Re: Need encouragement

September 22, 2008

I'm in kind-of the same place. I started chelating almost 3 years

ago and still don't feel very good or have a brain that functions

very well. I haven't been able to chelate consistently, though,

maybe one to two rounds a month on average. i think if you are

really sick, it takes a lot longer because your body is so beat up

that you have to take it really easy, and if you don't, you just beat

up your body more. in a lot of ways, i think i actually felt better

two years ago. i also have lyme disease (i think it is almost gone)

and have for about 6 years now. About two years i found that the

treatments i had been doing for it weren't working, and found some

new ones that looked very promising. so i was all excited and so

sick of being sick, so i decided i would just chelate all the time

and treat myself for lyme disease all the time as hard as i could and

i would just get better as quickly as possible, even if i felt

horrible in the process. that turned out to be a very, very bad way

of doing things. i burned myself out very badly, so badly i am still

very tired and not up to where i was, energy-wise, two years ago.

the thing is, i had the hair analysis test that tests for " deranged

mineral transport " and that came back positive for mercury. and i

can still only tolerate about 50mg DMSA with 25mg LA (which is sadly

even less than i could tolerate at one point when my body was

stronger than now) and even that exacerbates my symptoms about as

much as i can handle. so i know i have mercury poisoning. i thought

i would be way ahead of where i am by now, but even so, i know this

is the solution and i have to keep going with it and i will

eventually get better. so i guess what i am saying is that if you

_know_ you have mercury poisoning, like if you are unable to

tolerate, say 200mg of LA every 3-4 hours, or it exacerbates symptoms

that could only reasonably be due to mercury poisoning, then just

hang in there and keep going... though it is very possible that

there are other things effecting you like with me. and you really do

have to take into account how much stress you have been under, both

from being sick and other sources, personal or physical.

good luck.

>

> I have reached my year marker and am evaluating progress or lack

> thereof. I realized in the beginning that I would be chelating for

a

> minimum of 2 years, but believed I would see some improvement after

a

> year on this protocol. I was able to talk to Dr Teitelbaum

personally

> this week & ask his opinion. He believes that metal toxicity is

only a

> piece of the puzzle and wants me to go to a CFS/Fibro clinic for

> further investigation. I'm becoming more skeptical all the time

with so

> many claims that this or that will be the cure. I've been ill for

16+

> years and my hope for ever attaining health is diminishing rapidly.

> Unfortunately like most of you, my resources are limited, so I

can't

> run off to Mayo Clinic (like outsiders are constantly suggesting).

I

> haven't gone into any details here, but how do I know if I'm on the

> right track? Shouldn't I be seeing some progress at this point?

> Joy

>

September 22, 2008

If after a year of chelation you can tolerate larger doses of chelator

than you could originally, that is " progress " . There may be

interventions that would help you to get better and feel better

faster, but it is really difficult to say anything much without any

details of your history and what you have done to date.

>

> >

> > I have reached my year marker and am evaluating progress or lack

> > thereof. I realized in the beginning that I would be chelating for

> a

> > minimum of 2 years, but believed I would see some improvement after

> a

> > year on this protocol. I was able to talk to Dr Teitelbaum

> personally

> > this week & ask his opinion. He believes that metal toxicity is

> only a

> > piece of the puzzle and wants me to go to a CFS/Fibro clinic for

> > further investigation. I'm becoming more skeptical all the time

> with so

> > many claims that this or that will be the cure. I've been ill for

> 16+

> > years and my hope for ever attaining health is diminishing rapidly.

> > Unfortunately like most of you, my resources are limited, so I

> can't

> > run off to Mayo Clinic (like outsiders are constantly suggesting).

> I

> > haven't gone into any details here, but how do I know if I'm on the

> > right track? Shouldn't I be seeing some progress at this point?

> > Joy

> >

>

September 22, 2008

Have you considered adrenal and thyroid hormone replacements? In some

cases it is essential to replace these in order for the body to heal.

> >

> > I have reached my year marker and am evaluating progress or lack

> > thereof. I realized in the beginning that I would be chelating for

> a

> > minimum of 2 years, but believed I would see some improvement after

> a

> > year on this protocol. I was able to talk to Dr Teitelbaum

> personally

> > this week & ask his opinion. He believes that metal toxicity is

> only a

> > piece of the puzzle and wants me to go to a CFS/Fibro clinic for

> > further investigation. I'm becoming more skeptical all the time

> with so

> > many claims that this or that will be the cure. I've been ill for

> 16+

> > years and my hope for ever attaining health is diminishing rapidly.

> > Unfortunately like most of you, my resources are limited, so I

> can't

> > run off to Mayo Clinic (like outsiders are constantly suggesting).

> I

> > haven't gone into any details here, but how do I know if I'm on the

> > right track? Shouldn't I be seeing some progress at this point?

> > Joy

> >

>

September 23, 2008

Hi Joy,

I am also 1 year chelating now.

I also am thinking sometimes: it isn't going good.

Yesterday for instance was my worst day till now,

but this morning I was walking better then ever the

last 2 years: good power, good balance (just some minutes, but...).

I am experiencing the ups & downs extremely.

On this moment it is " as usually " .

I know I have to chelate at least 3 years. I don't care at all.

Because I am sure I " ll be/get better within some years !

And can live again and enjoy my life.

The process isn't eassy; I was/am very ill; it " ll take time.

I hope you have some better moments too.

That's what give me faith. Go on with the proces !!

I think this is " the good protocol " .

Simon

________________________________

> To: frequent-dose-chelation

> From: lindajaytee@...

> Date: Tue, 23 Sep 2008 04:29:06 +0000

> Subject: Re: need encouragement

>

> If after a year of chelation you can tolerate larger doses of chelator

> than you could originally, that is " progress " . There may be

> interventions that would help you to get better and feel better

> faster, but it is really difficult to say anything much without any

> details of your history and what you have done to date.

>

>>

>>>

>>> I have reached my year marker and am evaluating progress or lack

>>> thereof. I realized in the beginning that I would be chelating for

>> a

>>> minimum of 2 years, but believed I would see some improvement after

>> a

>>> year on this protocol. I was able to talk to Dr Teitelbaum

>> personally

>>> this week & ask his opinion. He believes that metal toxicity is

>> only a

>>> piece of the puzzle and wants me to go to a CFS/Fibro clinic for

>>> further investigation. I'm becoming more skeptical all the time

>> with so

>>> many claims that this or that will be the cure. I've been ill for

>> 16+

>>> years and my hope for ever attaining health is diminishing rapidly.

>>> Unfortunately like most of you, my resources are limited, so I

>> can't

>>> run off to Mayo Clinic (like outsiders are constantly suggesting).

>> I

>>> haven't gone into any details here, but how do I know if I'm on the

>>> right track? Shouldn't I be seeing some progress at this point?

>>> Joy

>>>

>>

>

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September 24, 2008

> Have you considered adrenal and thyroid hormone replacements? In some

> cases it is essential to replace these in order for the body to heal.

>

Yes, I'd have to say that some form of adrenal support (and thereafter

thyroid) should be mandatory when beginning chelation.

I would love it added to the basic supplements list as it makes such a HUGE

difference.

Adrenal Cortex is my top 'mercury' supplement, along with Vit E.

I don't know if anyone else noticed this, but I found that when I did rounds

without Vitamin E, I really, really battled compared to round with it.

Thanks

DeanSA

October 12, 2008

Hi Terri , Just starting with this question. I did not see

any mention to how you do with sulfur.? DMSA has something to

do with sulfur and will cause bloating, diarhea ,problems due

to difficulty of the body dealing with sulfur.

nanci

>

> After a long break, I started chelating a few weeks ago at 25 mg

DMSA which

> seemed to trigger a serious bout of diarrhea. I stopped for a

couple of

> weeks, halved the dosage and started again. I have now completed

four

> rounds of 12.5mg DMSA taken every four hours for 3.5 days. I am

not having

> major issues with brain fog or impaired thinking as I have in the

past, but

> I am still experiencing some fairly serious bowel problems.

>

> Every morning I am having multiple bouts of diarrhea. It strikes

me quickly

> and violently and I have only a minute or so to find a bathroom.

The

> diarrhea is watery and it burns. The same thing occurs throughout

the day,

> but to a lesser degree. Sometimes eating helps and sometimes it

does not.

> But I always feels bloated and uncomfortable after eating - and

sometimes

> nauseous.

>

> It is causing me problems with my job - getting to work on time,

etc., -

> and my job was already very stressful. My nerves are pretty

frayed.

>

> I went to the gastroenterologist who told me to schedule a

colonoscopy and

> gave me an Rx for Questran. I do not want to have a colonoscopy

because of

> the preparation. I do not want to take the Questran because the

doctor

> said I should not take any meds or supplements within three hours

of taking

> it. That would eliminate frequent dosing and I do not think that I

will

> ever get better if I do not chelate.

>

> Here are the supplements that I am currently taking: Flax Oil,

Lysine,

> Magnesium, Calcium, Milk Thistle Extract, Molybdenum, Fish Oil,

Vitamin B6,

> Vitamin C, Vitamin E, Zinc, Bromelain, GABA, Glutamine, Glycine,

Lecithin,

> Melatonin, Taurine, Vitamin B1, Vitamin B2, Niacinamide,

phosphatidylserine

> & Digestive Enzymes.

>

> I think that my problem is bile being dumped into my intestines (as

I have

> noted before, I do not have a gallbladder). I was taking bile

salts, but

> stopped because they stimulate the bile production. I took the

bile salts

> because of the pale stool issue and they did help with that for a

while. I

> read that yogurt is good at binding bile and I have been eating

lots of

> yogurt (24 hour SCD-style). So far I have not noticed any

improvement.

>

> Interestingly and amazingly, even though I am not eating much and

what I do

> eat seems to go right through, I am gaining weight - 10 pounds in

the last

> few weeks. That is very depressing.

>

> I don't know what I would do if it weren't for groups like this -

especially

> the folks who give so freely of their time to help the rest of us.

>

> Thanks.

>

> Teri

>

October 13, 2008

Nanci, I checked the list of high sulfur foods and see that I am consuming

more than I thought. I am only eating foods that have not given me

problems in the past but some of t hem are evidently high in sulfur. I will

try eliminating them. It lists " dairy products " but does not specifically

mention yogurt. Since yogurt is the mainstay of my diet, I would be left

with very little to eat. Has anyone had a problem with yogurt? Again,

mine is homemade, cultured for 24 hours. I am currently using commercial

milk to make yogurt, but I have just located a source of raw milk which I

had intended to try. Thanks. teri

Hi Terri , Just starting with this question. I did not see

any mention to how you do with sulfur.? DMSA has something to

do with sulfur and will cause bloating, diarhea ,problems due

to difficulty of the body dealing with sulfur.

nanci

,_._,___

October 13, 2008

With the diarhea you really need to replace lots of water and

electrolytes. I use diluted ginger ale when I am not well enough to

make an electrolyte drink. I use the honey lemon electrolyte drink

from the SCD site which is approx - 1 lemon, 4 c warm water, 1 T

honey (or sucrolose), 1/4 tsp salt, 1/4 tsp baking soda.

It may be best to drop supplements, at least some of them, until the

problem resolves. In particular, Mg and vit C can worsen this

problem. When the problem resolves they can be reintroduced slowly,

taking note of what dose is your bowel tolerance for each.

For sure I would drop the bromelain for good. Animal derived

digestive enzymes are better.

Many of the people who follow the SCD do so to resolve this and

similar issues. It is important to start on the beginner SCD,

details can be found at the website. If you are sulfur food

intolerant there may be SCD foods that you need to avoid. There may

be others - for example I found that I could not tolerate honey, that

is SCD legal, but not for me. There are lots of SCD rules about when

to introduce certain things, that I can't remember at the moment, but

it is mostly in the " Breaking the Viscous Cycle " book (that you might

be able to find at your local library) and there lot of information

can be found on the internet with a google search.

I know several people who had similar symptoms and found out

eventually that they were gluten intolerant. The symptoms flared

after some sort of a stress.

Hope you feel better.

>

> After a long break, I started chelating a few weeks ago at 25 mg

DMSA which

> seemed to trigger a serious bout of diarrhea. I stopped for a

couple of

> weeks, halved the dosage and started again. I have now completed

four

> rounds of 12.5mg DMSA taken every four hours for 3.5 days. I am

not having

> major issues with brain fog or impaired thinking as I have in the

past, but

> I am still experiencing some fairly serious bowel problems.

>

> Every morning I am having multiple bouts of diarrhea. It strikes

me quickly

> and violently and I have only a minute or so to find a bathroom.

The

> diarrhea is watery and it burns. The same thing occurs throughout

the day,

> but to a lesser degree. Sometimes eating helps and sometimes it

does not.

> But I always feels bloated and uncomfortable after eating - and

sometimes

> nauseous.

>

> It is causing me problems with my job - getting to work on time,

etc., -

> and my job was already very stressful. My nerves are pretty

frayed.

>

> I went to the gastroenterologist who told me to schedule a

colonoscopy and

> gave me an Rx for Questran. I do not want to have a colonoscopy

because of

> the preparation. I do not want to take the Questran because the

doctor

> said I should not take any meds or supplements within three hours

of taking

> it. That would eliminate frequent dosing and I do not think that I

will

> ever get better if I do not chelate.

>

> Here are the supplements that I am currently taking: Flax Oil,

Lysine,

> Magnesium, Calcium, Milk Thistle Extract, Molybdenum, Fish Oil,

Vitamin B6,

> Vitamin C, Vitamin E, Zinc, Bromelain, GABA, Glutamine, Glycine,

Lecithin,

> Melatonin, Taurine, Vitamin B1, Vitamin B2, Niacinamide,

phosphatidylserine

> & Digestive Enzymes.

>

> I think that my problem is bile being dumped into my intestines (as

I have

> noted before, I do not have a gallbladder). I was taking bile

salts, but

> stopped because they stimulate the bile production. I took the

bile salts

> because of the pale stool issue and they did help with that for a

while. I

> read that yogurt is good at binding bile and I have been eating

lots of

> yogurt (24 hour SCD-style). So far I have not noticed any

improvement.

>

> Interestingly and amazingly, even though I am not eating much and

what I do

> eat seems to go right through, I am gaining weight - 10 pounds in

the last

> few weeks. That is very depressing.

>

> I don't know what I would do if it weren't for groups like this -

especially

> the folks who give so freely of their time to help the rest of us.

>

> Thanks.

>

> Teri

>

October 14, 2008

,

Thanks for the info. I have the BTVC book and will try to go back to

the basics. I will stop taking bromelain - I was taking it more for

sinus problems than for digestion. I do have a couple more questions.

Is Betaine HCl of animal origin? Is it possible to take too much

probiotic? I have been taking 1.5 scoops of Custom Probiotics in th

AM and a Culturelle with meals and at bedtime. Could that possibly

trigger diarrhea?

Thanks.

Terri

>

> With the diarhea you really need to replace lots of water and

> electrolytes. I use diluted ginger ale when I am not well enough to

> make an electrolyte drink. I use the honey lemon electrolyte drink

> from the SCD site which is approx - 1 lemon, 4 c warm water, 1 T

> honey (or sucrolose), 1/4 tsp salt, 1/4 tsp baking soda.

>

> It may be best to drop supplements, at least some of them, until the

> problem resolves. In particular, Mg and vit C can worsen this

> problem. When the problem resolves they can be reintroduced slowly,

> taking note of what dose is your bowel tolerance for each.

>

> For sure I would drop the bromelain for good. Animal derived

> digestive enzymes are better.

>

> Many of the people who follow the SCD do so to resolve this and

> similar issues. It is important to start on the beginner SCD,

> details can be found at the website. If you are sulfur food

> intolerant there may be SCD foods that you need to avoid. There may

> be others - for example I found that I could not tolerate honey, that

> is SCD legal, but not for me. There are lots of SCD rules about when

> to introduce certain things, that I can't remember at the moment, but

> it is mostly in the " Breaking the Viscous Cycle " book (that you might

> be able to find at your local library) and there lot of information

> can be found on the internet with a google search.

>

> I know several people who had similar symptoms and found out

> eventually that they were gluten intolerant. The symptoms flared

> after some sort of a stress.

>

> Hope you feel better.

>

October 14, 2008

Bromelain is a great supplement though with many benefits. It is very

anti-inflammatory and can kill parasites as well. It helps with

allergies, sinus problems, boosts the immune system, and maybe even

exercise recovery. I wouldn't necessarily stop taking it, but I did

notice that bromelain gave me diarrhea the last time I took it...and

it took a few days for me to pinpoint it was the bromelain. As far as

animal enzymes being better...yes they probably are for digestion but

bromelain has a lot of benefits that they wouldn't. Taking both

wouldn't be bad. But do take a break and see if it affects the diarrhea.

I personally cannot tolerate Betaine HCL, which isn't from an animal

source if I remember correctly. Betaine will give me insomnia, bad

insomnia, similar to the reaction that I get from methylcobalamin.

Betaine is a methyl donor and I may be an over-methylator though.

-

> >

> > With the diarhea you really need to replace lots of water and

> > electrolytes. I use diluted ginger ale when I am not well enough to

> > make an electrolyte drink. I use the honey lemon electrolyte drink

> > from the SCD site which is approx - 1 lemon, 4 c warm water, 1 T

> > honey (or sucrolose), 1/4 tsp salt, 1/4 tsp baking soda.

> >

> > It may be best to drop supplements, at least some of them, until the

> > problem resolves. In particular, Mg and vit C can worsen this

> > problem. When the problem resolves they can be reintroduced slowly,

> > taking note of what dose is your bowel tolerance for each.

> >

> > For sure I would drop the bromelain for good. Animal derived

> > digestive enzymes are better.

> >

> > Many of the people who follow the SCD do so to resolve this and

> > similar issues. It is important to start on the beginner SCD,

> > details can be found at the website. If you are sulfur food

> > intolerant there may be SCD foods that you need to avoid. There may

> > be others - for example I found that I could not tolerate honey, that

> > is SCD legal, but not for me. There are lots of SCD rules about when

> > to introduce certain things, that I can't remember at the moment, but

> > it is mostly in the " Breaking the Viscous Cycle " book (that you might

> > be able to find at your local library) and there lot of information

> > can be found on the internet with a google search.

> >

> > I know several people who had similar symptoms and found out

> > eventually that they were gluten intolerant. The symptoms flared

> > after some sort of a stress.

> >

> > Hope you feel better.

> >

>

October 14, 2008

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

From: gdawson6

I personally cannot tolerate Betaine HCL, which isn't from an animal

source if I remember correctly. Betaine will give me insomnia, bad

insomnia, similar to the reaction that I get from methylcobalamin.

Betaine is a methyl donor

===>Aren't Betaine HCL and Betaine, such as TMG, two very different animals?

and I may be an over-methylator though.