Kathleen

April 1, 2000

Kathleen, the only miscarriages I have had would be spontaneous where I

did not even know I was pg.

I use a high potency pro cream from ovulation until menses.

Also, I also take different herbs and infusions throughout my cycle.

Doing this with the diet has helped a lot. Pam.

March 26, 2002

Hi Dee,

This is so weird because it is nothing like the piece I read in our paper. I

didn't keep the paper but I am going to see if I can track down the issue.

The article I read claimed that Ms. did not find relief until she started

the biologics. It even named Remicade, Arava and Embrel saying that she would

not say what specific drug she was on because she did not want to come off as

endorsing one over the other. It is bothering me because I don't want to try to

quote using my brain fogged head but it really implied that all of this stuff

was

very safe. We all know that the jury is still out on this and it is rather

irresponsible to infer otherwise.

I haven't had luck tracking the article you mentioned. Some people gave the URL

but every time I tried it it failed.

Strange!

Lee-Anne

P.S.

I like your version better. What we need is a J Fox or something.

Wayne

Gretzky slippin' a few extra strength tylenol isn't going to cut it.

LJDSLL@... wrote:

> Hi Everyone,

>

> I just read the article from USA Today about Kathleen and you'll never

> guess who her doctor is....Dr. Trentham. And the drugs she takes

> are.........Minocycline and Celebrex. Maybe this therapy will finally get

> the attention it deserves!!!! It's a shame that it takes someone famous to

> draw attention to AP but hey, whatever it takes.

>

> Dee

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

March 27, 2002

Grp;

My newspaper says that Kathleen is working with Immunex and has a webpage which I think is their web page- My guess is that she is on minocin at the same time she is taking enbrel.

Carol*

November 6, 2003

Dear Kathleen,

I'm sooooo sorry for all that you have been and are still going through.

I live in Indiana, but I care deeply about what is happening to you. I have a

very hard time reading and understanding what is going on and what I can do for

you.

I understand enough to know somebody is messing with you and your kids for

taking a stand and it just chaps my butt to no end, as I have Lyme and so do

both of my children.

We are barely getting by one day at a time. My child is on a 504 that I had to

fight tooth and nail for two weeks ago. I'm having to file bankrupcy AGAIN,

which means I'm losing my traveling truck, just to get rid of the payment. I

just can't afford the payments while on disability.

I dare say most of the lyme is up to their necks in some kind of controversy or

sick as a dog most of the time too.

I would have loved to have gathered all the Lyme people I know and brought them

there to fight for you. But I don't have the finances to travel across country,

paying for hotels and meals all the way.

If I had more time to prepare for a journey of that magnitude I would still

" try " to be there for you. This all just came on us too fast to deal with it

this time!

I know you are disappointed and feel let down, but please don't be angry at us

for not being there in person. We wrote two letters, as that was all we could do

long distance.

I wish I could think better and come up with a productive plan! Anything to help

protect you and your children from these obviously crooked so-called

professionals in the court system. But, I don't know what else to do for you!

I don't want to forget what just happened to you. And I don't want to drop this

because you are in the clear for a couple of months. Please help us to organize

and " prepare " for your December court date NOW!

Two months is not a lot of time in Lyme time. So, PLEASE, help us to help you!!

Be specific!! What kind of public display would be beneficial in December?

We have BAD winters here, and driving that far in my " new " 1976 beater would be

extremely dangerous.

Don't think for a minute that we don't care! I'm not afraid or unconcerned, I'm

just lost!!

God bless you! I hope I understood right, and you got your kids back. Thank you

for being willing to fight the system on the lyme community's behalf.

You are in our prayers always.

Carol aka dizz

HMO's and Supreme Court

>

> Rita, did you pass this on to the rest of the group members

trying to help Kathleen? What is happening with the group. I've heard

nothing.

> Spent the day in bed, but checking emails and posts from time to

time.

> Question: I'm a little lame brained today, can you tell me what

you meant by that post re: the feds and Kathleen's case? Thanks.

> Jen

November 6, 2003

We, definitely, need more people to help Kathleen and other Lyme mothers who are

being harrased by ignorant, arrogant govt officials. To join this small group

send an email to lisam01502@... Thank you. Rita

Re: [ ] Kathleen

And why did we not help this woman? And what did Pat do to screw us all

up again? And, what can be done now to help Kathleen and her children? I am

now just hearing about this and do not completely understand what the heck is

going on. But, it sounds like a cry for unity and support. Has anything been

done to get something together to help her?

November 7, 2003

If anyone scrolls down through this chain of messages and sees

something I wrote about Kathleen and -- it is not at all true.

I must have pulled that idea out of thin air. My apologies to all.

I'm only addressing this to dismiss it. This is how rumors get started.

Blessings,

> >

> > Kathleen

> > ===========================

> > Subject:

> > MEETING ASAP

> > Date:

> > Mon, 03 Nov 2003 21:36:45 -0500

> > From:

> > Sloane <j.sloane@v...>

> > To:

> > Marie <atthelake@s...>

> > CC:

> > kathleen.dickson@s...

> > References:

> > 1 , 2 , 3 , 4 , 5

> >

> > but got the feeling from God knows where that things weren't good

> between Kathleen and her.

> >

December 17, 2004

Hi and all,

I am a different Kathleen from the one who suggested the neck brace

and I haven't been here in probably a month, so I am just catching up

on the posts. Fascinating reading and amazing to hear the stories.

I'll recap mine and address the collar and the tendancies of Dr's to

not take aggressive action to dx a patient:

I had had 3 bad auto accidents, 2 involving major soft tissue whiplash

type injuries and was treated for both. These were 33 and 15 years ago

and I was never dx with herniation at those times, just tx for muscle

issues with PT, stretching, massage, hot packs and I had a cervical

collar for the first one but not the second. Fastforward to 2004 and

over the years I've had lots of stiff necks and cramps under the

shoulder blades and along the top of collarbone. I've also had ongoing

triggerpoints all over the upper body and while I know they could be

fibromyalgia, never pursued that dx as I realize there is not much to

be done outside of drugs. I've had a relatively painfree existance

(outside the neck/shoulder aches which were unpleasant but did not

require meds, just major stretching, heat, whirlpool).

Then in Sept 2004 I awoke with a neck ache just like a regular one

(for me). I made the mistake of sleeping with the window open for the

first night of cool air (I'm in the desert) and thought that is what

caused the neck " cramp " . I am a digital photographer so spend lots of

time on the computer running my biz and doing the photo work - by the

end of the day, I had to quit my work (not usual for me as I am a

workaholic) due to the increasing pain. I decided as it got worse and

worse that I would have to cancel my planned work trip for the next

day as there was no way I could drive 125 miles in that pain nor work

all day for 2 days straight. Finally I drank some alcohol so I could

sleep. Awoke with the same level of pain the next day and it worsened

even more. By the 3rd day it was so bad with my entire tricep feeling

like it was a foreign body intent upon eating me up from the burning

pain it was causing. And yes, exposure to any temp below body temp was

making the cramping worse so I was on the heating pad and wrapped up

like a mummy during this time

I ended up in ER thinking that maybe it was a heart attack with the

arm pain and by that time it was down my left shoulder, around the

side and under the left breast. The pain was so severe, I had

involuntary quivering/fluttering in the surface muscles on lower

ribcage on that side. I had to ASK for an ekg - it was fine and I was

sent home with dx of wry neck and rx for percoset and valium and told

to take NSAID Aleve too. Well they did relieve my pain but of course

they make you pretty useless just like if you drink too many drinks.

By this time I was spending most of my time propped up on the couch

with the laptop settled on pillows on top of me so I could at least

try to research this.

I went for follow up with the physical medicine specialist I was

referred to at Mayo clinic, thinking this is one of the best hospitals

in the world, great place for me. After interviewing me on history and

doing an exam of my reflexes and strength, he said I probably just

needed some PT as there was no nerve involvement (this was one week

after I awoke with the neck ache) or weakness and to continue the meds

rx'd by the ER. So in our further discussion I reiterated my bad

accidents and how I thought it would be a good idea to get some

testing done now that I am 50 to make sure we knew what was going on

in there after all these years. He agreed that would be prudent and

asked if wanted xray or also mri. I said both and so with the mri we

found a broad based herniation at C6-7 on the left, nerve compression

not identified.

Well golly gee, if I had not pushed for that test, I would not know!

When he delivered the news, he said Do not lift over 5 lbs and you

must be very careful now. Get the PT I ordered for 4-6 weeks and see

me if it doesn't help. No advice on how long for this restriction. We

did discuss other options that might be needed in future including the

steriod injections and fusion surgery (I have a good understanding as

both my mom and niece have had this done for lumbar region).

So I went to the PT for a month which included some manual traction,

babied myself, gave up working and agonized over how I am going to

continue my career lugging heavy gear (my camera weighs 6 lbs alone).

My pain has gone for the most part but I still have some residual

muscle tightness and cramping not unlike what I've always had. Nothing

that requires meds, not even Aleve. But I am listening to my body and

I stop work when I feel anything and go lie back to rest my neck. I

have this luxury being self employed but it's frustrating all the

same, to see that your intentions and your ability to propel your

business have to be held back by a failing body. I suppose that is

part of getting old....

I think the scariest part is knowing now about the time bomb in my

neck and I am trying to figure out how to live my life " safely " but

there doesn't seem to be any real roadmap for this. That is the most

frustrating part especially when I understand what the future could

hold, all that pain and more which so many of you are still suffering

and describe here, not to mention surgeries and the rest. Very scary

and very upsetting to have it seems no where to turn to learn how to

avoid as much of this as possible. I realize I may still end up with

the worst of it but it would seem prudent to do all I can to avoid it

by making changes to how I live right now although there is apparently

no place to go to find out what those changes should be. I've spent a

lot of time trying to reseach this accomodation aspects and in redoing

all my gear so most of the pouches and pieces are about 5 lbs and I

just make multiple trips. I also am blessed with a husband who is

taking on all the lifting and straining type of stuff like sweeping,

vacuuming but it is frustrating to think I " can't " do that stuff

because of this time bomb. Makes me feel a bit useless....and then

there is the work with the horses (just on the ground, not riding) and

the gardening which I have given up out of fear of injuring myself

further...

It is interesting that so many of you here are talking about a

cervical collar. At Thanksgiving, a distant family member left the

room after hearing my story for the first time and came back in with a

cervical collar retrieved from her car. She has had a couple really

bad car accidents too and her Dr told her several years ago to get a

collar and wear it when driving and it supports the head and will help

her avoid pain on long drives. She hasn't had any spinal disease

injury dx that I know of, this was anectdotal advice I think. She told

me you could buy them at any good drugstore so maybe that will help

some of you. I haven't gotten one yet but I did buy one of the pillows

filled with beads at Walgreens. It's shaped like a U so it fits around

the neck. I intended on using it in the car but it only works well in

our truck so it's mostly on the couch and does help with all the

propping I try to do. I also think that having a collar for use at the

computer would be a good thing.

I also just met a chiropractor at the local pharmacy - she was doing

free 12 minute upper back massages to intro people to her work and we

talked a lot of my issues. She said to make sure the computer monitor

was placed so that your eyes were pointing at a line about 1/3 from

the bottom of the screen. I knew about the ergonomics of the keyboard

tray and other issues more for the low back but this screen placement

was something new. She said if you have to let the head fall forward

at all, it puts tremendous stress on the cervical spine due to the

weight of the head. So it makes sense to keep completely upright or

even slightly leaning back to counteract gravity (forward/down force)

and to get relief by lying back and getting complete support of the

head. That also means the collar could be helpful especially for long

periods of time like the driving scenario.

For future, I am looking for a hot tub for the whirpool benefits it

can give and I also am thinking of wearing the collar some too. I had

one for 4 months of that at age 17 and it was horrid with other kids

teasing but I am sure it would support and help with pain.

Thank you to everyone here who is sharing their stories. I learn a bit

from so many of you and I hope something I wrote helps someone too.

Wishing you all a better day and some relief from your pain and

worries. These health problems suck.....and none of us deserves them

one little bit!

Best,

Kathleen

On Thu, 09 Dec 2004 20:33:45 -0000, <slotime2000@...> wrote:

>

> Hey Kathleen,

>

> I was wondering if you are suggesting to wear a neck brace even in

> less extreme cases. I'm wondering for myself because I am

> experiencing chronic moderate-to-painful pain in the cervical area.

> I'd like to wear one for sitting at this computer alone.

>

December 17, 2004