Julie Rehmeyer's 'Through the Shadowlands'
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petscan on brain inflammation ?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Zara, Dec 15, 2017.

  1. Zara

    Zara

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    Who has done petscan on brain inflammation?

    And what were the results?

    Thank you.
     
  2. andyguitar

    andyguitar Senior Member

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    Pet scan will only show up things that are specifically looked for. So a pet scan that looks ok for some things is not conclusive evidence that every thing is ok.
     
    Last edited: Dec 15, 2017
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  3. jpcv

    jpcv Senior Member

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    But there is data showing alterations using FDG,.
    As dar as I know, there is no data comparing SPECT with PET in patients with ME.
    I am right now in the hospital, I Will do in a few minutes a brain SPECT.
    I will post the results later.
     
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  4. Zara

    Zara

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    Good luck...hope to hear from you and your result..


    What are they looking for in your case with spect? Do you get a tracer infused in your blood and what does it look for?
     
    Last edited: Dec 15, 2017
  5. Zara

    Zara

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    I know that if nothing shows up it does not mean there is nothing wrong with the brain..it depends what you look for..but petscan with PK11195-PET or the most recent pk...can maybe give answer whether inflammation is present...
     
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  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    This is very good advice indeed.

    I'd love to have this test done myself, but there are so many hurdles we need to cross as patients before we can even begin to be confident in engaging with people who may offer us the opportunity in exchange for hard currency,or even 'free' for research. If it's free you won't necessarily get the results by the way, so be careful of being going through a stressful procedure only to find a year later a researcher replies to you and says, sorry I can't give you the data after all, even after publication it wouldn't be ethical - bye. That might irrate the most calm of us.

    So back to your point, you're very correct:

    1) A low dose radioactive tracer is often used in imaging research studies that find certain forms of inflammation in certain regions of the brain, without the tracer it won't 'glow' on the scan so it has to be used. Unfortunately as someone with the malgined disease label we have, then most Hospitals and doctors are going to take a lot of convicing this is ethical to inject you with in the first place, not only on medical grounds (possibly adverse reaction) but also ethical. So they'll need a neurology referal stating the 'clinical need' for the scan.

    2) When the procedure is over and the scan is complete, we need to remember special computer software is required (at a research level to find often 'missed' inflammation), and the results need to be interpreted by people knowledgeable of this specific kind of software or our results are either unquantifiable or simply misdiagnosed as normal. ''we didn't see anything, sorry''. So we need to make sure the people who review your results are familiar with what the results mean.E.g.can they accurately interprete the data? If not, the whole exercise is a waste of money and also potentially harmful to health as we have impaired de-tox in our bodies and something as seemingly inocuous such as Gandolinium (IV constrast agent used in brain MRI's) may come back to bite us years later in ways we weren't aware of due to having an unexplained neurological illness, especially one with poor metal detox.

    3) The type of scan (including power of the machine) and specific form/brand of tracers should follow 'CFS' research studies findings precisely, and not just be 'a PET scan, apply here' sort of set up. NB: There are plenty of private imaging companies who (in countries with less regulatory control) will easily take your money, give you a PET scan and say goodbye. This doesn't make them bad people, it's just they don't realise how incredibly complicated a hit n miss diagnosis of 'CFS' is, and that finding things wrong to replicate research using imaging techniques (so far) is incredibly hard to do, otherwise we'd all be having specialist brain scans and sharing our results aghast at the abnormal results we all have, rather than maybe 1 in 3 of 1.2% of us on this forum who've had a PET scan of the same form 'CFS' researchers perform in positive studies of neuroinflammation. Which leads me onto the elephant in the room....

    4) All 'CFS' research is plagued by the heterogeneity issue. E.g 100 'CFS' patients in Baltimore won't be presenting with the same illness as 100 'CFS' patients in Madrid. So just because one research group finds neuroinflammation in 25% of a group of 'CFS' patients in one study (hopes rise these are 'real' ME patients), doesn't mean you will have their form of illness to replicate the findings in yourself.

    So what I get from all this, is that we should go into any private research of our own, with an open mind and expect it to be normal, and anything else is a bonus! E.g. don't drop $3-5,000 on an extravagant imaging study that you'll be convinced shows you have the same findings as study X, and turns out it doesn't.

    Trying to remain positive it would be incredible if patients on this forum could share any positive neuroinflammation brain studies, and perhaps we could make a database of our own?

    Here is some info we could collect, to potentially help ourselves, and others:

    Type of scan used including make and model number (power of imaging capability/resolution etc)
    Tracer used
    Brain region observed and by whom? Neurologist, researcher etc.
    Software used to look at data

    Time of scan: was it done first thing in the morning (after sleep/no sleep) or when purposefully more fatigued (5pm).
    Activity before scan: Did you feel extra ill on the day of the test, flu like, have a temperature or just 'average'.
    Level: Are you mild, moderate, severe. Housebound or bedridden?
    Length: How long have you been sick. A few years or decades?
    Presentation: Are you plagued by chronic headaches, vertigo, photophobia, neuropathic pain.
    Inflamation: Do you have evidence of cytokine or other markers for inflammation? Low/High?
    Onset: Slow or Sudden onset? Or slow onset and then sudden?
    Hospitalisation: Have you been hospitalised for 'CFS' and how long and what for?
    Sex: Male or female - do we find it's the men or women who get more positive results, and if so, why?
    Overlapping/Inflammatory disorders/diseases etc: POTS, MCAS/Asthma, PCOS (females), Lyme, Lupus etc, MS
    Past history of head trauma, seizures? If so before of post symptom onset and diagnosis etc.
    Medications you're taking: We may find an odd correlation with a common drug we all take, reducing or worsening inflammation.


    If we did this seriously, we might get some data of our own, e.g the more severe tend to find Scan A finds abnormalities in region B, and the less severe finds a different scan but in the same region helps etc etc.

    What I found sadly in this illness, we always have to be our own researchers, never mind our own doctors.
    Realistically this can only be at an amateur level, but it doesn't stop us presenting any data with gather in interesting ways and then giving this to people who can then advance on from this, actual neurology researchers interested in neuroinflammation in this case.
     
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  7. Zara

    Zara

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    @Research 1st

    Thanks for elaborating on the cons and pros.
    It would be helpfull if people who have done petscan on braininfl. Would report on this and we can gather this data you mentioned.
     
  8. jpcv

    jpcv Senior Member

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    Perfusion deficits , as shown by Dr.Hyde.
    You have to stay 20 minutes in a dark roem so that your brain receives no visual stimuli.
    Then you receive the tracer, no big deal.
    After receiving the tracer you go the machine for 35 minutes, that's it.
    My test results are practicaly normal, just some minor perfusion alterations.
     
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  9. Zara

    Zara

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    Thanks for leting me know...so perfusion of the brain is a known problem with me/cfs.

    What is the tracer called? You know the specific name?
     
  10. jpcv

    jpcv Senior Member

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  11. andyguitar

    andyguitar Senior Member

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    To cut a long story short.... I am confident that if most sufferers had a PET scan for the Serotonin transporter SERT it would show low levels of it. If that was the case we would then be looking at a possibility that Serotonin is not being cleared away as it should be. The excess level would degrade and lead to chronic hydrogen peroxide poisioning and inflammation of the mitochondria in the thalamus. Which would be a main cause of most symptoms. Sorry that i cant say what scientific paper i got all this from, but it would cause problems for all if made that info public. Lets just say that there are many things that can disable SERT.
     

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