Lloyd Wright (spellcheck)

[pitter]

oops spellcheck..left glasses downstairs...I meant
Lloyd Wright

[Forseegood]

don't know if he is the best guy to talk about on this forum...I do think his site is "interesting" but his claims are certainly "overblown." To me at least. Have a feeling if anyone posts about him at all here, this will be the nicest post...hope youre well...

[nygirl7]

She is correct - I had to tape my mouth shut not to say what I wanted to.

[lorijean]

He has been a huge help to me--my liver enzymes were in the 250's and after following Lloyd's advice for 4 months, they are now ALT: 48, AST: 38. Personally, I think he offers sound advice.  Lori

[jmjm530]

I would not take anything on that site at face value without confirming with other sources. The biggest danger with sites like this is that they can discourage those with signficant liver damage from being properly diagnosed (i.e. having a liver biopsy) and treating if necessary.

[mremeet]

He's a liar and a scam artist. Cow glands will not cure you. NEXT!

[jmjm530]

Mre: "Cow glands will not cure you"
-------------------------------------------------
True, but they could make you feel a lot better.

http://www.geocities.com/lollophotos/gina135.html

[pitter]

thanks for the input, and so many months later. I honestly do not think that  anyone would go to the lengths he does ..for a scam.
what exactly did you do, if you don't mind?
jmjm, I understand what you said. Me personnally , I have had the biopsy...and I surely respect everything that you have to say.
and I certainly do not look forward to the SIDES of treatment,... so I will keep my mind open to everything ,and will make an informed opinion....in time.
mremeet, not opening that with you right now. I don't believe in all black and white.
thank you ...love Pitter

[jmjm530]

Without remembering your stats -- in general,  not saying that treatment is the only option open to you or anyone with HCV. In fact, someone just posted over on the other side, some alternatives with botanicals: http://www.medhelp.org/posts/show/373346
Just saying that LLoyd Wright seems to make some exaggerated claims that should be investigated independently of what's on his website.

-- Jim

[mremeet]

Ok, well let us know how the glands work out for you. In fact, maybe "lorijean" can contribute more and explain how she's been helped by wright's glands? Y'know, provide a detailed synopsis of her "treatment." That would be interesting to hear about, I mean everyone with HCV is always looking to learn more about promising treatments. And it's especially serendipitous that lorijean joins the conversation just now, I searched her name and apparently this is her first time posting. What luck for all of us that she just happened along when she did. Lorijean?

[pitter]

Hi ,53, damage 0-1 geno1. vrld, 3.6 mill.I am not saying that I BELIEVE in Lloyd Wright..But there may be some thing to what he believes.  I have so far done nothing except a feeble attempt at taking a few mlik thistle pills. I am waiting to be seen by a diff. hepatologist...that has a long waiting list. Got the biopsy 3 mos.ago. I am terrified of the sides. Don't think I can take it.
Mremeet, you are snarly!  ...you stress me out a bit.
But I do guess you do get your point across.
Pitter

[jmjm530]

Glad you're getting another opinion -- no such thing as too much information IMO.
Short of waving a wand and making the virus go away, it should be gratifying you have so little liver damage. Hopefully this will buy you all the time you need to make informed choices on how to proceed -- and don't look at the Milk Thistle as "feeble". Remember, the old Hypocratic Oath -- "Above all, due no harm". Presently, you have no damage. Use that as a guage on how you proceed.

All the best,

--Jim

[pitter]

Thanks Jim.
you have spoken to me a few times and I appreciate it... I remember what you said you went thru w tx ... it is soo all over the board on this site , about whether to treat or when...I allready have mild depression and anxiety, insomnia (pretty bad all the time), and alot of meds make me vomit... so I am really dragging my feet about doing anything about it... I have had a biopsy, and have seen a gastro doc.   And I did call the hepatologist ,
Dr.Wu  at UConn. Medical  Center, Farmington, CT.   Any one familiar with him?? I would appreciate any feedback on him.
I am waiting for a call back for appt.
do you know, does the amt. of damage tell anything about how long we may have had the disease?
hope you are well..thanks
Pitter

[jmjm530]

Very hard to figure out how long you've had the virus based on liver damage alone.

I am more familiar with hepatologists in the Boston and New York areas, and would be happy to give you some names there. As far as Dr. Wu is concerned, do you have a first name and/or address?

-- Jim

[FlGuy]

Think it's George Wu. div gastro/hepatology, UCONN

[jmjm530]

I did see a "George Wu" at UCONN but it doesn't appear he's a hepatologist? Did you find a bio on him? I do think it's important to see a hepatologist at this point.

[Forseegood]

I think what is going on here is that some of these substances *can* help you feel better (from where I sit, it looks like it depends on the patient AND the substances, just like the results of treatment can be all over the place, these results can be are all over the place too)....super anti-oxidants, etc, what have you...

Maybe even help you with inflammation issues in the blood, and those of us who have this disease have low level inflammation issues due to an ongoing infection, that much we do know. Just recently, I stopped my supplementation regime, which I always do after so much time, to just clean everything out, etc....anyway, I stopped for about 3 weeks...I was so caught up in all my stuff I do, holiday things, work, etc...that I kinda forgot to start up again. So, one day I thought, I should start this up again, pain in the butt that it is sometimes. I'm so fuzzy sometimes that I really kind of forgot that I had started up again, lol...just forgetting all over the place lately...

Well, a few days later I just felt better, a little more energy, more "myself." Thought, wow, I feel better, maybe it's the cooler weather. Then it occurred to me that I started up my regimen again, and that's maybe why. So this new understanding wasn't on any conscious level at first, because as I said, I forgot that I started up for awhile.

This dang regimen does make me feel better....and i have seen, in the past, it lower my alts. If people want to think I'm all wet, and it's all in my head, that's okay, we're all entitled to our own opinions. But I am going to keep swallowing these things in my own best interests, as I see them.

My problem with the Lloyd Wrights of this world (and, admittedly, I am no expert on him, just perused his website once or twice) is that they are throwing all these so called "facts" out there, which are largely anecdotal and unsubstantiated. And some of these statements, to me, seem overblown.....even *inferring* that these substances can "cure", if I'm not mistaken.

I feel more comfortable with some of the products I use, who are just out there (for profit of course, they gotta pay their rent and overhead just like everybody else) but don't make all these overblown claims. Still not discounting the fact that Lloyd Wrights whatever might work on some level, I don't know...but I'm just leery of marketing schemes, and overblown statements.

[Forseegood]

I think what is going on here is that some of these substances *can* help you feel better (from where I sit, it looks like it depends on the patient AND the substances, just like the results of treatment can be all over the place, these results can be are all over the place too)....super anti-oxidants, etc, what have you...

Maybe even help you with inflammation issues in the blood, and those of us who have this disease have low level inflammation issues due to an ongoing infection, that much we do know. Just recently, I stopped my supplementation regime, which I always do after so much time, to just clean everything out, etc....anyway, I stopped for about 3 weeks...I was so caught up in all my stuff I do, holiday things, work, etc...that I kinda forgot to start up again. So, one day I thought, I should start this up again, pain in the butt that it is sometimes. I'm so fuzzy sometimes that I really kind of forgot that I had started up again, lol...just forgetting all over the place lately...

Well, a few days later I just felt better, a little more energy, more "myself." Thought, wow, I feel better, maybe it's the cooler weather. Then it occurred to me that I started up my regimen again, and that's maybe why. So this new understanding wasn't on any conscious level at first, because as I said, I forgot that I started up for awhile.

This dang regimen does make me feel better....and i have seen, in the past, it lower my alts. If people want to think I'm all wet, and it's all in my head, that's okay, we're all entitled to our own opinions. But I am going to keep swallowing these things in my own best interests, as I see them.

My problem with the Lloyd Wrights of this world (and, admittedly, I am no expert on him, just perused his website once or twice) is that they are throwing all these so called "facts" out there, which are largely anecdotal and unsubstantiated. And some of these statements, to me, seem overblown.....even *inferring* that these substances can "cure", if I'm not mistaken.

I feel more comfortable with some of the products I use, who are just out there (for profit of course, they gotta pay their rent and overhead just like everybody else) but don't make all these overblown claims. Still not discounting the fact that Lloyd Wrights whatever might work on some level, I don't know...but I'm just leery of marketing schemes, and overblown statements.

[FlGuy]

Didn't do a lot of looking, just this far:

http://www.uchc.edu/md/Gastro/index.htm

[FlGuy]

I don't know if it's the same Wu in Pitters reference. Just a guess on my part.

[alagirl]

I am terrified of the sides. Don't think I can take it.
------------------------------------------------------------------------------------

On Friday when I was checked into the ER, our nurse was a beautiful girl about my son's age who asked a lot of questions about my tx.  Her father, it turns out, had been infected twenty years ago and had gone through three or so earlier unproductive treatments, not the current offerings.  I invited her to our med board and she teared up and looked away.  Her father had some sort of encephalic hep incident or something after having a tip installed? - I know that doesn't make much sense, try to keep in mind that not much oxygen was getting to my brain courtesy of no rbc's on Friday - and he  had died quite recently.  

The sides don't really scare me.  Losing my liver does.  Renal issues from hep c scare me, issues with my brain from hep c scares me.

[Forseegood]

forgot to say in my post...and it's probably important and I always try to, that I don't advocate these things "instead" of treatment...if all goes well, be starting at the first of the year. But there are a lot of people out there who have multiple failings at conventional treatment, and they might take a look at things that might make you feel better as we're all waiting for the better drugs to become widely available.

[pitter]

Thanks everybody for your input,  I will look farther into WU...(he he )..I asked the people who answered the phones at Uconn if he was in fact a Hepatologist, they said yes...but that he was very busy and his practitioners would be as helpful..I said "no I will wait , I want to see an actual hepatologist" they took my name and said they would call me to schedule an appt. cuz he is booking so far out.That was a week ago , haven't heard anything from them yet...I just did a search on line for a Hepatologist near Middletown Ct. which is where I live.
well as faras the supplements go ...I don't know what to take ,I have milk thistle, I take b 12 someyimes for energy...
Got any  suggestions , it has to be simple for me to stay with it...
alagirl, what is a "tip installed"? and what is renal issues? and what brain issues are you talking about? if you please? thanks
bless you all.
Pitter

[Willy50]

This is an older thread. I grimaced when it first came out.  There were actually about 5 of them and some of the responses were a little over the top.  I feel that sometimes people get a little too proacative in refuting any alternative treatment or therapy.  I have bought product from Lloyd Wright, visited his site many times, read his books and see him as a useful source of information.  I don't see Lloyd as omnicient or a guru.  I don't think he is "wright" about everything that he writes about.  I don't think that anyone is able to always predict the best treatment for HCV.  Right now we have doctors who are telling their patients to wait till better treatments are developed and we have doctors who are treating one and all.  Who is right?

Lloyd provides a source of information that is decidedly anti-treatment.  I think some of his arguments have some validity.  I think some of his anti treatment arguments go too far but they still provide a needed balance to a billion dollar industry which sells treatments to all levels of liver damage.  It's OK that pharmaceuticals market their drugs.  It's also OK that Lloyd sells whatever people wish to buy from him.  Ultimately it is the buyer who must beware.  I also have to say....... it's OK for people to complain or argue against using alternatives.  (Is it OK to argue against TX? : ))That's what boards are for; free flow of information.  I don't think the information is aways true or accurate and so people also have to be careful about what they choose to believe.

I've bought Thymus several times from Lloyd.  I've bought Milk thistle from Lloyd.  My LFT's did drop some but I happen to believe that since there were many other factors involved it would not be safe to claim that it was due to taking the product.  I am aware of one person who claimed his viral load increased while on thymus.  I could not tell that it did anything for me in terms of how I felt.

Yes, of course the information which Lloyd provides is anectodal.  I believe that much of it still has some value.  This board is also very largely anectdotal information and it still serves a great need.  Should this board be discounted for the same reason?  Lloyd has been selling herbs, vitamins and such back when the SVR rate for geno 1's was probably in the teens.  For me it makes more sense to try to take care of oneself for a few more years until the SVR rate for us geno 1's becomes better than a 50-50 proposition.  Whether one buys anything from Lloyd I still think his site is an interesting read.  I may not always agree with him but I often find that the site provides living breathing and anectdotal accounts of what happens to (some) people who suffer some of the black box warnings which are prominently displayed on the containers in which TX dosing is supplied.  We understand things differently when we read the warnings than from when we read about (once again "anectdotal") accounts where people suffered serious sides from those drugs.

As the cure rate goes up with TX it may make progressively less sense to try alternatives.  It might have made a lot more sense do do alternatives back when the treatment success rate was quite low.  I assume I will treat some time in the next few years.  Until that day I will continue to read up on diet, vitamins and life style choices which could mitigate damage while I await a shorter and more effective treatment.  To me there is nothing wrong with reading and trying to understand both sides.  I am in no way recommending anyone take any particular drug, vitamin, or supplement.

I happen to agree with Foreseegood that there is a distinction between simply feeling better, or improving ones blood scores and the outright expectation of becoming "cured".  If one is able to aleviate some symptoms or improve ones LFT's might one consider some aspect of treating with alternatives and improvement?  

One final disclaimer; I "know" people (only 2) from online who claim to have cleared using alternatives.  I also am aware of another case in which one persons LFT's went sky high an alternatives.  1) research what you intend to do, 2) MONITOR your results.  Frankly....... I think that many people are not capable of doing either (I think I may include myself in that group.  ; ) )

TIP is a sort of bypass of the liver.  When a liver becomes so damaged that it stops filtering, it caused higs blood pressure.  This causes ascites and increases chances of bleeds.  The TIPS reroutes at least some of the blood, thus lowering the blood pressure.  Unfortunately it also means that the blood is less filtered.  This is a very basic description but I hope it suffices.  

The "brain issues" refered to are probably elevated ammonia which compromised livers have trouble removing from the blood.  A tips procedure bypasses the liver and so I would imagine that one might automatically have these issues. (and for which there are diet and RX {lactulose] solutions for them).

best,
Willy

[pitter]

thank you sooo much Willy...you made alot of sense...as much sense a s can be made with this uncontrollable illness...and I agree with you...in as much as I know my self...which at this point is not alot...there are alot of gray areas....but still everything has it's own place of importance...thank you for your time and knowledge and,
thank you for the explanations...I appreciate it alot.
Pitter