RE: Re: Low Dose Naltrexone? - Deanna

[Guest guest]

, Sally, et al,

I had a problem almost identical to ’s. I’ve had Crohn’s

for almost 30 years, as I’ve said. I’m very drug sensitive and have had bad

reactions – usually bad reactions plus no effect on the Crohn’s – to various Crohn’s

drugs. And I’ve refused Remicade/Humira/Cimzia because I tend to get infections/viruses

easily, and some people who couldn’t fight such infections while on those drugs

died during their test trials. (You have to read the fine print. I’m not trying

to scare anyone who’s on those drugs; they work well for some people; I just

didn’t want to take the chance my body couldn’t fight any infection I might

contract.)

While the SCD is helpful to me, I’m also (like Deanna) a person

for whom it’s not having the kind of amazing effect it has for some of you. I

knew I would need something more, also given my other auto-immune problems. I saw

my gastroenterologist on Monday and talked to him about LND. He didn’t know

about it, but listened to me, and looked up info on his computer right then and

there. And prescribed it for me (a real answer to prayer)!

So I’ve taken it for only two nights. But it has already

positively affected me. However, if you react like I have so far, you’ll have a

hard time if you need to get up in the morning to go to a job. These last two

mornings I’ve slept until 10:45 a.m. I’ve taken it at 9:30 p.m., and then was

in bed by 10:00 or 10:15. By that time I had started to feel very tired and my

limbs felt heavy (some say that happens particularly in people who tend to have

low blood pressure, as I do). The first night I slept, would wake up, slept,

would wake up, then was awake from 5 a.m to 8:00 am. Then I slept for a few

hours after that.

Last night, I already slept much better. I had one short stint

of being awake (had to go to the bathroom), though after finally waking up in late

morning I realized that during my sleep there seemed to be millions of things

going on in my head all night long (not vivid dreams – I normally have vivid

dreams; just jumbled stuff going on, which makes you feel tired when you wake

up).

When I woke up these last two mornings I have felt quite tired,

and achy, but also more relaxed, paradoxically. (I have arthritis and a muscle

condition that causes achiness too.) But once I forced myself to get up, the

aches and fatigue dissipated. And I already have a bit more energy. Most interesting,

the muscle condition – constant lactic acid in my muscles – has already

improved. The “humming” in my muscles that I almost always have is virtually

gone. There’s no effect on the pain in my side (the Crohn’s pain), but I certainly

wouldn’t expect that after only two nights. There’s just tons of evidence by

now – and thousands of people to vouch for it -- that LDN works well for Crohn’s

and UC when nothing else does.

Re: LDN not working well. For a small percentage it apparently

doesn’t. But I also read, I think on the www.ldninfo.org

site, that LDN works best for those who already have been/are on a very

low-carb diet, such as SCD. It can cause some yeast/bad bacteria problems in

people eating high carbs.

, I would urge you not to give up with your doctors

until you can get LDN. It can also be gotten without prescription (see the ldn

website or ask me about that offlist), but it’s better to try to get your

doctor to prescribe it. It has to come from a compounding pharmacy – it needs

to be made up for you personally, because the normal pills (used for drug and

alcohol addiction) are 50 mg. each, and for Crohn’s/US the top dose is 4.5 mg,

thus “low-dose naltrexone.

Best wishes to you.

n

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Deanna

Sent: Thursday, March 12, 2009 1:29 PM

To: BTVC-SCD

Subject: Re: Low Dose Naltrexone? - Deanna

Hi Sally

The only supplements I take are the Freeda Multi and B Complex (1 per day)

calcium, Carlson's cod liver oil and a legal Vitamin D (3000 iu per day)

I've heard that LDN takes sometimes months to regulate and help some people -

hang in there. What dosage is he taking? I started out at 1.5 mg first week,

then 2, then 2.5, now I'm at 3 mg and will eventually try 4.5mg which for

people with IBD is the optimal dose I've heard.

Deanna

UC 5 years

LDN 17 days

SCD 14 months

>

> Deanna,

>

> Glad to hear you are doing so well on LDN.

>

> My teenage son started on LDN on 2/13 for colitis after 8 months of

> Remicade did nothing for him (last infusion was 12/15/08). He has seen

> some improvement, but not as dramatic as yours. Kind of two steps

> forward, one step back sometimes.

> He has had the added complication of recurring Cdiff infections and is

> on a tapering course of Vancomycin. I am wondering if there is a yeast

> issue from being on the Vanco since mid-December.

>

> Do you take any probiotics or supplements along with the LDN?

> I am curious because my son also started some new supplements shortly

> after the LDN and when he doesn't have a good day, I wonder if the LDN

> isn't working as it should or if one of the supplements isn't agreeing

> with him.

>

> Thanks

> Sally

>

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