New member intro

[Guest guest]

Sorry that I didn't welcome you to our group in my last e-mail. The weather is

changing , and I am half asleep because of it.

You are quite lucky to have such an aware doctor from step one. Clone him for

everyone.

Mona

Re: rheumatic New member intro

Welcome and it would be nice if you can find out the solution of histamine

for the others here.

In a message dated 3/31/2009 1:19:42 P.M. Mountain Daylight Time,

eff@... writes:

Hi all,

I first want to say how glad I am to have stumbled on this group.

I was diagnosed with RA just last month after symptoms beginning last August

in one thumb and progressing to almost total debilitation by Christmas. I

visited a regular rheumatologist in Feb. who prescribed prednisone (I'm down

to

5 mg/day) and MTX, which I have not had filled - I was scared from the

literature and little research I've done.

I got the name of a Dr near Denver (from roadback.org) that I visited last

week and he has already started me on Minocin, fish oil, boswellia and strange

to me, a diluted histamine solution. He did an allergy test with the

histamine and then gave me the diluted solution for sublingual doses. He said

it

should help my joint pain within a few minutes but I really didn't understand

until later that day on the way home. I used it when I almost couldn't walk

from the stiffness and pain and within 10-20 minutes, the stiffness was

reduced

and the pain was almost gone. Of course, the aches were still there, but the

knife-like pain was gone.

Has anyone else had this experience with diluted histamine?

Regards,

JhaRee

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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[Guest guest]

Hi ,

Thanks for your introduction. I had a glance at your blog and came away smiling

at what was written there: " This blog reveals glimpses of our crazy, happy

life! " ; )

My name is Velvet and I am located in Canada. I am mom to 5, including one

angel, our only daughter. Our little girl was born with a rare disorder and we

lost her suddenly to cardiac arrest. We have 4 beautiful sons who are as

different from one another as night and day! Our second youngest son is

described developmentally as " Aspergers-like " .

Welcome!

Velvet

" 's Syndrome "

http://www.tetrasomy18p.ca/

>

> Hello all~

> My name is and I am the mom of six, 5 living.  My oldest is my only

girl.  My second oldest was born with congenital heart disease and passed away

after heart surgery as an infant. 

>  

> In the past 8 months my two youngest boys were diagnosed with HFA (now 3 yr

old) and AS (8 yr old).  In February my 3 yr old had open heart surgery (he also

has the heart defects his older brother had) and is doing well.

>  

> I'm a bit overwhelmed by everything, but things are settling down.  I am

trying to learn how to deal with the Asperger's and the school system. 

>  

> Whew!  How's that for an intro?

> I look forward to learning from you all.

> in TN

>  

>

> Schaffer

>

> Check out my blogs:

>

>

>

> www.Schaffer.blogspot.com

>

> www.carepages.com 'Elischaffer'

>

[Guest guest]

I guess you know now that it's best your grandson doesn't see his mother for now. It's just too difficult for him. You and your husband are his stability and safety. It is a big sacrifice you are making, but if you love your grandson, how could you do any differently? I hope you can find the right help for him. If you have trouble with schools, doctors or anything, this is a good place to ask for help. The people on this list have good advice and of course understand what you are going through.

You are a wonderful person for taking in your grandson. I really admire you, and think there should be more people like you in the world.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: lakombert@... <lakombert@...>Subject: Re: ( ) New member intro Date: Wednesday, October 21, 2009, 4:58 PM

In a message dated 10/21/2009 6:46:02 A.M. Eastern Daylight Time, lorrainedavidson12@ .co. uk writes:

This sounds incredible hard to deal with. Were you with him when he went to NY, was there something that could have triggered the behaviour?

I didn't go to NY with him, my husband did. Someone had to stay in TN to maintain the farm. He saw his mother and her family when he was there and we're almost positive that's what triggered him. It's been nonstop ever since.

The problem with my friends is that they all have grown children and they, like us, are retired and are living their lives to the fullest. They travel when they want, they don't have small children to take with them. They can't imagine going through what we go through.

But we love Dillon and his parents have already abandoned him. He was physically and sexually abused and neglected by his mother. Our son refuses to have anything to do with him because he's "damaged goods". So what? We're supposed to give up on him too? No, we won't do that. We'll do what is necessary to give him the best life possible.

But I have to admit, its not easy sometimes.

Laurie

[Guest guest]

My goodness Laurie, this is such a tragic chain of events. You mentioned that Dillon was misdiagnosed several times, has anyone considered post traumatic stress disorder (PTSD)? I don't know what your Custody Order states, but if you can get that dx, on top of the ODD/AS dx, the courts will be forced to recognize her as a threat to his well being and then it is up to her to push for reunification therapy if she has any interest in ever having a relationship with Dillon. In the meantime you'll have the legal ammo behind you to keep him away from his perpetrator. I can not imagine your anguish in having to bring Dillon to face the very person he is most terrified of. Your situation is such a tragedy. Stay strong!

From: lakombert@... <lakombert@...>Subject: Re: ( ) New member intro Date: Wednesday, October 21, 2009, 6:58 PM

In a message dated 10/21/2009 6:46:02 A.M. Eastern Daylight Time, lorrainedavidson12@... writes:

This sounds incredible hard to deal with. Were you with him when he went to NY, was there something that could have triggered the behaviour?

I didn't go to NY with him, my husband did. Someone had to stay in TN to maintain the farm. He saw his mother and her family when he was there and we're almost positive that's what triggered him. It's been nonstop ever since.

The problem with my friends is that they all have grown children and they, like us, are retired and are living their lives to the fullest. They travel when they want, they don't have small children to take with them. They can't imagine going through what we go through.

But we love Dillon and his parents have already abandoned him. He was physically and sexually abused and neglected by his mother. Our son refuses to have anything to do with him because he's "damaged goods". So what? We're supposed to give up on him too? No, we won't do that. We'll do what is necessary to give him the best life possible.

But I have to admit, its not easy sometimes.

Laurie

[Guest guest]

Oh my gosh, you are an angel for taking this little boy under your wing I cant imagine how hard this is for you! I cant give you where to go, or who to turn to because I am in the same boat most of us are in, there really are no 'go to's' for children with AS, it has to all come from the heart. Sometimes I think that all the psychologists and medication make our worlds spin faster and harder.. I know that w/o meds my son would be extremely unfocused and this would impact his life even more than it already is not to mention his anxiety(!) but I also think sometimes that life w/o it would mean life w/o side effects and that would be nice.

The first step in all this is to recognize and admit that life is going to have lots and lots of ups and downs (as you have already experienced) but on the other hand you have experienced the incredibles of having an aspie by seeing how fast this child can succeed academically! The rest comes from the heart and lots and lots and lots and lots of talking to anyone who is POSTIVE in your situation. Stay away from the negative people, they can and WILL make matters worse for you. I know that seems harsh if they are friends or family but honestly you have enough to deal with with raising a child with AS, you dont need any additional pressure from anyone.

Good luck to you! If you ever need to vent I am happy to listen ( ) New member intro Date: Wednesday, 21 October, 2009, 10:02

Hi my name is Laurie. My husband and I are raising our 8 year old grandson and have been since he was 2 years old. He was abused and neglected by his mother and completely ignored by his father. His father is our son. When he first came to us, it was suggested that he may have PDD. We brought him to the top developmental specialist where we lived at the time and he ruled it out. Dillon didn't walk or talk until he was well past his 2nd birthday. He was developmentally delayed (due to severe neglect we believe), he was diagnosed as having OCD at age 3. He was also diagnosed as having a high anxiety level and has been on prozac since age 4. He as also diagnosed with RAD.Dillon was prone to rages and temper tantrums that could last anywhere from 15 minutes to hours on end. Psychiatrist increased his prozac. He caught up academically and was ahead of most of his classmates once he got into school and he absorbed information like a sponge. Socially though he has never done well. He's never fit in. He's always preferred to be with adults than children. He would have crying jags, etc.We moved from NY to TN and alot of his problems seemed to go away. He actually seemed like a different child. Things were wonderful for 7 months. No problems. He went to NY for his birthday and when he came back, all the old stuff started. He's back to the rages and hours long temper tantrums, his prozac has been tripled, etc. He has now even started to become violent. He's kicked and hit me, thrown fist sized rocks at my husband, and hit me in the back with a crystal.In July we had a forensic psychistric do an evaluation of him. They told us that he had Aspergers not RAD, not OCD like we believed all these years. They also said he has ODD. ASPERGERS??? PDD and AS were ruled out years ago! I've been reading up on AS. I just feel lost. Two weeks ago my husband went to my grandson's counselor and said that they need to help us because he's afraid someone in our house is going to get hurt and someone is going to end up in jail.We love this little boy so very much. But we don't know where to turn to for help. We've had friends tell us to "dump him in a foster home, he's not your child". But he's our grandchild and we love him fiercely. He has already had his parents who have given up on him. We don't want to give up on him too. But we need to understand how to help him and how to help ourselves. Any suggestions on where to start? His counselor really isn't much help. He got us a case manager and she is zero help. Thank you and I'm sorry this is so long.Laurie

[Guest guest]

I am fairly new to group-=diagnosed 18 years ago with Fibromyalgia(WRONG), then

7 months ago blood and other tests confirmed I have Anklosying Spondilitis and

Psoriatic Arthritis, Crohns disease, Idiopathic Hypersomnia(A form of

Narcolepsy) and Periphereal Neuropathy. Basically a mess I am on 19 different

medications and additionally do not absorb and ty=ake injections or supplements

for B12, Iron, Vit D and C. I can not seem to find a good med to keep me awake

as they ware off quickly or I develop a tolerance or they are not absorbing

properly.

Does anyone out there have this absorbtion issue?

They tell me all these conditions are connected, it is a immune thing - any

comments? Some in my family think I should go to Mayo Clinic I am at a loss

right now and have days where I do not function at all. I havre been home

since Xmas and on disability but not making it.

I have been on Humira for 5 months but have had multiple issues getting sick and

having to go off it, so currently it has been 2 weeks ON.

Pamela Arnow

Antioch, IL

create1126@...

[Guest guest]

Not that I have much experience with anything else I do however have some

experience where medications just simply become less affective than they were as

well as others that simply don't get absorbed as they should. It is to say the

least a pain! May I gingerly suggest (not wanting to appear to be some sort of

expert because I definitely am not) that you ask your pharmacist (or doctor)

about your medications, for instance:

It has been found that grapefruit and other common fruit juices, including

orange and apple, can substantially decreasing the absorption of certain

medications, potentially wiping out their beneficial effects, or for instance

some people take their meds with with a glass of milk not knowing that

calcium/dairy negates the effectiveness of the antibiotics.

It is all a learning curve,

[Guest guest]

Hi Pam,

Do a search on " leaky gut " . It sounds to me like this may be a problem for you.

Carol_DM

[Guest guest]

Thanks for all the info/

I have had alot of stomach tests wouldnt they catch that?

Pamela Arnow

847-774-6474

create1126@...

Treasurer

Antioch Fine Arts Foundation

983 Main Street

Antioch, IL 60002

1-847-838-2274

www.antiochfinearts.org

rheumatic Re: New Member Intro

Hi Pam,

Do a search on " leaky gut " . It sounds to me like this may be a problem for you.

Carol_DM

[Guest guest]

Totally agree with Carol DM ... leaky gut' could be a major contributor to your

problem.

Maz

>

> Hi Pam,

>

> Do a search on " leaky gut " . It sounds to me like this may be a problem for

you.

> Carol_DM

>

>

[Guest guest]

Not necessarily. May I suggest you look it up on the net yourself before you

check with your medical team. It's always a little bit easier if you know what

you are talking about.

Maz

>

>

> Thanks for all the info/

> I have had alot of stomach tests wouldnt they catch that?

>

> Pamela Arnow

> 847-774-6474

> create1126@...

>

> Treasurer

> Antioch Fine Arts Foundation

> 983 Main Street

> Antioch, IL 60002

> 1-847-838-2274

> www.antiochfinearts.org

>

>

>

>

> rheumatic Re: New Member Intro

>

>

>

>

>

> Hi Pam,

>

> Do a search on " leaky gut " . It sounds to me like this may be a problem for

you.

> Carol_DM

>

>

[Guest guest]

Hi Maz,

did your docs make any attempt to find out the illnesses, infections in your

past?

did they do any lab cultures, any serology to detect antibodies, etc

how did they arrive to the successful combination?

thanks,

Ana

________________________________

From: Maz <mazm_mm@...>

rheumatic

Sent: Thu, June 3, 2010 4:48:55 PM

Subject: rheumatic Re: New Member Intro

 

Not necessarily. May I suggest you look it up on the net yourself before you

check with your medical team. It's always a little bit easier if you know what

you are talking about.

Maz

>

>

> Thanks for all the info/

> I have had alot of stomach tests wouldnt they catch that?

>

> Pamela Arnow

> 847-774-6474

> create1126@...

>

> Treasurer

> Antioch Fine Arts Foundation

> 983 Main Street

> Antioch, IL 60002

> 1-847-838-2274

> www.antiochfinearts.org

>

>

>

>

> rheumatic Re: New Member Intro

>

>

>

>

>

> Hi Pam,

>

> Do a search on " leaky gut " . It sounds to me like this may be a problem for

you.

> Carol_DM

>

>

[Guest guest]

actually am in BC canada.

monique

Hi ,

Yes I do count myself lucky to have found this particular doctor & yes I

live in Oz but not Sydney, to generalise I live in Melbourne. I am

assuming you are in USA ??

Cheers,

Maz

[Guest guest]

Ok - sorry,

I have another friend who is in BC

( & strangely enough I did know it was in Canada...lol -- not having a go, just

some fun so don't be offended)

I have family in Ottowa, Toronto & Vancouver as well, so know Canada fairly

well.

Maz

>

> actually am in BC canada.

>

> monique

>

> Hi ,

>

> Yes I do count myself lucky to have found this particular doctor & yes I

> live in Oz but not Sydney, to generalise I live in Melbourne. I am

> assuming you are in USA ??

>

> Cheers,

> Maz

>

[Guest guest]

so maz you've been here then? i was in sydney 2x - 04 and 08 as my

husband works with a company based there.

monique

Ok - sorry,

I have another friend who is in BC

( & strangely enough I did know it was in Canada...lol -- not having a

go, just some fun so don't be offended)

I have family in Ottowa, Toronto & Vancouver as well, so know Canada

fairly well.

Maz

[Guest guest]

Yes a long long time ago ... (although it seems to me to be just a little

while...lol)  I left here in  & arrived in Ottowa to see my aunt & her family

at 11.30pm & it was freezing!!  but they weren't home so I stayed for 1 day

then went to Toronto to catch up with my uncle & his family, stayed there for 2

wks then headed off by coach/car/train to see Canada & USA - returned

to Toronto first., stayed another 2 wks then back to Ottowa for 2 more weeks

then across to Vancouver then down to fly out of LA for home.  I was on a 6 mth

leave of absence from my job so had plenty of time.  I could have easily lived

over there, it was lovely!

 

________________________________

From: Sauve <moniquesauve@...>

rheumatic

Sent: Fri, 11 June, 2010 6:28:51 AM

Subject: rheumatic Re: New Member Intro

 

so maz you've been here then? i was in sydney 2x - 04 and 08 as my

husband works with a company based there.

monique

Ok - sorry,

I have another friend who is in BC

( & strangely enough I did know it was in Canada...lol -- not having a

go, just some fun so don't be offended)

I have family in Ottowa, Toronto & Vancouver as well, so know Canada

fairly well.

Maz

[Guest guest]

I have had some endocrinologists tell me that there is no such thing as leaky

gut so I think not all doctors know about it or are of the same opinion as my

endo.

carol_DM

[Guest guest]

I've heard that too from endos. Even heard it from gastroenterologists.

In Pub Med, they can search " Permeable Intestine "

http://www.ncbi.nlm.nih.gov/pubmed/19855405

http://www.ncbi.nlm.nih.gov/pubmed/20139625

Bob & Carol Zarn wrote:

>

>

> I have had some endocrinologists tell me that there is no such thing

> as leaky gut so I think not all doctors know about it or are of the

> same opinion as my endo.

> carol_DM

>

>

[Guest guest]

Hello all- My name is and I joined this group to learn more about

antibiotic treatment for RA and AS from the people that use it. I also have a

laundry list of other diseases, but I guess antibiotics won't help those. So I

am going to lurk and learn, if that is OK.

in SC

[Guest guest]

Hi ,,,

You couldn't have picked a better site to get answers to your questions,

everyone here is helpful, knowledgeable & willing to hold your hand every inch

of the journey.

>

> Hello all- My name is and I joined this group to learn more about

antibiotic treatment for RA and AS from the people that use it. I also have a

laundry list of other diseases, but I guess antibiotics won't help those. So I

am going to lurk and learn, if that is OK.

>

> in SC

>

[Guest guest]

Chris:

Welcome to the group! Another place that you may want to " lurk " is the website

www.kickAS.org. This website provides information related to the specific

infection that is related to AS and the starch free diet in combination with the

antibiotic portocol.

There are quite a few AS patients using the antibiotic protocol who post

frequently on the patient discussion forum at www.roadback.org, that too might

be worth checking out.

Good luck in your search for the best treatment to regain your health.

Cheryl

Sent from my Verizon Wireless BlackBerry

rheumatic New member intro

Hello all- My name is and I joined this group to learn more about

antibiotic treatment for RA and AS from the people that use it. I also have a

laundry list of other diseases, but I guess antibiotics won't help those. So I

am going to lurk and learn, if that is OK.

in SC

[Guest guest]

Welcome Chris. You may be surprised what other problems are helped with

antibiotics. We have a lot of lurkers(GIGGLE) here and at times they even

shout out and add something we never thought of (smile). I am assuming you

have read the books on antibiotics? You have read all the histories and the

facts and answers page right? If not these are a lot of help in learning

about antibiotics. You can also let us know all about you when you are

ready.

Hugs,

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of phylliscrubaugh

Hello all- My name is and I joined this group to learn more about

antibiotic treatment for RA and AS from the people that use it. I also have

a laundry list of other diseases, but I guess antibiotics won't help those.

So I am going to lurk and learn, if that is OK.

in SC

[Guest guest]

Nikki – I don’t know what area you are in but there is a support group that meets in Sugar Land called Aspie of Houston. There is also an organization called FOCUS (Focusing on Children Under the Spectrum) whose main office is in Stafford. They also have satellite offices in Katy and Cypress. From: [mailto: ] On Behalf Of NikkiSent: Thursday, February 24, 2011 10:07 AM Subject: ( ) New Member Intro Good morning all! I recently joined the list and wanted to introduce myself. My name is Nikki and I live in southeast Texas, near Houston. I have two kiddos: ,12, and , my Aspie, age 9. I was very glad to find an online support group such as this. I haven't been able to locate an in-person support group in this area. I welcome the opportunity to share ideas and experiences. I've already learned much from this group! The weighted blankets - brilliant! My son's OT uses a weighted vest during his sessions and he LOVES having multiple blankets even in the hottest weather. My mother is a gifted seamstress and I'll be imposing upon her to create a pattern and make us a few. He also benefits from compression shirts and underwear. We're also converting to a GFCF diet. We'd started this before with but got away from it for about several years due to job loss. Food banks don't generally have GF foods to distribute. lol (that's a whole 'nother rant!) My recent trek on the Atkin's diet uncovered a gluten sensitivity in me so I'll be switching with him. I'm looking forward to getting to know everyone. You're all in my thoughts and prayers. Nikki