New to this group

[Guest guest]

Hi Donna

I emailed you the name of a doc but wanted alos to comment on the

mtx. i was on this at it was 10 when i began. I switched from

injections to a pill as it was easier to drop. I droped liked Mark 1

pill but every 3 to 4 months! I was kept on the last 2.5 for 6months

then went off.

(went off totally in summer as that is my best season.

Love

Marge

> " I am also on a low dose of methotrexate which I think I need to

> just stop "

>

> Taper! SLOWLY! I dropped from 15mg to 7.5mg in one month and then

after

> one more month dropped to 0. Still way too fast - I had a flare

from HELL.

> Went back on the drug, but it took me almost 4 months to recover,

after

> returning to the drug. This might not happen to you, but I

wouldn't chance

> it personally.

>

> Mark

> metho 15mg/week

> Zyflammend

> anti-oxidants

> Vitamins

[Guest guest]

Hi all,

I am using TTFD cream (along with methyl-B12 shots, glutathione cream and

several other supplements) for chelation.

When I went to the DAN conference in Philadelphia, they were saying that the

TTFD cream may be as good, or better than DMSA and/or ALA?

As always, I am second guessing myself and thinking that maybe I am not doing

enough. However, I am seeing small increases in metals coming out (in the hair)

and a slow but steady progress in language and behavior with only minor yeast

issues.

Has anyone had any experience - good or bad - using TTFD.

Thank you,

Re: [ ] about to start chelation

Hi,

I would focus on th mercury. You can address this either with DMSA or ALA or

both. Eventually you will need ALA to get the mercury out of the brain. I would

start with one of them probably ALA do a few rounds and later try the other one

(some children seem to cope better with one, other with the other). If your

child does well on ALA you might want to use DMSA later for the lead, but it is

only yellow and the lead in my daughter's hair went down with only using ALA

(which is not supposed to chelate lead). It might be that getting rid of mercury

stops the body hanging on to more lead than it would otherwise do.

I would chelate using Andy's protocol and starting with the lowest recommended

amount of chelator and going up only very slowly.

At the same time I would look into where the metals come from (e.g. test your

house for lead http://www.leadcheck.com/ ).

I hope this helps,

Dagmar.

[Guest guest]

> I am using TTFD cream (along with methyl-B12 shots, glutathione cream and

several other supplements) for chelation.

These are not chelators, they do not remove any heavy metals, some of

them are quite dangerous.

> When I went to the DAN conference in Philadelphia, they were saying that the

TTFD cream may be as good, or better than DMSA and/or ALA?

This is not correct. It is difficult to characterize this as anything

but a delusion since even their own data is conclusive TTFD doesn't do

anything about the metals.

> As always, I am second guessing myself and thinking that maybe I am not doing

enough. However, I am seeing small increases in metals coming out (in the hair)

and a slow but steady progress in language and behavior with only minor yeast

issues.

>

> Has anyone had any experience - good or bad - using TTFD.

More bad experiences than you can count. TTFD has a 20% adverse

reaction rate.

B-12 injections also can cause pretty serious long lasting problems.

> Thank you,

>

>

[Guest guest]

Can you please tell me why the TTFD and B12 shots are dangerous.

Thank you

[ ] Re: new to this group

> I am using TTFD cream (along with methyl-B12 shots, glutathione cream and

several other supplements) for chelation.

These are not chelators, they do not remove any heavy metals, some of

them are quite dangerous.

> When I went to the DAN conference in Philadelphia, they were saying that the

TTFD cream may be as good, or better than DMSA and/or ALA?

This is not correct. It is difficult to characterize this as anything

but a delusion since even their own data is conclusive TTFD doesn't do

anything about the metals.

> As always, I am second guessing myself and thinking that maybe I am not

doing enough. However, I am seeing small increases in metals coming out (in the

hair) and a slow but steady progress in language and behavior with only minor

yeast issues.

>

> Has anyone had any experience - good or bad - using TTFD.

More bad experiences than you can count. TTFD has a 20% adverse

reaction rate.

B-12 injections also can cause pretty serious long lasting problems.

> Thank you,

>

>

[Guest guest]

Hello everyone, My name is and I may be suffering from

undiagnosed rheumatoid arthritis. I am 28 years old and a mother of

two with autism and ADHD. I have be suffering for many years now with

painful joints in every part of my body. I am hoping to get diagnosed

with the culprit very soon. So, what is your story on how bad

rheumatoid arthritis is for you. Like I've said, I'm not sure but I

feel that there is a possibility.

Thanks,

[Guest guest]

Hi and welcome.  I was first symptomatic when I was your age.  I'm 37 now

and doing well on a biologic.  I have 2 small kids as well.  The best thing we

can tell you is to find a rheumatologist you feel comfortable with asap.  I

advise people to make 2-3 appointments so that if you don't like the first one,

you don't have to wait another 4-8 weeks to be seen by another.  There are lots

of important blood tests that they will run like RF, CRP, ESR, ANA and antiCCP. 

That will steer them toward a diagnosis, but your clinical presentation and

family history are very important too.  My symptoms started in my hands and

feet.  My finger joints were red, painful, and swollen.  Then my shoulder felt

like someone hit it with a baseball bat.  Before I knew it, random joints

throughout my body were very painful.  My pat gma had RA and my whole family is

chock o'block with autoimmune diseases, so it was pretty certain I was going to

get something

fun-filled like RA.  I took a lot of prednisone and NSAIDs over the years, but

I found the best match with Enbrel.  While you're waiting to be worked up, take

good care of yourself.  Try to get some water exercise in if you can, that makes

all the difference for ouchy joints.  Try not to be scared.  This is often

a manageable disease and we now have the weapons we need to fight back, Kate F

________________________________

From: amandaautismx2 <amandaautismx2@...>

Sent: Wednesday, February 4, 2009 9:12:28 AM

Subject: [ ] New to this group

Hello everyone, My name is and I may be suffering from

undiagnosed rheumatoid arthritis. I am 28 years old and a mother of

two with autism and ADHD. I have be suffering for many years now with

painful joints in every part of my body. I am hoping to get diagnosed

with the culprit very soon. So, what is your story on how bad

rheumatoid arthritis is for you. Like I've said, I'm not sure but I

feel that there is a possibility.

Thanks,

[Guest guest]

Hi...

Nice to hear from you and welcome, you should get that diagnoses as soon as

possible and get on a treatment because the sooner the better. Rheumatoid

Arthritis can be very difficult without treament and it doesn't get any better

over time, with raising a family you're going to need your body on your side as

much as possible. There is currently a lot of stuff going on with treatment and

management of the decease so your outlook is very hopeful as long as you stay on

the case and take care of yourself as well as you take care of your children. I

know Moms, they tend to take care of everyone but themselves and point is that

you cannot risk doing that if you do have RA, you have to take care of yourself

too, it's important.

Stan,

Seattle, Sun!

-------------- Original message --------------

From: " amandaautismx2 " <amandaautismx2@...>

Hello everyone, My name is and I may be suffering from

undiagnosed rheumatoid arthritis. I am 28 years old and a mother of

two with autism and ADHD. I have be suffering for many years now with

painful joints in every part of my body. I am hoping to get diagnosed

with the culprit very soon. So, what is your story on how bad

rheumatoid arthritis is for you. Like I've said, I'm not sure but I

feel that there is a possibility.

Thanks,

[Guest guest]

Hi :

Welcome to this wonderful group of caring and supportive people. I have

had RA for 5 1/2 years. I do the best I can each day, and rest when I

can. I just turned 69 the other day.

I was sorry to read that you are so young to have this awful disease. I

wish you pain free days, and I hope when you do get diagnosed with RA,

that they will start you on all the necessary meds. right away.

God Bless you and your children.

Hugs,

Barbara

--- In , " amandaautismx2 " <amandaautismx2@...>

wrote:

>

> Hello everyone, My name is and I may be suffering from

> undiagnosed rheumatoid arthritis. I am 28 years old and a mother of

> two with autism and ADHD. I have be suffering for many years now with

> painful joints in every part of my body. I am hoping to get diagnosed

> with the culprit very soon. So, what is your story on how bad

> rheumatoid arthritis is for you. Like I've said, I'm not sure but I

> feel that there is a possibility.

> Thanks,

>

>

[Guest guest]

Hi

Welcome to the group.You have come to the right place for information,

friendship, venting, and sharing. Its a great place to be. Again Welcome

Heidibug

On Wed, Feb 4, 2009 at 10:12 AM, amandaautismx2 <amandaautismx2@...>wrote:

> Hello everyone, My name is and I may be suffering from

> undiagnosed rheumatoid arthritis. I am 28 years old and a mother of

> two with autism and ADHD. I have be suffering for many years now with

> painful joints in every part of my body. I am hoping to get diagnosed

> with the culprit very soon. So, what is your story on how bad

> rheumatoid arthritis is for you. Like I've said, I'm not sure but I

> feel that there is a possibility.

> Thanks,

>

>

>

>

[Guest guest]

Hello Maz,

what is the combination of abx that made you asymptomatic? I have been trying

without much success doxy, mino, metronidazole and ampicilline.

thank you,

rheumatic

From: marilyn.m@...

Date: Wed, 19 May 2010 00:12:16 +0000

Subject: rheumatic New to this Group

Hello everyone,

I am new to this group (although I think I recognise a couple of people here) I

am looking for another group to be a part of. There aren't too many places you

can say you are using AP therapy without being targetted by those who don't

agree or understand what you are doing.

I have been using AP since Jun 08 & with a lot of tweaking/changing combinations

of meds along the way (last time in Sep 09) eventually found a combo that works

for me & I am now asymptomatic.

MazM

_________________________________________________________________

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail.

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[Guest guest]

I understand your frustration in all this but hope you are under the care of an

AP Dr ???

My Dr tweaks the medication to suit the patient as well as the disease, it's not

a 'one fits all' kind of regime & has absolutely no hesitation in treating the

co-infections at the same time;

In my case my treatment regime is ::

Sept 9, 09 MWF

Breakfast Amoxil (amoxicillin) x 2-1/2 ml

Rulide (roxithromycin) 150mg x ½ tablet

Lunch Dalacin C (clindamycin) 150mg x 1 tablet

Dinner Ibilex (cephalosporin) 250mg x 1 tablet

Bedtime Nexium (Esomeprazole) 40mg x ½ tablet

However I have to say it took 6 or 7 tweaks/changes of meds before this combo

worked for me.

[Guest guest]

Hi ,

It took me about 2mths before I began to realise that the flares were definitely

getting further apart & the pain although still really painful wasn't at the

'please kill me' stage it had been .. but having said that my family had

actually noticed before I did. However, remember that over the past 2 yrs my

meds have been tweaked in dosage & we have changed a couple as well over that

time. I have always used the amoxil & roxithromycin but the other 2 have

changed, ie take one out put another in etc .. the last change was Sept last

year, by late Oct I was pain free & by Xmas the strength was starting to come

back in my hand; ie we were on holiday & my husband was filling the tanks under

the caravan, I noticed they were full so I just walked over & turned the hose

nozzle off came back & sat down ,, my daughter who had been watching me &

pointed out that I hadn't been able to turn a hose nozzle on or off for over 2

yrs. I hadn't even realised what I had done.

Maz,

ps : the nexium is just to protect the stomach.

>

>

> Hello Maz,

>

> how long did it take you to start feeling better while on the four antibiotics

and the nexium?

>

> thanks,

>

>

>

>

>

>

>

>

>

> rheumatic

> From: marilyn.m@...

> Date: Wed, 19 May 2010 02:04:03 +0000

> Subject: rheumatic Re: New to this Group

>

>

>

>

>

> I understand your frustration in all this but hope you are under the care of

an AP Dr ???

>

> My Dr tweaks the medication to suit the patient as well as the disease, it's

not a 'one fits all' kind of regime & has absolutely no hesitation in treating

the co-infections at the same time;

>

> In my case my treatment regime is ::

> Sept 9, 09 MWF

> Breakfast Amoxil (amoxicillin) x 2-1/2 ml

> Rulide (roxithromycin) 150mg x ½ tablet

> Lunch Dalacin C (clindamycin) 150mg x 1 tablet

> Dinner Ibilex (cephalosporin) 250mg x 1 tablet

> Bedtime Nexium (Esomeprazole) 40mg x ½ tablet

>

> However I have to say it took 6 or 7 tweaks/changes of meds before this combo

worked for me.

>

>

>

>

>

> _________________________________________________________________

> The New Busy is not the old busy. Search, chat and e-mail from your inbox.

>

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>