6 months with no diagnosis. Headaches, muscle spasms, feeling drunk, extreme fatigue. Help!

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My husband started having headaches, memory loss and extreme fatigue 6 months ago. It literally started with no trauma or incident. Like just switching a light switch. He took no medication prior to this and was in PERFECT health. He is 40. We have had MRI’s, multiple lumbar punctures, blood work several EEG’s, blood work, MRV and sleep studies. All are negative. They told us migranes and depression? They started him on nortriptilyne (?) and lexapro. It didn’t help. As a matter of fact 2 weeks ago he started with muscle contractions so severe at night that is contorts him into a fetal position and he screams until it releases. This goes on for hours. He began hallucinating last week and the tremors for lack of a better word have now progressed to the day hours as well. He has an episode of urinary incontinence last week and we went to the ER. He goes to Mayo Clinic and he seen every neurologist there. They said he developed serotonin syndrome and took him cold turkey off his meds. We are back at square one but the spasms and tremors have not resolved since the stopping of the medication a week ago. We had another Lumbar puncture yesterday but will have no results for 3 -4 weeks because they send it to New York for testing.  Has ANYONE had anything similar or even heard of anything like this. We are desperate and beyond exhausted beyond belief. He can’t work and has went from perfectly healthy and active and full of life to a shell with possibly 2 days max a week he can even get out of bed from the fatigue alone. Please anything you can lend in advice will be greatly appreciated. 

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  • Posted

    It could possibly be lyme or coinfections? Or mold toxicity? It may be worth seeing a Lyme literate doctor. They have tests for both. The labs they use are much more accurate, so even if he was negative on regular blood tests, he still may have it? Just a thought. I was having weird symptoms and all my bloodwork was fine. I went to a Lyme literate doctor and found out I have bartonella. 
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    • Posted

      He was tested for Lyme disease and meningitis and encephalitis. I am not sure what else the panel covered. However, on the mold suggestion, we thought of this as well. He has no pulmonary issues at all. Not even a cough. He doesn’t smoke or drink. I mean literally in perfect health prior to this.  We are definitely going to look at this path. Thank you so much for you reply.  
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  • Posted

    Mass General in Boston. The best.
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    • Posted

      We may have to explore that. We are in North Florida so Mayo in Jacksonville was our closest option. We have MD Anderson in Tampa as well we could drive to as well. With him not working and me unable to work full time because of appointments, it makes money tough. When it comes to the ones I love, I will definitely figure it out. Thank you so much !
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  • Posted

    So sorry to hear your husband (and therefore your whole family) is suffering like this. I can only suggest that you and he think carefully about what he does at work or leisure and where he had been prior to the onset of these dreadful symptoms. There are some awful poisons in our environment which have unknown effects on people,
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  • Posted

    It could be mold or heavy metal toxicity for sure. But, It could also be Lyme disease and it's co-infections as well. Even if he was tested and it came back negative it could still mean he has it. Unfortunately, Tests for Lyme are highly inaccurate. Especially, if you aren't tested ASAP. 

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  • Posted

    Has he ever been bitten by a tick?  Get him tested for lyme. Labs are not accurate. One in palo alto California is good. Sound like lyme. I went thru same symptoms. Only i went undiagnosed for eight years with many more symptoms down the road. 300,000 people a year contract lyme and the dont even catch 10%. Scary.  Was eventually misdiagnosed with fybro myalgia then chronic fatigue and then ms. 
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