And as, JRW, hwlatin and others said we only have very scant annecdotal evidence from people with a dx of sarc on Trevor Marshall's site.

We know that help will not come from some undiscovered-by-the-Westerb-World-yet-fully-proven-and-undisputable-study. We,unfortunately, are at the forefront of what is happening in the tx of these complex infections, so we know and accept that we have to consider and try out things that are based on theories, not proven facts.

But we have to use our best judgements to decide what is even worth trying. I am not qualified enough to assess whether Trevor Marshall's theory will be helpful to us, so I have to use other clues to decide if there is any reason to get even a bit enthused.

One of these "other ways" is trying to get a feel for whether there is "internal logic' in the theory, as far as I can tell of course.

Another way is to try and assess whether I think the person presenting the theory is trying to benefit from what s/he is pushing, through money or ego.

Last but not least, I try to decide what my gut feeling is twrds the person, using indirect clues. It's a bit harder for me because I am French so I often have knee jerk reactions which come from a cultural bias, I keep having to try and adjust to corresponding with Americans.

FWIW, I am concerned with Scott's "I have a mission" attitude and even more with his "get out of the way if you are too ignorant to understand what I am saying". I am also concerned with his "I was already 85% better now after a few days on Benicar I'm 90% better".

BUT, as I said before I read Marshall's site ages ago and I am interested.

BTW, I never got the impression that Marshall himself was claiming that Benicar was a cure-all.

BBTW is Marshall Australian?

It was the first time I really realized how bad the situation was. There could come a day that my sons and I might be denied care. It is as much our responsibility to insure the protection of our doctors as they are.

I meant they don't recognize the value of Marshall's work...I didn't mean they don't take Lyme disease seriously.

quote:

---

Originally posted by free2reckon:
I am a little disappointed in your skepticism of my opinion, it confuses me, but I do respect it.

---

Scott,
I respect your opinion very, very much. However, our daughter was undiagnosed for 2.5 decades, since early childhood. I had to learn to be very resourceful and to figure things out for myself. Consequently, I have always regarded all of our medical consultants as advisors -- out of necessity.

If I had not gone to the effort to do my own research, I doubt that she would have survived long enough to have finally been diagnosed properly with LD -- seriously. I honestly don't think that she would have survived this long. We had to pick our own path very, very cautiously for many long years, without much medical help at all, and in spite of a lot of misleading, bad medical advice.

You will be glad to know that she, too, is reading and studying all of your topics, but she doesn't have high speed internet access, so it's harder for her to keep up with it as easily as I can. She is planning to come here to visit next week, just so that we can spend some time together at the medical library collecting as many of the complete articles as we can find there from some of the better abstracts which we've been discovering, thanks to Your valuable help.

I had found the sarcinfo-dot-com website a long time ago, even before Barb (bpeck) first posted about it here at LymeNet. Alan Cantwell had sent me info about it when he first published his article there. I failed to appreciate it back then though. I also failed to appreciate the sarcinfo website when Barb first pointed it out to us, too.

Only because of YOU, am I now taking the time to delve into all of this mind-boggling material. Until now, I couldn't see how it might relate to our daughter's problem enough to warrant spending the necessary amount of time to learn about it.

We have always been ultra-conservative about jumping into anything new therapy until we have researched it for ourselves very thoroughly.

I am glad that you consider the sartan family of drugs to have such a good track record of safety. That's VERY reassuring and encouraging!

Furthermore, I agree with you that even if there are risks to Benicar, that one must weigh those risks against the status quo antibiotic protocols and also against all of the other alternative natural therapies. Right now, Benicar is at the top of our list of potential therapies under consideration to pursue next.

Please try to understand that most of the "contrarians" here at LymeNet have had similar experiences to ours. That's why we are all so wary of becoming too hopeful about any new, unproven therapy protocol, no matter how good the theoretical basis for it might appear to be.

It might help you to understand our psyche a little better if you think of all of us as frightened, hurt animals who are likely to try to bite the hand that feeds us. We're just scared of being hurt again, by getting our hopes up and trusting blindly in something which we don't fully comprehend, that's all.

Thanks again for taking so much of your valuable time to try to help us.

PS - For folks who might want to find the other related topic posted by Free2Reckon which I mentioned above (ie., Pathogenesis of Borrelia), here's the link to it:

http://flash.lymenet.org/ubb/Forum1/HTML/024997.html

Response: I never said that they have to practice Marshall's protocol it in 24 hours...I just think they should be investigating it and asking questions...which they don't appear to be doing. As I've said before, I fear they are not recognizing the value in Marshall's work. Most MDs don't have a strong background in immunology as I do, their ignorance regarding the pathogenesis of this disease causes them not to appreciate this breakthrough work.

A. I am sure some of them are studying it. Just because they are not coming to the same conclusions does not mean they are incompentent. Alot of doctors dont have an education in nutrition either and have difficulty in reading CBC's. This includes imunologist too. So what is your point. They all have to work together. I have been told Marshall is very head strong, maybe that is why this might be difficult.

R: Marshall's protocol doesn't call for Benicar therapy to be added to intesive abx tx...it recommends withdrawing abx therapy prior to Benicar tx.

A: It means flushing the current antibiotics out of your system. This could take up to 72 hours. What would the impact be then.

R: A very significant amount of time is what most will likely get!

A: While none of us like to be sick, time is not necessarily a bad thing. Time might be the difference between life and death in both directions.

R: Didn't you give them Marshall's work showing that the testing has already been done?

A: Your assumption is that everyone that questions the plan did not read the plan. That is absolutly false. The test group is too small and does not reflect enough diversity. It would never pass mustard with the FDA.

R: Children have already used Benicar therapy for sarcoidosis with wonderful results.

A: And that is a big risk. Pediatrics is a whole different ballgame. I would bet the manufacturer would not want that to be done. It opens them up to alot of risk.

R: So, you are saying that when all of the testimonials begin to roll in about the benefits of Benicar, you'll wait for years until the clinical studies by Sanyko are finished, allowing them to market Benicar as a treatment for chronic Lyme disease, before you'll begin Benicar therapy?

..mean while many LLMDs and other MDs will have been using Benicar and you'll still wait for the FDA approval for this claim?

A: I might not wait for FDA approval, before I would start using it, but I would want to see more sucess stories from different types of cases to be sure of its safety. Trust me when I say this, I hope it does work. I would like nothing better than to see the suffering to stop. I just dont want to see anyone hurt in the mean time. I think we all know about that all to well.

R: Not nearly as important as Marshall's work...it's a major breakthrough!

A: Clearly you have not read other researh studies. Marshall is not the only one going down this path.

I am concerned about this thread. New people to Lymenet might not understand the risks associated with any of these plans. I really do have a hard time believing your statements about the progress you have made. Your's and penny's statements are over the top and that concerns me.

As I said earlier, I nearly died from using medication for purposes other that what it was meant for. The doctor at the time, was much like you, sounds good lets try it. I feel that it is important that people be made aware of all of the risks, and I will continue to make that point.

It's not unusual for things to catch on slowly. The other Marshall, who went to the same school that Trevor did, who discoverd the bacterial cause of ulcers had a horrible time getting people to listen as I'm sure you know. He had to infect himself to get people's attention.

And what's crazy is that even today, all these years later, it's still more common for doctors to prescribe Tagement than it is to prescribe antibiotics for ulcers.

It takes time. You're breaking ground. What I like about the internet is that word spreads fast, and doctors can't ignore things the way they used to. So I think we've just got to be patient, but persistent. Also think it's great that you're broadcasting this as widely as you are with the energy you have, because it gets noticed. You'll get criticism for that, but so did the ulcer Marshall. So does anybody who stands out from the crowd. I do believe this is a breakthrough that deserves a look. Try not to be upset if others don't see it that way. Everybody's different. Some people are cautious, some people jump right in. I learned from having a very smart, but very cautious child, that pushing them doesn't help. They've got to observe, then decide on their own when to participate.

I know of a number of doctors who are very interested and intrigued. And they're not lyme specialists. They're gps, internists, immunologists, and infectious disease docs. I've got a number of friends who are going to start the protocol, for the same reason I did. There are aspects of this treatment that perfectly address their own illnesses. If this really works, the medical community will take notice because it's easy and it's inexpensive for people to start getting well. Just like the ulcers folks. And doctors could feel successful that they're helping patients. The smart docs will catch on. And because of the internet, when people hear other people are getting better, they'll find the doctors who'll help them.

penny

I swear that I am reporting my experiences with Benicar exactly as they are occurring. The good and the bad.

I've reported the pain relief, the fatigue, the heart kerthumping, the feeling of depressurization in my head, and relaxing throughout my entire body and brain, and improvd mood. And now the itching that started last night, and the improved energy I feel this morning. This is all the truth.

I'm honestly reporting how I feel. The only other time I've had such noticeable, immediate results was when I started antibiotics. It was life changing. But didn't last forever, and the antibiotics were hard on me. This definitely feels life changing. Even more so than the antibiotics did, but time will tell whether it lasts.

1) Scott, you are not being realistic. You just started benicar 9 days ago, and a few others are trying it. You need to focus on the important, not the urgent. The urgent is "right now! right now!" The important is, this theory looks very good to you, so let some lymies try it out and see what happens. Anecdotal reports will cluster on a bellcurve in a way that will either be convincing or not. You cannot expect all the doctors to instantly jump on this protocol. It's just not reasonable, and you are stressing yourself out for no reason, and getting frustrated for no reason. Be glad you feel better. You are not responsible for the entire lyme community, anyway. Your only responsibility is to put out the information, to say something helped you and why you believe it helped. Those who are interested will pursue it, those who don't, won't. Everyone has a right to their own lives and decisions in their own time. I learned this with my mild hyperbaric chamber. I still post about it sometimes. But I hit a wall because of the (I am certain incorrect) standard response from all the $-making multichamber centers/doctors that only 2.4 ata will work. If someone gets interested in mild hyperbaric, and they check with a clinic/doc who has a chamber, they are talked out of it. They don't think for themselves. They could at the very least hugely improve their quality of life. Well, they are not my responsibility. I offer the information, and those who follow up on it--there isn't a person on our lyme/mild hyperbaric list who doesn't report in amazement about the immediate improvements they see with the home chamber. I could rant against the doctors who block this information with their "lies" that they believe--but really, who cares? God helps those who help themselves, as the old cliche goes.

Calm down. You have sounded a bit manic lately--manically happy, and now manically angry. Rome was not built in a day...

I am editing this to add in that I think you have done a very good job of getting the information out, and now you have to wait for the seedlings to grow into plants and then trees--if they are meant to.

Nelly: The French are like everyone else ie ethnocentric, they have been conditioned by their culture to interpret certain signs through their own cultural filters. Being aware of this doesn't make one immune to it. This is why I mentioned it, but you prbbly do not have the "necessary background" to understand these things

Scott: Haven't you read Marshall's publications either?

Nelly: Scott, I have read all of them, but how must I say it for you to understand what I am saying? I know what he has written, I know it SOUNDS INTERESTING but does it make it "TRUE"? (I am using a word you seem to have a particular fondness for. That's all.

Scott: "I am qualified to determine if Marshall's work is worthy or not, but you and others critisize me for doing so.

Nelly: No, Scott, for being too easily convinced! I can't pass any judgements on the value of the Marshall Protocol for Lyme but I can tell you are making sweeping statements with very little data to back it up.

Scott: What indirect clues?
See just above, how rigorous a person is in their thinking.

We would all like to be bushy-tailed and fancy-free but...

Scott: I've worked hard to explain thing in simple and concise ways...if folks have questions I address them the best I can...

READ MY LIPS: we UNDERSTAND we are just NOT SURE you have enough EVIDENCE to be so affirmative, hence the VOLUME of posts on your threads!

Nelly

quote:

---

Originally posted by nellypointis:
Trevor: Nelly, I always was under the impression that the French were open-minded to new ideas...or is it that they are contrary to anything American?

Nelly: The French are like everyone else ie ethnocentric, they have been conditioned by their culture to interpret certain signs through their own cultural filters. Being aware of this doesn't make one immune to it. This is why I mentioned it, but you prbbly do not have the "necessary background" to understand these things

Trevor: Haven't you read Marshall's publications either?

Nelly: Trevor, I have read all of them, but how must I say it for you to understand what I am saying? I know what he has written, I know it SOUNDS INTERESTING but does it make it "TRUE"? (I am using a word you seem to have a particular fondness for. That's all.

Trevor: "I am qualified to determine if Marshall's work is worthy or not, but you and others critisize me for doing so.

Nelly: No, Trevor, for being too easily convinced! I can't pass any judgements on the value of the Marshall Protocol for Lyme but I can tell you are making sweeping statements with very little data to back it up.

Trevor: What indirect clues?
See just above, how rigorous a person is in their thinking.

We would all like to be bushy-tailed and fancy-free but...

Trevor: I've worked hard to explain thing in simple and concise ways...if folks have questions I address them the best I can...

READ MY LIPS: we UNDERSTAND we are just NOT SURE you have enough EVIDENCE to be so affirmative, hence the VOLUME of posts on your threads!

Nelly

---

Dr. Scott Taylor is the first Lymie I had contact with after I recieved my Lyme diagnosis last year. I have gotten to know him through his helpful emails, the support group in his town, and more recently the support group in my town which I started a few months ago.

Those of us that know him, including us on our Lyme Disease Association Board, cannot believe how truly fortunate we are to have Dr. Taylor in our little corner of the world. We are in awe of his intelligence.

He travels anywhere when asked to speak on Lyme Disease-on his own time with absolutely no compensation. He works tirelessly and relentlessly with unbelievable conviction educating, researching and helping people with Lyme. He is one of the most selfless and dedicated humanitatians we have had the pleasure and good fortune to know.

Why does he do this? He certainly doesn't have to! Others feeling as well as he is now would go forward with their life. He has made countless personal sacrifices in our behalf. The reason he does this really IS just pure and simple: he knows this is his mission.

Another advantage to having Dr. Taylor in our Lyme world besides his vast knowledge of the immune system and microbiology-something that practicing physicians, Lyme literate or not don't have-IS the time to research and the diseased body to actually TRY the treatment.

All of his effort is for all of YOU out there! He gains nothing except the satisfaction of helping others to help themselves to feel better and have a better quality of life. He deserves your respect-which is something he has earned from all of us that know him personally.

Thank you, Scott!!!!

Thank you for taking the time to give us benefit of your personal acquaintance with Dr. Taylor. It is much appreciated.

I also would like to suggest for LymeNet members who want more in-depth answers to other specific questions regarding the Marshall Protocol with Benicar that they visit the SarcInfo Phorum and view the list of current topic discussions there. It's a very valuable resource. Here's the link to their webpage.

You know, the people I know who've really helped make a difference are always really passionate about what they're doing. Very single minded and driven.

Sometimes their passion rubs people the wrong way, but without them, we wouldn't benefit from their single minded efforts.

I'm willing to put up with a little strong headedness (not meaning you in particular, Scott) if the dedication and passion they have can potentially pay off for a large number of people.

Two of my dear friends are going to start the protocol next week. They've been monitoring my progress and even called Trevor this morning.

We've all got slightly different manifestations of our illness, but the protocol makes sense to all of us.

We are all so excited that maybe finally we're going to be heading toward a cure. Or at the very least, some major symptom relief and the ability to resume some kind of normal life.

Two of us are going in on Monday to sit down with our Doctor and really spell this out for him, give him Trevor's number so that he can talk with him doctor to doctor.

Scott, I am so grateful to you for telling me about this. If my daughter benefits, you will be my hero forever.

Is he applying for a job or smthng? Your post sounds like a personal reference!!

The point is not about Scott or about how dedicated he is, it's about whether the Marshall Protocol is

a)safe for us chronic Lymies (some with very low BP) to try

b) effective in the powerful ways that Scott makes it out to be, with so much certainty

c) potentially deleterious to people who might not have the immune dysregulations Scott believes we all have (Th1 dominant)

I am not saying Benicar = no potential, I am saying Benicar, let's talk about it, let some people try it (those with high BP for eg) and let's gather more opinions before making claims

I am not writing to split hairs, I just don't want us to get into something without having investigated it sufficiently.

I am very grateful for the people like JR and Penny (and Scott!) for testing it out for us. And to reply to one of Trevor's questions to JR: testing something is not necessarily taking position for the product.

That's all, folks!

Nelly

But what I am now seeing is starting to sicken me. We have people poping up whether real or ficticious atesting for Scott's qualifications. I really dont think that is in debate. What I find real offensive it the hype that is being displayed.

It is one thing to disseminate information to educate the masses. It is another thing to bully people into believing it is something more than it really is. Marshalls work should be able to stand on its own. For the most part I think it does. It is good work.

But Marshall is not God and Scott and Penny you are not prophets. I respect what you are trying to do. It is important that we have discussions on this board like this, but calling people single minded, slow, incompetent just because they dont bow down to the plan is uncalled for.

There have been many people including myself that have shared treatments that have worked for them on here. Most are able to do it in such a fashion that it becomes valuable information. We now have 12 topics on this subject matter spread out on this board, I am not sure how valuable it will be.

I'm not sure if you were referring to me and the use of the word "single minded". I used that word in a good way, not a negative.

I'm not really sure why you're projecting certain positions and beliefs onto me or suggesting that I have strange motives. I'm not trying to be a propet. I'm sharing my experience as honestly as I can, and can't help but share my enthusiasm when discussing it with people who seem interested. I've posted the same thing on other forums, and have gotten much less interest.

I don't have to post, especially if no one wants to talk about it. Believe me, there are more productive things I could be doing right now.

Maybe it would be more useful to discuss the ideas and reactions in the medical world without being judgemental.

Thank you both for exposing me to Marshall's work. I've been so busy with other things that I've been unable to be on Lymenet while this was becoming a hot topic.

This is the most exciting thing I've read in years! Thank you for your patient tutorials and open discussion. So often the really interesting topics such as this are not on the public forums.

The science sure seems to be there. Of course, I'm the slow type who likes to read and fully synthesize things for myself. I've found your explanations and tutorials very helpful in doing so.

BTW Scott, I owe you thanks for a journal article that you passed along to me a while back. It was something I had been trying to get my hands on. I can't begin to tell you how very helpful that was.

Like many of you, I become pretty single minded when I find something this interesting. It is a trait I admire.

[QUOTE]Originally posted by nellypointis:
[B]What bothered me right from the start, is the slightly "manic' tone of Scott's posts.

If you aren't passionate when you believe in something then you will never do much good with it. That stuff about being "manic" is absurd.

A very wise friend of mine often says
"You can always spot the pioneers - they are the ones with the arrows in their backs"

Thank God for our pioneers. Were would we be without them?

It's a tough job but someone's got to do it. Thanks!!!! -tami

quote:

---

Originally posted by robi:
So Jason did the drug you got excited about 5 years ago have lasting effects? what happened?

---

Please note that corticosteroids or prednisone other steroids such as dexamethasone can inhibit the inflammatory cascade we are dealing with. However, remember that the steroids are potent immuno-suppressive agents, which reduces the immunes systems ability to defend itself against our pathogen.

One of the major advantages of Benicar, is that it reduces inflammation and enhances the immunes systems ability to fight infection...not suppress it.

Steroids can't be taken long term...they are catabolic and will lead to many deleterious effects to the body.

Benicar can be taken long term if necessary without any known deleterious effects.

Actually folks, IMO...in the future, we'll see Benicar, or an improvement there of, used to prevent inflammatory illnesses like heart disease...etc. In place of, or in conjunction with, low-dose asprin.

Keep in mind, Marshall's discovery of this inflammatory cascade is a major medical breakthrough in our understanding of the immune system and of the many inflammatory diseases associated with it.

It's truely amazing!

This is an absolutely outrageous thing to say!!! YOU JUST DON'T KNOW.

It has not been used very long and it has only been used on a largish scale in much smaller amounts than the dosages rec by Marshall and Scott. So how the Hell can you make such a assertion?

BTW: I just realised that I called Scott "Trevor" in my last post, sorry for that, my brain has not been Benicar-cleaned up yet!

Thank you for posting such an encouraging message.

I like this quote:

"You can always spot the pioneers - they are the ones with the arrows in their backs"

I'd like to share a personal side of me...by now many of you know I'm a passionate person.

My favorite movie of all time is Mel Gibson's, Braveheart.

My children tell me that my passion reminds them of William Wallace (played by Mel Gibson) in that movie. They bought the DVD for me for Christmas several years ago...I watch it frequently.

Mel Gibson plays William Wallace as a very passionate freedom fighter for Scotland.

I picture myself in a similar role here...I'm sort of a freedom fighter too. I haven't chosen this path...neither did William Wallace (in the movie anyway, actual history is debatable).

This disease has forced me to confront it. I either fight for freedom or succumb to defeat.

With that in mind, I remember my favorite and the most passionate scenes of the movie.

It takes place prior to the battle at Stirling. There, William Wallace is addressing his fellow Scotsmen who are reluctant to fight:

William Wallace: ....you stand here in defiance of tyranny...you've come to fight as free men....and free men you are.

What will you do with that freedom?

Will you fight?

Soldiers:....grumbling say, ...No, against that, we will run and we will live.

William Wallace: ....aye, fight and you may die,...run, you'll live...at least a while.

And dying in your beds, many years from now, would you be willing to trade all the days from this day to that, for one chance....Just One Chance!... to come back here and tell our enemies that they may take our lives, but they'll NEVER take our FREEDOM!!!

Fellow soldiers against Lyme disease, I see ourselves in a similar situation. We can chose to fight or we can be coward and run.

I fight for freedom from this disease. I really have no choice.

Freedom to all,

Scott

quote:

---

Originally posted by free2reckon:
I agree, time will tell...it's just my opinion that it's safe...you don't have to agree with my opinion...though I'm frequently right.

Scott

---

Proverbs 14:12
There is a way which seems right to a man, but its end is the way of death.

But, would just any licorice raise the BP? Or it has to be that and taken in milk?

Just curious...

Licorice might be a good idea in the begining when you're feeling dizzy and concerned about low B, but I don't know for sure. I did consider it when I was feeling woozy. However, Dr. Marshall is not a proponent of licorice or B vitamins in the early phases because they contain some vitamin D.

I think it's really important to get those d tests done in the beginning. See if this is an issue for us. Regardless, vitamin D is involved in the inflammation cycle in some way. It's some kind of steroidal hormone precursor which I can't explain, but affects the parathyroid among other things. It's the rapid drop of the 1,25-D that causes a shift in the hormones, along with suppressing the inflammatory process and activating the immune system, and it's a combination of these things that causes some of the initial symptoms of dizziness and fatigue.

I had one night of extreme itching. Really bizarre, as I'm not even on abx yet. But Marshall says that's a herx from my own immune system finally being freed up enought to recognize the pathogens. That's exciting! Oddly, in the past I dealt with my itching by taking large amounts of b vitamins (licorice), and it stopped the itching. Now, with this latest itching episode, I'm wondering if the B was helping or simply stopping the immune system's ability to respond to the pathogens by increasing the inflammatory cascade? This is Marshall's concern, that a lot of supplements are designed to boost the immune system. In the wrong way. We don't want to suppress it, we just want it freed up to work properly. Boosting it with supplements may actually be contributing to the inflammatory cascade.

quote:

---

Originally posted by pennyhoule:
I think it's really important to get those d tests done in the beginning. See if this is an issue for us.

---

I concur wholeheartedly with Penny about the baseline testing recommended by Trevor Marshall.

I also concur with the analogy that we are all pioneers on the frontier here. We owe it to ourselves and to those who follow after us, and we owe it especially to Trevor Marshall too, to get the recommended baseline testing done FIRST, BEFORE starting Benicar.

I suspect that late-stage Lyme disease might actually turn out to be an "atypical" presentation of sarcoidosis, based on a couple of PubMed abstracts I found about Bb and granuloma in the bone marrow. (I posted those abstracts elsewhere.)

We owe it to ourselves and to other patients, and we owe it to our prescribing doctors and LLMDs, to get the baseline testing (link, below) done because we don't want to put their licenses to practice medicine in jeopardy by failing to do so.
http://www.sarcinfo.com/d-ratio.htm

This is not expensive testing, at least not in the larger scheme of things, especially considering the enormous cost of this disease for long-term treatment and for loss of productivity. Byron posted elsewhere that the cost of the D-metabolite testing is in the range of $280-$350, if I recall, but I haven't checked it myself. I doubt that ACE testing is all that expensive because it's a pretty routine test nowadays.

Here's the link to the discussion "Phorum" at the SarcInfo website, so that you can see for yourself the importance of doing the baseline testing.

http://sarcinfo.com/phorum/list.php?f=1

Free2Reckon might not feel the need to do these tests himself, but I don't think that's good advice for the rest of us to follow.

I worry that our failure to get the important baseline testing done might jinx a potentially beneficial therapy for other Lyme patients later, if too many Lyme patients rush to start using high doses of Benicar without bothering to get lab data first.

I want this idea to succeed just as much as everyone else does who is thinking about doing it. That's why I believe that it's so important that folks, who are really serious about doing the Marshall Protocol, follow Penny's example and get the recommended lab tests done at baseline FIRST, BEFORE starting Benicar.

You were not "here" for the ICHT discussions. This is why many of us are very, very cautious.

A doctor who lost his license in the states, went to Italy to give DNP (in a class with cyanide) to "cure" lyme disease and cancer. This very potent acid, greatly speeds up glycolysis - the pathway that lyme, cancer and malaria take.

However, what NB didn't know/realize...that in doing so...this would seriously further deplete the electrolytes - esp. Mg which is used in both pathways to make ATP.

A young doctor, an M.D., with lyme, went to Italy to be "cured". He had a cardiac arrest and died.

Sooo when anyone comes on this board and claims to have found a "cure", several may challenge this.

I have no doubt, you FEEL better! But...will this treatment MAKE you better? Or is it getting OFF the abx. and taking an anti-inflammatory that will "cure"?

ASA...good old aspirin (an anti-inflammatory)also reduces TNF alpha. But those who take Benicar CANNOT TAKE ASPIRIN...the risk of kidney damage goes up above 300mg. per day.
I fear many will not realize/know this. Many pop ASA without a thought.

As a doctor and researcher who has studied immunology and microbiology, why are you not interested in looking at and discussing my documented research, including of late, the Romanian abstract? Look at the % drop of Mg. It is astounding.

Only when we work TOGETHER...sharing information, seeing how this all fits together, will we truly finish this puzzle and find the safest cure.

quote:

---

Originally posted by Marnie:
But those who take Benicar CANNOT TAKE ASPIRIN...the risk of kidney damage goes up above 300mg. per day. I fear many will not realize/know this. Many pop ASA without a thought.

---

Thanks for the warning about the dangerous interaction of aspirin together with Benicar, Marnie. That's very valuable to know.

Somewhere under one of these topics, someone else posted an excellent explanation about why supplementing with Ca and Mg isn't beneficial until/unless the D-metabolites are balanced first. It was posted for your benefit, following one of your posts, but I don't think you ever had a chance to see it.

If I knew where to look for it, I would post it again for you, but this topic has been progressing so rapidly that it's hard to keep up with it.

Hopefully, maybe someone else will remember where to find it and can "copy and paste" those remarks here for you and for everyone else who might be feeling confused about this.

I think we all recognize the importance of magnesium, but many of us have taken and do take lots of magnesium. If magnesium were enough to do the trick, then folks wouldn't still be looking for answers.

That's why it's important to put the horse in front of the cart, and not the other way around, if we want to win this race.

Let's focus on the promise of Benicar now to help us balance the D-metabolites in hopes that doing so will allow the magnesium levels to normalize again.

Let's also all remember the importance of measuring those D-metabolites FIRST, BEFORE starting a trial of Benicar. Also, remember to measure ACE too, as recommended by Trevor Marshall.

PS - I'm editing to add another Thank You to Marnie for reminding us about the ICHT fiasco and the disappointing promise of a "quick cure" by Bachynski(sp) in Italy. Scott wasn't around back then, so he can't understand why folks are feeling so wary now of him when he proclaims another miraculous sure-cure.

I read in one of your posts that you have already dropped down in your dosage of Benicar..., it sounds like by half. from 40mg to 20mg...

You have been on the drug for a very short time...is the basis of trevors dosing, based on inflammatory symptoms going away?

From what I understand the drug does not work at regular BP dosages...just curious what you think is happening...

Also...

I get concerned that another mechanism might be in play, like the dialating of the blood vessels....allowing irregular sized or damaged blood cells to pass easier...thus decreasing pain and other symptoms...still a useful but another mechanism entirely at play...

I would be curious if this has been looked at in his research....

Pathologists working with CFIDS noticed that there was a marked size increase in some cells making it difficult for them to pass easily thu the circulatory system...a vasculitis resulting...

Without doing his testing protocol I don't see how someone doing his protocol could tell the difference, which mechanism is in play?

Sounds like you are dosing based on your symptoms, since you have not done the tests... without the tests how will you know to stop the drug? By cutting back and seeing what happens?

Byron2

quote:

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Originally posted by free2reckon:

...e.g., I'm already down to 20 mg tid and will likely be able to lower than in the not to distant future.

[This message has been edited by free2reckon (edited 09 May 2004).][/B]

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quote:

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Originally posted by rosesisland2000:
But, would not the milk make you have more Vit D and we don't need that. Besides, I am lactose intolerant and don't drink milk.

But, would just any licorice raise the BP? Or it has to be that and taken in milk?

Just curious...

Rosemary

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quote:

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Originally posted by pennyhoule:
Hi Jason,

Licorice might be a good idea in the begining when you're feeling dizzy and concerned about low B, but I don't know for sure. I did consider it when I was feeling woozy. However, Dr. Marshall is not a proponent of licorice or B vitamins in the early phases because they contain some vitamin D.

I think it's really important to get those d tests done in the beginning. See if this is an issue for us. Regardless, vitamin D is involved in the inflammation cycle in some way. It's some kind of steroidal hormone precursor which I can't explain, but affects the parathyroid among other things. It's the rapid drop of the 1,25-D that causes a shift in the hormones, along with suppressing the inflammatory process and activating the immune system, and it's a combination of these things that causes some of the initial symptoms of dizziness and fatigue.

I had one night of extreme itching. Really bizarre, as I'm not even on abx yet. But Marshall says that's a herx from my own immune system finally being freed up enought to recognize the pathogens. That's exciting! Oddly, in the past I dealt with my itching by taking large amounts of b vitamins (licorice), and it stopped the itching. Now, with this latest itching episode, I'm wondering if the B was helping or simply stopping the immune system's ability to respond to the pathogens by increasing the inflammatory cascade? This is Marshall's concern, that a lot of supplements are designed to boost the immune system. In the wrong way. We don't want to suppress it, we just want it freed up to work properly. Boosting it with supplements may actually be contributing to the inflammatory cascade.

penny

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quote:

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Originally posted by Marnie:
ASA...good old aspirin (an anti-inflammatory)also reduces TNF alpha. But those who take Benicar CANNOT TAKE ASPIRIN...the risk of kidney damage goes up above 300mg. per day.
I fear many will not realize/know this. Many pop ASA without a thought.

As a doctor and researcher who has studied immunology and microbiology, why are you not interested in looking at and discussing my documented research, including of late, the Romanian abstract? Look at the % drop of Mg. It is astounding.

Only when we work TOGETHER...sharing information, seeing how this all fits together, will we truly finish this puzzle and find the safest cure.

---

From: www.Intelihealth.com (Harvard Medical School and Aetna)

Here is what taking advice from unqualified people can do to you:

Licorice (Glycyrrhiza glabra), Deglycyrrhizinated Licorice, Carbenoxolone

Be aware that the U.S. Food and Drug Administration does not strictly regulate herbs and dietary supplements. There is no guarantee of strength, purity or safety of products containing or claiming to contain licorice. Decisions to use herbs or supplements should be carefully considered. Individuals using prescription drugs should discuss taking herbs or supplements with their pharmacist or health care provider before starting.

Evidence
Unproven Uses
Potential Dangers
Interactions
Dosing
Summary
Resources

Evidence

This monograph discusses licorice; deglycyrrhizinated licorice (DGL), which does not contain glycyrrhizinic acid, a chemical in licorice that causes many side effects; and carbenoxolone, a chemical that can be processed out of licorice. Scientists have studied these three substances for the following health problems:

Peptic ulcer disease
Licorice extracts, DGL and carbenoxolone have been studied for treating peptic ulcers. DGL (but not carbenoxolone) may offer some benefits. However, these studies have been small, with flaws in their designs, and results of different studies have disagreed with each other. Therefore, it is unclear whether there is any benefit from licorice for this condition.
Apthous ulcers, canker sores
Some research suggests that licorice extracts, DGL and carbenoxolone may provide benefits for treating cankers sores. However, studies have been small, with flaws in their designs. The safety of DGL makes it an attractive therapy if it does speed healing of these sores, but it is not clear at this time whether there is truly any benefit.
Bleeding stomach ulcers caused by aspirin
Although there has been some study of DGL in this area, it is not clear what effects DGL has on gastrointestinal bleeding.
Herpes simplex virus
Laboratory studies have found that DGL may hinder the spread and infection of herpes simplex virus. Studies in humans have been small, but they suggest that topical application of carbenoxolone cream may improve healing and prevent recurrence.
Viral hepatitis
The licorice extracts DGL and carbenoxolone have been proposed as possible therapies for viral hepatitis. Animal studies have investigated the mechanism of licorice in hepatitis, and studies in humans have shown some benefits with a patented intravenous licorice preparation that is not available in the United States. Studies using oral licorice have been small, with flaws in their designs. Therefore, it is not clear whether there is any benefit from oral licorice for hepatitis treatment.
High potassium levels resulting from abnormally low aldosterone levels
In theory, because of the known effects of licorice on the kidney, there may be some benefits of licorice for high potassium levels caused by a condition called hypoaldosteronism. There is early evidence in humans in support of this use. However, a qualified health care provider should supervise treatment.
Familial Mediterranean fever
A small clinical pilot study and laboratory study results of a multi-ingredient preparation containing licorice, called Immunoguard, suggest efficacy in managing familial Mediterraneann fever. Well-designed study of licorice alone is necessary to make a recommendation.
Genital herpes
Available studies have not found any benefit from carbenoxolone cream when applied topically to treat genital herpes infections.

Unproven Uses

Licorice has been suggested for many other uses, based on tradition or on scientific theories. However, these uses have not been thoroughly studied in humans, and there is limited scientific evidence about safety or effectiveness. Some of these suggested uses are for conditions that are potentially very serious and even life-threatening. You should consult a health care provider before taking licorice for any unproven use.

Adrenal insufficiency (Addison's disease)
Antimicrobial
Antioxidant
Antispasmodic
Aplastic anemia
Asthma
Bacterial infections
Bad breath
Body fat reducer
Bronchitis
Cancer
Chronic fatigue syndrome
Colitis
Colorectal cancer
Constipation
Coronavirus
Cough
Dental hygiene
Depression
Detoxification
Diabetes
Diverticulitis
Dropped head syndrome
Eczema
Epstein-Barr virus Fever
Laryngitis
Gastroesophageal reflux disease
Gentamicin-induced kidney damage
Graft healing
High cholesterol
HIV
Hormone regulation
Inflammation
Inflammatory skin disorders
Liver protection
Lung cancer
Menopausal symptoms
Methicillin-resistance Staphylococcus aureus
Muscle cramps
Obesity
Osteoarthritis
Plaque
Polycystic ovarian syndrome
Rheumatoid arthritis
SARS
Skin disorders
Sore throat
Stomach upset
Urinary tract inflammation

Potential Dangers

Allergies

People should avoid licorice if they have a known allergy to licorice, any component of licorice or any member of the Fabaceae (Leguminosae) plant family. Signs of allergy may include rash, itching or shortness of breath.

Side Effects

Licorice contains a chemical called glycyrrhizic acid, which causes many side effects. DGL has had the glycyrrhizic acid removed and is considered safer for use.

Many of the adverse effects of licorice result from the actions it has on hormone systems in the body. By altering the activities of certain hormones, licorice may cause electrolyte disturbances in some people. These disturbances can include sodium and fluid retention, low potassium levels and metabolic alkalosis. Licorice has caused high blood pressure and negative effects on the brain (hypertensive encephalopathy), with symptoms of serious headache, nausea, vomiting and one-sided weakness. Electrolyte abnormalities may also lead to irregular heartbeats, heart attack, kidney damage, muscle weakness or muscle breakdown. People with congestive heart failure, coronary heart disease, kidney or liver disease, fluid retention, high blood pressure and hormonal abnormalities and those taking diuretics should avoid taking licorice. Abnormally low testosterone levels in men or high prolactin or estrogen levels in women have also been reported. These adverse effects may make it difficult to become pregnant and may cause menstrual abnormalities. Reduced body fat mass has been observed. High doses of licorice may cause temporary vision problems or loss.

Pregnancy And Breast-Feeding

Licorice cannot be recommended during pregnancy and breast-feeding because of the risk of abnormalities caused by altered hormone levels and the possibility of premature labor.

Interactions

Interactions with drugs, supplements and other herbs have not been thoroughly studied. The interactions listed below have been reported in scientific publications. If you are taking prescription drugs, speak with your health care provider or pharmacist before using herbs or dietary supplements.

Interactions With Drugs

In general, prescription drugs should be taken one hour before licorice or two hours after licorice because licorice may increase the absorption of many drugs. Increased absorption may increase the activities and side effects of some drugs including nitrofurantoin. Because the toxicity of digoxin (Lanoxin) is increased when potassium levels are low, people who take digoxin and are interested in using licorice should discuss this with their health care provider. Increased monitoring may be necessary.

Licorice may reduce the effects of blood pressure or diuretic (urine-producing) drugs, including hydrochlorothiazide and spironolactone. Furthermore, use of licorice with hydrochlorothiazide may cause potassium levels to fall too low and lead to dangerous complications. Other drugs that can also cause potassium levels to fall too low and are best avoided when using licorice include insulin, sodium polystyrene (kayexalate) and laxatives. Licorice may increase the adverse effects associated with corticosteroids, such as prednisolone, and monoamine oxidase inhibitors, such as phenelzine (Nardil).

Licorice may reduce the effects of birth control pills, hormone replacement therapies and testosterone therapy. Drugs that may increase the tendency for irregular heart rhythms, such as erythromycin or amiodarone (Cordarone), are best avoided when using licorice. In theory, licorice may increase the risk of bleeding when used with anticoagulants (blood thinners) or antiplatelet drugs. Examples include warfarin (Coumadin), heparin and clopidogrel (Plavix). Some pain relievers may also increase the risk of bleeding if used with licorice. Examples include aspirin, ibuprofen (Motrin, Advil) and naproxen (Naprosyn, Aleve, Anaprox). Chewing tobacco may increase the toxicity of licorice gums by causing electrolyte disturbances.

Licorice was shown to increase absorption of diclofenac gel in a rat study. Phosphate salts have been shown to increase licorice absorption.

Interactions With Herbs And Dietary Supplements

Low potassium levels may occur if licorice is used with herbs that have laxative properties, such as senna or psyllium. Herbs that increase the risk of bleeding, such as Ginkgo biloba and garlic (Allium sativum); those that have diuretic properties, such as horsetail (Equisetum arvense); and supplements that lower blood pressure, such as hawthorn (Crataegus laevigata), may have a greater tendency for adverse effects when used with licorice. Licorice may also increase adverse effects associated with herbs that have possible monoamine oxidase inhibitor activity, such as St. John's wort (Hypericum perforatum).

Interactions With Laboratory Values

Licorice has been shown to decrease cortisol, ACTH (adrenocorticotrophic hormone), aldosterone and potassium levels in animals. Increases in renin and sodium levels have also been observed.

Dosing

The doses listed below are based on scientific research, publications or traditional use. Because most herbs and supplements have not been thoroughly studied or monitored, safety and effectiveness may not be proven. Brands may be made differently, with variable ingredients even within the same brand. Combination products often contain small amounts of each ingredient and may not be effective. Appropriate dosing should be discussed with a health care provider before starting therapy; always read the recommendations on a product's label. The dosing for unproven uses should be approached cautiously, because scientific information is limited in these areas.

The expert panel German Commission E recommends that licorice be used for only four to six weeks unless under direct medical supervision. However, this is based on the use of relatively large daily doses (five to 15 grams per day). Many experts believe that extended treatments may be safe if lower doses are used. In a four-week study in healthy individuals, recommended doses were well tolerated, with few adverse effects. There are no standard or well-studied doses of licorice, and many different doses are used traditionally.

Adults (Aged 18 Or Older)

Licorice powdered root (4 percent to 9 percent glycyrrhizin): Doses of one to four grams taken by mouth daily, divided into three or four doses, have been used.

Licorice fluid extract (10 percent to 20 percent glycyrrhizin): Doses of two to four milliliters per day have been taken by mouth.

DGL extract tablets: Doses of 380 to 1140 milligrams three times daily taken by mouth 20 minutes before meals have been used.

Carbenoxolone gel or cream: A 2 percent cream or gel has been applied five times a day for seven to 14 days for herpes simplex virus skin lesions.

Children (Younger Than 18)

There are not enough scientific data to recommend licorice for use in children, and licorice is not recommended because of potential side effects.

Summary

Licorice and licorice extracts have been suggested as treatments for many conditions. However, there is not enough scientific evidence to support the use of licorice or licorice extract for any medical condition. Licorice may increase the risk of electrolyte disturbances and hormonal abnormalities and should be avoided in those with heart disease, high blood pressure or underlying hormonal disorders. It should also be avoided in pregnant or breast-feeding women and in children. It is possible that licorice may increase the risk of bleeding. Safety of use beyond four weeks has not been extensively studied. Consult your health care provider immediately if you have any side effects.

The information in this monograph was prepared by the professional staff at Natural Standard, based on thorough systematic review of scientific evidence. The material was reviewed by the Faculty of the Harvard Medical School with final editing approved by Natural Standard.

Resources

Natural Standard: An organization that produces scientifically based reviews of complementary and alternative medicine (CAM) topics
National Center for Complementary and Alternative Medicine (NCCAM): A division of the U.S. Department of Health & Human Services dedicated to research

Selected Scientific Studies: Licorice

Natural Standard reviewed more than 350 articles to prepare the professional monograph from which this version was created.

Some of the more recent English-language studies are listed below:

Amaryan G, Astvatsatryan V, Gabrielyan E, et al. Double-blind, placebo-controlled, randomized, pilot clinical trial of ImmunoGuard: a standardized fixed combination of Andrographis paniculata Nees, with Eleutherococcus senticosus Maxim, Schizandra chinensis Bail and Glycyrrhiza glabra L. extracts in patients with familial Mediterranean fever. Phytomedicine 2003;May, 10(4):271-285.
Arase Y, Ikeda K, Murashima N, et al. The long term efficacy of glycyrrhizin in chronic hepatitis C patients. Cancer 1997;79(8):1494-1500.
Carbonell-Barrachina AA, Aracil P, Garcia E, et al. Source of arsenic in licorice confectionery products. J Agric Food Chem 2003;Mar 12, 51(6):1749-1752.
Cinatl J, Morgenstern B, Bauer G, et al. Glycyrrhizin, an active component of liquorice roots, and replication of SARS-associated coronavirus. Lancet 2003;Jun 14, 361(9374):2045-2046.
Elinav E, Chajek-Shaul T. Licorice consumption causing severe hypokalemic paralysis. Mayo Clin Proc 2003;Jun, 78(6):767-768.
Eriksson JW, Carlberg B, Hillorn V. Life-threatening ventricular tachycardia due to liquorice-induced hypokalaemia. J Intern Med 1999;245(3):307-310.
Fujioka T, Kondou T, Fukuhara A, et al. Efficacy of a glycyrrhizin suppository for the treatment of chronic hepatitis C: a pilot study. Hepatol Res 2003;May, 26(1):10-14.
Harada T, Ohtaki E, Misu K, et al. Congestive heart failure caused by digitalis toxicity in an elderly man taking a licorice-containing chinese herbal laxative. Cardiology 2002;98(4):218.
Hino****a F, Ogura Y, Suzuki Y, et al. Effect of orally administered shao-yao-gan-cao-tang (Shakuyaku-kanzo-to) on muscle cramps in maintenance hemodialysis patients: a preliminary study. Am J Chin Med 2003;31(3):445-453.
Hughes J, Sellick S, King R, Robbe IJ. Re: "Preterm birth and licorice consumption during pregnancy." Am J Epidemiol 2003;Jul 15, 158(2):190-191; author reply, 191.
Kamei J, Nakamura R, Ichiki H, Kubo M. Antitussive principles of Glycyrrhizae radix, a main component of the Kampo preparations Bakumondo-to (Mai-men-dong-tang). Eur J Pharmacol 2003;May 23, 469(1-3):159-163.
Kang DG, Sohn EJ, Mun YJ, et al. Glycyrrhizin ameliorates renal function defects in the early-phase of ischemia-induced acute renal failure. Phytother Res 2003;Sep, 17(8):947-951.
Kang DG, Sohn EJ, Lee HS. Effects of glycyrrhizin on renal functions in association with the regulation of water channels. Am J Chin Med 2003;31(3):403-413.
Lin JC. Mechanism of action of glycyrrhizic acid in inhibition of Epstein-Barr virus replication in vitro. Antiviral Res 2003;Jun, 59(1):41-47.
Liu J, Manheimer E, Tsutani K, Gluud C. Medicinal herbs for hepatitis C virus infection: a Cochrane hepatobiliary systematic review of randomized trials. Am J Gastroenterol 2003;Mar, 98(3):538-544.
Nokhodchi A, Nazemiyeh H, Ghafourian T, et al. The effect of glycyrrhizin on the release rate and skin penetration of diclofenac sodium from topical formulations. Farmaco 2002;Nov, 57(11):883-888.
Ofir R, Tamir S, Khatib S, Vaya J. Inhibition of serotonin re-uptake by licorice constituents. J Mol Neurosci 2003;Apr, 20(2):135-140.
Oganesyan KR. Antioxidant effect of licorice root on blood catalase activity in vibration stress. Bull Exp Biol Med 2002;Aug, 134(2):135-136.
Russo S, Mastropasqua M, Mosetti MA, et al. Low doses of liquorice can induce hypertension encephalopathy. Am J Nephrol 2000;20(2):145-148.
Sasaki H, Takei M, Kobayashi M, et al. Effect of glycyrrhizin, an active component of licorice roots, on HIV replication in cultures of peripheral blood mononuclear cells from HIV-seropositive patients. Pathobiology 2002-2003;70(4):229-236.
Serra A, Uehlinger DE, Ferrari P, et al. Glycyrrhetinic Acid decreases plasma potassium concentrations in patients with anuria. J Am Soc Nephrol 2002;13(1):191-196.
Sigurjonsdottir HA, Manhem K, Axelson M, Wallerstedt S. Subjects with essential hypertension are more sensitive to the inhibition of 11 beta-HSD by liquorice. J Hum Hypertens 2003;Feb, 17(2):125-131.
Sohn EJ, Kang DG, Lee HS. Protective effects of glycyrrhizin on gentamicin-induced acute renal failure in rats. Pharmacol Toxicol 2003;Sep, 93(3):116-122.
Strandberg TE, Andersson S, Jarvenpaa AL. Risk factors for preterm delivery. Lancet 2003;Feb 1, 361(9355):436; author reply, 436-437.
van Rossum TG, Vulto AG, Hop WC, et al. Glycyrrhizin-induced reduction of ALT in European patients with chronic hepatitis C. Am J Gastroenterol 2001;96(8):2432-2437.

Last updated September 29, 2003