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» LymeNet Flash » Questions and Discussion » Medical Questions » Low Dose Naltrexone users

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Author Topic: Low Dose Naltrexone users
jocus20
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Hi im looking for others experiences with LDN. I just started it a couple nights ago.

First, I would like to know if it is okay to take xanax while taking LDN? I know u cant use oopiates but someone else told me no xanax as well...is this true?

Ive also been experiencing some weird stuff since starting it. I have been getting bad vivid nightmares and disrupted sleep. Will this go away?

Today i started getting this bad physical anxiety and jittery/tremory feeling. Anyone else experience this? Is it normal?

Thanks for any info,
JOe

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sammy
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I had crazy vivid dreams for the first month on LDN. That was the only side effect I experienced and it did go away after the first month.

Check with your pharmacist and doctor before taking xanax to make sure that there are no interactions.

Overall, I think that LDN may be helping to decrease my pain. I'm on my 3rd month now, and i've only been on the full 4.5 dose for about 2 weeks.

Hope you feel better soon:)

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nomoremuscles
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Xanax is fine with LDN.

The sleep thing is normal, too. For most people it seems to go away in a couple of weeks, sometimes a month. The anxiety you're experiencing may be a neuro herx.

I got whacked with a pretty rough neuro herx at firt. I started at 1.5 mg LDN and kept that dose 2-3 weeks, until the herx subsided, then raised the dose to 3 mg and got smacked again. Long dormant symptoms came crashing back. I held at that dose a few weeks, till stable, then upped it to 4.5 mg where I have stayed.

I've been on it almost a year and a half now. It's been very helpful, especially the first few months. I was in terrible shape, bedbound and unable to do tolerate any Lyme therapy. The LDN got me out of bed, and allowed me to reintroduce antimicrobial therapy, and so far I am tolerating the herxes.

Good luch with it.

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MariaA
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you should be able to handle narcotic pain relievers on low dose naltrexone. It's higher doses, as prescribed to treat heroin addiction, that block one's ability to take narcotics. Our dosage doesnt' really change their effect as far as I can tell.

(edited to make typos make sense)

[ 05-01-2009, 05:05 PM: Message edited by: MariaA ]

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mtnwoman
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I had hot flashes on LDN, 2mg. It was disturbing my sleep too much so I stopped it.

I already take bio-identical estradiol and I didn't want to up that dose to counter the LDN.

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pryorka
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Stop taking xanax, if you have lyme you clearly don't need xanax. It's just a poison that will throw your body off that much more. LDN made it a little difficult to sleep for the first week then after that things were back to normal. If you can't sleep have your hormone levels checked then balanced, don't take a profit driven drug because some idiot tells you to.
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jocus20
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Thanks for your responses. I took a night off from the ldn to see if those symptoms subside a bit.

Pryorka,

Im gona completely ignore your response. Thats the most idiodic thing ive ever heard. People like you are the reason i hate posting on here. YOu obviously have never had dabilitating anxiety. Trust me i hate taking prescpiption drugs and avoid it as much as possible but sometimes there is no other choice.

--------------------
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also check out my videos:

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D Bergy
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I have been on LDN for a couple of years, but not for Lyme.

I had vivid dreams at first, but not nightmares. I kind of enjoyed the dreams. They only lasted two or three weeks.

You should not take opiate based pain killers with LDN. I would ask an expert about the Xanax.

LDN could be indirectly causing your anxiety because your immune system is working better. When it is working better it is killing more bacteria and a temporary inflammatory response takes place within your body. Inflammation can cause depression and/or anxiety.

I would not stop taking it because you are going to have to go through this sometime or another.
You may as well get it over with.

Dan

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n.northernlights
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I have some more vivid dreams, but not too disturbing. I got low blood pressure, but that went away. I got the headache, and that went away too.

I did up very slowly, and in hindsight it was a bit slow, I should have upped quicker.

Another side effect is that if you take thyroid meds like synthroid or Armour Thyroid, you will have to lower the dose, or you go hyper. TSH also gets normal (mine was way too low and on LDN it finally went normal)

If your thyroid is working hard (and you are not on thyroid hormone replacement), because you are borderline hypo, maybe LDN causes you to go temporarily hyper, but your body will self-regulate on that one.

I was on a thyroid hormone dose that was too low for me, ft4 was at the bottom of the range and ft3 too, as my doctor liked it tthat way, and I was quite depressed, and LDN caused the TSH to go up to 0,8 and the ft4 and ft3 went up to a third of the range ant the same time, and the depression lifted. I read other postings about depression going away. About anxiety, I do not remember postings, but chances are it gets better.

nora

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Clarissa
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I haven't posted for a long time but I felt compelled to back up Jocus20's complaint about Pryorka's ignorant comment about xanax.

If I hadn't taken xanax during my horrific and intense Bartonella treatment, I definitely would have killed myself. Xanax was the ONLY thing that calmed me down and kept my anxiety at bay and my mind at a rational level.

Now I am in remission and have weaned off the xanax to a much lower amount. If I have to take 1-2 mg's of xanax for the rest of my life, I don't care. I'm better and making baby steps back into the world.

Furthermore, I had not ONE but TWO different respected LLMD's PRESCRIBE that xanax for me. Until you walk in the shoes of the jittery, anxious, creepy crawly hell that Jocus and I experienced, then please try to restrain from making such definitve comments as new people need to know that IT IS OKAY to have band-aid meds as you go through this hell.

Blessings to Jocus and my other good friends.

--------------------
Clarissa

Because I knew you:
I have been changed for good.

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paulieinct
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Funny, you could have a glass of wine before bedtime and no one would scream "ADDICTIVE POISON!!!!" But say xanax or klonipin and people really get their dander up. Yet alcohol is the worst drug for anxiety because of the abuse potential, and the psychomotor agitation that ensues during withdrawal. There is a place for benzodiazapines in Lyme treatment when anxiety and panic are such that life becomes just intolerable. Take them appropriately, wean off when you don't need them. They can be a life-saver. Ditto with antidepressants.
Just my opinion.

To those wqho rant against the pharmaceutical industry, please remember that the herb/supplement/vitamin industry is also HUGE. They have their own lobbyists in Washington. And these supplements are not even regulated as to purity or effectiveness. Who knows what crap from what third world country is in these things, not to mention the vermin and rodents that are likely to infest any herbal product when it is gathered and stored.

200 years ago people took herbs because that's all they had. Any herb that really worked only worked because it exerted a drug effect. Back then, people would have clamored to have access to the medicines we now have.

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Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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Amanda
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Have any of you taking LDN noticed that your WBC or other immune cell counts improved?

My WBC count and CD 57 count are chronically low. I am wondering if the LDN could improve that...

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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cleo
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I ditto the responces about xanax. If it wasn't for a small dose of it during really bad times. I also would have killed myself. No problem getting off of it either like many have said. It is not poison. Lyme is poison.
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nomoremuscles
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My white counts were chronically low. After several months on LDN they came up quite a bit, to around 8 if I remember.
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jocus20
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Thank you all for the responses and backing me up about the xanax. I appreciated it.

--------------------
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also check out my videos:

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Lymeorsomething
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What about fatigue issues? Did LDN improve anyone's fatigue?

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"Whatever can go wrong will go wrong."

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CD57
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Yeah I'm gone chime in to Jocus and Clarissa....Xanax/benzos can make this whole thing bearable....and isn't quality of life what it's all about???

This was an exasperating comment, pryorka!

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Tracy9
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I'm sorry but I don't know what LDN is or what it does, can someone clue me in?

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Myco
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I didn't see this thread and started another one by mistake.

I am interested in starting LDN as my sleep has recently suffered again and I have bad bart anxiety etc...

Is there a downside to LDN? Side effects? Just curious what kind of damage the drug could do long term as I am already on abx!

Any concerns with Cancer etc...?

Thanks for any feedback!

Chris

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jocus20
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Check out lowdosenaltrexone.org

LDN supposedly blocks endorphin receptors in your brain for a couple hours while you sleep. This caused you to produce more and boosts your immune system and regulates autoimmune conditions.

Some people with lyme have found that it has really helped.

There is somee minor side effects at first. Just some disturbed sleep and vivid dreams.

From what i read this drug is uded for cancer also so no concersn there.

Joe

--------------------
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also check out my videos:

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lymeHerx001
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quote:
Originally posted by pryorka:
[QB] Stop taking xanax, if you have lyme you clearly don't need xanax. It's just a poison that will throw your body off that much more. LDN made it a little difficult to sleep for the first week then after that things were back to normal. If you can't sleep have your hormone levels checked then balanced, don't take a profit driven drug because some idiot tells you to.

Rediculous comment!
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D Bergy
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LDN is Low Dose Naltrexone. Basically it tricks your immune system into working better.

It has no known long term side effects, other than protecting you from autoimmune diseases and Cancer. It is used as a Cancer treatment.

It is probably the safest drug out there. I will have to take it for life, so i have researched it thoroughly.

Dan

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lymeHerx001
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Im being very hope full.

My dad said to me, "do you have to take this for the rest of your life? And i said "if it works then fine!!!!!"

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TerryK
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Dan - you said that you will have to take it for life?

According to the book "The Lyme Disease Solution", written by an LLMD, over time, LDN trains the body to produce endorphins in it's normal cyclical way and LDN is no longer needed to sustain the benefits.

Did you find something different in your research? I haven't spent a lot of time researching this yet so maybe the short term treatment only works for some people and others need long term treatment in order to maintain the benefits?

Terry

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Tracy9
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I"ve never heard of this, and have seen four top LLDs. Why don't they all use it if it is so great? I mean, I'm just wondering why I've never heard any of them mention it.

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NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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RANGER1959
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sorry to but in here. i bumped into this web site looking for anwsers. i am an leo and veteran. i have a tbi chronic pain headaches fybromyalgia hormon issues the works. sarcadosis along the lines of lupus. the goverment does not do pain meds but i begged and yelled long and loud enough to get ldn. i have to break it down myself from 50mg tablets. its what the va calls a trial. its life or death for me. i have to take xanex to sleep and waking up is going from dead to barely alive over a couple hours. id be interested in anything anyone has to contribute. i should have it next week.

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M R DEBAKER

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Yogamom65
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Ranger1959 How do you break down the 50 mg tablets? I am wanting to do that since it is so much cheaper than getting it compounded.

--------------------
Treating lyme and bartonella with abx and herbs

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lymehope
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brake the tablet in half as it is difficult otherwise to dissolve otherwise. In a dropper count 50 drops of water , add pill and mix thoroughly .
Every night before bedtime take one drop and work up to 5 drops. These were direction by my LLMD.
It has helped me quite a bit.

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6Hypnone
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How low would be a good place to start? And how slowly to wean up?

Also, what are the herx's you experience from it (if any)? I just dont want my nerve pain to get worse (esp since I'm taking it to reduce it!)

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Keebler
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-
LDN requires very careful and slow incremental adjustments for the first month or two. The steps cannot be rushed.

Just studying up about it will take at least 10 hours, maybe much more. Don't take short cuts in learning about it and don't rely on ANY posts on the web. Use those for a starting point but never rely on any post without further confirming or clarifying with expert writings or medical advice.

This works great for some and is certainly worth a look --

first check out if it can be afforded - that may be the deciding factor.

Know, too, that while it's great for some - it can be terrible for others (and I was in that latter category even with the most careful start).

Be sure to read all the articles, threads and books by expert authors about this - and ask LLMD their thoughts.

There are also other ways to support immune system (first: be sure infections are being adequately addressed: liver & adrenal support are good.

Medical Mushrooms good to look into as well


LDN - Low Dose Naltrexone

some threads.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=112225;p=0

Topic: Why does LDN cause my symptoms to explode?


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/110640?#000000

Topic: Does LDN make you feel tired?


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/108543?

Topic: Low Dose Naltrexone Survey
MANY GOOD RESPONSES to this reported

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/88159?
About the only one who did not: Amanda (but it seems she started way too high and increased too soon she started full dose that is to be worked up to over a month's time from 1.5 mg start) . . . see her posting history & other comments in the thread.

Search additional and more recent links at LymeNet Archives - the "search" link.
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/search/search_forum/1

Search LymeNet Archives - in both general and medical forums, subject line with separate searches for "LDN" and then for "naltrexone"


About the name, it's very similar (in name but not chemical structure / purpose) to a drug used to treat opioid overdoses / emergencies. Be sure when you ask about it to pronounce it well and that who you talk to is very clear on that.

Not what you want: Narcan™ (naloxone) is a prescription medicine that blocks the effects of opioids and ...
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Keebler
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http://www.lowdosenaltrexone.org/

Welcome to the Low Dose Naltrexone (LDN) Home Page


https://www.youtube.com/watch?v=rBd2gv8UGU0

Norwegian LDN Documentary; with English subtitles.

22 minutes - YouTube - Sept 19, 2017
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