To Preciousness and Other Posts

[NYgirl]

I have been trying to find contact information for Dr. J for some time now but just CANT get it for some reason (online I just can't find the RIGHT number).

I need a second opinion on whether I should do ANOTHER 30 weeks of treatment and my doctor advised me to go to Dr. J.  Of course he's out on vacation now and I can't get him - when I saw you post down there I knew I had to ask.

Can you tell me what listing I can call in information or something so I can get an appt?

I am on week 36 and running out of time on this decision.

You are tremendously lucky to be going to him.  I want to SO MUCH = and with my odd circumstances my doctor wants him to take over my treatment now.

Thanks so much.

(Sorry guys...I hate to use a thread but NEED to find this man once and for all I tell ya.  The other "expert" looks good but he AINT DR JACOBSEN.

[preciousones]

Sorry for my late reply! I am glad that someone could give you Dr. J's number.  I have his email address too.  He is truly wonderful. He does not take any insurance but it is well worth the visit. Good luck to you all

[silverangel]

I'm sorry...It's hypothyroidim with Hashimoto Thyroiditis. That's when your immune system attacks your thyroid. Caused by Interferon Alfa. Hence...more SX

[NYgirl]

Well I am on synthroid too an so now I'm confused because I am HYPO and you are HYPER...why would they have us both on the same med at about the same dose?

don't understand any of this at all I really dont but I'd think we needed different things to level it all out wouldn't you?

[silverangel]

My TSH is high, but my T3 is low...He said I'm hypo with graves disease.
Silver

[can-do-man]

Thank you for you kind words. Your a sweet person.

[silverangel]

Glad to hear you got the phone number. Is he's office close to you?  Saw MD today, He started me on synthroid 100mcg daily and cytomel 50mcg daily. The SX are trouble sleeping, (already have that) and shakiness spells...I figure maybe the shaking will give me some entergy I so need!  LOL  MD said "Yes, My number are very high...people are usually treated when levels are 10-20. Mine is 82, that's the TSH, also said T3 is low.  

To can-do-man: Thank you for always putting a smile on my face. Even if I don't always comment, I try to come and read some threads. Your humor is so refreshing.

[Pdilly]

You get your bx next week?  I have mine tomorrow.  I am a little nervous this afternoon.  Did the advanced checkin and I guess I am scheduled for 9am for the bx.  I sure hope they don't find anything bad.  I know everyone says you will be alright but there is still that doubt.

[jmjm530]

Besides giving you the phone number, I also made a few suggestions. Briefly, be prepared for some negativity from the gatekeeper who is usually the one who answeres the phone and/or the appointment secretary. In other words, don't be surprised if they say he's booked for the next three months, etc. They ALWAYS make room for exceptions.

So all that means is that you have to ask to speak to next in line which might be the office manager, or maybe one of his nurses. If that doesn't get you in, ask to speak to the doctor himself, telling them it's somewhat urgent. Your pitch basically is that you're mid-treatment and can't wait several months for an appointment because then it all becomes adademic. Say it nicely of course but be persistent. Hope you read this -- one suggestion is to write down the threads where you ask questions, so you can find the answers the next day once they become buried. All the best.

-- Ji

[fishdoc]

NYG, I'm confused, I thought Can do was the resident bootie catcher..... OK, I reread, its cootie catcher...

[NYgirl]

Nope I thought I was on hold with him last week but it was The Center for Liver Disease in NYC and they had never HEARD of Dr. J.  I spent like a half hour on hold with them then talked to the lady for a while and while they sounded good - if they all don't know who Dr. J is well.....

I put it into contacts here in the computer and when boss is out tomorrow I am calling.  End of story. Since I need resolution I have to.

and I never noticed you put that phone number in! I simply have to get that home pc back  up = I miss everything during the night and it's lonely just sitting there with my remote and a fudgicle and nobody to laugh with :)

[jmjm530]

I'm giving up on you. LOL. Didn't you say you were "on hold" with Dr. J. two weeks ago. I've given you his number at least three times :) Methinks you don't want to face the music. LOL. Hey, I've been there myself -- and to a certain degree I'm there right now with certain health issues -- but with the Hep C thing, I did step up to the plate in terms of exploring my options both with research and althernate medical opinions. I think you should too.

-- Jim

[Mister beagle bailey]

Your HGB going up less then a week after stopping the riba was great, hope I'm that lucky.  I had 60,000 units today of procrit and will have another 60,000 on Mon.  Having my HGB tested on Mon ,5 days after the last one will show how well the procrit is holding.
I see what you mean about just dropping just the one pill for me that would be in the morning.  I'll see what happens on Mon. the day sfter my 23rd shot with the HGB.  Mon. will start the last 2 weeks on the riba, so dropping 1 pill may not make a difference at that point.

Beagle

[GoofyDad]

That would cut your total dose in half, correct? That would seem extreme to me. I would talk to the Doc before doing anything, but my experience is that dropping by 200 mg a day would make a difference within a week or so. That's dropping just the morning or evening pill. I'd drop on the one where I take the smallest meal.

[Mister beagle bailey]

I'm now on 800 of the riba a day.  Do you think dropping the riba by 1 pill in the morning and in the evening would help?

Beagle

[GoofyDad]

It took a 5 day procrit cycle to pull me out of the the hgb 7's. Sorry to say, it took a few weeks to see the results. At one point I dropped from 1,200 to 1,000 mg of riba, and the hgb effects were almost immediate. I stopped the procrcit at hgb 11 - less than a week after stopping the riba.

The studies that favor shorter tx used weight based riba dosing. At 800 mg, I would stick for the whole ride. If you need to you could drop a riba pill.

Good luck.

[Mister beagle bailey]

Deb/ALL/ I knew that would make you happy and glad the dr went for it.  I don't understand why I have to be the one to tell the dr, let's try this, etc.  Then he calls me back and says ok lets do it.  This seems to be the name of the game since on tx.
I feel like saying to him, hey your the dr and I'm the patient, you tell me what to do.
If not for this board, I don't know what would have happened with me and treatment.  I HAVE TO SAT THANK YOU TO ALL for your help and wisdom.

FLGUY/  Your next, will be waiting to here what happens with your appointment next week in Gainsville.  I wish the he*l someone would get a better drug out there and fast with hardly  no sxs and shorter duration of treatment.

Beagle

[ohgreat]

Heck yeah I'm going to treat.  I am sort of the same mindset of NYGirl, I just want it out of me.

Age 34, 175 lbs.
Geno 3a
VL 1.2
bx stage/grade = ?? (I take that this Monday)
dont drink/drug
at the most had it for 15 years, prob 6

I guess it will depend on my bx.  But I am in a great place to treat with current meds.

pros.
+Age / I'm relatively young and just barely in the age group that clears often.
+3a
+seem to be good body weight
+I am lucky enough to be working from home for the next 4-6 months.
+learned from the best! (you guys/gals!)

cons.
-Age / New drugs on horizon
-Male (3a females seem to do better than males)
-Possible Stetosis (3a's have higher levels of stetosis and I can physically feel my hardened swollen liver, meaning good chance I have fatty liver...damn that bottled Southern Comfort...)
-Not really insured that well..but I could do it..

[FlGuy]

Glad you made that decision. South Florida needs once less hcv patient, and that's you this year. I will be next year's.

[NYgirl]

Beagle

Well FINALLY!  It just made no sense at ALL to have not done this earlier if you ask me.  Twice a week helped me as where once a week did nothing but keep me the same. When Iwent on twice  zoomed up s FAST I was almost at 16 in no time.

I know you are on every five days = but that is much closer to a twice a week so now I am very happy! Very happy indeed. I REALLY think this is exactly what would have helped you much earlier, ya know?

Of course I always judge everything by how it went with me LOL I am the center of the universe in my own head it would seem ;)

[Mister beagle bailey]

I'm going all the way now that I know I can get the procrit every 5 days.  But if I have a problem the last week of tx, I'll cut the riba after the 24th shot.  Like many have pointed out that the HGB is affected by the riba not the shot.

Ohgreat -- Are you going to treat, if so when? What geno type are you?

Beagle

[Mister beagle bailey]

BOZO HAIR, LOL LOL

What ever procrit I have left that I don't use I want to donate it to someone who needs it and has no ins.  I don't want the dr keeping it and then charging someone else for it, do you know what I mean?  
It's so true the knowledge we get from this board and because of you I never got the riba rash because I started using the GOLD BOND before starting tx 3 to 4X's a day like you said.

Thank God for this board and the people on it and you.

Beagle

[NYgirl]

Oh my GOD I know exactly EXACTLY what you mean!  I feel like saying to the doctor sometimes...well since you thought it over and agreed with my plan - can I take the money I was going to give to you and send it to the person who had the advice and the other person that convinced me to call you and tell you?

Seriously. Don't you feel like - shouldnt they have come up with that knowledge in the first place?

I think this is going to be great for you I really do, darn darn I just know if you had done this way early that all this would be a moot point. I could NOT get over 9 on once a week. Stayed flat right at 9.0 for weeks. As SOON as I tried the 2x in like a week or two it was going UP to the point in only like a month the doc (wow thought for himself here) said you are almost at 16 I think we better drop back again now.

If I kept it going I would be whatever the opposite of drastic anemia is...I'd have so many red blood cells growing I'd sprout freckles and bozo hair!

[NYgirl]

We are some tough crazies us heppers us - why keep these creepy crawlers inside slinking around in our bodies!  yuck yuck gross cooties! OUT OUT OUT!  :)  I need a "cootie catcher" like we used to make in Elementary school to bonk them out of everybody.

You are going to breeze through tx you know.  It might not always be EASY but because you came on the board and asked questions BEFORE you started you are going to know the right things to do to make life easier...and that makes your tx go better. I mean imagine if you DIDNT know to go to the doc for anemia sides and get Epogen? Something like that? My GOD you could be laid OUT before you got there you know?

But because you are already gainning so much knowledge - you are going to be able to handle it and knock it OUT of the park. You watch and see...I am ALWAYS right!  :)  



Alg said: It's all I can stand and I can't stand no more." and all I remember from Popeye is "I'll glad you pay you Wednesday for a hamburger today"....(my favorite food when I was a kid and even today...can you TELL LOL)

[MissMiss]

IF you will have a CBC next week, maybe wait til you know that number before deciding.  I bet you are probly okay to quit but it sure makes me nervous with all you have been through.  Whatever you decide, we are behind you.

miss