Low dose Naltrexone

[Diva55]

Hi Oerganix
Not nit picking at all - You're right to say LDN is an immune modulator which is very different from an immune stimulant. Maybe it should be called an immune corrector:Retro smile:

I keep wondering if we should have this thread moved to the correct section of Immune Modulators under Anti Virals etc.

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.
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

I'm with you on starting low & slow. I've now worked up to just 0.75ml after 3 weeks.
I did read that you should NOT take a break if you feel the adverse reactions are too much but reduce down to a very small dose. So you keep the body topped up. I can't remember who told me but if you stop it, it's like starting again. So maybe just take 0.1ml on the day you want to take a "break"?

May be that the most sensitive among us need to start low, go slow, and maybe skip days or take breaks.

I thought I had cleared the virus , hand rash & candida but it has reared up again so I feel for you on the cold etc. Hope you feel better soon.

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

.

Brilliant news about your sleep & the impact on your weel being & mood. My sleep improved initially but has got a bit odd recently - back to my weird sleep pattern but hoping for improvement after raising the dose in a while.

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

Good to hear you are getting some positive results & hope they continue for you
Best wishes
Diva

 

[Diva55]

Hi Jenny
I'm like you in that I'm not putting down any good reactions in general specifically to LDN as with FM / CFS I have mini remissions & my symptoms change on a daily if not hourly basis.

However any good changes to sleep are certainly down to LDN as sleep patterns have never changed previously. So that's how I'm currently monitoring any good effects from LDN.

My stomach cramps have mainly gone which is great but my appetite is pretty poor. As i said in the other post I've had a reactivation of the virus etc but I'll continue to take LDN whilst looking into other things to tackle the virus.

I'm with you on it being good just to be able to tolerate it for now. I'm monitoring it daily in a spreadsheet as my memory is shot.

Good to hear from you
Best wishes
Diva

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

 

[leaves]

blech

there is a pillow living in my head
Is that because of the ldn?
Im just on it for a few days, my cog stuff seems worse

 

[oerganix]

there is a pillow living in my head
Is that because of the ldn?
Im just on it for a few days, my cog stuff seems worse

Could be, but the opposite happened for me. With us, it's hard to know...
If that's the worst that's going on, hope you can bear it for a little longer and see if you get any benefits.
Good luck.

 

[Cloud]

I agree that it's not nitpicking. For myself, I get very discernibly different responses with immune stimulators vs (some) modulators. It's quite clear that ALL stimulator's will exacerbate my symptoms, so they are out.
True that a few of the "immune modulators" will alleviate symptoms, but not all of them....my experience is that some "so-called" modulators will also cause symptom exacerbation. For me it's not as simple as a product being labeled as one or the other. Of course I won't know about LDN without trying, but I think feedback was a good idea first. Great discussion.

 

[Diva55]

Hi Cloud
I believe with immune modulators that symptoms may indeed get worse for (hopefully) a short period as the system balances itself out. This is what I read on various LDN websites & message boards.

Of course this is no comfort if you are finding symptoms hard to manage before you start LDN. This is why it's advised to go low & slow & if symptoms get too bad back down till you stabilise.

It's very much an individual thing as some can jump in at the highest dose of 4.5ml. I found it very hard at 1.5ml and backed down to 0.1ml and am currently on 0.75ml after 3 weeks. It's all very experimental & of course there's always some it just won't help.

I've read enough to know that, for me, it's worth an experiment.

True that a few of the "immune modulators" will alleviate symptoms, but not all of them....my experience is that some "so-called" modulators will also cause symptom exacerbation. For me it's not as simple as a product being labeled as one or the other. Of course I won't know about LDN without trying, but I think feedback was a good idea first. Great discussion.

 

[Noreen Martin]

After 4 years of being on LDN, I can honestly say that it has helped with opportunistic diseses and being on it I did not have to take the standard antibiotic that is given to AIDS patients with low CD4's. However, it didn't help with chronic fatigue or my fibromyalgia symptoms, so therefore, I took it along with the HAART. The two together is a good combination because one drug cannot possibly do everything.

 

[oerganix]

After 4 years of being on LDN, I can honestly say that it has helped with opportunistic diseses and being on it I did not have to take the standard antibiotic that is given to AIDS patients with low CD4's. However, it didn't help with chronic fatigue or my fibromyalgia symptoms, so therefore, I took it along with the HAART. The two together is a good combination because one drug cannot possibly do everything.

Hi Noreen, thanks for posting. Have you tried NADH for fatigue? It takes about 6 weeks to get to optimum and then continues to get a little more effective for another 5-6 months, in most people. It makes all the difference in the world for me, energywise. I take 10mg/day and keep the sublingual handy for taking before doing anything physical, like going for a walk. I've never had any side affects.

 

[Cloud]

Diva....Thank you, I see my GP Tuesday and I'm going to go for it with LDN. Thinking back when I tried LDN many years ago, I started at 5mg, and I didn't take it very long. So, maybe if I start with a much lower dose and give it more time I can get a better result. I haven't had "immune symptoms" (swollen lymph glands, sore throat, achy muscles, etc) since they evolved into being all "neuro" 6 years ago....but if LDN works to balance Th1/TH2, maybe it will also cool the cytokine induced inflammation.....which for me would be a major benefit for symptom reduction. Anyone have any info on this?

 

[Cloud]

After 4 years of being on LDN, I can honestly say that it has helped with opportunistic diseses and being on it I did not have to take the standard antibiotic that is given to AIDS patients with low CD4's. However, it didn't help with chronic fatigue or my fibromyalgia symptoms, so therefore, I took it along with the HAART. The two together is a good combination because one drug cannot possibly do everything.

Hi Noreen...when you say "standard antibiotic for low CD4's" are you talking about prophylactic use for preventing opportunistic infection.....or for the anti-inflammatory effects of some antibiotics (especially macrolides)?

 

[leaves]

Maybe this helps:
dr klimas prescribed me 2mg for 3 wks
then 3 mg for 3 wks
then 4.5 mg

 

[Diva55]

Hi Cloud
Yes of course jumping in at 5mgs sounds too much if you're very sensitive. 4.5ml is supposed to be the maximum dose so you were already over the limit!

Maybe it would be a good idea to get the liquid as it gives you the flexibility to play with the doses as with the syringe you can measure out as low as 0.1ml which is where I ended up.

By gauging your reactions to each dose you can then move up slowly. The liquid I got lasts for 56 days in the fridge so it gives you enough time to play around with it.

I believe the starting dose is 1.5ml which is where I started off but backed down as it was too much for me.

Are you in the UK? if so Dickson's Chemist is the place your GP needs to go. Ask me for details if you need them.

If I come across any neuro info I'll let you know.

Good luck
Diva

Diva....Thank you, I see my GP Tuesday and I'm going to go for it with LDN. Thinking back when I tried LDN many years ago, I started at 5mg, and I didn't take it very long. So, maybe if I start with a much lower dose and give it more time I can get a better result. I haven't had "immune symptoms" (swollen lymph glands, sore throat, achy muscles, etc) since they evolved into being all "neuro" 6 years ago....but if LDN works to balance Th1/TH2, maybe it will also cool the cytokine induced inflammation.....which for me would be a major benefit for symptom reduction. Anyone have any info on this?

 

[Cloud]

Thanks Diva, Leaves.....Very helpful info. I'm in California, and my GP's office is next door to a compounding pharmacy. So, getting it won't be a problem at all. I didn't know it came in liquid...I'll ask her about that....if she doesn't like that idea, I'll get a low dose capsule. She is very accommodating. Doing a slight amount of research shows that LDN may be a good idea for me regardless of the symptoms being predominantly Neuro. Here is a quote and link I just came across.....

* LDN reduces inflammation
* LDN reduces oxidative stress
* LDN reduces apoptosis of oligodendrocytes in MS
* LDN down regulates but doesn’t eliminate inflammatory cytokines
* LDN increases beta endorphin levels
* LDN facilitates tissue repair and wound healing
* LDN stimulates the release of neurotrophic factor from astroglia
* LDN restores CD4 levels in HIV infection
* LDN increases levels of NK lymphocytes


http://autoimmunedisease.suite101.com/article.cfm/low_dose_naltrexone_update

 

[aquariusgirl]

HI
someone mentioned feeling like they had a pillow in their head.. Leaves, maybe?
I am wondering if that is the effect of viral die-off which can release toxic metals that make one feel very spacey.
Maybe try using pectasol/activated charcoal/EDTA complex or OSR1 to mop them up?
It's amazing how this works for me. I just keep learning this lesson over and over again. When you get to that spacey, whacked out place, it's hard to think logically.

TO back up for a second, I am guessing that the LDN causes the immune system to go into viral or pathogen killing mode and as the DAN! people have shown, viruses hold onto metals, bacteria holds on to aluminum, so you get release of toxic metals as you kill off the pathogens.

Easily googled, but too busy today to find links.

 

[aquariusgirl]

Cloud
how functional are you after all your txt with Peterson? Are you able to work again ...or how would you rate yourself?
Did Peterson have nothing more for you after the Vistide and IVs?
What was his attitude with respect to your further txt/ healing ?

 

[Diva55]

Hi Cloud
Good info.

I don't know if you saw the various links I posted on page 21 of this thread http://www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone/page21

I think there is a specific Yahoo LDN group for ME or CFS (can't remember) which you could look up. I've joined the LDN / FM & General LDN group .

The websites links have loads of information worth having a look through if you are up to it.

With the compounding pharmacy (great to have one so near) I know that only a few in the US are recommended. Due I believe to price & purity of LDN. Ensure you do NOT get a time released version.


Pharmacies that are known to be reliable compounders of LDN This list is from http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone which is a very informative website.


Irmat Pharmacy, New York, NY
(212) 685-0500(800) 975-2809 (212) 532-6596

Gideon's Drugs, New York, NY
(212) 575-6868 (212) 575-6334

The Compounder Pharmacy, Aurora, IL
(630) 859-0333(800) 679-4667 (630) 859-0114

The Pharmacy Shop andCompounding Center, Canandaigua, NY
(585) 396-9970(800) 396-9970 (585) 396-7264

McGuff Compounding Pharmacy,Santa Ana, CA
(714) 438-0536(877) 444-1133 (877) 444-1155

Skip's Pharmacy, Boca Raton, FL
(561) 218-0111(800) 553-7429 (561) 218-8873

Smith's Pharmacy, Toronto, Canada
(416) 488-2600(800) 361-6624 (416) 484-8855

Dickson Chemist, Glasgow, Scotland
+44-141-647-8032+44-800-027-0673 +44-141-647-8032

Thanks Diva, Leaves.....Very helpful info. I'm in California, and my GP's office is next door to a compounding pharmacy. So, getting it won't be a problem at all. I didn't know it came in liquid...I'll ask her about that....if she doesn't like that idea, I'll get a low dose capsule. She is very accommodating.

 

[leaves]

Hey aquariusgirl!
Yes that was me thanks so much for this suggestion, I immediatelly digged up the charcoal

 

[darkrobot]

Hi folks, I'm new to this thread but thought I'd add my experience with LDN. I have had ME/ CFS for many years, in a mild/ moderate form with lots of remissions and relapses, but it was misdiagnosed as various other things until 2 years ago, when I had a horrendous crash. That is when I got the ME/ CFS "diagnosis", and was finally signed off work despite having struggled to cope for years (my previous GP refused to believe there was anything physically wrong with me as all my NHS blood tests were normal).

The NHS offered me nothing apart from CBT. However about 9 months ago, I started a combined antibiotic protocol after a private doctor found spirochetes and micrococci in my blood. I have also been on various supplements for mitochondrial dysfunction. I have also been taking as much allicin (natural antibiotic, antiviral, antiparasitic and antifungal) as I can afford. These have all helped a lot, but I was still far from being completely well.

A few months ago I started on LDN, and the results so far have been amazing. I am now up to 3ml per day and am, dare I say it, feeling better than I have done for many years- maybe ever? I have lots of energy, have been doing exercise for fun, even some jogging. This time last year I could barely make it to the end of my street without collapsing. I was deteriorating rapidly and feared that I would soon need a carer as even getting out of bed, washed and dressed by myself was a mammoth task. If I went food shopping (there was no-one who could do it for me) I spent the rest of the week recovering from the exertion.
:In bed:

The biggest revelation however, has been the reduction in brain fog. I had no idea how poor my cognitive function had become until my brain started working properly again! I think everyone (including me) just assumed I was a bit thick. I have recently started an Open University course, eventually leading on to a law degree, which would have been absolutely inconceivable before. My assignments so far have gone really well, I have got excellent feedback and am getting top marks for the first time since primary school! (I was quite a clever kid, until my descent into brain fog started at about the age of 9/10).

Sorry for waffling, but I wanted to give a bit of background to provide perspective for the improvements. It is obviously dfficult to judge exactly how much is down to LDN and how much to the other meds, but I have noticed a great deal of rapid improvement since starting LDN. I don't want to count my chickens just yet, but am hoping I am finally on the road to recovery. My only real side effect was initial insomnia- however that soon wore off and I am now sleeping better than I have done in years and feel refreshed on waking rather than resembling the living dead.

I am also finding it very interesting hearing about others' experiences, on this thread and elsewhere.

 

[oerganix]

Welcome, darkrobot. Good to have you here.

You said: "However 1 year ago, I started a combined antibiotic protocol after a private doctor found spirochetes and micrococci in my blood. I have also been on various supplements for mitochondrial dysfunction. I have also been taking as much allicin (natural antibiotic, antiviral, antiparasitic and antifungal) as I can afford. These have all helped a lot, but I was still far from being completely well."

Please tell me more about your antibiotic protocol, your supplements for mito dysfunction and...what is allicin?

I've been on LDN for about 6 weeks and it's helping, but I'm always on the look out for extra help.

 

[darkrobot]

Hi Oerganix,


My antibiotic protocol has so far consisted of many months of amoxicillin, a month of azithromycin, and a month of clarithromycin, which I am still taking. The doctor I am being treated by seems to prescribe slightly different protocols for different people. I know some people respond to some antibiotics better than others, so there is some trial and error involved. The protocols are attempting to eradicate steath bacteria in all their life forms, hence the different types of abx and length of treatment. He also sometimes prescribes ivermectin, an antiworming treatment, if he detects microscopic parasites in your blood.

I was tested for mitochondrial dysfuntion by Acumen labs in the UK, via the same private doctor who did the blood microscopy. Based on the results he recommended magnesium malate, zinc citrate, coQ10, glutathione, and NAC. I am also taking D-ribose. Again I believe this varies from person to person, depending on test results.

I heard about allicin on another ME/ CFS forum- many people have experienced improvements when self-treating with it. It is an extract of garlic, and needs to be in its stabilised form or its properties are destroyed. It is anti-bacterial, anti-viral, anti-parasitic and anti-fungal. In the UK it is known as Allicinmax, and in the US as Allimax. In the UK you can buy Allicinmax at Boots the chemist, but it is also available online on various supplement websites. I know some people have tried the budget alternative of crushing a few cloves of garlic into a dip/ salad etc, and have seen small improvements as result- presumably as there will be less allicin compared to the capsules. Apparently if you do this it is important to eat the garlic raw and within a few minutes or so of crushing it- I think it degrades when exposed to air or something. Apologies for the vagueness of some of this information, I am tryng to recall info from various websites/ personal accounts so please don't take any of it as gospel!

This is the website of Allicin International, who manufacture products contaning stabilised allicin. http://www.allimax.com/ Several people on the other ME/ CFS forum I mentioned have rung the number on the "contact us" page and had free telephone consultations to get advice on dosage, contraindications etc.

Obviously I am not specifically recommending these treatments to anyone- it's all individual, and regarding allicin, is based on the experiences of sufferers who are self-treating. If you do decide to try it, proceeed with caution as you would with anything else. In the absence of any meaningful research or treatment in the UK, most people are reduced to taking shots in the dark and reporting back in the hope that what helped them will help others. Perhaps it is a particular subgroup who are seeing improvements?

Personally I have found that the combination of conventional abx, allicin, mito supplements and LDN has produced major improvements. I am praying this lasts!

Sorry for the lengthy post, I hope it helps in some way.

P.S. I have been on the protocol of conventional abx for about 9 months, rather than 1 year as I said in my previous post. I was trying to post different things on two sites at once and ended up confusing myself! Obviously the brain fog has not disappeared entirely. I have now edited my earlier post.