Bunch of random symptoms ... suspect Lyme disease or other infectious disease

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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!

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  • Posted

    Hi Andy, I think you're right to suspect Lyme or something like it. Those symptoms would certainly stack up, they are very similar to mine (acute Lyme diagnosis from NHS blood test). Presumably you don't recall any kind of bite or rash? Keep us posted about your results on the 5th. I can give some more advice on how to proceed. 

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    • Posted

      Hey Matt,

      ?Thanks for your reply. I don't recall a bite or rash, but I did have a weird lesion on my arm that just went away, although it didn't look much like the telltale "bullseye" rash that I've seen.

      I also don't recall having a specific "flu like" reaction, but since I have no idea if or when I was bitten, this makes sense.

      The other odd thing is sometimes I feel OK. Like last night, I felt pretty good. Then this morning I woke up, and the pressure had returned to my head, my jaw was sore, and I was exhausted. The symptoms like to come and go as they please.

      I think the hardest thing has been the depression I've experienced along with this. It has been very hard to go about my daily life since this started. I feel very "checked out" mentally, and even something as simple as taking my kids for a walk has felt like an immense chore.

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  • Posted

    Hi Andy, I agree with getting this looked at asap.  When you do finally find a doctor that will take you seriously, an LLMD if at all possible, ask them to check for co-infections also, the LLMD should automatically know that but any other kind of doctor has no idea.  If you google co-infections for Lyme you will see the list.  Sorry, I know what you're going through, I was misdiagnosed so many times and doctors also found nothing with my symptoms for over a decade, someone finally told me of a LLMD that I went to and told me I was a severe case because he thinks I've had it for so long and I have many neuro problems.  Try to get it taken care of ASAP.

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    • Posted

      Thanks for the reply dian -- I am not sure what kind of test they're doing. I've sent an email to the folks at ILADS to see if there's an LLMD around here. From what I gather, most docs are pretty clueless about it.

      What kind of symptoms do you experience?

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    • Posted

      Hi Andy, yes the doctors are clueless, they choose not to beleive in chonic lyme and their co-infections, I have a neurologist that does not beleive in it and he just told me he doesn't think the antibiotics will help be that he and I are here to get me better.

      I have a low grade fever during the day and it goes back to normal at night (not all the time, it comes in waves), headaches on the top of my head, under the eyes and the left eyeball, left side of my face, teeth, my left arm, knees are stiff, right foot and right big toe joint, memory, foggy all the time, it varies, eyesight gets blurry here and there, can't drive new places because my depth perception is way off, when I look to the right I get double vision, both shoulders, sporadic painful little spots than go away and usually there is a little lump in that spot, skin and muscle burn on right thigh, bad tremors in my neck and very painful that is why I get botox in my neck, my bones hurt and sometimes it hurts for anyone to just touch my skin.  I could go on and on but I have had this for a long time so it has just accumulated.  I think it all started with a low grade fever and disqusting red eyes that I never went to the doctor for then a few months later I was so exhausted that I had a hard time getting off the the sofa for more than a couple of minutes, that lasted for 3 months, I also blacked out for less than 2 seconds I think and was totally disoriented.  I had an MRI and they saw white matter lesions or something.  Oh yah, I am also fatigued all the time.  But anyways, I went to many doctors for many years and was told I have fibro and cervical dystonia but still there were many symptoms that could not be explained. It's a horrible sickness and I am only on month 3 of antibiotics and was told it will take a long time, I don't know how long I forgot to ask.  I have another appt with the LLMD on Friday and hopefully he can give me a better timeline.  My blood tests were sent to California in USA, (not sure where you're from) this is where they do the best tests in the U.S.  It looks like I have lyme and Babesia but I havent' talked it over with the LLMD yet, he told me even if the tests came back negative it doesn't matter because lyme is clinically diagnosed and that the spirochetes hide well.  So, as you can see it has been a battle and that is why you need to try and get help asap and don't give up, in my case it only hasn't gotten worse through the years.  The man that told me about this doctor went through 4 1/2 years of treatment and is almost normal except for little problems, he was ready to go to hospice.  He was on the edge of death.  He told me about this doctor and now I have hope and only wish the same for you and anyone else that is having such a hard time finding help. 

       

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    • Posted

      Dian,

      Wow, that sounds really awful. I'm really sorry you've had to endure this. Wish I could wave a wand and make it all go away. Have you had any success with the new Dr? I'm in the U.S. (Minnesota) and there seems to be some decent labs around here.

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  • Posted

    I already have a backup plan in my mind. I know there's a good chance that the test results I get could be negative, but that they're really not that accurate. If my the test is negative and my GP blows me off (I have no reason to believe he will, since he has been helpful and empathetic thus far), I have found a few LLMDs near the area, and will reach out to them instead. If the test is negative, I'd still like to try a 4+ week course of oxy just to be sure. I have a feeling it's going to be positive, though.

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    • Posted

      Hi Andy,  go to the LLMD, it is not Lyme that you may have, it might also be co-infections that come with it, very common when you have Lyme but regular doctors don't deal with that and the patient keeps going on and on and getting sicker and sicker.  Remember the co-infections.  That's wonderful that you have LLMD's around you, I had to go to the next state.

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    • Posted

      As you know, 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).

      Symptoms come and go. One thing I've noticed is that the numbness that used to be in my head seems to have been replaced with an awful migraine that seems to go from my temple to the base of my neck. Possibly a herx, because it's quite painful when it flaresup. Overall symptoms seem to be worse in the morning and evening, with the afternoon 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.

       

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  • Posted

    Hi everyone,

    Thought I should post an update on this.

    The blood test from my clinic came back "negative," however...

    I found a wonderful LLMD through an ILADS "referral," and I saw her today. She was private and not covered by insurance, but at this point I don't care. She went through a symptoms checklist and thinks it's very probable I have a combination of Bartonella and Lyme, and maybe one other. We are going to do a Lyme test, but I'm not going to do that until next week. She started me on a 1-month cocktail of antibiotics. She was incredibly knowledgeable of Lyme and I am lucky to have found her. Hopefully this is what I have and the antibiotics start kicking in. I'll report back if I have any herx reactions or other issues with the antibiotics. Thanks for your support and suggestions ... it was the urging of several on here that got my butt in gear to seek out an LLMD, so thank you for that! 

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    • Posted

      Hi Andy,

      I am going through almost an identical situation. 6 weeks since symptoms started after spending Memorial Day weekend near the beach in Massachusetts. I went into dunes and brush with just a bathing suit.

      I thought nothing but a normal virus at first. I had a low grade fever and extreme fatigue that lasted 2 weeks but my doctor said it was nothing. I also had a fairly dry cough but am not sure if that was related or not.

      At 4 weeks when symptoms were still showing (except cough) I went back to my primary and got tested for Lyme, which came back negative. I also tested negative for diabetes, mono, walking phneumonia and thyroid issues. Kidney and liver function were good.

      He told me to wait it out for 2 more weeks because it may be "post virus syndrome".

      About a week ago I began having a tingly tongue which turned into tingly/numb/weak arms and legs. This hasn't stopped and really freaks me out also. I went to see an infectious disease Doctor. Who claimed he was unsure of what I had but agreed to put me on Doxy for 30 days. Today is day two of the cycle.

      I am now searching for an LLMD and plan to make an appointment.

      Anyway, I hope you feel better soon enough, I know how frustrating and scary this is. Please keep posting updates as I found this very helpful!

      Bobby

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    • Posted

      Good luck getting it sorted out, bobby. Smart of you to seek out an LLMD. It's good to know that we're not alone in dealing with these crazy symptoms. On Monday, I sent in a blood test, so we'll see what that says.

      I've been on antibiotics for almost two weeks now. I have good and bad days. Neurological symptoms are still really botherhing me, especially face and neck numbness/stiffness. Sometimes my left leg and foot feel weird too. Sort of numb. My jaw is also bugging me off an on. Thankfully, the urinary symptoms I started with are finally getting better.

      The hardest thing though is I feel like I've aged 30 years since this started. I am so unbelievably exhausted and lethargic. I get tired walking up my stairs. I'm ready for bed by 7 PM. I used to be a night owl, preferring to stay up until midnight or later. I'm 35 going on 65, I guess. I have no energy to play with my kids. The thought of mowing the yard seems almost overwhelming. If anyone has any tips on dealing with the exhaustion from this, please let me know!

      Fingers crossed I start to feel better soon. I'm on 4 different antibiotics at once, which I'm guessing could have something to do with the exhaustion as well.

      Thanks for your comment. Hope you get better soon.

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    • Posted

      Hi Andy,

      How are you feeling these days?  I hope you are feeling much better.  I'm interested to see if your neuro symptoms subsided.

      I've been on doxy for 2 weeks now.  The first week was pretty bad and I felt pretty sick.  The second week was better, but really up and down.  However the last few days I've felt pretty good.  Overall, I'd say my symptoms have improved, but are still not gone. Fatigue is a little better. The tingling and weakness in my limbs seem to be sticking around, although I don't think it is quite as severe.  Hopefully 2-4 more weeks of treatment will take care of this.

      Hang in there and stay positive!  I know it's easier said than done, but we'll figure it out eventually.

      Bobby

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