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

[Wayne]

OK I'm spent...
Willow

Aww, Willow, please take care of yourself. Thanks for sharing your thoughts.

I just wanted to briefly mention that I've never looked at whether CFS was a symptom or a disease. I just have never thought in those terms, and I guess I don't feel a need to start.

My own philosophy is to try to track down anything that might be a factor in my health, and address it the best I can. And be patient with the process.

Best, Wayne

 

[willow]

Thanks Wayne, Usually I'm very sensible and well paced but occasionally the desire for sharing and dialogue gets the better of me

BTW your philosophy is something I identify with. Very sensible.

Willow

 

[xchocoholic]

Interesting thread. I'll have to come back and read the whole thing some time ... I've spent too much time online already today.

but, I have to agree with those who say that CFS is just a syndrome. By definition CFS is JUST a group of symptoms with fatigue being the most common. And if you look at those symptoms individually, they may or may not be related.

As in, so far I know that my brain fog can be from either food intolerances, candida, hypoglycemia, hunger, too much sugar at one time, or the need for DHA or EPA. My nuero symptoms have all been from gluten intolerance. My fatigue and PEM appear to have been linked to inadequate aminos despite a healthy diet.

I have yet to tie any of my symptoms to any of the viruses I have ..

Small rant ... why do we have a medical system set up that just gives names to symptoms, or worse yet, a group of symptoms without looking for causes ?!?! No one ever looked at my nutritional deficiencies or food allergies or intolerances.

I was using a motorized cart everytime I went out of the house because I couldn't walk any distance ... And that was just from gluten ! How ridiculous is this ? Especially considering how many of us have these food itolerances and / or nutritional deficiencies ...

I hope our CFS doctors are learning about leaky gut since this appears to be what we are dealing with. If not, we're going to be right where we are now forever !! There simply isn't any other way to heal the immune system ...

 

[kurt]

The real cause of what the govt. has named 'CFS' is unknown. I suggest we not waste our energy personalizing the debate about unknowns. Everyone has the right to their opinion, and nobody has all the answers here, at least not that I have met (if you know that person please introduce me .

My personal view having been a researcher is that one single observation, no matter how compelling, does not make a trend. And no conclusion about the 'real' cause of the disease state known as CFS can be reached until there is a clear trend in the research.

In other words, one person's improvement with this or that protocol often leads to someone making generalizations, but you just can not generalize from one case. Not Mike Dessin, Carter Burke, or anyone else who has had improvements can tell someone with ME/CFS how they will recover. Doctors and researchers know this because they see so many sick people, they know that every case is a little unique and even when you label someone with a disease that is no guarantee that any given treatment will work for them. Individuals with CFS lack this perspective of diversity, in fact other than online interactions or a few friends or family, most of us are pretty isolated. If there ever was a group that probably was NOT capable of making any generalizations, it is people with ME/CFS.

Anyway, regardless of what you want to call 'CFS,' regardless of whether it is technically a disease, a disease state, a syndrome, or even a spectrum of metabolic disorders, people with the condition can be very, very sick. I think we all should have great respect for each other, because we all KNOW first-hand how much suffering there is from CFS, most of us are fighting low-energy levels just to participate on this forum.

For the record, my personal view is that CFS is part of a spectrum disorder that includes MS. Explaining that would take more time than I have right now, but I believe the evidence and recent endogenous retroviral research into both CFS and MS support this view (and the common retrovirus in CFS and MS is not XMRV, but HERV K18 and the viral trigger HHV6 - and HERV K is an MuLV type retrovirus).

So, we each have our views and experience. I think we can all learn from what Mike, Carter and others have learned about THEIR case of ME/CFS. Some things they are doing might help a lot of PWC. But we just need to realize that one success story is not a trend, and not a scientific basis for making any claims or generalizations about the cause and treatment of ME/CFS.

 

[Carter Burke]

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/ (sindrōm) 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.

Hey,

Yeah, functional illness is a good term. Probably much clearer. I'd use the third definition of 'syndrome' there: a symptom complex.

I think of CFS in much the same way hyperventilation syndrome can be acutely disabling (it can mimic heart and lung problems, cause fits, agoraphobia, severe fatigue, etc.), yet it's not really a disease. It's sort of a self-perpetuating cycle, where stress drives overbreathing which drives further stress... So you tackle hyperventilation syndrome (and many cases of asthma) by lifting the body out of the cycle: retraining breathing habits; correcting nutritional problems; stress relief. And it's generally a slow and steady process, but you need to understand how the cycle establishes and maintains itself - otherwise progress can be difficult.

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

Hey Wayne,

Hugely appreciated! Thanks

And yeah. If I appear a little insensitive it's only because I've seen exactly what you describe many times - perhaps even more commonly on non-health-related boards, where people with the condition aren't even looking for treatment... Another common one is when people (and not slyly referring to Knackered here) will be skeptical that you really had CFS/ME in the first place, and assume, if you've cracked it and made progress, that your case was probably just being a bit tired or overworked. Theirs must be much worse.

It's not like I got better overnight. I probably took a year on this protocol just to stabilise things. The progress has mostly been made in this second year... I just don't think people would notice such slow progress unless they found a way to quantify it.

I think if there's one thing CFS has taught me, it's patience! I got ill as one of the most reactive, impatient Type A personalities you could imagine. I think if I continue to make this progress, I'll honestly be able to say, in a few years from now, that CFS has done me far more good than harm.

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...
Willow

Thanks willow!

I'm strongly inclined to agree with you on all points. I think we all have a tendency to think in very binary terms about illness/disease.

It seems - from looking at the Sinatra protocol which inspired the protocol I'm on to some extent - that even heart failure and cardiomyopathy may,in some cases, be quite straight-forward syndromes which the body can be lifted out of, at least to some degree.

 

[willow]

Hi xchocoholic

Agree with your small, diddy wee rant
'Small rant ... why do we have a medical system set up that just gives names to symptoms, or worse yet, a group of symptoms without looking for causes ?!?!'


My husband's atypical Rheumatoid Arthristis has been in remission since I persuaded him to try a gut bug combo 3-4 years ago. I know someone completely recovered from Spondilosis, in desperation and at the point of giving up work he did something similar to my DH. (Spondilosis is a degenerative non-inflammatory arthritis, http://en.wikipedia.org/wiki/Spondylosis) An ME friend was bedbound for10 years until she stopped gluten and within a couple of days she felt the improvements which grew and built, a local doctor successfully treated MS with abx and other anti-pathogen treatments etc etc.

Amazing when you think of how many chronically ill people there are in the world that could be leading a healthier life if only someone looked at the causes.

OTOH symptom management requires less brain power from the medics and I imagine that developing drugs to control symptoms is far easier and more financially rewarding than finding and treating the cause of the symptoms.

Willow

 

[brenda]

Yes precisely willow, I find it more helpful to just think of myself as sick and doing a basic healing protocol to get things moving, which they are - my leaky gut looks like it is well on the way to being healed, and these basic things do not cost much - I have not been using many supplements - only vitB complex and dig enzymes. I don't even think it is necesary to look at the cause or find it - our bodies will get into healing mode if we stop the things that prevent it - and everyone knows what they are doing that is not good for them. We can all follow the basic steps - diet, green vegetable juices, fresh whole and organic food, giving up all activities that take energy away from healing even if we are left with the bare minimum - cook and eat. There is plenty of advice about these steps. Once we are in healing mode then we can get extra help for the following steps in things like liver cleansing etc but hopefully we will have healed enough for the body's own intelligence to kick in and guide us by intuition.

There is a stage we must go through though, where we are still in shock and want validation and having the extent of our suffering recognised and for others to know that we are incurable by medical standards. There are many on boards like this who are still in the greiving process and unfortunately they are very touchy and defensive if anyone suggests that they can heal themselves - they are just not ready to hear this yet - it seems like it diminishes their suffering and makes it their fault if they are still ill and echoes what they have heard from various sources.

But the fact of the matter is, that all illnesses can be healed by allowing the body to do just that and many people with all kinds of things like cancer are healing themselves. It does take a change in attitude and a relearning what we always took for granted - that we are entitled to health and if we are ill we just go to the doctors and let them sort it out. This attitude is not helpful however if one is born with faulty genes or have been environmentally damaged and they see others who can abuse themselves and not suffer so they get stuck in self pity and anger neither of which will help in healing. Life is not fair - we have to accept it and get on with it.

 

[willow]

Yes Brenda life is unfair and there are lots of things we can do and little cost to create the conditions for health and it's our responsibility to do that for ourselves... as far as possible.I don't think it's helpful for anyone to blame themselves, instead focus on what's possible, any small changes (or large) that would take pressure of our bodies and provide spare energy and other resources for healing.

Food, fresh air, limiting toxic exposures, meditation and appropriate movement are my most successful and reliable medicines.... And the safest.

I guess I'm relatively lucky that my worst symptoms are cerebral and MCS, so in the position where I'm able to cook for myself, can grow some organic veggies, order online and have other clean, safe food delivered to me. My home is as safe as aI can make it right now and in an ok area. Unlike some I've rarely been bedbound, never fed by a tube or had serious sleep issues etc which would shut down many options that I have for self help.

I've been ill for most of my life and highly disciplined about looking after myself as best i can, even as a child, yet these only take me so far. Also when I've had a serious exacerbation off the top of my head I don't think I have ever fully recovered the previous level of health. So for me something is missing- years, almost a lifetime of clean, fresh food, pacing etc has not been enough and will not be enough for me to have a reasonable quality of life. But I'm sure there's a key and I will keep searching whilst maintaining healthy eating, pacing etc.... well those will be life long for me.

So in some cases I think there is a need to look at some of the underlying conditions and to treat those too. 10 months ago a dental situation lead me to a non-standard form of homeopathy which I'd been doing surprisingly well with. Having a wobble at the moment, but definite improvements in my most debilitating cerebral symptoms.

As for seeing health as a right, I'm unsure if I've ever experienced good health, or ever will but I know if I lived at 50% of my potential health, I would have a ball.

Good Luck on your journey

 

[brenda]

Hi willow

Thanks. I have been ill most of my life too and it has taken all of this time until I really started to heal and I think that the reason was that I had a lot of emotional stuff to deal with first and I think that the body puts that as priority. If I had had more help it would have happened sooner but better late than never!

Yes there are underlining conditions to sort out too I agree and the mouth is definitely an area to consider.

 

[Suzy]

Carter,
Is there information on Sara Myhills website regarding what temperature to use in the sauna ? I found information on how often/how long but that is it.

Suzy

 

[xlynx]

Hi Suzy,

My doctor works with Myhills protocols and he suggested to take things very slow at first. Starting at around 32 degrees celsius and then working up to higher if you can handle it.

Thanks,
Jerry

 

[Carter Burke]

Hey Suzy,

Yeah, 32 degrees sounds like a good starting point.

I did feel quite wiped out by it the first few times I used it. Particularly the next day... Not so much a fatigued feeling, more a slightly sedated feeling. Possibly because it burns up a bit of energy; possibly more to do with mobilizing toxins.

It's probably quite important to have your mineral levels - particularly magnesium - at a reasonable level before you go too full-on with sauna therapy. I've not seen so much mention of this, but you do lose minerals as well as toxins in sweat... I spent a while using magnesium solution (transdermally) before I started using the sauna too regularly. I *think* I can gauge my magnesium levels by how I react to transdermal magnesium - when I started using it I'd get a noticeable stimulant effect; when I don't react to it, I assume my levels are reasonable... Having magnesium up also makes it easier to sweat. (My body's certainly got better at sweating as I've recovered. Could be one of the central blocks of some people's CFS - low magnesium -> poor sweating -> accumulating toxins. Sauna therapy could be a good way of moving things along there.)

Some people with magnesium deficiency could push themselves into a worse deficiency if they weren't replacing minerals when they sweat, and sometimes people seem to need injections or transdermal mg to get levels up initially.

I use a loofah when I step in the shower after the sauna. I read it's what they do when they're trying to decontaminate people working in mercury mines - plus you probably get a lymphatic massage.

I slowly worked my way up from 2 saunas a week to alternate days or daily... Some regimes recommend 2 or 3 short sessions a day for 60 days or so. I've kind of played that one by ear. I think most important is to make sure you're replacing minerals and electrolytes and not wear yourself out.

Good luck with it!

 

[Suzy]

Hi there,
You started at 32 degrees. What did you work up to ?

Thanks for the tip about the magnesium. I haven't been doing any seriuos sauning until I get my magnesium measured through the CFS profile test. I also just sent in a sample for the pyroluria test for zinc as I hear that is also removed via sweat. I hope ferritin isn't removed too much as I am low in that.

Suzy

 

[Hysterical Woman]

Hi there,
You started at 32 degrees. What did you work up to ?

Thanks for the tip about the magnesium. I haven't been doing any seriuos sauning until I get my magnesium measured through the CFS profile test. I also just sent in a sample for the pyroluria test for zinc as I hear that is also removed via sweat. I hope ferritin isn't removed too much as I am low in that.

Suzy

Hi Suzy,

Please keep in mind that if they are using blood to measure your magnesium level, it is not very accurate (only 1% of the body's magnesium is in the blood).

Please share test results with us when you get them if you are comfortable with that.

Take care,

HW

 

[Carter Burke]

Hi there,
You started at 32 degrees. What did you work up to ?

Thanks for the tip about the magnesium. I haven't been doing any seriuos sauning until I get my magnesium measured through the CFS profile test. I also just sent in a sample for the pyroluria test for zinc as I hear that is also removed via sweat. I hope ferritin isn't removed too much as I am low in that.

Suzy

Hey,

Personally, I just put mine on full temperature and sat in there as it warmed up, as I tend to be quite good with heat and thought it would probably take quite a bit to make me sweat. I think it peaks around 54 degrees.

I figured I'd work up longer times, rather than higher temperatures. But probably better to go easy though - I did have a few lightheaded moments early on.

Yeah, zinc's another important one. This Myhill's Magic Minerals product is very useful, I find. It's really cheap - I'm assuming only available to her patients in the UK though(?). All the minerals you need in the correct balance. Just taking a scoop in a drink after a sauna should keep you safe... I think there are similar powered mineral products sold in sports and health stores online. I know in detoxing mercury and aluminium, it's the turnover of minerals which is important. e.g. Things like iodine can help push toxic metals out - taking up their position.

I think my CFS profile test confirmed I was low in magnesium, but I couldn't really tell how low, and as Hysterical says, it's difficult to get a clear picture from blood tests.

Also can be difficult to get levels up initially with oral supplements, so I think the transdermal approach is best myself. Good piece on Myhill's site http://drmyhill.co.uk/wiki/Magnesium_-_treating_a_deficiency

I've not seen other people warn of this too heavily. Myhill says you need to take minerals after a sauna, but I thought I'd better work on getting levels up for a bit first. And I understand lipids from things like fish oils are important to improve cell integrity so you can hold on to magnesium.

Hope that helps a bit!

 

[xlynx]

Hi Carter,

How many spoonfulls of the myhill minerals are you taking and how are you getting past the taste?

Thanks, J

 

[Carter Burke]

Hi Carter,

How many spoonfulls of the myhill minerals are you taking and how are you getting past the taste?

Thanks, J

Have you got one of those little blue spoons it comes with? I don't know how big they are - I'm guessing half-teaspoon? Or maybe a level teaspoon. I take about 4 or 5 a day. (I think the dose is a scoop per 2 stone of body weight? But I take a little less now.)

Just one of those little blue scoops in a large glass of water at a time. I'll always have a glass of water around anyway, so I've just got in the habit of adding the minerals to it. Sometimes lower concentrations, like a half scoop in a glass. (On occasion I've had the sensation it's sort of relaxed the muscles at the back of my throat slightly - which could be a magnesium thing - but I was probably using it at too high a concentration back then. I also used to get a few small spots, probably from the iodine - which I didn't like. But that doesn't happen any more so I'm assuming it's detoxed something. Iodine helps the body get rid of bromide, flouride, mercury, etc.)

It's funny, I used to find it tasted horrible, but now it's probably one of my favourite things to drink... I think I've heard something about the way we taste minerals being related to deficiencies in some way...

 

[kadir]

Hi Susan,
Please supply name and address or contact email / phone number of the doctor you are consulting. I have been suffering from cfs a like symptoms for more than 25 years and now seems to be going only downhill in doing day to day things. Your help will be very much appreciated.
Thanks
Kadir

 

[cigana]

Dear Carter Burke,

Thanks for this great post. Can I ask if you had your amalgam fillings (or root canals) removed as part of your treatment for mercury toxicity?

Thanks,

Cig

 

[Marg]

Thanks so much for posting this. I hope I have learned the lesson of not pushing, this reminded me! I know I pushed myself back into illness after 8 years so please be careful and it sounds like you are.

The Folopro, Actifolate and Phosphatidyl Serine Complex are all available by Metagenics at www.iherb.com for those in the US. Rich VanK prefers trhe actified kind.

I have never heard of Maca powder, what is it?