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low-dose naltrexone (LDN) questions

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Posted 9/7/2015 2:01 AM (GMT 0)
For those that use this for pain-

From what I've read the low dose version is made by a compounding RX pharma only? - correct?

Is 4.5 mg the right dose? But do you start out smaller and ramp up to 4.5?

Even the Mayo showed studies with good pain reduction, so If my Dr doesnt know, I have articles.

What else do I need to know?

I have Hashimoto, so I will need to monitor thyroid levels - thy med need might go down.

thanks
Posted 9/7/2015 2:55 AM (GMT 0)
Yes, you need to get it from a compounding pharmacy.

The optimum dose is different for everyone...
When i tried it, I started at 1.5 mg (or was it 2.0 mg...can't remember). Gradually increase.

You can decide what filler you want since it's made for you.
Posted 9/7/2015 2:38 PM (GMT 0)
I did 1 mo 1.5, now several months later 3mg, but have not gone further. Can't tell what is doing what, but I think (?) it has been helping.

Oh, & yes to the compounding. Tho wondering if I need to find another, as mine seems to charge twice what others here have paid.

To hear Dr H & others talk about it having such immune enhancing capabilities, ya gotta think it is worthwhile. I take in the a.m. (many you will read experience sleep disturbances, especially taken in the p.m.). I wonder if I do need to soon ratchet up to the 4.5, but still confused with relatively new abx or LDN -or- the combo that has helped.

A study here from NIH re LDN helping the anti-inflammatory effect (which I did not know! And yet I understand anyone with autoimmune suffers):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
Posted 9/7/2015 3:33 PM (GMT 0)
Astro - here is the link to the website I first found when researching LDN:

www.lowdosenaltrexone.org/
Posted 9/8/2015 3:37 PM (GMT 0)
Girlie- Great LDN site!

You dont take thyroid med right?

I think its bluebyou here who takes both?
Posted 9/8/2015 4:44 PM (GMT 0)
No, I don't take thyroid med.

I know cd takes thyroid - but don't know if she takes LDN.

That website is kind of rudimentary...but it's got a lot of good information.
Posted 9/8/2015 7:08 PM (GMT 0)
Yes, I take both :)

And, that site lists the compounding pharmacies that are known to prepare LDN correctly.

My LLMD originally referred me to a compounding pharmacy that he uses for bioidentical hormones. The price was double what Irmat charges.....and Irmat is the pharmacy that made the LDN used by Dr. Bihari.

For whatever it's worth, my LLMD wanted to start me on 3mg but I knew enough to start with 1.5mg.

I was able to go up to 3mg and then 4.5mg without any issues.

4.5mg is the recommended dose for Lyme.

And, you really don't want to take higher doses. If anything, some people feel better with lower doses.

You see, LDN blocks endorphin production for awhile. It's the body's rebound effect of increased endorphin production that benefits us. You don't want to shut that down any longer by taking a larger dose of LDN.
Posted 9/9/2015 11:58 PM (GMT 0)
I've been taking low dose Naltrexone for several months at the dose of 5mg. I started at the 4.5mg. It was prescribed for pain issues due to fibromyalgia and sciatica. The more I've been reading up on the lyme-type infection I have been diagnosed with, the information tells me the infection can settle in the spine as well. It will be interesting to see further in my treatment of six different antibiotics if the sciatica and fibromyalgia pain disappears with my antibiotic treatment.
Posted 9/10/2015 1:42 AM (GMT 0)
I'm on thyroid meds and started LDN a little while ago. Started at 1.5, then went to 3, then went to 4.5. It's hard to say exactly what the difference is but I do believe it has been therapeutic for me. The site does say to watch out as you may need to lower your thyroid meds. In my case, I actually had the sensation that it allowed my thyroid meds to work better.. But certainly not that I needed to lower them. I was just relieved, like I could actually finally feel some positive effects from my thyroid meds.
Posted 9/10/2015 11:55 AM (GMT 0)

marigold33 said...
In my case, I actually had the sensation that it allowed my thyroid meds to work better.. But certainly not that I needed to lower them. I was just relieved, like I could actually finally feel some positive effects from my thyroid meds.

I'm really, really happy that you've experienced this, marigold33!

Sorry to say, I suspect that you're one of countless thyroid patients who isn't adequately medicated. Does your doctor only check your TSH level? If yes, that could very well explain things. I will gladly expand on that if you'd like.

I was stable for almost a year on the same thyroid meds doses and doing well....until Lyme hit. I then needed monthly thyroid med dose increases.

Well, after being on LDN for 6 months, I've now had to reduce my thyroid meds doses for the past two months. I'm still not down to the doses I was taking when I first started Lyme treatment but, it's nice to think LDN is doing something to undo the impact Lyme has had on my thyroid function.
Posted 9/10/2015 9:25 PM (GMT 0)
cd3764, Thank you for the note! I'd love to chat with you about this for a second, actually. I've been very perplexed by my "hypothyroidism". It was the first thing I was diagnosed with, 2 years before my lyme diagnosis, though I feel pretty confidant it's a symptom of the lyme. The doctor measured lots of things... TSH, T3, T4... My TSH was only slightly raised but because my T3 and T4 were so low, she was willing to give me medication. Still, I wonder if the realer issue isn't how much T3 and T4 is in my system, but how much isn't being absorbed under the toxic conditions of my body... I say this because every time I herx I gain a couple pounds (this at a time where I eat almost nothing). It generally comes off following the herx. But yeah, I struggle to feel at all ok on a daily basis. When I tried to come off my thyroid medication (because I've struggled with accepting that I need to be on medication) I felt awful. I've wondered if I need more, though my TSH is so entirely suppressed at this point, that seems somehow irresponsible...
Posted 9/10/2015 10:31 PM (GMT 0)
Astroman - hope you don't mind me talking thyroid with marigold33.

Marigold33

Lyme is infamous for causing thyroid problems so, it's entirely your thyroid function will improve once you heal from Lyme. In the meantime, it's really important to try to maintain optimal thyroid levels since thyroid hormone fuels every single cell in the body. We need our bodies functioning optimally to give us the best shot at healing from Lyme.

You may know that TSH is a pituitary hormone. Looking at TSH to judge thyroid status is like looking at the odometer in attempts at figuring out how much gas is in your tank.

The right way to judge thyroid status is to look at the actual thyroid hormone levels....Free T4 and FreeT3.

People who are taking optimal doses of thyroid hormone will have suppressed (below-range) TSH. Why? Because the body "knows" (via a feedback loop) that it's getting enough thyroid hormone and the pituitary will no longer need to stimulate the thyroid to produce thyroid hormone.

For whatever it's worth, on a "good" day, my TSH is .007. It's not uncommon for my TSH to be virtually unmeasurable - <.005 for example.

What's most important is that my FreeT4 and FreeT3 levels sit near the high ends of their ranges. Those are the types of levels that keep me free from thyroid symptoms....and my needs are not uncommon.

Healthy people have FreeT4 and FreeT3 levels above mid-range....usually around 75% of range and possibly higher. Those are the types of levels a thyroid-savvy doctor will aim for when prescribing thyroid meds.

The following article written by a thyroid-savvy doctor explains much:

www.thyroidscience.com/hypotheses/dommisse.feb.2008/dommisse.feb.2008.pdf

If you'd like to share your most recent thyroid labs, I can show you how to interpret them. I do ask that you start another thread for this purpose only so we don't keep hogging astroman's thread ;)

And, I'll gladly answer any other thyroid questions you may have. I've been dealing with thyroid disease long before Lyme. Just as with Lyme, I had to research extensively to get the proper care. I'm happy to share whatever I know.
Posted 9/11/2015 2:51 AM (GMT 0)
If you stopped LDN, how long would it take for it to be out of your system?
Posted 9/11/2015 2:57 AM (GMT 0)
24 hours

www.ldnresearchtrust.org/sites/default/files/LDN_Mechanism_Of_Action_Pradeep_Chopra_MD.pdf
Posted 9/11/2015 3:04 AM (GMT 0)
I started initially with 2.0mg Naltrexone. My LLMD increased it to 4.5mg gradually. It really does seem to help. I take it at night as I could not sleep at all with the joint pain and the tingling sensations in my arms and feet. Total nightmare! I have been sleeping about 8 hours per night since. I strongly recommend it. It does have to be compounded by a compounding pharmacy. My insurance does not contract with the pharmacy near my home but it is well worth the expense.
Posted 9/11/2015 3:53 AM (GMT 0)
Ok~All my LDN pros~~
Took LDN for 3 months, stopped taking yesterday a.m. This is my 2nd day/nite w/o. 1st & 2nd day no problemo; however nightfall now & torture time.

So I stopped LDN -and- then I stupidly added a couple of variables: serrapeptase (2x 40k unit doses) & just one wee drop of houttanyia.

Tonite, body pain imploding (always worse @ nite--but then add emotional breakdown to the fun mix).

So I can't tell if stopping the LDN is the reason? Could serrapeptase have me herx, or just 1 drop of houtt??

(4 months clari abx so also wonder if i am just backsliding & needing to change that up-?).

Overwhelmed! confused
Posted 9/11/2015 11:17 AM (GMT 0)
Up now in the 3s...just sleeplesness, no real pain issue, tho-yay! So wondering if I bypass taking LDN again today,or if I do, will I be squirmy, in pain when I visit our accoutant later this evening? I had the kleenex box next to me last nite so I don't want to have the guys seeing me gushing tears (tho perhaps a good reaction to Unc Sam taking our $!).

Maybe it was one of the other culprits-serrapeptase or houtt?

Someone pls give their thoughts!
Posted 9/11/2015 12:27 PM (GMT 0)
Sorry to hear of these issues, happyjo!!

It is not uncommon for people to herx on starting doses of serrapeptase and/or herbs.

I'm sure you know that serrapeptase is a biofilm buster....and Houttuynia attacks bart.

I blame one or both for your herx.

What prompted you to stop taking the LDN?
Posted 9/11/2015 2:19 PM (GMT 0)
I began the LDN one month after beginning a new abx. So I didn't really know which was effecting improvement. My doc seemed to think the abx, but he's not much of a dabbler with LDN.

Last appointment, doc said well, it's probably the abx helping improvement, but stop the LDN & see. I had been off of LDN for 2 days--day one & 2 both good, but then evening 2--agghhhh!

Altho I understand serrapeptase is supposed to help with inflammation & blood flow, I guess I didn't think it might be a culprit in creating a herx (geezch--like everything does now it seems & I should be aware!). And then 1 teeny drop of Houtt could effect so quick, too?

As my mind last night was anxiety crazed & unable to sort thru any simple math, I just went around mumbling like a bag bum (sympathy for this group of displaced home folk, & no offense intended, just a rather apt descriptive).

My analytical spouse advised me to go back to where I was before, as in last week, & do whatever it was I was doing--meaning get my butt back on the LDN, thereafter adding 1 additional per week. But I'm not quite convinced with adding back in LDN?

Analysis/paralysis--If I stop taking the LDN, wouldn't it have reacted sooner, like day 1, or evening 1 or even day 2? I would like to lessen my arsenal of meds if at all possible. It's not a king's ransome, but the LDN is a drive to get at the compounding & they charge so much more than what I hear from others here @ 65 for a 1 month supply!

Yet if this IS helping, & stopping it added to my meltdown, then I think I need to retake. Bother, bother....how do I know?

I do think holding off on the serra & houtt & adding those in one at a time makes sense (duh!).

But cd~Do u think I should go back on the LDN? I'm sitting here typing & feeling not too bad, but so confused! confused

Post Edited (happyjo) : 9/11/2015 8:25:52 AM (GMT-6)

Posted 9/11/2015 3:11 PM (GMT 0)
Herbals get into the bloodstream rather quickly and effects can be felt as soon as 20 minutes after the dose.
I've read countless stories on here from people who were surprised at the herxes they got on minute doses of herbals.

If you read the advice of people who have been taking herbals for a long while, it's basically start with one drop and hold for 4-7 days to gauge your reaction. I recently read a post by a woman who couldn't get past 1/2 drop due to herxing.

LDN works by blocking endorphin production for awhile. The benefits we feel are from the body's resultant increase in endorphin production.

It makes sense that you didn't necessarily feel the effects of stopping LDN right away. It might have left your body after 24 hrs., but you could very well have still been benefiting from your body's increased endorphin production until that ceased.

Without a doubt, I think you should go back on LDN. It just make sense for those of us dealing with Lyme (and possibly autoimmune issues).

And, perhaps you might buy your LDN from Irmat in NYC - the pharmacy that Dr. Bihari used. I get my LDN from them - 90 days' supply for $114 with free shipping. They even have an automated refill service. Their contact info is on the LDN site that Girlie linked.

PS I love your term "analysis/paralysis" - that's exactly where I am with artemisinin lol
Posted 9/11/2015 3:32 PM (GMT 0)
Thank you cd! It helps immensely! And thx to all here!

cd~ I had both the 3mg I'd been taking & a 4.5 I had not yet begun...so with these 2 days off & 3 months behind me at the 3mg level, I'm trying today the 4.5. Eek--so hope this doesn't do ye old herx, but does the opposite! And yes, going on the Irmat website now for my refill--thx!

And heeding the power of herbs! cd~Let me ck out your thread re arteminisin to see where you are going with this!
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