Re: My mother's Sjogren's Syndrome

[Guest guest]

Hi Mike,

I know several Sjogren folk using LDN with symptom relief benefit.

Some folks had dry eye / mouth relief and some didn't. I believe MOST

have had relief from fibromyalgia pain.

Personally, my Sjogren-like symptom was dry eyes. I can't say I've

had a dramatic improvement with that but my symptoms weren't severe to

begin with. I just can't wear contacts anymore and that's NOT a big

deal when you consider the bigger picture of autoimmune disease

progression. My ANA antibodies have been reduced to a normal range

now which I attribute to LDN. The ANA are the antibodies often

associated with Sjogrens or Lupus. Also the fatigue that a lot of

Sjogren folk have went away almost immediately for me.

If your Mom decides to try LDN I would suggest benchmarking any

measurable indicators. ie; ANA antibodies. This way when you retest

you have something to compare against.

How old is your Mom..?? Do you have a doctor who will prescribe LDN

and monitor your Mom's progress ??

Best wishes,

Jann

[Guest guest]

Hi Jann,

Sorry for the delay. I missed your email

then I was offline during the big power outage for the NE.

Thanks for your response. My mother is 72

and has what I would consider as fairly advance sjogren’s (first

diagnosed about 3 years ago) and as of about a year ago fibromyalgia pain. She

has great difficulty getting around at this point, great fatigue, some dry eye

but mainly dry mouth and tooth discoloring. She is on a medication for the

fibro pain which comes and goes in intensity but she is always sensitive to

some degree especially down the side of one leg. In the past she has had severe

leg cramps at night and sometime lasting most of the night, but I don’t know

if it was related or the onset of other problems. I’m thankful she has

not had the leg cramps in her current state. We are about to seek a doctor who

will prescribe and manage LDN for her since nothing has had significant impact

it seems. Any advice on finding a doctor or help in general is greatly

appreciated.

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of jannz2

Sent: Wednesday, December 10, 2008

7:22 PM

To:

low dose naltrexone

Subject: [low dose naltrexone] Re:

My mother's Sjogren's Syndrome

Hi Mike,

I know several Sjogren folk using LDN with symptom relief benefit.

Some folks had dry eye / mouth relief and some didn't. I believe MOST

have had relief from fibromyalgia pain.

Personally, my Sjogren-like symptom was dry eyes. I can't say I've

had a dramatic improvement with that but my symptoms weren't severe to

begin with. I just can't wear contacts anymore and that's NOT a big

deal when you consider the bigger picture of autoimmune disease

progression. My ANA antibodies have been reduced to a normal range

now which I attribute to LDN. The ANA are the antibodies often

associated with Sjogrens or Lupus. Also the fatigue that a lot of

Sjogren folk have went away almost immediately for me.

If your Mom decides to try LDN I would suggest benchmarking any

measurable indicators. ie; ANA antibodies. This way when you retest

you have something to compare against.

How old is your Mom..?? Do you have a doctor who will prescribe LDN

and monitor your Mom's progress ??

Best wishes,

Jann

[Guest guest]

for the cramps in the leg she should get enough magnesium

>

> Hi Jann,

>

>

>

> Sorry for the delay. I missed your email then I was offline during

the big

> power outage for the NE.

>

>

>

> Thanks for your response. My mother is 72 and has what I would

consider as

> fairly advance sjogren's (first diagnosed about 3 years ago) and

as of about

> a year ago fibromyalgia pain. She has great difficulty getting

around at

> this point, great fatigue, some dry eye but mainly dry mouth and

tooth

> discoloring. She is on a medication for the fibro pain which comes

and goes

> in intensity but she is always sensitive to some degree especially

down the

> side of one leg. In the past she has had severe leg cramps at

night and

> sometime lasting most of the night, but I don't know if it was

related or

> the onset of other problems. I'm thankful she has not had the leg

cramps in

> her current state. We are about to seek a doctor who will

prescribe and

> manage LDN for her since nothing has had significant impact it

seems. Any

> advice on finding a doctor or help in general is greatly

appreciated.

>

>

>

> _____

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of jannz2

> Sent: Wednesday, December 10, 2008 7:22 PM

> low dose naltrexone

> Subject: [low dose naltrexone] Re: My mother's Sjogren's Syndrome

>

>

>

> Hi Mike,

>

> I know several Sjogren folk using LDN with symptom relief benefit.

>

> Some folks had dry eye / mouth relief and some didn't. I believe

MOST

> have had relief from fibromyalgia pain.

>

> Personally, my Sjogren-like symptom was dry eyes. I can't say I've

> had a dramatic improvement with that but my symptoms weren't

severe to

> begin with. I just can't wear contacts anymore and that's NOT a big

> deal when you consider the bigger picture of autoimmune disease

> progression. My ANA antibodies have been reduced to a normal range

> now which I attribute to LDN. The ANA are the antibodies often

> associated with Sjogrens or Lupus. Also the fatigue that a lot of

> Sjogren folk have went away almost immediately for me.

>

> If your Mom decides to try LDN I would suggest benchmarking any

> measurable indicators. ie; ANA antibodies. This way when you retest

> you have something to compare against.

>

> How old is your Mom..?? Do you have a doctor who will prescribe LDN

> and monitor your Mom's progress ??

>

> Best wishes,

> Jann

>

[Guest guest]

Jann hi there ~ Sonja here ~ I was DX with Sjogrens in 1992 along with MS, Fibro and a Mixed Connecting Tissue issue....lupus, raynands, some other stuff that most people I know have never heard of concerning the lupus.I lived in VA then and went to Hopkins they did do the lip biopsy for the Sjogrens and my eyes were so dry. I have a wonderful eye doctor here in Panama City, FL that plugs the drains and helps keep tears in ones eyes. I couldn't wear contacts for many years now they came out with disposable one day wear and with the plugged drain and the disposable contacts it works for me ~~~~~ Just wanted to chime in there that you can TRY it. It could work for you !!!!!!!!Christmas Blessing to all~Sonja LDN for multiple reasons

[Guest guest]

Hi Mike,

I have saved a lot of chats over the past 4 years from people regarding their experiences with Sjogren's. A large percentage of people have had success with LDN. Please let me know if you would like me to forward them to you. Also, I would be happy to send you a copy of the "welcome e-mail" regarding LDN, and the e-mails regarding what not to take with LDN and The possible beginning side effects. Just let me know if you would like them sent, but sending me an e-mail at Aletha@...

Kindest of regards

Aletha

[Guest guest]

Hi Sonja,

RE: Contacts and dry eyes

Well THANK YOU for the encouraging news on these daily / disposable

contacts. What brand are they so I can ask my eye doctor about them ?

Jann

[Guest guest]

My doctor who is a fibromyalgia doctor prescribed for me and if you have a competent one, he should be willing. Since my doctor is in polis, Md. and is an internal medicine doctor prescribed for me, but as you know, many doctors are ignorant, I dont know if you are anywhere near there. He also practises internal medicine. /Dont know how that works, but for FMS he is very expensive, first visit , but very available and helpful after you see him, and you can correspond by e-MAIL after that. As internal med, I dont know. Let me know and I will send you a number to call for info.

Fibrofan

RE: [low dose naltrexone] Re: My mother's Sjogren's Syndrome

Hi Jann,

Sorry for the delay. I missed your email then I was offline during the big power outage for the NE.

Thanks for your response. My mother is 72 and has what I would consider as fairly advance sjogren’s (first diagnosed about 3 years ago) and as of about a year ago fibromyalgia pain. She has great difficulty getting around at this point, great fatigue, some dry eye but mainly dry mouth and tooth discoloring. She is on a medication for the fibro pain which comes and goes in intensity but she is always sensitive to some degree especially down the side of one leg. In the past she has had severe leg cramps at night and sometime lasting most of the night, but I don’t know if it was related or the onset of other problems. I’m thankful she has not had the leg cramps in her current state. We are about to seek a doctor who will prescribe and manage LDN for her since nothing has had significant impact it seems. Any advice on finding a doctor or help in general is greatly appreciated.

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of jannz2Sent: Wednesday, December 10, 2008 7:22 PMlow dose naltrexone Subject: [low dose naltrexone] Re: My mother's Sjogren's Syndrome

Hi Mike,I know several Sjogren folk using LDN with symptom relief benefit. Some folks had dry eye / mouth relief and some didn't. I believe MOSThave had relief from fibromyalgia pain. Personally, my Sjogren-like symptom was dry eyes. I can't say I'vehad a dramatic improvement with that but my symptoms weren't severe tobegin with. I just can't wear contacts anymore and that's NOT a bigdeal when you consider the bigger picture of autoimmune diseaseprogression. My ANA antibodies have been reduced to a normal rangenow which I attribute to LDN. The ANA are the antibodies oftenassociated with Sjogrens or Lupus. Also the fatigue that a lot ofSjogren folk have went away almost immediately for me. If your Mom decides to try LDN I would suggest benchmarking anymeasurable indicators. ie; ANA antibodies. This way when you retestyou have something to compare against.How old is your Mom..?? Do you have a doctor who will prescribe LDNand monitor your Mom's progress ??Best wishes,Jann

[Guest guest]

Thank you for the suggestion.

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of zahavi

Sent: Thursday, December 18, 2008

10:24 PM

To:

low dose naltrexone

Subject: [low dose naltrexone] Re:

My mother's Sjogren's Syndrome

for the cramps in the leg she should get enough

magnesium

>

> Hi Jann,

>

>

>

> Sorry for the delay. I missed your email then I was offline during

the big

> power outage for the NE.

>

>

>

> Thanks for your response. My mother is 72 and has what I would

consider as

> fairly advance sjogren's (first diagnosed about 3 years ago) and

as of about

> a year ago fibromyalgia pain. She has great difficulty getting

around at

> this point, great fatigue, some dry eye but mainly dry mouth and

tooth

> discoloring. She is on a medication for the fibro pain which comes

and goes

> in intensity but she is always sensitive to some degree especially

down the

> side of one leg. In the past she has had severe leg cramps at

night and

> sometime lasting most of the night, but I don't know if it was

related or

> the onset of other problems. I'm thankful she has not had the leg

cramps in

> her current state. We are about to seek a doctor who will

prescribe and

> manage LDN for her since nothing has had significant impact it

seems. Any

> advice on finding a doctor or help in general is greatly

appreciated.

>

>

>

> _____

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ]

On Behalf Of jannz2

> Sent: Wednesday, December 10, 2008 7:22 PM

> low dose naltrexone

> Subject: [low dose naltrexone] Re: My mother's Sjogren's Syndrome

>

>

>

> Hi Mike,

>

> I know several Sjogren folk using LDN with symptom relief benefit.

>

> Some folks had dry eye / mouth relief and some didn't. I believe

MOST

> have had relief from fibromyalgia pain.

>

> Personally, my Sjogren-like symptom was dry eyes. I can't say I've

> had a dramatic improvement with that but my symptoms weren't

severe to

> begin with. I just can't wear contacts anymore and that's NOT a big

> deal when you consider the bigger picture of autoimmune disease

> progression. My ANA antibodies have been reduced to a normal range

> now which I attribute to LDN. The ANA are the antibodies often

> associated with Sjogrens or Lupus. Also the fatigue that a lot of

> Sjogren folk have went away almost immediately for me.

>

> If your Mom decides to try LDN I would suggest benchmarking any

> measurable indicators. ie; ANA antibodies. This way when you retest

> you have something to compare against.

>

> How old is your Mom..?? Do you have a doctor who will prescribe LDN

> and monitor your Mom's progress ??

>

> Best wishes,

> Jann

>

[Guest guest]

Thanks Fibrofan. We live in Massachusetts and are

beginning our search for a doctor with LDN experience. My mother sees in

addition to her primary care doctor a rheumatologist and a neurologist. We are

bringing her to the neurologist this Tuesday to discuss her fibromyalgia and we

plan to ask about LDN. My mother’s husband is asking her primary care

about LDN tomorrow. We’ll see.

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Jan Goodale

Sent: Friday, December 19, 2008

4:37 PM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Re: My mother's Sjogren's Syndrome

My doctor who is a fibromyalgia doctor prescribed for me and

if you have a competent one, he should be willing. Since my doctor is in

polis, Md. and is an internal medicine doctor prescribed for me, but as you

know, many doctors are ignorant, I dont know if you are anywhere near

there. He also practises internal medicine. /Dont know how that

works, but for FMS he is very expensive, first visit , but very available and

helpful after you see him, and you can correspond by e-MAIL after that.

As internal med, I dont know. Let me know and I will send you a number to call

for info.

Fibrofan

[low dose naltrexone] Re:

My mother's Sjogren's Syndrome

Hi Mike,

I know several Sjogren folk using LDN with symptom relief benefit.

Some folks had dry eye / mouth relief and some didn't. I believe MOST

have had relief from fibromyalgia pain.

Personally, my Sjogren-like symptom was dry eyes. I can't say I've

had a dramatic improvement with that but my symptoms weren't severe to

begin with. I just can't wear contacts anymore and that's NOT a big

deal when you consider the bigger picture of autoimmune disease

progression. My ANA antibodies have been reduced to a normal range

now which I attribute to LDN. The ANA are the antibodies often

associated with Sjogrens or Lupus. Also the fatigue that a lot of

Sjogren folk have went away almost immediately for me.

If your Mom decides to try LDN I would suggest benchmarking any

measurable indicators. ie; ANA antibodies. This way when you retest

you have something to compare against.

How old is your Mom..?? Do you have a doctor who will prescribe LDN

and monitor your Mom's progress ??

Best wishes,

Jann

[Guest guest]

Hi Aletha,

Yes, my sister and I would very much

appreciate whatever you can send us. Thank you! God bless. I will send to you

email below as well.

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Aletha Wittmann

Sent: Friday, December 19, 2008

10:30 AM

low dose naltrexone

Subject: [low dose naltrexone] Re:

My mother's Sjogren's Syndrome

Hi Mike,

I have saved a lot of chats over the past 4 years from

people regarding their experiences with Sjogren's. A large percentage of

people have had success with LDN. Please let me know if you would like me

to forward them to you. Also, I would be happy to send you a copy of the

" welcome e-mail " regarding LDN, and the e-mails regarding what not to

take with LDN and The possible beginning side effects. Just let me know

if you would like them sent, but sending me an e-mail at Aletharedshift

Kindest of regards

Aletha

[Guest guest]

Download the appendix from the googleldn files section. Gives you

ammunition for the doctor...

>

> Thanks Fibrofan. We live in Massachusetts and are beginning our

search for a

> doctor with LDN experience. My mother sees in addition to her

primary care

> doctor a rheumatologist and a neurologist. We are bringing her to the

> neurologist this Tuesday to discuss her fibromyalgia and we plan to ask

> about LDN. My mother's husband is asking her primary care about LDN

> tomorrow. We'll see.

>

> _____

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of Jan Goodale

> Sent: Friday, December 19, 2008 4:37 PM

> low dose naltrexone

> Subject: Re: [low dose naltrexone] Re: My mother's Sjogren's Syndrome

>

>

>

> My doctor who is a fibromyalgia doctor prescribed for me and if you

have a

> competent one, he should be willing. Since my doctor is in

polis, Md.

> and is an internal medicine doctor prescribed for me, but as you

know, many

> doctors are ignorant, I dont know if you are anywhere near there.

He also

> practises internal medicine. /Dont know how that works, but for FMS

he is

> very expensive, first visit , but very available and helpful after

you see

> him, and you can correspond by e-MAIL after that. As internal med,

I dont

> know. Let me know and I will send you a number to call for info.

>

>

>

> Fibrofan

>

> [low dose naltrexone] Re: My mother's Sjogren's Syndrome

>

> Hi Mike,

>

> I know several Sjogren folk using LDN with symptom relief benefit.

>

> Some folks had dry eye / mouth relief and some didn't. I believe MOST

> have had relief from fibromyalgia pain.

>

> Personally, my Sjogren-like symptom was dry eyes. I can't say I've

> had a dramatic improvement with that but my symptoms weren't severe to

> begin with. I just can't wear contacts anymore and that's NOT a big

> deal when you consider the bigger picture of autoimmune disease

> progression. My ANA antibodies have been reduced to a normal range

> now which I attribute to LDN. The ANA are the antibodies often

> associated with Sjogrens or Lupus. Also the fatigue that a lot of

> Sjogren folk have went away almost immediately for me.

>

> If your Mom decides to try LDN I would suggest benchmarking any

> measurable indicators. ie; ANA antibodies. This way when you retest

> you have something to compare against.

>

> How old is your Mom..?? Do you have a doctor who will prescribe LDN

> and monitor your Mom's progress ??

>

> Best wishes,

> Jann

>