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  • Bunch of random symptoms ... suspect lyme disease

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    Old 07-02-2016, 05:26 PM   #1
    andybisnut
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    Bunch of random symptoms ... suspect lyme disease

    Hi everyone,

    First off, good to virtually meet everyone. This post is going to be a little long-winded, so bear with me. I've had a bunch of seemingly random things happen to me in the last month or so, and I am starting to suspect an infectious disease such as Lymes.

    I'm a 35-year old male, and I am married and have three children, ages 7, 5, and 17 months.

    OK, here goes. For the month or so leading up to when my other symptoms started, I felt a little under the weather. A little tired, a little lethargic maybe, but minor enough where I ignored it as "tired parent syndrome."

    Then maybe a month or so ago, I started experiencing UTI-like symptoms: mild burning, urgency, etc. Dealt with it for a while because it really wasn't that bad, and I've had a UTI before and wasn't overly worried.

    Then, on Tuesday of last week, I am sitting at work and the left side of my face and left arm started tingling and felt sort of numb. I panicked a bit because I imagined that's how a stroke feels. Went to urgent care and they checked my cognitive and motor functions; no sign of stroke. The numbness and tingling happened multiple times throughout that week.

    Thursday I went back to urgent care because of the urinary stuff. They did a physical exam and put me on Cipro to treat prostatitis. About halfway in, I realized the Cipro REALLY wasn't agreeing with me, and I switched to Bactrim instead. Still taking that.

    And then, the numbness / tingling seemed to settle into a tension headache with a little numbness...felt like I had a tight band around my head. Finally, on Sunday June 26, the numbness happened again so I went to the ER. They did some tests, attributed my issues to a migraine, didn't seem overly concerned (easy for them to say!).

    My primary doctor had ordered an MRI of my head and neck to rule out anything really bad. Head and neck MRI were completely normal. I also have a urology appt scheduled for July 8, just to be safe there with the urinary stuff. I also just had blood work done for a Lyme test, but I won't get the results back until Tuesday the 5th.

    Now, my jaw has started to randomly hurt. I feel very tired and lethargic, and I feel very disconnected from the day-to-day activities of life. I get cold sweats and generally feel crummy. I feel like my eyes are more light sensitive than before. It has been almost impossible to focus at work and I'm super stressed and anxious about it all.

    Anyway, I'm not really looking for a diagnosis here; maybe just moral support. I'm convinced I have Lyme's or another infectious disease, as these symptoms seem too random to just have happened all at once.

    Thanks for your support and comments!

    Last edited by andybisnut; 07-02-2016 at 05:30 PM. Reason: Minor edits

     
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    Old 07-12-2016, 09:49 AM   #2
    spm222
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    Re: Bunch of random symptoms ... suspect lyme disease

    Hey Andy,

    Your experience sounds a bit like mine. I was bit 35 or so times by a swarm of small biting flies along the Hudson River...exactly one year ago yesterday. Within two months I had cold-like symptoms, odd fatigue, confusion, weakness, tingling, etc. Scary stuff. Long story short, I eventually tested positive for Lyme and a coinfection, bartonella. But, before that I went through the primary care doc that dismissed lyme and went through the ENT doc and MRIs and all that good stuff. At least they confirmed my brain was normal! I wasted about 4 months that I could have been treating by not finding the right doc early (see the next paragraph).

    BE SURE to find yourself a doctor known as a Lyme Literate MD (LLMD). I think there is a pinned link near the top of the Lyme message board on how to find one near you. An ordinary infectious disease doc is "old school" in relation to recognizing and properly treating Lyme. A LLMD should also test for the coinfections that often come with tick bites (many of those bugs have overlapping symptoms).

    The good news for you is that you're already on Bactrim, which is effective on Lyme. But it would be wise to find an LLMD sooner or later so you don't interrupt the dosing of Bactrim for too long. Even if the Bactrim causes a false negative on a test (because it might mess with the tracing of the antibodies) a LLMD will clinically recognize the lyme and treat it.

    I'm on month 8 of antibiotics and am 95% better than I was when I was in your situation. Good luck, you will get better with the right treatment!

    Edit: I just read that you had a lyme test already. There are labs that are more reliable than others, be aware of that. Igenex is the top one for lyme.

    Last edited by spm222; 07-12-2016 at 09:54 AM. Reason: addition

     
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    Old 07-17-2016, 08:22 AM   #3
    andybisnut
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    Re: Bunch of random symptoms ... suspect lyme disease

    Hi spm222,

    Thanks for the reply! I sought out an LLMD and found a good one reasonably close to me. She decided to treat me based on a clinical diagnosis of Lyme and Bartonella. I am on a cocktail of antibiotics for a month, maybe longer. Symptoms haven't gotten worse, but I can't say I feel better yet (only been on antibiotics for a week and change now). I am sending in an Igenex blood test at some point this week.

    Symptoms come and go. Seem to be worse in the morning and evening, with during the day being the most symptom-free. One day I had a really great day, but then the next day it was back to "normal." Current symptoms include:

    -Pressure that starts in the temples and then turns into a bad headache
    -Stiff neck and slight numbness, sometimes feels stiff/numb down into my shoulders
    -Sore and stiff jaw
    -Headaches
    -Numbness and tingling in legs/feet
    -Random sweats
    -Fatigue; basic activities seem kind of overwhelming
    -Unusual anxiety and depression that comes and goes; atypically grouchy and sad
    -Lower back ache
    -Groin pain / urgency have definitely improved with antibiotics, but not totally gone

    I don't feel full on ill, if that makes sense, nor do I look particularly sick. I can get through most days, but I think the neurological stuff stresses me out the most. I've got a full-time job and three kids so I have to keep plugging away.

    So that's about it. My Dr. said it would get worse before it got better...I've read some people take months and months to feel better.

    I can't shake the feeling that there's something else wrong with me since I haven't had a positive test, but my Dr. said even the Igenex tests can produce false positives. It's a wait and see kind of thing, I guess. I am meeting with a neurologist this week, just to be safe.

     
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