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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by bleauberry on June 21, 2010, at 20:15:03
My mother forwarded me a series of emails from a longtime friend of hers. The woman had been battling chronic fatigue, depression, and brain fog, for so long. Doctors and medicines didn't help much. A battery of tests for all kinds of viruses...Epstein Barr, Yuppie Flu, and a bunch of other stuff...all negative. Vitamin and mineral status looked fine. B12 was well within the normal range, a bit below that mid point.
Out of curiosity and desperation she decided to try a B12 patch she had bought a year earlier but never used. Her husband put the patch on her behind the ear lobe. 1000mg. Within 5 days she was the best she had been in years. Close to cured. It continues.
The doctors never figured that maybe some people need their B12 status at the top end of the range. Her best guess too. Improvement was profound.
Also of interest was that neither oral B12 or B12 shots did the trick. It had to be transdermal. The patch.
Anyway, just thought I would throw that out there. While you and me bang away at potent almost nuclear bomb strategies to beat our diseases back, sometimes the answer is in something ridiculously simple that everyone overlooked.
For any kind of testing...adrenals, thyroid, vitamins, minerals...I think the same holds true. That is, if chronic disease is present, being within the normal range is not good. It needs to be at the top of the range. Also important is the vehicle of delivery, which is only discovered by trial and error. As in this case, where neither megadoses of B12 or shots were of any help, but the transdermal patch was a near cure.
Posted by Hombre on June 21, 2010, at 22:34:42
In reply to Thought I Would Share a Success Story, posted by bleauberry on June 21, 2010, at 20:15:03
Most interesting.
Perhaps a worthwhile project would be to put together a super-algorithm of all potential treatments and the order in which they should be considered. I think people would respect and more thoroughly investigate things like nutrition and exercise if they were properly ranked against other treatment options. It might also give hope if medications were giving only partial or side-effect ridden results. Perhaps the algorithm would require several parallel paths given the number of variables.
Organizing all the various conventional and alternative treatments into a comprehensive plan of action is probably near-impossible when one is in the throes of depression and cognitive dysfunction. It tends to be easier to focus (or even obsess) on one type of treatment e.g. medication because you can use that particular paradigms measures to figure things out e.g. use PubMed to read the results of studies.
I used to be sort of hippy-dippy and did lots of meditation. I was all for alternative medicine. Then I studied physiology and after several years of taking on this sort of thinking I really didn't believe in what I had done despite the concrete results I'd achieved (I are dumb). Only later was I able to to compartmentalize my thinking so that I did not feel like I was betraying my left-brain, so to speak, by believing in things that are basically not conducive to scientific research.
Posted by janejane on June 22, 2010, at 10:22:11
In reply to Thought I Would Share a Success Story, posted by bleauberry on June 21, 2010, at 20:15:03
Thanks, Bleau. It's an encouraging story, yet also discouraging since she pretty much found her answer by accident, and despite evidence suggesting that B12 wasn't a problem. There are so many factors that can contribute to illness, it's frustrating. I like Hombre's algorithm idea, but don't see it being applied to any great degree, in the foreseeable future. I often feel we're looking for needles in haystack, and in a pretty random, undirected way.
Still, thanks for the glimmer of hope that things can sometimes turn out OK. I'm happy for your Mom's friend. You'll have to keep us updated on her progress.
Posted by janejane on June 22, 2010, at 10:29:57
In reply to Thought I Would Share a Success Story, posted by bleauberry on June 21, 2010, at 20:15:03
I forgot to ask, what were her numbers? Do you think all of us should get standard vitamin and mineral tests and shoot for the upper levels of the standard reference ranges?
Posted by morganator on June 22, 2010, at 17:17:10
In reply to Re: Thought I Would Share a Success Story, posted by janejane on June 22, 2010, at 10:22:11
Well I am in the beginning of thyroid treatment with Synthroid(not my number one option but I'm willing to give it a shot). After a year of my thyroid testing in the low range of normal, my doctor finally decided to try thyroid treatment. My psychiatrist actually said that people are treated with thyroid meds like Cytomel to get their thyroid in the upper part of normal range to see if it helps lift them out of depression.
If thyroid treatment helps me feel a lot better and relieves many of my symptoms-fatigue, cold sensation, headache, raspy voice, and muscle aches/stiffness-this is one example of treating something even when it is normal range.
On a side note, I have been taking Holy Basil(New Chapter's brand) the last few days and wow I think I feel much better. It could be that Synthroid is starting to help but I really think I have noticed a difference with holy basil. Just wanted to throw that out there for anyone wanting to try something new to add to their cocktail.
Posted by bleauberry on June 22, 2010, at 17:31:57
In reply to Re: Thought I Would Share a Success Story » bleauberry, posted by janejane on June 22, 2010, at 10:29:57
> I forgot to ask, what were her numbers? Do you think all of us should get standard vitamin and mineral tests and shoot for the upper levels of the standard reference ranges?
Two tests:
2008 B12 379 (range 243-894) pg/ml
2010 B12 364 (range 211-946) pg/mlAs you can see, another complication is that supposedly normal ranges are prone to variation depending on the lab or the time in history. In any case, her levels were within normal range and it was shrugged off as a non-issue by the doctors.
I don't have my actual numbers handy, but my two most recent B12 tests were at least as low as hers or lower.
Another indicator of chronic hidden disease is low vitamin D, despite taking vitamins, dairy, and sunshine. If D is low, something is wrong.
Posted by bleauberry on June 22, 2010, at 18:06:48
In reply to Thought I Would Share a Success Story, posted by bleauberry on June 21, 2010, at 20:15:03
I agree with what everyone has said. An algorithm is needed. I actually don't see that as being very difficult.
What bothers me is that so many of us become entrenched in the small world of psychiatry, which really has nothing to do with curing any disease that is causing mental symptoms, while ignoring the bigger world of healing. We ignore it because to us it is baffling, unknown, and out of our comfort zone.
But for that matter, every psych treatment is baffling and experimental. It's just that we are comfortable with it because it is a small relatively manageable spectrum when compared to the vast world of supplements and plants. For sure, a small minority of people experience miracles in psychiatry. I see it as kind of like Las Vegas. A few big jackpot winners and all the masses think it will happen to them if they just stay at the table long enough.
I've seen many people here attest to long devotion to fads, herbs, supplements, and such, with dismal results. I could say the same thing for myself. I have a backpack completely overflowing with bottles of things I've bought and tried over the years. Every kind of herb and oddball supplement you can think of.
But B12 patch isn't one of them. A new one! Cool.
I guess what I am saying is, no matter I have a hundred failures behind me, I'm always game to keep trying. Never give in to the enemy.
As this lady, and so many others out there, have proved that luck can happen. The problem is, luck will never happen without persistence, experimentation, and venturing outside the comfort zone.
The sad part is, the highly educated people we call doctors, the ones we trust our lives to, really don't know a whole lot more than we do. Well, they do, just not in the things that actually bring results. Broken bones and such, easy. But when we get into things like depression and mystery diseases, forget it, they have as many questions as we do.
I wish in this one particular example it had been the doctor that said B12 was low normal, let's see what happens if we get it to high normal. But it wasn't. The patient made the decision by herself at home. That part is kind of sweet and sour. Sweet because of the happy ending, sour because the ones being paid enormous dollars for that result were impotent when the answer was staring at them in face the whole time.
Now, her disease, whatever it is, is not cured. But, whatever the disease is doing to mess up her biology, she has built a bridge over that roadblock. She and the disease can now co-exist without symptoms.
Posted by Hombre on June 22, 2010, at 19:44:16
In reply to Re: Thought I Would Share a Success Story, posted by bleauberry on June 22, 2010, at 18:06:48
Wow. That sums up my thoughts to a T.
People systematically give meds a chance, admit that everyone responds differently to them, but almost haphazardly try supplements and herbs with much less patience. And I almost never hear anyone credit exercise, a strict diet or any other seemingly lowly form of self-care. Not to say that these alone will be enough, but can we honestly check them off as having failed? Hence the need for an algorithm.
Then there are the victims. While I am certain that there are a lot of people that *have* been put in worse shape by careless doctors with loose prescription pads, I feel like I am not hearing a comprehensive list of things tried to undo the recklessness or inadvertent mistakes of said doctors. I'm not issuing blame, I'm more upset at the way information is weighted. Maybe that's because this is a meds board, but when it comes to the people, the real people who post here, they need healing. Healing to become whole. Healing at every level of their being.
I think the great fear is that the meds won't work. I've had this fear. If all those billions of dollars and thousands of super intelligent people can't fix it, then who can? And when the meds do work, but only sort of, are we to believe that that's it? Is this the best I can get? Should I even be on them if I can't poo, can't get it up, can't sleep, can't feel? What is my safety net if I get off the meds? If there were other sections of a larger algorithm to explore, I'd feel a lot better if meds did not end up as shiny as the adverts and industry-funded studies promised.
Posted by janejane on June 22, 2010, at 20:39:30
In reply to Re: Thought I Would Share a Success Story » janejane, posted by bleauberry on June 22, 2010, at 17:31:57
> > I forgot to ask, what were her numbers? Do you think all of us should get standard vitamin and mineral tests and shoot for the upper levels of the standard reference ranges?
>
> Two tests:
> 2008 B12 379 (range 243-894) pg/ml
> 2010 B12 364 (range 211-946) pg/ml
>
> As you can see, another complication is that supposedly normal ranges are prone to variation depending on the lab or the time in history. In any case, her levels were within normal range and it was shrugged off as a non-issue by the doctors.
>
> I don't have my actual numbers handy, but my two most recent B12 tests were at least as low as hers or lower.
>
> Another indicator of chronic hidden disease is low vitamin D, despite taking vitamins, dairy, and sunshine. If D is low, something is wrong.
>To clarify, did her numbers not reflect the apparent success she had with the patch? It seems like they should have gone up between 2008 and 2010.
By the way, my holistic doc considers anything below 400 to be too low even though the lab she uses has a reference range of 200-1100. My husband's level was under 400 so she told him to take 1000 mg/day sublingually and now it's closer to 600. One question I do have... I thought B12 was stored, but she said he should take continue to take it since some people just don't absorb it well. Thoughts on this? I felt that maybe he could stop after a while. I think she was confusing it with other B vitamins that aren't stored.
Something I'm having continued trouble with is copper. I've tried copper sebacate (supposed to be the better than other forms), fairly high doses and my serum copper results continue to suggest deficiency. Ceruloplasmin is low normal so I'm a bit worried about the possibility of excess in the organs (similar to Wilson's). Do you think a nutritionist could help me figure that out? Doc is stumped.
Posted by Zyprexa on June 22, 2010, at 23:59:26
In reply to Thought I Would Share a Success Story, posted by bleauberry on June 21, 2010, at 20:15:03
I strongly belive in the use of B vitamins. Although the pills work just fine for me. Taking a B-100 a day improved my depression and brought my nurve endings back to life, I feel more here than before the B-100. I think the B vitimins work for me because I've heard that alcohol removes B vits from system.
Posted by Phillipa on June 23, 2010, at 0:06:22
In reply to Re: Thought I Would Share a Success Story, posted by Zyprexa on June 22, 2010, at 23:59:26
I think you naturally eliminate too many B vitamins through urination. Phillipa
This is the end of the thread.
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