checking in

[Guest guest]

Hi -dz- Jan, Dennis, and everyone else who never post

anymore..... First I would like to apologize to Dennis for not sending

my condolences in your loss..... Jan I have been so busy with family

that I want to hide for a week.... Really stressful........ I am not

used to so many people at one time.... I always had quiet......... My

Grandson and daughter went back to Florida and my son is lost without

his son....... It is so sad when there is a breakup with children

involved. It wasn't on his part....

-dz- you are so right about the crazies in this world....... This

disease really takes a lot out of us and I no longer have patience for

disrespectful people including family members..... Our lives are in the

balance and if I am living on borrowed time I will probably be

remembered as the witch.......... ;o I have been really losing it over

things that I would have walked away from a few years back..... Does

anyone else feel this way or am I the only one?????

Angel Hugs,

Diane

[Guest guest]

--- diane214@... wrote:

Hear! Hear! Diane, I have found my fuse is a little

bit short at times. So many people just do not

understand. I am in a Home Fellowship group with my

church, and I have missed quite a bit since I've been

on this tx, last night when I called I got this little

hint of " bitchiness " , you know the unsaid tone of

voice, " well I hope you are feeling better, you really

SHOULD be coming to these... " Where I know I have just

been reprimanded and it gets me a little angry. I was

up all night Wednesday after my shot, and I dragged my

butt through work for 8 hours and when I got home I

was not up to going anywhere. People just don't seem

to understand that we really are sick.

I went to see my PCP the other day for an ear

infection and he asked about my tx, I told him I was

over halfway through, now I just hope it did some

good. He told me that it was a very difficult tx and

to " look at it this way, you are a champion for going

through this " . I don't really quite that much of it,

but it was nice to have somebody who is not on this

tx, acknowledge that it is not an easy path to walk.

-dz-

This

> disease really takes a lot out of us and I no longer

> have patience for

> disrespectful people including family members.....

> Our lives are in the

> balance and if I am living on borrowed time I will

> probably be

> remembered as the witch.......... ;o I have been

> really losing it over

> things that I would have walked away from a few

> years back..... Does

> anyone else feel this way or am I the only one?????

>

>

>

> Angel Hugs,

>

> Diane

>

>

__________________________________________________

[Guest guest]

Diane we have all beeen there. You love the family but damn it;s good when it's over too. We aren't cruel or heartless. We are human!! I'm sure I am not the only one who feels like this Heck my dog went spend the weekend with my neice and I miss him already but just before he left I was so mad at him. He thinks he's a person. hahaha. Good to hear from ya. E-mail me..Got lots to tell ya.

For tomorrow is another day!!

[Guest guest]

Hey -dz-

I feel better knowing that I am not alone in my moodiness...... ;o

Angel Hugs,

Diane

[Guest guest]

So have I . I stay inside most of the time and alot of times not even answer the door. I just don't care for company. I am a very fun, good person but on the days I'm just not in the mood...Well I'm just not in the mood. We are only human.

For tomorrow is another day!!

[Guest guest]

I try to keep my cool, but you can only pile that

stress so high and it's bound to come spilling out.

Usually at the wrong moment. I tend to hold it in a

little bit and that eventually becomes a problem. I

have little outlet for my anger and frustrations these

days, exercise would probably help, but I'm too darn

tired to really get a good workout. So, I'm afraid

it's generally the people I love the most that get

blasted for some little slight either real or

imagined. -dz-

--- diane214@... wrote:

> Hey -dz-

> I feel better knowing that I am not alone in my

> moodiness...... ;o

>

>

>

> Angel Hugs,

>

> Diane

>

>

__________________________________________________

[Guest guest]

I think all dogs think they're people! I have

really become a hermit, I hardly even answer the

phone. I put up with my job and that's about the limit

of what I can handle in a day. I just have to hope

that my friends and family understand. -dz-

--- Jannewilms42@... wrote:

> Diane we have all beeen there. You love the family

> but damn it;s good when

> it's over too. We aren't cruel or heartless. We are

> human!! I'm sure I am not

> the only one who feels like this Heck my dog went

> spend the weekend with my

> neice and I miss him already but just before he left

> I was so mad at him. He

> thinks he's a person. hahaha. Good to hear from ya.

> E-mail me..Got lots to

> tell ya.

>

> For tomorrow is another day!!

>

__________________________________________________

[Guest guest]

I am the same way. They'll just have to wait until my

tx. is over with, then maybe I'll be a little more

sociable. -dz-

--- Jannewilms42@... wrote:

> So have I . I stay inside most of the time and alot

> of times not even answer

> the door. I just don't care for company. I am a very

> fun, good person but on

> the days I'm just not in the mood...Well I'm just

> not in the mood. We are

> only human.

>

> For tomorrow is another day!!

>

__________________________________________________

[Guest guest]

Yes I am the same way. I did get out this weekend with the in'laws and my youngest daughter. Went out of town to a motel and went swimming. It was mostly for the kids but it was great to get away from the headaches going on over her. I needed it.Have a great day!!!!

[Guest guest]

Hi Joanna!

As long as you have well documented medical records (cirrhosis) you shouln't have any problems. I listed every single med that I was talking

and every single side-effect that it can cause which I got the full list from

the copy of the rx that I got from the pharmacy. Some of those meds at

least the ones I take have side-effects a mile long. I didn't have to go to

a hearing because I had just started treatment and was getting extremely ill due to the meds so they conducted telephone interviews with me. Good luck to you !

tony

[Guest guest]

when I got alot worse recently and my neck got really bad, my husband suggested taking some flagyl. I took 1500mg one day and approx 1500mg the next ...one tablet with each meal.) my neck improved within 24 hrs. I believe one or some anearobic bacterie or L-forms that are resistant to mino were acting up. For me the response was fast so I believe the abx was actin on something. I hate flagy so I only pulse it a twice times a week. Good luck and let me know if you need more info. kathy

rheumatic Checking In

I've been off line for over a month due to computer problems and need some advice.I've started Minocin again only 100 mg. once a day this time. After my hospital admittance last year I'd been on 50 mg.I've had my ankles sore and swollen, my left one quite bad and I can't put any weight on it when I first stand. After a while it eases enough that I can walk but with a limp. Feels like when you get a crick in your joint. Also my wrists ache on and off and turning my neck is painful. Worse some days than others.I find I have pressure in the hollow of my throat on and off also.Anyone experience any of this and hos did they cope. Energy level isn't great either.Thanks,Bev To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Dear Bev,

You were on a lower dose before and, whenever you start the antibiotic again,

you are likely the get the herxheimer reaction all over again. I would start

over with only 50mg Mon Wed and Fri and then work up slowly. See if you tolerate

the lower dose better - you lose nothing by doing this.

Chris.

>

>I've been off line for over a month due to computer problems and need some

>advice.

>I've started Minocin again only 100 mg. once a day this time. After my

>hospital admittance last year I'd been on 50 mg.

>I've had my ankles sore and swollen, my left one quite bad and I can't put

>any weight on it when I first stand. After a while it eases enough that I

>can walk but with a limp. Feels like when you get a crick in your joint.

>Also my wrists ache on and off and turning my neck is painful. Worse some

>days than others.

>I find I have pressure in the hollow of my throat on and off also.

>Anyone experience any of this and hos did they cope. Energy level isn't

>great either.

>

>Thanks,

>

>Bev

>

>

>

>

[Guest guest]

, I've got a really FAST computer, and I have it all to myself, but it's ME that's not keeping up, we do get an awful lot of email from this list (over and above my regular email!). But it's worth it, because there's so much good info. I was on three other Hep C Support Lists, one of which was too technical, one which didn't stick to the subject but got into political and other issues, and there were hardly ever any other posts to the third one, so in my mind, this is the BEST Hep C list. Thanks to all for taking me in!

[ ] Checking in

Hello, Terry, , Jann, Dave, Sharon, , Hanna, Diane, everyone else and all the newcomers (sorry if I missed any names at the moment). Having a dilemma with this group. I quit briefly, then realized I missed everyone, so I got back on.

But the problem is, it seems the volume of messages has increased and I'm just not keeping up with it too well. So, apologies if I overlook a comment directed toward me. Plus, I have to share computer time with my wife, who periodically complains that I'm hogging it to myself too much (I'm guilty, but better than I used to be). And, my present computer is SL-O-O-W and unstable (my computer guy is building me a new hard drive), which doesn't make it any easier.

Guess I'm just expressing some frustration; I'm still here.

On another note: I just had blood work done, which I thought was for viral count, but it was for white blood cell count instead (down slightly, which the doc says can be a problem with the pegintron). I'll be at the 6-month point in a couple weeks and will have the liver panel done then.

The MD says, if I'm still negative, than I should stay on the program for another six months. But if it's positive (after my first negative count), then that means the meds aren't working and there's no point in continuing. If that's the case, I'll just hope for the best and wait for something else to come along.

Has anyone else been told something similar? BTW, Sharon, glad to hear you're near the end of a difficulty journey. I'm sure it'll be a great relief to you to get off it!

Well, it's supposed to be the big tourist-attracting Fall Foliage season here in Vermont, but it's hot and muggy this weekend.

I think my late mother-in-law was right: She used to say that when they first put men to the moon back in 1968, it did something weird to the weather, which has never been the same since. Hmmm, think she had a point? Oh, yes... the government covered it up, of course, just like they did in Roslyn, New Mexico.

Kind regards to all,

[Guest guest]

Hi, ,

Sorry to hear about your white count being down...did the Doc recommend doing anything to help out with that?

Thanks for the kind words. I should clarify; that wasn't really bad news, just par for the course. It's just something that has to be monitored with treatment, and if it drops too low, then I guess you'd have to stop taking the meds. Actually, it was good news: he said my white cell count hasn't dropped as much as it does in most patients.

Hope your bearing up okay with your own treatment,

[Guest guest]

Awww, twins... that's a handful I'd assume. I have an 18 mo old and its enough

for me =) And yes, I can tell the weather by my bones.... if it is really damp

or really cold.. I know it....

[ ] Checking in

Hi all! Sorry I've been so quite, I've been really busy. Baby and I

are doing good. I've been having a mild flare, can't decide if it's

all the bad weather here or if I've been off meds long enough for

symptoms to reappear. I fell the other day on ice, that has not

helped either. So far I've been trying to tough it out without

tynenol, in case it gets bad, that's the only thing they will let me

have, so I don't want my body to get used to it yet. I get an ultra

sound next month, I can't wait, they won't rule out twins until I

get one. ( yes, we've been sweating bullets here )

Anyhow I thought I'd let you guys ponder this point: I can almost

predict the weather by my joints, when there is a bad storm or

massive cold front moving close to our area my joints ache. My

mother on the other hand (she has osteo-arth.) usually feels

energetic and great, none of her daily pain, when the weathers

getting bad. I thought that was interesting and wondered if anyone

else ever heard of or experienced this?

I hope 2003 treats us all better than 2002! Happy New Year and God

bless!!

--Merribeth

[Guest guest]

Vivian..Do you walk alot..I found the more Iwalked the better I felt..Go to

walmart or target and just want around for 30 mins or so..it will make you feel

better..It did for me..

I had a bad day yesterday. A bit of pain and swollon but its gone now so

thats good. I think maybe I just moved the wrong way and the muscle flared up..

[Guest guest]

Vivian.. I didnt start driving till 3 weeks. So maybe you drove to early.

When I was 2 weeks it was still hard getting up and down and rolling in bed was

horrible..But it will get easier.. I know its so easy to say that but I thought

life was just horrible feeling like I did. but kept in mind its got to get

better it just has to..Now its better and I am driving but still swing my legs

out of the door first and do things slower then before. I still press on my

thighs when getting off the couch. And let me tell you this 2 weeks of rain rain

rain rain has me aching just a tad from that..

Please keep your spirts up. Look to feeling better soon

[Guest guest]

> Vivian..Do you walk alot.. <

I am always walking...hard to keep me in bed. Thought maybe I was walking to

much?

Most of the pain is felt on movement...like when getting out of bed, rolling

over in bed, in and out of chairs, or when I have had a busy day (errands, lots

of walking, and in and out of my vehicle). Just sharp stabbing pains in the

fusion area, although I can feel things actually knotting up when I have sat to

long.

Just hard to figure out what is normal for 2 week post-op and what is to be

concerned about. And of course, I have a doc who is above all others and can't

be reached for reassurance. He has nurses for that.

Vivian H.

[Guest guest]

> One of the biggest things after surgery is the emotional let down and we

really don't talk a lot about that in here, but it is very real. <

I was doing that last night...thinking " I had surgery for what back problem? "

Because what I felt before was nothing compared to how I feel now. But I have to

keep reminding myself, like the PA said...I have had MAJOR surgery and I need to

tell myself it is okay to take it easy and let others do for me.

Like my Dad has told me...Patience will never be my middle name with a first

name of Independence.

Vivian H.

[Guest guest]

> IMHO you should not still be in as much pain as you are,

get it checked!!! <

Will call the doc's office and ask them what to expect for 2 weeks post-op. I am

usually a quick healer and even the nurse said that when she took out my

staples. But the insides hurt, usually with movement (in and out of bed/chair,

rolling over in bed, etc)...sharp stabbing pains from the fusion area itself.

Vivian H.

[Guest guest]

> When I was 2 weeks it was still hard getting up and down and rolling in bed

was horrible..But it will get easier.. >

Okay...that is what I needed...what I am going thru is pretty much par for the

course.

I called the doc's office yesterday and left voice mail, which probably won't be

returned until today. More or less told them the Tylenol was nothing in helping

with the pain and what else do they suggest.

When I asked about driving, the nurse just said activity as tolerated. I did

several short runs and always had someone with me...just in case I got to

hurting to bad, and never took my meds when I knew I was going out. I have

gotten getting in and out of the car down, easier to do as the driver. As a

passenger, my right leg drags and I have to have help raising it high enough to

get into the vehicle.

We do what we can...and watch others do the rest.

[Guest guest]

Hang in there, Lynne, you'll get those days now and then, hopefully they're few and far between. -dz-Lynne Dunham <lynne@...> wrote:

Well I was doing pretty good with the treatments, but today is far the worst. Cramps everywhere, work only a little bit, slept most of afternoon, heading back to bed. Talk later, Lynne.

[Guest guest]

Bruce-

Glad to hear you are doing well! You can kind of expect that

members will disappear for a while when they get the right regimen

down- so a hiatus is a good sign that you are out having fun.

Best of health,

Dano

> Hi Gang,

>

> Hmmm, I see it's been 5 or 6 weeks since I last posted. I do have

an excuse: I've been

> feeling effing GREAT! Best in 2 years. Mental and physical energy

are high, mood and

> enthusiasm are terrific, libido & erections are right where I want

them. I'm keeping very

> busy doing projects I love. I can function again. CFS-like

symptoms are 80% gone. I'm out

> walking more, up to a mile without collapsing afterwards. My wife

and I took our first trip

> in a year, and I was able to do half the driving. Muscle tone is

back, and I'm losing weight.

> The turning point seemed to be the end of April. I'm a very happy

man indeed.

> Especially considering I was virtually housebound for 10 of the

past 12 months,

>

> So, what miraculous medical breakthrough accounts for this? I have

no idea, but as the

> saying goes, if you throw enough shit against the wall, some of it

has to stick! So here's

> some of the shit I've thrown:

>

> SLEEP: I've been diagnosed with severe obstructive sleep apnea,

and I'll be getting a CPAP

> machine on Friday. In the meantime, I've done one ridiculously

simple thing that's helped:

> I threw away my pillow! I think lying flat has helped boost

restful sleep at least 20%. I've

> also added Tylenol PM as needed when minor aches keep me awake.

>

> HORMONES: TRT is currently T-cypionate subQ 100mg/week, Arimidex

0.5mg E3D and

> DHEA 50mg/day. Attempts to control E2 with DIM (Phytopharmica)

were unsuccessful,

> after trying a 120mg tablet/day, then 2/day, then 3/day, so I

started back on Arimidex at

> a relatively low dose. So far there are no signs I'm driving E2

too low. Energy had been

> improving even with high E2 (go figure), but erections were poor.

Now morning wood is

> back nicely after resuming Arimidex. I did a couple of 5-day

courses of Clomid in May,

> and I could feel it in my testicles. I can't attribute

improvements to Clomid, but it didn't

> hurt.

> Labs 4/14/05: T: 470 (241-827ng/dL), E2: 69 (high, 0-53pg/mL)

> Labs 5/26/05: T: 479 (241-827ng/dL), Free T: 21.9 (7.2-24.0pg/mL),

E2: 64 (high, 0

> -53pg/mL)

> TRT isn't the sole cause of improvement, but it's a major part. I

know that if I stopped I'd

> crash & burn inside 2 weeks.

>

> INFECTIONS: I had frequent herpes simplex infections through the

winter. I managed to

> stop these with a course of Famvir, and increasing L-Lysene from

1,000 to 2,000mg/day.

>

> NUTRITION: I added CoEnzyme Q10, 200mg/day. I think that's been a

big help, I'm not

> going to stop it to check. I added it at the urging of a friend. I

mentioned it to my hormone

> doc, who said " That's good stuff! EVERYBODY should take Co-Q10! " .

I also added Omega

> 3,6 & 9, and changed to a more powerful B vitamin complex. I

continue a multivitamin and

> extra magnesium, zinc & vitamin C. I also moved the whole

vitamin/supplement dose to

> mornings, with food, eating bigger breakfasts earlier.

>

> Other: Lots of things. Like I changed my shampoo in case there was

an allergy. Prayer

> helps. And I couldn't have come this far without the support of

you folks in this great

> group, thank you, thank you, thank you.

>

> Peace,

> Bruce

[Guest guest]

Hey Bruce:

I'd say your miraculous recovery is all due to lots of effing sex. Just keep it

up!

Good to see you back on the Group dude -- we've missed you.

Best Regards,

Gene

Checking in

Hi Gang,

Hmmm, I see it's been 5 or 6 weeks since I last posted. I do have an excuse:

I've been

feeling effing GREAT! Best in 2 years. Mental and physical energy are high,

mood and

enthusiasm are terrific, libido & erections are right where I want them. I'm

keeping very

busy doing projects I love. I can function again. CFS-like symptoms are 80%

gone. I'm out

walking more, up to a mile without collapsing afterwards. My wife and I took

our first trip

in a year, and I was able to do half the driving. Muscle tone is back, and I'm

losing weight.

The turning point seemed to be the end of April. I'm a very happy man indeed.

Especially considering I was virtually housebound for 10 of the past 12

months,

So, what miraculous medical breakthrough accounts for this? I have no idea,

but as the

saying goes, if you throw enough shit against the wall, some of it has to

stick! So here's

some of the shit I've thrown:

SLEEP: I've been diagnosed with severe obstructive sleep apnea, and I'll be

getting a CPAP

machine on Friday. In the meantime, I've done one ridiculously simple thing

that's helped:

I threw away my pillow! I think lying flat has helped boost restful sleep at

least 20%. I've

also added Tylenol PM as needed when minor aches keep me awake.

HORMONES: TRT is currently T-cypionate subQ 100mg/week, Arimidex 0.5mg E3D and

DHEA 50mg/day. Attempts to control E2 with DIM (Phytopharmica) were

unsuccessful,

after trying a 120mg tablet/day, then 2/day, then 3/day, so I started back on

Arimidex at

a relatively low dose. So far there are no signs I'm driving E2 too low.

Energy had been

improving even with high E2 (go figure), but erections were poor. Now morning

wood is

back nicely after resuming Arimidex. I did a couple of 5-day courses of Clomid

in May,

and I could feel it in my testicles. I can't attribute improvements to Clomid,

but it didn't

hurt.

Labs 4/14/05: T: 470 (241-827ng/dL), E2: 69 (high, 0-53pg/mL)

Labs 5/26/05: T: 479 (241-827ng/dL), Free T: 21.9 (7.2-24.0pg/mL), E2: 64

(high, 0

-53pg/mL)

TRT isn't the sole cause of improvement, but it's a major part. I know that if

I stopped I'd

crash & burn inside 2 weeks.

INFECTIONS: I had frequent herpes simplex infections through the winter. I

managed to

stop these with a course of Famvir, and increasing L-Lysene from 1,000 to

2,000mg/day.

NUTRITION: I added CoEnzyme Q10, 200mg/day. I think that's been a big help,

I'm not

going to stop it to check. I added it at the urging of a friend. I mentioned

it to my hormone

doc, who said " That's good stuff! EVERYBODY should take Co-Q10! " . I also added

Omega

3,6 & 9, and changed to a more powerful B vitamin complex. I continue a

multivitamin and

extra magnesium, zinc & vitamin C. I also moved the whole vitamin/supplement

dose to

mornings, with food, eating bigger breakfasts earlier.

Other: Lots of things. Like I changed my shampoo in case there was an allergy.

Prayer

helps. And I couldn't have come this far without the support of you folks in

this great

group, thank you, thank you, thank you.

Peace,

Bruce

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

[Guest guest]

Bruce,

AWESOME NEWS!!!

Now just don't fall into the overdoing it trap. Give your body time

to try to heal permanently. I know, easier said than done...

Mark