Re: Hi I am new!

April 24, 2002

Hi Jan,

The products you listed are herbs. I cannot or will not endorse these herbs. When you have liver disease many I have heard do take some or all of them. My transplant team when I asked about these products held their breath, and told me NOOOOOOO their is not enough studies to back the herbs. The milk thistle is supposedly used to boost the liver function. Which in my opinion masks whatever else you may have wrong. I truly believe if you have liver disease let your doctors care for you in the conventional way. I also would think taking these products would not mix well with the meds your doctor gives you.

gayle/trans.6-99

galye@... @`

\I/

June 4, 2002

Hi, Jan!

Before posting questions, I suggest you peruse the files on the message board

home. There is a ton of information there to answer most of your questions.

This is a very active message board, so many things you have questions about

have already been discussed extensively, and the archived discussions may answer

your particular question ad nauseum! I often use the search bar first when I

have a question rather than post for exactly that reason.

Hope this is helpful.

[ ] Hi I am new!

Hi I am new and was searching for heavy metals lists and found this

one. I have a nephew who is only 4 and diagnosed as austistic. We

have looked at products like NDF, PCA, and metal-free but decided

that they didn't seem effective after talking to numerous people.

We were looking for a way to chelate heavy metals w/o the trauma

associated with iv chelation therapy especially on a 4 year.

We recently found out about a liquid oral chelation product by a

company in Arizona call Detox-Max from Bioimmune.

Has anyone ever heard of this product or used it? I am trying to

get more info but thought I would post this question. Any help

is greatly appreciate.

-Jan

=======================================================

June 4, 2002

Hi Jan,

> Hi I am new and was searching for heavy metals lists and found this

> one.

good.

> I have a nephew who is only 4 and diagnosed as austistic.

Very nice that you are out looking for help for him

> We

> have looked at products like NDF, PCA, and metal-free but decided

> that they didn't seem effective after talking to numerous people.

> We were looking for a way to chelate heavy metals w/o the trauma

> associated with iv chelation therapy especially on a 4 year.

agreed! I have concerns about it that go way beyond the needle

issue--- but I'll save that unless you WANT to know more.

> We recently found out about a liquid oral chelation product by a

> company in Arizona call Detox-Max from Bioimmune.

> Has anyone ever heard of this product or used it?

no I don't know anything about it. except --um--- gee, is that

the name I just today read on another list?? I'm not sure.

Well..... anyway I don't know anything about it but could make

a couple of guesses based on other products around.

> I am trying to

> get more info but thought I would post this question. Any help

> is greatly appreciate.

> -Jan

The people who write on this list by-and-large are using

ALA and/or DMSA and/or DMPS given orally, in small doses

over a few days at a time. (ALA, DMSA, and DMPS are all

chelation agents.)

There are 2 main protocols that are " popular " :

one is published by DAN! and the other is what is recommended

by Andy Cutler (who writes on this list).

I am generalizing. There are lots of variations, and I do

NOT mean that *anyone* does EXACTLY either one of these 2

protocols-- but these 2 are the " popular " ways that are most

discussed here. There are also a few writers who do other

things. Again, I do not mean to overgeneralize, but at the

same time wish to give you an idea of what is common here.

So: here is my point: my point is that ANOTHER option for you

to consider would be the use of ALA and/or DMSA and/or DMPS

orally. There are many people doing this with MOSTLY good

results. You can read all about it here, and ask questions

about it. You can get information on the 2 protocols I

mentioned, if you want. I am tempted to paste a bunch of

URLs here, but I am afraid I may overwhelm you with too much

information so I won't!!

anyway, good luck with finding info on the other thing, and

keep reading and asking questions about the oral ALA/DMSA/DMPS

if you wish. It is a good option, and there

is lots of experience with it available (on this list).

best wishes,

Moria

June 4, 2002

Hi Jan-- in a google search I found this about Detox-Max:

Each Vial Contains- 1gm of disodium EDTA, Essential Phopholipids

derived from lecithin and 150 mg of magnesium chloride (Beneficial

for healthy cardiovascular functions).

Maybe you could search the board archives for the common name, but

also EDTA and see if anything comes up. Otherwise, do check out the

Files for information about taking DMSA and ALA orally-- no IV's,

which was something you were concerned about.

W

> Hi I am new and was searching for heavy metals lists and found this

> one.

> Has anyone ever heard of this product or used it?

> -Jan

June 4, 2002

> Hi Jan-- in a google search I found this about Detox-Max:

> Each Vial Contains- 1gm of disodium EDTA, Essential Phopholipids

> derived from lecithin and 150 mg of magnesium chloride (Beneficial

> for healthy cardiovascular functions).

Okay, well, if that is right then Jan can also read about EDTA,

which is NOT a good chelator of mercury. But, silly me, why

am I assuming that Jan's nephew has mercury poisoning? I don't

know that!

EDTA is used for " chelation " of cholesterol plaque out of the

veins of people with HEART DISEASE. It is (mistakenly) advertised

as ALSO being good for heavy metals, but I've read that it is

not effective for mercury or lead (for example). Not nearly

as good as ALA (mercury and arsenic) or DMSA (mercury and lead).

Now then, I notice the ingredient list ALSO says:

magnesium chloride (Beneficial

> for healthy cardiovascular functions)

Well, gee, this ALSO sounds like they are doing CHOLESTEROL

chelation. Not the same thing. I bought a book on chelation

once and was disappointed to find it was about heart disease.

It is just another kind of chelation.

best wishes,

Moria

p.s. one place to read about EDTA is here:

/files/ANDY_INDEX

Look in the section on " other chelation agents " , then find

item(s) about EDTA

June 5, 2002

Jan,

The most widely used method is DMSA/ALA, oral chelating agents that grab a

hold of the metals and get them out of the body. DMSA has been used in

children for quite a while and is considered safe IF you use it correctly.

Reading the archives will get you a long way in understanding this.

Barb

[ ] Hi I am new!

>Hi I am new and was searching for heavy metals lists and found this

>one. I have a nephew who is only 4 and diagnosed as austistic. We

>have looked at products like NDF, PCA, and metal-free but decided

>that they didn't seem effective after talking to numerous people.

>We were looking for a way to chelate heavy metals w/o the trauma

>associated with iv chelation therapy especially on a 4 year.

>We recently found out about a liquid oral chelation product by a

>company in Arizona call Detox-Max from Bioimmune.

>Has anyone ever heard of this product or used it? I am trying to

>get more info but thought I would post this question. Any help

>is greatly appreciate.

>-Jan

>

>=======================================================

>

November 17, 2009

>

> i would love to be able to talk to all about my experiences with my stimulator

and have some feed-back too! Thanks Lynda

>

Thank you for the warm welcome! I was surfing the net as i do so often,

and came upon this site. I am always looking for blogs about people living with

their spinalcord stim. I know each and everyone of us have a " story to tell " as

do I! I just wish I had found sites about all the negative inputs, instead I

only found the positives (which I think was only my fault) wanted to only read

about the positive, in hopes that I too would be " one " of the happy ones! I will

tell my story now and boy some would say it's a " whopper " ...but here it

goes....(going back from onset of my injury) at the " young " age of 45, I was

working as a CNA (certified nursing assistant) at a long-term-care facility,

found that dream job and knew this is what I was destin to do, I started to go

to college to get my degree in nursing! Working full-time and full-time student,

I had one year down w/ a 3.8 average, couldn't believe I could actually do

" this " at my age! Yes I was the eldest in my class, and loved every bit of it!

Was so scared to actually go to college, but also knew I had to in order to

full-fill " my dream " and knowing that this was what I wanted..to help others,

and the feeling of being rewarded was daily. Darn it, just got a phone call and

I have to take, so I'll write again after.

November 18, 2009

>

> i would love to be able to talk to all about my experiences with my stimulator

and have some feed-back too! Thanks Lynda

>

Sorry for not geting right back for those of you who are wondering about my

story. Well, one night at work, another cna asked me to help her do a 2 man

assist on a resident, I did (in order to get things done we all have to help

each other!) Well during the transfer the resident who was non-compliant lifted

his legs, the other cna waid oh my god what was that? That was my

shoulder...pop-pop-pop, i thought my shoulder became dislodged, I went right

over to the ER and she said I would have to come back and see DR. so-n-so, well

I did and I couldn't believe the " pain " I was in! He said that I would have to

go to the ortho Dr. that I might have a torn rotator cuff. Went to him and after

amny exrays and mri's which showed a small tear, that I would have to have

surgery to " fix " , my shoulder was in like an up position and would not come back

down, I held my arm up against my chest to help ease the pain. The spasms were

are are unreal!I was but on Lyrica and Lortab, and and have had a couple of

cortizone shots (which did not help) then finally had the surgery 2 months

later.....the Dr. said to me after surgery I have good news but bad news too,

that there was no tear but I have nerve damage! The pain is unreal! The spasms

continued and at times felt like I buckled to my knees! Finally he sent me to

get a nerve test done and during the test, the Dr. said I cannot finish the

tests because of the spasms (one right after the other) then they sent me to a

" pain management specialist " I thought oh my god, i am going to be taught how to

manage my pain? Manage this? He too gave me a couple of cortizone shots (which

never worked anyways) then soon turned into ganglion blocks which was sone by

injections going through your neck! The first one seemed to ease my pain alittle

and could hardly wait for the next one which I could have every couple of weeks.

Well the second one was the absolute worst thing ever! I cried in pain for days!

The nights turned into days, days turned into weeks, I thought no person can go

on like this, no sleep, no pills could fix me! He then said to me in november in

2008 (my onset date of my injury was 4-08) He finally diagnosed me chrionic

dyfunctional regional pain syndrome, what the heck is that? And that I was a

prime canidate for " spinalcord stimulator " which might reduce my pain up to 50%!

For real? Could this be the answer? By then, I would have done anything, just

cut off my shoulder....i had thought very often! Before they could do this I

would have to go under some tests first,,,,I was soon falling into depression,

and working with workmans comp was a whole other story! I went under the tests

which i had passed and even had to go to a phys doctor to make sure I wasn't

crazy! (I felt like I was though) CONT.

November 18, 2009

Lynda, I wish I had something to make all of this better for you. All of us here

know your pain and it is soooo frustrating to go through this day after day. You

and your son will be in my thoughts and prayers.

melissa

Re: Hi I am new!

>

> i would love to be able to talk to all about my experiences with my

stimulator and have some feed-back too! Thanks Lynda

>

Now I have to wait for workmans-comp to approve, which was a bit headache, but

they soon did. Finally I was scheduled for surgery in January 2009. I had done

my homework so I had thought, went on-line to read about this stimulaor and

always read positive things of corse I guess that was what i was looking

for.....positive not negative, i never once thought about blogs, or forums of

people's experinces etc. I actualy was sold when I was a video of a person that

could not do anything but lie in bed and after this stimulator he was doing

jumping-jacks and going doen slides w/his children and that he got his life

back! SOLD! Wow, could this thing really work for me? I was once a very active

person, loved life, helping others, fishing, golfing,hunting, walks,all that

came to an end...I could hardly walk to and from the bathroom without wanting to

pass out! The spasms and pain, could this really work for me? God I hoped, and

prayed! I had to have the " trail " done, that was performed on a monday, and I

couldn't believe the relife it gave me! Soon to go back on friday to have this

new found device which did help me just to have it removed! I said to the Dr. it

is like iving a child a piece of candy just to take it away! He said, it all

looks good and that I could actually keep it for the week-end and come back on

monday to then have it removed (so didn't want monday to come!) Well, now could

hardly wait until I had this thing implanted right into me, that Dr. explained

to me that he inserts the paddle into my neck, my neck? Yes, that where he puts

it, why question, he was the best and it's his job so....................Well

january 2009 came, the day of my surgery " 19th " yah whooooot! (i might add 4-08

was the onset of my injury) I was so scared, but kept an upper chin in hopes of

being somewhat pain free! I was put on Cymbalta and Ambien which were both

denied by workmans comp., and my pay was less then 1/2 of what I was making and

my job, i no longer had one, the hospital was bought out by another local

hospital so I didn't even have a job now! I had to drop out of school, only with

6 months left to graduate, in order to finish school I would need clearence from

the dr. and he was not going to give it to me, i couldn't do my clinicals due to

my injury. What else could happen? If I owned a house and had a car payment, I

would have lost both! Well January finally came and I was going to have surgery!

The company Boston Sci had actually had the " balls " to call me before my surgery

and said they would love for me to come and tell my experince with their product

and " sell " it to others in my region because there is no dr. local and this

might help others! Well that was before my surgery! OKAY, deep breath........I

had the surgery, and thank god for morphine! My blod pressure dropped to 60 over

40 and they said they could not give me anything! OMG the pain was unreal! My

surgery urned into a 4 1/2 hour surgery, you see, they had to remove bone out of

my neck in-order for the " paddle " to fit! For real? No one ever said anything to

me about removing bone! There was no neck-brace no nothing! It hurt like hell! I

truly wanted to die!Please give me a gun, I can't do this anymore! I stayed in

the hospital for 3 days and just before I was discharged I began pulling the

hair-clumps our of my hair that was cut up the nap of my neck for the incision

for in " paddle " implant. Well, rubbing my head, what's this? It was a staple

that was left in my head just above my right ear, I was told you don't want to

know why it was there. They removed it and I was then met by Boston Sci to get

programmed. Well she tryed and tryed and nothing, she said maybe the swelling in

my neck w/ the bone removal and all that they would have to programm me in 6

weeks....what? After all this i was still going to have to wait. They sent me

home with OXYCODONE......thank god for this drug! The healing process was very

slow and hurt even worse than before! Now added pain, on-top of pain! I would

hold my pee because it even hurt to walk, I couldn't hold my neck! It was awful!

What have I done? No-one ever told me about this part! Well after 6 long weeks,

I was finally going to get programmed! Well, she tried and she tried, nothing!

She said I needed to get an x-ray to see if all is okay, this was done at my

dr.s ofice so he came in with the results, ummmm, well, this rarely happens but

Lynda, well, we need to go back

in!!!!!!!!!!!!WHAT???????????????????????!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He showed

me the x-ray and the paddle looked like a fish-hook! it literally shifted like

one! Oh god I as going to have to go through this all over again! i truly wanted

to die! well workmans-comp denied my surgery and he and my dr had to ight this

one out, i didn't care who....but someone needed o fix me! I really don't know

how it happened but finally got a call and my next surgery was in May, yes I had

to walk around with this product in me for 4 months not working! how is a person

to stay not from going CRAZY! JUST HELP ME I PLEADED! Someone finally said to me

that i needed to get a lawyer, someone who will fight for me, I just didn't have

the strength anymore for anything!My last words to were orkmans comp, I hope you

will atleast help me with my school loan, which would be soon upon me with NO

degree......her reply, NO it's not in our POLICY! Okay, 10,000 worth in school

loans after my grants are you kidding me? Well, now May finally came and I was

having the dreadful surgery again, in hopes of feeling something from this

electronic device that I now had no longer faith in. Once again, my surgery

turned into another 4 1/2 hour surgery due to the scar tissue and all.......well

I can remember feeling something! Yes, this is finally working! Again thanks to

morphine, they now sent me home with new scrip o OXYCODONE and now Skelactin

(800mg) to help w/spasms and wait, feeling my head, yet another staple was left

in! NOWAY! How can this be? As a nursing student I knew that what goes in must

come out and that all things are accounted for, are you kidding me? So yes they

had to remove that one too! What idiots! Finally this electronic device is in

and the pain is and was awful! Yes it helps me ut I think had I know what I was

in for? I don't know what i truly would have done. It has now been almost month

sice my last surgery and though my pain is now somedays down to a 6 9on a pain

scale on 0-10, thanks to oxycodone and the skelaktin i get through my days. i

just sarted physical therapy, a some days are harder then others and well some

days I just cannot do it and won't. The pain again surrounds me daily, why am I

going to do something that hurts me more? They truly don't understand what I am

going through on an average day! they just performed an evaluation on me and

stated due to absances p/t cannot blah,blah.blah and suggest I go 4 times per

week! There are days that I go just from by bed to the couch and the couch to

the bathroom, and that's it. People who live with chronic pain understand me i

am sure, but those who don't....uuuggghhhh, sometimes I wish my pain on them so

they would know where I am coming from (only for 5 minutes too) easily done.

Depressed am I? ABSOLUTLY! I want my life back! They have me a temp. 100%

partial disabled, what the heck is that? Now I must say, the phone call from

Boston Sci has yet to come, you know remember, come and talk about your

experince, yeah right! They probably know better! I guess I have been

forgotten...yeah right. I now cannot afford Cymbalta to help my depression due

to being denied through workmans comp, and about physical therapy they also

denied that too with my neck, they say it has nothin to due with my injury, are

you kidding me once again? I cannot afford to pay for insurance so I hope

nothing else happens to me! Cobra wants 400.00 a month, and that my friend is

out of the question, and the state says I make to much money for medicade. My

monthly income is 1,560.00 a month, so with that, I pay my rent 600.00, my

electric & gas 200.00, my phone and cable 125.00, my car insurance, 100.00 a

month, food for the month, and then my toiletries,gas for my car and such so

where do i come up with that 400? I am a single mom and have a 16 year old

son.................It is breaking my heart for him too! Saying no, not right

now, and sorry to him...now with christmas which is almost upon us.....well, I

just wish December wouldn't come. I just want to get better so I can go back to

school and work so I can make a better living for the both of us. Is there light

at the end of the tunnel? i really don't think I can do this too much longer!

November 19, 2009

Lynda, I read your story and so many things were things that I could

relate to. I was a CNA many years ago and helped another CNA lift a

resident into a tub for training. That was my beginning.

I am unable to write as much as you have but have had many of the

meds, injections, surgery with fusion plates and screws which only

everything getting worse. My back got worse then approx. three years

later I got neuropathy in my feet. I have seen three neurologists, a

pain management Dr. for epidurals that did not work, had radio

frequency and just this past July I started my MRI after seeing a

neurosurgeon to begin the process to have a stimulator put in. I saw

the psyciatrist for his approval. There were a few more Drs in this

midst over ten years. Anyway I had the stimulator put in for the

trial on Sept. 14th and it was taken out two days later. I had to

turn it up so high as it would not vibrate past my ankles for the

neuropathy and did not help my back at all.

I do not have the ability to make this as interesting as you did but

what your email did was help me realize that it does not work for

everyone and I am happy for those that it does. I was relieved that

it was out so I would not have to go through anymore. I don't think

this group is for just the ones that it works for but as I said your

story made me feel better in the sense that I did not go through any

more suffering.

My PCP wants me to see another pain managment Dr but I think he knows

there is no relief except for meds but he says the " gestapo " is

watching the Drs. like him that give out narcotics. He is such a

great Dr. and has helped me as much as he can so I will go as soon as

I can get in so he does not get in trouble. I use the fentanyl

patches, lyrica and many, many fiorinal with codeine pills.

Thanks for writing and I do wish you the best. I wish the best for

those looking for help with the SCS as it evidently helps some. There

are some on here that it has and they are very helpful in explaining

things.

Lois

On 11/18/09, lynda s <lynda01lee@...> wrote:

>

>>

>> i would love to be able to talk to all about my experiences with my

>> stimulator and have some feed-back too! Thanks Lynda

>>

> Sorry for not geting right back for those of you who are wondering about my

> story. Well, one night at work, another cna asked me to help her do a 2 man

> assist on a resident, I did (in order to get things done we all have to help

> each other!) Well during the transfer the resident who was non-compliant

> lifted his legs, the other cna waid oh my god what was that? That was my

> shoulder...pop-pop-pop, i thought my shoulder became dislodged, I went right

> over to the ER and she said I would have to come back and see DR. so-n-so,

> well I did and I couldn't believe the " pain " I was in! He said that I would

> have to go to the ortho Dr. that I might have a torn rotator cuff. Went to

> him and after amny exrays and mri's which showed a small tear, that I would

> have to have surgery to " fix " , my shoulder was in like an up position and

> would not come back down, I held my arm up against my chest to help ease the

> pain. The spasms were are are unreal!I was but on Lyrica and Lortab, and and

> have had a couple of cortizone shots (which did not help) then finally had

> the surgery 2 months later.....the Dr. said to me after surgery I have good

> news but bad news too, that there was no tear but I have nerve damage! The

> pain is unreal! The spasms continued and at times felt like I buckled to my

> knees! Finally he sent me to get a nerve test done and during the test, the

> Dr. said I cannot finish the tests because of the spasms (one right after

> the other) then they sent me to a " pain management specialist " I thought oh

> my god, i am going to be taught how to manage my pain? Manage this? He too

> gave me a couple of cortizone shots (which never worked anyways) then soon

> turned into ganglion blocks which was sone by injections going through your

> neck! The first one seemed to ease my pain alittle and could hardly wait for

> the next one which I could have every couple of weeks. Well the second one

> was the absolute worst thing ever! I cried in pain for days! The nights

> turned into days, days turned into weeks, I thought no person can go on like

> this, no sleep, no pills could fix me! He then said to me in november in

> 2008 (my onset date of my injury was 4-08) He finally diagnosed me chrionic

> dyfunctional regional pain syndrome, what the heck is that? And that I was a

> prime canidate for " spinalcord stimulator " which might reduce my pain up to

> 50%! For real? Could this be the answer? By then, I would have done

> anything, just cut off my shoulder....i had thought very often! Before they

> could do this I would have to go under some tests first,,,,I was soon

> falling into depression, and working with workmans comp was a whole other

> story! I went under the tests which i had passed and even had to go to a

> phys doctor to make sure I wasn't crazy! (I felt like I was though) CONT.

>

November 20, 2009

> >

> > i would love to be able to talk to all about my experiences with my

stimulator and have some feed-back too! Thanks Lynda

> >

> Now I have to wait for workmans-comp to approve, which was a bit headache,

but they soon did. Finally I was scheduled for surgery in January 2009. I had

done my homework so I had thought, went on-line to read about this stimulaor and