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iwd

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Everything posted by iwd

  1. Constant pressure on the chest would be a concern to me. I notice you listed congenital heart disease. Perhaps you should see someone to get it checked out just to be sure. I get chest pain once in a while but I have it checked out right away if it is something new.
  2. Hi, My sister was clinically diagnosed with Lyme disease this spring and some of her major symptoms resembled both Lyme and autonomic issues. She improved on her first course of antibiotics but since she began her last one and had 6 doses of Zithromax, her condition worsened and many of her original symptoms came out, but now even worse. I think it is possible this could be a herxheimer reaction (neurotoxin is created from bacterial die off) but it might be something else autonomic in nature. I will describe her symptoms which I think might be NMH: feeling like the blood is rushing away from her brain on standing for a while or sitting up feeling the need to sit or lie down tachycardia and feeling short of breath after being up for short time legs turning blue like blood is pooling brain fog with slurred speech numbness on the face and spine urgency to pee all the time fever for 3 months now some joint pain She is now hospitalized and the Neuro did not rule out Lyme as a cause but said it could be other things. She was lying in trendelenburg position tonight with IVs running and is on cardiac telemetry. She had a first degree block (which lyme can cause) in April and has had some tachy issues since then. She has stopped all antibiotics for now. She was taking 3 teaspoons of salt in water a day to help keep her BP up but she said that it stopped helping. Lyme is well known to cause NMH but I don't know about treatment of this crisis specifically. Electrolytes WNL and so was CBC. I told her they should check adrenals and neurotransmitters. MRI was normal except for pineal gland cyst. Neuro said the cyst was not the cause. She is scheduled for a tilt table test. Any advice? I understand volume expanding is important right now, but what else could she be taking to help with flow to the brain? Thanks, I am very worried as she is very, very weak and I am very concerned about this crisis.
  3. Dear Amy, I was reading some of your past posts an am concerned your docs have missed something. With your history of facial numbness, joint pain, fatigue, rashes, etc, etc. I think you may have Lyme disease. Yes, they do have Lyme in Iowa contrary to what non-Lyme knowledgeable doctors think. Most doctors in Iowa are not aware of Lyme and co-infections, so most Lyme patients in Iowa see Lyme specialists out of state. Joint pain is NOT caused by POTS and Lyme DOES cause joint inflammation and POTS. Serious infection from Lyme that has not been treated can cause damage to the nervous system and heart. Chronic headache, stiff neck, muscle and joint pains, fatigue, numbess or twiching on one side of body, vision issues (floaters) and brain fog are ALL huge red flags for Lyme. PLEASE, PLEASE send me a PM. I want to help you and know first hand (personal experience) about Lyme causing POTS. I can refer you to a real Lyme doctor who knows about testing and treatment. Lyme is treatable, even at the chronic stage. PS. Mayo knows nothing about Lyme. Been there, done that.
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