Intro

[Guest guest]

Dani, have her read some of our comments, my daughter asked her father if he

thought i was imaging everything! but... he's been here and actually watched

me go thru a lot and told her it was real mog

[Guest guest]

<snip>

> Also, I brought this up to my family and they think I am psycho. I

> have a teenage brother who has horrible allergies and has been on

> medication for OCD since he was 12. I told my mother what I have

been

> reading because hhe was always on amoxicillin as a toddler and she

> told me I am suffering from " Sophomore Syndrome " and need to " get a

> grip " and got angry at me for trying to " use my brother as a guinea

> pig " .

> I am just feeling very overwhelmed. Anyone else been there?

> Dani

I offer you a quote that hit home for me:

" A truth's initial commotion is directly proportional to how deeply

the lie was believed. It wasn't the world being round that agitated

people, but that the world wasn't flat. When a well-packaged web of

lies has been sold to the masses over generations, the truth will seem

utterly preposterous and its speaker a raving lunatic. "

-- Dresden

You are ultimately responsible for your own health, and that of your

children. It has become increasingly clear that doctors and " health

care " (I use the term " care " loosely) corporations are far more

interested in status and $$$ than in maintaining or improving people's

health.

If your relatives enjoy being spoon-fed the prevailing medical B.S.,

that's *their* problem! ;^>

~~~~~

~~

~~~~~

Annoy a politician today -- THINK!!

http://www.giftedlyoutspoken.com

[Guest guest]

Be sure to get tested for the other known tick borne diseases such as Babesia

and Erlichia. Some of your symptoms sound like " not just Lyme " .

Martha A.

[Guest guest]

Most Lyme people test normal on MRI, but some test abnormal. A spect

test could be used to prove CNS infection without spinal tap. The

SPECT MUSt be done at Columbia in NYC. Most other places dont know

what to look for and say its normal. This point is very important.I

made this mistake first. A negative spinal tap does not in any way

mean you dont have CNS infection. The germs are great at hiding.

Your having memory and thinking problrms. If you do have lyme, is

that not enough to convince you of CNS infection?

Research the benefits of a spinal tap carefully before getting one.

If you do, test the fluid for all co-infections, if poosible.

Also, get tested for all known co-infections if you have been bitten

by a tick. Bartonella, for instance can be just as serious with

similar symptons even if you do not have Lyme!

world

>m/weaving

[Guest guest]

Hi Joy,

I can give you some anecdotal evidence from my experience, and mention which

specific venues I've tried. Write me off line so I don't sound like broken

record to the group as I've posted about that in the past.

Dave N

ixode@...

[ ] Intro

Hi, I put this up on the lymenet, but thought it would work just as well

here...

I'm sure you all know how confusing and scary this can feel. It's not the

first time I've had the symptoms of this disease, who knows I may have

gotten it all over again, this " California " variety, because I was on doxy

for 6 months after getting bit on the East Coast, but who knows maybe it's

a co-infection or a new one. I should know a little bit more where I'm

going after my appointment with my ID (that's the term of Infectious

Disease specialist, right?) today. When I got it two years ago he was smart

enough to treat me symptomatically even though I came up negative on the

WB. So I'm hoping this time he will agree to do the Lymes 875 test through

Igenex. I already have the form and talked to Dr. there and he said

this urine test is the first most accurate testing procedure they have

right now and is the least traumatic to the body.

I haven't been completely clueless about this disease or what it can do,

I'm just really surprised that I am apparently having symptoms again. I've

got all the " fibromyalgia - CFS " symptoms I had before, but am also having

weird nervous (wandering) ticks, and having a very strange feeling like

someone has an electrical probe on my spine... constant vibrations.

Somedays, of course much worse than others. Currently I have soreness and

pains all over the body that keep wandering around, AS I TYPE!, and extreme

tiredness. I think it's actually affecting my mood this time. I've never

been prone to depression, but I have been prone to panic attacks before I

know I got bit, and the got much worse after this renewal of lymes

symptoms, so I'm wondering if the lymes might be exacerbating this or if

I'm just freaking out and doing it to myself. Hard to tell, ya know? Right

now I have a nerve (I think) twitching in my left forearm, it feels like

someone plucking a guitar string... really weird. Of course I'm having the

brain fog and short term memory issues, can't remember words all the time,

or even if I do, they don't come out right. I guess those suckers crossed

the brain barrier. Now I get so tired that I wonder if I'll ever be over

this disease when I'm like that, and that is about as close to depression

that I've ever gotten.

My GP, though not Lymes Literate is at least willing to have an open mind

about this. She admits she really doesn't know much about this disease and

she is willing to refer me to a LL specialist if I don't have luck with my

ID. I prefer a doctor with this kind of attitude. I can't really expect

every GP to understand lymes but I do appreciate her willingness to

listen... and I'll be honest I laid out a few ground rules with her

first... I told her that I'm rather certain this is what I have, that I'm

researching on it diligently, that I've been bitten by a tick (and pulled

it off) and that I'm not afraid to ask rather hard questions that she might

not be able to answer. And that I don't expect her to know everything, but

I do expect her willingness to help me uncover what is going on with my

body. I don't think she's a duck. (The Urgent Care doctor on the other

hand, may indeed qualify!)

We tested me for MS and Lupus, both negative. We also tested for a Vitamin

B deficiency. I was happy to test for those because I certainly wanted to

rule at least the first two out, that's definite. I knew they would be

negative anyway, I think our bodies have an innate intelligence and will

tell us when we are right about something.

I was sorta hoping it was a vitamin deficiency, though I didn't expect it

to be, because that sounds like something rather easy to fix, no such luck

though.

She wants me to see a neurologist, and I will, but I don't really think the

neurologist is going to be much help. But it's ok with me if insurance

covers it to rule out certain things as LONG as she doesn't insist on a

spinal tap first thing. If she does that, I'm getting up and walking. A

spinal tap test for lymes is one of the tests, but should be a last resort

way to detect it.

Dr. at Igenex said that instead of the MRI which my GP suggested

that I might want to have a SPECT test instead. Sounds pretty high tech...

not even sure if our local hospital has that kind of test. They might have

to send me to Stanford for that.

Other than that, in my personal life, other than this most personal of

issues, I am married, raising alpacas, I'm a weaver, a spinner, a

beadworker, a gardener, a gourmet cook, a seamstress. This illness is

impeding on my energy level to be able to do everything I want to do so I'm

bound and determined to get it under control so it stops undermining my

ability to be creative. I think that's the cruelest blow of all with this

thing, so far. Weaving can be pretty physical, and I just haven't had the

energy to do it or to spin, because the damn thing effects the energy on my

legs.

In general I'm suspicious of Western medicine as it currently stands

because of the experiences of so many that I've gotten to know (including

my Mom) and their doctor's unwillingness to approach things in a

nutritiousness, and wholistic manner. I'm more than just my body and if I'm

ill, then it's not *just* my body, ya know?

On the other hand, I'm not just going to try any alternative out there,

unless it has some very positive anecdotal and hopefully proven medical

benefit. That's while I'll happily take antibiotics again if I get put on

them! (And I'd better!)

This isn't my normal typing voice, I'm normally a little more cheerful and

less cynical, but ya know how it is....

Joy

Misty Mountain Alpacas & Fiber

s Valley, CA 95066

http://www.mistymountainalpacas.com

Joy's Weaving

http://www.dancinghummingbird.com/weaving

[Guest guest]

Hi ,

Welcome to the group,you will find it very useful and gain lots of great info and support.It does sound like some sort of arthritis,and your right Sjorns(sp)syndrome does fall under the arthritis umbrella.It kills me that the kids have to wait so long to see a ped rheumy,keep in touch and let us know how things go.If your daughter continues to get worse over the next month,you pester that rheumy and try to get her in sooner,do what ever it takes,best of luck!

Becki and 4systemicJRA

[Guest guest]

Welcome . I've been on this for list for a couple of months now, was diagnosed two years ago, got HCV in 1989. My counts haven't been exceedingly high, altho they sometimes jump, so I've not yet had a biopsy or treatment. But I sure am priming myself with all the valuable info I've learned here!

[ ] Intro

Just wanted to say hello and introduce myself .. Im 26.5 married and I live in San Diego California.. My mom has been diagnosed with Hep C and will be starting her treatments on Tuesday.. I joined this group so I could meet others who have gone through this and get some sort of support and advice.. I appreciate all feedback.. I just dont know how to feel ... I try not to think about it but that doesnt help the situation go away.. .. I look forward to meeting everyone and hearing your stories

*:-.,_,.-:*'*:-.,_,.-:*'

::Base & Background By Azpen::

---My Mail is Bug Free is Yours?Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.384 / Virus Database: 216 - Release Date: 08/21/2002

[Guest guest]

Someone told me to get chlorophyl at the nutrition center and give it to Greg

along with milk

thistle even if he does end up on treatment. is this a good thing to do or not?

thanks.

sue and guide dog gidget, WA state

[Guest guest]

Hi, Ray. greg doesn't even get the option of a liver transplant. with Group

Health insurance,

age fifty is the cut off age, and he will be fifty one in Feb. and it costs $150

thousand. No way

we have that. I hope he's not going to be allergic to the treatment. never

thought of that.

I hope greg's reacts well to the treatment. i hope there isn't so much liver

damage that the

meds don't work. i guess anything is possible.

good luck to everyone for any decisions they make about their owb bodies.

Sue and gidget, WA state

[Guest guest]

Is Peginteron treatment the same as getting interferon and ribaviron or is it

different? Does the

amount of liver damage make a difference as to whether or not the treatment will

work? why is

some treatment 24 weeks and some 48 weeks? thanks for any answers on or off

list.

Sue and Gidget, WA state

angelsusanne@...

[Guest guest]

Hi, Terry and everyone. Greg's doc told him he will get a shot a week and pills

every day. I

sure hope he will be able to work. he is a laborer, a rigger at a shipyard, and

it's hard work. he

has been there 23 years.

I am fixing up our guestroom so if I get a cold or something, i will sleep in

there to not give

whatever to Greg as i am pretty sure his immune system will be compromised with

this

upcoming treatment. i hope he doesn't have to work weekends because then he

drives alone

and it's a long drive to and from work. During the week, he rides in a van pool

and can nap.

Why do you take two pills in the am and three in the pm? Is there a reason you

don't take

them all at one time and what makes you tired, the shot or the pills, or do you

know for sure?

Thanks for answering my questions. And Dec. 13 will be a happy day foryou, i am

sure. how

far along in the treatment were you when they could tell it was working for you?

sue and gidget, WA state

[Guest guest]

Hi again. well, a transplant is out of the question because, as i said, Group

Health will not

consider one after age fifty, and I don't have 150 thousand dollars. We can just

hope

everything works out. I am printing up the email about pegasys and giving it to

Greg so he

knows there's another option to ask his doctor about. i wonder if it works

better with less side

effects than the interferon/ribaviron?

Sue and gidget, WA state

[Guest guest]

Thanks for the info. Greg apparently has lots of liver damage, thus the

ultrasound in Jan. Had

that biopsy and ct scan and many bloodtests, including today, that's where he is

right now.

Sue and gidget, WA state

[Guest guest]

When Greg asked about genotypes and viral loads, the doc just brushed it off

saying it doesn't

matter'; what matters is he has the disease and should take the cure. I will ask

when i see the

doc. I tend to ask more questions than Greg does, and when i ask, i expect a

logical informed

answer, smile.

Sue and gidget, WA state

[Guest guest]

Sounds like your doctor needs an attitude adjustment, or maybe you

need a doctor who will answer your questions and take your concerns

into consideration!

> When Greg asked about genotypes and viral loads, the doc just

brushed it off saying it doesn't

> matter'; what matters is he has the disease and should take the

cure. I will ask when i see the

> doc. I tend to ask more questions than Greg does, and when i ask, i

expect a logical informed

> answer, smile.

> Sue and gidget, WA state

[Guest guest]

i like the fact that the doctor is running tests and maybe he just felt he'd

rather talk to us in

person, I don't know yet. i will find out Tuesday.

Sue and gidget, WA state

[Guest guest]

I will let you know how it goes for Greg.i do know he is now very withdrawn and

depressed for

the first time in the 26.5 years we have been married. He is usually the most

outgoinghappy

person i have ever known. that is gone now.

Sue and gidget, WA state

[Guest guest]

> and the ever-wonderful discogram <

Do those hurt? I am fearing that we will be doing one in the near future as all

the epidural and caudal injections are not working beyond a couple days relief.

Doc is now attempting to get insurance approval for a facet joint injection.

At what point do they give up on the injections and move on to something else?

What is next?

I just wish this was a bad dream that I will soon wake up from.

****** Vicki Harkness ******

Paramedic...20 year career lost

Owner of: Sweet Dreams K9 and Casual Photography

[Guest guest]

> and the ever-wonderful discogram <

> Do those hurt?>>>

Vicki-

Am so sorry to hear that you lost your business over your back

problems. I can relate. I lost my retail website in May because of

DDD....I was making custom tees, and I just could not press the

transfers on the shirts anymore. I am now designing and maintaining

websites for others. Let me know if you need my help should you find

something for which a website could be useful. I am extremely

reasonable- if it is not too involved of a site, I will do a simple

site for you for free if you need it.

The discogram. No two ways about it, they hurt. But it was not as bad

as I thought. A little worse than a mylogram. Cry if you want to and

do not hesitate to tell the doctor you are scared...I was blessed

that I got a very nice doctor and tech that got me through it. The

tech even held my hand. The good news is they found a bad disc that

the mylo and the CT had not even detected. It is worth the pain, go

through with it, and do not try to be brave. If you are scared, tell

them. And take your painkillers with you and take them the minute the

disco is over.

Take care. God bless you as we walk throgh hell. I am seven weeks

post op and doing well. The pain of the diagnostic tests are worth it.

{{{{{{{{{{Texas-sized hug....a gentle one because of the back}}}

www.Crawford.com

[Guest guest]

< Am so sorry to hear that you lost your business over your back problems.

The discogram. No two ways about it, they hurt...A little worse than a mylogram.

>

I lost my 20 year paramedic career...and am in the process of starting two new

businesses. Business that I can hopefully work around my back problems. Thanks

for the web site offer. My hubby and I are looking into that now.

And I may be confused between the discogram and the mylogram...which one is when

they shoot the contrast dye into the spine and do x-rays to better see the

damage? That is the one I think my doc is considering since I cannot have an MRI

(pacemaker). Is it anything like a caudal injection?

I am at the point that I am being forced to accept that the life I have

previously known is over and I must adapt to my new life. the past several

months I am waking up about every hour because of pain, and my current pain meds

are no longer working. I am having to cancel social events because I am just to

tired to leave the house. The pain is still not terrible as I am still able to

walk and everything, but does drag me down with its relentless ache. My hubby is

going to my next doc appt to demand that they lose the " let's try this " attitude

and actually do something.

I just don't care any more.

[Guest guest]

Wanda-

Whew! And I thought my first mylo was bad! Bless your heart! I do not

blame you for not ever wanting another one. Fortunately, I was able

to learn a little about the procedure from a doctor. On my first

mylo, when they put the contrast in it hurt so bad. But then when

them tilted the table to get the dye to the herniation in my neck, it

was so 9painful I saw stars. The doctor merely apologized and walked

out of the room. Why patients cannot be knocked out for a mylo I will

NEVER know.

Anyhow, two years later another doctor ordered a mylo for my lumbar

spine. I was petrified....so scared my systolic blood pressure was

almost two hundred and the nurse was afraid I was going to code. They

told me, and now I know that it is true, that THE WHOLE SECRET TO

SHEER TORTURE AND JUST DISCOMFORT WHEN IT COMES TO MYLOS IS HOW FAST

THE DYE GOES IN. Marquis deSade at the other hospital just used a big

old fat needle and pushed the dye in in about twenty seconds. The

second doctor used a needle and a tube designed for tiny babies and

put the dye in over the course of several minutes. WHAT A DIFFERENCE!

The doctor flat out told me that some doctors use big needles just

because it is faster and they can get on to the next patient. INSIST

on small needles and tubes for the dye and it will not be NEARLY as

bad. The place I go has a very comfy recovery area and take really

good care of you...that is where I got the second mylo.The first was

done in a hospital that just did not give a flying flip about patient

comfort.

Hope this helps.

Hugs,

[Guest guest]

I would like any information on how to do websiting on the internet

or anykind of business for any business. I am not to computer

literate but yet I am in some things and am very willing to learn to

earn some extra money. No income since 2001. Love Chris

> > and the ever-wonderful discogram <

>

> > Do those hurt?>>>

>

> Vicki-

> Am so sorry to hear that you lost your business over your back

> problems. I can relate. I lost my retail website in May because of

> DDD....I was making custom tees, and I just could not press the

> transfers on the shirts anymore. I am now designing and maintaining

> websites for others. Let me know if you need my help should you

find

> something for which a website could be useful. I am extremely

> reasonable- if it is not too involved of a site, I will do a simple

> site for you for free if you need it.

>

> The discogram. No two ways about it, they hurt. But it was not as

bad

> as I thought. A little worse than a mylogram. Cry if you want to

and

> do not hesitate to tell the doctor you are scared...I was blessed

> that I got a very nice doctor and tech that got me through it. The

> tech even held my hand. The good news is they found a bad disc that

> the mylo and the CT had not even detected. It is worth the pain, go

> through with it, and do not try to be brave. If you are scared,

tell

> them. And take your painkillers with you and take them the minute

the

> disco is over.

>

> Take care. God bless you as we walk throgh hell. I am seven weeks

> post op and doing well. The pain of the diagnostic tests are worth

it.

>

> {{{{{{{{{{Texas-sized hug....a gentle one because of the back}}}

>

> www.Crawford.com

[Guest guest]

In a message dated 10/25/02 11:48:22 PM, heartandseoul@... writes:

<< Never thought I

would be a practically an invalid at 43....can anyone relate? >>

Hi :

It sucks, I know. Will probably be having lumbar surgery early next year. Am

hoping to have Artificial disc (still in clinical trials) surgery (instead of

spinal fusion). Went misdiagnosed for nearly 10 years (and that includes

oodles of MRI's, CAT scans, Bone scans, Spinal Taps, and the ever popular and

always fun Disco gram). Have severly torn disc and bone spur at L4/L5 (now

it's shredded). Had IDET surgery 1 year ago. Unfortunately did not work. I

too am 43, but unlike like you have not yet met my Mr. Almost Right (LOL) or

had the privilege of having wonderful children. This damn thing has stolen 10

years of my life. Looking forward to regaining my life. Welcome to the group.

Feel better soon.

Robin

[Guest guest]

In a message dated 10/26/02 9:55:41 AM, casualphoto@... writes:

<< and the ever-wonderful discogram <

Do those hurt? >>

Vicki:

Disco grams are given to determine if you need surgery and are given,

traditionally as the last resort. They are given under fluoroscope (hi tech x

ray thingy). The object is to reproduce your back pain. The injection itself

is not particularly painful (any more so than other injections). The pain it

brings on isn't the most fun in the world (think of yourself when you are

flared up). I've had two and lived to tell about it LOL. Truthfully, both put

me in " flare up " mode for about a week and a half. Everyone's experience is

different. But don't jump off the bridge until you come to it. Take care.

Robin

[Guest guest]

In a message dated 10/26/02 1:39:42 PM, casualphoto@... writes:

<< And I may be confused between the discogram and the mylogram...which one

is when they shoot the contrast dye into the spine and do x-rays to better

see the damage >>

Well a little of both. Myelogram is a Spinal tap (which I hated too) where

the doctor removes the spinal fluid, injects dye and takes xrays. Discogram,

I believe, is what you're describing. I've had one spinal tap and two

discograms.

Discograms suck. They are done to re-create your pain (and to better pin

point the damage to the disc) under fluroscope (hi tech x-ray). Discograms

(in my experience) aren't any more painful an injection than the others (as

far as injections go). The doctor, typically, does give Verced (sedation) to

make the procedure a bit more tolerable. However, since the object is to

recreate your pain, think of your worst " flare up " mode and that's usually

what happens to you after a discogram. The doctor uses a needle and places it

into the " suspicious " disc or discs and asks you (the patient) if your pain

is being recreated. It hurts like hell. (HELP, GREG. IF YOU " RE READING THIS I

KNOW YOU CAN DO A MUCH BETTER JOB EXPLAINING THIS THAN I CAN LOL). For me

that pain typically has lasted 1-2 weeks after the test.

It's not the most fun I've ever had, but this can be (note I said can be

because if you have an idiot doctor performing this test as I did for my

first discogram he can screw up the findings) a terrific diagnostic test. The

discogram is the last (for obvious reasons) test given to determine if

surgery is needed. During my last Discogram (7/02) the doctor correctly found

that my disc at L4/L5 was severly torn/shredded. Idiot doctor who did

Discogram 8/98, somehow missed that. Guess he must have used the Verced on

himself (cuz he didn't sedate me). Hope that kinda explains it. We have

roomies in this support group (HELLO GREG OR JAN????) who, I'm sure, can

explain it much better. But I hope that gives you a bit of an idea. Hope I

didn't scare the sh**t out of anyone.

Robin