I am a 21 year old male living in Connecticut. I apologize if I jump around a bit, I'm going to keep this as chronological as possible; but as many of you know, it's hard to record medical history when you didn't even know you had the illness in the first place.
Last year (Aug 2014) I was hospitalized for what the doctors thought was meningitis. I never got a lumbar puncture so it was never confirmed; I eventually got better. That month was absolute hell for me. I was tested for Lyme then, but only the ELISA screening which was negative (which I know now was probably a false negative).
Looking back on my medical history, I have gotten sick (or flared up from Lyme) every 4 weeks since then (and perhaps before then - I'm not positive that was my initial exposure). I have also had a history of back problems that have never been figured out after a slew of MRIs and physical therapy.
In Nov 2014, I had lesions of ulcers break out on my scrotum. I had not been sexually active in over a year. I went to a dermatologist who suspected herpes. I was tested for HSV1 and 2 twice and was negative both times (to my relief). This "rash" has not come back since.
In Jan 2015, I began experiencing severe pelvic pain that extended into my perineum, left testicle, left buttock, and radiated down my left leg. I was hospitalized and had ultrasounds done on my testicles as well as kidney, ureter, and bladder. All came back normal. I was treated twice for epididymitis which did absolutely nothing. I have since self-diagnosed this pain as severe pudendal neuralgia (this seems to describe the pain very well). This pain continues to be severe today.
Mid July 2015 I woke up with a fever and all sorts of aches and pains (4 weeks after the last time I got sick). I decided this was the last straw and went to my primary physician and explained everything; including how my lymph nodes have been consistently swollen for a few months. He ordered up a bunch of blood work:CBC, ANA, Sed rate, EBV, CMV, all the normal stuff... except Lyme. I thought nothing of it since I did not know much about
Lyme. All bloodwork came back normal. I also had a chest x-ray on my lymph nodes which came back normal.
He sent me to see a general surgeon to look at my lymph nodes. The surgeon did not recommend a biopsy and he sent me to an infectious disease doctor. While waiting to see the infectious disease doctor, my tonsils swole up more (I have always had very large tonsils) and developed white patches.
The infectious disease doctor claimed I had "no sign of infection." Recommended a GI to check for Crohn's and perhaps a rheumatologist.
I saw the GI who scheduled me for an MRI with and without contrast on my intestines as well as an upper endoscopy (both of which I have since postponed). He saw my throat and recommended I see an ear, nose, and throat doctor.
When I saw the ENT he took one look at my throat and said "well you have mono." He was also the first doctor to suspect Lyme disease after hearing my whole medical history (first one to actually listen, too). He ordered more bloodwork - retested me for EBV as well as ELISA and Western Blot. It is also worth mentioning that he put me on a 6 day cycle of Prednisone to bring down the swelling of my tonsils (I could hardly swallow or breathe).
My CBC came back slightly anemic and I had a high WBC count. Also, I was now positive for EBV (mono) and my ELISA was positive. My Western blot had 3 reactive IgG bands (23, 39, 41) and 2 reactive IgM bands (23 and 41). This is when I started doing research and found the problem I had - some doctors will believe I have Lyme, some doctors will say it was a false positive. My ENT seems to believe I not only have Lyme, but that it is CNS Lyme. He also suspects co-infections.
Here is a list of my current symptoms (though many are migratory and/or intermittent):
Low grade fever
Enlarged lymph nodes (submandibular, axillary, inguinal)
Drenching night sweats/day sweats
Weight loss (greater than 20%)
Pudendal neuralgia (severe)
Apthous ulcers (have had these my whole life)
Pain/pressure behind eyes, red eyes
Abdominal pain, nausea, lack of appetite
Heart palpitations, chest/rib pain
Sleep cycle disruption (can't fall asleep before 3-4am)
Psych abnormalities (mood swings, irritability, depression, anxiety/panic attacks, crying without reason, trouble putting thought into words)
Currently I am only being treated with Omnicef (600mg daily). My ENT put me on this to get me by until I see the next doctor. My ENT (the only doctor who seems to care) referred me to another infectious disease doctor who I am seeing on Thursday, though I am skeptical. I would like to see an LLMD but it is just not in my budget.
Does this sound like classic CNS Lyme or could this all be in my head? Is Omnicef even a good treatment for Lyme? Has anybody had any luck at all with infectious disease doctors, or any doctors who are not LLMDs?
Post Edited (Teejay86) : 8/18/2015 10:09:42 PM (GMT-6)