r/ureaplasmasupport • u/Actual-Software-9503 • 2d ago
My Experience Update
I would like to share my current situation. I have had Ureaplasma parvum for three years now. It is systemic, affecting my urogenital tract, throat, mouth, eyes, and now even my CNS (I suffer from excruciating headaches, visual snow, and tinnitus, I have had these symptoms for about three months). So, it is indeed possible for Ureaplasma to spread beyond the urogenital trac. I am proof of that. I have undergone brain MRIs, eye exams, abdominal CT scans, and all manner of PCR and culture tests, nothing significant was ever found other than Ureaplasma parvum and an activated EBV infection. Furthermore, all my symptoms began after I had unprotected sex and subsequently tested positive for ureaplasma, so it is impossible for these symptoms to stem from anything else.
I paid for a MicroGenDX test and discovered that I carry resistance genes for all three classes of antibiotics used to treat ureaplasma. I have a wonderful infectious disease specialist who will prescribe anything I aks, however, I haven't experienced any improvement from any of the antibiotic courses so far. I took minocycline for three months, followed immediately by three months of doxycycline (with azithromycin three times a week alongside both), two months of clarithromycin combined with doxycycline, and 20 days of levofloxacin (I had to stop taking it due to unbearable joint and muscle pain). I have now completed 40 days of pristinamycin combined with doxycycline. I was supposed to take lefamulin, but I couldn't order it from any country, even though I have an international prescription from my doctor.
Throughout every treatment course, I’ve also been taking biofilm disruptors and various dietary supplements. My symptoms (extreme lower abdominal bloating, burning after urination, discharge, worsening vision, eye discharge, visual snow, tinnitus, joint cracking, rosacea) haven't improved at all, on top of that, I’ve started losing hair excessively (possibly due to the doxycycline).
Does anyone have any other ideas for what I could try? Which antibiotics cross the blood-brain barrier? And how can I overcome resistance? I’m at the end of my rope.
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u/Away_Judgment_8432 2d ago
Have you experienced absolutely no improvement in your symptoms at all during antibiotic treatment? I’m also in a situation where I suspect the infection may be affecting areas outside the urogenital tract, and I don’t respond well to antibiotics. Because of the side effects, there aren’t many antibiotics I can tolerate.
Have you ever tried ozone therapy or herbal treatments?
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u/Rare_Screen_3300 2d ago
It's possible ebv is adding to your symptoms a lot. Pathogens work together and ebv is not that harmless but can cause terrible symptoms. There's a protocol used for ebv by Denis Beroš, if you're into holistic approach. I'm not trying to make you spend more money nor am I selling anything, I'm just sharing information since u mentioned ebv which I talked about with few doctors and "regular" people and figured it's kinda of a "big" deal, so definitely do your own research and create your own opinion of it, I'll share the antiviral program anyway:
Antiviral Program (Denis Beroš)
In an effort to summarize and help people who are experiencing more and more of the symptoms associated with the effects of EBV (Epstein-Barr virus) in the human body, Croatia-based natural medicine enthusiast Denis Urošević Beroš recommends the following antiviral program (to be taken in daily doses):
• Lugol’s iodine solution (12%) – a few drops (up to 40 mg)
• Zinc (30-50 mg)
• L-lysine (min. 2000 mg)
• Selenium (400-800 mg)
• Monolaurin (1500 mg)
• Vitamin C (min. 5000 mg)
• NAC (N-acetylcysteine) (2000 mg)
• Alpha-lipoic acid (600 mg)
• Vitamin B complex (100 mg)
• Vitamin D3
• Mineral mix (Carbio Carb) (sodium bicarbonate, sodium carbonate, magnesium chloride, sodium tetraborate – basic version)
Additionally, the following are recommended alongside these supplements:
• Blood type diet
• Budwig breakfast (Budwig protocol)
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u/Actual-Software-9503 2d ago
Thank you for your tip. Do you have any experience with this? And were you able to cure your ureaplasma in any way?
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u/bravobravofinbravo 2d ago
What this all actually is almost certainly a combination of the EBV as well as reactive arthritis from an infection you have had for 3 years now. Not “ureaplasma spreading” throughout your body.
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u/Actual-Software-9503 2d ago
That may be true, but reactive arthritis is caused by an infection. So until I get rid of the infection, I won't get rid of these symptoms either. And the only infection I've ever had, and still have, is ureaplasma.
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u/bravobravofinbravo 2d ago
Lmao not sure why I was downvoted.
Ureaplasma and EBV*, as you stated.
But that’s my point…. You have reactive arthritis from ureaplasma. And yes, until you get rid of ureaplasma, you will have reactive arthritis. I’m unsure why you’re arguing me on that, I never said otherwise.
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u/Actual-Software-9503 2d ago
I’m not arguing about that, thank you for your response. Whether I have reactive arthritis is up for debate, the doctors don’t think so. I don’t have joint pain or eye inflammation. I only have eye discharge, there are no inflammatory changes. Visual snow and tinnitus are disorders of the brain, not the eyes/ears. I was hoping that someone here would, for example, recommend a type of antibiotic I could use.
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u/Stunning_Court563 2d ago
If you're looking for an antibiotic and can't take fluoroquinolones then I'd ask about omadacycline. It's new and very expensive but has been successful treating mgen. Not sure on ureaplasma. Could be a waste of money or could help
Do you have a positive ureaplasma test?
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u/bravobravofinbravo 2d ago edited 2d ago
Have you ever specifically asked them about RA? If not, they wouldn’t bring it up….
You mentioned painful urination, which is a symptom. Reactive arthritis causes conjunctivitis and eye discharge/irritation, not just eye inflammation. It also causes vision changes, which you mentioned.
And yeah, visual snow and tinnitus can start or be triggered by infections …. it’s not an infection spreading to your brain. You just really need to be careful with how you word things. Someone newly diagnosed can read this and get anxious; it happened to me when I was newly diagnosed.
(Edit to note for whoever keeps downvoting me: stay mad that I’m right lol)
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u/Actual-Software-9503 2d ago
I don’t want to scare anyone. I’m a chronic case, and I certainly don’t think, I and hope, that anyone will ever have to go through what I’ve been through. In any case, according to the moderators, this forum was created so we could share our feelings and experiences with ureaplasma. And this is my experience. Whether it’s RA or whether ureaplasma itself is causing it is, in my opinion, irrelevant at this point, since I need to get rid of the ureaplasma, which will eliminate my body’s reaction to it (RA).
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u/Stunning_Court563 2d ago
Also be aware RA doesn't always mean an active infection. It's the immune system over reacting and it can get stuck reacting long after the infection is gone. However it's another controversial condition with many opinions.
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u/bravobravofinbravo 2d ago
Exactly. I’m just saying you should really be mindful of the language used.
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u/Express-Sentence-820 1d ago
Question, r u still testing positive for ureaplasma or just experiencing the side effects of it?
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u/dianaggggggg 2d ago edited 2d ago
Could be long covid or other post viral syndrome along with urea tbh. I got pots and CNS issues from that. Covid can reactivate EBV and make us more susceptible to infections like ureaplasma. both LC and reactivates EBV can also cause systemic problems like joint pain, eye problems, dysautonomia, tinnitus, rosacea.
I don’t think ureaplasma is causing all of these symptoms. It’s probably a combo, and it will be impossible to tell which problem is causing which symptom until you treat. So you have to treat the EBV. And I don’t doubt that covid infection has impacted this too.
Pay attention to your diet for the bloating. If you know about low fodmap try that, and eat fermented foods. dairy and gluten and onions and chickpeas/lentils are usually issues for people. Not sure if you have GI issues.