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Guest guest
Posted

LDN is helping me with my MS in a major way!

Anyone new to LDN and MS should check out this link, information from Dr.

Lawrence an MD in the United Kingdom who has MS himself.

http://www.msrc.co.uk/index.cfm?fuseaction=show & pageid=628 & CFID=493365 & CFTOK

EN=73471277

Original Message:

-----------------

From: wvmom2two benlorihammond@...

Date: Tue, 11 Nov 2003 17:00:13 -0000

low dose naltrexone

Subject: [low dose naltrexone] New to the Group

<html><body>

<tt>

Hi there!  I just signed up today!  I was diagnosed with MS in <BR>

September and am researching the various types of medication.  I am <BR>

leaning towards LDN, but would like to hear from others with MS.  I'd <BR>

like to know what types of side effects you had and how bad your <BR>

disease was before (like how many flare-ups  you had before compared <BR>

to how many you have now, etc.).  I'd really like to make an educated <BR>

decision regarding this.  Also, I'm not sure my Dr. would be willing <BR>

to prescribe it.  Did you also have that same problem?  Do you just <BR>

have to see several Drs. before finding one that will prescribe it?  <BR>

I'd appreciate any info you could give me.  Thanks so much!<BR>

<BR>

Sincerely,<BR>

<BR>

wvmom2two<BR>

<BR>

</tt>

<br>

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Guest guest
Posted

--- In low dose naltrexone , " wvmom2two " <benlorihammond@n...>

wrote:

> Hi there! I just signed up today! I was diagnosed with MS in

> September and am researching the various types of medication. I am

> leaning towards LDN, but would like to hear from others with MS. I'd

> like to know what types of side effects you had and how bad your

> disease was before (like how many flare-ups you had before compared

> to how many you have now, etc.). I'd really like to make an educated

> decision regarding this. Also, I'm not sure my Dr. would be willing

> to prescribe it. Did you also have that same problem? Do you just

> have to see several Drs. before finding one that will prescribe it?

> I'd appreciate any info you could give me. Thanks so much!

>

> Sincerely,

>

> wvmom2two

=================

Welcome!!

My story is one of the incredible ones. I wish everyone could see symptom

improvement such as I have seen in almost 5 months on 4.5mg of LDN. I had

minimal side effects. In about the 3rd week into my using LDN my hands went

numb for 2 whole weeks. I saw this as an awakening of nerves. This went away

and has not returned. I had a good bit of stiffness in the calfs of my legs for

3 months. I was using Lactose as my filler and it causes a good amount of

stiffness in lots of people with MS. I think the Naltrexone may cause some

amount of stiffness itself in the early going with LDN. From what I've heard,

the best filler is Avicel(cellulose); ask the pharmacist to use Avicel for the

filler. I truly believe that these quirks/temporary increase in symptoms is an

awakening or boosting of our nervous system. If one will ride these symptoms

out I think they will benefit in some sort of way on LDN. Insomnia in the early

days is very common. Taking a sleep aid one to one and a half hour before

taking your LDN can help with the temporary insomnia. Taking the sleep aid

after taking the LDN seems not to work. Here is a link to my story before I

started LDN and after. BTW, we can give you the name of a Dr. who can do a

phone consultation with you for about $125.00, much cheaper than going through

Dr. Bihari. Just let us know when you are ready to try LDN.

My story before I started LDN & after I started LDN. I was one of the lucky

people to have symptom improvement w/LDN. Not everyone will see symptom

improvement but hopefully will see a halt in progression w/LDN

http://www.voy.com/156761/640.html

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Guest guest
Posted

Good articles at that site, ....Thanks....just spent 2 hrs

there...lol

Sally

--- In low dose naltrexone , " david@b... " <david@b...>

wrote:

>

> LDN is helping me with my MS in a major way!

>

> Anyone new to LDN and MS should check out this link, information

from Dr.

> Lawrence an MD in the United Kingdom who has MS himself.

>

>

> http://www.msrc.co.uk/index.cfm?

fuseaction=show & pageid=628 & CFID=493365 & CFTOK

> EN=73471277

>

>

> Original Message:

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

> From: wvmom2two benlorihammond@n...

> Date: Tue, 11 Nov 2003 17:00:13 -0000

> low dose naltrexone

> Subject: [low dose naltrexone] New to the Group

>

>

> <html><body>

>

>

> <tt>

> Hi there!  I just signed up today!  I was diagnosed with MS in <BR>

> September and am researching the various types of medication.  I

am <BR>

> leaning towards LDN, but would like to hear from others with MS. 

I'd <BR>

> like to know what types of side effects you had and how bad your

<BR>

> disease was before (like how many flare-ups  you had before

compared <BR>

> to how many you have now, etc.).  I'd really like to make an

educated <BR>

> decision regarding this.  Also, I'm not sure my Dr. would be

willing <BR>

> to prescribe it.  Did you also have that same problem?  Do you

just <BR>

> have to see several Drs. before finding one that will prescribe

it?  <BR>

> I'd appreciate any info you could give me.  Thanks so much!<BR>

> <BR>

> Sincerely,<BR>

> <BR>

> wvmom2two<BR>

> <BR>

> </tt>

>

> <br>

>

> <!-- |**|begin egp html banner|**| -->

>

> <table border=0 cellspacing=0 cellpadding=2>

> <tr bgcolor=#FFFFCC>

> <td align=center><font size= " -1 " color=#003399><b>

> Sponsor</b></font></td>

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2>ADVERTISEMENT</font><br><a

>

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flix.co

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>

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M=267637.4116732.5333197.1261774/D=egrou

> pmail/S=:HM/A=1853619/rand=109264104 " ></td></tr>

> </table>

>

> <!-- |**|end egp html banner|**| -->

>

>

> <br>

> <tt>

>

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Guest guest
Posted

Hi and welcome to the group. I have had MS for 26 years and last year

especially, I was going downhill. I was taking some serious falls and

smashing my head all the time. Not to mention that i broke my leg in April.

I started LDN in June 2003. I feel better than I have in a real long time.

And I don't fall anymore. Probably because my balance has gotten so much

better. My muscle spasms have improved considerably too. I have been able

to ease up on my muscle spasms medication too.

I think that you need to seriously consider this drug.

Good Luck

Marie

----- Original Message -----

From: " wvmom2two " <benlorihammond@...>

<low dose naltrexone >

Sent: Tuesday, November 11, 2003 12:00 PM

Subject: [low dose naltrexone] New to the Group

> Hi there! I just signed up today! I was diagnosed with MS in

> September and am researching the various types of medication. I am

> leaning towards LDN, but would like to hear from others with MS. I'd

> like to know what types of side effects you had and how bad your

> disease was before (like how many flare-ups you had before compared

> to how many you have now, etc.). I'd really like to make an educated

> decision regarding this. Also, I'm not sure my Dr. would be willing

> to prescribe it. Did you also have that same problem? Do you just

> have to see several Drs. before finding one that will prescribe it?

> I'd appreciate any info you could give me. Thanks so much!

>

> Sincerely,

>

> wvmom2two

>

>

>

>

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Guest guest
Posted

Welcome , I have been on LDN for 8months and also accupuncture for a 14 months.

Finding a dedicated accupuncturist is the key, not the 10 minute clinic accupuncturist. Did this too because insurance covered half , but useless.

The accupuncture seems to release any spastic muscles. I get knots, usually on my upper glutes,(trigger points). I am able to have this done every other week because of the LDN for sure. When I was on Rebif(intefuron) he needed to see me at least 2x/week and still could not get the muscles to release with accupuncture and massage combined.

He cannot believe the difference in me since I started ldn. Sometimes, I could even go without treatment for 3 weeks. The accupuncture has replaced the muscle relaxers . I occasionally need one if I over do, but since ldn, have cut those back to about 1-2x/month.

I find that the accupuncture/massage therapy combo works great, but can get pricey.

LDN may be enough for you. I would try it alone for awhile and then you can tell what works.

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Posted

,

Go to www.copingandprevailing.com If you cannot afford to pay for the book send me your mailing address and I will send it to you. LDN would be a very, very good thing to start ASAP. There are a lot of things that you can do to help yourself.

Regards,

Tom

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Guest guest
Posted

Hi All,

I'm new to the group and enjoying all the tips and tricks to staying

healthy

and keeping my GB in good health.

I'm cleansing my GB due to stones my doctor found on sonogram and found

your website.

later, Dee F.

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

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Posted

Dee, Welcome. I'm curious what you have found that helps so far, and what

you have chosen, out of the myriads of options, as your personal " plan of

attack " (opps, wrong word!) how about what you have chosen as your " plan

to win " ?

Will in Minneapolis

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Posted

Will,

I've done the GallBladder Cleanse, 3 times, so far, plan on continuing it

for a year or more...

to clear all stones and sludge, I got my recipe from the Natural

Alternative, Health Food Store,

they specialize in Nature's Sunshine Herbs/vitamins,

The Cleanse is the most simple I've seen so far and it works, you drink

fresh pressed apple juice

for 2 days,,, 1 gallon per day, taking 1 cascara sagrada, every 4

hours,and 2 fasting plus every

4 hours as well......then on the evening of the 2nd day, you drink a

concoction......of 2 ounce

freshly squeezed lemon juice/ olive oil.......twice, you space this about

30 minutes apart......

and in the next 24 hours you will pass sludge or stones........

on my last cleanse I passed several dozen small green stones.

I'm modifying my fat, to mostly veggies, fruit......and broiled

meats........no fried.........

also limiting the dairy in my diet.

I'm a novice at this so any suggestions would be appreciated.......

thanks, Dee

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

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Guest guest
Posted

Welcome to the group!

Most of us here know how you are feeling - I think all of us have

practically lived in a bubble at some point or another.

I can't answer all your questions, and you are right in thinking

that b/c Xolair is so new there may not be answers to some of them

yet.

Have you been to the Xolair website (www.xolair.com). It doesn't

give a great deal of info, but it's a good resource. I also have

had some luck emailing Genentech, the manufacturer (www.gene.com).

I'm sure you could find a phone number for someone to call and ask

some of your questions directly.

There is some literature that indicates that patients who take

Xolair for about 18 months (and got a benefit from it), continued to

receive some benefit for up to a year after they stopped taking

Xolair. I know that for many of us, we seem to see a slight

worsening in our symptoms just before it's time for our next dose,

so I would imagine that not everyone continues to benefit after they

stop Xolair.

It takes a while for Xolair to work. Greg and some of the others

saw improvements right away. I took about 3 months. I think

took a little longer. Doug took a little over 6 months.

Also, we all seem to have experienced different ranges of

improvement. I've been able to stop almost all my meds, as well as

the allergy shots. Some folks still need their allergy shots and a

fair amount of meds.

Take care. Feel free to post here any time when you get frustrated

with your allergies and asthma. We understand. I'm impressed you

had a child - I was too afraid that all the meds I was taking

(especially the near monthly rounds of antibiotics) would be too

much.

Addy

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Guest guest
Posted

hi! as a teacher -- you are so right -- there are no dumb questions.

=o)

like addy said, xolair is so new, there is not a lot known about it.

while this is frustrating, we all help each other.

i too was referred to as the girl in a bubble. since starting xolair

in january (it took almost 6 months to kick in), i've taken up

mountain biking, and as of the beginning of the summer, was able to

ride a 13 mile " moderate-advanced " course in the depths of the

woods.

beofre xolair, i was on the regular meds, and 2200 mcg a day of

flovent - i'm told that this is just about the equal to pred (not

sure how much, 20 mg sticks in my head, not sure why). i'm now only

on advair 500. i still have the rest of my meds, and sinus issues,

but these are not nearly as bothersome as they were last year. i was

struggling to get by, despite all the meds. now i'm on a little less

and loving life!

i'm not sure the pregnancy risk. you can call xolair and they'll

help you i'm sure.

keep asking questions. the more you know, the better. i'm still

learning..and asking questions!

good luck. keep us posted!

heather

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Posted

GM

Welcome to the group. I hope that Xolair provides relief for your

allergy symptoms.

I've posted this before, but Xolair has changed my life for the

better. I am able to do many things that I never thought I would be

able to do, and I do it on much less medication than ever before.

Basically all I take now are Advair 500 and 10 mg of pred every

other day (for a non allergy-related affliction). Further, when I

do need occasional relief from albuterol, it works better than

before. However, I seldom require this, and whereas I used to carry

an albuterol inhaler everywhere I went, now I never do. Fact is,

when I do need it, I sometimes have trouble finding it (ha ha).

Like others in the group, I was also prone to hospitalization once

or twice yearly. Colds, flu, bronchitis etc. were common and

severe. I don't think I got sick last year - I know I didn't miss a

day of work.

I've been on Xolair for just over a year. When it comes time for my

monthly shot, I usually feel it because my symptoms worsen. I am

also still taking allergy shots. I self-administer both Xolair and

allergy shots at home.

The only 'negative' I would say is that Xolair has not resulted in

significant improvement in my FEV1. My Dr. says that I have had

asthma for so long and done so much damage to my lungs that it is

unlikely that this will recover. This is not the fault of Xolair -

just a reflection of my own expectations.

Good luck.

Greg

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Posted

Even though your rheumatologist may be a very nice person with a good style for dealing with patients he does not sound like he is doing you much good. Plaquenil is perhaps the mildest of the DMARDs (Disease-Modifying Antirheumatic Drugs) and although it is sufficient for some people, most people with RA need something stronger. Methotrexate is probably the most commonly used RA drug and helps a lot more people than Plaquenil does. Biologics are newer, stronger, and much more expensive drugs. If your rheumatologist won't order some more potent drug then I suggest that you should change doctors. If RA is not treated strongly enough it can lead to permanent damage, some of which can be helped with joint replacement. It is importnt to get aggressive treatment early, and it sounds like you are not getting that. God bless.

----- Original Message ----- -

From: maggiemay_1966

Rheumatoid Arthritis

Sent: Wednesday, December 01, 2004 2:58 PM

Subject: New to the group

Hello all,I am so glad I found this group, Sometimes I feel really alone. I was diagnosed with RA about a year or so ago. My rheumatologist has me on Plaquinil (I may have missed spelled this sorry) twice a day and Mobic but I don't seem to be getting any relief. I hurt all the time and I feel like my muscles are starting to tighten up and it is hard for me to get around. I am only 38 and I feel like I am 98. I know their are lots of people with RA and they are working and doing all the things in life that they want to. I don't feel like my doctor is listening to me. He is a wonderful doctor and I wouldn't want to change. Maybe I am not getting it across to him. I just always feel bad anymore. For a while I had good and bad days now it seems like I just hurt no matter what I am doing. Sorry this is so long, I guess maybe I just needed someone to vent to. Thanks

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Posted

Hi,

No need to apologise for anything, we all understand, part of the 'group therapy' is having a good old moan and vent. We are here so support each other....Welcome to a great group.

hugs Lynne

"What lies behind us and what lies before us are tiny matters, Compared to what lies within us."

'' If we lived as wolves do, the planet would be a lot cleaner place! ''

-------Original Message-------

From: maggiemay_1966

Date: 12/01/04 22:58:23

Rheumatoid Arthritis

Subject: New to the group

Hello all,I am so glad I found this group, Sometimes I feel really alone. I was diagnosed with RA about a year or so ago. My rheumatologist has me on Plaquinil (I may have missed spelled this sorry) twice a day and Mobic but I don't seem to be getting any relief. I hurt all the time and I feel like my muscles are starting to tighten up and it is hard for me to get around. I am only 38 and I feel like I am 98. I know their are lots of people with RA and they are working and doing all the things in life that they want to. I don't feel like my doctor is listening to me. He is a wonderful doctor and I wouldn't want to change. Maybe I am not getting it across to him. I just always feel bad anymore. For a while I had good and bad days now it seems like I just hurt no matter what I am doing. Sorry this is so long, I guess maybe I just needed someone to vent to. Thanks

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Posted

Welcome to the group Dennis. My name is Harold and I am 77 years old and have had RA since Dec. 2001. I am pretty well controlled with Remicade and Methotrexate and so far don't seem to have any permanent damage.

I notice from your screen name that you seem to be in the military. I am very proud of all our service men and women and think they are doing a great job for our country.

Please feel free to join any discussions or post any questions or topics. We like to hear from you. God bless.

----- Original Message -----

From: SGT Brock

Rheumatoid Arthritis

Sent: Wednesday, June 01, 2005 5:44 PM

Subject: New to the group

Hello,My name is Dennis. I am 32 years old and live in Atlanta GA. I wasdiagnosed with RA in August of 2003. As probally many of you I take a large assortment of meds from enbrel to ambien. I look forward to being part of the group.Thanks,Dennis

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Guest guest
Posted

Hello Dennis,

this is a good place to be with R/A and even other auto immun disorders very good informitive people and helpfull to drop in just shout or whine what ever helps a little of it all happens here on my end but nothing helps me see you later .

johnSGT Brock <dbrock119@...> wrote:

Hello,My name is Dennis. I am 32 years old and live in Atlanta GA. I wasdiagnosed with RA in August of 2003. As probally many of you I take a large assortment of meds from enbrel to ambien. I look forward to being part of the group.Thanks,Dennis__________________________________________________

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Posted

Welcome to the group Dennis!

Dorey

----- Original Message -----

From: " SGT Brock " <dbrock119@...>

<Rheumatoid Arthritis >

Sent: Wednesday, June 01, 2005 5:44 PM

Subject: New to the group

> Hello,

>

> My name is Dennis. I am 32 years old and live in Atlanta GA. I was

> diagnosed with RA in August of 2003. As probally many of you I take a

> large assortment of meds from enbrel to ambien. I look forward to

> being part of the group.

>

> Thanks,

>

> Dennis

>

>

>

>

>

>

>

>

>

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Guest guest
Posted

Hi Dennis I just wanted to welcome you to the group sorry you have

RA I have have it for 13 years now I am on remicade and plaqunial

and a hole lot of meds good luck

Sherrie

> Hello,

>

> My name is Dennis. I am 32 years old and live in Atlanta GA. I

was

> diagnosed with RA in August of 2003. As probally many of you I

take a

> large assortment of meds from enbrel to ambien. I look forward to

> being part of the group.

>

> Thanks,

>

> Dennis

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Guest guest
Posted

G'Day Dennis, welcome to our group. As I am sure you are finding

out ,there are many here that truely care and know what you are

going thru.My name is Skye ..give me a hollar anytime IM

@..Gonzo_skye......................Skye

> Hello,

>

> My name is Dennis. I am 32 years old and live in Atlanta GA. I

was

> diagnosed with RA in August of 2003. As probally many of you I

take a

> large assortment of meds from enbrel to ambien. I look forward to

> being part of the group.

>

> Thanks,

>

> Dennis

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Guest guest
Posted

Hi all,

I would like to say thanks to all those who have emailed. I

appreciate everyones kindness and concern as it is hard to find

anyone that really understands what we with RA go through. Again I

thank all and I am glad to be part of this wonderful group. Does any

one in here live around the Atlanta or know of any support groups

that may be in the area as well.

Sincerely,

Dennis Brock

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Posted

I'm far removed from Atlanta but I have heard that the Arthritis Foundation has many local support groups. Perhaps you can find one there. http://www.arthritis.org/default.asp I hope you can find what you are looking for. God bless.

----- Original Message -----

From: SGT Brock

Rheumatoid Arthritis

Sent: Sunday, June 05, 2005 5:54 PM

Subject: Re: New to the group

Hi all,I would like to say thanks to all those who have emailed. I appreciate everyones kindness and concern as it is hard to find anyone that really understands what we with RA go through. Again Ithank all and I am glad to be part of this wonderful group. Does anyone in here live around the Atlanta or know of any support groupsthat may be in the area as well.Sincerely, Dennis Brock

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Posted

Hi Joy My name is Sherrie and I am from Oklahoma I have RA and

osteoarthritis and a few other types of arthritis and lupus I am 52

Welcome to the group sorry you have to be here We like doing the alot

of the same things and a lot of it I can't do any more because of the

arthritis I have good days and bad days more bad than good I am going

to have to have a knee replacement here in the near futher you can e-

mail me any time you want at scorn720@... take care Sherrie

--- In Rheumatoid Arthritis , " Joy " <Joy212@v...>

wrote:

> Hi I am new to the group.

> I look forward to getting to know you all.

> I have osteoarthritis. I have good days and bad days,

> but they are more good days since I am no longer working.

> I am from Ohio and am 60. I like to read, cross-stitch and quilt,

> love the outdoors, camping and fishing.

> I also visit my mother in the nursing home, she has crippling

> arthritis and fibromyalgia and is in constand pain, has been for

> years. They have her on oxycontin 2 times a day and 1-2 percosets

> every 4 hours as needed. I visit her each day, she is ok in her

mind,

> just her poor body is worn out . I look forward to being a part of

> the group and reading all the posts.

> Joy

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Posted

Hi Sherrie,

Thank you for writing back. I too have many things wrong

with me, but as long as I can still do for myself I am happy.

I am slow sometimes getting things done, but I live alone so

my house does not get really dirty, just messy.

Keep us posted on your knee surgery so we can

pray for you.I have one knee that gives me fits

sometimes. lol...Joy

----- Original Message -----

From: Sherrie

Rheumatoid Arthritis

Sent: Friday, July 08, 2005 8:01 AM

Subject: Re: New To The Group

Hi Joy My name is Sherrie and I am from Oklahoma I have RA and osteoarthritis and a few other types of arthritis and lupus I am 52 Welcome to the group sorry you have to be here We like doing the alot of the same things and a lot of it I can't do any more because of the arthritis I have good days and bad days more bad than good I am going to have to have a knee replacement here in the near futher you can e-mail me any time you want at scorn720@... take care Sherrie> Hi I am new to the group.> I look forward to getting to know you all.> I have osteoarthritis. I have good days and bad days,> but they are more good days since I am no longer working.> I am from Ohio and am 60. I like to read, cross-stitch and quilt,> love the outdoors, camping and fishing. > I also visit my mother in the nursing home, she has crippling> arthritis and fibromyalgia and is in constand pain, has been for> years. They have her on oxycontin 2 times a day and 1-2 percosets> every 4 hours as needed. I visit her each day, she is ok in her mind,> just her poor body is worn out . I look forward to being a part of> the group and reading all the posts. > Joy

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.323 / Virus Database: 267.8.9/39 - Release Date: 7/4/2005

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Posted

Joy:

Welcome to the group! It's a great place to post questions or just

read what advice others may have to offer. Above all, it's an

incredible form of support for those suffering with Arthritis or other

related diseases.

All the best,

> Hi I am new to the group.

> I look forward to getting to know you all.

> I have osteoarthritis. I have good days and bad days,

> but they are more good days since I am no longer working.

> I am from Ohio and am 60. I like to read, cross-stitch and quilt,

> love the outdoors, camping and fishing.

> I also visit my mother in the nursing home, she has crippling

> arthritis and fibromyalgia and is in constand pain, has been for

> years. They have her on oxycontin 2 times a day and 1-2 percosets

> every 4 hours as needed. I visit her each day, she is ok in her

mind,

> just her poor body is worn out . I look forward to being a part of

> the group and reading all the posts.

> Joy

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