3 day Benicar trial run and results

[Guest guest]

Jill, that's an incorrect statement, " WHen I went through posts on

the sarc list a while back and some had normal Vitamin D levels. "

No one's reported " normal vitamin D levels " , and since you last

checked, quite a few people have had their Ds tested.

You don't have to be interested in this new research, but if you're

not going to make the effort to research what we're discussing, then

I don't think it's very sound for you to be giving advice about it.

For those who ARE interested, like , then they would do well to

research the protocol and the science behind it before deciding to

proceed. If has done this research and wants to do a little

self test to see if he feels better staying out of the sun and

limiting vitamin D intake, I doubt very much if he's going to harm

himself or his bones. I'm not sure why you want to try to scare

someone in this way. Do you make such statements about the lack of

all vitamin/mineral supplementation?. Or is it that you've just got

something against the Marshall Protocol?

The fact is that even present conventional wisdom says that 10

minutes of sun per day is all that's needed for healthy vitamin D

production. What we're talking about is a problem with vitamin D

metabolism that is a direct result of infection/inflammation that

may be a big part of our illness. It's certainly just as worthy

exploring these very well researched theories as all of the other

experimental avenues that get so much attention. And this is a whole

lot safer than many. Limiting vitamin D for a short time is cheaper

than lab tests, and isn't going to kill .

penny

> > > Penny, you write:

> > >

> > > So

> > > > far, every single PWC who never thought they had a problem

with

> > D

> > > > metabolism has turned out to be just the opposite when

tested.

> > >

> > > I am curious how you can make this statement with such

> > confidence?

> > > Some who've gotten tested have not had Vitamin D problems,

from

> my

> > > lurking on the lists. How many is " every single PWC " ? Can you

> > give

> > > me a #? How many are you directly in contact with? Thx.

[Guest guest]

Hi Penny

Actually I didn't do it properly - I built up the dose rather than

starting in at 40mg tid (caution by my doctor, yet now my BP is

perfect!!), plus I continued to take supplements.

Looking back, I find it " interesting " that I get a neuroherx just over

48 hours after finishing the vitB - a vitamin known to feed bacteria -

look at how often vitB is used in petri dish media.

Dave

> >

> > Hi

> >

> >

> > > I am curious how you can make this statement with such

> confidence?

> > > Some who've gotten tested have not had Vitamin D problems, from

> my

> > > lurking on the lists. How many is " every single PWC " ? Can you

> give

> > > me a #? How many are you directly in contact with? Thx.

> >

> > I have lurked on the list too and I don't think that many pwcs

> have reported

> > vit D problems because very few people seem to have been tested so

> far

> > particularly as many live in the UK where testing is difficult to

> organise.

> > There have also been one or two bad experiences with the Benicar

> which seem

> > to be being largely downplayed

> >

> > Having said that I don't think that initial bad reactions

> necessarily mean

> > that the Marshall Protocol doesn't work. Marshall himself says it

> may be

> > difficult for those who are severely affected/with high pathogen

> loads to

> > get on to the benicar and that they may need a month or so on

> antibiotics

> > first - infact I think the protocol may be very promising

> >

> > My problem is that I think that any discussions/reports about the

> marshall

> > protocol should include the negative aswell as the positive

> experiences and

> > then people can make their own minds up. At the moment the

> negative reports

> > are being played down or people are saying that those that have

> negative

> > effects are not following the protocol properly

> >

> > I find this particularly annoying because this is the same

> attitude that

> > most doctors have taken and I honestly think that pwcs should know

> better

> > after all the years we've had to put up with this kind of thing.

> >

> > Personally I think that those that are passionate about the

> protocol should

> > lead by example. That is follow the protocol and prove it works

> long term

> > by getting better whilst promoting the protocol in a gentle and

> balanced

> > fashion. People are persuaded by actions not by strong arguments

> > particularly those that don't have much evidence to back them up

> >

> >

> >

> >

> > >

> > >

> > >

> > >

> > > 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.

> > >

[Guest guest]

Penny, you have a marshall protocol list. Can you let this list be

free for open discussion, instead of squelching it here, too? No

offense but there should be SOME list where we can ask questions and

be doubtful while interested.

[Guest guest]

Jill, of course you can discuss anything you want. But if you're

going to make erroneous statements about something you haven't

researched, I have every right, and actually, a responsiblity

towards those who don't know better, to correct them.

penny

> Penny, you have a marshall protocol list. Can you let this list

be

> free for open discussion, instead of squelching it here, too? No

> offense but there should be SOME list where we can ask questions

and

> be doubtful while interested.

[Guest guest]

> Jill, of course you can discuss anything you want. But if you're

> going to make erroneous statements about something you haven't

> researched, I have every right, and actually, a responsiblity

> towards those who don't know better, to correct them.

Penny, first of all, the protocol is still experimental, and even if

Trevor Marshall is very smart and original, there is much that is not

known about Vitamin D and about benicar and low dose antibiotics and

certainly not how they will affect those with mixed infections,

including notoriously recalcitrant tickborne infections, along with

viruses, etc--babesia, rickettsia and so on. So you do your best to

correct according to your knowledge as it stands today. Others have a

right to question that.

Secondly, you weren't only correcting, you were being openly

antagonistic to me. Here are some snips from your post:

I don't think it's very sound for you to be giving advice about it.

I'm not sure why you want to try to scare someone in this way.

is it that you've just got something against the Marshall Protocol?

Etc. There's no need to write to me this way. seems to have

done well on his protocols and to be a fairly active person, I've

followed his posts for a while and from all I can see he has regained

a good deal of health compared to others on these lists. I

personally think eliminating Vitamin D, eggs, sun etc from his diet

unless he has good evidence of a skewy ratio, is not wise. I have a

right to say this. doesn't scare easily and there was no

intent to scare him. So don't attack my statements, please. That is

indeed trying to squelch open discussion and opinion.

[Guest guest]

I will say that doing MP is experimental, whether under care of a doc or not.

My doc knows I put a lot of time into research for instance and so gladly

sent me samples with a prescription. Starting at full dose 40mg 3X day was

really piece of cake. Also, even after a few days of being off now I am still

feeling much better than I was before I started, so it is similar in a way to a

dose of abx to me. I felt lousy since coming back to NC beginning of May and

this was first thing to give me a little more umph, other than when I first

tried tumeric by itself, but what I discovered about tumeric is the effect only

lasts for so many days.

Seems like everyone reports similarly: that the tumeric or other meds quit

working after a couple weeks. So a great # of these modalities are best used in

rotation perhaps.

Hopefully Benicar will be something that continues to last past a couple

weeks, maybe forever, who knows. Lyme friend of mine just got sunburned and

said

she has swelling in shins so now is aware of maybe getting too much Vit D.

Interestingly, if bugs need to come out and play in order for rife to work well

then maybe summer time is best time for me to do rife and worry about doing

Benicar at end of summer when it would be more likely to work with a lowered Vit

D level if I truly do suffer from D hypervitaminosis (again, guessing b/c no

testing to prove it one way or another, but hopefully unanimous D metabolite

test results will yield some consistent results in our camps). I appologize to

those wanting to see me as a CFS model of how one might do under MP as I do

fit the CFS type for sure, having been to 4 docs and diagnosed as CFS and even

two LLMD's, Shoemaker being one of them and telling me I have his CFS genotype

and not diagnosing me as lyme (not that I agree with all that and don't think

I have lyme as a cause).

Interestingly, as discussion on MP involved talking about Th1/Th2, it was

said that a very low NK assay result is proof of excessive Th2 by Dr.

Klimas, and yet I did their test and was indeed VERY low on that, probably much

lower than anyone on this list back when I took it in 2001 according to others

who shared their results over the years. May be apples and oranges but when I

did a hospital NK assay, after doing chelation, bee venom therapy and finally

Chisolm TF, every one of my NK cells was w/i the refernce range, including the

CD57 that Dr. Stricker likes to use for lyme progress--this was back when I

was just beginning to lesson my crashes that I used to experience with

exercising and the crashes turned into only mini-crashes. The U. of Miami NK

test did

not have CD57 listed when I did it, so it is apples and oranges, and U. of

Miami lists both function % and # of cells if I'm not mistaken, whereas hospital

lab or Labcorp only lists function?

My point in bringing up Th1/Th2 is that if I am Th2 then I still felt better

on Benicar which would suggest that all CFSers are Th2 is erroneous. Of

course I only did a 3 day course, so who knows if I would have felt even better

by

2 weeks time, especially if I had no sun exposure and minimum Vit D in diet.

My best guess is that if you get sick as a dog on abx then you MIGHT have more

difficult transition taking Benicar compared to one who does well on abx

right away. It might have to do with how affected you are with bugs as lesser

infected individuals may do better on Benicar right away, with highly infected

individuals having to go through herxing/transition period just as they would if

they started abx. Could be totally wrong about this though. My guess for

instance is seeing how Bob H. seems to tollerate abx in past or even felt cured

when he did Augmentin for a few days I would bet my chips that if he starts

off at 40mg 3X day he will do ok. We'll see. FWIW.

In a message dated 6/12/2004 11:18:27 AM Eastern Daylight Time,

writes:

Penny, first of all, the protocol is still experimental, and even if

Trevor Marshall is very smart and original, there is much that is not

known about Vitamin D and about benicar and low dose antibiotics and

certainly not how they will affect those with mixed infections,

including notoriously recalcitrant tickborne infections, along with

viruses, etc--babesia, rickettsia and so on.

[Guest guest]

Hi ,

If you read the latest D research coming out of UCLA, there are

supposedly 4 categories of people and the way they metabolize D.

That's all I know, except that some people supposedly do have a

genetic predisposition that makes them unable to metabolize D

regardless of their environmental circumstances. That could possibly

apply to some of us. But according to Trevor's research, the poor D

metabolism in most of our cases is due to the inflammation our

bodies are dealing with caused by the bacterial load. If you rid

yourself of the bacteria, and the subsequent inflammation, your Ds

(remember D is a hormone precursor and 1,25D is a hormone itself)

become balanced along with the other hormones, and you can once

again start metabolizing Ds normally. The D reduction and sun

avoidance is not a permanent requirement, only necessary until one

has recovered.

Not making this up. There's lots of research to back it up, it's

there for the looking. Much is provided at the sarc info site.

That's the good thing about Dr. Marshall. He doesn't just throw out

theories, he backs them up with loads of research. If it is

something still in the hypothetical stage, he makes that very clear.

He's still learning, too, afterall. Probably the most open

researcher I've ever encountered.

penny

> Thanks for the concern. Until the end of summer though I think it

is

> impossible that I not get enough Vit D b/c of all the sun I'm

around. By end of

> summer hopefully we will see more test results come in--not

scientific but

> hopefully I can draw some conclusion as to how we test as a group

for D metabolites.

>

> Penny, you said the D metabolites being screwed up come about as a

result of

> the illness and not the other way around? How do you know this

for sure?

> Just like I read Ken talking about genetic involvement of

hypercoagulation, who

> is to say we don't have too much Vit D before getting sick b/c of

our genetics?

>

>

> In a message dated 6/12/2004 11:18:27 AM Eastern Daylight Time,

> writes:

> For to stay out of the sun and stop taking VItamin D which

is

> so important to health, before testing himself, seems hazardous to

> health. Vitamin D helps prevent cancer and build bone and is very

> important to health.

>

>

>