Hello mrsd, theresej and rose,
It appears that there might be some misunderstanding about why I started this thread.
You will have noticed that I have tried to avoid giving other members specific advice about their conditions. I have tended to be very cautious; for example, I advised Monica:
Quote:
Search for a doctor who specialises in nutritional or holistic medicine.
Read as much about B12 deficiency as you can, especially the findings of researchers, starting with reference G1 on my web site.
Before accepting advice that you either do or do not have a B12 deficiency, ask “what is the evidence?”. Remember that is that there is currently no agreed “gold standard” test for vitamin B12 deficiency. You will have to make a decision based on the imperfect tests that are currently available.
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This response should not be taken as a criticism of the fact that others here offer more specific advice. It should be seen in the context of the different approaches that we have taken to this problem; we are all on the same side.
All of you are probably in a far better position than I am to offer specific advice to other members of this forum, and to deal with their many problems in a very understanding way.
I have chosen to tackle the problem at the source by taking on the pathologists and the medical media. My background in applied science and engineering, specialising in scientific instrumentation, has allowed me to take a very analytical approach. As I said to one lab, I know garbage data when I see it.
As I said in my first post on this thread:
Quote:
I claim that vitamin B12 deficiency is misdiagnosed, causing unnecessary suffering in thousands of patients, because:
- Pathology labs recommend, and doctors order, the wrong tests
- The labs quote incorrect reference intervals and cut-offs
- There are frequently very significant analytical errors
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By exposing errors in pathology, as well as the arrogance, apathy and greed, I hope to force a change in the system. To do this, I have used two methods:
- Publication of my findings regarding poor performance by the labs, supported by references to expert evidence
- Original research to establish how the currently available tests perform as I become deficient in vitamin B12
So, when I am asked for specific advice, or when someone says that they have diagnosed themselves, I must be very cautious. I would much prefer to allow you to deal with that.
I hope that my web site, especially the
References page, can be used as a resource by others.
What I do feel comfortable advising people about is the following:
- What sort of doctor to look for
- Where to find reliable information, including expert reports
- Which tests are, or are not, useful for diagnosis of B12 deficiency
But you are doing that extremely well already.
I am more likely to be able to assist with the more technical questions. I can comment on technical aspects of lab reports and testing methods, including:
- Whether or not a difference between two results is statistically significant
- The correctness and usefulness of interpretation data, including "normal ranges" and cut-offs for any of the current B12 tests
- Reliability of some testing methods
If you have visited my web site, you will see that I am up against very serious opposition:
- Pathologists deny that there is a problem
- Medical media refuses to publish paid ads for my web site
- Doctors' organisations refuse to inform their members
Pathologists deny that there is a problem
The RCPA (Royal College of Pathologists of Australasia) changed their RCPA Manual in response to my web site. They now directly refute my claims, and the findings of experts, at the expense of patients. Here is what RCPA Manual now erroneously claims about Vitamin B12 deficiency:
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Methylmalonate, plasma, urine, homocysteine or transcobalamin have not been shown to be better predictors of response to treatment than the total serum B12 concentration. Their levels fluctuate with time and neither predict nor preclude cobalamin responsive haematological disorders*.
* Laurence Solomon: Blood 2005: 105(3), 978 - 985
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As I say on my web site, this is misquoted, and taken out of the context intended by Solomon.
One lab set their lawyer on to me when I told them that I was investigating:
Quote:
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Any attempt to tarnish the reputation of my client will be dealt with appropriately.
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Medical media refuses to publish paid ads for my web site
None of the four mainstream medical publications would agree to publish an ad for my web site. One set their lawyer on to me when I questioned their decision.
Doctors' organisations refuse to inform their members
I wrote to all 119 Divisions of General Practice in Australia; they represent almost all of what we call general practitioners, primary care physicians. Only 6 agreed to inform their members about the problem.
The local reactionary and conservative establishment is not all that I am up against. The new test that I am currently researching, holotranscobalamin, is marketed as a kit for "Active B12" by Abbott Laboratories. That company is worth about 100 billion dollars; they could crush me like a bug. I intend to publish my results regardless. A few years ago, they were fined 100 million dollars for inadequate quality control; that amounts to ten days profit.
In an editorial in Blood journal, my reference G21, Ralph Green said:
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Solomon’s provocative findings convey an apt and timely caution and may shake up present complacencies. Many have come to accept at face value the glib messages and mantras conveyed by assay kit manufacturers
and the enshrined dogmas that permeate the literature that the laboratory identification of clinically significant cobalamin deficiency is a “cake walk.” Indeed, it may be time to carefully reassess a field that is perhaps in a state of confusion and disarray
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I hope that my objectives are now clearer; I am here to offer my research, both from the Internet and my own original data, to help others.
Please post any comments or questions to this thread. If you wish to contact me for a private discussion, please Email me from Paul in the Contact page of my web site at
http://www.paulgolding.id.au/.
Paul