![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 17 to 41 of 71. Go back in thread:
Posted by Green Willow on December 28, 2009, at 22:22:26
In reply to Re: LDN Low Dose Naltrexone Questions, posted by tea on December 28, 2009, at 3:22:58
I have been taking ldn since early May '09 with great results. It has stopped my RA and spondy and at 3 mg. my health is back to 100% for which I am very happy. However, I do have this deep depressive disorder thingy going on, and I had no idea ldn might be aggrevating that. The other thing that I experience is that I sleep so soundly and well in the morning that it is about impossible to pull myself out of bed before 11 a.m. Sometimes I have strange dreams, usually they are actually bad dreams, but nothing to the extent that would make me want to go off this stuff as the benefit to my auto-immune is unbelievably good. Green Willow
Posted by tea on December 29, 2009, at 5:06:00
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Green Willow on December 28, 2009, at 22:22:26
> I have been taking ldn since early May '09 with great results. It has stopped my RA and spondy and at 3 mg. my health is back to 100% for which I am very happy. However, I do have this deep depressive disorder thingy going on, and I had no idea ldn might be aggrevating that. The other thing that I experience is that I sleep so soundly and well in the morning that it is about impossible to pull myself out of bed before 11 a.m. Sometimes I have strange dreams, usually they are actually bad dreams, but nothing to the extent that would make me want to go off this stuff as the benefit to my auto-immune is unbelievably good. Green Willow
I've been reading/listening to ldn most of the day. It seems a lot of pople are successful at lower than 3mg dose ..like 1.5mg or even 1mg over a longer period of time. I know you started lower and worked up to 3mg, but was that because it wan't effective until 3mg? Do you think it would work as well at say 2.75mg say? or even 2.5mg. One doc was saying we should all aim for the minimal effective does and I agree... not that I've worked it our myself!
Also some are taking once very other day or even once every 3 days better than daily as, I guess, they need that time off for the bounce back (maybe they have a slower metabolism or even slower liver function). Maybe being a bit hypothryoid means I have a slower metabolism.
I've been searching around tonight and found that very low dose forum mentioned on here. Here's the link if you are interested
http://health.groups.yahoo.com/group/Very_Low_Dose_Naltrexone/message/525 This post is showing that some who have said it stopped working have taken les often or lowered dose and it started working well again.
They are also saying depression is a starting side effect.
http://health.groups.yahoo.com/group/Very_Low_Dose_Naltrexone/Back to more reading. Thanks for giving me the confidence to continue.
Posted by Green Willow on December 29, 2009, at 20:51:47
In reply to Re: LDN Low Dose Naltrexone Questions » Green Willow, posted by tea on December 29, 2009, at 5:06:00
Thanks for cluing me in to the very-ldn group. I may be at the point where scaling back would be useful. I did a little partying last week and didn't take ldn the nights I had alcohol. I went about 4 nights in a row without taking any ldn and my RA did not bother at all, so I believe it must be building up or have some residual effects. During those 4 days, I did notice short bursts of the pounding heart but nothing that lasted long. By the way, I have been dxd with atrial fib.
Posted by Phillipa on December 29, 2009, at 21:41:32
In reply to Re: LDN Low Dose Naltrexone Questions » tea, posted by Green Willow on December 29, 2009, at 20:51:47
That's not good are you taking something for it med wise? Love Phillipa
Posted by Green Willow on December 30, 2009, at 21:21:36
In reply to Re: LDN Low Dose Naltrexone Questions » Green Willow, posted by Phillipa on December 29, 2009, at 21:41:32
No, tried a few meds they prescribed and didn't like the effects. At this point it is rare that I have arrhythmias so I don't worry about it, and when I do have them I can usually trace it back to something such as medication that brought on the arrhythmia. About 7 years ago my heart was going wild all the time, but seldom anymore. GW
Posted by casse on December 31, 2009, at 14:08:14
In reply to Re: LDN Low Dose Naltrexone Questions » Green Willow, posted by tea on December 29, 2009, at 5:06:00
I started back on VLDN last week. I took .25 mg every other day for 4 days, then skipped an extra day before taking only .125 mg (appx.) last night.
The extra day I skipped I felt better than I have in months. But it was sunny for the first time in weeks too....
I seem to feel worse the morning after I use LDN and a bit better the second day as a rule. I decided to try it at the even lower dose every other day and see if that helps. I didn't feel too bad this morning, so maybe the extremely low dose is more appropriate for me.
I have some vivid dreaming and difficulty sleeping if I stay up too long after taking it, but I can't say that it has really disrupted my sleep much. But I also take 50-100 mg of Trazodone every night. My problem is really more with feeling more anxiety symptoms than depression. And the anxiety aggrivates depression for me.
I definitely feel that the LDN is causing an increase in endorphin production, but I'm at a loss as to why this doesn't feel good to me. I never liked the way hydrocodone made me feel either. I didn't feel the wonderful euphoria I read about, it was a hard, icky feeling.
When I'm taking LDN it's hard for me to sleep in, I wake up and feel better if I get up and move. If I don't get up I just feel more and more agitated.
It's so interesting how differently people react to it.
Posted by Elroy on December 31, 2009, at 16:31:59
In reply to LDN Low Dose Naltrexone Questions, posted by Bob on October 5, 2009, at 22:45:53
> I might be behind the curve here, but I recently came across some literature espousing Low Dose Naltrexone for, among other things, fibromyalgia symptoms. The prevailing recommendations suggest taking it some time between 10pm and 2am before going to bed. The theory is that it inhibits endogenous opiate receptors during the time of peak activity during sleep (I guess) thus raising the available levels of endorphins available. The usual doses for things like addiction problems is 50mg, but the LDN regimen calls for building up the dose by 1.5mg increments to a total of only 4.5mg.
>
> Anyway, I'm wondering if anyone here has any experience with LDN. I got the prescription for 1.5mg 3 times per day and took the first pill two nights ago. The next day I woke up refreshed and felt unusually calm and relaxed, yet energetic and focused. All my fibro type aches, pains and muscle problems seemed to evaporate and I was well enough to be able to clean and arrange a significant portion of the house. It was a day like I hadn't had in a long time. Last night I took another single 1.5mg pill and slept like a baby. Today I woke up and was irritated and tired. As the day progressed I felt somewhat weak, had some episodes of sweatiness, and had periods of depression. As good as the first day was, it has all seemed to have evaporated.
>
> Is LDN something that can build over time, or is this second day a bad sign, and an indicator that this is not a good thing to pursue? I am confounded by the good first day and how quicky it seemed to disappear.
>
> Bob
>
LDN is not really designed as a primary anti-depression or anti-anxiety agents... though many of its users HAVE reported very positive results in both of those categories as they apply to their individual cases.For some great informational sites and info see the following:
http://www.lowdosenaltrexone.org/http://www.lowdosenaltrexone.org/index.htm
http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
http://www.lowdosenaltrexone.org/ldn_and_ms.htm
http://www.lowdosenaltrexone.org/ldn_and_ai.htmhttp://en.wikipedia.org/wiki/Low_dose_naltrexone
http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html
http://www.emaxhealth.com/1035/39/29168/more-magic-bullet-low-dose-naltrexone.html
http://www.ldnresearchtrustfiles.co.uk/docs/2009.pdf
(A 47-page Booklet of 47 Case Studies of the use of LDN... the booklet, once downloaded, can be printed out))https://ldndatabase.dabbledb.com/page/cancer-researchcopy/ddXxiaHj#
http://www.webspawner.com/users/introtoldn/index.html
These (below) are YouTube video clips on YouTube that are about LDN Therapy that you might find interesting......
http://www.youtube.com/watch?v=DAZ1fQKdOC8&feature=related (very good)
http://www.youtube.com/watch?v=FRI5f69N2eo&feature=related
http://www.youtube.com/watch?v=55562cy9fgQ&feature=related
http://www.youtube.com/watch?v=LT6J0M5GTQ4&feature=related
http://www.youtube.com/watch?v=CVpjsDK0LPA
And ----Tea...
You are taking doses WAY too wrong - WAT too imprecise.
If you take too little, LDN will NOT work...
If you take too much, you reverse the effects that you are seeking....
The way that you are taking it is way too much "rough guessing".
This IS the correct formula to follow EXACTLY) to make a 1 mg dose of LDN (so then you can try 2 mg or 3 mg or 4mg) - 1.5mg is the lowest that ANY of the expert doctors have found to work...
Anyone having "positive effects" on less than that is experiencing the "Placebo Effect":
http://www.webspawner.com/users/howtoobtainldn/index.html
QUOTE:
AllDayChemist (India) http://www.alldaychemist.com/single_product_detail.php?productid=1704&isProductID=156/1(The River Pharmacy buys their Naltrexone tablets from India and then resells them. At the present time, Naltrexone is manufactured by a number of different companies... *)
Once you have a supply of 50 mg Naltrexone tablets, you can convert them as needed to LDN. To do so, fill a graduated cylinder with 50 ml of distilled water (unlike tap or spring water, distilled water contains no impurities that could potentially react with and thus reduce Naltrexone's effectiveness). Pour the water from the graduate into a 4 oz amber glass jar with a tight-fitting lid. Then add a 50 mg Naltrexone tablet. The tablet will mostly dissolve in about five to ten minutes. Since not all of the tablet is soluble in water, instead of yielding a clear solution, the result will be a cloudy suspension. It must be shaken each time before use to evenly disperse all the undissolved particles. One ml of the (shaken) suspension will contain one mg of Naltrexone. Use a graduated baby medicine dropper to measure out the dose you need.
Once a drug passes from a solid to a liquid state, its shelf life can decrease dramatically. Therefore, do not make more than 50 ml of liquid Naltrexone at a time, store it in the refrigerator, and do not keep it for more than a month. The fresher the preparation, the better. Be sure to shake the liquid LDN well before using, and keep it from direct exposure to sunlight.
The medicine dropper should be available in the infant/baby section of your local pharmacy. If you ask politely and are lucky, the pharmacist may (as a gesture of good will) give you an empty 4 oz amber glass jar. Distilled water is sold by most pharmacies, as well as by supermarkets, hardware stores, and convenience stores.
(END QUOTE)One precaution to the above. After initially dissolving the tablet in the specified amount of distilled water and shake it thoroughly to insure the Naltrexone is fully dissolved and disperesed in the solution, do NOT shake it anymore (as in prior to using it). The sediment - particles in the solution when you shake it - are binder substance compounds and several manufacturers use a dietary form of iron powder as one of their binding agent components and that can adversely affect Lupus patients and others with similarly related disorders.
From the Yahoo Group on LDN Therapy:
QUOTE:
Subject: [lowdosenaltrexone] Naltrexone and solutionsFor those of you that prepare naltrexone from 50 mg tablets dissolved in water- I have a strong recommendation for you: do not shake the solution before use. Shake when you prepare it, but once the tablet is dissolved, there is no need to suspend the insoluble portions of the tablet.
This is fairly important for those with Crohn's, but possibly other diseases as well. If the tablet contains iron oxide (the ones we buy do), the iron is very hard on the system. Naltrexone is very soluble; it will already be in the solution- it does NOT settle out. But removing the iron oxide may help those with Crohn's.
I am an analytical chemist, and have discovered this by trial-and-error. Iron supplementation is strongly discouraged for those on the SCD- and there is a very good reason for that. The reason the body is iron-deficient is because it believes it is combating an infection. If the iron as supplements is withheld, one can consume iron-rich foods like red meat, eggs, liver, etc. If the iron is added- particularly as the iron oxide in naltrexone tablets- the result is pain and bleeding, even in very small amounts.
Again- I'm a chemist by training. If you make your own solution, PLEASE do not consume the insoluble sediment. There is absolutely no need to shake the solution right before you consume it- only when you're preparing it for the first time- as the naltrexone is already dissolved.
I hope this helps someone somewhere. Good luck, and best wishes.
END QUOTE(*) The pills you are taking - even though manufactured in India, ALL of them are destined to also be sold under American brand names - and consist of pure Naltrexone Hcl USP, plus whatever used binders - it is the binders that do no dissolve fully in the distilled water, and it must be DISTILLED water... for the formula to work correctly (only as certain mineral content of some tap waters may have compounds which release cause the Naltrexone to dissolve too slowly... it should dump into your system in a rush ... and in that matter, the DIY formula is actually better than the pharmacy compounded tablets.
Posted by tea on January 1, 2010, at 3:30:29
In reply to Re: LDN Low Dose Naltrexone Questions » tea, posted by casse on December 31, 2009, at 14:08:14
It sure is interesting to hear how you are going on ldn Casse, and you are different, although lots are reporting that anxiety. Love it if you could keep chiming in occasionally with how you are going.
Best, tea
Posted by casse on January 1, 2010, at 11:57:27
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on December 31, 2009, at 16:31:59
> This IS the correct formula to follow EXACTLY) to make a 1 mg dose of LDN (so then you can try 2 mg or 3 mg or 4mg) - 1.5mg is the lowest that ANY of the expert doctors have found work...
Actually Dr. Bob Lawrence, a Welsh phyisican with MS uses doses lower than 1 mg for some of his patients. Here's an interview with him regarding the use of LDN in his practice. There are some wonderful interviews with doctors and activists for LDN.
http://www.blogtalkradio.com/mary-boyle-bradley/2009/09/29/the-mary-bradley-show
Posted by Elroy on January 2, 2010, at 16:32:10
In reply to Re: LDN Low Dose Naltrexone Questions » Elroy, posted by casse on January 1, 2010, at 11:57:27
> > This IS the correct formula to follow EXACTLY) to make a 1 mg dose of LDN (so then you can try 2 mg or 3 mg or 4mg) - 1.5mg is the lowest that ANY of the expert doctors have found work...
>
> Actually Dr. Bob Lawrence, a Welsh phyisican with MS uses doses lower than 1 mg for some of his patients. Here's an interview with him regarding the use of LDN in his practice. There are some wonderful interviews with doctors and activists for LDN.
>
> http://www.blogtalkradio.com/mary-boyle-bradley/2009/09/29/the-mary-bradley-show
NOTED (from your reply): "....uses doses lower than 1 mg for SOME of his patients.... " So apparently uses regular doses in MOST of the others....Sorry, but experts ovder here, including doctor who invented Naltrexone and then formulated the LDNTherapy - and another specialist who has passed even that imminent doctor in LDN Therapy expertise (see the book) insist that doses at LESS that 1.5 mg will NOT cause the body to halt the Endorphin secretion process... and THAT i8s the key to the entire curative process.
I am not here to argue about it... I have read two major books on LDN Therapy and several PubMed articles (etc., etc.) and am going to trust them over some likely placebo effects anecdotal responses by a handful of patients from ONE doctor over there.
As a famous statesman once said, "You, madam do indeed have the right to your own opinion... but you do NOT have the right to your own FACTS".
Posted by tea on January 2, 2010, at 22:26:15
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on December 31, 2009, at 16:31:59
>
>
> Tea...
>
> You are taking doses WAY too wrong - WAT too imprecise.
>
> If you take too little, LDN will NOT work...
>
> If you take too much, you reverse the effects that you are seeking....
>
> The way that you are taking it is way too much "rough guessing".
>
> This IS the correct formula to follow EXACTLY) to make a 1 mg dose of LDN (so then you can try 2 mg or 3 mg or 4mg) - 1.5mg is the lowest that ANY of the expert doctors have found to work...
>
...
>
> One precaution to the above. After initially dissolving the tablet in the specified amount of distilled water and shake it thoroughly to insure the Naltrexone is fully dissolved and disperesed in the solution, do NOT shake it anymore (as in prior to using it). The sediment - particles in the solution when you shake it - are binder substance compounds and several manufacturers use a dietary form of iron powder as one of their binding agent components and that can adversely affect Lupus patients and others with similarly related disorders.
>
> From the Yahoo Group on LDN Therapy:
>
> QUOTE:
> Subject: [lowdosenaltrexone] Naltrexone and solutions
>
> For those of you that prepare naltrexone from 50 mg tablets dissolved in water- I have a strong recommendation for you: do not shake the solution before use. Shake when you prepare it, but once the tablet is dissolved, there is no need to suspend the insoluble portions of the tablet.
>
> This is fairly important for those with Crohn's, but possibly other diseases as well. If the tablet contains iron oxide (the ones we buy do), the iron is very hard on the system. Naltrexone is very soluble; it will already be in the solution- it does NOT settle out. But removing the iron oxide may help those with Crohn's.
>
> I am an analytical chemist, and have discovered this by trial-and-error. Iron supplementation is strongly discouraged for those on the SCD- and there is a very good reason for that. The reason the body is iron-deficient is because it believes it is combating an infection. If the iron as supplements is withheld, one can consume iron-rich foods like red meat, eggs, liver, etc. If the iron is added- particularly as the iron oxide in naltrexone tablets- the result is pain and bleeding, even in very small amounts.
>
> Again- I'm a chemist by training. If you make your own solution, PLEASE do not consume the insoluble sediment. There is absolutely no need to shake the solution right before you consume it- only when you're preparing it for the first time- as the naltrexone is already dissolved.
>
> I hope this helps someone somewhere. Good luck, and best wishes.
> END QUOTE
>
> (*) The pills you are taking - even though manufactured in India, ALL of them are destined to also be sold under American brand names - and consist of pure Naltrexone Hcl USP, plus whatever used binders - it is the binders that do no dissolve fully in the distilled water, and it must be DISTILLED water... for the formula to work correctly (only as certain mineral content of some tap waters may have compounds which release cause the Naltrexone to dissolve too slowly... it should dump into your system in a rush ... and in that matter, the DIY formula is actually better than the pharmacy compounded tablets.
>
>Thanks for that on the fillers in the ldn from India being insoluble.
very helpful andf supportive info!
I knew mine were not fully soluble, just as you say, but everywhere I was reading on the web I could find people were saying they were completely soluble and they got a clear solution. No matter what I tried I didn't (mentioned in previous post). I was considering switching the source. I tried dissolving in alcohol, water, vinegar (acid), warm to cold water(wasn't sure if too much heat would alter the naltrexone). Seemed to me from the chemical formula, as you say, naltrexone should be soluble.
I will try again and filter the solution.
Beats me jow one person stated they get their ldn from India and they make a clear solution with it though! That also makes all the rest of their testimony a bit suss unfortunately.Re the minimal effective dose, or if or if not there exists a threshold for ldn effectiveness.
I don't want to argue as we are all entitled as you say to our differing opinions, hopefully all, as yours and many others are based on relatively extensive reading and listening and following experts "opinions". That's all we can do.
Personaly mine also differs from yours but where and if there exists a threshold level I couldn't say with my limited experience.. even in myself!
I would just like you to consider perhaps ldn working like a "runner's high".. perhaps it does partly and perhaps not but it's only as a comparator. Most people and experts in training will say you need to run so far and so often for thsi "high" to kick in. Individual runners will have their own "levels" it kicks in. Some poeple just don't seem to experience it, or can't exercise enough to get a full blown one. But I belive that everyone does benefit from walking and running , even at less than the amounts that are stated to be required for this high or even to obtain fitness beneifts.
I think it has to do with the condition of the individual as well as many other factors. I myself feel better even if I walk a little than not at all. I think there is perhaps not a threshold black/white but a gradual grey beginning with just one step being better than nothing.. however to feel the full optimal benefits that requires more. I suspect ldn is similar, and some may just have to start out at a lower dose and work up to their optimal.. which, if in poor condition, may possibly be lower than 3mg. I think one factor would have to be the level of their receptors, which may be more than usually downregulated, in which case less would produce a an equivalent percentage blocked.
I don't understand how ldn works, and can't find it clearly written anywhere so far. I have studied the immune system at uni at a basic level though, and will continue to try and fathom out some acceptable "theory" at least for myself.
Although I couldn't say how ldn precisely works, I do think people can obtain some benefits at suboptimal(lower)doses though- as in running or any physical activity, and these benefits may make all the difference in allowing them to obtain more in other ways. Eg low dose ldn may allow them to exercise more without getting tired or in pain..allowing a build up from the exercise together wirth the ldn being additive, even synergistic. I think it's a mistake to just consider one thing alone.
Also I don't think you require (or even if) a total receptor blockout happens(it's more percentage blocked I would have thought)? I haven't come across any animal research where they have examined the receptors for that assumption to be made?
Hope we can agree to disagree:) and thanks for your help on the India ldn, much appreciated. Great for an expert on chemistry to help out.
Kind regards,
Jan
PS I know depression is not something ldn is designed to treat.. why I think it may help some on here who ALSO have other symptoms such as fatigue or pain and other symptoms , concomittent with their depression is a long story.. based on my own story as well as numerous others I have read :) If you have depression/anxiety and nothing else I too doubt ldn would help.
I know there is a belief in medicine that depresson/anxiety can cause these other symptoms like fatigue. This "belief" is aided by the treatment(like anti D's) also benefitting the other symptoms.
For me, this should not rule out the possibility of another common cause.. like an undiscovered low level immune problem or similar which may be the cause of the depression, as well as the other symptoms.
I believe I have in my lifetime experienced depression and anxiety which were not linked to anything else as well as having later in life at least an undiagnosed autoimmune thyroid problem which caused the fatigue etc and made me "depressed"..and also responded to an extent to antiD's, more so initially (first few years).
It seems to me that this later autoimmune problem may have been able to be resolved with ldn if caught early enough, if ldn works as the promise of it seem to imply. I therefore thought, for some, if they also have other problems (as many on here seem to), it may be worthwhile them considering looking at ldn. Hope this makes sense.
And thanks again for your help with the solubility.
Posted by Elroy on January 4, 2010, at 14:45:31
In reply to Re: LDN Low Dose Naltrexone Questions, posted by tea on January 2, 2010, at 22:26:15
> >
> >
> > Tea...
> >
> > You are taking doses WAY too wrong - WAT too imprecise.
> >
> > If you take too little, LDN will NOT work...
> >
> > If you take too much, you reverse the effects that you are seeking....
> >
> > The way that you are taking it is way too much "rough guessing".
> >
> > This IS the correct formula to follow EXACTLY) to make a 1 mg dose of LDN (so then you can try 2 mg or 3 mg or 4mg) - 1.5mg is the lowest that ANY of the expert doctors have found to work...
> >
> ...
> >
> > One precaution to the above. After initially dissolving the tablet in the specified amount of distilled water and shake it thoroughly to insure the Naltrexone is fully dissolved and disperesed in the solution, do NOT shake it anymore (as in prior to using it). The sediment - particles in the solution when you shake it - are binder substance compounds and several manufacturers use a dietary form of iron powder as one of their binding agent components and that can adversely affect Lupus patients and others with similarly related disorders.
> >
> > From the Yahoo Group on LDN Therapy:
> >
> > QUOTE:
> > Subject: [lowdosenaltrexone] Naltrexone and solutions
> >
> > For those of you that prepare naltrexone from 50 mg tablets dissolved in water- I have a strong recommendation for you: do not shake the solution before use. Shake when you prepare it, but once the tablet is dissolved, there is no need to suspend the insoluble portions of the tablet.
> >
> > This is fairly important for those with Crohn's, but possibly other diseases as well. If the tablet contains iron oxide (the ones we buy do), the iron is very hard on the system. Naltrexone is very soluble; it will already be in the solution- it does NOT settle out. But removing the iron oxide may help those with Crohn's.
> >
> > I am an analytical chemist, and have discovered this by trial-and-error. Iron supplementation is strongly discouraged for those on the SCD- and there is a very good reason for that. The reason the body is iron-deficient is because it believes it is combating an infection. If the iron as supplements is withheld, one can consume iron-rich foods like red meat, eggs, liver, etc. If the iron is added- particularly as the iron oxide in naltrexone tablets- the result is pain and bleeding, even in very small amounts.
> >
> > Again- I'm a chemist by training. If you make your own solution, PLEASE do not consume the insoluble sediment. There is absolutely no need to shake the solution right before you consume it- only when you're preparing it for the first time- as the naltrexone is already dissolved.
> >
> > I hope this helps someone somewhere. Good luck, and best wishes.
> > END QUOTE
> >
> > (*) The pills you are taking - even though manufactured in India, ALL of them are destined to also be sold under American brand names - and consist of pure Naltrexone Hcl USP, plus whatever used binders - it is the binders that do no dissolve fully in the distilled water, and it must be DISTILLED water... for the formula to work correctly (only as certain mineral content of some tap waters may have compounds which release cause the Naltrexone to dissolve too slowly... it should dump into your system in a rush ... and in that matter, the DIY formula is actually better than the pharmacy compounded tablets.
> >
> >
>
>
>
> Thanks for that on the fillers in the ldn from India being insoluble.
> very helpful andf supportive info!
> I knew mine were not fully soluble, just as you say, but everywhere I was reading on the web I could find people were saying they were completely soluble and they got a clear solution. No matter what I tried I didn't (mentioned in previous post). I was considering switching the source. I tried dissolving in alcohol, water, vinegar (acid), warm to cold water(wasn't sure if too much heat would alter the naltrexone). Seemed to me from the chemical formula, as you say, naltrexone should be soluble.
> I will try again and filter the solution.
> Beats me jow one person stated they get their ldn from India and they make a clear solution with it though! That also makes all the rest of their testimony a bit suss unfortunately.
>
> Re the minimal effective dose, or if or if not there exists a threshold for ldn effectiveness.
> I don't want to argue as we are all entitled as you say to our differing opinions, hopefully all, as yours and many others are based on relatively extensive reading and listening and following experts "opinions". That's all we can do.
> Personaly mine also differs from yours but where and if there exists a threshold level I couldn't say with my limited experience.. even in myself!
> I would just like you to consider perhaps ldn working like a "runner's high".. perhaps it does partly and perhaps not but it's only as a comparator. Most people and experts in training will say you need to run so far and so often for thsi "high" to kick in. Individual runners will have their own "levels" it kicks in. Some poeple just don't seem to experience it, or can't exercise enough to get a full blown one. But I belive that everyone does benefit from walking and running , even at less than the amounts that are stated to be required for this high or even to obtain fitness beneifts.
> I think it has to do with the condition of the individual as well as many other factors. I myself feel better even if I walk a little than not at all. I think there is perhaps not a threshold black/white but a gradual grey beginning with just one step being better than nothing.. however to feel the full optimal benefits that requires more. I suspect ldn is similar, and some may just have to start out at a lower dose and work up to their optimal.. which, if in poor condition, may possibly be lower than 3mg. I think one factor would have to be the level of their receptors, which may be more than usually downregulated, in which case less would produce a an equivalent percentage blocked.
> I don't understand how ldn works, and can't find it clearly written anywhere so far. I have studied the immune system at uni at a basic level though, and will continue to try and fathom out some acceptable "theory" at least for myself.
> Although I couldn't say how ldn precisely works, I do think people can obtain some benefits at suboptimal(lower)doses though- as in running or any physical activity, and these benefits may make all the difference in allowing them to obtain more in other ways. Eg low dose ldn may allow them to exercise more without getting tired or in pain..allowing a build up from the exercise together wirth the ldn being additive, even synergistic. I think it's a mistake to just consider one thing alone.
> Also I don't think you require (or even if) a total receptor blockout happens(it's more percentage blocked I would have thought)? I haven't come across any animal research where they have examined the receptors for that assumption to be made?
> Hope we can agree to disagree:) and thanks for your help on the India ldn, much appreciated. Great for an expert on chemistry to help out.
> Kind regards,
> Jan
> PS I know depression is not something ldn is designed to treat.. why I think it may help some on here who ALSO have other symptoms such as fatigue or pain and other symptoms , concomittent with their depression is a long story.. based on my own story as well as numerous others I have read :) If you have depression/anxiety and nothing else I too doubt ldn would help.
> I know there is a belief in medicine that depresson/anxiety can cause these other symptoms like fatigue. This "belief" is aided by the treatment(like anti D's) also benefitting the other symptoms.
> For me, this should not rule out the possibility of another common cause.. like an undiscovered low level immune problem or similar which may be the cause of the depression, as well as the other symptoms.
> I believe I have in my lifetime experienced depression and anxiety which were not linked to anything else as well as having later in life at least an undiagnosed autoimmune thyroid problem which caused the fatigue etc and made me "depressed"..and also responded to an extent to antiD's, more so initially (first few years).
> It seems to me that this later autoimmune problem may have been able to be resolved with ldn if caught early enough, if ldn works as the promise of it seem to imply. I therefore thought, for some, if they also have other problems (as many on here seem to), it may be worthwhile them considering looking at ldn. Hope this makes sense.
> And thanks again for your help with the solubility.***********************************************
Yes.
Perfect sense.
My point exactly.
If you are depressed or have anxiety due to an illness or disorder (I, for example, had super elevated hypercortisol-induced anxiety ... a very unique and rare form of Pseudo Cushing's to be precise - ended up in a special study at NIH Hospital in 12/2005). The severe anxiety (and severe insomnia and severe tinnitus and severe peripheral neuropathy pains and total hypogonadism, etc., etc., etc. wsere actually being CAUSED by the hypercortisolism. The supoer elevated hypercortisolism also greatly diluted and compromised my immune system. But I had NO anxiety condition. There was nothing going on in my life that caused ANY anxiety - and this all came out of no where (symtoms all hit over a 2 - 3 week period.
Following NIH, their recommended regimen immediately began working very positively on my hypercortisol problem and within a couple months I felt great (anxiety, insomnia both completely gone and other symptoms reduced by 50% or better - and continuing to slowly drop as my cortisol levels also slowly dropped. Had that procession continued I would be near cleared up completely by now (in my estimation).
But in July 208 I got a Respiratory Infection that was repeatedly tested by first my PCP and then by 2 specialists (who all kept running the same tests and getting negative answers and who all declined to run a fungal infection test.
After six months I was so sick that I threatened to sign myself into the hospital (had I gone to the ER, I would have been immediately admitted). He then decided, that, yews, maybe we should run a fungal infection test. That test process took 4 weeks because it takes the fungal cultures much longer to "mature".
And sure enough I had a (now)massive fungal infection (2 strains). One that had gone undiagnosed (for lack of a very simple "sputum test"). He panicked and put me on a very, very strong anti-fungal medication and set me up for 6 weeks later for a full-scale Bronchoscopy (operating room, fully knocked out, etc, as in addition to regular processes they were also going to take close to 25 tissue samples for biopsy.
Two weeks later he knew that the fungal infection was completely gone but that there was a ton of inflammation throughout the lungs still (but because of the hypercortisol problem couldn't utilize and prednisone or cortisone, etc. inhalers - but he put me on one that he assured me was free of any "artificial cortisol" type ingredients). Another five weeks later (2-days shy of 4 weeks exactly), I am at my Cushing's doctor's office and he gives me the bad new (this being May of 2009) that for the first time since 1/2006 my cortisol levels (24-hr UFCs) had gone UP instead of steadily down. In fact it had increased by 46%. As we went through the medications that I was on (I had also since developed a never-before-experienced rise in resting BP and Pulse rates), he exploded when he found out about the inhaler (it was actually a very strong form of a cortisone-based inhaler and I had been on it for about 5 months).
Then he saw the anti-fungal medication and that I had been on it roughly three months constantly at maximum dose. He then exploded even more at that point. This is apparently a very potent anti-fungal and you are supposed to take in in a 7 - 10 day cycle (which is normally strong enough to knock out anything). If by chance you DO need a 2nd doising, you are supposed to take like a week off for your kidneys.liver to recover and then do a 2nd cycle. Very, very rarely is a third dosing needed (again, after a 7 - 10 day recovery break).
And here I am on this medication for just shy of a full three months non-stop. And now my BP / Pulse levels are elevated to the edge of the "Cautionary" and "Bad" ranges and slowly continuing to climb. So I go to my PCP to get a referral to a Hypertension doctor. instead of doing so, he puts me on three DIFFERENT BP medications (all beta blockers) and yet a different medication(also a beta blocker) for Pulse reduction. Immediately I go into the mode of "Extreme Difficulty in Urinating (i.e., both in starting a stream and being VERY painful --- my PCP insists that side effect is NOT a side effect of any of those meds but its listed right in the warning pamphlets that they give you with the meds and also listed prominently on drugdigest.com). About two weeks later I began getting strong but intermittent pains in the "right flank area" (i.e., the area around the right kidney - only covering an area about the size of a dinner plate). The pains gradually increase in frequency until they are constant... and then start increasing in intensity. He then takes me off of the three BPs, but puts med on one single (and strong dose) beta blocker for the BP... and doubles my dosage for the Pulse reducing medication (even though it was doing its job just fine). For about 3 days there was some slight relief ion the "Difficulty Urinating" aspect, but it then gradually returned backto full strength.And the flank pain got to the point of being extremely painful constantly (other than late, late evening it was subsiding - which was - along with when it first started - caused me to believe it was being caused by the BP / Pulse medications.
So I got a referral to a Kidney / Hypertension specialist. He was not only shocked at the whole story, but especially so at the BP /Pulse medication regimens (and hinted very strongly thast he agreed with me that it was likely the cause of the problem - whatever it was.... but you know how doctors are. One is never going to come out and openly accuse another one. I found it interesting that he took me off both the BP & Pulse meds and started doing a series of advanced kidney testing procedures. So far, the most part of two days in Outpatient doing advanced kidney testing -- and so far EVERYTHING is coming back "negative" (puzzling to him because the various tests have - so far - shot down the two things that it might have been). I have one more "Test Day" here in a couple of weeks and if nothing positive by then, we'll probably be looking aty a kidney biopsy in February.
And couple points in all this is that, first of all, if the doctors were just more familiar with hypercortisolism and understand the damage that it does to your Immune System, they would have understood that it -right now until it gets built back up - takes me a lot longer to recover from things (I have had a flu bug last 3 months, when others in the family had it for a week or less). And iof doctors would do full range of tests and not "guess" what it may or may not have been, I would have been diagnose with the fungal infection probably 6 months earlier. And if I had been run through just one cycle of anti-fungal medication it wouldn't have screwed with my BP / Pulse. And if the BP & Pulse would have been just left alone with no meds at all, once the Respiratory Disorder would have runs it course I would have been back to my workouts (I am one ofthose weirdos who LOVES hard workouts - and varied ones) and my BP & Pulsewould have returned to just fine (prior to the Respoiratory Disorder - even at the height of my Cushing's disorder, I have always had VG to Excellent BP & Pulse levels! But then the massive amount (and strong dosages) of the BP & Pulse meds have clearly screwed up that right flank area (kidney?)... and I have gone from very good condition (working out hard and everything in early July 2008) to the point of barely being able to get around and in constant severe pain. Doctors' responseshave screwed up what was perfectly responding curative process.
So, I am taking the LDN primarily for the purpose of re-building the Immune System, first and foremost, and then hopefully also working on inflammation problems in the lungs and that right flank pain (if it turns out to just be inflammation that is), and healing nerve endings damage (peripheral neuropathy pains and tinnitus sounds). And as a secondary benefit, thereby clear up the slight amount of depression that i very occasionally fall into just in the melancholy of how long this has been going on --- and just being one thing after another. As to anxiety, there has been none of it at all. My NIH Regimen is still working fine with that and overall. As of August (for the first time since mid 2002) my cortisol levels have been solidly in the "normal range" (though they creates its own set of recovery problems as you develop certain symptoms because your body "got used to" th higher levels of cortisol and the body now views "normal levels" as being "waaayyyyy too low" -- and that process, of your body re-adjusting , can take up to 12 - 24 months!
(PC.... Not an easy disorder to deal wit... and clueless doctors have done nothing - except for the fantastic research-scientist-doctors at NIH) - but worsen things at every step of the "journey").
Posted by casse on January 4, 2010, at 18:12:06
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on January 2, 2010, at 16:32:10
I agree that LDN is not a firstline treatment for depression or anxiety.
I also don't care whether the way it makes me feel is placebo effect or not. I just wish that the "placebo effect" had been elevated mood instead of irritability and agitation. If that were the case I wouldn't care about the why, just about the results.
And I'm extatic that my exaggerated immune response to poison ivy has been helped by it. For the first time in many years I didn't look like a piece of wrinkled red leather this summer.
Thanks for posting all of those great links!
BTW, if you don't mind me asking, what originally generated your interest in LDN? Are you using it yourself or just an advocate?
Posted by Phillipa on January 4, 2010, at 20:18:41
In reply to Re: LDN Low Dose Naltrexone Questions » Elroy, posted by casse on January 4, 2010, at 18:12:06
All I can say is wow!!!! Phillipa
Posted by tea on January 6, 2010, at 16:46:58
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on January 4, 2010, at 14:45:31
Sorry I can't suggest anything to help. Thanks for sharing your "story". So sad, the mistakes part ("mutters under breath"- so frustrating that it occurs so often its almost typical and expected. Never heard your story, before (so I agree your unique!) but many others also with neg. consequences. Sigh. Too high cortisol is something I really no nothing about! I guess that doc tried to do something to help, but still!
I'm surprised your body had that inflammation with the already high cortisol, I'd though it would have helped the inflammation!- see I know nothing about it...:)
I had below optimal cortisol for a couple of years(after starting on thyoid meds, it's fairly common(at least it seems to occur with a minority of previous longer term hypothydoids.. those where it has developed over many years or decades) due to the sudden workload created by thryoid hormones in a weakened state)..
http://www.dr-bob.org/babble/alter/20031104/msgs/277255.html
I even used asthma puffers for the cortisol boost (as one way of boosting my levels quickly) at that stage.
http://www.dr-bob.org/babble/alter/20031003/msgs/270754.html
It is very easy to get overhigh on cortisol though, at least for me, even tapering down (once got those lumps of fatpads on upper back at that stage - using hyrdrocortione for slightly too long)That was back on 2002-2003 ish, now I'm fairly right there I think, but I can't push myself to a full day's work and tire quickly. I'm pleased to hear your levels are now Normalised.
I've had so many people(way too many) I know being given unsuitable meds- both type and amounts by docs, I think it's worn me out in the past 6 years! (my parents included), and its difficult for them to learn to question what the doc prescribes. At last I have my Mum checking with her heart specialist before adding meds, similar to you maybe having to check with the NIH I guess. It's wrong that the patient should have to be reponsible and its difficult for the patient to do.. you'd expect the doc to check! Good pharmacists are also helpful(I have used them for support with my parents scripts), but again you have to find that rare? excellent one who also has the time to care.
I agree that adjusting to the lowered cortisol will take many months too.
Don't know if it may help, but one of my favourite supps over the years was milk thistle?(OK- I usually post on alter)
Posted by tea on January 6, 2010, at 22:35:18
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on January 4, 2010, at 14:45:31
ADD:
Don't know if it may help, but my favourite supps over the years were milk thistle AND lactoferrin ?(OK- I usually post on alter)Unsure, Lactoferrin may have been of help all the way, then again it may not have helped at all either, or made worse!
Still may be worth looking at , or asking about.
I also got some lactoferrin in some colustrum, whey protein mix which seemed to make me feel good at one stage.
Mind you I've only ever taken one bottle of each.. intermittently.I can see why you're trying ldn.
Posted by Elroy on January 8, 2010, at 15:45:12
In reply to Re: LDN Low Dose Naltrexone Questions » Elroy, posted by casse on January 4, 2010, at 18:12:06
> I agree that LDN is not a firstline treatment for depression or anxiety.
>
> I also don't care whether the way it makes me feel is placebo effect or not. I just wish that the "placebo effect" had been elevated mood instead of irritability and agitation. If that were the case I wouldn't care about the why, just about the results.
>
> And I'm extatic that my exaggerated immune response to poison ivy has been helped by it. For the first time in many years I didn't look like a piece of wrinkled red leather this summer.
>
> Thanks for posting all of those great links!
>
> BTW, if you don't mind me asking, what originally generated your interest in LDN? Are you using it yourself or just an advocate?
>Answer One:
RE:
"I also don't care whether the way it makes me feel is placebo effect or not. I just wish that the "placebo effect" had been elevated mood instead of irritability and agitation. If that were the case I wouldn't care about the why, just about the results."
First of all, placebo effects do NOT last forever. A placebo effect is by nature a short-term (days, weeks, months, maybe even several months) mental aspect of your mind "fooling your body" that "XYZ" is working. Eventually the placebo effect goes away and you are back to your original symptoms (only now usually feeling worse as you had the "false break" during the placebo effect!
Also, the fact that you are NOT having the "elevated mood effects" the next day (or at least for the main part of the day) is the perfect evidence that your dosage of LDN is NOT performing its physiological (laws physics) activity.
The whole process of LDN is that the LDN when taken (at whatever time) SHUTS DOWN your Endorphin production. Completely. Totally. For about 3 - 4 hours. Then as the LDN wears off, the body resumes secreting Endorphins... but now with a vengeance. It is the "Adaptation Process" like Bodybuilders and Powerlifters experience through weight lifting. When they do heavy weight training they are NOT building their muscles up. No. They are tearing their muscles down!!!! Then the body's response is to kick in the "Adaptation Process" --- to not just build the muscle back up to where it was, but to make those muscles bigger and stronger so that the stress those muscles received - if it happens again, won't be so severe in the body. The weigh trainer has to help out by (1) RESTING those muscle parts long enough for the re-building to take effect, (2) eat plenty of protein (nitrogen - the only thing that builds MUSCLE) and caloric intake in general, and (3) increase the poudages for that particular lift once it starts to get moderately "easy" to lift that (i.e., if you find it hard to curl 50-lbs and work at it - using the above principles, your bicep and forearm muscles will grow and get stronger... to a certain degree. If you never increase the weight (to 60-lbs then to 70-lbs, etc.) then your biceps/forearms will not get any stronger nor any bigger - no matter how much rest and nutrition you give them.
Now that is a basic - but somewhat simplistic - explanation --- other factors come into play.... like the stronger that you get, the MORE rest that you need). I use this example as I am a forme competing (amateur) powerlifter. When I first started working out for powerliftingI would train my legs (squats) twice a week. As I got stronger I had to back off to training them once a week and then back off yet later to once every ten days and by the time I "retired from the game" was squatting only once every TWO WEEKS (and my poundages consistently and significantly increased).
BUT... for OUR benefit... that same type of Adaptation Process occurs with the CORRECT workings of LDN. Taking a dose NOT TOO LOW but NOT TOO HIGH causes the body's Endorphin production to shut down for 3 - 4, maybe 5, hours - depending on the individual. (You really need to read the couple books out there on LDN and not info from a single doctor who is doing his own interpretations - or from forum comments even... I really would hope that you don't believe a word that I am telling you --- until you do your own research and verify that it IS true --- but especially the book "The Promise Of Low Dose Naltrexone Therapy"). Dr. Bihari invented Naltrexone and then developed the concept - through further studying and clinical research the concept of LDN and the benefits that it has ... which are completely different than that of full-strength Naltrexone. He is definitely AN expert in LDN. But many LDN professionals (and I concur with them) today believe that Dr. Ian Zagon is THE leading expert (along with a close second maybe being Dr. Chris Steele of the UK). And the one thing that they all have in agreement is that 1.5 mg - for humans- is the lowest level one can take that will cause the body's Endorphin production to completely stop. In some cases (especially larger individuals - like myself), 1.5 mg doses might result only in a partial, quite small reduction in Endorphin production. So - if that were the case - I would feel only a "small return in my investment" at the 1.5mg dose. Going to the 3.0 mg dosage may help tremendously - say bring Endorphin production to a 70% halt... but only by going to the full 4.5mg dosage do I experience the COMPLETE shut-down (for said time frame0 of Endorphins.
AND.....
You are NOT going to be getting the Adaptation Process kick-in by the body unless you achieve the full shut-down of the Endorphin secretion. So the very fact that you are NOT experiencing the elevated mood effect and are "irritable and agitated" is the scientific proof that you are NOT experiencing the effects of LDN - at least not anywhere near a truly effective level.
(At my current 1.5 mg levels - and being a BIG guy - I am not "irritable and agitated"... but also am NOT yet experiencing the elevated mood aspects of LDN... and that is simply because I do NOT believe that I will reach total shutdown of Endorphin secretion until I get to 3.0 mg or even 4.5 mg... BTW, one of those advanced LDN doctors in his practice has on a number of occasions used as high as 7.5 mg of LDN to achieve patient shutdown of Endorphins to get the FULL recuperative effects of the LDN.... With one patient - and he granted that these were some REALLY BIG people - he got up to 10.0 mg and the patient still experienced the LDN process, but anything over that caused the higher LDN to begin to act like full-strength Naltrexone - and he ended up backing that patient back down to 7.5 mg as he was doing fine at that level with having full Endorphin shutdown).
Even if you had NOTHING wrong with you, shutting down the Endorphin secretion and its resurrection later at a much more major level is going to cause that elevated mood in anyone (a specific form of Endorphins is what is released during orgasm that gives one that ULTRA ELEVATED MOOD feeling). So, no... it is not going to be quite like that, but you'll feel definitely "Good"... and by no means "irritable and agitated".
Are you by any chance taking your ultra low LDN during the day? If so, you may be getting a partial reduction in your normal daily rhythm of Endorphin - but just enough cut back to make you feel "irritable and agitated".
There's TWO main reasons for taking LDN at bedtime. One is that since your body is going to shutdown secretion of Endorphins, wouldn't you rather that occur at night while you are asleep rather than during the day while you are up an trying to function with life - while having NO circulating Endorphins... and Two: Our body does MOST 9by far) of its Endorphin secretion during the last 3-4 hours of sleep (it reads your declining Melatonin levels and rising Cortisol levels to recognize that you are going to be waking in 3 hours or so and begins massive release of Endorphins to get into your system for the coming day.
With the shutdown (completely!) of your Endorphin secretion process (let's say from 1 AM to 4 AM) and then getting the Adaptation Process to kick in getting a tremendously massive Endorphin secretion that will not only be extremely more Endorphins but also the secretion process will last longer through the morning (even into afternoon) hours to insure that you have plenty of Endorphins in case something like THAT stress happens again (which it IS going to happen again... the very next night!)
And Endorphins do a lot more than just give you an "elevated mood"....
Quote:
Beta-endorphins are important regulators of the immune system. Naltrexone, which is a pure antagonist to opiates, causes an artificial blockade of the endorphin/opioid receptors in the brain. However, unlike the normal (~50 mg) dose of naltrexone used to treat drug addiction, which maintains this blockade continuously for 24 hours (preventing any derived pleasure from taking the forbidden drugs), low dose naltrexone (~3 mg to 4.5 mg) blocks the endorphin receptors for only a couple of hours. During that time, endorphins fail to attach to the receptors and the body compensates by creating more endorphins. (Note that Dr. Bihari prescribes LDN to be taken at bedtime to take advantage of the body's pre-dawn boost in endorphin production.)
End Quote:Quote:
Once the low dose naltrexone dose has been metabolized, the body is left with a (much higher) "normal" amount of endorphins as compared to healthy controls, which consequently "normalizes" the immune function. The link between endorphins and immune system regulation is a good candidate for more research.
End Quote:Quote:
More accurately, LDN is believed to restore normality to the immune system, which leads to correct immune system behavior. (In other words, it is an "Immune System Modulator" - it raises deficient Immune Systems to optimal levels AND decreases highly elevated Immune Systems down to optimal levels - Elroy)
End Quote:Another good book: "Google LDN ! : How an overlooked Drug Relieves Cancer, AIDS,MS, and Immune System Disorders for a Dollar a Day" by Joseph Wouk (2009)... Foreword by Bernard Bihari, M.D.
Elroy
Posted by Elroy on January 8, 2010, at 16:56:18
In reply to Re: LDN Low Dose Naltrexone Questions » Elroy, posted by casse on January 4, 2010, at 18:12:06
> I agree that LDN is not a firstline treatment for depression or anxiety.
>
> I also don't care whether the way it makes me feel is placebo effect or not. I just wish that the "placebo effect" had been elevated mood instead of irritability and agitation. If that were the case I wouldn't care about the why, just about the results.
>
> And I'm extatic that my exaggerated immune response to poison ivy has been helped by it. For the first time in many years I didn't look like a piece of wrinkled red leather this summer.
>
> Thanks for posting all of those great links!
>
> BTW, if you don't mind me asking, what originally generated your interest in LDN? Are you using it yourself or just an advocate?
>I am using it myself. I have had Cushing's Disease (specifically a very rare form of Pseudo Cushing's caused by a malfunctioning feedback loop in the HPA Axis that led to extreme hypercortisolism). It is believed to have begun breaking down in the late 1990s and "went active" in mid 2002 and then exploded in mid 2004... Within 3 weeks I had developed severe anxiety, severe insomnia, severe tinnitius, very strong peripheral neuropathy pains, significant water retention and a moderately significant weight gain (although strangely BP, Pulse, and Blood Sugar levels were in the VG to Excellent range in BP/Pulse and Good in Blood Sugar), complete hypogonadism, etc., etc. (several other symptoms however strangely I didNOT have some of the normal MAJOR symptoms of the usual Cushing's patient... but at the same time had symptoms that were much more rare within the Cushing's population... there are several forms of Cushing's, with Pseduo Cushing's just being one of them)
After working extensively with a major metropolitan medical center (consistently ranked in the top 5 year after year), I got into NIH Hospital in Bethesda, MD in a special study due to the rareness / uniqueness of my condition.
I was led to "Dr. Bob's" due mainly to the severe anxiety problem. After trying all the various AD medications (why do Psych Docs seem so determined to treat anxiety - especially very severe anxiety with anti-depression meds??)... EVERY one of the AD meds that I was put on either (A) raised my anxiety levels even more severely or (B) had horrible unbearable side effects or (C) a combination of both. Finally I switched Psych Docs and the (new) female P-Doc gave me an Ativan during our first appointment (noting that my anxiety levels were so high... she fully grasped that I did NOT have a psychological issue type anxiety but a physiologically medical caused anxiety). For about 45 minutes I actually felt like about 70% of the anxiety had subsided (recall that by this time monmths and months have gone by where I have been sleeping consistently 2 - 3 hours a night... Ambien, double-dosed, was needed to just get that). She ended up putting me on 1 mg of Xanax XR twice a day and maximum doise of Restoril at night - which upped my sleep to around 5 hours a night). I was no where near "better"... but felt considerably better than before that (I was basically house bound and mainly bedbound - felt icy cold all the time - especially feet and hands, although they would feel normal to the touch, so always under covers).
Then about 5 - 6 months later I ended up at NIH (testing was done all day, every day that was there , plus had to go through 24 hour tests twice the first week and once the second week). They corroborated the Pseudo Cushing's and were the ones who discovered it was the malfunctioning feedback cycle within the HPA Axis... and, well, came up with a theoretical treatment regimen (none of them on any of the endocrinoligical teams there - and these are research-scientist-doctors!) had ever handled a case like this and only a couple had even read about similar ones. That was 12/2005.
When I returned home and met with my P-Doc again, I started their treatment regimen. 2mg of Xanax XR FOUR times a day. The theory being that my HPA Axis was operating - at least in that one segment - in a hyperactive functioning and that the HPA Axis needed to be slowed down, which should start bringing my highly elevated cortisol levels down and IF those levels ever normalized and stayed that way for several consecutive months, that the malfunctioning feedback loop "could" then re-set... and that part of the problem would be cleared.
Within a month of going onto the NIH regimen I was like a new person. NO anxiety, NO insomnia, other symptoms reduced from 40 - 70% (except for icy cold feet sensations and peripheral neuropathy pains). I was soon back to lifting weights, boxing workouts, long hikes and bike rides, out socializing, etc. (That later changed around mid 2008 when doctors improperly intervened in a Respiratrory Disorder that had developed - very, very low Immune System)with incorrect diagnosis for 7 months, having me on incorrect strong anti-fungal medication for WAY too long - which also negated my NIH regimen an actually caused the ONLY rise in tested cortisol that I have had between 12/2005 and 8/2009... every other one was a decrease from the one before it - other than that time period... but then that is a whole different story where one doctor's screw up led to another disorder which led to another doctor screwing that up which led to another disorder, etc., etc. --- so I still have a touch of the Respiratory Disorder - which won't heal up totally until my Immune System is re-built, problems with higher levels of BP & Pulse and now also severe kidney inflammation - they think - problems).
But that's an even longer story. But still aspects that I hope that a combination of LDN therapy and The Milk Cure (*)
However... that is just the start of a long and nasty recovery process.
Your body - or parts of it - have become accustomed to high cortisol levels as being the "norm: now, so when you get down into normal levels they interpret it as having excessively LOW cortisol levels. The biggest problem symptom is that every muscle and every joint in your body aches like crazy (and areas like joints, bones, etc. that had prior surgery actually hurt consistently). So you have months and months before your body becomes accustomed to the new "correct" normal levels.
In the meantime, the damage that your highly elevated cortisol did (nerve damage mainly - peripheral neuropathy pains, the icy cold sensations, etc.) ALL has to be slowly, gradually (and hopefully surely) repaired - if not completely, at least to as much a level as possible.
Then there IS the Immune System problem. Cortisol - whether natural or artificial like prednisone or cortisone - is an Immunosuppresent. Period. High levels of any of those - even )especially) natural cortisol that is in the hyper high ranges will simply hammer the Immune System (both "deplete it and compromise it severely" as I was told at NIH)...
And it can take up to 2 years for both the cortisol-induced damage to be repaired (or at least as much as it can be repaired) AND for the Immune System to fully re-build itself and (basically) "re-learn" what its job is!
SOOO.....
THAT is why that I am taking LDN.
It is hard to say if it is working as I am on the lowest (starting dose) level of 1.5 mg and then will in a couple weeks move up to the 3.0 mg LDN dosage and then about 2 - 3 weeks after that will move to the maximum 4.5 mg level.
AND... I have only been on it for about 8 or 9
days.My objectives with it are what its supposed strengths are... to help rebuild the Immune System much, much more faster than just allowing "nature take its course" (with the routine recovery from hypercortisolism-induced Immunosuppression"
My son - who got a very severe case of Hepatitis A (was hospitalized 3 times for it) about 2 years ago, finally got rid of the Hep A infection (over several months), but had several "branch off" disorders developed in the meantime... again due to Hep A - induced Immune System collapse.
He first mentioned LDN "just in passing" to me and I began some basic research and then some more advanced research - and mentioned my findings to my son who then also began his research (and we passed info back and forth). Just due to timing, he started his LDN Therapy about a week ahead of me. But also is still at the 1.5 mg level, not making the jump to 3.0 mg for a couple more days yet.
(*)
http://milk-diet.com/index.html
http://www.rawmilktruth.com/The-Raw-Milk-Cure.html
Book: Milk Diet as a Remedy for Chronic Disease
Quote:
In 1929, one of the founders of the Mayo Foundation (forerunner to the Mayo Clinic), J.E. Crew MD reported that he had been successfully using the raw milk treatment for the last 15 years. He said, "The results obtained in various types of disease have been so uniformly excellent that one's conception of disease and its alleviation is necessarily changed. When sick people are limited to a diet containing an excess of vitamins and all the elements necessary to growth and maintenance, they recover rapidly without the use of drugs and without bringing to bear all the complicated weapons of modern medicine."
End QuoteElroy Note: Use of homogenized, pasteurized WHOLE milk is perfectly acceptable if one takes steps to replace the heat-destroyed enzymes from the pasteurization process (which is simply exposing the milk to about 160-degree for 1 -2 minutes). I do that my pouring out 2/3rd a cup milk from a gallon of milk into a small glass and then adding 2/3rds of a cup of plain, unflavored full fat yogurt into a 2-cup container that has a long narrow spout and pour the yogurt into the gallon of milk. I shake it thoroughly then and before each use (plus after the first full glass is drank, I replace the 2/3rds cup of milk back into the gallon container). I am on my second week of that therapy. I plan on giving it an HONEST 4 - 6 week trial (note that while some people stay on their "nothing-but-milk" diet from recovery on for the rest of their lives, doctors back in its era --- 1840s to 1930s, when big Pharma Companies began really growing, MOST doctors expert and advanced in this therapy looked at it strictly as a 2-week to maybe several month MEDICAL TREATMENT and then a gradual return to a "regular diet" - granted, what they felt to be [and in my mind mostly accurate] "positive diet] with possibly an occasional return once a year or two to the strict milk cure diet for 1 or 2 weeks as a "preventative").
Quote from the Mayo Clinic founding doctor:
QUOTE:
Striking results are seen in diseases of the heart and kidneys and high blood pressure. In cases in which there is marked edema, the results obtained are surprisingly marked. This is especially striking because so-called dropsy has never been treated with large quantities of fluid. With all medication withdrawn, one case lost twenty-six pounds in six days, huge edema disappearing from the abdomen and legs, with great relief to the patient. No cathartics or diuretics were given. This property of milk in edema has been noted in both cardiac and renal cases... Patients with cardiac disease respond splendidly without medication. In patients who have been taking digitalis and other stimulants, the drugs are withdrawn. High blood pressure patients respond splendidly and the results in most instances are quite lasting. The treatment has been used successfully in obesity without other alimentation. One patient reduced from 325 pounds to 284 in two weeks, on four quarts of milk a day, while her blood pressure was reduced from 220 to 170."
End Quote
Posted by Elroy on January 8, 2010, at 17:32:13
In reply to Re: LDN Low Dose Naltrexone Questions » Elroy, posted by tea on January 6, 2010, at 16:46:58
> Sorry I can't suggest anything to help. Thanks for sharing your "story". So sad, the mistakes part ("mutters under breath"- so frustrating that it occurs so often its almost typical and expected. Never heard your story, before (so I agree your unique!) but many others also with neg. consequences. Sigh. Too high cortisol is something I really no nothing about! I guess that doc tried to do something to help, but still!
> I'm surprised your body had that inflammation with the already high cortisol, I'd though it would have helped the inflammation!- see I know nothing about it...:)
> I had below optimal cortisol for a couple of years(after starting on thyoid meds, it's fairly common(at least it seems to occur with a minority of previous longer term hypothydoids.. those where it has developed over many years or decades) due to the sudden workload created by thryoid hormones in a weakened state)..
> http://www.dr-bob.org/babble/alter/20031104/msgs/277255.html
> I even used asthma puffers for the cortisol boost (as one way of boosting my levels quickly) at that stage.
> http://www.dr-bob.org/babble/alter/20031003/msgs/270754.html
> It is very easy to get overhigh on cortisol though, at least for me, even tapering down (once got those lumps of fatpads on upper back at that stage - using hyrdrocortione for slightly too long)
>
> That was back on 2002-2003 ish, now I'm fairly right there I think, but I can't push myself to a full day's work and tire quickly. I'm pleased to hear your levels are now Normalised.
> I've had so many people(way too many) I know being given unsuitable meds- both type and amounts by docs, I think it's worn me out in the past 6 years! (my parents included), and its difficult for them to learn to question what the doc prescribes. At last I have my Mum checking with her heart specialist before adding meds, similar to you maybe having to check with the NIH I guess. It's wrong that the patient should have to be reponsible and its difficult for the patient to do.. you'd expect the doc to check! Good pharmacists are also helpful(I have used them for support with my parents scripts), but again you have to find that rare? excellent one who also has the time to care.
> I agree that adjusting to the lowered cortisol will take many months too.
> Don't know if it may help, but one of my favourite supps over the years was milk thistle?(OK- I usually post on alter)*************************************************
You have it wrong.
I no longer HAVE the highly elevated cortisol levels, in fact I don't even have "high normal cortisol levels" ... I have (since around July or August) "regular cortisol" levels.... but after att least seven years - that we know of - of having highly elevated cortisol, well returning to normal ranges causes problems of its own--- problems that can last anywhere 9 - 10 months to up to two years.
I have the high inflammation levels NOW because my hypercortisol highly elevated levels of cortisol have came steadily down since my "visit" to NIH Hospital in 12/2005 (15 days of around the clock, every day testing of one type or another... my first day there they hooked me up with three IVs and just left them in - replacing them at the start of the 2nd week - as they were going to be doing so many injection and blood sample draws that it was easier to do it this way!).
I started the NIH Therapy Regimen in early 1/2006 as soon as I got my scripts filled. Other than when doctors screwed up my regimen with some contraindicated medications for a fungal infection in my lungs - and my cortisol levels went UP for about three months - other than that my cortisol levels steadily dropped test after test after test.
Finally around July - August of 2009 I hit "normal range" of cortisol levelws. But over seven years, my body had become acclimatized to the highly elevated levels being "normal" (as far as countering inflammations, aches, pains, etc.). So until my body re-adjusts to this normal level being the correct level AND until my Immune System gets re-built (Cortisol is an extremely powerful Immunosystem depletor and compromisor... and highly elevated cortisol if of course that much worse) - but until those two things happen, inflammations, joint and muscle aches and pains (severe aches and pains) will be common.
Which is WHY that I am taking the LDN Therapy.
Posted by tea on January 8, 2010, at 19:00:07
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on January 8, 2010, at 17:32:13
>You have it wrong.
>I no longer HAVE the highly elevated cortisol levels
>
Gee I hate coomunication over the net.. I did understand you, my comment."I agree that adjusting to the lowered cortisol will take many months too."
Same as you are saying :) I do realise you now have normal cortisol levels after being high for too long.I also went thru that PN and tinnitus (severe). For me though the tinnitus was the result of the car accident.
Until treatment with thryoid meds though I had that cold.. ven colder than you aas I felt cold to touch after a few years, then skin on extremities would turn bluish (all went when on thryoid meds, BUT the thyroid meds started the PN. After whet you are saying it may be due to the lowering of cortisol (thyroid meds seem to lower cortisol, I presume by the T3 using it up myself as that's what it felt like) but its not a known. That's when my severe PN started.
However I got over that after a couple of years of B1. I tried B12 but that exaserbated it, also B6 greater than 20mg a day also increased it, but the solution , for me at least, was B1 (Thiamin HCl injections) or after I was almost receovered Benfothiamin together with a small amount of B12 (neocytamen injections) or methylcobalamin sublinguals as well as some B6 (P5P form as well as regular B6 and a balanced B including inositol and biotin and B2 especially.. but not too high! Long trial.. may have just been coincidence but seemed to work. BTW I doubt it would work for you as low B1 creates extreme fatigue and lack of weight gain, even to loss(to death) for extreme cases. I wasn't extreme, just the fatigue and lack of weight gain and the Ms type symptoms including the PN, but also the balance and many other symptoms.
I just get occasional PN now.
After what you have stated about the high cortisol being lowered causing this??? I think maybe that is why I started this PN with the thyroid meds (lower cortisol than body used to?) It was a rare reaction, but it seems to fit with your experience maybe?
Did you have this PN when your cortisol was high or did it beigin after your cortisol was lowered?
If anything it shows it will go away!Ldn seems to help me with urine frequency(stops), balance, hand eye coordination, handwriting improved--still not back, typing skills..hitting keys better now(still not good though!, but most of all it helps me relax my jaw ..something I've had difficulty doing since the accident and to breathe relaxed.. something I was finding immpossible to do although improving. So ldn seems to decrease "anxiety" in me (if that is the correct term for it! I still get headaches for up to 17 hrs even with a tiny dose though ..and the above effects for a couple fom days (wearss off 3rd day a lot but not completely). Strange isn't it?
BTW I'm fairly small and female.
Posted by casse on January 9, 2010, at 12:57:58
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on January 8, 2010, at 15:45:12
I was glad to see you give due credit to Dr. Zagon. I regard him as the foremost expert on LDN.
What I discovered in the 6 months I've used LDN is that whether I take 2.5 mg (the highest I've taken) or the very low dose I've been using, I still experience agitation. What I will try now that I seem to have found an antidepressant that works very well for anxiety symptoms (tianeptine), is to ramp up LDN quickly to 1.5mg again and continue to increase until I'm at 3 mg. I may have to wait for a few weeks to do that as I might need surgery in a couple of weeks.
I've read that naltrexone raises cortisol and noradrenaline levels ( albiet at the 25-50mg doses used in the studies on which the abstracts were based ). I just can't help wondering if some people experience an increase in cortisol even at a low dose. It has been my suspicion that elevated cortisol and noradrenaline are responsible for the irritability and agitation, not the LDN pr.se.. BUT, what I can say for absolute certain is that when I use LDN, I feel much the same way the next morning as a dose of vicodin would make me feel. Awful.
I have a rudimentary understanding of homeostasis and the action of LDN. I'm familiar with all of the books you recomended, but haven't read them yet. Most of my information comes from scientific abstracts, lowdosenaltexone.org , and Dr. Zagon's posted research. I wasn't aware that Dr. Chris Steel, was considered an expert although he's definitely a high profile advocate. I must read more about his experience with LDN.
Maybe there have been studies using doses lower than 1.5 mg that I'm not aware of. Or maybe one of the books you recommend will explain why doses lower than 1.5 mg can't be effective, but with the dissention out there regarding dose, I would have thought someone would have made direct reference to it by now. I guess I won't know until I read them myself, and You've given me more incentive to do so. Thank you for that. Perhaps doing so will bridge some of the gaps in my understanding and answer some nagging questions I have.But I think it's an oversimplification to say that more endorphins will equal elevated mood. A study at U of M found that many of the women subjects with antidepressant resistant Major Depressive Disorder had exaggerated activation of the mu opioid system during emotional challenges, yet the binding potential of endorphins was diminished. Read both the article and the abstract.
Article:
http://www.anxietyinsights.info/overactive_brain_endorphin_system_linked_to_depression.htmAbstract:
http://archpsyc.ama-assn.org/cgi/content/abstract/63/11/1199This begs the question of whether more is better. If there is a reduction in binding potential, there may be a chemical deficiency preventing activation of mu receptors, and subsequently, no relief, or euphoria. Since I have MDD and have had poor success with antidepressants, I wonder if this applies to me. If I am understanding this correctly it isn't a matter of deficiency but rather, possible resistance to endorphins at the mu receptors. I also wonder how kappa receptors might play into this, since their activation is significantly involved in dysphoric symptoms.
I'm just throwing this out there in case someone has a handle on it. I don't' have the answers.
And I appreciated your excellent analogy Elroy.
All the best...
Casse
Posted by casse on January 9, 2010, at 13:39:27
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on January 8, 2010, at 16:56:18
Wow, what an ordeal you've been through!
The antidepressant I just started taking is supposed to help with damage to the HPA axis caused by chronic stress. With your chemistry background and gift for analogy, I wonder if you could simplify this. This is an excerpt from THE GOOD DRUG GUIDE
How does tianeptine/Stablon work? No one really knows. So the story below will soon be superseded. Tianeptine is neuroprotective via multiple neurochemical and cellular mechanisms. When an organism is under stress, or perceives itself under stress, the hypothalamus secretes corticotropin-releasing hormone/factor (CRH/CRF). CRH/CRF in turn increases secretion of adrenocorticotrophic hormone (ACTH) from the anterior pituitary. ACTH in turn stimulates the release of glucocorticoids from the adrenal cortex. Persistent, uncontrolled physical and psychosocial stress causes excess cortisol secretion from the adrenal glands. Excess cortisol causes dendritic shrinkage in the hippocampus and a contrasting growth of dendrites in the lateral amygdala. These stress-induced changes tend to lower mood; they can cause clinical depression in the genetically vulnerable. Current evidence suggests that tianeptine acts to prevent and even reverse stress-induced neural damage, promoting both neuronal survival and synaptic plasticity. Sustained use of tianeptine tends to "normalise" the hypothalamic-pituitary-adrenal (HPA) system. Tianeptine reduces basal and stress-evoked activity of the HPA, helping its users cope in a stressful environment. Treatment with tianeptine inhibits corticosterone-induced gene transcription. Stress-induced increases in plasma ACTH, and corticosterone levels are diminished. So too is basal activity of corticotropin-releasing factor (CRF) neurons and their sensitivity to stress. Prolonged tianeptine use also reduces some forms of stress-induced apoptosis ("programmed cell-death"), notably in the temporal cortex and dentate gyrus of the hippocampus. At the molecular level, tianeptine exerts profound effects on the glutamate system. The amino acid glutamate serves as the main excitatory neurotransmitter in the brain. Its excitatory action is mediated by via multiple receptor subtypes. The three main subtypes of glutamate-gated ion channel are kainate, ampa, and N-methyl-D-aspartate (NMDA). Tianeptine prevents overstimulation of AMPA/kainate type glutamate receptors in the hippocampus that regulate Ca2+ entry into the nerve cell; excess Ca2+ entry into nerve cells is toxic. Tianeptine also modulates the NMDA glutamate receptors. NMDA receptors for glutamate play a critical role in mediating the functional and intracellular effects of stress. Tianeptine reportedly targets the phosphorylation-state of glutamate receptors in the hippocampus, "normalising" stress-induced changes in the amplitude ratio NMDA glutamate receptor to AMPA/kainate glutamate receptor-mediated excitatory post-synaptic currents. Selective glutamate receptor antagonists, including sub-anaesthetic doses of the dissociative anaesthetic ketamine, can act as analgesics and neuroprotective antidepressants, despite dose-limiting side-effects. Their mind-altering properties deter wider clinical psychiatric use. Tianeptine, on the other hand, is an analgesic and antidepressant that lacks psychotomimetic side-effects at any sensible dose.
I've been using tianeptine for a week now, and have had the most remarkable relief in some extremely distressing symptoms that my psychonaut attributes to anxiety: stomache aches, choking feeling, pelvic pressure, and feeling like my chest is being squeezed, cold hands and feet, loss of focus, fatigue, and muscle tension and pain. I have had strong suspicion that this is a physical problem and not a mental one, and I get minimal relief from the muscle relaxant tizanadine.It seems my GYN is in agreement. She urged me to ramp up the tianeptine to full dose asap and gave me some ativan for short term use to help in case it made me too nervous at first. She also refered me to a Gastrointerologist as she believes that's the source of the problem. What's interesting is, when I take the tianeptine, I get almost complete relief of the symptoms, but they return as the drug is metabolized. It has a short half-life and must be taken throughout the day to maintain levels. I wonder, if my problem stems from my GI tract, why is the tianeptine helping the symptoms?
I respect your input, the sooner I get this resolved, the sooner I can get on with LDN.
Casse
Posted by Green Willow on January 9, 2010, at 22:50:29
In reply to Re: LDN Low Dose Naltrexone Questions, posted by Elroy on January 8, 2010, at 15:45:12
>
> The whole process of LDN is that the LDN when taken (at whatever time) SHUTS DOWN your Endorphin production. Completely. Totally. For about 3 - 4 hours. Then as the LDN wears off, the body resumes secreting Endorphins... but now with a vengeance.Elroy, Would you know if the vivid dreams occur during the shut down time or the vengeance time? The reason I ask is because since I've been on LDN, I cannot drag myself out of bed for anything in the morning until about 10:30 or 11 a.m. I have the most pleasant morning slumber but it is getting in the way ~ I sleep thru my alarm, miss morning appointments, etc., just can't get up. Oftentimes, then when I do wake up it seems like I am coming out of the dream and they seem to happen real time. I have delayed sleep-phase syndrome and I suspect that has something to do with it. Any ideas? Thanks, Green Willow
Posted by tea on January 9, 2010, at 23:28:29
In reply to Re: LDN Low Dose Naltrexone Questions » Elroy, posted by Green Willow on January 9, 2010, at 22:50:29
When I've tried 1.5 mg to 3mg dose I have detailed dreams as well ( can even recall the glass in windows and steps and paint, the asphalt?). I also can't get up and sleep thru to about then as well. I don't have any delayed sleep normally though... no idea why it occurs though
My dreams are wierd though. Lst time I got mugged just after I walked around a corner in the dark , then I woke up:) (I like the wake up bit)
Posted by Green Willow on January 10, 2010, at 12:54:06
In reply to Re: LDN Low Dose Naltrexone Questions » Green Willow, posted by tea on January 9, 2010, at 23:28:29
> My dreams are wierd though. Lst time I got mugged just after I walked around a corner in the dark , then I woke up:) (I like the wake up bit)
>Mine are weird too. Usually hopeless circumstances. A common theme is being stranded on a bridge or island with a herd of cattle and surrounded by a rushing river. Now that's weird! I agree the best part is waking up. Wish I could get back to regular real world hours. What time do you go to sleep? What time do you take your ldn? GW
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