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Avatar universal

Concerned no responce from doc yet on ring of ears

Thought I would open another thread with a question. I am afraid we loose out on opening enough treads for the day.

My Question:
When I question ringing of the ears the other day; response was animiea.  How concerned should I be and how presistant should I be with Doc.  Should there be worry of a danger zone with this.  I do not want anything to disrupt my treatment.  Doc was off yesterday and I did feel a little better so I didn't push; I did give his office all my symtoms though and how rough this weekend was for me. I can be a little too patient sometimes; and I am trying to be patient with his response. What is too long to wait.  I have a good doctor and very compasionate, it may not be him, it could be the office staff.

How hard should I persist.

cajun
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Avatar universal
Here is what I have discovered from doing some research:

Regarding Hepatitis A infection:  although some antibodies will disappear after the infection resolves, the IgM antibody to Hepatitis A remains in the bloodstream forever.  Thus anyone previously infected with Hepatitia A would show this antibody clearly upon testing.

Regarding Hepatitis B infection:  After Hepatitis B infection is resolved within the system there will always remain both core antibodies to Hepatitis B, and surface antibodies to Hepatitis B.  As opposed to those vaccinated for Hepatitis B, who will show ONLY a surface antibody to the virus.

In other words, both Hep A and Hep B should be clearly detectable upon blood testing, many years after resolution of either infection, and according to the sites that I reviewed, will persist for a lifetime.

This may point to an early childhood HCV infection in your case, which may have presented as acute HCV, and then went into the commonly seen 'invisible' chronic infection....usually symptom- free to some extent, and as we know, in many, without the 'red flag' of liver function abnormalities.

Funny you should bring this subject up.....  I remember a strange childhood illness which lasted over a month, and was treated oddly by our family doctor using castor oil supplements, and other unusual medications.  Later in life, as my mother became ill and developed a wide range of physical problems water retention, skin blotches, fatigue, yellowing of skin, lymphatic swelling, and later...strokes...leading to her ultimate death over 15 years ago....it was assumed by all to be attributed to smoking!  I have always wondered since her death if she carried a chronic HCV infection, which was passed to me at birth!!!  My mother had additional agoraphobia attacks, anxiety, panic attacks, some depression etc over the years.  All of it fits the picture.  I will probably never know the answer...and it really gives me the creeps to consider possibly having this from birth????  My alcohol abuse in my 20's may have kicked it into high gear, and caused the rapid rise in LFT's.

I can remember odd episodes (fatigue, vertigo, balance issues, neck pains) in my early teens which also fit the picture.  Precursers to the full blown later detected infection????

Strange stuff to consider!

DoubleDose
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Avatar universal
Interesting that your four friends are all 2-b....I find that intriguing and also puzzling.  What are the odds of this happening among a small group of friends in the same location for a period of time???...and with the same (not common) genotype???

My questions would revolve around whether there was 'intimate' contact among the friends...of a sexual nature...of an IVDU nature, or intra-nasal....etc.  Also, when did these people become aware of their HCV infection, and did the disease seem to develop after an 'acute' episode, or did they just find out from blood testing?  I would assume that if the were HCV positive in the 1970's, they would have likely seen some liver function abnormalities over the years, as a signal of some medical problem.

Again, my concern about 'intimate contact, or even casual contact' causing a localized infection which later migrates into the blood over decades....or becomes active because of excessive alcohol use.

Do you have any ideas why this group of friends all have genotype 2-b???   Have you heard of any other HCV positive persons who have had friends or family members become HCV positive many years down the road...with no apparent risk factor, like IVDU, sharing razors, etc????  This is an issue that I am very curious about.

DoubleDose
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Avatar universal
as with many other symptoms, tinnitus can be caused by many conditions; anemia, lifestyle, stress, drugs, high bp, etc. That is why so many have been helped by an assortment of things. Those with the anemia associated tinnitus were helped by the Procrit. High BP by the pertinent medication.  Firs thing to do is rule out reasons for it, and then, if cause is known, to treat it.
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Avatar universal
I really believe that Sandi has gone long enough at this point to experience the SVR, if it is going to happen.  Doing 60 weeks after being undetected is protocol for type 1,late responders, and previous relapsers.  I would think in Sandi's case her 60 weeks of being undetected should do the trick.  Of course that is based upon several conditions:  1. That Sandi has been regularly tested by very sensitive PCR's throughout the last 60 weeks to assure that she has remained undetected with no additional breakthroughs.   2.  That she has remained at basically the same doses of inf. and ribavirin over the past 60 weeks, without reductions.  

I do believe there were several studies in the past few years that showed an increase in SVR percentages in difficult cases by continuing the interferon without ribavirin, but using lower doses, after the standard tx period had ended.  I think doing this might be helpful for very tough cases, but in Sandi's case I am not sure she would fall under that category.  In fact her breakthrough may have been an invalid test result, or just a short 'blip' in the viral load, never to occur again.  Usually breakthrough cases continue to show a viral load.  Sandi seems to have cleared again quickly (I assume) after the apparent breakthrough, and has sailed along without any viral load.  
I really think that people who truly show an undetected by sensitive PCR, and remain that way for well over a year, have a very high probability of getting the SVR.  (Unless they had a continuous viral load for the first 6 to 12 months before becoming undetected, in which case THEY probably need two years or more at full undetected).  This is not Sandi's situation.  

If she wants to continue a lower dose of inf. for a few months, that might be helpful in increasing the SVR odds slightly, and maybe reversing additional liver damage, but must be weighed against cumulative side effects and potential after-effects of all the interferon.  Personally I feel she is in great shape, with excellent odds, given her genotype, and duration at undetected.


Chev, I do not use any other e-mail address for purposes of HCV related conversations, only because I am one of the ones who have kept the disease very confidential over the years (Select family and several close friends).  My consulting business warrants this approach, and even during the worst of high dose tx, I do not believe any of my major corporate clients, including CEO's ever suspected anything was wrong.  There WERE days when I did feel as though I were almost 'insane' while fighting through meetings with clients, and trying to seem 'semi-human'.  That was some good battle training.  Provided some additional character!!!!  (I would never want to do it again, for all the tea in China!!!)

Best wishes to you, and to Sandi!!!  

DoubleDose
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Avatar universal
Thanks for the comments about stress contributing to tinnitus.  I did develop some anxiety early in treatment and was proscibed antidepressants (Effexor and then Paxil).  Tinnitus began shortly thereafter and continued thru treatment and afterwards.  Most of the time, I'm not that aware of it.  Other times it is really annoying!

Once I was well into treatment and realized that I would be a couch potato for 6 months, I relaxed into it and took the time to catch up on a lot of reading.  (That's when I realized that my vision was changing, but that's another story.)  Of course I was concerned about what was happening to my body with the soup of drugs going into it, but mentally I felt OK.  I acknowledge though that I might not be able to objectively judge my own level of stress.

After tx was done, I was really eager to recover from the sides and get active again.  The only stress I'm aware of now is from dealing with the sx that won't go away.  What's frustrating is that there a number of scenarios that I can think of to account for the ongoing side effects - infections due to immunocomprimised system, Paxil 'discontinuation', stress / anxiety, damage from interferon / riba, etc. etc.

One can only make so many assumptions about cause before it becomes pointless to thrash around about it.  My next follow up appt is in early Feb.  In the meantime, at least I'm getting more active which really helps my outlook on life.  I have gotten really careful about one thing though - whenever I'm using power tools, I wear full coverage hearing protection, not just ear plugs!!

Take care all.
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Avatar universal
I have had hepatitis since the late 60s or very early 70s and likely 1969. I played  in an extremely loud rock and roll band for 7 years. I have ridden motorcycles for 40 years and loud V-twins for the last 15 years. I have taken anti-rejection meds since June 2000 so I would probably be characterized as immune compromised. I have never suffered from even a hint of tinnitus. I just underwent an extensive evaluation for my equilibrium problems from my bike wreck and part of the evaluation was a hearing exam that lasted 40 minutes. My hearing is perfect and, believe me when I say we played very loud music. Mike
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Avatar universal
When the Dr called over the week-end he told me that because of my Thalassemia anemia I will be on procrit through the tx.
With Thalassemia my red blood cells are shaped like tear drops.
                  BB
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Avatar universal
Cajun and others

re runs for the veterans but chinese to the newer members

Tx=treatment
Hx=history
Bx=biopsy
EVR=early viral response or negative/2 or more log drop by wk 12
RVR=rapid viral response /negative/2 or more log drop by wk 4
SVR=sustained viral response or WHAT MOST OF US LOOK FOR WHEN TX
cbc= cell blood count
wbc=white blood count
rbc=red blood count
mcv=mean corpuscular volume


what else? that is as much as I can recall right now
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Avatar universal
HGB = Hemoglobin, the number you look at to see if you are anemic!  (My least favorite problem LOL)

TVQ = How much tv knowledge you gain during tx.  ;-)
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Avatar universal
oops I meant ccbc=complete cell blood count, but hardly anyone uses that anymore. complete blood count or full blood count is the norm.

Tsh and T4 & T3 uptakes are the tests done for the thyroid.

cryoglobulins test would be nice to have, if you haven't.

as well as the HLA-B27 which is another test useful if you have arthritis or autoimmune symptoms. for that matter HLA markers should be done if rheumatological symptoms are present.
I would write "hope this helps" but it brings back bad memories. So
stay well
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Avatar universal
Hi guys,

Also others are:  PCR--polymerase chain reaction (viral count)
                  GGT--gamma glutamil transferase
                  FA--phosfatasa alcaline

Also my wife has the the HLA-B27 gene, which runs in her family, a few of her brothers also have it.  It's a good predictor to having ANKYLOSING SPONDYLITIES, in her family all that have the HLA-B27 gene has this rare form of arthritis and the ones who do not have this gene don't have it.  Also the ones with the gene tested neg. to the rheumatory factor.

How is all doing today?

  The Beagle
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99052 tn?1270983520
Had ringing in my ears before TX might have gotten more intense during TX or I focused more on it not sure. Had my post TX test and the results were no virus,waiting for the 6 month test to be clear before I do any victory dances.Been about 12 days from the end of my TX each day feel just a bit more alive slow but gaining.Able to enjoy reading again instead of just staring at a book or it could have been a wall got about as much out of either one toward the end. Good luck TXers Aloha
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Avatar universal
Alright--Good News,thanks for posting..Congrats on Clearing..makes trx so much more Doable when sucessful responders share...Hope springs eternal,but always enjoys a nudge
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Avatar universal
Most doing tx are anemic at some level. We all react differently compared to the level of anemia we are. HGB is the main component to check for anemia, but it's not the only one. My pre-tx hgb started at 15.6, I know some men were at 14.3; technically anemia sets in at 13: doctors don't get concerned or administer procrit until HGB reaches 10.
Anemia can also be indicated by the shape of your red blood cells; listed out as ovalyctes, teardrops, there are others. Anemia can be considered when this is above 15%, most doctors aren't concerned until it's above 30%. MPV indicates the differences in the size of your red blood cells. The greater the # the greater the difference, the smaller cells don't carry O2 as effectively.
All doctors have their own red flags to these readings as to when it becomes dangerous. The point is i that we are all probably anemic, each one at their own level of severity. This is the worse part of tx, sad to say that most of us will have to deal with it through most of tx; at one level or another. And what about the long term ramifications?   Peace
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99052 tn?1270983520
I think the fatigue is going away.During TX when I brought 2 arm fulls of wood upstairs from the basement I was very winded now I can get 3 and not as winded as before.Also at work I kinda draged around now I see a little more spring in my step.
Booked my tickets for the big contest in Torino next month,should be pretty crazy times.Aloha
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Avatar universal
Ha Jim,hope you well today.Where can liver patients get this fibro-scan an fibrosure test.I'm 1-a and would't mind this procedure.Insurance may not pat though.By hte way I go for bx friday.

Dyce
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Avatar universal
Don't sweat it. This was greek to most of us when we first began treatment. I had no idea what "dx" or "tx" meant at all.

What you want to ask your nurse for is ALL you lab results, including your LFT's (liver function tests), CBC's (complete blood counts), Chemscreen's, Thyroid panels -- in other words, anything they did on you. You also should have a copy of ALL your records, including biopsy report, ultrasound report, etc. In other words you want a copy of your complete FILE.

BTW SVR means sustained viral response which is usually defined as being non-detectible six-months post treatment. A lot of us, including doctors, call this being "cured".  "CBC" is a complete blood count and among other things you will get your hgb (hemoglobin), WBC (white blood cells) and ANC (absolute neutrophils). Any other abbreviation or term you don't know, just ask or check over at the Janis site where I'm sure they have a glossary. Also simply try googling the term and you'll probably find a definition.

-- Jim
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Avatar universal
Dyce,

As of six months ago there were three ongoing trials for Fibroscan. I believe they're still open and easy to get into. Your major expense I would guess would be you plane ticket. Schiff in Florida runs one, Afdhal in Boston another, and I think the third is in PA but you might want to check that out. Here's Dr. Afdhal's contact info. I've heard very good things about the work there. They would want to review your biospy slides as well, so make sure you get copies of all of them (usually a set of 5) as sometimes they only give you one slide. Contact info for Dr. Afdhal: http://hepatitis-central.com/hcv/drs/ma/boston.html

-- Jim
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Avatar universal
Thanks Jim,I live in Pa.so maybe I could hit that 1!

Dyce
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Avatar universal
Dyce,

Just did a quick look at clinicaltrials.gov  For some reason I didn't find Schiff's name or the PA place. Anyway, you'll probably find this useful and if I come up with the name in PA I'll post.

http://www.clinicaltrials.gov/ct/show/NCT00125762?order=1
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Avatar universal
Maybe my memory was playing with me on PA. Looks like Boston, Missouri and North Carolina regarding the trials. All appear to be open with end-dates in March although I believe one of our members, TallBlonde, is entering the Boston trial in the Spring, so perhaps they're extending the time line. In any event, if interested, I'd call ASAP to get on the list. And, of course, the nice thing about getting it done is that if/when you decide to repeat it let's say a year from now, you will also have a baseline number in addition to a strict correlation. That way, if you go back in let's say a year, you can follow your liver's progress in a systematic, timely fashion, between needle biopsies.

-- Jim
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107513 tn?1232286464
Schiff is also involved in the trial, as that is where I underwent the procedure. If you need contact info, I can provide the info to contact the Coordinator running the trials. She is also recruiting for a phase1 vaccine, and others.
All of this is in the University School of Medicine, and overseen by Dr Eugene Schiff.
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Avatar universal
My tinnitus started during week 5, and I wasn't diagnosed as anemic (and started Procrit) until week 14.  I've been done with treatment for two months now and I still have the tinnitus.  My doctor seemed unaware that interferon or ribavarin could cause this!  I definitely did not have the condition before tx, and I was not around loud noises during tx.

I know several people who developed tinnitus from prolonged exposure to repetitive loud noises, and they say they get so used to it they forget they have it.  But I sure don't want to get used to it!  I keep waiting for it to go away, but no luck so far.
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Avatar universal
Stress has been shown to bring on or make tinnitus worse/more noticeable.

I had a number of stress-oriented symptons start either right before or very early in treatment, including GERD (reflux). This is not surprising as many of us experience a tremendous amount of stress in the weeks/months leading to treatment. Then we start on the drugs which add to the equation, especially the riba.

You might try some progressive relaxation exercises and see if that helps some. If it gets really bad, sedatives are sometimes prescribed.

The other thing with tinnitus is how we react to it. Apparently some people are bothered more than others. The more you focus on it the worse it seems to get. I've had tinnitus for years probably from listening to loud music as a youth. I rarely focus on it and only have an awareness in a very quiet room, maybe right before bedtime, and again, only when I focus on it.

Hope things get better.

-- Jim
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