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.

[Curmudgeon76]

Patsy,

I am going to ask about the Igenex testing.  What exactly is the CD 57 count?  I'll ask my doctor to order that.  What antiviral drug should I talk to my doctor about, Acyclovir?  I know this is a common antiviral but I was under the impression it is generally only helpful against herpes virus'.  Still, anything would be worth a shot at this point.

[patsy10]

My levels as you describe above are also low or very low as well.  Lyme disease causes these levels to be very low (low sed rate, CRP). It would not affect ANA because it is not autoimmune.  It's infectious.  This would explain your low grade fevers.  It it's from the mono than an antiviral should help. I really think you should have Igenex lyme testing as well as a CD 57 count.  When all tests come back normal lyme is a likely cuprit.  I really would consider seeing a lyme-literate doctor.  You can find one in your area on lymenet dot org.  Do some research on it.  The amount of time you have taken antibiotics would barely touch the tip of the iceberg. The chances of finding lyme in spinal fluid is very low even if you have it.  It's something like 10%.  You may never know what you have for sure.  One of the neuro's I saw said "there is no test available in today's modern medicine  that will tell us what is wrong with you."  He said the central nervous system problems that can be identified (like MS) usually have a worse outcome.  He said the ones where the tests come back normal usually have a benign outcome in the  long run.  After  2.5 years I still have no answers.  Prepare yourself for this possibility.  Yes, autoimmune problems can cause low-grade fevers.  Lupus is one example.  I would think by now though it would show up on testing.  Other than a repeat spinal tap, I don't think there is any other test left, other than the ones I mentioned above that you could have done.

[Curmudgeon76]

The thing I don't understand is, since the onset of this illness, my sed rate, metabolic profiles, c reactive protein, ANA, etc, have all been normal or very low, and doctors tell me that these low values indicate a very low chance of any serious disease process or inflammation, but I've been getting intermittent low grade fevers and have been on several courses of antibiotics.  Nothing seems to be touching whatever this is.  Can autoimmune conditions produce low grade fevers?  Still, I would think a comprehensive autoimmune profile would detect something like that.

[Curmudgeon76]

I've had an ANA run several times and it's come back negative.  However, if I had some viral induced autoimmune condition, would that necessarily show up with a positive ANA?

[patsy10]

I don't know too much about the myelogram.  I haven't had one.  It sounds like a scary test to me.  Why do they want to do it?  I think the post above from ctcollins says it pretty well.  When is the tap?  My evoked potentials were normal too.  It took forever, like 5 or 6 hours.  I was numb all over the day I had it and it was still normal.

[ctcollins]

I have had 4 in the last 9 months and the only side effects for me is a severe migraine for about 4 or 5 days but then i allready have migraine problems, You also have alot of the symptoms i do including the dental problem and they know think it is Systemic Sclerosis, I think you read my post under yours and would ask them to run an ANA test.