I've been dealing with symptoms since the first week of July. I am in desperate need of help and hoping this will ring a bell with someone. I have an infectious disease appointment in 7 weeks, but there's something in me that says something serious is going to happen if I wait that long. It feels like I'm just waiting for a seizure or some catastrophic event to send me to the ER for this to get treated.
Beginning:
A flare would originally start with ejaculation which lead to tingling in the lower back, then pain in testicle and/or bladder area, then the next day I would feel cold intolerance, cold hands and feet, racing heart, dizzy, headache, eye(twitch, pain, blurriness) head pressure, motion and life around me feeling like it's too much to take in, almost like hallucinating. Then the head stuff would stick and I'd feel tightness around the back of my neck leading to my skull, the top of my forehead and my sinus would feel full. Then I start feeling odd stinging sensations above my eye and in the places where I feel the pressure, and at times would have the sensation of breathing in tea tree or vick's out of nowhere. I've felt a lot of twitching in my head and sinus, and oddly my leg as well. Odd pain in my spine and shoulder. There's a rash running around my ear and down my neck especially when symptoms are bad. During this period I will start sleeping 10-12 hours a day when I'm usually good with 6. I experience palpitations and high, erratic heartrate often. Even while resting. When this flares up, it feels like I'm going to die and all I can do is lay and shiver under blankets in a hot room at times.
So, I finally correlated this flaring up with ejaculation after about 50 days. It took a long time because of the 1-2 day delay from ejaculation to other symptoms flaring up. At this point I haven't ejaculated for 41 days and, up until 4 days ago, I was mostly symptom free. I was just dealing with some residual head pressure, sinus fullness, the rash and an eye twitch. I was feeling mostly myself and able to go about my life for over a month. I thought "Ok well if all I have to do is not ejaculate until this goes away or is treated, it's not so bad".
Current:
4 days ago it felt like something changed, like whatever was stuck in my head got more aggressive. Systemic symptoms are back, cold intolerance, feeling dizzy and unable to carry out work. Even typing this up is much more difficult than I know it should be. It feels like something is growing from the back of my head up and around. I'm now having very extreme, uncomfortable tickling sensations running from the base of my head in the back around the side to my eye and up around each side near my nose. It feels like someone is zapping me or tickling me inside of my head. There are a couple of nodes or bases of foreign matter that are lodged in my head and I occasionally get a stinging sensation from those areas, especially during movement.
History:
During the period of no ejaculation, certain things I've been dealing with for years have improved dramatically which I hope might be a clue. I've had very bad flaking skin, diagnosed as SebDerm, which has gotten 80-90% better. It's never been this good, usually my electronics and glasses are covered in flakes, now I can go days without cleaning my glasses and haven't had to clean flakes off my laptop in 2 weeks. I've had these little skin tags or boils on my eyelids and near my eye for years which now appear to be healing. For years I've had tingling in my lower back after sex (I thought it was possibly just my physiological response to ejaculation) and cold hands and feet 1-2 times a week, even on a warm day. Until 4 days ago, this hadn't happened at all. Also Body odor, rashes under arm, excessive thirst, rectal and urine odor, and a constant feeling of being on edge have all improved.
So far I have had an ER visit, seen a neurologist, ENT, ophthalmologist and urologist. Most tests are coming back normal. Vit D low, calcium and liver markers a little high. WBC normal. Had an autoimmune workup done that came back negative. Two brain MRI's with the most recent one showing "Scattered minimal mucosal thickening of the visualized aspects of the paranasal sinuses.", partially empty sella and 5cm pineal cyst. Urologist thinks the lower body stuff could be prostatitis.
My theory:
I think I've been keeping something at bay for a long time. The rectal odor and lower back tingling first presented nearly 10 years ago. I mentioned them at a few doctors appointments and they were just shrugged off. I think whatever pathogen is causing these symptoms has recently found a way to spread. Even though I know bacteria are far more common, I think a fungal pathogen is most probable since my sebderm, rectal itch(which previously responded to antifungal creams) and odor, and other rashes in the body have gotten better during this time. Also the tea tree/vicks sensation seems to be found in fungal infections if I'm not mistaken. Slow, creeping presentations also seem to fit fungus.
Of note, I was positive for chlamydia on my first STD test years ago when I had already been sexually active for years. I know cryptic chlamydia can be tricky to Dx and treat. I did have a knee that unexpectedly got swollen years ago.
My urologist wants to start with Antibiotics and prostate massage. If this does happen to be fungal, is taking antibiotics risky? Wouldn't it possibly free up room for it to spread? Is there anything I can do at this point to get faster, accurate treatment and testing? I'd really like to identify the pathogen. I have 2 young children and it's killing me to think they might grow up without me because I didn't do everything I could to fix this in time.
