Nice write-up. It sounds like you are well informed. Unfortunately, your doctor is not. Please do yourself a huge favor and find a reputable LLMD in your area. The number of doc appointments and incorrect information I received from doctors over the course of 4 years borders on criminal. It took over 100 physicians before I found one smart enough to put the puzzle together.
I have all the same symptoms but mine came on quick and fast following the vasectomy (within 4-5 days). I too had the ELISA/WB tests. In fact, I had it 4 times. I even took the iGenex PCR test. I’m sure you are aware of the false negative w/ the ELISA test. Most research shows a false negative w/ the ELISA roughly 50% of the time. The WB tests for certain bands. Though it includes the most popular strains of borrelia, it doesn’t include all of them. To date, I tested negative to Lyme in all those tests. It was these false negatives that prolonged my diagnosis. I’m disappointed ELISA/WB is still accepted as the gold standard. It’s not. The iGenex test I took was specific to borrelia and nothing else so it missed my problems.
MARCON’s is very specific to patients who are immunocompromised, especially lyme patients. Forgive me if this is a repeat of some of the article I sent you to above. I too have been diagnosed w/ mold. Spent 4-5 months on nystatin. All in all I tested positive for rocky mountain spotted fever, ehrlichia chafeensis, babesia, four different mycotoxins (mold), and two strains of walking pneumonia. It’s not uncommon for lyme patients to be diagnosed w/ multiple issues as Lyme does a number on the immune system and most of these bugs, like mold and pneumonia, are opportunistic infections. I’ve also tested abnormally high for EBV which is the mono you mentioned. Mono is a common culprit for fibromyalgia which I have been diagnosed with as well, even though I believe fibro is more of a symptom than a recognized diagnosis. Many lyme patients suffer from high EBV. Once again, the immune system is compromised.
A lot of your symptoms sound like classic babesia to me, particularly the depersonalization, insomnia, panic attacks, pupil issues, hot/cold dysregulation, headaches, food intolerances… I had/have all of that. I went so long without sleep early on that I started hallucinating. My break came from a high A/G ratio. My doc felt like it warranted further testing so she did a larger antibody panel. I was high for AGA (gluten) and rocky mountain spotted fever. It was at that point that she began ordering lyme tests that looked at more than just Borrelia. The lyme urine test from DNA Connexions confirmed RMSF and found E. Chafeensis. It’s important to note that two different members on this site took the same test, with the same post vasectomy symptoms, and both tested positive for ehrlichia chafeensis. I spent 7 months on doxycycline and rifampin. After that she ordered a blood lyme panel from Vibrant Wellness and they diagnosed Babesia Microti, the pneumonias, and mycotoxins.
I’ve since been on mepron, zithromax, bactrim DS, plaquenil, anastrozole, and testosterone cypionate. I just switched from mepron to malarone last week. She also has me on handfuls of supplements, creams, drops, etc…its approximately 21 pills every morning depending on the day.
Babesia is the real deal. People don’t realize or appreciate how nasty this parasite can be. It puts lyme to shame as far as symptoms are concerned. A vast majority of my harshest symptoms can be traced back to babs, including constant headache, speech issues, and intracranial hypertension. It’s gonna be a long road back but I’m hopeful. I’m not totally sure how to connect the vasectomy. Thousands of lyme patients trigger symptoms with a stressful event, whether it be pain or emotional. There are thousands of stories out there. Rickettsia, which includes both RMSF and e. chafeensis, are both well known to lay dormant in the epididymis and are well known causes of epididymitis even without vasectomy. For me, was it the pain or the exposure from separation of the vas deferens. Ironically, i developed cysts on my right testicle within months of my tick exposure and several months prior to the vas. I’m convinced the bug was in there when he cut but at this point…what difference does it make. If I could prove its still in there, my right testicle would be gone tomorrow. I’m sterile and I’m taking testosterone, they’re strictly esthetic at this point anyways.
Feel free to reach out if you need to. I’m happy to help. Please get tested with a reputable PCR lab. It ain’t cheap but it could save your life. I’d be careful removing your alloy fillings. Research shows that you are exposed to more mercury during the removal of the fillings than you are chewing on them over a lifetime. I don’t care if they use a dental dam or not, the only way to do it right is with a $120k ventilation system that most dentist aren’t willing to pay for. Alloy removal is a very easy procedure and extremely lucrative if you are desperate to have them out. Dentists are crooks and alloy removal is a very crooked and lucrative business. Resin fillings commonly have BPA and other caustic agents. You really can’t win on that front. I’ve refused resin fillings my entire life in favor of silver fillings and they aren’t going anywhere for the time being.