New to the Group

June 1, 2008

Hi - I too had an allergic reaction(anaphalactic) to doxy, so I guess there

may be some of us who can't take doxy. - Robin

In a message dated 6/1/2008 7:54:08 A.M. Pacific Daylight Time,

israel@... writes:

Hi Kim,

Are you sure that it was allergic reaction? Many times this is a sign of

a herx. When I first started doxy I got so sick for about 3 weeks and

finally it got better. It is sad but you do have to suffer a little while

treating lyme. Google Lyme and herx reaction. You will read about what

this is?

_____

From: _ @Lyme_Aid_BuhLym_

(mailto: )

[mailto:_ @Lyme_Aid_BuhLym_

(mailto: ) ] On Behalf Of krienitz

Sent: Saturday, May 31, 2008 11:30 AM

_ @Lyme_Aid_BuhLym_

(mailto: )

Subject: [ ] New to the group

Hi,

I am new to the group. I had been told 20 years ago that I probably

had MS. Symptoms on and off, but the last 3-5 years progressively

worse - legs very weak - very difficult to walk right now. Anyway, I

have had a feeling it was Lyme Disease and had a few people (physics,

energy healers, others) tell me that they thought I had Lyme disease.

Tested locally, came back negative, but I knew the history of false

negatives. I sought out a lyme specialist and then sent lab to Igenex

and It came back positive. My doctor immediately put me on

doxicycline and I had an allergic reaction - she wants me to try

minocin next. She also suggested I look into the Buhner protocol. I

ordered the Healy Lyme book, but it is not in yet. I want to get a

jump on ordering supplements - can anyone give me a heads up to the

ones that I should start with and which brands they recommend?

Thanks,

Kim

[Non-text portions of this message have been removed]

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

June 1, 2008

It's good to have you here I am sure in no time you will know more then most

here. & nbsp; After many Dr.'s I asked my Dr. if he would look into treating me

and stop sending me to Endo's. & nbsp; He told me he would see the next time I

seen him he was up on everything. & nbsp; If he can do this you sure can. & nbsp;

You should go to Dr. 's site later when you have time and he I am sure will

be of a great help to you. & nbsp; A lot of the men I help go to MI. to see him

then he tests and treats them by Email or he will even work with your Dr. over

the phone I am sure you can find one to do this for you. & nbsp; He is one of the

best at this. & nbsp; And he trains a lot of Dr. on testing and treating men with

low T.

& nbsp;

Also I don't even feel you need to test your E2 I can tell your high and it's

going up or spiking after your shot. & nbsp; You can do some Indolplex/DIM it's

slow OTC. & nbsp; Here is a link to what I find is the best brand to buy.

http://www.ritecare.com/prodsheets/PHY-15336.html

& nbsp;

So if you have like most of us lost your night time and morning wood every

morning. & nbsp; Get this take one at dinner time and in less then 2 weeks you

will have night time wood so strong it will wake you. & nbsp; When this happens I

find my E2 is at it's best level. & nbsp; I had lost my morning wood for over 35

yrs and was shocked to see this happen. & nbsp; Now even at age 64 if I keep my E2

at about 20 pg/ml I have wood every morning. & nbsp; So I use this as a gage to

not go to low. & nbsp; So if you get this Indolplex/DIM and it works then you lose

your wood this means your going to low and for most you can take Viagra and it

will not work when your to low or to high. & nbsp; So when you lose your wood on

this stop taking it until wood comes back then that day go back on it but cut

the tablet in half. & nbsp; You will be shocked how good this works an as time

goes on your libido will come back up.

http://www.ritecare.com/prodsheets/PHY-15336.html

& nbsp;

We also have a links and files section full of links to info about all kinds of

thing about low T and the problems with it. & nbsp; It's on the left side of the

screen at the home page. & nbsp; Her is a link about DIM

http://www.dimfaq.com/index.htm

Co-Moderator & amp;quot;Don & amp;#39;t believe anything you hear and only half of

what you see. & amp;quot;

Phil

From: Brown & lt;brbrtsn1@... & gt;

Subject: Re: New to the group

Date: Sunday, June 1, 2008, 4:41 PM

Phil, thanks for the links. That looks very educational and I'm sure

I'll learn a few things. Unfortunately, I don't seem to have an endo

who appears to be very up to date on HRT for pt's like myself. I

wasn't even aware of the need to do E2 baseline levels and I'm fairly

certain he isn't either since he never took one on me. I think I

mentioned aromatase inhibition at the beginning of my therapy and he

shooed the issue away fairly quickly. Ironically enough, he hasn't

done a follow up free Testosterone level on me since I started therapy

4 months ago. Originally, I was doing 300mg/3 week injections in his

office but insisted on giving them myself. The mood swings were bad

enough that I changed to 200mg/2 week injections but I'm fairly

certain I'm going to switch to weekly when my current cycle is over.

Anyway, I look forward to reading the links and thanks for the

welcome. -Brown

& gt;

& gt; From: Brown brbrtsn1@...

& gt; Subject: New to the group

& gt;

& gt; Date: Sunday, June 1, 2008, 12:20 PM

& gt;

& gt; Hey guys, I'm new to the group and just wanted to say thanks for the

& gt; resource. I'm 33 yo and have idiopathic secondary hypogonadism for

& gt; some unknown reason. I've had MRI and many tests done and pituitary

& gt; looks normal but LH and FSH are bottomed out. I had originally sought

& gt; out a doctor for chronic fatigue, depression and low libido and

& gt; difficulty with maintaining erections. I'd get erect during foreplay

& gt; but would lose it when it mattered which was very disconcerting for

& gt; me. The thing is that I don't know how long this has been going on

& gt; because I've been out of relationships for a few years and wouldn't

& gt; have even thought to go see a doctor without having the sexual side

& gt; effects of low T while being in a relationship. Anyway, I've been on T

& gt; injections for 4 months now and definitely noticed an improvement in

& gt; all my symptoms. I'm also on a low dose of thyroid medication because

& gt; my T4 level was a little low. I think my free Testosterone level was

& gt; around 150 and needless to say I felt pretty bad. So far I'm pretty

& gt; bummed about having to take testosterone injections for the rest of my

& gt; life and have no idea if this will make me infertile or not. I had a

& gt; semen analysis back before the injections which was normal but I'm

& gt; sure I'd probably need to go on HCG if I ever wanted to have kids. I

& gt; can't imagine how I'll broach the subject with a potential bride but

& gt; I'll deal with that when it comes. My only problem right now is that

& gt; my libido is up and down. When it's up, I can function like a porn

& gt; star but when it's down I feel an utter and complete lack of sexual

& gt; drive and can't maintain an erection at all. It's so incredibly

& gt; frustrating. What's more frustrating is that it doesn't make sense

& gt; when I have the symptoms. I would expect the symptoms to come back

& gt; when I'm on my low end of the shot cycle but I gave myself a shot last

& gt; Thursday (200mg, upper gluteal) and still have a real lack of libido

& gt; today (Sunday). However, my last 2 week cycle was great and I had

& gt; great libido.

& gt;

& gt; Anyway, sorry to ramble. I realize that I could have much worse

& gt; endocrine abnormalities. I'm finishing my last yr of med school and

& gt; the whole experience had made me that much more sensitive to patients

& gt; I suppose.

& gt;

& gt; I was curious if any of you who are single males had frozen your sperm

& gt; when going on HRT? My endo has been pushing me pretty hard to do this

& gt; but I have relented due to the cost and I can't really afford it at

& gt; this point.

& gt;

& gt; Also, can you guys related to the up and down libido while on HRT?

& gt; I've been wondering if perhaps my injection was wrong or something but

& gt; I can't seem to think of anything out of the ordinary that I did when

& gt; injecting. I think I'll try gluteal injections next week or perhaps

& gt; weekly injections since some of you seem to think that's the best way.

& gt;

& gt; Anyway, any advice or feedback would be appreciated. I guess the

& gt; biggest thing that depresses me at this point is the thought of having

& gt; to give myself injections for the rest of my life and the thought of

& gt; not being able to have children or losing a girlfriend some day when I

& gt; have to tell her that there might be issues with me having children.

& gt; Luckily I've got a very understanding gf at the moment. Ah well, I

& gt; guess I can't cry too much over this when Type 1 DBM pt's have to give

& gt; injections every day!

& gt;

& gt; Thanks for listening,

& gt; Brown.

& gt;

June 1, 2008

Thanks - I will look into that. Since I am new, I am just learning, but

that is encouraging.

Kim

jamie <israel@...> wrote:

Hi Kim,

Are you sure that it was allergic reaction? Many times this is a sign of

a herx. When I first started doxy I got so sick for about 3 weeks and

finally it got better. It is sad but you do have to suffer a little while

treating lyme. Google Lyme and herx reaction. You will read about what

this is?

_____

From:

[mailto: ] On Behalf Of krienitz

Sent: Saturday, May 31, 2008 11:30 AM

Subject: [ ] New to the group

Hi,

I am new to the group. I had been told 20 years ago that I probably

had MS. Symptoms on and off, but the last 3-5 years progressively

worse - legs very weak - very difficult to walk right now. Anyway, I

have had a feeling it was Lyme Disease and had a few people (physics,

energy healers, others) tell me that they thought I had Lyme disease.

Tested locally, came back negative, but I knew the history of false

negatives. I sought out a lyme specialist and then sent lab to Igenex

and It came back positive. My doctor immediately put me on

doxicycline and I had an allergic reaction - she wants me to try

minocin next. She also suggested I look into the Buhner protocol. I

ordered the Healy Lyme book, but it is not in yet. I want to get a

jump on ordering supplements - can anyone give me a heads up to the

ones that I should start with and which brands they recommend?

Thanks,

Kim

June 1, 2008

,

Maybe you might know: Would a hive type rash that itches be a sign of a herx?

Kim

jamie <israel@...> wrote:

Hi Kim,

Are you sure that it was allergic reaction? Many times this is a sign of

a herx. When I first started doxy I got so sick for about 3 weeks and

finally it got better. It is sad but you do have to suffer a little while

treating lyme. Google Lyme and herx reaction. You will read about what

this is?

_____

From:

[mailto: ] On Behalf Of krienitz

Sent: Saturday, May 31, 2008 11:30 AM

Subject: [ ] New to the group

Hi,

I am new to the group. I had been told 20 years ago that I probably

had MS. Symptoms on and off, but the last 3-5 years progressively

worse - legs very weak - very difficult to walk right now. Anyway, I

have had a feeling it was Lyme Disease and had a few people (physics,

energy healers, others) tell me that they thought I had Lyme disease.

Tested locally, came back negative, but I knew the history of false

negatives. I sought out a lyme specialist and then sent lab to Igenex

and It came back positive. My doctor immediately put me on

doxicycline and I had an allergic reaction - she wants me to try

minocin next. She also suggested I look into the Buhner protocol. I

ordered the Healy Lyme book, but it is not in yet. I want to get a

jump on ordering supplements - can anyone give me a heads up to the

ones that I should start with and which brands they recommend?

Thanks,

Kim

June 1, 2008

I didn't have an allergic reaction to it, but it just killed my already

sensitive stomach.

###

From: sfrobink@... & lt;sfrobink@... & gt;

Subject: Re: [ ] New to the group

Date: Sunday, June 1, 2008, 2:40 PM

Hi - I too had an allergic reaction(anaphalact ic) to doxy, so I guess there

may be some of us who can't take doxy. - Robin

June 2, 2008

Hey Brown and welcome to the group - my guess is that you are on a swing of E2

conversion. First your dosage of 200 mg is way too high - this will definitely

cause conversion to E2. Go to 100 mg every 7 days. Then most of us have to use

an aromatase inhibitor (i.e. arimidex) to control even at that level. It's a

real balancing act. I noted in a later post by you that your Endo poopoo'd the

aromatase inhibitor - that should be a sign of their knowledge in the area -

suggest finding one who will be more & nbsp;williing to look at the medical data

and not play & nbsp;God & nbsp;- please note this as you enter the medical field

- & nbsp; a good doctor is hard to find that will listen, look at medical testing

information & nbsp;and not just go by the book (shich is probably out of

date) & nbsp;- Good Luck

& nbsp;

Arkansas

From: Brown & lt;brbrtsn1@... & gt;

Subject: New to the group

Date: Sunday, June 1, 2008, 11:20 AM

Hey guys, I'm new to the group and just wanted to say thanks for the

resource. I'm 33 yo and have idiopathic secondary hypogonadism for

some unknown reason. I've had MRI and many tests done and pituitary

looks normal but LH and FSH are bottomed out. I had originally sought

out a doctor for chronic fatigue, depression and low libido and

difficulty with maintaining erections. I'd get erect during foreplay

but would lose it when it mattered which was very disconcerting for

me. The thing is that I don't know how long this has been going on

because I've been out of relationships for a few years and wouldn't

have even thought to go see a doctor without having the sexual side

effects of low T while being in a relationship. Anyway, I've been on T

injections for 4 months now and definitely noticed an improvement in

all my symptoms. I'm also on a low dose of thyroid medication because

my T4 level was a little low. I think my free Testosterone level was

around 150 and needless to say I felt pretty bad. So far I'm pretty

bummed about having to take testosterone injections for the rest of my

life and have no idea if this will make me infertile or not. I had a

semen analysis back before the injections which was normal but I'm

sure I'd probably need to go on HCG if I ever wanted to have kids. I

can't imagine how I'll broach the subject with a potential bride but

I'll deal with that when it comes. My only problem right now is that

my libido is up and down. When it's up, I can function like a porn

star but when it's down I feel an utter and complete lack of sexual

drive and can't maintain an erection at all. It's so incredibly

frustrating. What's more frustrating is that it doesn't make sense

when I have the symptoms. I would expect the symptoms to come back

when I'm on my low end of the shot cycle but I gave myself a shot last

Thursday (200mg, upper gluteal) and still have a real lack of libido

today (Sunday). However, my last 2 week cycle was great and I had

great libido.

Anyway, sorry to ramble. I realize that I could have much worse

endocrine abnormalities. I'm finishing my last yr of med school and

the whole experience had made me that much more sensitive to patients

I suppose.

I was curious if any of you who are single males had frozen your sperm

when going on HRT? My endo has been pushing me pretty hard to do this

but I have relented due to the cost and I can't really afford it at

this point.

Also, can you guys related to the up and down libido while on HRT?

I've been wondering if perhaps my injection was wrong or something but

I can't seem to think of anything out of the ordinary that I did when

injecting. I think I'll try gluteal injections next week or perhaps

weekly injections since some of you seem to think that's the best way.

Anyway, any advice or feedback would be appreciated. I guess the

biggest thing that depresses me at this point is the thought of having

to give myself injections for the rest of my life and the thought of

not being able to have children or losing a girlfriend some day when I

have to tell her that there might be issues with me having children.

Luckily I've got a very understanding gf at the moment. Ah well, I

guess I can't cry too much over this when Type 1 DBM pt's have to give

injections every day!

Thanks for listening,

Brown.

June 2, 2008

Kim,

Are you seeing an LLMD? I got tons of weird rashes when I first got sick.

They thought I had lupus because they were like long oblong raised rashes

kind of red. Then I also got like little red pimples all over my abdominal

area that that hurt to touch. Our skin takes on the release of toxins when

the rest of the body can't handle them. I think that is why when people

have allergic reactions the skin will get hives. Just my theory. I

definitely would go with your gut. If your whole body broke out in hives,

then yes I would assume that you can't handle the drug you are taking. A

good LLMD can switch these around for you. I notice that sometimes I get

the feeling of bugs crawling all over me at night and I keep itching like

crazy. So, I hope you are doing okay. Please update us on your progress.

Blessings,

_____

From:

[mailto: ] On Behalf Of Kim Krienitz

Sent: Sunday, June 01, 2008 9:40 AM

Subject: RE: [ ] New to the group

,

Maybe you might know: Would a hive type rash that itches be a sign of a

herx?

Kim

jamie <israel@bendbroadban <mailto:israel%40bendbroadband.com> d.com> wrote:

Hi Kim,

Are you sure that it was allergic reaction? Many times this is a sign of

a herx. When I first started doxy I got so sick for about 3 weeks and

finally it got better. It is sad but you do have to suffer a little while

treating lyme. Google Lyme and herx reaction. You will read about what

this is?

_____

From: @ <mailto: %40>

[mailto: @ <mailto: %40>

] On Behalf Of krienitz

Sent: Saturday, May 31, 2008 11:30 AM

@ <mailto: %40>

Subject: [ ] New to the group

Hi,

I am new to the group. I had been told 20 years ago that I probably

had MS. Symptoms on and off, but the last 3-5 years progressively

worse - legs very weak - very difficult to walk right now. Anyway, I

have had a feeling it was Lyme Disease and had a few people (physics,

energy healers, others) tell me that they thought I had Lyme disease.

Tested locally, came back negative, but I knew the history of false

negatives. I sought out a lyme specialist and then sent lab to Igenex

and It came back positive. My doctor immediately put me on

doxicycline and I had an allergic reaction - she wants me to try

minocin next. She also suggested I look into the Buhner protocol. I

ordered the Healy Lyme book, but it is not in yet. I want to get a

jump on ordering supplements - can anyone give me a heads up to the

ones that I should start with and which brands they recommend?

Thanks,

Kim

June 2, 2008

Welcome - you'll find a good home here, with compassionate and wise

listeners, readers and counsel...

I tried and failed with gels, patches, shot and creams, only to find

success with Clomid. This might be an option if your doctor is

willing - for me, it was this or suffer. I have had great results and

levels since, with no side effects. It might take awhile to

" re-start " your pituitary, if you were to stop the shots, but Clomid

definitely will get your testis to work (if they can).

Of course, HCG might be your best option here for healthy testis and

sperm. Many here have found it quite helpful and most endos. will use

HCG with T for men desiring an offspring.

Blessings,

Bill

>

> Hey guys, I'm new to the group and just wanted to say thanks for the

> resource. I'm 33 yo and have idiopathic secondary hypogonadism for

> some unknown reason. I've had MRI and many tests done and pituitary

> looks normal but LH and FSH are bottomed out. I had originally sought

> out a doctor for chronic fatigue, depression and low libido and

> difficulty with maintaining erections. I'd get erect during foreplay

> but would lose it when it mattered which was very disconcerting for

> me. The thing is that I don't know how long this has been going on

> because I've been out of relationships for a few years and wouldn't

> have even thought to go see a doctor without having the sexual side

> effects of low T while being in a relationship. Anyway, I've been on T

> injections for 4 months now and definitely noticed an improvement in

> all my symptoms. I'm also on a low dose of thyroid medication because

> my T4 level was a little low. I think my free Testosterone level was

> around 150 and needless to say I felt pretty bad. So far I'm pretty

> bummed about having to take testosterone injections for the rest of my

> life and have no idea if this will make me infertile or not. I had a

> semen analysis back before the injections which was normal but I'm

> sure I'd probably need to go on HCG if I ever wanted to have kids. I

> can't imagine how I'll broach the subject with a potential bride but

> I'll deal with that when it comes. My only problem right now is that

> my libido is up and down. When it's up, I can function like a porn

> star but when it's down I feel an utter and complete lack of sexual

> drive and can't maintain an erection at all. It's so incredibly

> frustrating. What's more frustrating is that it doesn't make sense

> when I have the symptoms. I would expect the symptoms to come back

> when I'm on my low end of the shot cycle but I gave myself a shot last

> Thursday (200mg, upper gluteal) and still have a real lack of libido

> today (Sunday). However, my last 2 week cycle was great and I had

> great libido.

>

> Anyway, sorry to ramble. I realize that I could have much worse

> endocrine abnormalities. I'm finishing my last yr of med school and

> the whole experience had made me that much more sensitive to patients

> I suppose.

>

> I was curious if any of you who are single males had frozen your sperm

> when going on HRT? My endo has been pushing me pretty hard to do this

> but I have relented due to the cost and I can't really afford it at

> this point.

>

> Also, can you guys related to the up and down libido while on HRT?

> I've been wondering if perhaps my injection was wrong or something but

> I can't seem to think of anything out of the ordinary that I did when

> injecting. I think I'll try gluteal injections next week or perhaps

> weekly injections since some of you seem to think that's the best way.

>

> Anyway, any advice or feedback would be appreciated. I guess the

> biggest thing that depresses me at this point is the thought of having

> to give myself injections for the rest of my life and the thought of

> not being able to have children or losing a girlfriend some day when I

> have to tell her that there might be issues with me having children.

> Luckily I've got a very understanding gf at the moment. Ah well, I

> guess I can't cry too much over this when Type 1 DBM pt's have to give

> injections every day!

>

> Thanks for listening,

> Brown.

>

June 3, 2008

Hi Kathy,

I'm sorry you had this happen but it's best not to dwell on the past and see

what can be done. I do not profess to be an expert and we also made many

mistakes.

Although we never used IV's, I have been around for awhile and can report on a

compilation of comments I have heard concerning cases such as you report:

There is, as I'm sure you know no guarantee that damage can be undone. Having

said that I have heard Andy say that the best cure for bad chelation is proper

chelation meaning using oral chelators at 1/8-1/4 mg per lb with regard for

their half-life. This means Dmsa every 4 hours day and night, Ala every 3 hours

during the day, every 4 at night and Dmps every 8 hours.

I have also heard that it is sometimes a little rough in the beginning and that

you should look at the progress over a series of 10 or so rounds, not the usual

1 or 2 to determine if what you are doing is working.

Hopefully someone who has been through your exact situation will step up and add

something more useful. I wish you the best.

[ ] New to the Group

I'm a parent of a 5 year old ASD boy and have been researching biomed for 2.5

years. Yes I

made the mistake of doing IV-DMPS with a DAN and have tried much of the 2006

DAN

protocol. I state the year because there have been additions that I haven't

tried. My son is

a non-responder actually could be getting worse. Not until I tried homeopathy

this

Christmas did I realize that it could have been the IV-DMPS that could have

made him

worse. So here I am trying to learn about the AC protocol. From reading on

here for the

past week it seems like this is an intense group. I am not trying to start any

arguements I

would just like to hear from parents who have done this protocol and actually

found that it

was a piece of the puzzle for their kids. I would also like to know if there

is anyone on

here that tried this protocol and found that it made things worse. I

understand that

because it is low and slow it shouldn't but my kid is about as sensitive as it

gets. I am

under the guidance of a great doctor in Seattle and was about to start with

6.25 mg of

DMSA every 4 hours for 7 days straight and then 7 days off and start again but

after the

2nd day I couldn't and my son couldn't tolerate it. His stims were absolutely

uncontrollable. We have Epicor and Del Immune V and Biotin in his supplement

list but I

am unsure if it is yeast or if he cannot tolerate the DMSA. My doc has

prescribed Tenex to

keep him comfortable while we chelate. I tried 1 mg but it didn't stop his

hyper stimming

just made him take a nap (very unusual). I know there has been much discussion

on how

to give advice and I will tell you I am going through my own issues because of

feeling like

a failure to my kid BUT I would like to hear from others whether they had a

really tough

nut kid (non-verbal- high verbal stimming - not retaining ABA therapy- intense

hand

stimming - eating his shirt -biting- giggling/drunkeness) and whether they saw

some

gains with this protocol. I am not a parent who wants to ease the work for a

group home. I

want recovery. Please let me know if it was intense at the beginning of the

DMSA rounds

and then got better.

Kathy in BC

June 3, 2008

Yes its that I am working with but right now I don't even know the right

questions to

ask her. My son's diet is excellent BUT I am pretty sure he is not retaining the

goodness

from his diet. gave us HCL in a tablet form for him to digest better. Her

diagnosis on

the first day of meeting him was abnormal metabolism but I guess that is normal

when a

kid has metals/bacteria/viruses.

He is organic Casein free/gluten/corn/soy and am now trying Feingold diet. Diet

doesn't

seem to affect him. He is beyond diet. He has been strictly adhering to it for

2.5 years. I

am lucky in that way. An example of lunch consists of acorn squash chicken

asparagus

avocado and some brown rice. And no dental fillings and neither do I. I would

love to hear

from others who have been through this. Did you just push through the increased

stimming?

Kathy

>

> Hi Kathy,

> Welcome to the list. It is intense right now, but not always.

in Seattle

uses Andy's protocol last I heard. What's your son's diet like? I presume he

has NO

mercury amalgam dental fillings.

> S S

>

> New to the Group

> Posted by: " kathd9 " kathyd3@... kathd9

> Tue Jun 3, 2008 9:54 am (PDT)

> I'm a parent of a 5 year old ASD boy and have been researching biomed for 2.5

years.

Yes I

> made the mistake of doing IV-DMPS with a DAN and have tried much of the 2006

DAN

> protocol. I state the year because there have been additions that I haven't

tried. My son

is

> a non-responder actually could be getting worse. Not until I tried homeopathy

this

> Christmas did I realize that it could have been the IV-DMPS that could have

made him

> worse. So here I am trying to learn about the AC protocol. From reading on

here for the

> past week it seems like this is an intense group. I am not trying to start any

arguements

I

> would just like to hear from parents who have done this protocol and actually

found that

it

> was a piece of the puzzle for their kids. I would also like to know if there

is anyone on

> here that tried this protocol and found that it made things worse. I

understand that

> because it is low and slow it shouldn't but my kid is about as sensitive as it

gets. I am

> under the guidance of a great doctor in Seattle and was about to start with

6.25 mg of

> DMSA every 4 hours for 7 days straight and then 7 days off and start again but

after the

> 2nd day I couldn't and my son couldn't tolerate it. His stims were absolutely

> uncontrollable. We have Epicor and Del Immune V and Biotin in his supplement

list but I

> am unsure if it is yeast or if he cannot tolerate the DMSA. My doc has

prescribed Tenex

to

> keep him comfortable while we chelate. I tried 1 mg but it didn't stop his

hyper

stimming

> just made him take a nap (very unusual). I know there has been much discussion

on

how

> to give advice and I will tell you I am going through my own issues because of

feeling

like

> a failure to my kid BUT I would like to hear from others whether they had a

really tough

> nut kid (non-verbal- high verbal stimming - not retaining ABA therapy- intense

hand

> stimming - eating his shirt -biting- giggling/drunkeness) and whether they saw

some

> gains with this protocol. I am not a parent who wants to ease the work for a

group

home. I

> want recovery. Please let me know if it was intense at the beginning of the

DMSA rounds

> and then got better.

> Kathy in BC

>

> _______________________________________________

> Join Excite! - http://www.excite.com

> The most personalized portal on the Web!

>

June 3, 2008

Hi Kathy, welcome.

I'm sorry you are having troubles. My son is also 5. The best thing

I did for him so far was sort out the diet. He is GFCF soy free, MSG

free, artificial flavor/color and preservative free...so pretty much

just whole foods. Don't know what your son's diet looks like, but

removing the foods that trigger the immune system (whether allergies

or sensitivities) is a MUST. We have experienced some of the same

symptoms you have. Sometimes I know what it is (yeast, new

supplement/food) and others I don't know what it is (probably

viral). In my opinion, a very natural whole foods diet is the place

to start with Andy's Chelation protocol as the second thing to do.

Before starting Andy's protocol, make sure to pump up the vitamins

and minerals as discussed in the files and continue them through the

whole process. Dana (www.danasview.net) has excellent information on

what has worked for her children (controlling yeast, language, etc.

etc.) and has compiled numerous helpful sources on her website. (that

I constantly refer to). Moria Merriweather has also compiled Andy's

posts on a website (sorry, don't have the link, but just google " Andy

Cutler Chelation protocol " and it should come up). These are my main

sources for information.

I've been researching for probably the last year and we are finally

starting chelation (our fourth round is next weekend) using Andy's

protocol. Last week the yeast beast reared it's ugly head, but we

are going to be more preventative this next time. Dana suggested I

give biotin with magnesium, (then GSE as last resort because it kills

everything) Andy's posts suggest mega-doses of probiotics, I bought

Candex, which I plan to use in a preventative manner, and he will be

stay on a diet that starves the candida.

I hope any of that helped you.

>

> I'm a parent of a 5 year old ASD boy and have been researching

biomed for 2.5 years. Yes I

> made the mistake of doing IV-DMPS with a DAN and have tried much of

the 2006 DAN

> protocol. I state the year because there have been additions that I

haven't tried. My son is

> a non-responder actually could be getting worse. Not until I tried

homeopathy this

> Christmas did I realize that it could have been the IV-DMPS that

could have made him

> worse. So here I am trying to learn about the AC protocol. From

reading on here for the

> past week it seems like this is an intense group. I am not trying

to start any arguements I

> would just like to hear from parents who have done this protocol

and actually found that it

> was a piece of the puzzle for their kids. I would also like to know

if there is anyone on

> here that tried this protocol and found that it made things worse.

I understand that

> because it is low and slow it shouldn't but my kid is about as

sensitive as it gets. I am

> under the guidance of a great doctor in Seattle and was about to

start with 6.25 mg of

> DMSA every 4 hours for 7 days straight and then 7 days off and

start again but after the

> 2nd day I couldn't and my son couldn't tolerate it. His stims were

absolutely

> uncontrollable. We have Epicor and Del Immune V and Biotin in his

supplement list but I

> am unsure if it is yeast or if he cannot tolerate the DMSA. My doc

has prescribed Tenex to

> keep him comfortable while we chelate. I tried 1 mg but it didn't

stop his hyper stimming

> just made him take a nap (very unusual). I know there has been much

discussion on how

> to give advice and I will tell you I am going through my own issues

because of feeling like

> a failure to my kid BUT I would like to hear from others whether

they had a really tough

> nut kid (non-verbal- high verbal stimming - not retaining ABA

therapy- intense hand

> stimming - eating his shirt -biting- giggling/drunkeness) and

whether they saw some

> gains with this protocol. I am not a parent who wants to ease the

work for a group home. I

> want recovery. Please let me know if it was intense at the

beginning of the DMSA rounds

> and then got better.

> Kathy in BC

>

June 3, 2008

Comments below.

Posted by: " kathd9 " kathyd3@... kathd9

Date: Tue Jun 3, 2008 9:54 am ((PDT))

>I'm a parent of a 5 year old ASD boy and have been researching biomed for 2.5

years. Yes I made the mistake of doing IV-DMPS with a DAN and have tried much

of the 2006 DAN protocol. I state the year because there have been additions

that I haven't tried. My son is a non-responder actually could be getting

worse. Not until I tried homeopathy this Christmas did I realize that it could

have been the IV-DMPS that could have made him worse.

Kathy. I think you've come to the right conclusion, but I'm curious. How did

homeopathy help you discern this?

>So here I am trying to learn about the AC protocol.

That's a fine name, but I'll suggest that to remove the " charge " around the

issue, perhaps it might be better termed " physiologically appropriate protocol "

since it involves the physiologically appropriate use of chelators, whereas

other protocols neglect this basic issue.

>From reading on here for the past week it seems like this is an intense

group. I am not trying to start any arguements I would just like to hear from

parents who have done this protocol and actually found that it was a piece of

the puzzle for their kids.

You will find many here, along with adults on the AS who have found metals to

be the key issue and the approach here to be the most conservative/safest

approach around.

>I would also like to know if there is anyone on here that tried this protocol

and found that it made things worse.

Very good question to start out asking. I have looked myself and found one

such person. Ultimately it <<appeared>> that they hadn't actually followed the

protocol, which involves correctly dosing on the " half life " of the drugs

involved.

>I understand that because it is low and slow it shouldn't but my kid is about

as sensitive as it gets. I am under the guidance of a great doctor in Seattle

and was about to start with 6.25 mg of DMSA every 4 hours for 7 days straight

and then 7 days off and start again but after the 2nd day I couldn't and my son

couldn't tolerate it. His stims were absolutely uncontrollable.

It's wonderful that you have a doctor that is willing to dose appropriately (4

hours is the half life of DMSA). There are now two directions you can go.

First, while the place to start is 1/8mg per lb of bodyweight, there are adults

who are only able to tolerate 6mg of DMSA, about 1/32 mg per lb. You man need

to decrease the dose. Some children are on only 1 or 2mg per dose. The second

thing to do is to _shorten_ the time between doses. The more often the dose

the less side effects, since side effects come primarily through fluctuations

in bloodstream level of chelator and only secondarily from dose level. You

might try DMSA at 3.5 hours or even at 3 hours. You could probably do 3 hours

in the day and 4 hours at night.

>We have Epicor and Del Immune V and Biotin in his supplement list but I am

unsure if it is yeast or if he cannot tolerate the DMSA. My doc has prescribed

Tenex to keep him comfortable while we chelate. I tried 1 mg but it didn't stop

his hyper stimming just made him take a nap (very unusual). I know there has

been much discussion on how to give advice and I will tell you I am going

through my own issues because of feeling like a failure to my kid BUT I would

like to hear from others whether they had a really tough nut kid (non-verbal-

high verbal stimming - not retaining ABA therapy- intense hand stimming -

eating his shirt -biting- giggling/drunkeness)

There are specific interventions for mouthing - some of the other parents here

can speak about that. The giggling/drunkeness may well be yeast. The stimming

also, though I think there are other possibilities.

>and whether they saw some gains with this protocol. I am not a parent who

wants to ease the work for a group home. I want recovery. Please let me know if

it was intense at the beginning of the DMSA rounds and then got better.

Chelation will provoke worsening of or even new mercury poisoning symptoms.

(Since the chelators move mercury into the bloodstream, new symptoms will

appear.) The key is to keep the dosage level and timing down so that the

symptoms are manageable, and to make certain that the symptoms do not go on

more than 24 hours after the end of a round. If they go on too long, then you

have to further decrease dosage and/or timing. (The one tricky point here, is

that yeast reactions can go on longer. These are not mercury poisoning

symptoms from chelation liberating metals. They are yeast reactions from the

yeast build up during rounds.)

If yeast is a problem, make <<sure>> you do a " sulfur exclusion diet " (search

on onibasu.com for this) to work out what his sulfur status is. If your child

is high sulfur (has kidneys that tend to retain sulfur), then you want to

restrict sulfury foods in the diet. This will help decrease the mobilization

of mercury by the accumulation of sulfur from the diet in the bloodstream.

This is the most important thing you can do to decrease symptoms, both on and

off round.

>Kathy in BC

Dave

Ps. I just want to make sure that you have the standard supps in place:

B50 or B100 once or twice /d

Buffered C, 4g/d

Mg, 100mg 4x/d and increase to 200 in a few weeks

Mg Supps is done by taking 100-200mg (adult) with each meal and possibly at

bedtime. The amount used is adjusted to the max level that is not laxative.

Ca should also be given so the ratio of Ca to Mg intake from all sources

(food & pills) is somewhere between 1:2 and 2:1.

Vit E, 1600IU/d (adult)

CoQ10, 75-200mg/d (adult)

Zinc, 20mg + 1mg/lb-bodyweight

Flax Oil, 10+g/d (1-2 tbsp)

Borage oil, 1+g/d (1-2 tsp)

Milk thistle, 1-2 cap/meal

Folic acid, 400-800mcb/d

Make sure any selenium is in some form like selenomethionine or selenium yeast.

AIp. 162: 50-300mcg a day total.

Try Lecithin, Choline & B12 to see how you respond.

PPS. Do you have a hair test that you could post. There might be more input

we could offer if you either put it in the files section or have Dean post it:

http://www.livingnetwork.co.za/healingnetwork/hairtest.html

June 3, 2008

Kathy, I want to correct my comment here. You should do a sulfur exclusion

diet to discern his sulfur status, yeast or not - it's the most important thing

you can do for symptoms. If yeast is a problem, and you find him to be someone

who retains sulfur, then excluding sulfur from his diet might solve the problem

right there.

" If yeast is a problem, make <<sure>> you do a " sulfur exclusion diet " (search

on onibasu.com for this) to work out what his sulfur status is. If your child

is high sulfur (has kidneys that tend to retain sulfur), then you want to

restrict sulfury foods in the diet. This will help decrease the mobilization

of mercury by the accumulation of sulfur from the diet in the bloodstream. This

is the most important thing you can do to decrease symptoms, both on and off

round. "

June 3, 2008

also if you cant do one brand or type try another--I cant do doxy capsules but

WAS able to handle Doryx suspension!!! a liquid form of doxy!!

Minocycline has its own list of " be carefuls " I know well as Ive been on/off it

for almost ever relapse over the past 18 yrs!!!---personally I have to have it

suspended into almond oil ( not water soluble).

good luck

Finette

June 4, 2008

Hi Kathy,

I'm chelating myself. I have no children. Have you tried digestive enzymes and

probiotics?

S S

Re: New to the Group

Posted by: " kathd9 " kathyd3@... kathd9

Tue Jun 3, 2008 10:59 am (PDT)

Yes its that I am working with but right now I don't even know the right

questions to

ask her. My son's diet is excellent BUT I am pretty sure he is not retaining the

goodness

from his diet. gave us HCL in a tablet form for him to digest better. Her

diagnosis on

the first day of meeting him was abnormal metabolism but I guess that is normal

when a

kid has metals/bacteria/viruses.

He is organic Casein free/gluten/corn/soy and am now trying Feingold diet. Diet

doesn't

seem to affect him. He is beyond diet. He has been strictly adhering to it for

2.5 years. I

am lucky in that way. An example of lunch consists of acorn squash chicken

asparagus

avocado and some brown rice. And no dental fillings and neither do I. I would

love to hear

from others who have been through this. Did you just push through the increased

stimming?

Kathy

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

June 4, 2008

>>start with 6.25 mg of

> DMSA every 4 hours for 7 days straight and then 7 days off and start

again but after the

> 2nd day I couldn't and my son couldn't tolerate it. His stims were

absolutely

> uncontrollable.

What were the stims?

>>I would like to hear from others whether they had a really tough

> nut kid (non-verbal- high verbal stimming - not retaining ABA

therapy- intense hand

> stimming - eating his shirt -biting- giggling/drunkeness)

My son was a non-responder to most things, because 1) most things

required precursers, so he responded once the precursers were in

place, and 2) he had a LOT of medical issues, so I did not notice many

changes until a substantial portion of them had been addressed.

What my son needed for language is written here

http://www.danasview.net/issues.htm

There were two types of verbal stimming, and several types of hand

stimming, so you will need to describe exactly what your child does.

Eating shirt can be caused by zinc deficiency, food/supplement

intolerance, or yeast overgrowth.

Glggling and " drunkenness " was many times yeast overgrowth, and other

times viruses.

Dana

June 4, 2008

>>My son's diet is excellent BUT I am pretty sure he is not retaining

the goodness

> from his diet.

Carnitine was required here for proper absorption of many nutrients.

>> gave us HCL in a tablet form for him to digest better.

I have used apple cider vinegar for this purpose, for foods that

enzymes did not address.

>>Diet doesn't

> seem to affect him. He is beyond diet.

This is a relatively accurate description of my son. Carotenes and

fats were severely affective, other foods not so much. My son was a

high virus kid.

[As an aside, you sent me a private email a few days ago, but when I

replied, it was returned as undeliverable. Can you send me an email

from another email address? I will also try sending it thru this list.]

Dana

June 4, 2008

Thanks for the advice and support from everyone. The E2 theory seems

to make a lot of sense to me considering I wasn't waking up with a

morning erection for 4 days or so after my 200mg/2wk shot(Wed night)

until Monday which was weak and Tues and Wed was strong. Heh, it

almost seems funny sitting here talking about my morning erections

with a bunch of guys on an HRT forum. Sorry, I had to find a bit of

humor in all of this. ;-) Anyway, libido is feeling more level now

that it's been a few days and my large injection dose correlating with

high E2 conversion and subsequent drop in libido and potency is making

a lot of sense to me now. Anyway, I'm going to discuss aromatase

inhibitors with my endo next time I see him and switch to weekly

injection from here on out and see how it goes. I exercise regularly

and am in good shape so I don't think it's an overall health issue.

Do you guys have any endo's in the NYC or Westchester area that you

could recommend?

Thanks, Brown