Any cures for CFS/ME/IBS - esp. AFTER ALL ELSE HAS FAILED?!
ship
Hi
I have been stalked by fatique (CFS/ME) for about 20 years.
I have tried almost everything you can think of!
I would love to hear from anyone else who has tried LOTS OF THINGS, and
who has finally found something that has ACTUALLY WORKED!
More to my background
Symptoms
- Fatique - mainly mental fatique. Physically I am fairly fit -I
bicycle about 30+30 minutes per day. I am 45, male, 6ft and about 12
stone. I *look* reasonably healthy. I very seldom get any passing
diseases like 'flu. But I spend much of my time feeling exhausted, with
poor memory. I have an irritable bowel (fowl smelling and frequently
somewhat soft)
I suspect candida and have tried (and am recently retrying again)
various anti-fungal herbs etc.
The strange thing is that in the medium term absolutely *nothing* seems
to make any difference whatso ever way.
Over the years I have tried homeopathy (about 5 different
practitioners), and all sorts of "weird" stuff. In desperation I have
even tried counselling and psychotherapy.
- Medics cant find ANYTHING clinically wrong with me.
An alt med practitioner diagnosed reactive hypoglycemia - and certainly
eating slow-burn carbohydrates has significantly helped me. He also
gave me various thyroid support things but that didnt seem to make ANY
difference.
And still I feel fatigue.
I also have fungus in the feet, groin and sometimes on my chest and
back that keeps recurring. I got my GP to give me some anti fungal
pills. I also have medium sized "floaters" in my eyes (a sign of
Candida, no?). And have Central Serous Retinopathy. But although it has
reduced the fungal discolouring in my toenails even after 3 months I
still feel FATIGUED.
About 15 years ago I thought it was all down to food sensitivities and
experimented extensively on exclusion diets. However this didnt help. I
gave up wheat, dairy, alchol, caffeine, etc for many months. In the
short run it certainly made a slight difference, but in the longer run
all I can honestly say the it almost certainly made me MUCH WORSE.
Now in a fit of dispare I am trying multiple, high dose, anti-fungal
herbs ALL AT ONCE! I have been on the following for about 1 week now.
(with meals)
- Garlic - "max strength" x2/day
- Milk Thistle - 175mg x3/day - from Good 'n Natural
- Coenzyme Q10 - 60mg x 3/day - from Holland & Barrett
- Dida - various herbs x3/day - from New Nordic
(incl Thyme, Caramon,oregano etc)
- Pau d'Arco - 1000mg x3/day - from Good n Natural
- Capryllic Acid - 350mg x3/day from Holland & Barrett
- Aloe Vera tablets (Aloe Barbadensis Miller) - Pills of 100mg,
equivalent to 20ml of fresh Aloe Vera } x3 per day. - from Holland &
Barrett
I am also taking:
- a large teaspoon of Psyllium (sp) powder in 2 glasses of water last
thing & first thing in the morning.
- And I am eating 2 liquorish root pills about 3 times/day
before meals, when I remember.
I am aware that some of these doses are rather irresponsibly high and I
was hoping all this would have at least SOME effect, but no. Nothing.
NO EFFECT either way!
So... maybe I dont have Candida after all??
==> Any thoughts?!
I particularly would like to hear from anyone who has
cured ME/CFS with some "miracle" cure HAVING TRIED EVERYTHING ELSE.
With thanks
Ship
Shiperton Henethe
Barry Bingham
Hi Ship
I think one of the reason's we're all here is that there probably isn't
a cure: as in a magic bullet that does it for all fatiguers (bearing in
mind that our fatigue doesn't all have the same causes - I'm sure that
many here will be marvelling at your ability to cycle 30+ minutes a day
- since most of us find that "post exertional malaise" makes us very ill
if we persist in a daily exercise regime regardless of how we feel).
But I certainly recognise some of your symptoms: I too get the funny
toenails and the floaters. Been down the candida anti-fungal/diet route
too. At 50, 6 ft and 12.5 stone, I've been trying lots of different
approaches over the last 12 years, few of which have had any lasting
impact and none which I would describe as a cure. However, some things
do help: and thats possibly the way to approach this. Make things as
good as they can get in the absence of a cure. You mention slow-burn
carbohydrates helping. The last year or so has been the best time in all
these years: since I embraced the "Montignac Method" diet
(http://www.montignac-intl.com/) which focusses on "slow" carbohydrates:
not to lose weight but to improve energy. It's had a dramatic effect. I
still have CFS, I still get myalgia, brain fog and all the rest of it:
but the episodes are less frequent, less severe and improve in much
shorter periods of time. Its not a cure but for me its had a big enough
effect to have changed my life.
But my point is that I felt I was getting on top of CFS only when I
stopped looking for a cure. Accepting that there insn't a cure but that
there ways of managing lifestyle (e.g., I gave up full time work) and
diet (montignac), which can make things a whole lot better than they are
helped me enormously. Good Luck in any event....
Barry
Tim
I read your post with interest. It's difficult to say for sure without doing
a comprehensive case study or tests but I would say that your digestive
system does seem to be compromised. Have you ever considered getting some
tests done because haphazerdly supplementing is actually a very inaffective
method of treating candida. What interests me the most is that you are
trying to fight a disbiosis problem and yet you don't mention pro-biotics or
what diet you are currently on.
You almost certainly do have a yeast problem and it seems that it is
systemic and not just in the bowel. I would definately consider having a
comprehensive digestive stool anayalsis performed with a parasitology
profile. Great Smokies do these in America but you will almost certainly
have to go through your GP or other practitioner. This test will evaluate
your digestive ability, will show if you have a disbiosis problem and will
also show many other intersting things.
Using anti-fungals is one part of the challenge with Candida but the immune
system is still the primary defense against recurrence. Herbal anti-fungals
are actually very poor at destroying candida so the first thing to do is to
remove all the food from the diet which the candida can live off. Something
that it took me a long time to come round to is the fact that in many cases
people with Candida need to cut out almost all carbohydrate in order to get
better. Although I have never tried myslef the specific carbohydrate diet is
very good at treating candida or simply going on to an atkins style protein
diet. Having come from a macrobiotic background this was a hard thing to
come round to but short-term a low carb, high protein diet can do wonders
for serious candida cases.
Lastly, address the total allergic load to give your body chance to heal..
Make your house, body and mind a place in which you can heal.
If you want some good books on the subject try:
Wellness against the odds - Sherry Rogers M.D - www.prestigepublishing.com
The yeast connection - William G. Crook M.D - Amazon
Hope this helps a little,
Best wishes, Tim
----
I am not offering medical advice and everything in this e-mail is for
education purposes only. If people choose to act on the content of this
e-mail it is done at their own risk. Please seek the advice and support of a
qualified medical practitoner before making any changes to your diet or
lifestyle.
----
"ship" <shi...@yahoo.com> wrote in message
news:1125689564....@g44g2000cwa.googlegroups.com...
ship...@yahoo.co.uk
But dont forget that the cured people have mainly b*ggered of to get
on with their lives.
I know of atleast five who have been diagnosed with CFS or ME who
have totally utter recovered. And many have done so miraculously/over
a very short period of time.
So dont be so sure miracles dont happen. For some peole at least
they bl**dy well do!
I'll have a look at montignac thanks.
Ship
Shiperton Henethe
ship
Probiotics?
Yeah I've tried various brands over the years and not noticed any of
them
have any affect. I still cant see how bacteria can be expected to
get though the stomach into the large intesting, myself.
(stomach acid and all that!)
And from my biology days as I recall the small intestine is supposed
to be completely free from bacteria - if not you know about it and
get an upset stomach, no?
What might make more sense is the idea of PREbiotics. I've just started
trying them - who knows they might encourage the good guys...
I have previously tried zero carb diets and it makes me feel incredibly
week. In fact if I eat too much protein at all I feel my liver isnt
really
coping and I feel ill (no meat makes me feel week too, after a day or
too
interestingly). I gather too much protein may strain the liver and end
up
giving you gout! And too much fat is hard to digest too.
Carbs are extremely helpful for brain function and from practice I know
that I would have to be extremely careful on this. I am self employed
and
sorry but I do need a brain in reasonable working order for most of the
working day!
That being said the key thing is that about 10 years ago I tried zero
carbs
even fasting for 60 hours and all sort - but none of it made any
positive difference
to my simptoms in the LONG run. In fact the more I mess with my diet,
bit
by bit the very much WORSE I eventually felt!
I am too dislexic & too fatiqued to read any more books but thanks for
the references.
I think I need to go see an alt med biased specialist again (sigh).
Any recommendations (in Central London)?
e.g.
Max Tomlinson ?(cited in whatreallyworks.co.uk)
John Mansfield? (on WDDTY panel)
Leo Galland?
Keith Eaton?
Harold Gaier? (on WDDTY panel)
Anyone recommend any of the above practitioners?
Ship
Shiperton Henethe
Spencer Spindrift
"Barry Bingham" <simca75...@operamail.com> wrote in message
news:112569757...@lotis.uk.clara.net...
| ship wrote:
| > Any cures for CFS/ME/IBS - esp. AFTER ALL ELSE HAS FAILED?!
Only Dr. Shipman's cure.
Spencer
Hayek
I have send you an e-mail at shi...@yahoo.com, and
you did not even bother to react.
Uwe Hayek.
--
To be controlled in our economic pursuits,
is to be controlled in everything -- F.A.Hayek.
Magna est veritas et praevalebit
(great is truth, and shall prevail)
-- Del Kennedy
Government is not the solution,
government is the problem.
-- Ronald Reagan.
Wie het kleine niet eert, valt op negers.
-- Karin Bloemen
Ik geloof niet meer in Evolutie !
-- Huize Hayek te Heist.
IanW
"Hayek" <hay...@nospam.xs4all.nl> wrote in message
news:43201e34$0$11073$e4fe...@news.xs4all.nl...
> I have send you an e-mail at shi...@yahoo.com, and you did not even
> bother to react.
He's not the only one though, is he? The last 2 emails I sent you, you
didn't reply to.
Ian
Peterken
<ship...@yahoo.co.uk> wrote in message
news:1126129636.9...@f14g2000cwb.googlegroups.com...
Don't know of a *specific* cure for all patients, since as I read everywhere
the cause may be different for every individual.
This leads to the possible conclusion every patient needs a personalized
cure, and no "wonder-cure" exists.
For my girlfriend the only thing that helped was a "clockwork life", see my
post of aug 26th, subject "CBT or graded excercise or whatever it's called".
She almost completely recovered in one year after suffering 7 years of
officially diagnosed CFS, not even being able to walk 100yards those days.
Now she's even working part time, mainly irregular daytime-hours for now but
still better as not at all.
Oh yea, I know, several individuals pop up on a regular base claiming to
have *that sacred cure*, but until now not one can produce real results to
the groups and as such can be looked at as simple cons.
Ask for instance our "friend" hayek here, he was the last one trying to
catch some money for *his cure*, meanwhile bending backward to avoid real
answers and refusing to produce *any* traceable and verifiable results for
months now...
(He even had the arrogance to state he would sue me when I exposed him for
being a fraud, but I'm still waiting where I might send my coordinates to
make life easier for him to meet me in court.... Guess he just doesn't want
a real confrontation in front of any authorities at all ;-D )
Guess most of CFS patients will have to keep looking for what helps their
individual curse, and in my opinion most need not to look for it too far
since it might be a very simple solution.
Personally I'd avoid chemical or medicinal treatments for CFS in specific,
unless to treat another diagnosed medical reason being the possible and
indirect cause for CFS of course.
IanW
news:1TWTe.188886$lk7.10...@phobos.telenet-ops.be...
> Don't know of a *specific* cure for all patients, since as I read
> everywhere the cause may be different for every individual.
> This leads to the possible conclusion every patient needs a personalized
> cure, and no "wonder-cure" exists.
Possibly not.. certainly, different things seem to work for different
people.. unless these different things all go some way to healing a more
fundamental process in the body that is wrong in CFS patients, such as the
malfunctioning cell mitochondira idea that forms the basis of Dr Arnold
Peckerman's cardiac theory of CFS. Or where numerous contributing factors
cause oxidative stress levels to exceed the body's anti-oxidant potential
and by addressing one or more of the major contributors you tip that balance
back in favour of teh antioxidants and allow the body to heal itself. It
could be that there is still some magic ingredient that might act on that
process more directly and work for all sufferers, but if there is then it's
very elusive.
> For my girlfriend the only thing that helped was a "clockwork life", see
> my post of aug 26th, subject "CBT or graded excercise or whatever it's
> called".
After being on the waiting list with the NHS for 3 years, I finally have my
first CBT session in early October! I don't hold out much hope though,
because I've been seeing a psycologist for several months and while it's
nice to be able to talk about things you've shut away in the past and can't
really talk about to anyone else, it's not actually gone any way to curing
my own CFS.
Incidentally, CBT = Cognitive Behaviour Therapy, ie: a form of psychology..
graded exercise therapy is different, and in my case not one that the CFS
"specialist" at the hospital mentioned to me.. probably because I can get
about and work with my particular level of CFS, though my exercise
intolerance is pretty profound when I move out of my "comfort zone".
> She almost completely recovered in one year after suffering 7 years of
> officially diagnosed CFS, not even being able to walk 100yards those days.
> Now she's even working part time, mainly irregular daytime-hours for now
> but still better as not at all.
Is she still recovering now or has that recovery levelled off at "not quite
fully recovered"?
> Oh yea, I know, several individuals pop up on a regular base claiming to
> have *that sacred cure*, but until now not one can produce real results to
> the groups and as such can be looked at as simple cons.
> Ask for instance our "friend" hayek here, he was the last one trying to
> catch some money for *his cure*, meanwhile bending backward to avoid real
> answers and refusing to produce *any* traceable and verifiable results for
> months now...
Oh no, don't start that again.. please!
> Guess most of CFS patients will have to keep looking for what helps their
> individual curse, and in my opinion most need not to look for it too far
> since it might be a very simple solution.
I don't think that is a simple solution at all.. motivating yourself,
following very strict diets & lifestyles is actually very difficult to do
for any length of time, and you say it took her 12 months and she did not
fully recover.. that is a very long time and I think few people can get it
together to do that kind of thing. Look at obese people, or smokers etc -
many don't find a way of achieving the level of discipline needed to crack
their problem and end up suffering as a result.. it's not through lack of
want in many cases, it's because it's very hard to do. With CFS, no-one
really knows what causes it, and you hear abouts lots of people that don't
get significant benefit out of lifestyle changes.. I mean, I eat reasonably
healthy food (rarely drink any alcohol or caffeine) and have been doing so
for probably a year and a half but it hasn't really had any significant
effect on my CFS.. maybe it's stopped it getting worse, although in some
areas I do feel a little worse (being ill for years and getting older is
bound to take it's toll anyway).
Ian
Peterken
"IanW" <who...@whereever.com> wrote in message
news:dfpjho$nor$1...@blackmamba.itd.rl.ac.uk...
> "Peterken" <pete...@hotmail.com> wrote in message
> news:1TWTe.188886$lk7.10...@phobos.telenet-ops.be...
>
>> <snip>>
> Possibly not.. certainly, different things seem to work for different
> people.. ....<snip>, but if there is /an ingredient/ then it's very
> elusive.
>
if there is then it would be in different cures as basic ingredient.
and if it would be then one cure would suffice
to me that's basic logic
>
> After being on the waiting list with the NHS for 3 years, I finally have
> my first CBT session in early October! I don't hold out much hope though,
> because I've been seeing a psycologist for several months and while it's
> nice to be able to talk about things you've shut away in the past and
> can't really talk about to anyone else, it's not actually gone any way to
> curing my own CFS.
>
in my opinion a psy only has people answering their own questions, so why go
there
(assuming here you have a partner to talk to of course)
> Incidentally, CBT = Cognitive Behaviour Therapy, ie: a form of
> psychology.. graded exercise therapy is different, and in my case not one
> that the CFS "specialist" at the hospital mentioned to me.. probably
> because I can get about and work with my particular level of CFS, though
> my exercise intolerance is pretty profound when I move out of my "comfort
> zone".
>
I know of CBT in full, but I mentioned both since both came up in replies to
what me and my girlfriend did...
maybe there's still another name for it, feel free to say so
>
> Is she still recovering now or has that recovery levelled off at "not
> quite fully recovered"?
she's almost fully recovered, from being weeks in bed to a rather active
life and even part-time working now .
If it goes on like this, she'll be fulltime active in (less than) another
year
>
>
> Oh no, don't start that again.. please!
he's not worth it, so don't worry
>
> I don't think that is a simple solution at all.. motivating yourself,
> following very strict diets & lifestyles is actually very difficult to do
> for any length of time, and you say it took her 12 months and she did not
> fully recover..
as I stated, she's almost fully there and improving still by the month
> that is a very long time and I think few people can get it together to do
> that kind of thing. Look at obese people, or smokers etc - many don't find
> a way of achieving the level of discipline needed to crack their problem
> and end up suffering as a result.. it's not through lack of want in many
> cases, it's because it's very hard to do.
well, maybe it's just the combination of two strongheaded people doing the
trick here.... dunno for sure, but it did the trick that's for us in
motivating each other
> With CFS, no-one really knows what causes it, and you hear abouts lots of
> people that don't get significant benefit out of lifestyle changes.. I
> mean, I eat reasonably healthy food (rarely drink any alcohol or caffeine)
> and have been doing so for probably a year and a half but it hasn't really
> had any significant effect on my CFS.. maybe it's stopped it getting
> worse, although in some areas I do feel a little worse (being ill for
> years and getting older is bound to take it's toll anyway).
>
> Ian
we all get older, that's for sure :-)
and we did not do anything special about food (although we basically always
have been eating rather healthy), only change was "shifting" the day back
where it belongs and living by the clock thus avoiding stressy "last-minute"
and "always too late" situations since (almost) always knowing what comes
next.
for some it might be an elusive chronic infection, for others it might be a
long stress period causing it, so changing lifestile *might* do it for some
and not for others
always worth to try it I guess, it hurts no-one and there's no poisoning
with different cures involved
Will Gortoa
>A lot of people on newsgroups are telling me that there is no cure.
Because, currently, there is no cure. Fact. Not entirely surprising,
given that we're only just about coming to point where we're beginning
to understand what it actually is!
>But dont forget that the cured people have mainly b*ggered of to get
>on with their lives.
'Cured'? Nah, recovered [fully or significantly], definitely. Mind you,
I was around at the inception of this NG - a good number of years ago -
and either directly or indirectly I can't say I can recall anyone
[Hayek, sit down! ;)] who claims to have *fully* recovered or been
'cured'.
>I know of atleast five who have been diagnosed with CFS or ME who
>have totally utter recovered.
Interesting in itself. Were they all a reliable diagnosis? What sort of
timescales are you talking about? And what was the key to 'totally utter
recovered' in each case?
> And many have done so miraculously/over a very short period of time.
Many of those 5? Or is this another unspecified number?
With an accurate diagnosis and correct management strategy an 'early'
recovery is considerably more common than a longer term one. [I can't
remember the figures now but, IIRC, there were statistics produced quite
some time ago which illustrated this well: between 1-2 years most people
(correctly and reliably diagnosed) recover; between 2-5 years another
lesser proportion recover; and 5+ years a 'full' recovery becomes much
less likely]. The vast majority of people I (personally) know of, fall
into that last category.
>So dont be so sure miracles dont happen. For some peole at least
>they bl**dy well do!
Indeed. And spontaneous recovery is often the best way to view this, as
its generally an accepted pattern within this weird disease. However,
it's not unusual - or logically unreasonable - for people to put their
respective recovery/significant improvement down to a prevailing
'treatment' regime. Personally, I think it's more likely to be a
combination of coincidence and sensible, palliative care.
--
Will 'Or Is It' Gortoa
[IMPORTANT! Replace nospam with ollis for personal replies. THANKS. :)]
Hayek
I simply could not.
I told you, I was conned out of my wifi card.
I responded to you here and the last thing we said
was, that we were going to restart our (private)
e-mail conversations.
With all the fuzz caused by that loon and others here,
I kind of lost all my motivation towards promoting my
cure for cfs.
Uwe Hayek.
--
To be controlled in our economic pursuits,
is to be controlled in everything -- F.A.Hayek.
Magna est veritas et praevalebit
(great is truth, and shall prevail)
-- Del Kennedy
Government is not the solution,
government is the problem.
-- Ronald Reagan.
Once a government is committed to the principle of
silencing the voice of opposition, it has only one way
to go, and that is down the path of increasingly
repressive measures, until it becomes a source of
terror to all its citizens and creates a country where
everyone lives in fear.
-- Harry S Truman (1884 - 1972), August 8, 1950
Hayek
Serena Blanchflower
> A lot of people on newsgroups are telling me that there is no cure.
> But dont forget that the cured people have mainly b*ggered of to get
> on with their lives.
>
> I know of atleast five who have been diagnosed with CFS or ME who
> have totally utter recovered. And many have done so miraculously/over
> a very short period of time.
I think there are a couple of big problems with this. The first is that,
until there is a reliable diagnostic test, we don't know if people who
appear to be cured actually had the same illness as the rest of us.
The other question is whether they were really cured or were just in
remission. After my first brush with ME, most people who knew me
considered I was cured; only people who knew me pretty well could see the
difference. Come to that, I didn't think of myself as still being ill,
although I knew I wasn't as well as I had been before my illness.
That certainly didn't prevent the ME coming back, worse than ever, some
years later.
--
Cheers, Serena
48, ill since '83 with 12 years remission before it came back in '96. Now
largely housebound, living alone in Hampshire, with two cats.
Hampshire Friends with ME website: <http://www.hantsmesupport.co.uk>
Peterken
Might be easier posting in english, not everybody understands dutch here...
For those interested:
It's just hayek again trying to shout louder as a guy going by the name
"henk van loon"
Guess it was meant for the dutch newsgroup.
"Hayek" <hay...@nospam.xs4all.nl> wrote in message
news:4321ad3d$0$11064$e4fe...@news.xs4all.nl...
IanW
Do you think we could proceed with that idea from a couple of months ago?
That is, I'm still interested in trying your cure if you're prepared to send
it to me. I would document symptoms and keep a diary of each day on the
cure, so that I could better report the effects. I am not one to "bite the
hand.." and so if it did work for me then you'd have a third party voice to
help substantiate your claims.
I can understand you must get frustrated by the lack of belief in the CFS
community. After that success Jane had with Molybdenum, I posted the details
to an ME mailing list, and a couple of weeks later asked if anyone had tried
it but no-one responded. I thought this a bit odd because if I read
something from a real person, rather than some unsubstantiated claims on a
website then I'd definitely go out and try it, especially when it's so
cheap.. however, unless they are keeping quiet about it then no-one's
bothered!
Regards
Ian
"Hayek" <hay...@nospam.xs4all.nl> wrote in message
news:43208242$0$11077$e4fe...@news.xs4all.nl...