A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Question on blood tests

Discussion in 'General ME/CFS Discussion' started by Strawberry, Aug 24, 2015.

  1. Strawberry

    Strawberry Senior Member

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    Seattle, WA USA
    I will see Dr Kaufman in December. YAY!

    I have been in a crash all summer long thanks to moving my home, and my office back to back. I finally got the sore throat to go away after about 3 months of pretty severe sore throat, but am still having a tough time with fatigue. I can rest on weekends and know I can get feeling better, but I wonder if I feel GOOD when I see Dr Kaufman, will blood tests not be as obvious?

    Should I actually keep on the edge of chronic sore throat and fatigue until December? Or will what ever is causing this be obvious either way?

    Thanks in advance!
     
    L'engle likes this.
  2. minkeygirl

    minkeygirl But I Look So Good.

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    If the sore throat is from a virus I don't think it will matter. Someone told me that it takes years to reduce a virus. So feeling better isn't going to reduce the numbers so much that s doc would say "oh this is fine"

    If not a virus, I still don't think it will make a huge difference.

    I'm just guessing based in my labs and treatments.
     
    L'engle likes this.
  3. Strawberry

    Strawberry Senior Member

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    Wow, that is amazing to hear! I knew cold viruses took a long time to clear (that is why they mutate so much) but I had no idea how long it took.

    So hopefully the evil lurking nasties will rear their ugly heads no matter what. And Dr Kaufman can send them into the corner for a LONG time out.
     
  4. Eeyore

    Eeyore Senior Member

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    @Strawberry - What tests is he running? Some tests would be pretty variable, whereas others would not. For example, someone with HIV will test positive for HIV every day, not just on days they feel bad. Alternatively, someone with acute pancreatitis will have elevated lipase and amylase during the attack, but a few days later, will probably have entirely normal labs. It just depends what tests are being run and what is wrong with you.
     
  5. Strawberry

    Strawberry Senior Member

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    I'm not certain, but from reading other people's experiences it appears he tests for all known problematic viruses (herpes, entero, etc.) c. pneumoneae, lyme, etc. What else I am not sure of.

    As for what is wrong with me, if you ask my local doc I am a whiny lazy anxiac hypochondriac female that just needs to suck up and shut up.
     
  6. Eeyore

    Eeyore Senior Member

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    @Strawberry - you're not alone there. Part of the ME curse is having to ask for help from docs who think all ME patients are just nuts, lazy, somaticizing, or whatever. It really sucks! We don't all agree on these boards as to what is causing the illness - and it may not be the same for all of us - but we do agree that it's real!

    I have some good docs now, but I have also come across many really horrible ones. Mistreatment by docs makes this syndrome so much harder to bear - and in my case, at least, has made me mostly choose isolation. Fortunately I have a very close, supportive, and loving family that has helped me all these years. I'm sure it's even worse for those who are alone.

    As for the tests, IgG for viruses should pretty much always be positive if you are infected (and for herpesviruses, it's always for life). It shouldn't matter when you do the tests if you are looking for those types of things, so long as you've had them long enough to develop antibodies (which varies but is on the order of weeks to months, depending on the pathogen and the person). IgM only shows up in the early phases of diseases, and is less useful unless trying to prove an acute infection / new infection. So timing shouldn't be a problem for you.
     
  7. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello. Well that depends what you mean regarding blood tests and fatigue, and them even more complex, what you mean by CFS. How is a patient meant to know? Exactly. CFS is meant to be about more than fatigue (e.g.a neurological disease), but then as you suggest, CFS can also mean chronic fatigue with a few symptoms that don't put people in ER (different subsets of illness).

    This becomes a big problem when trying to answer your question, in relevance to your own version of 'CFS', but I'll try, because we don't really know who has what condition, and most of us have to base our experience of illness on symptoms, severity of symptoms, and level of disability. Naturally we shouldn't have to be disabled, to know we are ill, yet in CFS, without a test, it sadly is that way. (The actual level of disability required in CFS, is high, around 50% reduction of what you used to be able to do when sick). Unlike Diabetes or other chronic disorders that can wreck people's lives.

    Standard blood tests a doctor runs associated to 'fatigue', tend to be normal in CFS (CBC/FBC, LFT, ESR/CRP, U&E, Glucose, Thyroid), unless you're severely affected. Even then, they fluctuate!

    On top of that we don't know if you've been sick 1 year or 30 years. Because we don't know what this means yet in CFS research, and we don't know how to identify a subset, time spent sick can make some difference or no difference in terms of your overall immunity.

    For example: my blood work is worse, the longer I've been sick, as in decades sick. Even if you spent $10,000 on specialist blood tests allied to CFS research, they might all come back normal at this time in your life. Mine don't, but I never tested mine when first ill, as they didn't exist then, the internet didn't exist back then. :)

    This is the huge problem with a CFS diagnosis, you have to be mega ill usually to get abnormalities on conventional blood tests that are consistently bad and that's absurd as we want to be as healthy as possible and shouldn't need to be housebound or bedridden to prove we are sick!

    IgG is indeed elevated if you're actively sick with a bug, with the exception of immune suppression states. Then you can have a null antibody response despite being actively infected and feeling awful. (This phenomena is a huge debate in Chronic Lyme disease. The Govt deny chronic Lyme exists as antibody levels fall to normal, or low normal, but the person may be progressively ill! This is explained by science and the infection can hide in tissues so the antibody blood tests for Lyme would all come back normal, despite the person even developing Arthritis/POTS/Seizures etc, which they didn't when their initial antibody levels for Borrelia were elevated).

    This 'stealth' nature of Borrelia may apply for some infections in ME too, such as EBV, but we don't know, and we won't know until they ditch the Fukuda criteria and study people with symptoms of infection! Currently in CFS research, if you are actively infected, you get kicked out of the research, because they base having CFS on 'fatigue with no known cause'. Thus no cause can ever be found as we are researching anyone with unexplained fatigue and a few other symptoms. This has been going on since 1988 and is the same today. CDC still wants this criteria in use for political reasons.

    So to repeat, in my view, unless you have active viral or allergy symptoms (raised lymph glands, sore throat, raised temperature, red/watery eyes, upset stomach, tachycardia, shortness of breath, chest pain, feeling chills with normal thyroid), then I doubt, (unless you are sick for a long time or you are severely affected) a standardised batch of blood tests will show a thing, and specialist blood tests might not show anything either. This doesn't mean don't test privately, and it doesn't mean al the tests will be normal when you see your doctor. It just makes it more likely.

    This is the curse of having a possible autoimmune disease like CFS, one with low grade inflammation (ESR/CRP usually normal), which has no recognised test or way to judge just how sick the patient is (unlike HIV that has a viral load test, or some cancers).

    Conversely no one with MS, or Lupus has to prove they are infected with a bug, to get accepted, diagnosed and treated as seriously ill, but we still do, which if you think about it, is pretty prehistoric and sad for the patient who remains unable to get treatment or disbelieved by sceptical physicians.

    As a work around, consider doing what I do. Take your temperature, take a photo of your lymph glands if they're raised and collect all the data. This tends to help with people who don't believe you as no on can 'fake' having a big lump in their neck lymph glands (were toxins are pulled into and processed when you're infected) and also if you are taking photos of a digital thermometer, it's unlikely it would be wildly inaccurate if it's a good make.

    Lastly, if you can, keep a diary. If you're getting dizzy, chills, sore throat, sneezing, feel light headed then write this all down and maybe get a highlighter pen on the days your 'conventionally' sick and highlight this. Photocopy/scan it all at home, then show your specialist when you see him, which will give the doctor some idea, how frequent your infections are.

    In CFS you can get long term infection, but what is more likely, is generalised poor immunity. In other-words you're walking around with repeat common cold infections, and bacteria/viruses that cause the symptoms you're experiencing, which 'healthy' people tends not to get so many times per year.

    My house is all infected with ME patients. To put that in context, the average person has around 5 viruses per year. In the last few years (decades after getting sick), I am now lucky not to have an active infection every 10-14 days which equates to at least 25 infections per year. That works out at 5x increase in viruses due to my condition.

    When I first got sick and I was still active and could get out the house, I could never show a doctor I was regularly sneezing, coughing, raised lymph glands, vertigo, itching. Now it's just become part of my life and why I am housebound and too sick to get a doctor.

    Definitely try and maximise your health now by listening to your body and back off if you exert too much (mentally as well as physically) that causes flair ups, and if possible do not do anything that will make you become severely affected like lots of exercise, exposure to stress, chemicals or taking unnecessary medications. Like so many people I found that all out too late, as no treatment exists!

    Believe in yourself and your own common sense in knowing what makes you better and worse. Good luck and take care.
     

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