I haven't posted in awhile as nothing really new has been going on - and I hadn't had any new labs done until recently.
ALT: 28 down slightly from 30 it was in the Spring.
AST: 27 down from 33
HCV Viral Load - 36,902 up from 16,500 last time. I am not really concerned about this as
VL does fluctuate - and on the day of the labs, I wasn't really feeling that well - I felt "virusy", if that is a word. It had done that in the past back in December 2009 but went back down to 11,300 in the next test. 36,902 is still very low.
She also ran an AFP test at the request of my Gastro - and it was 5.2, about the same as last time.
I will get back full labs soon and will post those as well. I'm pretty happy with these results considering that I have been out of most supplements for months - just taking Milk Thistle, D3, Lysine and 3 mg. LDN.
Tuesday, September 13, 2011
Thursday, March 10, 2011
March 2011 Hepatitis C Treated with Low Dose Naltrexone (LDN) - Dr. Zagon comments
Hepatitis C Viral load - 16,500 slightly up from the 14,679 that it was in October 2010.
ALT - 30 up from 24 in October (6-40)
AST - 33 up from 31 in October (10-35)
Basically the same as it has been for the last few lab tests! Normal liver function tests and lower viral load using 3 mg. of Low Dose Naltrexone.
My platelets also went up as did my red blood cell count. However, my IgA was back on the low side again - last labs, it was normal for the first time.
Ferritin was 43, which is down a bit from last. Iron was also down as was total saturation.
I also saw my gastro recently and was pleasantly surprised with his attitude and manner. I had not seen him since 2009 shortly after starting LDN and he had yelled at me for taking it.
I had a new abdominal ultrasound done last week and got back the results. The U/S report used the word unremarkable to describe most things - however, it showed "diffuse fatty infiltration of the liver" DRAT! My last u/s was done about 3-4 months following my appointment with Dr. Berkson in 2009 and my five IV ALA (alpha-lipoic-acid) treatments and it had "normal liver function" with no mention of fattly liver! Every other u/s that I have had since 2001 has had fatty something, but not the one after Dr. Berkson. I do know that Dr. Berkson recommended a course of initial IV ALA treatments, then oral supplementation and then another round of IV ALA. I have never had any more treatments since 2009.
So, maybe that is proof of the power of IV ALA - or as the gastro and I discussed, maybe interpreting ultrasounds is up to whoever reads it. But I would tend to think that the IV ALA did it - back in 2009 during the same time, my AFP (alpha feta protein) test went up to 6.1 (which was slightly above normal) - it had always been normal before. I remember reading at the time that liver regeneration can sometimes cause elevations in AFP. My doctor today told me that I was correct - "You have been reading". My AFP was normal for every test since then.
Fortunately for me, my own CAM doc here does ALA, so I will want to have a few. It'll probably be awhile though as I don't have the money for it now.
Anyway, it was a pleasant gastro visit - probably the only one that I've had since I was diagnosed in 2002.
NOTE! 2013 UPDATE ON DOSING - PLEASE READ POST:
Back to original post:
For my current labs, I was taking the 3 mg. LDN every other night. In the past, I had tried increasing the dosage and taking it almost every night. Some folks in our Hepatitis Cam group had initial drops in their viral load and liver enzymes on 3 mg. but their levels seemed to go back up down the line. When they increased their LDN dosage, their levels went back down. I wrote to Dr. Zagon about this and this is what he said:
"You are a product of not understanding how LDN works - a classic example I might add. And most of your colleagues on the web share your misinformation.
LDN works through what is called the opioid growth factor - a native peptide (and its receptor) in your body. LDN is a decoy that fills in at the site of the receptor - the body not having the peptide makes more of it in compensation. Now the trick we discovered 30 years ago. A short time of naltrexone - low dose naltrexone is the term lay people use (but really intermittent opioid receptor blockade) increases the peptide. After the naltrexone is metabolized - optimal time is 4-6 hours for around 3 mg, the high levels of peptide and actually an increase in receptors as well can interact. This depresses cell/viral proliferation - and makes you better.
By increasing your dose of LDN you are cutting into the time you need for an optimal reaction. Hence - you feel problems.
My advice - take 3 mg/day. If you have a problem, start taking LDN once every 2 days (many folks are taking it that way - and
some every 3 days).
Dr. Zagon
A story. A lady calls me and says she has breast cancer. She is taking LDN and the cancer is growing more rapidly. I ask her how LDN is being given - she says that since LDN is so good, she is taking it several times a day. Now you know why she had a faster growing cancer - she was not allowing the opioid-receptor interaction to occur because of so much naltrexone.
And, if you block the receptors all day with naltrexone (high dose of naltrexone), we now see that wound healing is accelerated. Why, because the cells are speeding up in replication and healing the wound faster.
Below is what I wrote to Dr. Zagon:
I have been on 3 mg. LDN for over a year for my HCV with terrific results - viral load dropped from 1,400,000 to 11,200 on my April 2010 labs and lft's are normal. I was on 3 mg. every other night,then every night. I recently increased my dosage in an attempt to lower my viral load even more - went up to 3.5 and then to 4 mg. taking it every night. However, I have had small outbreaks of shingles and HHV2 on the 4 mg. dosage. I did not take the LDN for a couple of nights and started again last night at 3.5. I am going togo back to every other night dosing for now.
So after Dr. Zagon's first response, I wrote back to him and explained about our Hepatitis Cam group's database and how most folks lft's and viral load went down when they increased their LDN dosage. This was his reply:
First, science is science. If these individuals are having to go up on dosage to evoke a positive response, that is potentially meaningful. My interpretation is that these patients are exhibiting a tolerance that builds to LDN. Very interesting. Our initial recommendation was 3-10 mg of LDN daily.
Second, your story does not conform to what others may be
seeing - tolerance. If anything, you are encountering a sensitivity. I would certainly try 3 mg every other day and see what happens.
Third, this entire LDN business is empirical right now -
you have to be in the frontier of just plain trying things out. In
your case, lower is the best. It may be that in some individuals
their pharmacology is far different than yours - they might be
building a tolerance and need more. Alternatively, the LDN is either breaking down over time and loses potentcy, or is not or high quality or is being mixed in with "fillers" that are negating the action of the LDN.
That correspondence took place over last summer (2010) - now, I ponder why my viral load seems to be staying the same (though slowly creeping higher) and not getting any lower, or thankfully, not skyrocketing back up to where it was pre-LDN - which was over 1 million. What can I do to get it even lower? So, despite what Dr. Zagon says, I am going to start taking the LDN every night and perhaps slightly increasing the dosage in an attempt to lower my viral load even more. He has added a bit of confusion into the mix, I must say. Or look into TLR's (Toll Like Receptors) - there has been a lot of research of late about them, particularly in HCV. Dosing of LDN 2 x a day is also another possibility - I will update after more research.
ALT - 30 up from 24 in October (6-40)
AST - 33 up from 31 in October (10-35)
Basically the same as it has been for the last few lab tests! Normal liver function tests and lower viral load using 3 mg. of Low Dose Naltrexone.
My platelets also went up as did my red blood cell count. However, my IgA was back on the low side again - last labs, it was normal for the first time.
Ferritin was 43, which is down a bit from last. Iron was also down as was total saturation.
I also saw my gastro recently and was pleasantly surprised with his attitude and manner. I had not seen him since 2009 shortly after starting LDN and he had yelled at me for taking it.
I had a new abdominal ultrasound done last week and got back the results. The U/S report used the word unremarkable to describe most things - however, it showed "diffuse fatty infiltration of the liver" DRAT! My last u/s was done about 3-4 months following my appointment with Dr. Berkson in 2009 and my five IV ALA (alpha-lipoic-acid) treatments and it had "normal liver function" with no mention of fattly liver! Every other u/s that I have had since 2001 has had fatty something, but not the one after Dr. Berkson. I do know that Dr. Berkson recommended a course of initial IV ALA treatments, then oral supplementation and then another round of IV ALA. I have never had any more treatments since 2009.
So, maybe that is proof of the power of IV ALA - or as the gastro and I discussed, maybe interpreting ultrasounds is up to whoever reads it. But I would tend to think that the IV ALA did it - back in 2009 during the same time, my AFP (alpha feta protein) test went up to 6.1 (which was slightly above normal) - it had always been normal before. I remember reading at the time that liver regeneration can sometimes cause elevations in AFP. My doctor today told me that I was correct - "You have been reading". My AFP was normal for every test since then.
Fortunately for me, my own CAM doc here does ALA, so I will want to have a few. It'll probably be awhile though as I don't have the money for it now.
Anyway, it was a pleasant gastro visit - probably the only one that I've had since I was diagnosed in 2002.
NOTE! 2013 UPDATE ON DOSING - PLEASE READ POST:
Why 3mg. LDN might be best?
Back to original post:
Dr. Zagon's comments on LDN dosing
For my current labs, I was taking the 3 mg. LDN every other night. In the past, I had tried increasing the dosage and taking it almost every night. Some folks in our Hepatitis Cam group had initial drops in their viral load and liver enzymes on 3 mg. but their levels seemed to go back up down the line. When they increased their LDN dosage, their levels went back down. I wrote to Dr. Zagon about this and this is what he said:
"You are a product of not understanding how LDN works - a classic example I might add. And most of your colleagues on the web share your misinformation.
LDN works through what is called the opioid growth factor - a native peptide (and its receptor) in your body. LDN is a decoy that fills in at the site of the receptor - the body not having the peptide makes more of it in compensation. Now the trick we discovered 30 years ago. A short time of naltrexone - low dose naltrexone is the term lay people use (but really intermittent opioid receptor blockade) increases the peptide. After the naltrexone is metabolized - optimal time is 4-6 hours for around 3 mg, the high levels of peptide and actually an increase in receptors as well can interact. This depresses cell/viral proliferation - and makes you better.
By increasing your dose of LDN you are cutting into the time you need for an optimal reaction. Hence - you feel problems.
My advice - take 3 mg/day. If you have a problem, start taking LDN once every 2 days (many folks are taking it that way - and
some every 3 days).
Dr. Zagon
A story. A lady calls me and says she has breast cancer. She is taking LDN and the cancer is growing more rapidly. I ask her how LDN is being given - she says that since LDN is so good, she is taking it several times a day. Now you know why she had a faster growing cancer - she was not allowing the opioid-receptor interaction to occur because of so much naltrexone.
And, if you block the receptors all day with naltrexone (high dose of naltrexone), we now see that wound healing is accelerated. Why, because the cells are speeding up in replication and healing the wound faster.
Below is what I wrote to Dr. Zagon:
I have been on 3 mg. LDN for over a year for my HCV with terrific results - viral load dropped from 1,400,000 to 11,200 on my April 2010 labs and lft's are normal. I was on 3 mg. every other night,then every night. I recently increased my dosage in an attempt to lower my viral load even more - went up to 3.5 and then to 4 mg. taking it every night. However, I have had small outbreaks of shingles and HHV2 on the 4 mg. dosage. I did not take the LDN for a couple of nights and started again last night at 3.5. I am going togo back to every other night dosing for now.
So after Dr. Zagon's first response, I wrote back to him and explained about our Hepatitis Cam group's database and how most folks lft's and viral load went down when they increased their LDN dosage. This was his reply:
First, science is science. If these individuals are having to go up on dosage to evoke a positive response, that is potentially meaningful. My interpretation is that these patients are exhibiting a tolerance that builds to LDN. Very interesting. Our initial recommendation was 3-10 mg of LDN daily.
Second, your story does not conform to what others may be
seeing - tolerance. If anything, you are encountering a sensitivity. I would certainly try 3 mg every other day and see what happens.
Third, this entire LDN business is empirical right now -
you have to be in the frontier of just plain trying things out. In
your case, lower is the best. It may be that in some individuals
their pharmacology is far different than yours - they might be
building a tolerance and need more. Alternatively, the LDN is either breaking down over time and loses potentcy, or is not or high quality or is being mixed in with "fillers" that are negating the action of the LDN.
That correspondence took place over last summer (2010) - now, I ponder why my viral load seems to be staying the same (though slowly creeping higher) and not getting any lower, or thankfully, not skyrocketing back up to where it was pre-LDN - which was over 1 million. What can I do to get it even lower? So, despite what Dr. Zagon says, I am going to start taking the LDN every night and perhaps slightly increasing the dosage in an attempt to lower my viral load even more. He has added a bit of confusion into the mix, I must say. Or look into TLR's (Toll Like Receptors) - there has been a lot of research of late about them, particularly in HCV. Dosing of LDN 2 x a day is also another possibility - I will update after more research.
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