My first post. It’s great to have found this group. It’s no fun on other forums getting flamed by the big pharma stooges for having an open mind about health care.
This is going to be long-winded, but a forum veteran pointed me here and suggested I tell of my tale.
So here's my story...
Like others here I was told by several physicians in the 80s that my liver test showed elevated function, but there was no cause for concern. Finally, about four years ago, my then general practitioner finally tested for HVC. From the beginning my liver function tests were bad and Peg interferon was immediately recommended. Being a genotype I, and after doing some research, I decided to resist interferon treatment. It didn't seem like a 20% chance of success with a high probability of recurrence was worth the trade-off in side effects and the risk of permanent damage.
I had a great GP who supported my decisions and related the story of one patient who Pegged up and is still suffering from depression almost 2 years later. I just read a new study that indicates success with Peg "Interference" across all Genotypes is currently at 50%. I like the description Lloyd refers to: "A drug looking for a disease to cure."
Early in 2005, I had a GI bleed in my stomach/esophageal area. It was pretty easy to stop with a quick outpatient procedure, but alarmed them enough to point me towards the transplant list. This, even though my MELD score was less than 10. Another factor in that transplant decision was revealed in a CT scan. They detected lesions on my liver, and were worried they would become cancerous. They wanted my liver right away before that happened.
I'm bouncing around here a bit but I hadn't mention that immediately upon hearing my diagnosis, I started researching alternatives and found Lloyd's book and site, I also read several others including Stephen Bruner's. I embraced the programs and started weekly acupuncture.
Back to the transplant list…. The evaluation is a six week process. Toward the end of the evaluation, they took another CT scan and it showed that the lesions were “less conspicuous”. My hepatology decided to wait 90 days and do another CT scan. The next one showed no evidence of the lesions.
I credit that to Lloyd and Bruhner.
The next incident was a spontaneous bacterial peritonitis (SBP), a very serious infection which starts in the fluid backed up into your ascites (the adominal cavity around your organs for those who are new to HVC). When in the hospital being treated with antibiotics, I was told that it would probably have killed me within a few weeks. Within days or hours, it would have spread to a heart valve and trashed that.
I dodged a lethal bullet on that one.
I've since found that if the heptologist had followed standard protocol, that could have been avoided. I've read that standard protocol indicates that a bleeding varices is a strong indicator of the possibility of, and significantly raises the risk of developing SBP. Patients are supposed to be put on a mild diuretic and a low dose antibiotic to prevent that. I was prescribed those drugs after I was almost killed by not having them. Go figure.
The infection occurred last August ‘06. When I first got out of the hospital, I felt great. Within weeks I'd developed 24/7 abdominal discomfort of an intensity that would drive the majority of the population to the emergency room. Nausea, cramps, gas pains, bloating, burning pains, etc. I just learned to play hurt, taking an Oxycondone when it got really bad.
During this time I also first detected a gradual decline of my energy level and by February 07 my quality of life was on a steep decline. If I had to put a number on it, I’d say my energy level was 60% of “normal”.`You are
Then someone told me about Fucoidan. I started taking a form of Fucoidan developed by the Russians called Modifilan. For those who haven't heard of it, Fucoidan is the beneficial part of brown seaweed harvested off the NE coast of Japan. It is stripped out of the stem and processed into capsules. Gonzo nutritionists would recognize Kombu and Wakame, two varieties of those brown seaweeds.
Modifilan was developed by the Russians when they were desperate to treat Chernobyl survivors for the toxic effects of radiation poisoning. Fucoidan has been observed by Japanese researchers, in the lab, killing fast-growing cancer cells in 72 days. It does that through a process of apoptosis, meaning the cancer cell disintegrates into membrane.
Here's the kicker: the day after I started taking Modifilan virtually all of my abdominal discomfort disappeared. That's all I can tell you. Almost nix, nada, zero, none. That has continued to date. My MELD score, which was 17 in Dec, dropped to 15 last month. Could be "normal" fluctuation, won't know until the next test.
Now to my latest adventure: Hyperbaric Oxygen Treatment (HBOT). I learned of this only a few weeks ago when several people from different circles who knew my condition started asking me if I was aware of it. Turns out there was an interview on local public radio with a physician from New Orleans who is a huge proponent of the treatment. The subject of the interview was Dr Paul Harch, who just released a book title “The Oxygen Revolution”. I will post the link to the interview at the bottom. The book is at Amazon. A must read for those with aging parents. Lots on stroke, dementia, heart disease etc.
It was a call-in show. A woman called in and asked if HBOT had been used to treat hepatitis and liver damage. When I heard Harch’s answer, I immediately paused the interview and started looking for a clinic that would allow me to try HBOT.
I can't tell you a lot so far, but many might find this interesting. Modifilan cleared up my abdominal discomfort but again, so far hadn't done anything for my energy level. I had to nap about 2 hours every day, I couldn’t even mow the lawn for more than 15 minutes, I would get severe dizzy spells that included hot and cold sweats would have to lay down until it passed. My day was done at 5...I mean DONE. Couch time was about all I could do.
I had my first HBOT treatment last Thursday (6/21). My protocol is for a series of 40 sessions, 1 hour each day for 40 business days. I was treated again on Friday.
This past weekend after two treatments my energy level not only improved, but returned to as near-normal as I can recall. I over did it Saturday, 7 AM to Midnight, but without any indication that I was even tired let alone suffering from chronic fatigue. I wasn’t just awake, I mowed the lawn, cut wood, planted a tomato bed, shoveled a bunch of landscaping rock.
Sunday was same, although I took it a little easier. (US F1 Grand Prix and the US Open.)
My wife was stunned. I am stunned. I’m sitting here on the short list for a liver transplant and feeling as near-normal as I have in five years. My wife says the my appearance changed almost overnight.
If a liver came up today, I’d have to refuse it pending the REAL outcome of the whole protocol.
To me HBOT is stupidly simple. We all know that Band-Aids have holes in them because wounds need oxygen to heal. When being treated with HBOT, pure oxygen is pumped into the chamber, and then the pressure is raised to 1.5 times (in my case) normal atmospheric pressure. The premise is that the pressure moves highly oxygenated blood further into your body than your compromised circulatory system can.
Please note that I don't expect HBOT to rid me of HVC. However, in all the reading I've done about the subject, I am 120% sure that I will derive some benefit from it. The FDA approves HBOT in 14-15 indications and insurance companies pretty much adhere to those in terms of coverage. HBOT is most often used to treat neurological disorders especially in children. Treating stroke victims is big, wound healing is big. (Michael Jackson had a chamber. I’m sure he was hoping to grow a new nose or melt the rest of his face off; but more than likely, it was prescribed to assist in healing the effects of all his surgeries.)
My hope going in was to simply recover a bit of my energy. That happened in two days. Now what?
I still have more questions than answers. And many of those answers won't come until late August when I'm due for my next blood work. Coincidentally, that coincides with the end of my first protocol, i.e. 40 sessions in the chamber.
Is what I'm feeling temporary due simply to breathing oxygen for an hour a day? I don't know and frankly for now, I don't care. I’ll take the normalcy while I can get it. HBOT is safe under clinical supervision and there are NO side effects. Accidents happen with O overdose when people buy they're own machines and exceed recommended protocols. I believe that now, machines they sell for home use can't exceed 1.5 times atmospheric pressure.
Another bonus for me is that the M.D. who conducted my initial consultation is about my age (I’m 55, he’s 60), and has been a general practitioner for his entire career; until he decided a few years back to move his practice towards alternative medicine. Hard to find those types.
He also recommended mega-doses of vitamin C with instructions on how to calibrate the dose, acidophilus after every meal to aid digestion, and a very high-quality protein supplement derived from whey. When your digestive system gets as screwed up as mine, getting enough protein becomes an issue. (Yes I am aware of the relationship between excess protein and ammonia.)
Here's one of my "quack" thoughts… Anyone heard of Accupoint Injection Therapy? It’s a procedure that injects herbs directly into the target meridian during acupuncture. My brother lives in SE Asia and tells me they’re getting excellent results in treating HVC with it in Thai clinics.
What if HBOT could work the same way, i.e. the pressure moves the remedies we are taking deeper into the affected areas where they can do more good? Does that seem far-fectched? Maybe, but not to this kid.
At any rate, I’m enjoying the experience. After two days in the tank, I watched the documentary “The New Medicine”. After seeing that, I ordered a home study course on Qigong from Amazon. Avg Rating 5 of 5 stars, including some very creditable people. The chamber is a great place for meditation and breathing excercises and I need to learn more. (I’ve “dabbled” with Yoga in the past but it’s time to get serious.)
BTW, that “The New Medicine DVD (you can Google and purchase it.) should be required viewing for every health care consumer in the US. Amazing stuff on the resurgence in interest of the mind/body connection in health.
Here is the link to the interview. Look for the 5/17 show with Larry Meiller interviewing Dr. Paul Harch about HBOT. You have to be a donor to download, but you can stream the interview online. After that, go to Harch’s site mentioned in the interview by him and watch the video of the Curt Allen case. If you aren’t impressed, I might suggest a crowbar to open your mind a bit.
http://wpr.org/webcasting/audioarchives_display.cfm?Code=mlr I’d be glad to answer any questions, but remember that I don’t have many of the BIG answers yet.
I’ll keep you posted on how it’s going.
Cheers.
Doug