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

andreamarie

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I skimmed the thread and will take the time to read it carefully.
But I have one simple question: how did you include activities of daily living, e.g. showering, making meals, phone calls etc. in your activity level?
Also, how did you deal with doctor's appts. and necessary outings? They really do me in. I've cut out many things by doing things online.
I need a wife (I'm a woman)
I am being sent to a mito specialist who is really interested in CFS patients. my doc said some people improve with him, some don't.
 

Daffodil

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maybe following a strict, non-inflammatory diet early on in the illness can lead to significant improvement, since the inflammation in this disease seems to be coming from the microbiome.

it might be a little more complicated with later-stage illness.
 

triffid113

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Does anyone know if PQQ helps? It helps you grow new mitochondria (idk how fast, nor how well they function with existing problems like inflammation). I read a sports magazine which said the point of not exercising at the same intensity each day is to enable generating more mitochondria on less intensity days and that made me wonder if we could get the benefits of working out by popping a pill??!) I have never tried these seriously because they are expensive and I already take so many pills. But - how cool if a pill could replace exercising-?! Just putting it out there for anyone who can afford to experiment.
 

jann1033

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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.
I'm happy this seems to be helping you. However I am curious as to how long you have been feeling better. Wondering as after 10 yrs of CFS I began pacing , making sure I took care of other health problems etc. After 12 yrs of that thought I was OK to take a very part time job (maybe by then 50% of pre CFS energy with things like tremors that never really left) 3 + years ago) but eventually it took its toll. I'm not in relapse but serious flare, back to where I was 15 yes ago.. Personally I wonder if CFS ever truly goes away or just is more manageable sometimes. I hope you don't have a similar crash. I never got to the point of any but the most minor (IE a short walk with lots of rest stops) exercise and always had post ex malaise.
 

Wayne

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Carter, can you PM me please?
Hi Sirshocking,

It looks like Carter is no longer an active member on this forum. Unfortunately, this seems to happen all too often when someone posts that they've significantly improved or recovered. Fortunately, he left this most interesting thread behind before departing.