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17568 tn?1424977159
Why We Removed the Dr. Berkson Thread
Hi,

We took down the thread about Dr. Berkson until we have a chance to check into his background, credentials and treatments.  Given this is a holiday weekend, we won't be able to do that until next week.  

We appreciate your patience and wish each of you a very Happy Thanksgiving!!

Cindy Thompson
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Page 19 of 19
979080 tn?1323437239
Hey Upbeat,

So I did another comprehensive metabolic panel just one day after the other.

Also wanted to make sure , because at first I had a hard time believing these

amazing results.

Today my ALT is 41 and AST 16. Within a day and 2 IVs a couple of points.

I seem to be responding to this so I extended my stay down here for the second

time. (my holiday gift to myself) Also Lymphs are back to normal. I will give you an update before I leave next

week. I am aiming to get my ALT into the 30s .Which Dr. Ira Jacobson considers

a true normal ALT.


Bali05

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comeagain
You really have to read the entire article and even then it is hard to fully comprehend. The basic thrust is that our immune system causes the damage but the pathways and mechanisms by which that happens are hard for a layman to understand or follow. The underlying principle becomes clear, however, when you read the article.

Bali,
Now, I have always liked normal ALT & AST. A snapshot doesn't say much but persistently elevated LFTs are usually not a good indicator of liver health. Not always perhaps but more frequently than not. And persistently normal LFTs are usually associated with a lesser degree of liver damage and is discussed in the article I posted entitled:
Enhanced Ability of Regulatory T Cells in Chronic Hepatitis C Patients with Persistently Normal Alanine Aminotransferase Levels than Those with Active Hepatitis

Mike
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Wow thats great. It will be intresting to see what my numbers are.  I havn't checked yet. When I went there they were AST 135  ALT 203 .  I really want to see my Platelets number.  Are you going to do a Viral Load by PCR?  I sure hope they don't pull this thread.  I hope you have as intresting group in the treatment room as I had. Did you notice the earlier thread on Silmmarin?  
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388154 tn?1306365291
you never answered bills1028 question far back in this thread.

"did he explain how remission is measured?  In the deleted post you mentioned Albumin and PTT, did he say what he would be looking for?"

Why didn´t you answer? If you don´t know you can at least say so.

ca

Ps he is dr Berkson in the quoted sentences above.
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I never asked him that question.  I would guess all blood numbers normal and a super low viral load.  But its only a guess.  Bali05 will talk to him soon lets ask her to ask him.  Bali05 could you do that for us?  It is a good question and worth an answer.
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Not that it is pertinent to the question above, but Bali05 is a "he"  not a she.
Ev
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979080 tn?1323437239
Yeah some very interesting people in that treatment room.
By the way also got CBC today all normal , platelets also going back up.
I set it up so when I get back to NYC my GP will call Dr. Berkson and get
instructions for me to continue Berkson IV protocoll when needed at home.
Prefer to come down here though.Great weather right now.

Viral load will follow according to my protocoll.

As always , I keep you posted

"The proof is in the pudding"  /and it comes in different flavors.


Bali05



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476246 tn?1418874514
Strange that you hadn't heard of ALA before. It was included in our endless supplement discussions. Several of us here were taking it. It was also on Gauf's list.

I took it everyday since before starting tx until 3 months post.
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Yes I knew that.  Sometimes my fingers are quicker than my brain
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And I bet your favorite is artificially flavored pudding.
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"Strange that you hadn't heard of ALA before. It was included in our endless supplement discussions. Several of us here were taking it. It was also on Gauf's list.

I took it everyday since before starting tx until 3 months post. "

Not so strange.  

I didn't participate in your endless supplement discussions.  I'm sure if you went back through those threads you would find I make little to no appearance there.  I also didn't have a reason to study Gauf's list at the time either - I've read it since. One of the first things I did after being diagnosed for Hep C was to search out CAM therapies however not so much for me but for a friend's mom who had kidney disease and Hep C and couldn't do treatment.  Once that was done, my attention turned to treatment-related pursuits. Supplements were not relevant to my situation at the time as generally, no supplements are taken on treatment and I spent little time on those threads and much more time on riba threads and the like.  I headed into treatment and a clinical drug trial and consumed myself with treatment-related research.  During treatment, I started looking into supplements to boost my immune system out of sheer necessity and a bit of desperation - Ev and Gauf were very helpful there.  

I noted those supplement threads but did not have reason to engage and I needed to focus my energies elsewhere. I'm sure if the treatment had failed, I would have then turned my attention to supplements as a means of curbing any progression of liver damage.   Beyond that, I've hardly ever touched a supplement my entire life other than mega doses of C when I got the occasional sinus cold. I've had practically no health issues whatsoever until diagnosed with Hep C in 2006.

Strange to you, perhaps, as one who has taken supplements for years.  I've hardly touched them ever. And now, I suppose, my reason for engaging is the same as when I first found out about Hep C.  My interest is not so much for me but with regards to other people in my life who don't have treatment as an option right now.
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I just got back from a trip and was very happy to see your post about the decision to keep the Berkson thread deleted.

Thank you for taking the time to explain how the experts at MH decided that this UNproven treatment would be of no help to anyone on this forum.

Have a great holiday
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338734 tn?1377163768
The proof is in the puddingzzzzz (plural), and then only when you can do it in a way and number that controls the other variables so you know it's the pudding and not the cook or the kitchen! Otherwise there is no proof.

And thus the native hue of Dr. B's cooking
Is sicklied o'er with the pale cast of artificial flavor,
And enterprises of great pitch and moment
With this regard their currents turn awry
And lose the name of pudding!

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"Thank you for taking the time to explain how the experts at MH decided that this UNproven treatment would be of no help to anyone on this forum. "

Well, that's the "rubber band" interpretation of it.  Quite a stretch.  
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Bali / Upbeat,

I'm also wondering how remission is measured.

Bali - is it your intention to do this treatment as a choice to live with the Hep C rather than do treatment either temporarily or permanently?
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I never thought of asking,  I will make an effort to find out the answer.  I am hoping that Bali05 will check in after his next vist with Dr Berkson.   On a side note here,  has everyone noticed how after this thread was removed it has now grown even bigger.  The thing that has surprised me the most is the amount of personal messages I have received from people who no longer post on this board.  The reason they no loner post is because they saw how my thread was attacked by a few who try to control the board. I myself feel its a loss as these people mostly non  responders or relapsers have a great deal to contribute.
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388154 tn?1306365291
Thats very sad people don´t wanna come here because they are afraid hope they reconsider!!

You stated   "The thing that has surprised me the most is the amount of personal messages I have received from people who no longer post on this board."

How many are amount can you please be more specific and tell us the exact number.

ca
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I got a lot of messages too - from people who are no longer posting on the board because it is full of this Berkson stuff. I tell them to keep an open mind and a very sharp eye out because eventually someone just might have something to offer that we can really evaluate - aside from the anecdotal evidence provided so far.
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388154 tn?1306365291
Moles who would that be??
Hope you dont believe its people who are resurching and that are emotionally engaged in people treating here
People like Nygirl, mikesimon,,jd,andiamo,child24angel, are they the people you mean?

They have been on this board for years supporting people making efforts by investigating and  posting numerous af articles and studies or by sending a lot of comfort and hugs.
Not to mention their own hardship experiences with treating or kindreds treating.

I wonder if you or they who supect this good people hasn´t been around here enough to even come up with the thought.
If it really are some of this people you think are mulves I most say its out of the question at least it is in my mind and heart.

I know what the meds can do to a persons mind and even if some who are on the meds are suspicious I dare say there is lots and lots of people who thank God for each and everyone I have mentioned above.

Berkson wasn´t a keynote speaker at the NIH thx to andiamo we found that out
we also learned due to Bill1028s telephone call how expensive dr Bs treatment is ( how come you did not informed us about that)?

I most say if the only people writing on the thread would have been those who are pro drB , it would very much had been mostly vage and some missleading info we would have gotten.

Why don´t you thank Andiamo, Bill and mikesimon for what they have done on this thread instead of suspect them of hidden unclean motives.

That said upbeat, I my self are trying to have an open mind and are glad for all efforts that are maid to give us who suffers both from the disease and the meds as much opportunities as possible.

Therefore I will thank you and also Mhudnall for what you have shared with us.
and I don´t for one minute suspect neither of you working for drB.

I that is fortunate enough to have got SVR after two treatments( i´m one year post).   I have have felt so weird until some weeks ago so scary weird  that I almost regretted I took the cure.

My brain came back to me two weeks ago and now I don´t regrett treating anymore instead i feel blessed.

Thx to mhudnall I found LDN been on that for three months started with 4.5g but since a month only taking 3g think that is my dose.
I don´t know if its the LDN that has done the trick or its just time or prayers from two pastors that I have recived.
The meds only cost me 4$ a month and  I really think its harmless.( so cheap due to mixing it my self from naltrexone pills)
I will continue to take it also gonna try ala , R.ala that is which i really belive can benefit me so thx again for putting me on those tracks.

Good luck upbeat i really wish you and everyone else who have chosen not or can not
do soc the very best keep up the good mood!!

Merry Christmas to everyone reading.

ca.

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388154 tn?1306365291
LDN should be mg I take 3mg not grams.
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I Myself don't believe anyone here works for big pharma.  I only pointed out that there are some that do. I was trying to point out that people like HR and Mhudnall brought alot of good info and I for one miss their imput. I don't blame them for not wanting to post and take all the crap when they are like others on this board trying to help.  LDN is something that I learned about on this board.  I asked Dr Berkson about it but he said it wasn't part of his protocol for hep -c.  I did get some 3 mg from and and took them for a few days but they kinda made me feel funny so I stopped.
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92903 tn?1309908311
Apparently we've got loads of people on either side of the issue who are no longer posting because of this thread. Are they not posting by virtue of some sense of moral offense?  Or is it a boycott against censorship, or lack there of?  Maybe some of these folks would post here and let us know?

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You wrote:


"To:  jdwithhcv

You were involved in the original thread.  Whats the difference?   You wouldn't be one of those people involved with the drug companys are you?  Strange to me how someone without a vested intrest would want to be so involed with this discussion."

Now you write:

"I Myself don't believe anyone here works for big pharma.  I only pointed out that there are some that do."

How do you reconcile these two statements?

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Just asking.  Do You?   I could be wrong and maybe there are people who work for the pharm companys.  I doubt it but you never know.
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Ive heard of "drug wars",but this is getting ridiculous.Looks like big phama and the health food industry are always at war.

Slade Whitfield
On the path to the greatest nemesis, two enemies will walk together.
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979080 tn?1323437239
"Bali - is it your intention to do this treatment as a choice to live with the Hep C rather than do treatment either temporarily or permanently?"

Dear Trish,

When I first was diagnosed in June I was told by my hepatologist to do interferon tx

and that I had a up to 60% (gt4) chance of SVR. My very first question to the

hepatologist was what I should do if this sx ladden treatment won`t work and

there was a big silence in the room.

It was very clear to me right away that more important than doing interferon was

to figure out what to do if it failed me. I do not want to do this like some of the other brave

people like Mike Mhundall (spelling) who`s health was severly impacted by tx

and than had to pick themselves up to find another way to live with this.

I much prefer to go after plan B while I am healthy and energenic because it is not

easy by all means to find such plan B because you are totally on your own.

To get back to your question, I have not decided yet if and when to do interferon.

Right now I am doing Nitazoxanide + Dr. Berkson and for the first time in a year

I see a dramatic drop in ALT/AST plus overall improvement. It just happend so

I still have to see how low I can get it and how long it will stay ect....

Who knows maybe I SVR with Alinia it happend to some gt 4s and they

did not have additional support thru ALA IVs or modern chinese medicine.

Chances are not great but nobody really knows anything for sure unless

you do it and live to tell your story.

It amazes me when I get these black or white questions. The truth is the whole

Hep C chapter is one big giant grey zone everyone has to somehow navigate thru it.

Maybe I will add SOC in 2 months , maybe I will add it in 4 months , maybe I will

wait for PIs , maybe I won`t do it at all and wait for interferon free tx.

All depends on how things work out one lab report at a time.

I prefer to row my own boat.

Does this answer your question ?

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148588 tn?1465782409
Your approach at least has some reasoned thought behind it. Other, more vehement defenders-of-Berkson / attackers-of-interfearon - not so much.
If you're willing to 'labrat' yourself with your eyes wide open and constant bloodwork to back up your decisions, more power to you. I personally chose to co-tx with TCM herbs (without my gastro's knowledge) but only because I had met the person doing the compounding and had 10 years of ALT/AST results that told me his products were, at worst, harmless. Did I SVR because of the herbs or despite them? Good question. If you clear, the same holds true. Would the Alinia alone have done it? As long as you can accept the consequences of your actions, it's all good.
As for Berkson himself,  (regardless of what the relative merits of any of the individual components he is peddling turn out to be) he seems to be a less than scrupulous salesman.

"I sell the things you need to be
I’m the smiling face on your t.v.
I’m the cult of personality.
I exploit you, still you love me
I tell you one and one makes three.
I’m the cult of personality."

http://www.youtube.com/watch?v=7xxgRUyzgs0
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I have removed the Berkson study.

Also wish to mention that hundreds of people who visit our message boards/blog/site have found help and support at this site. Its a great place to ask a question and get an accurate answer. I myself have referred members to these boards.

Thanks for being here.

Janis and Friends website/blog/owner

Tina

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67573 tn?1261286290
[youtube]MpYftnVxRQ0[/youtube]
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Hi guys.  I've been out of town working.  Sometimes we also have to understand that people just stop posting, maybe they have other things going on or just re-center and spend less time on line.

Tina, thank you for the note.  One does not read *why* the link was removed but one might infer a reason.  I will also note that according to Upbeat one of the contentious substances, LDN.....according to Upbeat ......Dr Berkson was no longer treating HCV with it.  This is all second or third hand info, but still just in the pot to consider.

By the way Tina...... there are many of the most informed people, or whom I consider knowledgeable and respected who often refer people to Janis and Friends.  I think it is one of the great HCV information sites.  I myself found it so much better than many of the government information sites.  I would extend a really big thanks to you and the people who help with Janis.  It's just simply one of the best of HCV sites.

And to people who find themselves on either side of this argument; remember that we all share a common goal and a common point of unity.  We are all just trying to survive.  Both sides are trying to help people with HCV and they may have a little edge because they believe they are doing so.  I believe that the emotion or reactiveness may come from the conviction what they are doing is right.  I don't think any of this is about trying to sell anything or having any financial ties to either side of the treatment "solution".

Other than that;

Merry Christmas.  Like Tina, I also think that it's a very good board and that there are a lot of informed people here.  I often think that getting a good answer means getting a well rounded answer, and surely you all help provide that.

best,
Willy
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979080 tn?1323437239
"If you're willing to 'labrat' yourself with your eyes wide open and constant bloodwork to back up your decisions, more power to you"

Please explain how this is different from doing SOC ?
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148588 tn?1465782409
Lack of a 'statistical universe' (others who have 'labratted' before you) to guide your decision making.
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979080 tn?1323437239
Not good enough by all means.



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979080 tn?1323437239
New labs are in:


ALT now 34
AST now 18
GGT now 35 (was 50)

Everything else in normal range and keeps improving ( iron,ferritin,LDL....)

Still doing one more LFT before I leave.


Bali05

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Your numbers look pretty good.
Good luck,
Mike
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I don't recall seeing it .. would you mind sharing what you're on and at what dosages and at what frequency you're expected to continue at, if known?  I'm trying to ask this "grey" enough .. ;->
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Wow those are great, I kinda wished I had stayed for the second week of treatment.  It was thanksgiving week and they were going to  be closed during the middle of the week so I decided on doing just the one week.  I will be doing my labs soon and will let you know.
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979080 tn?1323437239
Staying until they close for the holidays.
My total stay will be 2.5 weeks.I feel  I am on a roll so it is
worth the expense to get my ALT as low as possible.
Keep my fingers crossed for your labs.
Let me know.
Remember Linda (the nurse)?Wish I had her around all the time.
She has such a great practical understanding and knows a lot.
It took me some time to see that , the first week I was miserable
with some other issues I have and was about to leave until I got
my first #s back.
Got my protocoll from her today in writing so I can hand it over
to my general physician in NYC who will continue  ALA for me
whenever neccessary.I thought they might be a little reluctant
in sharing this info but the opposite is the case. My GP should
give me a discount since I get him some valuable info he can
use for other patients. Will see.

I had a hard time believing my results at first so I ran different labs
on different days and my #s are improving by approx. 10 point ALT drop
per week so far. Will run my last labs here tomorrow.
Starting to get itchy for a PCR. Originally I planned my next VL in 2 months
from now. Have not decided yet.

"the proof is in the pudding"


Bali05

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979080 tn?1323437239
MY last lab report from Dr. Berkson:

ALT  now 29
AST now 14

Again everything else in normal range and improving.
According to the very respected hepatologist and Hep C treater Dr. Ira Jacobson
my ALT is now in the healthy normal range which is below 30.

Leaving tomorrow for NYC and will do new LFTs after a week of stopping
ALA IVs and I will run the entire menu of labs including PCR in about
8 weeks.


Happy Holidays and a healthy and prosperous 2010

Bali05
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338734 tn?1377163768
Congrats on the great improvement in LFT values! I hope they continue post ALA Tx.

Best Christmas and Holiday wishes to all y'all!
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213141 tn?1270665712
Very interesting thread. I've come to this board many times claiming how I healed my parents of Hep-C. It is interesting that there's a doctor who is using antioxidants to help people with Hep-C. He uses antioxidants such as "alpha lipoic acid."

I also used "alpha lipoic acid" including many other antioxidants. I gave my parents lots of fresh dark green leafy Vegetable juice, including Spinach and Broccoli on a daily basis.

Here's an article about alpha lipoic acid:

http://www.ihealthdirectory.com/alpha-lipoic-acid/

Alpha lipoic acid
Alpha lipoic acid (ALA) is the one and only antioxidant that is both water and fat soluble. This is a great thing because it means that alpha lipoic acid can reach all parts of our cells. This gives our cells ability to trap free radicals inside the body. With less free radicals floating around in our body, the healthier we can be.

Since aging is caused by free radicals causing damage inside our bodies, we can help prevent this from happening by giving our bodies enough alpha lipoic acid. This will give our cells all the power they need to fend off the damage and help keep our bodies youthful from the inside out. Alpha lipoic acid is also responsible for increasing the levels of glutathione. Glutathione increases the body’s ability to get rid of toxins. Alpha lipoic acid can also cross the barrier from the blood into the brain. Therefore the important substance can be used throughout the body and where it is needed. By reaching the cells of the brain, the alpha lipoic acid can eliminate toxins in the brain, which can prevent from having memory loss, Alzheimer’s disease, strokes, dementia and even Parkinson’s disease.

Another great thing about alpha lipoic acid is that it has the ability to recycle itself along with other important nutrients including vitamin C and vitamin E. With this ability, the alpha lipoic acid and the other antioxidants continue ridding the body of toxins over and over again. This enables the body to use the alpha lipoic acid in many beneficial ways. Alpha lipoic acid is also being used for patients suffering from diabetes. The important nutrient can help speed up the removal process of the glucose from the blood. It is also beneficial in helping patients with HIV and AIDS to boost the immune system and fight off other illnesses. As well as helping cancer patients get rid of toxins from chemotherapy and prevent tumors from growing larger.

In order to get your required amount of alpha lipoic acid you should eat plenty of green leafy vegetables. Spinach, collard greens, chard, broccoli, and other dark green vegetables are good sources of the nutrient. You may also get enough alpha lipoic acid by consuming animal products. However, animal products are not always the healthiest form of getting these nutrients since animal products also contain high amounts of fat. Yeast is another healthy food that contains alpha lipoic acid.

When it comes to taking an alpha lipoic acid supplement it is important to find the correct form of alpha lipoic acid. Most of the supplements on the market are synthetic form of the nutrient. This can be found on labels as S-alpha lipoic acid. In order to get the true benefits of the vital nutrient you must take the real and true form. This is labeled as R-alpha lipoic acid. This form can be much harder to find and may need to be prescribed by your doctor. When taking the correct from of alpha lipoic acid you do not need to take nearly as much and your body absorbs it much quicker.

If you have a health condition that could benefit from taking alpha lipoic acid, discuss the possibility of using a supplement with your doctor. Before taking any supplement you should talk it over with your doctor. The doctor can also discuss with you the potential side effects of consuming too much of the nutrient. Although there are many wonderful ingredients for our bodies, taking something in moderation is often the best way to ensure your getting the proper amount without causing harm to the body.
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979080 tn?1323437239
Thanks , IamTheWalrus,

That is exactly my next , to see if and how long my LFTs will stay in this
range. In order to help this Dr. Berkson gave me diet and supplement protocoll
which by the way are very reasonable. A diabetic has a much stricter diet than that.
Also the supplements are not all that many and easy to take with food.
By the way if I have to keep getting a few ALA infusions once in a while is not that bad.
Keep in mind I am also taking Alinia (Nitazoxanide) that has proven antiviral
properties for geno 4.Still counting on that one.
One step at a time. For now my liver is in a healthy normal range which means it
can repair itself given the proper nutrition and care.
Isn`t that what they say when you do SOC and fail ? That at least for the time while
on interferon your inflammation goes down and your liver can heal even if you relapse later ?

As I said earlier SOC is not the first answer for me because if you fail which is a 50% chance you
still need to figure out how to deal with this disease only that in addition to that you
will properbly be suffering from brainfog and god knows what else.
So better to look at that possibility upfront while still healthy and energetic.

One lab report at a time.

Bali05




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338734 tn?1377163768
This may not be the thread to debate the relative efficacies of anti-oxidants or other agents in eliminating the HCV. Maybe more appropriate to this thread would be the issue of what constitutes scientific proof of efficacy.

To Bali - SVR is the goal and the answer for me. I will continue to try. Right now, palliative treatments are of secondary concern. But I do see your point on the health of the liver in the meantime, however, I have not seen proper study that shows hard evidence of anything beyond a healthy diet and exercise to achieve that end so far. That could change later, I admit.

Matt - what can I say that hasn't been said to you before? I don't think I can add anything constructive.
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979080 tn?1323437239
Oct 09:

ALT 61
AST 33
GGT 63

Dec 09:

ALT 29
AST 14
GGT 35

The hardest evidence for me are my own labs.
Viral load will follow in early Feb.

Happy New Year
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Was your LFT done also done by Berkson?  If so, would you consider having the test done by another doctor?
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979080 tn?1323437239
FYI

I did LFTs on several different days with 2 outside independend labs including

LabCorp.

Did those LFTs because I wanted them , not  Dr. Berkson. All his office did

was fill out the paperwork required by the labs.


Happy New Year




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979080 tn?1323437239
Just started another round of ALA IVs with my local GP only this time I had him copy
my Berkson protocol ncluding ordering the idendical ALA from the same pharmacy.

Going to continue this for another 2-3 weeks at which point a new  HCV RNA  is at order.

I will keep you posted.

"proof........pudding"

Bali05
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5154342 tn?1370274567
Is it just me and my web browser or do these ancient threads that have had no activity for years just somehow manage to randomly and magically percolate to the top of the heap?

Kind of annoying...if it's not just me and my computer and my web browser, could maybe one of the maintainers of this website look into why this phenomenon occurs? And fix it so it doesn't do that anymore?
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253566 tn?1219683299
They are appearing here because a new community has been created... so the threads you are seeing moved did not fit in the old community and are being moved into the new community.

Hope that helps as to why you are seeing these very old threads suddenly come to the top...
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707563 tn?1455827280
This thread is appearing near the top because it has had some recent posts that we have removed.

This thread is closed.

Thanks,

Emily

***************  CLOSED THREAD  ***************
            NO MORE POSTS, PLEASE
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