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Help!! I'm drowning in supplements/pills!!

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On Apr 27, 2006, at 3:38 PM, wrote:

> Hi there Cs,

OK if I chime in here?

> I hope you dont mind me asking you,

> I am interested to understand how can you tell when you have 'attained

> max benefit' from your supplements,

> and how do you know what dose would be most appropriate as a

> maintenance dose? What, if any, measurable benefits are you

> maintaining?

In my case, it's taken me years and years to work up to the

supplement regimen I have now.

I only EVER add one thing at a time. Most things get a 1-2 week

trial. By then, in most cases, I know whether it's doing anything or

not.

Somethings take longer to work (Recup might be one of these), so for

something like that, I'd plan to take the trial longer. The main

thing is to decide in advance how long you plan to wait to see if

there's a benefit.

I always start at the high end of the recommended dose. (For most

things, this is easy to find with a little research on the Web.) That

way, the effects are more unmistakeable. If it's clear that it's too

much, it's easy to tone it down. But if you don't take enough, you

might never discover what the true benefit might be.

> May I ask, no offense but how can you tell for certain if your

> supplement is making any difference as opposed to the normal

> fluctuations of this illness?

I've never found this to be a problem. Most things don't make me feel

" better " a general way. More usually, the benefits are very specific.

When I take thyroid, my neck muscles relax and I'm more alert. When I

take magnesium. my muscles and bones stop hurting. If I don't get my

NAC, my allergies trigger more easily. These are very specific

results, and in most cases, they were pretty evident within a couple

weeks of experimentation.

I built up my collection very slowly over time. I heard about this,

and tried it. Nothing. And then I heard about that, and tried

it...and it helped. And so on, over the years.

I should probably note the thyroid, all by itself, probably doubled

the effect of everything else I was taking put together. It and the

glutathione -- both prescriptions -- are the two critical pieces. But

one of the things they do is enable my system to use all the other

stuff more effectively.

> I am curious as to whether you take your supplements just one at a

> time

> or do you take several each day?

I take a whole big handful (6-8 at a time with big swallows of water)

in the morning, and another half-handful at night. Every single one

of them does something important and useful; and I need to take them

each day (or twice a day) to continue getting that specific benefit.

> Would you mind if I asked which

> supplements you have chosen to take and which you continue with, and

> can you explain why?

You asked for it:

SUPPLEMENTS LIST

Vitamins

Dose AM PM

GNC Women's Ultra Gold multivitamin X

B-100 (100 mg each of major

Bs) X

Ester-C

500 X

Minerals

Calcium Citrate

200 X

MSM

500 X

Magnesium/p5p 450/150 X

Amino Acids

Glutathione

100 X

Glucosamine Sulfate

1000 X X

N-Acetyl-L-Cysteine

300 X X

CLA

400 X X

5-HTP

50 X

L-Tyrosine

50 X

Glutamine

100 X

L-Carnitine

200 X X

Folic Acid

100 X X

Antioxidants

Masqilier's OPCs (pycnogenol)

100 X X

CoEnzyme Q10

100 X X

Alpha Lipoic Acid

200 X X

DMAE

100 X

DHEA

37 X

Oils

Evening Primrose Oil

100 X X

Salmon Oil

200 X

Flaxseed Oil

200 X

Herbs

Colon Cleanse

200 X X

Kyolic (denatured garlic)

100 X

Female Well (dong quai, cohosh, etc.)

300 X X

St. 's

Wort

100 X X

Other

Progesterone Cream

2tbsp X

Estrogen drops 1.5ml X

Dessicated thyroid -- compounded, not name brand

120 X

B12/Glutathione/AMP shots (2x/week)

> its just that this thread has really made me think now; and I am

> starting to ask myself what actual benefits I am getting-if any- from

> the supplements that I have been taking personally.

Best test: stop taking them all (or all but the ones you know are

absolutely essential). Give your body a week to detox.

Then add one back -- perhaps the one you most clearly believe gives

you a big benefit.

A week later, add another. And so on. Keep notes about how you feel

with each addition.

I do this about once every 1-2 years, just to make sure I'm still on

track.

> My symptoms have always fluctuated dramatically, I liken it to a

> roller

> coaster ride; there is no obvious reason why I feel a bit better one

> day and much worse the next- apart from the obvious times when I

> know I

> have tried to do too much.

> This variation in my symptoms, means that I am completely unable to

> tell, whether any of the dozen or so supplements I am taking, are

> having any beneficial effect or even otherwise;

> especially considering I have had ME for ten years now,

> and I have been taking supplements for fully 8 years-

> but I honestly dont feel any different now than I did before I

> started

> on these supplements; I dont feel any improvement and I have

> definitely

> not been cured.

>

> Is this food for thought?

I don't look at my supplements as a " cure. " There are, objectively,

only maybe three or four things on the whole list that are likely

conferring any long-term healing benefit. The thyroid has definitely

helped reverse some symptoms. The glutathione is making me stronger

and more resilient. Beyond that...?

But, as I've said here recently, hoping for a cure is a bit like

hoping for world peace. Until the real thing arrives, I'll do what it

takes to get myself through this day. And the above medicine set does

that amazingly well.

Sara

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On Apr 28, 2006, at 1:39 AM, wrote:

> Hey thats brilliant! thanks very much for that amazingly thoughtful

> reply.

>

> It is very interesting for me to see what you are taking, now I can

> judge what coincides with what I take (sometimes different things

> that have the same reputed benefits); the things I take that you

> dont, and the things I am not taking.

>

> In my case I have discovered something; looked it up and researched

> it thoroughly to make sure I know what it is all about; purchased it;

> and, so long as it has not had a highly obvious adverse effect (which

> some things do) taken it ever since in the original dose with an

> almost superstitious attitude.

It's notable that there are a couple things I started off high (I

thought), but ended up getting much better benefit by raising the

dose because I got better info -- in both cases, from this list.

These include l-carnitine, and CLA. Both of these were once-a-day-in-

the-am for a long time; but turned out to be seriously helpful when I

upped them to two-am-two-pm.

>

> Most of the supplements you take look like the ordinary ones but I

> would assume these other ones must

> come from your doctor?:

>

> Progesterone Cream

> 2tbsp X

> Estrogen drops 1.5ml

> X

> Dessicated thyroid -- compounded, not name brand

> 120 X

> B12/Glutathione/AMP shots (2x/week)

Yes. These are the prescription items in the group.

> And off the top of my head I imagine you must be in the USA; but if I

> am wrong please correct me

I live in Canada, but all the above were originally prescribed by

doctors in the US. My Canadian doc re-wrote the Rxes for me so now I

can get them locally.

> I agree with you that it would probably be a good idea for me to take

> your advice and maybe cut out my supplements for a while, I think a

> month should do it.

That might be overkill, but you'd certainly know by then.

> May I also list what I am taking?

> perhaps some intelligent soul could look it over and make a

> constructive comment or even advise me.

>

> " EPA FISH OIL CONCENTRATE -2 X 1000MG

I find these useful for neurological functioning.

> VITAMIN C 1000MG WITH BIOFLAVANOIDS- X 1

The C is an imporant antioxidant -- essential for helping with

oxidative stress. Bioflavinoids are like OPCs, which many of us are

finding helpful, too.

> EVENING PRIMROSE OIL 1000MG (90MG gla) -X 2

Hormone balancing becomes particularly critical for PWC women as we age.

> ST JOHNS WORT 300 MG -X 2

This is one of the most important ones for me. It's very effective at

combating the depression that seems to be part and parcel of ME. I'd

be in a constant funk without SJW morning and evening.

I also take 5-HTP at night before bed. SJW inhibits serotonin uptake;

HTP is a chemical precursor to serotonin, which ensures that when

your body is ready to make it, it's got the groceries on board to do

so. So, between the two, you're priming the serotonin pipeline at

both ends, to overall greater effect.

I find this combo much more gentle and effective than SSRIs -- and no

side effects!

> N-ACETYL-L-CYSTEINE 500MG- X 1 (ALWAYS WITH HIGH PROTIEN FOOD)

This sounds a little low by my lights. Dr. Guilford gave me 900mg of

NAC morning and evening. It's been very, very helpful in calming my

immune system to keep it from overreacting to things.

> DHEA 25MG-x 1

I'll be interesting to see what happens (if anything) if you take

this one away. I didn't do at all well with DHEA on its own at this

dose -- but with thyroid, the magic happened.

> NATURAL VITAMIN E- 200iu -X 1

> GINGKO BILOBA LEAF 30 MG - X 1

I've considered taking gingko off and one. This one, too, you may miss.

> ULTRA GINSENG (MANCHURIAN) 500MG - X 2

> ODOURLESS GARLIC 500MG X 1

I was considering giving up my Kyolic a while back -- and then I

started reading 's mold stuff, and reconsidered. Garlic is very

helpful at discouraging mold illness.

> RADIANCE MULLTIVITAMINS + MINERALS -X1

A good multi seems like a baseline requirement. This is always the

first one I add back.

> CHELATED ZINC 25MG -X 1

> SELENIUM 200 -X1 "

Interesting. My multi has lots of both these minerals in it. (It does

not, however, have enough magnesium.)

>

> I TAKE ALL OF THESE TOGETHER ALONG WITH MY MAIN MEAL OF THE DAY

>

> PLUS 3MG MELATONIN I HR BEFORE BEDTIME. "

Hmm. Does this help you sleep? I've heard opinions both ways....

> and I have been unable so far to persuade my UK NHS doctor to give

> me anything for my thyroid.

Grrr. And you'd probably get something out of it, too: many, if not

most, of us do.

The Canadian Criteria (IIRC) have a pretty good discussion of silent

thyroid -- how it happens, and the importance of treating it. If you

can find that and show it to him, perhaps you can get some movement

on this.

Sara

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Responding to , and making the same request to CS. I, too, have

been on a lot of supplements, some the same, some varied, for many

years (more than 8). My symptoms do not fluctuate dramatically, but I

still cannot tell whether supplements are making a difference or not,

with the exception of glucosamine sulfate, which has pretty much

alleviated joint pain, which pain returned some weeks after I once

stopped and went away again some weeks after restarting it. I

continue to take those I do more for the theoretical benefit they

have on body systems (like antioxidants, nattokinase, hawthorn

extract, etc.) than on symptoms getting better or worse. I really

have a hard time imagining how anyone can know when a supplement has

achieved maximum benefit or indeed tell if it has helped or harmed at

all, except in the case of an immediate allergic reaction.

>My symptoms have always fluctuated dramatically, I liken it to a roller

>coaster ride; there is no obvious reason why I feel a bit better one

>day and much worse the next- apart from the obvious times when I know I

>have tried to do too much.

>This variation in my symptoms, means that I am completely unable to

>tell, whether any of the dozen or so supplements I am taking, are

>having any beneficial effect or even otherwise;

> especially considering I have had ME for ten years now,

>and I have been taking supplements for fully 8 years-

> but I honestly dont feel any different now than I did before I started

>on these supplements; I dont feel any improvement and I have definitely

>not been cured.

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Bernie

I find the method I described below to be better absorbed and hence more

effective and then requiring lower doses.

Please remember that I indicated the method excludes gelcaps and enteric

coated tablets.

Most supplements can be purchased in powdered (bulk) form. That can be an

important money saving feature for those of us with marginal incomes and large

supplement needs. It saves the manfacturing costs of tabletting or capsule

filling.

Hope this clarifies things for you

From: " bernieanneca " BernieAnne@...

Date: Fri Apr 28, 2006 1:40pm(PDT)

Subject: Re: Help!! I'm drowning in supplements/pills!!

>

>

>

One thing you might want to consider is to put the tabs into the

coffee

grinder and powder them. Add that powder and empty any in capsules

into some

water, juice, applesauce, yoghurt. That leaves you with only

gelcaps and

enteric coated tabs to take.

***Hi MJH - This isn't good advice. There is a reason why some

supplements are in capsule form, and others a hard tablet. You should

never crush, grind, or chew a tablet as it can sometimes be absorbed

too quickly by the body. It is best to stick with the directions

given by the manufacturer.

Take care.

Bernie

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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>

>

>>

> Perhaps in YOUR experience, Bernie. This kind of absolute

declarative

> makes it sound like you expect everyone else's experience to be the

> same.

>

> That's an erroneous (and arrogant) assumption in most of life -- and

> especially in dealing with ME.

***Hi Sara - Back the truck up Lady!! This is not based on my

experiences, but on that of medicine. Common sense tells us that we did

NOT become deficient overnight, so therefore, we will not fix the

problem overnight.

When I hear of someone noticing a difference within hours, if not days,

that pretty much tells me that someone is experiencing a placebo

effect.

Take care.

Bernie

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>

>

>

> Bernie

>

> I find the method I described below to be better absorbed and hence

more

> effective and then requiring lower doses.

>

***Hi MJH - I'm not relying on personal experience, just by what I have

read over the years.

Take care.

Bernie

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Bernie,

Magnesium on the other hand can take anywhere from four

to six months to start noticing results.

*** Not sure where you got this info from, I took Magnesium and

Taurine injections (I had very very low MG status) and I felt a

noticeable difference after the second shot. My doc also told me that

the effect of IM Mg is instant.

I do agree though that in some cases there is a placebo effect.

Nat

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>

> Bernie,

>

> Magnesium on the other hand can take anywhere from four

> to six months to start noticing results.

>

> *** Not sure where you got this info from, I took Magnesium and

> Taurine injections (I had very very low MG status) and I felt a

> noticeable difference after the second shot. My doc also told me

that

> the effect of IM Mg is instant.

> I do agree though that in some cases there is a placebo effect.

>

***Hi Nat - I should have clarrified I was referring to oral

supplements. When I was researching about vitamin and minerals

supplements the one thing I learned was the fact that we don't become

deficient overnight and that it was unrealistic to expect instant

results. The one example used was magnesium and how it took much longer

for results than the majority of other supplements.

Like I've mentioned here before, I'm a real skeptic and I question

everything :-)

Take care.

Bernie

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Bernie, Bernie, Bernie,

Have you been in the ME/CFS, or any significant health world for very long?

These simplistic, declarative statements do not reflect it.

<<<<<This is not based on my experiences,<<<<<

then, please reconsider the " facts " you are passing on

>>>>but on that of medicine.<<<<

But " what " medicine? Have you not noticed in the news or on these lists that

" medicine " today and medical/drug facts broadcast ad infinitum... are often

dangerous, destructive lies... that originate from the interests of Insurance

and Pharmaceutical Mega Corporations??? Rather from actual responsible

researchers and patient outcomes?

>>>>Common sense tells us<<<<

" Common sense " is not Science. Little about our disease fits what any of us or

our physicians would have previously called " common sense " .

>>>>that we did NOT become deficient overnight, so therefore, we will not fix

the problem overnight.<<<<

Did anyone mention being fixed overnight? A significant result in a short time,

including overnight does not mean all is " fixed " .

Yet there are dramatic things that can be " fixed " *instantly*. A life

threatening drop in Electrolytes or Insulin (to near coma) are examples. An IV

or shot can instantly revive the patient from incoherent, near death,

semi-conscious or comatose to completely awake and " normal " .

Many other examples.

>>>>When I hear of someone noticing a difference within hours, if not days, that

pretty much tells me that someone is experiencing a placebo effect.>>>

Bernie, I would never say that every patient is going to have instant results

from every drug or treatment. And placebo effect can certainly happen too.

But to say that none will respond quickly , or that all are placebo effect is

patently false. This is from years and reams of 1st hand experience, eye witness

experience, and hundreds of patient and research accounts.

(And by the way, not soley ME/CFS)

Here, I am speaking of this thread...that is, " noticing a difference " , as you

stated, or positive or functioning results, feeling better, etc.

Total resolution or complete cure of underlying issues is a different topic.

This party line that things take X amount of time ( AND X dosage of the drug )

to work...I hear parroted from doctors and patients like robots, supposedly

based on hard science that THEY HAVE BEEN TOLD. But who, does it turn out do

these " facts " originate from? Doctors today (and patients in turn) mainly get

these facts directly from Pharmaceutical Salespeople and others on their

payroll, often sweetened with many percs.

(Again, watch the news, Congressional Hearings, Drug Recalls, and patient death

and destruction for the reliability of this source).

I also often experience side effects immediately, even one dose (other than

actual allergy). It has also been stated to me, by doctor that this is

impossible.

ME/CFS literature long ago used to refer to " exquisite sensitivity " to drugs.

This is absolutely my experience...from drugs and many wholistic treatments.

Sometimes from one quarter of less dose.

Immunopro at 1 teaspoon caused flu-like pain and hammered in one or 2 days. I

had to back down to 1/8th of a teaspoon, and work up slowly. (Other patients to

less!)

At which time I felt, functioned and looked better in a few days.

In my case, change of complexion color and swelling in face/limbs...worsened or

improved, are visual, physical signs that reflect what I " feel " in a short

time,as a result from many, many, many

pharmaceuticals and supplements ..in addition to instant heat and chemical

reactions.

Added to these signs are often, signs reflected in balance, cognition, spatial

judgement, ability to walk straight (or not), bump into things, or not,remain

vertical, tolerate light, noise, crowds, temperature change.

A Supplement and injection combo last year lessoned distinct cardiac symptoms

and actual angina type pain in 10 days.

Oh, Florinef enabled me to stand, hold conversation in group, and actually

multi-task in 10 days on it. I had not been able to do these things to this

degree for 4 years, no matter what I tried, or how much I wanted to, or believed

in what I was taking.

Overdoing it then landed me on injured back, and same but *somewhat* lessened

result when recovering.

Tons of other examples.

There are other short and long term effects that I miss...are subtle...or I'm

not sure of.

And some effects shift over time, shorter or longer. This has always been

reported in CFS patients I've known, and also has scientific explanations...but

not necessarily known by the local doc, or us, or fully understood

by anyone.

In other words, prepare to have your (like mine) belief system rocked to it's

very core.

Take care,

Katrina

> >

> >

> >>

> > Perhaps in YOUR experience, Bernie. This kind of absolute

> declarative

> > makes it sound like you expect everyone else's experience to be the

> > same.

> >

> > That's an erroneous (and arrogant) assumption in most of life -- and

> > especially in dealing with ME.

>

>

> ***Hi Sara - Back the truck up Lady!! This is not based on my

> experiences, but on that of medicine. Common sense tells us that we did

> NOT become deficient overnight, so therefore, we will not fix the

> problem overnight.

>

> When I hear of someone noticing a difference within hours, if not days,

> that pretty much tells me that someone is experiencing a placebo

> effect.

>

>

> Take care.

>

> Bernie

>

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Bernie

THat is not my experience with Magnesium. When I switched from Mg tabs and

caps to crushing them and dissolving in hot water, I felt an effect in a

couple of hours.

If it had been placebo, I would have had an effect many years earlier and

had less pain in that interim, too.

And, to further comment on Nat's note, when one has a heart attack and gets

to the ER alive, they are given Mg SO4 IV almost immediately.

Mg is water soluble, like the B vitamins.

mjh

From: " natposte " jazz62@...

Date: Fri Apr 28, 2006 8:28pm(PDT)

Subject: Re: Help!! I'm drowning in supplements/pills!!

Bernie,

Magnesium on the other hand can take anywhere from four

to six months to start noticing results.

*** Not sure where you got this info from, I took Magnesium and

Taurine injections (I had very very low MG status) and I felt a

noticeable difference after the second shot. My doc also told me that

the effect of IM Mg is instant.

I do agree though that in some cases there is a placebo effect.

Nat

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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On Apr 28, 2006, at 5:51 PM, bernieanneca wrote:

>> Perhaps in YOUR experience, Bernie. This kind of absolute

> declarative

>> makes it sound like you expect everyone else's experience to be the

>> same.

>>

>> That's an erroneous (and arrogant) assumption in most of life -- and

>> especially in dealing with ME.

>

>

> ***Hi Sara - Back the truck up Lady!! This is not based on my

> experiences, but on that of medicine. Common sense tells us that we

> did

> NOT become deficient overnight, so therefore, we will not fix the

> problem overnight.

That's absurd. There are all kinds of long-term deficiencies that are

resolved very, very quickly when the deficiency is remediated.

> When I hear of someone noticing a difference within hours, if not

> days,

> that pretty much tells me that someone is experiencing a placebo

> effect.

I'm sorry, I don't recall --

You got your medical degree where, again....?

(Not that it matters: if I found myself confronted with an actual MD

who spouted this kind of presumptuous nonsense, s/he'd be fired on

the spot.)

Sara

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On Apr 28, 2006, at 9:14 PM, bernieanneca wrote:

> Like I've mentioned here before, I'm a real skeptic and I question

> everything :-)

Including the actual experience of other people -- people you don't

know, haven't met, and aren't qualified to make a medical judgement

on anyway.

On the other hand, you seem perfectly willing to believe everything

you read, and regurgitate it freely as gospel, despite anyone else's

experience to the contrary.

Which makes me wonder what you're doing here on this (presumably non-

credible) list, while there are so many books out there you could be

gleaning for truly credible information.

Cut me a break.

Sara

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>

> > Like I've mentioned here before, I'm a real skeptic and I question

> > everything :-)

>

>

> On the other hand, you seem perfectly willing to believe

everything

> you read, and regurgitate it freely as gospel, despite anyone

else's

> experience to the contrary.

>

> Which makes me wonder what you're doing here on this (presumably

non-

> credible) list, while there are so many books out there you could

be

> gleaning for truly credible information.

***After having CFS for 15 years now, I certainly don't believe every

thing that I read, however, like I said, I don't believe that trying

something for one to two weeks is long enough. If we all gave up that

quickly, CS and certainly wouldn't have discovered that Whey

Protein was right for them. And as far as vitamins are concerned, it

takes more than a week or two to become deficient, and with the

exception of possibly Vitamin C, taking oral supplements is going to

take more than a week or two to build up in the body. Even a lot of

prescription meds take longer than a week or two to be effective.

As to why I am here, I'm trying to learn as much as I can from Rich

and people like CS and who are having success raising their

Glutathione levels. I personally question most things, rather than

blindly following along.

Take care.

Bernie

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On Apr 29, 2006, at 11:40 AM, bernieanneca wrote:

>

> ***After having CFS for 15 years now, I certainly don't believe every

> thing that I read, however, like I said, I don't believe that trying

> something for one to two weeks is long enough. If we all gave up that

> quickly, CS and certainly wouldn't have discovered that Whey

> Protein was right for them. And as far as vitamins are concerned, it

> takes more than a week or two to become deficient, and with the

> exception of possibly Vitamin C, taking oral supplements is going to

> take more than a week or two to build up in the body. Even a lot of

> prescription meds take longer than a week or two to be effective.

That is true for many people -- including many with CFS. But, as Katt

wrote, it's very well-established that PWCs are extremely sensitive

to many substances, prescription and otherwise.

Don't take my word for it. Go read Cheney, or the Canadian Criteria.

Given the number of books you claim to have read, I'm frankly

surprised you don't already know this.

> As to why I am here, I'm trying to learn as much as I can from Rich

> and people like CS and who are having success raising their

> Glutathione levels. I personally question most things, rather than

> blindly following along.

Bernie: remember, I'm one of the few people here who actually

achieved an 85% recovery after 28 years with the disease.

The odds of anyone getting this well after being sick that long are

in the low single digits -- the place where the word " miracle " starts

to apply.

Beyond that, for several years at the beginning of my illness, I was

the sportsmedicine editor for a major national women's magazine. (In

fact, this was the job that had me making frequent trips to Lake

Tahoe through '84 and '85.) Which means I have some real chops when

it comes to finding and understanding the science; and further

suggests that I might also have acquired a useful clue or two about

how this thing works.

However, one mistake I'd never make is to insist that something

couldn't possibly have worked for somebody -- or accuse them of being

subject to " placebo effects " (nice touch -- why don't you just go to

work for Wesseley?) -- when their own experience proves that it did.

That's not only arrogant in the extreme; it's also the kind of

intellectual sloppiness that will (as Kattemayo pointed out in her

most excellent post) blind you to many potentially useful options.

Sara

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Hi

This is what cracked it for me:

MY regime:

1 - 3 months - exclusively took Whey Protein on its own once a day.

4th month - I took Lactoferrin for 4 weeks to clear out parasites

alongside Whey protein -- ie Whey protein in the morning and lactoferrin

in the

evening,

5th month - I took Salt for 4 weeks to build up adrenals alongside

Whey protein -- ie Whey protein in the morning and salt in the evening,

6th month - I took Licorice for 4 weeks to build up adrenals alongside

Whey protein -- ie Whey protein in the morning and licorice in the evening,

7th month - I took Coconut oil for 4 weeks to kill off yeast infection

alongside Whey protein -- ie Whey protein in the morning and Coconut oil

in the evening

8th month - I took Manuka Honey for 4 weeks to kill off any bacterial

infection ie h pylori infection alongside Whey protein -- ie Whey protein

in the morning and Manuka Honey in the evening

9th month - I took probiotics for 4 weeks and continually to build up

good bacteria alongside Whey protein -- ie Whey protein in the morning and

probiotics in the evening

10 month - I plateaued on Whey Protein - I took Turmeric for 4 weeks with

OPC's in the evening - with Whey protein in morning

11 month - Im taking Coriander and Garlic for 4 weeks with OPC's in evening

- with Whey

protein in the morning

12 month Maintenace- Im taking Vitamin C, EFAs - coconut oil / Olive oil /

butter, Concentrace Magnesium, OPC's, Zinc and Co Q10 alongside Whey protein

, Turmeric, Coriander & Garlic, Chlorella, Probiotics.

My Regime:

1) HEAVY METALS & THYROID - " Whey Protein Isolate " & " Turmeric " &

Coriander

2) PARASITES/FUNGAL/BACTERIAL - Lactoferrin/ " Coconut oil " / Manuka

Honey

3) ADRENALS - Salt / Licorice

4) DIGESTION - " Probiotics with Citrus Pectin / Bromelain

enzyme "

5) NUTRIENTS - " OPC's " / Vitamin C/ EFA's/ Chlorella / Concentrace

Magnesium/ Zinc and Co Q10.

DIET - no wheat/ limited dairy / limited fruit / Butter &

olive

oil and flax oil / Veggies & Salads/ Rice / Yoghurt / Plant

extract & herbs &

spices

Regards

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Hi, old friends and new ones, too.

Checking in on this topic before I read any of the other responses.

First, let me say, I don't spend much time here on this forum anymore,

because the right supplements have gotten me so much better that I am too

busy-including some gainful employment- to hang out here. (So if you want to

communicate w. me, please cc me backchannel. I will respond to anyone and cc

the forum.)

Yesterday, just to get out of the ancient grim mode of nothing but survival,

I went and auditioned for a place in a new theater company. My lack of

training showed, but now I am considering classes. This is all in the realm

of miraculous, based on how pitifully bad off I have been for so long.

I am not cured, I am not even well, I still require time in bed AND a

caregiver, but I have a life, and I guess I need to adapt to this level

before trying for higher. I am now 67 and have been seriously sick for over

20 yrs. I don't see much sign that I will ever be free of needing

supplements. Like I said, I am not cured, just more functional- and I am

sure most will understand when I say that is a big deal.

I will cut to the chase; the most recent addition that has made so much

difference is the brain-balancing formulas from Neuroscienceinc.com, where

my doc steered me. Before that, Pituitrophin from Standard Process gave me a

boost, and before that homeopathic growth hormone. Underlying all that is

b12 injections.

There is more, but let me say, that with the subtler supplements I have

needed a combination of approaches to see if they are working. Very time

consuming, but at first all I could do when I thought something was working

was to stop it for awhile, and then, if I seemed worse without it, start it

again.

When I mistakenly stopped magnesium once, because I thought it was hurting

my stomach, I lost ground seriously; mentally and muscle strength. Took

literally years to get built up again.The only reason I knew it was the

magnesium was 'cause I was seriously scared at how weak I was getting, and I

prayed, and I heard an inner voice telling me to return to taking it, and I

immediately knew I was hearing the truth and I took some, and the symptoms

started to abate almost immediately-within days. So, one way to know about

your supplements is to cultivate the ability to hear and believe your inner

voice or intuition or whatever. Myself I find it real helpful to have God.

I am also a half- assed practioner of Vipassana meditation, which taught me

how to stay more aware of what I was actually experiencing in my body. This

has been helpful overall.

As far as antioxidants go, with the exception of vit c, I take those on

principle without being able to discern any benefit. C was a mainstay for me

for many years, and recently, realizing my immunity was working well, I

backed off it. Long story short, I discovered that it had also been keeping

very painful inflammation in my ankles in check, and as soon as I got back

on it the pain quit.

I can tell the benefit of the following;

chromium mitigates my sugar cravings,

multi's, esp. Propax give me energy

zinc works for sore throats, as does osha, an herb.

licorice is great for acid reflux.

My digestive enzymes, come to think of it, were a major boost. Goodbye bloat

and worse.

Antronex works for Spring allergies.

There may be more, but they are in the other room.

I may even be well enough soon to move to a different city. I've been stuck

here since the '80's. I can't believe that I am well enough to at least

imagine doing that. It was unimaginable for so long:-)

Adrienne

Help!! I'm drowning in supplements/pills!!

Responding to , and making the same request to CS. I, too, have

been on a lot of supplements, some the same, some varied, for many

years (more than 8). My symptoms do not fluctuate dramatically, but I

still cannot tell whether supplements are making a difference or not,

with the exception of glucosamine sulfate, which has pretty much

alleviated joint pain, which pain returned some weeks after I once

stopped and went away again some weeks after restarting it. I

continue to take those I do more for the theoretical benefit they

have on body systems (like antioxidants, nattokinase, hawthorn

extract, etc.) than on symptoms getting better or worse. I really

have a hard time imagining how anyone can know when a supplement has

achieved maximum benefit or indeed tell if it has helped or harmed at

all, except in the case of an immediate allergic reaction.

>My symptoms have always fluctuated dramatically, I liken it to a roller

>coaster ride; there is no obvious reason why I feel a bit better one

>day and much worse the next- apart from the obvious times when I know I

>have tried to do too much.

>This variation in my symptoms, means that I am completely unable to

>tell, whether any of the dozen or so supplements I am taking, are

>having any beneficial effect or even otherwise;

> especially considering I have had ME for ten years now,

>and I have been taking supplements for fully 8 years-

> but I honestly dont feel any different now than I did before I started

>on these supplements; I dont feel any improvement and I have definitely

>not been cured.

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.

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