Sunday, February 15, 2015

Changes 2015 - Harvoni?

Hi all, sorry for not updating in so long!  As mentioned previously,  my great Integrative doctor who ran all of those comprehensive lab tests ( including the many HCV viral load tests) quit taking Medicare in 2013. So I could not find the cash to go back to her.

And I lost two of my long time companions recently; 13 year old Rosemary left me right before Thanksgiving. ..the vet found a tumor in her bladder..I had to let her go soon afterwards. And my 17 year old heart, Cayenne passed over on January 16, the day after my 62nd birthday. I miss them so.

Now, moving forward, I recently saw a new Gastrointestinal do over at LSU. He was very excited about Harvoni and pretty determined to get as many of his clients on it as possible. So I had a lot of blood drawn and many, many tests done, including a Fibrosure test.

Now I had not had any new labs done since about a year ago and those were pretty good. Liver panel ok (tho ALT/AST slightly elevated due to a Project Runway girl's night party the night before where wine was served) Viral load was @35,000 and all other regular stuff was fine.  Basically the same results as I've had since early 2009 when I started using 3 mg.  LDN (Low Dose Naltrexone)   My 2003 liver biopsy had shown "minimal inflammation. )

But despite knowing I have had HCV since 2002 (and probably been infected since the early 1970's) I was nervous.  Having a low viral load and pretty much normal liver function tests was good, but having another liver biopsy or a Fibrosure test would reveal the true shape that my liver was in.

Also, as I was unable to get a prescription for the compounded LDN that I had been using for most of the last 5-6 years (from Skips Pharmacy) I switched to the 50 mg Naltrexone tablets (from India) and began mixing my own LDN.  I also switched from taking it at night and started taking it in the morning. I have had terrible sleep issues these last couple of years due to the seemingly unending financial stress.

At any rate , the partial labs that were mailed to me (part of Fibrosure equation)

HCV RNA: 37,934
ALT: 35 (0-40)
Bilirubin Total: 0.4. (0.0-1.2)
GGT: 26. (0-60)
Haptoglobin:  64 (34-200)
Apolipoprotein A 1:  187 (110-205)
Alpha 2 Macroglobulins QN: 299 (110-276) H

Fibrosis Score: 0.32  (0.00-0.21) H
Fibrosis Stage: F1-F2  (0.00-0.31)

Necroinflammat ACT. Score: 0.19 (0.00-0.17) H
Necroinflammat ACT. Grade: A0-A1

So really not bad. Note that my fibrosis stage is only one point over F1.

But in the Harvoni scheme of things, these results will disqualify me from initially being approved to get it. My doctor told me about appealing and all this other stuff. My next appointment with him is in a couple of weeks and I will find out more. Along with getting the rest of my test results. ..CBC, LFT's, etc.

I did get the iron/ferritin tests back. All in range with Ferritin at 73, which is cool. (20-288)

My doc is at LSU Health and he is an Attending there so he's pretty familiar with the red tape involved. But it's like pulling teeth to get your labs from them. The nurse did call the other day to tell me that the doc wanted me to retake the HCV RNA test. I guess despite me telling him that it had been low since starting LDN back in February 2009 (Valentines Day) he wasn't really listening. Maybe he will at the next visit. I would also imagine that the low VL might raise some eyebrows among others along the way.

Overall,  I'm pretty pleased.  The stress of being in constant poverty, the illnesses of my companion cats, being out of many supplements,  not eating as well as I should (except for gluten free!) and probably indulging in a bit too much Chardonnay,  has not been very conducive for overall health.  But having the Low Dose Naltrexone on board, whether compounded or mixed from 50 mg Naltrexone tablets,  has been a blessing for me. And one that I plan on using for the rest of my life, virus or no virus!

At this point, I still am not in that big of a rush to treat. There are even more HCV drugs in the pipeline with even more promise. ..shorter treatments and supposedly 100% cure rate.  Hopefully in the next few years there will be 100% cure rates for all genotypes. ..and that Hepatitis C will be eradicated!

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