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,

I wasn't looking to spark a debate or " argue " and I don't feel my response to

the list was arguing or bringing people down. I just felt Helen had her

opinion and Graydon his. And I am responded to you personally because I was

commenting on your email and felt that I didn't want to express my uneasiness

to the whole list as there probably would have been an email stating that we

" should take it outside " so to speak. I also didn't want to look like I was

showing off to the list and I didn't want to embarass you. Maybe I assumed

too much but I don't play games and I am saddened to think that you would

have that perception. There will be disagreements and yes it will make some

people uncomfortable. And if you consider it arguing then so be it -- but

the topic did deal with derogatory term being used and someone feeling

offended etc. And I have received several email responses (personally

unfortunately) expressing their total agreement with my " opinion. " None of

them considered it arguing or whining, etc., and I will not send those

responses to the list like you did mine because they had a reason for

responding to me privately as to not spark debates or hurt anyone in the

process. But I was hurt by your latest reply and that is my problem to deal

with, then you asked me not to email you out of LISTSERV as a way to " spank "

me in public -- like I was trying to get away with something and play games

and you made assumptions on your part. I have nothing to hide I was using

discretion but I won't do that anymore with you and I will respond to the

list if I have a view on something you said. I do apologize for giving you

the impression that I was being covert and I can see how it did appear that

way. - Cyndi

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  • 1 month later...

HI..

Just got to read your bio...I have written to your mom a couple of

times....when I have the time to even be on here....Just read your e-mail

today...always catching up...In fact I just read her post about you aching so

much and wrote her back...

I hope they help you where you are going now...I know your mom has been very

worried about you...and I know how she feels....I am the mom here too....It

is my son who has AIH,PSC,RA and Crohns....he is now 18...just last week...he

is my baby...but don't tell him I said that....I also have a 25 yr old

daughter...and a 22 yr old son who has had UC since he was 3....Strange how

both our boys have all the problems and the girls just slipped thru....

Well I am glad that you have decided to join us....

Luanne Ty's mom

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Hi Cyndi...

How are you doing....just wanted to drop you a line before the weekend takes

over....

Is Colorado done with the leaves....My cousin was there a couple of weeks ago

to visit her daughter and sent us pictures...They were beautiful...

My other son,, marches with a Drum and Bugle Corp from NJ and they

travel all over the country all summer....They were at Mile High Stadium 2

years ago and they were given a day to site see...He said it is absolutely

beautiful...Love it there....My daughter lives in Chicago and when is

not traveling all summer he is now in Conn and will be going to Boston for

the winter to preform with another group there....Busy guy...

Sorry to hear that you son suffers so much..How old is he and do you have

other children...

Hope you have a lovely weekend...

Luanne Ty's mom

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Luanne,

Pain is much better and not taking the pain meds. Still have the weird pain in

my ribs and chest but not as bad.

Colorado was beautiful yesterday. Had to go to Steamboat Springs for work and

it

was beautiful. Rain and snow moved in today so gray and cold. Colorado is one

of those states that is great winter or summer. Our mountains are awesome. I

do

have 2 other children, a daughter who is 12 and and my youngest son is 10.

Hope Ty is doing good today.

Cyndi (Colorado)

BBNLU@... wrote:

> Hi Cyndi...

> How are you doing....just wanted to drop you a line before the weekend takes

> over....

> Is Colorado done with the leaves....My cousin was there a couple of weeks ago

> to visit her daughter and sent us pictures...They were beautiful...

> My other son,, marches with a Drum and Bugle Corp from NJ and they

> travel all over the country all summer....They were at Mile High Stadium 2

> years ago and they were given a day to site see...He said it is absolutely

> beautiful...Love it there....My daughter lives in Chicago and when is

> not traveling all summer he is now in Conn and will be going to Boston for

> the winter to preform with another group there....Busy guy...

> Sorry to hear that you son suffers so much..How old is he and do you have

> other children...

> Hope you have a lovely weekend...

> Luanne Ty's mom

>

>

>

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Hi glad you are feeling better....It is a beautiful time of year....although

I like all the seasons...I lived in Florida for just one year when I was a

kid and really missed the seasons that we had when we had lived in NJ...The

family was lonely for the rest of our relatives so we moved back to

Jersey....Hanging Christmas lights in palm trees was just too weird...

It is so funny...I had gotten an e-mail from your mom telling me the age of

your oldest son....and I had just written her back....

Will be talking to both of you soon I am sure...

Luanne Ty's mom

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  • 5 years later...
Guest guest

Cyndi,

Thanks! I received my DVD today and watched it today. I really enjoyed it you and Adam did a great job. I have one question for you-I am up to 4.5 mg, I don't feel I have as good bladder control as I did on lower doses. I am not saying it was good at all pre-LDN but I feel it might have been better when I was taking 1.5, 2, or 3 mg. Is that my imagination or is that possible?

I know that dreaming says the med is working and I will occasionally do that -say once a week-not much.

I would appreciate your answer.

Thanks again for the DVD,

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no its possible. but you should talk to skip.how long were you on the three for?On Jul 24, 2006, at 10:57 PM, and Iselborn wrote:     Cyndi,   Thanks!  I received my DVD today and watched it today.  I really enjoyed it you and Adam did a great job.  I have one question for you-I am up to 4.5 mg, I don't feel I have as good bladder control as I did on lower doses.  I am not saying it was good at all pre-LDN  but I feel it might have been better when I was taking 1.5, 2, or 3 mg.  Is that my imagination or is that possible?   I know that dreaming says the med is working and I will occasionally do that -say once  a week-not much.   I would appreciate your answer.   Thanks again for the DVD,

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You guys can order the DVD here http://store.skipspharmacy.com

scroll down you'll see the DVD. we had few blips but they are fixed

now. if you have any problems let me know. We are going to work on a

PAL and also a Video format for those who do not have a dvd player.

cyndi

On Jul 25, 2006, at 12:23 AM, Pam wrote:

> Dear Cyndi,

> Thanks for the info on compounding pharmacies.

>

> I am still looking for your reply regarding ordering dvd.

>

> Thank you

> Sent via BlackBerry from Cingular Wireless

>

> [low dose naltrexone] Cyndi

>

>

>

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Cyndi-

I know your going to yell at me becuse I wasn't patient. I did a speedy trial of everything. About 1week on 1.0, and then 1 week on 2.0 then 1 week on 3.0 then up to 4.5. I didn't get the wonderful gravy I was hoping for and I could handle pushing it so I did.

Now about the bathroom stuff. What do you think?

-- Re: [low dose naltrexone] Cyndi

no its possible. but you should talk to skip. how long were you on the three for?

On Jul 24, 2006, at 10:57 PM, and Iselborn wrote:

Cyndi,

Thanks! I received my DVD today and watched it today. I really enjoyed it you and Adam did a great job. I have one question for you-I am up to 4.5 mg, I don't feel I have as good bladder control as I did on lower doses. I am not saying it was good at all pre-LDN but I feel it might have been better when I was taking 1.5, 2, or 3 mg. Is that my imagination or is that possible?

I know that dreaming says the med is working and I will occasionally do that -say once a week-not much.

I would appreciate your answer.

Thanks again for the DVD,

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Guest guest

Cyndi,

Will the PAL version also be region 0? The NTSC region 0 format should

be OK in my DVD player but if you're making a PAL version too (we use

PAL in Australia) then I'll wait for that if it is also region 0

(Australian uses region 4 encoding but region 0 will also work fine).

Thanks,

Cyndi Lenz wrote:

>You guys can order the DVD here http://store.skipspharmacy.com

>scroll down you'll see the DVD. we had few blips but they are fixed

>now. if you have any problems let me know. We are going to work on a

>PAL and also a Video format for those who do not have a dvd player.

>cyndi

>

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yes. what we have right now is NTSC region o right now and I also put an order

in for some video tapes for those who do not have dvd players.

Today i went to visit some of my local docs that I know and dropped them off a

copy and told them to watch it. they were very funny.

they wanted to know if it was a request or an order.

order of course

cyndi

Re: [low dose naltrexone] Cyndi

>

>Cyndi,

>

>Will the PAL version also be region 0? The NTSC region 0 format should

>be OK in my DVD player but if you're making a PAL version too (we use

>PAL in Australia) then I'll wait for that if it is also region 0

>(Australian uses region 4 encoding but region 0 will also work fine).

>

>Thanks,

>

>

>Cyndi Lenz wrote:

>

>>You guys can order the DVD here http://store.skipspharmacy.com

>>scroll down you'll see the DVD. we had few blips but they are fixed

>>now. if you have any problems let me know. We are going to work on a

>>PAL and also a Video format for those who do not have a dvd player.

>>cyndi

>>

>

>

>

>

>

>

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hey, just curious...did you give one to Dr Steingo? :)

he's my doc...

Lynn

Re: [low dose naltrexone] Cyndi>>Cyndi,>>Will the PAL version also be region 0? The NTSC region 0 format should >be OK in my DVD player but if you're making a PAL version too (we use >PAL in Australia) then I'll wait for that if it is also region 0 >(Australian uses region 4 encoding but region 0 will also work fine).>>Thanks,>>>Cyndi Lenz wrote:>>>You guys can order the DVD here http://store.skipspharmacy.com >>scroll down you'll see the DVD. we had few blips but they are fixed >>now. if you have any problems let me know. We are going to work on a >>PAL and also a Video format for those who do not have a dvd player.>>cyndi>>>>>>> >

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not yet. next week. today i gave it to people that I knew were very open and would watch because I asked them to and let them make their own conclusions. thats the point of the whole thing.  I'm telling anyone to do anything but consider what these guys are saying and in the long run I don't think its that much to ask.cyndiOn Jul 26, 2006, at 4:46 PM, Lynn Shaw wrote: hey, just curious...did you give one to Dr Steingo? :)  he's my doc...  Lynn   Re: [low dose naltrexone] Cyndi>>Cyndi,>>Will the PAL version also be region 0? The NTSC region 0 format should >be OK in my DVD player but if you're making a PAL version too (we use >PAL in Australia) then I'll wait for that if it is also region 0 >(Australian uses region 4 encoding but region 0 will also work fine).>>Thanks,>>>Cyndi Lenz wrote:>>>You guys can order the DVD here http://store.skipspharmacy.com >>scroll down you'll see the DVD. we had few blips but they are fixed >>now. if you have any problems let me know. We are going to work on a >>PAL and also a Video format for those who do not have a dvd player.>>cyndi>>>>>>> >

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Cyndi, please do NOT take this the wrong way!

Can these dvd's be copied, or are they copyrighted? The reason I ask is because this would obviously determine how many copies to buy. If they can be copied, it seems to me that they could be distributed at a much quicker rate, since the idea is obviously to get the word out about LDN. If the DVD's are copyrighted, then I completely understand!> > >> > >>You guys can order the DVD here http://store.skipspharmacy.com> > >>scroll down you'll see the DVD. we had few blips but they are fixed> > >>now. if you have any problems let me know. We are going to work on a> > >>PAL and also a Video format for those who do not have a dvd player.> > >>cyndi> > >>> > >> > >> > >> > >> > >> > >

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the dvd will be copywritten.  the paper work has gone in. Just so you understand what this means. It means if someone wants to make copies they need to ask permission. why. because its very easy for someone to take someones footage and re-edit it. so i need to know who is doing it and for what.All the people on who let me interview deserve to have what they said protected. and thats why.cyndiOn Jul 26, 2006, at 5:48 PM, bambi_ban_me wrote:Cyndi, please do NOT take this the wrong way!Can these dvd's be copied, or are they copyrighted? The reason I ask is because this would obviously determine how many copies to buy. If they can be copied, it seems to me that they could be distributed at a much quicker rate, since the idea is obviously to get the word out about LDN. If the DVD's are copyrighted, then I completely understand!> > > hey, just curious...did you give one to Dr Steingo? :)> > he's my doc...> > Lynn>

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Thx and understood Cyndi, kinda what I thought. If I bought a copy, is there any chance that I COULD burn a few copies to distribute?>> the dvd will be copywritten. the paper work has gone in. Just so you > understand what this means. It means if someone wants to make copies > they need to ask permission. why. because its very easy for someone > to take someones footage and re-edit it.> so i need to know who is doing it and for what.> All the people on who let me interview deserve to have what they said > protected. and thats why.> cyndi>

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  • 5 weeks later...

Cyndi,

How's your mom? Things getting better there?

-- [low dose naltrexone] Re: Physicians who prescibes LDN in New Orleans?>>Sorry Jakes, I'm in AZ, and I dont have a list.> "anyone know of a doc who will prescribe LDN in>> new orleans area?">>>> Sorry, Jake, I have no doctors on my list from New Orleans. Can>> anyone else here help Jakes?>>>> -- Maureen>> (Gazorpa)>>>

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thanks for asking. she is much better and even though i'm really sad to say

goodbye to her today she is on the mend. i'm at a hotel by the airport in

denver and i'll be heading home to florida tomorrow at 7.

cyndi

[low dose naltrexone] Re: Physicians who prescibes LDN in New

>Orleans?

>

>>

>

>>Sorry Jakes, I'm in AZ, and I dont have a list.

>

>> " anyone know of a doc who will prescribe LDN in

>

>>> new orleans area? "

>

>>>

>

>>> Sorry, Jake, I have no doctors on my list from New Orleans. Can

>

>>> anyone else here help Jakes?

>

>>>

>

>>> -- Maureen

>

>>> (Gazorpa)

>

>>>

>

>>

>

>

>

>

>

>

>

>

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thanks for asking. she is much better and even though i'm really sad to say

goodbye to her today she is on the mend. i'm at a hotel by the airport in

denver and i'll be heading home to florida tomorrow at 7.

cyndi

[low dose naltrexone] Re: Physicians who prescibes LDN in New

>Orleans?

>

>>

>

>>Sorry Jakes, I'm in AZ, and I dont have a list.

>

>> " anyone know of a doc who will prescribe LDN in

>

>>> new orleans area? "

>

>>>

>

>>> Sorry, Jake, I have no doctors on my list from New Orleans. Can

>

>>> anyone else here help Jakes?

>

>>>

>

>>> -- Maureen

>

>>> (Gazorpa)

>

>>>

>

>>

>

>

>

>

>

>

>

>

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  • 1 month later...

Cyndi,

Yes I did, for about a month. No luck there either. Keep thinkin'.

-- [low dose naltrexone] Re: 3 mg LDN for 6 days, Should I ask neuro for 4.5mg?Date: Thu, 28 Sep 2006 04:33:33 -0000>> >> > Rob:> >> > 1. Not everyone experiences symptom relief on LDN and most people> > don't experience instant relief. The primary reason to take it is>to> > prevent disease progression.> >> > 2. Do you have MS?> >> > 3. Were you experiencing spasticitcy of any sort--stiffness,>spasms?> > For people who do, Dr. Bihari recommends 3 mg rather than 4.5> >> > > > Dr. Bihari upped my dose to 4.5, after a year and a half at 3.0. He>said that he was putting all of his patients, with MS, on 4.5.>Thankfully, I've not had a problem. >>>>>>>>>>>>>>>>>>>

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  • 1 year later...

Have you tried only doing 1 room at a time for at

least 8 hours at a time???

L

--- " hunger.stryke " <cyndilees@...> wrote:

> L,

>

> I ordered a generator from ozoneapplications.com. I

> wanted to make

> sure I got enough flow so I ordered a 9000 mg/hr

> unit. The guy I

> spoke with told me I had 30 days to try it and if it

> did not work, I

> could return it for a refund.

>

> Have noticed a big reduction in activity but not

> 100%. I have been

> using it for 2 weeks.

>

> Cyndi

>

>

>

> >

> > Hi SOM,

> >

> > When we had the telephone conference with Dr

> Hildy--she mentioned

> getting an ozone

> > generator to kill the whatevers in our

> home/environment/car.

> >

> > I tried one, but I think the ozone output was too

> low. To kill

> black mold you need at least

> > 800 mg/hr and the air purifier one i tried only

> put out 360.

> >

> > Could you please ask Hildy what she thinks about

> an ozone generator?

> >

> > I am thinking about purchasing one with 3600mg/hr

> output...it is

> $400 and

> > nonrefundable...so I am hesitant yet desperate.

> >

> > How are you doing????

> >

> > Love L

> >

>

>

>

>

>

>

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  • 1 month later...
Guest guest

Hi Cyndi,

Are you doing any better?

I feel better and than have bad days...

I am trying to do everything that Golf did.

I was doing the epsom salt also--but it golf said he

thought it helped--so I am doing that also.

love LL

--- fritolay66 <fritolay66@...> wrote:

>

> >

> > Does anyone know if taking these 2 at the sametime

> is ok or is it

> > counter productive?

> > I have been taking the Albenzadol for almost a

> month and still having

> > symptoms. I have been taking iver on and off for

> 8 months and this

> > last month 1/wk.

> > Any input would be greatly appreciated.

> > Thanks,

> > Cyndi

> >

>

>

> Cyndi, I don't know if it's considered

> counter-productive, but I have

> been taking albendazole daily also for about a month

> with Iver at 7 day

> intervals. My activity and reactions amplified at

> first and now seem

> to be improving? It seems like every symptom I have

> ever had up to a

> point is what I seem to be experiencing in reverse.

> Currently I have a

> rash on the whole of my upper torso. With the

> combination of topicals,

> cleanses, diet change, and supplements, their hiding

> places are showing

> up. I can't believe my skin didn't show this at

> all, its no wonder I

> couldn't seem to get better. What are you

> experiencing with your

> combo? Anything similar? Do you feel like you get

> worse and then

> better?

>

>

> ------------------------------------

>

>

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Guest guest

Hi LL,

I am the same, feel better, then have bad days. This last round

lasted 4 weeks.

I am also doing everything Golf did. I would go see his Doc if he

would post the info.

Cyndi

> > >

> > > Does anyone know if taking these 2 at the sametime

> > is ok or is it

> > > counter productive?

> > > I have been taking the Albenzadol for almost a

> > month and still having

> > > symptoms. I have been taking iver on and off for

> > 8 months and this

> > > last month 1/wk.

> > > Any input would be greatly appreciated.

> > > Thanks,

> > > Cyndi

> > >

> >

> >

> > Cyndi, I don't know if it's considered

> > counter-productive, but I have

> > been taking albendazole daily also for about a month

> > with Iver at 7 day

> > intervals. My activity and reactions amplified at

> > first and now seem

> > to be improving? It seems like every symptom I have

> > ever had up to a

> > point is what I seem to be experiencing in reverse.

> > Currently I have a

> > rash on the whole of my upper torso. With the

> > combination of topicals,

> > cleanses, diet change, and supplements, their hiding

> > places are showing

> > up. I can't believe my skin didn't show this at

> > all, its no wonder I

> > couldn't seem to get better. What are you

> > experiencing with your

> > combo? Anything similar? Do you feel like you get

> > worse and then

> > better?

> >

> >

> > ------------------------------------

> >

> >

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