Re: What is wrong with Jill?

[Guest guest]

Jill (oxygenbabe) wrote " these people are absolutely blithely unmoved

by it. "

That is ridiculous Jill.

Ken Lassessen posted last Saturday on his group:

" This is a FYI that Jill1313 is no longer on this group (she left on

her own accord - a private back channel email from me may have

contributed).

People with CFIDS often have problems, I always say " It's the CFIDS

talking and not the person " .

I believe the absence of her posts may contribute to an improvement

in quality of discussion. "

What's wrong with Jill?

Roy

> > >

> > > Barb & Penny thanks for coming to lymenet.

> > > I don't understand why she couldn't have just stayed on the MP

site.

> > > Her posts are absolutely flabbergasting.

> > > Someone posts that in her small support group 3 people on MP had

> > > serious issues with kidneys or hypotension--one had kidney

damage

> > that

> > > took 8 months to repair.

> > > Another person named Joyce starts a thread about Vitamin D and

brain

> > > lesions.

> > > They are like cultists.

> > > There is *no* such thing as a bad reaction or side effect. It

is all

> > > herx. Those poor folks had high pathogen loads in their

kidneys.

> > These

> > > people have absolutely no reaction to the fact that others were

> > > severely damaged. They seem sociopathic--there is no concern, it

> > > doesn't even register, they are so hypnotized.

> > >

> > > She even posts that Vitamin D doesn't have to be high--

> > (inflammatory),

> > > that the protocol works no matter what.

> > >

> > > Benicar, is switching on the innate immune system!

> > >

> > > The science they quote is shoddy or else Marshall endlessly.

> > >

> > > I'm disgusted so venting here.

> > > They should have stayed off lymenet.

> > > In addition several have requested she change the header of her

> > thread

> > > and eliminate the word " cure "

> > >

> > > When I asked if ANYBODY had gone off their drugs and stayed

well, it

> > > was ignored. One person posted its too early for lyme.

> > >

> > > Why come on and promote the protocol in the first place?

> > >

> >

>

[Guest guest]

Thanks for letting me know the whole post which he didn't, even when

another member backchanneled me that it was a " disgrace " he'd " urged "

me off the list.

I had left the list. He knew that as I informed him. It had nothing to

do with an email of his because it came *after* I unsubscribed (I

don't know if the moderator gets notified when people unsubscribe or

not). I have no idea why he publicly posted that, as if he had pushed

me off, as his private emails to me were quite different. When I asked

what he said on the list, after being backchanneled, he only quoted me

the first two lines!

So now I know the whole post. So that's interesting.

> > > >

> > > > Barb & Penny thanks for coming to lymenet.

> > > > I don't understand why she couldn't have just stayed on the MP

> site.

> > > > Her posts are absolutely flabbergasting.

> > > > Someone posts that in her small support group 3 people on MP had

> > > > serious issues with kidneys or hypotension--one had kidney

> damage

> > > that

> > > > took 8 months to repair.

> > > > Another person named Joyce starts a thread about Vitamin D and

> brain

> > > > lesions.

> > > > They are like cultists.

> > > > There is *no* such thing as a bad reaction or side effect. It

> is all

> > > > herx. Those poor folks had high pathogen loads in their

> kidneys.

> > > These

> > > > people have absolutely no reaction to the fact that others were

> > > > severely damaged. They seem sociopathic--there is no concern, it

> > > > doesn't even register, they are so hypnotized.

> > > >

> > > > She even posts that Vitamin D doesn't have to be high--

> > > (inflammatory),

> > > > that the protocol works no matter what.

> > > >

> > > > Benicar, is switching on the innate immune system!

> > > >

> > > > The science they quote is shoddy or else Marshall endlessly.

> > > >

> > > > I'm disgusted so venting here.

> > > > They should have stayed off lymenet.

> > > > In addition several have requested she change the header of her

> > > thread

> > > > and eliminate the word " cure "

> > > >

> > > > When I asked if ANYBODY had gone off their drugs and stayed

> well, it

> > > > was ignored. One person posted its too early for lyme.

> > > >

> > > > Why come on and promote the protocol in the first place?

> > > >

> > >

> >

>

[Guest guest]

Roy Snow,

How are you doing on the MP?

Thanks for any reply,

a Carnes

>

> Jill (oxygenbabe) wrote " these people are absolutely blithely

unmoved

> by it. "

> That is ridiculous Jill.

>

> Ken Lassessen posted last Saturday on his group:

> " This is a FYI that Jill1313 is no longer on this group (she left

on

> her own accord - a private back channel email from me may have

> contributed).

> People with CFIDS often have problems, I always say " It's the CFIDS

> talking and not the person " .

> I believe the absence of her posts may contribute to an improvement

> in quality of discussion. "

>

> What's wrong with Jill?

>

> Roy

>

>

>

>

>

> > > >

> > > > Barb & Penny thanks for coming to lymenet.

> > > > I don't understand why she couldn't have just stayed on the

MP

> site.

> > > > Her posts are absolutely flabbergasting.

> > > > Someone posts that in her small support group 3 people on MP

had

> > > > serious issues with kidneys or hypotension--one had kidney

> damage

> > > that

> > > > took 8 months to repair.

> > > > Another person named Joyce starts a thread about Vitamin D

and

> brain

> > > > lesions.

> > > > They are like cultists.

> > > > There is *no* such thing as a bad reaction or side effect. It

> is all

> > > > herx. Those poor folks had high pathogen loads in their

> kidneys.

> > > These

> > > > people have absolutely no reaction to the fact that others

were

> > > > severely damaged. They seem sociopathic--there is no concern,

it

> > > > doesn't even register, they are so hypnotized.

> > > >

> > > > She even posts that Vitamin D doesn't have to be high--

> > > (inflammatory),

> > > > that the protocol works no matter what.

> > > >

> > > > Benicar, is switching on the innate immune system!

> > > >

> > > > The science they quote is shoddy or else Marshall endlessly.

> > > >

> > > > I'm disgusted so venting here.

> > > > They should have stayed off lymenet.

> > > > In addition several have requested she change the header of

her

> > > thread

> > > > and eliminate the word " cure "

> > > >

> > > > When I asked if ANYBODY had gone off their drugs and stayed

> well, it

> > > > was ignored. One person posted its too early for lyme.

> > > >

> > > > Why come on and promote the protocol in the first place?

> > > >

> > >

> >

>

[Guest guest]

a,

There is a recent interview with Reenie about her progress on the MP

here: http://tinyurl.com/2acc7m , but it is on Amy's Bacteriality web

site and some people here will say that it is a pack of lies along

with everything on the MP web site.

I was sicker than Reenie to start, but am making steady progress.

For example, my very long-term constant pressure headaches are just a

bad memory now. My even longer-term weak leg muscles are also gone,

but they got weaker for a time. Last fall I tried walking over a

mile each day before dawn and it was no problem. I had been very

reluctantly considering moving into an assisted-living facility. I

don't want to give the impression that this is an easy treatment. It

has been long and very difficult. The neurological symptoms can get

especially unpleasant.

Jill thinks MP patients are stupid heartless weak willed cult members

who have to stay off other web sites. That kind of cruel and hateful

attitude does not lend itself to respectful and reasonable

discussion, no matter how eloquently stated by a journalist with an

unfair advantage in print. This is the worst group on the Internet

for it, and it is difficult to tolerate; even knowing more than ever

that the infection(s) are the underlying problem.

Roy

>

> Roy Snow,

> How are you doing on the MP?

>

> Thanks for any reply,

> a Carnes

>

>

>

> >

> > Jill (oxygenbabe) wrote " these people are absolutely blithely

> unmoved

> > by it. "

> > That is ridiculous Jill.

[Guest guest]

The thread is very informative now; see the later posts by

lonestartick, minoucat etc. The thread gives all views, including the

serious side effects experienced by people in Kelli's support group,

including near-kidney failure in one member, taking 8 months to

recover function.

Lonestartick showed a lot of compassion in her post; Amy's post about

the case above didn't pause to say, If someone suffered that much, I'm

so sorry, I know this protocol, like all, can have side effects.

Joyce, in another thread that unfortunately was very hard to read

because she didn't shorten the URL's, commented that she didn't

believe anybody had ever experienced psuedotumor cerebri on the

protocol (denying a patient ie Penny's experience by implication)

There is some good info by Mark London on the protocol now on

immunesupport, you probably have to register to read the thread. He

refutes the Vitamin D theory as expressed by the MP.

This doesn't mean some folks aren't getting better. Obviously they

are, and if they regain quality of life when other methods fail, then

that is certainly a good thing.

As for journalism, I try to keep a very low profile on the boards.

I've done my part for lyme in print several times.

> >

> > Roy Snow,

> > How are you doing on the MP?

> >

> > Thanks for any reply,

> > a Carnes

> >

> >

> >

> > >

> > > Jill (oxygenbabe) wrote " these people are absolutely blithely

> > unmoved

> > > by it. "

> > > That is ridiculous Jill.

>

[Guest guest]

Roy,

Sorry I missed this earlier today. I have been out of town and just

now catching up. Wow, so your head pressure cleared up. Do you have

any idea which antibiotic that seemed related to? I mean did one

particular antibiotic seem to fix that over time, or was it just

gradual?

Do you know Reenie personally? I do. I also know Meg and others.

Reenie, in my opinion, has never been as sick as I, nor am I even

sure her disease is related to mine. Meg and the other nurse had/have

sarc. I do not. My case is probably most like LoneStarTick.

Roy, I hope you continue to recover. I have found that in 12 years I

have almost recovered only to almost totally relapse and even get

much sicker in some ways - in particular the head pressure and

vertigo.

Thanks,

a Carnes

>

> a,

> There is a recent interview with Reenie about her progress on the

MP

> here: http://tinyurl.com/2acc7m , but it is on Amy's Bacteriality

web

> site and some people here will say that it is a pack of lies along

> with everything on the MP web site.

> I was sicker than Reenie to start, but am making steady progress.

> For example, my very long-term constant pressure headaches are just

a

> bad memory now. My even longer-term weak leg muscles are also

gone,

> but they got weaker for a time. Last fall I tried walking over a

> mile each day before dawn and it was no problem. I had been very

> reluctantly considering moving into an assisted-living facility. I

> don't want to give the impression that this is an easy treatment.

It

> has been long and very difficult. The neurological symptoms can

get

> especially unpleasant.

>

> Jill thinks MP patients are stupid heartless weak willed cult

members

> who have to stay off other web sites. That kind of cruel and

hateful

> attitude does not lend itself to respectful and reasonable

> discussion, no matter how eloquently stated by a journalist with an

> unfair advantage in print. This is the worst group on the Internet

> for it, and it is difficult to tolerate; even knowing more than

ever

> that the infection(s) are the underlying problem.

> Roy

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> >

> > Roy Snow,

> > How are you doing on the MP?

> >

> > Thanks for any reply,

> > a Carnes

> >

> >

> >

> > >

> > > Jill (oxygenbabe) wrote " these people are absolutely blithely

> > unmoved

> > > by it. "

> > > That is ridiculous Jill.

>

[Guest guest]

It might not be the abx at all. My head pressure was greatly relieved by the Benicar. It's one reason I was initially so excited about the drug. Feeling a non-pressurized head for the first time in ages was a huge thing. I also had a great reduction in migraines. Other people had the exact opposite effect, developing headaches, etc. My daughter at first felt the head pressure lighten way up with the ARB, but then started experiencing headaches whenever she lay down. She stopped the Benicar at that point. I continued with the Benicar for around 2 years. When I stopped, I found that Tramadol basically achieved the same thing the Benicar did as far as head pressure goes. Why, I'm not sure, but both drugs do some kind of dampening down of all sensation, at least in my case. So I'm not sure that Benicar actually reduced the head pressure or just dampened the sensation of head pressure somehow. While I found Benicar advantageous

(until my thigh muscles and groin began deteriorating more and more), other people I know are convinced it has done damage to them, i.e. to their bowells, finding elimination painful ever since taking the drug. When I really think about it, I'm not at all convinced that the short term inflammatory relief I had from Benicar has not been offset by longer term damage. I never experienced this much body pain until after I took Benicar. It was only after I went off of it that I seem to have developed body wide inflammation and pain. These varied experiences are just one reason more research needs to be done on the ARBs as an anti-inflammatory. penny pjeanneus <pj7@...> wrote: Roy,Sorry I missed this earlier today. I have been out of town and just now catching up. Wow, so your head pressure cleared up. Do you have any idea which antibiotic that seemed related to? I mean did one particular antibiotic seem to fix that over time, or was it just gradual?Do you know Reenie personally? I do. I also know Meg and others. Reenie, in my opinion, has never been as sick as I, nor am I even sure her disease is related to mine. Meg and the other nurse had/have sarc. I do not. My case is probably most like LoneStarTick.Roy, I hope you continue to recover. I have found that in 12 years I have almost

recovered only to almost totally relapse and even get much sicker in some ways - in particular the head pressure and vertigo. Thanks,a Carnes>> a,> There is a recent interview with Reenie about her progress on the MP > here: http://tinyurl.com/2acc7m , but it is on Amy's Bacteriality web > site and some people here will say that it is a pack of lies along > with everything on the MP web site. > I was sicker than Reenie to start, but am making steady progress. > For example, my very long-term constant pressure headaches are just a > bad memory now. My even longer-term weak leg muscles are also gone, > but they got weaker for a time. Last fall I tried walking over a > mile each day before dawn and it was no problem. I had been very > reluctantly considering moving into an assisted-living facility. I

> don't want to give the impression that this is an easy treatment. It > has been long and very difficult. The neurological symptoms can get > especially unpleasant.> > Jill thinks MP patients are stupid heartless weak willed cult members > who have to stay off other web sites. That kind of cruel and hateful > attitude does not lend itself to respectful and reasonable > discussion, no matter how eloquently stated by a journalist with an > unfair advantage in print. This is the worst group on the Internet > for it, and it is difficult to tolerate; even knowing more than ever > that the infection(s) are the underlying problem.> Roy> > > > > > > > > > > > > > > >> > Roy Snow,> > How are you doing on the MP?> > > > Thanks for any reply,> > a Carnes> > > > > > > > >> > > Jill (oxygenbabe) wrote "these people are absolutely blithely > > unmoved > > > by it."> > > That is ridiculous Jill.>

[Guest guest]

Penny

Yeah, they claim miracles occur with these drugs- but looking closer

with an open mind I find long termers are actually having many body

wide pains that don't occur in the early stages of an arb.. The early

testing of fresh patients see's a lot of that glamorous literature

written that is associated with arb's.. but in my opinion the truth

is out there in the longer termers..and I haven't seen anything to

convince me that they cure anything..The problem is anything

amplified that is an old persons disease is overlooked...

> > >

> > > Roy Snow,

> > > How are you doing on the MP?

> > >

> > > Thanks for any reply,

> > > a Carnes

> > >

> > >

> > >

> > > >

> > > > Jill (oxygenbabe) wrote " these people are absolutely blithely

> > > unmoved

> > > > by it. "

> > > > That is ridiculous Jill.

> >

>