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Sister In Hospital Now With Ans Problems - Help Please


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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.

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I am soo sorry about your sister and I hope she gets better real soon...As for meds, I know Midodrine raises BP...

I wish I had some advice to offer you, but I don't know what to say. Your sister is in my thoughts and prayers....


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A few forum members have lyme disease and they might can offer some input. Based on what you have described, it does sound like some ANS problems are going on as well. Of course, Lyme disease is often a precursor to autonomic dysfunction. The one suggestion I might could make is to inquire about her iv's- is she getting lactated ringers or just saline or something else? Lactated ringers have helped me tremendously because they not only help with hydration but they have high sodium and potassium content which are extrememly important in the management of dysautonomias. Good luck to your family- may the doctors find a a successful therapy for your sister soon.


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Hopfully the TTT will be able to show them more to what is going on. I wish her the best and hope they are able to get to the bottom of the problem.


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