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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

    Having battled - unsuccessfully - with full-blown CFS for about 5 years, I hooked up with a good specialist and have managed to pull myself largely out of fatigue and symptoms, along with maybe tripling my daily activity, in just under 2 years.

    At this point a lot of people will be thinking "Ah, you were probably just chronically tired..." My CFS was a pretty bad case. I was housebound for most of it - also acutely agoraphobic - and much of the time just lying down breathing was physically exhausting and I couldn't walk the length of my garden without passing out. (So... Bad case!)

    It came on after many years of pushing, living fairly unhealthy, developing asthma and coming down with a bad virus.

    Why couldn't I get myself well?

    My instinctive approach was to push. Obviously I was flat out on my back most of the time, so it's not like I was dragging myself to the shops or work, but whenever I felt well, I'd try to start gentle graded exercise routines. (Walking usually. I'd start at 100 steps on alternate days. Add a few every week. I got quite far with this sometimes, but never made any consistent, long-term improvement. Muscle fatigue in the legs/knees would often limit me, and beyond a certain point I'd just come down with viral symptoms again.)


    Step one

    The first thing that really helped - and the beginning of me getting well - was being put in touch with Dr Myhill (UK), a GP and CFS specialist. I ordered their mitochondrial profile test - which measures how well the cells in the body manufacture and recycle energy. (Possibly the best test for CFS.)

    The results were much worse than I'd anticipated. I was rated about 20/100 - meaning one step off being bed-bound. Producing about 20% the energy of a normal person.

    This was a huge breakthrough because it convinced me that my problem wasn't just lack of fitness. I always thought I could tease my body back into health by getting the graded exercise right. I actually realised my problem was cell-level, and pushing just made me worse -> increased free radicals, damaged cells further. The test also showed I had various vitamin and mineral deficiencies - magnesium among them.


    Step Two

    Complete rest.

    I realised there was no point pushing at all when my cells were failing and my muscles were basically myopathic. So I started on a proper supplements protocol - to support these energy producing systems - and spent the first few months on the sofa, only maintaining minimal activity. (Aim to be a healthy sedentary person before you start craving 8 miles hikes.)

    Whenever you're not doing anything, you might as well lay down - more restorative, takes the strain off the adrenals and heart, etc.

    (Another very important part of this was learning the Buteyko technique - reduced breathing - as I was a chronic hyperventilator prior to this. It can be very hard to spot - I was also a slow breather... I suspect CFS ppl get problems with this because cells go slow and don't produce enough CO2, so we HAVE to breathe less to avoid pseudo-asthma symptoms or body chemistry imbalances. e.g. leaking magnesium and zinc.)


    The supplements I began on weren't cheap (but then can you put a price on living - just about - indefinitely with a condition like this?):

    Biocare Multivitamins (quality vitamin supplement with good doses of B vitamins - made my urine bright yellow for a few days)
    Myhill's Magic Minerals (powered minerals at correct doses - I think there may be similar products sold on health/fitness websites)
    Vitamin D3 1000ug/day (she recommends 2000ug)
    VegEPA Omega 3 and Evening Primrose 4x/day
    Vitamin C 2g+/day

    - Mitochonrdial support:
    Niacinamide 500mg
    D-Ribose think I was on about 5g/day
    CoQ10 (started on 300mg/day - after 6 months of so I gradually reduced to about 100mg/day)
    Acetyl-L-Carnitine 2g/day

    Some were taken in the morning, others throughout the day. At first I got a euphoric feeling taking these. Possibly due to chronically low B vitamins. (I'd been taking a basic Centrum multivit for ages, but you seem to need MUCH higher doses of B vitamins and higher mineral doses in general to get levels up if they're low.)


    Step Three

    Pacing and monitoring activity

    I decided to buy a step counter (pedometer) off amazon and start monitoring how much I was walking around the house each day. I used an Excel spreadsheet to graph my steps/day and plot a trend line - although graph paper would be another option.

    I wasn't going to do any graded exercise. My aim at this point was to rest COMPLETELY. I'd know I was on the right tracks when, between getting my vitamin/mineral levels up and resting enough, my symptoms subsided.

    But over time I noticed a subtle trend of increased activity. (Slow, in fact over the first year the trend was around 1-1.2 additional steps each day... Yeah... SLOW! I'd never have noticed it if it weren't graphed. But bear in mind I was starting around 700 steps/day. Although I'd been much higher than that before I decided to start resting properly.)


    I also added (slowly) Rich Van K's Methylation protocol:

    Hydroxo B-12 (taken nasally) 1mg/day
    Folapro 1/4 tablet/day
    Folinic Acid 100mg/day
    Phospho-Serine (can't recall dose - I don't take this now! More on that later)

    At first I couldn't take the Folapro without coming down with viral symptoms. So I'd take either B12 or Folapro on alternate days, and have periods off the Folapro. It seemed to kick start some kind of immune response. I eventually eased into the protocol though.


    Step Four

    Sauna detox

    One of the best ways to offload mercury and aluminum - also speeds the metabolism up. I wouldn't start this until you've got mineral levels up a bit though.

    I did these whenever I felt able. I bought a cheap FIR sauna off ebay and would shower straight after sweating for a few minutes. Obviously used to wipe me out a bit at first - I was VERY cautious about wiping myself out at this point as it's basically going backwards.

    I also started using magnesium through skin absorption. I bought some magnesium oil initially - later Myhill supplied me with Mg Chloride which I'd mix with water myself... Got a BIG stimulant effect off this at first, so I'd use little more than a drop every so often. Gradually built up.


    Fixing the diet

    I now cut out all common allergens: wheat, dairy, eggs, obviously I was already off sugar. I went onto a sort of paleolithic diet: high protein, frequent meals, carbs (mostly rice, rice cakes or rice pasta) later in the day.


    Step Five

    I was making good progress by now. Slow but very consistent anyway (unlike the ups and downs of earlier years). So I decided to start trying out some sports supplements to address muscle recovery problems.

    I added:

    L-Glutamine (often deficient in CFS) 10-15g/day
    BCAAs (Branch Chain Amino Acids - usually deficient in CFS) 10g/day
    Malic Acid 1-2g/day

    Instant boost in my daily activity. It shot up quickly from 1.2 extra steps/day to 1.5. (Might not sound like much, but over the scheme of things this was like going up a gear.)

    I think the L-Glutamine is a very useful supplement for CFS. It helps repair tissue, aids protein synthesis, repairs leaky gut and provides fantastic energy and support for the immune system.

    Took about 3 months for my muscle recovery problems to start improving.


    Step Six

    Another breakthrough

    I thought my diet was tight, but I'd recently suspected tomatoes and lentils may be an additional food allergy.

    I'd never noticed symptoms off them, but I'd eaten tomatoes most days since becoming ill. It was almost a food addiction.

    So I looked into LECTIN intolerances.

    I cut out high lectin foods: beans, tomatoes, lentils, etc. and immediately noticed my body temperature had gone up. (Kicking myself - it was obviously my immune system kicking in. I should've done a proper exclusion diet as a first step, as Myhill had recommended, I just never suspected them. Maybe I didn't want to!)



    Today:

    It's not a very time-consuming protocol. I wake up, eat a few rice cakes and take my sports supplements. Then rest for a few hours (horizontally), then eat a light breakfast and take most of my supplements.

    I'll aim to get 12 hours straight of good quality rest a day even if I don't sleep enough.

    I can now live a relatively normal life. I can drive long distances, go out and socialise, anxiety/agoraphobia improved gradually on its own (body chemistry rebalancing), my body odor changed from ill to normal eventually.

    I can work and have just started weight training. One big difference is that any weights in the past would've lead to a mini-relapse after a short while; now my body seems to thrive off it and repair and recover properly. (Although I'm still monitoring steps and symptoms each day in my spreadsheet so I can see early if I'm overdoing it.)


    Note: Don't rush back into an active lifestyle. I feel 100x better than I did 2 years ago, but I'm probably only half-way better at most. CFS people like to push themselves back into illness (and then blame hidden pathogens!). I'm planning at least another 2-3 years of careful pacing, even if I feel like doing much more; and the supplements are a long-term thing for me.

    I had a bad case, with mercury problems and chronic viral infections. If you're committed, you CAN pull yourself out of CFS gradually and consistently by rebuilding the body and letting it recover - (after all, we ALL live with a certain load of toxins and pathogens). But all or nothing or magic bullet approaches are less likely to lead to consistent improvements.


    PS - I've also added Maca powder recently. Supposed to help balance hormone levels. Only been taking it a week or so but I get a nice lift from it. Might be worth trying. My only hesitation is it's quite high in L-Argenine, which Herpes family viruses, like EBV possibly, like! (Which is why a low Argenine, high Lysine diets and Lysine supplements can help a lot of people.) So some people might get worsening viral symptoms with this, but I think I've got my viral load down enough. Will monitor results while taking it.
     
  2. George

    George Guest

    Thanks for posting

    This is a nice protocol. Thanks for posting.
     
  3. Marylib

    Marylib Senior Member

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    If only....

    If only I could get that much rest, maybe it would help me alot too. If I ever get my personal assistant :) or a sister-wife, it could work! Would be nice...

    Glad you are feeling better Carter.
     
  4. Esther12

    Esther12 Senior Member

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    I know someone else who did really well with the same thing.
     
  5. _Kim_

    _Kim_ Guest

    Hi Carter Burke

    What a valuable contribution you've made to this forum by listing - in a very readable format - your healing protocol. Some of your wisdom will surely help others recover too. Thanks.
     
    Wayne likes this.
  6. girlinthesnow

    girlinthesnow Senior Member

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    Many thanks for the account of your treatment

    I've looked at Dr Myhill's website in the past and decided against ordering tests but your experience has changed my mind. Will save up and order in the New Year.

    Hope things continue to go well for you.
     
  7. Spartan936

    Spartan936 Guest

    Fantastic post, Carter. A very level-headed approach. Everyone I've heard from who's ever recovered did something very close to this. Lots of pacing, supplements, and a good diet. A month ago I started my own version of it.

    A couple questions though... How much do you think the dietary changes helped? And what do you eat on a daily basis? I have always been very leery of radical diet changes.

    My predicament is that I'm already underweight, and I'm not sure I can deal with the limited food choices very well. Sometimes I think that the paleolithic diet recommendations are simply aimed at the people with CFS who are overweight.

    I'll be checking out Dr. Myhill's website again.
     
    Wayne likes this.
  8. _Kim_

    _Kim_ Guest

    Hi Spartan936

    There has been a recent discussion on diet changes that might help you learn more: what you need to do and why

    Welcome to the forums.
     
  9. fds66

    fds66 Senior Member

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    Thanks Carter, that was a really clear description that's helped me understand how you have made progress.
     
  10. xlynx

    xlynx Senior Member

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    Hi Carter,

    Nice post. I like what you did with the pedometer. I think you have done a great job buy increasing in such small increments. I have to improve my patients level some more!

    I think the hardest thing for me and probably where the biggest rewards will come from is pacing. Its just after a week of lying in bed as soon as I feel better all I want to do is go out for an hour or so and remember normality.
    Then I am ill again (I am an idiot I know :D)

    You definitely inspired me to put more effort into pacing.

    Really interested in looking into these can you tell me when you buy them from:
    Hydroxo B-12 (taken nasally) 1mg/day
    Folapro 1/4 tablet/day
    Folinic Acid 100mg/day

    Phospho-Serine (what is this)

    Thanks
     
  11. Carter Burke

    Carter Burke Guest

    Hey, thanks for all kind responses!

    Much appreciated. :)

    xlynx: I think pacing is probably the single most important thing to get right. Once I got my head around the fact it was a cell-level problem, I realised my approach would have to be about letting my body increase activity at its own pace. (If I'd have realised it would only be 1.2-1.5 steps a day, I'd have probably given up there and then! But then again, it's increased in a lot of other aspects too, such as driving further, being able to be in company longer, recovering much faster. And recovery CERTAINLY seem exponential - i.e. you pull yourself out of the worst and you start recovering faster and faster. I think there's stages. The first year was very slow though.)

    There's a stage in recovery Myhill talks about where you *can* actually start pushing yourself, and I think at about 2,000 steps/day (sub-symptomal) now, I can push a little bit and get fitter, rather than push and get tired/fatigued.

    Seems to be a bit of a turning point. When exercise actually starts doing you good! (Although I'm still sticking to forms of exercise I can fit inside a 5 minute window at the moment. Although from periods when I have exercised and periods when I haven't, my rate of recovery's remained very consistent.)


    I actually get the Hydroxo-B12 straight from Myhill's office. VERY cheap compared to what shops charge (plus I couldn't find Hydroxo-B12 anywhere in the UK anyway!). Folinic Acid also from Myhill's office, although I think it's easily available. (There was a report which showed it improved CFS patients.)

    Folapro I buy online (in the UK) from a shop called Mandimart (I think?) - it should come up on Google when you search it.

    Rich Van K's methylation protocol anyway. I couldn't really tell how much it's helped tbh - because I've been doing so many things! The idea is it gets you detoxing properly, so your body can start dealing with mercury and long-standing infections. Can still take a year or two to make significant headway but some people apparently recover quite quickly on his protocol. (Some people get side-effects too - probably mostly related to detoxing too fast. Be careful and read up on it. I read of one woman getting better very quickly and relapsing much worse, but then she was cycling and living a normal within months, so you've got to pace even if you do feel much better because the cell mitochondria take a long time to repair properly.)

    Phosphatidyl serine I used to get from Biocare (VERY expensive). Then I started getting it from Myprotein.co.uk (very affordable).

    It's lipids. Which helps cell walls repair. Also blunts the stress/cortisol response a bit. Can help if you overreact to things or get acute stress/anxiety from relatively minor incidents.

    I actually cut it out when I went on a low Lectin diet, because it's all lectins. (I kind of think cutting Lectins out may have been the biggest key to swinging things around. I never realised what a difference food intolerances could make, but I think if you've got an intolerance, it can keep the immune system impaired and compound all the rest of your problems.)

    If there's one hard lesson I've had to learn from all of this, it's PATIENCE!


    Hey!

    I'm the same. Very low bodyfat, naturally. It's difficult for me to put weight on.

    I can't tell how much cutting out: wheat, dairy, etc. helped. (Although I used to get crippling stomach aches before cutting out dairy.) I kind of did them to be on the safe side.

    Cutting out high lectin foods (tomatoes, beans, lentils) seems to have been the single biggest breakthrough for me recently.

    Who'd believe tomatoes could be such a big problem? I immediately noticed I was hotter in bed - almost like a temperature. Then I went through about 2 months of bleak depression, during which I suddenly noticed I could drive much further and not get that wiped out feeling.

    (e.g. This time last year, driving 20 minutes down the road left me exhausted with pins and needles in my feet - needing at least an hour's rest... Now I can drive 1 and a half hours or so, get home and not even need to rest... I'm trying not to *find* my limits, but the change there has been huge.)


    My diet is a bit limited!

    Mostly based around chicken (for protein), rice (for carbs) and extra virgin olive oil (for fat).

    You can do various Chinese/Thai/Jamaican/etc. dishes. I avoid things like soy sauce.

    Thai Green curry may be very good. Garlic and onions are great vegetables, and coconut milk MAY even be a significant part of why I'm doing so much better right now. (It's anti-viral and fungal, I believe, and speeds up the metabolism.)


    I use rice cakes as snacks. Would consider nuts too, but maybe not too many as they can be high in copper, and high copper/low zinc can be a problem in CFS.


    I find Branch Chain Amino Acids and Glutamine help maintain weight a bit. I think possibly by keeping muscle cells hydrated - which improves recovery and protein synthesis I believe. I put on around half a stone, without any noticeable increase in fat, from adding them to the protocol.

    But basically, having a cold chicken, rice cakes and olive oil/salad dressing around means you can get the essentials.


    I think the paleo diet does something very useful at some level. I used to be a carb-addict before I became ill - both addicted to soft drinks and carbs in pasta/bread/cerial... I had BAD hypoglycemia early on in the CFS.

    That's got better as I've maintained better blood sugar levels by eating more protein and fat, and spreading my carbs out a bit more. I'm probably less prone to hypoglycemia now than I ever was prior to CFS. Taken a while though. Some think hypoglycemia's related to insulin resistance, which you get from an overreliance on carbs in your diet.


    Diet seems to be MUCH more important (at least for me) than I ever gave it credit. Just suspect those innocent little things you eat every day too! Wish I had done a really strict exclusion diet right from day one, although coming off lectins gave me 2 months of horrible depression and viral symptoms, so you'd have to know it was good sign and not a bad one!
     
  12. Spartan936

    Spartan936 Guest

    Thanks Carter, Kim. Lots of good info.

    I've decided that I'm going to do a modified elimination diet, and see what the effects are in the long term. I suspect lectins, milk, wheat, and sugar are all bothering me. We'll see. I'll report back.
     
  13. Carter Burke

    Carter Burke Guest

    I'd recommend doing away with sugar anyway. Empty calories, makes hypoglycemia worse, fuel for things like candida.

    If you've got time, it might just be worth trying a few weeks without something you suspect and seeing how you do. Some food allergies/intolerances make you feel worse for a few weeks, some for months or more. (I'm obviously big on this lectin thing, because it's something I never suspected and it seems to have kickstarted a next-level of healing. You probably NEED to have your pacing really good to heal in the first place though.)

    It's why it's so useful for me plotting my activity levels. I can usually see how cutting something from my diet or adding a supplement is actually affecting me. When, day to day, you can be so up and down it can be difficult to tell.
     
  14. Frickly

    Frickly Senior Member

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    Hi Carter

    I Have to start out by saying you have a great name as my youngest son is named Carter. I take many of the supplements on your protocol and feel it has helped me as well. I think it is important to address CFS on all fronts. It is important to address all bacteria and/or viral issues while supporting your immune system through supplementation and diet. This is what has helped me but I admit...It took me six years to find out what those bacteria and virus' are. Also, as stated in other posts, it can be difficult to start any supplementation as our bodies react strongly. Mine certainly did...

    Thanks for posting...I love hearing about what has helped others.

    Welcome!:)
     
    Wayne likes this.
  15. Carter Burke

    Carter Burke Guest

    Hi, thanks a lot :)

    Yeah, actually my reluctance to get too into supplements early on was that I was afraid I'd get well on them, and then get ill again as soon as I came off. (I didn't want to be reliant on a suitcase full of pills to live a normal life - or get huge rebounds if I ever ran out.)

    I've kind of learned to see CFS as a series of interlinked vicious circles though, and pulling yourself slowly out - with supplements, pacing, detox, diet, etc. - should allow your body to heal enough to take over on its own once you decide to start gradually relaxing the regime.

    I was lucky I've not reacted badly to many supplements. I think one of the most difficult things to measure is whether getting worse is a good sign or a bad sign. e.g. An allergy to a supplement probably wouldn't help you out much, but a supplement or dietary change which brings on worsening symptoms could be a sign that your body's suddenly working properly again. (Always best to go slowly though.)

    If I'd taken something which brought on the temperatures, raised pulse and low feelings cutting out high lectin foods did, I'd be VERY suspicious whether it was doing much good for me.
     
  16. Frickly

    Frickly Senior Member

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    Carter

    There may be some truth to this statement. I have mycoplasmal bacteria and EBV to deal with. I am unsure if the supplements would have done much for me if I were not taking antibiotics and anti virals for my infections. Without addressing these infections I would very likley go back down hill if I stopped them. I agree that it is a vicious cycle. Did my bacteria deplete my glutathione? Did my glutathione depletion leave me suseptable to bacteria and virous'? I don't know, but my head hurts.:)

    I think the most difficult part of this disease when trying to find a treatment is finding a doctor who is willing and knowledgable enough to test for all of these common infections found in CFS patients. They can not be ignored. I beleive my glutathione/ATP injections for many months have also helped to break this cycle as this supports the immune system and acts as a natural antiviral. Anyways.....glad you found this place and look forward to reading your posts.
     
  17. Wayne

    Wayne Senior Member

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    Complete Rest - Atlas Profilax

    Hi Carter,

    Thanks much for your great post. A lot of great information in one place. I can easily relate to most of what you posted, but one piece that stood out for me was the part about complete rest.

    I'm seriously considering going go the coast and camping out for an extended period of time right by the Pacific Ocean. I sometimes wonder if I've already done the necessary things to help me get well, but I've just not given my body a chance to achieve some type of homeostasis that can only be achieved by complete rest.

    The one thing I've done that was especially significant was a specialized atlas correction called Atlas Profilax. It provided me many benefits which I've posted extensively about, but I want to at least mention that it helped signficantly with my ability to relax and rest. Sleep improvement is one of the most commonly mentioned benefits by people who have had this treatment.

    Thanks again for you detailed post. BTW, I find the tone of your writing to have a nice calming effect. :)

    Wayne
     
  18. ramakentesh

    ramakentesh Senior Member

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    Although it is also possible that you improve spontaneously??
     
  19. Carter Burke

    Carter Burke Guest

    Frickly:

    Yeah, Mycoplasma and EBV were(/are) part of my CFS.

    I was very lucky to find a specialist who treats the condition even more seriously than I do, and her opinion is generally more that antibiotics only give you a 'percentage kill', and that building the immune system up with good nutrition, rest, detoxing, etc. is the best long-term solution to get on top of things again.

    Because of course, just as with XMRV, there's a lot of healthy people out there with all of these subclinical infections floating around too - at least antibodies which show they have been. I think if there's a chicken and egg in CFS, it's that having a weakened immune system makes it much more likely you're accumulate chronic low-grade infections - body burdens really. (Which is one of these vicious circles.)

    Which is why I don't call CFS a 'disease' at all. I know a lot of people think I'm making light of it by saying that, but I compare it more to a cashflow problem -> being in major debt with the body, and then having more outgoings, interest on debts, etc. piling up. And just as a lot of smart people can't manage money, sometimes what you need is a complete lifestyle and perspective change to get you out of the danger zone and towards a point where you can start saving/getting better.

    Thanks again :)


    Wayne:

    Thanks! Yeah, the complete rest part was the turning point for me. I figured there was no point sitting upright when I could be lying down; no point walking too much if I was only going to get stiff/achey legs... Just so long as I got an adequate level of activity - enough to keep blood volume up and avoid the dangers of being *too* sedentary.

    I had to rest until my symptoms subsided quite a bit, and days became more consistent (less up and down), then wait for my body to start telling me it wanted to expend more energy. (Which perhaps happened sooner with all of these energy-supporting supplements.)

    Most of the best recoveries I know of have come about through nothing more than rest, just very early on. I think the longer we've pushed ourselves, the more damage there is to undo - more debts and loans we've accumulated.

    Sounds like a great plan! I find the coast's very healing.


    ramakentesh:

    I think spontaneous recovery would depend on the cause of the CFS.

    CFS can be thought of as a 'symptom' - rather than a condition - so if you chronic fatigue's caused by a hormone imbalance, amino acid deficiency, vitamin deficiency, food allergy, psychological or neurochemical problem, then if you can fix that, it's possible you'll get to full health again very quickly.

    I think the modern clarification of CFS - as a symptoms of mitochondrial dysfunction (that is: the energy producing parts of the cells going slow and being damaged; which could be a result of: hormone, vitamin, mineral, allergy, etc. problems) - then a spontaneous recovery would be less likely, because the cells tend to repair quite slowly.


    I'm somewhat skeptical of things like Lighting Process. I think if a treatment did make you feel instantly better, there'd be a risk you'd raise your activity levels and push yourself into cellular failure. (The fatigue part's actually keeping you well.)
     
  20. susan

    susan Senior Member

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    Carter,
    I like your ideas of the cause of CFS as a syndrome. I think something similar. I had a car accident that led me to FM mths later but I was not bad with it for many yrs and then in a stressful job I just one day sort of collapsed into chronic fatigue.

    So I kind of like the Gupta theory of the body getting stressed, the amaygdala becoming unbalanced, anxiety develops sending stress responses to the body with CNS in overdrive, partially shutting down the parasymapthetic system which sets in motion the detoxing, calmness and balance.

    Since the detox does not work, virues and bacteia have been able to invade a weakened body state, compromising the immune system.... metals build up and other nasties.

    I have just had the amino profile test and have 27 abnormalities out of 40.....virtually no sparks coming from the Krebs cycle. I am starting with supps to compliment this result but was surprised I had enough B12 but low Folic acid.

    I have had years of total bed rest but it still does not change anything. Taken yards of supps.....trying again a new approach...treating gut isssues more directly.
     
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