benicar to cool down the inflammation?

[Guest guest]

Hi, Bob.

I hope that you will understand that the Marshall protocol is one of

those things that is right at the cutting edge, right at the

frontier of research. The reason you haven't read a lot of critical

comments about it from me is that I, like everyone else, am learning

as the results come in from the brave pioneers, like yourself, who

have been trying it. It's not something I can look up in my

textbooks or even on PubMed, because it's new! There isn't much

there that pertains to it yet.

The same thing is true about the ciguatoxin discovery in CFS and the

STAT-1 issue. These are all interesting and exciting things, and I,

like you, want to know more about them and to find out if they will

end up helping PWCs. But the only way this is going to happen is to

have more research done, and we are going to have to be patient and

wait until this has happened.

I'm sure that it must be very frustrating to be suffering from a

disorder that is not yet well understood, and not to know what

treatment is most likely to help. You are getting a " germ's eye

view " of what scientific research is really like at the front

lines. Contrary to the popular image of science, the actual

practice of the scientific method is a lot like groping in the

dark. We make a lot of false starts, do a lot of trial and error,

and make a lot of mistakes. Those are the facts, from the point of

view of myself, someone who has worked as a scientist (albeit in

another field of science, but all fields of science have this in

common) for over 40 years. If we knew of a better way to figure out

things in the physical universe, we would use it. Unfortunately,

this is the best way we know of.

So what I would ask of you is patience. I would guess that you're

probably thinking, " Well, that's easy for him to say. He's not

sick! " If you're thinking that, I will grant you that you have a

good point. Nevertheless, I'm still asking you to be patient,

because there's really no better choice than that. The scientific

method is the best approach we have. Becoming impatient and railing

against various people really doesn't help move the process ahead

faster. In fact, it may hinder the process. Scientists have

feelings, too, you know. It's not so easy to be the one who is

trying to introduce something new. There's all kinds of resistance,

and you are always having to deal with your own uncertainties. If

you could be sure of the outcome, you wouldn't have to use the

scientific method.

I sense from your recent posts that you are somewhat frustrated with

Dr. Marshall. I don't know him personally, but I think I have some

idea of what he's up against, and I hope that you will try to see

his point of view as well as your own. He has a protocol that has

worked on his own disease, sarcoidosis. He has seen that it has

also helped others with sarcoidosis, and perhaps also lupus. Based

on his as yet incomplete understanding of the disease processes, he

has reason to hope and believe that this protocol will also help

people with other disorders. It's not easy to run a proper clinical

trial to see if this is true. For one thing, you need quite a bit

of money to do it, and this usually must come either from a

pharmaceutical company which has a pretty fair assurance of ending

up with a profit from it, or they won't be interested, or you must

get support from a government agency, such as the NIH, or from a

private foundation. So you send in grant requests, and guess who

evaluates them. It's a group of your " peers, " which happens to be a

group of people who are also in competition with you to get grant

money from the same agency or institution. They aren't always very

enthusiastic to see you walk away with the some money they were

trying to get themselves! In addition to this, you must get the

agreement and support of a lot of other people, including practicing

physicians, who stand to lose their licenses or be sued for

malpractice if the state medical boards or individuals decide to go

after them for some reason, and also patients, who must be willing

to try the protocol. If you are using pharmaceuticals, as the

Marshall protocol does, you must get the cooperation of the FDA,

which also has a fairly rigid, costly and time-consuming set of

hoops that you must jump through. You must also get the approval of

an institutional review board to do a trial on human subjects, and

you must get informed consent forms signed. All of these things can

amount to insurmountable barriers, and they are the reason why it is

so difficult and so time consuming to make progress in healthcare

therapies.

I hope you will try to understand what Dr. Marshall is up against.

Sure, if he turns out to be right about all the diseases he thinks

will be helped by his protocol, and if he lives long enough, he will

get a lot of credit eventually, and in that case, I think he will

also stand a good chance of getting the Nobel prize in medicine and

physiology. But we should not begrudge him that possibility. If

that happens, he will certainly have earned it. What's more, he

will have helped countless people to get their lives back. I think

we need to view him as being on the same side as we are. We all

have a common enemy, and that is disease. And our enemy is so

formidable that we need to stick together to fight it. We can't

really afford to be fighting with each other.

I know that you have been through a lot, Bob, just as many others on

these lists have. There have been a lot of disappointments. I

expect that, unfortunately, there will be more in the future. CFS

is a very heterogeneous disorder. It is unlikely that a

single " cure " will work for everyone. The best we can do is to try

to characterize what works for what subset of patients, and help as

many people as soon as we can. I'm hopeful that the Marshall

protocol will end up being a successful treatment for a substantial

subset of PWCs. I don't believe it will end up being universal.

You asked about the " dangers " of the Marshall protocol. I don't

know enough about that to comment definitively. I gather from the

discussions that it can lower the blood pressure, but so far that

doesn't seem to have hurt anyone who is trying it. I've seen

references to herxheimer reactions that can be very severe if the

protocol is not regulated carefully in some cases. Dr. Marshall has

cautioned people about using additional antibiotics that he has not

included in the protocol. No doubt there are risks, as there are in

all of life, and each person needs to make their own decision about

what they are willing to try, based on the information they can get.

You also asked whether I think you need I.V. glutathione. As I've

said before on these lists, I think that the best way to determine

this is to have a test run to measure your glutathione status. One

of the less expensive ones, I think, is the one from Immunosciences

Lab, measuring both reduced and oxidized glutathione in both the red

blood cells and the blood plasma. I think the price for this is

$200. If a person has to ship the samples, as you would from Texas

to Beverly Hills, then I think the only result that will be

significant is the total glutathione, not the reduced vs. oxidized

parts. Nevertheless, this will give you some information about your

glutathione status.

I hope you will hang in there, Bob, and as I've said, try to be

patient. These researchers are not our enemies; they are our

friends. None of us is perfect. We are all we have. Let's try to

stick together.

Still your friend,

Rich

> Rich, you are very familiar with the MP. I know you are intrigued

by

> it but you haven't come out and said what you thought were the

> dangers of it? Do I need GSH IV's?

>

> Bob

[Guest guest]

> Hi, Bob.

>

> I hope that you will understand that the Marshall protocol is one

of

> those things that is right at the cutting edge, right at the

> frontier of research. The reason you haven't read a lot of

critical

> comments about it from me is that I, like everyone else, am

learning

> as the results come in from the brave pioneers, like yourself, who

> have been trying it.

Rich, I also believe it is on the cutting edge but do you think it

is even POSSIBLE that TM could have all the answers on such complex

diseases?

He has a protocol that has

> worked on his own disease, sarcoidosis. He has seen that it has

> also helped others with sarcoidosis,

Rich, I have heard that his protocol hasn't worked for that many

sarc patients. Heresay I know. I don't believe everything I hear or

read. Yes, it hard somedays to have patience but I know that you

feel our pain and is understanding. You are quite a man. That is one

reason I find it hard to understand why you are so sold on a man who

none of us even know?

> I hope you will try to understand what Dr. Marshall is up

against.

> Sure, if he turns out to be right about all the diseases he thinks

> will be helped by his protocol, and if he lives long enough, he

will

> get a lot of credit eventually, and in that case, I think he will

> also stand a good chance of getting the Nobel prize in medicine

and

> physiology.

My goodness, are you ready to award him the Nobel Prize for

Medicine? Rich, this man has strangge influence. Kind of like the

Pied-Piper. I would not begrudge him fame and fortune if he can do

what he claims. shouldn't the claims be proven first?

I'm hopeful that the Marshall

> protocol will end up being a successful treatment for a

substantial

> subset of PWCs. I don't believe it will end up being universal.

If I understand TM correctly, the MP is good for all PWC's. You may

have read Joanne's post yesterday where she said she was on her 38th

day of the MP and was not working. She wanted to know when she

should consider the MP a failure for her and TM told her that it may

take her longer than others (which is true for some) but WHEN do a

PWC realize the MP is not good for his/her subset? TM seems to think

it is good for all PWC's.

>

I gather from the

> discussions that it can lower the blood pressure, but so far that

> doesn't seem to have hurt anyone who is trying it. I've seen

> references to herxheimer reactions that can be very severe if the

> protocol is not regulated carefully in some cases.

My bp never came up. I was dizzy most days. after 6 weks it could be

75/40 and I would feel horrible. The herxing is what drove me off of

the MP. Benicar didn't help there at all??

I hope you will hang in there, Bob, and as I've said, try to be

> patient. These researchers are not our enemies; they are our

> friends. None of us is perfect. We are all we have. Let's try

to

> stick together.

>

> Still your friend,

>

> Rich

It is easier to hang in there when you know people like you care and

are trying to figure it out since most of us have cognitive problems.

Rich, you never did answer if a PhD has to have signed statements

before giving medical opinions? Also, the MP calls for getting off

of all medication. what do you think about people like me getting

off of my Effexor, Neurontin and klonopin? I can understand TM

wnating trials where patients are on nothing but his protocol but it

seems dangerous to ask depressed and psychotic people to get off

their medication.

rich, I want TM to be part of finding answers to our illness. It

seems that TM has his mind made up and he does not listen to Tony,

Dr Cheney or anyone. It seems to me that it is arrogant for a

researcher to start treating and illness in which countless

brilliant researchrs have spent 15-20 years researching CFS, then

they read where there ideas are ridiculed. Aren't you the least bit

curious of why Dr Cheney thinks that benicar is NOT the right drug

and may actually cause more inflammation? I don't have $510/hour or

I would call him for a phone consult...lol

Rich, in closing, I want to be part of the solution and not the

problem. I am post-graduate educated but in business. I am losing

the ability to understand the more complexity of what is being said

about CFS lately. I wished we were talking groceries...lol I think

I asked TM some proper question when I was on the MP list then

people like Suzanne told me to quit running my mouth and let TM get

about his work. Sounds like what Clinton told us when he was being

asked about Lewinsky. I am going to stop posting about TM. It

seems like he should run for president. Being ill 29 years and

trying every protocol around, I would like to see some success

stories before we award TM the Nobel Prize.

Bob

[Guest guest]

>

> i just rejoined this list yesterday and it sounded like there was

some arguing or something going on about the copyright law...but i

am copy/pasting part of someone's message here for bob, for his

bp/dizzines..

Thanks angela. Concerning the copyright law, Ken has said it is

illegal to copy and paste someone's posting uw/o their permission. I

am still having a hard time in believeing this to be true. If Rich

post something on Co-Cure, I can't forward his posting w/o his

permission. I can't even copy and paste but apparently I can include

a link which will take someone to Rich's posting and this is okay?

If ken is right (and he normally is) I see people copy and pasting

things everyday so I guess all of us are guilty as charged.

, since being off of the benicar, my bp has returned to

normal, for me, 90/65. I still have 91 pills left. Think I will lurk

and see people get well first. a is one who is saying she is

feeling much better on the MP however she also posted that she is

suffering from severe fatigue?????

Is it okay to retell what someone said in a post?

Bob

[Guest guest]

Bob, rather than sell your Benicar why not try taking just one 40mg at night

and see if that is better than not taking any at all. This would be similar

to Dr. Moskowitz trial of ARB's single day dose to help immune system.

Also, maybe go back to the doc who gave you the Benicar and talk to him about

Moskowitz and maybe try a few ARB's that way, once a day. It would certainly

be

cheaper.

I was just about to take a Benicar at night only b/c I had a rough past 4

days and even felt those dirty flu-like symptoms come on with deap aching down

into lower legs. All started with stiff achy back of neck. Today was first

good day though so I weathered the storm. I am not sure it came from

over-rifing or what. I drug myself in to workout Sun and the sauna was not on

so I

had to work out with detox first and paid the price with feeling worse after

workout instead of better. I swear, I just LOVE traditional sauna and it

still saves my arse to this day. I can drag myself in to work out and do sauna

first and then get moving around and stretching and the endorphins kicking

and walk out a new man. Exercise would probably do me even more good but that

I tend to overdo it b/c I want to avoid being skinny as I used to be when I

was at my sickest and had lost weight.

I had been doing great with no bad days like that ever since rifing 5 weeks

ago and then had the best success ever when I switched to staph frequencies

and then boom, out of nowhere came these damn CFS symptoms. There went the

water mellon grin I was walking around with. No more frowns though as today

was decent day. I just tried 9 Doug frequencies that Doug originally used when

he viewed Bb on microscope slide and found which frequencies would damage or

kill the spirochetes, so will see if I feel anything from it--never tried

them before but reaction to them would suggest is is lyme in me causing

problems or being killed off. I'm actualy considering building a Doug unit if

I get

around to getting more money. Not sure about that yet but it would be fun

since it is the beast when it comes to outright power. But I'm happy with my

other two rife machines, the plasma BCX device being my favorite ever used so

far. But I won't hesitate to whip out a Benicar at night to save me in the

future if I ever feel another one of these ordeals coming on.

In a message dated 8/4/2004 10:45:04 AM Eastern Daylight Time,

writes:

, since being off of the benicar, my bp has returned to

normal, for me, 90/65. I still have 91 pills left. Think I will lurk

and see people get well first. a is one who is saying she is

feeling much better on the MP however she also posted that she is

suffering from severe fatigue?????