Re: I want to try LDN but am afraid

[Guest guest]

>

> I have Lupus, Grave's, Hashi's, Sjogren's. Plenty of other things

as

> well. Doc put me on Plaquenil. Something happened. It felt like

> blood sugar so low I couldn't stay awake, dizziness, deafening

ringing

> in the ears, I forgot everything, including my own address. I could

> go on. A trip to the bathroom was all I could manage and it had me

> exhausted. No docs would return my calls, so I quit taking it.

That

> was Monday. I feel better. My Lupus symptoms are hitting me again

> now. Nurse says Plaquenil doesn't cause blood sugar issues so I

> looked it up. I think I need a new Rheumy.

>

> Anyway, Prednisone isn't going to be a long term solution for me,

and

> I can't live on the Plaquenil again. I tried it for 3 months. I

want

> to try LDN, but my neurologist looked at me like I was crazy. I am

> also afraid because I have been so sick there's not a lot left of me

> if things go worse.

>

> I need some advice. Not medical advice, I know, but nobody here

knows

> anything about this. Has anyone had an experience like mine? Does

> anyone know a doctor in Missouri or Iowa that is familiar with LDN?

> Is it too late for me to try this?

>

> E in Missouri

>

First off, I've had Crohn's for 8 years and i Definitly know what Low

blood sugar symptoms feel like. I just started LDN tonight so i will

experience it for the first time.

As far as being to late? Nothing is ever to late if you really try.

Some Patients have actually gotten out of wheel chairs because of LDN.

As far as as a doctor in your area.. Cant help ya there but i got my

LDN through a Phone Consultation. Was pretty cheap. Very impressed.

My Gastro wouldn't prescribe it.

[Guest guest]

I'm working on a Dr Berksons Video right now and he talks about the success he has with ldn and Lupis. it is compression right now and i hope to have it upload in a little while and will post the link in the morning so you can hear him talk about his successes.as soon as it is compressed i will upload it so you can seecyndiThe highest calling is to be a soul friend St Brigid On Nov 18, 2008, at 9:50 PM, antiquityhill wrote:I have Lupus, Grave's, Hashi's, Sjogren's. Plenty of other things aswell. Doc put me on Plaquenil. Something happened. It felt likeblood sugar so low I couldn't stay awake, dizziness, deafening ringingin the ears, I forgot everything, including my own address. I couldgo on. A trip to the bathroom was all I could manage and it had meexhausted. No docs would return my calls, so I quit taking it. Thatwas Monday. I feel better. My Lupus symptoms are hitting me againnow. Nurse says Plaquenil doesn't cause blood sugar issues so Ilooked it up. I think I need a new Rheumy.  Anyway, Prednisone isn't going to be a long term solution for me, andI can't live on the Plaquenil again. I tried it for 3 months. I wantto try LDN, but my neurologist looked at me like I was crazy. I amalso afraid because I have been so sick there's not a lot left of meif things go worse.I need some advice. Not medical advice, I know, but nobody here knowsanything about this. Has anyone had an experience like mine? Doesanyone know a doctor in Missouri or Iowa that is familiar with LDN? Is it too late for me to try this?E in Missouri

[Guest guest]

E in Missouri, I have lupus, obviously not as bad as you - but I do have a lot of other stuff going on. Since I took LDN there has been no sign of it....... Surely worth a shot?

Celia

[Guest guest]

E in Missouri

I recently told a patient (I work in a Podiatrist's office) who has MS and Sjorgen's about LDN. She has been on it several months now and she was in the office yesterday. She said so far she has found it has really helped her Sjorgen's symptoms the most.

Best wishes to you.

Re: [low dose naltrexone] I want to try LDN but am afraid

I'm working on a Dr Berksons Video right now and he talks about the success he has with ldn and Lupis. it is compression right now and i hope to have it upload in a little while and will post the link in the morning so you can hear him talk about his successes.

as soon as it is compressed i will upload it so you can see

cyndi

The highest calling is to be a soul friend St Brigid

On Nov 18, 2008, at 9:50 PM, antiquityhill wrote:

I have Lupus, Grave's, Hashi's, Sjogren's. Plenty of other things aswell. Doc put me on Plaquenil. Something happened. It felt likeblood sugar so low I couldn't stay awake, dizziness, deafening ringingin the ears, I forgot everything, including my own address. I couldgo on. A trip to the bathroom was all I could manage and it had meexhausted. No docs would return my calls, so I quit taking it. Thatwas Monday. I feel better. My Lupus symptoms are hitting me againnow. Nurse says Plaquenil doesn't cause blood sugar issues so Ilooked it up. I think I need a new Rheumy. Anyway, Prednisone isn't going to be a long term solution for me, andI can't live on the Plaquenil again. I tried it for 3 months. I wantto try LDN, but my neurologist looked at me like I was crazy. I amalso afraid because I have been so sick there's not a lot left of meif things go worse.I need some advice. Not medical advice, I know, but nobody here knowsanything about this. Has anyone had an experience like mine? Doesanyone know a doctor in Missouri or Iowa that is familiar with LDN? Is it too late for me to try this?E in Missouri

[Guest guest]

E in Missouri……I

have scleroderma, sjrogren’s and fibromyalgia. My son has MS …diagnosed

at 19…..through the grace of God and a good friend, we were led to LDN

very early in my son’s illness. We both researched it and spoke to

many people here on this site…..people now that I would consider good

friends…and I was convinced that it was going to help my son. I

listened to all the stories of who it helped….why would they tell me

their success if it was not true…..I believed every one of them, because

they had nothing to gain from it…and I know they made a pact with

themselves and God, that they would share the news and try to help someone else…Just

as I did. I thought of the people who have already died that I loved that

I felt might be alive if I had known about ldn, and could have told them…..

With that being said…I have been on ldn for just over

2 years…..my son also. I was immediately better…….but I

was at a low point, but I felt better than I had in a long long time…..whatever

little things, like a mild headache. I know it felt so good to sleep and

so good to be in bed, that I did not want to get up in the morning…..I

had so much less pain, and swelling……much much more energy…..Both

my son and I said that we felt like our bodies were working correctly for the

first time….and we felt like we had our life back. I don’t

think I could go on if I had to watch my son suffer with MS. Ldn has

given me peace of mind because I truly believe my son can live a normal life

now.

If it was up to me I would have everyone I know on ldn, to

keep them healthy……I would run and not stop at anything to get

ldn. Be patient and give it time to work….I have to say I felt so

good on 1.5 mg, I stayed on that for a long time…..Actually felt I was

getting a cold or flu a few times, and it felt like my body kicked in

immediately, and made me well before I truly got sick…..I would say that

I have very few problems now…..I am not perfect…..I don’t

think we can expect that, but I don’t feel like I have gotten any worse,

and my son most certainly has not….

Go for it….and don’t look back….

Conni

[Guest guest]

Conni,

How much ldn does your son take?

Thanks

Elena

From: Conni Lawrence <summerwind1@...>low dose naltrexone Sent: Wednesday, November 19, 2008 12:18:13 PMSubject: [low dose naltrexone] Re: I want to try LDN but am afraid

E in Missouri ……I have scleroderma, sjrogren’s and fibromyalgia. My son has MS …diagnosed at 19…..through the grace of God and a good friend, we were led to LDN very early in my son’s illness. We both researched it and spoke to many people here on this site…..people now that I would consider good friends…and I was convinced that it was going to help my son. I listened to all the stories of who it helped….why would they tell me their success if it was not true…..I believed every one of them, because they had nothing to gain from it…and I know they made a pact with themselves and God, that they would share the news and try to help someone else…Just as I did. I thought of the people who have already died that I loved that I felt might be alive if I had known about ldn, and could have told them…..

With that being said…I have been on ldn for just over 2 years…..my son also. I was immediately better…….but I was at a low point, but I felt better than I had in a long long time…..whatever little things, like a mild headache. I know it felt so good to sleep and so good to be in bed, that I did not want to get up in the morning…..I had so much less pain, and swelling……much much more energy…..Both my son and I said that we felt like our bodies were working correctly for the first time….and we felt like we had our life back. I don’t think I could go on if I had to watch my son suffer with MS. Ldn has given me peace of mind because I truly believe my son can live a normal life now.

If it was up to me I would have everyone I know on ldn, to keep them healthy……I would run and not stop at anything to get ldn. Be patient and give it time to work….I have to say I felt so good on 1.5 mg, I stayed on that for a long time…..Actually felt I was getting a cold or flu a few times, and it felt like my body kicked in immediately, and made me well before I truly got sick…..I would say that I have very few problems now…..I am not perfect…..I don’t think we can expect that, but I don’t feel like I have gotten any worse, and my son most certainly has not….

Go for it….and don’t look back….

Conni

[Guest guest]

>Hello Elena;

I just found this site yesterday. I have scleroderma, and my lungs

are now inflamed. I have just started chemo last week. Do you know

anyone on this site who also has sclerdoerma and tried LDN?? This

sounds too good to be true. I have been researching for 4 years onmy

illness, and hope this is my final destination!!

god bless

Marla:)

> Conni,

>

> How much ldn does your son take?

>

> Thanks

> Elena

>

>

>

>

> ________________________________

> From: Conni Lawrence <summerwind1@...>

> low dose naltrexone

> Sent: Wednesday, November 19, 2008 12:18:13 PM

> Subject: [low dose naltrexone] Re: I want to try LDN but am afraid

>

>

> E in Missouri ……I have scleroderma, sjrogren's and fibromyalgia. 

My son has MS …diagnosed at 19…..through the grace of God and a good

friend, we were led to LDN very early in my son's illness.  We both

researched it and spoke to many people here on this site…..people now

that I would consider good friends…and I was convinced that it was

going to help my son.  I listened to all the stories of who it

helped….why would they tell me their success if it was not true…...I

believed every one of them, because they had nothing to gain from it…

and I know they made a pact with themselves and God, that they would

share the news and try to help someone else…Just as I did.  I thought

of the people who have already died that I loved that I felt might be

alive if I had known about ldn, and could have told them…..

>  

> With that being said…I have been on ldn for just over 2 years…..my

son also.  I was immediately better…….but I was at a low point, but I

felt better than I had in a long long time…..whatever little things,

like a mild headache.  I know it felt so good to sleep and so good to

be in bed, that I did not want to get up in the morning…..I had so

much less pain, and swelling……much much more energy…..Both my son and

I said that we felt like our bodies were working correctly for the

first time….and we felt like we had our life back.  I don't think I

could go on if I had to watch my son suffer with MS.  Ldn has given

me peace of mind because I truly believe my son can live a normal

life now. 

>  

> If it was up to me I would have everyone I know on ldn, to keep

them healthy……I would run and not stop at anything to get ldn.  Be

patient and give it time to work….I have to say I felt so good on 1.5

mg, I stayed on that for a long time…..Actually felt I was getting a

cold or flu a few times, and it felt like my body kicked in

immediately, and made me well before I truly got sick…..I would say

that I have very few problems now…..I am not perfect…..I don't think

we can expect that, but I don't feel like I have gotten any worse,

and my son most certainly has not….  

>  

> Go for it….and don't look back….

>  

> Conni

>

[Guest guest]

> >Hello Elena;

> I just found this site yesterday. I have scleroderma, and my lungs

> are now inflamed. I have just started chemo last week. Do you know

> anyone on this site who also has sclerdoerma and tried LDN?? This

> sounds too good to be true. I have been researching for 4 years onmy

> illness, and hope this is my final destination!!

> god bless

> Marla:)

> Hello Connie;

I am so glad that you and your son are having such amazing results.Is

your scleroderma diffuse or limited? I think my rhematoid Dr. will kick

me out of his office when I see him next month with this info. he is

such a negative Dr.

Is there anyone else in the group that has scleroderma that can

write me their story? Any info would be DEEPLY APPRECIATED!!!

Happy Holiday!

Marla:)

>

>

>

> > Conni,

> >

> > How much ldn does your son take?

> >

> > Thanks

> > Elena

> >

> >

> >

> >

> > ________________________________

> > From: Conni Lawrence summerwind1@

> > low dose naltrexone

> > Sent: Wednesday, November 19, 2008 12:18:13 PM

> > Subject: [low dose naltrexone] Re: I want to try LDN but am afraid

> >

> >

> > E in Missouri ……I have scleroderma, sjrogren's and

fibromyalgia.

> My son has MS …diagnosed at 19…..through the grace of God and

a good

> friend, we were led to LDN very early in my son's illness. We both

> researched it and spoke to many people here on this site…..people

now

> that I would consider good friends…and I was convinced that it was

> going to help my son. I listened to all the stories of who it

> helped….why would they tell me their success if it was not

true…...I

> believed every one of them, because they had nothing to gain from

it…

> and I know they made a pact with themselves and God, that they would

> share the news and try to help someone else…Just as I did. I

thought

> of the people who have already died that I loved that I felt might be

> alive if I had known about ldn, and could have told them…..

> >

> > With that being said…I have been on ldn for just over 2

years…..my

> son also. I was immediately better…….but I was at a low point,

but I

> felt better than I had in a long long time…..whatever little

things,

> like a mild headache. I know it felt so good to sleep and so good to

> be in bed, that I did not want to get up in the morning…..I had so

> much less pain, and swelling……much much more energy…..Both my

son and

> I said that we felt like our bodies were working correctly for the

> first time….and we felt like we had our life back. I don't think

I

> could go on if I had to watch my son suffer with MS. Ldn has given

> me peace of mind because I truly believe my son can live a normal

> life now.

> >

> > If it was up to me I would have everyone I know on ldn, to keep

> them healthy……I would run and not stop at anything to get ldn.

Be

> patient and give it time to work….I have to say I felt so good on

1.5

> mg, I stayed on that for a long time…..Actually felt I was getting

a

> cold or flu a few times, and it felt like my body kicked in

> immediately, and made me well before I truly got sick…..I would

say

> that I have very few problems now…..I am not perfect…..I don't

think

> we can expect that, but I don't feel like I have gotten any worse,

> and my son most certainly has not….

> >

> > Go for it….and don't look back….

> >

> > Conni

> >

>

[Guest guest]

Below is from another post from a contact that

mentions scleroderma:

[low dose naltrexone] Re: I want to try LDN but am afraid

>

>

> E in Missouri

……I have scleroderma, sjrogren's and fibromyalgia.

My son has MS …diagnosed at 19…..through the grace of God and a

good

friend, we were led to LDN very early in my son's illness. We both

researched it and spoke to many people here on this site…..people now

that I would consider good friends…and I was convinced that it was

going to help my son. I listened to all the stories of who it

helped….why would they tell me their success if it was not

true…...I

believed every one of them, because they had nothing to gain from it…

and I know they made a pact with themselves and God, that they would

share the news and try to help someone else…Just as I did. I

thought

of the people who have already died that I loved that I felt might be

alive if I had known about ldn, and could have told them…..

>

> With that being said…I have been on ldn for just over 2

years…..my

son also. I was immediately better…….but I was at a low

point, but I

felt better than I had in a long long time…..whatever little things,

like a mild headache. I know it felt so good to sleep and so good to

be in bed, that I did not want to get up in the morning…..I had so

much less pain, and swelling……much much more energy…..Both my

son and

I said that we felt like our bodies were working correctly for the

first time….and we felt like we had our life back. I don't think I

could go on if I had to watch my son suffer with MS. Ldn has given

me peace of mind because I truly believe my son can live a normal

life now.

>

> If it was up to me I would have everyone I know on ldn, to keep

them healthy……I would run and not stop at anything to get

ldn. Be

patient and give it time to work….I have to say I felt so good on 1.5

mg, I stayed on that for a long time…..Actually felt I was getting a

cold or flu a few times, and it felt like my body kicked in

immediately, and made me well before I truly got sick…..I would say

that I have very few problems now…..I am not perfect…..I don't

think

we can expect that, but I don't feel like I have gotten any worse,

and my son most certainly has not….

>

> Go for it….and don't look back….

>

> Conni

>

[Guest guest]

hi check out the road back foundation site. they have had excellent

results using minocycline to treat SD. i know 3 ppl now who've gone into

complete remission using antibiotics.

monique

[Guest guest]

From: http://www.rxlist.com/plaquenil-drug.htm

" CNS Reactions: Irritability, nervousness, emotional changes,

nightmares, psychosis, headache, dizziness, vertigo, tinnitus,

nystagmus, nerve deafness, convulsions, ataxia. "

tinnitus = ear ringing

>

> I have Lupus, Grave's, Hashi's, Sjogren's. Plenty of other things

as

> well. Doc put me on Plaquenil. Something happened. It felt like

> blood sugar so low I couldn't stay awake, dizziness, deafening

ringing

> in the ears, I forgot everything, including my own address. I could

> go on. A trip to the bathroom was all I could manage and it had me

> exhausted. No docs would return my calls, so I quit taking it.

That

> was Monday. I feel better. My Lupus symptoms are hitting me again

> now. Nurse says Plaquenil doesn't cause blood sugar issues so I

> looked it up. I think I need a new Rheumy.

>

> Anyway, Prednisone isn't going to be a long term solution for me,

and

> I can't live on the Plaquenil again. I tried it for 3 months. I

want

> to try LDN, but my neurologist looked at me like I was crazy. I am

> also afraid because I have been so sick there's not a lot left of me

> if things go worse.

>

> I need some advice. Not medical advice, I know, but nobody here

knows

> anything about this. Has anyone had an experience like mine? Does

> anyone know a doctor in Missouri or Iowa that is familiar with LDN?

> Is it too late for me to try this?

>

> E in Missouri

>

[Guest guest]

No I don't. Sorry

Elena

From: mtlcute <mtlcute@...>low dose naltrexone Sent: Thursday, December 25, 2008 6:29:29 PMSubject: [low dose naltrexone] Re: I want to try LDN but am afraid

> >Hello Elena;> I just found this site yesterday. I have scleroderma, and my lungs> are now inflamed. I have just started chemo last week. Do you know> anyone on this site who also has sclerdoerma and tried LDN?? This> sounds too good to be true. I have been researching for 4 years onmy> illness, and hope this is my final destination! !> god bless> Marla:)> Hello Connie;I am so glad that you and your son are having such

amazing results.Isyour scleroderma diffuse or limited? I think my rhematoid Dr. will kickme out of his office when I see him next month with this info. he issuch a negative Dr.Is there anyone else in the group that has scleroderma that canwrite me their story? Any info would be DEEPLY APPRECIATED! !!Happy Holiday!Marla:)>>>> > Conni,> >> > How much ldn does your son take?> >> > Thanks> > Elena> >> >> >> >> > ____________ _________ _________ __> > From: Conni Lawrence summerwind1@> > low dose naltrexone> > Sent: Wednesday, November 19, 2008 12:18:13 PM> > Subject: [low dose naltrexone]

Re: I want to try LDN but am afraid> >> >> > E in Missouri ……I have scleroderma, sjrogren's andfibromyalgia.> My son has MS …diagnosed at 19…..through the grace of God anda good> friend, we were led to LDN very early in my son's illness. We both> researched it and spoke to many people here on this site…...peoplenow> that I would consider good friends…and I was convinced that it was> going to help my son. I listened to all the stories of who it> helped….why would they tell me their success if it was nottrue…...I> believed every one of them, because they had nothing to gain fromit…> and I know they made a pact with themselves and God, that they would> share the news and try to help someone else…Just as I did. Ithought> of the people who have already died that I loved that I felt might be> alive if I had

known about ldn, and could have told them…..> >> > With that being said…I have been on ldn for just over 2years…..my> son also. I was immediately better…….but I was at a low point,but I> felt better than I had in a long long time…..whatever littlethings,> like a mild headache. I know it felt so good to sleep and so good to> be in bed, that I did not want to get up in the morning…..I had so> much less pain, and swelling……much much more energy…..Both myson and> I said that we felt like our bodies were working correctly for the> first time….and we felt like we had our life back. I don't thinkI> could go on if I had to watch my son suffer with MS. Ldn has given> me peace of mind because I truly believe my son can live a normal> life now.> >> > If it was up to me I would have everyone I know on ldn, to

keep> them healthy……I would run and not stop at anything to get ldn. Be> patient and give it time to work….I have to say I felt so good on1.5> mg, I stayed on that for a long time…..Actually felt I was gettinga> cold or flu a few times, and it felt like my body kicked in> immediately, and made me well before I truly got sick…..I wouldsay> that I have very few problems now…..I am not perfect…..I don'tthink> we can expect that, but I don't feel like I have gotten any worse,> and my son most certainly has not….> >> > Go for it….and don't look back….> >> > Conni> >>