So confused!!!!!!!!!

In 1987 I was told I could not donate blood again because I had contracted hepatitis- Went to get a blood test and it was true I had had hepatitis and been a carrier.  Hadn't been sick or jaundiced. Nothing much else done until yearly bloodwork last week- Nurse called and said it looked like I was a HEP B carrier- so more blood work. I am a 59 yr old female- one sex partner my whole life, 2 children, no drugs, little alcohol, no tatoos, how can this be?  All results not in yet- Brother had HEP C due to hunting accident @ 14 (tranfusions) led to liver transplant about 4 years ago.  But I got this result after my mom died in 87
she jaundiced with her cancer.  I don't fit this profile and I am worried.

[mistybean]

most hep b carriers do not have chronic active Hep B.  It may just be the DNA from past exposure.

[genedog]

went to Dr appointment today be hes out of the country had to make new appointment Nov 9. did 55 weeks of TX been off TX now for 11 days got my first dose of riba rage Fri sat sun,,  today my right ribcage is cramping up and feel like pressure. anyone had this?

[jmjm530]

It is very confusing.

Actually we don't know a whole lot about heptatitis b here as this is mostly a hep c web site.

A good site to ask your hepatitis b questions is here:
http://www.thebody.com/Forums/AIDS/Hepatitis/

You will even get a real doctor to answer the question. although sometimes not sure if that is a postive or negative. :)

All the best luck and don't worry until you collect all the facts. Great strides have been made with hepatitis and new treatments are coming on board every day. If you aren't already, seek out a good liver specialist (hepatologist) at a larger, teaching hospital. Most general practioners and even many gastroenterologists aren't current enough on the newer treatments.

All the best.

-- Jim

[jmjm530]

How many xtra-strength Tylenol can you safely take on treatment in 24 hours? Also, anything stronger that's both liver friendly and equally important for me, stomach friendly?

Just got back from the ER after suffering some really severe ear pain. They think it got infected from maybe bathwater or a cue tip and gave me some antibiotic and anti-inflammatory drops.

As we are all so immuno suppressed on treatment, I think I'll go order one of those BubbleBoy modules like on Seinfield and just hang in there for my remaining 13 weeks. LOL.

-- Jim

[Healed24]

Hey, I wish you were doing better because you are always so helpful and positive to everyone else. When I asked my doc about painkillers he told me not to take more than 2000mg of Tylenol's in a 24 hour period (which is 4 of the 500mg (extra strength Tylenol)). One thing my doc did say is to make sure that I didn't take any vicoden because they are the worst thing you can do to your liver. I personally think ibprofen work better, but my doc`recommended tylenol (he said it's better on the liver; I'm not sure if I agree with that but I just go with it). Hope this helps.

Don't worry 13 weeks is not that long. I wish I only had  13, I have 24 more to go (If I finish out tx).

Brooke
GOD BLESS

[stc1993]

I've had that pain for about a week now.  finished tx august 9 haven't found out what it is. hurts even to sleep on right side.
see post below, some thougt it could be liver adjusting size.

Monte

[cougareyes]

My doc said no more 2000mg also. Are you using them for body aches or head aches, I found Excedrin Migraine works better for my headaches(they do have aspririn in them, stomach?). I was germaphobic before, now I don't leave the house if I don't have to.   Peace

[cuteus]

jm I never got a dx. the pain went away as misteriously as it appeared. Only two other people here have mentioned the same. They looked in my ear, they might have just guessed that it was further in the ear canal than they could see. I even got a brain scan thinking it was an aneurysm or stroke. I guess we will never know. I hope the antibiotics work.

40more: I took vicoprofen, dr would not give me oxycontin or any plain analgesic narcotic based. It worked the best, since I did have some imflammation from the arthritis-like symptoms.
I felt the same way, deal with dependance later, if you have to. But if the pain is chronic and for life...I go for the med. Labor pain is the strongest thing I decided to deal with, without medication. Anything else, give me liberty.
Welcome to the best site online.

[GoofyDad]

My doc said up to 3,000 tylenol. Don't think I've gone past 1,500 though. Looks like 2,000 wins by popular vote. Of course, tylenol PM is tylenol with benadryl. Couple of those babies and I'm toast for about 12 hours.

Wish you felt better... and not just so you'd be up to sending me the info I'd need to find the 'German' study! No rush though - seriously.

[go-girl]

For what its worth.....A pharmacist told me that tylenol passes thru our liver and Ibuprofen passes thru our kidneys. What exactly is tylenol pm with benadryl, do you know? thanx

[strator]

I try to keep tylenol to less than 1000mg, sometimes I take more, but days when I've gone over the 1000 I seem more likely to feel that noxious- got poison in me effect.

Also I've been wondering on the timing. The body aches are most noticeable when I get up for breakfast, and then around supper after work. That also is when I take my Riba, should the tylenol be spaced away from that.

Speaking of TOXINs(what isn't) I never thanked everybody for all the suggestions on the dry cracked hands. I've been using Euricin with moderate relief. BUT- I finally found something that had worked years ago when I did concrete work. It's Zim's Crack Creme (not the daily creme but the original liguid recommended for nightime use probably because it has a strange powerufl smell to it). But it seems to work overnight. BUT NOW-I haven't used it since the first night because it I noticed it has SDA 3C alcohol )in it which is denatured alcohol made from the nasty ethyl alcohol that is what we (at least I) used to consume. My understanding from the web is that the denaturing process is basically just adding a bunch of toxins that make it unpalatable and poisonous for consumption so the manufacturer's don't have to pay all the regular alcohol taxes. Am I paranoid or can that soak in and do damage to my buddy LiverWurst.

[jmjm530]

I hardly ever use Tylenol but the two xtra strength really helped with the ear pain last night. Hopefully, I won't need more. As far as your hands cracking, a cheap and effective solution is good old basic vasline. Glob as much on as you possibly can at bedtime and then cover your hands with cotton gloves. You should notice dramatic improvements in the morning. Actually best to hydrate the hands first by soaking them in cool/lukewarm water. Gloves during the day when appropriate (or not :)) especially in colder weather or when doing manual tasks is a big help. If things get really bad you can put Spenco "Second Skin" over the cracks.

-- Jim

[cuteus]

you get your rage AFTER tx?? that is a new one!

jm; did they do a culture? I had what they thought was an ear infection for two wks. One sided pain on the head, from above the ear to behind it, to the forehead. It was not an infection, antibiotics(800 mg augmentin) did not ease the pain. My pcp gave me a non narcotic med for the head pain and it helped, I can not remember the name.

[40moreyears]

Hello, I've been sitting on the sidelines of this forum for 3 weeks and decided to join in the fun. 8th week of 48, genotype 1,stage 1. I have experienced some debilitating side effects due to Peg/Riba combo treatment, but have decided to continue taking Hydrocodone to aid in my comfort. My G.P. prescibed a "compounded" form of Hydro that contains nothing else.there seems to be a general consensus that the tylenol in many pain relievers, is more harmful than the analgesic itself. I would prefer not to take anything, but tried that approach and for the life of me could'nt leave the house. I am trying to use my time productively in rebuilding a new lifestyle and career(since I can no longer work physically)and have no choice but to push myself daily. If I develop a dependence on my Meds, I'll just have to deal with it after the 48 week mark. I cannot take a year off to feel bad, I must keep on going, I've got 40moreyears to spend on this planet (if she does'nt buck all of us off before then-I think our Mother is a bit angry at the moment). Anyway, good luck with your pain and try to stay busy...It's the only way I know to keep from depression and obsession (along with anti-depressants of course).
   Thank you all for helping me to realize I am not alone.

[jmjm530]

Did they give you a dx? What I apparently have is "Swimmer's Ear" which can happen when bacteria gets into the ear canal often through water, cleaning with a cue-tip, or simply environmental. My guess is I got it soaking in my daily tar oil solution for my psoriasis.

I've had these pains to a much lesser degree on and off since I started treatment and the dx has ranged from reflux to sinusitis to TMJ, from four different ENT "specialists". :)

Hopefully, they have it nailed this time as the ear canal had significant swelling and irritation which made the dx easier. In fact, it hurt so much last night it was as bad as the worst toothache I've ever had.

Keep in mind -- I tell this to the doctors, but try telling anything to a doctor :)-- that those of us with very low WBC, mask infection very easily as typical markers of infection -- pus, swelling, etc., are greatly diminished by the low WBC. This can make dx more difficult.

Did they do a culture? LOL. You're lucky with these "specialists" if they answer four questions. :)

Here's my little theory on med care, especially the specialists. With their 2-3 minutes allocated to  "diagnosis" they can usually identify things correctly in about 80 per cent of all cases just based on statistics alone.  

However, they wil invariably mis-diagnose about 20 per cent because they really don't make any effort (or want to put in the time) to really use their mind and frankly most MD's are relatiely uncreative in that department.

These twenty per cent end up bouncing around from doctor to doctor to get relief or leaving the established medical system entirely for alternate treatments. The funny part is that I'm sure most of the doctors think they "cured" most of the patients that never come back. LOL.

That's why I've been to five ENT's. If the first one only gives me five minutes and answers two questions then maybe the second one will answer another two or three questions. I also find they because of time and insurance issues, it's very hard to get treated for more than one thing at a time. So if your ears AND throat hurt ...sometimes better to make different appointments to concentrate on each.

The other reason to switch doctors when things aren't working is the old song that it's harder for a doctor to change his initial dx than a leopard its spots. It's very true. Once they "zero" in on the problem, they tend to stop looking for other causes and lock themselves into that avenue of thought forever. Sometimes the only way to break that cycle is to see another doctor who will start afresh.

Real life aint' like the TV show "House" where they agonize for days over your symptons, weighing different treatment options :)

-- Jim

[NYgirl]

Dear Jim,

Thanks for making me laugh in the midst of your pain.

I'm thinking perhaps at this point the best thing we could do is set up a bubbleboy commune.  I've personally had enough of it out here on my own and at least we all would have enough to talk about and (whine and moan and complain) about too!

:)

I hope to God you catch a break soon.  You are sure DUE.

[strator]

I do really feel for you. Ear infections use to be an every month or 3 month battle with me stemming from wacky allergies that made my ears itch incredibly. Putting the drops in was never to pleasant either. That pain put me in bed quicker than a few serious injuries. I found keeping them covered or using cotton to keep the air out helped. Sleep was about the only thing that provided true comfort. Hope ya feel better.
Don

[jmjm530]

Thanks. I'm doing a lot better today, even went for a fifteen minute powerwalk which I hadn't done in some time -- except lately I keep forgetting to take my riba -- thankfully, so far, I've caught myself every time but it's a new pattern and I attribute it to the anemia. Something to watch out for.

-- Jim

[cougareyes]

When my HGB was at 12.4 I was complaining to my doc. All symptoms of classic anemia. Yes my hemo did drop from 15.6 to 12.4 rather quickly, yet he was not concerned.
He did say the meds created the same symptoms; exhaustion, dizziness, headaches, shortness of breath.
My hemo kept going down to 11.3, but I kinda felt like things were evening out; same symptoms just not any worse. Now I'm up to 11.7, in week 17 the mental issues are starting to get obvious.
I can't concentrate, can't even make the simplest of decisions, and have a hard time communicating. The dizziness, shortness of breath, headaches, and exhaustion are still there. Let's not talk about the rashes, crusty eyes, or crusty nose.
I've gotten use to the pain and occassional nausea; no meds for that. My new thing is insomia, filled a rx for ambien yesterday but haven't taken any yet.
I'm trying to give my family and human friends a break; so my cyber friends are the lucky ones today. I just needed someone to complain to. And Jim sometimes it is just the meds.  
Thanks for Listening

[strator]

Anyone know what moderately lipemic means?

[jmjm530]

Regarding insomnia, I've found that has come and gone and come and gone (mostly gone) during tx. I also have an rx for Ambien lying around somewhere that I have cashed yet. If able, I'm going to try and start walking on a more regular basis as exercise traditionally helps you sleep better. Also, maybe you should try some b12 injections. I swear I slept like a babe after each shot although it doesn't seem to last for the whole week.

-- Jim

[strator]

40moreyears- Welcome in. If your missing Mama natures sometimes nurturing ways while she's going through this mood swing phase you came to the right place. Thanks for joining in. I consider this place a gift. I remember reading once that 50% of any gift is how it's received. Hope you feel helped.

Jim-Thanks, I plan to try the vaseline/glove thing tonight. I'm off today so I can take my Dad to the VA hospital for an mri.I woke up much achier than usual(been like that for 3 days)but chose to skip the tylenol and go back for a 2hr nap. I feel way better. I'll see how the day goes, maybe I've been letting tylenol mask just not giving my body enough rest on this stuff.

Now to babble on drs.- My Dad taught me a little allegorical lesson on this in my 20's. Although we always fix our own stuff around here, I was young and couldn't be bothered. I got a flat, went to a garage and they put on a new tire. A month later same tire, same fix. The 3rd time when I told my Dad he said, "the problem with a lot mechanics is they fix things without figuring out what caused the problem. He crawled under the car and pointed out a bur that was causing the flats.
For 30 years I was going to GP's and ear drs with this infection thing. Told them my allergies would act up and I couldn't resist going after the itch with a cue tip. Usually scratching the ear, moisture would get at it and cause 'swimmers ear.' They'd give me stuff for the infection and tell me (like Mom said) don't put anything smaller than your elbow in your ear. Last year my present doc listened to me, fixed the infection and gave me a script for drops with  anti itch stuff. "Next time they start to itch use this." It works.
Sorry to go on but- You mentioned docs not taking the time. A few years ago Dad in his late 70's was still driving himself to the VA Hospital for checkups. Never enough handicapped spots for the crowd there so he parked 6 blocks away walked into the office 5 minutes late. But the young dr said your late, I can't see you come back in 2 weeks at 11. Dad left and got a paper from the VA changing his appt to 1:30. When he got there the dr said I told you to be here at 11, I don't know why they did that, you'll have to reschedule. Don't get me wrong they've in general been great to him. But I blew my stack. Next trip(and always now), I went with him. I aked the receptionist what the media would think with the story of a former WW2 medics aid 'on the line' who had received a Silver Star for gallantry in action, running out under heavy artillery and machine gun fire at the Rapido River and bringing back over a score of wounded, being refused cause he was late. He didn't have that option in Italy. Now the doc comes out to greet him and his appts end in laughter. At 72 they told him he was too old for a back operation for the chronic pain. Saw every specialist and nuero and pain guy, nothing helped. (though he still spends 3 hrs a day remodeling our house)Today at 82 he gets his 40somtehingish mri and the 1st week in  November they have him scheduled for back surgery. Now whose late.
Don

[GoofyDad]

"Jim - Thanks, I plan to try the vaseline/glove thing tonight."

Did I miss something, boys? On second thought, nevermind..... prolly best that I steer clear of this one after all. Back to your bizz gents ;-)

[cougareyes]

So it sounds like you're still in the doghouse, lol

[Pirategold]

Don't most of us wear watches with alarms on them?  Or carry cell phones which also have alarms?  Why not set the alarm for the times you need to take your meds and then you don't have to think about it any more.  Heck you can even set up "pop up" reminders on Microsoft Office Outlook.  Let the computer be our brain and reminder system.

Just a thought.

Pirate

[GoofyDad]

This is <a href="http://www.gizmodo.com/gadgets/cellphones/simpill-medicine-bottle-with-sms-reminders-031190.php">what I want</a>. But I haven't been able to find the product/service for sale. Whatever the cost would be worth the angst I'd suffer over a missed dose. Any leads appreciated.

[GoofyDad]

"So it sounds like you're still in the doghouse, lol"

Nope! A good sniff in the arse and a cold nose to the crotch once again worked their magic wonders.

[v eggie dip]

"A good sniff in the arse and a cold nose to the crotch once again worked their magic wonders"

men and dogs  -  Synonymous

*smiling dip an ducking dah blows*  lol

[friole]

Jim and Cougar -  you guys are going thru heck.  I wonder if we could lobby to get Procrit over the counter.  To heck with all these lousy stingy doc's.  Yes, Coug, I think you should be on it.  I hover between 11.7 and 11.2 and I can really feel the difference.  I don't think I will need anything until I hit 10, but it is obvious that you need it now.  Maybe the B12 would help - I have been thinking about it myself.

Jim - I never had the ear infections, but when the kids were little, those were the absolutely worst most painful things and they always came on so fast, with no notice.  I feel for you.

40more - welcome into the game from the sidelines.  The more the merrier - hate for you to miss the fun.  YOu are in good company and we all understand better than our families, as much as they try.

Goof - I love the RX bottle reminder, but I fear it may cost more than the rx itself.

friole

[strator]

veg- Aw shucks veg, let's remember I just read those words someplace.
I am currently in bondage to Ruby Riba. But the honeymoon may be over, it's not yet as turbulent as my past relationships, but somehow so familiar.

de goof- I just stopped at the dr to pick up my cbc labs. Was still laughing so hard from the glove comment I figured it was fruitless to tell them I'm not up to par.
           4wk cbc    2wk cbc
RBC        4.12 L      4.67
Hemoglobin 12.6  L     14.4
Hematocrit 35.4  L     41.5
platelet ct 109 L      160
Abs Nuet    2141       2102
HFP
AST         32         55
ALT         42         72
Exhibits slight hemolysis?
I guess this is okay????

[cougareyes]

Obviously me operating at a hgb of 11.7 is a far cry from my normal 15.6; but what do you do. My GI is not at all concerned, and I know most docs don't do anything until around 10. This perhaps isn't going to kill me but it doesn't mean it couldn't be doing some damage. 31 more weeks of this and I could be permanently brain damaged(just joking). I feel as if things have evened out, and I can ride this the rest of the way. The B12 sounds like a good idea, how about some folic acid also? I'm just frustrated because I feel so useless. I know it's only temporary, but it doesn't help today.    Peace

[jmjm530]

So I'm assuming you're not on Procrit then? Hgb levels are such an individual thing. I got hit very hard at week 2 when my Hgb dropped from pre-tx 14.8 to I believe 11.2. Specifically, I could hardly walk across the street and ended up in the ER almost collapsed and very naucesous. I've been on 40,000 U/wk Procrit since and lately 60,000 u/wk. But I'm 58 and have never done well -- nor has anyone in my family -- at high altitudes. Also, it hit so fast that my body didn't have time to adjust. Now I'm probably close to the 11.2 and while I definitely feel the effects of the anemia, I'm nowhere close to feeling like I did when i went to the ER. More time to adust I guess. But how far can I drop before having to reduce riba is another story.

Regarding the B12, I'm taking Centrum Silver which has 400 mg of Folic Acid in it. I hope that is enought.Like you suggest, the two should be taken together. I will say this, after only one b12 injection my serum b12 rose about 25 per cent and my homocystene went from the "red zone" into the "green". So as far as the numbers go it seems to work. As far as how I feel, hard to say, except I did notice deeper sleep the night after the shot, which frankly was wonderful enough in itself. Right now I plan to take them ever other week while I'm treating.

If you go this route get the indvidual 1ML vials as opposed to the 30 ML multi-use vial. While a little more expensive, they're still cheap -- around $3 a shot -- and I believe the individual one use vials are alot more sanitary than having the large multi-use bottle sitting around for months with numerous punctures in the rubber. I'm also using a 3ML syringe, 23 Gauge with a 1" long needle. The shot is IM and I inject straight into the thigh (over to the right a little into the big muscle). Umlike with the sub q shot, you don't pinch the skin as much as "push" it a bit and then jab Ninety degrees straight it. Got to admit I was a bit freaked the first time especially looking at that 1" needle but I didn't hit bone so I guess it worked. :)

-- Jim

[v eggie dip]

"I remember reading once that 50% of any gift is how it's received."

you're awesome!  wanna marry me  hahahahhaha!!!

*smitten by strator's writings*

[jmjm530]

Glad to see you're fighting through this thing, don't have to say it ain't easy. :) As far as the meds creating the same symptons as anemia -- I'm sure there is some overlap -- but I've observed a definite pattern in symptomology when my Hgb drops below 13. Right now it's probably somewhere in the low 11's (got fed up and didn't do a blood test this week :) ) and it just ain't the same when I was Hgb 14 on the same meds for many weeks earlier in tx. Forgetting to take my riba three times in a row is a good example. Fortunately, I remembered each time within an hour so no harm.
Getting headaches driving is another. Not being able to organize my thoughts as well as I'd like still another. Also starting to develop a "don't give a sh*t" attitude and wonder what's that about. The only good thing about the anemia is I think I might be sleeping better and am a little less "edgy".  

-- Jim

[friole]

All I know to look for are the hemoglobin and the absolute neutophils, and those look great.  I think you are doing quite well.
Kathy

[strator]

Cool, Thanks. My brain glasses just seem to fog up whenever I look at numbers.

[GoofyDad]

Moderately Lipemic: Stretching and thinning of the lips and facial areas caused by overt straining. Acute cases treated with collogen injections - mild ones by the addition of fiber to the diet..... Nahhh - I dunno.

I like the looks of the ALT and AST though. Nice to see them dropping in where they belong. I think it's reasonable to infer there's something good going on in there. We'll hear if I'm wrong :)

[jmjm530]

All the best luck with your doctor's appointment. If you want, stop by again and let us know how things work out.

-- Jim

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

[didia]

Thanks for your comments- I have made a conference appt with my Dr to discuss the tests results for next week.  The blood work showed that my GFR was 60 and all my numbers are in line with the lab standards-My labs have really changed since a year ago. I am looking forward to visiting with the Dr. for sure.  Thanks again for your responses and the links you sent.
didia

[strator]

I could actually feel my face getting SEVERLEY lipemic from laughing and smiling. What on earth do you eat? You must have a whole committee zapping around popping up with these instaneous laffaroos. Had a Tough day for logistics and ya just made it better. Maybe you should write jingles, you know, counterclockwise toilet cleaner and all. Taaanks Fella!