Why do they want to wait a year before treatment?!

Luckyman, In order to track your "story" I clicked on teh left by your name and it brought up your prior posts. Since we have so many members, it would be easier to follow you if you had one thread and added to it when there is new news. With so many old posts out there, folks answer to any which one and don't have all your information in one place. Please stick to this one...maybe change the name to Luckyman Hoping for Hep B treatment this year.

You ha
ve Hep B and that can sometimes resolve on its own. Maybe that is why he wants to wait to see if you body heals itself.

Some insurance companies are not covering it yet...could that be your case? without good insurance the treatment is really expensive. Sovaldi is running $1000 a day.

How are you feeling?Are you alcohol free? Being careful about transmission to others?

Best,

Carol

MamaLama said...
Luckyman, In order to track your "story" I clicked on teh left by your name and it brought up your prior posts. Since we have so many members, it would be easier to follow you if you had one thread and added to it when there is new news. With so many old posts out there, folks answer to any which one and don't have all your information in one place. Please stick to this one...maybe change the name to Luckyman Hoping for Hep B treatment this year.

You ha
ve Hep B and that can sometimes resolve on its own. Maybe that is why he wants to wait to see if you body heals itself.

Some insurance companies are not covering it yet...could that be your case? without good insurance the treatment is really expensive. Sovaldi is running $1000 a day.

How are you feeling?Are you alcohol free? Being careful about transmission to others?

Best,

Carol

Thanks Carol. No idea with the insurance but $1000 a day is crazy! Ouch! My feeling is about 50% back to normal for me. I'm back at work every day, back in the gym, playing ice hockey again and getting out with friends. But I still feel weak, mainly on my legs and back, and my joints still hurt me (gym is to try and build up my strength on this).

As for alcohol free, sad to say that I am not. I've asked both the GI doctor and this new Hep B specialist if I should avoid drinking and both said it was ok to drink 2-3 drinks on the weekend but don't get crazy drunk (obviously). I have been careful about transmission to others indeed though.

Your doctors that said it's okay to drink aren't looking out for your best interests. I have a feeling that you are having trouble quitting alcohol and might be twisting their answers to suit yourself. Either way, you shouldn't be drinking.

For numbers and lab sakes:
CBC Results:
WBC - 7.0
RBC - 4,79
Hemoglobin - 14.8
Hematocrit - 45.1
MCV - 94
MCH - 30.9
MCHC - 32.8
RDW - 13.8
Platelets - 254
Neutrophils - 56
Lymphs - 32
Monoctyes - 9
Eos - 3
Basos - 0
Neutrophils (absolute) - 3.9
Lymphs (Absolute) - 2.3
Monocytes (Absolute) - 0.6
Eos (Absolute) - 0.2
Baso (Absolute) - 0.0
Immature Granulocytes - 0
Immature Grans (Abs) - 0

Comp. Metabolic Panel
Glucose - 83
BUN - 20
Creatinine, Serum - 1.16
eGFR If NonAfrican Am - 81
eGFR if African Am - 93
BUN/Creatinine Ratio - 17
Sodium, Serum - 142
Pottasium, Serum - 4.1
Chloride, Serum - 103
Carbon Dioxide, Total - 24
Calcium, Serum - 9.6
Protein, Total Serum - 6.6
Albumin, Serum - 4.3
Globulin, Total - 2.3
A/G Ratio - 1.9
Bilirubin, Total - 0.5
Alkaline Phosphatase, S - 71
AST (SGOT) - 61
ALT (SGPT) - 115

Urinanalysis Gross Exam
Specific Gravity 1.027
pH - 6.0
Urine-Color - Yellow
Appearance - Clear
WBC Esterase - Negative
Protein - Negative
Glucose - Negative
Ketones - Negative
Occult Blood - Negative
Bilirubin - Negative
Urobilinongen, Semi-Qn - 0.2
Nitrite , Urine - Negative

HBV Real-Time PCR, Quant
HBV IU/mL - 18,907,000
log10 HBV IU/mL - 7.277
HBV Copies/mL - 110,040,000
log10 HBV Copies/mL 8.042

Panel 083824
HIV 1/0/2 Abs-Index Value <1.00
HIV 1/0/2 Abs, Qual - Non Reactive

HBV Genotype/PreCore
HBV Genotype - HBV Genotype D detected
HBV PreCore Mutation - Basal Core promoter mutation at 1764 was detected. HBV PreCore Mutation 28 was detected.

Prothrombin Time (PT)
INR - 1.1

AFP, Tumor Marker (serial)
AFP, Serum, Tumor Marker - 1.7

TSH - 1.770

PTT, Activated
aPTT - 26

Hep B Surface Ab
Hep B Surface Ab, Qual - Non-Reactive

Mitochondrial (m2) Antibody - 2.8

Vitamin D, 25-Hydroxy - 59.6

HCV Ab w/Rflx to Verification
HCV Ab - 0.1

Phosphorous, Serum - 4.0

Antinuclear Antibodies Direct
ANA Direct - Negative

Ferritin, Serum - 258

HBsAg Screen - Positive Abnormal

Hep Be Ag - Negative
Hep Be Ab - Positive Abnormal
Thyroid Peroxidase (TPO) Ab - 8
Hep B Core Ab, Tot - Positive Abnormal
Hep A Ab, Total - Negative

So yes, happy my vitamin D levels went up. Still feel I could use 20 more points on there. Also need Hep A vaccine. The rest is good, except for the Hep B portion which I need to clear.

**David** said...
Your doctors that said it's okay to drink aren't looking out for your best interests. I have a feeling that you are having trouble quitting alcohol and might be twisting their answers to suit yourself. Either way, you shouldn't be drinking.

TOTALLY AGREED!! Even with minimal liver damage I was told NO ALCOHOL AT ALL by several Hep Docs. I also had a close friend diagnosed with Hep C in 2008 and he continued drinking alcohol. He died two years later in the hospital with liver cancer. Alcohol is a hard drug to quit once addicted. I was stuck in a whiskey bottle well over 30 years. What a waste of money and loss of family and friends over drunken foolishness. I will happily help anyone to quit.

ppm guy said...
luckyman, trial sounds good. get back to us about your progress in knocking down that v/l. good luck
barry

Thanks Barry. I obviously have lots of questions for the doctor before I do this. I want to make sure I can REMAIN active with this med and not have side effects that put me down. That's my biggest concern.

Doctor was quite pleased to see that I was relatively healthy for the viral load I had, which keeps spiking up...

My doctor ( a respected hepatologist with a stellar success rate) also OK'ed me to drink a couple beers occasionally. Obviously if your liver is cirrhotic drinking alcohol or taking Tylenol or ANY other substance which damages the liver is a really bad idea though. My liver was/is not damaged.

hey lucky, a biopsy and probably an ultrasound. they need to know how much damage has been done and they need to see your full abdomin, to rule out other issues.
barry

So after discussing with family and friends, they have all urged me to do this clinical trial. We also concluded last night that I contracted this through a dirty dentist needle. It was only logical explaination... but that's beside the point right now.

I asked the doctor more questions and he gave me the answers I wanted to hear (and the truthful answers too). One of the main things I was concerned about is some sort of issue I was having involving some inner ear disorder and brain fog and the hep b. He said there have actually been some talks about it and it's possible the virus may be causing it.... if it goes away when treated then I'll know for sure that was the cause....That being said, since this came about when I first got Hep B, I'm certain it's the cause.

I'm still worried about side affects, especially with the potential bone density loss... I don't want to wither away and look skinny. I'm fairly healthy and active and want to remain that way (play sports, work out at gym, get to work every day, etc.). But I need to chance this. Anyone on here have an experience they can share with Viread?

Does anyone know how far along they are from a "cure drug"? I heard 3-5 years. In the meantime, I'm just going to keep praying to God for a miracle that my body clears and is cured of this before any of this starts.

 

ppm guy said...
sounds great!! i hope your body responds to the meds and you regain quality of life. stay in touch
barry

Thanks Barry, I'll probably put a log up here to let everyone know how I feel and what happens, etc.

So I realized today that a lot of my symptom's are VERY similar to those who got the bad Hep B vaccine years ago...

I was doing some research and found on the web, people who had the bad Hep B vaccine and all the symptoms they got from it. I was stunned to learn that almost every symptom they had, is what I currently have. I know, I know "these are not typical symptoms of Hep B, it sounds like Meniere's Disease" but I tell you what, I was NOT having these symptoms before Hep B. So, I am putting it out here for reference sakes so people can see in case they are experiencing the same thing one day:

-Ringing in the ears (came about as my viral load went up from 276,000 to about 5 million)

-Balance issue -- Going up an escalator, I feel as if I am going to fall backwards. Never happened before.

-Joint pain, especially in the neck area. Been doing chiropractic care for this. Helps for a day or two.

-Loss of muscle mass (which included loss of about 20-25lbs -- I went from a size 38/32 to a size 36/32 which is barely fitting now. My legs had so much muscle in them, they used to fill out the jeans.. no it was not fat).

-Shakey Hands... not to be confused with "tremors" like people with Parkinson's Disease. Been told due to anxiety. Tried taking meds for this, no help. Believe this is due to weakness

-Issues with sitting up straight, probably related to the muscle mass loss and weakness I experienced. Walking and standing are not issues with this.

-Brain Fog/Loss of concentration

-Itchy skin

-Front teeth are starting to feel loose - I attribute this to the Vitamin D issue with Hep B patients

-Have suddenly become afraid of heights

-Issues with sleep. I can no longer take a nap in the afternoon like I used to be able to. When I try to, the minute my body goes into that mode where it's ready to fall asleep, my entire body feels like it either has a spasm or like my soul is going to be sucked out of my body, so I remain awake. Used to be able to sleep 2 hours for a nap on weekends. With night sleep, I can sleep through the night but if I get up earlier in the morning (like 6am) then I have some issues going back to sleep.

- There have definitely been days where I have been depressed because of this. Not as bad as I was before, as I've learned to deal but some days come still (especially since I feel like I got this through a fault of a dental needle, which could not be avoided on my part... as I'm usually super careful.. if only I was vaccinated)

- Sometimes a muscle twitch or a muscle spasm, and other times there is a spot where I feel like someone quickly pricked me with a needle on the bottom of my foot (I believe, in reflexology, it is the same spot where the liver is)

I can only attribute all these symptoms to Hep B, as most came about with it... and my symptoms started 3 days after a dental visit too. It should be interesting to see if these symptoms go away when meds are started and viral loads go down. In the meantime, I am going to continue to work out at the gym and do the things I can continue to do (sports, gym, work, etc). Hopefully, I get back into my normal life soon.

Hi lucky, Be encouraged going into your treatment for Hep B. Like your Hep B, there are also many people with Hep C with no known risk factors.

I have questions about gamma shots when boomers were children, and women had gamma shots often with childbirth. Our blood supply was polluted until I was in my 30's. I had transfusions when I hemorrhaged during childbirth. I also had gamma globulin shots when I was exposed to Hep A with another pregnancy. (1970's). I did not get a Hep or HIV, but so many did. So call me lucky. My Mother was a nurse, so I had excellent medical care as a child. But who knew our blood supply was polluted. No one probably really knows if what they think the source of their Hep C from 40 years ago is really the source. But that is just my opinion.

There are always risk factors in simply living. Some things we just don't know the answers to in this thing called life. Frankly, growing up in my generation...polio was the biggest fear. Where you got Hep B does not matter. You are taking care of getting well. We are here for you ;) Big hugs,