Invest in ME Conference 12: First Class in Every Way
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Lymphadenectomy Negative for Viral/Bacteria - Where to Go From Here

Discussion in 'General ME/CFS Discussion' started by bertie7, Apr 19, 2017.

  1. bertie7

    bertie7

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    One of my worst symtoms of having lived with CFS for 30 years this past February is painful, very swollen lymph nodes all over my body which was confirmed by WBC Nuclear scan describing them as having "unexpected high activity" all over the body (some areas worse than others)


    I finally had two lymph node removals which confirmed no viral or bacterial infection. I am speaking with my doctor from Open Medicine Clinic tomorrow and although I know he will be helpful and informative I was just wondering if anyone experienced anything like this and any advice for items to discuss with him to ensure we explore all avenues on proceeding.

    Hope this makes sense and thank you very much for any advice.

    Many Thanks!
     
    Hutan likes this.
  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Firstly, I would get a print out of what infections you were tested for and study them.
    Then I'd check: Did your doctor test for 3, 7, or 45 infections? What method and technology did they use to detect the pathogens? How accurate are the assays, e.g. what is the specificity/sensitivity for the assays they used. It may be 98.8% accurate, it may be 67%. NB: The figure will change for each pathogen remember.

    Lets say it was a virus. How sick were you on the day? Did you feel awful and were sneezing and had a low grade fever or did you do unusually well and crash afterwards and also flair up immune wise? For all we know if it was a very low level chronic re-activated virus, it backed off on the day of the tests (viral load) and re-activated, by you getting stressed and pushing yourself hugely to have the tests done. None of that is proven, it's all guess work, but it's worth considering if you have what looks and feels like a virus, that cannot be 'found'. With ME CFS, we tend to do nothing as we feel ghastly at rest, and if we do a little, our immune systems go crazy. So consider, was it going crazy just before the test or did you rest for a while before to be as strong as possible and in as less pain as possible (inflammation lower) for the hospital/clinical procedures you went through? I'm biased as I'm thinking of myself, but maybe you get affected in the same manner as me. I only really can prove I am 'flu like' if I am more active or stressed, but I avoid this as then my disease totally goes out of control. For testing, e.g. inflammatory markers this is the best time to do testing (e.g. blood draws) but ironically, then we're too sick to leave the house!

    In my view, we need to be clear when doctors tell us, as patients ''no infection'' and patients thus agree and give up the search - was this wise? Probably, but also possibly not long term if the symptoms persist, and signs emerge (such as you describe) that don't fit into the picture of plain old CDC criteria CFS. In my view, if you have the funds left, going to such a prestigious centre as the OMF (or OMFG when you see the bill) you need to make sure that they've absolutely done everything possible to come to this conclusion, as at the end of the day you had an invasive test and don't want to to be having that done again in a hurry! Maybe they still have some samples saved (sometimes they freeze samples if there are 'extras' saved). They store muscle biopsies for example, if the surgeon takes extra bits out of you, ouch!

    If the infections that seem possible to cause your symptoms were negative, then are there any other assays used to detect them where the tests they used might miss them perhaps? Personally, all my tests are negative (almost) unless I go down the Lymphocyte Transformation Test route (LTT) and the Lyme and Co infections then come up which serology/antibody tests miss entirely. Yes an LTT doesn't use antibodies, yes it's not antigens either, but it's an immune memory that proves at the very least, you had Borrelia - which isn't normal if you still have all the clinical signs of it - such as raised lymph glands! If you have money left I would check with FEDEX/DHL if you can send some blood off to Germany at Arminlabs (that is now accredited, so not a Lego lab) and get their LTT Elispot tests done to rule out (not totally as no Lyme tests are reliable) Lyme and it's co infections. Infact scrap that, I'd wait until May, and see if you can get a Tickplex test done too at the same time (also available from Arminlabs) which is many tests all off one sample (new to market). Yes these tests aren't 'approved' but they all help build a picture, if time and time again, they keep coming back positive and the infections they pick up, just happen to correlate with your signs and symptoms. If you had money, I'd also get a Lyme Nanotrap Urine test, that IS an antigen based assay. Basically if you're peeing out Borrelia DNA, then you have Lyme. As that's a University grade test, no one can argue it's junk, because your reply is why is Borrelia in my pee then? This shows you have a bacterial infection, which might then explain raised lymph glands. Which on that topic.....

    If cancer is ruled out and infections, swollen lymph glands, even including a raised core temperature can be caused not by infections or cancer, but by autoimmine diseases and even chronic allergies. So I'd get your IgE tested for allergies and ANA/ENA/ etc to rule out any known autoimmune conditions alongside markers such Anticardiolipin antibodies and Lupus anticoagulant - preferably during or shortly after a pain flair up. (Not unheard of to be told you have severe chronic CFS and you actually have Lupus or something similar).

    IgE and allergies seems pointless to many, but every time I have a mast cell attack, I get a raised core temperature (I take it with an ear thermometer) I also have chronic raised lymph glands in my neck like you that are 'unexplained'.

    REDLABS USA has tonnes of interesting tests for ME/Lyme, I'd chose obscure ones that may well fit into a Chronic Lyme type presentation but are hard to find in most labs. Tests like:

    Nagalase
    D-Lactate
    PGE2
    VEGF
    TGF-b1
    MIP-1
    MCP1
    Ammonia
    Kynurenic acid
    Quinolinic acid
    MMP-9

    If you can, or someone else can on your behalf I thoroughly recommend scanning through this REDLABS PDF document on Lyme testing, it's honestly presented (not trying to promote any type of assay) detailed but not impossible to understand.

    Lastly, i'd also consider the following: if the reservoir of a possible infection you may have isn't in your lymph glands or the infection being attacked there either, it could be in your CNS/Brain. In that respect you could have every infection test done under the sun, and they'd find nothing as it's tissue born (not Lymph) and thus cannot be detected.

    Also consider if the infection is new to science, it won't show up on any blood test or biopsy, as the test doesn't exist yet! An assay like PCR only 'works' for what it's been calibrated to detect. So it's fantastic at detecting it (ultra sensitive) but can only 'see' what the test has been programmed to see.

    I hope it goes well and take care.
     
    Vatrushka likes this.

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