Unanswered Questions, sickness and neurological symptoms

[Curmudgeon76]

Greetings all,

This is a a bit long so bear with me.
I'm a 25 year old male. I contracted mono in November and got a very bad case of it and didn't take adequate time to rest. I was only out of work for 2 weeks and during that time was somewhat out and about.

Symptoms of a new illness presented in March, starting with a canker sore, and progressing to flu like symptoms. I noticed greenish/brown mucus and tooth pain and went to doctor for an anti-biotic (I think Bactrim). I took the antibiotic which seemed to clear up what I thought was a sinus infection but I still wasn't feeling better and my glands were very swollen (they still are too a degree). The doctor prescribed Augmentin due to the remaining swollen glands and remaining flu like symptoms.

On April 16th, I had tingling in my hands and feelings of pure exhaustion. My blood pressure was lower than normal (for me) and I felt somewhat light headed. I had my girlfriend bring me to the ER where I had labs, urine and chest x-ray, all of which were normal.

A few days later, I was working in art class (still feeling very sick) with an x-acto knife that wasn't especially clean and jabbed myself in the thumb. It'd been 11 years since my last tetanus booster. I didn't get one right away, and the next day, experienced a muscle twitch under the skin while I was at work. I immediately panicked and went first thing the next day for a tetanus shot.

Over the course of the neck few weeks, I noticed muscle weakness, twitching in the jaw and neck stiffness, and an increase in heart rate (especially with light exertion and going from sitting to standing position) and general feelings of exhaustion. I went to my primary care and expressed my concern about Tetanus, but Dr. said due to my proper vaccination history and treatment within 48 hours of wound was a near impossibility. My doctor suspected Lyme disease when I mentioned I had noticed a few red bumps on my neck upon waking a month or so earlier, and prescribed me a 3 week course of Doxycycline but symptoms did not improve.

I found that I had no temperature even though I was certain I must have a fever (hot flash feelings) and it was often subnormal (sometimes as low as 96.9) The highest I ever had was 99F. The weakness has since progressed to twitching all over my body and tenderness in muscles. I have some swelling or slightly increased muscle tone in the jaw and pain in the lower jaw and teeth (having two horizontally impacted bottom wisdom teeth that never got removed probably doesn't help) I was experiencing (and still am) jaw and throat tightness, neck stiffness, and what the doctor referred to as "trigger points" in my back. I've had some spasticity and my muscles feel heavy and I have burning sensations throughout my body that seem to come and go and affect different areas at different times. I was diagnosed with PAC's (benign heart palpitations) in 05' and they have since gotten worse, and I sometimes have feelings of shortness of breath or labored breathing and palm sweating. The symptoms seem to be getting progressively worse slowly. I'd been having some constipation as well as weight loss (a lot of which is due to poor eating habits from the severe anxiety that's been accompanying this). Dr.also put me back on Augmentin again for 2 weeks, and when I expressed further concern about the tetanus, a one week course of Keflex (I am basically a walking anti-biotic: could this be killing good bacteria and causing more harm than good?)

I'd have every test in the book (just about) including: multiple labs, CBC with differential, c reactive protein, sed rate, two lyme disease tiders, a comprehensive western blot lyme test, two HIV tests, multiple blood tests for muscle enzymes and functions, EMG muscle testing, MRI of brain (which revealed slight abnormality which neuro said was consistent with CFS or lyme), test for Lupus, rheumatoid panel, allergy test (blood test), CT scan of everything from base of lungs down (due to constipation and tenderness above groin area), and echocardiogram (heart ultrasound), two EKG's, and all results (except for the MRI) have been NORMAL. My white and red blood cell counts however were on the low end of the normal spectrum, my sed rate was very low (1) which I was told was good. I've been taking Lexapro and Xanax to try and manage the symptoms but I've been on the Xanax for several months and my body is building up a tolerance to the dose I'm on. I'm been taking tylenol like it's candy. The muscle symptoms range from painless twitching, to stabbing pain and tightness which can be quite painful at times.

I've seen two neurologists, both of which feel my symptoms are not a result of a neurological disease (though the second doctor had a much better bed side manner and is ordering a spinal tap to rule out anything potentially serious such as MS or ALS), and I'm having a soft tissue MRI of jaw and neck.  I've seen two infectious disease doctors who assured me Tetanus is impossible considering how long it's been since my injury.

I'm very confused, scared and am convinced I'm dying. Am I alone in this? Has/dose anyone else experienced these type of deabilitating symptoms here?  Do these symptoms sound like they could be a form of some type of toxicity?  I feel like I'm getting progressively worse.  Any advice on where to go next would be greatly appreciated.  Thanks so much in advance.

[patsy10]

Yes, this is true.  You may remember I mentioned that in an earlier post  regarding infecting the heart.  What I have seen in my experience is dental infections going to the heart valves.  They get infected and form "vegetations" which  can break off and embolize to the brain and cause strokes.  I saw someone with a weakness on one side of the body from the stroke.  I think your brain MRI's would have shown strokes if they were there.  A CT scan would show better, I think.  I think you would be far worse off by now but I'm no expert.  If it's in the heart there is usually a murmur and the problem can be seen on an echocardiogram.  This is very rare.  I think I I have seen this only once.  I don't think a SPECT scan would show a stroke.  I think it just shows general perfusion to the brain.

[Curmudgeon76]

yes, I've done a lot of research.  When I first got sick, I felt like something was racing through my body and I was having very rapid heart rate and a lot of anxiety, my jaw was also swollen (come to find out I've had a constant ongoing infection in my mouth since then according to my oral surgeon).

I was told that it is possible for gaseous or semi solid particles to get into the blood from a dental infection or other source.  These then circulate in the blood and with nowhere to go to escape, settle somwhere, such as the heart or brain.  I was told it is possible to have chronic brain inflammation as a result of this happening.  I believe this is called a chronic embolism.  Is this a possibility in my case?  I'm going to ask the neuro to do a SPECT scan and another doctor at the ER (I headed there the other night because my symptoms got bad, what a waste of time) told me I should be referred to a neurosurgeon to rule this out.  Still awaiting my CSF lyme results.

[patsy10]

You've certainly done your homework.  I think maybe you should do something in the healthcare field after you recover!  I think you are very intelligent and of course you will be an expert after all the research you have done.  Correct about the spect scan for blood flow or perfusion.  I know I keep mentioning lyme and you're probably sick of hearing about it but it gets in your central nervous system, causes vasculitis, all sorts of multisystem problems.  It's very had to detect but does show hypoperfusion on a spect scan.  If you read that link i posted above you'll see it shows up in spinal fluid only 7% of the time, even if you have it.  If you had a bacterial infection in your brain/cns you would need antibiotics to get it out.  There is a possibility they may never know what is causing your problems.  I'm a prime example of that.

[Curmudgeon76]

The second MRI was read as normal but it was a different radiologist and center.  I got most of the tap results back and they were all normal.  If there were something actually in there, or something reducing blood flow, that would show up on a SPECT scan correct?  I'm gonna ask the doctor to do one.  If, even though it's very unlikely, something had gotten into my brain, how would they determine that, and how would they get it out?  Would it even be possible to?  The days prior to that sensation of something literally shooting up my spine and into my brain, I was having racing heart, shortness of breath, something didn't feel quite right and then that hit me.

[patsy10]

I forgot to add vasculitis can cause those MRI changes too.

[patsy10]

No problems after the tooth extraction except it hurt a lot about a week after.  I had mine pulled under a local anesthetic. You could have nausea as a result of being put under anesthesia. You will have to be put under anesthesia since yours are severely impacted.  I would think  he would treat you with strong antibiotics as well.  Did you get the impression that he did or didn't think your teeth were causing all of this.  I think you will know after they are removed.

Regarding the bacteria,  yes the toxins cause symptoms (bad symptoms) but someone could be acutely septic and a blood culture will actually grow the bacteria they are infected with.  And yes again the white cell count can be low if someone is very immunosupressed from a severe infection.  The CD 57 count will be very low in severe infection, particulary lyme.

Regarding the MRI.  The recent one was normal right?  What exactly did the first one say?  Do you have the report?  What did the new neuro say about it?  At your age it should be normal.  The white spots could be inflammation??  I read migraine headaches can cause this. I doubt there would actually be something in there but it could have been inflammation.  It depends on how the radiologist worded it in the report.