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ideas for drug-resistant adult?

I have adult ADD and it is interrupting work and home.  I’m self employed but nonproductive.

Ritalin, Adderal and Concerta had no effect.  But neither does tylenol, dental injectables, Demerol, or even Morphine. Nor does alcohol or THC!  I’m not just talking about ADD: I can’t get drunk or stoned, and they dont kill pain either. Drugs just don’t work on me at all. 

The doc wants me to try Strattera, but its expensive and since drugs in general don’t work on me, I’m reticent to try. 

I’d like to try non drug methods, or even a drug if it would actually do something…  even thought about acupuncture.  Omega oils didn’t help after a long trial, and flaxseed tastes like…

But I’ve got do SOMETHING !

Any recommendations? Anyone out there have this same situation?

Thanks!

Replies

How interesting! I clicked on this post because I’ve been through a TON of ADHD drugs-stimulants mostly. I’m good for a few months and then notice a negative change. I don’t have the issue with the other drugs, thank goodness. Can they do surgery on you?

I say try everything you can. Try acupuncture. Try changing your diet. Try away!

Posted by organizationschmorganization on Jun 20, 2014 at 6:46am

It sounds like anxiety to me.

Are you seeing a psychiatrist? GPs are not helpful.

Is there a support group near by?

Posted by DanielB on Jun 20, 2014 at 7:44am

Take a look at this article and see if the profile fits.  (The stimulants are also metabolized by this same pathway—2D6).

http://www.practicalpainmanagement.com/treatments/pharmacological/opioids/non-responsive-pain-patients-cyp-2d6-defect

Posted by BC on Jun 20, 2014 at 9:40am

BC that sounds exactly like me.  I was clued into this by a surgery nurse, but didn’t know where to find the exact condition.

I wonder if they can test that ‘family’ of my liver and maybe pinpoint some things that DO have a chance of working?  I also wonder how much that will cost….

Posted by Honorable JR on Jun 20, 2014 at 4:54pm

Daniel, you might have been replying to organization… but I don’t have anxiety.  I also don’t find drugs to work for a while, they don’t work at all.  My father was awake through his quadruple bypass (!) so I suspect the 2D6 issue described above. If that does show to be the case for me, then my best bet for treating ADD , AND for ever having any surgery, would be if they could match up a drug that works around my specific liver condition…

Posted by Honorable JR on Jun 20, 2014 at 5:01pm

BC thank you for finding this! I’m going to get tested for cyp-2d6 function.  Perhaps the docs can find an inhibitor or inducer to help my liver function more normally, so I can get help for ADD, and also for pain!  Thank you!

Posted by Honorable JR on Jun 20, 2014 at 5:27pm

Your welcome!  Honestly it was really cool for me to read your post and find a valid USE for all the massive amounts of internet research I’ve done over the last 6 months on the genetic mutations involved in various bad drug reactions.  The tests to diagnose are widely available; here’s a link to just one of the companies that do it.  They’ve got lots of info on their site (http://www.youscript.com) if you’re interested, but you have to click around a while to find it all, including the “for prescribers” section if you’re so inclined.  Here’s a link to “talking to your doctor” about it. 

http://genelex.com/patients/ask-your-doctor/

Posted by BC on Jun 21, 2014 at 1:44am

Honorable JR i was replying to you.

you indicated the lack of response to everything. that’s tolerance in some cases. in other instances it’s co-morbidity, whether it’s anxiety or the enzyme defect.

there’s no reason to not get tested, but don’t grasp at straws. the more common problem is more likely.

you indicated that Demerol, morphine, alcohol, amphetamine, marijuana and methylphenidate, all of them, don’t work for you. these all work in wildly different ways. Demerol is a pain relief solution to the enzyme defect.

that’s why i asked if you are seeing a psychiatrist. surgical nurses are not psychiatric nurses. they don’t have similar jobs, even if it seems they might.

being insensate to the effects of all of those substances just doesn’t sound plausible.

i, too, have issues w/ being awake during surgery. although, awake isn’t exactly the word i’d use.

i, too, have issues w/ opioids not working as expected.

i get it.

i really do.

i’ve had had more than one unpleasant occurrence, but you’re putting a blanket on all of everything just to rule other options out. that’s why i suggested anxiety.

no, i’m not a doctor. that’s why i asked if your care provider was specifically trained to help with this particular issue.

the other much more common indication is medication interaction. you left out a lot of details. you’re asking for a direction to take, but you aren’t offering details. self diagnosing is all fine, but you will suffer at the hands of an incompetent physician. i promise.

please, go to someone who is qualified and don’t ask for any definitive opinions on a chat board.

there is help. i promise.

Posted by DanielB on Jun 21, 2014 at 3:04am

Hi, DanielB.  Actually, the info BC provided was exactly what was needed.  I had searched before, but never found what I was looking for.  I am now having the enzyme test arranged at my doctor’s office.  BECAUSE all of the meds that don’t work on me are different, having the enzyme problem answer ALL of them IS the simplest answer.  As to my care provider being specifically trained, I would doubt that very many family physicians have enough experience and training to diagnose this issue.  Frankly, an empowered patient like myself, who is very aware of their body and it’s interactions, is the best clue a doc could have.  BTW, if you are having similar issues, maybe you should check out the link BC gave, too, and go talk with your physician about it…?  Thanks for the input, though!  I’ll try to update as soon as I know something more.

Posted by Honorable JR on Jun 24, 2014 at 2:05am

Ok….  back to the old drawing board… 

I had the CYP2D6 test done, and it shows me as an “extensive metabolizer”, which is…  wait for it..  Normal.

Well, crud.  I really hoped to have an explanation here.  Unless there are some super complex enzyme interactions somewhere, my doc and I are at a loss.  I don’t take any meds, so there are no drug interactions. 

I told the doc “Well, I guess I’m just weirder than we thought”.  She replied “right now, that’s the closest thing to a medical diagnosis that I have.”  LOL! 

Any OTHER ideas of what could cause someone to not have any effect from chemicals/drugs?

Posted by Honorable JR on Aug 12, 2014 at 5:12pm

Yes, that makes you a “normal” metabolizer. 

As much info as you can think of would help here, meaning, list out all the drugs for ADHD you have tried in the past PLUS the dosages you took of them (and how long you took them).

Same thing for the pain meds: which ones & dosages.

Same thing for recreational drugs—THC & alcohol.

The reason being—only to simply be able to rule out things like sub-therapeutic dosages. 

These things have most likely already been “ruled out” by your doctor, but technically I have to start over at square one.  The most important info might be if there are any other drugs you just get No Response from that are not in the ADHD/pain med category.  You can PM me again and I’ll give you my email address if that sounds better than posting it all here.

Posted by BC on Aug 13, 2014 at 8:37pm

Yes, I’m thinking the same thing, and so is the doc.  Start over, she said… 

I was given 20mg Metadate (Ritalin), 10mg Adderal, and 18mg Concerta, for a couple months at a time each.  No effect.  I don’t remember what dosages total, but the doc did go up in number or frequency of doses, and still no effect.  Aspirin, Tylenol, Ibuprofen, Morphine (“six times the adult dose”), Demerol (on top of the Morphine), common cold medicines like Codeine, Dextromathorphan, sinus relief tabs, etc….  all have No Effect. 

I REALLY don’t like the taste of alcohol (it was only in the last two years that I found a teaspoon of Cognac is good in tea or coffee), but the only effect I’ve ever had was a little warm on my forehead.  THC: no effect (1980’s and in 2014).

Dental pain relievers (injectables; all the different sulfs and caines, etc..) do NOT work, BUT, the topical analgesics that they wipe on the gums DO have an effect.  (Must be because they act directly rather than having to be processed by the liver enzymes, etc??)  Nitrous oxide makes me VERY seasick, but no pain relief.  I’ve had a triple root canal with, and without, the drugs, and it feels the SAME.

Motion sickness tablets sometimes help: Bonine is the best.  I HATE flying. 

I’m allergic to penicillins.  Most antibiotics don’t seem to work very fast (if at all?), except for the stuff they give you at the dentist’s office for infections in the mouth or jaw. 

Other than what’s listed above, I don’t know.  Other than as described above, I don’t take drugs or alcohol, prescribed or otherwise, and didn’t when I was a kid, either.  But I really need to start doing something for my ADD, and if I ever have an accident, or need a surgery, I’m screwed…. 

Any ideas, anyone???

Posted by Honorable JR on Aug 13, 2014 at 10:08pm

More questions/comments (but will save some of the “longer” ones for when I’m not on my cell phone):

• Dental injections for anesthesia versus topical application:  the problem with injections is that the dentist needs to be highly skilled in the art & science of this procedure.  It does not require hepatic metabolism for the anesthetics to work, the only thing that’s required is that a sufficient concentration of anesthetic is in the immediate proximity of ALL deep nerve branches that supply the area that needs to be anesthetized.  The “normal” neuro-anatomy is actually much more complex than most people realize PLUS it’s one of those areas of the human body that is notorious for having all sorts of individual variations. 

The fact that you do get relief when they (use the same drugs as those that are injected) are topically applied means they WILL do the trick when injected just as long as they are injected in the right place & in sufficient amounts.  The only difference between dental anesthetics that are injected versus topically applied is that when you’re using a topical the only nerve branches you’re trying to anesthetize are the superficial nerves which supply the gums.  Once the gums are anesthetized there is less pain when the needle is injected (in search of those DEEP nerves that supply much larger areas of anatomy). 

• Antibiotics: unfortunately, the majority of the time antibiotics are given for respiratory/sinus complaints the antibiotic wasn’t going to work very fast (if at all) in the first place because the offending organism wasn’t bacteria, it was a virus.  On the other hand, when people get infections of the mouth/teeth/jaw these are almost ALWAYS bacterial in nature (so antibiotics would be expected to work).

Posted by BC on Aug 14, 2014 at 2:32pm

• as for the various pain meds—each “event” must be considered in its entirety & in fairly great detail (details you may have NO idea about, but which could be gained from copies of medical records).

To be more specific, what was the source of pain that was then treated with Substance X (and what dose & route of Substance X was given…& over what length of time).  PLUS, for those “heavier” drugs, such as morphine, what physiologic signs (responses) were, in fact, noted by the attending physician or nurse. 

A purely hypothetical example could be something like you were being treated for radicular nerve pain due to a ruptured disk.  You tried Tylenol, aspirin, & ibuprofen at home (no relief—and that would be a pretty “normal” response).  You then went to the ER and several different “harder” drugs were given but did not provide relief (again, fairly “normal”).  For this particular etiology of pain there is a sizable portion of the population that will get no real relief from anything short of an epidural anesthetic/steroid injection or surgery (or the tincture of time while the disk rupture “repairs itself”—suffering daily while that process takes place).

One interesting “intellectual” thing to note about one of the most painful of all human conditions—nerve damage due to extensive/deep tissue burns—is that burn patients are given maximal doses of morphine but the morphine never actually takes any or much or all (just depends) of the pain away.  The medical providers will be able to “witness” that the patient appears to be in just as much excruciating pain (or maybe only slightly less) as before the morphine was given.  However, because medical science still has found no completely effective way of treating this horrible & intractable pain the only real reason morphine is given anyway is for the amnestic effects it provides.  At least this is what I’ve been told by those who work exclusively in burn centers—(imagine how HORRIBLE it would be to be either the patient or the caretaker here)—that the pain is never actually controlled or relieved, the one & only real “goal” is to make sure patients are on high enough doses of morphine, etc that you don’t kill them & that the patient will never remember the days/weeks/months of constant pain.

Posted by BC on Aug 14, 2014 at 3:09pm

Interesting comments.  I’ll have to check into the dental thing: I thought it was a different compound used for topical application…?  Many different dentists over the years, so ALL of them would have to be bad at injections for this premise to be correct…  And, the same procedure (bridge/crown, and triple root canal) feel EXACTLY the same with or without injections. 

As for antibiotics; I am very anti-antibiotic, and ONLY accept them for bacterial infections, NEVER for viral. 

The Morphine with Demerol on top was for a kidney stone, and neither one worked.  I’ve heard the amnestic claim about morphine before, but others dispute that because you can physically see people with traumatic pain relax and get relief when administered.  So I think that is an issue of what TYPE of pain, coupled with individuality, that makes the most sense with regards to morphine.  Regardless, there was NO effect, and they monitored me closely, so we still know that even with a 6-times dosage, no effect was noted by me OR the ER…

Likewise, I’ve thought a lot about the Bonine for air travel, and I’m still unsure as to how much of that is placebo effect, even in myself.  I did fly the other day without it, and I was fine, which was very odd…

I’m still looking for ideas on why chemicals don’t affect me…

Posted by Honorable JR on Aug 14, 2014 at 5:55pm

A quick reply (since I’m still on my cell—and yes, those were the “short” replies earlier).

Kidney stones are also in that category of “most horrific pain known to man” category.  NOTHING makes having (or passing) a kidney stone much better quite often, and especially if it’s large.  I know that from my medical training, my experience of dealing with others who’ve had them, as well as from my own personal experience.  [And FWIW, this is coming from someone who took ZERO pain meds after I was released from the hospital for a c-section with twins.  Pain is preferable to nausea and most pain meds make me so nauseous I’d just rather be in pain.]  When/if there is a superimposed kidney infection on top of a stone the “textbooks” describe the rapid onset & degree of sickness experienced as very remarkable & fairly simple to diagnose—based on the response to “CVA tenderness”—when you hit the patient’s back over the kidneys.  The fact that I only minimally flinched when it was done to me in the exam room (but had felt horrendous pain when I did the maneuver to myself at home…hence the ONLY reason why I went to my doctor at all…) is primarily what got me sent home with no antibiotics at all, just told to wait out the results of the culture (3 days later)—given that my UA was only “borderline” for bacteria.  I also did not have the other classic sign of pyelonephritis—extreme nausea/vomiting.  (Kinda ironic).

I got sent to a urologist/kidney specialist at that point and had CAT scans to visualize the stone, and was scheduled for outpatient surgery the following week as the size and shape of the stone (>6 mm and had spurs, or projections, that would certainly dig into the side of my ureter if it so much as budged a millimeter) was such that it was much too large to reasonably expect to ever pass on its own. 

When I arrived for surgery Monday (dreading the idea of having my first experience with general anesthesia) I told the surgeon I wanted a pre-op X-ray because of the experience I’d had the night before in the public restroom of a restaurant.  It wasn’t exactly how I imagined passing a stone that large would feel but something happened to me in there that was totally unlike anything I’d ever experienced before.  But mercifully it was fairly quick…so maybe, just maybe, that meant I’d be getting out of having to undergo general anesthesia. 

Even I didn’t quite believe that the simple fact that I had NEVER felt something like THAT coupled with the fact that I also “embarrassed myself” by groaning/moaning/yelling audibly, once, in a “public restroom,” (only because it was so sudden & totally unexpected), really meant I had passed this monster of a kidney stone.  The doctor didn’t really buy it, nor the radiology tech, nor any of the nurses…but probably ONLY because I was a PA (& might know what I was talking about) they went ahead and humored me and took the pre-op x-ray…because I was sure I’d have a bad reaction to anesthesia & my dad, the anesthesiologist, wasn’t there to make sure the anesthesiologist didn’t screw up.  The last thing I remember was the doctor who deeply regretted to inform me (with gas mask in the hand of the anesthesiologist) that it showed there was still a radio-opaque lucency in exactly the same spot as on the CT.

I awoke to an almost completely deserted ambulatory surgery center…all except for my bedside nurse & my husband, both of whom were bored beyond belief as they had been forced to pass several hours doing nothing but waiting until I regained consciousness. 

The first thing I heard, “You are FINALLY awake; and if you ever have surgery again make sure to let the anesthesiologist know that it only takes the smallest dose of propofol to completely put you out for a fairly lengthy procedure…& for hours afterward.  I was starting to get worried about you.”

The second thing, “The doctor has already left for the day, but he did talk to your husband.  You didn’t have a stone; they found nothing.” 

During my convalescence, among other things, I did a bunch of research on the sensitivity/specificity of the particular CT scan that was taken that showed almost UNEQUIVOCALLY, the stone & my bloated kidney (pyelonephritis)...and I called my dad…& I prepared to do battle with the urologist who apparently thought a phlebolith on x-Ray was close enough to where the stone was on CT, & who put me through this completely unnecessary procedure…subjecting me to the very REAL risks of general anesthesia for no good reason…

I was elated to hear from the urologist (before I made the unpleasant call myself to demand that he at least not charge me for all the crap that insurance apparently wasn’t going to cover).  I was satisfied that based on all available evidence I had, that he had simply failed to read that pre-op x-ray with a truly open mind (and since it was taken in only one plane there was no way for him to know exactly where that radio-lucent thing was; knowing for SURE would require two views & I was awake for the x-Ray part & knew they hadn’t asked me to turn over, so it was one view only).

He told me he was very sorry for not really believing that FOR ME to groan or moan audibly in a public restroom actually MEANT something—that I really had passed the Stone From Hell—because only after he could locate nothing while I was under general did he now know for certain that the stone must have passed spontaneously. 

Confirmatory bias is a very powerful thing.  The way people experience pain can be vastly different from one person to the next.  If I did not know for a fact that the majority of people who pass kidney stones have way much more intense & debilitating pain than I did I might be inclined to think that your story of taking morphine plus Demerol (and getting no relief) MEANS you are either a drug-seeker or a “freak of nature” or a wimp because if I could handle it, so you should be able to as well.  But, of course I know better, that according to everything I’ve ever been taught or read about kidney stones, severe & intractable pain is the NORM. 

And I’ve spent my entire life being enthralled and amazed by the complexity of the central nervous system and it’s varying responses to both pain & pain meds…listening to my dad’s stories and theories (that would eventually be proven true by medical research).  I wish that he were alive because I’d call him up and ask him about all this.  I bet you a million bucks that if there’s truly something “amiss” he’d have the answer.  Pain meds are incredibly complex.  The best person to talk to about this will be a Pain Medicine Specialist.

And if I hadn’t already written such a long post already (on my cell phone still) I’d bore you with some of his stories about how incredibly incompetent many dentists are at providing adequate anesthesia simply because they are never trained in all of the finer points of neuro-anatomy…and I’d GIVE a million bucks to be able to remember all the gory details of his countless lectures on facial anatomy & some of the more common variations of normal…

The very first time I went into surgery with my dad I was probably 8 or 9 years old; it was for a dental procedure, one that required general anesthesia…

Eventually my dad devoted his career to ophthalmic anesthesia, spending YEARS studying nothing but the tiny little details of “normal” orbital anatomy and the many variations on that theme so that he (& a few other pioneers in that field) could figure out how to reliably and predictably inject anesthetic around the orbit for “painless, awake, eye surgery.”  To develop ways that you could minimize the number of injections made (& the risk of perforating their eyeball in the process) but still anesthetize all major branches of all nerves for “neuro-normal” individuals as well as the MULTIPLE different “normal variations.”

Infiltration of local anesthesia is so much more complicated than YOU (and many dentists) realize.  NOT getting an adequate result is so much more common than YOU think.  The fact that YOU have gotten consistently bad dental anesthesia does not make you SPECIAL.

One of the groups of medical professionals that my dad frequently “targeted” was dentists and he was thrilled if/when some of them would take him up on his offers (pro-bono) to educate them on just how much they did NOT know about neuro-anatomy, which even included trips to cadaver labs to demonstrate all the common variations of “normal” & how The Such & Such Technique they learned in school will only block 95% of the nerve fibers of any “normal anatomy” patient but will leave Y% completely un-blocked…and in pain!

I’m sure I sound a little obsessive right now, but for God’s sake, I helped him write a textbook on ophthalmic anesthesia way back when I was in college.  I DO know just how incredibly complex the anatomy is, and how it takes a freaking genius spending ALL of their free time just to figure out what all the “variations of normal” are in one particular (& fairly small area) of the human body.  There are very few dentists who are that devoted to providing the BEST possible outcome in anesthesia.

I realize all of this doesn’t “solve” your dilemma right now, but I hope it at least opens your mind to some different possibilities.

Posted by BC on Aug 15, 2014 at 1:44am

• You didn’t say what all genetic polymorphisms you were tested for: only the 2D6? Or the entire family of CYP 450 enzymes?

• Aside from hepatic metabolization of certain drugs there’s also other genetic polymorphisms that will effect how you respond to morphine, specifically.  These mutations cause problems with how sensitive/resistant the opioid receptors are to morphine as well as how morphine gets transported through the blood-stream and across the blood-brain-barrier.

• once someone has been given morphine (and especially if at high doses) there is a tendency for clinicians to be really conservative in dosing any additional narcotic/opioid drugs—not wanting to overdose & kill you.  It is not uncommon to have the later add-on dose of Demerol be one that is so low it is considered sub-therapeutic.  Going back through records to establish that dose could elucidate that possibility.

• regardless of whether you ARE one of those people who do not respond much (or at all) to morphine, the urology guidelines I googled overwhelmingly seem to say that non-steroidals are considered to be much more effective than opioid/narcotics at managing renal colic (pain from the ureters due to a kidney stone).  There are also other anti-spasmodic medications that are added on and can be more helpful than narcotics for this type of pain.

Posted by BC on Aug 15, 2014 at 3:30am

• Now, this comment leaves me really at a loss as to what to say: “As for antibiotics; I am very anti-antibiotic, and ONLY accept them for bacterial infections, NEVER for viral.”

So, what are the criteria you use to determine if something is bacterial or viral?  Results from a CBC indicating a right vs a left shift?  Always also obtaining a specimen (throat swab, sputum sample, etc), sending it to the lab for culture & sensitivity, then only starting antibiotics after 3-days once the exact bacteria is identified (and sensitivity tests will show which specific antibiotics that bacterium is resistant to or susceptible to?

Or do you determine bacteria vs virus based on how bad you feel? How high your fever is?  How much your throat hurts?  Then if you go to the doctor and he/she gives you an antibiotic that MEANS you were right about that?

I read a study about 15 years ago which took a large number of seasoned general practitioners/pediatricians and had them do a history & physical exam on bunches of different patients who presented with what appeared to be strep throat.  Of these medically trained individuals they were only correct (based on waiting 3-days for culture results—because rapid strep tests aren’t 100% reliable) in 60% of patients RE: Who actually had strep (& therefore should take antibiotics). 

If you only go to the doctor when YOU suspect something is probably bacterial & the doctor decides to give you an antibiotic that does not mean it was DEFINITIVELY bacterial. The ONLY way to know IF both you & your doctor were right about something being bacterial is to obtain a culture…and a culture will also include the sensitivity report.  Therefore you would ALWAYS be able to know if the antibiotic you were given was, in fact, an appropriate antibiotic for the bacterium in question.  So IF you do actually know that every time you took an antibiotic it was the right one for that strain BUT YOU DID NOT GET BETTER VERY FAST OR AT ALL, then you really need to make a list of all the antibiotics you took which you KNOW should have worked better than that (because the sensitivity report proves it), and start with those KNOWN drug failures.  That would be the perfect place to start!

Posted by BC on Aug 15, 2014 at 3:57am

Have you tried lots of vigorous exercise?

http://www.amazon.com/Spark-Revolutionary-Science-Exercise-Brain/dp/0316113514 I got this book because it was cheap, and it turned out to have GREAT information on exercise and mental health. It’s not well studied, but there are basically no side effects, so I don’t have a problem recommending it. You can even preview some of the pages on Amazon!

Posted by monkeydriven on Aug 15, 2014 at 2:32pm

BC: no, I didn’t always get a culture done, but there are certain types of ailments that docs frequently say “Let’s try antibiotics”, and I would question them: “what is the likelihood this is bacterial, versus viral?”  If they did not have a high probability of being bacterial, then I declined the stuff right off the bat. 

I appreciate the input about maybe mis-perceiving how this all is actually behaving within my body, and I acknowledge (always have) that something like that might be in play.  However, I’m very in tune with my body and the results have been consistent over the years, with medications.  They either have no effect or have an adverse reaction, so I’m confident that this is the case. 


My only hesitation is connected to the years of being told by docs that this couldn’t be the case, when in fact it is clear that it can be.  I find it appalling how confident docs are in medicines, instead of having a healthy dose of skepticism about them, and a healthy level of belief in the patient. 

Great link about that aspect, in regards to CYP2D6, by the way:  https://www.youtube.com/watch?v=X1iKibDqtck 

As for the tests: no, they only tested for CYP2D6. I also wonder if the lab tested only for the genetics and not for actual FUNCTION of that enzyme (and I will ask them that ).

I do wonder how much interaction between the enzymes (and they do) could be causing the issues I have, and whether it may not be a good idea to run a full genetic test AND function test of all the enzymes and other metabolisers…?

Posted by Honorable JR on Aug 15, 2014 at 3:30pm

Of course, I may not have any blood left after that…

Posted by Honorable JR on Aug 15, 2014 at 3:32pm

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