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Avatar universal

For those who CAN'T go the traditional treatment route

I only recommend this article for those who CAN'T treat with traditional treatment,so don't shoot the messenger. It's just an FYI  that I came across. I don't know how reputable this Dr is. I of course believe in traditional treatment 100% but it doesn't work for all  & some can't take the side effects...and THEN alternatives ONLY as the last chance or option for hope... It's the Alpha Lipoic Regimen.    Here is the link below.

http://www.huffingtonpost.com/dr-mercola/antioxidants-benefits_b_509655.html
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179856 tn?1333547362
, I have a load of 4657470 iu/ml of delightful 1a, with ALA, LDa?, or coq10 or what ever, before INF/RIBO tx does it make the chances of clearing higher?"

Actually getting your viral load 'down' means nothing and in fact sometimes folks with a low viral load have a harder time clearing.  Consider that a low VL is under 800,000 - you'd REALLY have a whole lot of dropping to do which would be more likely to happen from interferon than any so called supplement.

If things were so easy, ask yourself, wouldn't everyone do it?  Let the buyer beware.

If you have had a biopsy and are a low level of liver damage and are living a liver healthy lifestyle and CAN wait - you can wait to see if the new trial meds are available in the next year.  If however you have a medium high level of liver damage and really 'can't' wait then you should speak to a heptologist and ask him if starting inteferon/riba is a good move for you.  You just can't ignore this disease remember that.....it doesn't care if you do or not most likely your liver damage will progress until the virus is dead and gone.

However, take your time and make the right decision for you.  You don't have to decide today what you are going to do.

By the way we ALL felt overwhelmed when we first found out and went into a pretty much blind panic. But you don't have to...slowly digest and make the decision that is right for you.

Good luck.
Helpful - 0
1225178 tn?1318980604
Have you had your biopsy yet? Once you know how much damage there is, you will be in a better spot to decide about waiting on tx.
From what I've read, viral load doesn't have much to do with determining how well you'll respond.
I also felt like I had mental overload when I first got on here in Feb. Just take a few days off and give your brain time to absorb what you have read. You have time. The slow progression of hep c is really a blessing in disguise because it gives you time to think things through.

Good luck with whatever you decide to do.
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1258248 tn?1328775478
Wow, reading all this and all the other stuff available is mind boggling. as stated way earlier in this thread I am new to HCV and all. A question has occured to me, if a person can get the viral load down, I have a load of 4657470 iu/ml of delightful 1a, with ALA, LDa?, or coq10 or what ever, before INF/RIBO tx does it make the chances of clearing higher? As a nieve HCV patiant, ( I belive this means I havent had any treatments) should I move along into tx or is there some other developments coming that I might not be eligable for if I start now. If I could hold out till september I could take the winter off work and focus on just this. I have read about a new one tx being tested but forget what it was called. as experianced HCV people (is there a term for this) is there always a new treatment just around the corner? Have read so much in such a short amount of time. not looking for someone to make up my mind for me, just trying to understand and get informed.
zed
p.s. I have been tracking my eating and it is supprising what effects my itchyness. sure wish I didnt have that snickers bar and that baggle later on...
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233616 tn?1312787196
a few things besides tumors can make it go up...also that test is only 80% accurate...meaning 20% are false positive...which is why they ran several on you...the others being negative means you are ok in all liklihood...I've read that stress and even abdominal palpataion can increase blood levels of the cga markers...so I won't be too concerned there.

as I said in another post, I would be a little concerned about motives with Berkson due to his statement that there is no cure for HCV...by getting you to beleive that, and believe you may have elevated tumor markers...he insures a new patient...
but he is incorrect in saying there is no cure...and IV amounts of ALA are neither safe nor needful IMHO. You can raise your HDL naturally with diet and supplements, and you can be cured of HCV with SOC, and more likely so when the new PI's get here.

mb
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979080 tn?1323433639
I have my hepatologist on board and they will let me predose Riba.

Problem is they can not guarantee that this might not exclude me from future trials ?!

so what about that one ?

Very interesting what you said about endocrine system.

Dr. Berkson had me test Chromogranin A (among other things) and it came back

borderline normal high in Dec09. So I retested it in Jan10 and sure enough it

is now elevated. So I told my GP and he said it is an edocrine problem.

Since chromogranin A is elevated with carcinoid tumor I tested all the other stuff

serotonin, 5 HIAA 24hr urine, pancreatic peptide, gastrin all negative. Went to see

oncologist and I have zero carcinoid symptoms. He said 99.9% I do not have it.

Can Hep C cause chromogranin A to go up ? It is one of the reasons why I have

not started tx yet because nobody seems to have an answer.
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233616 tn?1312787196
I also had a bad episode of eczema in the 70's. I wonder now if it was related to my hcv.

there were grapefruit sized oozing lesions on my thighs and hips. The itching deprived me off all sleep and left me suicidal over time.

I went to the local university hospital, was seen by 12 doctors including the head of dermatology. They refused to do any test to see if I had a disease or deficiency.

I suspected a deficiency, having chosen to be vegetarian, itself the cause of many diseases. (not that meat eaters don't also get sick, but veggies alone does create many issue).

I read extensively, put forth my theories and was poo=pooed

they admitted it was one of the most severe cases they'd ever seen and offered one solution, steroids.
so read up on steroids...and told them I did not want to destroy my liver to save my skin.

after much more research I came up with 2 minerals I believed might be the key and began to take them...I also added Solomon's seal, golden seal poultaces to my skin....messy but they worked.

within 5 days not only was the insane itching gone, but the oozing stopped, the scabs and crust fell off...within 10 days I had perfect fresh skin, like  a babies bottom....and I never got it back again, ever.

unfortunately I don't know what worked, the minerals or the herb poltace, all I know was I was healed, and something caused my body to be able to heal, somethng that didn't destroy my liver in the process.

the doctors of course were baffled, they thought I was nuts to refuse their steroids, but even at 20 years old I was a health nut....of course, they sang a different tune when I showed them what my treatment had achieved...but I doubt that they applied this to any of their patients.

when the immune system get's low the body doesn't produce the right amount of endocrine stuff, steroids are amongst them, just as your thyroid was effected, your adrenals may also have been compromised.

actually, I taught anatomy, and also ended up with full endrocrine dysfunction (everywhere) so I know a little about all this...

If you think about retreating, I'd get a I on board, and also get a hepatologist willing to run the riba blood work.
The upside to higher riba levels is that those who had the highest levels also SVR'd at the highest rates in the swedish study...however, they also had the most blood and skin issues, and also a much higher rate of kidney failure so it's very important IMHO for patients to get the right dose, not an over or an undersdose.

I am very concerned that more attention isn't paid to this part of the equation, especially since seeing that many small people, male or female, have the worst sides...which means that weight based isn't perfect....tiny people are getting more drug per kilogram of weight than larger people if my theory is correct, and this explains the increase in thinner people having more side effects.
I'm not sure they factored in the fact that bone and fat need to be set aside in the weight based equation...if it were based on lean muscle and organ weight, then a better formulea might be arrived at, but I've never explored how they arrived at the current SOC...this is just my theory of course, never read up on it...
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Avatar universal
Many experience chronic fatigue and do not have hemolytic anemia such as myself.  When fatigue is constant (hence chronic) and you are told it is a common manifestation from interferon by one of the leading hepatologists in the country I tend to believe that is the case.
Those with hemolytic anemia will experience fatigue and if Procrit is necessary the fatigue will lessen to a degree.  Chronic interferon fatigue does not go away until the cessation of interferon.
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148588 tn?1465778809
Interesting, in that I started taking CoQ10 during the early 90's for unrelated reasons - my 2001 bx came back as 'mild fibrosis' and during tx my gastro was always asking me if I was taking all my meds, based on my near nomal CBCs.
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233616 tn?1312787196
harveywallbanger...now there's a word I haven't heard in a while how true, how true.

let me explain why I felt the lipid issue is important a little more.

when I started out treatment my total cholesterol was 150....it fell to 110 during tx.

I suspect this was due to liver function, as well as me paying close attention to lipids in an attempt to not provide my virons with more shell protection. I still ate fat mind you, but very judiciously.

Nevertheless, when my Chol. fell that low I developed the shakes really bad as well as depression and they put me on both ativan and remeron...(already was on ambien for no sleep)....then I discovered the cholesterol/brain connection, due to a forum member...and so had to choose...do I restore the fat now, and maybe help the virus or wait.
I waited.
Now that I'm done with tx it made sense to restore cholesterol because it protects the brain, liver and more...it's not fat that is the enemy as much as the wrong types of fats.
Plus I felt getting off the meds and resoring normal brain function would be better for my liver. To try to avert withdrawals I went slowly on this process...weaning over several months...
Yet I still developed tremors...I wake up with them every morning. Uncontrolable shaking, primarily right side, which means it's likely a left brain issue.

I have since then tried requip, a dopamine antagonist...but to no avail..it helps but gives all day headaches so nixed that. Currently I am eating a can of sardines a day to go with my Coq10, and ALA, and this has reversed my lipid profile and also added 40 pts to my total...back to 150 now....no more depression to speak of...so cholesterol does effect this...it protects the brain from overfiring etc...

also trigylecides are lower than ever, and BSugars are nromal...no more IR...yeah!!

this is another part of the equation that liver people should be paying attention to since metabolism is so effected by the virus, unless things are done to supplement the glands that are failing AND to help the cells return to proper nutrition via supplements its a downward spiral.

My Homa score has gone from a 7 (very high) back down to a 3....pretty good for starter....and I can still get it lower....I just have to work a little harder at eating smaller meals more often, also good for the liver...but hard for me.

Nevertheless, getting off of diebetes drugs, and all those "calmers" none of which were liver friendly was a good thing...but I don't think my mind would be in good shape if I wasn't also being proactive with what can restore normal brain functions and help reset my metabolic rates.

I also reduced my ammonia, a ten fold reduction, and I did it without the use of lactulose....reason being is lactulose contains chlorine isotopes not good for liver...oxidation issues...so I did it NATURALLY with additional fibers (and good lipids)
and protein reductions.....ammonia is now 22 not 130 like before....
I'm not saying some should not use lactulose, certainly in high ammonia or ESLD it is essential, but for me, it was worth trying the natural route first because the chlorine can contribute to HCC to which 3-5% of hcv people succoumb each year...and I didn't want that.

all in all, I'd say we are all making progress.

Mike:

you haven't eaten a normal american diet. The addition of sugars and white flour are the primary culprits in intestinal degradation. White flour coat the villi eventually killing off much of it...think glue,  white flour is wall paper paste, it does the same in our intestines, coats and forms glue...eventually the delicate villi are destroyed....also sugars increase the wrong bacteria and the two produce a alimentary tract that limps along, which is why you probaby absorbed better than the average bear...you don't eat that way....your intestines are cleaner and so ergo more riba absorbed...just a guess. OF course, you could also have gotten into an eczema issue from a mineral imbalance...it does happen.
the other maybe is the mitochondria issue, and I concur that a little prevention here makes sense...particularly the coq10, branched chain amino acids as well can be reparative here.
what I noticed was that my skin turned instantly dry...as riba kicked in it got dryer and the fat redistributed as is common in retroviruses...but the damage to the skin can be really severe...so exploring how to help the mitochondria repair makes sense...(hgh)....unfortunately the cells all take the onslaught, not just the virons but all our RNA gets damaged...I do not understand why there is no effort within medicine to address this...true there is no percentage I guess, but until they can only target cancer or viron cells, you would think they'd try to address reparative things...but HGH is so expensive I'm certain this will always be something doctors do for themselves, and patients will have to fight to get.
Nevertheless the supplements known to help should be employed...rats fed mitochondrial reparative supplements lived 3 times longer in several studies...THREE TIMES LONGER...that should be a clue to longevity....not sure why this isn't getting more notice...it also points to the need HCV treaters have to explore this since the tx drugs are known to damage our mitochondria...just makes sense to me.

mb
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Avatar universal
Fatigue on treatment is often a result of reduced oxygen levels due to the hemolytic anemia caused by the ribavirin that produce those low hgb levels.  I don't hear too many people claiming that INF is the cause for their chronic fatigue.  Their weekend fatigue and flu symptoms perhaps, which is why they tend to do the interferon on the Friday.  INF instigates a variety of side effects.  However, the ongoing fatigue is generally associated with the ribavirin-induced anemia.
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Avatar universal
I take your word on the thyroid issues being caused by the INF. That was not as severe as the other issues. But ribavarin is well known to cause mitochondrial damage which cause fatigue.

"When medications cause damage to the mitochondria, it is known as mitochondrial toxicity. Used for standard HCV combination therapy, ribavirin is known to be toxic to mitochondria. Ribavirin is a nucleoside analog drug, a class of medications particularly likely to cause mitochondrial damage."

http://www.hepatitis-central.com/mt/archives/2009/01/hepatitis_c_fat.html

However, that is not to dispute your observation that INF causes fatigue as well. The combined effect of both might be the reason that chronic fatigue is so common and persistent after tx.
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Avatar universal
"Evidence is that after only 12 weeks I was heavily into extreme chronic fatigue - the result of riba-induced mitochondrial damage."

I experienced extreme chronic fatigue after 12 wks of treatment also and this was a result of the interferon.  Exact diagnosis "chronic interferon fatigue".  I was given Provogil but did not like the side effects and discontinued use.
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Avatar universal
"I also suspect riba of being the culprit of the autoimmune, thyroid and endocrine problems. "

I also had thyroid issues while on treatment and they remain permanently. My endocrinologist was very familiar with INF and Ribavirin and it was his opinion that it was the interferon that triggered the autoimmune thyroid issues.  I have read a number of other corroborating opinions on that.

Trish
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233616 tn?1312787196
Mike,
yes, and I understand you trying to stick it out, but not your doctors ignorance.

fact, the average adult only absorbs 5% of their foods and drugs.

fact the average baby absorbs 15%, so a 3 fold increase.

fact, the differences may therefore be that extreme because Riba absorbs through the intestines and individuals can vary greatly in absoption rates.

fact some drugs absorb thru the stomach, here the differences aren't as extreme,but

fact, you've been on a very healthy diet for a long time, so you could have been absorbing at 10% instead of the normal 5. In which case your riba could have been twice the average......ouch!

fact, in this country they don't even bother to check blood levels of riba, a mistake in my opinion, many folks might be dialed back if their levels got too high, and be saved from sides and or tx cessations resulting in relaspes, other might need higher doses...instead of weight based, it should be blood level based, but that would cost MONEY to add an extra blood test so don't hold your breath.

fact, your GI should have known, should have suspected an overdose or autommmune reaction, either of which could have had remedy. If you ever do retreat get a different doc.  Besides this, docs who don't connect infections with the treatment are really clueless, any time something whacks out your immune system, which chemo does do, infections and reactions can and do follow.

Bali....

hcv itself takes down the endocrine system. then we add INF, which also has the side effects of placing the immune system into hyperdrive and canceling out insulin, which can lead to more insulin production, which in turn can lead to more Insulin resistance, type 2, or auto immune diebetes...
type 1.....this is why there is a warning on INF that it can cause diebetes.
Diebetes is just ONE of several things that can happen, the endocrine system is changed by the virus, the virus itself influences changes in cell metabolism, which help it to survive and procreate...chief among these is the fact that the immune system has to go into hperdrive for years trying to eliminate a virus...this natural state of heightened interferon levels leads to changes in cell structure, lipid coatings, ion channels, lots of fancy words for complex cellular profiles...and these changes put stress on the entire endocrine system..then we add more iNF to the mix....which can eliminate the virus, but also tends to stress out already worn out glands.
this is why there are warnings that treatment can cause autoimmune diseases, including autoimmune hepatitis...whenever you stimulate the immune system you can kill invaders like this virus, but you can also have your system stop recognizing what to atteck or not attack, and it can turn on itself....most often, the thyroid is compromised, but other things can as well...this is rare, but it does happen and one must be watchful. This is why people with RA or some other immune thing already are considered at high risk, and don't often treat successfully.
this is why many patients begin having thyroid, blood sugar, all kinds of endocrine issues who may not have had issues before tx. Although recent studies show lower levels of all endocrine secretions in the chronically infected that are far above what are ever seen in the general populace... even before any treatments.
That does not mean don't treat, but it does mean having an endocrinologist keep an eye on your entire system would be wisdom.

as far as predosing, the main issue with this, well with alinia, none unless you have an intestinal disease, none with INF, nobody predoses it, , but with riba, which is the common predosing item, it's not an issue except in one sense, you have to be sure your doc knows, and is ok with it...why, because your platelets and HGB will fall sooner, and you may need blood builders like procrit sooner as a result...BUT the good part is that recent studies show a greater impact...more successes.

the lead-in branches of the bocevir studies, for instance, showed the greatest SVR percentiles in the groups that had a lead in before they hit folks with the PI...WHY?

Because the riba portion of the tx SOC takes weeks to build up in the blood, so when you hit both hard at the same moment, you don;t get the benefit fully, you don't get the one two punch so to speak...because the one drug is in low levels, hence, it takes more time to get UND, leaves more time for the virons to adapt and become resistant......whereas if you let the slowly absorbing drug build up first, then hit it with the INF, and  a PI if you are lucky enough to get one...well these groups get UND quicker, and SVR more often, SVR more often means the virons had less chance to adapt, didn't form a wild strain as often...so there's good reason to consider predosing IMHO.
Right now they are working on several drugs in trials that do nothing but alter the ion channels, hydrophobic pairs, etc, in attempts to get the riba to both absorb and penetrate cell structure better...
by predosing you are doing the one thing known that may help this happen.

You also need full digestion going on to help riba absorb, so bile production is key to this....ergo eating a little fat and/or protein in your meal when you take the riba will help you absorb it, whereas too much fiber in the diet my push it through and restrict absorption....things to consider.

mb
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979080 tn?1323433639
all this riba sensitivity stuff makes me reconsider predosing
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979080 tn?1323433639
Mike,

Could you explain the endocrine problems ? Like what they are ect..?
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Avatar universal
I've been thinking about your point about my possible riba dosage-increased absorption problem on tx since you first mentioned it. I agree that this could be a key to what happened. Evidence is that after only 12 weeks I was heavily into extreme chronic fatigue - the result of riba-induced mitochondrial damage. It took two years and lots of fasting to get rid of that problem. I also suspect riba of being the culprit of the autoimmune, thyroid and endocrine problems. Furthermore, increased absorption/overdosage could easily lead to hypersensitivity - there is lots of evidence of that.

A possible problem of re-treating with a decreased riba dose is that the hypersensitivity to riba might not have gone away. I still get rashes, although LDN seems to have decreased the episodes and intensity of those. I believe those rashes to be autoimmune in nature. If my immune system is still primed against riba, any dose, even a much reduced dose, might well set off the same reaction.

In retrospect, I should have quit sooner. The dermatology problems were getting worse by the day, and yet I stubbornly held on even after it was obvious that there was no way I could get to anywhere near 48 months. In light of this discussion and the hypersensitivity issue, that may have been the exact wrong thing to do.

"Bad doctoring" to the extreme. When I requested a meeting about the skin problems, he refused to even meet, directing me to a dermatologist completely out of the loop with the INF treatment program. If he had reduced the dosage when the problems became evident, we might now be talking about re-treating as a viable option. Letting the hypersensitivity go to such an extreme state might well have doomed that approach for all time.

I prefer to look forward though, and I am happy with my program as it is now.
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Avatar universal
"I don't know, you decide."

Yes MB, getting off all those drugs had to help. Good grief, what a cocktail you were on. We both did a long tx and I never had numbers like you but I didn't do any other drugs except tx drugs either.  I took heed from your many posts where you stressed over and over that everything we consume goes through the liver.

I deduced that regardless of whether we think something is liver friendly our liver may think differently so I avoided any and all supplements, pain meds, sleep aids, AD's, HGH etc.  Tylenol for pain.  My choice of course.

To date, despite relapse, my liver enzymes are completely normal so I tend to think you over did it and a good analogy or "concept" from my point of view is you went  from drinking Harvey Wallbangers to ginger ale.

Voila, it's got to make a difference.

Trinity
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233616 tn?1312787196
BTW, the alpha lipoic results are what need to be looked at...

I think the best way to think of this is as follows, no matter what your body needs fat...in fact if you eat no fat, then your body will dissolve your muscles to get the ingredients to make it's own fats (essential fats and cholesterol) because life isn't possible without them.
So the trick is, get the good kinds in, that make the virons have more permiable shells so they can be killed easier...and keep the bad kinds out.
Since we all eat m & m's this is an easy concept...we need the virons to be more like hershey's kisses than M&M's...we WANT them to melt in our hands, so to speak.

that's the whole concept of good oils changing both the health of the virons, but also our overall health as well, because the good oils reverse insulin resistance, heart disease, liver inflammation and a host of other things.

after relapse my numbers shot up...so I got off every helper drug they had me on...
also"
My approach has been to change my lipid profile, alpha lipoic and coq10 are my methods in addition to more fish less meat....
since doing this, HDL is up 60 pt's ldl is down 20... my ALT/ast has fallen 200 pts...could this stategy have helped that??  I don't know, you decide.
All I know is I'm able to sleep on my right side again, and not walking around like there's a knife in my side even though I've lowered my pain meds and eliminated several drugs.

anyone can go to pubmed and read the research on these concept....OK?
so no one has to take a forum members word or a single doctors word for any of it.

just google alpha lipoic in pubmed and start reading the research.

mhudnail...

if my skin was oozing and cracked and red hot angry, I'd have quit too...there's only so much the body can take.

as I told you, I think maybe your absorption of riba was too high...too bad they didn't check your blood levels or they might have discovered that and dialed you back...bad doctoring there. Dr. Karen Lindahl did studies in Sweden and highest blood levels produced what you describe so I'd suspect you absorbed more than many people do.

You also might have had a cytokine event..autoimmune and allergic response do happen, the body can go into autoimmune hyperdrives at any time but when immuno-compromised it's more likely.  In any event, what you are doing with the ALA and LDN is worth a try.

BTW
Check this out....page 143...Joyce C's daughter's story...very hopeful
https://secure.lenos.com/lenos/pcg/LDN2009/Those_Who_Suffer_Much_Know_Much_2009_edition.pdf

mb
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Avatar universal
Bali, thanks for the kind words.

Merrybe, I agree with you. I think diet - especially fat  and sugar intake - is at least as important as proper supplementation. Omega 6 fatty acids (like vegetable oil) feed directly into the arachidonic acid pathway, which is inflammation by another name.  Intracellular omega six fatty acids, therefore cause inflammation within the cells - steatosis by another name. Also, the envelope of hep c virions are predominately omega six fatty acids, if I remember correctly. Excess sugars go directly into fat storage. Omega three fatty acids decrease production of omega six fatty acids, and so are beneficial. Interesting about the caspase inhibitors. I would love to pick HR's brain on that one. Maybe some day I will get the chance. Too bad he doesn't post anymore.

I also agree that VL and inflammation are separate from the fibrosis equation. That is why I think anti-fibrotic substances are important components of an effective hep c supplementation plan.

dsert, I am glad that you try to state your opinions as opinions. However, it might not be as obvious to some of the readers as you sometimes think. I am not personally a patient of Dr. B., but the main planks of his program - ALA and low dose naltrexone, are both important parts of my program, and I think highly of both. And thanks for the well wishes.

Best regards to all - date night with my wife tonite!
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148588 tn?1465778809
It's not my place to sit judgement on anybody's story, but it's always bothered me that your derma isues were allowed to progress to that point. Your business not mine. Your dermatologist may be an expert on IFN, if so, you probably made the right decision. I know that I took my neuro's opinion that my neuropathy was not IFN-related without question.
Really not much of an ALA basher - you may have me confused with someone else ;-) In fact, I think I've even expressed an interest in it in regards my neuropathy. I'll also be the first to admit that many of my opinions are based on what I've read over the last seven years and not on the latest/greatest studies. That's why I try to state them  as opinions. A good example is a recent posting stating that SVR could be predicted on the virus' genetic structure. Six years ago it was proclaimed that SVR could be predicted on a 17 gene sequence *of the patient*. My 'opinion' it's - probably some function of the two.
What I do see, is a pattern of evasion and half-truths surrounding Dr. B. May not mean he's a charlatan. Might mean he's sincere and merely comes off as a charlatan.
Wishing you health in what
ever you decide.
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233616 tn?1312787196
two areas of interest to me have been the lipid envelope and caspase inhibitors.

HR first clued me to the lipid equations.

Simply put, the viron have a lipid shell, like a raincoat, which they wear and which protects them. Cells also have lipid shells. Virons do better in a high LDL high triglyceride environment, ergo changing the lipid profile can reduce the virons ability to invade cells multiply and cause cell death. Diebetics do much worse in treating partly because insulin cancels out interferon, partly because their lipid profiles are out of whack, both of which help the virus. Looking at how to change our biomarkers is a viable adjust to SOC as it increases the likelihood of a positive outcome, a cure.

the caspase part of the equation is important as well because these also effect apoptosis, cell death, and the higher your markers here, the more cells death you will have....it's not as simple as high viral load=more damage, because strictly speaking it's not the virus itself but how much immune response occurs that creates inflammation and hence apoptosis.

in both cases, it pays to read the research before reaching conclusions however it should be noted that more and more standard medical clinics are telling their patients to watch their fat and sugar intakes etc...which is all because of the research showing correlations between how quickly HCV advances and what we eat.

mb
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979080 tn?1323433639
Mike,

Just got say this.

Everytime I think of your journey including your biopsy experience  ect.ect..ect...

can`t help but admire your stamina , perseverance and drive for life

with which you have achieved stunning results for yourself.

You are an inspiration to anyone that has not been able to ride of into

the sunset after SOC treatment.

As for myself I find the SOC decision one of the hardest I ever faced and

there is not a day that goes by where I not think how you turned such a horrible

situation around to where you are today.

It gives me courage. That simple !

Hats of to you !

Many people do not realize how enormously challenging and difficult it is

to find another path outside the box and as a result they end up not finding it.

Extraordinary results require extraordinary people.




Bali

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Avatar universal
You asked,

"Explain to us again why you "can't do tx"."

I quit treatment after 12 weeks because of extreme dermatological side effects. At the time my VL was 2. I had half-inch thick calluses covering the bottoms of both feet and both hands that split and bled constantly. I also had open wounds on the back of my scalp that seeped serum down the back of my neck, also continuously. I also had angry red welts over most of my body that itched constantly. I had very few patches of skin that were not affected.

When I called my Gastroenterologist and said "you have to look at this", he said, "Don't come in here, go to a dermatologist!" So my dermatologist was very alarmed and said, "It's a response to the drugs. The only way to stop it is to stop the drugs," which she highly recommended. Of course, I also came out of it immunocompromised, and with thyroid and endocrine problems. But the skin problems were the reasons I stopped. Contrary to your theories, I doubt that anger management and a good psychiatrist would have made any difference.

Since INF/riba did this to me in twelve weeks, re-treating and expecting a different result seems to be foolhardy. Hence, until there is a non-INF/riba treatment, I will continue to happily do what I am doing.

I am geno 1a and have had hep c for 35 years. I had F3 by biopsy five years ago, and I firmly believe that if I were not doing my alternative protocol, including ALA IVs, I would have progressed to a solid F4 by now. Luckily, there is no indication that that has happened, based on my labs. LDN has dropped my VL to under 3000 (my previous high was above 7 million), my enzymes are normal, and all my LFTs are normal. In fact all of my labs (bilirubin, albumin, BUN, platelets, hemo panel, etc.) are now normal.

What I object to in your posts is the fact that you do not support your proclamations with evidence. If you bash a therapy that could help people based on pure speculation, but you state it as fact, who does that help? Why try to convince people that ALA is a hoax, when the evidence is overwhelming that it is hepatoprotective? Do you ever check out your theories in the scientific literature to see if they are even possible before you post them?  Does the fact that you are wrong even matter to you?
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