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Newbie With Initial Stats Want To Start Regimen
February 01, 2002

Hola Lloyd Wright,

I am writing to post my initial test results, recount my experience with the A.M.A. bunch and so begin my new path in this life and add to the knowlege base out here for everyone.  I think it will be particularly helpful for us newbie's to share our stories to help each other make the adjustment mentally & physically to this new crossroads.  So bear with me if this initial letter is a bit wordy, it's for the other people that will be following me into these doors to whom every scrap of info might be relevant.

I was diagnosed with Hepatitis C in November, 2001 after going to a walk-in clinic because of what I took to be a case of food poisoning.  I had been in pain for about 4 weeks, and had already self-diagnosed my symptoms as a swollen liver also causing pressure/pain on my spleen too.  This disruption had all occurred within 30 minutes of having consumed a bean burrito with cheese & guacamole with some m&m's for desert.  So I thought that some bad guacamole had produced food poisoning in my liver.  I explained all this to the doctor and she felt my abdominal area and checked my posterior for some sort of colonic prb.  She then prescribed a liquid for stomach lining irritation (which I tried once & threw away).  At least she had some blood work done because of my insistence that my pain was in my liver/spleen.  While I had been in pain all this time, I instinctively avoided alcohol, fried foods, sugars and junk food, and drank lots of water (bottled).

I am already a vegetarian and had given up cigarettes about 7 years ago, and my weight is 195, height is 6'2", so I was already close to having a pretty good lifestyle. Anyway, I tried to keep walking and active thinking that would help the pain eventually, and a few days after the clinic visit, I passed a rather foul looking blackish stool movement and have felt quite good from then on.  I have been a computer contractor for years, so if I am run down, and a in a bit of a fog I always ascribed that to my work and sometimes hellish commutes and constant moving to follow the jobs.  Anyway, I live within walking distance to my job which I love now, so that part of my life is so much better now, and I have the love and support of my wife and 4 year old daughter, and the rest of my family, whom give me all the inspiration that I need to stay positive and keep everything in perspective

Rule # 1, don't freak out.

The clinic didn't call me back, and when I called to get my results, the nurse informed me over the phone of the positive result for Hepatitis C, which she assured me was no big deal and she then gave me a referral me to a GI specialist.  ( I had already tried to get an appt with a GI spec, but they were all backed up ).  The doctor at the clinic never called or followed up on me, I have done all my research online and dealt with all the initial trauma and fears that go with the discovery process by myself.  As a computer tech that had worked in major hospitals in the Fort Worth area, I had no illusions the A.M.A. world would have any special concerns for my situation.  These hospitals are just very big corporations with insane levels of paperwork, staffed with overworked technical people who are lorded over by administrators and doctors who are produced by hellishly elitist schools to almost completely disregard the observations and concerns of their own nurses and patients.

The GI spec did the 2nd, more accurate test and I knew enough by now to ask for a full battery to test for other co infections ( I had them check for aids too- all clear ).  Your site Lloyd is just the most helpful in spelling all this out - I can't tell you how much your work means to me and I am sure all the others.  I also had my wife get tested, as that was my biggest fear that she might have it from being with me.  We have a monogamous marriage and have decided that we don't need to use condoms if she's OK now - we've been together about 7 years.  She was tested OK, which took a huge burden off me.  This new doctor seemed pretty rational and informed at first, and I'll give him big points for making a good effort to allow me time for questions and discussion of this disease.

Rule #2- Feel out your doctor's opinion on homeopathic. Don't let on that you heavily dislike the chemo approach up front.- - more on this will follow below.

However, after I felt him out with some mention that I was in research mode on homeopathic approaches, I got the quick affirmation that his mindset was strictly Peg-Interferon with Ribavarin as the only option he would consider valid.  Fine, I thought, I need this extra blood work done for now so he can have his opinion and I decided to go ahead with the liver biopsy although I had read some people's ( I later read your acct in your book ) bad experiences with that.  Because of you I knew to be sure that they would check for Iron retention at the same time.  Last week 12-23-02 I had the biopsy done ( deluxe- with local anesthetic ) and a 'mild' painkiller in the I.V..  He had to stick me twice, but no complications from the procedure so far.  I definitely think my liver inflamed some more and I have felt more run-down again since then, but I think this will pass with a good homeopath regimen.

At the end of the biopsy, I set it up with him to see him an a week to review the results, and he asked me at that point if he should sign me up for the Peg Interferon & Ribavarin routine as there is a waiting list now ( I guess people are dying to get it yuk yuk - my joke ).  The I told him that no, I thought I'd wait until the next week appt and go over my homeopathic research as well as hear his case for chemo in earnest at that point.  OK sez he, and I saw again signs of his prejudice against the homeopath, but I was determined to give him a fair hearing and hope for some objective input from him on my research.

I got your book in a devoured it in 2 days - a first rate read and inspiration to all us. Good lord, they can't kill you with a hammer.  I think I'm tougher than cheap nails, but if you kept a comin' after all that, I got no problems compared to your scenario.  When you feel dying and you know you're pissed, anything less than the truth is an affront of apocalyptic proportions.  Thank you for standing up to those leech-hangers and telling the world the truths you've paid for with large pieces of your soul.  You can count on me to fight beside you in my own way.  ( I'm a web-application developer- more on that later ).

Anyhoo - this last wednesday 01-30-02- I go to get my prior full blood work and biopsy results.  They told me on the phone before that my blood work had no new surprises, but it turned out that I had been exposed to Hepatitis B in the past ( that damn burrito? ) and so I'm supposedly immune to it now, is that so?  Question: And they said I should get vaccinated for Hepatitis A, - I've read that too, do you agree?

** Full Blood work Highlights:
Phosphorus- 2.2 'low'
AST (SGOT)- 44 'high'
ALT (SGPT)- 61 'high'
Hep. B (S AB)- 150 'high'
INR- 1.1 'low'
Quantitative PCR Assay- SuperQuant for HCV RNA:
"greater than 5,000,000 copies/ml" "equivalent to 2,000,000 IU/ml"
(shit la merde!)
Hepatitis C Genotype:
1a variant
"The sequence of this sample is consistent with minor variations not associated with any subtype"

Question: is the above PCR assay, is copies/ml the standard most people in the states use ? If so 5,000,000 is the highest I've seen reported so far. My years of stressful work and drinking beer would have been a heavy contributor.

**Everyone - Don't drink on top of this, I'm proof that alcohol promotes viral replication. I gave up all alcohol upon my diagnosis. My doctor had said "you can drink, just don't do it once your on chemo." Don't believe it!

Question: Are there any other items - not flagged, that I should be paying attention to? I I can fax you my report if you need it.

** Biopsy Highlights:
Final Pathological Diagnosis:
Chronic Hepatitis, Clinically Hepatitis C
Moderate to severe activity (grade III-IV) (shit!)
Septal Fibrosis (stage 3) (not good, not catastrophic)
No abnormal storage iron (good)
Operative Findings: Grossly normal appearing liver tissue (tan in color)

Microscopic Description:

Two intact core needle biopsies are examined. There is overall preservation of hepatic architecture although distortion is evident centered around the portal tracts. There is a moderate to marked inflammatory cell infiltrate which circumferentially extends into the lobule in most portal areas. This is associated with periportal fibrosis with focal portal bridging, a pattern confirmed by Trichrome stain. Within the lobule, piecemeal necrosis and Councilman bodies are evident. Bile ducts are unremarkable. The inflammatory infiltrate consists primarily of lymphocytes with scattered eosinophils and histiocytes. Iron stain shows no iron deposition.

Question: He said the above II-IV rating was regarding "inflammation".  Since 4 is the highest this I presume is quite bad.  What can I do to reduce inflammation?  I'm not in pain and don't feel like I've got the "baseball under my ribs: feeling - just a perceived fullness in that area.

Question: The Septal Fibrosis looks pretty high to me too, ( scale of 4 everybody ) what can I do specifically to fight back fibrosis ( I'm a 3, isn't level 4 considered outright ceros is? ).  Well Mr. Wright sir, I went to the doctor to get those reports, and have an honest dialogue about options.  I made a point of being real courteous and hearing him out first.  He reiterated that his only card to play was the Peg Interferon/Ribavarin combo for 12 mos.  Oh, and an American Liver Foundation book on how to live with Hep C and chemo.  I then asked him about nutrition, as I figured that any doctor would have at least an appreciation of nutrition and liver function.  He said that beyond a balanced diet, that there was nothing special to do.  So I said since the body has fairly complex needs in that arena, I hoped he would refer me to a nutritionist for advice on that only.  No dice.

He then launched into his tirade against homeopathic approaches, saying that of the "hundreds" of people he's seen try it, people may have felt better, but no one produced any big results.  This is the same man who just told me his practice had only been established for less than a year I think, maybe he was counting his University days.  I think he was exaggerating more than a bit.  He did mutter something about well, maybe some of the people perhaps just had not reported back to him on their results. He also had no data on what "those people" were using.  He said if I have any proof from anyone that "these approaches" work, he'd love to see it.  But by his tone I knew it would all be dismissed by him as unreliable information.  Hey - would you like me to send the fool your reports?  He also advised me to stay out of internet message boards!  So I told him that as an individual with this disease that I considered other people in my boat to be an extremely valuable and credible source of information ( I delivered that one with all the theatrical understatement I could muster ).  I also asked him "what if I'm taking the chemo treatment, and during that time, I lose my job & insurance?"  He said , oh, well- there is some programs by the drug companies that "might" help.  Like Schering-Plough's "commitment-to-care" program I asked?  Yes says he. "I hear you would have to be a complete basket case to get that" sez I.  He agrees. I don't say anymore on that subject but my research suggests one of the worst things you could do is start chemo then cut it off, your viral load will almost definitely soar.  Mine's high enough.

So I told him thank you very much, but based upon my own research on the net, and the fact that even his most optimistic data about Peg/Rib accepts a 50% failure rate ( higher failure rate for geno 1a's ), and the high incidence of damaging, long-term side-effects of chemo- ie: higher viral loads, bleeding colon, diabetes2, etc, that I felt I had nothing to lose by trying a homeopathic regimen first.  I then asked if he would arrange for me to come in and have blood work every 3 mos to monitor my progress.

He got real peculiar then, and explained that "he was extremely uncomfortable doing any lab work for someone not in treatment" ( his treatment ), and that if I insisted, come back in 12 mos!  He said every 3 mos wasn't practical.  So I asked a little later, how often they do blood work if someone is in chemo.  He said 3mos, 6ms, then 12 mos.  I'm not the sharpest tool in the shed, but I know when I'm being bullshited.  He said "I don't want to quantify these non-clinical regimens". A little later he said, "oh, don't think I don't want to document something new" uh-huh.  He was dancing all around this.  That's why I came up with the rule about not letting on to the doctor about any keen interest in a non-chemo regimen, you might get the bum's rush upfront or shabbier treatment.  I got my initial blood work and the biopsy, so they can kiss my ass.  I'll go somewhere else now for follow-up blood work. It would have been a lot of extra stress if I'd had to hop doctors while just trying to get my preliminary stats.  Also for anyone else reading this, not all agree on the need for a liver biopsy, I felt I am strong enough and my blood is coagulating well.  But it's always a crap shoot when you trust anyone to stick a spike into your vital areas.

But my story repeats the pattern that you brought up in your book.  The bastards refuse to keep stats on their own patients, conveniently run off anyone not on their wagon, ridicule any data contrary to their perceived wisdom, and then state with all sanctimony ( and a straight face ) that no clinical data exists to back up homeopathic regimens.  Well fuck these fools, I build database-driven websites for a living.  Guess what I'm gonna do?  I 'd like to build a site where us AMA refugees can all go, submit our background info, initial and follow up stats, and regimens followed.  We'll build our own damn stats and heal ourselves.  They can hole up in their ivory towers all day and denounce it, but the bald truth will be hanging out there for all to see.  Let me know if you could use my help on your site, or if you'd like to suggest the standardization of information I should try to go with.  I may sell advertising on the site someday, but I don't care if I make a nickel on it.  I can host it on my home server (1mb bandwidth up & down, coldfusion with sql server backend).

Right now, I'm pretty up on your minimum regimen suggestions, so I'd like to see if you might suggest any specific regimen considering my viral load, stage 3-4 inflammation and stage 3 fibrosis.  I am felling really pretty good, I am a vegetarian and since about 6 weeks ago went all organic.  I am drinking bottled water with a neutral ph, gave up iron frying pans, eliminated hydrogenated oils, eat just a little fried food, cold-pressed safflower oil or extra virgin olive oil.  I'm already taking a quality Silymarin extract, 500 mg 3 X day, vitamin b complex, an herbal detox tea (not milk thistle, the active ingredient eludes me, starts with an 's'), no man-made vitamin A, no nutmeg or sassafras, and walk everyday to and from work, 30-60 minutes a day.

Jesus, this is the most I've typed besides computer code for years.  I hope all this detail helps other newbies.  Thanks for all your time.  I expect to placing my first order after hearing back from y'all.  You're a real prince, Lloyd, if I can help you with your site, just whistle.  I'd be glad to further your message if I can.  We'll talk more after this initial load.

Life during wartime..
Bruce Rojas-Rennke
Denver, CO, USA

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