question

[Guest guest]

Dear Tammie, Long b4 i was diagnosed, I suspected something was wrong....I

always felt like I was fighting something off..so I would take ibuprofen, get

some extra rest and keep going. I had back problems 9which there seemed to

have been a real increase in back pain) and also some joint stuff. I had

been treated for tenosynovitis several times on both hands and froearms.

Then my periods started to whack out. I had a bunch of tests done and stuff

came back only slightly askew, but enough that I thought I had some kind of

auto-immune syndrome going on. My gyno reassured me that she didn't believe

that was the case...then I started breaking out with lots of black & blues.

Because I was on an atidepressant and had HepB in 1970., my therapist

suggested I get my liver enzymes checked to make sure the anti-d wasn't

affecting it in any way. It was then that my internist asked if I had ever

been checked for HCV. I had never heard of it before. Needless to say, it

came back positive but before I could figure out what that meant, I had a

gall bladder attack and found out I had stones and a badly diseased gall

bladder. It was during this surgery that I had them do a liver biopsy. My

biopsy was mis-read and Ithe report said nothing was wronng...again I thought

I had dodged a bullet of some sort. I never really got better after my

surgery. I felt lousy. I was dizzy, super-fatigued, my joints were bothering

me, I was nauseas, my skinn hurt.....all very weird. Finally some time after

my gall bladder surgery, I had the rest of the blood work done for HCV,

including a PCR. It showed a significant viral load. In fact, it was the

highest one this gastro had ever seen. He suggested I go on Interferon

immediately. I contacted another gastro for a 2nd opinion. This time my

liver Bx was sent to Yale to be read...a totally different story.

Still...HCV was a mystery disease 5 yrs ago. This doc thought I was

depressed, it was all in my head, after all HCV was a little known weird

disease with no symptoms. That's how they thought 5 yrs. ago. Finally after

a couple of yrs, I found out I also had mixed cryoglobulinemia (Type III),

peripheral neuropathy, chronic inflammatory disease process in joints and

Fibromyalgia. I also was diagnosed with chronic iron defiency and trigemenal

neuralgia. I also showed a positive rheumatoid factor and may be treated for

that once I complete the Hep meds. All this being said, I have met 1 person

who had/has absolutely NO symptoms.......so........I think HCV symptoms can

be quite individual and also when folks have symptoms, they are pretty

similar. Mostly i just didn't 'feel right' alot of the time before my

diagnosis...but tried to ignore it. You may be one of the lucky people that

don't have symptoms.....you may not. Noone can forsee that....but try not to

by into the 'it's all in your head' routine either. God Bless, gee

[Guest guest]

In a message dated 6/15/2001 8:39:56 PM Eastern Daylight Time,

tammster62@... writes:

> I am trying very hard not to have symptoms after I read about them

> LOL. As far as I know, I don't have any. Fatigue may be one, but on

> the other hand it could be that I am too fluffy and lazy LOL. The

> question is: what are the symptoms of this before you start

> treatment? I have read several things and I think that I have a grasp

> on this one, but I would like to hear what ya'll have to say.

> I am not depressed, I am not scared, I am just curious about all of

> this. Jesus Christ is Lord in my life and I truely believe that I

> have so many days on this earth and absolutely nothing can shorten

> that time. So this disease doesn't scare me in that way. I am just

> curious about quality of life.

> <><TammieD><>

>

>

Dear Tammie,

Had I known then, what I know now, I would have waited for treatment.

Pre-treatment symptoms include fatigue. Post treatment, if you fail,

includes UTTER EXHAUSTION!!!!!!!!! With all that aside. My liver is in

great shape, it's the rest of me that is coming unglued. I would recommend

that you do the interferon. I wasn't completely a non-responder, but I

wasn't reacting the way the protocal said that I should. Dr. Nemec told me

to go home and forget about it. I should have listened. Instead, I did the

combo. Not smart on my part, because it wreaked havoc on my own immune

system, which up until that point had been holding it's own. I don't know

what your PCS is, but I'm with you. If God wants me on this earth, for

whatever reason, I'll be here. When he calls me home, I'll go willingly.

That's not a suicidal statement, its just the way it is. In the meantime, I

will do my best to cope with where I'm at.

I don't know if this is of any help. Each of us responds differently to

this. It also depends on what else you're doing in your life. I would

recommend that BEFORE you start treatment, you lower your stress level as

much as you possibly can. I had the FBI tapping my phone, my computer, and

following me, during mine. No, I " m not a fugitive from justice. It's a long

story. They finally went away. They went away knowing a lot more about HCV

than they probably ever wanted to learn. :-)

Good luck and good health,

Anne

[Guest guest]

Roula:

Does your daughter have horrible screaming fits of pain at night. I am just

so upset right now. Clarice had such a bad night. I have never heard her cry

out in pain like that. Thanks for he info. She goes to her rheumatologist

next Tuesday, seems like forever away.

[Guest guest]

Hi ,

My daughter Rana ( 2 years and 8 months old) has exactly the same condition

in her hands and she was diagnosed as systemic onset JRA. Sometimes it

disappears . Wish your daughter all the best.

Roula ( Mother of Rana)

Question

> Hello everyone. my daughter was complaining about pain in her hands

> lately. I turned her hand over yesterday and she had these weird red

> patches across the tip of each finger, across the palm of her hand

> just at the joints and on her hand where her thumb connects to her

> hand. Her hand was extremely warm while the rest of her body was

> cool. Is this a typical symptom of JRA. Has anyone else seen this.

> Clarice also had a rash surounding both her hips more on the right

> then the left. I am not sure what to make of this.

>

>

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

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>

>

[Guest guest]

Have you tried Aqua-Flora for Candida? It can be bought at most local health food stores, you can read about it here http://www.loaves-n-fishes.com/aquaflora.htm I have several friend who have candida, and they swear by this stuff. I have never used it, but they say it works wonderfully.

~Karma

http://loaves-n-fishes.com

-----Original Message-----From: almr@... [mailto:almr@...]Sent: Monday, June 18, 2001 6:04 PMbowel cleanse Subject: QuestionHi, I posted this before, but I dont know if it came up:---------------Im new and just had a couple of questions. I havce had candida for a while now, but I brought it to a front by eating uncooked chicken about 6 months ago.After treating the candida, which is gettting less I have had a dry blood analisys which my doctor told me had parasitic markers in it. He has thus put me on Paragard and black walnut tincure. He also hinted that there might be a "die off" effect as with candida. Is this true?Also I suffer still from slight depression and mood swings. I know this is related to the candida, but can parasites cause this as well?please could you give me some advice!thanks to all of you very much for readingAlistair

[Guest guest]

just fyi.. my symptoms before treatment were:

sun and heat sensitivity - made me sick

fatigue - some days i wouldn't have to do anything and I'd be exhausted,

some days I could do anything I wanted and not feel tired.

joint pain - would move aroudn my body, sometimes my shoulder and sometimes

my thighs or ankles or neck etc.

muscle aches and cramps

ankles and feet hurt like being stuck with hot needles, especially after

working on them all day

flu-like and fatigue - seemed like I would be getting sick, but rest helped

frequent infections - more sinus problems, bladder problems

mental fog - mostly came with the tiredness

insomnia - i seemed to need more sleep but got less

irritable - i seemed to be more irritble, snapped at things I never would

have before, the anti depressant helped with that and with sleeping

diahrea (sp) - when I got too tired, I'd get diarhea, when I rested it went

away

cholesterol - went up and can't get it down, i normally have very good

cholesterol (even for being overweight, my good/bad is good too haha) but

the more tired I got the more it seemed to go up (noticed over time)

it's just little things that add up, not really just one thing. And you

don't notice it at first, till you start to understand the virus and how it

affects you.

Course, other factors should be checked too - thyroid (heppers can have

problems with thyroid), gallbladder, infections, etc etc, make sure there

aren't other contributing factors. I try not to let the hep c mask out my

thinking so I don't ignore something that might be serious or easy to fix.

Hope this helps

alley

[Guest guest]

Correction: Baclofen inhibits synoptic responses in CNS by

decreasing GABA which decrease neurotransmitters functions,

frequency, and severity of muscle spasms. It also has CNS depressant

effects.

> Does anyone have, or have a child that has, a Baclofen pump

implant?

> The Baclofen (which is suppose to be a GABA)is used to control

> spasticity, but it also increases the threshold for seizures. I

> don't understand, I thought that GABA was good in helping to

control

> seizures. If I'm wrong, please let me know.

>

> Well anyway, I recently decreased the amount of Baclofen my son was

> getting by 25 micromilligrams and now he is starting to get more

> seizures. I don't know if his seizures are related to this, and

I'm

> wondering if I should raise it back up.

>

> RuthAnn

[Guest guest]

Yes, it could and it does. I took black walnut and it gave me

die-off. Good stuff. Parasites can release not only toxins but

bacteria that they may have been nourishing. Killing them releases

the bacteria which also makes you sick and depressed. Killing

this off with herbs brings about die-off also.

LIZ D

Question

Hi, I posted this before, but I dont know if it came up:

---------------

Im new and just had a couple of questions. I havce had candida for a

while now, but I brought it to a front by eating uncooked chicken

about 6 months ago.

After treating the candida, which is gettting less I have had a dry

blood analisys which my doctor told me had parasitic markers in it.

He has thus put me on Paragard and black walnut tincure. He also

hinted that there might be a "die off" effect as with candida. Is

this true?

Also I suffer still from slight depression and mood swings. I know

this is related to the candida, but can parasites cause this as well?

please could you give me some advice!

thanks to all of you very much for reading

Alistair

[Guest guest]

,

No she does not have any screaming fits only very hot palms. We hope she'll

recover soon.

Roula

Re: Question

> Roula:

>

> Does your daughter have horrible screaming fits of pain at night. I am

just

> so upset right now. Clarice had such a bad night. I have never heard her

cry

> out in pain like that. Thanks for he info. She goes to her rheumatologist

> next Tuesday, seems like forever away.

>

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

for 1 let the dr know and get it checked out

never has had a rash with her JRA unless you call a green streak a

rash on her hip when she couldnt walk

they told me that was a vein close to the skin and not to worry about it

about 4 months ago got this red spot about a quarter in length

on the top on her hand right at the thumb i had it checked out and the dr

said she probably touched something shes allergic to

lololol this i know would be wrong she hasnt been around anything she hasnt

touched before

but it finally went away why it was there i dont know

maybe JRA related

Robbin

[Guest guest]

Hi , Roula, Robbin-

Never thought to mention it before but Mickey (7, systemic) periodically

gets an excema like rash across the backs of her hands and to the first

knuckle of her fingers... after a few days it turns brownish, like a

sun-burn ready to peel, and it does eventually flake/wear/wash away. The

docs at Sick Kids at first just noted it as a peculiarity, but since then

have had 2 other systemic patients present with the same thing. They don't

know what to make of it, but think it is somehow related. I haven't noticed

if it happens at any particular time related to flare ups, or even weather.

Lynn

From: Robbin40@...

Reply-

Date: Wed, 20 Jun 2001 10:27:50 EDT

Subject: Re: Question

for 1 let the dr know and get it checked out

never has had a rash with her JRA unless you call a green streak a

rash on her hip when she couldnt walk

they told me that was a vein close to the skin and not to worry about it

about 4 months ago got this red spot about a quarter in length

on the top on her hand right at the thumb i had it checked out and the dr

said she probably touched something shes allergic to

lololol this i know would be wrong she hasnt been around anything she

hasnt

touched before

but it finally went away why it was there i dont know

maybe JRA related

Robbin

To manage your subscription settings, please visit:

For links to websites about JRA:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Anne said <<The bad news is that I just about died from the

treatment. One of these days, I am going to LEARN to KEEP MY BIG MOUTH >>

haaaaaaaaaaaaaaaa shut your mouth before you pop that riba! hahahaha

I hated the riba too, I still have lumps on my body from it, but they are

slowly getting smaller. Damned stuff.

alley

[Guest guest]

Anne said <<The bad news is that I just about died from the

treatment. One of these days, I am going to LEARN to KEEP MY BIG MOUTH >>

haaaaaaaaaaaaaaaa shut your mouth before you pop that riba! hahahaha

I hated the riba too, I still have lumps on my body from it, but they are

slowly getting smaller. Damned stuff.

alley

[Guest guest]

Lynn:

I read at one of the links at the JRA site that there is a JRA that presents

that psorisi you mentioned I will try to find the exact link for you.

[Guest guest]

I have read some things that say you can just use GSE. My guess (and

its only a guess) is that it does not work as fast or furious as

other treatments or combinations. I am thinking its a bit like the

tortise and the hare.

Througout my treatment, the GSE is the one thing that I have kept

constant, while rotating other treatments such as Whole Approach,

Yeast Defense, Nystatin, and Diflucan.

> I have what may be a dumb question. If Grapefruit seed extract is

one of the

> only things candida does not get immune to...then why could we use

this and

> this only to rid ourselves of this stuff?

>

>

> thinking I am dumb today,

> moons LOL

[Guest guest]

Kristie --

Where did you get your surgery done? Did your neurosurgeon have prior

experience to working on a person with dwarfism? How many levels was

your laminectomy? Are you taking any sort of pain meds now? Are they

offering any relief?

I've had 2 laminectomies from T-12 to L-5 and with the second I had

my spine fused and Harrington rods inserted. My back is okay, I use

pain pills once in a while (Celebrex or Aleve seems to do it most of

the time) but I admit that I am afraid to move much for fear of

popping a rod.

Rose

> Hi everyone,

I have a question .I had a lower lumbar Laminectomy Decompression..In

februaru and My doc cut out spaces In my vertebres..and Im still

hurting, so now he wants to try Pain shots in my back, And Im worried

about it because I was always told not to get shots in my back

because it could paralyze me..But my Doc said it was ok because he

cut spaces so there is room for a needle..I know Doc's are smart and

now alot but..I just wanted some advice from a L.p that knows what Im

talking about .and if it is ok now to get the pain shots in my

back..thanks aNY ADVICE WILL BE APPRECIATED

> ..kRISTIE

[Guest guest]

I feel like I should begin this post with a disclaimer lol " I am not an

employee of any drug company "

To Lia and , I too felt the exact same way about taking another pill,

but you have to realize that the one's you are already taking can very well

do some powerful things to your mental state. The prednisone had me such an

emotional wreck that I would cry at the drop of a hat, my poor family didn't

know what in the world was wrong or what to do. lol They did adjust pretty

well though, when I would burst into tears and leave the dinner table they

would take bets on what set me off! It was the song on the CD, Dad's dumb

story, her butter wouldn't stay on her roll, etc...lol I also had never

taken an antidepressant before and am sorry to say I bought into some of the

stereotypes about people needing a " pill " to deal with their day to day lives

I also didn't really think it would help...boy was I wrong. Within a week

of starting on Zoloft my emotions were so much more in control that I felt

almost normal again, and I started napping a lot less. It isn't going to take

away all of the icky stuff that goes with liver damage but it certainly

helped me deal with them in a way that didn't make me feel like I needed a

padded cell. What this does to your life and relationships really stinks and

chances are we are all going to be dealing with it for some time to come, so

if there is something out there that may help you feel a little more like

your old self I say go for it! I really think that depression can exaggerate

a lot of the symptoms and side effects we are already dealing with, so if you

can eliminate the depression you may well feel better all the way around and

your family and friends will find you easier to deal with too. One other

thing, if you should try it and have any problems don't give up, there are

options and what works well for one may not for you, I have changed from

zoloft to celexa and that works better for me. Good luck to you both, take

heart you are not alone. We all understand....Peggy/ autoimmune do do

[Guest guest]

, Sometimes the docs have no clue as to how we feel they don't understand as well as most people don't. If your numbers are in the 1100 range. O f course you won't feel well. What are they thinking? And most all of us feel the pains you do.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

Hi All,

I take 3 different antidepressants. I take Trazodone 200 mgs, Zoloft 100mg, and nortriptalyne 25 mgs. And even with that some days are hard for me. I keep telling my family that I am not sure why I am still alive. I get mean without knowing it but somebody piss me off I let them know it I am not good at holding off. My Mom says I am here to piss people off. If so I am glad to still be alive to make sure everyone suffers my wrath, usually it is needed. You are normal within the disease perimeters.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

I believe she said her numbers are near normal now, from being in the 1100's.

I have been doing weekly labs since June and I can't figure the darn thing

out either...some weeks that I have the best numbers, I feel the worst and

some weeks I have awful numbers and feel just great! lol Have you had a

biopsy done? The numbers don't tell the whole story they are just an

indicator of what is going on now and how you are responding to medications.

If you had extensive damage to your liver it is going to take time to heal

and until it does that you are still going to have times when you don't feel

good. Stress, depression a host of other things going on in your life all

have an impact on how well you do and how you feel too. Peggy

[Guest guest]

hmm you may need to rethink that name " happy pills " lol gayle doesn't

sound like a happy camper to me Just kidding you gayle...actually I didn't

know you could mix antidepressants and why would you need to, do some do

things that others don't or is it just how a person responds to each of them?

Gayle, you must have a pharmaceutical degree to be able to sort all that

out...either that or you have been at this for some time. We all learn way

more than we ever hoped to know about drugs doing this. Peggy

[Guest guest]

Hi Peggy,

I had to have an emergency transplant in June 99. I am the exception to the rule I still do not feel well. You do adjust a long the way but be patient some people take longer to adjust. After having taken the OKT3 for rejection after transplant. Nothing fazes me. Some of you are more sensitive to meds than I am. Vicodin feels like I am eating candy. I take 17 different meds twice a day. Oh and my liver was so damaged that it shrunk to the size of a fist. I have had 2 biopsies and still hate them and needles for me are the worst.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

Peggy,

Actually I am not angry anymore sorry if it sounded like it. Yes, any day now I should be getting my degree for the research I have done for 2 solid years. Also tell all of my docs that I research extensively. I research every test and every medical problem I have. I do not like surprises and I have some docs that really challenge me they don't enjoy knowing that I already am armed and ready. As for taking 3 antidepressants I take the Zoloft for my sanity, The Trazodone is for severe sleep apnea and for me able to sleep, the Nortryptaline is for pain of having Fibromyalgia, degenerative bone disease and, Scholiasts. Yet all three of these drugs won't come close to dulling the chronic pain I have daily. I have blood testing sites I refer to for my labs and why. I have sites for COPD, goes on and on since I am sick what else do I have to do. I can't work. Even volunteering for donor awareness I have had to call in sick.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

Peggy,

Scoliosis.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

hi Gayle,

what causes your liver to shrink like that and at what stage does it happen?

Greg

TX