Doctor visit

September 7, 2002

here's some tx food for thought... Hi all!I know I have been very quiet latly...been responding in private andreading most mail.......still no change regarding my health so I stillremain negative and I ended my treatment in april 2000.So far so good......my treatment continued for the full lenght, 48 weeksand I managed to clear on the standard combo. My guess to why is that myviralload was down when I started to 588.000 copies and even with agenotype 1a/b it must play a part, so does my gender and age and the factthat I dont drink(never liked it......and now I cant tolerate it, get ahangover by smelling the lid) so my liver had minimal damage.But for all oldies, I´m still as sick as on the combo, the pain and thefever is still here and I get every infection possible and some impossibleto.......I´m still skinny as Twiggy.......5"2 and 82 pounds........my 13 y/o son is7 pounds heavier than me.........and the 7 y/o is only 54 pounds lighterthan me. Dont give me deit advise...I have already tried most everythingand I cant tolerate it.....it is like my cells wont take it in cause itcomes out the back almost as fast as I can get it in....dont suggest that italk to my doc...he has no clue...been to visit specialist afterspecialist, done tests they wont ever preform on me again....they cant findanything wrong. But somehow it is connected with this darn hepc virus andthe darn cemichals they give us as a cure.Well, I´m still here and I´m still alive....but I'm not well.

well good day to everyone.It's a wonderful Friday morning, temp around - 20 degrees C. That's warmcompared to earlier this week, just yesterday morning it was -45 degrees C withthe windchill factor and on Monday -58. I had my two year post-treatment test done one Dec 13, 2001. It usually takesapprox. 30 days to get the results, but this time took 60 days, and I wasgetting extreemly nervous. But I went into the doc office yesterday and theycalled to see what was happening with the test. So I have the verbal report ofmy rna/hcv (pcr) : NEGATIVE I'm so happy. Also had immunization for Hep A andB, and my test for Hav: reactive, so I have the antibodies to fight hep a shouldI get it. I was really nervous this time for some reason or other. I think itwas the waiting factor. My body ache (not fibromyalgia) is getting worse, andstill no answers. But I'm still looking. I am hoping to see a neurologistsometime this spring. Whether or not he/she finds the cause or the solution isanother story. But I have to keep on trying to find those answers. I justcan't think of the possibility of living the rest of my life (which hopefullywill be another 25+ years) in constant body pain.! But for today I am a HAPPY CAMPER.I pray that more on this list receive 'negative' results after treatments. There are many on this list who are trying the 2nd and 3rd treatments and Itruly wish them success...Take care everyone. No more testing until Dec 2002, ya! Have a great weekendWanda *hugs*

Hi Gs & Gs, Have not posted for a while but I just wanted to let everyone know that Ihave just received the results of my 1 Year post treatment PCR quan/qual andI continue to remain negative. My ALT is 15 and my AST is 20 which are wellwithin normal limits. I wish I could say that my health has miraculouslyimproved over the past year but I am still battling the effects of severalyears of interferon treatment that have rendered me in a severelydeconditioned state. I am also having some increased heart problems that mayor may not have been exasperated by the lengthy and intense treatment I wason. As happy as I am over winning the battle against HCV, the exhaustingfight has certainly taken it's toll. I am only now crawling out fromunderneath the mantle of depression that was precipitated by the interferon.Due to the erosion of my thyroid caused by the interferon, in all likelihoodI will remain on supplements the rest of my life. On the upside of course, Ihave decreased my chances of liver cancer significantly. I am also free fromall the dermatological and rheumatological symptoms I was experiencing fromHCV prior to interferon. A brief refresher on my history. I am a soon to be big 50 white male.Infected probably 25 years prior to clearing the virus last year. Mygenotype is/was 1a. Despite the years of infection my knodell score wasnever higher than 8 which was a hair shy of fibrosis for me. Approx 12 yearsago I became symptomatic with a variety of mis-diagnosed skin andauto-immune problems. After being a good citizens and donating blood, Ireceived a lovely letter from my local blood bank identifying me as arecipient of the HCV Award. Due to self denial and the ignorance of my PCP Idid not seek an extensive work-up until 1994. After a positive biopsy Ibegan my first experience with ifn treatment. In the first 24 months Ifailed miserably at 2 sub optimum courses of interferon. Shortly after mysecond failed attempt I sought out the services of Dr. Jill of HersheyMedical Center who was conducting a study using Amantadine to treat HCV. Itook amantadine for 25 months which resulted in a significant reduction inviral load and improvement in histology but no viral clearance. After a fewmonth wash out period I decided to try interferon again this time going withInfergen injections every other day. After 7 months I experienced my firstnegative pcr only to breakthrough at 9 months. I continued to take theinfergen while I tried to convince my doc to increase my frequency to everyday. Unfortunately, she was just as stubborn as I was and refused to wilt.Rather than stop treatment and allow my viral load to rebound to pretreatment levels (2.5 million), I used the rationale that if I was going tohave any chance to respond my best chance was now since my viral load wasbarely above detectable limits ( 1000 ). At that time I sought out theservices of Van Thiel who had the reputation of being someone whothought out of the box and had much success doing so. He started meimmediately on 6 million units on Intron A and 800 mgs of Ribivarin. I waspcr negative after 1 month. I continued on the initial dose schedule for 14months. Midway thru treatment I had my 5th biopsy which proved to benegative for the virus. The plan at that point was to remain on treatmentfor 1 more year. 3 months short of 2 years my doc decided to stop treatmentconfident that we had reached the goal. The last 9 months of treatment I wason 4 million units of Interferon and 600 mgs of ribivarin. As you can see I was on pretty aggressive treatment and the verdict is stillout as to what long term effects one might experience as a result. I do not want to be perceived as an ingrate. Trust me, I could not behappier that I remain negative. If anything my experience raises thepossibility/probability that the road to recovery is not a free ride. Thismessage is also a message of hope for everyone that continues to battle thisdisease. The battle can be won! Dan from the Pittsburgh Then there's the guy who's psychosis was so severe he woke up in Canada, didn't know his name or where he was. Gimmee some of that.

Peace, Jeanine

http://hepchelp.homestead.com

>From: claudine intexas

>Reply- > >Subject: Re: [ ] Re: Doctor visit >Date: Fri, 6 Sep 2002 16:16:28 -0700 (PDT) >MIME-Version: 1.0 >Received: from [66.218.66.106] by hotmail.com (3.2) with ESMTP id MHotMailBF4282CE006D400431CF42DA426A97B8147; Fri, 06 Sep 2002 16:20:13 -0700 >Received: from [66.218.67.201] by n38.grp.scd. with NNFMP; 06 Sep 2002 23:16:30 -0000 >Received: (EGP: mail-8_1_0_1); 6 Sep 2002 23:16:25 -0000 >Received: (qmail 80449 invoked from network); 6 Sep 2002 23:16:25 -0000 >Received: from unknown (66.218.66.216) by m9.grp.scd. with QMQP; 6 Sep 2002 23:16:25 -0000 >Received: from unknown (HELO web12102.mail.) (216.136.172.22) by mta1.grp.scd. with SMTP; 6 Sep 2002 23:16:28 -0000 >Received: from [216.111.227.70] by web12102.mail. via HTTP; Fri, 06 Sep 2002 16:16:28 PDT >From sentto-2436732-2463-1031354187-hepc Fri, 06 Sep 2002 16:21:47 -0700 >X-eGroups-Return: sentto-2436732-2463-1031354187-hepc=hotmail.com@... >X-Sender: claudineintexas@... >X-Apparently- >Message-ID: <20020906231628.55535.qmail@...> >In-Reply-<009001c255b0$58a5c860$bd222d44@cg788000a> >X--Profile: claudineintexas >Mailing-List: list ; contact -owner >Delivered-mailing list >Precedence: bulk >List-Unsubscribe:

> >Sorry Margie, but you are remember things a bit wrong. I DO have >terrible tinnitus, and it does drive me crazy! But the tinnitus >started before I even knew I had HCV. In fact, it was a combination >of neck pain, headaches, and the tinnitus which drove me to the >doctor in the first place. I kept insisting my something in my neck >was causing the ringing in my ears. And I kept seeing different >doctors, who would all say there was no way anything in my neck could >cause the tinnitus (even when I copied a page out of textbook which >said cervical spondylosis could cause it), and they all did blood >tests and told me my LFT's were elevated. Then they would all decide >it was the pain medications I was taking for the neck pain causing >the elevated LFT's. Another change in doctors, and that one called >and asked if it was ok to run a hepatitis panel on me to see if that >was causing the elevated LFT's. I thought I was humoring the doctor. >What a shock when it came back positive for HCV! But no, interferon >did not cause my tinnitus. I had it several years before I was ever >on treatment. However, a chiropractor did finally help some with it. >It's not nearly as bad as it was - only when my neck hurts. However, >if all you want is me to post what are the potential side effects of >interferon I'll be happy to do so. It certainly has side effects and >certain risks, just like all medications. As to how each person will >be affected, there is no way to know. One person may be so sick they >can't get out of bed, another may never feel a thing. For most people >it is somewhere in between. Not fun, but tolerable. As a matter of >fact, you or anyone else who wants to can just look up all the >possible side effects and warnings by going to http://www.rxlist.com > All the same prescribing information/warnings, etc., that a doctor >would get is there. Here is the URL for both interferon and >ribavirin: http://www.rxlist.com/cgi/generic2/ribav.htm Here is the >URL for Peg-Intron: >http://www.rxlist.com/cgi/generic2/peginterferon.htm The side >effects of ribavirin are the same no matter which form of interferon >is used. Yes, these are heavy duty drugs, even though interferon is a >biological medicine - something your body normally creates to fight >off viral infections. I wouldn't want to take these drugs unless I >knew my doctor was experienced and knowledeable in their use and >these side effects, and was experienced in treating the side effects. >Yes, there will be some people who have very bad reactions to these >medications. There are also some people who will die from their HCV, >and the chance is greater if the HCV is not treated. Unfortunately, >there is really no way to know in advance about how a person will >react to treatment, and there is no way to know in advance if someone >will progress to liver failure - although biopsy results (especially >more than one is done several years apart) can give you an idea if >you might be one who will progress. >Claudine >--- Margie Schlicter wrote: > > Claudine, I recall reading one of your posts, where you tell all > > of us, how > > the "treatment" caused you to > > have constant ringing in your ears, and how it darn near drives you > > crazy. > > You also mentioned a certain > > type of noise you use to disguise the ringing in your ears....am I > > correct > > on this? I believe I still have that post. > > If this is so, please inform the people on this list,......of this > > being one > > of the terrible side-effects of the > > poisonous treatment. For example, interferon etc. > > Please don't take offense, I just want the people to know all sides > > of this. > > Margie > > >__________________________________________________ >

July 27, 2004

Thank you Dave I will.

Though my appt. isn't until 4:30 so I may not get back on until tomorrow.

I only know two things to ask him and those are Gene type and viral load.

Maybe I won't have to ask? I'm nervous!

Rhonda

[ ] Interesting ads

>

> > I don't know if anyone else reads the posts " on-site " but when you

> > go between messages sometimes you get an ad....and it is for

> > Interferon and ribiviron (sp?). It thought that was kinda

> > interesting that the drugs they use to treat for Hep C are being

> > advertised here. I wonder if this is an ad targeted group. (no I'm

> > not a conspiracy theorist....not really.....) heh heh

> >

> > I woke up today with a nasty sinus headache. Usually I take Tylenol

> > Sinus. But now since I've got the Hep, I'm hesitant to take

> > anything! I don't go to the doctor for the first time till next

> > week, so I'm not sure who to call to ask. So, I thought I'd run it

> > by all you kind folks to get your opinions. Do any of you take sinus

> > medicine with Tylenol in it?? Should we be taking over the counter

> > medicines at all?? Yikes!! I feel like my life is on hold until next

> > week. I hate the waiting.

> >

> > Thanks again for being here.

> >

> > Barbara

> >

July 28, 2004

Well my Dr.'s appt. was not very productive. I told him I wanted to put off

treatment until September when my kids are back in school because my husband

is going out of town for work until then. He agreed that was a good idea as

" this is difficult treatment and you need a support system " . So there wasn't

anything to discuss after that.

Now we have been in this town for a year and I have no friends here{I am

always surprised at how stand-offish people are here} and no family in the

state at all. So this is one of those times when you feel very alone and

isolated.

The good news being the biopsy revealed no damage to my liver but it is

inflamed.

My viral count was high 1.15 million or something like that. He didn't yet

have the results of the geno{?} type so while I was there the assistant

called the lab and asked for it. They did have the results but hadn't sent

them over to the Dr. yet. The assistant was curious as to WHY NOT but of

course never got that answered. The lab was going to fax over the results

which she said could take a while so she told me to go home and she would

have the Dr. call me.

Mind you one of the blood tests that was done was botched by the lab and

instead of saying " hey we botched the test and need more blood " they passed

it off as not having got a blood sample to do the test in the first place.

This was discovered when I was called to do a blood draw and I said " again! "

So after a bit of investigating it was revealed the lab was lying. Which of

course boosts my confidence in them a whole bunch!!

The Dr. hasn't called me yet so everybody here now knows what I know

Have a great day you guys,

Rhonda

[ ] Interesting ads

> >

> > > I don't know if anyone else reads the posts " on-site " but when you

> > > go between messages sometimes you get an ad....and it is for

> > > Interferon and ribiviron (sp?). It thought that was kinda

> > > interesting that the drugs they use to treat for Hep C are being

> > > advertised here. I wonder if this is an ad targeted group. (no I'm

> > > not a conspiracy theorist....not really.....) heh heh

> > >

> > > I woke up today with a nasty sinus headache. Usually I take Tylenol

> > > Sinus. But now since I've got the Hep, I'm hesitant to take

> > > anything! I don't go to the doctor for the first time till next

> > > week, so I'm not sure who to call to ask. So, I thought I'd run it

> > > by all you kind folks to get your opinions. Do any of you take sinus

> > > medicine with Tylenol in it?? Should we be taking over the counter

> > > medicines at all?? Yikes!! I feel like my life is on hold until next

> > > week. I hate the waiting.

> > >

> > > Thanks again for being here.

> > >

> > > Barbara

> > >

July 28, 2004

Sounds much like my beginning. I had a big project at work and I put off starting until I had finished it. My biopsy showed mild inflammation and no fibrosis and my counts were also over 1,000,000. The particular test I took only measured up to 1,000,000, so all I know for sure is that I was over that, but not by how much. My genotype was 1B which is one of the hardest to treat (along with 1A), and also the most common among Americans. I had a successful treatment and am still undetectable after 3+ years.

-dz-Rhonda <rhondahudson@...> wrote:

Well my Dr.'s appt. was not very productive. I told him I wanted to put offtreatment until September when my kids are back in school because my husbandis going out of town for work until then. He agreed that was a good idea as"this is difficult treatment and you need a support system". So there wasn'tanything to discuss after that.Now we have been in this town for a year and I have no friends here{I amalways surprised at how stand-offish people are here} and no family in thestate at all. So this is one of those times when you feel very alone andisolated.The good news being the biopsy revealed no damage to my liver but it isinflamed.My viral count was high 1.15 million or something like that. He didn't yethave the results of the geno{?} type so while I was there the assistantcalled the lab and asked for it. They did have the

results but hadn't sentthem over to the Dr. yet. The assistant was curious as to WHY NOT but ofcourse never got that answered. The lab was going to fax over the resultswhich she said could take a while so she told me to go home and she wouldhave the Dr. call me.Mind you one of the blood tests that was done was botched by the lab andinstead of saying "hey we botched the test and need more blood" they passedit off as not having got a blood sample to do the test in the first place.This was discovered when I was called to do a blood draw and I said "again!"So after a bit of investigating it was revealed the lab was lying. Which ofcourse boosts my confidence in them a whole bunch!!The Dr. hasn't called me yet so everybody here now knows what I know :)Have a great day you guys,Rhonda

July 28, 2004

Good for you. I'm hoping to be able to say the thing about mine some day

How long was your treatment if I may ask? I'm guessing this will be a year?

Rhonda

Re: [ ] doctor visit

> Sounds much like my beginning. I had a big project at work and I put off

starting until I had finished it. My biopsy showed mild inflammation and no

fibrosis and my counts were also over 1,000,000. The particular test I took

only measured up to 1,000,000, so all I know for sure is that I was over

that, but not by how much. My genotype was 1B which is one of the hardest to

treat (along with 1A), and also the most common among Americans. I had a

successful treatment and am still undetectable after 3+ years.

> -dz-

>

> Rhonda <rhondahudson@...> wrote:

> Well my Dr.'s appt. was not very productive. I told him I wanted to put

off

> treatment until September when my kids are back in school because my

husband

> is going out of town for work until then. He agreed that was a good idea

as

> " this is difficult treatment and you need a support system " . So there

wasn't

> anything to discuss after that.

> Now we have been in this town for a year and I have no friends here{I am

> always surprised at how stand-offish people are here} and no family in the

> state at all. So this is one of those times when you feel very alone and

> isolated.

> The good news being the biopsy revealed no damage to my liver but it is

> inflamed.

> My viral count was high 1.15 million or something like that. He didn't yet

> have the results of the geno{?} type so while I was there the assistant

> called the lab and asked for it. They did have the results but hadn't sent

> them over to the Dr. yet. The assistant was curious as to WHY NOT but of

> course never got that answered. The lab was going to fax over the results

> which she said could take a while so she told me to go home and she would

> have the Dr. call me.

> Mind you one of the blood tests that was done was botched by the lab and

> instead of saying " hey we botched the test and need more blood " they

passed

> it off as not having got a blood sample to do the test in the first place.

> This was discovered when I was called to do a blood draw and I said

" again! "

> So after a bit of investigating it was revealed the lab was lying. Which

of

> course boosts my confidence in them a whole bunch!!

> The Dr. hasn't called me yet so everybody here now knows what I know

> Have a great day you guys,

> Rhonda

>

July 28, 2004

48 weeks to be precise.. -dz-Rhonda <rhondahudson@...> wrote:

Good for you. I'm hoping to be able to say the thing about mine some day :)How long was your treatment if I may ask? I'm guessing this will be a year?Rhonda Re: [ ] doctor visit> Sounds much like my beginning. I had a big project at work and I put offstarting until I had finished it. My biopsy showed mild inflammation and nofibrosis and my counts were also over 1,000,000. The particular test I tookonly measured up to 1,000,000, so all I know for sure is that I was overthat, but not by how much. My genotype was 1B which is one of the hardest totreat (along with 1A), and also the most common among Americans. I had asuccessful treatment

and am still undetectable after 3+ years.> -dz->> Rhonda <rhondahudson@...> wrote:> Well my Dr.'s appt. was not very productive. I told him I wanted to putoff> treatment until September when my kids are back in school because myhusband> is going out of town for work until then. He agreed that was a good ideaas> "this is difficult treatment and you need a support system". So therewasn't> anything to discuss after that.> Now we have been in this town for a year and I have no friends here{I am> always surprised at how stand-offish people are here} and no family in the> state at all. So this is one of those times when you feel very alone and> isolated.> The good news being the biopsy revealed no damage to my liver but it is> inflamed.> My viral count was high 1.15 million or something like that. He didn't yet> have the results of the geno{?}

type so while I was there the assistant> called the lab and asked for it. They did have the results but hadn't sent> them over to the Dr. yet. The assistant was curious as to WHY NOT but of> course never got that answered. The lab was going to fax over the results> which she said could take a while so she told me to go home and she would> have the Dr. call me.> Mind you one of the blood tests that was done was botched by the lab and> instead of saying "hey we botched the test and need more blood" theypassed> it off as not having got a blood sample to do the test in the first place.> This was discovered when I was called to do a blood draw and I said"again!"> So after a bit of investigating it was revealed the lab was lying. Whichof> course boosts my confidence in them a whole bunch!!> The Dr. hasn't called me yet so everybody here now knows what I know > Have a great day you

guys,> Rhonda>

July 28, 2004

Ah! Almost a year

Thank you Dave

Rhonda

Re: [ ] doctor visit

>

> > Sounds much like my beginning. I had a big project at work and I put off

> starting until I had finished it. My biopsy showed mild inflammation and

no

> fibrosis and my counts were also over 1,000,000. The particular test I

took

> only measured up to 1,000,000, so all I know for sure is that I was over

> that, but not by how much. My genotype was 1B which is one of the hardest

to

> treat (along with 1A), and also the most common among Americans. I had a

> successful treatment and am still undetectable after 3+ years.

> > -dz-

> >

> > Rhonda <rhondahudson@...> wrote:

> > Well my Dr.'s appt. was not very productive. I told him I wanted to put

> off

> > treatment until September when my kids are back in school because my

> husband

> > is going out of town for work until then. He agreed that was a good idea

> as

> > " this is difficult treatment and you need a support system " . So there

> wasn't

> > anything to discuss after that.

> > Now we have been in this town for a year and I have no friends here{I am

> > always surprised at how stand-offish people are here} and no family in

the

> > state at all. So this is one of those times when you feel very alone and

> > isolated.

> > The good news being the biopsy revealed no damage to my liver but it is

> > inflamed.

> > My viral count was high 1.15 million or something like that. He didn't

yet

> > have the results of the geno{?} type so while I was there the assistant

> > called the lab and asked for it. They did have the results but hadn't

sent

> > them over to the Dr. yet. The assistant was curious as to WHY NOT but of

> > course never got that answered. The lab was going to fax over the

results

> > which she said could take a while so she told me to go home and she

would

> > have the Dr. call me.

> > Mind you one of the blood tests that was done was botched by the lab and

> > instead of saying " hey we botched the test and need more blood " they

> passed

> > it off as not having got a blood sample to do the test in the first

place.

> > This was discovered when I was called to do a blood draw and I said

> " again! "

> > So after a bit of investigating it was revealed the lab was lying. Which

> of

> > course boosts my confidence in them a whole bunch!!

> > The Dr. hasn't called me yet so everybody here now knows what I know

> > Have a great day you guys,

> > Rhonda

> >

>

July 29, 2004

If your genotype happens to be a 2, you may get by with a 24 week course, depending on the doctor. -dz-Rhonda <rhondahudson@...> wrote:

Ah! Almost a year :)Thank you DaveRhonda Re: [ ] doctor visit>>> > Sounds much like my beginning. I had a

big project at work and I put off> starting until I had finished it. My biopsy showed mild inflammation andno> fibrosis and my counts were also over 1,000,000. The particular test Itook> only measured up to 1,000,000, so all I know for sure is that I was over> that, but not by how much. My genotype was 1B which is one of the hardestto> treat (along with 1A), and also the most common among Americans. I had a> successful treatment and am still undetectable after 3+ years.> > -dz-> >> > Rhonda <rhondahudson@...> wrote:> > Well my Dr.'s appt. was not very productive. I told him I wanted to put> off> > treatment until September when my kids are back in school because my> husband> > is going out of town for work until then. He agreed that was a good idea> as> > "this is difficult treatment and you need a support system". So

there> wasn't> > anything to discuss after that.> > Now we have been in this town for a year and I have no friends here{I am> > always surprised at how stand-offish people are here} and no family inthe> > state at all. So this is one of those times when you feel very alone and> > isolated.> > The good news being the biopsy revealed no damage to my liver but it is> > inflamed.> > My viral count was high 1.15 million or something like that. He didn'tyet> > have the results of the geno{?} type so while I was there the assistant> > called the lab and asked for it. They did have the results but hadn'tsent> > them over to the Dr. yet. The assistant was curious as to WHY NOT but of> > course never got that answered. The lab was going to fax over theresults> > which she said could take a while so she told me to go home and

shewould> > have the Dr. call me.> > Mind you one of the blood tests that was done was botched by the lab and> > instead of saying "hey we botched the test and need more blood" they> passed> > it off as not having got a blood sample to do the test in the firstplace.> > This was discovered when I was called to do a blood draw and I said> "again!"> > So after a bit of investigating it was revealed the lab was lying. Which> of> > course boosts my confidence in them a whole bunch!!> > The Dr. hasn't called me yet so everybody here now knows what I know > > Have a great day you guys,> > Rhonda> >>>>

July 29, 2004

Hi you guys,

I just spoke with my Dr. and he had good news for me. I have geno type 2B

and when I start my treatment in September it will be the 24 week treatment.

Yes! That was music to my ears

Rhonda

Re: [ ] doctor visit

> >

> > > Sounds much like my beginning. I had a big project at work and I put

off

> > starting until I had finished it. My biopsy showed mild inflammation and

> no

> > fibrosis and my counts were also over 1,000,000. The particular test I

> took

> > only measured up to 1,000,000, so all I know for sure is that I was over

> > that, but not by how much. My genotype was 1B which is one of the

hardest

> to

> > treat (along with 1A), and also the most common among Americans. I had a

> > successful treatment and am still undetectable after 3+ years.

> > > -dz-

> > >

> > > Rhonda <rhondahudson@...> wrote:

> > > Well my Dr.'s appt. was not very productive. I told him I wanted to

put

> > off

> > > treatment until September when my kids are back in school because my

> > husband

> > > is going out of town for work until then. He agreed that was a good

idea

> > as

> > > " this is difficult treatment and you need a support system " . So there

> > wasn't

> > > anything to discuss after that.

> > > Now we have been in this town for a year and I have no friends here{I

am

> > > always surprised at how stand-offish people are here} and no family in

> the

> > > state at all. So this is one of those times when you feel very alone

and

> > > isolated.

> > > The good news being the biopsy revealed no damage to my liver but it

is

> > > inflamed.

> > > My viral count was high 1.15 million or something like that. He didn't

> yet

> > > have the results of the geno{?} type so while I was there the

assistant

> > > called the lab and asked for it. They did have the results but hadn't

> sent

> > > them over to the Dr. yet. The assistant was curious as to WHY NOT but

of

> > > course never got that answered. The lab was going to fax over the

> results

> > > which she said could take a while so she told me to go home and she

> would

> > > have the Dr. call me.

> > > Mind you one of the blood tests that was done was botched by the lab

and

> > > instead of saying " hey we botched the test and need more blood " they

> > passed

> > > it off as not having got a blood sample to do the test in the first

> place.

> > > This was discovered when I was called to do a blood draw and I said

> > " again! "

> > > So after a bit of investigating it was revealed the lab was lying.

Which

> > of

> > > course boosts my confidence in them a whole bunch!!

> > > The Dr. hasn't called me yet so everybody here now knows what I know

> > > Have a great day you guys,

> > > Rhonda

> > >

> >

July 30, 2004

Well, you're off to a good start. I believe that type 2's have a higher success rate, which I suppose has something to do with the shorter treatment. Now all you have to do is KICK ASS!!!! It's hard to say that anybody is lucky, having to go through this trial, but let's just say that it could be a lot worse!! Your outlook for a successful treatment is very good. -dz-Rhonda <rhondahudson@...> wrote:

Hi you guys,I just spoke with my Dr. and he had good news for me. I have geno type 2Band when I start my treatment in September it will be the 24 week treatment.Yes! That was music to my ears :)Rhonda Re: [ ] doctor visit> >> >> > > Sounds much like my beginning. I had a big project at work and I putoff> > starting until I had finished it. My biopsy showed mild inflammation and> no> > fibrosis and my counts were also over 1,000,000. The particular test I>

took> > only measured up to 1,000,000, so all I know for sure is that I was over> > that, but not by how much. My genotype was 1B which is one of thehardest> to> > treat (along with 1A), and also the most common among Americans. I had a> > successful treatment and am still undetectable after 3+ years.> > > -dz-> > >> > > Rhonda <rhondahudson@...> wrote:> > > Well my Dr.'s appt. was not very productive. I told him I wanted toput> > off> > > treatment until September when my kids are back in school because my> > husband> > > is going out of town for work until then. He agreed that was a goodidea> > as> > > "this is difficult treatment and you need a support system". So there> > wasn't> > > anything to discuss after that.> > > Now we have been in this town

for a year and I have no friends here{Iam> > > always surprised at how stand-offish people are here} and no family in> the> > > state at all. So this is one of those times when you feel very aloneand> > > isolated.> > > The good news being the biopsy revealed no damage to my liver but itis> > > inflamed.> > > My viral count was high 1.15 million or something like that. He didn't> yet> > > have the results of the geno{?} type so while I was there theassistant> > > called the lab and asked for it. They did have the results but hadn't> sent> > > them over to the Dr. yet. The assistant was curious as to WHY NOT butof> > > course never got that answered. The lab was going to fax over the> results> > > which she said could take a while so she told me to go home and she> would> > >

have the Dr. call me.> > > Mind you one of the blood tests that was done was botched by the laband> > > instead of saying "hey we botched the test and need more blood" they> > passed> > > it off as not having got a blood sample to do the test in the first> place.> > > This was discovered when I was called to do a blood draw and I said> > "again!"> > > So after a bit of investigating it was revealed the lab was lying.Which> > of> > > course boosts my confidence in them a whole bunch!!> > > The Dr. hasn't called me yet so everybody here now knows what I know:)> > > Have a great day you guys,> > > Rhonda> > >> >> >> >

July 30, 2004

Glad to have you back, Jan. I was wondering why I didn't get chastised for putting an apostrophe in Ya'all. Sorry to hear you are having problems, but then again good your liver and kidneys are good.

I remember well those "funny" people down in the French Quarter. I wandered a little too far off Bourbon Street late one night and met a lovely "lady" (I was still single) Somehow we ended up in the men's room together, making plans.... and her "brother" blasted in with a knife and attempted to rob me. I had just gone back up north for a visit, came in on the train from Chicago, and had nothing left but a couple of travelers checks. The guy gave me everything back, apologized to me, and begged me not to "tell on him". My ID showed I lived in town and he wasn't expecting that. (mardi gras time). When I walked out of the men's room, the bartender asked me what happened and I told him. Apparently he knew this guy. He bought me drinks until I left, and the guy that tried to rob me actually followed me onto the ferry accross the river, all the while begging me not to turn him in. I didn't. I figured he was in plenty of hot water with the tavern owner. The police look the other way

during the mardi gras, when it comes to hookers and such, as long as there is no other trouble.

As you probably have figured, the young lady, was in it for the money, and she was trying to decide if she could accept a travelers check or not, when her "brother" busted in on us.

-dz-Janet <jfw4359@...> wrote:

Hi everyone..I am back from New Orleans..It was a blast..Iwent for 4 days..came home and went back for overnite ot bring the huby back to the airport..Went to the Dr for my regular Dr visit and found out I have an enlarged heart..HIGH CHOLESTEROL..low folic acid..REAL LOW..So I had to do a stress test and couldn't pass that so they have to do some kind of IV test and seeif there is any blockage and how much..Boy ou guess I am gonna enjoy that!! NOT!!! He did say my liver and kidneys were good thogh..He putme on cholesterol meds that start with a C..I just started it..Gotta have that test Monday..New Orleans wore me right out but it was so much fun..It was hot..Got the hell scared outof me by soem of those funy people outhtere..I have so much to say aboutit and pics to send but will do that tomorrow..It's 11:39 pm here and I haven't stopped in 7 days..I missed all of you thoguh...

July 30, 2004

Congrats Rhonda!! I can't wait to see what genotype I have.

Appointment time is coming up next Tuesday and I'm sure they will

order the test. Then there is the exciting two to three week wait!

Yipee!!

Hang in there,

Barbara

> > > > Well my Dr.'s appt. was not very productive. I told him I

wanted to

> put

> > > off

> > > > treatment until September when my kids are back in school

because my

> > > husband

> > > > is going out of town for work until then. He agreed that was

a good

> idea

> > > as

> > > > " this is difficult treatment and you need a support system " .

So there

> > > wasn't

> > > > anything to discuss after that.

> > > > Now we have been in this town for a year and I have no

friends here{I

> am

> > > > always surprised at how stand-offish people are here} and no

family in

> > the

> > > > state at all. So this is one of those times when you feel

very alone

> and

> > > > isolated.

> > > > The good news being the biopsy revealed no damage to my

liver but it

> is

> > > > inflamed.

> > > > My viral count was high 1.15 million or something like that.

He didn't

> > yet

> > > > have the results of the geno{?} type so while I was there the

> assistant

> > > > called the lab and asked for it. They did have the results

but hadn't

> > sent

> > > > them over to the Dr. yet. The assistant was curious as to

WHY NOT but

> of

> > > > course never got that answered. The lab was going to fax

over the

> > results

> > > > which she said could take a while so she told me to go home

and she

> > would

> > > > have the Dr. call me.

> > > > Mind you one of the blood tests that was done was botched by

the lab

> and

> > > > instead of saying " hey we botched the test and need more

blood " they

> > > passed

> > > > it off as not having got a blood sample to do the test in

the first

> > place.

> > > > This was discovered when I was called to do a blood draw and

I said

> > > " again! "

> > > > So after a bit of investigating it was revealed the lab was

lying.

> Which

> > > of

> > > > course boosts my confidence in them a whole bunch!!

> > > > The Dr. hasn't called me yet so everybody here now knows

what I know

>

> > > > Have a great day you guys,

> > > > Rhonda

> > > >

> > >

July 30, 2004

oh yes the waiting is the best part isn't it? Not.

I went to my Dr. Tuesday to find out he did not have the results of my geno

type. A call to the lab revealed they had the results but had not sent them.

So it wasn't until yesterday that I got the call from my Dr. Of course those

extra two days waiting I wasn't stressing at all-lol

Rhonda

[ ] Re: doctor visit

> Congrats Rhonda!! I can't wait to see what genotype I have.

> Appointment time is coming up next Tuesday and I'm sure they will

> order the test. Then there is the exciting two to three week wait!

> Yipee!!

>

> Hang in there,

> Barbara

>

> > > > > Well my Dr.'s appt. was not very productive. I told him I

> wanted to

> > put

> > > > off

> > > > > treatment until September when my kids are back in school

> because my

> > > > husband

> > > > > is going out of town for work until then. He agreed that was

> a good

> > idea

> > > > as

> > > > > " this is difficult treatment and you need a support system " .

> So there

> > > > wasn't

> > > > > anything to discuss after that.

> > > > > Now we have been in this town for a year and I have no

> friends here{I

> > am

> > > > > always surprised at how stand-offish people are here} and no

> family in

> > > the

> > > > > state at all. So this is one of those times when you feel

> very alone

> > and

> > > > > isolated.

> > > > > The good news being the biopsy revealed no damage to my

> liver but it

> > is

> > > > > inflamed.

> > > > > My viral count was high 1.15 million or something like that.

> He didn't

> > > yet

> > > > > have the results of the geno{?} type so while I was there the

> > assistant

> > > > > called the lab and asked for it. They did have the results

> but hadn't

> > > sent

> > > > > them over to the Dr. yet. The assistant was curious as to

> WHY NOT but

> > of

> > > > > course never got that answered. The lab was going to fax

> over the

> > > results

> > > > > which she said could take a while so she told me to go home

> and she

> > > would

> > > > > have the Dr. call me.

> > > > > Mind you one of the blood tests that was done was botched by

> the lab

> > and

> > > > > instead of saying " hey we botched the test and need more

> blood " they

> > > > passed

> > > > > it off as not having got a blood sample to do the test in

> the first

> > > place.

> > > > > This was discovered when I was called to do a blood draw and

> I said

> > > > " again! "

> > > > > So after a bit of investigating it was revealed the lab was

> lying.

> > Which

> > > > of

> > > > > course boosts my confidence in them a whole bunch!!

> > > > > The Dr. hasn't called me yet so everybody here now knows

> what I know

> >

> > > > > Have a great day you guys,

> > > > > Rhonda

> > > > >

> > > >

November 18, 2004

---

Hi ,

Thanks so much for the message-I'll try and find that website and

rate that blonde Dr. I did tell her that I had already told all my

family members what I thought about her...I'm sure she has heard that

before. Thanks again and God Bless, Sue in Michigan.

In , " lbschroeder "

<lbschroeder@e...> wrote:

>

> Sue, I wish I had the address for the site, but I wrote in

yesterday and posted a website that the National Psoriasis Foundation

has set up, to rate your doctors. It is all done with total

privacy. You can let your " pretty blonde doctor " know what her

patient really thinks of her! And you can rate your rheumy and say

the good things. They turn this over to the doctors, so they will

find out what their patients really feel about the quality of

service. Good luck.

>

> in Poulsbo, WA.

>

January 23, 2005

Hi

Have your E2 checked if you haven't already. It could be too

high...too much T to E2 conversion. This can be brought down with

Arimidex or DIM.

Dave K.

>

> I go back to see my doctor on thursday. Been on trt(shots) since

> first part of Sept. Started off at 200mgs. every two weeks and now

up

> to 300 every two weeks. Still feel like crap. What do I need to

do?

> What tests do I need to ask my doctor to run? Is there anything

else

> I can be taking to help me? Do I give up the shots? I feel worse

on

> the 300 than I did on the 200. I just want to feel better. Also is

> there anyone in the Roanoke, Va. area. Just want to make sure I`m

> going to the right doctor to treat me. Thanks.

January 23, 2005

Hi rc,

I hear from others that Propecia-related hormone imbalances

take a long time to fix. Hang in there. I don't have personal

experience with finasteride. It would be a good idea to check my

suggestions with someone who does.

Essential tests:

* Total Testosterone

* Free Testosterone

* Estradiol (E2)

* DHT

* DHEA-S

* FSH

* IGF-1

* LH

* SHBG

* Prolactin

* PSA

(and Semen Analysis?)

I think you're right about needing another doc. Minimum

qualification (if possible): He/she will have successfully treated

at least one man before you for Propecia-related hypogonadism.

Speculation: I would think that stimulation therapy to restart the

system would be better than replacement therapy for life. So the

new doc should know hCG therapy.

Try looking via:

American College for Advancement in Medicine (ACAM). Look for

docs with " HRT " in their practice codes.

http://www.acam.org/dr_search/index.php

or

Life Extension Foundation, List of Innovative Doctors:

http://www.lef.org/doctors/directoryofdoctors03.html

Let us know if you can't find one there.

Bruce

>

> I go back to see my doctor on thursday. Been on trt(shots)

since

> first part of Sept. Started off at 200mgs. every two weeks and

now up

> to 300 every two weeks. Still feel like crap. What do I need to

do?

> What tests do I need to ask my doctor to run? Is there anything

else

> I can be taking to help me? Do I give up the shots? I feel worse

on

> the 300 than I did on the 200. I just want to feel better. Also is

> there anyone in the Roanoke, Va. area. Just want to make sure

I`m

> going to the right doctor to treat me. Thanks.

January 23, 2005

I went from 250 every two weeks to 200 every ten days and felt better

for it. Might want to try every 10 days.

Mark

January 26, 2005

Hi,

The form of testosterone therapy is your primary concern.

Getting shots gives you spurts of T and your body reacts to this big

change in hormone each time. There is a strong chance your body will

convert T to E2 causing you other problems.

I have been receiving TRT via 20 hormone pellets every 4 months since

1991. These are inserted under the skin in the doctors office using

local anesthesia and a trocar surgical tool.

My endocrinologist is Dr. R. Don Gambrell, Augusta GA and will answer

questions. He may also be able to suggest a doctor that provides

hormone pellets which dissolve gradually under the skin in 4 months

needing only another visit to the doctor for more pellets at a typical

cost of $450 or $1350/yr.

His web page is:

http://www.members.aol.com/gambr999/

Hormone pellets allow the T level to be safely moved and maintained at

the high normal levels, around 900.

ernestnolan

>

> I go back to see my doctor on thursday. Been on trt(shots) since

> first part of Sept. Started off at 200mgs. every two weeks and now up

> to 300 every two weeks. Still feel like crap. What do I need to do?

> What tests do I need to ask my doctor to run? Is there anything else

> I can be taking to help me? Do I give up the shots? I feel worse on

> the 300 than I did on the 200. I just want to feel better. Also is

> there anyone in the Roanoke, Va. area. Just want to make sure I`m

> going to the right doctor to treat me. Thanks.

January 27, 2005

>

> Went to my doctor today. Told him I`m still not feeling good. I`ve

> been taking 300mgs of test. depot every two weeks. I ask him about

E2

> and he said he never heard of it. I also asked him if he was

treating

> others with the same problems I had and he said close to 100. I

told

> him I just wanted to start feeling better he said he wanted to up

my

> test to 400mgs. every two weeks. What do you think. Is this guy a

> quack or what? If you were me would you look for a new doctor?

What

> is 400mgs. going to do to me or for me? Thanks for any help or

input.

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

Well, First one loses about 30% of injectable depo, or better to

say one absorbs 70% usable testosterone. So, at present you are

injecting 300mg times 70% equals 210mg of real T, divided by 14 days

in your present two week routine equals 15mg of T a day. This is

really an optimum amount in my opinion even for total replacement.

I would recommend that you inject half that much every seven days to

keep the big spike and tapering off from raising hell. Now, if you

go to 400mg that times 70% equals 280, divided by 14 days equals

20mg of T a day. This is a LOT, in my opinion. There are two

possibilities, one being that your T to estrogen RATIO is off, in

that you really have enough T, but perhaps your estrogen is so high

it is offseting the T's effect. Get E2 blood tested right away,

insist on it , tell him it is your body and your money and no harm

or consequence to him so why not? Or, you have a problem elsewhere

as to why you feel lousy that may not have anything to do with T or

E, perhaps a less than optimum thyroid, get that tested also, or

conditions not medical that make you feel lousy, can't tell.

best

norton

January 27, 2005

Hi,

If I were you I would look for a new doctor.

Refer back to Message 21293

/message

/21293

Was his decision to increase dose based on any blood tests?

Has he ordered more tests?

Bruce

>

> Went to my doctor today. Told him I`m still not feeling good. I`ve

> been taking 300mgs of test. depot every two weeks. I ask him

about E2

> and he said he never heard of it. I also asked him if he was

treating

> others with the same problems I had and he said close to 100.

I told

> him I just wanted to start feeling better he said he wanted to up

my

> test to 400mgs. every two weeks. What do you think. Is this guy

a

> quack or what? If you were me would you look for a new

doctor? What

> is 400mgs. going to do to me or for me? Thanks for any help or

input.

January 11, 2006

In a message dated 1/12/2006 2:40:37 AM Eastern Standard Time, andracristina007@... writes:

Hi everyone.

Today we had a doctor appt. for Matt. His doctor told us that it's

possible to outgrow the flatness but he will talk with a specialist

about using a helmet for Matt and he will give us a call.

What helmet is the best? How can you choose one? How can you know

which helmet fits for your baby? What is the next step??

First step is getting a catscan. Make sure that is the probelm. Then would be talking to a plastic surgeon have him give you his opinion tthen get the helmet..

I started out with craniosynostosis so I might have a few different views then everyone else = )

U'U'U'U'U'U'U

believe in the power of prayer

__

\.| |./

`.__\| |/__.'

---|__|....|__|---

..'..||__||..`.

/|| |.\

| |

|__|

.....-"`' `"`'`` `"-.jmc

praying for

U'U'U'U'U'U'U

cappskids.org

January 11, 2006

In a message dated 1/12/2006 2:40:37 AM Eastern Standard Time, andracristina007@... writes:

Hi everyone.

Today we had a doctor appt. for Matt. His doctor told us that it's

possible to outgrow the flatness but he will talk with a specialist

about using a helmet for Matt and he will give us a call.

What helmet is the best? How can you choose one? How can you know

which helmet fits for your baby? What is the next step??

First step is getting a catscan. Make sure that is the probelm. Then would be talking to a plastic surgeon have him give you his opinion tthen get the helmet..

I started out with craniosynostosis so I might have a few different views then everyone else = )

U'U'U'U'U'U'U

believe in the power of prayer

__

\.| |./

`.__\| |/__.'

---|__|....|__|---

..'..||__||..`.

/|| |.\

| |

|__|

.....-"`' `"`'`` `"-.jmc

praying for

U'U'U'U'U'U'U

cappskids.org

January 12, 2006

My Bella was banded at Cranial Tech last week. Before we made the

decision, like many other parents we did our research. First, call

your insurance to see if they will cover it, if so, how much. Then,

see whether or not any providers are in your area. My suggestion

would be to check out both a helmet and band place. For us, Cranial

Tech seemed more professionally trained, were great in working with

Bella and I liked how thorough they were in the process of getting her

measurements and band ready. One other thing that I liked was that

the adjustments are more frequent than if we would have chosen a band.

To me, it took the worry away of me having to make the decision if

she needed to go in before her scheduled appt.

But, overall, I think the end result will be the same - because there

are helmet and band users on this site and we all seem to go through a

lot of the same issues. To be honest a big factor for us was the

personell of Cranial Tech - they are GREAT to work with and I truly

feel like they care about my baby.

It's a big decision - another thing that helped was finding this

support group - I asked a lot of questions before making the final

decision.

About outgrowing the flatness - I didn't want to take the chance - and

didn't want to have to answer Bella's questions when she's a teenager

as to why I didn't fix the problem when I had the opportunity.

She doesn't even act like she knows she's wearing anything - which

takes away some of the guilt for going through with it!

Keep us posted, and may you find peace in your decision.

Sincerely,

April mom to Bella, 6 1/2 months old, polis, land

>

> Hi everyone.

> Today we had a doctor appt. for Matt. His doctor told us that it's

> possible to outgrow the flatness but he will talk with a specialist

> about using a helmet for Matt and he will give us a call.

> What helmet is the best? How can you choose one? How can you know

> which helmet fits for your baby? What is the next step??

>

> Talking about the next step... tonight when baby was sleeping in my

> arms, slowly I massaged his head and it's seems a little tiny bit

> different. Is it possible or am I just too tired?

> This subject is very new to me..just last night I found out about it

> so I would apreciate any help from you.

> Thank you

>

January 12, 2006