Re: Three years.. running out of ideas

January 19, 2006

Hiya Luke

I fooled around with Magnesium per two rheumatologists until I found that my

body responded to liquid form. I took 1/2 to 1 teaspoon three to four times a

day and got signficant benefit especially when coupled with it's cofactor,

vitamin B6.

Hope this helps and good luck to you.

I like Siberian ginseng for adrenal support. Not as stimulating as Licorice

root can be

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

January 19, 2006

In a message dated 1/19/2006 8:36:03 PM Eastern Standard Time, pj7@...

writes:

I am now at the

point that I don't care what works - just willing to try what might

work and leave the double blind studies to others.

a Carnes

Welcome to the party, a!

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

January 20, 2006

Hi Cort

what is your actual regime for CFS?

regards

CS

January 20, 2006

Luke, without boring the list to death I have one question and one

suggestion.

1. Why did you take doxy? If you suspect you have some underlying

infection I would certainly try some other antibiotic, possibly

minocycline or Zithromax at high dose, say 500 mg a day for the

Zithro. Don't know what dose to suggest for the mino and I would not

take them at the same time. Mino can be very difficult to take.

2. Based on my limited experience now with Recup I sure would keep

trying it for several months. I don't think it can hurt and it may be

the key to recovery. I am just now trying to read all the ion channel

info - pretty confusing for one such as I with no chemistry

background. I figure Recup may be the magic fix that puts all

my " intelligent study " to shame. One can only hope. I would not

hesitate to take an antibiotic at the same time. I am now at the

point that I don't care what works - just willing to try what might

work and leave the double blind studies to others.

a Carnes

>

> Hey all,

>

> I've been enjoying the recent discussion about the DAN! treatments.

I've

> been chronically ill for 3 years now (I'm 24), have tried a billion

things

> (inc many things I've picked up from this list , but am running

out of

> ideas, so any suggestions would be really appreciated.. I'm more

than happy

> to experiment!

>

> I basically have FM ( & all it entails), but instead of tender

points, my

> muscles just ache & get very sore very quickly depending on what

I'm doing.

> The weirdest thing I've noticed is that in times of physical stress

(ie

> doing something normal!), my body can pump out enough stress

hormones to

> keep me feeling 'ok', however these eventually run out and then I

crash for

> days with mild addison's like symptoms. (I say mild because severe

addisons

> would be near death!). Its weird because they are the moments I

feel most

> normal :\ There's obviously something wrong with my energy

metabolism, such

> that I'm in almost permanent 'energy debt' (=muscular pain), but my

adrenals

> can keep me going for short periods of time before they burn out,

and I

> crash. Plus my CNS (?) seems to be wayy hyperactive, so I have a

lot of food

> intolerances and have a very low stress tolerance, and often feel

quite

> 'wired'.

>

> My cortisol tends to be low-normal (except if I'm 'locked' in

stress mode &

> its high-normal), and aldosterone tends to be quite low too

(fludrocortisone

> way overstimulates) which is bizarre. After trying many different

ways to

> help my adrenals I'm pretty sure they are *not* the cause of my

probs, just

> the effects of something broken somewhere else :\ Red cell Mg =

low, but no

> amount of magnesium supplementation seems to help.

>

> The only things that have helped so far, are:

> - salt tablets. I take 1.8g with meals and it seems to have

improved blood

> pressure which has improved things a little for me (not surprising

given low

> aldosterone). Bizarre how something cheap & simple is helpful.

> - failsafe diet (http://fedupwithfoodadditives.info/), free of

salicylates,

> amines, additives, preservatives + I'm gluten free too (don't

tolerate it,

> though not coeliac). I've been on this for 2 yrs now, taking the

chemical

> load off my body helped significantly with fatigue & mood (despite

being a

> fairly laid back person, I would swing between feel like I was

bouncing off

> the walls, and then would be very irritable & depressed!), with the

mood

> changes being most significant. I can full appreciate why the diet

does

> wonders for kids with ADD/mood/behaviour issues!

> - general amino acid supplements, which are only very mildly

helpful.

>

> Everything else I've tried either really overstimulates me, or does

nothing

> (and a couple of things my gut can't tolerate).

>

> Hormones I've tried:

> - mega doses of T3 thyroid hormones (as per Dr Lowe, who is a

legend) =

> overstimulation, no sx change.

> - injecting human growth hormone (tried for a few months, did

nothing, very

> little evidence it would)

> - adrenal hormones: cortisol in varying doses, inc replacement doses

> (nothing, useful in a crash); dhea (even 10mg = overstim); florinef

> (overstim); pregnenolone (nothing); testosterone (overstim);

baschetti

> licorice (overstim, not recommended).

>

> Notable Vitamins/supps I've tried (too many to list em all)

> - vitamin IV pushes, C, B, Mg, didn't do much.

> - magnesium (Ultra muscleze & tonnes of it, everyone recommends,

does

> nothing for me), epsom salt baths (nothing)

> - Proboost (stirs up my gut a little, might help with colds, but

nothing

> overall)

> - RenewPro (took 2 scoops/day for 6 weeks, tolerated it fine, it

just did

> nothing???)

> - Recup (actually about to try this again, crashed a couple of

times taking

> it late last year so I have to work out if it was coincidence or

causal.

> Will take recommend dose and see if I crash again :S)

> - B12 supps + melatonin (suppose to be NO scavengers, which I

thought may

> have been a prob, but did nothing)

> - High dose coq10 & l-carnitine (nothing)

>

> Meds I've tried:

> - Nilstat, Nizoral, Sporanox (all anti fungals, did nothing)

> - doxycycline (took this for months, did zip)

> - Bactroban (nasal antibiotic - Neil McGregor, PhD suggested this

angle of

> possible infection, did nothing)

> - LDN (took this for a few weeks, knocked out sinus infection which

was

> bothering me (I could tell because I had this strong metallic taste

in my

> mouth when it was doing its thing, eiiw) but couldn't sleep on it,

so

> stopped. No overall sx change)

>

> Other things I've tried

> - Far Infrared sauna (tried an expensive one at friends house, and

bought a

> cheap one of ebay (not recommended, had VERY nasty, pungent

chemical plastic

> smell) but this just stressed my body = adrenals kick in & I feel

ok, then

> burnout, no overall sx change).

> - just about every physical therapy known to man looking for

relief!

>

> Soo in light of all that, anyone want to hazard a guess if its

worthwhile

> following up the DAN!/glutathione/methylation cycle angle

(Rich?) ? I

> thought for a while it may have been a mitochondrial issue but

symptoms &

> tests (high lactate & pyruvate, but in normal ratio) seemed to make

that

> unlikely, though I still wonder given I had a history of exercise

> intolerance (would get really sick sometimes after sport, would

struggle to

> breath during & get very burnout after) before getting a virus for

a month

> and becoming chronically ill.

>

> Any other angles I should be looking at? I'm going to try Recup

again, but

> otherwise I'm generally happy to experiment with whatever.. I'm

just running

> out of rocks to look under, so to speak :\ I'm also interest in any

tests

> that are worth pursuing.. I have a co-operative Dr here in Sydney

if needs

> be.

>

> Cheers, feel free to email me on or off list

>

> Thanks!!

> Luke

>

January 20, 2006

Of course you should try the Dan/Autism/Glutathione stuff - why not? I dont

think its too expensive. Give it a shot.

I should tell you I was sick for about ten years and NOTHING worked for me

(except macrobiotic diet but it also eventually creamed me) and then I day I

tried zinc solution and it helped and since then almost EVERYTHING helps. So

somewhere along the line I crossed some line - it may be that you will have to

cross that line at some point as well - I really dont know. The problem for me

is that I cant tolerate the energy boost and have to stop everything.

I dont really know why the emphasis on adrenals given your low but still

normal cortisol state and the proven ability of your adrenals to get boosted

properly under stress but I'm not a doctor.

You may think this is silly but I suggest sitting meditation; it calms your

mind, reduces your stress levels and most importantly perhaps really oxygenates

your body. I think its a really effective at least ad junct treatment until

better things come along or until the other treatments start kicking in.

You might as well try zinc solution as well. A paper just came out indicating

that CFS patients are low in zinc and listing all the problems that can cause.

Luke s <stevens@...> wrote:

Hey all,

I've been enjoying the recent discussion about the DAN! treatments. I've

been chronically ill for 3 years now (I'm 24), have tried a billion things

(inc many things I've picked up from this list , but am running out of

ideas, so any suggestions would be really appreciated.. I'm more than happy

to experiment!

I basically have FM ( & all it entails), but instead of tender points, my

muscles just ache & get very sore very quickly depending on what I'm doing.

The weirdest thing I've noticed is that in times of physical stress (ie

doing something normal!), my body can pump out enough stress hormones to

keep me feeling 'ok', however these eventually run out and then I crash for

days with mild addison's like symptoms. (I say mild because severe addisons

would be near death!). Its weird because they are the moments I feel most

normal :\ There's obviously something wrong with my energy metabolism, such

that I'm in almost permanent 'energy debt' (=muscular pain), but my adrenals

can keep me going for short periods of time before they burn out, and I

crash. Plus my CNS (?) seems to be wayy hyperactive, so I have a lot of food

intolerances and have a very low stress tolerance, and often feel quite

'wired'.

My cortisol tends to be low-normal (except if I'm 'locked' in stress mode &

its high-normal), and aldosterone tends to be quite low too (fludrocortisone

way overstimulates) which is bizarre. After trying many different ways to

help my adrenals I'm pretty sure they are *not* the cause of my probs, just

the effects of something broken somewhere else :\ Red cell Mg = low, but no

amount of magnesium supplementation seems to help.

The only things that have helped so far, are:

- salt tablets. I take 1.8g with meals and it seems to have improved blood

pressure which has improved things a little for me (not surprising given low

aldosterone). Bizarre how something cheap & simple is helpful.

- failsafe diet (http://fedupwithfoodadditives.info/), free of salicylates,

amines, additives, preservatives + I'm gluten free too (don't tolerate it,

though not coeliac). I've been on this for 2 yrs now, taking the chemical

load off my body helped significantly with fatigue & mood (despite being a

fairly laid back person, I would swing between feel like I was bouncing off

the walls, and then would be very irritable & depressed!), with the mood

changes being most significant. I can full appreciate why the diet does

wonders for kids with ADD/mood/behaviour issues!

- general amino acid supplements, which are only very mildly helpful.

Everything else I've tried either really overstimulates me, or does nothing

(and a couple of things my gut can't tolerate).

Hormones I've tried:

- mega doses of T3 thyroid hormones (as per Dr Lowe, who is a legend) =

overstimulation, no sx change.

- injecting human growth hormone (tried for a few months, did nothing, very

little evidence it would)

- adrenal hormones: cortisol in varying doses, inc replacement doses

(nothing, useful in a crash); dhea (even 10mg = overstim); florinef

(overstim); pregnenolone (nothing); testosterone (overstim); baschetti

licorice (overstim, not recommended).

Notable Vitamins/supps I've tried (too many to list em all)

- vitamin IV pushes, C, B, Mg, didn't do much.

- magnesium (Ultra muscleze & tonnes of it, everyone recommends, does

nothing for me), epsom salt baths (nothing)

- Proboost (stirs up my gut a little, might help with colds, but nothing

overall)

- RenewPro (took 2 scoops/day for 6 weeks, tolerated it fine, it just did

nothing???)

- Recup (actually about to try this again, crashed a couple of times taking

it late last year so I have to work out if it was coincidence or causal.

Will take recommend dose and see if I crash again :S)

- B12 supps + melatonin (suppose to be NO scavengers, which I thought may

have been a prob, but did nothing)

- High dose coq10 & l-carnitine (nothing)

Meds I've tried:

- Nilstat, Nizoral, Sporanox (all anti fungals, did nothing)

- doxycycline (took this for months, did zip)

- Bactroban (nasal antibiotic - Neil McGregor, PhD suggested this angle of

possible infection, did nothing)

- LDN (took this for a few weeks, knocked out sinus infection which was

bothering me (I could tell because I had this strong metallic taste in my

mouth when it was doing its thing, eiiw) but couldn't sleep on it, so

stopped. No overall sx change)

Other things I've tried

- Far Infrared sauna (tried an expensive one at friends house, and bought a

cheap one of ebay (not recommended, had VERY nasty, pungent chemical plastic

smell) but this just stressed my body = adrenals kick in & I feel ok, then

burnout, no overall sx change).

- just about every physical therapy known to man looking for relief!

Soo in light of all that, anyone want to hazard a guess if its worthwhile

following up the DAN!/glutathione/methylation cycle angle (Rich?) ? I

thought for a while it may have been a mitochondrial issue but symptoms &

tests (high lactate & pyruvate, but in normal ratio) seemed to make that

unlikely, though I still wonder given I had a history of exercise

intolerance (would get really sick sometimes after sport, would struggle to

breath during & get very burnout after) before getting a virus for a month

and becoming chronically ill.

Any other angles I should be looking at? I'm going to try Recup again, but

otherwise I'm generally happy to experiment with whatever.. I'm just running

out of rocks to look under, so to speak :\ I'm also interest in any tests

that are worth pursuing.. I have a co-operative Dr here in Sydney if needs

be.

Cheers, feel free to email me on or off list

Thanks!!

Luke

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

January 20, 2006

mjh, a & Cort, replies are below

mjh: Thanks for the tip about liquid magnesium & taking it with B6 -

I've read some of the other comments about it so I'll keep it in mind.

a: I took the doxy on the recommendation of Neil McGregor, who

suspected mycoplasma infection after the Bactroban didn't work. I

really appreciated his advice, and tried to stick to Nicholson's

protocol, but I didn't get any reaction, good or bad from it. If I had

experienced any sort of change I would investgate further, but I think

it was more speculation on McGregor's behalf. If only we had PCR

testing available here in Australia!

I'll definitely try Recup for 6 months+ if I tolerate it (and I

should, it seems like such innocuous stuff!), as I have bought enough

to keep me going for 6 months already. The weird thing is, while its

suppose to rehydrate the body, it makes me feel more dehydrated, and

my whole body feels dry (skin, eyes, throat) ?! Very strange.. will

see what happens when I try it again.

Cort: Thanks for the suggestions. What zinc solution do you use, and

what is it exactly? I don't think the suggestion about meditation is

silly at all, I've practised Buteyko breathing

(http://members.westnet.com.au/pkolb/buteyko.htm) for several years,

but have a fairly low ceiling as to what I can achieve due chronic

hyperventilation from metabolic problems :\ Would be a lot worse off

without it though!

Cheers

Luke

January 20, 2006

You mentioned a virus triggering your CFS/FM; what was that and have

you done any anti-viral treatments since?

You are on that salicylate free diet, but have you tried

guaifenesin? (www.guaidoc.com, www.guailife.com) This is a simple

thing to try (over the counter at the drug store as " expectorant " ).

I mention it because it seems to be helping me with muscle/fascia

pain, like nothing else has (I too have tried many supplements).

Since you're young and don't seem to get benefit from supplements,

maybe the problem is not deficiencies, but excess metabolic wastes

(phosphates, as in Dr. St. Amand's theory) that can't get OUT. I

think this creates a sort of lactic acidosis problem (I'm thinking of

getting a water alkalinizer next, but that may be a long shot).

Anyway, the guai seems to be a pretty harmless thing to try if you

haven't already. No double-blind studies, and many FM docs think St.

Amand's theory is nonsense, so there are two more reasons to try it!

Also check the detailed post about vitamin B12 from about a week ago,

maybe B12 shots would help you.

>

> Hey all,

>

> I've been enjoying the recent discussion about the DAN! treatments.

I've

> been chronically ill for 3 years now (I'm 24), have tried a billion

things

> (inc many things I've picked up from this list , but am running

out of

> ideas, so any suggestions would be really appreciated.. I'm more

than happy

> to experiment!

>

> I basically have FM ( & all it entails), but instead of tender

points, my

> muscles just ache & get very sore very quickly depending on what

I'm doing.

> The weirdest thing I've noticed is that in times of physical stress

(ie

> doing something normal!), my body can pump out enough stress

hormones to

> keep me feeling 'ok', however these eventually run out and then I

crash for

> days with mild addison's like symptoms. (I say mild because severe

addisons

> would be near death!). Its weird because they are the moments I

feel most

> normal :\ There's obviously something wrong with my energy

metabolism, such

> that I'm in almost permanent 'energy debt' (=muscular pain), but my

adrenals

> can keep me going for short periods of time before they burn out,

and I

> crash. Plus my CNS (?) seems to be wayy hyperactive, so I have a

lot of food

> intolerances and have a very low stress tolerance, and often feel

quite

> 'wired'.

>

> My cortisol tends to be low-normal (except if I'm 'locked' in

stress mode &

> its high-normal), and aldosterone tends to be quite low too

(fludrocortisone

> way overstimulates) which is bizarre. After trying many different

ways to

> help my adrenals I'm pretty sure they are *not* the cause of my

probs, just

> the effects of something broken somewhere else :\ Red cell Mg =

low, but no

> amount of magnesium supplementation seems to help.

>

> The only things that have helped so far, are:

> - salt tablets. I take 1.8g with meals and it seems to have

improved blood

> pressure which has improved things a little for me (not surprising

given low

> aldosterone). Bizarre how something cheap & simple is helpful.

> - failsafe diet (http://fedupwithfoodadditives.info/), free of

salicylates,

> amines, additives, preservatives + I'm gluten free too (don't

tolerate it,

> though not coeliac). I've been on this for 2 yrs now, taking the

chemical

> load off my body helped significantly with fatigue & mood (despite

being a

> fairly laid back person, I would swing between feel like I was

bouncing off

> the walls, and then would be very irritable & depressed!), with the

mood

> changes being most significant. I can full appreciate why the diet

does

> wonders for kids with ADD/mood/behaviour issues!

> - general amino acid supplements, which are only very mildly

helpful.

>

> Everything else I've tried either really overstimulates me, or does

nothing

> (and a couple of things my gut can't tolerate).

>

> Hormones I've tried:

> - mega doses of T3 thyroid hormones (as per Dr Lowe, who is a

legend) =

> overstimulation, no sx change.

> - injecting human growth hormone (tried for a few months, did

nothing, very

> little evidence it would)

> - adrenal hormones: cortisol in varying doses, inc replacement doses

> (nothing, useful in a crash); dhea (even 10mg = overstim); florinef

> (overstim); pregnenolone (nothing); testosterone (overstim);

baschetti

> licorice (overstim, not recommended).

>

> Notable Vitamins/supps I've tried (too many to list em all)

> - vitamin IV pushes, C, B, Mg, didn't do much.

> - magnesium (Ultra muscleze & tonnes of it, everyone recommends,

does

> nothing for me), epsom salt baths (nothing)

> - Proboost (stirs up my gut a little, might help with colds, but

nothing

> overall)

> - RenewPro (took 2 scoops/day for 6 weeks, tolerated it fine, it

just did

> nothing???)

> - Recup (actually about to try this again, crashed a couple of

times taking

> it late last year so I have to work out if it was coincidence or

causal.

> Will take recommend dose and see if I crash again :S)

> - B12 supps + melatonin (suppose to be NO scavengers, which I

thought may

> have been a prob, but did nothing)

> - High dose coq10 & l-carnitine (nothing)

>

> Meds I've tried:

> - Nilstat, Nizoral, Sporanox (all anti fungals, did nothing)

> - doxycycline (took this for months, did zip)

> - Bactroban (nasal antibiotic - Neil McGregor, PhD suggested this

angle of

> possible infection, did nothing)

> - LDN (took this for a few weeks, knocked out sinus infection which

was

> bothering me (I could tell because I had this strong metallic taste

in my

> mouth when it was doing its thing, eiiw) but couldn't sleep on it,

so

> stopped. No overall sx change)

>

> Other things I've tried

> - Far Infrared sauna (tried an expensive one at friends house, and

bought a

> cheap one of ebay (not recommended, had VERY nasty, pungent

chemical plastic

> smell) but this just stressed my body = adrenals kick in & I feel

ok, then

> burnout, no overall sx change).

> - just about every physical therapy known to man looking for

relief!

>

> Soo in light of all that, anyone want to hazard a guess if its

worthwhile

> following up the DAN!/glutathione/methylation cycle angle

(Rich?) ? I

> thought for a while it may have been a mitochondrial issue but

symptoms &

> tests (high lactate & pyruvate, but in normal ratio) seemed to make

that

> unlikely, though I still wonder given I had a history of exercise

> intolerance (would get really sick sometimes after sport, would

struggle to

> breath during & get very burnout after) before getting a virus for

a month

> and becoming chronically ill.

>

> Any other angles I should be looking at? I'm going to try Recup

again, but

> otherwise I'm generally happy to experiment with whatever.. I'm

just running

> out of rocks to look under, so to speak :\ I'm also interest in any

tests

> that are worth pursuing.. I have a co-operative Dr here in Sydney

if needs

> be.

>

> Cheers, feel free to email me on or off list

>

> Thanks!!

> Luke

>

January 20, 2006

I dont use zinc anymore - I cant use anything for more than a short period, so

all I remember was that it was a zinc solution. I think there are a couple of

brands you can find in the US.

luke200032003 <stevens@...> wrote: mjh, a & Cort, replies are below