. If only you'd be able to show the same level of restraint.

    Wessley himself would be proud of your posts.

    That's it for now.

  14. Carter Burke

    Carter Burke Guest

    Hey, I totally respect your opinion. If I challenge it, it's only because my own belief is that it's unhelpful for recovery.

    But I'm not sure how much you've read of this thread because my approach is largely to do with supporting cell-level energy producing systems, detoxing and supporting the gut and immune system. I've never recommended CBT, per se. And the protocol I'm on does tend to put people into recovery.

    It's worth remembering though that no one's ever demonstrated that CFS is a 'disease'. You really do have to base such claims on scientific evidence as the body doesn't really have feedback systems which can tell you whether you've got a potentially medically classifiable disease or not. But you also have to remember *most* people get well eventually, and people who push themselves generally take longer to recover, or frequently relapse... If it were a 'disease', it's certainly not one the body isn't capable of dealing with on its own.
  15. Alexia

    Alexia Senior Member

    Thank you so much Carter for sharing your experiences. It's lovely to read your wise and positive words! I'm following a protocol similar to what you have been doing but I'm at an early stage so your experience gives me hope and reminds me not to expect too much and be careful with using the little energy I have. I've had ME for 16 years so I think it will take very long before I feel any improvement.
    Good luck and may your improvements be stronger and stronger.
  16. Suzy

    Suzy Guest

    Yes, thank you Carter for sharing your experiences. It's inspiring to read, especially how patient you have been in your treatment. I am just about to order severalof the Biolab/Acumen tests and have already purchased a sauna.
  17. Katie

    Katie Guest

    Modding interruption

    Quick moderation:

    Carter Burke, I do not find your comment which I have quote below as respectful towards Knackered (although you do not name him directly you have aimed this comment at him). Please refrain from these types of comments as they are condescending and perjorative.

    Knackered, please refrain also from comments such as "condescending know it all attitude" for similar reasons.

    You are both completely free to debate on both sides but lets leave out the personal stuff and stick to the issue.
  18. Robin

    Robin Guest

    Hi Carter!

    There's been some confusion about your use of the medical terms "syndrome" and "disease".

    The term syndrome is applied to a consistent collection of symptoms, as in chronic fatigue syndrome, in which the pathology is yet unknown. Often, even after the pathology and etiology of syndromes become known, the name sticks. Here are some well known syndromes: Fetal Alcohol Syndrome, Down Syndrome, Acquired Immune Deficiency Syndrome (AIDS).

    Here's the definition of syndrome.

    syndrome /syndrome/ (sindrĊm) a set of symptoms occurring together; the sum of signs of any morbid state; a symptom complex. See also entries under disease.

    As you can see, a syndome is not a lesser form of disease, it's simply a way to define certain diseases.

    I may be wrong but I think you mean to say that you believe CFS is a functional illness.
  19. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Patience and Wellness

    Hello Carter,

    Just wanted to mentioned that I've also noticed what you described above. This type of attitude (and others), like whether certain alternative protocols could possibly be viable, were very common on the ProHeatlh board.

    Another prevalent "problem" on the ProHealth board was there was usually some critical reactions to almost anybody that reported improvements. I remember comments like, "Don't you think it would in all the papers of the world if it was was proven that people could recover from CFS by just eating right? This sort of nonsense would sometimes go on ad nauseum.

    I want to thank you for posting your thoughts and experiences here. Your approach to regaining wellness is very similar to mine. Your experience in taking your own route in different areas than mine gives me (and I believe many others) some useful insights as I go forward.

    I also appreciate the positive tone and the feeling of realistic hope that I feel in your posts. I think it sets a good example for others to emulate (if they so choose) as they consider their own beliefs and attitudes and how adjusting them might help them on their own route to wellness.

    Finally, I commend you for some of the patience you shown. I've always thought patience to be a most important spiritual quality, and could serve all of us well if we can tune into it a little better.

    Best, Wayne
  20. willow

    willow Senior Member

    East Midlands
    Carter said
    'I think CFS is a symptom; not an illness.'

    Unfortuntely I can't process the whole thread so excuse me if I'm way off track, but I think this could be said about a number of conditions. E.g. with MS there may be evidence of brain lesions, demylination etc, but in my view these are symptoms, researchers and medics should be asking what is the underllying cause of these. A few get success with treating various infections, but I think other stressors, toxic, nutritional, physical or psych could all play a role. Instead conventional treatments do not look at this but merely seek to control the symptoms of demylination etc- how short sighted. From my persepective ditto rheumatoid arthritis, Lupus and a whole host of other conditions.

    And yes in the case of MS, RA, Parkinsons etc there are often pathologies that are used for diagnosis, but to me that misses the point, and is why commonly practised medicine is not that successful. And perhsps there are key pathologies that could be used to diagnose ME, but so far we have not been clever enough or determined enough to identify these.... Though if this happened I can't see much use for it apart from allowing ME to be a bonefide medical diagnosis (A relief, but surely the key issue is recovery)

    OK I'm spent...

See more popular forum discussions.

Share This Page