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Dr. Bob is Robert Hsiung, MD,
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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.
Posted by casse on December 20, 2009, at 17:00:39
In reply to ldn for autoimmune, perhaps with depression?, posted by tealady on February 3, 2009, at 6:18:10
I tried LDN for treating depression and had mixed results. At first it seemed to help, but within days I started feeling worse as anxiety increased. There is some speculation that it sequesters in tissue in some people and that the accumulation causes constant blockade of endorphin production instead of the intermitent blockade which stimulates overcompensation.
A common complaint/side effect of naltrexone at the 50+ mg. used for opiate/alcohol dependence is anxiety. If it is sequestering in tissue even at a low dose, that would explain why I at first felt good on it, but then started feeling worse. Of course, this is speculative.
I was taking btw 1.5 -2.5 mg. One amazing result of taking it was that I didn't get the severe reaction to poison ivy that I usually experience every time I get near it (think being unrecognizable bc facial skin thickens and gets inflamed ). I mowed through fields of it this past summer while on LDN and never got more than a few blistery bumps. Amazing stuff.
The general concensus is that 1.5 ml is the minimally efficacious dose. That is not necessarily true, and in fact, some people claim to be having success starting at much lower doses (.25 ml ) and using LDN only every other or every third day. A few of these people are chemically sensitive.
I don't know if it's ok to post a link to another group site, so I wont, but there is a yahoo group which deals specifically with very low dose naltrexone. It's a relatively new group.
I'm going to start back on LDN after I give tianaptine a go. I know of someone else who uses them concurrently with wonderful results.
Posted by tea on December 27, 2009, at 20:17:22
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by casse on December 20, 2009, at 17:00:39
Thanks Casse (and Jimmyboy earlier and everyone!) for your feedback. I did trial ldn for a short while after I posted here,then stopped and i've just started again lately.. very tinry and building up to 1.5mg or so last night- really wiped today and a bit depressed and slept deeply 2nd half of night. I'm unuse nas I took some progesterone too and I suspect progesterone makes me wiped....
interested to hear to the very low dose yahoo group, I don't know I've laways posted links myself, I think they are allowed unless they are to some site selling prohibited drugs in some states of the US (though how you know what is prohibited or not specifically I don't know). , so I guess the yahoo groups would be OK as they don't sell anything? I'm not a moderator there though:)PS forgot password, forgot email .. couldnt figure out how to post without a new nick!
Posted by Phillipa on December 27, 2009, at 20:37:59
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by tea on December 27, 2009, at 20:17:22
Sure you can post links and so glad you did. Interesting stuff on that link. Phillipa
Posted by Phillipa on December 27, 2009, at 20:40:51
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by tea on December 27, 2009, at 20:17:22
Now the progesterone I'm on bioidentical creams of estrogren, progesterone, testosterone think good for bone health? As osteoporosis and doc wanted me on reclast Iv and the biophosphinates are horrible. What do you think of strotium with ca, mg, vita D3 & K? New supplement here called growbone.com. Take a look. Phillipa
Posted by tea on December 28, 2009, at 2:52:46
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by Phillipa on December 27, 2009, at 20:40:51
> Now the progesterone I'm on bioidentical creams of estrogren, progesterone, testosterone think good for bone health?
should be good.
I built up my bone density by hormones and exercise together with calcium and magnesium. I'm just borderline osteopenia now - I was worse in my 30's!)
I refuse to get any more bone scans as they do have dangerous amounts of radiation when compounded and I hadn't realised the danger- besides I just do everything I can and whatever the level is , It IS).Exercise is probably the most important factor together with the hormones and the minerals. Without the exercise bit nothing much will work:-) I forget now why but I went into the way it worked years ago. Also I tried carrying heany backpacks but that stuffed my knees , so dont do that one!
Sorry, since the car accident I haven't been able to research and my memory is poor but improving.
Just trying to concentrate on ldn for now (but I still need the female hormones unfortunately).
I trialled ldn back in March or April(just after I asked about it in this thread) and took until I had an opreration for suspected ovarian cancer (from scans).. But luckily there was nothing there when they opened me up:-) That was some panic and it sure made me realise I wanted to live!
As osteoporosis and doc wanted me on reclast Iv and the biophosphinates are horrible.I'm sorry I don't know anything about reclast IV , but I do agree on the bisphosphinates- I'd never take them no matter what, but I can't advise you of course;-)
What do you think of strotium with ca, mg, vita D3 & K? New supplement here called growbone.com. Take a look. Phillipa
I'll take a look one day when I get the energy and brainpower to understand it- however Ca, Mg, VitD3 work together and VitK is good for bone health. In Oz they are also pushing boron , (the ant poison). I noted they went thru this marketing phase in the US years ago.. Strotium would be a similar thing.
It's like this I guess. We do need all these minerals in trace amounts if they exist in the eart we would get some in our drinking water. However these days our drinking water is altered by the govtr (for "our" benefit of course), things like chlorine and fluoride are added and the water is filtered for bacteria and microorganisms etc but also the calcium , and probably magnesium and other minerals-iron definitely but probably all the trace minerals too are filtered to low levels. With Calcium is cause industry dont like limescale in their pipes, and iron stains the pools around here before they filtered it out..etc
So then we need to add back all the filtered out minerals. The trick is getting the correct balance which isn;t the same for everyone. Partly it depends on what you are used to where you and your ancestors grew up- the receptors are thought (by me and others) to have altered level s genetically to cope wiuth what the water contians in their environment.. move and you are in trouble! I sufferd from a severe lack of calcium and magnesium when I moved from Brisbane with "hard" water to Sydney and lost most of my teeth and developed the osteo over 15 years or so. My receptors were no doubt programmed for the hard water. O also got way too much iron in the water here (now its filtered), and the studpid docs just told me to take iron as I was pregnant...nothing about the calcium and magnesium which was LOW in the water here.. and I had all the side effects of too much iron for years until I figured it out.
Now I have just purchased a Mercola filter and , although it states it keeps at least some of the minerals via using Chloride to save on the carbon filters, I guess it has lowered the levels of all minerals even more than the water filtration by the water board has! I have needed to up my Calcium and magnesium a lot! (from once a month a so to once every 3 days or so)
So I figure any studies(without reading them) of any trace minerals where they deprive animals pof the trace mineral and then add it back in is always going to show the benefits of the trace mineral.. it's the amount though that is difficult to get right!
Pity the water board doesn't add back in the removed minerals , at least the ones mostly needed, and the trace elements up to certain levels if removed.(I realise some areas they do need to remove dangerous levels of some minerals)
But then people's pool water appearance and industries' pipes are way more important than people's health- or at least more obvious in effects!
Posted by tea on December 28, 2009, at 3:49:30
In reply to Re: ldn for autoimmune, perhaps with depression?, posted by Jimmyboy on February 4, 2009, at 10:21:32
I've been reading thru some old posts, like yours. It's funny how we all (me included) seem to be having similar reactions to ldn.. one that are not the same as those on the ldn forums. Like only tolerating a very low does, feeling good for a few days if taking intermittently and then needing to take another dose., feeling better when stop for a while. Also we all seem to report the terrific improvement in pain, the not quite normal the next day(kinda wiped0 etc.
wonder what we have in common? Its been many years since I've taken pdrugs or I'd blame those for altering my serotonin repceptors or other receptors, but surely after almost 10 years that's back to normal levels?
Initially, even at a very low dose I get a whopping headache9dependant on dose) and feel nausea, even the next day. That only lasts a couple pf days though..so I figure maybe its blockading longer than the suggested 4 hours. My sleep is disturbed- I just lie there feeling very depressed and worried and everyone has everything in for me etc,(actually it is scary the intensity of the depression or was it anxiety?so I advise knowing beforehand and I just refused to move out of bad or let myself do anything, just in case.. but maybe some movies to watch may help, something to distract?) but then in morning I'm sleeping more deeply than I ever have..and stay tired during the day. But after a while(days?) I do have this great energy levels and can do things I have not been able to do for many years, I also notice an immediate decrease in pain..way better tha ANY pain meds(ANY) or nurofen (NSAIDs)(anti-imfammatories), like pain is almost gone or even completely gone. This effect does last and I think ldn is epsonsible partly for recovery from the pain.. no more sciatic nerve pain for instance. But I also had extensive accpuncture which I didnt combine with ldn as it works on endorphins the same way supposedly. I do respond well to accupuncture. My jay pain is almost gone, my ears have almost stopped ringing.. but it could be just a coincidence and would have happened anyway without the ldn.Why are we all so similar?
Posted by Phillipa on December 28, 2009, at 19:40:12
In reply to Funny how we all have similar reactions to ldn and » Jimmyboy, posted by tea on December 28, 2009, at 3:49:30
I'm sorry about the accident didn't know. Love Phillipa
This is the end of the thread.
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