OddDuck's "odd" regimen

Tell us what you are using to treat your MS-- and how you are doing.

OddDuck's "odd" regimen

Postby OddDuck » Sat Jan 08, 2005 1:29 pm

Someone asked if I would post my regimen. I think I did somewhere else before, but here's an update.

-Low fat diet
-Mild exercise (stationary bike and stretching mainly)
-Eat nuts every day (for vitamin E, etc.)
-Green tea
-Multi-vitamin (for "mature" people, loaded with extra Bs, etc., and also has lycopene and lutein and bilberry, on and on)
-L-Carnitine (250 mg once in the morning and once at night)
-Grapeseed (50 mg tablet - I just take one a day)
-Fish oil (but I take a Fish, Flax, Borage combo - 1200 mg. once a day - note that the one I take also contains Omega 9, which is oleic acid. Most fish oils don't contain that. I ran across some evidence a while ago that oleic acid also helps promote axonal growth.)
-CoQ10 (50 mg once a day)

-Norpramin (i.e. desipramine) - 50 mg. once a day (at bedtime)
-Keppra (i.e. levetiracetam) - 1,000 mg twice a day (once in the morning, once at night)

That's all folks. Oh, besides the fact that I seem to have NO side effects. Absolutely none.

Deb
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Postby Tomi » Fri Jan 28, 2005 8:51 am

Hi Deb

I have read somewhere else that you don't have MS any more and the improvements started after you started taking your supplements.
Is that correct?

Also may I ask if you take the Norpramin and Keppra based on your research to help MS or for something else?

Thanks a lot

Tom
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Postby OddDuck » Fri Jan 28, 2005 12:54 pm

Hi, Tom.

See, that's the problem now. There is no more "sign" of MS now.

Yes, I took Keppra first for symptomatic relief of MS (spasticity and pain, etc.) after being diagnosed with definite MS (coincidentally finding how well it also helps cognitive problems - which you can do a search and find our previous discussions, etc, about that, too).

Anyway, I was about to start on either Betaseron or Copaxone, when I suddenly remembered that I had progressed some twenty years earlier and desipramine had helped me to recover then, so I "argued" a bit with my neuro about trying it again for MS (instead of one of the injectables). He finally gave in and prescribed it for me, and told me to do some research on it, also. That's when I found everything I did regarding desipramine and its possible use as an MS therapy.

So, yes............I took this combination for MS therapy. And it worked! My neuro was beside himself!

I think I relayed the whole story not too long ago - I'll go find the link - (and my research was published here and can be found under "Stories Archive". It was back in June, 2004. And you will see where I've talked about all my subsequent research, etc., many times in many threads over the past few months here on this website.) And the NMSS is still working with me on this, also. They are still interested in pursuing it at least.

Deb

EDIT: Well, maybe I didn't "post" the whole story completely. I know I told some via PM what actually happened. But the above is the bottom line. I argued with my neuro to try it for MS, he argued & said he didn't how it could possibly work and for me to give him some research on it, I argued back at him and he prescribed it for me, I did the research and gave it to him, he saw the improvement and said nobody would believe us and it needed a research trial, I contacted the NMSS who is still working with me on this, and when I went to another neuro he could find no evidence of neurological dysfunction anymore (I was declining so fast that within just a couple of months I had gone from being "ok" to walking with a cane for a few months before I recovered)........anyway, long story, but even taking me out of the equation, my research on desipramine for MS stands alone. I've provided the NMSS with MOUNDS of substantive material, which they have reviewed and found no flaws, etc. etc. etc. :wink: So, we're still working on getting a research study going on this for MS. The ALS Foundation ran across what I did, also, and just recently completed a research study (on mice) on desipramine for ALS. They found that in male mice, desipramine prolonged survival, and in female mice there was neurological improvement. And that was in ALS! So, yes, it's slow going, but it is going to be studied at some point here. As I said, the NMSS is working with me to get something going on it. Pretty exciting, huh? Keep your fingers crossed!

SECOND EDIT: Oh, yea! "Technically", my neuro was only able to prescribe it "off label" to me for sleepiness and cataplexy (narcolepsy) symptoms, which covered him legally, shall we say and WAS valid reasoning. But my main purpose for wanting him to prescribe and my discussions with him and research I did was for MS disease modification in total. I'll tell you the last thing he said when he examined me and was so shocked. He said "I've seen people 'feel' better sometimes taking certain drugs, but I've never in my life seen anyone regain permanent lost function!!!!" He was pacing the floor. And like he said "but I can't prove it......." That's why we need a research study and/or clinical trial.

By the way, it was never prescribed to me for depression reasons at all. I don't suffer from depression, and the low dose I take (which is crucial in conjunction with my theories, etc.) is not near enough to affect depressive symptoms anyway.
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Postby ropingheeler » Thu Feb 24, 2005 7:36 am

hi odd duck just wondering if anyone from canada has got the info you have collected about this drug and taken to there doctor up here sounds to me like we need to get this out so more people can work on this if it helped one maybe it can help more thats amazing that it helped you so fast if you dont mind can you send me your findings thank you
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desipramine

Postby MSandaVan » Thu Feb 24, 2005 9:17 pm

ropingheeler, from Canada has the right idea. Get it out, hope that it could help others also.

Antidepressant? eh? Interesting.

If it wouldn't be a problem, I would really be interested in reviewing your materials, but only if you have no problem.

Personally, I would like to think I don't depend on Pharmaceuticals, but that's a mis-truth. I've done Beta-Serone, the LDN (also off-label), using Copaxone now, preparing to go on Tysabri. So far nothing has an effect, other than my "life style." I guess, trying something new can't be any worse than the Bee stings. They had no benifitial effect, except now I get good local honey, cheap, by the gallon. :)
"I WENT SKY…DIVIN’, I WENT, ROCKEY MOUNTAIN CLIMBING…
SOMEDAY I HOPE YOU GET THE CHANCE,
TO LIVE LIKE YOU WERE DYIN'”
Tim McGraw
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Postby OddDuck » Sat Feb 26, 2005 7:26 pm

Let me copy a post here that I gave to someone else on another thread. To find other posts of mine making correlations from research done on desipramine over the years, etc., you can do a search for the word "desipramine" and it will pull up probably a whole page of stuff I've posted as I found it. Anyway, here is some of it:

Thisisms was gracious enough to post a narrative I did some time ago (last year), and since then, I have continued to research it, and uncovered more and more correlations (which if you search around, you can find my posts about additional things I found as we went along). All of which the NMSS also has in their possession.

The original narrative is at
<shortened url> Believe it or not, it is regarding desipramine. (Who would have figured?)

As I said, though, other postings of mine showing additional substantiation of the unusual and promising MOA's of desipramine can be found here on this website at various locations.

The most recent and compelling (for possible axonal regeneration and protection) being located at
<shortened url>

Please allow me to also copy here a portion of a recent synopsis/proposal that I sent (at a prominent researcher's request) via email to him.

....The studies I would like see happen first; based on lack of current progress in that particular area of research in MS, the greatest "need" for MS patients, the largest initiative for grant funding, and the easiest to proceed on and document results of; is as I mentioned yesterday. To put it bluntly, "axonal regeneration and protection in the adult CNS".

Combining the already tested results of desipramine under one theory or hypothesis applicable to multiple sclerosis, it is highly likely that desipramine will exhibit efficacy in multiple sclerosis (due to its unique combination of MOAs), via "activating" the adult CNS in vivo to regenerate axons, retain or increase plasticity, and in the process, also show protection (or at least delaying the process enormously) of the axons from being deteriorated in the first place. The best possible evidence of this that could be measured adequately would be in "progressive" multiple sclerosis, not relapsing-remitting.

I myself do not believe full blown clinical trials with actual patients at this time would likely yield the type of efficacy that we want to be able to substantially provide evidence of.

Since there are no adequate mouse models of progressive MS at this time (of any pattern), that leaves us with lab research. That is feasible, measurable, documentable, and fairly cost effective (if there is such a thing in medical research, as we all realize).

If something positive arises from in vitro research for MS specifically, then moving it forward in vivo would then make more sense, and provide more substantive groundwork to build off of. There is no sense in jumping into something which only results in building something on "sand". A good foundation needs to be laid first, in my humble opinion. Anecdotal claims of efficacy more often than not lead nowhere, and can be basically and fairly easily dissected back down to nothing again. The same principles that apply in the legal world also apply in the medical one.

Dosage of desipramine is crucial. That fact needs to be remembered at all times. CA2+ influx is affected by desipramine (which as we know can do damage to axons), and paradoxically the dose of desipramine can cause that to go either way. It can either increase CA2+ influx or DECREASE it. Decreasing it is the way we want to go in MS. That requires careful dose of desipramine. Too much, and you tend to cancel out any probable benefits you are receiving in other areas from desipramine. (Levetiracetam, though, in combination with desipramine is another story altogether, though! Levetiracetam is HIGHLY neuroprotective because of it's EXTREME MOA for decreasing CA2+ influx, and is very synergistic with desipramine. AGAIN, not anecdotal, but shockingly coincidental! But levetiracetam does not show indications of providing disease modifying benefits, whereas desipramine does. And levetiracetam is GREAT for cognitive problems, but that drug is under patent still, and somebody will find that symptomatic efficacy eventually.) Sorry, I digress.........

Anyway, it is the "chronic low dose" application of desipramine that tells the tale.

Am I able to provide substantive material for all of the above? Yes. It's easy. Any web search on any of this will pull up lots of substantive research, but it's dissected. Each individual piece of the puzzle has to be compiled separately. Has desipramine shown that it enhances GAP43? Yes..........in connection with nothing in particular, it just showed that by itself. Has research on desipramine shown that it decreases CA2+ influx - yes, via research on that specific action by itself. Does it increase cAMP at the spinal level? Yes. And on and on. It is once you pull all the individual results together that you can see how if it TRULY does do what all of these individual conclusions have proven it does, and then compare those results to what you want to see affected in multiple sclerosis, you have a "match". An uncanny match.

Here is another example of correlations I find "off the cuff" (although this may not DIRECTLY pertain to axons, per se, but is a handy type of reference) - I don't have with me here which research publication I got this from, but......, ...

"The stimulation of immediate early gene expression in brain and neuronal cell culture systems has been reported after various experimental paradigms such as chemiconvulsant-provoked seizures or specific drug applications. In particular, the induction of immediate early genes by adrenergic model substances has been demonstrated by several investigators. This report demonstrates that a single dose of desipramine (10 or 25 mg/kg), a classical tricyclic antidepressant drug acting on the adrenergic system, induced c-fos and zif268 expression in rat hippocampus without affecting c-jun. ...."

I was intrigued, so I went farther:

"Prog Neurobiol. 2004 Nov;74(4):183-211. Related Articles, Links

A gene for neuronal plasticity in the mammalian brain: Zif268/Egr-1/NGFI-A/Krox-24/TIS8/ZENK?

Knapska E, Kaczmarek L.

Department of Neurophysiology, Nencki Institute, Pasteura 3, 02-093 Warsaw, Poland.

Zif268 is a transcription regulatory protein, the product of an immediate early gene. Zif268 was originally described as inducible in cell cultures; however, it was later shown to be activated by a variety of stimuli, including ongoing synaptic activity in the adult brain. Recently, mice with experimentally mutated zif268 gene have been obtained and employed in neurobiological research. In this review we present a critical overview of Zif268 expression patterns in the naive brain and following neuronal stimulation as well as functional data with Zif268 mutants. In conclusion, we suggest that Zif268 expression and function should be considered in a context of neuronal activity that is tightly linked to neuronal plasticity.

PMID: 15556287 [PubMed - in process]"

I hope this continues to assist with explanations for why I am pushing for testing specifically in MS for desipramine.

As a last thought, though. To make it REALLY easy, the NMSS recently granted funding to someone who claimed that keeping the immune system predominantly TH2 and raising IL10 had not yet been proven. I beg to differ completely. If we want to simply provide evidence of a drug agent that DOES to do those two things simultaneously WITHOUT even spending a DIME, we can do that. Desipramine has YEARS worth of research conclusions all showing the same thing over and over again.

Desipramine keeps the immune system response predominantly TH2 AND raises IL10 dramatically. Done deal. Proven. There went THAT good money down the drain.

Oh, well..........onward and upward. I apologize for the length of this email, but my impression is that I needed to begin presenting my case, as it were, instead of my "passion".
Thank you for your interest.

Best regards to you,

Deb

EDIT: P.S. As I mentioned, my original narrative was last year. Since that time, I have established a good relationship with the NMSS Research Department in New York, and have found more substantive scientific and biological supportive background for desipramine. To date, those M.D's and PhD's who have reviewed my correlations and additions (since writing that first narrative, which was really just a quick synopsis for a neurologist friend who asked me to do the research in the first place) have not been able to find any flaws.
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Postby OddDuck » Sat Feb 26, 2005 7:33 pm

I'm telling ya, I've tried so hard to get this out, that I'm plum tuckered out! :lol:

Hence why posting it on the web like this is the best way to reach the most people.

Anyway, if a researcher wants to investigate it, all they need to do is make application to the NMSS for funding! The NMSS has all my research, ran it past their panel(s), and they eventually said that I do have plenty of biological substantiation for having it looked into. Now how to engage a researcher to make application to start researching it for application for MS specifically?

THAT'S where I've gotten burned out. So...........at this point, I just left it all with the NMSS. The person I have been in contact with for the past (almost) year, said that when Dr. John Richert comes on board as the new VP of Research in April, he will be told about it, too.

So...........that's the point it is at right now.

Deb
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Re: OddDuck's "odd" regimen

Postby NHE » Thu Mar 03, 2005 5:25 am

OddDuck wrote:That fact needs to be remembered at all times. CA2+ influx is affected by desipramine (which as we know can do damage to axons), and paradoxically the dose of desipramine can cause that to go either way. It can either increase CA2+ influx or DECREASE it. Decreasing it is the way we want to go in MS. That requires careful dose of desipramine. Too much, and you tend to cancel out any probable benefits you are receiving in other areas from desipramine.

Since Ca2+ levels in the brain appear to be so critical for the success of desipramine as a potential therapeutic agent for MS, I was wondering how you might propose to monitor this in patients? It is likely that each individual might respond slightly different to the medication and "careful dose" monitoring would indeed be needed. One method that comes to my mind would be to use NMR Spectroscopy. However, this would greatly increase the cost of any study involving MS patients.

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Postby OddDuck » Thu Mar 03, 2005 11:44 am

NHE,

I believe some type of spectroscopy should become standard in ALL clinical trials in any event (and even just in monitoring patients with MS as a general rule). But yes, I mentioned MRS, along with perhaps MRT, also.

But that might be putting the cart before the horse. I think bench trials need to be performed first on desipramine, and from that, I believe it can be more adequately determined what type of methods need to be employed for adequate measurement and monitoring.

MRI is fast becoming obsolete anyway, and clinical trial protocols are being reviewed and re-evaluated presently, and many newer diagnostic and prognostic technologies and tests are being implemented rapidly as "standards", so it is pretty early to speculate on.

Deb
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Desipramine

Postby Brainteaser » Mon Apr 18, 2005 11:49 pm

Dear OddDuck,

I am interested in your 'odd regime' and particularly your use of desipramine. Could not the desipramine work something like keppra and act as a relaxant for spasticity? I am progressive MS but slowly progressive. These days spasticity accounts for 60% of my problems. I tried keppra without success but maybe desipramine on its own or with keppra might help? I see you believe it has disease-modifying properties but how might this work? Have others found similar success to yourself and just finally, have you considered the antibiotic regime together with your own?

Thanks for your help,
Regards,
Phil.
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Postby OddDuck » Tue Apr 19, 2005 8:34 am

Hi, Phil!

Keppra only works for phasic spasticity, not for tonic spasticity. If you are suffering from tonic spasticity, that's probably why Keppra didn't help you. Other than Baclofen (and perhaps some physical therapy and/or opioids for pain), there is unfortunately not a whole lot that can be done to completely relieve tonic spasticity. If tonic spasticity becomes too bad, that is usually when a patient is considered for a Baclofen pump.

Desipramine isn't a "relaxant". It won't do anything at all for spasticity. It is helpful in relieving neuropathic pain, though (it is also used quite often for diabetic neuropathy), which is a totally different thing.

As far as the antibiotic route goes, I personally believe antibiotics are helpful for MS not because they work by getting rid of bacterial infections, but because most of them also have a secondary mechanism of action whereby they decrease the activation of caspase 3 (which is simply coincidental). Recent research has indicated that decreasing caspase 3 activation is helpful in MS.

My research regarding the ways in which both levetiracetam and desipramine "may" be helpful in MS is posted all over this Board. You can do a search and find many discussions.

As far as I go.................I got a second opinion whereby it was thought that I do NOT have MS at all, so to break the tie, I recently changed physicians again, and it is two to one. I do not have MS. I never did. I was totally misdiagnosed. Can you believe it? :?

Deb
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Postby Daunted » Tue Apr 19, 2005 10:14 am

Deb,

Again, congratulations on your re-diagnosis.

However, regarding antibiotics. You have mentioned previously that you were diagnosed with fibroymyalgia as well. Some doctors are having a lot of success using the CPn cocktail on those with fibromyalgia. Something you may want to consider.
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Postby OddDuck » Tue Apr 19, 2005 12:18 pm

Thanks Daunted!!

Yep........that's true.

Fibro and a bunch of various spinal degeneration is what I'm dealing with mainly. They've got me in physical therapy right now. Talk about making a difference!

Anyway, I'm pretty sensitive to meds, and antibiotics always cause me more problems than it's worth. Plus, I am allergic to a lot of them.

In any event, the two meds I'm on totally take care of the "fibro fog" (which mimics MS cognitive problems to a "t"), and takes care of all the neuropathic pain and spasticity that I get (as we know now is due to both fibro and my spinal deterioration, which - again - can mimic MS symptoms to a "t", even down to not being able to walk well, breathe well, bladder problems, etc. etc.) And to think I ASKED the neuro first off if it could only be my spine causing all of those things! (I apparently was correct.) Not just from scoliosis, but from stenosis, quite a few disc bulges, and spondolyctic changes. Good grief! :D

As of right now, I'm doing great! Had a full physical and all my test results came out A-1 (especially for my age).

Not to mention (as I see now), just how MUCH any added stress or emotional upset or concern makes your body go crazy! No matter what condition a person has.

That's why you haven't seen me on here much anymore. Although I became fully educated on MS, I don't have it. But what I do have sure fooled a few medical experts, huh? Talk about an MS "mimic"!

And to think I was one of the people who said misdiagnosing MS was so rare. I have to say now that I'm not so sure now that MS misdiagnosis IS that rare after all!

Hope you are doing well!

Deb
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OddDuck's Regime

Postby Brainteaser » Tue Apr 19, 2005 8:53 pm

Thank you for your response, Deb.

In one sense I am happy for you that you seem not to have MS. The downside is that we appear to have lost a more than able researcher/pioneer. Presumably, this lowers the standing a bit of the regime for MS, but may still be worth persuing.

All the best with your new challenges.

Regards,
Phil.

PS Can you sue neuro No. 1?!
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Postby OddDuck » Wed Apr 20, 2005 4:21 am

Well, it would be hard to sue neuro number 1 for medical malpractice. Diagnosing MS is pretty "subjective" and I do have so many things that mimic MS (especially when put together), so it would be pretty hard. Anyway, we already "had it out" with each other some time ago, and at this point, I told him that I wouldn't pursue anything. I could have "reported" him to the medical licensing board and he would have at the very least been investigated, I suppose, but personally, I liked the guy and for a while we were sort of friends, so again, I just can't bring myself to do anything against him.

If he was a physician who doesn't "believe in" fibromyalgia (there are many, and he and I never discussed fibro), he was left with nothing else to diagnose me with but MS. MS is often just purely a diagnosis of exclusion simply because they don't know what else it could be. So legally, I'd have little "proof" to stand on. Besides, he's a brilliant person and could do a lot for MS. I just think that in recent years, he's just sort of "gone astray" is all. :(

All my research, though, on the drugs I'm taking still stands alone anyway. It's all valid scientific research. I wasn't basing what the meds would do for MS based on what they did for me. I researched it all taking myself out of the picture totally. There have been other researchers who have come across the same things I have (the University in the Netherlands and the Auckland guys, as I call them), so I'm not alone in my theories. And remember, the NMSS reviewed all my work over the last year, and they support it, too, so it can't be too far off the mark for possibilities (or probabilities) for helping MS.

Besides, in many many ways, the pathogenesis of MS isn't that far off from a few other diseases. To tell you the truth, I'm not sure what sets MS apart that much from say, Fibro and non-melancholic clinical depression (to name two). Fibro has all the same symptoms (sometimes, but not often permanently disabling - except that I DO have permanent damage to my brainstem - and I was disabled for over a year myself) with even quite a few additional problems associated with it, and clinical depression if left untreated will also cause myelin degradation.

I'll probably pop in every so often and if I think I can add anything much to a discussion, I will. I still read here quite often, even if I don't post much.

Deb
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