LDN and Lupus

[Guest guest]

Hello, Newbie here.

Very new. I just learned of LDN on this past weekend(from my uncle,

and pharmicist). I was wondering if anyone could point me in the

direction of LDN users with lupus? I wanted to ask some questions(if

this is covered in previous posts, I apologize, I was only able to

read back about a hundred posts before realizing reading them all

wasn't something I could do in a day....).

I am 26, and believed to be suffering from Lupus(having insurance

issues...no money, no local doctor, constant fighting...unable to see

Rheumatologist yet). I have many other health issues that seem to also

be treatable with LDN. If anyone can point me out in the right

direction, I would be ever grateful!

Thanks in advance!

[Guest guest]

Hello everyone, I am now at week 6 of using LDN 4.5, my CFS has nearly

vanished, and is no longer a major difference in my life, which is a big plus

for me. As well as my fibro is much less noticable, and joint pain much

improved. As well as the major hair loss I had going on has stopped, and sores

from the sun healed. I feel LDN has either slowed, halted my progression as

well as helped my bad flare go away. I have Lupus SLE, and kidney involvement,

no more kidney problems at all now. I am also taking many supplements as well

as glyconutrients(homemade version). But I want to thank you all for this

wonderful site and all the information provided here. I am doing the Liquid

LDN, and have also on a few ocassions tried it during the morning, felt like

drinking a bottle of Jolt if you know what I mean. Very increased energy on

those days.

Thank you again, and I would love to hear from other Lupies that are using LDN

and what they have experienced.

Sincerely,

Betty

Copy of post is posted by .

[Guest guest]

>

> Hello, Newbie here.

> Very new. I just learned of LDN on this past weekend(from my

uncle,

> and pharmicist). I was wondering if anyone could point me in the

> direction of LDN users with lupus? I wanted to ask some questions

(if

> this is covered in previous posts, I apologize, I was only able to

> read back about a hundred posts before realizing reading them all

> wasn't something I could do in a day....).

> I am 26, and believed to be suffering from Lupus(having insurance

> issues...no money, no local doctor, constant fighting...unable to

see

> Rheumatologist yet). I have many other health issues that seem to

also

> be treatable with LDN. If anyone can point me out in the right

> direction, I would be ever grateful!

> Thanks in advance!

I'm a newbie too and have the same question: where are the SLE folks

using LDN? The LDN homepage talks about good results, but not in

detail and I'm not finding much anecdotal support anywhere yet. All

hints and clues accepted and appreciated!

I found out about LDN via google search on lupus 3 days ago and got

a script from my rheumatologist yesterday, filled it today and am

starting on 3mg tonight. I am in the diagnostic phase still and most

likely have central nervous system lupus. Large leision popped up on

my spinal cord in August. Neuro ruled out MS. I have a high double

stranded dna antibody titer, a slightly elevated ANA and that's

about it other than the lesion spotted by 2 MRIs. Lots of peripheral

neuropathy, slow left leg, etc. I'm beginning to have problems with

vision in my right eye, so I'm not wasting any time in trying this

stuff!

Thanks for this great site and if anyone finds Betty or another

group dealing with lupus and ldn please let me know. Thanks,

>

[Guest guest]

Hello Anri & ,

I can send you a copy of the welcome e-mail for MS, it may have some

information that would help even though it is mostly about MS.

Just let me know

Also, please keep us all posted on how things go with LDN.

Aletha

[low dose naltrexone] Re: LDN and Lupus

>

>>

>> Hello, Newbie here.

>> Very new. I just learned of LDN on this past weekend(from my

> uncle,

>> and pharmicist). I was wondering if anyone could point me in the

>> direction of LDN users with lupus? I wanted to ask some questions

> (if

>> this is covered in previous posts, I apologize, I was only able to

>> read back about a hundred posts before realizing reading them all

>> wasn't something I could do in a day....).

>> I am 26, and believed to be suffering from Lupus(having insurance

>> issues...no money, no local doctor, constant fighting...unable to

> see

>> Rheumatologist yet). I have many other health issues that seem to

> also

>> be treatable with LDN. If anyone can point me out in the right

>> direction, I would be ever grateful!

>> Thanks in advance!

>

> I'm a newbie too and have the same question: where are the SLE folks

> using LDN? The LDN homepage talks about good results, but not in

> detail and I'm not finding much anecdotal support anywhere yet. All

> hints and clues accepted and appreciated!

> I found out about LDN via google search on lupus 3 days ago and got

> a script from my rheumatologist yesterday, filled it today and am

> starting on 3mg tonight. I am in the diagnostic phase still and most

> likely have central nervous system lupus. Large leision popped up on

> my spinal cord in August. Neuro ruled out MS. I have a high double

> stranded dna antibody titer, a slightly elevated ANA and that's

> about it other than the lesion spotted by 2 MRIs. Lots of peripheral

> neuropathy, slow left leg, etc. I'm beginning to have problems with

> vision in my right eye, so I'm not wasting any time in trying this

> stuff!

> Thanks for this great site and if anyone finds Betty or another

> group dealing with lupus and ldn please let me know. Thanks,

>>

>

>

>

>

>

>

>

>

>

[Guest guest]

*Is admiring people with cooperative doctors who actually seem to

care!*

Well, I WAS finally able to get some blood tests(had to go back and

re-do them because they didn't know their lab pick up times had

changed...), so now I wait two weeks and see. I will know if I truly

have Lupus. He is also testing for a bunch of other stuff as well.

It took my father and I both going in with a HUGE stack of papers,

and me listing my ENTIRE accident, surgery, family medical, and pain

history without him INTERRUPTING me. He tried for the whole MRI

thing again, and X-rays, which he says look fine..so, I dunno. I

passed on the MRI, I can't afford that again. I think I may have to

go for some other tests though. There could be scar tissue from past

surgeries, and a past injury (had a 500 pound loading bar fall

across my stomach when I was 17 at work). I will be happy to finally

find out the cause of the constant pain on my right side(which is

now causing numbness, lack of circulation, and constant muscle

spasms in my back and down my leg), but at the same time, I am

scared. IF it isn't Lupus, then it is probably something I can't

afford to maintain and care for, and I am back at square one. We

tried to get LDN on the account for my frequent Urination and IBS

issues, but he wouldn't go for it. He wants to know what's wrong

with me before he prescribes ANYTHING. We were hoping he would let

us try it...because it really can't hurt me, and I could have

partial relief in my life. At least my doctor is on the ball now.

Though, I get the feeling it's to GET RID of me. He's tired of

dealing with it, and he's the only local doctor I can go to.

*feels embarrassed at the long, personnal post*

Sorry to tell so much, but I wanted to be honest. I will hopefully

know some results soon, and if LDN can't help me, I will still stay

on site, because my sister-in-law suffers from MS, and 2 Great Aunts

from Lupus. I am trying to find out as much as I can for them as

well!

I did get a welcome package, and I am once again thanking all who

have been helping me!

Anri

> >>

> >> Hello, Newbie here.

> >> Very new. I just learned of LDN on this past weekend(from my

> > uncle,

> >> and pharmicist). I was wondering if anyone could point me in the

> >> direction of LDN users with lupus? I wanted to ask some

questions

> > (if

> >> this is covered in previous posts, I apologize, I was only able

to

> >> read back about a hundred posts before realizing reading them

all

> >> wasn't something I could do in a day....).

> >> I am 26, and believed to be suffering from Lupus(having

insurance

> >> issues...no money, no local doctor, constant fighting...unable

to

> > see

> >> Rheumatologist yet). I have many other health issues that seem

to

> > also

> >> be treatable with LDN. If anyone can point me out in the right

> >> direction, I would be ever grateful!

> >> Thanks in advance!

> >

> > I'm a newbie too and have the same question: where are the SLE

folks

> > using LDN? The LDN homepage talks about good results, but not in

> > detail and I'm not finding much anecdotal support anywhere yet.

All

> > hints and clues accepted and appreciated!

> > I found out about LDN via google search on lupus 3 days ago and

got

> > a script from my rheumatologist yesterday, filled it today and am

> > starting on 3mg tonight. I am in the diagnostic phase still and

most

> > likely have central nervous system lupus. Large leision popped

up on

> > my spinal cord in August. Neuro ruled out MS. I have a high

double

> > stranded dna antibody titer, a slightly elevated ANA and that's

> > about it other than the lesion spotted by 2 MRIs. Lots of

peripheral

> > neuropathy, slow left leg, etc. I'm beginning to have problems

with

> > vision in my right eye, so I'm not wasting any time in trying

this

> > stuff!

> > Thanks for this great site and if anyone finds Betty or another

> > group dealing with lupus and ldn please let me know. Thanks,

[Guest guest]

Hi Anri,

I totally am behind what you said regarding getting started on LDN.

Understandably your doctor wants to know what is wrong, but what if LDN

works for what ever ailment that you have? I would want to start working on

your immune system right away. What other things would be similar for all

auto-immune diseases? I know with MS what diets and supplements would be

good, but I don't know specifically for Lupus. Perhaps you can put the 2

diet and supplement lists together and see what things they have in common

and do them, so that it would be beneficial for either ailment.

In the welcome list for MS you will find a couple of lists for supplements,

plus Dr. Lawrence's suggestions. Perhaps someone on the site has a list for

Lupus supplements, and suggested diets. At least you can get moving on

helping your immune system out. Then when you get started on LDN it should

work out even better.

Hang in there Anri, you will get to the bottom of all of this and maybe LDN

will be a big help (I am hoping).

Aletha

[low dose naltrexone] Re: LDN and Lupus

> *Is admiring people with cooperative doctors who actually seem to

> care!*

> Well, I WAS finally able to get some blood tests(had to go back and

> re-do them because they didn't know their lab pick up times had

> changed...), so now I wait two weeks and see. I will know if I truly

> have Lupus. He is also testing for a bunch of other stuff as well.

> It took my father and I both going in with a HUGE stack of papers,

> and me listing my ENTIRE accident, surgery, family medical, and pain

> history without him INTERRUPTING me. He tried for the whole MRI

> thing again, and X-rays, which he says look fine..so, I dunno. I

> passed on the MRI, I can't afford that again. I think I may have to

> go for some other tests though. There could be scar tissue from past

> surgeries, and a past injury (had a 500 pound loading bar fall

> across my stomach when I was 17 at work). I will be happy to finally

> find out the cause of the constant pain on my right side(which is

> now causing numbness, lack of circulation, and constant muscle

> spasms in my back and down my leg), but at the same time, I am

> scared. IF it isn't Lupus, then it is probably something I can't

> afford to maintain and care for, and I am back at square one. We

> tried to get LDN on the account for my frequent Urination and IBS

> issues, but he wouldn't go for it. He wants to know what's wrong

> with me before he prescribes ANYTHING. We were hoping he would let

> us try it...because it really can't hurt me, and I could have

> partial relief in my life. At least my doctor is on the ball now.

> Though, I get the feeling it's to GET RID of me. He's tired of

> dealing with it, and he's the only local doctor I can go to.

> *feels embarrassed at the long, personnal post*

> Sorry to tell so much, but I wanted to be honest. I will hopefully

> know some results soon, and if LDN can't help me, I will still stay

> on site, because my sister-in-law suffers from MS, and 2 Great Aunts

> from Lupus. I am trying to find out as much as I can for them as

> well!

> I did get a welcome package, and I am once again thanking all who

> have been helping me!

> Anri

>

>

>> >>

>> >> Hello, Newbie here.

>> >> Very new. I just learned of LDN on this past weekend(from my

>> > uncle,

>> >> and pharmicist). I was wondering if anyone could point me in the

>> >> direction of LDN users with lupus? I wanted to ask some

> questions

>> > (if

>> >> this is covered in previous posts, I apologize, I was only able

> to

>> >> read back about a hundred posts before realizing reading them

> all

>> >> wasn't something I could do in a day....).

>> >> I am 26, and believed to be suffering from Lupus(having

> insurance

>> >> issues...no money, no local doctor, constant fighting...unable

> to

>> > see

>> >> Rheumatologist yet). I have many other health issues that seem

> to

>> > also

>> >> be treatable with LDN. If anyone can point me out in the right

>> >> direction, I would be ever grateful!

>> >> Thanks in advance!

>> >

>> > I'm a newbie too and have the same question: where are the SLE

> folks

>> > using LDN? The LDN homepage talks about good results, but not in

>> > detail and I'm not finding much anecdotal support anywhere yet.

> All

>> > hints and clues accepted and appreciated!

>> > I found out about LDN via google search on lupus 3 days ago and

> got

>> > a script from my rheumatologist yesterday, filled it today and am

>> > starting on 3mg tonight. I am in the diagnostic phase still and

> most

>> > likely have central nervous system lupus. Large leision popped

> up on

>> > my spinal cord in August. Neuro ruled out MS. I have a high

> double

>> > stranded dna antibody titer, a slightly elevated ANA and that's

>> > about it other than the lesion spotted by 2 MRIs. Lots of

> peripheral

>> > neuropathy, slow left leg, etc. I'm beginning to have problems

> with

>> > vision in my right eye, so I'm not wasting any time in trying

> this

>> > stuff!

>> > Thanks for this great site and if anyone finds Betty or another

>> > group dealing with lupus and ldn please let me know. Thanks,

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Aletha,

Interesting...I hadn't thought of that *weird, considering how many

supplements and diet changes I made for everything else*.

I also plan and taking the candida test(I keep forgetting and

drinking water accidently when I wake up... I suffered from yeast

infections constantly for about 6 years, and had to change a lot in

my life to prevent them. No yeast infections in last 2 years, but

that doesn't mean that it didn't just move itself internally.

My boss also suffers from Lupus, and I talk with her quite a bit

about proper diet and nutrition(she's not convinced about LDN right

now, but I keep sending info...However, she has a brain tumor that

she is taking Chemotherapy (sp?) for at the moment, so I don't know

if she could even try LDN right now. She got the brain cancer from

using Black hair dye. I used to believe it a " hairdresser's myth " *I

had a cosmotology liscense for a while, but couldn't handle the

chemicals*, but we found that with her Lupus making her immune

system so low, it just made circumstances right for the dye to cause

the cancer (doctors said this, it's NOT speculation, anyone with LOW

IMMUNITY SHOULD NEVER USE BLACK HAIR DYE!). She was blown away *we

all were*. Anyways, she is allergic to ALL ocean/sea food, and

roots, sprouts and such, so, so far, there are VERY FEW herbal,

alternative remedies that she can try. It's almost as if her body is

agianst her. I, however, am not....so I shall try to find everything

she and I talked about, and re-do my supplment and diet plan again.

Thanks for the heads up! Wish me luck not just for myself, but for

all the others in my life I am trying hard to help!

I thank you again for your information, ideas, and suggestions!

Anri

>

> Hi Anri,

>

> I totally am behind what you said regarding getting started on

LDN.

> Understandably your doctor wants to know what is wrong, but what

if LDN

> works for what ever ailment that you have? I would want to start

working on

> your immune system right away. What other things would be similar

for all

> auto-immune diseases? I know with MS what diets and supplements

would be

> good, but I don't know specifically for Lupus. Perhaps you can

put the 2

> diet and supplement lists together and see what things they have

in common

> and do them, so that it would be beneficial for either ailment.

>

> In the welcome list for MS you will find a couple of lists for

supplements,

> plus Dr. Lawrence's suggestions. Perhaps someone on the site has

a list for

> Lupus supplements, and suggested diets. At least you can get

moving on

> helping your immune system out. Then when you get started on LDN

it should

> work out even better.

>

> Hang in there Anri, you will get to the bottom of all of this and

maybe LDN

> will be a big help (I am hoping).

>

> Aletha

[Guest guest]

Joyce,

That is great news about your friend and her doctor!

I also very much agree with you about staying 'on topic'!

I deleted your post in my reply, as you requested. However, I find that

sometimes I need to look back to see what the question or topic was.

Perhaps, if we put new replies at the TOP of the string, they would be

easily found. (Occasionally, I too, have had trouble finding the new

replies.)

[Guest guest]

email crystel first if she cannot I can send you to the right  placecyndiOn Jun 27, 2006, at 5:18 PM, Crystal wrote:Hi Everyone,I also have started an LDN Dr List for the US and other Countries so if anyone is looking you can email me too and I'll look on my list to see if I have any in your area and email you their information. Always,Crystal Cyndi Lenz <psychrn@...> wrote:Joyce first of all did it all get worse after 9-11. oh my-what horrible thing to go through. The stress alone can throw you over the edge!   As far as doctors I can tell you there are plenty of doctors that will prescribe ldn and if anyone on this cannot find a doctor contact me and I will help. I have been creating (I finished the rough cut this morning and adam has it to finish it up ) so we are getting a dvd from the ldn conference and if this doesn't convince doctors to at least have a conversation about ldn I'm not sure what will.the third thing is - I know i try to be congnizant of my posts but I know there are many people on this list that are so disabled that they can barely eack out an email never mind do what it takes to lope of the end.so I think if anyone could understand that it would be the people here.cyndiOn Jun 27, 2006, at 11:40 AM, dollsesq wrote: