[Thelma]

There are a lot of posts all over these forums where we are being very less than carefull with what we are telling people about their various symptoms and giving our diagnosis to them with suspicions of other diseases to look out for and to be tested for.

There is no way humanly possible to know who you are talking to nor what their upfront medical problems are.

You can help in that you relate what your own personal problems have been and how you related to treatment but it remains a black hole you are talking to to try and tell them what they should or should not do.

In my own condition to tell me to fall back on nutrients is to sign my death warrant. Nutritional supplements are in that same avenue of non usage along with even every day spices we use.

I know some here think that the patient is the one with the final decision and that is true but to instill in them the distrust of the medical profession and to insist they try anything without the consultation of their doctor FIRST AND FOREMOST is to take on your shoulders the responsibillity whatever the outcome will be.

The very fact that the various medical professions take years of medical training certainly should allow you the thought that they see the human being in front of them and know all the related facts pertaining to them while we see them on a screen and can not even be sure they have any ailment at all let alone the one they are asking for help with.

Yet we recommend various vitamins and supplements as fast as they ask.

This is not good

Think about it and realize it is a person behind that screen who may just need to go back to their doctor or see another one to find help.

It can't come from us.

Hints on equiptment yes

Personal experience yes

Advice on mineral or nutrients or even the most one seen here B12 are a no no

Sorry but if only one is hurt with loose advice it is one too many for me.

[CoolAngel26]

I have to agree that we should only talk about topics in general terms,and not share personal info.I often wonder if we are protected enough...

[Thelma]

It is only ourselves that can protect us although I don't see the dangers here.

It is our protecting others that are new here that has me concerned.

Do you think we are worrywarts lol

[CoolAngel26]

Originally Posted by Thelma

It is only ourselves that can protect us although I don't see the dangers here.

It is our protecting others that are new here that has me concerned.

Do you think we are worrywarts lol

Naah...now I know several worrywarts,and I don't think we fit that category,Thelma..At least,not yet.

[Chemar]

Hey Thelma

I absolutely agree with you that everyone should always be very careful about not converting personal experience and knowledge gathering into making diagnosis or assumptions about other people's conditions.

Where we share info and experience here and on whatever other health forums we participate in, yet it can never take the place of consulting personally with a qualified healthcare professional.

And yes, we should all be very careful in not allowing sharing of personal information to become an attempt at diagnosing someone else or dispensing medical advise to them.

A very fine line, and one we do always need to be reminded not to cross!
I personally think the members here are generally very respectful of this

I do think tho that sharing our experience and knowledge is nevertheless a very valuable thing....because sometimes it can provide someone with a nugget of information to take to their physician to consider, and that in turn can make a pivotal difference in their health

That was true in the case of my own son...where his intolerance of every medication that the docs tried him on meant that we had no viable treatment options for him, and his prognosis was not good. If I had not come across someone sharing info on nutritional methods that had helped her child, I shudder to think how different my son's life would be.

However
the CRUCIAL issue is that I took that information to our doctors and sought their advice and guidance and in that way we were able to bring a turnaround for my son.

So where we should be very careful, yes, not to attempt to "diagnose" others nor to "prescribe" treatments for them, still we should also not feel stifled to share personal experience as that too can be valuable to someone somewhere, provided they use that information wisely and filter it through the guidance of a qualified healthcare professional!

Definitely a fine line, but one that we do need to be frequently reminded of, that sharing experience and knowledge and ideas and opinions does not equate to making diagnoses nor prescribing medical advice

[Curious]

why is advise on minerals or supplements a no no in your opinion thelma?

lack of potassium almost killed my mother.

[Jomar]

I hope anyone reading any of our posts realizes that it is always given in the context of our own opinion. Even if it is something our doctor has told us- it may not apply to everyone else.

We can only really offer suggestions of alternatives or options regarding treatments, meds, vitamins, ect.

It is up to the individual to process that information by researching it more themselves and/or talking with he appropriate doctor, nutritionist, naturopath, therapist, ect.

Although I'm pretty sure most MDs do not study very much about nutrition, supplementation or the majority of alternative health methods.

I enjoy reading about new things and doing some follow up searching on my own - to verify the new info for myself.

I have found and learned so many more good things on the forums and internet that I would never had found otherwise- from doctors or library books.

[loisba]

Good point, Thelma! And Chemar, I like the viewpoint you expressed, a nice balance. We definitely don't want to be diagnosing, but we do want to offer our own experiences, helpful sites, suggestions, insight. Otherwise we become no more than a shoulder to cry on. Which is good in itself, but if I've got a problem with my MG, I not only want a sympathetic ear, I want to know what others who had a similar problem have found helpful.
I feel I've got enough smarts not to blindly accept the diagnosis of anyone on this site, but I do agree that not every visitor will understand the dangers inherent in letting a layman diagnose their condition and treatment. So we do need to be cautious in how we word our suggestions, our experiences, our information. Not "Do this!", but "For what it's worth, this worked for me."

[Idealist]

Thelma...I definitely see the validity in your observations. I'm really glad you brought this up, because I, for one, have never considered it seriously enough before.

Still, I think that I pretty much agree with Chemar's point of view. I went through several doctors who were unable to diagnose my secondary FMS, then found the info I needed to diagnose it myself on these forums. Of course, once I had that info, I went back to my doctor and presented my case to him again with the suggestion that it might be fibro. He sent me to a rheumatologist who confirmed the diagnosis.

I personally take everything I read on these forums as advice only, and nothing more than that. But I can see where some might interpret it otherwise. So I guess I need to be very aware of how I word my suggestions in the future. Thank you very much for the reminder.

Idealist

[mrsD]

I don't know what prompted this post?

<<removed personal info before the internet bots cache it>>

I always provide documentation on the net... I have done so for over 10 yrs...so people will know that the data really exists. The net can be a dangerous place...and I know that very well. And I have been reading and participating on PD on OBT and here.

If you had any inkling of how uninformed doctors can be, like I see every day,
you would embrace knowledge when offered.

For example... most doctors use outdated reference ranges for B12 tests, even today. Only Japan has the most aggressive protocol. And that is because they had a horrific drug accident that led to death/blindness and disability several years ago.. The drug Vioform oral devastated their country.
You can read about it here:
http://www.newint.org/issue095/devils.htm

Here in USA the old values of 200 for B12 are the cut off...but in Japan they treat anyone below 500, with B12. Slowly this is being accepted here in USA as well, to the benefit of many patients.

Here is a very recent paper from NIH about the value of B12 for older adults:
http://ods.od.nih.gov/factsheets/vitaminb12.asp

Recently it has been found that up to 70% of the USA population are deficient in magnesium (poor dietary habits). Low magnesium levels can exacerbate long QT
issues (heart) in those patients taking certain drugs (like methadone), and cause fatal arrythmias. Propulsid and Seldane were taken off the market due to QT side effects and drug interactions. As an aside...Seldane was extemely close to OTC status here in USA, when a professor at Georgetown Univ. discovered the QT events killing people, that were never reported. This led to Seldane and its generic being removed from the US market. (but it is still available in 3rd world countries). At that time Seldane was over the counter in Canada for several years! Imagine all those doctors who had no clue... and all the deaths that could have been prevented?

Low magnesium potentiates this risk, and is significant. Low magnesium impacts osteoporosis, chronic pain, muscle cramps/restless leg syndrome, insomnia and ADHD. I have a magnesium thread on the vitamin forum here with research papers, to illustrate these effects.
Low magnesium is a common effect of chemotherapy for cancer.

Here is a medical reference that details the nutrients that drugs can deplete in patients...leading to side effects and loss of quality of life: This book was compiled from papers from around the world published on MedLine.
http://www.lexi.com/lexistore/market...0000/index.jsp

Using nutrients wisely can increase the quality of life for many people who suffer from chronic disease. Keeping up with the newest information is what the internet can provide at its best.

And you know tomorrow I will be voting for a governor in my state that supports stem cell research/use.