Desperately seeking help!!! Please read this long post, please

JPGuinness

I am in so much physical and mental distress, and I don’t know what options I have left for diagnosis/treatment. Somebody please give me some direction. I’ve posted on the headache board several times, but my problem is definitely more complicated than headaches alone. I would greatly, greatly appreciated it if someone could correlate any of these symptoms with Lyme Disease; or, moreover, any other disease/syndrome to which they have become more aware.

I’ll describe everything chronologically

1996 - I’m 16 y/o and I spent 9 days in the hospital for peri-carditis (inflammation of the sack that surround the heart). The doctors told me it is VERY RARE for a 16 y/o boy to develop this condition and it can usually be attributed to an atypical virus. After this occurrence I was basically healthy for the next 4 years; well, I did develop severe allergies and recurrent, persistent sinus disease (sinusitis).

2000 – I start having horrible eye strain, “weird headaches” and a LOT of double vision and tracking problems with my eyes. The eye strain was way out of proportion to the computer work I was doing; the headaches were either low-grade perpetual pain and numbness all around my head (particularly on the left side) or they were severe headaches accompanied with a lot of dizziness (dizziness magnified my double vision and eye strain problems). I also became very depressed this year, which is pretty-much in direct contrast to my normal mood. I began seeing a psychiatrist, who diagnosed me with depression and suspected I have Panic Disorder as well – I am always a very high-strung, on-edge person. Ok, so, an Ophthalmologist determined that I lost binocular vision and my two eyes were no longer working in synchrony. I then had corrective surgery in August of 2000. Shortly following surgery, my strange headaches, dizziness and all-around un-wellness began to diminish. I was then fine until 2003.

2003 - Severe headaches; all eye problems return; severe head pressure; pain in my jaw; strange, numbing/tingling feeling in my nose; peculiar pain in the corner of my left eye near the bridge of my nose; severe sinus disease. There symptoms persisted the whole year, despite other strange occurrences described below:

Ok, in January, I was referred to an ENT and then it was discovered that I had severe sinus disease that was not responding to antibiotics and surgery was necessary, and, subsequently, performed. After surgery, the symptoms did not get better.

During February I developed a fever of 103 F and it stayed at that temperature for a whole week. During this week, I could barely move my neck and had a horrible migraine as well as all the other aforementioned symptoms. At the end of this week, I developed chest pains that were very similar to the near-fatal peri-carditis I developed in 1996. I then went to the ER. Basically, they said flu-like and then discharged.
March: same high fever as Feb.; same chest pain; same result.
May: same high fever as March.; same chest pain; they performed Sinus CT scan and I had “Pan Sinusitis”, meaning all eight of my sinuses had dangerous air-fluid levels in them. So, I had immediate surgery, felt better and was basically symptom-free for three months.
August; same high fever for a week; same chest pain; this time I had swollen lymph glands and a headache so bad I could literally not move a muscle of my body; also, my neck was so stiff I couldn’t move my chin down to my neck. I described to my GP, “…this is the worst pain I have ever experienced”. GP suspected meningitis and referred me to the ER, where they were to perform a Spinal Tap (lumbar puncture). While in the hospital, they discovered I had a return of the “Pan Sinusitis”, Tonsilitis and a dangerously high fever. More importantly, this time they confirmed I had once again developed peri-carditis (the same thing I had when I was 16). So, I stayed in the hospital for 10 days and, after returning home, felt better for the remainder of that year.

2004 – No more fevers, no more chest pains. Headaches are worse and stranger than ever. I can’t see straight. I can’t interact normally in a social situation anymore b/c my eyes feel strained, I see double, and my eyes don’t want to fixate on anything. I am more depressed than ever. My sleep is all screwed-up.

Following my last peri-carditis episode of 2003, I had several specialist looking for various disorders/diseases/syndrome(s) that could explain and perhaps provide an underlying cause to my problems. Rheumatologist, Immunologist, Nuerologist

I had a test for Lyme Disease about 9 months ago. I thought the test was complete, but then I got a letter from the hospital saying, “…the test results for lyme disease were inconclusive” and, further, the letter said they need convalescent serum to complete the study. Well, I never thought to follow-up with that letter b/c I’ve been to every friggin’ doctor on the east coast for every disease/illness known to mankind and there was never an indication of any disease from any of those tests. So I figured I couldn’t have Lyme, b/c some other tests would have yielded an indication of this disease, right?

Currently I am diagnosed with depression, atypical cyclic migraine headaches and atypical face pain. I still get horrible sinus infections and sinus congestion/inflammation seems to exacerbate all my other symptoms. I have taking a crap-ton of anti-migraine pills, including Depakote, Lamictal, Topamax, Verapamil, Midrin, Fiornel,…etc.

So, what should I do? Just recently I discovered the symptoms of Lyme disease and it definitely sounds like a promising candidate. So should I call those people back and schedule some more blood work, in hope of diagnosing the Lyme Disease? If it is not Lyme, then what could it be??? Please – I am desperate for some direction here. I need these headaches and facial pain to go away. I want to be able to see straight, that is what I care about more than anything else. Not being able to use my eyes and having a lot of head and face pain is making my life miserable, as I can’t sleep, socialize or, more importantly, work. I’m a 25 y/o and I’m stuck in my parent’s house with no hope of getting out; and with no hope of being able to work any time soon. I am desperate. I’ve researched the internet from the beginning to the end. I’ve read every post from every hypochondriac from every message board from every health topic, and all the information seems arbitrary, inconclusive or otherwise irrelevant.

I don’t want to go through another winter feeling this way and I don’t think I’m going to do it anymore. I’m at the very edge. I don’t know which doctors to see. I have yet to meet someone with my cluster of symptoms. I used to be a very outgoing, outspoken, extraverted, well-educated personable guy. Now, I am physically ill, depressed and lifeless.

Thanks for reading