Comments

[Guest guest]

In a message dated 11/30/2005 3:57:15 A.M. Eastern Standard Time,

CEwing2761@... writes:

As Dr. Phil might say, " How's This Been Working For You " ?

This group works great for me ! I also belong to a fibro group. There are

many lyme research fund raising places ....of course there is the Drulle Fund

....you can find that on the Lyme Disease Association web page. This funding

goes to research and was started by the LDA and is handled by MY LLMD ....who

is one of the best physicians that I have ever known. _Lyme Disease

Association_ (http://www.lymediseaseassociation.org/DrulleFund.html) She is Dr

Drulles

widow , also a physician who works tirelessly to treat her patients and to be

a lyme patient advocate. I don't quite understand what this post is about ?

I reallize many of these diseases and/or disorders run together with their

symptoms , but they are not one in the same. Lyme is different from all of

them. They are EACH unique in their own right. I cannot see how coming together

as a united front will help anyone ? To me it seems that it would just confuse

each groups issues. They are all different. Lyme aid is a support group

started by a lyme sufferer and its a place where we can come to discuss our

lyme

issues. Many of us , since we spend fortunes on doctors , testing and

medications are not able to fund so many different groups on a whole. Many of

us

just want answers to our questions about lyme. I love this support group and I

for one am to sick to 'march on the hill' at this juncture in my life. YES

....we do need more funding and research ..we do need a CURE ...but frankly I

think until someone WITH some clout gets this disease we will just wander

aimlessly searching for a cure. WE here are a united front. United against Lyme

disease. Putting them all together would create havoc as far as I can see.

Maybe

I misunderstood this post ? Would not be the first time ! Have a better day

! Kat

[Guest guest]

In a message dated 11/30/2005 8:55:59 A.M. Eastern Standard Time,

rod@... writes:

believe I harmed myself by trying to exercise my way out of this hideous

> illness.

> Furthermore, I view the spirituality approach, much as I do the " All In

The

> Head " babble.

I find the spirituality approach to be both helpful and necessary. To some

its what keeps them healthy and feeling good. Exercise is another factor that

is very important. TOO MUCH ...YES .....not a good thing .BUT too much of

anything is harmful .....everything needs to be done in moderation and what

works for some won't work for others . It not for me to decide what works for a

member of my group ....

[Guest guest]

Would you mind submitting this to be published as a op/ed article at

LymeBlog.com ? It might help if some context of the graded exercise article or

letter were included.

I happen to agree that you can't " exercise " your way out of chronic illness.

There was a recent news article about a Seton Hall basketball player who " just

needed to work harder " because he had been assured by his doctor that his

fatigue had nothing to do with the Lyme disease he was treated for last year.

Seton Hall player just ''out of shape'' - Not Lyme disease coming back

http://lymeblog.com/modules.php?name=News & file=article & sid=232

And there is much in the news now about Wyatt Sexton the FSU quarterback. I

feel we should all watch his progress.

http://lymeblog.com/modules.php?name=News & file=article & sid=254

Having had Lyme disease myself for 13 years now, my experience has been that

the symptoms are only made worse if you push yourself too far. I used to enjoy

weight training and backpacking. And, as you mention, well meaning friends and

family who try to encourage you to just " push yourself a little " can be very

discouraging.

CEwing2761@... wrote: << We value your feedback! Please feel free

to share your input about how we

can make this newsletter as helpful to you as possible. Send your comments

and suggestions to _fmonline@..._ (mailto:tofmonline@...) >>

Perhaps graded exercise and spiritualization are important to a few.

However, some of us do not feel either gets to the core of our problems.

I (for one), feel that exercise can be detrimental, as I was once a near

world class athlete.

I believe I harmed myself by trying to exercise my way out of this hideous

illness.

Furthermore, I view the spirituality approach, much as I do the " All In The

Head " babble.

I believe groups like yours do more harm to the community by promoting (thus

legitimizing these concepts), as evidenced by the lack of any real progress

over the past 20 years.

I would like to see major groups (like this Fibromyalgia one), come together

with others (i.e., like CFS, CFIDS, Chronic Lyme Disease, RA, Gulf War

Syndrome, Mycoplasma, Multiple Chemical Sensitivity, Post Polio Syndrome and

others).

As Dr. Phil might say, " How's This Been Working For You " ?

A united front might help obtain greater recognition (thus funding), which

is so long overdue.

Bits and pieces (by fragmented groups), has not resulted in the kind of

progress needed.

Welsleyites and the insurance companies continue to perpetuate their graded

exercise and cognitive behavioral regimens, which are often detrimental and

continue to divert the small funds (which are available), away from research

into biological research.

My thoughts are not new.

Isn't it time groups like yours come together, so we can all unit with

greater clout?

[Guest guest]

> Perhaps graded exercise and spiritualization are important to a few.

> However, some of us do not feel either gets to the core of our problems.

> I (for one), feel that exercise can be detrimental, as I was once a near

> world class athlete.

While I wasnt world class, I was extremely in shape. Now I am lucky if I

can walk a mile without falling out. I cannot do any 'major' exercises,

even doing some squats will leave me in immense nerve pain. I can, however,

do yoga , which I need to get my sorry butt back into doing! And I go riding

as often as I can, but not realy as much as I would like *-) I find that

if I keep riding, even once a week, it greatly reduces the pain. But if I

stop for a few weeks, it will take me several rides to get back into gear.

What I wouldnt give for the days where I could spend the day

riding/showing and expect to wake up alive in the a.m. *-)

> I believe I harmed myself by trying to exercise my way out of this hideous

> illness.

> Furthermore, I view the spirituality approach, much as I do the " All In

The

> Head " babble.

> I believe groups like yours do more harm to the community by promoting

(thus

> legitimizing these concepts), as evidenced by the lack of any real

progress

> over the past 20 years.

>

> I would like to see major groups (like this Fibromyalgia one), come

together

> with others (i.e., like CFS, CFIDS, Chronic Lyme Disease, RA, Gulf War

> Syndrome, Mycoplasma, Multiple Chemical Sensitivity, Post Polio Syndrome

and

> others).

>

> As Dr. Phil might say, " How's This Been Working For You " ?

>

> A united front might help obtain greater recognition (thus funding),

which

> is so long overdue.

> Bits and pieces (by fragmented groups), has not resulted in the kind of

> progress needed.

> Welsleyites and the insurance companies continue to perpetuate their

graded

> exercise and cognitive behavioral regimens, which are often detrimental

and

> continue to divert the small funds (which are available), away from

research

> into biological research.

>

> My thoughts are not new.

> Isn't it time groups like yours come together, so we can all unit with

> greater clout?

>

>

>

>

[Guest guest]

It's a great idea that groups come together as a united front, but I

doubt it will happen. I am one of the few chronic lymies who has

benefited from graduated exercise routines, and I do think that

keeping a positive attitude does help healing. That is not to say

that these approaches need to be the frontline of defense against

the offending organism!

I agree with your anger and indignation that too little research has

been done about the mysterious illnesses that you have listed. One

of my Lymie friends said " I don't care if you call it three headed

monkey disease; I just want to get treatment and get better. " These

are my feelings exactly, and many have tried so many, many

treatments to no avail due to inadaquate healthcare at the local

level.

Unfortunately, there is little research being done and fewer

treatment protocols in mainstream medicine to address the growing

need. We do have hope that places like Columbia will make advances

in Lyme research and move forward with credibility in western

medicine circles. I know the most I can do at my level is write to

my congressman, donate to organizations when possible, and be of

support to others on this bumpy road.

Best wishes,

cooky

>

> << We value your feedback! Please feel free to share your input

about how we

> can make this newsletter as helpful to you as possible. Send your

comments

> and suggestions to _fmonline@f..._ (mailto:tofmonline@f...) >>

>

> Perhaps graded exercise and spiritualization are important to a

few.

> However, some of us do not feel either gets to the core of our

problems.

> I (for one), feel that exercise can be detrimental, as I was once

a near

> world class athlete.

> I believe I harmed myself by trying to exercise my way out of this

hideous

> illness.

> Furthermore, I view the spirituality approach, much as I do

the " All In The

> Head " babble.

> I believe groups like yours do more harm to the community by

promoting (thus

> legitimizing these concepts), as evidenced by the lack of any

real progress

> over the past 20 years.

>

> I would like to see major groups (like this Fibromyalgia one),

come together

> with others (i.e., like CFS, CFIDS, Chronic Lyme Disease, RA,

Gulf War

> Syndrome, Mycoplasma, Multiple Chemical Sensitivity, Post Polio

Syndrome and

> others).

>

> As Dr. Phil might say, " How's This Been Working For You " ?

>

> A united front might help obtain greater recognition (thus

funding), which

> is so long overdue.

> Bits and pieces (by fragmented groups), has not resulted in the

kind of

> progress needed.

> Welsleyites and the insurance companies continue to perpetuate

their graded

> exercise and cognitive behavioral regimens, which are often

detrimental and

> continue to divert the small funds (which are available), away

from research

> into biological research.

>

> My thoughts are not new.

> Isn't it time groups like yours come together, so we can all unit

with

> greater clout?

>

>

>

>

[Guest guest]

I am assuming you are talking about Lyme Disease as a whole and not only the

problem this particular dear doctor is facing. I agree our religion. It should

not be rubbed in peoples faces. Maybe someone who posts here is not a believer.

This is America and we respect the right to worship as we have been called.

Pulling out groups by wether or not we are Christian or not does seperate us

greatly. United we stand, Divided we fall.

Thanks,

Millie

/Rodney <rod@...> wrote:

> Perhaps graded exercise and spiritualization are important to a few.

> However, some of us do not feel either gets to the core of our problems.

> I (for one), feel that exercise can be detrimental, as I was once a near

> world class athlete.

[Guest guest]

In a message dated 11/30/2005 7:06:24 P.M. Eastern Standard Time,

aiden424@... writes:

thought I had CFS for over 19 years before I found out I had

Lyme. I've been in a wheelchair for the last 17 years, I was

bedridden for the first two years. I've always been afraid to

exercise because it made me so sick, but since I've been on the

Ceftin and Diflucan I can tolerate some excercise now. I actually

feel okay after light excercise but still have to be careful to not

over do. I still use a wheelchair, but I've been able to do alot

more in the last 3 months then I have the last 19 years. So I kind

of think that for me, some exercise is good.

Kathy

Kathy ..sounds to me as if you are making progress !!! I will pray for your

recovery ! Maybe one day you will beat this disease .....keep up the moderate

exercise !!! Kat

[Guest guest]

In a message dated 11/30/2005 3:01:05 P.M. Eastern Standard Time,

brntcooky_2000@... writes:

I don't care if you call it three headed

monkey disease; I just want to get treatment and get better

So ..you have the threeheaded monkey disease also ? hmmmm...interesting !

hahahaha !

[Guest guest]

> Furthermore, I view the spirituality approach, much as I do the " All

> In The Head " babble....and as Dr Phil would say " How is that working for you? "

Well, if you are referring to how my spiritual beliefs in God being integral in

the healing process--or of those who call on Him in their healing process....I'd

say the doctor's report said it all!

I had 5 years of being bounced from specialist to specialist who could not

figure out what was wrong with me...so you can bet I had some faithful believers

in our church praying for me for YEARS...so by the time I found the doc who knew

what was wrong, connected all the dots, looked at the scientific lab results and

said he was baffled at how I was functioning on the level that I was when he

patients that were less ill than I am in vegetable states and in comas??? We'll

I'd have to have say that overwhelmingly the spiritual aspect of calling on God

for healing for 5 years was quite evident in the doctors report...so apparantly

those prayers and God's intervention has preserved me in a way that the doctor

was AMAZED in comparrison to his other patients with less of a problem than I

have.

So, I guess its working out pretty AMAZING for me!

And if you ask why I am not COMPLETELY healed...my story is not over yet...I

believe with God ALL things are possible...and in the process of this journey I

am learning and meeting a lot of new friends ...of which I count it a great

priviledge to pray for as well....even praying healing for those who DON'T

believe in the power of prayer.... :-D

One's disbelief or denial of the existence of God does not mean He does not

exist.

Blessings,

Dawn

[Guest guest]

> >

> > << We value your feedback! Please feel free to share your input

> about how we

> > can make this newsletter as helpful to you as possible. Send your

> comments

> > and suggestions to _fmonline@f..._ (mailto:tofmonline@f...) >>

> >

> > Perhaps graded exercise and spiritualization are important to a

> few.

> > However, some of us do not feel either gets to the core of our

> problems.

> > I (for one), feel that exercise can be detrimental, as I was once

> a near

> > world class athlete.

> > I believe I harmed myself by trying to exercise my way out of this

> hideous

> > illness.

> > Furthermore, I view the spirituality approach, much as I do

> the " All In The

> > Head " babble.

> > I believe groups like yours do more harm to the community by

> promoting (thus

> > legitimizing these concepts), as evidenced by the lack of any

> real progress

> > over the past 20 years.

> >

> > I would like to see major groups (like this Fibromyalgia one),

> come together

> > with others (i.e., like CFS, CFIDS, Chronic Lyme Disease, RA,

> Gulf War

> > Syndrome, Mycoplasma, Multiple Chemical Sensitivity, Post Polio

> Syndrome and

> > others).

> >

> > As Dr. Phil might say, " How's This Been Working For You " ?

> >

> > A united front might help obtain greater recognition (thus

> funding), which

> > is so long overdue.

> > Bits and pieces (by fragmented groups), has not resulted in the

> kind of

> > progress needed.

> > Welsleyites and the insurance companies continue to perpetuate

> their graded

> > exercise and cognitive behavioral regimens, which are often

> detrimental and

> > continue to divert the small funds (which are available), away

> from research

> > into biological research.

> >

> > My thoughts are not new.

> > Isn't it time groups like yours come together, so we can all unit

> with

> > greater clout?

> >

> >

> >

> >

[Guest guest]

> > Perhaps graded exercise and spiritualization are important to a few.

> > However, some of us do not feel either gets to the core of our

problems.

> > I (for one), feel that exercise can be detrimental, as I was once

a near

> > world class athlete.

> I have never seen anyone on this discussion rubbing religion in

anyones face. I think a little tolerence goes a long way. Lighten up

people! If I include a " thank God " or " God bless you "

I am not trying to convert you! Lets all be who we are and respect the

differences.

[Guest guest]

I thought I had CFS for over 19 years before I found out I had

Lyme. I've been in a wheelchair for the last 17 years, I was

bedridden for the first two years. I've always been afraid to

exercise because it made me so sick, but since I've been on the

Ceftin and Diflucan I can tolerate some excercise now. I actually

feel okay after light excercise but still have to be careful to not

over do. I still use a wheelchair, but I've been able to do alot

more in the last 3 months then I have the last 19 years. So I kind

of think that for me, some exercise is good.

Kathy

> > >

> > > << We value your feedback! Please feel free to share your

input

> > about how we

> > > can make this newsletter as helpful to you as possible. Send

your

> > comments

> > > and suggestions to _fmonline@f..._ (mailto:tofmonline@f...) >>

> > >

> > > Perhaps graded exercise and spiritualization are important to

a

> > few.

> > > However, some of us do not feel either gets to the core of

our

> > problems.

> > > I (for one), feel that exercise can be detrimental, as I was

once

> > a near

> > > world class athlete.

> > > I believe I harmed myself by trying to exercise my way out of

this

> > hideous

> > > illness.

> > > Furthermore, I view the spirituality approach, much as I do

> > the " All In The

> > > Head " babble.

> > > I believe groups like yours do more harm to the community by

> > promoting (thus

> > > legitimizing these concepts), as evidenced by the lack of any

> > real progress

> > > over the past 20 years.

> > >

> > > I would like to see major groups (like this Fibromyalgia one),

> > come together

> > > with others (i.e., like CFS, CFIDS, Chronic Lyme Disease, RA,

> > Gulf War

> > > Syndrome, Mycoplasma, Multiple Chemical Sensitivity, Post

Polio

> > Syndrome and

> > > others).

> > >

> > > As Dr. Phil might say, " How's This Been Working For You " ?

> > >

> > > A united front might help obtain greater recognition (thus

> > funding), which

> > > is so long overdue.

> > > Bits and pieces (by fragmented groups), has not resulted in

the

> > kind of

> > > progress needed.

> > > Welsleyites and the insurance companies continue to perpetuate

> > their graded

> > > exercise and cognitive behavioral regimens, which are often

> > detrimental and

> > > continue to divert the small funds (which are available), away

> > from research

> > > into biological research.

> > >

> > > My thoughts are not new.

> > > Isn't it time groups like yours come together, so we can all

unit

> > with

> > > greater clout?

> > >

> > >

> > >

> > >

[Guest guest]

GailI know that you will find many posts off topic here. I like to let anyone post just about anything they want because many of us were booted from another group in 2001 because most of us were on traditional methods of treatment. the owner of that group decided that he only wanted to allow post about alternative treatments. In other words I really don't want to censor anybody.I know that all of us here will be glad to offer any support that you need. As someone who has to battle some severe depression at times I find that some of these off topic posts cheer me up. Maybe I should share with the group more when things seem to get me down.dazzygail <dazzygail@...> wrote: Well I wasnt expectin a debate on illegal's thats for sure. As a newbie here I hope I can get support on the Hep C issue. Thanks to those who welcomed me, that means a alot to me. I am still waiting for my next dr's appt. to see where all this stuff is going. MY good friend Ladonna has been a great helpe to me as well, and encouraged me to find a support group and to talk to others and most of all to listen. ANyway thats all I want to say at the moment. Again thanks for this group. gail

Music Unlimited - Access over 1 million songs.

Try it free.

[Guest guest]

Any time you want to vent, ask questions or cry for

help, we are here. Even if you just want to talk to

someone who has been there.

Sharon

--- dazzygail <dazzygail@...> wrote:

> Well I wasnt expectin a debate on illegal's thats

> for sure. As a

> newbie here I hope I can get support on the Hep C

> issue. Thanks to

> those who welcomed me, that means a alot to me. I

> am still waiting

> for my next dr's appt. to see where all this stuff

> is going. MY good

> friend Ladonna has been a great helpe to me as well,

> and encouraged me

> to find a support group and to talk to others and

> most of all to

> listen.

>

> ANyway thats all I want to say at the moment. Again

> thanks for this

> group.

>

> gail

>

>

>

>

>

__________________________________________________

[Guest guest]

Gail, i truely am sorry for getting upset. I just see

to much of this stuff in here. Its suppose to a

support group. There should be no politics in here.

Just ways to help others deal with there Hep C.

I don't gey angry , i don't even like the word anger,

but to put stuff like that in here was uncalled

for.This hasn't been the first time.

I believe God had a purpose for all of us.He doesn't

judge anyof us. No matter what religion or color or

beliefs.Anyway i am sorry!!!!!

I hope all goes well for you. I went through the

treatments for 8 months and i am in remission. I feel

great and i am on the road to recovery.I have so much

faith that God will see me through this.

I must admit treatment was not easy on me.I always

thought i was so tough, guess i suprised everyone. But

i am back and am just taking good care of myself.

Everyone is different.I will pray for you!!

--- Sharon Zeis <szeis_1@...> wrote:

> Any time you want to vent, ask questions or cry for

> help, we are here. Even if you just want to talk to

> someone who has been there.

> Sharon

>

>

> --- dazzygail <dazzygail@...> wrote:

>

> > Well I wasnt expectin a debate on illegal's thats

> > for sure. As a

> > newbie here I hope I can get support on the Hep C

> > issue. Thanks to

> > those who welcomed me, that means a alot to me. I

> > am still waiting

> > for my next dr's appt. to see where all this stuff

> > is going. MY good

> > friend Ladonna has been a great helpe to me as

> well,

> > and encouraged me

> > to find a support group and to talk to others and

> > most of all to

> > listen.

> >

> > ANyway thats all I want to say at the moment.

> Again

> > thanks for this

> > group.

> >

> > gail

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

,i too have enjoyed some of the off topics, but

to post stuff that is really unessary is uncalled for.

Mexican , wet back as some of you have called or made

jokes about are people too that can and do have Hep C

as well. They too need support. Some are born here and

have family that have been here for generations ,but

still have family over in Mexico.

I could go on ,but i hate politics and its a no win

situation. I don't hate anyone. And there are alot of

things i believe our Goverment is doing wrong, but i

don't go out of my way to hurt people and that

petition wad hateful.We don't know who is in this room

and where they come from.

This room at one time was my lifesaver. And i hope it

will continue to be for many others. Love the jokes

,love the humor ,but i believe its getting off

track.No one has to have my beliefs ,but i am one to

never hold back. Thanks for listening,

--- <ralexanthegreat@...>

wrote:

> Gail

>

> I know that you will find many posts off topic here.

> I like to let anyone post just about anything they

> want because many of us were booted from another

> group in 2001 because most of us were on traditional

> methods of treatment. the owner of that group

> decided that he only wanted to allow post about

> alternative treatments. In other words I really

> don't want to censor anybody.

>

> I know that all of us here will be glad to offer any

> support that you need. As someone who has to battle

> some severe depression at times I find that some of

> these off topic posts cheer me up. Maybe I should

> share with the group more when things seem to get me

> down.

>

>

>

>

>

> dazzygail <dazzygail@...> wrote:

> Well I wasnt expectin a debate on

> illegal's thats for sure. As a

> newbie here I hope I can get support on the Hep C

> issue. Thanks to

> those who welcomed me, that means a alot to me. I

> am still waiting

> for my next dr's appt. to see where all this stuff

> is going. MY good

> friend Ladonna has been a great helpe to me as

> well, and encouraged me

> to find a support group and to talk to others and

> most of all to

> listen.

>

> ANyway thats all I want to say at the moment.

> Again thanks for this

> group.

>

> gail

>

>

>

>

>

>

> ---------------------------------

> Music Unlimited - Access over 1 million

> songs.Try it free.

__________________________________________________

[Guest guest]

We all feel better when we open up to others. But like you, I also seem to keep things bottoles up. Whice keeps us down. Terry <ralexanthegreat@...> wrote: GailI know that you will find many posts off topic here. I like to let anyone post just about anything they want because many of us were booted from another group in 2001 because most of us were on traditional methods of treatment. the owner of that group decided that he only wanted to

allow post about alternative treatments. In other words I really don't want to censor anybody.I know that all of us here will be glad to offer any support that you need. As someone who has to battle some severe depression at times I find that some of these off topic posts cheer me up. Maybe I should share with the group more when things seem to get me down.dazzygail <dazzygail > wrote: Well I wasnt expectin a debate on illegal's thats for sure. As a newbie here I hope I can get support on the Hep C issue. Thanks to those who welcomed me, that means a alot to me. I am still waiting for my next dr's appt. to see where all this stuff is going. MY good friend Ladonna has been a great helpe to me as well, and encouraged me to find a support group and to talk to

others and most of all to listen. ANyway thats all I want to say at the moment. Again thanks for this group.gail Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

Hi Lori,

I love you too. I will tell you though that I stopped doing much with response on the Samters site because I kept asking myself if what I was writing was too emotional, etc. etc. Yes I am sensitive, but have developed a thick skin over the last few years. My point is that even if the guys don't like the sappy stuff, they shouldn't go out on a limb and make the people that have posted sappy stuff feel like what they have to say is unimportant. I'm not personally offended. I have a total understanding of Kens personality on the site. And I've said it before, I like people that are to the point and honest, but please could we skip the words like, babbler, etc. etc. Putting labels on sick and sometimes desperate people isn't very nice. Why not just say, because we put so much time into getting our library ready, we would really appreciate it if you would check that out before joining the group discussions. If that doesn't work, use humor. Honestly, I don't have asthma problems (thank God) and that is talked about endlessly here. If I don't think the topic refers to my situation, I just delete it. No big deal. Let's all just agree to be kind to one another and not reply with snotty posts, myself included. Honestly, I will never post again when I have a really bad desperate day, just because of some of the past posts. I thought this site is for helping us. And the reason I refer to the incensitive posters as male is because that's who puts them out. I'm not being rude, just honest. I'm older and less impressionable, but we have alot of young people on this site that may have not developed their thick skin. It's those people that I'm responding for.

For the record, I do appreciate all the work that's been done on this site. I just have different symptoms than most and would like to ask, who's buying me a drill for christmas. I need it for my frontals. Lol.

Merry Christmas,

Tami

comments

Geez Tam I love you, and I know you're in pain so much, but I didn't see how Ken was being confrontational at all and I don't see why gender had to come into this discussion.Ken and Karl have both taken a lot of time out of their lives to provide resources on this site and others that would help a lot of people if people would take the time to read it and not be spoon-fed information. They have also both moderated the boards, along with myself, for years, and given a lot of hope and help to people. All the times we've tried to get others to contribute to the library no one has stepped up for the most part, and recently I couldn't even get anyone to help compile a list of the aspirin densentization clinics arount the world (which would not be that hard of a task). I understand many are sick, and also tired, but Ken and Karl have suffered from Samter's just as much as any of us and still found the time to give back. So I get a little defensive when people go after them. By the way, Ken is not talking about the posts! He is talking about the extensive library here or files and links and about Karl's web site, both of which are very easy to access and read through the information. People can say what they think here unless it's oersonally abusive, and likewise, Karl and Ken are entitled to their opinions. I don't think I've weighed in on the homeopathy discussion, and I think I will avoid that topic for now. Tami and others, I know it can be hard, but try not to take things so personally. I've taken things personally, and it doesn't help. Ken's post had just as much genuine praise of the group here as it did sarcasm. I doubt Ken meant you personally, Tami, and I don't remember seeing either Ken or Karl attack anyone personally.Let's all take some deep breaths and step back. I hope Karl will not stay away but if he needs a break he is entitled.Lori

[Guest guest]

I think there are many places that offer aspirin

desensitization. My first doctor, an allergist, did

it in his office in Fredericksburg, Virginia. He said

he does about 1 aspirin desensitization a month.

Also, here is a new study for those who live in the

Ohio area:

http://clinicaltrials.gov/ct2/show/NCT00555971?term=asthma+aspirin & rank=2

Michele

--- truelori <lori@...> wrote:

> Geez Tam I love you, and I know you're in pain so

> much, but I didn't

> see how Ken was being confrontational at all and I

> don't see why

> gender had to come into this discussion.

>

> Ken and Karl have both taken a lot of time out of

> their lives to

> provide resources on this site and others that would

> help a lot of

> people if people would take the time to read it and

> not be spoon-fed

> information. They have also both moderated the

> boards, along with

> myself, for years, and given a lot of hope and help

> to people.

>

> All the times we've tried to get others to

> contribute to the library

> no one has stepped up for the most part, and

> recently I couldn't even

> get anyone to help compile a list of the aspirin

> densentization

> clinics arount the world (which would not be that

> hard of a task). I

> understand many are sick, and also tired, but Ken

> and Karl have

> suffered from Samter's just as much as any of us and

> still found the

> time to give back. So I get a little defensive when

> people go after

> them.

>

> By the way, Ken is not talking about the posts! He

> is talking about

> the extensive library here or files and links and

> about Karl's web

> site, both of which are very easy to access and read

> through the

> information.

>

> People can say what they think here unless it's

> oersonally abusive,

> and likewise, Karl and Ken are entitled to their

> opinions. I don't

> think I've weighed in on the homeopathy discussion,

> and I think I

> will avoid that topic for now.

>

> Tami and others, I know it can be hard, but try not

> to take things so

> personally. I've taken things personally, and it

> doesn't help.

> Ken's post had just as much genuine praise of the

> group here as it

> did sarcasm. I doubt Ken meant you personally,

> Tami, and I don't

> remember seeing either Ken or Karl attack anyone

> personally.

>

> Let's all take some deep breaths and step back. I

> hope Karl will not

> stay away but if he needs a break he is entitled.

>

> Lori

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

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[Guest guest]

Dr. Steve Kernerman

Spokane Allergy and Asthma Clinic

Spokane, WA

Does aspirin desense, several a year he

says.

From:

samters [mailto:samters ] On Behalf Of michele

Sent: Thursday, December 20, 2007

11:12 AM

samters

Subject: Re: comments

I think there are many places that offer aspirin

desensitization. My first doctor, an allergist, did

it in his office in Fredericksburg,

Virginia. He said

he does about 1 aspirin desensitization a month.

Also, here is a new study for those who live in the

Ohio area:

http://clinicaltrials.gov/ct2/show/NCT00555971?term=asthma+aspirin & rank=2

Michele

--- truelori <loritruelori>

wrote:

> Geez Tam I love you, and I know you're in pain so

> much, but I didn't

> see how Ken was being confrontational at all and I

> don't see why

> gender had to come into this discussion.

>

> Ken and Karl have both taken a lot of time out of

> their lives to

> provide resources on this site and others that would

> help a lot of

> people if people would take the time to read it and

> not be spoon-fed

> information. They have also both moderated the

> boards, along with

> myself, for years, and given a lot of hope and help

> to people.

>

> All the times we've tried to get others to

> contribute to the library

> no one has stepped up for the most part, and

> recently I couldn't even

> get anyone to help compile a list of the aspirin

> densentization

> clinics arount the world (which would not be that

> hard of a task). I

> understand many are sick, and also tired, but Ken

> and Karl have

> suffered from Samter's just as much as any of us and

> still found the

> time to give back. So I get a little defensive when

> people go after

> them.

>

> By the way, Ken is not talking about the posts! He

> is talking about

> the extensive library here or files and links and

> about Karl's web

> site, both of which are very easy to access and read

> through the

> information.

>

> People can say what they think here unless it's

> oersonally abusive,

> and likewise, Karl and Ken are entitled to their

> opinions. I don't

> think I've weighed in on the homeopathy discussion,

> and I think I

> will avoid that topic for now.

>

> Tami and others, I know it can be hard, but try not

> to take things so

> personally. I've taken things personally, and it

> doesn't help.

> Ken's post had just as much genuine praise of the

> group here as it

> did sarcasm. I doubt Ken meant you personally,

> Tami, and I don't

> remember seeing either Ken or Karl attack anyone

> personally.

>

> Let's all take some deep breaths and step back. I

> hope Karl will not

> stay away but if he needs a break he is entitled.

>

> Lori

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Tami, thanks for your response! The only thing I would say is that Ken

has asked multiple multiple multiple times nicely for people to check

out the library but people do not seem to listen. It is a welcome

message everyone gets when they join the group and it is a file that we

have now set up to get sent out periodically as a message so that

people are reminded of it.

So after a while I think he just gets frustrated, having done so much

work and no one seems to be reading it. It's a very instant, on-demand

society and people always want answers immediately to everything.

I don't want to drag this on endlessly so I am going to leave it at for

now, although I did read and take in the rest of what you said.

Hugs,

Lori

[Guest guest]

Hi Liz, Unless I am mistaken, no one said anything about the emotions

on this site -- this all started because of a comment Karl made about

homeopathy, which to my knowledge has nothing to do with emotions.

He feels homepathy is not scientifically supported and he didn't want

to hear about it anymore. Yes, he could just delete the posts, but

for his own reasons it was just more than he could take, and I think

that's his prerogative.

I don't know what you are talking about about the site serving only

one function. No one said anyone sharing emotions was

inappropriate. Did they? I certainly do not remember this. Maybe I

missed something.

I think people should feel free to express themselves here, again, as

long as it is not abusive to an individual. As a moderator that's

about the only time I am going to censor the site (except in the case

of spam, of course).

Lori

[Guest guest]

Thanksfor the info on the desense programs ..

I am in cancer treatmen for the second time in five years on top of

Samter's and I am trying to find someone to COMPILE A LIST of the

doctors/clinics with names, addresses, phone numbers for the

library.

I am not going to compile this. I don't have time right now. I'm

sorry. So this information will stay on the list here and not go

into any file format for the library unless someone takes this

project on.

There are many places but not SO many and I think providing a list of

this sort would be of great value and would also be a seedling

resource for our future web site (pie in the sky idea as someone once

told me and I'm beginning to think they are right since I can't even

get anyoen to help compile a list). Sorry, feeling a bit frustrated

today.

I do appreciate the info but nothing is going to come of it from

these posts.

Lori

>

> > Geez Tam I love you, and I know you're in pain so

> > much, but I didn't

> > see how Ken was being confrontational at all and I

> > don't see why

> > gender had to come into this discussion.

> >

> > Ken and Karl have both taken a lot of time out of

> > their lives to

> > provide resources on this site and others that would

> > help a lot of

> > people if people would take the time to read it and

> > not be spoon-fed

> > information. They have also both moderated the

> > boards, along with

> > myself, for years, and given a lot of hope and help

> > to people.

> >

> > All the times we've tried to get others to

> > contribute to the library

> > no one has stepped up for the most part, and

> > recently I couldn't even

> > get anyone to help compile a list of the aspirin

> > densentization

> > clinics arount the world (which would not be that

> > hard of a task). I

> > understand many are sick, and also tired, but Ken

> > and Karl have

> > suffered from Samter's just as much as any of us and

> > still found the

> > time to give back. So I get a little defensive when

> > people go after

> > them.

> >

> > By the way, Ken is not talking about the posts! He

> > is talking about

> > the extensive library here or files and links and

> > about Karl's web

> > site, both of which are very easy to access and read

> > through the

> > information.

> >

> > People can say what they think here unless it's

> > oersonally abusive,

> > and likewise, Karl and Ken are entitled to their

> > opinions. I don't

> > think I've weighed in on the homeopathy discussion,

> > and I think I

> > will avoid that topic for now.

> >

> > Tami and others, I know it can be hard, but try not

> > to take things so

> > personally. I've taken things personally, and it

> > doesn't help.

> > Ken's post had just as much genuine praise of the

> > group here as it

> > did sarcasm. I doubt Ken meant you personally,

> > Tami, and I don't

> > remember seeing either Ken or Karl attack anyone

> > personally.

> >

> > Let's all take some deep breaths and step back. I

> > hope Karl will not

> > stay away but if he needs a break he is entitled.

> >

> > Lori

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

> __________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now. http://mobile.

> <http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>

> /;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

Sherry, the jumping around part is so typical of PA and part of what

makes it so hard to diagnose. I think I had undetected fingernail P

since childhood. Then for years my main complaint was one knee. No

one could ever find anything wrong with it. Then for years my knee

was fine and my nails cleared up but I had terrible problems with the

tip joints of my fingers - which they insisted was OA. Then I had

bouts of elbow tendinitis for no reason. Later my main problem was

peeling fingers. Then cracked feet. Then heel and ankle pain.

Finally a dermatologist looked at my feet and realized that was P and sent me

to a rheumy and I got the diagnosis. I guess I should be thankful I

finally developed P that someone recognized! But as you can see,

mine has jumped around constantly. Except for 4 awful bedridden

months when everything hit at one time, with some new additions too.

Hang in there - it WILL get better. regards, sherry z

>

> Thanks to all of you because it helps me understand that many of my

> problems are a part of this disease. I just wonder why it jumps

around

> so much.

[Guest guest]

In a message dated 10/11/2009 11:34:32 A.M. Eastern Daylight Time,

deborahkharper@... writes:

I have had candidia and parasites unknown in humans (dx with DNA stool)

for several years now. I have taken several supplements, been on very low

carb diet and done all the right things, but never get over it. I can knock

it down, but never get rid of it. I have never tried whey, but have tried

inulin in probiotics. It definitely made symptoms worse. I would like to try

both of these, but I am to the point where I can't spend any more money on

things that are not going to work or make me worse. I have already spent

thousands of dollars.

I also have a low T3. Due to the candida I can't take thyroid hormone

either. As most of you know, this is all a very depressing situation.

Thanks for listening.

______________________________________________________

Have you tried adding a small amount of Virgin Coconut oil to

your diet if you are not allergic to it? I tried what I thought was

everything but as soon as I tried adding a small amount of

Virgin Coconut oil to my diet I got immediate relief. Coconut

oil has anti-bacterial properties and is known to kill Candida.

By small amounts I mean take perhaps a teaspoon a day or

maybe a tablespoon a day.

Nowadays I seem to get along well with Olive Oil but I still

take a little coconut oil if I notice any Candida symptoms

starting to come back.

Also another thing that has worked very well for me is

taking Del-Immune V and Delpro supplements.

Todd R