u/dhyanaoceana

After years of recurrent UTIs, BV, yeast, more UTIs, my new primary tested me for something I had never heard of. My ureaplasma and mycoplasma PCR came back abnormal.

I’ve also had years of sterile pyuria and UTI symptoms with no bacteria - and way too many doctors that see my other chronic health issues who told me it was anxiety. Lol.

I also have Ehlers-Danlos Hypermobile type and was severely floxed by Ciprofloxacin in 2021. I also have intestinal methanogen overgrowth. So a lot of GI problems and microbiome upset as-is.

I am reading about treatment for ureaplasma and mycoplasma. I guess my next question for the OBGYN I see next week will be what antibiotics are my strains sensitive to.

I’m nervous reading about so many people taking moxifloxacin or Levaquin. Those will never be an option for me because I have hEDS and Cipro permanently disabled me. I live with severe and debilitating tendonosis, nerve pain and it accelerated the connective tissue degeneration from hEDS. I’m having artificial disc replacement surgery in my neck next week. I already have pelvic organ prolapse, joint subluxations and limitations on physical capability.

Who has been able to clear these infections without the use of Fluoroquinolones? I need some encouragement :)

I’m undergoing RFA at UCLA in a coupon weeks. My nodule is less than 1cm and apparently extremely well positioned. State 1, no spread to anywhere that has been detected in my neck.

Has anyone else done RFA? I think UCLA is pretty leading edge and the other endos I saw at Hoag in OC had heard of it, but weren’t keen on it since it has only been available in the US since October last year.

It’s extremely low risk, less risky than surgery with less impact and less side effects. If it fails, I can choose to repeat, monitor and do nothing or have a partial thyroid removal.

I feel lucky I get to try this as an option. So curious to talk to anyone else who has done it!

32F
hEDS
C5-C6 extruded disc with stenosis, bone spur on spinal cord and myleopathy
Back of my skull can touch my neck/back if I flex it all the way backwards

I’ve been ping-ponging neurosurgeons since January this year. I finally found one that’s considered an EDS specialist at cedars-Sinai in Los Angeles but I’m still waiting for them to finish my intake and let me knew when I can schedule a visit.

Two of them so far have told me I should do ADR but I read that’s not recommended for EDS. A board of neurosurgeons said fusion, when I pressed one to consult other opinions. The third neurosurgeon says I may need surgery but says I need to avoid it and doesn’t want to rush me. He also told me to do yoga. EDS patients should never do yoga and he didn’t seem to know about upright MRIs or anything about the different methods for assessing CCI. But I see EDS support groups and online resources take about how special imaging is needed to accurately assess instability.

Because none of the surgeons I’ve seen so far seem knowledgeable about EDS, I’ve sought out one recommended in EDS support groups and whose office claims he’s very knowledgeable.

It’s hard having this condition and feeling like it’s always up to me to figure out by myself. I’m used to this, but my neck seems serious and I don’t know how to navigate it.

In the interim, I’ve had loss of grip strength in both hands, had a migraine for 4 months straight, and now a new symptom. My throat is numb randomly. It has happened twice. A few weeks ago and again right now. I thought maybe it was a side effect from my new MCAS medication, cromolyn. I have not eaten anything I’m allergic to and my last dose was at 10am this morning. It started at 7pm tonight, so now I’m thinking maybe it’s NOT the cromolyn and it might be my neck?

Wondering if anyone can give me any thoughts while I’m in medical purgatory trying to find someone knowledgeable about my condition and what to do about my neck. Please and thank you!

At the peak of my chronic migraine pain spiral, I would get vertigo and nausea as well.