I met a girl on the bottom of a Lyme article last year before I found this board, and we became pen pals. She had Lyme but also tested positive for EBV. She continually had kidney infections and kidney pain, and her drs were convinced that it was the EBV and not the lyme which was the culprit. A google search seems to confirm that EBV is a very common cause for nephrotic issues. I remember her saying that monolauren really really helped her issue, I'm not sure if you've tried that? I've emailed her asking for some tips as well.
Came across this as well which discusses some of the possible mechanisms through which EBV might affect the kidneys (it seems like its probably through an autoimmune mechanism? although they suggest a few ways), and the neprhotic diseases it can cause. Seems like prednisone to lower the acute inflammation may help, depending on the presentation. Also, Ganciclovir seems to be useful as an antiviral. My guess is IVIG would really really help you, but you probably wouldnt be able to get it approved. But you could try prednisone as a test. If that helped then IVIG would. Only issue would be how an immunosuppresive affects your EBV. https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4400449/
I'm talking out of my butt tho since I've had all of 5 minutes to look into this and Ive never had kidney issues so its not a rabbit hole i've gone down. But I think shoring this up is probably the first necessary step towards getting better.
Def email me if you wanna talk.
W/ respect to the comments about
diet and do the infections really matter. Anyone who has seen me post knows that I was a firm believer that autoimmunity plays a huge role. I couldnt figure out why I got sick so long after my tick bite, however. Until I noticed that everyone in these chats has the same overlapping sets of issues/symptoms/vulnerabilities. I kept posting about
how chronic lyme happens when the feedback loops that maintain homeostasis break. The body should be able to rid itself of infection, and it usually can, unless there are other vulnerabilities. So I started thinking, whats hte first thing I can fix. Wheres the biggest site of inflammation. The gut. So i set out to heal my IBS through diet and some supplements. Was successful and symptoms improved a lot. Then I got onto detox. Talked to two herbalists both who told me that fixing the detox pathways were the next step. So i went deep down the rabbit hole on the billary system and I'm trying to get my liver working again (tudca, bittersX, beef liver and phosphidytlcholine). After that, i noticed one day that I couldnt handle ALA, i'd get super anxious and depressed. Turns out ALA is a chelater, and I probably have a metals issue, which makes sense since I'm double MTHFR. Got my amalgams removed, having my water tested. Just looking to remove whatever toxins I can. But something kept nagging me the more i read about
heavy metals. I was sick from about
8y old, i knew something was wrong then. I had OCD, i was always tired, i'd complain I didnt feel healthy. But I wasnt bitten by a tick until i was 17 (that I knew about
). Could it be that the metals are what made me vulnerable? From reading about
how mercury poisoning works, it basically interrupts all enzymatic activity. It screws up the microbiome, and it disrupts mineral transport. Could it be that metals were my original issue and this is what made me vulnerable to infection?
So the way I started to draw it up was metals screws up pretty much every biological process -> makes you vulnerable to infection -> screws up your gut -> bad gut leads to autoimmunity. This may not be the exact right way it happened for me, but I'm pretty sure that the infection is only a small part of it.
Yesterday someone posted about
klinghardt and i had heard about
him but hadnt read his stuff, so looked him up. He basically says what i just said, verbatim. "Our findings are that immune diseases are caused by toxicity, the infections are secondary".http://www.klinghardtacademy.com/images/stories/audio_files/heavy_metal_toxicity.mp3%5b/url%5d
Only 15-20% of those who are bitten develop chronic symptoms. There must be something going on in these people, some other stressors, that allows their systems to break while others heal unscathed. Diet, metals, genetic vulnerabilities and unrelated sickness, emotional trauma that affects you through autonomic priming. I also imagine a probability function that is probably exponentially diminishing over time, where when you're first bittten the probability of being syptomatic is much higher because the signal/disturbance is that much greater, you dont need to be very compromised to become symptomatic. But as time rolls on and the infection is relegated to the background, the probability of being syptomatic is that much lower, because the signal is much smaller, so you need more points of vulnerability/more stressors to make the system blow. Take my case, for example. I was bitten at 17. I felt off before that. Didnt get really really sick until 31. At that point I probably had a metals problem and a very minimal residual infection. But I was also super stressed w/ my job. I ate AWFUL, and I mean AWFUL. I partied a lot, wasnt sleeping and was pretty much going through emotional withdrawal. And bam, I got right on sick. My LLMD thinks it was the lyme, and I agree that was a contributing factor. But how can you say the lyme "caused" it 15y later when there was probably 10 things that needed to align to make that happen.
Bottom line, if you cant get better and the system is too weak to heal itself w/ antibiotics alone, figure out where your biggest vulnerablities are and whats the easiest way to make that first incremental step forward.
Post Edited (dcd2103) : 2/12/2020 6:11:57 PM (GMT-7)