lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
its 1st night of naltrexone lets see.
[ 05-19-2009, 11:50 AM: Message edited by: lymeHerx001 ]
Posts: 2905 | From New England | Registered: Sep 2004
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
the side effects should fade- after a couple of weeks of bad sleep. No fun. After that it should stop disturbing you. My friends commented that I turned into a jerk while on the two weeks of bad sleep.
-------------------- Symptom Free!!! Thank you all!!!!
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
took 1 mg last night didnt notice much.
Gonna try for the full 1.5 tonight.
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Jill E.
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posted
LymeHerx,
Please keep us posted. One of my doctors wants me to try it to try to reduce the autoimmune attack against my thyroid.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I had some vivid dreams when I first started using it. I liked the dreams, but now they are gone.
I have had no other side effects.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I just took my full 1.5 mg last night. I did have some insomnia which is unusual, also after I took it I experienced a little fight or flight anxiety reaction.
Is that normal?
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
UP
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
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posted
definitelly didnt sleep well last night. And to think that the nutty LLMD wanted me on 3mg to start.
I know my body and how I react stronglly to meds now.
I think Im gonna take 1/2 the dose tonight.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
i was put on 4.5 mg as start dose. not good and was on narcotics.
pls make sure you are not on ANY other pain meds and LLMD knows all pain meds!!!
i ended up in ER, seizues, and with very ticked off body for next week!! didnt know could not be on opiods and LLMD should have IMO (and knew it was)
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
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posted
i think I responded to your thread, it didnt sound right.
no one wants to go to the ER~~~~~!!!!
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lymeHerx001
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posted
up
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lymeHerx001
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posted
gonna go with .75 mg tonight.
I cant do insomnia!
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lymeHerx001
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posted
Did .75 last night.
I slept alot better. I dont think it was because of the LDN, I also took a micro amount of Levaquin and that always tones things down.
In less pain today and more refreshed, belive it or not.
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lymeHerx001
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posted
I have to go to the dreaded LLMD today to check in on my blood work. The same one that screamed at me.
Now my legs after working all day are killing me and I could die.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
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posted
up with legit thread.
Did .75 again last night, not to many problems.
I hoping this will work out. Im gonna take .75 for another week and then up it to a full 1.5 mg
Cant even imagine taking 50mg!!
Why doesnt the FDA approve this for insurace. Idiots
Posts: 2905 | From New England | Registered: Sep 2004
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Well, 50 mg is for something completely different, and those people have a messed up brain in a totally different way than us anyhow.
I get mine from McGuff Compounding Pharmacy by mail order, and it's about $30 for 30 pills of 3 mg: if that's significantly cheaper than what you're paying, have your doctor call in a prescription to them at 877 444 1133
-------------------- Symptom Free!!! Thank you all!!!!
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I took my first dose last night about 1/2 hour before going to bed. I took 1.5 mg to start. I did sleep longer than usual, a little over 7 hours but other than that I haven't noticed anything different.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymeHerx001
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Member # 6215
posted
your right, I payed about 28 with shipping included for 30 1.5 mg.
lymeHerx001
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posted
Congradulations TerryK, Its new for the 2 of us!
Have it be known that I am sensitive to most medications to start off with. Thats why I start with small amounts.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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Member # 6215
posted
UPDATE!
Still getting insomnia from .75 mg. I started last Thursday so this would make it my 4th day. I think its still new to my system.
Looking for a turnaround soon@
Posts: 2905 | From New England | Registered: Sep 2004
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
There was an e-mail video from Mercola about how alpha lipoic acid (ALA) is good to take while you are taking LDN.
Naltrexone (generic name) is a pharmacologically active opioid antagonist, conventionally used to treat drug- and alcohol addiction - normally at doses of 50mg to 300mg. As such, it's been an FDA approved drug for over two decades.
However, researchers have found that at very low dosages (3 to 4.5 mg), naltrexone has immunomodulating properties that may be able to successfully treat cancer malignancies and a wide range of autoimmune diseases like rheumatoid arthritis, multiple sclerosis (MS), Parkinson's, fibromyalgia, and Crohn's disease, just to name a few.
As explained on the informative website www.lowdosenaltrexone.org, when you take LDN at bedtime -- which blocks your opioid receptors for a few hours in the middle of the night -- it is believed to up-regulate vital elements of your immune system by increasing your body's production of metenkephalin and endorphins (your natural opioids), hence improving immune function.
------
MY3BOYS- your doctor should have known better...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
PS - alpha lipoic acid (ALA) is strong stuff. Start out with a very small amount like 1/4 of a pill & work it up. A doctor told me this a long time ago.
I believe it can cross the blood brain barrier & chelate mercury.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymeHerx001
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posted
Im thinking I should start to feel an increase in endorphins, no?
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Rumigirl
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Member # 15091
posted
My LLMD said we should consider LDN next visit (I had thought about it before).
BUT I get frequent migraines (at least twice per week, sometimes daily) and other pain, and MUST take low-dose Vicodin (2.5 mg) each time, along with other meds, or I can't get out of the migraine/other pain. Would this mean I can't take LDN, or is the dose low enough that it would still work?
And what benefits have people had so far? (Maybe it's too soon for you guys to notice benefits).
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lymeHerx001
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posted
Im not sure if it will work with the Vicodin.
I know for me opiates never worked which makes me weary of this drug.
I actually am seing an increase in depression and less pleasure.
I think that its lowering my endorphins and they and my brain is not compensating.
I hope I start compensating soon@!
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lymeHerx001
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posted
up
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dmc
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posted
I asm amazed you get any reaction with such a low dose. The founder, Dr. Bahari was my doc. before finding out Lyme the cause of my "MS".
He had said anything lower than 2.0 doesn't do anything. Meaning doesn't block enough endorphines to promote the increase when the LDN wears of.
The slow release may cause a mess up.
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lymeHerx001
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Member # 6215
posted
Im chemically sensitive and react to most medications at low dosages now.
I was never like this before Biaxin triggered my Multiple Chemical Sensitivities and vertigo.
Yes its fast release.
When I took 1.5 I had a huge increase in heart rate and dizzyness when it hit.
I wasnt sure how I would react.
Now its just giving me insomnia.
My body doesnt follow the rules.
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D Bergy
Frequent Contributor (1K+ posts)
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posted
You do not actually have less Endorphins when using LDN. It blocks your brain from detecting them for maybe three hours. This causes your body to make more Endorphins than it would otherwise.
For some reason this boosts the immune response.
Increased depression could be the result of increased immune response. More immune response, more inflammation = more depression.
If you can quell the inflammation, the mood should change along with it.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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lymeHerx001
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posted
interesting
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lymeHerx001
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posted
quote:Originally posted by lymeHerx001: interesting
thanks I keep taking it
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lymeHerx001
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posted
Took about 1mg last night?
Terrible insomnia, Im 2 days away from the week mark and still cant take 1.5 mg
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lymeHerx001
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posted
Im believing Maria, I wont post again untill another week.
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posted
My husband has been taking 4.5 mg for about 5 months now. He had disrupted sleep for about two weeks and then things settled down.
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lymeHerx001
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posted
thank-you
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TerryK
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posted
I'm up to 2.5 mg. I take it right before I go to sleep. I've started waking up once during the night at about 2:30 AM. Sleep really well the rest of the night.
Prior to starting LDN I was waking up more often so this is good. I do notice that I have periods of irritability during the evening that I didn't have before. I also feel sleepy more often now.
Terry
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lymeHerx001
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posted
thats weird terry
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lymeHerx001
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posted
well its been 13 days, so far no difference.
I am still at under 1mg slowlly titrating up to 1.5mg
[ 05-27-2009, 10:30 PM: Message edited by: lymeHerx001 ]
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lymeHerx001
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posted
up
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lymeHerx001
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posted
1.5 mg last night, still insomnia.
Sorry for the blog!
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lymeHerx001
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posted
went back to half a capsule of 1.5 mg.
Cant seem to take more then that. Im sensitive like most people on this board.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Hi, I have been on LDN for almost a year now, (I am so thrilled to see the word about LDN getting out) got my doc to write it for the Fibro, don't think it will help with my thyroid, I don't test for the common autoimmune antibodies.
I started off on 3.0 mg for first month and went right to the 4.5 mg the second month.
I don't sleep to begin with - sleeping pill every night - you name it, I have tried it, natural, prescription etc. I think maybe the tumor is preventing my body from making melatonin etc.
Anyway I didn't sleep at all on LDN even with my sleeping pill, so I reverted and took it in the morning.
The group does not advocate this, but in my case the choice was take or not take -
It took almost a month for me to be sure I was getting results and when I went to the full 4.5 WOW is all I can say!!
My pain dropped by at least 75% for soft tissue and hip joints - it had gotten to the point where I could not lie on my right side at all....
Please do not give up, I tried night dosing 2 more times and had to keep going back to AM dosing, BUT a month ago I tried again and I am taking at night now!!
Since I already have sleep problems and usually don't go to bed till 2:00 am.......I stay up until I am almost falling over and then lie down, take the LDN then and hopefully fall asleep.
If I don't fall asleep fairly quickly after taking the LDN, then I will be awake for the night, but I have lived with this all my life, even as a child.
Most people do not have this problem, or it goes away during the first weeks.....good luck.
I also am hoping it might help shrink the tumor on my Pituitary - new MRI done 2 weeks ago today, am on phone with doc office as I type wondering what my results are........brain or no brain???
Does anyone think when they look at the MRI if someone might notice or see some of the things Lyme can do in our heads, I read something about using MRI to check on changes in the brain......again must see if I have one anymore.
And last, but not least I have two docs here in Melbourne Fl area that write for LDN.
Skips pharmacy seems to be who many use, last summer they were 25.00 I think for a 30 day supply. I have used Gideons in NY - 15.00 for a 30 day supply, I order at least 3 mo's at a time and it is still only 5.00 for shipping. My local compounding charged me 45.00 unfortunately.
Posts: 8 | From USA, Melbourne Beach Fl | Registered: May 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I have family who are benefiting from LDN.
I can not try it because you can not take it along with any narcotic pain killers and I am on sustained release every 8 hours.
I do have the idea in my hip pocket in case I find a way to get off the mscontin and then maybe I can use the LDN to help me as a kind of instead when my pain levels are down low enough.
THANKS for the information. I am glad to hear it helps so many . But it seems like not all as LymeHerx is having trouble tolerating it and I did not see any positive responses yet either. Hopefully soon.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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lymeHerx001
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posted
Thanks Sea Lady you can disregard my PM. You answered it here!
I might try AM dosing too.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
still having the dreaded insomnia, I cant take it much longer.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
quote:Originally posted by SeaLady: Hi, I have been on LDN for almost a year now, (I am so thrilled to see the word about LDN getting out) got my doc to write it for the Fibro, don't think it will help with my thyroid, I don't test for the common autoimmune antibodies.
I started off on 3.0 mg for first month and went right to the 4.5 mg the second month.
I don't sleep to begin with - sleeping pill every night - you name it, I have tried it, natural, prescription etc. I think maybe the tumor is preventing my body from making melatonin etc.
Anyway I didn't sleep at all on LDN even with my sleeping pill, so I reverted and took it in the morning.
The group does not advocate this, but in my case the choice was take or not take -
It took almost a month for me to be sure I was getting results and when I went to the full 4.5 WOW is all I can say!!
My pain dropped by at least 75% for soft tissue and hip joints - it had gotten to the point where I could not lie on my right side at all....
Please do not give up, I tried night dosing 2 more times and had to keep going back to AM dosing, BUT a month ago I tried again and I am taking at night now!!
Since I already have sleep problems and usually don't go to bed till 2:00 am.......I stay up until I am almost falling over and then lie down, take the LDN then and hopefully fall asleep.
If I don't fall asleep fairly quickly after taking the LDN, then I will be awake for the night, but I have lived with this all my life, even as a child.
Most people do not have this problem, or it goes away during the first weeks.....good luck.
I also am hoping it might help shrink the tumor on my Pituitary - new MRI done 2 weeks ago today, am on phone with doc office as I type wondering what my results are........brain or no brain???
Does anyone think when they look at the MRI if someone might notice or see some of the things Lyme can do in our heads, I read something about using MRI to check on changes in the brain......again must see if I have one anymore.
And last, but not least I have two docs here in Melbourne Fl area that write for LDN.
Skips pharmacy seems to be who many use, last summer they were 25.00 I think for a 30 day supply. I have used Gideons in NY - 15.00 for a 30 day supply, I order at least 3 mo's at a time and it is still only 5.00 for shipping. My local compounding charged me 45.00 unfortunately.
I sleep like that too! I take pills untill I just fall down. Then I hope to get good sleep.
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