Shown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by tealady on February 3, 2009, at 6:18:10
Just wondered if anyone has tried or considered ldn. I'm thinking about it.
Its mostly just being tried of autoimmune diseases like MS but some with hashimotos or autoimmune thryoid are trying it, and I know there have been some on babble who have been on thryoid meds for depression. perhaps having an autoimmune component to their depression or even perhaps to bipolar?
Here's a link to where I stored a heap of links, especially utube links.
http://tealady-health.blog.co.uk/2009/01/30/ldn-for-autoimmune-disease-5478952/It's a big leap to consider this, but I think it's intersting even for what it is being tried for. I was wondering if anyone had any opinions. IF it works, and that;s a big if, it may even help with depression ? bipolar? if related to some strange autoimmune thing. caused who knows by todays polluted environment of amalgams, pollution, plastics, pesticides in food, preservatives etc. lowering one's immunity?
But that's putting it into the miracle pill category!..so I'm only posting for interest only.
Posted by Phillipa on February 3, 2009, at 11:03:50
In reply to ldn for autoimmune, perhaps with depression?, posted by tealady on February 3, 2009, at 6:18:10
That was also a topic on meds board a while back. Love Phillipa
Posted by tealady on February 3, 2009, at 13:42:53
In reply to Re: ldn for autoimmune, perhaps with depression? » tealady, posted by Phillipa on February 3, 2009, at 11:03:50
> That was also a topic on meds board a while back. Love Phillipa
Thanks, I'll try to search for it.
Jan
Posted by Maria3667 on February 3, 2009, at 14:34:12
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by tealady on February 3, 2009, at 13:42:53
Hi Tealady,
I tried LDN a while back for Sjogren's Syndrome (auto-immune disease). I can't really say if it did anything for depression or not. None the worse, nor the better.
For Sjogren's: it worsent the dry mouth, but improved dry eye...
The dose I used was 1.5 mg sublingually. Within a few days I started to become jittery, could feel the sweat running down my back, then heart palpitations, etc. Had my blood checked and turned out that LDN made my T3 thyroid level jump way above the norm. I cut back on thyroid meds but could not get the hyper symptoms under control. So I quit after 4 weeks.
It was an interesting experiment though!
I might try again later, at an even lower dose and with less thyroid meds.
Love,
Maria> > That was also a topic on meds board a while back. Love Phillipa
> Thanks, I'll try to search for it.
> Jan
>
>
Posted by tealady on February 3, 2009, at 15:59:30
In reply to Re: ldn for autoimmune, perhaps with depression? » tealady, posted by Maria3667 on February 3, 2009, at 14:34:12
Wow, thanks for the feedback Maria.
That Scottish doc(in the utube links) seems to be saying even 1mg is a good dose, and yes, I've read you should cut back your thyroid meds.
This is so intersting, it looks like , at least short term, it may help.Best wishes,
Jan> Hi Tealady,
>
> I tried LDN a while back for Sjogren's Syndrome (auto-immune disease). I can't really say if it did anything for depression or not. None the worse, nor the better.
>
> For Sjogren's: it worsent the dry mouth, but improved dry eye...
>
> The dose I used was 1.5 mg sublingually. Within a few days I started to become jittery, could feel the sweat running down my back, then heart palpitations, etc. Had my blood checked and turned out that LDN made my T3 thyroid level jump way above the norm. I cut back on thyroid meds but could not get the hyper symptoms under control. So I quit after 4 weeks.
>
> It was an interesting experiment though!
>
> I might try again later, at an even lower dose and with less thyroid meds.
>
> Love,
> Maria
>
> > > That was also a topic on meds board a while back. Love Phillipa
> > Thanks, I'll try to search for it.
> > Jan
> >
> >
>
>
Posted by tealady on February 3, 2009, at 16:01:32
In reply to Re: ldn for autoimmune, perhaps with depression? » tealady, posted by Phillipa on February 3, 2009, at 11:03:50
> That was also a topic on meds board a while back. Love Phillipa
Thanks Phillipa,
I found some and added a link on my blog. I wonder how jimmyboy is doing? I babblemailed him,but just wondering if he is still around on the boards somewhere or whether it fixed him right up and he;s out there enjoying life or..
Best wishes,
Jan
Posted by tealady on February 3, 2009, at 16:13:01
In reply to Re: ldn for autoimmune, perhaps with depression? » tealady, posted by Phillipa on February 3, 2009, at 11:03:50
correction re jimmyboy- I just found some posts on the med board so forget my previous comment on not seeing any posts lately , I'm a bit slow at present... Still be interetsed to find out if ldn kept helping though
Posted by Phillipa on February 3, 2009, at 21:12:58
In reply to Re: ldn for autoimmune, perhaps with depression? » Phillipa, posted by tealady on February 3, 2009, at 16:13:01
Is his babblemail on might babblemail him? Oh to all We share the same name Jan. Tealady how can you decrease thyroid meds if TSH is too high to suit the endo. Been so unstable from almost too low to too high in last year and it's hasimotos? Thank Jan Phillipa
Posted by tealady on February 4, 2009, at 3:47:29
In reply to Re: ldn for autoimmune, perhaps with depression? » tealady, posted by Phillipa on February 3, 2009, at 21:12:58
sorry, I don't understand your question about being too high to suit endo? A TSH a 5 would suit most endos! (sadly).
To get results to suit endo in general re tsh,
1. take test first thing in morning (TSH is higher),
2. don't take any thryoid meds beforehand (TSH higher, thryoid hormones lower)
3. take blood tests fasting (TSH also higher, and fT3 lower),
4. to really make sure (if results are just to please endo) don't take any meds for almost 24 hrs before?
Is this what you are asking, if it's something I worte jnust go back tothe thread and point it out..I'm really tired and pushing myself so i don't have the energy to try to work it out..sorry
Posted by Jimmyboy on February 4, 2009, at 10:21:32
In reply to Re: ldn for autoimmune, perhaps with depression? » Phillipa, posted by tealady on February 4, 2009, at 3:47:29
Hi Tealady,
I just wanted to give you an update on my experience as well as with a few people I know who are taking ldn for various things.
First of all, a caveat, like many people on this particular board, i would say that I am not a "normal" responder ro many medications so keep that in mind. I tend to be pretty sensitive to whatever I am taking. With that being said..
I am still taking LDN, about 1.5-3 mgs 2-3 times/wk. The night I take it is always rough b/c it messes up my sleep but this supposedly goes away if you are taking it regularly. The reason I don't take it everyday is simply that I think I get TOO many endorphins if I dose it that way. Everyday dosing makes me feel a bit shaky and sort of spacy, so splitting up the dose has been the way for me to handle that. generally the day after I take it, I don't feel so great ( maybe b.c of lack of sleep the night before?) But the next few days after that I generally feel pretty great, definitely above baseline and it seems to gradually drop back down to baseline over the next few days. (sort of like a reverse hangover) - at that point I take another dose.
I am assuming any positives I have had are due to re-sensitizing (increasing density) my mu opiate receptors from the temporary blockade and not b/c a favorable change in my immune system response ( evening out TH1 to TH2 response which occurs on continuous LDN treatment - AKA why it works for MS and various other diseases).
So it makes sense in a way..Mu opiate receptor agonism a big trigger for "pleasure". if you can get more of these (upregulate)/make them more sensitive by a temporary blockade then you are going to be temporarily more likely to have natural endorphins activate them and cause pleasure. anyway, this is just my opinion.
As for others I know that LDn causes them to consistantly be more alert and awake in the morning early afternoon, but cause a "siesta effect" where they feel like they need to take a nap around 4pm or so.
Hope this helps.
Posted by tealady on February 4, 2009, at 15:03:26
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by Jimmyboy on February 4, 2009, at 10:21:32
yes, thanks a great help.
I do suspect though that your dosing possibly may have an immune response(or some other unknown) component to why it is working though due to the half life of endorphins being shorter than the time you are feeling a positive effect.
The endoprhin "high" at least in me doesn't last that long either.
I only did a few lectures on immunology at Uni , and can't grasp that TH1, TH2 stuff you mentioned. I just googled it and it seems to be an area of debate? My brain is still a bit s-l-o-w I think I'll give up on that one. I will keep a watch out on it.I've read of many and know myself that I seem to crave endorphins to a greater extent than "normal".
Thanks again,
You give me hope,
Jan
Posted by tealady on February 4, 2009, at 15:33:37
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by Jimmyboy on February 4, 2009, at 10:21:32
Hi again Jimmyboy,
OOps, Apologies. Ignore my last comment on endorphins. I just followed up one of the links in my post.It looks like endorphins do last as long as you say..I guess they just seem to get used up pretty fast in me!
Also some there are no longer taking it at night due to disturbed sleep as you had and are fine in the day. There was a change of thought of what was happening, but again.. don't ask me to explain as I still don't quite have my old brain function back :-)
Maybe worthwhile researching & considering if it may work as effectively taken during the day for you?http://www.ahsta.com/LinkClick.aspx?fileticket=NHtaMiGeHgg%3d&tabid=175&mid=686
"sexual intercourse, eating chocolate and exercise. Because the effects of endorphins are diminished during the opiate receptor blockade, Dr. Bihari originally proposed that LDN be taken at night.
LDN Timeframe
Studies show that the effects of endogenous opiates last from 24-72 hours. Therefore, taking LDN at night is not necessary. A 4.5 mg dose of naltrexone blocks the opiate receptor for about 6 hours. After this temporary blockade, endogenous opiate production increases dramatically.
Increased Endogenous Opiates
Its suspected that the primary effects of LDN are related to the increased production of endogenous opiates. Endogenous opiates include endorphins, enkephalins, and metenkephalins. These compounds act as neurotransmitters and as cytokines. Cytokines are chemicals that modulate the immune response"best wishes and thanks,
Jan
Posted by Phillipa on February 4, 2009, at 20:13:34
In reply to Re: ldn for autoimmune, perhaps with depression? » Phillipa, posted by tealady on February 4, 2009, at 3:47:29
Hi just reading mail and in my case the endo wants my TSH at l or l.5. So he does not want the TSH to be even a five. Now on the LDN so not good for hasi's? No goiter, nothing just the blood work. Love Jan/ Phillipa
Posted by tealady on February 5, 2009, at 4:25:15
In reply to Re: ldn for autoimmune, perhaps with depression? » tealady, posted by Phillipa on February 4, 2009, at 20:13:34
> Hi just reading mail and in my case the endo wants my TSH at l or l.5. So he does not want the TSH to be even a five. Now on the LDN so not good for hashi's? No goiter, nothing just the blood work. Love Jan/ Phillipa
That's good. Just consistently test the way I mentioned , so you get as high a no. as possible, and more importantly..so you have a comparative result over time. TSH can vary a LOT during the day..in some people from 1 to 5 !(highest earliest in the day). It doesn't for me though.
It's good if your TSH can vary a lot in that it shows your pituitary (or at least that part) is healthy and working as it should!
I have only heard ldn is good for hashi, so far I only know one person on it for hashi, and she managed to double her TSH ( which was very low).
I also know other females on 75mcg per day T4, which they think is a tad low for them. I'm on approx. 90mcgT4 + approx. 1/2 g Armour(THYROID USP). I also can never quite work out the right level, but my last TSH test also was over 5:-)One of my cousins is on 75mcgT4 and she has fibromyalgia.. probably from too low a level, it's individual .. that's about the lowest correct dose for females I think, so probably a good place to start of from. http://tealady-health.blog.co.uk/2009/01/30/ldn-for-autoimmune-disease-5478952/
The ahsta forum is about autoimmune thyroid, but all kinds not just hashi. Elaine has written a book on ldn.Let me know how you go on ldn please?
There is a link to a lady on ldn with hashi in that post on one of the ahsta links.Keep me updated with how you go on ldn please?
Also where did you source it from?Good luck,
Jan
Posted by Phillipa on February 5, 2009, at 19:46:54
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by tealady on February 5, 2009, at 4:25:15
Tealady no don't have LDN guess I wasn't clear. Just that endo wants the numbers between l and l.5. Just on now 75mcg of synthroid. Jan/Phillipa ps will check out that link . Thanks so much.
Posted by Jimmyboy on February 5, 2009, at 21:14:16
In reply to Re: ldn for autoimmune, perhaps with depression? » tealady, posted by Phillipa on February 5, 2009, at 19:46:54
Philippa, are you considering taking LDN or something? I was not clear on that.
Posted by Phillipa on February 6, 2009, at 20:26:12
In reply to Re: ldn for autoimmune, perhaps with depression? » Phillipa, posted by Jimmyboy on February 5, 2009, at 21:14:16
Jimmyboy think the whole conversation started about unstable thyroid. So far only on synthroid. Love Phillipa
Posted by tealady on February 7, 2009, at 2:06:40
In reply to Re: ldn for autoimmune, perhaps with depression? » Jimmyboy, posted by Phillipa on February 6, 2009, at 20:26:12
> Jimmyboy think the whole conversation started about unstable thyroid. So far only on synthroid. Love Phillipa
Sorry Phillipa , I was trying to ask for input from ldn users, sigh :-) Just if anyone out there is using ldn and if so, how they were going..also if they would like to consider using ldn and some links, as it seemeds it may help many on here with the endorphin kick and perhaps as those who finally get diagnosed with an autoimmune problem always always have been prescribed antiD's for depression over a decade and many have been labelled bipolar too.. I think it may have been undected antidoies playing up, although it could be more than one thing of course!
Anyway just thought it may help some people on here, particularly maybe if they had other symptoms like headaches or fatigue at times.Still hoping to discuss ldn and have anyone consider or using it let me know what they think, or anyone give me their opinion on it.
Thanks
Janypu kindly pointed out to me it had been discussed on the medical board so I had a look and saw Jimmyboy was taking it and thought you were also.
Posted by PurpleSprout on April 12, 2009, at 19:15:09
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by tealady on February 5, 2009, at 4:25:15
I wanted ask how long JimmyBoy has been on the 2x a week LDN.
I've been on some dosage or another of LDN for two weeks now. I worked up to 3mg at night and no longer have the insomnia, but I'm super irritable during the day. The irritability wears off (and good mood kicks in) right about when I'm ready to take my next dosage.
While I have some autoimmune issues (Celiac), I was mainly interested in taking LDN for its mood effects. Clearly, a crappy mood and increased irritability is not exactly what I had in mind. (Ideally, I would like to give 3mg a shot for a good month to see if it helps the autoimmune stuff, but I'm pretty busy now and I can't afford severe depression/anxiety/irritability now, even if it is a "sign" of impending immune modulation. It's worth noting, though, that some of my celiac symptoms seem to be improving....)
In any case, I would be interested in hearing more details about your experience with the intermittent LDN dosing.
This is the end of the thread.
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