Forget to Live: Testing and BFS

[NimbleKabob]

If I didn't know you better I would put this sentence down to dis-ingenuity. Of course for some people a test can make a difference. Your neighbour was having trouble breathing which is rather serious. For those of us with BFS that is not the case, we are in no imminent peril. I am not talking, as you well know, about taking tests, but being so taken with tests that we forget to live.

We have all the "the tests" and what was the result: slightly elevated blabbideeblah, a 0.0005 differential in the such 'n such and other nebulous and ambiguous false/positives and positive/negatives, which leads to yet more checking and more speculation about why we feel ill.

What truth about our bodies are we looking for, and what does VGKC autoimmune response really mean? It is just a made up acronym to hide a lack of knowledge, the medical profession is full of such terminology. Migolivas has told us he has "mitral valve prolapse," a benign and completely innocuous thing and yet sounds like something significant, even deadly. VGKC is another one of these, "best thing since antibiotics" things, that the bereft medical establishment like to champion. There is a love affair with dishing out percentages and statistics; anything that science might maintain it's sense of Godhood.

Jodi, your words are well thought out and clear. You have a great mind (too intimidating for most men ) and you have the ability to see the big picture. However, the balance I am talking about is not what most people think of, like the meat and two veg of a dinner platter. I am speaking of the startling, life affirming balance that comes when we are awake to vitality that has made this world filled to the brim with living things. It is from that point that we must predicate our lives, and if that includes a test that has been devised through the ingenuity of man/woman then great. From this point of being we will then be able to see clearly how the interventions of man/woman might help or hinder. In other words, we must feel completely well, or pretty close to it, in order to know if we are truly unwell.

We all know too much about our bodies and not enough about our lives.

Basso

 

[EyeoftheWild]

Basso

I take your point. Tests confirm or point to a diagnosis. If we look at the example of the lady with myasthenia gravis she probably had a test looking for an antibody against the aceylcholine receptor. For her a positive test might have made a difference to treatment options. Same with the VGKC test. BFS- it seems- is a syndrome that has a spectrum of presentations and may be more severe in some than others. When other diagnoses are been considered a positive test MAY be important in excluding more serious problems such as MS which may require a more invasive test to diagnosis this condition. I would sooner have a blood test than a lumbar puncture- do you not agree.

As far as your comment on autoimmune problems are concerned I do not agree. There are many triggers that may trigger this response eg infections, toxins. It may also be than 'modern living' and exposure to plastics, toxin etc causes the body to casues the immune system to flare- who knows. It may also be- as you suggest- something else eg psychologic/ spiritual. You have no proof for the latter- there is some proof for the former.

Lance

 

[jodid]

I don't believe I said the cause of BFS, or any other disorder was psychological or spiritual: I certainly did not mean to infer this. Psychologically, spiritually, physically et al; I am almost always talking about the whole ball of wax.

Personally I have extremely good evidence that schuey started the spread of BFS in North America; and because the Queen is still the head of state in Canada I have embraced the devil (BFS not the Queen) with the proper decorum.

You have certainly provided us with a great topic for discussion, and your points are well taken too. We definitely need more of these thought provoking threads. Bravo, Lance.

As regards my bear analogy that was, mostly in jest. I must start adding smileys.

Cheers,
Basso

Jodi, I forgot to say that you have a devestating intellect and any man, regardless of how you look, which I am sure is fantastic, would be lucky to have you as a partner. I mean that sincerely.

 

[jodid]

I've had quite a lot of tests, including a lumbar puncture. And although I'm not in a hurry to repeat the lumbar puncture, I do feel much better having done it than I would if I hadn't. When I first went to the neuro I thought I had MS (and I think he thought so too). I don't think I'd feel confident that I didn't have something horrible if I hadn't been tested.

The testing has freed me from the fear of certain diseases and allows me to take things in stride. So now if I get a new symptom, I don't panic because I know that the bad stuff has already been pretty much ruled out. For people who only twitch, maybe just being on this forum is enough.

Regardless of what tests have been done, EyeoftheWild's enlightening posts can't help but bolster the spirit and make one reflect on the deeper meaning of life. (Do you really wear satin panties?)

So why does this have to be an either-or situation? Can't we have it both ways? How about we go and get tested, then go home and kick back and read a EyeoftheWild original. )

Jodi