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What should I test for?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by leela, Aug 4, 2011.

  1. leela

    leela Slow But Hopeful

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    Hi,

    I have pretty much never gone down conventional medical route since becoming ill.
    I have an appointment scheduled with a random doctor at a low-income clinic, which I am tempted to cancel, since I fear the usual "hunh?" regarding ME.

    However, if they are offering tests for free or low cost, I was hoping people could suggest here things to test for that I might have not done yet with regular blood work.
    Since I have never looked at cytokines or tested for lymphoma or measured NK cells etc, are there tests for these or other things a clinic doctor might be able to run for me?
    What things should I be looking for, or looking to rule out as co-morbids?
    I think, if I keep the appointment, I will have to come with a list of requests rather than relying on the doctor I end up with to think of them.

    Any and all input would be appreciated :D
  2. WillowJ

    WillowJ Senior Member

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    I suggest a test for ANA (anti-nuclear antibodies), because this is often elevated in ME patients, and if positive, it will get you taken seriously (at least for a while) and an automatic referral to rheumatology. If you can get aid, Rheumatology will check you for Lupus and RA (or whichever other diseases your pattern of ANA resembles, but these are the ones the pattern is likely to resemble in ME), and, if you have dry eyes and mouth, Sjogren's Syndrome, and if you fail to develop one of these, likely treat you as if you had fibromyalgia (regardless of whether they eventually diagnose you with CFS, FM, or both). This is good, because they will give you medicines for sleep and pain, which you may find helpful.

    Full NK cell panel is expensive, and there is no standard specific test for the particular markers for ME. I would think they would be unlikely to order the specific ones for AIDS, even though these may be helpful in ME. It wouldn't hurt to ask, but then you would have to tell them you suspected ME (which is not necessarily advisable). If you do, be sure to bring literature on ME.

    Lymphoma would show up in a Complete Blood Count, I believe. You should not need a specific test for this, as CBC is part of a normal screening test. Do check to see that they order the CBC "with Diff", or count all the various types of white blood cells, because you can learn some very general information this way (allergies, parasites, etc.)

    Also ask for a Complete Metabolic Panel. This will show whether your potassium (K+) is low, whether your CO2 is off (may indicate difficulty breathing or a kidney abnormality), whether your liver is working well, etc. If they need a reason, any of suspected dehydration (i.e. dizzines, POTS, lack of sweating), difficulty breathing, or diarrhea should suffice (all of which are common for us, so you might have at least one of those). However, this is a routine test, so you shouldn't have a problem getting it, especially since you haven't been seen for a while.

    It would be good to have thyroid testing done (and this is usually part of a standard workup). Many doctors will only test TSH (thyroid stimulating hormone), but it is not possible to tell how your thyroid is doing from this one test. You also need T3 and T4 (not T3 "with reflex to T4", but both ordered separately), and preferably that new T7.

    It's good form to rule out MS, but this requires expensive testing and one or more visits to neurology.

    That's all I can think of tonight, but I will try to look later and see what other things might be mentioned, say in the CCC, which would be affordable.

    What things to rule out or look for as co-morbids has a lot to do with what signs and symptoms you have (and used to have). If you could tell about that or give a link to your introduction or blog where that's discussed (or send me a PM, if you don't want it public on the world wide web), it would be easier to answer more specifically. However, I've covered some of the expected comorbidities and exclusions.
  3. WillowJ

    WillowJ Senior Member

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    I forgot to answer about cytokines. I would not expect any random PCP to be able to order or interpret these tests. You would have to bring literature and get them to talk to Dr. Fletcher, Dr. Klimas, Dr. Light, or Dr. Mikovits... Within the realm of possibility, but not something you can just walk into a clinic and expect to happen.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    ebv, cmv, hhv6, mycoplasma, chlamydia pneumonia and a lymphocyte sub set could be a good start and not hard to get from most labs.

    cheers!!!
  5. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
  6. leela

    leela Slow But Hopeful

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    This is great, everyone, thanks!
    Due to really bad brain goo lately, I forgot to mention I had cbc diff and metabolic in may with a naturopath who offers dicscount testing.(She's in another state, so my access to her is limited. The trip is almost not worth it, crash-wise.)
    The blood work does show inflammation, for instance, but I've never checked specifically for cytokines.
    Since I am unfamiliar with AMA world, what you say makes sense that they would refer me to a rheumatologist if the numbers were off enough. I did not know a CBC would show warning signs for cancer. That is a relief.
    What I've learned from you already is that the base test has to be weird enough for them to send you to a specialist. i dunno where that would lead in free clinic land.

    I appreciate so much all the time and effort you guys put into giving me this great info. I have a week to decide if I want to go in or not.
    It is hard enough just getting out, going to a building like that with the MCS and all, without having to deal with potential disdain or what have you. If I go, I want to be totally prepared abut what I would like them to do.

    Thank you for all the great info! :hug:
  7. WillowJ

    WillowJ Senior Member

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    CBC won't show all kinds of cancer, but it would show blood cancer (leukemia; I misspoke when I said lymphoma), which is one of the types most likely in ME, I think.
  8. santi

    santi

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    The first 3 could be gotten from serology, but mycoplasma, chlamydia pneumonia and lymphocyte subset, how are done exactly?
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    myco and chlamydia can be serology and pcr, lymphocyte testing is not an infection as such but an indication on what your immune system is doing ie fighting an infection or possibly tiring out from fighting infections. total lymphocytes are normally done on a full blood count but sub sets are a different specialty test commonly used in HIV and cancers and immune disorders. high cd8 common in herpes infections like ebv, cmv etc and can help indicate that these infections are active when serology is positive for igg antibodies which shows past infections but cant tell if there reactivating which the cd8 lymphocytes can help with. some labs can give u an igg level which if high can indicate viral reactivation but this test isnt available in alot of countries like australia where im from.

    cheers!!!
  10. WillowJ

    WillowJ Senior Member

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    here's a full version of CCC just in case http://www.co-cure.org/ccpccd.pdf

    more tests which can be ordered from an ordinary clinic are Jammes' (except the ELISA for heat shock proteins; I'm told that's expensive and not practical to use outside of research):

    Jammes Y, Steinberg JG, et al. "Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses," J Intern Med. 2009 Aug;266(2):196-206. PMID: 19457057
    full from the journal (pdf)

    Jammes Y, Steinberg JG, Mambrini O, Brgeon F, Delliaux S. "Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise." J Intern Med. 2005 Mar;257(3):299-310. PMID: 15715687
    full text at MESA (pdf)

    I didn't know you could get infections tested at a random GP/PCP. That's good to know!

    I also find lymphoma should show on CBC also. (sorry to change my mind so many times, lol... you can always do an internet search to check up on me)
  11. santi

    santi

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    EBV, CMV and similar have corresponding IgM to indicade reactivation, IgG is not for that.

    Cytomegalovirus Antibody, IgG and IgM; Cytomegalovirus by PCR
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thats what alot of docs mistakenly think but igm is a first time infection but can happen with reactivation(but not always), igg they say is a past infection but they cant tell that it has reactivated or not unless they test for high titres or there is elevated lymphocytes. That is why alot of doctors dismiss herpes infection like ebv,cmv as many only test positive for igg antibodies which they believe is only past infection which is not the case. Many cfs experts believe alot of these tests arent accurate, which i believe, as i have had igg antibodies to ebv which you are suppose to have forever but now test negative to ebv which is strange. If someone is over 30 and tests neg to ebv u have to question the testing as they say 95% of the population have been exposed to ebv unless you have lived a life on your lonesome.

    cheers!!!
  13. santi

    santi

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    The question is, what are high titers for herpes viruses IgG? When you consider are high or low? You must take several samples and see along time, there are no chart ratios for those.

    About it, do you consider with CD8 is enough to detect present EBV or CMV infection?
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think whats considered high viral titres is up to the interpretation of the doc. CD8 with igg antibodies to ebv and or cmv was how my doc diagnosed me, cant get titre levels done here in australia.

    And like u mentioned with the titres on how samples are done over a period of time to see a pattern, this is what my doc did with the lymphocyte subset tests. Over a 12-18 month period from memory most of my subsets were elevated and a trial of antivirals famvir brought them down to close to normal with cd8 being the only one still above range but still came lower. After 12 months on av's i took a break and all my lymphocytes became high again and reversed again when back on famvir. cd8 from my research and what my doc says is a common finding in herpes infections, other subsets probably go up to like i found but cd8 being the main one.

    So with me there was educated guesses based on my lymphocyte sub set tests and then theraputic trail of antivirals, confirmed this being a cmv reactivation. I will say cmv as famvir worked but valtrex had no effect and although famvir is said to only have activity against shingles and herpes 1 and 2, it does anecdotally work on cmv and hhv6. When i started famvir i had no igg antibodies to ebv just cmv and these dc8 also came down.

    .i consider a high cd8 lymphocyte level with a positive to cmv igg antibodies and mnoitored over 12 months and then treated with famvir and if they come down, thats a good sign of a cmv or ebv infection.

    Not having a go at you, Santi, just showing how complicated testing is. but u know if a very high percentage of the population have already ebv and cmv and cfs/me have poor nk function then i couldnt begrudge someone trialling av's for several months and seeing how they go . antivirals like famvir and valtrex are alot safer on the liver and kidneys when compared to valcyte. And i lean heavily towards famvir has it seems to have a broader range of activity against many more herpes virus then valtrex.

    cheers

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