Re: Penny -light avoidance

[Guest guest]

Roy, I don't know if this is humorous or tiresome. It's a bit of a flashback with the rationalizations and accusations when the protocol doesn't work for someone. I sure hope you're not wasting your time strategizing about how to 'deal with' me. It doesn't matter that I took extreme measures to avoid light in the protocol (in the beginning). I was willing to give it a shot (and make my family do it as well), especially since my daughter is light & milk sensitive so I thought there might be something to the vitamin D thing, despite my own preference for sun. The bottom line is that sun avoidance has nothing to do with the fact that I CAN"T TAKE MINOCYLINE, a mainstay of the protocol, because not only did it mess with my thyroid (a known side effect) sending me to the emergency room, it causes PSEUDOTUMOR CEREBRI (Intercranial

hypertension) in some people, which turns out happened to me. I was DEATHLY ill on minocycline (ask my family) and while I was sick and thinking that I could very seriously be dying, my symptoms were being ignored or written off as "herx". Not by my doc though. He made me stop minocyline and put me on different abx. And that's about the time I got "officially" booted because I wasn't doing it "correctly". Heard similar stories time and again. But now you tell me the protocol is using up to 5 different abx. Too funny. Actually, it's not funny at all. From my perspective, there was ZERO compassion for people's very real pain and suffering. If you didn't succeed, it was because you were doing it wrong...goodbye. If relieving pain and suffering is not the motivating force behind a "non profit" protocol, then I have to seriously question what is the motivation? Based on history,

there's not much left other than ego, pride and a need for total control. You probably don't realize that the protocol wasn't even yet fully formulated, as far as the abx goes, when it went public on our list. It was still evolving and being tinkered with. That would have been fine if there hadn't been such rigidity about anyone else adapting the protocol to their needs, especially when recommended by their doctors. The other big eye opener for me regarded the serious warning that using Benicar with normal doses of abx was "dangerous"...only LOW dose abx could supposedly be combined with benicar safely. That turned out, in my experience, to be completely untrue. Once I was officially 'off the protocol', I started taking higher doses of abx (with serious trepidation) along with the Benicar. Guess what? No problem at all. And I started feeling better

and better. If people were to react negatively to normal or higher doses of abx, I see no evidence that Benicar has anything to do with it. It doesn't appear to potentiate abx at all except perhaps by allowing the blood to move more easily through relaxed blood vessels. But if this were a real health concern, the manufacturer would at least caution against combining it with abx in the package insert. When I started the protocol, I knew I had a highly resistant, chronic infection, resistant to over a dozen abx. I was mainly interested in killing that infection and was willing to try something experimental, especially something making such tremendous claims. The Benicar worked great for quieting many of my inflammatory symptoms for a while, but the ABX required on that protocol were not capable of killing my infection. Seriously, if the

same 3 abx, at low doses, were capable of killing every infection, drug companies wouldn't have created dozens more of them or recommended the dosages they do. I'm not saying that low doses may not be doing something for some people, I won't discount other people's experience that way. But to claim that low doses of only 3 abx will help EVERYONE!?! It seems pretty far fetched to me. Combine the rigidity and the contradictions with a controversial view on vitamin D, and I don't understand why anyone would be surprised when the protocol is met with skepticism by more than a few. royx31 <roysno@...> wrote: Penny,how closelydid you follow the light avoidancefor your skin and eyes?Roy .

[Guest guest]

Penny,

You wrote " I took extreme measures to avoid light in the protocol (in

the beginning). "

but on LymeNet on May 8, 2004 you wrote:

" I LOVE the sun. I am a light addict. Feel awful in dark rooms, so if

I've got elevated Ds I'm going to be in big trouble.

I AM however, making an effort to wear UV protective sunglasses more,

and I can tell you that the Benicar is having a remarkable effect on

the way I feel, so perhaps the D is not an issue for me. "

http://tinyurl.com/ytperp

Roy

> Penny,

> how closely

> did you follow the light avoidance

> for your skin and eyes?

> Roy

>

>

> Visit Your Group

> FruitaB?nts

> Healthy Eating Zone

> A parenting resource

> on .

>

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>

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[Guest guest]

Roy, I guess you'd rather be right than well? Are you seriously telling me that you're wasting whatever little energy you have on this? To what end? It's not going to change anything whatsoever. That's what you guys just don't seem to get. If you want to be successful, you can only focus on yourselves, not on fighting the rest of the world. Not on silencing every critic. I think any good football team or political strategist or celebrity could tell you that. All you're doing is keeping the controversy alive. And where does this complete self absorption and lack of concern for others come from? People reported being extremely ill, even near death. One person reportedly died. Others who were so sick just disappeared. We don't know what happened to them. It's scary how few people seemed to find that a cause for concern. People that self centered shouldn't be advising others, IMO. But episodes like this

were completely glossed over. Just for the sake of being right???? It's so disappointing. It's something I came to expect from some people, but not you. And to claifry my own experience, as you can see by the post you quoted, I was just beginning the program. Hadn't even had my Ds tested yet. I'd been on Benicar for a few days and acknowledged that it was going to be difficult for me if I needed to avoid light. My D ratio was borderline. My daughter's was high. You can ask my family how they felt when they were being subjected to dark rooms for my sake. I wore gloves and hats and sunglasses every time I went out in my car! I avoided my favorite room in the house and stayed holed up in the darkest room of the house, which is very dark. I even special ordered powdered milk on line without D. I did the very best I could, and considering how I lived prior to that, it was a HUGE change for

me, which should have resulted in at least some effect. I know my body and how it responds. My daughter, when she avoids sun or milk, feels better. That doesn't happen for me. Just the opposite. As time went on, and my confidence in the protocol waned, and I ended up in the emergency room, and Tony Norman, the D expert who was constantly being quoted on mp.com, refuted the claims being made about the D ratio, I decided the experiment was over. Not enough evidence to support it for me. And as soon as I stopped the protocol and started a more effective abx combo, the brain fog cleared and I was glad to be working with my trusted doctor rather than people who could care less about folks like me who weren't responding the way we were supposed to. pennyroyx31 <roysno@...> wrote: Penny,You wrote "I took extreme measures to avoid light in the protocol (in the beginning)." but on LymeNet on May 8, 2004 you wrote:"I LOVE the sun. I am a light addict. Feel awful in dark rooms, so if I've got elevated Ds I'm going to be in big trouble. I AM however, making an effort to wear UV protective sunglasses more, and I can tell you that the Benicar is having a remarkable effect on the way I feel, so perhaps the D is not an issue for me."http://tinyurl.com/ytperpRoy> Penny,> how closely> did you follow the light avoidance> for your skin and eyes?> Roy> > > Visit Your Group > FruitaB?nts> Healthy Eating Zone> A parenting resource> on .> > Health> Looking for

Love?> Find relationship> advice and answers.> > Biz Resources> Y! Small Business> Articles, tools,> forms, and more.> > > > .>

[Guest guest]

Geez Penny... I was trying to figure out what happened in your case,

but since you continually put words in my mouth and hurl insults at

me, I'll pass. I was going to ask you what tests you had done for

the diagnosis of pseudotumor cerebri, and whether they had returned

to normal.

Roy

BTW, my energy and health continue to improve.

> > Penny,

> > how closely

> > did you follow the light avoidance

> > for your skin and eyes?

> > Roy

> >

> >

> > Visit Your Group

> > FruitaB?nts

> > Healthy Eating Zone

> > A parenting resource

> > on .

> >

> > Health

> > Looking for Love?

> > Find relationship

> > advice and answers.

> >

> > Biz Resources

> > Y! Small Business

> > Articles, tools,

> > forms, and more.

> >

> >

> >

> > .

> >

>

[Guest guest]

Sorry, Roy, if I've been misreading you, but I feel like you are continuously questioning my integrity. You'd be defensive too if you'd been through what I've been through, even if you did find it so easy to dismiss in one of your earlier posts. All things aside, I'm very glad you are improving and I hope you continue to fully restored health. pennyroyx31 <roysno@...> wrote: Geez Penny... I was trying to figure out what happened in your case, but

since you continually put words in my mouth and hurl insults at me, I'll pass. I was going to ask you what tests you had done for the diagnosis of pseudotumor cerebri, and whether they had returned to normal.RoyBTW, my energy and health continue to improve.> > Penny,> > how closely> > did you follow the light avoidance> > for your skin and eyes?> > Roy> > > > > > Visit Your Group > > FruitaB?nts> > Healthy Eating Zone> > A parenting resource> > on .> > > > Health> > Looking for Love?> > Find relationship> > advice and answers.> > > > Biz Resources> > Y! Small Business> > Articles, tools,> > forms, and more.> > > > > > > > .> >>

[Guest guest]

Roy

I'm a tad confused..Your claiming that garlic is alot more potent

while on benicar? what your breath smells five times as much?

Man!! why are people brainwashed? America's best lyme diseases

doctor, I was told, will fire you as a patient if you play with his

multi drug regime..especially if you start doing the lower the dose

tinkering crap..He has thirty years of experience and only see's GOOD

RESULTS with patients doing the hard multi pharmaceutical yards.This

other angle(mp) has only been around just over three- I think people

would like to go with serious doctors and protocols, not pretend

doctors..

> > > Penny,

> > > how closely

> > > did you follow the light avoidance

> > > for your skin and eyes?

> > > Roy

> > >

> > >

> > > Visit Your Group

> > > FruitaB?nts

> > > Healthy Eating Zone

> > > A parenting resource

> > > on .

> > >

> > > Health

> > > Looking for Love?

> > > Find relationship

> > > advice and answers.

> > >

> > > Biz Resources

> > > Y! Small Business

> > > Articles, tools,

> > > forms, and more.

> > >

> > >

> > >

> > > .

> > >

> >

>

[Guest guest]

Tony,

Do you know who this Lyme doctor is?

I too would fire any "serious" Lyme patient who didn't realise "serious" multi abx regimens are the only way to go, but finding the right combo for each patient is the hard trick as the multi bug infectious cocktails many Lyme patients are carrying are difficult to ID and therefore hard to treat.

On the other hand, "having Lyme" is such a hard entity to define, my take is that we don't all have the same infectious cocktail and some of us can probably get away with more fooling around than others.

Nelly

[infections] Re: Penny -light avoidance

RoyI'm a tad confused..Your claiming that garlic is alot more potent while on benicar? what your breath smells five times as much?Man!! why are people brainwashed? America's best lyme diseases doctor, I was told, will fire you as a patient if you play with his multi drug regime..especially if you start doing the lower the dose tinkering crap..He has thirty years of experience and only see's GOOD RESULTS with patients doing the hard multi pharmaceutical yards.This other angle(mp) has only been around just over three- I think people would like to go with serious doctors and protocols, not pretend doctors..> > > Penny,> > > how closely> > > did you follow the light avoidance> > > for your skin and eyes?> > > Roy> > > > > > > > > Visit Your Group > > > FruitaB?nts> > > Healthy Eating Zone> > > A parenting resource> > > on .> > > > > > Health> > > Looking for Love?> > > Find relationship> > > advice and answers.> > > > > > Biz Resources> > > Y! Small Business> > > Articles, tools,> > > forms, and more.> > > > > > > > > > > > .> > >> >>

[Guest guest]

Nelly

I know he's in New York-Burrescano, I think, is the dude..You'd know

if it's the guy, because he's been at it 30 years.I'm not that upto

date with LLMD's..but pretty sure it's him..

He also knows how to get people better, but finds it difficult to

stop them relapsing ..

tony

> > > > Penny,

> > > > how closely

> > > > did you follow the light avoidance

> > > > for your skin and eyes?

> > > > Roy

> > > >

> > > >

> > > > Visit Your Group

> > > > FruitaB?nts

> > > > Healthy Eating Zone

> > > > A parenting resource

> > > > on .

> > > >

> > > > Health

> > > > Looking for Love?

> > > > Find relationship

> > > > advice and answers.

> > > >

> > > > Biz Resources

> > > > Y! Small Business

> > > > Articles, tools,

> > > > forms, and more.

> > > >

> > > >

> > > >

> > > > .

> > > >

> > >

> >

>

>

>

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>

>

[Guest guest]

Yep, that's the man: Joe Burrascano, a good guy, he has stopped treating patients but he is still involved in Lyme research.

Nelly

[infections] Re: Penny -light avoidance

NellyI know he's in New York-Burrescano, I think, is the dude..You'd know if it's the guy, because he's been at it 30 years.I'm not that upto date with LLMD's..but pretty sure it's him..He also knows how to get people better, but finds it difficult to stop them relapsing ..tony> > > > Penny,> > > > how closely> > > > did you follow the light avoidance> > > > for your skin and eyes?> > > > Roy> > > > > > > > > > > > Visit Your Group > > > > FruitaB?nts> > > > Healthy Eating Zone> > > > A parenting resource> > > > on .> > > > > > > > Health> > > > Looking for Love?> > > > Find relationship> > > > advice and answers.> > > > > > > > Biz Resources> > > > Y! Small Business> > > > Articles, tools,> > > > forms, and more.> > > > > > > > > > > > > > > > .> > > >> > >> >> > > > > >

[Guest guest]

Apparently he has just completed his 2007 dvd presentation. I also

think he is still helping patients, maybe not taking on new ones..

tony

> > > > > Penny,

> > > > > how closely

> > > > > did you follow the light avoidance

> > > > > for your skin and eyes?

> > > > > Roy

> > > > >

> > > > >

> > > > > Visit Your Group

> > > > > FruitaB?nts

> > > > > Healthy Eating Zone

> > > > > A parenting resource

> > > > > on .

> > > > >

> > > > > Health

> > > > > Looking for Love?

> > > > > Find relationship

> > > > > advice and answers.

> > > > >

> > > > > Biz Resources

> > > > > Y! Small Business

> > > > > Articles, tools,

> > > > > forms, and more.

> > > > >

> > > > >

> > > > >

> > > > > .

> > > > >

> > > >

> > >

> >

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> >