for new members

[Guest guest]

I know for those of you who are new to an AIH diagnosis, this time is very frightening. The posts you read most frequently are from those having severe problems -- not that this is a piece of cake for any of us.

I thought it might be useful for you to hear how AIH can go, sometimes. I was diagnosed 5/00 with AIH, bright orange, stumbling mentally (probably just from fatigue.) I was quickly diagnosed and began Prednisone and Imuran, at 80 mg and 100 mg, respectively. My doctor says I was "very sick", and I've found him generally to understate anything negative.

Today he tells me I can continue reducing Prednisone (I'm now at 7.5 mg), that he might suggest I depend entirely on Imuran except for the initial severity of my case. He says my fatigue should diminish gradually and soon, especially as I'm able to lose the weight I gained from the sudden, early hit of Prednisone. He even says I can drink if I wish to! (I don't have any particular desire to, except for the occasional celebratory, ceremonial glass.)

I'm going through this not to talk about myself, but to reassure new members that the prognosis isn't necessarily too awfully grim. In my particular situation, I can't go back to my old life, but I can look forward to a different, rewarding one. It may work out that way for you, too.

Best wishes.

Harper AIH 5/00

[Guest guest]

Thanks for sharing your story. It has really helped me to read about other

people with this disease (which I had never even heard of until January) and

the treatments that they are receiving.

I am currently on 60 mg Prednisone and 50 mg Imuran. I also am taking

Prevacid, Synthroid (hypothyroidism since 1987), calcium with vitamin D, and

Feosol. Some days I feel like all I do is pop pills!!!! Anyway, I am to

reduce Pred to 40 mg starting next week for one month, then reduce to 20 mg.

This seems to be a quite a reduction from what I have heard. Should I expect

any major withdrawal symptoms?

Again, thanks for sharing your story and thanks to all of you out there that

take the time to lend your support.

AIH (01/01)

Illinois

[Guest guest]

re reduction: I think you will probably have blood tests run before making the reduction; my guess is that this number is a prediction, a plan, rather than a certainty.

And re never having heard of AIH before January -- similar for me. Didn't even know quite where the liver was or what it did. What an education!

Harper (AIH 5/00)

[Guest guest]

Sorry, I neglected to address my last message (shown in a forward below.) It was in response to a message from , Calyco59.

Harper AIH 5/00

re reduction: I think you will probably have blood tests run before making the reduction; my guess is that this number is a prediction, a plan, rather than a certainty.

And re never having heard of AIH before January -- similar for me. Didn't even know quite where the liver was or what it did. What an education!

Harper (AIH 5/00)

[Guest guest]

why you need to file a vaccine injury claim NOW

I have recently heard that many attorneys are not taking anymore

cases. If this should happen to you file pro se [while lookig for an

attorney] failing to file a claim immediately will result in the loss

of your childs rights under the law. Currently one must file within

36 mo. of the first " table injury " ie if a child had a motor delay at

12 mo they would concider that as the start of the 36 mo. time frame.

I realize that we parents werent privy to the list of " table

injuries " and that many diseases have similar symptoms. I also

understand that parents arent diagnosticians. This law was

intentionally put in place to screw the vaccine injured out of being

compensated. If there is any question in your mind file. Otherwise

your rights under the law will be terminated.

here is the info.

http://www.hrsa.gov/vaccinecompensat...ling_claim.htm

I will re post this thread every week so as new people will have the

resources to preserve thier rights so please be patient.

Also note you must file even if you have not recieved an official

diagnosis as of yet. Any delay in development is used by the gvt. as

a start point on your 36 months. For those who have already been

denied by the gvt. You may now file in state court.

Good luck

" the organs targeted by Thimerosal are the nerves, the brain and its

coverings,and the reproductive organs. " " It has been

linked to behavioral anorexia,motor delays,ataxia,and some times

coma " " thimerosal can cause fetal death,and developmental delays "

Bleezard M.d. Sigma aldrich health and safety director

[Guest guest]

> This law was

> intentionally put in place to screw the vaccine injured out of being

> compensated.

Yup.

I refer to it as the National Vaccine Injury kangaroo Court.

If the law wasn't intended to railroad the victims, they'd be using a real court

under real

rules of evidence with a real, confirmed by Congress, judge handling it all, and

judgement

on the pleadings in Plaintiff's favor whenever the vaccine manufacturers didn't

comply with

discovery, just like in real court where both parties are equal and the outcome

hasn't been

predetermined.

Andy

[Guest guest]

Dr. is no longer with WPI, so their website should not be listed

under his name (especially since it is also listed under

" Whittemore- Institute (XMRV) "

Other than that, it looks good.

Steve M in PA

On Mar 22, 2012 4:20 PM, " marti_zavala " <marti_zavala@...> wrote:

>

> Hi group,

> I drafted this one weekend for a new member. Would anyone like to add to

it? Then this can be made available for new people.

>

> Thanks,

> Marti

>

> Help:

>

http://help./kb/index?locale=en_US & page=product & y=PROD_GRPS#gs-panel1

>

>

> Current proposed ME/CFIDS Criteria

> http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

>

>

> Some good general information websites:

> http://www.cfids-me.org/links.html#hypotheses

>

> http://www.dfwcfids.org/admin/membpack.htm

>

> www.ahummingbirdsguide.com

>

> http://www.prohealth.com/me-cfs/index.cfm

>

>

> How to explain to someone what ME/CFIDS feels like

>

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/

>

>

> Some good forums

>

>

> www.phoenixrising.me

>

> http://www.prohealth.com/community/index.cfm

>

> http://curezone.com/forums/f.asp?f=67

>

>

> Research

> http://www.dfwcfids.org/research/index.htm

>

> http://phoenixrising.me/archives/category/research

>

>

> Nationally recognized specialists

>

> Dr. Cheney

> http://www.dfwcfids.org/medical/cheney.html

>

> Dr. Klimas

>

http://nsunews.nova.edu/worlds-leading-chronic-fatigue-syndrome-researchers-join\

s-nova-southeastern-university

> Rich Van Konynenbeg (researcher)

>

http://chronicfatigue.about.com/gi/o.htm?zi=1/XJ & zTi=1 & sdn=chronicfatigue & cdn=he\

alth & tm=1128 & f=21 & tt=2 & bt=1 & bts=1 & zu=http%3A//planetthrive.com/2009/06/glutathio\

ne-depletion%25E2%2580%2594methylation-cycle-block-hypothesis-the-simple-approac\

h/

>

> Dr. Pall

> http://thetenthparadigm.org/

>

> Dr. Myhill

> www.drmyhill.co.uk

>

> Dr. Dan

> http://phoenixrising.me/archives/6103

> http://wpinstitute.org/

>

> Dr. Garth Nicholson

> http://www.immed.org/index.htm

>

> Dr. Byron Hyde

> http://www.nightingale.ca/index.php?target=home

>

> Dr. Bell

> http://davidsbell.com/

>

> Dr. Montoya

> http://chronicfatigue.stanford.edu/

> http://www.youtube.com/watch?v=Riybtt6SChU & feature=player_embedded

>

> Whittmore- Institute (XMRV)

> http://wpinstitute.org/

>

> Testing

> Fatigue Testing

>

http://www.pacific.edu/Academics/Schools-and-Colleges/College-of-the-Pacific/Aca\

demics/Departments-and-Programs/Sport-Sciences/About/Pacific-Fatigue-Lab/For-Pat\

ients.html

>

> The latest experimental research-level medications

> Rituximab

> http://phoenixrising.me/archives/1977

>

> Chimerix

> http://phoenixrising.me/archives/6103

>

> http://www.chimerix.com/about-chimerix/category/commitment/

>

> Valcyte

> http://www.valcyte.com/valcyte/

>

> Ampligen

> http://www.hemispherx.net/content/rnd/drug_candidates.htm

[Guest guest]

CFS/ME Forums:

http://www.mecfsforums.com/

http://www.co-cure.org/

http://cfsknowledgecenter.ning.com/

HHV6 Sites:

http://www.hhv-6foundation.org/

http://www.redlabs.be/red-labs/our-science/viral-infections.php

http://www.wisconsinlab.com/

https://www.hhv6.jottit.com/

CFS & Gulf War Syndrome:

http://www.ccid.org/about.htm

http://www.ei-resource.org/illness-information/environmental-illnesses/gulf-war-\

syndrome/

TREATMENT SITES:

http://chronicfatigue.about.com/b/2012/02/02/oxidative-stress-in-chronic-fatigue\

-syndrome.htm

http://cqs.com/immunedisorders.pdf

Good CFS/ME/GWI/Autism/Lyme Blogs:

http://cfsstraighttalk.blogspot.com

http://vlgonvalcyte.wordpress.com/

http://cfswarrior.blogspot.com/

http://slightlyalive.blogspot.com/

http://alt-webring.com/cgi-bin/list.pl?ringid=MECFSBN;siteid=cfsuntied2

>

> Hi group,

> I drafted this one weekend for a new member. Would anyone like to add to it?

Then this can be made available for new people.

>

> Thanks,

> Marti

>

> Help:

> http://help./kb/index?locale=en_US & page=product & y=PROD_GRPS#gs-panel1

>

>

> Current proposed ME/CFIDS Criteria

> http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

>

>

> Some good general information websites:

> http://www.cfids-me.org/links.html#hypotheses

>

> http://www.dfwcfids.org/admin/membpack.htm

>

> www.ahummingbirdsguide.com

>

> http://www.prohealth.com/me-cfs/index.cfm

>

>

> How to explain to someone what ME/CFIDS feels like

>

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/

>

>

> Some good forums

>

>

> www.phoenixrising.me

>

> http://www.prohealth.com/community/index.cfm

>

> http://curezone.com/forums/f.asp?f=67

>

>

> Research

> http://www.dfwcfids.org/research/index.htm

>

> http://phoenixrising.me/archives/category/research

>

>

> Nationally recognized specialists

>

> Dr. Cheney

> http://www.dfwcfids.org/medical/cheney.html

>

> Dr. Klimas

>

http://nsunews.nova.edu/worlds-leading-chronic-fatigue-syndrome-researchers-join\

s-nova-southeastern-university

> Rich Van Konynenbeg (researcher)

>

http://chronicfatigue.about.com/gi/o.htm?zi=1/XJ & zTi=1 & sdn=chronicfatigue & cdn=he\

alth & tm=1128 & f=21 & tt=2 & bt=1 & bts=1 & zu=http%3A//planetthrive.com/2009/06/glutathio\

ne-depletion%25E2%2580%2594methylation-cycle-block-hypothesis-the-simple-approac\

h/

>

> Dr. Pall

> http://thetenthparadigm.org/

>

> Dr. Myhill

> www.drmyhill.co.uk

>

> Dr. Dan

> http://phoenixrising.me/archives/6103

> http://wpinstitute.org/

>

> Dr. Garth Nicholson

> http://www.immed.org/index.htm

>

> Dr. Byron Hyde

> http://www.nightingale.ca/index.php?target=home

>

> Dr. Bell

> http://davidsbell.com/

>

> Dr. Montoya

> http://chronicfatigue.stanford.edu/

> http://www.youtube.com/watch?v=Riybtt6SChU & feature=player_embedded

>

> Whittmore- Institute (XMRV)

> http://wpinstitute.org/

>

> Testing

> Fatigue Testing

>

http://www.pacific.edu/Academics/Schools-and-Colleges/College-of-the-Pacific/Aca\

demics/Departments-and-Programs/Sport-Sciences/About/Pacific-Fatigue-Lab/For-Pat\

ients.html

>

> The latest experimental research-level medications

> Rituximab

> http://phoenixrising.me/archives/1977

>

> Chimerix

> http://phoenixrising.me/archives/6103

>

> http://www.chimerix.com/about-chimerix/category/commitment/

>

> Valcyte

> http://www.valcyte.com/valcyte/

>

> Ampligen

> http://www.hemispherx.net/content/rnd/drug_candidates.htm

>

[Guest guest]

I would add http://forums.phoenixrising.me/content.php .

Ellen

Re: For new members

CFS/ME Forums:

http://www.mecfsforums.com/

http://www.co-cure.org/

http://cfsknowledgecenter.ning.com/

HHV6 Sites:

http://www.hhv-6foundation.org/

http://www.redlabs.be/red-labs/our-science/viral-infections.php

http://www.wisconsinlab.com/

https://www.hhv6.jottit.com/

CFS & Gulf War Syndrome:

http://www.ccid.org/about.htm

http://www.ei-resource.org/illness-information/environmental-illnesses/gulf-war-\

syndrome/

TREATMENT SITES:

http://chronicfatigue.about.com/b/2012/02/02/oxidative-stress-in-chronic-fatigue\

-syndrome.htm

http://cqs.com/immunedisorders.pdf

Good CFS/ME/GWI/Autism/Lyme Blogs:

http://cfsstraighttalk.blogspot.com

http://vlgonvalcyte.wordpress.com/

http://cfswarrior.blogspot.com/

http://slightlyalive.blogspot.com/

http://alt-webring.com/cgi-bin/list.pl?ringid=MECFSBN;siteid=cfsuntied2

>

> Hi group,

> I drafted this one weekend for a new member. Would anyone like to add to it?

Then this can be made available for new people.

>

> Thanks,

> Marti

>

> Help:

>

http://help./kb/index?locale=en_US & page=product & y=PROD_GRPS#gs-panel1

>

>

> Current proposed ME/CFIDS Criteria

> http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

>

>

> Some good general information websites:

> http://www.cfids-me.org/links.html#hypotheses

>

> http://www.dfwcfids.org/admin/membpack.htm

>

> www.ahummingbirdsguide.com

>

> http://www.prohealth.com/me-cfs/index.cfm

>

>

> How to explain to someone what ME/CFIDS feels like

>

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/

>

>

> Some good forums

>

>

> www.phoenixrising.me

>

> http://www.prohealth.com/community/index.cfm

>

> http://curezone.com/forums/f.asp?f=67

>

>

> Research

> http://www.dfwcfids.org/research/index.htm

>

> http://phoenixrising.me/archives/category/research

>

>

> Nationally recognized specialists

>

> Dr. Cheney

> http://www.dfwcfids.org/medical/cheney.html

>

> Dr. Klimas

>

http://nsunews.nova.edu/worlds-leading-chronic-fatigue-syndrome-researchers-join\

s-nova-southeastern-university

> Rich Van Konynenbeg (researcher)

>

http://chronicfatigue.about.com/gi/o.htm?zi=1/XJ & zTi=1 & sdn=chronicfatigue & cdn=he\

alth & tm=1128 & f=21 & tt=2 & bt=1 & bts=1 & zu=http%3A//planetthrive.com/2009/06/glutathio\

ne-depletion%25E2%2580%2594methylation-cycle-block-hypothesis-the-simple-approac\

h/

>

> Dr. Pall

> http://thetenthparadigm.org/

>

> Dr. Myhill

> www.drmyhill.co.uk

>

> Dr. Dan

> http://phoenixrising.me/archives/6103

> http://wpinstitute.org/

>

> Dr. Garth Nicholson

> http://www.immed.org/index.htm

>

> Dr. Byron Hyde

> http://www.nightingale.ca/index.php?target=home

>

> Dr. Bell

> http://davidsbell.com/

>

> Dr. Montoya

> http://chronicfatigue.stanford.edu/

> http://www.youtube.com/watch?v=Riybtt6SChU & feature=player_embedded

>

> Whittmore- Institute (XMRV)

> http://wpinstitute.org/

>

> Testing

> Fatigue Testing

>

http://www.pacific.edu/Academics/Schools-and-Colleges/College-of-the-Pacific/Aca\

demics/Departments-and-Programs/Sport-Sciences/About/Pacific-Fatigue-Lab/For-Pat\

ients.html

>

> The latest experimental research-level medications

> Rituximab

> http://phoenixrising.me/archives/1977

>

> Chimerix

> http://phoenixrising.me/archives/6103

>

> http://www.chimerix.com/about-chimerix/category/commitment/

>

> Valcyte

> http://www.valcyte.com/valcyte/

>

> Ampligen

> http://www.hemispherx.net/content/rnd/drug_candidates.htm

>

[Guest guest]

Dr. Dan should be listed as Sierra Internal Medicine AND Simmaron

Research

http://www.simmaronresearch.org/

His research facility and lab, along with new offices are impressive. He's

moving along at great speed with research, new researchers working full time.