Crazytown- medical mystery. What do you think?

messtafarian

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Aug 18, 2013
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814
I've been so sick. I can't even explain what happened, it was like I went down a nightmare hole. It started with the hot flashes and a strange pain in my epigastric area -- GERD but also chills across my back and IBS; dizziness. It was probably the beginning of October when I started to feel wrong but I just assumed I was under stress and would get better.

I went to the doctor. She ordered a blood test. All my levels ( except thyroid) were normal except for slight iron deficiency anemia but I noted my lymph % was down and my iron binding capacity was increasing. She also ran an antibody panel and found a positive ssb antibody, one that shows up in an autoimmine disease called sjogrens syndrome. This woman started writing referrals until I was totally overwhelmed. Rheumatologist, endocrinologist, neurologist, gastroenterologist, whaaaaaaaa????

I was really upset. I couldn't do all that, I was exhausted.I kept drilling down into the internet. I just kept getting worse. I had a strange thing happen -- my parotid gland swelled up on the right side and that had never happened before to me ever. I looked it up on the internet -- salivary stone? Swallowing was impossible -- anything that had flavor gave me a sour, burning pain. That lasted for one day and then the parotid gland got better but I had a very odd type of congestion. Terrible sore throat. I assumed now I had the flu or something, but one strange part of it was that for a couple days I had what I thought was a sort of "allergic reaction" -- my face was bright red and my lips were tingling.

I had no fever. My body temperature was really low, under 97 a couple of times.

I was starting to lose time and dissociate. My ear was pulsing all the way down to my jaw. I felt like I was a million years old. I could not think straight. I was in a terrible mood. I wanted to kill myself. The world seemed so hopeless. I realized I had a terrible ear infection which is common for me, but you know how they say ear infections clear up on their own? For me they do not, but I hadn't even gone in to see the doctor for an ear infection -- I just wanted a checkup and ended up with all this *other* stuff that could be wrong. I was really confused, and getting sort of lost in my own head. I would stand in the kitchen and think...am I here? I would be talking to my family and think...did I say that? What am I talking about? I felt like I was falling backwards into my own head.

So Saturday I got an appointment with an urgent care clinic. I was prescribed a seven day course of Levaquin because even though the doc couldn't see my ear she thought maaaaybe I was right and I had an ear infection.

Four hours after the first pill I was better. A day later I was amazed at the difference. It is now the fourth day and I am starting to feel coherent. I have never been so sick in my whole life. What do you think happened?
 

LucyL

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Oct 21, 2013
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Why couldn't the doctor see your ear? Have you considered Chronic mastoiditis? Perhaps you might just want to go to an ENT instead of all the other referrals and get a thorough check up on that whole system. Gastrointestinal involvement could be from the Eustachian tube draining a bunch of nasty stuff out of an infected area.
 
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messtafarian

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Aug 18, 2013
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I had an operation for a cholesteatoma due to frequent ear infections last summer so I got a huge full workup then -- roughly 18 months ago. Saw an ENT, got MRI's, all that stuff, and there is nothing stucturally wrong as far as they could tell; and there are no tumors or anything like that. When I did reading about what to expect from the operation it was simply a given that I would probably still have frequent infections and imperfect hearing, but it was better to have the operation done since the growth could grow larger and cause worse problems.

I've asked *many* times why I keep getting these infections and it's one of those things, " no one knows". Since the operation I've had three infections, but none within the followup period and postop checkup. Maybe it's sjogrens syndrome...
 
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My opinion is that your low body temperature is the very reason that you keep getting infections. All kinds of stuff goes haywire in the brain and body when temps are too low.
 
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messtafarian

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Aug 18, 2013
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814
Thanks tbp. I'm working on it, using progesterone and adding sugar and protein. I have experimented with thyroid but tend to be careful with it since my thyroid numbers are very low, not high.
 
Joined
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Sometimes lab numbers do not correlate to symptoms...do you track your DAILY temperature fluctuations?
 

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