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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 21 of 21. This is the beginning of the thread.
Posted by morgan miller on February 2, 2012, at 2:37:59
Hey Scott, sorry for the late response. Here's a quick run down. I will come back for a more thorough explaination of what's been going on later.
Side effects/negatives so far:
-sleep disturbance for the first 3 to 4 days after initial dosing and dose titration. I was having some trouble falling aslee and I was waking early
-Feeling a little flat at times
-Feeling mild agitation at timesBenefits felt so far:
-less fasciculation and soreness in calf muscles. I'm able to flex calves most of the time without them cramping up-they are still sore though
-I am a bit more flat than I'd like so far, but, I also feel more grounded and less manic
-Sleep now seems to be improving beyond what it was before LDN. I do have very vivid and somewhat wild dreams, which I always had as a child and enjoyed, so I really do not mind this.
-I seem to be able to read better and stay focused easier with certain tasks. This is not a steady thing yet, but nothing really seems to be steady quite yet on LDN.
-Overall, muscles and tendons that I've had issues with are more functional and less stiff than before starting LDN.I will be going up to 2.5 mg tonight, and I will stay there for a week. I really think this treatment will take some time. I would love to get a mood boost from it as well. Who knows, maybe it will do some things that will improve the efficacy of Zoloft. I really just want to feel better in general-more energy, better sleep, less muscle stiffness, and eventually restored cognitive function(this sometimes takes as long as 6 months to a year before becoming obvious to the patient).
I guess that was pretty detailed. I'm just tired and up later than I want to be. Took LDN 20 mins ago and feel like passing out now. I am not taking melatonin periodically anymore because of LDN. We will see. I have I hopes for this stuff.
Morgan
Posted by SLS on February 2, 2012, at 7:55:54
In reply to LDN Update, posted by morgan miller on February 2, 2012, at 2:37:59
Hi Morgan.
> I will be going up to 2.5 mg tonight,
Oh. I thought you had already been taking the commonly-used 4.5 mg dosage. Hopefully, you are currently underdosed and will feel better at a higher dosage..
> I really think this treatment will take some time.
What source of information did you use to come to this conclusion?
- Scott
Posted by ed_uk2010 on February 2, 2012, at 8:30:35
In reply to LDN Update, posted by morgan miller on February 2, 2012, at 2:37:59
Morgan,
How are you measuring the dose? Are you using a version made by a compounding pharmacy?
Posted by Phillipa on February 2, 2012, at 9:47:10
In reply to Re: LDN Update, posted by ed_uk2010 on February 2, 2012, at 8:30:35
Morgan you still working at the same place? I hope the LDN works for you. Phillipa
Posted by Morgan Miller on February 2, 2012, at 13:10:19
In reply to Re: LDN Update, posted by SLS on February 2, 2012, at 7:55:54
Ive been on both mindandmuscle.net and longecity.org reading people's experiences with LDN. It appears that it may be a good idea for many trying LDN to start at 1 mg and titrate up to anywhere from 3 to 4.5 to make the adjustment period easier. Also, as BB said before, some have success with it at as low as 1 or 2 mg.
Posted by Morgan Miller on February 2, 2012, at 13:23:19
In reply to Re: LDN Update, posted by SLS on February 2, 2012, at 7:55:54
I personally know someone who one day noticed significant cognitive caution improvement one year after starting LDN. If you read some of the reports out there, you will start to notice a trend of people saying they got their minds back 3 to 4 to 6 months after starting treatment. They did feel better as a result of LDN much sooner though.
Some people do get a more immediate mood and energy boosts and it continues to last for years. Others, for whatever reasons, may need time for their bodies to reach
that point of homeostasis where they really start to notice
the benefits.I forgot to mention there are some doctors that recommend the lower dose start up. And there was a small study where very few dropped out because the participants were started at a lowwe dose.
Hey Ed, long time. My psychiatrist very willingly prescribed it to me and I had her call a compounding pharmacy near me. I have 2 mg capsules right now and will be going up to 3 in a week or so.
Posted by Morgan Miller on February 2, 2012, at 13:23:29
In reply to Re: LDN Update, posted by SLS on February 2, 2012, at 7:55:54
I personally know someone who one day noticed significant cognitive caution improvement one year after starting LDN. If you read some of the reports out there, you will start to notice a trend of people saying they got their minds back 3 to 4 to 6 months after starting treatment. They did feel better as a result of LDN much sooner though.
Some people do get a more immediate mood and energy boosts and it continues to last for years. Others, for whatever reasons, may need time for their bodies to reach
that point of homeostasis where they really start to notice
the benefits.I forgot to mention there are some doctors that recommend the lower dose start up. And there was a small study where very few dropped out because the participants were started at a lowwe dose.
Hey Ed, long time. My psychiatrist very willingly prescribed it to me and I had her call a compounding pharmacy near me. I have 2 mg capsules right now and will be going up to 3 in a week or so.
Posted by Morgan Miller on February 2, 2012, at 13:25:57
In reply to Re: LDN Update, posted by Phillipa on February 2, 2012, at 9:47:10
> Morgan you still working at the same place? I hope the LDN works for you. Phillipa
Hey Phillipa, I am at the same place, and im working a few days a week waiting tables at a small restaurant. Thank you, I hope it works too. Are you considering trying it?
Posted by SLS on February 2, 2012, at 15:52:27
In reply to Re: LDN Update, posted by Morgan Miller on February 2, 2012, at 13:23:19
> My psychiatrist very willingly prescribed it to me and I had her call a compounding pharmacy near me. I have 2 mg capsules right now and will be going up to 3 in a week or so.
How much did the compounded naltrexone cost you?
What are the side effects that occur when people start at higher dosages?
I hope the LDN treatment helps you. Will you remain on it for 6 months or longer if a robust improvement doesn't occur?
I'm glad that you are able to maintain employment. I would like to return to work myself. Some people don't understand why I should want to. 22 years is a long time to be separated from society. I would like to rejoin it by working alongside others and building up a social life. The money would be nice, but it is a secondary consideration.
- Scott
Posted by morgan miller on February 3, 2012, at 1:07:13
In reply to Re: LDN Update » Morgan Miller, posted by SLS on February 2, 2012, at 15:52:27
Hey Scott,
LDN costs about 6 bucks, and the compounding fee is 40-really not all that bad.
I think some of the side effects I reported are common at higher doses, they just may be more severe, leading to higher drop out rates. A steady rise from a lower dose reduces the severity of side effects and makes for a much smoother transition. Many start at 3 or 4.5 and just notice feeling better, without any noticeable sides.
If I do not at least get relief from some of my symptoms, without the passing of noticeable side effects, I will not wait 6 months. But, If I start to have more energy consistently, I sleep better consistently, the calve muscle function improves drastically, and my mind at least feels somewhat clearer, and I hardly have any or no sides-it will be well worth taking even if I never feel like my mind has healed from past damage and cognitive function returns closer to how it used to be. Thing is, if all the above listed does happen, my mind will heal some and my cognition will improve simply through feeling better, functioning better, and being able to read and exercise regularly.
I hear ya on the working thing. Working has totally helped me regain confidence and get back some of that social life I was used to. Now I just need to get back to really feeling and functioning more like my old self so I can build a social life that was better than the one I had before. I was immature in ways and did not allow myself to maintain quality relationships with quality people like I should have been.
I really hope you get back to working soon Scott. Would you consider trying LDN to hopefully get a mood and energy boost, and, get your mind back to functioning more like it used to?
Morgan
Posted by SLS on February 3, 2012, at 7:11:45
In reply to Re: LDN Update, posted by morgan miller on February 3, 2012, at 1:07:13
> I really hope you get back to working soon Scott. Would you consider trying LDN to hopefully get a mood and energy boost, and, get your mind back to functioning more like it used to?
Yes.
:-)
- Scott
Posted by morgan miller on February 3, 2012, at 15:37:13
In reply to Re: LDN Update » morgan miller, posted by SLS on February 3, 2012, at 7:11:45
Well, I will keep you posted Scott, maybe I can inspire you to try it-I think it may be worth the wait.
We can only try to stay positive and keep fighting, as you already know.
Hope the weekend is good to you :)
Morgan
Posted by morgan miller on February 3, 2012, at 21:44:53
In reply to Re: LDN Update, posted by morgan miller on February 3, 2012, at 15:37:13
Started feeling pretty good half way through the day today-mind felt stimulated, I felt relaxed, I had that "good" energy itch in me, and my libido was enhanced. Hopefully this is a sign of good things to come. Ooops, forgot to mention one of the most important improvements I noticed today-my body felt sooo much looser and relaxed than usual. We will see...
Posted by Laney on February 6, 2012, at 19:53:07
In reply to Re: LDN Update, posted by morgan miller on February 3, 2012, at 21:44:53
Can you order LDN off the internet?
Laney
Posted by morgan miller on February 7, 2012, at 0:22:25
In reply to Re: LDN Update, posted by Laney on February 6, 2012, at 19:53:07
Hey Laney..Yes, you can order it online. You will just need to disolve the 50 mg tablet in a certain amount of water and put it in a dropper bottle, with one drop being maybe like 1 mg. You can find easy directions for how to do this online.
Posted by morgan miller on February 7, 2012, at 0:30:16
In reply to Re: LDN Update, posted by morgan miller on February 3, 2012, at 21:44:53
Well, the last several days have been a little more rough that I would like. Things are complicated by the fact that I had been pretty sick and had to finally get on the Z pack to try to kill of the infection that was whooping my arsh.
I've been feeling flatter than I would like lately. I do believe this side effect will be transient. I've been up to 3 mg for 5 days now. Today was better than the previous days, but I'm still not feeling the way I would like to.
I'm continuing to notice relief in my muscles, especially my calves. I am also sleeping pretty soundly, unfortunately a little too soundly. I slept 13 hours last night! Maybe I am not getting the good deep sleep within 8 hours I need, so I'm sleeping much longer.
I do believe there are changes taking place. Unfortunately, I think I have to go through some rough spots while my immune system function is being influenced to change for the better. I read that this may be the case with some people, when they experience feeling worse and having a very brief period where their immune system seems to be compromised.
I'm sticking this one out. I have a pretty high tolerance for feeling bad, and LDN has not come close yet to testing my tolerance.
I will try to stop in a few times a week to keep everyone who is interested posted.
Morgan
Posted by SLS on February 7, 2012, at 4:36:54
In reply to Re: LDN Update, posted by morgan miller on February 7, 2012, at 0:30:16
Some people are extremely vulnerable to having a physical illness exacerbate their depression. You may need to take this into consideration as you evaluate your treatment.
I'm glad you have a high tolerance for discomfort. I would like to see your giving LDN treatment every opportunity of working.
- Scott
Posted by morgan miller on February 7, 2012, at 12:05:24
In reply to Re: LDN Update » morgan miller, posted by SLS on February 7, 2012, at 4:36:54
Thanks Scott,
I am definitely vulnerable to physical issues/illness excacerbating depression and anxiety. My injuries from working for a moving company during my summers off of the elementary school gig I had were part of what sent me spinning when I had my first massive mixed episode(I had a few in my 20s, just not as bad).
Well, today I'm feeling pretty good. I only have a mildly annoying headache, and that is I am sure largely due to the clinching and grinding I do at night. I really need to get a mouth guard.
I really hope this is a sign of things to come. Evergy levels, mental clarity, ability to read, feeling of wellness upon waking, muscle function, and mood are all greatly improved upon the first 4 days on 3 mg. I feel like I can breathe today. I want to move and do things. I'm motivated and excited to get out of the house and get some things done before I work at 5. I do think getting over being so sick is helping. Being sick was definitely confounding beginning my trial on LDN.
The true test will of course be if, hopefully when, I feel like I do now for entire days on end, with very few periods of feeling all of the other uncomfortable inhibitory symptoms I've been experiencing over the last few years.
Posted by SLS on February 7, 2012, at 13:09:53
In reply to Re: LDN Update, posted by morgan miller on February 7, 2012, at 12:05:24
Hi Morgan.
After reading your descriptions of the things you are now experiencing with LDN, I am becoming increasingly optimistic for you. Your discipline to persist with drug trials despite discomfort and questionable therapeutic results is admirable and will be intergral to your success in treating your illness.
- Scott
Posted by morgan miller on February 7, 2012, at 23:57:15
In reply to Re: LDN Update » morgan miller, posted by SLS on February 7, 2012, at 13:09:53
Thank you again Scott. I did start to become slightly agitated later this afternoon and found myself struggling for a bit at work. As the night progressed though, I seemed to be reaching more of a baseline function, and started to feel better. I feel fine right now, other than an annoying headache. I'm pretty sure LDN is suppressing my appetite to some extent, which is fine by me-I often eat too much at night out of boredom. I think if I had made it to the gym today I would have felt better than I did. I definitely had an itch to get a workout in that I needed to scratch, but I had to run off to work after finishing laundry.
Again, I hope to simply start feeling and functioning better. If I find my brain starts working in ways that it used to-creativity back, ability to read and retain back, and overall mental accuity comes back-3,4,5,6 months from now, this would be a HUGE bonus. I know I will improve in those areas simply by not being fatigued and getting back to dancing, exercising, and whatever other activities the symptoms I've been experiencing have been keeping me from doing regularly.
Posted by morgan miller on February 8, 2012, at 16:49:40
In reply to Re: LDN Update, posted by morgan miller on February 7, 2012, at 23:57:15
Today has been pretty good, with the exception being sleeping far longer than I would like and waking up feeling a little more out of it than I would like. I think I need to be careful about when I take LDN, I took it too late last night. My mood and energy levels have been pretty good. The most notably thing I experienced today was my mind being activated in a way that I wanted to read and could read with much more ease than usual.
This is the end of the thread.
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