Adverse reactions to LDN Anyone?

[Guest guest]

Hi,

I have CFS, MCS and am extremely sensitive to meds and many foods.

I tried LDN recently but had such severe reactions to it that I had

to stop. Persisting for 2 weeks and then reducing the low dose by

half did not help enough for me to endure the treatment. My

reactions included, asthma (hadn't had any asthma for about a year

before this), sore flaking skin, dramatically increased fatigue and

balance problems, worsened headache and my cognitive problems were

much worse. This surprised me because after reading everyone's

testimonials, I expected to feel better. I have since heard of only

one other person who had almost identical symptoms from LDN, but

thought it worth posting here, in an effort to find out more.

Have any of you with experience of LDN had such responses? Any

explanation why I would have responded this way?

I am in Australia, where so far, the health professionals I consult

are totally ignorant of LDN and are highly skeptical and critical of

the website. So they are not a lot of help to me in answering my

questions. I thought perhaps my reaction to LDN could be a valuable

clue which could lead to more successful treatment options.

Any advice or thoughts on this would be wholeheartedly appreciated.

Many thanks,

Jan.

[Guest guest]

--- In low dose naltrexone , " atranceformer " <atranceformer@y...>

wrote:

>

> Hi,

>

> I have CFS, MCS and am extremely sensitive to meds and many foods.

> I tried LDN recently but had such severe reactions to it that I had

> to stop. Persisting for 2 weeks and then reducing the low dose by

> half did not help enough for me to endure the treatment. My

> reactions included, asthma (hadn't had any asthma for about a year

> before this), sore flaking skin, dramatically increased fatigue and

> balance problems, worsened headache and my cognitive problems were

> much worse. This surprised me because after reading everyone's

> testimonials, I expected to feel better. I have since heard of only

> one other person who had almost identical symptoms from LDN, but

> thought it worth posting here, in an effort to find out more.

>

> Have any of you with experience of LDN had such responses? Any

> explanation why I would have responded this way?

>

> I am in Australia, where so far, the health professionals I consult

> are totally ignorant of LDN and are highly skeptical and critical of

> the website. So they are not a lot of help to me in answering my

> questions. I thought perhaps my reaction to LDN could be a valuable

> clue which could lead to more successful treatment options.

>

> Any advice or thoughts on this would be wholeheartedly appreciated.

>

> Many thanks,

> Jan.

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

Jan if you have a fax machine or access to one, your case would be one that I

believe only Dr. Bihari could answer. Go to the LDN website and click on

Contact Us and there is a fax number listed for Dr. Bihari.

[Guest guest]

Hi Marcie,

Thanks for your reply. CFS is Chronic Fatigue Syndrome also known

as ME (myalgic encephomyelitis) or (Neuro-immune dysfunction

Syndrome). Similar to FM Fibromyalgia.

MCS is Multiple Chemical Sensitivity which often develops with CFS.

Stats show about 60% of CFS sufferers report MCS. Allergies are easy

to diagnose because the reaction is so immediate, but intolerances

are very complicated to diagnose because it can take up to 5 days

for some people to have the reaction appear as symptoms. Therefore I

speculate the numbers are actually higher because many with CFS

don't realise they have food and chemical intolerances. I was

bedbound for the first year with CFS till I realised that everyday

foods, dairy, wheat, soy, and amines which are in just about

everything that is tasty or fermented were causing debilitating

symptoms. Eliminating them for 2 weeks led to me seeing a vast

improvement to where I could even go out for an hour or so. My

migraines disappeared and I stopped having fits. A virus has caused

a relapse to where I'm pretty much housebound again, but thankfully

able to potter about. Like many of us with CFS, I catch every virus

going, so I was very excited to read how people were trying LDN and

finding they hadn't caught a virus since. I really thought it would

help.

I had no asthma for about a year before trying the LDN. No skin

flakiness or soreness present, but a history of this kind of

reaction to allergens. I had a headache and some brain fog plus mild

balance problems and some cognitive deficits as part of the CFS

symptoms. These symptoms all were much worse on LDN and took 5-7

days to diminish after discontinuing the treatment. In fact the

asthma has lessened but still has not gone yet. I have a history of

Orthostatic intolerance too (comes with the CFS) - Blood pressure

which drops dramatically upon standing, causing fainting and fits.

Thankfully my BP did not appear to be affected by the LDN.

Kind regards,

Jan.

> Jan,

>

> I am not sure what CFS & MCS are, but you are right that if we

could figure

> out why you reacted this way to LDN, it might help many people.

I, too, would

> have thought that you would have felt better. My question is

this; did you

> have none of these symptoms before starting LDN?

>

> Best of luck to you!

>

> Marcie

>

>

> In a message dated 10/18/2004 8:44:51 PM Central Daylight Time,

> atranceformer@y... writes:

>

>

> > I have CFS, MCS and am extremely sensitive to meds and many

foods.

> > I tried LDN recently but had such severe reactions to it that I

had

> > to stop. Persisting for 2 weeks and then reducing the low dose

by

> > half did not help enough for me to endure the treatment. My

> > reactions included, asthma (hadn't had any asthma for about a

year

> > before this), sore flaking skin, dramatically increased fatigue

and

> > balance problems, worsened headache and my cognitive problems

were

> > much worse. This surprised me because after reading everyone's

> > testimonials, I expected to feel better. I have since heard of

only

> > one other person who had almost identical symptoms from LDN, but

> > thought it worth posting here, in an effort to find out more.

> >

> >

[Guest guest]

Thanks ,

I think I can send a fax at the post office. I'll check it out.

Would Dr. Bihari respond to me via email do you think? I'll get

organised and type something up. If I get a response, I'll post it

here if that is permitted.

Warm regards,

Jan

> >

> > Hi,

> >

> > I have CFS, MCS and am extremely sensitive to meds and many

foods.

> > I tried LDN recently but had such severe reactions to it that I

had

> > to stop. Persisting for 2 weeks and then reducing the low dose

by

> > half did not help enough for me to endure the treatment. My

> > reactions included, asthma (hadn't had any asthma for about a

year

> > before this), sore flaking skin, dramatically increased fatigue

and

> > balance problems, worsened headache and my cognitive problems

were

> > much worse. This surprised me because after reading everyone's

> > testimonials, I expected to feel better. I have since heard of

only

> > one other person who had almost identical symptoms from LDN, but

> > thought it worth posting here, in an effort to find out more.

> >

> > Have any of you with experience of LDN had such responses? Any

> > explanation why I would have responded this way?

> >

> > I am in Australia, where so far, the health professionals I

consult

> > are totally ignorant of LDN and are highly skeptical and

critical of

> > the website. So they are not a lot of help to me in answering my

> > questions. I thought perhaps my reaction to LDN could be a

valuable

> > clue which could lead to more successful treatment options.

> >

> > Any advice or thoughts on this would be wholeheartedly

appreciated.

> >

> > Many thanks,

> > Jan.

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

>

> Jan if you have a fax machine or access to one, your case would be

one that I believe only Dr. Bihari could answer. Go to the LDN

website and click on Contact Us and there is a fax number listed for

Dr. Bihari.

>

>

[Guest guest]

I read somewhere, heaven knows where with all the web wandering I do, that the material the capsules are made with contains? There you go, I remember it was one of the things I try to avoid but which?

So, maybe it wasn't the LDN but the capsules themselves that you reacted to?

Just a thought, or actually just part of a thought.

JT

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

From: atranceformer

low dose naltrexone

Sent: Monday, October 18, 2004 9:59 PM

Subject: [low dose naltrexone] Re: Adverse reactions to LDN Anyone?

Hi Marcie,Thanks for your reply. CFS is Chronic Fatigue Syndrome also known as ME (myalgic encephomyelitis) or (Neuro-immune dysfunction Syndrome). Similar to FM Fibromyalgia.MCS is Multiple Chemical Sensitivity which often develops with CFS. Stats show about 60% of CFS sufferers report MCS. Allergies are easy to diagnose because the reaction is so immediate, but intolerances are very complicated to diagnose because it can take up to 5 days for some people to have the reaction appear as symptoms. Therefore I speculate the numbers are actually higher because many with CFS don't realise they have food and chemical intolerances. I was bedbound for the first year with CFS till I realised that everyday foods, dairy, wheat, soy, and amines which are in just about everything that is tasty or fermented were causing debilitating symptoms. Eliminating them for 2 weeks led to me seeing a vast improvement to where I could even go out for an hour or so. My migraines disappeared and I stopped having fits. A virus has caused a relapse to where I'm pretty much housebound again, but thankfully able to potter about. Like many of us with CFS, I catch every virus going, so I was very excited to read how people were trying LDN and finding they hadn't caught a virus since. I really thought it would help.I had no asthma for about a year before trying the LDN. No skin flakiness or soreness present, but a history of this kind of reaction to allergens. I had a headache and some brain fog plus mild balance problems and some cognitive deficits as part of the CFS symptoms. These symptoms all were much worse on LDN and took 5-7 days to diminish after discontinuing the treatment. In fact the asthma has lessened but still has not gone yet. I have a history of Orthostatic intolerance too (comes with the CFS) - Blood pressure which drops dramatically upon standing, causing fainting and fits. Thankfully my BP did not appear to be affected by the LDN. Kind regards,Jan.> Jan,> > I am not sure what CFS & MCS are, but you are right that if we could figure > out why you reacted this way to LDN, it might help many people. I, too, would > have thought that you would have felt better. My question is this; did you > have none of these symptoms before starting LDN?> > Best of luck to you!> > Marcie> > > In a message dated 10/18/2004 8:44:51 PM Central Daylight Time, > atranceformer@y... writes:> > > > I have CFS, MCS and am extremely sensitive to meds and many foods. > > I tried LDN recently but had such severe reactions to it that I had > > to stop. Persisting for 2 weeks and then reducing the low dose by > > half did not help enough for me to endure the treatment. My > > reactions included, asthma (hadn't had any asthma for about a year > > before this), sore flaking skin, dramatically increased fatigue and > > balance problems, worsened headache and my cognitive problems were > > much worse. This surprised me because after reading everyone's > > testimonials, I expected to feel better. I have since heard of only > > one other person who had almost identical symptoms from LDN, but > > thought it worth posting here, in an effort to find out more. > > > >

[Guest guest]

In a message dated 10/19/2004 1:00:27 AM Eastern Daylight Time, atranceformer@... writes:

MCS is Multiple Chemical Sensitivity which often develops with CFS.

Jan:

If you were taking LDN in capsule form, I wonder if your allergies could be attributed to whatever the capsule is made from? Do you take other supps in capsule form and do you have to be careful with what those caps are made of?

Arlene

[Guest guest]

In a message dated 10/19/2004 1:15:36 AM Eastern Daylight Time, jatrac1@... writes:

I read somewhere, heaven knows where with all the web wandering I do, that the material the capsules are made with contains? There you go, I remember it was one of the things I try to avoid but which?

So, maybe it wasn't the LDN but the capsules themselves that you reacted to?

JT

I just posted about the same query, then I read this. Great minds (or those on LDN) think alike!!!

Arlene

[Guest guest]

I remember a few years ago, a doctor suggested that if I was going to take the supplements that I was taking that I should pour them out of the capsules. I didn't do it though! One that I was taking was Valerian, and it smelled bad enough! I could only imagine the taste! Apparently, that doc didn't think that the gelatin capsules were very good for us!

Marcie

In a message dated 10/19/2004 8:32:51 AM Central Daylight Time, arlizotte@... writes:

read somewhere, heaven knows where with all the web wandering I do, that the material the capsules are made with contains? There you go, I remember it was one of the things I try to avoid but which?

So, maybe it wasn't the LDN but the capsules themselves that you reacted to?

JT

[Guest guest]

Most capsules are made of gelatin, but there are capsules made from vegetable sources. I have both.

Wayne Loveland

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

From: arlizotte@...

low dose naltrexone

Sent: Tuesday, October 19, 2004 8:26 AM

Subject: Re: [low dose naltrexone] Re: Adverse reactions to LDN Anyone?

In a message dated 10/19/2004 1:15:36 AM Eastern Daylight Time, jatrac1@... writes:

I read somewhere, heaven knows where with all the web wandering I do, that the material the capsules are made with contains? There you go, I remember it was one of the things I try to avoid but which?

So, maybe it wasn't the LDN but the capsules themselves that you reacted to?

JT

I just posted about the same query, then I read this. Great minds (or those on LDN) think alike!!!

Arlene

[Guest guest]

--- In low dose naltrexone , " Bren " <TwisterAlley2@w...>

wrote:

>

Thanks for your thoughts . I could have been getting an

overdose. I am petite, and super-sensitive to meds. However, I did

end up with more than 16 pieces of the 50mg tab after cutting. I

eventually reduced the dose considerably to 1.5 mg and still suffered

very nasty symptoms. Going beyond that tiny dose just didn't seem

worthwhile. Clearly there was something in the tab that my body

couldn't cope with. I like the simplicity of your solution. I guess

we'll have to wait and see what the consensus of opinion is as to

whether this water based solution is viable - whether it keeps.

I really appreciate all the ideas and suggestions.

Jan

>

> Jan,

>

> I fear you are getting an overdose of Naltrexone the way you are

cutting up the 50mg tablet. Here are the instructions on how to

prepare the 50mg tablet in liquid form. You will also need to get

something to sweeten it so it won't be bitter. Wayne Loveland here on

this forum can help you with that.

>

> Liquid LDN (Easiest): Acquire some ml measuring equipment from the

baby section of a Drug Store and a small bottle with a screw-on cap.

Put 50ml of water (distilled is best) and one 50mg " ReVia " Naltrexone

tablet in the small bottle and let it dissolve with a little time and

shaking. Now each ml of water in that small bottle contains 1 mg of

Naltrexone. At bedtime shake the bottle, take a desired dose (no more

than 4.5ml), chase it down with some water and store the small bottle

in the refrigerator. Some people have reported splitting the tablet in

half and dissolving it in 25ml of water to assure freshness every week.

>

>

[Guest guest]

AT,

I, too, was using calcium carbonate as a filler and recently switched to Avicel just to be on the safe side. Wayne the pharmacist did say that if using CC as the filler, you may want to squeeze the capsule prior to taking it in order to loosen the contents. It sounds like a good idea in the case it is packed too tight. I have had no problems either way.

Were you having any depression issues before LDN? I can't imagine that, with the two conditions that you have, consuming much alcohol is an important thing. It can't help the CFS or IBS. It sounds as if you drink the alcohol in order to avoid agitation? The Indral seems to help, so at least you have that. And I'm sure that you know that LDN is recommended for 6 - 9 months in order to really know if it is helping you.

It's beginning to seem like many people want LDN to be a 'cure all'. Wouldn't that be great? My suggestion to you is to stick with it long enough to feel satisfied that it is either working or not. If not, and you choose to discontinue its use, then you're just one that it didn't work for. I hope the best for you!

Marcie

In a message dated 10/19/2004 10:01:00 PM Central Daylight Time, antaurus24478@... writes:

am not taking LDN for MS - i dont have MS. i am doing it for CFS and IBS. i am going through some of the bad effects and i am tempted to believe that it is because of LDN. especially i am having problems with mood swings and

am negativity. i am having my dose with calcium carbonate filler. i noticed one thing in particular and it is very

consistent. i have to tell u that the previous days

dose is able to block out the effects of alcohol the next day almost 24 hrs later. so there - there is a good chance that it is causing

the negative symptoms even at the meesely dose. i am going to try 1 mg for a while then c what

happens. any way a little indral helps me calm down and not

agitated. thanx. AT

[Guest guest]

That may be. Calcium carbonate is used in many calcium supplements that people buy often, and it is not the top of the line when it comes to meeting one's need for calcium.

Marcie

In a message dated 10/20/2004 11:18:46 AM Central Daylight Time, jolin@... writes:

It is my understanding that calcium carbonate binds with magnesium making it unavailable to the body and magnesium is important in dozens of biochemical functions.

RO

[Guest guest]

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

From: marciemjm@...

low dose naltrexone

Sent: Wednesday, October 20, 2004 6:18 AM

Subject: Re: [low dose naltrexone] Adverse reactions to LDN Anyone?

AT, I, too, was using calcium carbonate as a filler

It is my understanding that calcium carbonate binds with magnesium making it unavailable to the body and magnesium is important in dozens of biochemical functions.

RO