Donna

[Guest guest]

Hi Kim et al: I remember Ocean City. I spent the summer of my 16th year

there and lived on the beach most mornings and during the day worked in a

dress shop. I loved the sea breeze and those early mornings...there was a

bakery nearby and the sweet sea air blended with the wonderful things that

were baking.

I guess it is these memories that have to see us through the darker days.

Sad to think a tiny tick could create such a maelstrom (sp?).

The West coast surely has its beauty but it is difficult to access at least

it is now...maybe the New Jersey coast is the same.

Donna

[Guest guest]

I also spent my childhood years at the N.J. shore. I have great memories of Ocean City, Brigantine, ect. I lived in a town named Mays Landing, It is only 1/2 an hour from Ocean City. I sure miss living there, but I still have family there, so I visit. I live in N.Y. now. As a matter of fact, I'm not sure if I got Lymes here or in N.J. when I was visiting. Both are epidemic areas! Take care, KIm S in N.Y.

alopeztcr@... wrote:

Hi Fran: I spent my childhood at the NJ seashore. I lived in HIghland Park and also Middletown. After I left my nursing training at MGH in Boston, I came to work with the Navajoes in Gallup, New Mexico. Then on to So. California where I vowed only to visit and ended up staying all these many decades. I had so many wonderful memories going to the shore, including Brigantine and points south. I wonder what it looks like now?I also have had problems with my liver and pancreas from this lyme thing. My gallbladder was removed some months ago and I still have pain in those areas (liver, pancreas...I had severe pancreatitis...not too much fun).Wishing you all the healing rays from above.DonnaMany thanks to our founder and friend, Marta McCoy, for making the support group it is today.Easy Reference:Send a blank email message to: -Subscribeegroups - Subscribe to the list through email -Unsubscribeegroups - Unsubscribe from the list -Digestegroups - Switch your subscription to a digest format -Normalegroups - Switch your subscription to normalPlease send messages not related to Lyme disease to -OfftopicegroupsArchives can be accessed at lyme-aidPlease visit the sister site athttp://clubs./clubs/lymeaidThis is the primary chat site for .HAVE A GREAT DAY,kimsak2000@...

[Guest guest]

Yes I think it is and so is Long Island, where I live now! TO MANY VISITORS! But I guess thats what I am now, when I go there. Take care, Kim in N.Y. alopeztcr@... wrote:

Hi Kim et al: I remember Ocean City. I spent the summer of my 16th year there and lived on the beach most mornings and during the day worked in a dress shop. I loved the sea breeze and those early mornings...there was a bakery nearby and the sweet sea air blended with the wonderful things that were baking.I guess it is these memories that have to see us through the darker days. Sad to think a tiny tick could create such a maelstrom (sp?).The West coast surely has its beauty but it is difficult to access at least it is now...maybe the New Jersey coast is the same.DonnaMany thanks to our founder and friend, Marta McCoy, for making the support group it is today.Easy Reference:Send a blank email message to: -Subscribeegroups - Subscribe to the list through email -Unsubscribeegroups - Unsubscribe from the list -Digestegroups - Switch your subscription to a digest format -Normalegroups - Switch your subscription to normalPlease send messages not related to Lyme disease to -OfftopicegroupsArchives can be accessed at lyme-aidPlease visit the sister site athttp://clubs./clubs/lymeaidThis is the primary chat site for .HAVE A GREAT DAY,kimsak2000@...

[Guest guest]

Hello Donna,

Yes, you do have an aggressive one, but the poorly differentiated

cancers are often easier to treat. Perhaps you could send details to me

<vgammill@...>. With such a high Ki-67 you could assume it that

it is probably PR neg. Sorry that I couldn't address this earlier; it has

been a busy week.

At 04:35 AM 04/06/05, you wrote:

>, If I may, would respectfully ask your input on my pathology report.

>It was a mixed intraductal (comedo) and infiltrating duct adenocarcinoma.

>Estrogen receptor negative,

>progersterone receptor negative,

>Her-2 positive,

>Ki-67 index positive with 70% of tumor cells showing 3+ nuclear staining.

>The liver bx showed metastatic, poorly differentiated adenocarcinoma

>consistent with breast primary. Thank you so very much. Donna

>

>

>

[Guest guest]

It sounds to me, and my heart goes out to anyone unhappy, that members of

this group should start a support group that will eventually have others

find them and draw solace from each other.

The healing process begins by opening your heart, as you are doing, and

sharing. This you are doing too.

How to start a support group with its own site? Beats me, but I am sure

that one of you can figure out how. Then you can place a link on this site

and before you know it there will be more happiness to spread around.

Good luck,

Joe C.

[Guest guest]

Donna,

Which neuro are you speaking of in ville. I know of one that heads up a MS clinic here in ville. The doctor I work for called him and he said no neuros are using LDN. So I am just curious to know which MS clinic.

-- [low dose naltrexone] Re: 12 Days on LDN

Pete! I am so happy for you! Yippee! I want to know, if it is okay, if I send this email to a nurse I know who works for a neurologists that would not prescribe LDN and if I could send it to the doctor who is the head of the MS Clinic in ville, Florida. I want him to see your story and see what his peers are thinking. May I use this on my website? You told it so well and I am so excited for you! Lets jump up and down! haha! Peace and Health Always To You Pete! Donna www.freewebs.com/lovelaugh/ >> thats fantastic Pete, looks like you did everything right. I hope you continue to improve.> [low dose naltrexone] 12 Days on LDN> > > I've been on 3mg of LDN for 12 days now. I found an LDN friendly > doc, through this site, who does (and did in my case) phone > consults. I got my prescription filled through Skip's, so I know it > was compounded properly. The main thing I am after, of course, is to > halt progression of my MS. I have only recently been diagnosed with > MS, a little over 2 months ago. It was very hard to diagnose. The > MRIs, even with contrast, were not definitive. It's only on the > cervical that any demyelimation shows up and with no intensification > with the contrast. My brain scan shows some white specs, but more > the type that's consistent with the aging process, as I am 59. It > wasn't till I got the LP that a diagnosis of MS was given. I'm one > of the lucky one's; the only symptoms I have is drop foot (Right > foot), spasticity in the legs, mainly right leg a little in the left, > but not enough to cause any impairment and paresthesia (pins and > needles) in both feet. I do have some difficulty with gait, due to > my right leg, and have a pronounced limp, but that's it. I'm not > bothered my the heat or getting overheated; I don't have the "Hugs"; > no problems with my eyesight, no cognitive impairment, nothing else > at all just my right leg and that's it. This is why it was so > important to me to halt progression; if I could just stop its > progression I could live out my life just fine. May be my skiing and > dancing days were over, but I wouldn't be limited by anything else. > However, I am happy to report that the paresthesia in my right foot > is gone totally and it's been reduced in my left foot by 80 or 90 > percent. Also my gait has improved. I can lift my foot in and out > the car much easier than I could and climbing stairs has gotten > easier. Hopefully I will continue to improve.> > I had an appointment with my neuro this past Monday. I asked him if > her were familiar with LDN. He smiled and said he was. When I asked > him why he was smiling he told me that he had been at a conference > recently and had just asked a couple of the leading MS neuros in our > area (Philadelphia) their opinion about LDN. One of them being Dr. > Leist, who is the director of the MS clinic at the Jefferson > University Hospital. They did not dismiss LDN out of hand. Although > they weren't prescribing it, they are taking a wait and see attitude, > with all the turn arounds that have occurred lately. My own neuro > has an even more open attitude. He told me a story that helps > explain his open attitude. When he was in Med School there was a > doctor, just a GP, in Australia who came up with the theory that > Peptic Ulcers were not cause by over acidity, as what was the > conventional wisdom of the day, but by bacteria from evidence > gathered during autopsies that he had preformed. He was dismissed > out of hand; after all, the experts in the field said he was wrong > and who was he as a mere GP to refute their beliefs. 10 years later > he was proven to be 100% correct. Doctors now know that it is caused > by the corkscrew-shaped bacterium Helicobacter pylori (H. pylori). > He said this was a very valuable lesson learned early in his medical > career; never discount anything just because it may go against > current conventional wisdom. Today's wild theory may be tomorrow's > conventional wisdom. I asked him if he'd be willing to write a > prescription for me. He said he might, but wants to do a little more > research first. The next day I dropped off the following documents > at his office:> > 1. An email that references the grant that the National Multiple > Sclerosis Society (NMSS) funded to Dr. Ian Zagon to research LDN.> 2. The webpage from the NMSS site that shows the reversal of > opinion where they now encourage clinical trials be conducted on LDN.> 3. The Article written by Y.P. Agrawal, MD, PhD, (Med > Hypotheses. 2005;64(4):721-4), where Dr. Agrawal proposes that LDN > reduces disease activity in MS by reducing the destruction of > oligodendrocytes, the cells that manufacture myelin.> 4. Frequently Asked Questions about LDN that I found on the net.> 5. Survey of 267 Patients Using Low Dose Naltrexone for Multiple > Sclerosis.> > Once he's digested these documents. I'll give him a call.> > Also today I had an appointment with my Primary care physician for my > routine check up. During the exam he asked me how I was doing and I > told him I was improving and asked him if he was familiar with > Naltrexone. He said he was, primarily as it relates to substance > abuse, but was aware that it was being used off label and why. I > told him I was taking it and started by spiel. He was very > interested. This time I had copies of what I had given my neuro with > me and he seemed extremely interested in reviewing them. I asked him > the magic question, "Would he be willing to write a prescription for > LDN for me" and he said he didn't see why not. I know I could have > pushed him and gotten it right there and then but thought best of > it. I'll let him read and digest the documents I left with him and > then call him in about a month. I figured by that time he'll become > even more comfortable with prescribing it having review the documents > I furnished him. It will give us one more LDN friendly doctor in our > corner (In Bucks County, PA). By the way he's a D.O. not an M.D. > D.O.'s seem to be more receptive to alternate treatments.> > I sorry I've rattled on, but I'm just so excited I couldn't contain > myself.> > Pete>

[Guest guest]

Donna,

Are you referring to Silliman, MD. I used to see him. He is the one I referred about in my e-mail to you last night.

-- [low dose naltrexone] Re: 12 Days on LDN

, He said he was the head of the MS Clinic in ville...I think it is related to Shands Teaching Hospital in Gainesville. I don't know. It is 580 West 8th St., Plaza 1, 9th Floor, ville....what does that mean? You live in ville, Florida? Take care, God Bless, Donna www.freewebs.com/lovelaugh/ > > >> > > thats fantastic Pete, looks like you did everything right. I > hope > > you continue to improve.> > > [low dose naltrexone] 12 Days on LDN> > > > > > > > > I've been on 3mg of LDN for 12 days now. I found an LDN > friendly > > > doc, through this site, who does (and did in my case) phone > > > consults. I got my prescription filled through Skip's, so I > know > > it > > > was compounded properly. The main thing I am after, of course, > is > > to > > > halt progression of my MS. I have only recently been diagnosed > > with > > > MS, a little over 2 months ago. It was very hard to diagnose. > The > > > MRIs, even with contrast, were not definitive. It's only on > the > > > cervical that any demyelimation shows up and with no > > intensification > > > with the contrast. My brain scan shows some white specs, but > more > > > the type that's consistent with the aging process, as I am 59. > It > > > wasn't till I got the LP that a diagnosis of MS was given. I'm > > one > > > of the lucky one's; the only symptoms I have is drop foot > (Right > > > foot), spasticity in the legs, mainly right leg a little in > the > > left, > > > but not enough to cause any impairment and paresthesia (pins > and > > > needles) in both feet. I do have some difficulty with gait, > due > > to > > > my right leg, and have a pronounced limp, but that's it. I'm > not > > > bothered my the heat or getting overheated; I don't have > > the "Hugs"; > > > no problems with my eyesight, no cognitive impairment, nothing > > else > > > at all just my right leg and that's it. This is why it was so > > > important to me to halt progression; if I could just stop its > > > progression I could live out my life just fine. May be my > skiing > > and > > > dancing days were over, but I wouldn't be limited by anything > > else. > > > However, I am happy to report that the paresthesia in my right > > foot > > > is gone totally and it's been reduced in my left foot by 80 or > 90 > > > percent. Also my gait has improved. I can lift my foot in and > out > > > the car much easier than I could and climbing stairs has > gotten > > > easier. Hopefully I will continue to improve.> > > > > > I had an appointment with my neuro this past Monday. I asked > him > > if > > > her were familiar with LDN. He smiled and said he was. When I > > asked > > > him why he was smiling he told me that he had been at a > > conference > > > recently and had just asked a couple of the leading MS neuros > in > > our > > > area (Philadelphia) their opinion about LDN. One of them being > > Dr. > > > Leist, who is the director of the MS clinic at the > > Jefferson > > > University Hospital. They did not dismiss LDN out of hand. > > Although > > > they weren't prescribing it, they are taking a wait and see > > attitude, > > > with all the turn arounds that have occurred lately. My own > neuro > > > has an even more open attitude. He told me a story that helps > > > explain his open attitude. When he was in Med School there was > a > > > doctor, just a GP, in Australia who came up with the theory > that > > > Peptic Ulcers were not cause by over acidity, as what was the > > > conventional wisdom of the day, but by bacteria from evidence > > > gathered during autopsies that he had preformed. He was > dismissed > > > out of hand; after all, the experts in the field said he was > > wrong > > > and who was he as a mere GP to refute their beliefs. 10 years > > later > > > he was proven to be 100% correct. Doctors now know that it is > > caused > > > by the corkscrew-shaped bacterium Helicobacter pylori (H. > > pylori). > > > He said this was a very valuable lesson learned early in his > > medical > > > career; never discount anything just because it may go against > > > current conventional wisdom. Today's wild theory may be > > tomorrow's > > > conventional wisdom. I asked him if he'd be willing to write a > > > prescription for me. He said he might, but wants to do a > little > > more > > > research first. The next day I dropped off the following > > documents > > > at his office:> > > > > > 1. An email that references the grant that the National > Multiple > > > Sclerosis Society (NMSS) funded to Dr. Ian Zagon to research > LDN.> > > 2. The webpage from the NMSS site that shows the reversal of > > > opinion where they now encourage clinical trials be conducted > on > > LDN.> > > 3. The Article written by Y.P. Agrawal, MD, PhD, (Med > > > Hypotheses. 2005;64(4):721-4), where Dr. Agrawal proposes that > > LDN > > > reduces disease activity in MS by reducing the destruction of > > > oligodendrocytes, the cells that manufacture myelin.> > > 4. Frequently Asked Questions about LDN that I found on the > net.> > > 5. Survey of 267 Patients Using Low Dose Naltrexone for > Multiple > > > Sclerosis.> > > > > > Once he's digested these documents. I'll give him a call.> > > > > > Also today I had an appointment with my Primary care physician > > for my > > > routine check up. During the exam he asked me how I was doing > and > > I > > > told him I was improving and asked him if he was familiar with > > > Naltrexone. He said he was, primarily as it relates to > substance > > > abuse, but was aware that it was being used off label and why. > I > > > told him I was taking it and started by spiel. He was very > > > interested. This time I had copies of what I had given my > neuro > > with > > > me and he seemed extremely interested in reviewing them. I > asked > > him > > > the magic question, "Would he be willing to write a > prescription > > for > > > LDN for me" and he said he didn't see why not. I know I could > > have > > > pushed him and gotten it right there and then but thought best > of > > > it. I'll let him read and digest the documents I left with him > > and > > > then call him in about a month. I figured by that time he'll > > become > > > even more comfortable with prescribing it having review the > > documents > > > I furnished him. It will give us one more LDN friendly doctor > in > > our > > > corner (In Bucks County, PA). By the way he's a D.O. not an > M.D. > > > D.O.'s seem to be more receptive to alternate treatments.> > > > > > I sorry I've rattled on, but I'm just so excited I couldn't > > contain > > > myself.> > > > > > Pete> > >> >>

[Guest guest]

No this is a Dr. Kantor...he is in ville.....He said he

was the head of the MS clinic and his email address has ufl.edu on

the end so I am figuring he is related to Shands Teaching Hospital in

Gainesville. There is a Shands in ville also. U of F is in

Gainesville. I know of Silliman. I don't believe he is LDN

friendly is he? I started to go to him...but found a doctor I knew

would give me LDN. Well a better chance anyway. Does Silliman

prescribe your LDN?

thanks, Peace and Good Health, Donna

www.freewebs.com/lovelaugh/

> > > >

> > > > thats fantastic Pete, looks like you did everything right. I

> > hope

> > > you continue to improve.

> > > > [low dose naltrexone] 12 Days on LDN

> > > >

> > > >

> > > > I've been on 3mg of LDN for 12 days now. I found an LDN

> > friendly

> > > > doc, through this site, who does (and did in my case) phone

> > > > consults. I got my prescription filled through Skip's, so I

> > know

> > > it

> > > > was compounded properly. The main thing I am after, of

> course,

> > is

> > > to

> > > > halt progression of my MS. I have only recently been

> diagnosed

> > > with

> > > > MS, a little over 2 months ago. It was very hard to diagnose.

> > The

> > > > MRIs, even with contrast, were not definitive. It's only on

> > the

> > > > cervical that any demyelimation shows up and with no

> > > intensification

> > > > with the contrast. My brain scan shows some white specs, but

> > more

> > > > the type that's consistent with the aging process, as I am

> 59.

> > It

> > > > wasn't till I got the LP that a diagnosis of MS was given.

> I'm

> > > one

> > > > of the lucky one's; the only symptoms I have is drop foot

> > (Right

> > > > foot), spasticity in the legs, mainly right leg a little in

> > the

> > > left,

> > > > but not enough to cause any impairment and paresthesia (pins

> > and

> > > > needles) in both feet. I do have some difficulty with gait,

> > due

> > > to

> > > > my right leg, and have a pronounced limp, but that's it. I'm

> > not

> > > > bothered my the heat or getting overheated; I don't have

> > > the " Hugs " ;

> > > > no problems with my eyesight, no cognitive impairment,

> nothing

> > > else

> > > > at all just my right leg and that's it. This is why it was so

> > > > important to me to halt progression; if I could just stop its

> > > > progression I could live out my life just fine. May be my

> > skiing

> > > and

> > > > dancing days were over, but I wouldn't be limited by anything

> > > else.

> > > > However, I am happy to report that the paresthesia in my

> right

> > > foot

> > > > is gone totally and it's been reduced in my left foot by 80

> or

> > 90

> > > > percent. Also my gait has improved. I can lift my foot in and

> > out

> > > > the car much easier than I could and climbing stairs has

> > gotten

> > > > easier. Hopefully I will continue to improve.

> > > >

> > > > I had an appointment with my neuro this past Monday. I asked

> > him

> > > if

> > > > her were familiar with LDN. He smiled and said he was. When I

> > > asked

> > > > him why he was smiling he told me that he had been at a

> > > conference

> > > > recently and had just asked a couple of the leading MS neuros

> > in

> > > our

> > > > area (Philadelphia) their opinion about LDN. One of them

> being

> > > Dr.

> > > > Leist, who is the director of the MS clinic at the

> > > Jefferson

> > > > University Hospital. They did not dismiss LDN out of hand.

> > > Although

> > > > they weren't prescribing it, they are taking a wait and see

> > > attitude,

> > > > with all the turn arounds that have occurred lately. My own

> > neuro

> > > > has an even more open attitude. He told me a story that helps

> > > > explain his open attitude. When he was in Med School there

> was

> > a

> > > > doctor, just a GP, in Australia who came up with the theory

> > that

> > > > Peptic Ulcers were not cause by over acidity, as what was the

> > > > conventional wisdom of the day, but by bacteria from evidence

> > > > gathered during autopsies that he had preformed. He was

> > dismissed

> > > > out of hand; after all, the experts in the field said he was

> > > wrong

> > > > and who was he as a mere GP to refute their beliefs. 10 years

> > > later

> > > > he was proven to be 100% correct. Doctors now know that it is

> > > caused

> > > > by the corkscrew-shaped bacterium Helicobacter pylori (H.

> > > pylori).

> > > > He said this was a very valuable lesson learned early in his

> > > medical

> > > > career; never discount anything just because it may go

> against

> > > > current conventional wisdom. Today's wild theory may be

> > > tomorrow's

> > > > conventional wisdom. I asked him if he'd be willing to write

> a

> > > > prescription for me. He said he might, but wants to do a

> > little

> > > more

> > > > research first. The next day I dropped off the following

> > > documents

> > > > at his office:

> > > >

> > > > 1. An email that references the grant that the National

> > Multiple

> > > > Sclerosis Society (NMSS) funded to Dr. Ian Zagon to research

> > LDN.

> > > > 2. The webpage from the NMSS site that shows the reversal of

> > > > opinion where they now encourage clinical trials be conducted

> > on

> > > LDN.

> > > > 3. The Article written by Y.P. Agrawal, MD, PhD, (Med

> > > > Hypotheses. 2005;64(4):721-4), where Dr. Agrawal proposes

> that

> > > LDN

> > > > reduces disease activity in MS by reducing the destruction of

> > > > oligodendrocytes, the cells that manufacture myelin.

> > > > 4. Frequently Asked Questions about LDN that I found on the

> > net.

> > > > 5. Survey of 267 Patients Using Low Dose Naltrexone for

> > Multiple

> > > > Sclerosis.

> > > >

> > > > Once he's digested these documents. I'll give him a call.

> > > >

> > > > Also today I had an appointment with my Primary care

> physician

> > > for my

> > > > routine check up. During the exam he asked me how I was doing

> > and

> > > I

> > > > told him I was improving and asked him if he was familiar

> with

> > > > Naltrexone. He said he was, primarily as it relates to

> > substance

> > > > abuse, but was aware that it was being used off label and

> why.

> > I

> > > > told him I was taking it and started by spiel. He was very

> > > > interested. This time I had copies of what I had given my

> > neuro

> > > with

> > > > me and he seemed extremely interested in reviewing them. I

> > asked

> > > him

> > > > the magic question, " Would he be willing to write a

> > prescription

> > > for

> > > > LDN for me " and he said he didn't see why not. I know I could

> > > have

> > > > pushed him and gotten it right there and then but thought

> best

> > of

> > > > it. I'll let him read and digest the documents I left with

> him

> > > and

> > > > then call him in about a month. I figured by that time he'll

> > > become

> > > > even more comfortable with prescribing it having review the

> > > documents

> > > > I furnished him. It will give us one more LDN friendly doctor

> > in

> > > our

> > > > corner (In Bucks County, PA). By the way he's a D.O. not an

> > M.D.

> > > > D.O.'s seem to be more receptive to alternate treatments.

> > > >

> > > > I sorry I've rattled on, but I'm just so excited I couldn't

> > > contain

> > > > myself.

> > > >

> > > > Pete

> > > >

> > >

> >

>

[Guest guest]

Donna,I also never had anxiety attacks until getting implants,

Some panic attacks landed me in the emergency room

I was explanted this past August

I haven't had one attack since explant.

Dr Kolb said's that she can actually see the

heart calming down during capsule removal

God Bless,

Sandy~

[Guest guest]

Donna,I also never had anxiety attacks until getting implants,

Some panic attacks landed me in the emergency room

I was explanted this past August

I haven't had one attack since explant.

Dr Kolb said's that she can actually see the

heart calming down during capsule removal

God Bless,

Sandy~