Re: Updates from those on Low-Dose Naltrexone therapy?

January 7, 2011

Hi Just Me,

I have been on LDN since April of 2010. Currently on 4.5 mg per day. I like it

because I don't have to take tramadol, robaxin (muscle relaxer) or any other

medication for pain (like Neurontin, Cymbalta or Lyrica). I was never on

stronger meds for pain. The tramadol was enough to take most of the pain away.

I never got relief during change in barometric pressure changes.

I experience 90% pain relief. That level drops if I have cheated and had wheat

(takes alot) or dairy (doesn't take as much). Also, not much help on barometric

pressure change days but better than with tramadol. If I have overdone it

(rarely, anymore), then I will take Tylenol Arthritis which works better for me

than regular Extra Strength Tylenol. Not sure why.

I was on T3 (same dosage as you) and have remained on that level ever since. No

drop for me.

It takes away my fibro pain, my spinal stenosis pain (unless I aggravate it) and

my ME/CFIDS joint pain.

I make sure to always have enough. I purchase mine from India and it runs me $16

for 3 months. NO prescription. I mix it with water and take it by syringe

before bedtime.

I haven't researched LND in a while but this is the main page I send to people:

http://www.low dose naltrexone.org/

HTH,

Marti

>

> Hi,

>

> I'm wondering if anyone who has tried or is currently using LDN would be

willing to offer an update on their experience?

>

> Also, I'd sure appreciate it if you would list your preferred websites for LDN

.... an awful lot have popped up since I last looked at it as a possible option.

>

> TIA,

>

> Liz

>

January 8, 2011

I have CFS and have been on LDN since 9/2010 I started at 1.5 and now take

3.5.

In general it has helped quite a bit with my fatigue.

I have been taking Adderall for 5 yrs just to be able to get out of bed

everyday, or leave the house and I have been able to cut the dose in half since

LDN.

It has also helped with my allergies. Also have not had to take medicine for

migraines since starting LDN

I get mine from All Day Chemist which cost $75 a year.

>

> Hi,

>

> I'm wondering if anyone who has tried or is currently using LDN would be

willing to offer an update on their experience?

>

> Also, I'd sure appreciate it if you would list your preferred websites for LDN

.... an awful lot have popped up since I last looked at it as a possible option.

>

> TIA,

>

> Liz

>

January 8, 2011

> I'm wondering if anyone who has tried or is currently using LDN would be

willing to offer an update on their experience?

>

I have used LDN since April 2010. I started low and took a while to build up,

but have taken the fulll 4.5mg dose nocte since about August.

It has really helped my mobility and muscle spasmsn and muscle solidness

problems. I used to suffer muscle solidness in my legs after walking short

distances. I have been to a shopping precinct today with no muscle solidness!

Without it by now my muscles in my legs would be really uncomfortable and solid

feeling for 24 hours.

Possibly incrememtal improvements in functioning, but really the main benefits

for me has been for mucles.

Fiona.

January 10, 2011

On 2011-01-07, just_me3 <just_me3@...> wrote:

> I'm wondering if anyone who has tried or is currently using LDN would be

> willing to offer an update on their experience?

Just in case you missed it if I posted it before:

I tried very low dose naltrexone (LDN / VLDN) for a month,

but had severe nausea, vomiting that was delayed for many

hours, delayed gastric emptying, sweating, diarrhea, and

worse IBS. This was at only 0.5 per day every other day and

1.25mg + Benadryl (to try to help prevent some of the nausea

and for better sleep and for allergies) on the other days.

The severe nausea and other symptoms happened 3 times during

the month, with more moderate nausea the rest of the time.

Still recovering from that. It is as if they gave me full

dose instead. It was crushed tablets from a compounding

pharmacy. Also bad sinuses, lung congestion, worse mold

symptoms. I have heard that LDN can make candida issues

worse. But it was raining also.

--

The Kafka Pandemic: http://thekafkapandemic.blogspot.com

I support WPI: http://www.wpinstitute.org/xmrv/index.html --{Moderator: removed

solicitation}

I want to see the original (pre-hold) Lo et al. 2010 NIH/FDA/Harvard MLV paper.

January 11, 2011

Hi ,

I'm really sorry you had such a bad reaction to LDN; I hope you recover from the

experience soon.

I've read that bad reactions can be due to gluten and/or casein intolerance.

Were you on a gluten/casein free diet during (and for a short while prior at

least) your LDN trial? Or do you have other ideas as to what caused your bad

reaction?

I also read that LDN can exacerbate yeast problems.

Liz

Re: Updates from those on Low-Dose Naltrexone

therapy?

Just in case you missed it if I posted it before:

I tried very low dose naltrexone (LDN / VLDN) for a month,

but had severe nausea, vomiting that was delayed for many

hours, delayed gastric emptying, sweating, diarrhea, and

worse IBS. This was at only 0.5 per day every other day and

1.25mg + Benadryl (to try to help prevent some of the nausea

and for better sleep and for allergies) on the other days.

The severe nausea and other symptoms happened 3 times during

the month, with more moderate nausea the rest of the time.

Still recovering from that. It is as if they gave me full

dose instead. It was crushed tablets from a compounding

pharmacy. Also bad sinuses, lung congestion, worse mold

symptoms. I have heard that LDN can make candida issues

worse. But it was raining also.

January 11, 2011

Hello Liz,

I've been taking LDN for... um, I think about 5 months now. My regular

doctor wrote an Rx for me after I showed him some info I'd printed off

from the internet. (Yes, I know I'm very lucky to have him for a

doctor!)

I take it around 9:00pm every night, unless I forget and then I take

it when I go to bed later. Although it's not a " wow! " type of effect,

I do like it and plan to continue. I should mention that I don't have

fibromyalgia and it's associated pain, so pain control isn't an issue

for me. In my case, it just seems to relax me and help my brain stop

racing around. It makes it easier for me to let go of the day and lie

down to go to sleep.

Best wishes,

Marcia on

in Salem, Massachusetts

On Jan 7, 2011, at 9:41 PM, just_me3 wrote:

> Hi,

>

> I'm wondering if anyone who has tried or is currently using LDN

> would be willing to offer an update on their experience?

>

> Also, I'd sure appreciate it if you would list your preferred

> websites for LDN ... an awful lot have popped up since I last looked

> at it as a possible option.

>

> TIA,

>

> Liz

>

January 12, 2011

Hi Marcia,

Thanks for your input!

I'm lucky also - one of my doctor's wrote me an Rx yesterday. I opted to have

him write for the 50mg Naltrexone tabs and I will mix myself. The tabs are

generic by Barr Pharmaceuticals; I hope I don't have trouble with the fillers.

I will take my first dose tonight ...

I hope you continue to enjoy benefits from the LDN,

Liz

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

From: Marcia on

Hello Liz,

I've been taking LDN for... um, I think about 5 months now. My regular

doctor wrote an Rx for me after I showed him some info I'd printed off

from the internet. (Yes, I know I'm very lucky to have him for a

doctor!)

I take it around 9:00pm every night, unless I forget and then I take

it when I go to bed later. Although it's not a " wow! " type of effect,

I do like it and plan to continue. I should mention that I don't have

fibromyalgia and it's associated pain, so pain control isn't an issue

for me. In my case, it just seems to relax me and help my brain stop

racing around. It makes it easier for me to let go of the day and lie

down to go to sleep.

Best wishes,

Marcia on

in Salem, Massachusetts

January 13, 2011

Hi Liz,

Thanks a lot for your comments.

More below.

On 2011-01-11, just_me3 <just_me3@...> wrote:

> I've read that bad reactions can be due to gluten and/or casein intolerance.

> Were you on a gluten/casein free diet during (and for a short while prior

> at least) your LDN trial? Or do you have other ideas as to what caused your

> bad reaction?

I never heard about this. I have not tried serious GFCF and don't

know much about it but had and have a very limited 4-day rotation

diet. I was possibly on gluten free, or relatively so, certainly no

wheat, by accident; no dairy except possibly rare yogurt, possibly

butter no more than every 4 days, and sheep feta every 4 days.

I think it was the LDN, but I don't know if there were other factors.

I don't know if they mistakenly gave me full strength or something

(seems unlikely). The nausea went back to normal low levels after I

stopped the LDN.

>

> I also read that LDN can exacerbate yeast problems.

Hmm, thanks for confirming. I did hear about it but nothing else

about it. If so, it can't be good for me.

Here are some things about mold and worse days for me, in case it fits

a pattern. Extracted from something longer.

=== MOLD ===

I then lived in a place with serious levels of mold

including black mold (about a square meter of a wall in a

nearby room). 6 or so species cultured strongly in agar

petri dishes. I got significantly worse then also and never

recovered. Lay in bed most of the time. Blood testing

(radioimmunoassay) showed literally off-the-scale high

titers[fn:titers] of antibodies for the same molds in the

petri dish and others. Had to get rid of all but a few

possessions and move to desert.

Since then, constant eye pain and watering, rhinitis, sinus

issues, lung issues, nasal polyps, worse overall

health, a frequent pronounced half-asleep half-awake stupor

in which nothing can be done (qualitatively different from

the usual similar state every day; the same state also

occurs with vinyl fumes), can feel it in my esopohagus, hot

red corners of mouth and fingernails, itching in certain

other places when bad, and profound exhaustion, all worse

than before and strongly related to mold.

Mold is definitely an important factor.

Been on oral Lamisil[fn::Generic terbinafine does not seem

to work as well, almost as if it has no active ingredient.

Tastes different also.] antifungal tablets 250mg/d,

sometimes 2x/d, since 1998. Concerned about liver. Been on

Nystatin tablets for years, and sometimes caprylic acid.

Mold-free 4-day rotation diet (but still have rice and

quinoa). Probiotics (Primadophilus).

Despite those measures, I still get constant coughs and

other mold symptoms. Also, even if I were ambulatory, I

couldn't be in most buildings, near papers, etc. due to

mold.

=== WORSE DAYS ===

Worse days: bad sinuses usually accompany a worse day. This

is almost always with worse mold issues (I can feel it in my

throat, nose, etc. more, cough more, etc.). On those days,

nausea, fatigue, malaise, stimulation sensitivity, and IBS

often also get worse. Lungs often get worse. Eyes always

get worse. Hangover-like feeling gets worse (I don't

drink).

Worse days happen every few days and some are worse than

others. They happen spontaneously and also following bad

sleep, exertion, mold / dust / paper exposure, humid weather

(mold), or other stressors.

Exertion or bad sleep essentially always causes worse

sinuses and mold issues the next day, starting in the

morning, in addition to other issues like pain, malaise,

fatigue, etc. for days or weeks.

It appears that mold grows when I have any sort of stress to

the body. That should be useful for diagnosis.

This raises questions. Why can't I shake mold? Is it the

immune system? Which parts? Do I possibly have a fungal

mass in my sinuses? (CT and MRI and X-rays all showed

clogged sinuses around 1999.)

===

Thanks,

--

The Kafka Pandemic: http://thekafkapandemic.blogspot.com

I support WPI: http://www.wpinstitute.org/xmrv/index.html -- {Moderator:

removed solicitation}

===

I want to see the original (pre-hold) Lo et al. 2010 NIH/FDA/Harvard MLV paper.

January 13, 2011

Hi ,

It does sound like they gave you the wrong dose. When you say 0.5, does that

mean 1/2 a tablet, or 1/2 ml of the solution.

It also sounds like alcohol or narcotic reaction with the LDN. As you know,

people trying to get off narcotics or alcohol use the Naltrexone to curb their

cravings and to force an undesirable event on them which helps them to stay away

from these substances.

I can drink just a tiny bit of alcohol - any more than that causes a splitting

headache and a tiny bit of nausea.

Hope you can figure this out.

Sugar, gluten and casein as well as alcohol and any of the narcotics are all

things that keep the naltrexone from working and can cause some side effects. I

have not noticed an increase in yeast but we are all different.

Marti

> > I'm wondering if anyone who has tried or is currently using LDN would be

> > willing to offer an update on their experience?

>

> Just in case you missed it if I posted it before:

>

> I tried very low dose naltrexone (LDN / VLDN) for a month,

> but had severe nausea, vomiting that was delayed for many

> hours, delayed gastric emptying, sweating, diarrhea, and

> worse IBS. This was at only 0.5 per day every other day and

> 1.25mg + Benadryl (to try to help prevent some of the nausea

> and for better sleep and for allergies) on the other days.

>

> The severe nausea and other symptoms happened 3 times during

> the month, with more moderate nausea the rest of the time.

> Still recovering from that. It is as if they gave me full

> dose instead. It was crushed tablets from a compounding

> pharmacy. Also bad sinuses, lung congestion, worse mold

> symptoms. I have heard that LDN can make candida issues

> worse. But it was raining also.

>

> --

> The Kafka Pandemic: http://thekafkapandemic.blogspot.com

> I support WPI: http://www.wpinstitute.org/xmrv/index.html --{Moderator:

removed solicitation}

> I want to see the original (pre-hold) Lo et al. 2010 NIH/FDA/Harvard MLV

paper.

>

January 13, 2011

Hi ,

I wish I had a lot of insights for you, but I'm new to LDN. And though I've had

CFS/FM/ME for over 20 years, I'm just muddling along trying to find my way.

As for LDN, I found a lot of information at:

http://ldn.proboards.com/index.cgi and http://forum.ldnresearchtrust.org/ , in

addition of course to http://www.low dose naltrexone.org/. Maybe you might find

some insights at one of these?

I don't know a lot about mold, but I did find 2 sites that were LDN/mold

relevent that you might want to look at:

http://www.facebook.com/topic.php?uid=180166718334 & topic=12145

http://ldn.proboards.com/index.cgi?board=forum & action=print & thread=1331

As far as yeast is concerned, I'm sure you know there are a lot of sites about

it on the internet, and there is even a candidiasis group that is pretty

good.

LDN might not be something you want to pursue until you get some other issues a

bit more under control, but perhaps you can revisit it down the road?

I wish you the best of luck,

Liz

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

From: Wales