Dangers of Alpha Lipoic Acid IV Therapy !

Here is just one of the many dangers of ALA IV therapy:

This is from Pubmed which is considered to be very trustworthy by the medical community.

http://www.ncbi.nlm.nih.gov/pubmed/19616616

"We conclude that large doses of lipoic acid displace sulfhydryls from binding sites, resulting in depletion of serum cysteine, but also pose a methylation burden with severe depletion of liver S-adenosylmethionine and massive release of S-adenosylhomocysteine. These changes may have previously unrecognized deleterious (harmful) effects that should be investigated in both human disease and experimental models"

[Upbeat]

100 mg/kg lipoic acid in a rat model.

You have to be kidding.  Do you have any idea how much that would be in Human terms?

[mhudnall]

I agree. I weigh 80 kg. That equals a dose of 8000mg. I take 400mg per IV. This smells like a hit-job to me. Twenty times a regular dose of most things would be harmful, if not fatal.

[mhudnall]

"We conclude that large doses..." That is a true statement, however, a truer statement might be "We conclude that incredibly huge doses..." might be more accurate.

[copyman]

just going by what is published in Pubmed. "should be investigated" , "harmful effects".

If berkson claims can be posted here then articles from Pubmed to counter berkson can be posted as well. I will believe peer reviewed pubmed articles before berkson.

"These changes may have previously unrecognized deleterious (harmful) effects that should be investigated in both human disease and experimental models"

[copyman]

I will be posting many more links in the next few days about the harmful effects of ALA IV's.

I think a low dose in caps is fine and helpful. But not IV's costing thousands of dollars. There is where it becomes a scam.

[merryBe]

so, in other words, if we drink a quart of oil a day it will make us sick ??

who is going to do that? who finaces these studies and why is what I wonder!!

you might as well add what protein overload, or oxygen overload, or severe weather exposure will do to people. Every severe exposure does harm.

the truth is essential fatty acids are crucial to good health.
they exist in most of the foods we eat, they are so crucial the liver MAKES them even when we don't eat them, because without them we die.

essential fatty acid prevent oxidation, a chief culprit in both inflammation, fibrosis, and HCC....let's look at the pub med proofs there as well.

do people need IV's of the stuff...no....they don't, that I think may be if not a scam, at least taking advantage of folks not knowing the chemistry or the science....
you can change your profile through diet very easily.  I increase my HDL 40 pt's in only 2 months...just by minor changes to diet and a supplement.

I'm getting really tired of studies where they give rats 100 to 1000 times more of something than would be normally found....and then pronounce the substance as evil.
I'm very suspicious of who is behind these type aberant studies...yes, we do need to know when something becomes toxic, but we cannot conclude that an overdose makes a therapeutic level bad...that is faulty logic.

Which things can you name that would not produce reactions if 100 times more was taken than normal?

answer:  nothing.

Even air and water aren't safe in such cases. If you took 100 times more water everyday than you need you will die, likewise with oxygen same thing...dead....by this standard then, the ALA is pretty safe, even overdosed to the max it doesn't kill you like most things would!!


mb

[copyman]

I know this is off topic but can you elaborate about the HDL increase. what supplement did you take. I'm trying to raise my HDL. please dont say ALA injections :-)

thanks

[Bali05]

If anyone is truly interested in the Berkson protocol I recommend go and see the

man and talk in person to his patients.

I have done that extensively and it was a great investment. Nothing like talking to

people who arrived there with blown up spleens and bleeding  varcises ect....

and who are now doing much ,much better.

There is no article , study ect...... that can ever ever replace

real people and there real life stories and experiences.

By the way the amount of ALA given at Dr. Berkson is carefully

measured on case by case basis and he was FDA authorized

as the first physician ever to do ALA IVs in the 70s. Yes that

long !

[merryBe]

here' a good primer on lipoic acids...

http://en.wikipedia.org/wiki/Lipoic_acid

also note 1st paragraph, essential to life, you die without it...your gut and liver make it...

also note 309 studies follow this exegesis

309 medical studies...we report, you decide.

I can tell you this, I eat oatmeal for breakfast, sardines for a snack (many foods contain lipoic acids but because I am trying to keep my iron rich food consumption down, I choose to take a supplement and to choose foods rich in lipoic acid but not as high in iron (meat and broccoili are good but high iron.)
the supplement means I could increase my HDL profile without extra iron.
results=HDL rose nicely, LDL remained close to the same, overall profile is more hdl than ldl and low triglycerides now, before, not so.

other benefit= my neuropathy has reversed...I am no longer having the pins and needles or sharp stuck with a pin or dull deep aches I was having in my feet.
In fact, no hand pain the last couple months....very surprising.
my blood sugars are normal again, I have no need of type 2 meds so have discontinued them..
my seizures are much better than before and I am able to sleep again without the dopamine antagonist requip. Actually doing better without it since adding the ALA than I was doing with the requip and no ALA....(and no headaches like the requip gave me...so this really does settle down nerves, I can see why the MS community has come fully into this court.

all these corrections were well documented 50 years ago by Linus Pauling, Nobel Prize winner for his research into nutritional components.
they have been restudies and reconfirmed by researchers all over the world...

thank goodness people can pull up all the studies themselves and not rely on one or 2 abberant studies.

ALA is extensively used now by the diebetic (diabetic) and MS community because it is known to sooth nerves, reduce neuropathy, increase normal metabolic rate, reduce insulin resistance, and on and on.  Lately it is receiving even more press for it's role as an antioxidant and possible benefits to liver patients in need of oxidative relief although it will be a while before we know for certain it's role here it appears to not compromise methalation unless overdosed form what I've seen and read.
The truth is, most anything will mess with methalation if you eat enough.
HR, medical doctor, tried to warn us about eating small amounts more often...not sure who took that advice but it's true, a compromised liver can't take as much or anything....so a word to the wise here.
Another essential known as PPC is also showing much promise in this area of oxidation relief as well as fibrosis reversal. If you stop to think about it it makes sense...abberant cells leads to more fibrosis, the sooner a cell goes rouge the sooner it causes distorted growth and scarring around it...

Obviously 309 studies is just the tip of the iceberg, but it is clear that oils do effect oxidation.

Anyone who owns a cast iron skillet knows how this works.

If you wash your pan, and leave it unoiled it will oxidize and start turning the tell tale red immediately, but if you season it with a little oil rubbed on, it will not oxidize.

Since oxygen interacts with stored iron in the liver, the idea is to keep oxidation low, as oxidation produced free radicals which are the precursors to cancer. The more free radicals formed, the more likely one will succumb to liver cancer. The free radical is what causes the cell to mutate into a cancer cell. Oxygen causes free radicals...we need it to breathe and live, but too much is deleterious.
Liver cancer is the 7th largest killer in the USA.
Ergo, low iron and good fats offer protection against the dreaded HCC to which 3-5 people reading this, out of every hundred reading, will succumb this year.

Since so much information exists as to the benefit, and only a spare few studies using overdosing exist to the contrary, I leave it to the reader to decide whether an ounce of prevention might be worth a pound of cure here.

BTW, liver cancer is almost never survived, it is a rapidly spreading almost always fatal condition so this might be something to think through in advance. If you have HCV you are at a much higher risk for liver cancer, higher than the 1 in 7 rate that exists in the general populace.
In fact at the HCV rate of 3-5% per annum that means in 10 years between 25% and 50% of us reading this will have developed HCCancer. That's scary stuff.

mb

[mhudnall]

As merrybe said, lipoic acid is an endogenous substance, meaning it is made by the body.  It is essential to life. The liver is packed with it when we are young; our bodies make less of it as we grow older.

Lately you have been touting vitamin d on the board, which I approve of. As with lipoic acid, there is tons of evidence showing its therapeutic value. What would happen if you took a 20-40 X dose? It's called vitamin d toxicity. Same with vitamin a. Does that mean you shouldn't take safe doses of those vitamins?

What would a 20-40 X dose of INF/riba do to you? Obvious damage. Does that mean you shouldn't take the prescribed dose?

[Bali05]

ALA like everything else can be overdosed. Dr. Berkson writes about it in his book.
I think they tested it on monkeys to see what happens if it gets overdosed.

[Claire_MHModerator]

Hi, folks,

Several posts have been removed from this discussion because they were off-topic and/or disrespectful.  I appreciate your understanding.

Claire
MedHelp.org

[copyman]

I will say it again. I do believe in supplements INCLUDING Alpha Lipoic Acid. I do NOT believe in it with IV use, especially with the expensive way treating with berkson. I think it is a scam and dangerous. I feel he is taking advantage of people with serious illness who have no where else to turn.

If there was any validity in berkson's claims it would be FDA approved and covered by insurance !!!

Many studies done and still no FDA approval, what does that tell you............It tells me that although there have been some promising results NOTHING have been proven !!!

That is all I have to say on this subject. I will continue to post the dangers of "IV" ALA use.

[Bali05]

supplements covered by insurance ? that would be great indeed.

By the way in Germany you need rx for alpha lipoic acid and it is

therefore covered by insurance. Dr. Berkson used to import Thiotic Acid

directly from Germany but because of import issues he now

uses ALA from European Source made by McGuff Compounding Pharm

in Ca, why because over there it is regulated as medicine

and you do not get stuff from China which is where most of the US supplements

are coming from these days.

[mhudnall]

You said, "If there was any validity in berkson's claims it would be FDA approved and covered by insurance !!!"

FYI, the FDA only approves drugs. Alpha lipoic acid is not a drug, therefore it is not possible for the FDA to approve even it even if it wanted to. The FDA does not approve apples either, that does not prove they are unsafe.

Insurance does not cover many therapies, including many standard therapies that it simply does not want to cover, for instance, pre-existing conditions. Insurance coverage does not validate or invalidate any therapies. It has nothing to do with validity.

You also said, "This is from Pubmed which is considered to be very trustworthy by the medical community." and "I will believe peer reviewed pubmed articles...

Here are two pubmed articles authored by Dr. Berkson, who happens to be the FDA lead investigator of lipoic acid:

http://www.ncbi.nlm.nih.gov/pubmed/20042414

http://www.ncbi.nlm.nih.gov/pubmed/16484716

Both cases involve intravenous administration of alpha lipoic acid in combination with the oral administration of Low Dose Naltrexone. While these cases involve pancreatic cancer, and not hepatitis c, they certainly do involve the IV administration of alpha lipoic acid, which you claim is unsafe. Additionally, there are a great many examples of studies involving the IV administration of alpha lipoic acid on pubmed with very positive outcomes, including Insulin Resistance, Diabetic Neuropathies, etc, etc.

I am looking forward to see more of the pubmed articles that you claim validate your theories.

[mhudnall]

By the way, the two articles authored by Dr. Berkson above involve the intravenous administration of Alpha Lipoic Acid and the oral administration of Low Dose Naltrexone. This is exactly the same protocol that he uses for his hepatitis c patients. Therefore, if we are talking strictly about the safety of the protocol, these two articles are relevant to the conversation.

[merryBe]

yes, I also heard of the pancreatic reversals...I wonder if that's what they gave to that woman who does the Cancer Center's of America commercial...she had pancreatic cancer...

don't know....I do know like anything we don't want to overshoot on this or any med, natural or synthetic....which is why I got my blood work 2 months ago, and will again this week...I don't want to overshoot...if my number is still rising I will dial back my dose.

however, I think the oxidation is a bigger issue than many folks think.

In fact some geologists say the reason people lived so long (if you believe the biblical ages assigned to the patriarchs) is because the oxygen levels were different pre-flood....it's also impossible for the dinosaurs to have reached their sizes in our current atmospheric pressures....so the theory goes that something striped a lot of the atmosphere away, an asteroid maybe one that hit, or a passer by, who knows....one in Russia and another on the Yuccatan...we weren't here so who knows...but this event changing atmosphere, shifting the continents etc...changing composition and pressures etc.
how does this tie in to alpha lipoic???
well,
the way I see it is that radiation and oxidation are the 2 largest producers of free radicals which degrade cells turning them into malignant monsters.......so if the ozone and other layers were much thicker...people would have lived a lot longer because without the forces that destroy and break down cellular structure there's no telling how long things could survive, we do have repairative features built into each cell....so....in a different atmosphere both plants and animals would have been much bigger...which the geology (and the bible as well) attest to having been the case, huge people and huge creatures....they also could have lived far longer.
maybe seeing rats live much longer is a hint here...rat metabolism is surprising close to human metabolism...why do they live so much longer when this item is added???.

In any event, if we return to diets higher in HDL essential fatty acids we will see some benefits because these allow us to absorb oxygen yet protect against it's damaging effects.

I'm glad to see everyone basically agreeing that some supplementation here may be wisdom....we can wonder whether every doctor out there is on the up and up...but the bottom line is not to throw out the baby with the bath water!!!

[GoofyDad]

In fact at the HCV rate of 3-5% per annum that means in 10 years between 25% and 50% of us reading this will have developed HCCancer. That's scary stuff.

How many hunderds of HepC folks are on ths board? How many diagnosises of HCC have we seen in our little cluster of miscreants? The numbers don't add up.

[Rockerforlife]

SVR Improves Survival, Risk for Liver Cancer, Decompensated Liver Disease and Liver Transplant/Death - Also, Transient Viral Suppression (breakthroughs/relapsers) Improves Clinical Outcomes Too


  
  Reported by Jules Levin
AASLD Oct 31-Nov 3 209, Boston, MA

The main outcome of this study is that SVR reduces risk for HCC, decompensation, liver transplant/liver death any other clinical outcomes compared in the HALT-C Study, which looked at peg/rbv nonresponders and included patients with advanced disease. This is good because some federal government committees have suggested there is not adequate proof that SVR improves clinical outcomes for patients and therefore have not supported federal funding for programs for patients including HCV screening and surveillance and therapy as well.

Although the main outcome of this study was that that SVR reduces cancer, death, clinical outcomes, decompensation.....However......As we know patients included in the HALT-C study had advanced liver disease. Two years ago the HALT-C investigators reported at AASLD that maintenance therapy did NOT provide clinical benefit. These headlines made quite a splash and many clinicians stopped using maintenance therapy as patients & clinicians presumed it had no benefit. Several months later at EASL in April HALT-C investigators presented that if patients had a 4-log viral load reduction there appeared to be some benefit. Now at this AASLD last week the same investigators reported patients in HALT-C who were breakthroughs/relapsers, "patients with viral suppression", had significantly reduced risk of developing any liver-related complication when compared with non-responders; see graphs and table below: reduced risk for "any outcome, decompensation liver transplant/liver death" appear statistically significant, reduced risk for HCC was not statistically significant between nonresponder and breakthrough/relapser but there appeared to be a reduced risk in the number of events.

By the way the HALT-C researchers have refused to share slides after their presentations so they can publish their results. They refused to share the slides 2 years ago after they presented at AASLD that maintenance therapy was NOT beneficial. If the original design of their study inquiries had been better designed to include looking at partial responders we would have had better results 2 years ago and better understood how to use maintenance therapy.

[eureka254]

You commented:
"In fact at the HCV rate of 3-5% per annum that means in 10 years between 25% and 50% of us reading this will have developed HCCancer. That's scary stuff.

How many hunderds of HepC folks are on ths board? How many diagnosises of HCC have we seen in our little cluster of miscreants? The numbers don't add up."

At a new-diagnosis rate of 3-5% a year, the projected rate in 10 years wouldn't be 25-50%, it's be less than 1/20th of the 3-5%, and of course, that rate would also be per annum.  No need to be scaryDad ;).

On the flip side, in our little cluster, I'm personally aware of 4 diagnosis of hcc within our current membership.  Sadly, the majority of the hcv-hcc diagnosed individuals probably wouldn't be here, as one-year mortality rates post-diagnosis of hcc is close to 90%.

Everyone:
... are there any large-cohort studies, retrospective or otherwise, of standard dose (oral or IV administration) of ALA as it impacts the hcv/hcc population?

[eureka254]

The above should have said:
"At a new-diagnosis rate of 3-5% a year, the projected rate in 10 years wouldn't be 25-50%, it's be less than 1 in 20 of the 3-5% to develop cirrhosis, and of course, that rate would also be per annum with hcc incidence in the lifetime of that 3-5% population being less than 1 in 400."
~eureka

[copyman]

Side Effects of Alpha Lipoic Acid

Digestion Related Problems
One of the very common side effect of alpha lipoic acid is, problems related to digestion. It leads to problem like nausea, upset stomach, stomach ache and constipation.

Sugar Level Problems
It is also known to decrease the sugar level to a large extent. This can be beneficial to diabetic patients but, it might pose a problem to healthy individuals as extremely low sugar level is not recommended for them. You may also like to know more on diabetes blood sugar level.

Skin Related Problems
Lipoic acid can also gives rise to skin hives and itching skin will be also observed in very rare cases. Also, excessive sweating is observed in people suffering from alpha lipoic acid side effects.

Respiratory Problems
Respiratory problems are also observed commonly as a result of alpha lipoic acid side effects. Problems like difficulty in breathing, tightness in chest and increase or decrease in the pulse rate are the most common problems associated with it.

Cold Related Problems
There are chances of some people suffering from common cold, cough and runny nose. In some cases, all these disorders might also be accompanied by fever. The person may experience headache as well.

Other Side Effects
Apart from the above mentioned problems, fatigue, insomnia and over stimulation are also observed commonly. Some people might experience tingling sensation in the whole body, muscle cramps, and swelling of the face and extremities. Flatulence is also one of the side effect of alpha lipoic acid.

Consume alpha lipoic acid but, make sure that you consume in the right amount to stay away from alpha lipoic acid side effects. It should be present in the body in optimum amount, else it can cause brain related problems like stroke, Alzheimer's and Prrkinson's disease. If you realize that you are suffering from alpha lipoic acid side effects, visit a doctor without any delay.

.................................................................

Side Effects
Side effects of alpha lipoic acid may include headache, tingling or a "pins and needles" sensation, skin rash, or muscle cramps.

There have been a few reports in Japan of a rare condition called insulin autoimmune syndrome in people using alpha lipoic acid. The condition causes hypoglycemia and antibodies directed against the body's own insulin without previous insulin therapy.

The safety of alpha lipoic acid in pregnant or nursing women, children, or people with kidney or liver disease is unknown.

Possible Drug Interactions
Alpha lipoic acid may improve blood sugar control, so people with diabetes who are taking medication to lower blood sugar, such as metformin (Glucophage), glyburide (DiaBeta, Glynase), should only take alpha lipoic acid under the supervision of a qualified health professional and have their blood sugar levels carefully monitored.

Animal studies indicate that alpha lipoic acid may alter thyroid hormone levels, so it could theoretically have the same effect in humans. People taking thyroid medications such as levothyroxine should be monitored by their healthcare provider.

[mhudnall]

It has been well established that hepatitis c increases oxidation and decreases systemic antioxidant levels. Hep c increases the generation of ROS (reactive oxygen species) which cause much of the damage.

http://www.ncbi.nlm.nih.gov/pubmed/16484716

From the above link:

"Infection with hepatitis C is associated with increased levels of ROS/RNS and decreased antioxidant levels."

Increased oxidation also plays a role in HCC:

"Most hepatocellular carcinomas occur in cirrhotic livers, and the common mechanism for hepatocarcinogenesis is chronic inflammation associated with severe oxidative stress..."

also, ROS (reactive oxygen species) generated by hep c play a large role in the increase of fibrosis:

"ROS/RNS can activate hepatic stellate cells, which are characterized by the enhanced production of extracellular matrix and accelerated proliferation. Cross-talk between parenchymal and nonparenchymal cells is one of the most important events in liver injury and fibrogenesis; ROS play an important role in fibrogenesis throughout increasing platelet-derived growth factor."

ALA is a master antioxidant. It is both water soluble and fat (lipid) soluble. It is also a precursor of glutathione, our best intracellular antioxidant and the linchpin of our body's antioxidant system. Glutathione recharges our water-soluble antioxidants (vitamin c) and our lipid soluble antioxidants (vitamin e). Lipid soluble antioxidants are at a premium for us because lipid peroxidation is a main culprit in the pathogenesis of the disease, as well as the generation of HCC.

For all of these reasons, ALA is one of the best weapons in our warchest against hep c damage. We need more antioxidants than healthy people, and ALA is one of the best antioxidants available to us.

[mhudnall]

Copyman is correct to warn about the use of ALA by diabetics on insulin. ALA is well known to decrease Insulin Resistance; therefore, if a diabetic is on insulin and takes ALA, his blood sugar levels should be closely monitored, and a reduction of the amounts of insulin you take might be necessary.

[Willy50]

The dangers of oversimplification, IMHO.

Think about this, one of the various meanings of "objective"

3 a : expressing or dealing with facts or conditions as perceived without distortion by personal feelings, prejudices, or interpretations.
-----------------------------------------------------------------------

Every time I read such threads I am perpetually assaulted by posts which fall victim to all of these shortcomings.

This thread starts out with the apparent attempt to misinform.  It calls the use of ALA as dangerous, but fails to make note that one has to OD on the substance for it to become dangerous.  One also fails to hold forth the "solution" .....SOC...... to remotely the same standards by which one wants ALA judged.

I don't know the answer, but this is not an "objective" inquiry or warning.  Rather it is an attempt to prove ones view using whatever means one can.  I read these threads and think; this is why doctors tell patients to stay off of the internet.  

I know that people mean well, but laymen arguing either way as though they can prove or disprove efficacy is kind of naive, IMHO.

I'm in favor of allowing such threads as long as over the top unsubstantiated claims are not made.  It seems to me that Bali and Mike H have had reasonable results with their use of these types of adjuncts.  Possibly, if there are negatives with treating this way there should be evidence of it on the internet.  Equally certain, there are more than a few anecdotal accounts of bad responses to IFN-RBV therapy.

I think that to some extent, this is a tempest in a teapot.  Relatively few will treat with IV ALA.  In a few years relatively few people will do SOC; it will all be triple or quadruple drug therapy, or..... possibly.... *merely* 2 stat C drugs w/o IFN-RBV.

At that point, no one will care a whit about the therapy that at MedHelp anyway, has a few with their knickers in a twist.  ; )

Carry on, carrying on.  : )

PS....it seems to me incorrect thinking to assert that a compound or drug given by pill becomes a scam when administered by IV.  I believe that there are many type treatments which require the use of an IV.  It can either be to administer vit B-12, or iron for instance instead of relying on slowly giving people pills.  I am under the impression that NAC is given to Tylenol OD victims as well.  One can increase the dosing, sidestep the digestive process and also net faster results that through the use of pills administered orally.  IV administered ALA is also likely of better quality or purity that the cr@p that one may buy at the 5 and dime.  Doing it under a doctors care may be safer than treating as some of us do; reading the internet, making a *buy* at the Walmart and treating ourselves.  : )

Willy

[mhudnall]

I agree completely with your post.

I would also point out that oral administration of ALA is quite beneficial; it is easily absorbable and it is important, in my opinion to take the pills morning and night. No one can continually do IVs, and sporadic IV administration is not as good as continual oral administration. However, occasional IVs in conjunction with oral administration gives greatly increased benefits, also IMHO.

The notion that IV administration is dangerous per se can be easily contradicted by a stroll through any hospital or ER. The number of people hooked up to an IV bag usually greatly outnumber those who are not. I see no difference in a doctor giving you an IV in the hospital as opposed to his clinic. Also, these IVs are often not as expensive as some would lead you to believe. That being said, many cannot afford any out-of-pocket expense, and for those people, sadly, even oral administration may be a financial burden.

[Bill1028]

"For all of these reasons, ALA is one of the best weapons in our warchest against hep c damage. We need more antioxidants than healthy people, and ALA is one of the best antioxidants available to us."

Are all antioxidants good against HCV?

[Rockerforlife]

Shooting food into your viens do not sound like common sense too me....what next...snorting vit C?

[mhudnall]

Vitamin E is good. Apparently, Vitamin E is not and resveratrol has recently come under suspicion for aiding in the replication of the virus.

http://www.ncbi.nlm.nih.gov/pubmed/20066737  

Vitamin D is good. Green tea extract and curcumin are good, milk thistle inhibits the replication of the virus.

http://www.ncbi.nlm.nih.gov/pubmed/19962982  

Vitamin A is depleted in hep c as is beta-carotene, so it might be wise to supplement those. Also Activated stellate cells, which are associated with fibrogenesis, actually store vitamin a and their depletion may have deleterious effects on the process of fibrosis:

http://www.ncbi.nlm.nih.gov/pubmed/19071229

Basically, a diet rich in fruits and vegetables provides high levels of polyphenols, all of which are antioxidants.

[orphanedhawk]

Common sense would suggest not overinduliging in anything, even that which is good for you.
Too much of anything isn't good for you. Don't eat and you die. Eat too much and you become obese. You can eat yourself to death.

All things in moderation isn't a bad credo.
But the very best thing is to eat healthily, get some exercise and reduce stress.

Coming here, I hear groups of people trying to grasp a brass ring that is on a different carousel for each one.
Our bodies are different and HCV affects us differently, which makes it all the more frustrating.

[Trinity4]

"Basically, a diet rich in fruits and vegetables provides high levels of polyphenols, all of which are antioxidants."

Sounds like plain old common sense to me.  Don't need to spend money or add supplements to my diet to know that.  Yep, just plain old common sense.

[Trinity4]

LOL....like minds

[mhudnall]

I agree. I believe that diet is more important than supplementation. Plus, the benefits of supplementation might be easily voided by bad diet. However, as merrybe pointed out, lipid peroxidation, or oxidation of fats, is a key to hep c pathogenesis. Most food-based polyphenols are water soluble, with rare exceptions. Since Vitamin E, which is generally regarded as the most prevalent lipid-soluble antioxidant, has been taken off the table, that makes alpha lipoic acid that much more valuable as one of the only lipid-soluble antioxidants left (besides vitamins a and d).

[nygirl7]

also be per annum with hcc incidence in the lifetime of that 3-5% population being less than 1 in 400."

I just watched yet another friend of mine who had HepC (she didn't treat because she didn't want to lose her hair) - this is the third person I've known with HCV who developed HCC and died of it because they thought treatment was worth than the disease could be until it was too late.  These are personal friends - not a group off the internet but people I've known for many years. Two women one man but all about the same age (45 - 50).

Believe me, it makes me more serious about truly eradicating the disease than anything and unless it was proven without a shadow of a doubt that these meds would work...........its just not worth it.  No sir not one little bit - it's just too horrendous a death to play with.

[mhudnall]

Sorry, in my post to Bill above there is a typo in the first sentence that is misleading. It should read that Vitamin C, not E is good. Apparently Vitamin E is bad in that it aids in hep c viral replication.

My bad.

[jdwithhcv]

I am so sorry to hear about your friend.  How sad that fears (maybe unfounded) about potential treatment side effects kept her from saving her own life.  

Sure, interferon and ribavarin can cause some very unpleasant side effects, but for people like us there really is nothing else to do except gather up our courage and fight this horrible disease.  Every time I hear of a life lost to this plague it breaks my heart.  Losing your hair (temporarily) or any other side effect from treatment is nothing compared to losing your life.

How sad!

[Rockerforlife]

Apparently Vitamin E is bad in that it aids in hep c viral replication. ??????

where did you see this?..VIT E is in a lot of foods,like nuts and seeds,especially sunflower seeds...



Damaged liver tissue is depleted of antioxidants, not just vitamin E, but also beta-carotene, vitamin C, and lycopene. Taking these antioxidants helps toxin-damaged liver tissue recover. If they are taken soon enough, they may even prevent toxin damage from occurring.

http://www.the-vitamin-and-supplement-guide.com/vitaminEandfibrosis.html

[mhudnall]

http://www.ncbi.nlm.nih.gov/pubmed/20066737

"Vitamin E also enhanced HCV RNA replication as reported previously...

However, as you point out, the antioxidant effect of vitamin e has been shown to be helpful to HCV, so take your pick. Those two effects are not mutually exclusive.

[Bill1028]

You are linking a story from an Internet vitamin sales website.  That is not even close to a clinical study.  That is the reason that these things should proven scientifically.  It also points out that there is dangers in making assumptions.  As far as I know, there are no clinical trials on ALA that show any benefit.  Dr b claims to to be a former FDA principal investigator of ALA and yet there is not one peer reviewed paper on ALA and HCV.  How come?

[mhudnall]

"...there is not one peer reviewed paper on ALA and HCV...."

http://www.ncbi.nlm.nih.gov/pubmed/16082287 - this study included ALA as one of the tested nutrients from the peer-reviewed journal J Clin Gastroenterol. 2005 Sep;39(8):737-42

"CONCLUSIONS: These data suggest that multi antioxidative treatment in chronic HCV patients is well tolerated and may have a beneficial effect on necro-inflammatory variables. A combination of antiviral and antioxidative therapies may enhance the overall response rate of these patients."

A 1999 paper Berkson authored, before he added Low Dose Naltrexone to his protocol:

http://www.ncbi.nlm.nih.gov/pubmed/10554539

"The triple antioxidant combination of alpha-lipoic acid, silymarin and selenium was chosen for a conservative treatment of hepatitis C because these substances protect the liver from free radical damage, increase the levels of other fundamental antioxidants, and interfere with viral proliferation. The 3 patients presented in this paper followed the triple antioxidant program and recovered quickly and their laboratory values remarkably improved. Furthermore, liver transplantation was avoided and the patients are back at work, carrying out their normal activities, and feeling healthy."

The lack of clinical trials reflect the lack of funding. Since neither Alpha Lipoic Acid  or Low Dose Naltrexone are proprietary (the patent ran out on LDN, and is now in the public domain), no special interests exist that are willing to invest the large amounts of cash necessary to conduct clinical trials. Most clinical trials are funded by drugs companies with proprietary interests - these funds are re-couped because they own the patents and therefore benefit from the resulting therapies. The purported mission of the FDA and NIH is to fund investigations into promising novel therapies, but they rarely conduct trials that are not in the interests of the drug companies. And the ALA and LDN therapies are most definitely not in the interests of the drug companies.

[mhudnall]

"As far as I know, there are no clinical trials on ALA that show any benefit."

I might add, there are no clinical trials that show lack of benefit either.

Dr. Berkson can hardly be blamed for not funding hugely expensive clinical trials. He certainly has been urging that that should happen.

[mhudnall]

BTW, the first link above is a phase one clinical trial performed in Israel.

[Bill1028]

"I might add, there are no clinical trials that show lack of benefit either."

The burden of proof is on the one that makes unsubstantiated claim, not the other way around.


"Dr. Berkson can hardly be blamed for not funding hugely expensive clinical trials. He certainly has been urging that that should happen."

He should provide proof of his theory before taking $1,000s from people.

I did a little digging on his 1999 paper which btw was not peer reviewed.  He claimed that the 3 patients avoided a transplant within a year of therapy.  There was no reason that they should need a transplant because they were healthy and their platelets were twice as high as mine before he treated them.  I had a professor that used to say long on words and short on facts.  

NIH grants studies all of the time thing that show promise.  What exactly does a ala principal investigator do for the FDA?

[Rockerforlife]

i get all my selium from mushrooms extracts,mushrooms are chocked full of this mineral,and other goodies

[Rockerforlife]

Food Sources Of Alpha Lipoic Acid (ALA)
ALA is found in many foods, however in most foods it is present in very low levels.

Foods with slightly higher levels of alpha lipoic acid include [1,2]:

broccoli
heart
kidney
liver
brussels sprouts
rice bran
peas
spinach yeast extract


ive been eatn about a cup of broccoli  and peas everyday for the last few years,so looks like im gettn my ALA

[Rockerforlife]

ALA is highly concentrated in certain plant oils such as flaxseed oil and to a lesser extent, canola, soy, perilla, and walnut oils. ALA is also found in wild plants such as purslane. Once ingested, the body converts ALA to EPA and DHA, the two types of omega-3 fatty acids more readily used by the body.

Looks like im gettn my ALA again from flax seeds because i eat a 1/4 cup of them ground up with my whey shake

[mhudnall]

Dr. Berkson has been pretty open about reporting the case histories of his patients. Those are hardly unsubstantiated claims. If you don't believe him, then don't use him. If you don't believe that the FDA appointed him as the lead investigator of lipoic acid, that is your prerogative. If you believe that the moon landing was a hoax, more power to you. I know you are on tx; I hope that works for you. I doubt somehow that you have genuine interest in any other therapy.

You asked for a clinical trial involving ALA and Hep C. I gave you one. Not satisfied, you go off topic, and attack Dr. Berkson personally, like so many others on this board. What about the use of ALA for Hep C patients? What does your dislike of Dr. Berkson have to do with that topic? And who does it serve?

Clinical trials are often the result of doctors and patients using novel therapies that appear to help, without the prior support of the medical establishment. When those case histories become too obvious to ignore, then someone finds a way to get the clinical trials done.

Here is an example with Low Dose Naltrexone. It was used for treatment of Crohn's disease for well over ten years before someone at a teaching hospital in PA did clinical trials. The result of the clinical trials? Over 2/3 of the patients with acute Crohn's disease went into total remission in 3 weeks. With no side effects. That same hospital is now looking at doing clinical trials using LDN for hepatitis c, based on similar case histories. Without the case histories, the clinicals would never get done. But you seem to be making the opposite point, that somehow clinicals should be done first, before there is any evidence of efficacy. That is disingenuous, in my opinion. But, I know this - people with the same bias as you were arguing against the use of LDN for Crohn's all of those years, demanding to see clinical trials. How many needless bowel resections were done in that time? How many patients were ravaged by steroids, the SOC for Crohn's, in those ten years?

Let's just leave it at this: there is plenty of evidence that ALA is beneficial for hepatitis c patients. Those who are not on treatment might want to look into using it to protect their livers. Or they might not. Everyone is free to choose. God bless America!

[can-do-man]

Sometimes i get the feeling that some are trying hard to convince themselfs their not just throwing alot of money away for nothing. Or maybe they have a vested interest... Oh well, just my opinion. To each their own.

Best to all
cando

[merryBe]

the rate applies to those who continue to carry the disease. They often succoumb to cancer finally and not just plain old liver failure.

the variance in the rates is because it depends on what genotype you are talking about, and what study...they all differ as to opinion somewhat, so that rate for the US I've seen as low as 1% as high as 5%.

in japan the rate is 7%....I believe this means either type 4 causes more free radicals, or else they are tying more deaths to the hcc than we are, and following/correlating the 2 conditions more closely, not sure which.

here's one study, I can't give an accurate number because the researchers can't agree. Still, if I were to take the midrange of say 3%...if it was 3% per annum....that would equate to 30% of us as an example, in 10 years if you follow.

here's that study:  http://cme.medscape.com/viewarticle/560012_3

mb

[copyman]

great points from both of you.  good work

[Bill1028]

Mike, there you go again, we are talking about ala and hcv.  Whenever you are asked to produce evidence on ala and hcv you always retreat to ldn and crohn's disease, that is a different forum.  For the record, it appears ldn has some validity with crohn's disease and is being studied.  Hmm, sorta blows a hole in your theory as to why ala is not being studied doesn't it?  

Mike, you have been claiming that there is plenty of evidence that ala is beneficial why not share that evidence with us?  Keep it simple, more evidence and less words.  

[copyman]

ditto. i would love to see those studies.

[mhudnall]

http://www.ncbi.nlm.nih.gov/pubmed/20153726

Accumulating evidence suggests that plasminogen activator inhibitor (PAI)-1 plays an important role in the development of hepatic fibrosis via its involvement in extracellular matrix remodeling. We previously reported that alpha-lipoic acid (ALA), a naturally occurring thiol antioxidant, prevents hepatic steatosis by inhibiting the expression of sterol regulatory element binding protein-1c. The aim of the present study was to determine whether ALA prevents hepatic PAI-1 expression and fibrosis through the inhibition of multiple TGF-beta-mediated molecular mediators. We investigated whether ALA inhibited the development of hepatic fibrosis in mice following bile duct ligation (BDL), an established animal model of liver fibrosis. We found that ALA markedly inhibited BDL-induced hepatic fibrosis and PAI-1 expression. We also found that ALA attenuated TGF-beta-stimulated PAI-1 mRNA expression, and inhibited PAI-1 promoter activity in liver cells; this effect was mediated by Smads and the JNK and ERK pathways. The results of the present study indicate that ALA inhibits hepatic PAI-1 expression through inhibition of TGF-beta-mediated molecular mediators, including Smad3, AP1, and Sp1, and prevents the development of BDL-induced hepatic fibrosis. These findings suggest that ALA may have a clinical application in preventing the development and progression of hepatic fibrosis.

http://www.ncbi.nlm.nih.gov/pubmed/18972440

Alpha-lipoic acid decreases hepatic lipogenesis through adenosine monophosphate-activated protein kinase (AMPK)-dependent and AMPK-independent pathways.

http://www.ncbi.nlm.nih.gov/pubmed/18435927

We report here that alpha-lipoic acid (alpha-LA), a naturally-occurring antioxidant, scavenges reactive oxygen species (ROS) followed by an increase in apoptosis of human hepatoma cells. Apoptosis induced by alpha-LA was dependent upon the activation of the caspase cascade and the mitochondrial death pathway. alpha-LA induced increases in caspase-9 and caspase-3 but had no significant effect on caspase-8 activity. Apoptosis induced by alpha-LA was found to be mediated through the tensin homologue deleted on chromosome 10 (PTEN)/Akt pathway. Prior to cell apoptosis, PTEN was activated and its downstream target Akt was inhibited. Our findings indicate that increasing ROS scavenging could be a therapeutic strategy to treat cancer.

[mhudnall]

http://www.ncbi.nlm.nih.gov/pubmed/18062843

Effects of dietary alpha-lipoic acid on hepatic and serum lipid concentrations and the activity and mRNA levels of lipogenic enzymes were examined in rats. Rats were fed experimental diets containing varying amounts of lipoic acid (0, 1, 2.5, 5 g/kg) for 21 d. Lipoic acid profoundly decreased serum and liver concentrations of TAG, and also lowered serum concentrations of phospholipid and NEFA, and the concentration of cholesterol in the liver. A hypoglycaemic effect of this compound was also observed. Lipoic acid dose-dependently decreased the activity and mRNA levels of fatty acid synthase, ATP-citrate lyase, glucose 6-phosphate dehydrogenase, malic enzyme and pyruvate kinase in the liver despite that reductions were considerably attenuated in the NADPH-producing enzymes. This compound also dose-dependently lowered the mRNA levels of spot 14, adiponutrin, stearoyl-CoA desaturase 1, and Delta5- and Delta6-desaturases. In addition, lipoic acid dose-dependently lowered serum concentrations of insulin and leptin, but increased those of adiponectin. Lipoic acid appeared to reduce hepatic lipogenesis and hence decreases serum and liver lipid levels

http://www.ncbi.nlm.nih.gov/pubmed/17639719

The effect of thioctic acid on the glutathione dependent antioxidant system and activities of enzymes, generating NADPH of rats has been investigated in rats under conditions of toxic hepatitis. Injections of thioctic acid to animals with toxic hepatitis caused the decrease of glutathione reductase and peroxidase activities to the normal level. Reduced glutathione content also tended to the control level. Administration of thioctic acid to rats with toxic hepatitis also caused the decrease of NADP-dependent isocitrate dehydrogenase and glucose-6-phosphate dehydrogenase which might be associated with decreasing need of NADPH supply for glutathione dependent antioxidant system. Thus, obtained results have shown that thioctic acid may regulate manifestations of oxidative stress and the state of the glutathione antioxidant system.

http://www.ncbi.nlm.nih.gov/pubmed/17659728

AIM: To compare different preconditioning strategies to protect the liver from ischemia/reperfusion injury focusing on the expression of pro- and anti-apoptotic proteins. Interventions comprised different modes of ischemic preconditioning (IP) as well as pharmacologic pretreatment by alpha-lipoic acid (LA). METHODS: Several groups of rats were compared: sham operated animals, non-pretreated animals (nt), animals receiving IP (10 min of ischemia by clamping of the portal triad and 10 min of reperfusion) prior to sustained ischemia, animals receiving selective ischemic preconditioning (IPsel, 10 min of ischemia by selective clamping of the ischemic lobe and 10 min of reperfusion) prior to sustained ischemia, and animals receiving 500 micromol alpha-LA injected i.v. 15 min prior to the induction of 90 min of selective ischemia. RESULTS: Cellular damage was decreased only in the LA group. TUNEL-positive hepatocytes as well as necrotic hepatocyte injury were also decreased only by LA (19 +/- 2 vs 10 +/- 1, P < 0.05 and 29 +/- 5 vs 12 +/- 1, P < 0.05). Whereas caspase 3- activities in liver tissue were unchanged, caspase 9- activity in liver tissue was decreased only by LA pretreatment (3.1 +/- 0.3 vs 1.8 +/- 0.2, P < 0.05). Survival rate as the endpoint of liver function was increased after IP and LA pretreatment but not after IPsel. Levels of lipid peroxidation (LPO) in liver tissue were decreased in the IP as well as in the LA group compared to the nt group. Determination of pro- and anti-apoptotic proteins showed a shift towards anti-apoptotic proteins by LA. In contrast, both our IP strategies failed to influence apoptotic cell death. CONCLUSION: IP, consisting of 10 min of ischemia and 10 min of reperfusion, protects only partly against ischemia/reperfusion injury of the liver prior to 90 min of selective ischemia. IPsel did not influence ischemic tolerance of the liver. LA improved tolerance to ischemia, possibly by downregulation of pro-apoptotic Bax.

[mhudnall]

If you want more, I can post them tomorrow. The above was the result of a quick search on pubmed, but is in no way exhaustive. You guys could actually do this yourselves if you wanted to.

[scratchinghead]

man, I won't need to suffer through treatment --I'm going to die of a headache trying to read this stuff.

[mhudnall]

Sorry, let me translate. Alpha Lipoic acid protects against (in descending order):

progression of fibrosis

fatty liver (steatosis), which is fat stored inside of liver cells, a condition that greatly contributes to increased liver damage in hepatitis c

liver cancer

again, fatty liver

the depletion of glutathione in the liver, which is a hallmark of the progression of hep c, and which contributes to the levels of oxidative damage and lipid peroxidation in the liver

liver tissue damage due to the lack of blood perfusion, a condition that occurs in cirrhosis

[Trinity4]

As the owner of MedHelp stated regarding the Berkson protocol:   "Buyer Beware"

[Bill1028]

Congradulations, you didn't mention ldn once in all of that.

Seriously, keep it simple and to the point of lala and chronic hcv in humans.

[Willy50]

Bill 1028 wrote;

"Mike, you have been claiming that there is plenty of evidence that ala is beneficial why not share that evidence with us?  Keep it simple, more evidence and less words."  
-----------------------------------------------------------------------------------------------------------

With regard to this comment, isn't the thread about how dangerous the substance is?  Doesn't that put the onus on Copyman, or whomever to provide the studies and data on how dangerous ALA IV therapy actually is?  

Why not simply let people post data on LDN or ALA as it comes up?  
It reminds me of the striving to get the 10 commandments removed from the lawn of the courthouse.  I tend to walk by without noticing.  It's the crowd of protesters I notice; the Christians versus the CLU on the lawn lawn of the courthouse duking it out.  

Is it possible that you are having the unintended effect of creating publicity for the drug or treatment that you seem to oppose?  Maybe if they were ignored they would have about 1/10 (or 1/100thth) of the posts that they commonly receive.  Seems like one of them had about 350 posts.  ; )

Having said that, I enjoy an argument, as long as it doesn't become a brawl.

best,
Willy

[FlGuy]

alpha lipoic acid is the Mixed Martial Arts of Medhelp topics.

[mhudnall]

Could you explain what's not simple about protecting the liver against fibrosis, fatty liver, oxidative damage, glutathione depletion, cancer formation and cirrhotic tissue damage? Is it that you don't understand how that would be beneficial to hep c patients? Maybe if you were more specific about the parts of the studies that you don't understand, I could explain them better.

I don't see how asking a question, but refusing to acknowledge the answer proves your point. It's like when my kid sticks his fingers in his ears and says, "lalalalalalala".

It does end the conversation though, because there is no where else to go in a logic-based system.

[Bali05]

SOC is known to have many serious side effects even permant
and in some cases debilitating ones.Being heavily considering
this treatment I am being warned left and right even by MDs
about taking interferon right now.

I do not understand how anyone can call ALA dangerous in
comparison.

I could make the case that ALA has helped me to get from
a FibroScan F2-F3 result to a FibroScan F1.
That is my clinical experience and other factors may
also play a roll.
Either way I did many ALA IVs and I mean many
and apparently it did not hurt one bit !
Major side effects are better sleep and overall feeling much
better .

I am about to embark on SOC to surpress the virus beyond
detection level.Had a conversation with another Dr. yesterday
again warning me about Interferon and I should only consider
it as a last resort.

My head is about to explode !

Never mind ALA is dangerous , you have got to be kidding me!

[nygirl7]

Had a conversation with another Dr. yesterday
again warning me about Interferon and I should only consider
it as a last resort.  "

It's so strange to me that i live in the greatest metropoliltan area in the world and yet no doctor ever warned me once that interferon could cause such type of problems as you just described. Can it lead to thyroid problems? Check. Can it cause autoimmune problems? Check. Can it cause exploding head syndrome - no.
They did say that it was a proven cure and could lead to me getting rid of HCV for good.  As it has.

Never mind ALA is dangerous , you have got to be kidding me! "

Things that are NOT proven to work are indeed dangerous because people do die - every day - of end stage liver disease while they imagine that they are getting better and then are tested and have advanced in liver damage or HCC. Once your liver explodes it's exploded for good.

I'm not sure why you say that you are going to do SOC when it's quite apparent that it's so evil that you will not. Will you just do the riba part or riba and ALA and hope for the best? That is a serious question - without the interferon it's not a cure at all.

[Trinity4]

Bali:
"I have serious issues with cognitive damage which puts the breaks on
every time I think about it."

SOC is not going to happen anyway you look at it.  We are not the one's encouraging you to treat Bali.  You are one who is continually telling us you are considering treatment and then WHY you are not going to treat.  At this point, I don't understand why you keep putting it out there for open discussion when you dismiss it every time it's discussed.  

I guess it's like having that entourage of doctors, the more opinions the easier it gets to make a decision right?

[FlGuy]

I'm pretty sure WHO does not handle exploding brains messes.  Maybe CDC or FDA, but not WHO.

[FlGuy]

Thanks for that.  I've always enjoyed it.  After I re-read my post it also occurred to me. And there's more to it.....

[Bill1954]

It always makes me smile too, FlGuy. More importantly, Abbott and Costello managed to get through all of that without resorting to posturing and ending up in a p!ssing match… :o).

Bill

[Bali05]

"I'm not sure why you say that you are going to do SOC when it's quite apparent that it's so evil that you will not"

Because I am still hopeful it is not going to be that evil.

Nobody I know of chooses ALA Ivs over SOC.

Most people with hep c  who do ALA IVs have perviously failed SOC.

Should Interferon not work for me I have a protocol setup to help

me while I wait for better meds. That simple.

[Marcia2202]

Ha ha, that was right on the spot!

I love it!

[IAmTheWalrus]

"The FDA does not approve apples either, that does not prove they are unsafe." ...

So, I'll be mainlining apple juice for people with HCV at $1,000 a pop. I was looking for a hobby for retirement anyway! ;-)

Talk about overdosing the rats...

[can-do-man]

Dr. Berkson's assertion there is no cure concerns me greatly.

With that statement does it not concern you that he just might be taking advantage of people who are desperate?

[Trinity4]

"Who's on first, What's on second, I Don't Know's on third."

Is it the bottom of the ninth yet?  

Too much enlightenment will make your head explode or on the other hand is it counter-enlightenment?

[Emily_MHModerator]

Lots of this is being reported as abuse.  Please tone down the jokes, the personal stuff, etc.  

This is the second time we've had to step in on this thread.  We don't want to take it down or close it, so please keep things calm.  Remember that you can discuss and debate without it getting personal.

Thanks,
Emily

[child24angel]

I don't know why you took down my post at all.
Simply kidding around...that is all, nothing more.

[Emily_MHModerator]

It was a matter of context and flow of the conversation.  Without other posts, your post didn't make much sense.

It also contributed to the overall tone, which was troublesome, for lack of a better word.

Emily

[orphanedhawk]

LOL. If WHO did deal with exploding heads, this forum would be kaput.

[Trish77]

"Dr. Berkson's assertion there is no cure concerns me greatly.

With that statement does it not concern you that he just might be taking advantage of people who are desperate? "

Yes.  I am concerned about that quite a bit.  I have stated that previously but you're asking and I appreciate that you're not simply attacking me as a Berkson follower (which is far from the truth) but probing and dialoguing on the matter.  My concern is how he presents his information.  While I don't have much problem with ALA separate from Berkson at this point and am at least interested in investigating that, I'm concerned how Berkson presents treatment for HCV itself, if he presents it as if there's no difference between SOC - interferon/ribavirin and IV ALA, as in neither one really deliver a cure.   Whether he does this or not, I don't know but it concerns me because I think it's possible.  

There are definitely those that do not believe in the concept of total cure. Whether Berkson is one of those or a charlatan who uses that to get patients, I really don't know and that concerns me also. Quite a bit, actually.  Particularly when I've noticed some who have read his literature questioning whether SVR is actually durable.

Having said that, it doesn't have much to do with ALA itself.  I also know doctors who treat people with interferon and ribavirin and the misinformation they spread either purposely, negiligently or sincerely concerns me greatly also - and the lives they endanger as a result concerns me even more.  That doesn't mean that the drugs themselves are the problem though, does it.  

So...not...not so crazy about my perception of Berkson.  Not indicting him but have big concerns that I wish could be addressed somehow.

Very interested to know more about ALA however.  Particularly from those with HCV who have decided to add it to their regimen whether in pill form or otherwise.  Too bad Berkson seems to enter into every discussion on ALA.  It seems people are far too willing to throw out the one with the other.   If we did that with interferon and ribavirin because we encounter a doctor who's approach to treatment is dangerous, then we'd be missing out on the one and only known cure, wouldn't we.

Regards, Can-do-man.

Trish

[tashka]

Statement that there is no cure is, of course, wrong. And I agree with this. But do you know how many MDs, who are not hepatologists, think the same way? Plenty of regular, licensed medical doctors think that there is no cure, and tell this to their patients. My OBGYN recently told me this, and I had to educate him. Very good OBGYN, by the way, not a quack, but uninformed on this subject.

I read on several medical web-sites, geared towards patients, that there is no cure for hepatitis C. They talk about treatment and, maybe, "remission", but state that hepatitis C is incurable disease. It sounds very bad, discouraging, and is wrong.

Many doctors are just uninformed, because hepatitis C is not on their radar. It is not their specialty. Maybe Dr Berkson is also not adequately informed about the cure, or his information is outdated. His specialty is interative medicine. At least, he doesn't claim that he can cure HCV.

[Trish77]

Tashka, the difference between Dr. Berkson and your ob-gyn is that Dr. Berkson directly treats persons FOR their HCV and your ob-gyn does not.  They are part of his practice and he has put a study on PubMed about his triple-antioxidant therapy and his three HCV patients as the participants in his study.  If HCV is not on Dr. Berkson's radar and he is inadequately informed, his patients are in a peck of trouble when he's using IV ALA treatment FOR persons with HCV.  I don't think the issue is that he's uninformed.  The question is whether he's adequately informing his patients or if he's misleading them, whether intentionally or unintentionally.  If he was an OB-GYN it would be less of a concern.  When he's treating people FOR their HCV, it becomes a greater concern what information he's presenting to them and how, the same as it is for a gastroenterologist who treats someone for their HCV and isn't giving them the correct information yet treating them with INF/Riba.  

I do agree with you that Dr. Berkson does not claim he can cure Hep C.  That is in his favour and different than the snake oil salesmen who claim their potions are a cure.  

I did read his one interview verbatim and there wasn't anything in that interview that concerned me.  What concerned me was his dialogue with me in an email and how he presents the "no cure" to his patients and if they won't go any further than Dr. Berkson then they'll believe that and may not seek out treatment or be aware that it CAN cure their HCV.  That concerns me and I would think rightly so.

[Trish77]

I hope we don't go down the Berkson path too far.  I'd rather be discussing ALA and examining whether it has any potential or not and why...and why those who currently take it have chosen to.  

[merryBe]

I think you have to study the virus a little more before jumping to conclusions.
The virus is highly virulent, people that reach no detectable virus in tests that detect one part in a million and that remain undetectable for a year are considered cures...people who relapse do so in a very few weeks, and end up back in the millions per ml. in no time...

so when it comes to whom to believe, a doctor stating there is no cure would be suspect in my view, He may have stumbled onto something that can be repairative, true enough, but to state there is no cure would seem like a way to suck gullible people in.

If there were no cure, then someone please explain to me how come there are so many people in here that ARE  SVR, and have been for years, and are trying to help you?  How could they not be detectable for umpteen years when this virus is so virulent unless the virus was eradicated?

[Bali05]

1) I do not believe in Berkson or who ever instead of  SOC.

2) I am still not 100% sure if ALA IVs are working in helping regenerate liver cells.
  
3) Contrary to many opinions on this forum , I am not a gullible follower the
    complete opposite is the case. I have done the Berkson ALA Iv protocol
    extensively followed by many bloodtests and scans to try determine efficacy.
    Like my own personal mini clinical trial if you will.
    I also challenged Dr. Berkson when the results did not proof to be what I
    was looking for.

4) I am looking for ANYTHING that could help my state of health before,during or
    after tx. and what could halt or slowndown progression.

Anyone who is interested in ALA IVs should look at the Berkson protocol since
he was appointed in the 70s by the FDA as th primary investigator on the subject.
No one has as much clinical experience with ALA as he does.

I am glad to share my experience and answer straight forward questions
to anyone who is interested. But by no means am I an advocate,
follower , promoter ect......

In my last meeting with Dr. B. after getting poor FibroSure results I decided it
is time to add SOC to my Alinia protocol.
I challenged him in person saying if my liver was truly regenarating the FibroSure
should have been a lot better. He said he did not believe in the test.
OK , so I told him without any proof I have to move on and I challenged his
believe that INF was not working by mentioning the fact that many do SVR.
At the end of that session he said , well maybe because he sees so many failures
he comes to that conclusion and maybe I will be one of the lucky ones.
So he wished me luck and that was our last meeting.

I returned to NY preparing for SOC. Which after all my efforts is a mental 180.
So now I am getting into what to take during tx and what not to take.
Come across CS`s protocol of predosing Rib, SAMEe+TMG during tx as interferon
sensitizers , tapering of at the end of tx , learnong about IR and test it
as well as doing another FibroScan for baseline stats since we have one now
in the city.
I thought I did not hear right when Dr. Park a colleague of Dr. Douglas Dietrich
told me I was F1. Best result to date ! I immediately repeated it one week later
different Dr. same machine rsult again F1. Recommendation from both:
time to wait , biopsy unneccessary.

Now at this point my anxiety level has caused an ALT flare up of 71 !!
5 weeks ago my ALT was 30 ! I am also feeling more inflammation
around my liver because of that.

I think I am as ready as I will ever get at this point.
Contrary to many on this forum I never ever completely ruled out SOC as an option.

As you know I am geno4 so good data and trial options are hard to come by.

I am not willing to wait any longer for some hopeful drug or INF free tx which

still is many years away , when I might be a good responder with little to moderate

sx.

So here is the hopefully final  plan my man:

- predose Riba 14days , already on Alinia for quite a while , also start SAMe
  and some other tx proven supplements. Ditch all other herbs ect...
- start injecting Peg 2 wk  1st PCR
- 2 more week PCR  (4wk RVR mark)
- 8 wk PCR
- 12wk PCR  ( decision time of wether to continue or restart with Telaprevir 2011)

I have boosted my Vit D to 74.5 , I am not insulin resistant, perfect BMI ,
geno 4 with Alinia , hopefully with minimal fibrosis
all good predictors that give me a green light.

Why wait when things can get worse. Who is to say I am not going to have an allergy
to one of the PIs ect.....

That simple !

[portann]

Well, I don't often tune into this channel but I have a quick question and quick observation.

I was in a pharmacy the other day in search of CoenzymeQ10, which I'm thinking of adding to my nearly non-existent vitamin regime. ( I only take liquid Viamin D3, thanks to GreatBird's suggestion.)

And there, on the shelf, alongside the Vitamin C's of the world, stood ALA!  I was shocked to see it because I'd think the pharmacy would have to hire armed guards to secure it from the hound of the Baskervilles.

Anyway, I asked the pharmacist (who looked quite normal, not like a fanatic at all but appearances are deceiving) and he said ALA was inferior to (get this!) RLA!

So what is RLA or more specifically, R(+)-Lipoic Acid (active mitochondrial enantiomer)? Has anyone here ever mentioned it?

And to Bali: It's not my place to influence your decision but if I were in your position, I would wait for the PI's to go mainstream, if they do. My hope is that a G-1 (and likely G-4, like you) would only have to treat twenty-four weeks with that scenario.


Susan

[Bali05]

Which PI should I be waiting for that shows improved SVR for geno 4 ?

Name one please !

[Trish77]

Considering that most of the clinical trials are done on Genotype 1 as being the hardest to treat and then to a lesser extent on Genotype 2-3 and hardly on Genotype 4, probably because Genotype 4's are in other parts of the world where drug companies have less access to test subjects and a much smaller market to appeal to, being largely in the Middle East and Africa....

... it would be near impossible to *accurately* answer that question, don't you think?  

Genotype 2 and 3's were long considered to be the same when it came to treatment responses and now it's become increasingly clear that Genotype 3's can be somewhat tougher to treat than Geno 2's but still not as hard to treat as Genotype 1's.  

Therefore, Genotype 2 and 3 persons seem to be having to hedge their bets on what works for Genotype 1's when it comes to PI's and probably did likewise when the combination therapy of interferon and ribavirin came on the scene as well.

This is old...and I'm sure you're familiar with it ..
http://gut.bmj.com/content/54/6/858.abstract

When this indicates a response rate of 66% for 36 weeks of treatment and 69% for 48 weeks of treatment - far superior to response rates for Genotype 1's on the same treatment .. I would say that .. for the most part .. you're likely as good as it gets with going on what works for Genotype 1's.  Particularly if that study is reasonably reflective on what is known of treatment responses for Genotype 4's.  I don't think any doctor treating a person with Genotype 4 is going to shy away from trying a PI on a G4 simply because there have been no direct trials done on G4.  Rather, the consideration will be to take into account ALL of the factors that might come into play for that particular G4 person as treatment needs to be and should be individually determined based on their own biological circumstances.

Do you think you can look to whatever PI's are found to be effective for Genotype 1's?  If not .. why don't you think so?  Sincere question and interested in your answer.

Trish

[FlGuy]

Why consult with doctors at all?

"Recommendation from both: time to wait , biopsy unneccessary. "

I don't get this:

"Now at this point my anxiety level has caused an ALT flare up of 71".

[Trish77]

I missed your TX plan...just read it.  Seems reasonable.  I would pre-dose with Riba too if I was doing a custom TX and I would also add Alinia to the mix.  I was planning on doing both of those when I was doing my own prep and then the trial came up.  I was also planning on going to the U.S. for the PCR's I wouldn't be able to get here in Canada.  They wouldn't have done a baseline viral load for example, since I'd already had a viral load PCR in the current past year.  I would have wanted that.

Anyway...plan sounds reasonable.  The one thing you might want to consider adding is a thyroid antibody test and depending on that, keep a good eye on that throughout treatment.  

Regardless of PI's, I was so mentally ready for treatment, I don't think I could have waited any longer.  I just really needed to get this done and I was F1 as well.  With the benefit of hindsight, I would still have done the same thing on SOC rather than clinical trial as it was simply my time, with all my life factors taken into consideration.  It was going ahead regardless and I only found out about the trial when I showed up for my first treatment planning appointment and so it went.

Whatever you decide ... I wish you "a good ride" and success.

Trish

[Bali05]

"... it would be near impossible to *accurately* answer that question, don't you think? "

Exactly , so am I to wait for a near impossible to "accurately" answer question ?

Other than Telaprevir next year everything is at least a few years of.

By waiting I chance

- to become  insulin resistant a major factor for geno 4
- iron levels to go up
- viral load to go up
- fibrosis to progress
- other health issues connected to hep C to pop up


Alinia+Riba predosing + low viral load gives me a good chance for RVR.

or wait to maybe later find out that I get this incredible rash from Telaprevir

that makes me stop tx ?

"Do you think you can look to whatever PI's are found to be effective for Genotype 1's?  If not .. why don't you think so?  Sincere question and interested in your answer."

Just look at Geno 3 as an example , apparently notgood for Telaprevir.

Geno 4 is closer to geno 1 so i expect Telaprevir to work to a degree but not
as much as Geno1. See study C210. Invitro Tela show GT4 activity so  there is
hope but why wait right now ?

Does Alinia work as well for Geno 1 as it does for Geno 4 ?

Right now I have a lot of good predictors which I might loose by waiting for an
unpredictable answer.

Besides I like the idea of going into tx with other options in the future should the

first time not be the charm. I might just be a good responder who knows but

I will find out very quickly and if not I will stop and go for Tela next year.

In terms of trials , well  there wouldbe the  hopefor R7128 phase3. But is that

going to include geno 4 ? Phase 2 was but that does not garantee phase 3 will.

Plus I might get an arm that is unfavorable ect......

Do I want to wait for all those uncertainties and chance my health deteriorating ?

[Bali05]

did all baseline bloods incl. PCR  and TSH thyroid 1.54 platelets 235

I am hoping to have "The Dream Team" over at Dr. Ira Jacobson`s , time will tell.

How fast does liver inflammation go down with tx ?

[can-do-man]

Other than Telaprevir next year everything is at least a few years of.

Ever heard of boceprevir? Might also want to look into that........ Good luck

Can

[Trish77]

Well, not everybody is the same.  So using only myself, I was F1 when I started treatment.  At the SVR appointment six months post EOT, my doctor did a fibroscan and found no detectable liver damage at all and...as I have said here before .. told me with great flourish to get out of his office and never come back .. as I have no reason for follow up being all clear.  Some kinda wonderful, eh?  I hope the same for you.

Trish

[Bali05]

lots of love
getting of subject now

Anyone with questions about ALA  ?

to Can Do :

heard about boce but nothing that says SVR to geno 4

[merryBe]

wow, didn't know all that...that's great news...

I mean, the sign of hope for all of us is the ability to rethink things....when plan A fails, going to plan B is the true sign of rational thought.

I'm impressed that you challenged him...and yes he probably does ee a lot of failures...but he is a doctor..he has access to the stats, and the stats tell him that 50% do SVR...so saying most do not is not accurate..he has to know that...in fact 2 genotypes have cure rates of 80 and 90% respectively,,,that's nothing to sneeze at.

anyway, glad to see you are reconsidering.

I like your idea about adding the alinia and predosing the riba...
alinia had the most profound effect on type 4's so thats a no brainer...the riba is as well...though it could impede future studies or trial you might want to enter.

In the trials they look primarily for those willing to stick entirely to protocol...they are looking for what their drug will do under exact circumstances, and so don't appreciate any tweaking no matter how rational...as long as you are fine with trial exclusions down the road,,,

one thing, if I was F1, I think the PI might be worth the wait.
currently the drugs used do not interfere sufficiently with the transcription of vial replication which is why the PI type drugs are so hopeful, is because they do more in this areana and raise SVR from a dismal 50% for type 1's to a much more hopeful 75-80%.
Alinia also seems to interrupt the transcription phase, although it doesn't have quite as impressive of results.

In any case, I think you are on the right track with further consideration of your options...and just know we are in your corner and will be here for encouragement whenever you need it, whatever you decide.

I will say, I had to think long and hard about all the lipids since the virons also thrive on lipids...meaning they help the liver repair and get healthy, but the verdict is out on whether they help or hurt viral survival.
I questioned HR about this when he was here discussing the PCC research....and pointed out that ala, pcc, or any omega oils had that potential, and he was in agreement that one could not be certain as to the help or hurt therefore.
The operative thing for me, is I kept fats to a minimum while treating...but now that I'm done, and have relasped, there's good reason to protect the liver with omega's until I do get the right chemo to kill the buggers....and since the oils help limit the imflammatory damage, they just made sense even if VL did go up...as it happens, inflammation has gone down...so for now, things seem well in hand.
However I'm anxious to retreat as soon as better drugs are available.

Bottom line is to try to beat this thing before it beats us.
If you are feeling inflammation I'd wonder if your fibroscan was accurate. I didn't start to feel my hcv until stage 3/4 when the swelling began pressing on my rib cage....there are no nerves in the liver, so it's doubtful that stage 1 people would feel any pain.

mb

[Bali05]

-Tele & Boce work for geno1,2  not 3,4
-Other PIs still phase  1 or 2 and  few years of

At this point what`s a geno 4 to wait for and why ?

Please tell me ?

With low viral load I either respond or not . If not than I will have

to wait.

You might wait for a better drug while other predictors get worse.

- did last Fibrocan twice with two differnt Dr.s same result  F1
- Did several ultrasounds recently liver normal size not enlarged
  no abnormalities
- I believe you can feel inflammation wihout having to have fibrotic damage
- I also believe that despite liver having no nerves the sorounding tissue
  can get effected.

Trials:
- few choices include geno 4
- you can end up in unfavorable arm and become resistant to that class drug

again not sure what exactly I would be waiting for  ?

[IAmTheWalrus]

For what it is worth, I noticed an article about G4 treatment indicating improved results with SOC if nitazoxinide is added. I don't know anythig about this, but the article reports improved SVR results (79% vs. 50%). It looks like this study was specifically for G4 patients, though mostly were IFN naive.

http://www.hepatitis-central.com/mt/archives/2008/04/nitazoxanide_im.html

Brent

[Bali05]

Ribavirin Loading Before Starting Pegylated Interferon Therapy: Effect on RVR and EVR.

T. Hassanein, F. Barakat, D.L. Oliver, L. Petcharaporn, N. Karlen, K. Hall, L.M. Richards, E. Alpert, , University of California, San Diego, San Diego, CA; R.S. Pozza, K. Biando, , Southern California Liver Centers, Orange Country, CA;

Background and Aims:
Treatment of HCV infection requires the combination of Interferon and Ribavirin. Ribavirin at adequate dosing is essential during the course of therapy to decrease relapse rate and improve sustained viral response (SVR). The role of ribavirin in the early phase of HCV therapy and its impact on rapid viral response (RVR) is not well defined. RVR is considered the best indicator of SVR irrespective of viral and host factors. The aim of our study was to explore the effect of weight based ribavirin loading before starting pegylated interferon therapy on RVR and patient tolerance.

Methods:
52 patients with HCV (54% Genotype 1, 34% Genotype 2/3, 11% Genotype 4/6) were included in the study. The mean age was 55 years, weight was 179 pounds and HCV RNA was 800,000 IU/mL. 26 patients were treated with pegylated interferon and weight based ribavirin (Group A) and 26 patients were treated with weight based ribavirin for 4-6 weeks before starting pegylated interferon therapy (Group B). Both groups were matched for viral load, age, weight, genotype and hemoglobin concentration prior to treatment.

Results:
At week 4 RVR was documented in 43% versus 55% in groups A and B respectively (RVR G1 36% vs 23%, G2,3 50% vs 100%, G4,6 0% vs 100%). There was no difference in ALT improvement or Hemoglobin changes between the two groups. At week 12 in genotype 1, 47% of group A patients were negative vs 50% in group B, while genotype 4/6 viral negativity was 33% vs 100%, respectively and for genotype 2/3 100% were negative in both groups.

Conclusions:
Ribavirin loading before starting Pegylated-interferon therapy
1) did not impact RVR in genotype 1 but has a positive effect on genotype non-1;
2) was well tolerated;
3) had no significant impact on hemoglobin concentration at week 4 or 12 of therapy.

In summary, ribavirin loading might impact RVR rates in non-genotype one patients.

[Bali05]

thank you for thinking of me !.

I am on Nitazoxanide for several months and very well aware of the studies by Romark

in Egypt.Currently predosing Rib in addition to that.

If you come across any other news on geno 4 please let know.

Bali

[Magnum]

Where's my post? Has it been removed? Posted Tue, the 6th...

What's with all the stars next to the nemas?

thanks

[merryBe]

yes, I think your rational would make sense if no PI's is proving as effective in type 4's.

however, there have been a few studies suggesting otherwise, here's one.

http://www.medhelp.org/posts/Hepatitis-C/EASL-2009-Telaprevir-G-4-Results/show/934925

it's rather baffling these genotypes...like the predose study in this thread...there you see
that a 40-50% increase in RVR in 2 geno's, same applies in reverse...but usually it's type 1 that is considered the hardest to treat.

please note the geno 4's in the study on Willy's thread had a 13% higher RVR compared to 0% in the other arms, (A and C). Not sure what the final outcome was though...they left that info out for some reason. their conclusion did state:

Conclusions:  TVR in combination with Peg-IFN and RBV had greater activity against HCV genotype 4 than Peg-IFN and RBV alone or TVR monotherapy. The potential role of TVR in combination with Peg-IFN and RBV in the treatment of HCV genotype 4-infected patients remains under investigation.

I'm not as familiar with your geno 4 research, so could you post the studies that show no improvements with PI's?  Not that I doubt you, but just so we'll know.
If there's only slight improvement, then I could see not wanting to wait for sure.
In geno 1's it's a 25-30% improvement in overall odds, so it makes sense for most American's to wait and include the new PI's unless they are late stage.

[merryBe]

the above remarks were for you, sorry....also, please note the study you posted only had 5 or 6 geno 4's in it....not sure this is sufficient to reach any conclusions. too small a sample IMHO.

[nygirl7]

Anyway, I asked the pharmacist (who looked quite normal, not like a fanatic at all but appearances are deceiving) and he said ALA was inferior to (get this!) RLA! "

I think this got buried in the thread somehow and it's quite curious.....does anyone have any information on this?  I'm wondering why if it's more effective people are still taking the ALA instead.

Trying to google it all and it makes no sense to me but apparently others have asked the same question judging by some posts in archives from other forums:

I've heard that RLA is a "purer" form of ALA and thus better, but I
know that most people use ALA. Is there some drawback to RLA? Would the dosing be the same as ALA?"

They both pop up on anabolic and body building websites all over the web (supplement selling sites).

[Rockerforlife]

What you need to know when buying R-Lipoic Acid..."the sticky truth"


R-Lipoic Acid (RLA) is one of the most important and exciting new nutraceutical compounds to hit the market. It is a powerful antioxidant, a critical co-factor in ATP production and has been shown to be more effective by a factor of 10 over the commercially available Alpha Lipoic Acid in several bio-tests. This implies that S-LA found in Alpha Lipoic Acid is interfering with the body's utilization of the natural R form. To learn more about what exactly is the difference between SLA and RLA click HERE

R-Lipoic Acid naturally polymerizes into a glue-like substance.

RLA is a highly unstable compound that easily breaks down into a sticky rubber or glue-like substance if it is not prepared, stored and processed correctly. Even under the best conditions, regular RLA is extremely unstable. Exposure to air, light, moisture and temperatures slightly above ambient drastically reduces shelf life and increases the formation of this unwanted bi-product that may impair its intended benefit.

http://hu-max.com/sticky1.html

[Rockerforlife]

Because of the complexity of the production, I am
now convinced that high purity and quality RLA is unlikely to
be available soon in product forms as inexpensive as are
regular vitamins. At Labochim's required selling price (even
in quantity), RLA could likely not be sold profitably in
capsule form for less than $3.00 per gram retail. Since a
reasonable capsule size would be 100 mg (3 or more per day),
this translates to a daily price of just under $1.00 which
only the most serious life extensionists or those with major
health problems are likely to embrace.




http://forum.lowcarber.org/archive/index.php/t-73070.html

[nygirl7]

You would think however if it was so beneficial that professionals would have access to it because they would know how to handle it.  It's a shame if it's really so potent and worthwhile that they can't do something to make it viable.   I mean 10 times is a LOT.  Maybe it's too much for the body - even as a supplement just meant for healing like ALA.....maybe they use the weak version because it is tolerated better, even via IV?  If it's so useful to help IR it sounds worth the work to figure it out.  How much that would help people with treatment rates!  But it sounds like taking vitamin C for cancer rather than chemo still.  

Its too bad.

[Bali05]

it was on janice & friends and i read it elsewhere as well.
i am familiar with the c210 study you posted.

[Bali05]

"....also, please note the study you posted only had 5 or 6 geno 4's in it....not sure this is sufficient to reach any conclusions. too small a sample IMHO."

The study you posted C210 (Willy) only enrolled 24 people and out of those only
25% were caucasian = 6 people !
It does give hope but it is not strong enough to hold of tx to wait which means risking
your overall predictors (viral load, staging , insulin resistance ect....) getting worse.

Predosing Riba has no apparent downside. If your Hgb drops it will do so either way.
This study shows efficacy and there is another one that showed improved response
in geno1 previous non responders

The best proven SVR results
for geno 4 remain tx with Nitazoxanide and yes those were all Egyptians so who
knows if ethnicity will be in my favor are work against me.

Predose Rib , Alinia onborad , low VL , optimum VitD level, no insulin resistance,
perfect BMI , Normal Iron level  plus a few tweaking supplements are hopefully
going to do the trick. If not there will be a rematch with whatever PI looks good
when the time comes.


ALA is best as Thiotic Acid from European Source (ideally Germany by Ratiopharm)
That`s what the FDA appointed primary investigator says !
I use Metablolic Maintance ALA 300mg

No RLA.

[inteluck]

altho we are at increased risk of HCC u exaggerate the increase. About 1% of hep c positive people progress to cirrhosis per year, and about 3-5 percent of these people develop HCC per year. Considering the lifestyle risks inherent to the large percentage of hep c positive people who are IVDU's, many of whom also smoke, I have to assume many of the HCC cases are concentrated in this population. For those of us who do our research, live carefully and mindfully of our health, and implement all the possible strategies to protect our livers, our risk of developing HCC before highly effective and safe cures are available is low.

[merryBe]

yes, I stand corrected....I know the number applies only to those who continue to carry the virus and advance in stage/grade....that should be obvious, but since it wasn't I see now I should have stated the obvious.

naturally those who cleared the virus, or treated early and cleared, or who are in early stage disease are not at the same risk level...nevertheless I inadvertantly ommitted which group I was referring....an overiste...me bad.

nevertheless the fact remains that high oxidative stress=HCC=death, and hcv patients need to know that's what awaits them unless they take some measures to slow the oxidative and fibrotic progressions...I believe the rate of HCC in stage 3/4 is 3-5% per annum....which is alarming in that I was told "oh you could live another 20 years"
well yes I could, but not if I get HCC..in that case 20 weeks would be more like it!!

I was also alarmed that my doctors, and many doctors if I am to beleive the emails I get do not warn patients AT ALL about their iron levels....
once I learned in here iron mattered I lowered my iron by almost 300 pts....
but I was the only patient at my clinic doing so....
nevertheless, it was not my intention to overstate the risks.
apologies to everyone.
mb

[Gerund]

Taking large doses of alpha lipoic acid is dangerous. This is according to Dr. Burt Berkson. I am a former health writer. He told me during an interview that he tested alpha lipoic acid intravenously on mice and found that the equivalent of more than 600 mg a day in humans was harmful. He said the effects were not pretty, and provided specifics of the cellular damage.

I pointed out that most people use alpha lipoic acid orally. He replied that this would concentrate it in the liver even more than intravenous treatment. So he strongly advises against taking more than 600 mg a day orally.

I am just a bit skeptical. I think it would be more accurate to avoid taking a single dose larger than 600 mg; indeed, I would stick to 300 mg or less per dose. You will notice that you don't see capsules larger than 600 mg, anyway.

I take alpha lipoic acid for general health; I do not have hepatitis. I tried to reduce my dose by opening the capsule and adding it to some yogurt. This was enlightening. Lipoic acid has a surprisingly strong effect on the tongue and mouth tissues, a burning sensation. If Berkson is correct about the risks of high concentrations on cells, then it would be worthwhile to study its effects on the digestive tract.

Bottom line: More is not better with alpha lipoic acid. If possible, go with three 200 mg doses a day, tops.  You want to repair damage, not cause damage.

[Magnum]

For what it's worth, I take 100mg capsules three times a week. I ran this by both my Gastro and Hepatologist (Robert Gish). Neither mentioned any danger to the liver...

Magnum

[Cory255]

I take 100 mg Alpha Lipoic Acid vcaps, it contains 250 mg vitamin c (ascorbic acid), and 30 iu vitamin e (d-alpha Tocopheryl Succinate)........

[Bali05]

i don`t think you got your facts straight. i personally visited Dr. Berkson many times
and spoke to a lot of his patients.
he routinely administers iv`s 400mg in the am and another 600mg in the pm that`s 1g
per day . most of his patients do one or two week sessions like that.

[drdigger]

I will speak to Dr. Berksons ALA IV protocal.
I have been a patient and travel his clinic every 90 days, I have also completed the Interferon/Riba treatment through the VA. Seventy Six (76) weeks worth. End result, No SVR. And 76 weeks of the most miserable weeks of my life. Parting shot from the VA, we'll try and make you as  comfortable as possible for as long as possible. Translation:  Take the Morphine and we will come and get you before you die!!
Massive amounts of research and soul searching later I make an appointment with Dr. Berkson and travel to Las Cruces and meet the Man and begin a commitment to his treatment. 9 1/2 months later, Diabetes is gone(Va Agrees) signs and Indications of Cihrosis absent, Cirhrosis is gone(VA also Agrees).
Choice of treatment is a NO Brainer.
Dr. Berkson is the real thing, Double MD and PHd in Microcellular Biology. His Staff is TOP NOTCH also.
Thats how it went and is going for me.

[penn1023]

Can you tell us the dose of the IV's and if you are on naltrexone? I have an appt with Berkson in January.

[elpasolady]

This thread was started in March of 2010.  Lots of new info can emerge between then and now. Nonetheless, no matter where you stand on ALA's alleged benefits, no one can deny the improvements many say they have attained through this therapy.  In all due respect, nygirl, I do not believe this is a dead and buried subject.  It is worth it to talk about so that people feel there are real options for THEM.  ( I just found out about Berkson last night on this forum and I only live about 40  miles from him)  I am scheduled to start tx in a few weeks.  I already have the drugs in my home for the triple therapy.  I would be lying if I told you all that I did not consider changing my mind about tx and seeing if he can help me.

HOWEVER, and to me, this is the most important thing about this whole discussion.  Based on all that I have read on this thread this is what one has to consider...

Berkson ( or ALA) does NOT claim to cure.  It appears ( it only appears) that these IV's and LDN's  he prescribes can possibly keep HCV at bay, where one can have this virus and not suffer severe liver damage.  Obviously, this is a lifetime regimen ( or at least that is what I have surmised)
SOC , now the triple drug therapy, can cure if we are one of the lucky ones.  We may go thru hell getting there, and possible thereafter, but HCV can be gone forever.

People with HCV who do not show much, if any, elevated liver enzymes in their blood work, or dont' have high VL, or show no fibrosis yet, or who have not had HCV very long,  may want to try the Berkson,ALA way, while they wait for better tx options. Buy a little time.  
I was one ( and basically still am) of those people and I sure wish i would have known about him when I first learned I had this virus.  I don't believe for a minute that what he does makes any of this any worse.
For me, now, as much as I do not want to go through what those of you that are now being treated and have been treated go through.....I really would like to get rid of this, once and for all, so i will go through the INF/Riba/Incivek tx.
If I don't become SVR after this tx, you better believer I will be in Berkson's office, just as soon as possible.
So... in conclusion. knowledge is power.  We all make our individual choices, but we need to know what's out there in order to make them. We also need to very diligent in our research, make no mistake.
  
This is not a dead conversation at all, IMHO.
Best wishes to everyone!

[Emily_MHModerator]

Please disagree respectfully.  There's no reason for anyone to get insulting.  

Thanks,
Emily

[nygirl7]

Em didn't MH vette this out and say "Buyer Beware".....so that's not really being insulting it's just trying to tell new people that have not read this 100x already that they should not automatically believe things just because they read them on the internet.

"It appears ( it only appears) that these IV's and LDN's  he prescribes can possibly keep HCV at bay, where one can have this virus and not suffer severe liver damage. "

And where is that study data published - I think we've asked that respectfully many times before and never gotten an answer.  If this were true every single one of us stage 3 and over would have taken this stuff - heck even stage 1 then we'd never ever have to do treatment........that would be awesome wouldn't it?

[stef2011]

just to compare how ridiculous this study can be, 16liters of water in a day can kill.....too bad drinking too much water really killed a man in 2007.
dont drink water please it is dangerous....

http://www.corriere.it/salute/11_luglio_19/aquaholica-inghilterra-sedici-litri-quotidiani_2882e8ea-b206-11e0-962d-4929506ed0a9.shtml

inside the article....
It is not the first case of "water intoxication" or hyponatremia: an athlete who in 2007 took part in the London Marathon has had cerebral complications caused by excessive intake of water and died.

[elpasolady]

Before I say anything else...I just want to remind you that for those of us that are new to this site, this is not old news to us. You may have been down this road 100's of times,and formed your opinions. Now it is time for us to do the same. I am not believing what I read on the internet, just the people that have been Dr B's patients, AND what I have learned about ALA before I ever knew Dr B existed and treated in this manner. For that reason, I find this all very interesting.
I would like to clarify my comment about "it appears that these methods used by Dr. B can  help keep HCV at bay" is strictly based on personal testimonies.  Of course we need to take them with a grain of salt. I would like to know who was treated for HCV and did not respond in any way.
However, I happen to believe the recent post of drdigger above.  I see no reason why he would flat out lie about his results with this Dr. B.  It defies logic. He travels every 90 days and stays for 2 weeks for the IV therapy.  Look at his results.

My intention here is not to start an argument or to raise some feathers. I don't like arguments. I only believe that we should be open minded.  It's no secret that western doctors are not real into alternative or CAM medicine.  However, it seems more and more that some of these methods , in many areas of medicine, are proving to be effective.  There is a time and a place for both types of medicine.

To nygirl....I totally understand your skeptisism and your statement is not taken lightly.
You said.....  
If this were true every single one of us stage 3 and over would have taken this stuff - heck even stage 1 then we'd never ever have to do treatment........that would be awesome wouldn't it?

Yes, it would be awesome if we never had to treat and it would be awesome if everyone st 3 and over could get better.  But, isn't that what is exactly happening, for some people? Re-read drdigger's  post.  Again, why would he lie about this?  Ask him to tell you more about it, which is what i have done.  We all need to educate ourselves and that is what i am trying to do.
What about all the pubmed articles that mhudnall  posted above on March 31 2010 at 12:26am that validated the positive effects of ALA on Hep C?  Are we supposed to simply disregard all of those as bogus?  Just questions that I contemplate as I try educate myself.
Don't get me wrong...my mind is not made up and  my research is just starting.  If, down the road, I find bad information about any of this, i will share that too.

Considering the success his patients have had however, i want to throw a question out there....What would you have to loose, if you were to try it?  (take the money out of it for now, because I really don't know what the charges are.  I was told that he takes insurance and medicare)  How would you ever know how it would help you if you never tried it?  Which leads to my whole point about options and being somewhat open minded, especially when SOC fails.
I don't see this as an either/or situation. I am even wondering if the two protocols could be combined together for an even better SVR rate?  Hopefully more studies will be done on all of this, for all of our benefits!
Peace,
Debbie

[Emily_MHModerator]

Hi -

Yes, it's buyer beware, but we advise that of all our communities, in a way.  None of our member communities have an expert posting in it, and we suggest that all members contact their doctors before undertaking any treatment regimen for anything.  Each person has a different medical history, and that needs to be taken into context.

That said, let's remember that we are a medical info and support site, and making sarcastic comments that insult someone else's beliefs, experiences, or curiosity about a treatment plan (or anything, for that matter) is not supportive.  It's fair to show the good, bad and ugly about a treatment, but it isn't ever appropriate to get sarcastic and insulting.

Emily

[Boobert]

Amen Emily

[copyman]

As for the ALA treatment I have commented enough on this OLD news. For the life of me I don't understand why someone would want to do ALA IV treatments when new drugs just came out that offers a 70%+ cure rate.

Wish you and anyone else who feels desperate enough to try this the best.

Good luck.

[bodyhealer]

     ALA is not patentable and therefore the pharmiceutical companies hate it.  It is also cheap another reason they hate it.  Personally if the FDA does not have much good to say about it, all the better.  The FDA has approved  and continues to approve drugs that are killing us every day.  I have had wonderful success with ALA IV treatment and have talked to many others who have as well.  You think it is taking advantage of people and costing them thousands.  It absolutely pales by comparison to radiation and chemotherapy which has never been double blind tested and is approved by the FDA and coincidentally is big pharmaceutical's biggest money maker.

     Dr. Berkson has been doing this for years with plenty of success.  Expand your beliefs beyond those of the drug companies and the FDA and do some investigation yourself, I did and I am so happy I decided to have Dr. Berkson treat me.  By the way one ALA IV costs $125.00 hardly what you would call a ripoff.  Go to your Doctor and have him prescribe you some extremely overpriced drugs and enjoy the side effects, all the while never being cured.  The only thing that can heal you is your body itself, ALA aids the body in healing itself, synthetic drugs can't do that.  Ya, it's that simple!  And the Insurance companies, well they would be very wise to start approving some of these alternative therapies like ALA and LDN, they would save enormous amounts of money.  Between the FDA, USDA and Insurance companies there is little question as to why everyone is sick and health care costs are out of control.  Besides allowing our food supply to become so toxic and presribing drugs like candy is it really any wonder cancer, heart disease, obesity and any number of autoimmune disease have exploded in our so called modern world.

Dr. Berkson is a PHD and an MD, his  knowledge far exceeds that of most Doctors.  He should be praised for thinking outside the box and helping so many people for decades.  We need more like him!

[merryBe]

I think somewhere in the middle lies sanity.

It's well known that the right amounts of the right lipids can aide digestion, slow down the absoption rate of carbs, lower the rate of oxidation and cell death, improve cell wall structur and a host of other things.

It's also well known that too many or the wrong lipids can feed tumor cells, and too much fat  leads to a whole host of issues.

I think Berkson is questioned because of the simple mechanics....if we were supposed to get IV's of lipids why weren't we born with a portal for it?
Besides which, you can absorb ALA easily enough for far less cash.

There are a whole host of lipids and foods that we need for health but where too much will kill us. Take vitamin D and protein as just 2 of many such examples.

The point is, overkill can cause issues, and even the most brilliant doctors forget that sometimes.  A good example was when Linus Pauling insisted on IV's of Vitamin C to treat polio...well C does reduce virus, but the levels he used destoyed kidneys.  The point is to not get so enamored with any substance or new treatment to the point where we stop noticing that there are pros and cons with any therapy.  
I had to laugh, they actually had a doc on an episode of House try to return to Paulings methods...so all these fashions have their day, and whats out may come in again.

I'm not saying some oral ALA isn't good for you, just that hooking up to any substance that won't kill this virus but can upset a delicate balance bears examination.

If you look at a whole host of substances, proteins fats, salt, take potassium as an example...even a 1 or 2% change in blood levels is serious. So do you really want to raise your ALA levels 30% above what any normal human or animal would have in their blood?
That may be asking for trouble.
Plus, Berkson has not produced anyone who has SVR'd.
The only thing to cause this virus to disappear so far has been the very unpleasant treatment regime.
You got that right, it is unpleasant, but at least the virus is gone and doesn't continue to ravage the body.   To each their own I guess.

I'm of the mind that the proof must exist as results before we jump on any band wagon.
Benny Hinn has never produced one documented healed person either.
You don't ask the healer by their words to prove their work, you ask for documented proof...i.e. labs, labs of real people who can be reached and have it verified that they actually were healed..

I just heard of a study where just speaking soothingly while feeding someone made them metabolize differently. Just calming folks down can reduce viral loads, just thinking we are doing something for a disease can make it better, it's known as the placebo effect when something, anything is given, that a person thinks will help often does.

However there are plenty of folks in the graveyards who had sheep fat and laitrile injections...I wonder what they would say to us now.

mb

mb

[jillar]

I don't have a citation, but I read in a medical journal that although SOC can produce a sustained viral response, that's not the whole story. On further investigation, researchers found that while blood shows viral clearance, occult viruses persist in the liver and the brain.

Maybe that's what Dr. Berkson meant when he said HC can't be cured.

[copyman]

Maybe but I doubt it. Easier to believe that it is all about $$$. When dr berkson says no one can be cured it is because his therapy cannot do that. His therapy has never killed the non-occult virus to a point of "UNDETECTED" on a PCR test.... And never will.

Yes I have seen studies and see some truth in it. Unfortunately all we have at this point are very accurate PCR tests. And it sure feels great to read "UNDETECTABLE" on test result. What everyone with HCV is striving for and will take harsh drugs for.

As discussed on this forum many times, the ONLY CURE for HCV is the conventional drugs, Interferon, Ribavirin, and one of the new drugs, Telaprevir / Boceprevir.

[Ararat]

my Mama had HCV for 33 years when she discovered her sickness. Frequent headaches, fainting, aching joints, colds/flu were the most common symptoms she had.
She was diagnosed with fatty liver as well (ultrasound)
ALT levels was elevated 180 - 200
Viral load 400,000

After the shock we received, we tried out different herbal combinations, dandelion, milk thistle, licorice etc...

I read about ALA in a HCV book which included several other alternative treatments. Over the past year, Mama consumed 2 packs ALA, 100 tablets each (600mg).

ALT dropped to 60, all symptoms disappeared (headache, fatigue, joint pain). Mama is very happy, likes to greet the Sun and eat healthy, produces high quality regular stool, likes to dance Gamgam style. Oh, last time we checked, Viral load increased to 1,500,000. Do we care? not at all

We did not know about Dr.Berkson and all about ALA,  but our resolution for 2013 is to follow the triple antioxidant treatment ALA, selenium and milk thistle.

My question, does anyone know how often one should take this treatment? Everyday throughout the year? 2 weeks bid every 3 month?

May you all get healed

    

[coeric]

I used ALA everyday from  2007 when i was diagnosed with cirrhosis until 2011 when i started to treat.  i had been infected for 26 years in 2007.  it may have slowed my progressing but but the blood work including platelet count continued to show signs of progression towards liver decompensation.  and i progressively got more symptomatic prior to treatment.   there are stories about people reversing liver scarring also called fibrosis with supplements like ALA.  you might want to check out the heptech web site if it is still up.   unfortunately as we age the scarring process can rapidly accelerate and if i were in your mother's shoes i would want to know how far the scarring has progressed.  i would make an appointment with a hepatologist or a gastroenterologist that has extensive experience with this disease. in the US the most common test to determine the extent of scaring is a liver biopsy.  please understand that this board mostly deals with alleopathic treatments.  
blessings
eric

[coeric]

you did not mention your mama's age.  most of us that are treating are in our 40s, 50s and 60s. i'm 57.  although there is at least one brave soul here that is treating in his 70s.  as you may have gathered from reading some of the posts here the current treatment is tough, but in 2 to 4 years there will likely be treatments that are much easier.
many blessings
eric

[coeric]

you might also click on the link entitled "HepResearcher (doctor) on various topics" at the bottom of the page where you posted the question.  there are a collection of posts some of which contain info about supplements that may slow fibrosis.  HepResearcher helped formulate heptech.com products.  i never tried the products becaude the cost was too much. something like $400+ a month.

opps i misspelled allopathic in my first post.

[Ararat]

my mama is 57 and has supposedly got her hepc due to my birth (c-section blood transfusion).

I must say, last year mama got "Lichen planus". A couple of GPs told her it is due to lack of vitamins. She eventually did some laser treatment and was gone.

Now I understand what mistake we did, mama didn't take B-Vitamins along with ALA, hence she got depleted after consuming some 200 tablets of ALA.

The news of hepc was a shock to all of us family members. We had to scan through all kind of therapies allopathic and others.  

We went to several hepatologists and high caliber virologists. They all sing the same song, Intereferon/ribavirin and they offer no choice. When we tried to discuss with one doctor about alternative options, he rudely  told mama either you come next time and get the interferon, or don't come back.

Only one hepatologist (female) advised us against the treatment and having checked the results of all her tests, told her liver is doing 97% fine. I think the number is an oversimplified way of saying the liver function parameters are good.

The platelet count also increased from 170k to 225k. Red and White blood cells also came to normal levels, previously were low.

As for liver biopsy, I would not let anyone poke into my mama's liver as long as it is really really necessary.
We did some test, fibroscan if I am not mistaken or however it's called, some kind of proxy that highly correlates with biopsy results if not superior to. It takes some liver function parameters and uses some algorithm to come up with 0 to 1 value indicating the level of necroinflammatory severity and fibrosis, it was something like 0.35 ...  

I know the board is about Allopathic treatments. In fact, ALA probably is the first and only allopathic medication I am starting to get convinced about.

now that we filtered many information on hepc treatments conventional and non-conventional, we are about to start the triple antioxidant treatment, Sylimarin, ALA and Selenium. Previously it was like oh let's try everything all at once with tons of herbs and supplements, but was not a systematic approach.

The plan is to take ALA for 2 weeks every 2 month. I do not want her to get hooked on some miracle drug, but just boost her liver every once in a while.
Where as will keep her on Selenium and Sylmarin throughout the year (200mcg and 300 mg)

I'm not here to argue pro this or against that, but only to share my experience with this drug which undoubtedly we benefited from and would probably benefit others.

Again, we are doing it entirely independently without consulting any doctors. But probably we'll go to the nice lady doctor who advised us against interferon and share our experience with her.  

Personally, having seen the liver enzymes drop to almost normal levels, and having got rid of the hepc symptoms, it is a huge relief.

oh, by the way, one interesting observation, in the country mama lives in, although she is non insured (neither private nor public), the government pays the complete treatment costs for intereferon/ribavirin...although this same government would not buy you one cheese sandwich if you were starving in front of the parliament. What a corrupt world we live in!
Death will come to all of us sooner or later, I know my mama spent lots of nights crying alone about her ailment. I am the cause of her problem, doctors even had to remove her womb due to surgical complications, this also caused many hormonal problems to my mama which affected her health and liver status. And in her prime years, she used to loooove chocolate, I can remember the massive amounts of cadbury she used to eat, and it all piled up in her disturbed liver, add on top the high levels of unregulated DDT that was sprayed on veggies in the early 70's and 80's, all in all it is a recipe for disaster. At some point we have to contemplate on some liver flush.

I always emphasize to my mama to accept death. I even made her read Bardo Thodol to get rid of her fears. I think everytime she visited the doctor she got even more sick due to stress. Things like oh you are going to die if you don't take the treatment. I specially hate the 25 years to cirrhosis song. And when we got higher viral loads results, they put more pressure on her. They said the lower the VL the easier it is to cure you and that she is putting her life in danger by such gambling.

In 3 months I am willing to update with new results. hopefully positive ones.

  

[Ararat]

one things I forgot to mention, mama NEVER smoked, drank alcohol or took recreational drugs all her life. But on the other hand, she used to take quite often drugs like paracetamol or anti-depressives. Not anymore though.

[Ararat]

one Mistake above, was not Fibroscan what we did, but "Fibrotest"

One last thing I should mention is that my mother is very nutrition conscious (in the last 6-8 years), and I think this is helping her a lot.

her hcv Genotype is 1b.

Eric, one question, did you take ALA with Vitamin B complex?

From Dr. Burt Berkson
"...dehydrogenase complex, there are several B vitamins
that are depleted, especially thiamine and biotin. So you
really have to replace the B complex vitamins, otherwise,
you get very sick by taking lipoic acid by itself."


Also did you take  ALA, Sylimarin and Selenium together or ALA alone?

There is interesting research on Selenium role.
Here from Germany, unfortunately no results are published for free
http://prsinfo.clinicaltrials.gov/ct2/show/NCT01355107

Free publication version from Pakistan :D  Hcv patients have lower Selenium concentration compared to healthy subjects
http://www.saudijgastro.com/article.asp?issn=1319-3767;year=2012;volume=18;issue=2;spage=106;epage=110;aulast=Khan

Silymarin speaks for itself I guess and needs no advocate.

[coeric]

Eric, one question, did you take ALA with Vitamin B complex?  

yes i took a B100 and later the B-Right from Jarrow formulas.  now i get the skin flush from the large doses niacinamide or niacin,  so i don't take it anymore.  i did start taking the ALA again after the end of treatment.  i get my B's from a multi vitamin and diet.  

Also did you take  ALA, Sylimarin and Selenium together or ALA alone?  

i stopped taking sylimarin after reading a retrospective study that found that it was of no help with HCV.   i did take the ALA with Selenium.  I believe the selenium is important for the synthesis of glutathione.   i believe one of the heptech formulas was designed to increase glutathione.  i also took glutathione from setria and also acetyl-glutahione first thing in the morning.
http://www.sciencedirect.com/science/article/pii/S0168827802000600

i recall hepatitis researcher writing about the importance of polyenylphosphatidylcholine. i believe it is one of the few and perhaps the only supplements that has been proven through repeated biopsies in alcoholics to actually reverse liver fibrosis.  in Europe it is marketed as Essentiale Forte N.
http://www.ncbi.nlm.nih.gov/pubmed/9113278

i was fortunate to have advice from physicians and other experienced health professionals.  i don't know if any of the supplements or drugs or therapeutic phlebotomies i did actually slowed down the scaring process.   as i said in a previous post my blood work got progressively worse in the five years prior to treatment.  

the average age a which we develop cirrhosis is 65. http://www.ncbi.nlm.nih.gov/pubmed/17355454
http://www.medscape.com/viewarticle/554637_3
i was diagnosed with cirrhosis at 52.  i waited to treat until i had a better than 50% chance of a cure.  since i was experiencing cirrhosis prior to treatment i will have a risk of hepatoma (primary liver cancer) even if treatment is successful.  perhaps i should have tried to treat earlier.  i was first diagnosed in 1989 with non-a non-b hepatitis because of elevated transaminases and a history of transfusions.

many blessings
eric

[pugdaddy]

DrDigger,
I am 'SVR' - i.e., cleared the HCV virus - but have extensive fibrosis and some degree of early-stage compensated cirrhosis.  I am considering making the cross-country trip for an appt w/Dr Berkson.  You posted regarding a positive experience and success with his treatments.  Are you still doing well?  Would you recomend him for treatments for regression of hepatic fibrosis??
Any input or response is much appreciated.
Kind regards,
PD

[Bali05]

Hi PD,

when you are thinking to do the Berkson ALA IV protocol how are you going to check if it will improve your fibrosis more so than it already does ?

Since you cleared the virus and if you treat your liver well it should heal itself.To what degree and how long it will take is individually different.

b

[pugdaddy]

B-
You make an excellent point.  I was primarily just thinking longer-term about what other options might be available - and am interested in getting as much feedback as possible from Dr B's patients.  Regardless of anything else, before seriously pursuing IV ALA I would first continue for another +-6 mos w/my present supplement regimen that includes PCP, silamyrin and oral ALA 600 mg twice daily.  I have recently confirmed some mild portal hypertension - and it's the symptom that most concerns me.  I still have good energy level, good sleeping pattern, normal LTFs.  Platelets are good/stable at 230K - my only blood anomaly is mild anemia (RBC 3.8).  The $64,000 Question is whether or not (with alcohol cessation last yr) with the portal hypertension and anemia - albeit both mild:  can my liver can still improve...or have I already passed the too-little-too-late  'point of no return?'

[Bali05]

" am 'SVR' - i.e., cleared the HCV virus - but have extensive fibrosis and some degree of early-stage compensated cirrhosis"

How and when was that diagnosed  ?

Portal hypertension and platelets in the mid 200s sounds odd to me.

b

[Idyllic]

I don't want to de-rail this thread but I could not help but wonder. Do you mean you were SVR 10 years ago but resumed drinking and stopped in April of 2012 ~ however during that period your fibrosis (or symptoms) may have progressed? Surely the longer you stay alcohol-free would be more of a factor in healing, No?

Were you actually diagnosed with PE and Mild Anemia? I would have thought platelet count would be much lower- perhaps in the 140s (though I am sure like everything it can vary).  Further, on my last CBC the LabCorp Reference interval for RBC is 3.77 - 5.28. I am not suggesting this is entirely the case but I have drawn inaccurate conclusions when self diagnosing and I would hate to see that to anyone else.

[pugdaddy]

Idyllic, thanks for your input!

Regarding your first paragraph - yes, you are correct on all counts.

Other than the lab reference you gave, I've never seen one with normal adult male RBC as anything under 4.0.  Here is a copy/paste:

"A normal red blood cell count will vary depending on the age and sex of the person tested. The normal number for women tends to range from about 4.2-5.4 million red blood cells per microliter (million/uL). Men have a considerably higher normal range, falling between 4.7-6 million/uL. Children tend to fall somewhere in the middle of these two, and have a very narrow normal red blood cell count range of about 4.6-4.8 million/uL"

The above certainly indicates that my current RBC of 3.8 is consistent with mild anemia.  My RBC was in the 4.8 range  - and then rather sud experience??denly dropped.  If you don't mind, I would be interested:  what type of inaccurate diagnosis did you experience??

[pugdaddy]

It drives me a bit nuts that there's no edit feature!  My last sentence got botched, so I will try again...

Idyllic, thanks for your input!

Regarding your first paragraph - yes, you are correct on all counts.

Other than the lab reference you gave, I've never seen one with normal adult male RBC as anything under 4.0.  Here is a copy/paste:

"A normal red blood cell count will vary depending on the age and sex of the person tested. The normal number for women tends to range from about 4.2-5.4 million red blood cells per microliter (million/uL). Men have a considerably higher normal range, falling between 4.7-6 million/uL. Children tend to fall somewhere in the middle of these two, and have a very narrow normal red blood cell count range of about 4.6-4.8 million/uL"

The above certainly indicates that my current RBC of 3.8 is consistent with mild anemia.  My RBC was in the 4.8 range  - and then rather suddenly dropped in recent months.  If you don't mind, I would be interested:  what type of inaccurate diagnosis did you experience??

[pugdaddy]

Hey B - I always appreciate your imput.

Diagnosis this past year based upon the following:
A several yrs-old biopsy showed 'bridging fibrosis with septae' which is stage 3 extensive fibrosis...and I only went downhill from there due to drinking.
Three AshFibrosure tests during 2011-2012 scored .70, .68 and .71 - stunningly consistent results.  It's a 100-pt test - anything under .25 is normal/minimal fibrosis.  Anything over .70 is 95% probability of cirrhosis;  anything over .74 is 100% probability.  I think it's safe to say that I have SOME cirrhosis...just how extensive is unclear.  Even a biopsy today (since it samples only1/50,000 of the liver) wouldn't tell us how extensive it is. Will be seeing the doc again in a couple of months.
I have palmar erythema.  I have periodically cold hands due to diminished circulation in hands/fingers.  Hope this helps to provice a clearer picture!  I hope you're doing well these days.  Any thoughts are always welcome.

[Bali05]

ok , than I have cirrhosis too....because I ran the FibroSure before tx
and 1 year after and it came back F4 - cirrhosis. BTW my platelets
are like yours in the 200s.
The only problems is that I have been seeing Dr. Douglas Dietrich Prof.
of Medicine @ Mt. Sinai several times before and after tx. I had approx.
6 FibrosScans done there in the course of 3 years.Diagnosis F0-F1.
I showed them the FibroSure bloodmarker test  and the responds was the test was no good. I have very little to no fibrosis and should enjoy life and I can drink alcohol in moderation....Dr`s orders.
They see patients coming in frequently with results from that test that are false. Mt. Sinai is a transplant center and they should know what they are talking about.
BTW what is your INR or Protime and Albumin ?
Also I am curious as to which values on your fibrosure were out of
normal range. Was it haptoglobin and alpha2macroglobulins or GGT etc?
You did the NASH-fibrosure for non-alcoholic liver disease maybe you should try the one for alcoholic liver disease ASH-fibrosure ...lol


b

[Bali05]

" and I only went downhill from there due to drinking. "

How much were you drinking ?

[pugdaddy]

Thanks B - however:
My three blood tests were all the Ash (not the NASH) Fibrosure - I did take the Ash Fibrosure test that is specific to alcoholic liver disease/ALD.  I do also remember these:
INR is 1.1 - normal.  
Albumin is 4.5 g/dl - normal.
Total Bilirubin is 0.6. - normal.
GGT is 31- normal.
Fasting Glucose - 80 - normal.
I'll locate my creatine and other test numbers and P.M. them to you.

My alcohol intake escalated to approx 8-10 fl oz of 80-proof liquor daily during the last 2-3 yrs of my drinking career.  Certainly enough to wreak havoc on an already scarred liver
  
BTW I do recall that my A2M and Haptoglobin were both a bit deranged...as was my APO-A1.  Funny that you asked specifically about those first two...was there a reason??!

[Bali05]

my labs are very similar to yours only that my GGT is lower 16.
It was in the 30s while infected and abstinent from alcohol and
60 while socially drinking while unkowningly infected.

Anyway on the FibroSure my A2Ms were high and haptoglobin low.
Everything else normal . My hepa Dr. Doulas Dietrich (he used to post
on MH years ago and also had HCV at some point and did tx )
told me to go see a hemotologist if I was worried about it but that
my liver was totally just fine. Something is stressing my reds and strenuous exercise which I enjoy can do that.

What is your AST ?

Don`t get me wrong but based on my personal experience if the Fibrosure is the only thing that says cirrhosis I would not trust it.

BTW , not everyone gets cirrhosis from drinking alcohol but daily consumption is no good.

It is what we do every day that eventually ends up killing us not so much what we do
once in while.

If I were you believing I was boderline chirrhotic and drink alcohol on a daily basis
than I would be more scared about HCC risk than fibrosis.

b

[pugdaddy]

B - i'd sent sent you a separate private msg that included my AST, ALT, etc.
Did you ever have red palms??
Did you ever have cold extremeties (esp. hands)??

[pugdaddy]

B-
continuing from the post:

Last Ash Fibrosure:
Haptoglobin was in normal range at 67.
A2M was 318 (normal is 110-276)
APO-A1 was 109 (normal is 110-180, so no biggie there).
All other Ash Fibrosure markers were within normal ranges.  
I do have AST/ALT inversion: AST of 29 and ALT of 25.  According to my doctor when AST is the higher number it's indicative of some degree of liver damage - even when both values are within normal limits.

My lipid profile is a bit abnormal:
LDL-P is high at 1400
LDL-C is high at 131
HDL-P is low at 28
HDL-C is low at 38

BUN is 14
Creatine is low-normal at 0.80

If there's any other score that's relevant just let me know - thanks,

P-

[BoceprevirGal]

Not so sure about the difference between the ASH FibroSure and the Nash FibroSure, but my experience was this:  I had a Fibrosure test done last year, and it had me at .77, and I was told (to my shock) that I had cirrhosis.
    My platelets were at 122, my Alt was 478 (AST 299), and the Alpha-Macroglobulin was high, at 4.3, and the Haptoglobin was low, at 26.
  I then had my first biopsy done, and was told I had grade 3 inflammation, and stage 2, fibrosis.
   I went into Tx, (genotype 1) and within 4 wks, my virus was Und, and Ast/Alt normal again. My platelets dropped hung at 90 during mid Tx, but dropped to 66 at EOT.
   At 3 months post tx, my platelets had then risen back to 122.
My guess is I actually had Stage 3, and the Tx was psushing me towards cirrhosis. I am hoping to have normal platelets at my 24 wk post test (I was  Und at 12 wks post luckily).
   But still, I wonder...are the low platelets an indication that I am cirrhotic now, or a sign that I have another (more terrifying) problem?

[Bali05]

How long ago did you stop drinking ?
Both GGT and AST are sensitive to alcohol. Yours are within normal range
however according to my experience your GGT could be lower and your
so does your AST.

If you are going to see Dr. Berkson with normal labs like that you are
going to be one of the healthiest patients there......lol.

Regarding your cholesterol ....what does your diet look like ?
Again , when you drink alcohol that is the first thing your liver will
turn into energy . Everything else you eat while ingesting alcohol will
be turned into fat and stored and over time cause  fatty liver

Here is what I would do with that lipid profile:
NO ALCOHOL , no grains (pasta , breads, flour) , no sugar , no omega 6
fats (vegetable oils)
Instead try to get your carbohydrates mostly form vegetables , your
fats from butter,olive oil, coconut oil (saturated fats are ok even healthy in moderation) , protein from poulty , fish , meat. Nothing processed and
take about 1-3 gs/day of high quality Omega3s (fish oil)
Add to that an exercise routine and your lipid profile will turn around.
If you do cardio exercise it should also better circulation and maybe
help with your palms.

How high are your triglycerides ?

Personally so far I don`t see any reason why you need to spend $$$ in ALA Iv`s.

b

[Bali05]

Your platelets are the same shortly after tx as they were before tx.
INF messes with your bone marrow where platelets are produced
which is why they often drop during tx.
I would expect your platelet count to improve now that the virus is
gone and your liver can heal.It takes time.

b

[Idyllic]

It is what we do every day that eventually ends up killing us not so much what we do once in while.
___________________

Amen ~ very profound
Hope you don't mind if I borrow that expression

[pugdaddy]

Thanks again to you both for your input!

B, I stopped drinking > six months ago.  My GGT has been trending down - last two tests were 38 and then 31.
Serum ferritin also trending down - on same test dates 160, then 120.
Many thanks for the dietary tips, which I'm in the process of 'perfecting'!
As for my triglycerides?..I don't know, but will research and reply further - thanks!
No Dr Berkson for me, at least not anytime soon.  I already do an oral supplementation that includes the recommended amt of ALA (600 mg/day) -

[pugdaddy]

Thanks again to you both for your input!

B, I stopped drinking > six months ago.  My GGT has been trending down - last two tests were 38 and then 31.
Serum ferritin also trending down - on same test dates 160, then 120.
Many thanks for the dietary tips, which I'm in the process of 'perfecting'!
As for my triglycerides?..I don't know, but will research and reply further - thanks!
No Dr Berkson for me, at least not anytime soon.  I already do an oral supplementation that includes the recommended amt of ALA (600 mg/day) -

[Bali05]

I predict your GGT will drop further and so will your AST but of course
I have been wrong before......lol.

Congrats on stopping the alcohol !

BTW , alcohol depletes vit Bs  and ALA uses it too so you should
take a good Vit B complex . I would test Vit B12 , Folic Acid and Vit D
with your next bloodwork.

b

[pugdaddy]

Thanks B - will do.  BTW I also take vitamin B-complex and vitamin D w/my daily supplements...

[BoceprevirGal]

   I did my ALA and Selenium, with folic acid, and vitamin E. I also did NAC and s-AME, but more sporadically then the first four supplements I mentioned.
    I also did a TON of green tea, in all forms:  gun powder green, Jasmine, Macha tea, etc.  I did this for at least two yrs prior to me Treating.
   I did end up getting worse though, with my AST and ALT both tripling in lab #'s.  My biopsy showed my infalmmation at stage 3, and my fibrosis at stage 2.  Oh, I also took vitamin D3 with the supplement cocktail. I feel like I may have cleared the virus quicker (in 4 weeks of just SOC, prior to the Victrelis beginning) because I was up on my vitamins. I also did large amounts of chewable vitamin C, as in about 2000 mgs a day.

[pugdaddy]

B-
Replying to your query, my triglycerides are apparently okay at 74.
However my LDL is 'borderline high' and HDL is 'borderline low.'  Will be re-testing everything in a few weeks -
P-

[drone57]

Hi I'm Craig, I developed Hep C in 1972 from needles drug use. I'm  a 55 yr old grandpa, with a background in Tool&Die design and making thereof . In Jan. of 2011 I had a gall bladder removed and they took a piece of my Liver and with pictures show advanced Cir stage5 hardening of the liver, HepC Geno type 1. In Aug. of 2011, I did the triple drug therapy for 12 weeks, with No Detec of virus .At week 14 with the 2, interfer and Riba I developed Dbl Pnumonia a severe strain bacterialy. After the 9 days in ICU drug induced flatline , I could nether move my legs or arms,after 9 weeks including therapy I came home in Jan. 28,2012 .
  I found out abot the triple therapy ALA, Silymarin, and Selenium, from a newsletter from Dr. Whitaker. To which I had High Hopes
  After reasearching ,I found out about OZONE therapy. I found a M.D. in Indy who did this prtocol. I also found out from him that my vitamin levels where very low. After 4 months of wekly visits using vita IV's and Ozone ,I started to regain my health. But not at the level I wanted.
  Then with the help of a clinic in Mansfield OH, the Get Well Center,I did a toxic cleanse which gave me back my strength in my legs(80%) and renewed my health to a remembered time prior to the surgury. I am  waiting for the blood tests for my Viral load. To which I did a steady diet of 3 times a week of Blood Ozone ,Peroxide, and 2 times a week of Vit. C and Nutritional IV therapies. This is all out of my shallow pocket.
  Will keep you Updated.