Aa
Lloyd Wright vc Pegasys
Anyone experienced with Lloyd Wright's "natural" treatment of organic live thymus, milk thistle, NAC, etc. His book claims outright riddance of the virus. I'm a 1a hep c with a core b. I would like to hear any success stories AND those that failed too. Please indicate amounts ingested and duration of treatment. Thanx.
With regard to Lloyd Wright,he is a classic and succesful exploiter of ignorance,deperation and fear.
Anyone considering buying his products should be aware,
a)It is possible(in my opinion most likely) that he never had Hepatitis C.His business associatep Melody Beattie has stated that at her behest Wright reccently had a test that revealed he was negative for antibodies (HVC).
If negative for antibodies he was never infected.I have checked this with a professor of hepatology.
b)The document on his site concerning interferon by Gary L Davis is undated.It is so old it states that the 'possibilties of Ribavrin are just begining to be explored'
c)The story about his introduction to Thymus appears to have two versions.
In the edition of his 'book'that I read he claims that his brother Duane who 'exists in a strange way'found a reference to it on the internet.
Subsequent marketing by Beattie claims that Wright was put on it by by the late 'Dr'John Finnegan ND (not MD).
In any event controlled tests have revealed that bovine thymus is a worthless quack remedy and has no benefit in the treatment of hepatitis C.
d) His 'book' claims he took interferon,but by his account not precribed by a doctor-he went out and bought it.Just walked in to the local pharmacy maybe.
e)Until taken to task his site had a 'Status Non-Profit' claim on the menu.This was deceptive.The non-profit referred to a seperate incorporation he had established where site visitors were invited to donate money to have Wrights products distributed to others who could not afford them.He appeared to confirm in a radio interview that there had been no donations.It was,in my view, a cynical method of getting the 'Non-Profit'message onto his home page.
There are numerous other unsatisfactory claims-too many to list
Close examination of his message board reveals poor deluded people many obviously struggling to raise money to pay this man.
Typically there is a strong evangelical theme 'God bless you LLoyd'
You pay your money and you take your choice-with Uncle Lloyd there's a whole lotta paying to be done.
Anyone considering buying his products should be aware,
a)It is possible(in my opinion most likely) that he never had Hepatitis C.His business associatep Melody Beattie has stated that at her behest Wright reccently had a test that revealed he was negative for antibodies (HVC).
If negative for antibodies he was never infected.I have checked this with a professor of hepatology.
b)The document on his site concerning interferon by Gary L Davis is undated.It is so old it states that the 'possibilties of Ribavrin are just begining to be explored'
c)The story about his introduction to Thymus appears to have two versions.
In the edition of his 'book'that I read he claims that his brother Duane who 'exists in a strange way'found a reference to it on the internet.
Subsequent marketing by Beattie claims that Wright was put on it by by the late 'Dr'John Finnegan ND (not MD).
In any event controlled tests have revealed that bovine thymus is a worthless quack remedy and has no benefit in the treatment of hepatitis C.
d) His 'book' claims he took interferon,but by his account not precribed by a doctor-he went out and bought it.Just walked in to the local pharmacy maybe.
e)Until taken to task his site had a 'Status Non-Profit' claim on the menu.This was deceptive.The non-profit referred to a seperate incorporation he had established where site visitors were invited to donate money to have Wrights products distributed to others who could not afford them.He appeared to confirm in a radio interview that there had been no donations.It was,in my view, a cynical method of getting the 'Non-Profit'message onto his home page.
There are numerous other unsatisfactory claims-too many to list
Close examination of his message board reveals poor deluded people many obviously struggling to raise money to pay this man.
Typically there is a strong evangelical theme 'God bless you LLoyd'
You pay your money and you take your choice-with Uncle Lloyd there's a whole lotta paying to be done.
at this point in time, none other to effectively erradicate HCV than the chemical protocol. You don't want to jeopardize your feeling good status, but you also do not want to jeopardize the 18 yr old's gift.
\GL
\GL
Okay, I see that you all dislike this guy and perhaps his remedies are bogus. I agree, I see no testimonials or proven trials except for what he says. I want to thank those that responded. Your feedback alleviates a lot of questions in my head. I happened across his web page and then a neighbor lent me his book to read. Thus the posting of the original question about him. I'm new to this forum so I haven't read all the blogs posted. I do see a lot of people undergoing chemical treatments, some are off and some wondering if they will relapse or not. Only Mike Simon's response to an earlier question was positive. My next visit to my post-liver transplant surgical team is in early May and I'm sure they want to start me on a peg/something program. I'm unsure if I want to or not. After nine months of healing I finally feel great and don't look forward to being jacked up for a year, or longer, as a rememdy. My next question is, is there anyone out there that has undertaken an alternative method and has had it work with a G-type of 1a? If there is promise I'd rather explore it than stick myself full of chemicals. Basically, what alternatives do I have besides the peg/something treatment?
and always stay on top of your doctor, no matter how much of a hotshot it seems to be in the Hep C community.
My riba was lowered in Oct and was not increased again until Jan, when I reminded the PA that she hadn't. She also forgot that I did not start Tx with them and the 12 wk reading was actually the 8 wk reading with THEM, did not keep accurate count of what Tx wk I was on, and so on.
STAY on TOP, always.
My riba was lowered in Oct and was not increased again until Jan, when I reminded the PA that she hadn't. She also forgot that I did not start Tx with them and the 12 wk reading was actually the 8 wk reading with THEM, did not keep accurate count of what Tx wk I was on, and so on.
STAY on TOP, always.
Without knowing all the details of your condition and your tx, it sounds like the care you received was sub-optimal - especially given your histological state.
Reasons I say this include:
- your were found to not yet be clear at week #12, yet weren't tested again until week 24. Then your tx was only extended 6 weeks beyond the standard 48. What, if for example, you didn't actually clear until week #23? That means your tx only extended 31 weeks beyond the point of serum clearance. Even a patient with less liver damage who happens to be clear at week #12 ends up going longer than that - for a total of 36 weeks beyond the point of clearance to week #48. Someone with your level of damage has lower SVR odds to begin with and therefore would benefit the most by extending treatment well beyond the standard 48 - to say, for example, 72 weeks.
- you say your doc had you skip a week occasionally because of low blood counts, yet he had you on Neupogen and Procrit nearly the entire tx. Given that dosage reduction - and even more so dosage skipping - is murder on SVR rates, why didn't he do a better job of proactive intervention with the Neupogen and Procrit to keep you full-dose? Or were your dose skips related to something else (eg - low platelets, other sx's, etc)?
- ANC (Absolute Neutrophil Count) isn't 'the whole picture of bloodwork', by any means. For those on tx it is related to neutrophil level and white count - (both of which figure into the calculation which makes up ANC). Your level of 500 needed to be monitored and treated via Neupogen. But if you responded by taking the Neupogen (which the vast majority of patients do), then your ANC should never have been cause for dose reduction by itself - most especially if the doc was proactive and kept ahead of it.
- same goes for your red count. If you were on the Procrit, why did he lower your riba? Did he allow the red rates to fall too low before intervening with Procrit - thereby constantly having to try and play catch-up?
You need a doc who is going to work as hard as you in trying to keep you at full dosage to try and help you acheive SVR. And to keep you on the meds a long enough time to give you the best odds of getting there.
You may want to seriously consider a second opinion and/or new doc (hepatologist, if available) before commiting to another round of tx with your current doc.
TnHepGuy
Reasons I say this include:
- your were found to not yet be clear at week #12, yet weren't tested again until week 24. Then your tx was only extended 6 weeks beyond the standard 48. What, if for example, you didn't actually clear until week #23? That means your tx only extended 31 weeks beyond the point of serum clearance. Even a patient with less liver damage who happens to be clear at week #12 ends up going longer than that - for a total of 36 weeks beyond the point of clearance to week #48. Someone with your level of damage has lower SVR odds to begin with and therefore would benefit the most by extending treatment well beyond the standard 48 - to say, for example, 72 weeks.
- you say your doc had you skip a week occasionally because of low blood counts, yet he had you on Neupogen and Procrit nearly the entire tx. Given that dosage reduction - and even more so dosage skipping - is murder on SVR rates, why didn't he do a better job of proactive intervention with the Neupogen and Procrit to keep you full-dose? Or were your dose skips related to something else (eg - low platelets, other sx's, etc)?
- ANC (Absolute Neutrophil Count) isn't 'the whole picture of bloodwork', by any means. For those on tx it is related to neutrophil level and white count - (both of which figure into the calculation which makes up ANC). Your level of 500 needed to be monitored and treated via Neupogen. But if you responded by taking the Neupogen (which the vast majority of patients do), then your ANC should never have been cause for dose reduction by itself - most especially if the doc was proactive and kept ahead of it.
- same goes for your red count. If you were on the Procrit, why did he lower your riba? Did he allow the red rates to fall too low before intervening with Procrit - thereby constantly having to try and play catch-up?
You need a doc who is going to work as hard as you in trying to keep you at full dosage to try and help you acheive SVR. And to keep you on the meds a long enough time to give you the best odds of getting there.
You may want to seriously consider a second opinion and/or new doc (hepatologist, if available) before commiting to another round of tx with your current doc.
TnHepGuy
been there done that. lloyd wright sells frozen thymus that you "MUST" have to get well. its costs hundreds of dollars a month to take. not counting all his other products. he is helpful to potential customers to the point of giving them price breaks or even some "freebies." however if you disagree with any of his ideas he gets nasty in a hurry. steer clear.....
Thanks so much from all of you. Knowing you're there really helps. I didn't post a much while doing my tx, but I looked in a lot. I was on what I believed were full doses. I took 1000 mg of Ribavirin and the interferon was a full vial, but you know I can't remember what the dose was. Funny I can't remember a lot of things these days. I told Dr I felt like my brain had been fried. However I only felt like this after I was through. I wasn't clear at 12 wks, and didn't test again until 24 and was clear then. I skipped a week occassionaly so that my blood counts could recover, sometimes we doubled up on the neupogen. I took weekly CBC the whole time. My Dr watched the absolute neutrophils mostly. Said that is the whole picture of blood work. Normal is 1500 - 2800. I usually was around 500, sometimes lower. We did reduce the Ribavirin to 800 mg for a couple of weeks, but increased it back, I think that was during the first 12 wks. I didn't have a lot of sides except hair loss, itchy skin, headaches. But I worked the whole time missing only a couple of days. I see the Dr again on Tuesday, so we'll see what they have to offer.
Thanks again for being there. I have seen you all help a lot of people including me through this. God bless you all.
Thanks again for being there. I have seen you all help a lot of people including me through this. God bless you all.
I'm very sorry to hear of your relapse.
Your level of liver damage should have been reason enough for your doc to extend you to 72 weeks in your initial tx. Your chances of viral clearance diminish as the rate of liver damage increases. And the longer tx regime could give your liver more of a chance to halt or perhaps even reverse some of the existing damage.
Also, you didn't mention if you were clear by week #12, or what dosage levels of interferon and riba they had you on, or if they were lowered at all during the course of tx. These all are factors that could go into lessening your SVR chances. And would represent more reasons to extend.
As far as other existing options, daily Infergen might be one. Another might be to switch you to Peg-Intron and have you go the full 72 weeks (or longer, depending on clearance time, etc). There are also various clinical trials being held throughout the US. There might even be one accepting patients in your general area. Also, as 'layla' has mentioned, interferon maintenance is a consideration. Given the level of histological damage you are at, I would think it prudent that you begin some form of tx regime.
May God's blessings and mercy be upon you.
TnHepGuy
Your level of liver damage should have been reason enough for your doc to extend you to 72 weeks in your initial tx. Your chances of viral clearance diminish as the rate of liver damage increases. And the longer tx regime could give your liver more of a chance to halt or perhaps even reverse some of the existing damage.
Also, you didn't mention if you were clear by week #12, or what dosage levels of interferon and riba they had you on, or if they were lowered at all during the course of tx. These all are factors that could go into lessening your SVR chances. And would represent more reasons to extend.
As far as other existing options, daily Infergen might be one. Another might be to switch you to Peg-Intron and have you go the full 72 weeks (or longer, depending on clearance time, etc). There are also various clinical trials being held throughout the US. There might even be one accepting patients in your general area. Also, as 'layla' has mentioned, interferon maintenance is a consideration. Given the level of histological damage you are at, I would think it prudent that you begin some form of tx regime.
May God's blessings and mercy be upon you.
TnHepGuy
I am really saddened to hear you news. I have seen others switch tx and that has worked but I am not up on the detail. Double dose did it over with a longer stronger tx and that has worked. I've also read about infergen but again I am not so up to date on that. I do wonder if the tx helped the condition of your liver at all. Perhaps maintenance is an option also. I'm sure others will chime in soon. LL
Lloyd Wright
Are You talking about the guy making money off of sick and dieing people?????
I know a Lloyd Wright and have communicated with him Via Email...He could not produce any studies worth there salt.. to substantiate his claims, also if you read his story, he never had a biopsy strange how did he know his liver improved.............Yet he thinks it OK for you to sell your house, borrow from family and friends to buy his Products.
Yea I have heard of the guy............
TonyZ
Are You talking about the guy making money off of sick and dieing people?????
I know a Lloyd Wright and have communicated with him Via Email...He could not produce any studies worth there salt.. to substantiate his claims, also if you read his story, he never had a biopsy strange how did he know his liver improved.............Yet he thinks it OK for you to sell your house, borrow from family and friends to buy his Products.
Yea I have heard of the guy............
TonyZ
mb..i moved you up the board..not sure if anyone will see you down there..really sorry about the news...there are others here that will be able to give you their future plans...wish you the best
memphisblues
(05-Jan-05) . Sorry to see so many 1's out there. I'm back again. I went through 54 weeks of Pegasys/Copegus combination. Had to take Procrit and Neupogen every week,after first month because low blood counts. I was clear at completion. I just went back for my 3 month follow up and it's back. I began as 1a, stage 3 virus, and biopsy revealed stage 4,chirosis, compensated liver disease. I go next week to discuss other options.
Any Ideas what options are available?
memphisblues
(05-Jan-05) . Sorry to see so many 1's out there. I'm back again. I went through 54 weeks of Pegasys/Copegus combination. Had to take Procrit and Neupogen every week,after first month because low blood counts. I was clear at completion. I just went back for my 3 month follow up and it's back. I began as 1a, stage 3 virus, and biopsy revealed stage 4,chirosis, compensated liver disease. I go next week to discuss other options.
Any Ideas what options are available?
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