Newbie with Questions

November 4, 2003

, I also was lucky to have a successful treatment. I took off a few weeks when I started treatment, but then worked throughout. I tested undetectable at 6 mos into treatment, at the end of treatment, 6 mos after and then again 12 mos after the end of treatment. Now I just go back to regular physicals and watch my enzyme levels. I don't expect to be bothered by that nasty old dragon again! -dz- Davies <lisamarie64@...> wrote:

Leann,

Thanks so much for the encouragement....... It is always so nice to here a succes story such as yours... I am ready for treatment, as ready as I can be, and God willing everything will go okay....

And Congrats to you on your tx, that is wonderful....!!! I hope you are putting a little wieght back on as that is an awful lot to loose...

Keep up the good work Girl

Hugs & Prayers

June 7, 2004

I don't know about Similase Jr, but if I upped my son's enzyme dose

dramatically he would also have an immediate meltdown.

I think that's a long time to use GSE. You might want to rotate

yeast killers. See www.danasview.net for yeast info and treatment

ideas.

> Hi - I've been lurking for several weeks and have found all

> information posted very helpful. We've been giving my 4 1/2 yr old

> son the enzyme Similase Jr for several weeks. One cap with

breakfast

> and one with supper. Last Tuesday we bumped it up to 2 caps with

> breakfast and 2 with supper. He had an instant " meltdown " which

> lasted until this a.m. (Saturday). We've been giving 3 drops/day

of

> GSE since January, probiotics and vit c. Now I'm wondering about

> yeast. Am I right to think that much GSE may have caused a yeast

> problem? Will I only know if he has a yeast problem if we have him

> tested?

>

> Thanks for everything,

>

June 7, 2004

Hi and welcome,

>>>We've been giving my 4 1/2 yr old son the enzyme Similase Jr for

several weeks.

Is there any reason he hasn't had enzymes with lunch? School?

Why did you start with the GSE to begin with? Most people give it to

treat yeast, so it isn't as likely it caused a yeast problem. Did you

increase the GSE when you increased the enzymes?

What I am wondering is that giving one capsule of Similase twice a

day may have been helping a little bit, but it wasn't enough to be an

effective 'therapeutic' dose. Often several capsules of another brand

are needed to for the same level of effectiveness of a Houston or

other 'good' brand which is more targeted to specific issues. So when

you upped to the 4 capsules a day, you were hitting some more

significant die-off or cleaning out which can last several days.

I wouldn't assume yeast just yet. Keep at this dose for a few days

and then try adding the Similase at lunch times too...and one capsule

at any snacks. This will help with digestion and gut healing each

time he eats. IF he has yeast, it will help with yeast too so you

aren't wasting any time on that front either.

Please post as you go along. Whether it is a yeast problem might

become more clear in the next few weeks depending on his response.

There are several other inexpensive methods to try after the enzymes.

- you might try increasing the GSE for yeast.

- epsom salts with help with die-off/yeast

www.enzymestuff.com/epsomsalts.htm

Testing for yeast will not definitely tell if you have a yeast

problem or not.

One last question, if he on any type of special diet or had any ear

infections?

Sorry to pepper you with so many questions, but this answers can give

clues to what might be going on. Just the fact he reacted to the

increase in Similase enzymes is a good indication you are on the

right track right not.

June 7, 2004

Hi. Thanks for all the help. I'm starting to get a headache from

deciding what to do.

> Is there any reason he hasn't had enzymes with lunch? School?

We only started the enzymes to help him poop. He only poops about 1

or 2 times/week. His day care is very bad about giving meds, so I

just left out lunch.

> Why did you start with the GSE to begin with? Most people give it

to treat yeast, so it isn't as likely it caused a yeast problem. Did

you increase the GSE when you increased the enzymes?

We started the GSE to help fight colds and flu bugs which he seemed

to have a lot of this winter. He gets a couple drops in his juice in

the morning. It's also in the handsoap we use. We actually

decreased the GSE when we increased the enzymes.

Should we add the GSE back in at the old dosage? Then we could wait

until next week and add 1 cap (or less) of the Similase at lunch.

I'm reading " Enzymes for Austism and Other Neuro Conds " and could try

the chocolate ball recipe. I think even Riley would remember to take

that before lunch!

We've been doing Epsom salt baths about twice/week. Just a little

each time.

> One last question, if he on any type of special diet or had any ear

infections?

He's been off the GFCF for about 1 1/2 years although we very much

limit his sugar and dairy and absolutely no fast food. After we

increased the enzymes, he complained of an earache which we treated

with olive oil and garlic. Otherwise, he never gets earaches.

Thank you again for all the help.

June 8, 2004

>>We've been giving 3 drops/day of

> GSE since January, probiotics and vit c. Now I'm wondering about

> yeast. Am I right to think that much GSE may have caused a yeast

> problem?

Actually, if the yeast is now gone, it may have caused a bacteria problem.

More yeast info here

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

What do his bms look like?

Try dropping the GSE, see if that helps.

Dana

June 8, 2004

Hi Dana- Thanks for the info. We will drop the GSE for a while to

see if that helps. His bms are kind of carmel colored, big pasty

poop ball (still uses a diaper, major pooping issues) and somewhat

stinky. He only poops once or twice a week.

June 8, 2004

Dana-I forgot to mention in my last post that Riley has had a rashy

butt for a while. Looks like little pimples. Just a sweaty kid, or

something being released...?

Thanks,

June 9, 2004

> Dana-I forgot to mention in my last post that Riley has had a rashy

> butt for a while. Looks like little pimples. Just a sweaty kid, or

> something being released...?

Might be yeast. Might be virus. Might be a food he is eating.

Dana

February 12, 2005

Welcome ,

Sorry about your dx, but glad you found the group. There are great

people, and wonderful information. I'm glad that you have a good

rheumy, that is so important. There are so many different meds to

choose from. I'm on Humira, methotrexate,lodine,folic, and take

loratab for the pain.

Are you going to taper off the Prednisone? Are you also taking the

folic acid? That is very important, it helps the side effects from

the methotrexate.

Glad your here,

Tawny

>

> Hi Everyone.

>

> I was recently diagnosed with RA. It came on suddenly, and before

I

> knew it, I couldn't barely walk or physically take care of myself

or

> my children. I have a great Rheumatologist, and am on my second

> combination of meds (first combo didn't work!). What I am trying

to

> figure out here is what everyone takes? I know there are MANY

> different meds out there, and not the same combo works for

everyone.

> I am just shocked at how many different ones I need to feel

> somewhat " normal " and to function day to day.

>

> I am on the following:

>

> Methotrexate - 20mg - once a week

> Prednisone - 20mg daily

> Hydroxychloroquine - 400mg daily

>

> In addition, I have had Cortisone shots, and take pain pills as

> needed.

>

> Is there anyone else out there on a similar combo? I am concerned

> about stomach/gastro-intestinal upset.

>

> This is a wonderful resource, and I am thankful to have found it!

>

February 12, 2005

Hi Tawny.

Yes, I am also on the folic acid as well. As for the Prednisone, I was

on a tapered dose, and I became increasingly ill each time my dose

was lowered, so I am on a steady amount right now. I am limited as to

what I can have for pain because I've had a Gastric Bypass, so I am

stuck with the Tylenol 3's with Codeine. They don't take away the pain,

but just take the edge off.

Thank you for the welcome, I'm glad to have found the group.

-- In , " tdianaok " <tdianaok@y...>

wrote:

>

> Welcome ,

> Sorry about your dx, but glad you found the group. There are great

> people, and wonderful information. I'm glad that you have a good

> rheumy, that is so important. There are so many different meds to

> choose from. I'm on Humira, methotrexate,lodine,folic, and take

> loratab for the pain.

> Are you going to taper off the Prednisone? Are you also taking the

> folic acid? That is very important, it helps the side effects from

> the methotrexate.

> Glad your here,

> Tawny

>

February 12, 2005

hi karen..... my name is rae and i was diagnosed with RA about 1 year ago... i

was put on 40 mgs of prednisone with methotrexate and i could not tolerate the

MTX so i am on enbrel and plaquinel and trying very hard to get off the

prednisone... i am dowm to 2 1/2 mgs every other day.... and i am doing it... i

feel ok and i have LOST 9 pounds... i do not fel starved all the time.... and

ihave chosen to eat HEALTHY only.. so i am really proud, i gained 30 pounds on

the prednisone... so i have many more pounds to lose...

rae

[ ] Newbie With Questions

Hi Everyone.

I was recently diagnosed with RA. It came on suddenly, and before I

knew it, I couldn't barely walk or physically take care of myself or

my children. I have a great Rheumatologist, and am on my second

combination of meds (first combo didn't work!). What I am trying to

figure out here is what everyone takes? I know there are MANY

different meds out there, and not the same combo works for everyone.

I am just shocked at how many different ones I need to feel

somewhat " normal " and to function day to day.

I am on the following:

Methotrexate - 20mg - once a week

Prednisone - 20mg daily

Hydroxychloroquine - 400mg daily

In addition, I have had Cortisone shots, and take pain pills as

needed.

Is there anyone else out there on a similar combo? I am concerned

about stomach/gastro-intestinal upset.

This is a wonderful resource, and I am thankful to have found it!

February 12, 2005

Hi ,

Yes, you have to be careful coming off the Prednisone. The Loratab

just takes the edge off my pain also. I just don't think I'm ready

yet to try anything stronger.

You take care of yourself, Tawny

> >

> > Welcome ,

> > Sorry about your dx, but glad you found the group. There are

great

> > people, and wonderful information. I'm glad that you have a good

> > rheumy, that is so important. There are so many different meds

to

> > choose from. I'm on Humira, methotrexate,lodine,folic, and take

> > loratab for the pain.

> > Are you going to taper off the Prednisone? Are you also taking

the

> > folic acid? That is very important, it helps the side effects

from

> > the methotrexate.

> > Glad your here,

> > Tawny

> >

August 6, 2005

Read the last 100 or so posts.

They will answer most of your questions.

Then search this board for more specific info.

Then if you have more questions, ask.

Someone will be able to help.

Welcome to the group.

Been there done that.

> Hi everyone: Tell me if I am in the right church,wrong pew. Went to

> the Dr. complaining of almost complete loss of sex drive, flashes,

> some loss of body hair and he-hooters bigger than I think I should

> have. He did blood work, other than cholesterol up (shoot me I'm

> Italian) he says my testosterone level is not too low, not the

highest

> it could be, but he doesn't think that I should worry about taking

> testosterone yet. Says it is my age. While I am 51, I am not quite

> ready to look like my nana when I get naked! Just moved to this

area

> and only been with this Dr. a short while. Before I shop for a new

Dr.

> would appreciate some advice on testosterone, estrogen so I can

hold

> an intelligent conversation with this or a new Dr about what's

going

> on. PS, negative for any STD's, cancer, and PSA is within normal

> range. No infections that they can find. What are " normal " levels

for

> the hormone tests he is doing. Thanks, Mike

August 6, 2005

Hello Mike:

You are in the right church and you even made it to the right pew

BOTH!

REGARDING TESTOSTERONE LEVELS:

Here is the chart we always refer to:

http://www.natural-hrt.com/andropause04.html

But, optimally, if you had a bloodwork test from your last physical

(back when you were feeling good) showing your " Total

Testosterone, " " Free Testosterone " and " Percentage of Free

Testosterone " as well as your " E2 levels " and your " Prolactin levels " -

- this would be the better way to get a good idea as to what " NORMAL "

is for you. Reason being, everyone is different and, normal for you

is not the same as normal for me.

REMEMBER: When doctors look at your lab results and the numbers for

your testosterone levels show you to be in a " normal " range -- IGNORE,

IGNORE, IGNORE!!! The normal range used by labs all over the world is

SO averaged out and dumbed down to the lowest common denominator, they

are useless. Men are being told day in and day out that the amount of

testosterone in their bodies is in the " normal " range and these poor

fools are believing it. They feel horrible, have enlarged breasts, no

sex-drive, and have trouble with erections. OBVIOUSLY, their

testosterone level is NOT " normal " for them or they wouldn't be

feeling like crap and have no sex-drive, etc.

If you want to hold an intelligent conversation with your doctor about

Estrogen in men, buy two copies of Dr. Eugene Shippen's book

called " The Testosterone Syndrome. " Keep one copy of the book for

yourself and, give one copy of it to your doctor. Chapter 5 explains

the dangers of estrogen in men clearly and intelligently.

Hope this helps!

Best Regards,

Gene

> Hi everyone: Tell me if I am in the right church,wrong pew. Went to

> the Dr. complaining of almost complete loss of sex drive, flashes,

> some loss of body hair and he-hooters bigger than I think I should

> have. He did blood work, other than cholesterol up (shoot me I'm

> Italian) he says my testosterone level is not too low, not the

highest

> it could be, but he doesn't think that I should worry about taking

> testosterone yet. Says it is my age. While I am 51, I am not quite

> ready to look like my nana when I get naked! Just moved to this area

> and only been with this Dr. a short while. Before I shop for a new

Dr.

> would appreciate some advice on testosterone, estrogen so I can hold

> an intelligent conversation with this or a new Dr about what's going

> on. PS, negative for any STD's, cancer, and PSA is within normal

> range. No infections that they can find. What are " normal " levels for

> the hormone tests he is doing. Thanks, Mike

August 6, 2005

On Sat, 06 Aug 2005 04:06:03 -0000, you wrote:

>Hi everyone: Tell me if I am in the right church,wrong pew. Went to

>the Dr. complaining of almost complete loss of sex drive, flashes,

>some loss of body hair and he-hooters bigger than I think I should

>have. He did blood work, other than cholesterol up (shoot me I'm

>Italian) he says my testosterone level is not too low, not the highest

>it could be, but he doesn't think that I should worry about taking

>testosterone yet.

Without the numbers we can't tell you anything. what were the test

results?

>Says it is my age. While I am 51, I am not quite

>ready to look like my nana when I get naked! Just moved to this area

>and only been with this Dr. a short while. Before I shop for a new Dr.

>would appreciate some advice on testosterone, estrogen so I can hold

>an intelligent conversation with this or a new Dr about what's going

>on. PS, negative for any STD's, cancer, and PSA is within normal

>range. No infections that they can find. What are " normal " levels for

>the hormone tests he is doing. Thanks, Mike

- - - -

Just another albino black sheep

September 18, 2005

Hello Debra65,

I haven't had surgery yet. I plan to avoid it as long as possible.

I heard, and sveral pain drs confirmed it- surgery doesn't get rid

of all the pain. You will very likely still have pain, probably at

least as severe as you have now, after surgery. You can expect to

releive the radiating pain, and maybe all the numbness with surgery.

I go to PT twice a week, and do all my PT stuff every day. It often

helps. You may want to check out:

http//www.newyorker.com/printables/fact/020408fa_FACT

It talks about surgery and is very informative. You may also want

to get a referral to a pain clinic. If you can, go to the Mayo

clinic, or another nationally 'famed' clinic. I go to the pain at

at Jewish Hospital (where hristopher Reev, superman, went).

This clinic made my previous clinic experience seem like a drunken

rodeo. Yeah, there IS a lot of difference in clinics.

I hope some of this helps. Good luck with whatever you decide!

Gos bless you

> Hi to all,

> Can any of you out there tell me how long it took to heal? What

about

> PT? I am really scared that I won't be able to turn my head at all

> after the surgery!

>

> Thanks!

September 18, 2005

I also had a bone spur, needed a diskectomy, and had a fusion.

It took two weeks for the major pain to clear, and two months for me

to feel so much better, I was sorry I hadn't gone in for surgery

before.

I do not seem to have reduced mobility, but I only had one fusion.

Maybe with two you will get some limit to your mobility, but if

you've been in pain a long time, you will unlikely have less mobility

than you have now.

One thing...is your surgeon a bone or nerve doc? For spine, better to

go with nerve expert. (My opinion, YMMV.)

Best of luck on the surgery November 8th.

Shulamit

--- debrar65 <debrar65@...> wrote:

> Hi to all,

> I have some questions regarding Cervical fusions and your varous

> outcomes...

> I have been bouncing between Drs since February with tingling and

> numbness in my hands. After xrays and MRI they said I have

> congenital

> fusoins at C5-6 and C3-4. I also have severe impingment at 4-5

> which

> the Dr called a spinal cord injury and a large bone spur and some

> stenosis at C2-3. Finally found a DR I felt comfortable with and am

>

> scheduled for diskectomy and fusion at these 2 disks on November

> 8th.

> Can any of you out there tell me how long it took to heal? What

> about

> PT? I am really scared that I won't be able to turn my head at all

> after the surgery!

>

> Thanks!

>

September 18, 2005

Shulamit,

Thank you for responding to me. I am planning on being out of work for at least

8 weeks so hopefully I will be feeling better by then. . As I said in my

original post I have bounced around various docs... ortho, nuero, general

surgery, etc.. The surgeon I decided on is an ortho guy but he has asked a nuero

to assist. The way I see it that is the best of both worlds.

Thank you for you rgood wishes,

Debra

Shulamit <shulamitw@...> wrote:

I also had a bone spur, needed a diskectomy, and had a fusion.

It took two weeks for the major pain to clear, and two months for me

to feel so much better, I was sorry I hadn't gone in for surgery

before.

I do not seem to have reduced mobility, but I only had one fusion.

Maybe with two you will get some limit to your mobility, but if

you've been in pain a long time, you will unlikely have less mobility

than you have now.

One thing...is your surgeon a bone or nerve doc? For spine, better to

go with nerve expert. (My opinion, YMMV.)

Best of luck on the surgery November 8th.

Shulamit

--- debrar65 <debrar65@...> wrote:

> Hi to all,

> I have some questions regarding Cervical fusions and your varous

> outcomes...

> I have been bouncing between Drs since February with tingling and

> numbness in my hands. After xrays and MRI they said I have

> congenital

> fusoins at C5-6 and C3-4. I also have severe impingment at 4-5

> which

> the Dr called a spinal cord injury and a large bone spur and some

> stenosis at C2-3. Finally found a DR I felt comfortable with and am

>

> scheduled for diskectomy and fusion at these 2 disks on November

> 8th.

> Can any of you out there tell me how long it took to heal? What

> about

> PT? I am really scared that I won't be able to turn my head at all

> after the surgery!

>

> Thanks!

>

December 1, 2005

In a message dated 02/12/2005 07:02:52 GMT Standard Time,

prabito@... writes:

We've been seeing a DAN doctor and did the

challenge test for chelation with DMPS. It showed a high amount of

mercury, yet it wasn't in the red zone, so I am not sure whether to do

chelation. I would appreciate any feedback.

>>>rarely in the red zone - IMHO - CHELATE for sure

Lots of info here

_Mercury Detox: Information, Tools, and Resources_

(http://home.earthlink.net/~moriam/)

Mandi in UK

December 2, 2005

Did you do a DDI hair test and apply counting rules? That's more useful.

S S

<tt>

In a message dated 02/12/2005 07:02:52 GMT Standard Time,

prabito@... writes:

We've been seeing a DAN doctor and did the

challenge test for chelation with DMPS. It showed a high amount of

mercury, yet it wasn't in the red zone, so I am not sure whether to do

chelation. I would appreciate any feedback.

>>>rarely in the red zone - IMHO - CHELATE for sure

Lots of info here

_Mercury Detox: Information, Tools, and Resources_

(<a

href= " http://home.earthlink.net/~moriam/) " >http://home.earthlink.net/~moriam/)</\

a>

Mandi in UK

December 2, 2005

Hi Patty,

I am chelating my son who has a diagnosis of Apraxia and would have a

PDD diagnosis if I sought one. My son is 3.9. From what you have

said, my son sounds more severe than yours. At 2.5 my son couldn't

say " fan " because he couldn't figure out how to motor plan the " f "

sound followed by the " an " sound. I have only chelated him for 8

rounds of low dose DMSA and ALA, but between that and supplementing

him, my son is now speaking in sentences. There is an inorganic

element to his speech that we are overcoming, but that is no surprise.

He can pronounce anything he is asked to pronounce, so it seems to me

that we have seen the apraxia start to fall away. Interestingly, the

more the apraxia falls away, the more PDDish he seems. I'll take it!

I would definitely think you should consider chelating your son....

BUT, and this is a big BUT! You should do your research and be

careful. Most or many of us are on this board because we listened to

the doctors without doing our research first. Don't make that mistake

again just because the doctor you are dealing with is a DAN doctor. I

use one too, but that is no substitute for research. I see DAN docs

recommend dangerous stuff all the time. You need to know when to say

yes and when to say no, and to drive your son's therapies yourself. In

fact, many on this board chelate their kids without docs.

The reason I bring this up so fervently in this post is because I see

you did a DMSA challenge test on your son. Many people on this board

think not only that this is not helpful for diagnosic purposes, but is

downright dangerous in that you can cause metals in the system to be

unnecessarily redistributed, including to the BRAIN. Not something we

need to do. On this board it is generally recommended that you opt in

for 5 rounds of low dose DMSA (with or without ALA) on a 3 day on and

at least an equal amount of days off cycle. If you see progress, then

chelation is a good idea. If you don't it might not be.

Have you had a Doctor's Data hair test (for essential elements) done?

This is an incredibly helpful test. And I would also have a

comprehensive blood test done (CBC, Comp. Metabolic Panel, Free T3,

Free t4, ferritin). I am sure there is other stuff that I can't think

of, but hopefully someone else will chime in on this. The blood work

should be able to be done at your local lab.

And finally, where apraxia is at issue, I would use DMSA and not DMPS.

Some have found that many apraxic kids have high lead, and this is true

for my son. DMSA is a very effective lead chelator (moreso than DMPS,

I think).

I am sure this is too much information, but hopefully it helps.

Further recommendations: buy Andy Cutler's Hair Test Interpretations

book, read the files section, post any questions, and DON'T RELY ON

ANYONE OTHER THAN YOURSELF to make decisions for your son.

Sorry if this is rambling. I just feel strongly about this stuff.

Best,

Anne

>

> Has anyone who has a child with speech apraxia done chelation? If

so,

> did it help.....is your child speaking normally now? My 2 1/2 yr old

> was diagnosed with PDD and speech apraxia. He is at the very mild

end

> of the spectrum, but he can't put more than 2 words together, and

just

> says single words. We've been seeing a DAN doctor and did the

> challenge test for chelation with DMPS. It showed a high amount of

> mercury, yet it wasn't in the red zone, so I am not sure whether to

do

> chelation. I would appreciate any feedback.

>

> Thanks,

> Patty

>

December 2, 2005

Hi Anne,

My son can't say " fan " either. He cannot pronounce the F sound.

Why is the challenge test not helpful? Is it not accurate enough? We already

did the hair test, and a ton of other tests. The urine toxic elements test

showed no lead. What do you mean most of you are on here because you listened

to the doctor w/o doing research first. Isn't that what the DAN doctor is for?

I can read up on this and do research, but I'm not a doctor and don't feel

qualified on what method to use. Why do you all prefer DMSA to DMPS? Is it

because it's FDA approved and DMPS isn't? The more I think about this, the more

I am convinced that he has mercury in his brain... just listening to him trying

to talk. I think the chelation is definitely worth a try.

Patty

anneecbrynn <abrynn@...> wrote: