Psycho-Babble Medication | about biological treatments | Framed
This thread | Show all | Post follow-up | Start new thread | List of forums | Search | FAQ

Re: LDN Low Dose Naltrexone Questions

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").


Share
Tweet  

Thread

 

Post a new follow-up

Your message only Include above post


Notify the administrators

They will then review this post with the posting guidelines in mind.

To contact them about something other than this post, please use this form instead.

 

Start a new thread

 
Google
dr-bob.org www
Search options and examples
[amazon] for
in

This thread | Show all | Post follow-up | Start new thread | FAQ
Psycho-Babble Medication | Framed

poster:Elroy thread:919880
URL: http://www.dr-bob.org/babble/20100103/msgs/932467.html