mhudnall and Dr Berkson

[Upbeat]

I have waiting to see furter posts on your treatment with Dr Berkson.  How has it been going?  His work with Alpha Lipoic Acid and I believe LDN peeked my interest.   You were giving updated reports on your viral load and alt ast numbers.  Its been awhile and just curious as to where you stand now.

[mhudnall]

Well, the fact that the fibrosure test is not very accurate is well known. Here is what the disclaimer reads on the actual report:

"The positive predictive value of a Fibrotest score...(F2, 3, 4) was 61% in that same patient cohort." The cohort describes the study group. So, basically they are saying that for any stage over F1 it is predictive of fibrosis staging to a 61% accuracy.

So what I take from the test is that fibrosis stage is unclear, but it does indicate a clear-cut problem with Alpha-2 macroglobulins. I am glad for that information because that gives me another very relevant marker with which to measure my progress.

As for LDN, and my program as a whole, it does work to my expectations. Three years ago, my viral load was over seven million and it was very high, possible over that, for two years. Now, thanks to LDN and my program as a whole, it is currently at 300 thousand. I'm very pleased about that.

The other aspect about LDN is that it seems to help with my autoimmune conditions. The reason I had to quit treatment, and that I now cannot retreat is extreme dermatological reactions that seem to me to have an autoimmune/allergic component. I also suspect that my hypothyroidism might have an autoimmune origin. LDN helps keep those symptoms in check. When I went on a trip about a month ago, I forgot to bring my LDN. Two days without it and the knuckle on my right pointer finger swelled up, callused and slit. That was an INF tx side effect. LDN brought it under control immediately. Those conditions almost certainly were caused by INF tx, and it is an exacerbating problem that I have to deal with as I address my hep c problems.

What I also see is that I am pretty reactive to bad diet. When I am fastidious I have no symptoms. But as my diet declined over the last year, my AST/ALT crept up and my rashes increased. Now I have a rash on my left elbow and my right knee.

Maybe a food allergy triggers the autoimmune stuff. Gluten, dairy, wheat? I don't know, but when I cut those things out, my problems seem to go away. Just LDN and oral supplements do not, however. That is now clear as well.

I sort of let my diet drift, not on purpose, but with an intent to watch it closely and see the results. I wanted to see if just LDN and oral supplements would let me coast. The lessons I have learned is that is probably not going to happen with just LDN and oral supplements. So, rather than give up on supplements and LDN, I see the opposite. I think it's time to go for another push, increase my efforts, clean up my diet and see what happens.

I will know pretty quickly. I'm juicing greens daily, cutting out bad food, will be starting IVs again, and will re-test again in a month or so. So, I consider this a baseline, and I will measure the effectiveness of my efforts soon.

I'll let you know the results in another month.

Mike H

[copyman]

as you already know the fibrosure is not that accurate for the middle stages. You could be stage 2 or maybe 4 with your results. Same with the Fibroscan, it is not that accurate for the middle stages so with the same result then you still will not really know. Falling into the middle stages is really tricky when trying to get a firm diagnostic on the stage. In this case a biopsy might be the only way to get the best idea of stage.

Does this mean the LDN & your other supplements did not work to your expections? Are you reconsidering what you have posted here on the benefits of LDN?

Best of luck

[mhudnall]

Yeah, I hope that HR does contact me. The combination of Fibrotest plus Fibroscan increases positive predictive value up to 95% if I remember correctly. 61% for the fibrosure is just is a little too ambiguous for me to place a lot of faith in.

But, as I said, that is for fibrosis staging. Alpha-2 macroglobulins are something I will be testing for regularly now that I know they are high. So that part of the test is valuable - another relevant LFT test. The fact that those readings are out of whack is good info; also good motivation. I will be watching that number regularly now, and be trying to move it with my strategies. Fibrosure test - not so much.

I should have more labs after next week. If I get any movement, I will report back.

I am now at war with alpha-2 macroglobulins.

Mike H

[Willy50]

Thanks for posting the info.  I'm glad you got the test and I think it could be useful to maintain the practice maybe once per year.  Keep in mind that many of these tests are to be done fasting beforehand.  A big greasy sugar laden breakfast beforehand.will skew your scores.  I was silly enough to do one following a 5K race; same deal.  The enzymes can rise following the destruction of cells, such as heart attack or extreme exercise can cause.

I think that since you are not getting a biopsy an additional test....a fibroscan... might be a great addition to your assessment.  HR is also likely to also shed some light on the meanings of your fibroscan scores.

HR is also a person who would be a very trusted source of information on a variety of alternatives.  IMHO many doctors simply are not "up" on supplements, vitamins, and other complimentary /alternative treatment options.  I presume that he may be able to also look at your treatment and give some feedback.

RE: what does the fibrosure score mean?  Once you have a fibroscan I think you'll have a better more rounded picture of what it means.  Keep in mind that if you did not fast your results could have actually been better.  Part of my message is that ALT/AST can rise and fall daily.  The actual effects on the liver, the fibrosis and cirrhosis or fatty liver tend to remain far more constant on a day to day basis.  As imperfect as a fibroscan may be it should still provide that more static appraisal of your liver.  I believe that part of the issue with fibroscans could be operator skill.  I believe that HR is way beyond tech skill level and might also produce a more accurate reading than a basic tech might produce.  I'd like to hear feedback on that; how much the operator themselves can affect the ultimate scoring.

Thanks for the feedback.  I have mentioned before......without a past baseline test or linking the results to a biopsy one does not know if the fibroscan test score means you are getting worse or whether you have improved.  Some form of continuity of testing may in time provide that.  

I think that HR is very interested in the subject of reducing fibrosis.  I assume that means that he is also keen on the methods of testing for and substances/treatments which may reduce fibrosis.  I'm sure that if you get a scan from him you could also get a lot other info in the bargain.

best,
Willy

[mhudnall]

Typo Mistake:

negative predictive values factor in true negatives and false negatives.

Mike H

[mhudnall]

A while ago, mikesimon suggested that I check my fibrosis levels with some of the non-invasive fibrosis tests, since I decline to have a biopsy done. The readily available ones are the fibrosure/fibrotest blood tests, and, to a much lesser degree of availability, a fibroscan. I agreed. HR also owns a fibroscan machine in his clinic. Bajawoman kindly contacted him on my behalf, and he said that he would contact me by email to set up an appointment. However, it's been two weeks and I haven't heard from him. So I did a fibrosure test. It is an algorithm of six blood tests:

Alpha-2 Macroglobulins
Haptoglobin
Apolipoprotein A-1
Bilirubin Total
GGT
ALT

I got the results yesterday. The fibrosure results say F3.

That is higher than I thought it would be, but considering I had an F3 score by biopsy four and a half years ago, the results are no too alarming. A lot of very bad stuff happened since then.

The problem with this test is that it may not be too accurate. It has a positive predictive value of 61%. Positive predictive value factors in true positives (verified by biopsy) and false positives to determine the possibility that the person has significant fibrosis. The negative predictive value, which factors in false positives and false negatives is higher, at 85%. In other words, it is better at predicting the absence of significant fibrosis (85%) than the presence of significant fibrosis (61%).

The other thing that raises my suspicions is that my scores are very good except two area, ALT and alpha-2 macroglobulins. If all my scores were moderately poor across the board, I would be more alarmed. But four are excellent and two are markedly bad. And one of those is ALT, which I know moves a lot in my history, depending on how active I am with my program.

I knew that my ALTs have been creeping up, but that is a fairly recent development. I believe I know how to lower those. In fact by improving my diet and juicing greens for nine days before this sample, my ALT went from 154 to 118. I am adding alpha lipoic acid IVs, which I haven't done for many months, to get it even lower. If I had gone into this test with a 154 ALT it probably would have given a higher reading. Does that mean my fibrosis score has moved? I don't think so. Neither will it have moved when I get my ALT down much lower. I'm just not really sold on the accuracy of this test.

The real value of the test for me, however, is that my alpha-2 macroglobulins are very high. 410 with a ref range of 110-276. Well, who would have thought? That's something that you don't really test for regularly. I always looked at VL, AST/ALT and fibrosis scores, however rare. But these fibrosure tests have shown me that there are other relevant markers to monitor.

So what the hell are alpha-2 macroglobulins? Well, it turns out they are very large proteins that contain a region that "baits" your body's natural proteinases (enzymes that cleave proteins in specific regions). So they "trap" your proteinase enzymes.

Wickipedia: Alpha-2-macroglobulin is able to inactivate an enormous variety of proteinases (including serine-, cysteine-, aspartic- and metalloproteinases). It has in its structure a 35 aminoacid "bait" region. Proteinases binding and cleaving the bait region become bound to α2M. The proteinase-α2M complex is recognised by macrophage receptors and cleared from the system. It functions as an inhibitor of coagulation by inhibiting thrombin.[2] It functions as an inhibitor of fibrinolysis by inhibiting plasmin and kallikrein.

In other words, they take out your macrophages, inhibit blood clotting, and inhibit fibrinolytic activity!

Not good!

So, I am not so worried about the fibrosis score of the fibrosure test - I think the more supplemental strategies you employ, the farther you are away from the norm of the study group they used to analyze effectiveness of the test.

But the macroglobulin thing is coming out of left field. So I am going to my doctor for five days next week ( I was going anyway), and we'll see if we can move that number. Luckily that is not a real expensive test anyway - the whole fibrosure test was $320, so one component should be cheaper (but you never know). It will be interesting to start monitoring that for movement.

This late spring and summer I pretty much lived an average lifestyle - lots of protein, including family barbeques, meat, no juice and no IVs. Just LDN and supplements. That's why I think my AST/ALT scores have steadily creeped up. So I'll work to get them down. Luckily those are inexpensive tests to monitor. I will also see how jumping hard back into my program moves the macroglobulins.

The lesson I have learned from this is that for me, living with the disease, its going to take a lot of effort for the rest of my life. Okay diet is not acceptable. Coasting is not going to cut it. Its going to take extraordinary discipline to stay in front of this thing. But I was in a very bad place just two to four years ago after failed treatment - immunosuppressed, very high viral loads, high inflammation, very poor health and pretty much in a free fall, so after climbing back over the edge of that cliff, now there's just a mountain to climb.

Time to go!

Mike H

Mike H