Saturday, July 26, 2014

World Hepatitis C Day New Orleans

July 26, 2014
  • Location: Audubon Park
  • Address: 6500 Magazine St, New Orleans, LA 70118
  • Times: 10:00 am - 1:00 pm
  • Admission: Free
  • Visit Website
World Hepatitis Day is part of Avita's campaign to raise awareness about Hepatitis in Louisiana and worldwide.

Come join us on The Prowl For A Cure for a fun-filled pet friendly day at the park featuring local food, education, games, door prizes and entertainment. Including Free Hep C & HIV testing provided by NO/AIDS Task Force. 
Special guests include the 610 Stompers & Gina Brown! 

Did you know that 3 out of 4 people infected with Hepatitis are unaware that they have it?

In 2008, the World Hepatitis Alliance founded World Hepatitis Day as an answer to the lack of awareness centered on Hepatitis. Since then the event has grown to be celebrated in 136 countries and has even broken Guinness World Book records!
Last year, Avita hosted the first World Hepatitis Day event in Louisiana, accounting for 34% of participation in the US.

To learn more about Hepatitis and World Hepatitis Day, check out our Hepatitis Infographic.

See ya'll there! 

Monday, June 30, 2014

So now, there is pretty much a cure out there for Hep C - and others on the horizon that probably work even better!  However, as of now, no one can afford it.  Medicare and Medicaid, as well as private insurers, were not quite prepared for a 90-95% success rate Hepatitis C drug to hit the market.  And the tens of thousands of folks wanting to do one of the newer treatments - ones that actually work, have much less side effects, and a much shorter treatment time, are all lining up.

Meanwhile, there is LDN - Low Dose Naltrexone -

Since my integrative doctor no longer takes Medicare,  I have been unable to have the regular Hepatitis C labs and viral load tests done as regularly as I had since early 2009 when I began taking 3 mg of Low Dose Naltrexone.   However, my rheumatologist over at LSU ran basic labs, a liver panel and a viral load test back in February 2014.  As I had posted last, everything was pretty much the same as they have been - normal liver enzymes and still low viral load - thankfully.

I plan on going back to my CAM doc but I need a few hundred bucks to do so.   But I am seeing a new gastro next month and am hopeful that she will be as supportive as my integrative doctor is/was.  Or at least more supportive than my last gastro who refused to run any viral load tests as "LDN is not used to treat Hepatitis C and will not affect viral load", he said.   And he was less than supportive when I showed him the results of my first labs done after being on LDN for 3 months.  Viral load dropped from 1,600,000 to 48,000.  And has remained below that in the five years since.  Usually 11,000-36,000 range.

At any rate, until next month and new labs, here is:

Treating Hepatitis C With Low Dose Naltrexone

Updated it slightly and removed any reference of increasing LDN dosage past 3 mg.

In the rescue cat side,  Cayenne, my 16 year old white Siamese mix, went into liver failure last December.  His ALT was something like 1375 and all of his other numbers were astounding.  I put him on Denosyl (SAMe) and Marin (Milk Thistle) and he improved and put weight back on.  Then, a few months ago, he was not doing well.  The vet said that he was dehydrated and had an enlarged kidney.  I was sent home with a bag of fluids "to keep him comfortable" as none of us believed he would live much longer.   And he was so dehydrated that he needed sub-q fluids two times a day!  At any rate, surprisingly,  Cayenne is now getting fluids every other day.  He has gained weight again, is grooming himself and begs to go out for a supervised walk every day.  The vet thinks that as his liver heals, his kidney function has also improved.   I am thrilled - I have had him since he was 6 weeks old and been through everything with him.


Tuesday, February 11, 2014

Still here

Just letting you all know that I am still here - and celebrating 5 years Low Dose Naltrexone for Hep C! And will be posting again soon - am waiting for a replacement computer. My other one's hard drive crashed during the summer and I have been struggling to use my 2003 Katrina soaked one. It takes 20 minutes to go from page to page on it and is extremely frustrating. Will be adding some new posts soon! Got new viral load test - 34,284 - which is great. Since 2009, it has never been above 48,000 - and either seems to be in the teens or @ 30-35,000. And has never made the jump back to the million+ that it was pre-LDN. Anyway, much more to come - still waiting on a computer!

Monday, September 30, 2013

Mr Magoo - Rest in Peace

My boy Mr. Magoo, was put to rest last Thursday at my vet's office. He fought a hard, cruel battle against Oral Squamous Cell Carcinoma - but finally lost it last week. Magoo was my friend, companion and child for the last 12 years and I miss him terribly. One day I will return to posting on this blog - back in June, I was so excited to write about my latest LDN labs until I noticed Mr Magoo drooling as he watched me type. That is when I found the awful tumor underneath his tongue. Nothing has been the same since then.

Thursday, August 29, 2013

8 Years Later

8 years ago at this moment, the water started coming into my apartment after the shoddy levees constructed by the Corpse of Engineers failed in 58 places. And my mind went into the surreal. Not sure that it ever came back. Of the original 8 cats that shared that time with me, most are still here. Panda and Brooks passed away due to illness and Mama Minx perished months after the storm due to the wild dog packs that ravaged our city streets. 5 of those cats spent two weeks up in a closet without food or water until I could find a man with a boat to bring me to rescue them. I had escaped the house the day after Katrina with 3 cats - Panda, Cayenne and Rosemary. Mr. Magoo, Brooks, Woody, Sky and Tortie Miss are the cats that lived in that closet - the same closet that I escaped the neck high waters in. Mr. Magoo was diagnosed with Oral Squamous Cell Carcinoma two months ago and despite multiple treatments (including LDN) the tumor continues to grow and Magoo is now struggling. It won't be long now until he must pass over to the Rainbow Bridge. But my thoughts today are for the 1800 mostly elderly people who died that day - along with the 100,000 animals who died because they were left behind - and the countless tens of thousands of other ones who drowned in the streets. All due to the failure of the flood walls built by the US Army Corpse of Engineers. Memorial Video

Friday, June 28, 2013

4 Years Normal Liver Tests using Low Dose Naltrexone for HCV!

4 Years Normal Liver Tests using Low Dose Naltrexone for HCV!

I started using 3 mg. Low Dose Naltrexone in Feb/March 2009 and got back my first labs in  June of that year.   My Hepatitis C viral load had been at 1,400,000 and my ALT was at 174 - AST AT 90.   After 3-4 months of being on the LDN, my viral load dropped down to 49,000 and my ALT was at 23 and AST at 30.  That is when I started recording my lab results and progress.

Since that time, every lab test has shown liver enzymes within the normal range (maybe a point off of normal) and my viral load has remained low.

I consider myself as a human guinea pig - or that I have been conducting my own "clinical trial" using LDN to treat my Hep C.  I have more or less been using the same 3 mg. dosage - sometimes taking it every night or as now, taking it every other night.  I have been getting the same prescription from Skip's Pharmacy for the entire time, except at the beginning when I used the prescription that I got from Dr. Berkson - and that pharmacy used lactose as a filler, which did not work for me.  Skip's uses Avicel.

I had new labs done last week and saw my great integrative doctor, Dr. Kashi Rai at "For Better Health."  She has been my doctor since 2007 and is the one who steered me towards Dr. Berkson.  Since then, she has prescribed the LDN as well as ordered whatever labs that I needed for my "trial."  She is also a genius at reading lab work and how to correct any imbalances by using mostly supplements and diet - she will also prescribe medications if the situation warrants - but that is not the case for me. She also suggested that I change my ALA from Metabolic Maintenance (Dr. Berkson's recommendation - or a European sourced Lipoic Acid)  to Jarrow Alpha Lipoic Sustain - 300 with Biotin.   I fought her tooth and nail over this as it would be almost a sacrilege to go against Dr. Berkson!  But, she said that she had seen terrific results in other patients labwork - so I started taking it last November - during the last few months, was only doing 1 daily.  New customers to iHERB can use this code for a discount:  KOV896  -   All labs done since 2007 via Quest Diagnostics:

                                                New Labs June 2013

                                          06/2013                                01/2009

Alpha Fetoprotein -               3.8                                          5.2

White Blood Cell count        5.0                                           6.0

Red Blood Cell count         3.82                                          4.21

Platelet Count                     149                                          186

Urea Nitrogen - BUN           12                                            9

Sodium                              136                                          138

Potassium                         4.3                                            4.6

Chloride                           103                                           103

Calcium                           10.2                                          10.5 (H)

Protein total                      7.2                                           8.9 (H)
Albumin                           4.9                                           5.2 (H)                                                                                               
Globulin                          2.3                                            3.7
Bilirubin                         0.6                                            1.1
Alk Phospatase              54                                              72
AST                              30                                             99(H)
ALT                              31                                             174 (H)

Ferritin                          83  (not been taking IP6)             115

Iron, Total                    122                                            165 (H) 9/2009
Iron Binding Capacity  308                                             352  9/2009                
Saturation                     40                                              36 9/09

HCV RNA                13.393                                        1,280,00

Lymphocytes Subset Panel

                                      06/2013                                09/2009

%CD3 (mature T cells)     76                                       77
Absolute CD3+ cells       1552                                    1008
%CD4(helper cells)          58                                       52
Absolute CD4+cells         1162                                   720
%CD8 suppressor t cells  20                                      24
Absolute CD8 cells          396                                    333
Helper/suppressor ratio    2.94                                  2.17
%CD16+CD56 NK cells   10                                      10
Absolute NK cells 16+56  207                                   128
%CD19 (b cells)               12                                     11
Absolute CD19+             248                                    134
Absolute Lymphocytes   2033                                  1308

TO BE CONTINUED!  bear with me folks - dealing with cat with cancer dx - and trying to post complete labs

Tuesday, June 18, 2013

Low Dose Naltrexone website - Why HCV is not listed?

I recently wrote to the folks who have the Low Dose Naltrexone site and asked why Hep C is not among the conditions listed that improve with the use of LDN. And this is what I was told:

We were delighted to hear of your excellent control of Hep C using LDN alone.   The reason why Hep C is not on our list relates to Dr. Bihari's past experience in his active practice (Bihari was the discoverer of the human uses of LDN). He did not have your experience with dozens of his patients who were being seen for HIV (and thus were all on LDN) but who also had Hep C.

He did use LDN in the therapy of Hep C, BUT only as a secondary treatment.Hypericin and LDN for Hepatitis C.

Hypericin and LDN for Hepatitis C

"In a study of St. John's Wort in 15 patients with HIV in 1990, Dr.Bihari had accidentally discovered a significant benefit to liver function in two patients with hepatitis B (whereas there was no improvement in HIV markers). Bihari then began to use St. John's Wort in his private practice to treat hepatitis B and hepatitis C - patients with the latter responded well, the former not at all. Since 1995, Dr. Bihari has been able to use a very highly concentrated form of hypericin, the active ingredient found in St. John's Wort, called HY2 (manufactured by Pacific Biologic in Clayton, CA; 800-869-8783) in the treatment of people with hepatitis C. It is given along with LDN, to enhance the immune response, and in many cases with ribavirin, as an antiviral. Over 60 patients have been successfully treated for hepatitis C in Dr. Bihari's practice. (but what does this mean?)

Dr. Bernard Bihari has put out the results of an interesting observational study he conducted through his practice in New York. The study involved fifteen people with Hepatitis C, seven of whom are also HIV+. Each day, participants took between 2 and 7 capsules of HY2 (depending on each person's ability to tolerate the HY2) and 3mg of naltrexone (ReVia), an opiate blocker. HY2 is a form of St. John's Wort, a naturally occurring herb. Hypericin, a chemical derived from St. John's Wort, has shown strong anti-viral activity in the test tube against a wide variety of viruses. Each capsule of the HY2 used by Dr. Bihari's patients contains 750mg of St. John's Wort, with a 220% increase in hypericin content (2.25mg hypericin) over standard St. John's Wort preparations. This same HY2 is available at the PWA Health Group.

Dr. Bihari has followed his patients for up to two years. In almost all cases, Dr. Bihari's patients' latest lab reports show normal or close-to-normal AST and ALT results. These tests measure the levels of enzymes produced by the liver. The elevated enzymes which all of the participants had at the beginning of the study are usually an indication of liver inflammation or damage. Many study participants were using milk thistle and/or thioctic (lipoic) acid, popular supplements that enhance liver function. Four participants added ribavirin to their regimens.

With these additional, varied therapies, and even the naltrexone, many questions remain. How much the HY2 contributed to people's successful drop in liver enzymes isn't entirely clear.

One person who stopped taking HY2 and took regular St. John's Wort instead showed an increase in enzymes until he went back to the HY2. When two other study participants stopped their regimens for a while, their enzymes shot up, then decreased again after going back on the regimen. We know that taking ribavirin alone can sharply decrease liver enzymes; but when you stop ribavirin, enzymes pop back up. The same seems to be true of HY2 and the other treatments Dr. Bihari's patients are using. It may be helpful to give your liver a break for a period of time.(?) But we don't know yet what will happen once these folks stop their regimen completely or whether anyone's virus will clear.

The experience was interesting but half of his patients were also coinfected with HIV and there really isn't much of a followup - I wonder if any of them achieved SVR? It doesn't seem so.  I wrote back to the LDN website folks to let them know that I was disappointed that LDN for HCV was not listed as a condition treatable based on Bihari's study on 15 people.

On another note,  George Henderson recently posted about Spirulina and how it brought about SVR in some HCV folks who were using it - I love George!!!!!   He is so far ahead of the rest of us.

Spirulina Platensis versus Silymarin in the treatment of chronic hepatitis C virus infection. A pilot randomized, comparative clinical trial.

Among the 30 patients who had been treated with Spirulina and completed the 6 months protocol, 4 patients (13.3%) had a complete end of treatment virological response. While 2 patients (6.7%) had partial end of treatment response defined as significant decrease of virus load of at least 2-log10 at the end of 6 months treatment. No virological response (non-ETR) (defined as no reduction of at least 2 logs10 from the baseline virus load) was reported in the remaining 80% of Spirulina treated group.   The High-fat Hep C Diet  

  So perhaps some of you might want to try adding Hypericin (and not just "regular" St. John's wart to their regimen along with Spirulina and report back? If I had the bucks, maybe I would again be the guinea pig as I have been with LDN - hell, with over 4 years of NORMAL LIVER ENYZMES and over 4 years of LAB RESULTS via QUEST LABS - and over 4 years of using the same 3 mg  capsules of LDN provided by Skip's Pharmacy -  I should qualify for a "clinical trial?"