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» LymeNet Flash » Questions and Discussion » Medical Questions » LDN - How is it going for you?

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Author Topic: LDN - How is it going for you?
BoxerMom
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I started last month at .5 mg. I increased by .5 mg every 3-4 days. Maybe some slight herxing. Mostly, it cleared my brain fog and gave me sustained energy.

I take it at lunch because insomnia is my worst and most debilitating symptom. I can't let anything interfere with my sleep.

I was cruising along just fine, then I hit 3 mg and felt like I was on speed!! Not fun and I did not sleep that night.

I stopped it for a week, then another week because I forgot I was taking it. Typical.

So now I'm ramping up again. I am at 2 mg and will hold there for a while.

No herxing this time. No effects at all until I hit 2 mg. Again, better energy and mental clarity.

Overall I like it. If these benefits continue, I will love it.

How are others doing?

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 - Must...find...BRAIN!!!

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kgg
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Thank you for this post and the feedback on your experience.

My young adult son was started on this recently. When the dose was increased to 3.5mg he seemed to not do as well. It was dropped back to 3.0mg and now I am not sure whether I should go lower or whether he is herxing. So hard to tell what is what sometimes.

From the reading I have done on LDN, it is very individual on what dose is helpful. IMHO, if you have found 2.0mg makes you feel better, stay there.

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birdie67
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I am taking 3.0mg and to be honest, I don't really notice anything at all from it. No good or bad to report. I've been taking it for a month now.

Glad to hear it's making you feel better.

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WPinVA
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I'm sorry I can't be of any help, but thank you for posting your experience. I really want to try this again - I started then stopped - can't remember why now.

More energy and less brain fog sounds heavenly!

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Lady11
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I ramped up to 4.5 with no improvements really
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Lady11
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I ramped up to 4.5 with no improvements really
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Lady11
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I ramped up to 4.5 with no improvements really
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Keebler
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-
I had reactions to it (although not side-effects per se). The difference in "reactions" and "side-effects" is that with "reactions" I think of it as this is just not working for MY body, this point in time, perhaps due to METHOD used.

I very slowly ramped up from 1.5 mg and from the first day, I was much worse with symptoms that I had not had in years, very strong.

I was on the suspension with almond oil and I suspect that the hydrocloric acid component (it IS Naproxone HCL, afterall) is what so irritated my mouth, tough, throat, etc. My ears also hurt tremendously and urinary issues intensified.

Three weeks, working up gradually was all I could tolerate. My tongue was so swollen with usual ulcers under it much worse.

Now, it may be that capsules would be better than the oral suspension.

I may try it later and start over with capsules but the capsules are so much more expensive in low dose and not sure I could precisely use empty capsules for the right dose on my own if I got the regular dose.

I sure don't want this to touch my mouth again.

I've never been able to tolerate much acid, even citrus. I do think, for me, the HCL form is what caused the issues, though I can't be certain.

Still, the pain level all over my body intensified terribly with even low dose. I don't think the HCL "part" of this would do that but he actual nalproxone effects.

I really hesitate trying this again.
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GretaM
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I am starting this today.

I sure hope it doesn't keep me awake.

The pharmacist said it would make me drowsy.

Here's hoping.

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BoxerMom
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I would not take your first dose at bedtime. A common side effect is insomnia. Pharmacists often don't understand how meds affect us.

Start with a low dose. It's OK to ramp up slowly with LDN.

--------------------
 - Must...find...BRAIN!!!

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CD57
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i think this is very individual. I kept a journal of my 3 month journey with it. I started at 1.5, didn't notice much, so stupidly jumped up to 3mg and stayed there. I got flares of anxiety and lymph nodes that had to be drained every hour. It was ridiculous. No benefit although it was "doing something".

I may try again with the very slow ramp. And now they are thinking 4.5 isn't the magic dose, that it is very individual for all of us.

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GretaM
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Thanks Very Much Boxermom and CD57!

I am sure glad you both posted.

I was told to take it at bedtime (which I won't do now, that's for sure)!

AND was given 3mg capsules.

Which I will divide in half and start at 1.5mg.

Thanks for the tips!

My lymphnodes are already so swollen, and insomnia and nightmares are already bad, so thanks again for the tips!
[bow]

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CD57
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Way to go Greta.

It seems like the lower doses are working better for Lyme patients

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Fuel1212
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Hey All,

I have tried LDN multiple times for years. When I first tried it, I swore I was going insane. Insomnia and jitterness all day.. I also ached all over. This was over 2 years ago.

In summary, I have tried this at all dosages for a few years. I have not been on it for about 3weeks with no issues. I take it before bed and don't have any issues with sleep. I actually have been falling asleep after dinner, which is really odd for me. All in all I think it is helping. I originally started it to try to increase my testosterone.

Thanks
Fuel

--------------------
IgM- 31,34,39,83-93 IND
IgM- 41+

IgG- 31,34,39,83-93 IND
IgG- 41++

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GretaM
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Thanks Fuel [Smile] Great feedback
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GretaM
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4 days in and I am loving it so far.

No side effects to report, and I am sleeping better.

Mon Tues will be the big test as those are normally horrible days.

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dbpei
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That is great, Greta!! I hope this continues for you. I need to keep LDN in my back pocket to inquire about at future LLMD visits.
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lax mom
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So glad it's helping Greta!

It really helps my pain. I used to get weird, pressure type head/neck aches. They are gone while I'm on LDN.

I forget that I even have them until I have to go off LDN briefly (ex. when I had a surgery and was going to need pain killers). Then, those headaches came right back.

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nefferdun
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Great news BoxerMom and Greta. I love LDN. The first time I tried it, I had miserable urinary problems that I thought was a weird side effect.

It turned out the LDN was causing a herx as my body fought the PR I didn't even know I had. When I tested positive for PR and began treatment, I re-started LDN and had no problem with it.

I have been on it over one and a half years now. I used to buy the pills from Mexico and mix it myself. That made it very easy to regulate exactly how much I was getting and work up slowly. Now I have a script.

I rarely get sick with a cold or virus when I am on LDN and when I do, it is extremely mild and passes quickly.

When I first started, it raised me out of a depression. I was very chatty with everyone I met. I became more motivated, even started painting again.

I think I have since been infected with something new. I am not majorly sick but I need to find out what it is and get something to go after it. So it feels like it is not working as well right now. I hope the pharmacist is mixing it correctly.

THe LDN also calmed down a thyroid flare I was having. I had vicious insomnia, irritation verging on rage and although I was eating over 2000 calories a day, I lost 20 pounds. By the time I got to 3 mg, I felt close to normal. I had a normal body temperature for the first time in my life! It had always been subnormal (Hashimoto's).

I take it in the morning because insomnia is a curse to me. Dr. Zagon (not an LLMD) of Penn State University has studied LDN for over two decades and he says they have done studies which prove it does not matter what time of day you take it.

He said the theory that you make more endorphins in the night is not true. Yet, there are people out there that insist it has to be taken at night, which is terrible for the people that get insomnia and quit.

My son was diagnosed with diabetes 3 years ago, which turned out to be type one that has the onset in adults. It is slower to kill all the beta cells but most people are completely insulin dependent within two years.

My son started LDN about a year after his diagnoses and has remained stable ever since. This is a miracle. Our type two diabetic cat gets 10 units of insulin. My son only needs 10-16.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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lax mom
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nefferdun: I take mine in the AM too. I couldn't get over the nightmares when I took it at night.

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Ellen101
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I tried it numerous times and each time after the honeymoon period I felt worse.
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CD57
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Does anyone know which cytokines are effected by LDN? "Cytokine faucet shut off" per dr H book?
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GretaM
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So far so good.

Legs are sore today, but I was walking around all day on cold cement.

Will see if they wake me up, or if the LDN tones the nerves down tonight.

The nightmares aren't too far from my usual nightmares. Just more yelling and even more odd than usual.

Did have one of those sleep-paralysis nightmares, but I get those once in a while, so can't blame the LDN on it.

I hope the honeymoon phase never ends. [Smile]

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