Low dose Naltrexone

[Diva55]

LDN was like a miracle drug for me for about a month or 6 weeks.
After about a month, tho, my infections became worse (thrush, bladder, viruses) and I am still having problems with infections 2 years later, especially the thrush.

I started suspecting I had a strep infection in my mouth, and sure enough, a round of Keflex got rid of a lot of painful lesions in my mouth.

If I can get the thrush under control, I am going to try the LDN again.

Hi Vdt33
What a shame that you had to stop is after wonderful improvements.

I wrote this in a post earlier concerning candida / thrush (as I have developed it):

Q: Dr. JM or anyone- Does LDN cause candida?

A: LDN has been noted to aggravate yeast infections and other latent pathogens, viruses, etc. as the immune system is making early adjustments. It is good to have natural yeast remedies on board when LDN is started (grapefruit seed extract, Candex, lauricidin, hi-potency probiotics, etc) to help offset this possibility. (And of course a good dietary regime that does not encourage gut inflammation which is usually the predecessor to pathogen invasion).

Dr. Jaquelyn McCandless

With the lesions in your mouth - did you get them under the tongue? It's just I got them and wondered if they might be connected with LDN?

I hope you manage to get thrush under control - it seems to have attacked my body in a huge way when I haven't had an attack this bad for many years!

Best wishes
Diva

 

[Diva55]

My take:
LDN + new-bug response = :victory:

I am so pleased with my new immune system--it is actually cleaning up the terrain--slowly--but it's chasing the bad guys.

Sushi

Hi Sushi
Love the image of the LDN good guys pushing the bad guys out of the system! Shows my weird dreams are now affecting my imagination! Isn't it strange that we are cheering the onset of new bugs / viruses!

 

[Diva55]

Vitamin D & LDN

Well I went a-googling and couldn't come up with anything concrete on why Vitamin D is important with LDN.

Seems Vitamin D is an immune modulator as is LDN so they appear to work in synergy.

However the advice seems to be that testing is needed to acheive the optimal personal dosage of Vit D.

I'm hoping that the Glasgow LDN conference will distribute notes / videos afterwards as they have a Vitamin D agenda point.

So I'll try Vitamin D in increased doses as my immune system needs all the help it can get.

 

[valia]

Hi Valia
3ml might be too big a dose to start with but as you can read some do ok on starting on higher doses (the max being 4.5ml). I started on 1.5ml but that was way too high & went back to 0.1ml and am now on just 0.5ml.

If you get any reactions you can't deal with just drop back for a while. Apparently you're not supposed to stop it completely as the body needs to build up with it so even a tiny dose a day like 0.1ml will keep it ticking over.

Yes the dream part is very strange but I take it as a good sign!

Best of luck with it and keep us up to date on your progress.
Diva

Thanks Diva,

I don't know what form it will come in, perhaps liquid as doc said to keep it in fridge and my 3 month prescription has been split into 3 monthly deliveries, so I should be able to reduce dose if I have problems. I will let you know how I get on.

 

[Sushi]

Well I went a-googling and couldn't come up with anything concrete on why Vitamin D is important with LDN.

Seems Vitamin D is an immune modulator as is LDN so they appear to work in synergy.

Mercola wrote about Vit D and immunity today: "A new study has confirmed that vitamin D plays an important role in activating your immune defenses against infectious diseases like the flu." http://articles.mercola.com/sites/a.../vitamin-d-deficiency-is-why-you-get-flu.aspx

Sushi

 

[*GG*]

I am taking 8,000 IUs of Vitamin D3 with 4.5mg of LDN. I had my blood tested for Vitamin D when I was on Vitamin D dose of 4,000IUs in October of 2009 with my physical and the value was under 40. So I wanted a higher level. I had another blood test a few weeks ago, but will not see the Dr for another few weeks, so must be OK. Otherwise they would have called me. Interested in seeing what my cortisol levels are doing after about 1 year since my last test.

I was wondering if anyone had come across any articles on why Vitamin D is important when taking LDN. I've skimmed a few LDN forums and people talk about taking Vitamin D but not why.

The Scottish Conference in April has an agenda item about Vitamin D & LDN but no details on this.

I only take a low dose (400iu) of Vit D when I remember but wondered if I should look at getting a higher dose of this.

If people are taking Vitamin D - what doses are you using?

Many thanks

p.s. I've now moved my dose of LDN from 0.1ml to 0.25ml!

 

[Diva55]

Hi Sushi
Thanks for the link - very interesting. Makes the link / synergy between Vitamin D & LDN more concrete!

Mercola wrote about Vit D and immunity today: "A new study has confirmed that vitamin D plays an important role in activating your immune defenses against infectious diseases like the flu." http://articles.mercola.com/sites/a.../vitamin-d-deficiency-is-why-you-get-flu.aspx

Sushi

 

[Diva55]

Hi
That's a lot of vitamin D but as your bloods show you need it. It's difficult for me with no testing for Vitamin D what dose I should try - maybe 1,000iu day. I don't know if supplementing too high a level is bad if you may not need it.

How are you getting on with LDN? I think you've been using it for 6 months? (just a guess from previous posts I've seen).

Hope you're doing well
Diva

I am taking 8,000 IUs of Vitamin D3 with 4.5mg of LDN. I had my blood tested for Vitamin D when I was on Vitamin D dose of 4,000IUs in October of 2009 with my physical and the value was under 40. So I wanted a higher level. I had another blood test a few weeks ago, but will not see the Dr for another few weeks, so must be OK. Otherwise they would have called me. Interested in seeing what my cortisol levels are doing after about 1 year since my last test.

 

[oerganix]

I have read studies that show too much vitamin D can cause reabsorption of bone...that is, bone loss or osteoporosis.

As for Dr Mercola, I've been surfing his site for a long time and I don't trust him or his "studies". Too many of them have come from the supplement manufacturers and been "rewritten" to look like something new and true. Mercola is nutty, IMO. He says microwave ovens poison your food, for example, and other nutty ideas. He's a great marketer. He sells cookware, grass-fed ostrich and a whole lot of other stuff that looks to me like it is marketed to people with more dollars than sense. Most of his "articles" are fear mongering, designed to get the reader to buy stuff from his site. Note the sensational language he uses.

 

[Diva55]

Hi Oerganix
Many thanks for your opinion on Mercola - I don't keep up with who's good & who's bad on the doctor front. It's so easy to get misled when finding articles on the internet. I get google fever after a while! I tend to reply on message boards with help from "real" people going through the same things as me.

On balance I still think I should increase my vitamin D for a short period to see if it helps but I won't raise it to huge levels or for a long period.

I'll be interested to see what the Glasgow LDN conference says about Vit D & LDN - why they recommend it & what doses will be interesting.

Many thanks to all for their opinions on Vitamin D

Diva

I have read studies that show too much vitamin D can cause reabsorption of bone...that is, bone loss or osteoporosis.

As for Dr Mercola, I've been surfing his site for a long time and I don't trust him or his "studies". Too many of them have come from the supplement manufacturers and been "rewritten" to look like something new and true. Mercola is nutty, IMO. He says microwave ovens poison your food, for example, and other nutty ideas. He's a great marketer. He sells cookware, grass-fed ostrich and a whole lot of other stuff that looks to me like it is marketed to people with more dollars than sense. Most of his "articles" are fear mongering, designed to get the reader to buy stuff from his site. Note the sensational language he uses.

 

[Diva55]

Tamrakat's story

Tamrakat replied to my LDN & help with IBS post (In the Gut section) .

Her story is very encouraging for us on this thread so I thought I would copy it here. I've added the bold to a couple of sections.

It's also very interesting about the buildup of LDN which I believe someone on this thread had - sorry I can't remember your name offhand.

I've asked Tamrakat to join this thread.

Originally Posted by tamrakat
I've used Low Dose Naltrexone for six months now.

I was in the Stanford Phase II LDN for Fibromyalgia Clinical Trial last year.

It does help a lot. I was on 4.5 mg and am now going down to 3 mg. I felt great for 3 months and it took about a month for me to start feeling good. I felt about 80% recovered.

The last two months it hasn't been working as well and Dr. Younger at Stanford suggested I go down on my dosage as sometimes there is a buildup of naltrexone which causes too much of an opiate blockade preventing it from working correctly on the opiate receptors.

I'd recommend LDN to anyone who's suffering with these diseases. I've been dx with CFS, fibromyalgia, & IBS. LDN is the most effective thing I've tried since I got really sick 3 years ago.

 

[jeffrez]

I've been on LDN for about 4-5 months, at 3, 4.5, and now 1.5mg. I haven't noticed anything at all, no side effects, no improvements, no anything. I'm starting to think my endorphin system must not be very functional. Someone on the LDN list said it might take even 6 months to see any effects, but that seems to me like a long time for something to work. I had liver enzyme tests and those haven't been elevated, so I guess there's no reason not to finish this last batch for a couple more months and see if it will kick in. But for me the results have been disappointing. The doc who prescribed for me said he has seen it work in some people, and not work in others. So maybe it works for some people, but it seems that there are others it just doesn't help.

 

[Diva55]

Hi Mr. Kite
I'm sorry to hear LDN has not been working for you.
I've read too that playing round with your dosage may help but obviously not with you.
I also read that it can take up to 6 months (or maybe more?) to kick in so I guess if you're not getting any adverse reactions it's worth carrying on.

Yes the sad news is that it does not work for everyone but we keep our fingers crossed for any treatments that we pursue. I've tried lots of things that have helped some but haven't helped me - we are all so different (and similar) in many ways!

I hope you are a late developer :sleepy:and it suddenly catches up!. Keep us up to date.
Best wishes
Diva

 

[leaves]

I just started with LDN and I have the feeling that I breathe somewhat easier. Did anyone else notice this?

 

[Diva55]

Hi Leaves
I've not noticed this but very interesting. However I'm still on a very small dose (0.5ml) so a way to go before I'm up to level most people take.

In the list of many things helped by LDN one of them is Lung Cancer - I wonder if there's a relation to helping the respiratory system in general. Just thinking outloud.

What dosage are you taking?

Please keep us up to date.

Did you see my post of the LDN pharmacies - I know it's too late as you've already ordered!

Best wishes
Diva

I just started with LDN and I have the feeling that I breathe somewhat easier. Did anyone else notice this?

 

[Cloud]

I wonder how well LDN will be tolerated by xmrv+ folks? Somewhere I read that certain types of Immune support are a bad idea with xmrv. I'm thinking Dr Cheney or Mikovitz.....Need to find it. I see people either raving about how well LDN works, or the opposite and they got very ill.....no middle ground. I wonder if it has to do with xmrv status? Ruminating again, lol. I have never been able to take Immune stimulants. Tried LDN over a decade ago, but was much too sick to discern a difference. May be different now. Happy it is working for some....That's always good to hear.

 

[leaves]

Well I'm xmrv+ and so far so good. I'm on 2 mg

 

[Cloud]

Well I'm xmrv+ and so far so good. I'm on 2 mg

That's great Leaves! How long have you been on LDN? My GP is always trying to give it to me....maybe I need to give it a go. I look forward to a fine tuned tolerable treatment regimine that will suppress xmrv, balance the immune system, and cool the cytokine jets.

 

[Jenny]

An update from me -

Upped the dose to 1mg nearly a week ago. I don't have the euphoric feelings in the morning that I had at the start on 1.5 mg, but I sleep well, and the nausea and lack of appetite have disappeared.

I've also been feeling better generally - can spend more time out of bed, fluey feelings have lessened and pain is better. I wouldn't necessarily put this down to the LDN as in in past I've always come out of severe relapses after 4 - 6 months anyway and I crashed 6 months ago. I've also been doing quite a lot of other things - started acetyl L carnitine, sodium bicarb, holy basil, krill oil and pancreatic enzymes.

But at least I'm tolerating it, and if all continues OK will up the dose again in a few days.

Jenny

 

[oerganix]

I wonder how well LDN will be tolerated by xmrv+ folks? Somewhere I read that certain types of Immune support are a bad idea with xmrv. I'm thinking Dr Cheney or Mikovitz.....Need to find it. I see people either raving about how well LDN works, or the opposite and they got very ill.....no middle ground. I wonder if it has to do with xmrv status? Ruminating again, lol. I have never been able to take Immune stimulants. Tried LDN over a decade ago, but was much too sick to discern a difference. May be different now. Happy it is working for some....That's always good to hear.

Maybe it's nitpicking, but those who are researching LDN say it is an immune modulator, not a stimulant per se. They say that it can up-regulate or down-regulate the immune system, depending on what is lacking. If those who think MS is caused by an up-regulated immune system, ie, is an autoimmune disease are right, it seems to be working by quieting the immune system. I mention MS because that is where I have heard the most success stories.

Having said that, I'm thinking that maybe for those who start LDN and get an up-regulated immune response, maybe the response is too strong to bear. May be that the most sensitive among us need to start low, go slow, and maybe skip days or take breaks. Of course, LDN may also just not be for everyone.

Leaves, good to hear it's going well for you.

I've been on 4.5mg but I've dropped back to around 3, as I've had a cold, cough and sore throat like I haven't had in years. I've decided to just take it easy instead of pushing for fast changes. About once a week I just skip a dose. I've gotten in the habit of eating several tablespoons of homemade yogurt right after taking the LDN and that soothes the stomach irritation that seems to come and go with LDN.

For several days I had dizziness, like sea sickness, unusual for me. The left side only headache came back with the migraine-like visuals but little pain. Those have passed and I feel good today.

My biggest improvement is in sleep. I'm sleeping well without meds for the first time in decades. That has improved my sense of well being and my mood as well. I'm also feeling more coordinated, less clumsy and disconnected from my body.

This is my 7th week on LDN.