Re: Dr. Harvey & Morgellons - Nelly

[Guest guest]

Nelly, I dont want to sound like devils advocate here, but I

observed those discussions on lymenet, and saw the situation that

you mentioned unfold.

As with all kinds of arguments, I think the whole situation was

unfortunately characterised with misunderstanding.

If only people could exchange points of view on these issues,

without finding problems with the people exchanging them, then a

more free-flowing, educative and hopefully positive outcome could be

achieved.

I can see that the end result of that discussion has had an

obviously negative effect on you emotionally, and I sympathise with

that, but I dont feel that it is justified to vent that frustration

and anger on this board, and potentially set in motion a similar

chain of events here. I would hate to see potentially positive

exchanges of information, and open minded discussion of new

experimental treatments such as Benicar prevented on this list.

So by all means, please post about any concerns that you might have,

for they are obviously warranted and justified, and can hopefully be

answered. But please dont take the concern from the issue, to the

person.

Sincerely,

.

> ,

>

> My concerns re Benicar:

>

> -Concerns about high doses of ARBs lowering BP beyond what is

reasonable.

>

> Trevor Marshall and say it doesn't but we have no proof that

it won't make you BP go through the floor in a dangerous fashion,

especially in the high doses that are rxed to achieve anti-

inflammatory effects.

>

> -I also have queries about whether using ARBs to stop the

infalmmatory cascade might not have the same immunosuppressive

effects as cortisone. That could have absolutely disastrous effects

on the ones among us who have these complex infections.

>

> Afterall, as reported, dexamethasone made him and other

feel " cured " .

>

> This is the discussion I wanted to have with on Lymenet but

couldn't bec he was such a bully:

>

> How do we KNOW Benicar will not have these " cortisone-like "

effects on us?

>

> says: it is not immunosuppressive, it is immunomodulatory,

it just resets the immune system which according to Marshall is

stuck in Th1 mode.

>

> But you see, one of the signs that both Penny and used, to

claim we are stuck in this kind on immune dysfunction, is that " we

don't catch viral things " . That was taken almost fro granted.

>

> even said something along the lines that Lyme BLPs protected

us against viruses by triggering some anti-viral response.

>

> I strongly object to that being taken as " fact " , as I know many

people, including myself, who experience the exact opposite ie we

come down with every viral thing and have a lot of trouble gettiing

over them.

>

> But none of these concerns have been addressed by the new self-

proclaimed Benicar Guru (). Just brushed off by some sweeping

statement about me " being an Ennemy of Truth " , + a couple of

pretentious quotes from Albert Einstein and ...Mel Gibson!!!

>

> I AM interested in this whole idea of stopping the inflammatory

cascade (who isn't?!) and I think people like have looked

into all this very thoroughly, but we MUST go into it cautiously.

Modulating the immune system is not a) an easy thing to do, not

devoid of risks

>

> I am truly disgusted with most people on Lymenet for their

reactions to me, and to the few others who DARED to voice their

concerns.

>

> Now, we are being held responsible for having petulantly

removed all his posts from the board!!

>

> Geez, I am really pissed off, was making such outrageous

claims re Benicar, he didn't hesitate to tell people it was totally

safe, no side-effects, could be given to children without problems,

that it was the CURE we had all been waiting for etc... and I get

into trouble for voicing concern!!

>

> It's a newish drug (still not available in France, I asked my

chemist) and it has been used for people with high BP and in doses

Of 20 mg or 40 mg PER DAY and the Marshall Protocol requires one to

use X4 the dosages used normally, and it has not been used for

people under the age of 18.

>

> Nelly

>

> PS REPEAT: I AM NOT AGAINST BENICAR, I JUST THINK WE NEED TO STOP

AND THINK A BIT LONGER BEFORE LETTING PEOPLE CLAIM IT IS THE HOLY

GRAIL!!!

>

>

[Guest guest]

> ,

>

> My concerns re Benicar:

>

> -Concerns about high doses of ARBs lowering BP beyond what is

reasonable.

>

> Trevor Marshall and say it doesn't but we have no proof that

it won't make you BP go through the floor in a dangerous fashion,

especially in the high doses that are rxed to achieve anti-

inflammatory effects.

Nelly, I had a similar concern myself, and after investigating the

issue, found this page to be the best summary of an Answer to that

question that I could find. Apparently, a placebo controlled study

has been conducted, that shows that the effects of Benicar on blood

pressure actually plateau at higher doses, and that ARBS as

themselves are not actually very effective medications for

hypertension.

http://sarcinfo.com/phorum/read.php?f=1 & i=10825 & t=2510

>

> -I also have queries about whether using ARBs to stop the

infalmmatory cascade might not have the same immunosuppressive

effects as cortisone. That could have absolutely disastrous effects

on the ones among us who have these complex infections.

>

> Afterall, as reported, dexamethasone made him and other

feel " cured " .

>

>

This aspect of the question I have not been able to find an answer

for, but it I found no indication on Medline that ARBs have any

immunosuppresive properties.

I did find this study, however, that discusses how ARB's can

facilitate a shift in TH1 and TH2 cytokine balance.

Here it is.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=12771047

Hope that was of some help,

Sincerely,

.

[Guest guest]

Well phrased. This board is open and good, let's not vent lymenut

frustrations here.

> > ,

> >

> > My concerns re Benicar:

> >

> > -Concerns about high doses of ARBs lowering BP beyond what is

> reasonable.

> >

> > Trevor Marshall and say it doesn't but we have no proof

that

> it won't make you BP go through the floor in a dangerous fashion,

> especially in the high doses that are rxed to achieve anti-

> inflammatory effects.

> >

> > -I also have queries about whether using ARBs to stop the

> infalmmatory cascade might not have the same immunosuppressive

> effects as cortisone. That could have absolutely disastrous effects

> on the ones among us who have these complex infections.

> >

> > Afterall, as reported, dexamethasone made him and other

> feel " cured " .

> >

> > This is the discussion I wanted to have with on Lymenet but

> couldn't bec he was such a bully:

> >

> > How do we KNOW Benicar will not have these " cortisone-like "

> effects on us?

> >

> > says: it is not immunosuppressive, it is immunomodulatory,

> it just resets the immune system which according to Marshall is

> stuck in Th1 mode.

> >

> > But you see, one of the signs that both Penny and used, to

> claim we are stuck in this kind on immune dysfunction, is that " we

> don't catch viral things " . That was taken almost fro granted.

> >

> > even said something along the lines that Lyme BLPs

protected

> us against viruses by triggering some anti-viral response.

> >

> > I strongly object to that being taken as " fact " , as I know many

> people, including myself, who experience the exact opposite ie we

> come down with every viral thing and have a lot of trouble gettiing

> over them.

> >

> > But none of these concerns have been addressed by the new self-

> proclaimed Benicar Guru (). Just brushed off by some sweeping

> statement about me " being an Ennemy of Truth " , + a couple of

> pretentious quotes from Albert Einstein and ...Mel Gibson!!!

> >

> > I AM interested in this whole idea of stopping the inflammatory

> cascade (who isn't?!) and I think people like have looked

> into all this very thoroughly, but we MUST go into it cautiously.

> Modulating the immune system is not a) an easy thing to do, not

> devoid of risks

> >

> > I am truly disgusted with most people on Lymenet for their

> reactions to me, and to the few others who DARED to voice their

> concerns.

> >

> > Now, we are being held responsible for having petulantly

> removed all his posts from the board!!

> >

> > Geez, I am really pissed off, was making such outrageous

> claims re Benicar, he didn't hesitate to tell people it was totally

> safe, no side-effects, could be given to children without problems,

> that it was the CURE we had all been waiting for etc... and I get

> into trouble for voicing concern!!

> >

> > It's a newish drug (still not available in France, I asked my

> chemist) and it has been used for people with high BP and in doses

> Of 20 mg or 40 mg PER DAY and the Marshall Protocol requires one to

> use X4 the dosages used normally, and it has not been used for

> people under the age of 18.

> >

> > Nelly

> >

> > PS REPEAT: I AM NOT AGAINST BENICAR, I JUST THINK WE NEED TO STOP

> AND THINK A BIT LONGER BEFORE LETTING PEOPLE CLAIM IT IS THE HOLY

> GRAIL!!!

> >

> >

[Guest guest]

Nelly, my intentions were not to patronise you and I apologise that

you interpreted it that way. I was simply saying that I have no

problem with discussing the concerns about the issues regarding

Benicar, and openly encourage it! But please leave personal and

emotional responses out.

Sincerely,

.

> athan,

>

> I had read your second mail BEFORE replying to your first message,

I would NOT have replied at all.

>

> If things can not be discussed on this list EITHER then I will

just not bother again.

>

> I do not need your patronising remarks thank you!

>

> Nelly

> ----- Original Message -----

>

>

[Guest guest]

Nelly,

Every single one of your concerns listed below has been

scientifically addressed to the FDA's and to SAnkyo's satisfaction.

Somehow, every time or I would try to answer a concern at

lymenet, where there seemed to be a lot of interest, we'd be

bizarrely accused of having some evil agenda, or a completely

irrelevant point would be latched onto (like the virus thing - which

was nothing more than a personal observation - I thought it was a

discussion, not an interrogation?). Or claims would be made about

Benicar's safety that just had no basis in fact. Just because

was exuberant and optimistic didn't mean anyone has to take Benicar.

It has to be prescribed by a physician who sees the potential

benefits for his patient. My doctor had no problem with the " risks "

a few people at lymenet seemed so intent on creating. He looked at

the risks. They just aren't there.

PLEASE, I IMPLORE YOU, go to sarcinfo.com and look up the studies

yourself. All the info is there. Of course it makes sense to be

cautious and prudent, but the worries people were bringing up and

emphasizing are just simply not supported by ANY science. But when

they're brought up as if they're true, then people who are not so

inclined to do the research themselves, react negatively and refuse

to look at a potentially helpful treatment.

Dr. Marshall has talked to the FDA & NIH about this usage for Sarc.

They're supportive. It's better than the alternatives, which are

steroids, and if you read the research, you'll see that Marshall is

absolutely AGAINST all steroids. Benicar does NOT effect the body

the way steroids do. HE'S got this illness himself. He did NOT want

to kill himself in the process of treatment. He wants to minimize

suffering. He believes the herxes themselves are damaging to our

bodies and health. He's found a safe, very effective treatment, and

wants to share the info. He's said he'd like to retire, but he

can't, until others get well, as he has. He's a good, brilliant man,

running a non profit foundation for autoimmune research.

I mean, please, the answers are there at his site. People should

look this up for themselves before being scared away. This is one of

the safest treatments I think I've ever done. I think it's safer

than aspirin (another antiinflammatory that is not understood, in

contrast to Benicar which is understood completely). Definitely

safer than ibuprofen, or klonopin, or all the other marginal and

addictive drugs we take to try to cope with this disease. As it

turns out, it's probably even safer than a lot of the supplements

we're misguidedly taking. Read the site to understand what I mean.

Trevor's got an amazing understanding of the immune system. At least

his research is worth a look whether someone wants to try the

protocol or not.

People's writing " style " or enthusiasm or lack therof should have

nothing to do with this. This is about people getting well. That's

the only reason I'm here, as it sure ain't fun hanging out in sick

rooms.

penny

> > ,

> >

> > My concerns re Benicar:

> >

> > -Concerns about high doses of ARBs lowering BP beyond what is

> reasonable.

> >

> > Trevor Marshall and say it doesn't but we have no proof

that

> it won't make you BP go through the floor in a dangerous

fashion,

> especially in the high doses that are rxed to achieve anti-

> inflammatory effects.

> >

> > -I also have queries about whether using ARBs to stop the

> infalmmatory cascade might not have the same immunosuppressive

> effects as cortisone. That could have absolutely disastrous

effects

> on the ones among us who have these complex infections.

> >

> > Afterall, as reported, dexamethasone made him and other

> feel " cured " .

> >

> > This is the discussion I wanted to have with on Lymenet

but

> couldn't bec he was such a bully:

> >

> > How do we KNOW Benicar will not have these " cortisone-like "

> effects on us?

> >

> > says: it is not immunosuppressive, it is

immunomodulatory,

> it just resets the immune system which according to Marshall is

> stuck in Th1 mode.

> >

> > But you see, one of the signs that both Penny and used,

to

> claim we are stuck in this kind on immune dysfunction, is

that " we

> don't catch viral things " . That was taken almost fro granted.

> >

> > even said something along the lines that Lyme BLPs

protected

> us against viruses by triggering some anti-viral response.

> >

> > I strongly object to that being taken as " fact " , as I know

many

> people, including myself, who experience the exact opposite ie

we

> come down with every viral thing and have a lot of trouble

gettiing

> over them.

> >

> > But none of these concerns have been addressed by the new self-

> proclaimed Benicar Guru (). Just brushed off by some

sweeping

> statement about me " being an Ennemy of Truth " , + a couple of

> pretentious quotes from Albert Einstein and ...Mel Gibson!!!

> >

> > I AM interested in this whole idea of stopping the

inflammatory

> cascade (who isn't?!) and I think people like have looked

> into all this very thoroughly, but we MUST go into it

cautiously.

> Modulating the immune system is not a) an easy thing to do,

not

> devoid of risks

> >

> > I am truly disgusted with most people on Lymenet for their

> reactions to me, and to the few others who DARED to voice their

> concerns.

> >

> > Now, we are being held responsible for having petulantly

> removed all his posts from the board!!

> >

> > Geez, I am really pissed off, was making such outrageous

> claims re Benicar, he didn't hesitate to tell people it was

totally

> safe, no side-effects, could be given to children without

problems,

> that it was the CURE we had all been waiting for etc... and I

get

> into trouble for voicing concern!!

> >

> > It's a newish drug (still not available in France, I asked my

> chemist) and it has been used for people with high BP and in

doses

> Of 20 mg or 40 mg PER DAY and the Marshall Protocol requires one

to

> use X4 the dosages used normally, and it has not been used for

> people under the age of 18.

> >

> > Nelly

> >

> > PS REPEAT: I AM NOT AGAINST BENICAR, I JUST THINK WE NEED TO

STOP

> AND THINK A BIT LONGER BEFORE LETTING PEOPLE CLAIM IT IS THE

HOLY

> GRAIL!!!

> >

> >

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>