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Posts posted by CHfather

  1. Sanni, below is some information from Les Genser about what to look for in a licorice root tincture.  Since there are some concerns (which you seem to be aware of) regarding taking too much licorice root tincture for too long, or in combination with some other meds, you might want to look at this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    Note that down below there's a website in Europe from which Genser suggests ordering the correct tincture: www.organic-herbal-remedies.co.uk/

    Here's what Genser says (as summarized by me) about the tincture:

    >>>Genser wrote: “Use ONLY a whole plant extract (tincture) of licorice root (Glycyrrhiza glabra). Good high-quality tincture is available at any health food store and many pharmacies—Whole Foods, Mom’s, etc. Get the best one you can find; it should be about $20 for 2 oz.  Label should say 1:5 (that’s the potency) and 30%-40% alcohol by volume. Do NOT use teas, candy (which isn’t real licorice anyway, its anise) or anything other than a whole plant extract. This is very important.”

    Later in the thread, he added: “DGL licorice tinctures, that is those with the glycyrrhizin removed will NOT work. The phytoestrogens which I believe to be the effective components here are compounds called flavonoids, and are derivatives of glycyrrhizin. For similar reasons, I suspect that glycerates, tinctures in which the alcohol has been replaced with glycerin, will also NOT work. My reasoning here is that the alcohol is heated off a regular tincture to make the glycerate, and I believe the heat is damaging or inactivating in some way those same flavonoids.”

    He emphasized: “DO NOT use powdered prepackaged capsules, pills, or anything other than a tincture…. Powdered herbs lose their potency VERY quickly.”

    To order by mail in the US if a store is not nearby, he suggested Mountain Rose Herbs (“all their stuff is organic and small batch and they make a 1:4 whole root tincture. It’s also priced decently, 9 bucks a fl. oz.”); Gaia Herbs; and Terrafirma.

    In Europe, he suggested the website http://www.organic-herbal-remedies.co.uk/

    He also provided instruction for making oneÂ’s own tincture, which can be found at the thread (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254).

    A ClusterBusters member asked Genser about a different formulation—“It varies slightly from yours. Mine says: Herb strength ratio 1:3, alc 45-55% by volume. Dosage is 30-60 drops, 2-3 times daily. It costs about the same as yours. Whaddaya think?”  Genser replied, “That should work fine. The 1:3 means it slightly more concentrated than the one I made.<<<

  2. thankfully, they seem to have covered the CH story sensibly and sympathetically, at least from the clip -- which, by the way, is now posted by nat geo at youtube, where it's been seen by close to 13,000 people in less than two days: http://www.youtube.com/watch?v=Njb4H1x8oSg

    i suppose they have to sensationalize the promos to get viewers.  the first two episodes in this nat geo "drugs, inc." series this year, "hash" and "crack," got over 4 million viewers.  so, people will learn and people will be helped.

    thanks again, dan, lee ann, and family.

  3. There's a schedule here: http://channel.nationalgeographic.com/channel/schedule/ngc/

    Set date to 1/15, and the blue rectangle top right shows the times for different zones.

    I hadn't really looked at the structure of the whole show before -- seems like maybe a lot of sensationalism mixed in with the positive CH/MM story? http://video.nationalgeographic.com/video/player/national-geographic-channel/shows/drugs-inc/ngc-drug-labs-in-the-forest.html

  4. >>>

    Theoretically (I'm pretty sure on this, but not POSITIVE that Bol-148 hits the same serotonin receptor, the 5ht2a receptor--anybody have any info on that?)
      Ricardo, this is all way too complicated for me, but here's a passage from the 2010 article about BOL by Halpern and others.  I might be taking it out of context . . . but I'll leave it up to you to do the heavy lifting.

    >>>However, prolonged administration

    of BOL-148 does not result in cross-tolerance

    to LSD (15). This, in turn, suggests that BOL-148Â’s

    mechanism of action for CH is unrelated to those

    receptor systems thought to be involved with hallucinogenicity:

    5-HT-1A and 5-HT-2A.  The ergotamines (including BOL-

    148, LSD, dihyroergotamine, and methysergide) likely

    have positive treatment effects for CH through serotonin-

    receptor-mediated vasoconstriction.<<< 

    Bottom of p2 at http://clusterheadacheinfo.wdfiles.com/local--files/file%3Abol-148/BOL-148.pdf

    Sewell makes what seems to me to be an interesting, possibly related, point in a 2010 discussion about BOL. >>We don't have any particular reason to suppose that LSD's effects on headache are mediated by 5-HT2A; it affects a lot of receptors.<<  Again, I don't know enough to know if this is important to your thinking or not, but it seems related to what you're asking.  It's here: http://www.dosenation.com/listing.php?id=7955

  5. Ricardo, with the understanding that I know nothing except what I figure out, maybe wrongly, from what I read, here are some thoughts.

    I think our TNF is out of control
    If I'm reading it right, there's a blood test for TNF levels that's used in many studies.  Would running this test on people with CH help resolve whether your thought here is accurate or not?  (Not saying that you or I or any of us have the capacity to bring about that kind of testing, but as a result of Batch's anti-inflammatory regimen, a lot of people are now insisting on having their vitamin D3 levels tested. No idea what would be involved in requesting a TNF test, whether it's a common thing or a complicated thing.) http://www.dialogues-cvm.org/pdf/17/DCVM17_07.pdf

    Note that the study you cite shows that 5ht2a receptors exist outside the brain, and that activation of those outside-the-brain cells also very strongly inhibits production of TNF (I think this is the same study -- the title you gave for it is different):

    >>>The G protein-coupled serotonin 5-hydroxytryptamine (5-HT)2A receptor is primarily recognized for its role in brain neurotransmission, where it mediates a wide variety of functions, including certain aspects of cognition. However, there is significant expression of this receptor in peripheral tissues, where its importance is largely unknown. We have now discovered that activation of 5-HT2A receptors in primary aortic smooth muscle cells provides a previously unknown and extremely potent inhibition of tumor necrosis factor (TNF)-[ch945]-mediated inflammation.<<<  http://jpet.aspetjournals.org/content/327/2/316.full.pdf

    You would think that TNF blocking drugs, like the one your friend's friend was taking (remicade) would be effective against CH, wouldn't you?  I don't see any studies of that, for any of them (enbrel, humira, cimzia, simponi).  In fact, there are reports of 5 people developing CH within a month of starting remicade: http://www.ehealthme.com/ds/remicade/cluster+headache

    Of course, the percent of people reporting CH after starting remicade is about the same as the percentage of people with CH in the general population, so it might be meaningless, but it's interesting to read the symptoms listed by people who report getting headaches from TNF blockers: http://www.medhelp.org/posts/Arthritis/TNF-Blockers-and-Headache----Humira--Enbrel--Remicade--etc/show/324130

    If I can say so, the "vitamin D3" anti-inflammatory regimen is also tackling this TNF issue.  D3 and fish oil, the core active elements in that protocol, are both TNF blockers:

    >>We found 1alpha,25-(OH)(2)D(3) could significantly suppress TNF-alpha<<: http://www.ncbi.nlm.nih.gov/pubmed/20722932

    >>There was a significant inverse exponential relation between TNF alpha or IL-1 beta synthesis and mononuclear cell content of eicosapentaenoic acid (EPA), an n--3 fatty acid derived from ingested EPA (fish oil) or metabolism of ingested alpha-linolenic acid (flaxseed oil).<< http://www.ajcn.org/content/63/1/116.short

    I realize that your excitement is more related to the potential general healing powers of psychedelics.  Just offering all this in case it leads you anywhere worthwhile.

    As for your actual question -- >>The only research question that this is bringing up for me, and I would love anyone's input on is, "What factors in the human body cause a rise in TNF levels?"<< -- the only answers I have for now are either useless -- it's plainly in many cases a genetic predisposition -- or essentially circular -- things that cause inflammation (by activating, or "degranulating," mast cells) raise TNF levels, and increasing TNF levels cause further increases in TNF levels. >>Activated mast cells are source of inflammation. Large amounts of TNF-[ch945] are quickly released by stimulated mast cells. All the cells involved in inflammation have receptors for TNF-[ch945] and are activated by it to synthesize more on their own. This positive feedback quickly amplifies the response.<< http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/I/Inflammation.html#Tumor_Necrosis_Factor-alpha_%28TNF-a%29

    >>Mast cells can be stimulated to degranulate by direct injury (e.g. physical or chemical [such as opioids, alcohols, and certain antibiotics such as polymyxins]), cross-linking of Immunoglobulin E (IgE) receptors, or by activated complement proteins.<<  http://en.wikipedia.org/wiki/Mast_cell

  6. Related to what Ron just said, I've been thinking that maybe if you identified some specific research questions you wanted others to help you with -- even if it's just finding references for you to make sense out of -- probably some of us would be glad to do it.  (Or I would, at least.)

  7. [Edit: I see that Lt2 has already responded while I was laboriously composing this. His simple answer is about the same as my laborious one.]

    I haven't wanted to stick my nose in here with any complexities, because I think the simplicity of Lt2's method deserves to be tested on its own. It works for him, and if it works for others, then you've got something important.  So, I'd be inclined to stick with Lt2's advice to anthony: Do it the simple, "clean" way if you can, and see what happens. (An additional very small caution in this regard at the very end.)

    Building on the comments of several others here, and saying that I'm no expert at all but I've done a whole lot of reading, I'll just say these things:

    The articles that shocked posted suggest that it's the effect of GABA on sleep centers that treats CH.  (I'm talking about GABA in the brain -- as Lt2 has said, there's at least an open question about whether GABA supplements even cross the blood/brain barrier to reach those sleep centers.)  Every single thing in Ricardo's Gaba Ease is "gabaergic," affecting GABA in the brain in some way (there are a lot of ways that GABA is affected--increasing it or reducing it, for example). Valerian is particularly so, but so are hops, melatonin, and theanine.  (In contrast to GABA supplements, these things do cross the blood/brain barrier.) That's why they're in there.

    Here are some citations about all that, to give you an idea:

    "Evidence that the beta-acids fraction of hops reduces central GABAergic neurotransmission": http://www.ncbi.nlm.nih.gov/pubmed/16920300

    Valerian: http://ods.od.nih.gov/factsheets/valerian (down the page, under "How does valerian work," third paragraph)

    And many of the drugs used for CH increase GABA in the brain.  This includes neurontin (gabapentin), topiramax, valproate, and depakote.  Neurontin became favored because it acts most quickly (within 30 minutes) to raise brain GABA levels.  Here are a couple of citations about that:

    “Topiramate increases brain GABA”: http://www.neurology.org/content/52/3/473.abstract

    "Gabapentin raises human brain GABA in 30 minutes":  http://cds.ismrm.org/ismrm-2000/PDF1/0014.pdf

    As many know, the early tests of neurontin against CH had very impressive results: http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2982.2001.00260.x/abstract

    The authors of that last study say: ("We hypothesize that the gabaergic action of gabapentin, perhaps combined with other mechanisms, such as calcium channel blockade, may be responsible for its remarkable effects on cluster headache.")  Too bad about the %&&*(&*( side effects.

    So, going back to what Mystina said, it also seems to me there's plenty of reason to suppose that managing GABA in the brain might help with CH.  I'd love to know why Lt2 did not choose the over-the-counter formulations of GABA that are compunded so they do cross the blood/brain barrier --picamilon and phenibut -- but I'm sure he had good reasons.  And, again -- it's working for him.

    Because of some things that have been mentioned in posts in this thread, I present a very small, probably inconsequential, caution.  In one of the follow-up letters that shocked has linked to, a neurologist points out that because about 30% of people with CH also have sleep apnea or other sleep disorders, it is not always wise to mess too strongly with their sleep centers.  Of course, he's saying this in the context of the substance used in the experiment, sodium oxybate, which is a strong "hypnotic" with "potential for abuse," and so it might not apply to simply taking GABA supplements at all.  But since Lt2 has mentioned sleep benefits a few times, I though this might be an addition to the database of things to be considered. Here's a link to that short letter (the second letter on that page): http://www.neurology.org/content/77/1/67.abstract/reply#neurology_el_43011

  8. From a longer post, which is down the page a bit at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1317418320

    >>>. . . . I guess everyone already appreciates this, but (as I understand it), it must not have been easy for Entheogen to keep this drug [bOL] focused on CH, since clinical trials on people with migraines would reveal the existence (or non-existence) of a much huger market, but would not demonstrate that it works for CH, hence would only mean that CH was available "off label" for CH, which I think would have implications for insurance coverage for CH use.  Just guessing here, but if I am understanding this correctly, then some people have already sacrificed a lot of short-term financial gain in order to serve people with CH.<<<

  9. joe, oxygen is the most important thing you can have to abort your headaches.  This shouldn't even be a discussion with your GP: just get the prescription and get started.  More here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    As Ting says in her post, "busting" is using these agents to stop cycles or prevent cycles.  It can help with aborting them, but stopping/preventing them, by using effective doses spaced about five days apart, is generally preferable.  It is strongly believed here that triptans will block the effectiveness of busting, so (for purposes of busting) that's where the oxygen comes in, enabling you to get along between doses without resorting to meds that block busting.

    HBWR is a pain to work with.  If you want to bust, you can buy RC seeds relatively inexpensively.  You might want to look over the files that tommyd has created to maybe get a better sense of all this.  They're in the "Clusterbuster files" section of this board.  Here's a general one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

    Here's one on seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    Here's one on things that block busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    In my opinion, if the Frovatriptan is in tablet form, it probably won't help you unless your headaches are very predictable and you can take it in advance.  If it's injectable it might help more . . . but it sounds like maybe you've experienced some of the side effects of triptans.  Others will have wiser things to say about this than I do.

    Strongly recommend that you get the oxygen ASAP.  I know virtually everyone else here agrees about that.  If you don't want to bust (or even if you do) and you haven't tried it yet, the anti-inflammatory "vitamin D3" regimen has helped quite a few people, and even though you've already tried a lot of OTC remedies, it could be worth a shot for you. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

  10. hey joe, welcome, and thanks for posting and standing by.  looking forward to your input.  as you probably know, paper is generally considered the best busting agent. but if you conclude you're using too little to really make a long-term difference out of reluctance to "trip," you might consider seeds, from which you can get a stronger dose (than a very low dose of lsd) without psychedelic effects.

    are you taking no pharmaceutical meds right now?  you have oxygen?

  11. i think i answered this at another thread, anthony, but brown is the color they commonly are when purchased.  i've bought a lot of seeds from a lot of different places, and they always have been brown (and they have worked).  sometimes a few are kind of very dark brown or black, and we usually toss those away, but i don't even know if that's necessary.

    at that other thread, ricardo said he didn't think you could get green seeds, because those would be fresh seeds.  i know agent orange was one person who talked about using green seeds, and i never trifle with AO's knowledge, but i was puzzled when he wrote that since as i say ours have always been brown and, as i say, they have worked.

    shaman's garden is not an unusual place for people to buy from.  people here have reported getting good seeds and seeds that did not seem to work from virtually every place that sells them.  there's no reason the ones you have should not be good, as long as you've stored them in a reasonably cool, reasonably dark place since you bought them.

  12. No, there are no current trials of BOL-148 (which I think is what you're asking about).  It's hoped that next year there might be some.  To be informed when trials of BOL are underway, you should register here: http://www.entheogencorp.com/community/

    Sorry there isn't better news about this.  I can only say that at the Clusterbusters conference this year, Dr. Halpern was optimistic about trials next year.

    Do you care to say anything more about seeds, just in case you were somehow missing something when you tried them?

    Also, you might consider the anti-inflammatory approach (the "vitamin D3" regimen, as it's sometimes called), which has helped a lot of people.  You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    And some folks here say they've had very good results from the licorice root method: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

  13. Skip, there's a very good illustrated discussion of tank types, regulators, and other topics here: http://morrobayphotos.com/ch/O2primer.htm

    More extensive discussion here: http://www.clusterheadaches.com/O2/index.html

    You can find information in the last section here about places where you can buy what you need: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790.

    You can probably buy a good regulator where you get your tanks.  Quite a few people use the one illustrated on this page, second row, far right, "Oxygen Regulator."  I'm assuming that it or something like it can be purchased at most welding oxygen places, or maybe there's a Harbor Freight store near you. This regulator does not provide an lpm reading, but you can just open the valve to the flow rate you need.  http://www.harborfreight.com/catalogsearch/result?keyword=regulators

    If you're considering a more complex setup, maybe using a demand valve, there's a lot of good information at ch.com.  Here's one thread, but you can use their search engine to find more: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1226213955

  14. I wonder a CH is actually simply down to oxygen levels in the blood rather than all this about a deformed hypothalmus and what not.
      Just another piece here for your inquiring minds, AO and Hejada. While it seems completely logical that the hypothalamus is involved (given cyclical regularities, among other things), Kyle posted an article here earlier this year that contained this, based on visual brain studies of people with CH:

    >>>Although prior research with VBM and positron emission tomography found patients with cluster headache had abnormalities in the hypothalamus—proposed as a key component in the pathophysiology of cluster headache—the current study showed no such abnormalities.

    “Dr. Filippi’s poster muddies the waters a little bit, because his group didn’t find the same abnormalities in the hypothalamus that had previously been reported,” said Stewart Tepper, MD, professor of neurology, Cleveland Clinic, Lerner College of Medicine, Ohio, who was not involved in the study. “The increasing sophistication of brain imaging, however, will allow us to continue to gradually work out the entire anatomy of the efferent outflow of cluster headache and learn how best to treat it.”<<<

    The thread is here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1311825574

  15. You're not alone, "citizen scientist" Hejada: “Immediate Improvement of Cluster Headaches after Sexual Activity” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/?tool=pmcentrez

    Although from a recent thread here, I would say you're in a minority.

    Vigorous physical activity (running, calisthenics, etc.) does help some people abort an attack.  (If I'm not mistaken--though I am mistaken on myriad occasions-- I think that's how the efficacy of oxygen was first realized.)

  16. Hejada, I think you've received the central advice subscribed to by most people here.  RC is more than "interesting": for many people, it prevents not just attacks but whole cycles.  To answer your question, the general approach is to start taking it at the very first sign that a cluster period is coming.  Some people "maintenance dose" during the year, generally every few months. Some people do it more often and some less often.  Once a cycle has started, it takes more doses to break it -- but it will almost certainly do that.

    Here's a paper on the effectiveness of LSA, which is the active ingredient in RC: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

    And here (again) is a specific file about seeds/LSA that Bejeeber linked you to (although, as Renee says, the more you read the better off you are):


    Some people think RC is a kind of second-class treatment compared to psilocybin mushrooms, but there is no evidence that that is true.  Some things work better for some people.

    Your challenge will be the "detox" that's required before trying them. To detox you need something that will reduce the pain for those five days (or maybe you don't--you've made it through many cycles already with nothing that really worked, and I can say that my daughter went many years without taking any effective meds at all for her (misdiagnosed) CH).  The D3 regimen (which I linked to in my first message to you) has worked well, and quickly, as a preventive for at least 70 percent of people who have tried it.  And if you get oxygen, it is almost certain to work as an abortive. In the "oxygen page" that I gave you a link to above, you can link to the formal journal article about O2 effectiveness (which might be most impressive to your doc), and you can see that O2 is the #1 recommended abortive according to European medical standards.  Doctors can be incredibly dense about this, but I always figure the more ammunition the better.

    While there are some people here who think that quitting smoking will help with your CH, I think it's fair to say that there doesn't seem to be any correlation.  People quit and keep getting them, non-smokers get them . . .  Even with weed, as most people find that it makes things worse, there are some reports (and even one journal article, about one person) that it works as an abortive.  Our friend Agent Orange has said it well, that we are "citizen scientists" here, working together to find the best courses of treatment.

    Finally, you should probably sign up at the site of the company that is trying to bring to market BOL-148, which seems like an exceptionally powerful antidote to CH.  They have said they might be doing clinical trials in Europe (and the US) next year, and you might want to be alerted if that happens.  http://www.entheogencorp.com/community/

  17. h'88, sorry you had to be here, but you're at a good place.

    Some home remedies:

    OXYGEN, the best friend of most CH sufferers -- You gotta get it ASAP:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    D3 regimen -- Has helped a whole lot of people quickly: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 (Be sure to read about interaction with verapamil.)

    Quickly drink an "energy drink" (RedBull, Monster, etc. -- high in caffeine and taurine) at the start of an attack

    Melatonin: roughly 9-12 mg. about half an hour before bedtime

    And of course busting with seeds or other substances. Great results, no side effects (though illegal, and it's best to stop taking verapamil and sumatriptan before you "bust."). A lot to read here on that subject, in the "Clusterbuster files" section.  Maybe start here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

    Ask questions; you'll get help.

  18. Yes, I am doing the D3. According to the thread on it , I still need to add about 3000 more units of D3 to make 10,000 mg per day. Will do that today.
    Spiny, below is the full D3 regimen as summarized by "Batch."  You need to do the whole thing to find out whether it's working for you.

    Also, he says this regarding verapamil: >>If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, the serum half-life can be in a range from 4.5 to 12 hours.  Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil.  Calcium gluconate is also used to treat reactions to oral verapamil.  Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 hours.  Again, discus this regimen with your PCP, neurologist, or cardiologist to work out an optimum dosing schedule.<<

    Strongly suggest that you read the whole summary at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    Also, you don't mention energy drinks (RedBull, Monster, etc.), though maybe you have mentioned them before.  Downing one quickly at the first sign of a CH attack helps many people, and can make the O2 more effective.

    Elements of the D3 regimen:

    1. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360

                                     mg/day, DHA 240 mg/day)

    2. Vitamin D3 *        - 10,000 IU/day

    3. Calcium **           - 500 mg/day (calcium citrate


    4. Magnesium            - 400 mg/day (magnesium citrate or

                                        magnesium gluconate)

    5. Vitamin K ***        - 120 mcg/day (2)

    6. Zinc                     - 10 mg/day

    Note that many formulations of calcium citrate include magnesium, zinc, and vitamin K.

    This regimen can be taken any time of the day, but it's best taken with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with with a little honey.  Honey is a natural source of Boron, which is listed as one of the "cofactors" along with magnesium, vitamin K and zinc.

  19. wait . . . unlikely means not likely?  then yeah, that's what i meant!  learn something every day here.  (now corrected)  eggcellent catch, Bejeeber, eggcellent.

    i think spiny said somewhere that she was doing the whole D3 thing, but now i figure i'm unlikely likely to be wrong about that too.  :-[