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Help/direction/guidance for my wife (HLH?????)

Discussion in 'Feedback/Suggestions' started by Branden Gatewood, Feb 5, 2023.

  1. Branden Gatewood

    Branden Gatewood New Member

    I’m asking for help/direction/guidance as I’ve gained a wealth of knowledge from this forum and find a lot of value in everyone here. Dr. Jack if you have the time I would be forever grateful to hear your insight.

    I was listening to Dr. Perry Nickelston’s stop chasing pain podcast 177 where he interviewed Dr. Jack. I’m going to listen to the podcast several more times. There was a part that really stuck out to me. Dr. Jack mentioned HLH. I had never heard of this previously. I searched through Jacks Twitter and got some info from there on HLH.

    My wife is a NICU nurse. She received 2 doses of the Moderna vaccine in March of 2021. She never received a booster as we were able to fill out religious exemption paperwork. She did not receive a flu shot this year. October of 2021 she dealt with some vertigo issues. She went to the chiropractor and had the epley maneuver, blood work and was given Desbio Epstein Barr virus homochord (she had mono in 2012) and Desbio dizzy. She was back to her normal self after a couple visits to the chiropractor.

    Flash forward to January of 2023 and some of the vertigo issues have returned. She received a flu shot in October of 2022. She again went to the chiropractor and they performed the epley maneuver and recommended she take the Desbio supplements. It’s been 2 weeks now and her symptoms are improving but she still gets light headed occasionally.

    She has finally decided the hospital setting isn’t for her. She has the biggest heart in the world and the system has finally taken a toll on her.
  2. JanSz

    JanSz Gold

    epley maneuver
    She must learn how to do it all by herself,
    do it on as need bases.

  3. Jack Kruse

    Jack Kruse Administrator


    Raise the redox is the only answer for this. Moving toward the sun puts you further from HLH and staying in the hospital under man-made light waves puts you closer to death from HLH

    John Schumacher and JanSz like this.
  4. Branden Gatewood

    Branden Gatewood New Member

    Thank you for your response. She got blood work done. Would you mind if I posted those results?
  5. As Dr. @Jack Kruse mentioned above -> Haemophagocytic lymphohistiocytosis (HLH) can cause multiorgan failure, and has been reported as an acute clinical presentation of COVID vaccine. HLH used to be a rare life-threatening condition caused by an overactive, abnormal response of the immune system. This is now not so rare now that there has been such wide spread compliance to the vaccination protocol.

    However, self-diagnosis is not a good practice. If you suspect HLH, please consider having it "professional" diagnosed.

    A typical diagnostic criteria for HLH needs to include gene mutation analysis or if at least 5 of 8 diagnostic criteria based on HLH-2004 protocol (1) are met:
    • Fever (peak temperature of > 38.5° C for > 7 days)
    • Splenomegaly (spleen palpable > 3 cm below costal margin)
    • Cytopenia involving > 2 cell lines (hemoglobin < 9 g/dL [90 g/L], absolute neutrophil count < 100/mcL [0.10 × 109/L], platelets < 100,000/mcL [100 × 109/L])
    • Hypertriglyceridemia (fasting triglycerides > 177 mg/dL [2.0 mmol/L] or > 3 standard deviations [SD] more than normal value for age) or hypofibrinogenemia (fibrinogen < 150 mg/dL [1.5 g/L] or > 3 SD less than normal value for age)
    • Hemophagocytosis (in biopsy samples of bone marrow, spleen, or lymph nodes)
    • Low or absent natural killer cell activity
    • Serum ferritin > 500 ng/mL (> 1123.5 pmol/Lng/mL)
    • Elevated soluble interleukin-2 (CD25) levels (>2400 U/mL or very high for age)

    With that said, Dr. @Jack Kruse is correct. The intensity of light would be her only hope. Is it possible you could move your job and hers to El Salvador?
    Last edited: Feb 6, 2023
  6. JanSz

    JanSz Gold



  7. JanSz

    JanSz Gold

    It is rather easy and quick to get fasting triglycerides. and (Serum ferritin)

    If not just to see if it is direction worth pursuing.

    since the treatment would eventually include dexamethasone,
    I assume that it may be worthwhile to get cortisol tested.
    Preferably saliva.
    But blood may be easier to get.

    OTOH, since your wife is a NICU nurse, she may have bad cortisol (and Circadian Rhythm) already, due to her work.

    Last edited: Feb 6, 2023
  8. Branden Gatewood

    Branden Gatewood New Member

    Thank you everyone for your responses. I definitely didn’t want to self diagnose her. I just heard Jack mention HLH on the podcast and knew she had similar symptoms. I figured I would ask here since her primary care dr. gave us 0 helpful information. She went and saw a specialist today. He diagnosed her with vestibular neuritis.

    JanSz likes this.

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