Has anyone had their Substance P levels checked and/or had brain mapping do

Discussion in 'General Health & Wellness' started by alifaith, Feb 21, 2009.

  1. alifaith

    alifaith New Member

    I have been suffering with this horrible condition forever and I've done a ton of research on the subject. All the cutting edge research points to two main ideas in reaching a cure, in my opinion:

    1) Substance P, a cerebrospinal fluid, is much higher in FM patients, and it sends an excess of pain signals to the brain, magnifying our pain to extreme levels. Has anyone had this tested by a doctor, or in a clinical trial? If so, did insurance pay? It seems like researchers keep verifying it in tests as the villain, but there is nothing being done to find a way to fix the levels (a cure). Also, does anyone know if there is another way to check the levels besides a lumbar puncture (aka spinal tap - PAINFUL!) for serum to test?

    2) Research has shown that use of QEEG's and fMRI's allow detailed brain mapping to be done. It shows how the brain reacts to various stimuli related to pain and proves that FM patients react at much higher levels than healthy subjects. Has anyone had this done? My doctors have laughed at me in requesting these tests, saying insurance won't pay for them because there is no cure for the information that would be provided. This seems prejudicial to me, as one of the main problems in FM has been finding an objective, quantitative test. So we have it and it would provide us with a diagnosis that insurance companies would have to acknowledge...Why is this not happening? One of the top neurologists in the tri-state area told me that I have no shot at getting this testing paid for, which leads me to the conclusion that I can only access it by finding a clinical trial that involves it. Now once we have the proof, what to do with it? Again, why is all this testing being repeated, yet no one seems to be working on a method to adjust those malfunctions in the brain?

    When it comes down to it, the most progressive trials toward a cure are being conducted everywhere but in the USA. Yet trials for drugs to treat symptoms are abundant here. Drugs keep us running on the hamster wheel, addicting us to chemicals, and fattening the pockets of pharmaceutical companies and doctors who treat symptoms. Funny how our medical system is a for-profit industry, and these other countries have socialized medicine. Anyway, please sound off with any experiences you may have had in these steps toward a cure, or just what you've learned about this progress and your opinions.

    Thanks and hope you're having a pain-free day.
  2. SnooZQ

    SnooZQ New Member

    Like you, I am very leery of proposed modes of healing that line the pockets of Big Pharma. You do hear of people responding to some of these newer meds, but often there is a med "poop-out" down the road, with folks left as bad as or worse off than before the treatment.

    I haven't heard of SP testing being routinely done for FM patients. In research, yes, but not otherwise. So, I guess one route to getting SP testing done might be through participation in a research program.

    Tests that are less common tend to be quite expensive, and as your doc said about the brain imaging, not usually covered by insurance.

    **** Have you researched the relationship between thyroid function and Substance P.***

    Active thyroid hormone (free T3) is a natural suppressor of SP. Where free T3 is low, SP runs high. Where free T3 is midrange, SP is lowered.

    Free T3 is frequently found to be low in FM patients -- when it is tested for. The trick is getting the test. Most MDs are schooled to test only TSH (thyroid stim hormone, a product of the pituitary gland). However the fallacy here is that pit function is often sleepy in FM & CFS, so a "normal" TSH is not always the whole story when it comes to thyroid function.

    If that were not enough, some of the meds commonly rxd for FM, esp the ADs & SSRIs, have a subtle but long-term thyroid suppressant side effect.

    There are in most communities docs who will order free T3 levels. Not usually rheumies, nor even many endocrinologists, but some DOs and many Naturopaths will order the testing. May still not be covered by insurance, but def. cheaper than brain imaging. There are also labs where patients can "self-order" lab tests. No insurance coverage there, and if things are out of whack, you still need to find a doc to RX hormone replacement. So it's most cost effective to network around to find a doc who will work with you on this. If you are interested.

    There are quite a number of FM sufferers who have noticed a definite improvement in the severity of there symptoms when their thyroid function is optimized. But there are also FM sufferers with perfect free T3 levels. The FM diagnosis contains a heterogeneity of causation amid fairly homogeneous symptoms.

    Best wishes.