Chest Pain

[Guest guest]

Hi Marita,

I've probably got the most contact of anybody with ALSers using LDN and

can't remember reading of any others having similar problems, especially

at such a low dose. I'd suggest ringing Skip if you can to discuss it

with him. I know you are working on diet and other things too - has he

made any other changes recently? I don't know whether it's the same

thing but with my PLS (little brother of ALS) I very occasionally have

the odd day or two where I find it hard for some reason to take a really

deep breath and if I try I get a pain in my chest. I guess it's a bit

like what MSers call " MS hug " but I've never found any rhyme or reason

for mine and it goes away after a few days not to return for many

months, possibly even a year. Maybe it's something like that unrelated

to the LDN i.e. complete coincidence????

MARITA wrote:

> /*Hello Ingrid, Hello everybody*/

> /**/

> /*I am Marita from Peru, remember I wrote 2 weeks ago, telling that my

> husband was diagnosed ALS (Lou Goering´s desease)4 years ago. Well he

> start LDN 6 days ago, we start with 2.mg from Skip´s*/

> /* pharmacy, the first 4 days when he wake up, he felt like if his

> breathing was a little deeper, but then the 5th day when he wake up,

> he felt like a chest pain and that his breathing was shorter and that

> when he tries to breath deeper he feels the pain chest. Also he says

> he feel his muscles more(I really don´t know exactly what this means),

> he walks, drives his car and can play tennis(not as fast as he used

> to, but he plays 2 or 3 times a week) */

> /*Do any of you heard about this side effects???? I was planning to

> move him to the 3,mg dose. Because I only ask for 1 week 2mg, and then

> I was planning 2 weeks on 3mg, and then start the adequate dose

> 4.5mg. Do any of you tried to open the pill and reduce the dose?,

> maybe we should continue with 2.mg? */

> /**/

> /*thanks a lot Arco iris icono gestual*/

> /**/

> /*Marita*/

*/\/*

[Guest guest]

Hello Ingrid, Hello everybody

I am Marita from Peru, remember I wrote 2 weeks ago, telling that my husband was diagnosed ALS (Lou Goering´s desease)4 years ago. Well he start LDN 6 days ago, we start with 2.mg from Skip´s

pharmacy, the first 4 days when he wake up, he felt like if his breathing was a little deeper, but then the 5th day when he wake up, he felt like a chest pain and that his breathing was shorter and that when he tries to breath deeper he feels the pain chest. Also he says he feel his muscles more(I really don´t know exactly what this means), he walks, drives his car and can play tennis(not as fast as he used to, but he plays 2 or 3 times a week)

Do any of you heard about this side effects???? I was planning to move him to the 3,mg dose. Because I only ask for 1 week 2mg, and then I was planning 2 weeks on 3mg, and then start the adequate dose 4.5mg. Do any of you tried to open the pill and reduce the dose?, maybe we should continue with 2.mg?

thanks a lot

Marita

From: MARITA

Sent: Sunday, October 12, 2008 11:50 AM

low dose naltrexone

Subject: Re: [low dose naltrexone] THANK YOU!!

DEAR INGRID, DEAR GUNN,

THANKS A LOT FOR YOUR HELP, AND YOUR INTEREST!!

I AM SURE NOW, THAT IS A GOOD IDEA TO START LDN IN MY HUSBAND, I HOPE GOD WILL BLESS US GIVING IMPROVEMENT TO MY HUSBAND HEALTH!!!

TELL ME SKIP PHARMACY, IN BOCA RATON, HAS A LOT OF EXPERIENCE IN LDN? DO YOU THINK IS GOOD IDEA TO START WITH 2.MG FOR 2 WEEKS AND THEN INCREASE UNTIL 4.5MG???

AS I TOLD YOU BEFORE, MY HUSBAND HAS 4 YEARS FROM DIAGNOSED, 6 FROM THE DESEASE ONSET. HE DRIVES HIS CAR, HE PLAYS TENNIS, HE CAN SWIM, AND HE CAN GO WALKING FOR 40 MINUTES, NO FATIGUE, HE WORKS, HE SLEEPS ONLY 6 HOURS. BUT HIS SPEECH IS BAD, HIS DYSPHAGIA HAS UPS AND DOWNS, WHEN HE DOES A LOT OF THERAPHYS , AND EXERCISES FOR HIS SWALLOWING AND BREATHING, IT IMPROVES, WHEN HE STOPS THE THERAPY IT STARTS TO GET WORSE, AS YOU KNOW THIS KIND OF DESEASE HAS DIFFERENT ONSET IN ALL ITS VICTIMS, SOME PEOPLE HAD VERY FAST PROGREESION OF THE DESEASE, SOME NOT.

I AM A RECENTLY GRADUATE NUTRITIONIST , AND I THINK , THAT THE NUTRIONAL ASPECT HAS HELP MY HUSBAND VERY MUCH!! IF SOMEONE WITH ALS, WANTS TO NOW ABOUT HIS REGIMEN, DO NOT DOUBT IN EMAIL ME, I WILL SHARE WITH THEM MY HUSBAND NUTRITIONAL PRINCIPLES.

GOD BLESS YOU

MARITA

From: Gunn Dybfest

Sent: Saturday, October 11, 2008 6:11 PM

low dose naltrexone

Subject: Re: [low dose naltrexone] Late Breaking News: Expert in Clinical Immunology to Speak at LDN Conference

Hi Marita,

I have copied and pasted some saved posts:

1. post: Weeks ago I ask the group if LDN really works for ALS, because I was going to talk about it to a friend that was doing nothing for his illness.Now he has 4 days taking it and his breathing has improved a lot, he is talking faster, he is sleeping all night(he had almost 2 years waking at 2-3am), he take naps during the day, a total outcome.I feel great for him and because I put LDN on his road.Thanks to you all for your advices Guill.

2. post: I know of several people with ALS for whom LDN made a significant difference, slowing their progression and making them feel stronger. However, I also know of some who it didn't seem to help, which I guess is not surprising given how nasty ALS is and how quickly it can progress. Given the low cost and minimal/no side effects I'd be tempted to keep on using it anyway.Alternatively, if for peace of mind you'd like to know whether it really is making a difference or not, then ensuring you have at least enough left to last you until you can get another order of it in stop taking it for a while. If you start feeling worse get back on it immediately. If you notice no difference then you know.The only thing I'd suggest is do everything you can to rule out Lyme disease as that can mimic ALS and typically does not respond to LDN, hence could be the real reason the LDN doesn't seem to be working.Gar3. post: It definitely can be of help with ALS - see http://www.low dose naltrexone.org/others.htm#PLS2007 I know of a number of people who have been helped significantly both symptom improvement wise (a bonus!) and progression wise. That said, it is a mongrel of a disease and for some the LDN doesn't seem to help unfortunately. Can't help with a doctor but email Crystal (angelindisguise67 at ).

4.post: I have ALS and have been on LDN for 4 months. LDN helped greatly with my fatigue. I will continue to take it because I have had no side effects, and I feel better on it. My ALS symptoms continue to increase slowly. The LDN costs me $40 a month. Don't give up the fight!!

5.post:

Regarding LDN and ALS. I was diagnosed in 2001 with RRMS. My neuro recommended Copaxone. Did my own research, and decided on LDN. After about six months of use, about 95% of MS affects were gone. I started in May of 2002. I lead a very normal life until Sept. of 2007. Started having new symptoms. Early stages of ALS. Methodiost-Houston has confirmed that I never had MS. My symptoms in 2001 were probably ALS, as there is no other explanation for them. My ALS has progressed, have lost the use of my left arm and have severve dysphagia. Can no longer talk clearly. I am still taking the LDN, and will not stop. The ALS clinic at MEthodist-Houston has taken an interest in my story, and wonder if this is why I was symptom free for 5+ years. In my opinion, trying LDN for ALS could not hurt. What do you have to loose. 6 years on LDN, and all i have gotten from it is a signifigantly better quality of life. No side effects, no problems caused by it. Hope this helps. Email if I can be of assistance.

Ingrid

[low dose naltrexone] Late Breaking News: Expert in Clinical Immunology to Speak at LDN Conferencelow dose naltrexoneDate: Saturday, October 4, 2008, 12:01 PM

Aristo Vojdani, PhD, will be joining the scheduled presentation by Dr. Jaquelyn McCandless at the Fourth LDN Conference on October 11th in L.A. His subject will be "Mechanisms Associated with Low Dose Naltrexone Therapy in Autism and HIV".

Dr. Vojdani obtained his Ph.D. in the field of microbiology and clinical immunology, with postdoctoral studies in tumor immunology. He is a member of the editorial board of three scientific journals, and has published more than 110 scientific articles. He is CEO and Technical Director of Immunosciences Lab., Inc. in Beverly Hills , CA .

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[Guest guest]

I started having chest pain this morning, it's on the left side right under my

left breast. When the pain is pretty bad I feel lightheaded and just weird. I

still haven't gotten my lab results back yet, hopefully Monday. Is this from the

lupus or the DM?

Amy

[Guest guest]

Costochondritis.

Press on sternum, or strike it sharply--to find out whether it is from ribs or

other source, but probably ribs--costochondritis, basically periostitis along

the ribs.  This is very common in ankylosing spondylitis (AS-family--Reiter's

ReA, PsA, crohn's, uDiff, etc) but I don't know about the other arthritides

perhaps it can occur with SLE.

Good Luck with it--the answer is getting out of inflammation by any means

possible,

From: Amy and Jay Willis <tknbychance26@...>

Subject: rheumatic Chest Pain

dermatomyositissupport , lupies ,

, rheumatic ,

OurMyositis

Date: Saturday, June 5, 2010, 11:16 AM

 

I started having chest pain this morning, it's on the left side right

under my left breast. When the pain is pretty bad I feel lightheaded and just

weird. I still haven't gotten my lab results back yet, hopefully Monday. Is this

from the lupus or the DM?

Amy

[Guest guest]

Gall stones are on the right side, if the pain continues i would go to the ER.

 

 

From: la_velvet <la_velvet@...>

Subject: rheumatic Re: Chest Pain

rheumatic

Date: Saturday, June 5, 2010, 1:33 PM

 

gall stones?

>

> I started having chest pain this morning, it's on the left side right under my

left breast. When the pain is pretty bad I feel lightheaded and just weird. I

still haven't gotten my lab results back yet, hopefully Monday. Is this from the

lupus or the DM?

>

> Amy

>

>

>

>

>