I Guess I'm Not Crazy.....

Well, turns out after consulting with my General Practitioner, the GI Doc is not going to insist I see a Psychiatrist :-) Rather, he agreed with my GP Doctor's assesment that any potential depression side effects from combo therapy could be managed by her. Thus, they are recommending a Rx of the antidepressant drug Lexapro to be begun two weeks prior to the commencement of combo therapy. I have taken it for several days now and don't really like the way it makes me feel, my biggest complaint being that, for me , it seems to cause insomnia.

My liver biopsy was performed quite well yesterday, virtually painless, unlike my last one four years ago which was a bit painful. Very pleased with that, now just waiting for the report from the pathologist in hopes that any liver damage caused by the virus continues to be minimal.

Good News and Some Frustration

Well, since my last posts I was seen by a local Gastroenterologist who ordered an Abdominal Ultrasound which I had performed this last Thursday and a Liver Biopsy which has been scheduled for Tues. September 04. The good news is that my lab work showed my viral genotype is type 3a. The reason this is good news is that the length of your treatment depends on what hepatitis C genotype you have. Genotype 1 generally is treated for 1 year and genotypes 2 and 3 generally are treated for 6 months. Also of significance is that studies have shown that treatment works for up to 50% of people with genotype 1 and up to 80% of people with genotype 2 or 3.

The frustration stems from being notified by my current Gastroenterologist that he won't put me on treatment until I am evaluated by a Psychiatrist for clinical depression, Clinical Depression is one of the main contraindicators for current Hepatis C Combination Therapy. This is due to the fact that when I discontinued my very short trial of interferon treatment around six years ago I mentioned the D word ("depression") as one of the reasons I wished to discontinue treatment at that time. Yes, I was a little down about not being able to work etc. and so decided to quit treatment and return to work, hoping to manage the virus with alternative methods (Chinese Herbal medicine etc). I know however, I don't have clinical depression and this is frustrating me because now that I have decided to undergo treatment I find myself anxious to get started. Oh well, for now it's hurry up and wait for the ultasound, biopsy results and the Psych referral.


As far as the labs which have come back already here is my current baseline;

AST is slightly elevated at 67
ALT is slightly elevated at 110
HDL Cholesterol is low at 37
And HCV Viral Count is at 5,790,000 (Genotype 3a)

Here's to the bells that still can ring.
Forget your perfect offering.
There is a crack in everything.
That's how the light gets in.
-Leonard Cohen

A New Direction

Well, my closing of this blog turns out to be a bit premature. Those of you who have been readers of this blog know that for the last couple of years I have been attempting to battle my chronic hepatitis c infection with alternative medicine, especially Chinese Herbal Medicine. I have recently come to a cross roads which has forced me to reevaluate my situation and chart a new course. Though for the most part I have been able to do what I want over the last couple of years things have continued progressing and I have continued to experience, off and on, some periods much worse than others, body aches, fatigue, lethargy, mild right upper quadrant abdomen pain and generalized "flu" like symptoms. The fact that for long stretches (months) of time I could just simply ignore these symptoms and go on, pushing myself to fulfill mundane responsiblies like my job etc. so that I could enjoy the wonderful year I have had, the highlight of which was marrying my Lady L. and enjoying a beautiful honeymoon and first year together, the fact remains, I too did also experience stretches of time where the symptoms where severe enough to limit my ability to work and take care of mundane affairs. I tend to be the eternal optimist and often found myself just pushing myself along, looking forward to the next beautiful day. Well, over the last couple of weeks I have again experienced a much more severe than usual bout of symptoms, similar too, but not quite as bad, as the first recorded in this Blog espisode of October 2005.

I am not sorry I gave Dr. Zhang's Chinese Medicine protocol a try, it definitely had some profound positive effects on my health and I am sure I am in better hepatic health today than I would have been otherwise. As mentioned it did allow me to enjoy an especially happy and rewarding period of my life. I have, however, now come to the point where I must admit this approach has not been enough, or at least, must now be augmented with more aggressive treatment methods. I am so certain of this that I actually approached my General Practioner this past week with a request for a referral to the Hepatologist I seen in June 2003 who at the time performed a liver biopsy (Grade 1, result) and offered me interferon treatment which, at the time, I declined for the option journaled here. At the time he said that was fine, he could agree to that and recommended a follow up biopsy in 2-3 years, time has a tendency to get away from one, and it has now been 4 years since this last biopsy. I am now awaiting the referral from my health insurance and will followup with this course of action. I am sure he will want to do a followup bisopsy and I am now determined to follow his subsequent recommendation, even if that is interferon treatment.

Like most guys, it's hard for me to admit to being afraid but I guess that's a large part of what I've been battling with. We all know courage is important and I am determined to muster the internal resolve to see this through but perhaps, the real key lies in the yogic Niyama (practices, observances) of Isvarapranidhana, which literally means in Sanskrit, "to lay all actions at the feet of God". Maybe self-surrender is the key, after all, as it is written, "For pure will, unassuaged of purpose, delivered from the lust of result, is every way perfect". After all, I know I have done everything in my personal power to combat this and now it's up to the Universal Will.

A Wider Lens

Since I have not had anything new to post recently in regards to Hepatitis C and it's treatment I have found myself posting here very infrequently, thus, have decided to begin a new blog which will be more eclectic in it's subject material. This will allow me to leave this blog as is, without diluting it's focus on Hep C, for those mainly interested in that subject matter.

The new blog can be found at, A Wider Lens

Great Little Essay

  I really enjoyed this post made by one of my favorite bloggers recently. He managed to distil more spiritual truth in one short essay than many books on Spirituality manage to accomplish in hundreds of pages. Kudos.

Discontinuing the Chinese Medicine for now.

Well, after weighing all the factors I have decided to discontinue Dr Zhang’s herbal protocol for now. I felt great on the Chinese Medicine for about 6-8 months and then they seemed to no longer have any effect. Thus, due to the very high cost of the protocol (close to $300/month) I can no longer justify the expense. Plus there’s the factor of even though I do seem to feel somewhat better at times when I take the Chinese Medicine my liver enzymes have continued to elevate and as Ron Metcalfe commented on my last post, “I felt better when I did TCM. However my ALT's kept elevating and I could never rule them out as the protagonist.”
Thus, for now I’ve decided to discontinue the Chinese Medicine and then have my liver enzymes retested in three months to see if perhaps there is a correlation?
Having said all that, however, I can’t deny the amazing healing effects I experienced with the Chinese Medicine last October/November 2005 when I was the sickest. I felt much better within two weeks of beginning the Chinese Medicine. Maybe, the CM is better for short term healing and not so much for long term use. At any rate, I am glad I gave it a try, as I can say for certain I am much healthier now than I was a year ago.

Is No Treatment Better Than Treatment?

Well, it’s time to admit that treatment with Dr. Zhang’s Modern Chinese Medicine protocol has not had the hoped for results. When I say hoped for results I mean that this chronic viral infection continues to at times interefere with my life, causing me to miss work, cancel social engagements (had to miss my Grandmother’s 84^th birthday party this past weeknend which was very discouraging) etc.

On the other hand I am far better off than I was at this time last year when I was the illest I had ever been due to this condition. How much did Dr. Zhang’s herbal protocol contribute to this improvement over the last year or how much was simply the result of the body’s natural ability to heal itself I cannot say?

At any rate, thinking about all of this over the last few days as I’ve once again been feeling ill has led me to the conclusion that for this particular viral illness no treatment at all may in fact be preferable to the current standard medically accepted treatment for Chronic Hep C infection. Consider the following which comes directly from the website of the Department of Health and Human Services Centers for Disease Control and Prevention;

What are the chances of persons with HCV infection developing long term infection, chronic liver disease, cirrhosis, liver cancer, or dying as a result of hepatitis C?
Of every 100 persons infected with HCV about:

• 55-85 of persons might develop long-term infection
• 70 persons might develop chronic liver disease
• 5-20 persons might develop cirrhosis over a period of 20 to 30 years
• 1-5 of persons might die from the consequences of long term infection (liver cancer or cirrhosis)

What is the treatment for chronic hepatitis C?
Combination therapy with pegylated interferon and ribavirin is the treatment of choice resulting in sustained response rates of 40%-80%. (up to 50% for patients infected with the most common genotype found in the U.S. [genotype 1] and up to 80% for patients infected with genotypes 2 or 3). Interferon monotherapy is generally reserved for patients in whom ribavirin is contraindicated. Ribavirin, when used alone, does not work. Combination therapy using interferon and ribavirin is now FDA approved for the use in children aged 3-17 years.

What are the side effects of interferon therapy?
Most persons have flu-like symptoms (fever, chills, headache, muscle and joint aches, fast heart rate) early in treatment, but these lessen with continued treatment. Later side effects may include tiredness, hair loss, low blood count, trouble with thinking, moodiness, and depression. Severe side effects are rare (seen in less than 2 out of 100 persons). These include thyroid disease, depression with suicidal thoughts, seizures, acute heart or kidney failure, eye and lung problems, hearing loss, and blood infection. Although rare, deaths have occurred due to liver failure or blood infection, mostly in persons with cirrhosis. An important side effect of interferon is worsening of liver disease with treatment, which can be severe and even fatal. Interferon dosage must be reduced in up to 40 out of 100 persons because of severity of side effects, and treatment must be stopped in up to 15 out of 100 persons. Pregnant women should not be treated with interferon.

What are the side effects of combination (ribavirin + interferon) treatment?
In addition to the side effects due to interferon described above, ribavirin can cause serious anemia (low red blood cell count) and can be a serious problem for persons with conditions that cause anemia, such as kidney failure. In these persons, combination therapy should be avoided or attempts should be made to correct the anemia. Anemia caused by ribavirin can be life-threatening for persons with certain types of heart or blood vessel disease. Ribavirin causes birth defects and pregnancy should be avoided during treatment. Patients and their healthcare providers should carefully review the product manufacturer information prior to treatment.

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To sum it all up, only 1-5 % of persons with Chronic Hepatis C infection might die from the consequences of long term infection (liver cancer or cirrhosis). Is this small percentage of risk worth the many side effects of the current medically prescribed treatment of choice, especially when the current treatment, ribavirin + interferon, is only effective for up to 50% of patients infected with the most common genotype found in the U.S. [genotype 1]!!!! Is this 50% chance worth all the risks of combination therapy? For myself, I had to answer no. After all, death is not the problem, we're all going to die. Life is the challenge and at this point I don't need the added challenge of combo therapy side effects.

For myself, medical science is going to have to give me better odds than the above. This is why, for now, I choose non-treatment over treatment. I will continue to strive to live a quality life, do what I can to better my health through practical means, good diet, meditation, exercise, positive frame of mind and perhaps more importantly in the words of Warren Zevon, “enjoy every sandwich”.

This is the day that the LORD has made. We will rejoice and be glad in it! -Psalms 118:24

It's Been A Year

Well, it’s been about a year since I decided to give Dr. Zhang’s Chinese Herbal Medicine protocol for Hepatitis C a try. Was it successful? I just had another check of my liver enzymes this past month and the labs showed continued elevation of my ALT and AST enzymes. AST was now 100 compared to 110 back in May, while ALT now measures at 170 compared to 181 back in May. So judging by these criteria there is no objective improvement, but I must admit, subjectively things are much better, especially, compared to last October when I was very ill. I feel much better now, more energy and though I still have bouts of not feeling well, lethargy, malaise, body aches, loss of appetite they are nowhere near as severe as a year ago. I do know I enjoyed a round of golf this morning on a beautiful Fall day and was grateful to be there.
One important point to remember is that lab testing of liver enzymes does not in any way indicate the amount of liver damage, yes, it does show definite evidence of liver inflammation but the only true measure of actual liver damage is the liver biopsy. I have undergone two biopsies in the last 7 years and both of them graded only a 1, which leads me to believe that aggressive treatment with interferon is, in this case, unwarranted. I’m still not convinced that interferon therapy is the answer in most cases of Hepatitis C infection, especially since it can cause even further health problems and with barely a 50% success rate is it really worth the risk?
All I know is that I am able to enjoy today, and really, isn’t that enough?

“17. Also the Holy One came upon me, and I beheld a white swan floating in the blue.

18. Between its wings I sate, and the æaons fled away.

19. Then the swan flew and dived and soared, yet no whither we went.

20. A little crazy boy that rode with me spake unto the swan, and said:

21. Who art thou that dost float and fly and dive and soar in the inane? Behold, these many æons have passed; whence camest thou? Whither wilt thou go?

22. And laughing I chid him, saying: No whence! No whither!

23. The swan being silent, he answered: Then, if with no goal, why this eternal journey?

24. And I laid my head against the Head of the Swan, and laughed, saying: Is there not joy ineffable in this aimless winging? Is there not weariness and impatience for who would attain to some goal?

25. And the swan was ever silent. Ah! but we floated in the infinite Abyss. Joy! Joy!

White swan, bear thou ever me up between thy wings!”

---Liber LXV, Cap. II, vs. 17-25

Some Favorite Quotations

Here are the first few of some of my favorite quotations I would like to share, in no particular order:

“So live your life that the fear of death can never enter your heart. Trouble no one about his religion; respect others in their views, and demand that they respect yours. Love your life, perfect your life, beautify all things in your life. Seek to make your life long and of service to your people. Prepare a noble death song for the day when you go over the Great Divide. Always give a word or sign in a lonely place. Show respect to all people, but grovel to none. When you arise in the morning give thanks for the light, for your life and strength Give thanks for your food and for the joy of living. If you see no reason for giving thanks, the fault lies in yourself. When your time comes to die, be not like those whose hearts are filled with fear of death, so that when their time comes they weep and pray for a little more time to live their lives over again in a different way. Sing your death song, and die like a hero going home.”

-Tecumseh

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If you hate a person, you hate something in him that is part of yourself. What isn't part of ourselves doesn't disturb us.

Hermann Hesse

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A loving person lives in a loving world. A hostile person lives in a hostile world: everyone you meet is your mirror.-

--Ken Keyes, Jr

There is only one corner of the universe you can be certain of improving and that is your own self.

-Aldous Huxley

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Better to light a candle than to curse the darkness.

-Ancient Chinese Proverb

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Your work is to discover your world and then with all your heart give yourself to it.

-Buddha

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Yea, verily, let your Will to Love burn eagerly toward this creation in yourselves of the true Life that rolls its waves across the shoreless sea of Time! Live not your petty lives in fear of the hours! The Moon and Sun and Stars by which ye measure Time are themselves but servants of that Life which pulses in you, joyous drum-beat as you march triumphant through the Avenue of the Ages. Then, when each birth and death of yours are recognized in this perception as mere milestones on your ever-living Road, what of the foolish incidents of your mean lives? Are they not grains of sand blown by the desert wind, or pebbles that you spurn with your winged feet, or grassy hollows were you press the yielding and elastic turf and moss with lyrical dances? To him who lives in Life naught matters: his is eternal motion, energy, delight of never-failing Change: unwearied, you pass on from aeon to aeon, from star to star, the Universe your playground, its infinite variety of sport ever old and ever new. All those ideas which bred sorrow and fear are known in their truth, and thus become the seed of joy: for you are certain beyond all proof that you can never die; that, though you change, change is part of your own nature: the Great Enemy is become the Great Ally.

--Aleister Crowley

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There is strong shadow where there is much light.

- Johann Wolfgang von Goethe

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We find comfort among those who agree with us - growth among those who don't.

-Frank A. Clark

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I will try to share some more over the next few days. I would like to hear some of your favorite quotes as well. This could be fun, feel free to leave your favorites using the comments link below.

Beauty

Ahhh..., the Beauty of the written Word. My last post reminded me of the deep reverence I’ve always felt for the Logos of humanity, the poetry and prose which exemplifies the Spirit of Man. Just for fun I think I’ll dig out some of my old notebooks and use this space over the next few days to share some of my favorite quotations which have always been a great source of inspiration for me………..See you soon.

Life Lessons

Chronic illness definitely forces one to be a bit more introspective. It’s a common aphorism, “that “everything happens for a reason”. I’ve often felt the need to attempt to understand what lessons the Holy Guardian Angel was trying to impart to me through this long battle with chronic illness? I’m a long way from having the definitive answers but was touched by the following quotes, which I recently found online from the beloved Ann Davies,



"Reexamine yesterday and recognize that everything that happened was a blessing beyond description. This is true whether you lost the love of your life, whether an illness left you disabled, your business failed, etc. It was a glorious experience because it was part of the process of becoming. Life is not static. It is coming through rough periods that brings you to glory and fulfillment. Without yesterday's sorrow you'd be incapable of tomorrow's joys. However, with some of us tomorrow's joys might take several incarnations to experience unless we get busy right now and make them our real tomorrows, which it is in our power to do. Remember that.

We must re-examine our reactions to yesterday, to the past, and affirm that the past has deepened the cup of our capacity to love. It gave us insight. It taught us how to walk instead of fall. It taught us how to see things we would not otherwise have seen. Therefore it was well worth it……”

Progress Has Slowed Down

Still enjoying golf, though my progress seems slow at times. There have been times when I haven’t had the energy to continue regular, consistent practice due to feeling ill, which I’m sure has slowed me up some, but I can see improvement which is the main thing. It’s definitely a challenge, which is a big part; I’m sure, of why golf never gets boring. Looking forward to this weekend when my wife, my Dad, and I will take part in a golf tournament :-) It’s a “Midnight Madness” tournament which means the last nine holes will be played at night with glow in the dark golf balls, should be great fun. The tournament is held at Southridge Golf Club.

Have been a bit discouraged with the Chinese Herbal Medicine Protocol lately as it definitely is not working as well as it did the first couple of months. I have been having a couple of days a week were I simply don’t feel well at all, tired, achy, absolutely no energy. In all fairness though I have to admit until real recently I haven’t been taking the herbs real religiously due to becoming discouraged with my health again and the cost of the herbs being quite expensive and I felt I couldn’t really afford them at times. Plan on getting back on a very regular regimen of the herbs which I have done for the last week and will have my labs rechecked at the beginning of September and go from there.

Labs Rechecked

Had my three month f/u labs drawn again. The elevated liver enzymes improved slightly from last time;

ALT of 181 compared to 297 in Feb. and AST of  110 compared to 105 in Feb.

Results were faxed to Dr Zhang and I’m awaiting his advice.

I did not have the Viral Count repeated at this time since my medical insurance will not pay for a repeat check of the Viral Load this soon and the $500 cost of this lab test would not change the way I feel or the prognosis in any way. Have felt a bit better than I did in Feb. Still have a day or two each week were I feel tired, run down and achy but not as severe as back in Feb. Plan on continuing current herbal protocol until I hear Dr. Zhang’s current recommendation.

Golf Lesson

It is more satisfying to be a bad player at golf. The worse you play, the better you remember the occasional good shot. ~Nubar Gulbenkian, 1972

I'll shoot my age if I have to live to be 105. ~Bob Hope

My swing is so bad I look like a caveman killing his lunch. ~Lee Trevino

It took me seventeen years to get 3,000 hits. I did it in one afternoon on the golf course. ~Hank Aaron, 1971

I took my first golf lesson this past Saturday. I started hacking at the ball a little bit last summer, played a few rounds at a local 9 hole public course, all par 3’s which makes it a good beginner’s course to practice on. Of course, the golf pro on Sat. changed everything about my game, he’s trying to change my grip, my setup, and my swing, I’m sure he’d even change the way I tie my shoes if I would let him…lol..God knows I can’t argue with him since I have become increasingly frustrated as I’ve tried to teach myself to play. Without a doubt it has to be the most difficult of all things which look easy! I’m sure anyone who has tried golf for the first time would agree with me. I was definitely encouraged by this weekend’s lesson though as I went out and hit the ball better than I ever have on Sunday, though admittedly that’s still not saying too much. Played 18 holes on Sunday and scored a 100. That’s not as good as it sounds though, since we played on the aforementioned course which consists entirely of all par 3’s. I shot a 45 the first time throught the nine hole course and a 55 the second time through. Perhaps it's true what my step son always says, "9 holes of golf is fun but 18 holes is work". At any rate, my dad and I signed up for a series of 4 lessons so the plan is to take a lesson every Saturday for a month…..I can definitely see how one could become addicted to golf.

Dire Paranoia

It’s the end of the world as we know it and I feel fine.

Discuss here.

The Honeymoon Continues

I learned a new word today. My betrothed said it is Eternanublious ;-)

Ukulele Festival This Weekend!!!

This is enough to make one want to attend the New York Uke Festival this weekend. This is a sentence I never thought I would use, this guy is a virtuoso of the ukulele!!
Seriously, check out this video clip of a version of George Harrison’s, “While My Guitar Gently Weeps”, it’s actually quite impressive…Two Thumbs Up…..

Honeymoon

  I’ve been so busy of late I haven’t really had time to post here or anywhere else. The last few weeks have been awesome! On March 12th in a very moving, inspiring, heartfelt ceremony performed by Bishop Rosamonde Miller my love Linda and I were wed. Thank you Linda for always being there for me, sharing our lives together has been the happiest days of my life.
  Linda and I just returned home from Arizona this past Sunday. Watched some MLB Spring Training games at Scottsdale Stadium. We enjoyed the sun, ballpark, and hotel swimming pool, it was a great way to welcome the Spring. The highlight of our trip was however, without a doubt, the trip we took a little further north to Sedona, Arizona. The hiking we enjoyed among the massive red-rock formations was stunning in it’s beauty. Simply awe inspiring.
  
  

www.flickr.com RegentLynx's Sedona, Arizona photoset

Led Zeppelin Legends Reuniting?

First noticed this on Ross Halfin's blog, Page and Plant to reunite? I know a lot of Zeppelin fan's who don't care that much for Page and Plant's subsequent work but I really loved No Quarter: Jimmy Page & Robert Plant Unledded, Walking Into Clarksdale et al.