Re: A Natural Approach. Anyone?

[Guest guest]

I always find it bizarre when this list gets classified a drug list and

people assert that nobody uses natural remedies here. I don't know of anyone

on this list who DOESN'T use natural remedies of some kind, and who hasn't

sampled a wide range of natural remedies. Am I wrong?

Many supplements are discussed here, and many alternative treatments are

discussed. Dietary changes (yeast free diets, raw foods diets, nutritional

approaches) are routinely discussed. I personally used nothing but

nutritional and alternative medicine approaches to CFIDS for several years,

until those failed me and I began to integrate drugs into my treatment

methods. Jim, I suggest you search the archives under specific topics (bee

sting therapy, acupuncture, magnesium, b12, probiotics, etc.) to find

information on these topics.

Peggy

<<If there is no one in this forum experimenting with natural

approaches, maybe this group would be more appropriately named

CFSFMDrugExperimental.>>

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome:

http://www.angelfire.com/ri/strickenbk

[Guest guest]

Jim, it is true my better period now has matched when I take a daily

drink made in my Vitamix machine. I have spoken to others who have a

Vitamix and don't even use it. It is a $400 super blender basically

and I'm glad I bought it. Makes killer margaritas too (as my roomate

learned when he made some for the Jimmy Buffet concert two weeks

ago). I typically put one of every fruit variety, so long as it will

fit, and then even vegies such as a little brocolli or califlour or a

carrot and 3 raw eggs (I buy the more expensive eggs so as to

hopefully lower chances of salmonella--free roaming eggs are best), 1

tbs honey and 1 tbs cocoa, dozen ice cubes and then I take my time

drinking it and actually chew it in mouth to mix enzymes in it. I

too make sure I have plenty of filtered water every day. I have also

gotten better when I stopped taking my multivit/min and used the

Vitamix to replace what I don't get and also take the liquid minerals

from the Salt Lake and only vits I take is Vit A from fish liver oil

(natural substance) and B complex (which perhaps I could drop but not

willing to take the chance right now). Perhaps I have restored

metabolism by working out? As for gut flora I did take Primal

Defense but I never worked up to more than 3 in a day (just for cost

reasons, not due to intollerance) and am not even taking taking any

right now. Sounds like you have winning simple plan there.

>

> Is there anyone in this group experimenting with more natural

> remedies to reverse CFS/FMS? If so, I would sure like to hear what

> you are doing and the results that you are seeing.

>

> The approach that I think will help reverse symptoms of CFS/FMS,

> supported by the positive results obtained by the few people that

> have followed this approach, is:

>

> 1. Hydrate the body.

>

> 2. Increase metabolism.

>

> 3. Restore vitamin and mineral deficiencies.

> (using food sources, not synthetic vitamins in pill form.)

>

> 4. Restore health to intestinal flora.

> (probiotic supplementation may or may not be needed.)

>

> Not one of the people that have found positive benefits taking this

> approach has found it necessary to inject vitamin B12, they did not

> require prescription medications to do it (those prescribed meds by

> their doctors slowly weaned themselves from them.), they did not

need

> to inject growth hormone or any other kind of hormone, they did not

> require massive amounts of vitamins or supplements, they did not

> follow an extreme antibiotics program ...

>

> If my understanding of this condition is accurate, and I am

confident

> that it is, any approach that does not have an objective of

restoring

> health in ALL 4 areas listed above, will likely not be successful

in

> reversing CFS/FMS. (IMO)

>

> If there is no one in this forum experimenting with natural

> approaches, maybe this group would be more appropriately named

> CFSFMDrugExperimental.

>

> All the best,

> Jim

[Guest guest]

Oops, forgot to add that I do take 1 tbs Perfect Food in morning with

couple tbs apple cidar vinegar and the PF has some probiotics in it

as does the Goatein I take (also 1 tbs mixed in). Can't go wrong

with those two supplements and the vinegar is supposed to be good for

the gut.

[Guest guest]

Jim, if you really read this list everyday instead of just hopping on now trying

to sell you products, then you would know that many people on this list do

numerous natural things, and in fact many cannot take drugs at all. People try

diet, supplements, meditation, numerous things. On the other hand, despite

spending about $10000 in the past years on natural supplements, none of that has

made any difference in my condition, whereas there are drugs and things like B12

which get results. I find your tone and inferences to be insulting.

Doris

----- Original Message -----

From: thmicom <clements@...>

If there is no one in this forum experimenting with natural

approaches, maybe this group would be more appropriately named

CFSFMDrugExperimental.

Jim

[Guest guest]

I have been trying to use natural remedies to treat my CFS, and natural or

alternative medicine therapies have been my primary focus. And for the

record, I do include the 4 things you listed below, but they weren't even a

drop in the bucket for dealing with problems, and didn't come anywhere near

resolving my CFS, or even to stop my downward progression.

So, to discuss the four things you mentioned, let me go through them here:

There is a fine balance in CFS between hydrating the body, and loosing

electrolytes from over hydration. I've gone through the " drink lots of

water " recommendations, like the recommendations by Dr. Day, and it

created havoc, because the more water I drink, the more electrolytes I

loose. It becomes impossible to replace the lost electrolytes and be able to

maintain intestinal pH. In other words, the more water I drink, the more

magnesium, and potassium (and sometimes sodium) I need to take, and it can

reach a point where the alkalizing effects of the magnesium and potassium

cause irritation in the intestines, interfering with intestinal health. At

some point, I would have to resort to IV's or injections in order to get

adequate amounts, and I can't tolerate the anesthetics that they add in

order to cope with the burning pain that injections create, and I can't get

any local doctors to consider doing frequent IV's, which creates other

problems for me as well. The effects that I have when I loose too many

electrolytes are evident not just from my physical symptoms, but also show

up in my biofeedback therapy. When I drink more than 2 quarts of water a

day, my brain wave activity drops too low for the computer to pick up

because my electrolytes become too watered down. If I drink too much water,

I develop heart arrhythmia's. Drinking pedialyte or sports drinks doesn't

make a big enough difference. I take 1600 mg. of different forms of

magnesium, and take potassium supplements daily. And at that level, I can't

tolerate any more without creating intestinal problems. I agree that a

person has to drink enough water to be able to remove toxins and waste from

the system. But the line between enough and too much is not the same for

every person, and what helps one person can have a detrimental effect on

another, and many people (at the recommendation of alternative doctors who

fail to see the whole picture) over do water, thinking they are doing

something good for themselves, without realizing that too much water can be

as bad as too little, as I unfortunately found out.

The second issue is restore vitamin and mineral deficiencies. I've gone

through a lot of experimentation between my naturopath and myself in an

effort to restore vitamin and mineral deficiencies. But there are some

problems, because while some things are needed, they can actually end up

exacerbating symptoms because they feed intestinal pathogens or stimulate

viral reproduction, or cause other problems. For example, I have a problem

absorbing B vitamins, so I have to take them in larger than normal

quantities. But B vitamins stimulate the production of candida and many

pathogens. I use orthomolecular levels of many nutrients in an attempt to

raise deficiencies, and sometimes it doesn't matter how much I take. My

bodies ability to use those nutrients is compromised. And quite frankly, I

take more than 130 pills a day, and it gets to a point where I get tired of

swallowing pills! And there are so few liquid supplements that I can

tolerate that I am stuck taking pills.

Increasing metabolism can be a very complex issue. I have low thyroid, but I

don't tolerate thyroid supplementation or homeopathic or naturopathic ways

of altering it. It triggers heart arrhythmia's, as though it is pushing me

into hyperthyroidism. I've tried supplements to increase metabolism, and

just about everything I've tried I've had major adverse reactions to. I

understand that the adrenals also have to be supported, but I have major

adrenal problems that I'm finding very difficult to address using

naturopathic means, in part because not only are my adrenals having

problems, but I seem to have some sort of feed-back loop defects in the HPA

axis, that my naturopath and I haven't been able to resolve. Do things to

strengthen my adrenal glands and it ends up being translated into overactive

adrenal function. Do things to address metabolic problems, and it

exacerbates adrenal problems. It's a vicious cycle. It's more complicated

than that, but I hope I get the idea across.

My problems are complicated because I have MCS and IBS which I have to work

around. I ultimately had to resort to using antibiotics to get some control

over the IBS because my naturopath and I went through the whole gamut of

natural things that we could do to control it, and none of it worked. The

antibiotics made a HUGE difference. About a year ago I became desperate

enough that I resorted to trying some antidepressants, and it was a huge

mistake, and I'm still struggling with the damage that they caused. Over the

years I've tried a number of different medications with disastrous results

every time, so I've become very anti-western medicine. But I haven't been

able to completely divorce myself of it even with the concentrated efforts

of my naturopathic doctor and my bioneurofeedback therapist, and my

BioSET/NET practitioner.

I do take a prescription antihistamine (Allegra) because I became so

hypersensitive to everything in spite of all the immune modulators and

natural treatments that in order to avoid life-threatening situations I had

to take more drastic steps to reduce my reactivity. It's the one unnatural

medication that I take regularly. I'm going through BioSET treatments to try

to reduce the reactivity, and it has helped. But it is a long and slow road.

I've tried some short cut treatments, and they majorly backfired. (For

example, a previous bioset practitioner tried using NMT on me, and it made

me worse, rather than better.) I do a lot of immune modulating supplements

to try to reduce the reactivity, and while they help somewhat, they fall far

short of resolving anything enough to avoid life-threatening reactions. Even

with the Allegra I still struggle with inflammation of my esophagus, hives,

and asthma several times a week, and that's with me being very careful of

what I eat and what I come in contact with. I'm still struggling to try to

balance all of this - adrenal and other hormone imbalances, allergies,

nutrition, diet, and the myriad of other symptoms that I struggle to

control.

I DO have to use injectable B12, even though it is a prescription. I look at

it as being natural, even though it is being delivered in an unnatural way.

It is as natural as some of the other supplements that I take, more so than

others. But I have a lot of burning skin and muscle pain, and the B12

injections are the ONLY thing I've found that alleviates it. (and I've tried

a lot of things) And I can't live in a constant state of pain for very long

before it begins to affect me in psychological and physical ways. I've

learned the lesson the hard way that pain control has a huge impact on

symptoms.

I have low stomach acid, and take Betaine HCL with meals, as well as

digestive enzymes. But that doesn't seem to be enough to adequately absorb

enough B12 to achieve the same results as injections, and because I've had a

past history of ulcers, I have to be careful with the HCL and digestive

enzymes. (Ultimately, it took the antibiotics to heal my ulcers, as well,

but I have a precarious balance in keeping them away) When I try to decrease

the B12, the neuropathy in my feet gets worse. And nothing natural that I've

tried has made any difference except for the B12 injections.

I spend about $1200 to $1600 a month on supplements. None of it is covered

by my insurance. Each thing I take has been added slowly, one at a time,

with a lot of input from my naturopath, a lot of research of my own, and a

lot of experimentation and a lot of patience to wait for things to work.

Some things I haven't been able to try because of allergies. But I still

have gone though hundreds of different supplements that didn't work out for

me. In spite of all of this, I have had a slowly downward progression. And

I've had to add the antihistamine and an occasional pain killer to

compensate for what I have been unable to address through natural means, and

I am not functioning well enough to lead any semblance of a normal life. The

list of things I've tried is miles long, too long to list. Every fad that's

come out, like Mannatech products, Aloe vera, Monolaurin, Olive leaf

extract, etc., I've tried.

I'm currently planning on trying some other things, though, not giving up

hope. I ordered some Indium to try. It is supposed to increase absorption of

nutrients, and increase growth hormones and stabilize hormonal imbalances,

etc. I'm hoping that it will at least help but we'll see. And my husband and

I have decided that I should try the treatments from the International

BioCare Hospital down in Mexico, which includes naturopathic, acupuncture,

and other alternative medicine therapies, as soon as we can afford it. But

the primary thing I'm interested in is the Life Cell Therapy that they do,

which is a form of fetal bovine stem cell therapy. I've talked with some

local PWC's who went down there and are for all intense purposes in total

remission, and I've done some digging around into their treatments, and most

of it sounds like it has some potential. Even if it doesn't cure me, if it

helps, I'll take any improvement I can get.

At this point, none of the things you listed made any kind of dent in my

problems. I've spent 10's of thousands of dollars experimenting with natural

things, under the care of a naturopath who is very open minded, very

knowledgeable, and very professional, and with the help of other alternative

medicine practitioners. I know of people with CFS and FM who have been able

to do simple things to get over their CFS or FM, such as eating a vegan

diet, Eat Right for Your Blood Type diets, or doing colonics, or mercury

detoxification, and while I've tried those things, they didn't work for me

(and in fact made things worse). I think that the things you discussed

should probably be among the first things that a PWC tries, but it isn't a

cure-all for every PWC, as I've unfortunately found.

I don't know why some of us have more complicated problems than others. I

don't know why what helps one doesn't help another. Maybe it is because we

have different pathogens, or maybe different systems of the body are

affected more than others differently in different PWC, or maybe there are

different precipitating circumstances contributing to our problems, or maybe

there are too many different disorders all lumped under the same umbrella of

CFS, or something entirely different. But whenever someone starts promoting

one particular treatment or theory for CFS, most of the time I find myself

getting irritated, (there have been a few circulating theories that seem to

have some semblance of truth to them, like Pall's theories and Rick

Van Konynenburg's theories) For the most part, I've seen it repeated over

and over, with every person who comes up with something thinking that it is

the final answer for all PWC's, or even assuming that it's the final answer

for most. It's just too complicated and individualistic for blanket

assumptions. It doesn't hurt to recommend those things to try. Maybe some

lucky person will find that they're the answer for them. But when you stated

" The approach that I think will help reverse symptoms of CFS/FMS...is "

turned me off cold, since the things you recommended where things I

religiously followed, and was disappointed with, and you made a blanket

statement, proposing that they would reverse CFS/FMS without any

accommodations for recognizing that not everything works for everyone,

making your statement a little on the arrogant side.

lindaj@...

A Natural Approach. Anyone?

>

> Is there anyone in this group experimenting with more natural

> remedies to reverse CFS/FMS? If so, I would sure like to hear what

> you are doing and the results that you are seeing.

>

> The approach that I think will help reverse symptoms of CFS/FMS,

> supported by the positive results obtained by the few people that

> have followed this approach, is:

>

> 1. Hydrate the body.

>

> 2. Increase metabolism.

>

> 3. Restore vitamin and mineral deficiencies.

> (using food sources, not synthetic vitamins in pill form.)

>

> 4. Restore health to intestinal flora.

> (probiotic supplementation may or may not be needed.)

>

> Not one of the people that have found positive benefits taking this

> approach has found it necessary to inject vitamin B12, they did not

> require prescription medications to do it (those prescribed meds by

> their doctors slowly weaned themselves from them.), they did not need

> to inject growth hormone or any other kind of hormone, they did not

> require massive amounts of vitamins or supplements, they did not

> follow an extreme antibiotics program ...

>

> If my understanding of this condition is accurate, and I am confident

> that it is, any approach that does not have an objective of restoring

> health in ALL 4 areas listed above, will likely not be successful in

> reversing CFS/FMS. (IMO)

>

> If there is no one in this forum experimenting with natural

> approaches, maybe this group would be more appropriately named

> CFSFMDrugExperimental.

>

> All the best,

> Jim

[Guest guest]

, your drink sounds very nutritious. One suggestion, get rid of

the ice. Any cold foods that you eat requires heat to bring it to

temperature for digestion, heat requires energy, something that is in

short supply, so, best to conserve it wherever possible.

Maybe also reduce the number of sweet fruits, especially if dealing

with any candida. More vegetables especially sodium veggies like

celery and spinach.

The primal defense is a good product, but very expensive; especially

in the numbers that the company suggests that you take. I have been

using the flora source product but I think any high count (we're

talking 10 - 15 billion) acidophilus probiotic should be good. Most

of those are going to be destroyed enroute. If the idea does not

creep you out implants via the back door are supposedly beneficial.

If you can tolerate sweet dairy whey put 5 - 6 tablespoons of that

into your daily diet. The lactose feeds the beneficial bacteria.

All the best,

Jim

> >

> > Is there anyone in this group experimenting with more natural

> > remedies to reverse CFS/FMS? If so, I would sure like to hear

what

> > you are doing and the results that you are seeing.

> >

> > The approach that I think will help reverse symptoms of CFS/FMS,

> > supported by the positive results obtained by the few people that

> > have followed this approach, is:

> >

> > 1. Hydrate the body.

> >

> > 2. Increase metabolism.

> >

> > 3. Restore vitamin and mineral deficiencies.

> > (using food sources, not synthetic vitamins in pill form.)

> >

> > 4. Restore health to intestinal flora.

> > (probiotic supplementation may or may not be needed.)

> >

> > Not one of the people that have found positive benefits taking

this

> > approach has found it necessary to inject vitamin B12, they did

not

> > require prescription medications to do it (those prescribed meds

by

> > their doctors slowly weaned themselves from them.), they did not

> need

> > to inject growth hormone or any other kind of hormone, they did

not

> > require massive amounts of vitamins or supplements, they did not

> > follow an extreme antibiotics program ...

> >

> > If my understanding of this condition is accurate, and I am

> confident

> > that it is, any approach that does not have an objective of

> restoring

> > health in ALL 4 areas listed above, will likely not be successful

> in

> > reversing CFS/FMS. (IMO)

> >

> > If there is no one in this forum experimenting with natural

> > approaches, maybe this group would be more appropriately named

> > CFSFMDrugExperimental.

> >

> > All the best,

> > Jim

[Guest guest]

Peggy, I agree. Even someone like me who is using longterm antibiotics would

be in the category of using MANY natural products.

a

> I always find it bizarre when this list gets classified a drug list and

> people assert that nobody uses natural remedies here. I don't know of

anyone

> on this list who DOESN'T use natural remedies of some kind, and who hasn't

> sampled a wide range of natural remedies. Am I wrong?

>

> Many supplements are discussed here, and many alternative treatments are

> discussed. Dietary changes (yeast free diets, raw foods diets,

nutritional

> approaches) are routinely discussed. I personally used nothing but

> nutritional and alternative medicine approaches to CFIDS for several

years,

> until those failed me and I began to integrate drugs into my treatment

> methods. Jim, I suggest you search the archives under specific topics

(bee

> sting therapy, acupuncture, magnesium, b12, probiotics, etc.) to find

> information on these topics.

>

> Peggy

>

>

> <<If there is no one in this forum experimenting with natural

>

> approaches, maybe this group would be more appropriately named

>

> CFSFMDrugExperimental.>>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome:

> http://www.angelfire.com/ri/strickenbk

>

> 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.

>

>

[Guest guest]

,

Thank you for your detailed response. I apologize if I came across

as sounding arrogant. What you interpreted as arrogance was only

frustration, aggravation, and stress. Anyway, you bring up some good

points and I'd like to make a few comments.

Hydrating the body.

There is a risk of depleting electrolytes with too much water

consumption. Here in SLC,UT there was a little girl whose parents,

taking the suggestion of an alternative practitioner, forced their

daughter to drink water. The parents reported that the girl was

physically resisting them making her drink. The amount, shown on TV

news, was a pint of bottled water. The girls electrolyte levels were

so severly depleted that she died. So there is a very real danger of

drinking too much water. I think that the body will tell you when

you are near that point. You should not have to force yourself to

drink water.

I am not suggesting a person drink large quanitities of water. For

the average person 2 quarts of water a day is probably sufficient,

maybe a little more for a person with a larger body. I suggest an

additional 2 quarts on the days that a person saunas.

Too much water drinking can deplete electrolytes.

The first thing that I drink in the morning is a glass of water, not

too cold. About 30 minutes later I will eat or have a breakfast

drink.

The body does not actively absorb water. The body absorbs sodium and

water is pulled in along with it. (A number of the nutrients carried

into the cell are delivered in a similar manner, they are moved in as

sodium moves into the cell.) So, hydration would include sodium

intake since that is a factor in absorption of water into the body.

You mention taking a potassium supplement. Too much potassium can

deplete sodium levels. The suggested potassium to sodium ratio in

the diet is about 2:1. Approximately 90% of the potassium that is

taken in is excreted from the body in the urine, carrying out acidic

metabolic waste along with it. Sodium is reabsorbed into the blood.

The foods recommended by Bernard Jensen for sodium, also have good

amounts of potassium, celery, okra, whey... The article on my website

at

http://www.xmission.com/~total/temple/Soapbox/Articles/sodium.html

lists other foods. Dulse and Kelp, contain iodine which is needed

for the thyroid so adding them to the diet is a good idea, use of the

granulated form added to soups for seasoning is an easy way to

include these foods.

Per Bernard Jensen, it takes about 3 months to restore sodium levels

in the body through proper diet. Sodium helps to maintain calcium

levels in the blood. When sodium becomes too low then calcium falls

out of solution and forms deposits in the body. Arthritis is a

condition which requires more sodium from food sources. (Note: He

does not recommend the use of table salt.)

The sweet dairy whey is suggested for its sodium content. Sodium has

beneficial affects on the health of the intestinal flora and HCL

production in the stomach. (per Bernard Jensen)

Another thing about low blood sodium levels is that to keep sodium

levels up in the blood it is taken from the gall bladder; A major

mineral in bile is sodium. As sodium is taken from the gallbladder,

the formation of gall stones may start as cholesterol becomes more

concentrated in the bile and water from the bile leaves with the

sodium.

Back to hydration issues. Eat more liquid foods, soups, herbal

teas. A heaping TBLS of sweet dairy whey in hot water makes a good

drink. Warm or hot is better than cold to conserve heat energy in

the body. Avoid diuretics such as caffeine and alcohol.

Vitamin/Mineral Deficiencies

These nutrient deficiencies are in part due to the low hydrochloric

acid production. I think that there is a link between the intestinal

flora and HCL production, it may be the B vitamins that the bacteria

synthesize that is the connection. In the book " The Complete Book of

Minerals for Health " (out of print) it reports that a couple of the

B's are required for HCL production.

When a baby is born, its stomach does not produce acids for a few

weeks. I suspect that this allows an unhindered passage of the

bacteria in the milk to reach the colon. Or there may be some

connection to the colosterum which is present in the mothers milk for

the first week or so. Anyway, something happens that then causes the

infants stomach to start producing acid.

An increase in B vitamin foods is suggested to compensate for the B's

not being produced by a healthy intestinal flora. When health is

restored a person can probably cut back to the RDA levels

(recommended dietary allowance) for this vitamin. My guess is that

when the RDA was determined for B's, the amount produced by the

intestinal flora was not taken into account, through experimentation

it was determined how much additional B's were needed in the diet to

make up the difference.

Key to restoring vitamin and mineral deficiencies is restoring

production of HCl production in the stomach. Until that is done, a

person can be eating a very healthy diet and not get the nutrients

that are contained in the foods.

Metabolism

The thyroid, adrenal, and pituitary hormones can all signal in

increase in metabolism. This is not the same as an actual increase

in metabolism. I suspect that the exhaustion of these glands is due

to constant signaling to increase metabolism.

An analogy can be made to a house thermostat. You can turn up the

thermostat which then signals the furnace to come on. If the furnace

is faulty, the house will not heat, no matter how high the thermostat

is raised.

Many people with CFS/FMS are hypothyroid, many test fine for thyroid

function. The problem is at the furnace, not the thermostat. In

this case the furnace is the aerobic processes in the mitochondria

that produce ATP that is then used to heat the body. Since ATP

production is low, core body temperatures are lower.

Body temperature is a better indicator of metabolism. That is where

the use of the FIR heat comes in to raise body temperature,

increasing metabolism. Metabolic rate increases by 15% for each

degree C. increase in body temperature (about 2 degree F.).

The hormones produced in the thyroid, adrenal, pituitary, and other

glands & organs, are built using amino acids. If you look in the

bioterrain analysis of several people with CFS/FMS you will see that

low amino acid levels are common.

http://www.xmission.com/~total/temple/Soapbox/Articles/bioterrain.html

Is it possible that people have low thyroid, adrenal, or pituitary

hormone output because the resources are not there to build the

hormone? The glands have exhausted the resource with constant

signaling to turn up the heat. If this is the case, it points back

to problems with digestion and absorption of nutrients to restore

hormone output. This still does not address the problems with lack

of fire in the furnace.

Due to low metabolism, body temperature is low. When the body

temperature drops below 37C (98.6F) sweating is blocked. Sweating is

an avenue of eliminating metabolic waste from the body. Sweating

takes a load off the liver for keeping the body detoxified. Another

benefit of FIR sauna is the improved sweating at a low temperature.

You mention esophogus inflammation. Is this the result of acid

reflux? You may be interested in what I've written at

http://www.xmission.com/~total/temple/Soapbox/Articles/acidreflux.html

When the stomach pH gets down to about 2pH, this signals the release

of a hormone, cck ?, which then signals the stomach to stop producing

gastric juice. If the stomach pH does not get low enough, this

hormone is not produced and the stomach keeps generating juices,

eventually producing a reflux condition.

Injecting vitamin B12 is safe. I've not found anything reporting

problems with too much. Being a water soluble vitamin, B12 easily

flushes from the body. B12 is normally stored in the liver, which

typically has a 3 - 4 year supply of the vitamin. With the levels of

B12 that are being injected, if the vitamin were being stored in the

liver one would expect the effects of the injection to last much

longer than people are finding the effects to last. Maybe it is lack

of intrinsic factor on the injected B12 that prevents the liver from

storing it.

Betaine HCL supplementation will not assist in absorption of B12

because that product does not contain intrinsic factor. Intrinsic

factor is released by the parietal cells, the same cells that produce

HCl. One thing about supplementing HCl is that the acid must be

neutralized by pancreatic juices to safely pass through the

intestines, the small intestine has a slightly alkaline pH. So

continued use of supplemental HCl may cause a depletion of sodium

over time.

Probiotics

For some people supplementation of a good probiotic may be needed.

But if the diet is not feeding the good bacteria then it can not

thrive. Also, low HCl production will throw off the pH along the

digestive system, also making it difficult for intestinal flora to

flourish.

Granted you have tried many things, but from what you have posted I

have not seen that you have tried the approach that I've suggested

that has helped others. I agree that there is likely going to be

some people that may not respond as well as others have to this

approach. But, from what I can see in your post, you have not tried

what I suggest as something that may help. You've got water intake

covered. But, Do you have a high organic sodium diet to feed

beneficial bacteria, and maintain proper hydration? Have you used FIR

sauna to increase metabolism and detox? Do you use food sources for

all the vitamin and mineral needs of your body, especially B vitamins

and nutrients required for building the blood?

If anyone in this forum has taken this specific approach, It would be

nice to hear their experience.

All the best,

Jim

> I have been trying to use natural remedies to treat my CFS, and

natural or

> alternative medicine therapies have been my primary focus. And for

the

> record, I do include the 4 things you listed below, but they

weren't even a

> drop in the bucket for dealing with problems, and didn't come

anywhere near

> resolving my CFS, or even to stop my downward progression.

>

> So, to discuss the four things you mentioned, let me go through

them here:

> There is a fine balance in CFS between hydrating the body, and

loosing

> electrolytes from over hydration. I've gone through the " drink lots

of

> water " recommendations, like the recommendations by Dr. Day,

and it

> created havoc, because the more water I drink, the more

electrolytes I

> loose. It becomes impossible to replace the lost electrolytes and

be able to

> maintain intestinal pH. In other words, the more water I drink, the

more

> magnesium, and potassium (and sometimes sodium) I need to take, and

it can

> reach a point where the alkalizing effects of the magnesium and

potassium

> cause irritation in the intestines, interfering with intestinal

health. At

> some point, I would have to resort to IV's or injections in order

to get

> adequate amounts, and I can't tolerate the anesthetics that they

add in

> order to cope with the burning pain that injections create, and I

can't get

> any local doctors to consider doing frequent IV's, which creates

other

> problems for me as well. The effects that I have when I loose too

many

> electrolytes are evident not just from my physical symptoms, but

also show

> up in my biofeedback therapy. When I drink more than 2 quarts of

water a

> day, my brain wave activity drops too low for the computer to pick

up

> because my electrolytes become too watered down. If I drink too

much water,

> I develop heart arrhythmia's. Drinking pedialyte or sports drinks

doesn't

> make a big enough difference. I take 1600 mg. of different forms of

> magnesium, and take potassium supplements daily. And at that level,

I can't

> tolerate any more without creating intestinal problems. I agree

that a

> person has to drink enough water to be able to remove toxins and

waste from

> the system. But the line between enough and too much is not the

same for

> every person, and what helps one person can have a detrimental

effect on

> another, and many people (at the recommendation of alternative

doctors who

> fail to see the whole picture) over do water, thinking they are

doing

> something good for themselves, without realizing that too much

water can be

> as bad as too little, as I unfortunately found out.

>

> The second issue is restore vitamin and mineral deficiencies. I've

gone

> through a lot of experimentation between my naturopath and myself

in an

> effort to restore vitamin and mineral deficiencies. But there are

some

> problems, because while some things are needed, they can actually

end up

> exacerbating symptoms because they feed intestinal pathogens or

stimulate

> viral reproduction, or cause other problems. For example, I have a

problem

> absorbing B vitamins, so I have to take them in larger than normal

> quantities. But B vitamins stimulate the production of candida and

many

> pathogens. I use orthomolecular levels of many nutrients in an

attempt to

> raise deficiencies, and sometimes it doesn't matter how much I

take. My

> bodies ability to use those nutrients is compromised. And quite

frankly, I

> take more than 130 pills a day, and it gets to a point where I get

tired of

> swallowing pills! And there are so few liquid supplements that I can

> tolerate that I am stuck taking pills.

>

> Increasing metabolism can be a very complex issue. I have low

thyroid, but I

> don't tolerate thyroid supplementation or homeopathic or

naturopathic ways

> of altering it. It triggers heart arrhythmia's, as though it is

pushing me

> into hyperthyroidism. I've tried supplements to increase

metabolism, and

> just about everything I've tried I've had major adverse reactions

to. I

> understand that the adrenals also have to be supported, but I have

major

> adrenal problems that I'm finding very difficult to address using

> naturopathic means, in part because not only are my adrenals having

> problems, but I seem to have some sort of feed-back loop defects in

the HPA

> axis, that my naturopath and I haven't been able to resolve. Do

things to

> strengthen my adrenal glands and it ends up being translated into

overactive

> adrenal function. Do things to address metabolic problems, and it

> exacerbates adrenal problems. It's a vicious cycle. It's more

complicated

> than that, but I hope I get the idea across.

>

> My problems are complicated because I have MCS and IBS which I have

to work

> around. I ultimately had to resort to using antibiotics to get some

control

> over the IBS because my naturopath and I went through the whole

gamut of

> natural things that we could do to control it, and none of it

worked. The

> antibiotics made a HUGE difference. About a year ago I became

desperate

> enough that I resorted to trying some antidepressants, and it was a

huge

> mistake, and I'm still struggling with the damage that they caused.

Over the

> years I've tried a number of different medications with disastrous

results

> every time, so I've become very anti-western medicine. But I

haven't been

> able to completely divorce myself of it even with the concentrated

efforts

> of my naturopathic doctor and my bioneurofeedback therapist, and my

> BioSET/NET practitioner.

>

> I do take a prescription antihistamine (Allegra) because I became so

> hypersensitive to everything in spite of all the immune modulators

and

> natural treatments that in order to avoid life-threatening

situations I had

> to take more drastic steps to reduce my reactivity. It's the one

unnatural

> medication that I take regularly. I'm going through BioSET

treatments to try

> to reduce the reactivity, and it has helped. But it is a long and

slow road.

> I've tried some short cut treatments, and they majorly backfired.

(For

> example, a previous bioset practitioner tried using NMT on me, and

it made

> me worse, rather than better.) I do a lot of immune modulating

supplements

> to try to reduce the reactivity, and while they help somewhat, they

fall far

> short of resolving anything enough to avoid life-threatening

reactions. Even

> with the Allegra I still struggle with inflammation of my

esophagus, hives,

> and asthma several times a week, and that's with me being very

careful of

> what I eat and what I come in contact with. I'm still struggling to

try to

> balance all of this - adrenal and other hormone imbalances,

allergies,

> nutrition, diet, and the myriad of other symptoms that I struggle to

> control.

>

> I DO have to use injectable B12, even though it is a prescription.

I look at

> it as being natural, even though it is being delivered in an

unnatural way.

> It is as natural as some of the other supplements that I take, more

so than

> others. But I have a lot of burning skin and muscle pain, and the

B12

> injections are the ONLY thing I've found that alleviates it. (and

I've tried

> a lot of things) And I can't live in a constant state of pain for

very long

> before it begins to affect me in psychological and physical ways.

I've

> learned the lesson the hard way that pain control has a huge impact

on

> symptoms.

>

> I have low stomach acid, and take Betaine HCL with meals, as well as

> digestive enzymes. But that doesn't seem to be enough to adequately

absorb

> enough B12 to achieve the same results as injections, and because

I've had a

> past history of ulcers, I have to be careful with the HCL and

digestive

> enzymes. (Ultimately, it took the antibiotics to heal my ulcers, as

well,

> but I have a precarious balance in keeping them away) When I try to

decrease

> the B12, the neuropathy in my feet gets worse. And nothing natural

that I've

> tried has made any difference except for the B12 injections.

>

> I spend about $1200 to $1600 a month on supplements. None of it is

covered

> by my insurance. Each thing I take has been added slowly, one at a

time,

> with a lot of input from my naturopath, a lot of research of my

own, and a

> lot of experimentation and a lot of patience to wait for things to

work.

> Some things I haven't been able to try because of allergies. But I

still

> have gone though hundreds of different supplements that didn't work

out for

> me. In spite of all of this, I have had a slowly downward

progression. And

> I've had to add the antihistamine and an occasional pain killer to

> compensate for what I have been unable to address through natural

means, and

> I am not functioning well enough to lead any semblance of a normal

life. The

> list of things I've tried is miles long, too long to list. Every

fad that's

> come out, like Mannatech products, Aloe vera, Monolaurin, Olive leaf

> extract, etc., I've tried.

>

> I'm currently planning on trying some other things, though, not

giving up

> hope. I ordered some Indium to try. It is supposed to increase

absorption of

> nutrients, and increase growth hormones and stabilize hormonal

imbalances,

> etc. I'm hoping that it will at least help but we'll see. And my

husband and

> I have decided that I should try the treatments from the

International

> BioCare Hospital down in Mexico, which includes naturopathic,

acupuncture,

> and other alternative medicine therapies, as soon as we can afford

it. But

> the primary thing I'm interested in is the Life Cell Therapy that

they do,

> which is a form of fetal bovine stem cell therapy. I've talked with

some

> local PWC's who went down there and are for all intense purposes in

total

> remission, and I've done some digging around into their treatments,

and most

> of it sounds like it has some potential. Even if it doesn't cure

me, if it

> helps, I'll take any improvement I can get.

>

> At this point, none of the things you listed made any kind of dent

in my

> problems. I've spent 10's of thousands of dollars experimenting

with natural

> things, under the care of a naturopath who is very open minded, very

> knowledgeable, and very professional, and with the help of other

alternative

> medicine practitioners. I know of people with CFS and FM who have

been able

> to do simple things to get over their CFS or FM, such as eating a

vegan

> diet, Eat Right for Your Blood Type diets, or doing colonics, or

mercury

> detoxification, and while I've tried those things, they didn't work

for me

> (and in fact made things worse). I think that the things you

discussed

> should probably be among the first things that a PWC tries, but it

isn't a

> cure-all for every PWC, as I've unfortunately found.

>

> I don't know why some of us have more complicated problems than

others. I

> don't know why what helps one doesn't help another. Maybe it is

because we

> have different pathogens, or maybe different systems of the body are

> affected more than others differently in different PWC, or maybe

there are

> different precipitating circumstances contributing to our problems,

or maybe

> there are too many different disorders all lumped under the same

umbrella of

> CFS, or something entirely different. But whenever someone starts

promoting

> one particular treatment or theory for CFS, most of the time I find

myself

> getting irritated, (there have been a few circulating theories that

seem to

> have some semblance of truth to them, like Pall's theories

and Rick

> Van Konynenburg's theories) For the most part, I've seen it

repeated over

> and over, with every person who comes up with something thinking

that it is

> the final answer for all PWC's, or even assuming that it's the

final answer

> for most. It's just too complicated and individualistic for blanket

> assumptions. It doesn't hurt to recommend those things to try.

Maybe some

> lucky person will find that they're the answer for them. But when

you stated

> " The approach that I think will help reverse symptoms of

CFS/FMS...is "

> turned me off cold, since the things you recommended where things I

> religiously followed, and was disappointed with, and you made a

blanket

> statement, proposing that they would reverse CFS/FMS without any

> accommodations for recognizing that not everything works for

everyone,

> making your statement a little on the arrogant side.

>

>

> lindaj@h...

>

[Guest guest]

Jim,

I have very low blood pressure and potassium (or calcium) seem to

exacerbate the problem. I wonder if I'm not metabolizing these

minerals correctly?

- don

[Guest guest]

Don,

I'm not Jim, but what you describe sounds like it could be due to

adrenal fatigue. According to Dr. L. 's book " Adrenal

Fatigue, " severe adrenal fatigue can result in low output of both

cortisol and aldosterone. Low cortisol produces low blood pressure

among other symptoms. Low aldosterone produces a high potassium-to-

sodium ratio in the blood. What happens if you drink water

containing table salt (sodium chloride)?

Rich

> Jim,

>

> I have very low blood pressure and potassium (or calcium) seem to

> exacerbate the problem. I wonder if I'm not metabolizing these

> minerals correctly?

>

> - don

[Guest guest]

Hi Rich,

I have read Dr. 's book " Adrenal Fatigue " and Dr. Poesnecker's

book, " Chronic Fatigue Unmasked 2000. " I definitely fit their

symptom lists for adrenal fatigue (--a textbook case, in fact).

In the past, I have taken Isocort to raise my cortisol level and ACE

to increase both my cortisol and aldosterone hormonal levels. I have

tried drinking water with sea salt added--but found it tough on my

stomach (--though, I did noticed a slight increase in BP). I find

liquorish root tea also helps raise my BP.

I learned the hard way to be very careful about using cortisol

supplements. They definitely help with my BP and chest pains, but

set the stage for major relapses (--over doing it on Isocort started

my problems with chest pain and recently some nasty nasal problems).

I also take a number of supplements to increase my low glutathione

levels. But they don't seem to be sufficient to counteract the

immune suppressive effects of cortisol replacement therapy. (Oddly,

the one thing that cranks up my immune system instantly is

Hydrocodone. Not sure why a narcotic is so effective, but it allows

me to work, in better times, with draining my system.)

Right now, I'm waiting for my body to clear from a long regime of

Sporanox, so I can take the ASI test and begin treatment with Dr.

Poesnecker. My system seems to better tolerate the gentler ACE and

glandulars treatments he recommends. Hopefully, they will be

effective.

Thanks,

don

> Don,

>

> I'm not Jim, but what you describe sounds like it could be due to

> adrenal fatigue. According to Dr. L. 's book " Adrenal

> Fatigue, " severe adrenal fatigue can result in low output of both

> cortisol and aldosterone. Low cortisol produces low blood pressure

> among other symptoms. Low aldosterone produces a high potassium-to-

> sodium ratio in the blood. What happens if you drink water

> containing table salt (sodium chloride)?

>

> Rich

>

>

> > Jim,

> >

> > I have very low blood pressure and potassium (or calcium) seem to

> > exacerbate the problem. I wonder if I'm not metabolizing these

> > minerals correctly?

> >

> > - don

[Guest guest]

Jim,

Thanks so much for the effort you put into sharing this information

with us. I find it so clear and very helpful.

I really wish I could find the sweet dairy whey in my local health

food store, but so far have been unsuccessful. Will have to travel

further away, I suppose. Any suggestions on locating it?

I've also considered one of your FIR saunas, but wonder about using

it practically. Do you have to be in a small space? A bathroom say?

I'm worried that the only bathroom in my house that's completely

enclosed may have a mold problem. I'm not too crazy about sitting in

a moldy bathroom, heating things up and causing more growth of

harmful pathogens. Any thoughts on this?

thanks again for your contributions. I find them very helpful.

penny

p.s. by the way, I feel that all of the methods you're describing

will also be a tremendous help for those of us colonized with too

much pathogenic bacteria. The salt, the heat, the alkaline ph. These

are all conditions that the bacteria hate. And I have a very strong

suspicion that it's the bacteria and their toxin output that's giving

us all our symptoms. Supporting the body in a way that does not

support bacterial colonization is a good thing. Also enjoyed your

recent post about baby formula and cows milk causing an imbalance in

the gut flora from a very early age. We're just doing everything

wrong, and creating an environment for the wrong bacteria to overtake

us. Not the way nature designed it at all.

> > I have been trying to use natural remedies to treat my CFS, and

> natural or

> > alternative medicine therapies have been my primary focus. And

for

> the

> > record, I do include the 4 things you listed below, but they

> weren't even a

> > drop in the bucket for dealing with problems, and didn't come

> anywhere near

> > resolving my CFS, or even to stop my downward progression.

> >

> > So, to discuss the four things you mentioned, let me go through

> them here:

> > There is a fine balance in CFS between hydrating the body, and

> loosing

> > electrolytes from over hydration. I've gone through the " drink

lots

> of

> > water " recommendations, like the recommendations by Dr.

Day,

> and it

> > created havoc, because the more water I drink, the more

> electrolytes I

> > loose. It becomes impossible to replace the lost electrolytes and

> be able to

> > maintain intestinal pH. In other words, the more water I drink,

the

> more

> > magnesium, and potassium (and sometimes sodium) I need to take,

and

> it can

> > reach a point where the alkalizing effects of the magnesium and

> potassium

> > cause irritation in the intestines, interfering with intestinal

> health. At

> > some point, I would have to resort to IV's or injections in order

> to get

> > adequate amounts, and I can't tolerate the anesthetics that they

> add in

> > order to cope with the burning pain that injections create, and I

> can't get

> > any local doctors to consider doing frequent IV's, which creates

> other

> > problems for me as well. The effects that I have when I loose too

> many

> > electrolytes are evident not just from my physical symptoms, but

> also show

> > up in my biofeedback therapy. When I drink more than 2 quarts of

> water a

> > day, my brain wave activity drops too low for the computer to

pick

> up

> > because my electrolytes become too watered down. If I drink too

> much water,

> > I develop heart arrhythmia's. Drinking pedialyte or sports drinks

> doesn't

> > make a big enough difference. I take 1600 mg. of different forms

of

> > magnesium, and take potassium supplements daily. And at that

level,

> I can't

> > tolerate any more without creating intestinal problems. I agree

> that a

> > person has to drink enough water to be able to remove toxins and

> waste from

> > the system. But the line between enough and too much is not the

> same for

> > every person, and what helps one person can have a detrimental

> effect on

> > another, and many people (at the recommendation of alternative

> doctors who

> > fail to see the whole picture) over do water, thinking they are

> doing

> > something good for themselves, without realizing that too much

> water can be

> > as bad as too little, as I unfortunately found out.

> >

> > The second issue is restore vitamin and mineral deficiencies.

I've

> gone

> > through a lot of experimentation between my naturopath and myself

> in an

> > effort to restore vitamin and mineral deficiencies. But there are

> some

> > problems, because while some things are needed, they can actually

> end up

> > exacerbating symptoms because they feed intestinal pathogens or

> stimulate

> > viral reproduction, or cause other problems. For example, I have

a

> problem

> > absorbing B vitamins, so I have to take them in larger than normal

> > quantities. But B vitamins stimulate the production of candida

and

> many

> > pathogens. I use orthomolecular levels of many nutrients in an

> attempt to

> > raise deficiencies, and sometimes it doesn't matter how much I

> take. My

> > bodies ability to use those nutrients is compromised. And quite

> frankly, I

> > take more than 130 pills a day, and it gets to a point where I

get

> tired of

> > swallowing pills! And there are so few liquid supplements that I

can

> > tolerate that I am stuck taking pills.

> >

> > Increasing metabolism can be a very complex issue. I have low

> thyroid, but I

> > don't tolerate thyroid supplementation or homeopathic or

> naturopathic ways

> > of altering it. It triggers heart arrhythmia's, as though it is

> pushing me

> > into hyperthyroidism. I've tried supplements to increase

> metabolism, and

> > just about everything I've tried I've had major adverse reactions

> to. I

> > understand that the adrenals also have to be supported, but I

have

> major

> > adrenal problems that I'm finding very difficult to address using

> > naturopathic means, in part because not only are my adrenals

having

> > problems, but I seem to have some sort of feed-back loop defects

in

> the HPA

> > axis, that my naturopath and I haven't been able to resolve. Do

> things to

> > strengthen my adrenal glands and it ends up being translated into

> overactive

> > adrenal function. Do things to address metabolic problems, and it

> > exacerbates adrenal problems. It's a vicious cycle. It's more

> complicated

> > than that, but I hope I get the idea across.

> >

> > My problems are complicated because I have MCS and IBS which I

have

> to work

> > around. I ultimately had to resort to using antibiotics to get

some

> control

> > over the IBS because my naturopath and I went through the whole

> gamut of

> > natural things that we could do to control it, and none of it

> worked. The

> > antibiotics made a HUGE difference. About a year ago I became

> desperate

> > enough that I resorted to trying some antidepressants, and it was

a

> huge

> > mistake, and I'm still struggling with the damage that they

caused.

> Over the

> > years I've tried a number of different medications with

disastrous

> results

> > every time, so I've become very anti-western medicine. But I

> haven't been

> > able to completely divorce myself of it even with the

concentrated

> efforts

> > of my naturopathic doctor and my bioneurofeedback therapist, and

my

> > BioSET/NET practitioner.

> >

> > I do take a prescription antihistamine (Allegra) because I became

so

> > hypersensitive to everything in spite of all the immune

modulators

> and

> > natural treatments that in order to avoid life-threatening

> situations I had

> > to take more drastic steps to reduce my reactivity. It's the one

> unnatural

> > medication that I take regularly. I'm going through BioSET

> treatments to try

> > to reduce the reactivity, and it has helped. But it is a long and

> slow road.

> > I've tried some short cut treatments, and they majorly backfired.

> (For

> > example, a previous bioset practitioner tried using NMT on me,

and

> it made

> > me worse, rather than better.) I do a lot of immune modulating

> supplements

> > to try to reduce the reactivity, and while they help somewhat,

they

> fall far

> > short of resolving anything enough to avoid life-threatening

> reactions. Even

> > with the Allegra I still struggle with inflammation of my

> esophagus, hives,

> > and asthma several times a week, and that's with me being very

> careful of

> > what I eat and what I come in contact with. I'm still struggling

to

> try to

> > balance all of this - adrenal and other hormone imbalances,

> allergies,

> > nutrition, diet, and the myriad of other symptoms that I struggle

to

> > control.

> >

> > I DO have to use injectable B12, even though it is a

prescription.

> I look at

> > it as being natural, even though it is being delivered in an

> unnatural way.

> > It is as natural as some of the other supplements that I take,

more

> so than

> > others. But I have a lot of burning skin and muscle pain, and the

> B12

> > injections are the ONLY thing I've found that alleviates it. (and

> I've tried

> > a lot of things) And I can't live in a constant state of pain for

> very long

> > before it begins to affect me in psychological and physical ways.

> I've

> > learned the lesson the hard way that pain control has a huge

impact

> on

> > symptoms.

> >

> > I have low stomach acid, and take Betaine HCL with meals, as well

as

> > digestive enzymes. But that doesn't seem to be enough to

adequately

> absorb

> > enough B12 to achieve the same results as injections, and because

> I've had a

> > past history of ulcers, I have to be careful with the HCL and

> digestive

> > enzymes. (Ultimately, it took the antibiotics to heal my ulcers,

as

> well,

> > but I have a precarious balance in keeping them away) When I try

to

> decrease

> > the B12, the neuropathy in my feet gets worse. And nothing

natural

> that I've

> > tried has made any difference except for the B12 injections.

> >

> > I spend about $1200 to $1600 a month on supplements. None of it

is

> covered

> > by my insurance. Each thing I take has been added slowly, one at

a

> time,

> > with a lot of input from my naturopath, a lot of research of my

> own, and a

> > lot of experimentation and a lot of patience to wait for things

to

> work.

> > Some things I haven't been able to try because of allergies. But

I

> still

> > have gone though hundreds of different supplements that didn't

work

> out for

> > me. In spite of all of this, I have had a slowly downward

> progression. And

> > I've had to add the antihistamine and an occasional pain killer to

> > compensate for what I have been unable to address through natural

> means, and

> > I am not functioning well enough to lead any semblance of a

normal

> life. The

> > list of things I've tried is miles long, too long to list. Every

> fad that's

> > come out, like Mannatech products, Aloe vera, Monolaurin, Olive

leaf

> > extract, etc., I've tried.

> >

> > I'm currently planning on trying some other things, though, not

> giving up

> > hope. I ordered some Indium to try. It is supposed to increase

> absorption of

> > nutrients, and increase growth hormones and stabilize hormonal

> imbalances,

> > etc. I'm hoping that it will at least help but we'll see. And my

> husband and

> > I have decided that I should try the treatments from the

> International

> > BioCare Hospital down in Mexico, which includes naturopathic,

> acupuncture,

> > and other alternative medicine therapies, as soon as we can

afford

> it. But

> > the primary thing I'm interested in is the Life Cell Therapy that

> they do,

> > which is a form of fetal bovine stem cell therapy. I've talked

with

> some

> > local PWC's who went down there and are for all intense purposes

in

> total

> > remission, and I've done some digging around into their

treatments,

> and most

> > of it sounds like it has some potential. Even if it doesn't cure

> me, if it

> > helps, I'll take any improvement I can get.

> >

> > At this point, none of the things you listed made any kind of

dent

> in my

> > problems. I've spent 10's of thousands of dollars experimenting

> with natural

> > things, under the care of a naturopath who is very open minded,

very

> > knowledgeable, and very professional, and with the help of other

> alternative

> > medicine practitioners. I know of people with CFS and FM who have

> been able

> > to do simple things to get over their CFS or FM, such as eating a

> vegan

> > diet, Eat Right for Your Blood Type diets, or doing colonics, or

> mercury

> > detoxification, and while I've tried those things, they didn't

work

> for me

> > (and in fact made things worse). I think that the things you

> discussed

> > should probably be among the first things that a PWC tries, but

it

> isn't a

> > cure-all for every PWC, as I've unfortunately found.

> >

> > I don't know why some of us have more complicated problems than

> others. I

> > don't know why what helps one doesn't help another. Maybe it is

> because we

> > have different pathogens, or maybe different systems of the body

are

> > affected more than others differently in different PWC, or maybe

> there are

> > different precipitating circumstances contributing to our

problems,

> or maybe

> > there are too many different disorders all lumped under the same

> umbrella of

> > CFS, or something entirely different. But whenever someone starts

> promoting

> > one particular treatment or theory for CFS, most of the time I

find

> myself

> > getting irritated, (there have been a few circulating theories

that

> seem to

> > have some semblance of truth to them, like Pall's theories

> and Rick

> > Van Konynenburg's theories) For the most part, I've seen it

> repeated over

> > and over, with every person who comes up with something thinking

> that it is

> > the final answer for all PWC's, or even assuming that it's the

> final answer

> > for most. It's just too complicated and individualistic for

blanket

> > assumptions. It doesn't hurt to recommend those things to try.

> Maybe some

> > lucky person will find that they're the answer for them. But when

> you stated

> > " The approach that I think will help reverse symptoms of

> CFS/FMS...is "

> > turned me off cold, since the things you recommended where things

I

> > religiously followed, and was disappointed with, and you made a

> blanket

> > statement, proposing that they would reverse CFS/FMS without any

> > accommodations for recognizing that not everything works for

> everyone,

> > making your statement a little on the arrogant side.

> >

> >

> > lindaj@h...

> >