Does this sound like Reactive Arthritis?

[looking4help]

35M | 5’11 | 170lbs | caucasian | No drugs/alcohol/medication

I’m hoping someone here can offer some knowledge on whether or not this is ReA or maybe something else that is known. This current flare is concerning me since my left side now feels affected, feeling of fluid in veins or sinuses if there are any in back of head, above ear, and around eye (I’m not good with anatomy, sorry). Eye pain, dizziness and overall malaise have returned. Right knee slightly swollen. Before this started, a few toes on left foot would occasionally fully lock up out of nowhere, I’d be forced to sit and straighten them until it went away.

Some quick cliffs:
Was positive for chlamydia on my first std test 10 years ago (had already been sexually active for 8ish years). Treated then found negative, currently negative for all STDs. Get back tingles after ejaculation, then 2 days later have eye pain, sinus pressure, head pressure, shoulder pain. This has flared up and gone away 4 time in 10 weeks, all following a similar progression and so far the only thing that has worked is abstinence. Partner is clean, no new partners, monogamous relationship and both tested after symptoms first occurred. I do remember about 11 years ago my right knee being so swollen I couldn’t stand for work or ride my bike for about 2-3 weeks. There was no injury, at the time I chalked it up to overexertion since I was biking to work and standing all day.

This all started around 9 weeks ago. I’ll try to be concise, but it’s a lot. I believe somehow sexual activity is causative but I have no idea how, I’m negative for all commonly tested for STD’s. I was reviewing paperwork and in 3 ER visits over the last 8 years I’ve tested positive for WBC and Bacteria in urine in the first two visits, this most recent one I was negative. I’ve had a tingling in my spine for a few days after sex for years, I just thought it was part of how my nervous system responds, but I’m learning this might be abnormal.
So this time one day after interrupted/unfinished sex, I woke up with extreme back tingles, pain above my right testicle and a knot/pain feeling in my pelvis, inside and down from my hip. The following day I woke up with a headache (very rare) and a twitchy right eye, intense cold intolerance which became shivering under a blanket in a warm room for about an hour feeling very panicky. The eye twitch became blurriness and eye pain, at one point I felt a tearing/popping sensation in the eye. Over the next week dizziness, and the feeling of fluid and pressure in my head on the right side developed. Any time I laid with the back of my head against the bed or on my right side, pressure seemed to build extremely quickly. Similar to when I would strain during exercise but it’s pretty much all the time. My sinus around and above the eye also feel tingly/full at times and the right ear lobe feels hot to the touch. I started sleeping 10-12 hours when usually 6-7 is enough, having intense dreams (abnormal), and morning erections(also abnormal). This phase lasted about 3 weeks. I’ve also had a very tingly/painful knot behind my right shoulder that at times seems to throb in unison with the eye or even to the front of the shoulder, though the feeling in the front isn’t as common. I recently noticed a rash developing exactly where I feel fluid/itchiness under the skin on the front-right of my head and behind my ear near my neck. It was a deep, purple rash with some nodules under the skin, it seems to be getting better.
When it’s at it’s worst it almost feels like I’m on drugs or something, if my kid throws a ball or if a movie has a panning shot, the movement is almost too much for me to handle and makes me feel very disoriented. There is intense brain fog at times and I often cannot go about a normal day. This has gone away and flared up 4 times in the last 9 weeks. The first time was the longest and most intense. Since then it’s been softer versions but the same progression. It’s all seemingly been confined to the right side until this last flare, where symptoms seem to be mirroring on the left side. I’m hoping it just gets squashed before it gets as bad as the first time on the right side.
A few things to note:
The first Dr at the urgent care prescribed 2 weeks of Bactrim. I took it as prescribed and it didn’t seem to make a difference. I’ve since had an MRI and bloodwork done. MRI was normal except for partially empty sella, but I was also symptom free at the time. Blood work was normal this time but back in Dec WBC was high, same as years ago. I’ve seen an ophthalmologist who noted trace spk in both eyes, but otherwise healthy. I have a neurologist appointment in 2 weeks, can’t get to urology or rheumatologist for 2 months. I feel as though I can’t wait any longer. I need to take control of this. Is it possible for these symptoms to be ReA? The feeling of itchy fluid in head is something I don’t see mentioned anywhere. Is it possible to be negative on blood/urine for chlamydia but for it to be in synovial fluid causing issues and somehow flaring during ejaculation? Something in my prostate or elsewhere that becomes systemic upon ejaculation?

I know this was a very long, messy post. I really appreciate anyone taking the time to digest it all and help out. I’m desperate and would love to be pointed to anything that may help

[Maz]

Hi looking4help,

As we are fellow patients here, there’s no one with the expertise to offer clues to a diagnosis. However, there have been a few gents who have passed through this discussion forum with similar questions, so you can type in search terms like “reactive arthritis” in the search box at the top of the forum and those previous posts should pop up for you to read or connect.

Regarding the rash you described – did it look at all like psoriasis or shingles? Have you had Covid?

Have you read the Reactive Arthritis Research section on this site? It’s under construction but there are some research nuggets, like what infections have been cultured from synovial fluid in those with ReA.

Also, you should find the CPnhelp.org website of help. The contention there is that the chlamydias can evade immunity by reverting to dormant “cryptic” forms and medical docs in the field have devised antibiotic protocols specifically for these patients. Here is an outline of the basic ones here:

CPn Protocols

It is odd that your knee swelling occurred a full year prior to your infection diagnosis. Is it possible you had a different infection at that time? E.g., Lyme disease can cause a knee to swell and both Lyme and chlamydias can result in neuro symptoms in some folks. Well, there are a multitude of infections that have been associated with ReA as you will find in the Research section.

Hope something here might give you some helpful pointers in your search. If you need a list of doctors, you’ll find the automated doctor list under the main drop-down menu of this site.

PS Just read this article the other day that might interest you:

Chlamydia wears a cloak, but it might not be invisible forever

[looking4help]

Maz,

Thanks for the detailed reply. I’m sorry I disappeared, life has been demanding.

I ended up correlating this to ejaculation. Right now I’m 44 days abstinent, days 5-37 were mostly symptom free, at least systemically. I had some residual head symptoms that stuck around but I was able to go about my day. About a week ago the head symptoms started getting worse, I think triggered by another illness (family had a cold). Now it feels like whatever is in my head (above my eyes and at the base of me neck at the back of my head) has found roots and a way to spread. I have no idea how to get help in a quick manner, it feels urgent but no one can tell me what’s wrong. I’ve had 2 brain MRI’s which only showed scattered mild mucosal thickening of the paranasal sinus, partially empty sella, and 5cm pineal cyst. Cervical Spine MRI shows a lot of things, is there synovial fluid in that area and can CPN or other invaders attack it? One of the things noted was a rupture, could that cause a pathogen to get loose and possibly explain my symptoms? I can pull up and paste the full report if that helps.

My bloodwork is mostly normal. Some RBC stuff has been a little out of range, calcium a little high, VitD low, albumin and another liver indicator a little high. Again I will do my best to bring all reports together and share exact values if it would help.

Here are some pictures of my rashes: https://imgur.com/a/9Wbt1JZ

Regarding the knee swelling.. I didn’t have any blood work or tests done before my chlamydia diagnosis, so I think it’s possible I was positive for a long time. I’ve recently had an autoimmune panel done and everything came back negative.

Thanks again for taking the time to reply

EDIT: I forgot to ask, there are many CPN protocols. If I were to try to educate a specialist, is there a current preferred protocol? Especially if the route of administration were to be oral ingestion?

[Maz]

Looking4help – your health journey is pretty winding and no wonder you feel confused about what is occurring. Hang in there, it’s pretty frustrating but it can take time to get a diagnosis and sometimes to find a doc to work with and with Covid in the mix, slowing down the process, even more-so!

I’m just a fellow patient, but regarding the MRI you had that showed your 5cm (2 inch)pineal cyst, did the doctor advise you on this and recommend any type of followup? My weak understanding of this gland is that it’s pea-sized and controls melatonin (circadian rhythms), and thus (presumably) sleep cycles and sleep quality. As this organ is a gland, my best guess is that an endocrinologist or head and neck specialist might be best positioned to determine if the symptoms you’re describing are related?

The CPn Help website may retain a list of docs that specialize in the protocols used by that site, so it’s worth asking there and, which protocol is used would likely depend on the clinical assessment of the doc you choose to help you. As you say, it might be that the swollen knee might be injury-related, and something quite separate from the pineal cyst.

I don’t know if the above is of any use, but sometimes it just helps to bat ideas around. Pls let us know how you get on as your journey unfolds.

[Author]

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