Re: Re: Started ALA - Nervous about dosage I'm taking

[Guest guest]

Hi Doris and all

I had most of my amalgams removed about five years ago... only

because they were old and my dentist felt they weren't in very good

shape.

They weren't replaced using any particular protocol - just drilled

out - but I don't honestly recall having any particular problems

after they were replaced. If I did, it was subtle.

The big problem started last May, following an abdominal sports

injury. My digestion went haywire, I started getting incredibly

tired, and I developed a subtle tinnitus in my right ear.

The tinnitus and fatigue gradually became a whole lot worse, then

just exploded in October last year, after being " diagnosed " with CFS.

I'd wake up in the middle of the night with airport-runway level

tinnitus and hearing loss. ENTs were at a loss to explain it. I also

got vivid nightmares every time I fell asleep, and would wake up

every couple of hours thinking I'd been out for five hours.

Five months later, I had a swollen, burning tongue and mouth, burning

ears, tinnitus in both ears, fluctuating deafness, migraine-type

" flashing lights " at night, and generally felt like death.

I eventually remembered that my biggest amalgam had been left in

place, because the dentist felt it was so big I might lose the whole

tooth if he took it out. The tooth had turned a medium grey colour,

and there was an obvious " tatoo " of the gum around the tooth.

So I had it removed... badly. The sleep disturbances kicked off

again, big time.

However, some of the other symptoms did seem to level off a bit.

It was about two weeks later i started trying the DMSA.

At 12.5mg every 3.5 hours, I would get an intense tingling sensation

in both forarms, increased tinnitus, but a general " warm " feeling of

well-being.

Then on ending a round all hell would break loose. Headache, weakness...

I didn't stay with the DMSA for very long, because every doc I saw

insisted it couldn't possibly be mercury-related (and they could yet

be right).

The tinnitus and hearing loss have been getting progressively worse

however. No identifiable cause despite lots of investigations.

Recently I started giving the DMSA another go, on the thinking that

if it's not mercury it won't do any harm, but if it is, the sooner I

get on with it the better. I've done about three rounds.

Oh, occasionally, I get a splitting headache 12-24 hours after

starting a round, plus a real problem with bright lights. The first

instance landed me in emergency, where they thought I had a sub-

arachnoid haematoma! (I didn't).

The question I can never get an answer to is, if I have a reaction to

DMSA, does that mean I'm definitely mercury-poisoned? Can you get a

reaction to DMSA for any other reason? It's quite possible that my

continued hearing loss is auto-immune in nature... although I woudn't

have thought that DMSA would have such an immediate effect on an auto-

immune condition. (i.e. <24hrs after starting a round, funny things

would happen to my ears).

I should mention that I was also getting excruciating burning pain in

both ears accompanied by deafness ,back around March to May this

year. It was so bad it would keep me awake all night. I honestly

wanted to die... if I'd gone to sleep and not woken up again, that

would have been just fine by me.

What that was all about I'm not sure. Some say it's nerve pain,

others suggested cochlear hydrops.

If you're getting vertigo attacks I would find a really good ear

specialist somewhere and get it carefully investigated.

Does any of this sound familiar?

The reaction I was get

> Hi . I just read it yesterday - so let me check after the middle

> of book. I'm checking........BTW - I tested positive to Lupus ANA and

> further antibody tests found me positive for these two weird

> antibodies for Sjogrens. I'd never heard of it. My body attacks

> my saliva glands and my tear glands. I always have a dry mouth -

> always thirsty.

> OK, I found it. See page 109 - left column, last sentence of first

> paragraph. " A few physicians believe DMSA and perhaps DMPS may

> exacerbate autoimmune disease " . I would never have found it, if

> I hadn't circled it. I wrote all over the place taking notes while

> reading it again. Still don't understand 1/2 of it, though.

>

> BTW - I also saw a study on the net a few years ago, Tulane

> University in New Orleans. Tested a group of FMS people for

> autoimmune antibodies and found that 78$ of them had the

> freak antibodies that women get who have had silicone breast

> implants. Now that is really strange. I have alot of ear

> involvement (left mostly). I put vodka in my ears after taking

> a shower - just to help dry out canal. I get pain and pressure

> deep in my ear on and off. When it is really bad, I will then

> have a vertigo for a while until it clears. I had horrible

> vertigo for months before I had my mercury messed up teeth

> yanked out!

>

> Doris

>

>

>>

>> Where does Andy's book say DMSA can make autoimmune conditions worse?

>>

>>>

>>

>>

>>> taking the LA (during my off days)? I don't have any DMSA, and

> don't

>>> know if I will use it because I have an autoimmune problem

> (Sjogrens)

>>> and Andy's book claims that DMSA can make autoimmune problems worse.

>>

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[Guest guest]

,

When you had your abdominal injury, did they repair your abdomen with

any type of plastic or mesh. SOME people are having serious reactions to this.

Just wondered as I am being checked out for this now from a hernia repair

with Marlex mesh.

bill

[Guest guest]

Hi Doris, thanks for your reply. I've had time to scan thru it, will

read it more thoroughly later (it's after midnight here).

But I can answer this bit:

> I don't understand how you can open a 50 mg

> capsule and divide it into 4ths. Do you just add the 1/4 powder to

> water and drink it. It would be such a tiny amount to work with. I

> don't want to try and fill 4 separate capsules with these tiny

> amounts. That wouldn't be possible, would it?

The DMSA caps we get here are 100mg (don't seem to be able to get any

other sizes) containing powder.

I open a capsule, tip the contents onto a piece of clean glass, then

shape it into an even line with a credit card. Then it's easy to

divide into equal parts - 4 is simple for 25mg, but I've split it

down to as many as 8.

Tip: put the glass down on a table so the edge sticks out over the

side of the table. Then you can easily scrape one of the piles of

powder off the edge of the glass into whatever container you're using.

(Yes, it does look suspiciously like you're doing something else...

I've often worried someone might spot my dusty white credit card and

think I have a serious drug habit!)

I usually split a capsule down when I need to take a dose. I scrape

one of the 25mg piles into a small cup of water, stir thoroughly,

then neck it.

The others I put into little folded pieces of greaseproof paper, and

save for use later.

Getting these little piles of powder back into empty capsules is, as

you say, very very tricky. I have managed it a few times, by scraping

into a piece of clean paper with a single fold in it, and then

tipping.... however, the powder sticks to the paper, so it takes a

lot of tipping and tapping to encourage it to slide down into the

capsule... and it's easy to miss.

So I tend to stick with dissolving it in water or dilute grapefruit

juice.

HTH

[Guest guest]

Hi Doris, thanks for your reply. I've had time to scan thru it, will

read it more thoroughly later (it's after midnight here).

But I can answer this bit:

> I don't understand how you can open a 50 mg

> capsule and divide it into 4ths. Do you just add the 1/4 powder to

> water and drink it. It would be such a tiny amount to work with. I

> don't want to try and fill 4 separate capsules with these tiny

> amounts. That wouldn't be possible, would it?

The DMSA caps we get here are 100mg (don't seem to be able to get any

other sizes) containing powder.

I open a capsule, tip the contents onto a piece of clean glass, then

shape it into an even line with a credit card. Then it's easy to

divide into equal parts - 4 is simple for 25mg, but I've split it

down to as many as 8.

Tip: put the glass down on a table so the edge sticks out over the

side of the table. Then you can easily scrape one of the piles of

powder off the edge of the glass into whatever container you're using.

(Yes, it does look suspiciously like you're doing something else...

I've often worried someone might spot my dusty white credit card and

think I have a serious drug habit!)

I usually split a capsule down when I need to take a dose. I scrape

one of the 25mg piles into a small cup of water, stir thoroughly,

then neck it.

The others I put into little folded pieces of greaseproof paper, and

save for use later.

Getting these little piles of powder back into empty capsules is, as

you say, very very tricky. I have managed it a few times, by scraping

into a piece of clean paper with a single fold in it, and then

tipping.... however, the powder sticks to the paper, so it takes a

lot of tipping and tapping to encourage it to slide down into the

capsule... and it's easy to miss.

So I tend to stick with dissolving it in water or dilute grapefruit

juice.

HTH

[Guest guest]

Hi Doris, thanks for your reply. I've had time to scan thru it, will

read it more thoroughly later (it's after midnight here).

But I can answer this bit:

> I don't understand how you can open a 50 mg

> capsule and divide it into 4ths. Do you just add the 1/4 powder to

> water and drink it. It would be such a tiny amount to work with. I

> don't want to try and fill 4 separate capsules with these tiny

> amounts. That wouldn't be possible, would it?

The DMSA caps we get here are 100mg (don't seem to be able to get any

other sizes) containing powder.

I open a capsule, tip the contents onto a piece of clean glass, then

shape it into an even line with a credit card. Then it's easy to

divide into equal parts - 4 is simple for 25mg, but I've split it

down to as many as 8.

Tip: put the glass down on a table so the edge sticks out over the

side of the table. Then you can easily scrape one of the piles of

powder off the edge of the glass into whatever container you're using.

(Yes, it does look suspiciously like you're doing something else...

I've often worried someone might spot my dusty white credit card and

think I have a serious drug habit!)

I usually split a capsule down when I need to take a dose. I scrape

one of the 25mg piles into a small cup of water, stir thoroughly,

then neck it.

The others I put into little folded pieces of greaseproof paper, and

save for use later.

Getting these little piles of powder back into empty capsules is, as

you say, very very tricky. I have managed it a few times, by scraping

into a piece of clean paper with a single fold in it, and then

tipping.... however, the powder sticks to the paper, so it takes a

lot of tipping and tapping to encourage it to slide down into the

capsule... and it's easy to miss.

So I tend to stick with dissolving it in water or dilute grapefruit

juice.

HTH

[Guest guest]

Interestingly, I had a " functional B vitamin " blood test done here in

the UK (at Biolab). I don't really understand the test, but I believe

it indicates whether your body is actually using any of the B vitamins.

The results were shocking. I have next to no B1, B3 or B6 in me! All

were rated " poor " .

My doc says he does loads of these tests, and never sees ones this bad.

Oh, and I should mention, I was taking quite a bit of B-complex at

the time as per the protocol... about 3 x B-50's a day. So god knows

what's going on. i don't seem to absorb anything I eat, continually

losing weight... so maybe that's to blame for a lot of my problems.

(B vitamins essential to nerve function I believe?)

Anyhow, since that time, I've switched brand of B-complex, and also

been taking additional B1 and B3 (Niacinamide).

Some things might have improved since doing this, although when

you're taking such a huge cocktail of different drugs and supplements

it's hard to be sure what symptoms are responding to what. (gluten

sensitivity also seemed to be an issue for me, and since cutting out

gluten foods, things also seem to have improved).

What's so frustrating is that a year and a bit ago, NONE of this was

a concern... I was super-fit, played lots of sport, I saw my GP every

5 years about something trivial, was never ill... suddenly, I get an

abdominal injury, and six months later my whole life is in tatters.

And despite a lot of expensive tests, no-one can figure out why.

Not happy about it.

> Hi Fats: Thanks for the info. I printed out your post to below.

> I made notes all over my book while re-reading it. I also started a

> list for supplements I must add (if I can force anymore down). I

> remember reading about the niacinimide - but didn't remember why my

> brain knew that I needed it! I have DHEA and Pregnenolone on my list

> and forskolin. I've never heard of the last one - will have to do

> some

> studying on it. I think my husband would like to have me killed -

> cause I'm costing him so much MONEY!! Sometimes I wish he really

> would.

>

> Doris

>

>

>>

>> Hi , just thought I'd mention that on page 67 of Andy's book, he

>> says " if you have autoimmune problems, take niacinimide 500 -1000 mg

>> with each meal and at bedtime, plus DHEA, plus borage oil, plus

>> forskolin.

>>

>> You may already have read this, but sometime it's easy to miss things

>> in his book and thought I'd post it anyway.

>

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[Guest guest]

They never actually found the injury!

Might have helped if I'd rushed off to emergency when I did it of

course. One of those things I assumed would just get better. A year

later, no-one can find anything... although the pain is still there,

and my digestion is screwed.

Although I'm awaiting the results of a capsule endoscopy.

i thought hernia repairs with mesh were pretty successful these days?

(getting a bit OT though :-)

> ,

>

> When you had your abdominal injury, did they repair your

> abdomen with

> any type of plastic or mesh. SOME people are having serious

> reactions to this.

> Just wondered as I am being checked out for this now from a

> hernia repair

> with Marlex mesh.

>

> bill

>

>

>

[Guest guest]

They never actually found the injury!

Might have helped if I'd rushed off to emergency when I did it of

course. One of those things I assumed would just get better. A year

later, no-one can find anything... although the pain is still there,

and my digestion is screwed.

Although I'm awaiting the results of a capsule endoscopy.

i thought hernia repairs with mesh were pretty successful these days?

(getting a bit OT though :-)

> ,

>

> When you had your abdominal injury, did they repair your

> abdomen with

> any type of plastic or mesh. SOME people are having serious

> reactions to this.

> Just wondered as I am being checked out for this now from a

> hernia repair

> with Marlex mesh.

>

> bill

>

>

>