Lyme/Bartonella/Mycotoxin Patient with Unrelenting Pelvic Pain and Vertigo

Hello all,

Long time lurker, first time poster here. I'm a man in my early 40s from New England who has been dealing with some iteration of lyme/bartonella/mold for at least a decade, and dealing with it more acutely for the past year. I thought I would share my situation with others in case they had any input to offer. I'm currently seeing a LLMD and have seen improvement but am still suffering from terrible nighttime pelvic pain around the pudendal nerve area that flares badly at night. My bloodwork was positive for mycotoxin poisoning, lyme (igenex test), and two strains of bartonella. Current meds include doxy and azithromyacin (seven months), rifampin (second month), many herbs and binders for the mycotoxins (which I have suspended for the moment).

My brief history: about ten years ago in my early 30s my health took a general turn for the worse and I started having terrible pelvic pain, mostly at night, as well as muscle spasms and persistent lower back pain/sciatica. It was during a time when I was exposed to mold at work, and also had tick bites, so it's very hard to know what was causing this but I'm fairly sure it was systemic. I started waking up several times at night with painful erections, which would subside a little bit with urination. My urological tests were normal, and I refused the urologists offer of opioids and got the pain about 80% better with acupuncture, meditation, yoga, cbd, etc, though it would still wake me at night maybe once or twice, but I would have a four or five hour stretch of sleep and life was generally manageable. I had a lot of tension in my body due to poor posture and low flexibility, and making improvements in these areas helped considerably with the pain.

Last year I had another tick bite in April and was refused doxy by my PCP. Three months later I started having vertigo spells. After that I got neurological pain in my leg, then my back went out, then I started having night sweats, neck aches, horrible migratory pain in my lower body, horrible brain fog, etc. After much confusion with doctors I found my way to a LLMD in March and began treatment for Lyme and Bartonellosis. Symptoms have improved by about 75% or so - fatigue and brain fog are much better, the back and neck pain have mostly gone away, and I generally feel much more energetic. Two months ago my doctor suspected that mold might be an issue, and my tests at Realtime showed very high levels, several orders above what's considered a positive result. I still have a general out of it feeling, suggesting that something's going on with my vestibular nerve, which hasn't improved much with the treatment. It sometimes flares to include a sound-induced vertigo and a very heightened out-of-it feeling. The pelvic pain has worsened as well, particularly in the last month or two, roughly coinciding with the rifampin, biofilm disruptors and also the binders but not correlating perfectly. I'm trying to figure out why this is, and there are all sorts of plausible reasons, and also try to figure out how to relieve the situation, as I'm currently only able to sleep a few hours a night. Part of the problem is that life stress aggravates the pain for whatever reason - some sort of mind/body feedback loop, I think, which has been there for at least a decade.

I started binders for the mold and had to suspend them because it increased my fatigue and brain fog. I'm guessing my doc will resume them again soon in small amounts.

At this point, seven months into my treatment, I'm trying to figure out how to manage the nighttime pelvic pain so that I can sleep and give my body a better chance of recovering. There are so many variables with the multiple medications and three diagnoses with overlapping symptoms that it's very hard to know what's what. I'm going to try FSM therapy to see if that helps. I've tried craniosacral therapy, which helps a little bit with the vestibular symptoms, and acupuncture, which is sort of hit or miss. I take lots of epsom salt baths and have a low intensity PEMF mat that I use. Through all of this I have kept up an exercise regimen of riding my bike for several hours a week at a fairly high level, which has helped both with my mental and physical health, and I have noticed a lower energy level on days I can't exercise.

I have educated myself as best I can through any research I can find online, and also recently read Neil Nathan's Toxic: Heal Your Body, which seemed to describe my patient profile fairly accurately. My labs show normal kidney/liver function and a slightly low white blood cell count. I basically trust my doctor and feel lucky in that regard, but the remote nature of our appointments and the focus on systemic treatments makes it necessary for me to take my own initiative for bodywork and symptom-specific therapies.

Any advice from the collective wisdom on acute treatments for the vertigo or pelvic pain would be greatly appreciated, or any other relevant observations or feedback on my situation are of course welcome. I also wanted to post in case someone searching for "painful nighttime erections," as I did for several years with no luck in the urological literature found this and connected the dots with mycotoxins and tick-borne illness.

Thanks everyone!

VT1578,

Hello and welcome! I am so sorry for your suffering. I don’t recall reading about painful erections and pelvic pain as you described, but it could certainly be related.

I assume you have been tested for all sorts of sexually transmitted diseases and nothing was found. If not, that would be wise to do. Were you tested for other infections like mycoplasma and chlamydia pneumonia?

I am female and also have mold/mycotoxins. After moving into a house that was remediated for mold, I started having UTI symptoms but had repeated negative cultures and normal urinalyses. At first, I found Cystistatin which contains uva ursi to be the most helpful treatment after 2 antibiotics failed to eliminate symptoms.

Later, I began to suspect I was dealing with increasing MCAS symptoms. I started taking Zyrtec (1/2 tab in am and 1/2 tab in pm). The UTI symptoms went away after I continued taking the Zyrtec consistently.

Bartonella and mold both are known to trigger MCAS. Different treatments work for different people. Some find a low histamine diet helpful.

If you haven’t tried antihistamines, you could try Zyrtec the way I did or taking a whole tablet at night only since your pelvic symptoms are worse at night. I had already been taking Xyzal at night, but it had no effect on my UTI symptoms. Zyrtec did.

BTW, that you got 75% improvement with antibiotics is amazing. To get that much improvement when you have mycotoxins is pretty phenomenal, IMO.

What mycotoxin binders were you taking that you stopped due to increased symptoms?

Have you done any kind of testing on your home and current workplace to make sure you don’t have current exposure to mold?

Have you used a sauna? If not, that might be a better way to remove the mold toxins if the binders are too much. Some people do use binders like charcoal and chlorella before or after getting in a sauna.

Post Edited (WalkingbyFaith) : 10/1/2021 9:35:40 AM (GMT-6)

WalkingbyFaith,

Thank you for the reply. I was taking bentonite clay and activated charcoal as binders. The 75% improvement with antibiotics was mostly for my brain fog/fatigue/migratory pain symptoms, which I think must have been purely Lyme-related. It's so hard to delineate, but I'm definitely much better than I was over the winter, when I could barely form sentences and couldn't take care of my children. I had this hyperacusis thing happening where I couldn't load the dishwasher or be around other people. The vestibular and urinary symptoms haven't improved as much, which makes me suspect that they're mold related. Or, as you mentioned, that they're MCAS related, and that my body is generally dealing with some sort of general heightened cytokene/immune response/overload. Neil Nathan's book was very helpful in helping me understand all this stuff.

Thanks a lot for the recommendation of Zyrtec, I will definitely look into it. I was thinking of asking my doc about the possibility of some sort of anticonvulsory just to get my sleep in order, as I feel like if I could just sleep my body could heal much quicker. Right now I feel like I'm in a feedback loop of sleep deprivation and pain patterns, which can be hard to break. Historically when I get into these bad spirals I've had the best luck with a combination of cbd/cannabis and mental aerobics to try to elevate and pretend that I'm OK to break the stress cycle, which is easier said than done, but usually works eventually.

I'm nearly certain the mold was occupational from my old job at a used record store, but I am doing more testing now, both at work and at home, so in that regard I'm hopeful I can heal with minor life disruptions.

I haven't tried a sauna yet, but plan to if I can. I ride my bike pretty intensely which involves a lot of sweating, so perhaps that's helpful as well.

Thank you again!

Post Edited (VT1578) : 10/1/2021 9:53:38 AM (GMT-6)

Saraeli,

Thank you for the reply and the input. My best guess is MCAS as well, perhaps in combination with some musculoskeletal factors, and now exacerbated by a feedback loop. I've thought about the cycling angle for sure, though it doesn't add up perfectly, as the worst of my pelvic pain happened a decade ago when I wasn't cycling (though I was doing some other activities, like lifting boxes at work, that could have irritated the nerve elsewhere). Also the onset pattern doesn't quite fit a traditional pudendal neuralgia pattern, as the pain generally doesn't bother me during the day, and also doesn't bother me in long car rides or other times when I've been sitting for a while. I had a PT do a lot of tests on me for correct fitting of my saddle, though that all goes out the window if I don't focus on anchoring my sit bones far back in the saddle while riding. Last year before I had the vertigo and lyme symptoms, I was cycling much more (7-8 hrs a week as opposed to the 4-5 I do now) and had no noticeable change in pelvic pain symptoms. I also can't find any spot on the nerve that's sensitive to touch, which I'm guessing would be there with some sort of pudendal nerve damage?

When it started ten years ago, the muscles and joints (SI, etc) around my pelvic floor were much tighter. Dealing with the musculoskeletal parts through PT, acupuncture, etc., knocked the pain down considerably, though it still came back at night. I still do regular yoga, stretching, etc. to keep that part in check. I guess it feels like I'm in a chicken or the egg scenario, where I don't know if the muscles are tight because there's pain, or vice versa. My posture wasn't that bad and it seems like an extreme symptom set.

The thing that keeps throwing me off is the nighttime onset pattern. One theory I have is that during the REM sleep cycle when men normally get nighttime erections I'm getting some sort of stretching of the pudendal nerve that's causing the pain due to some sort of compression/scar tissue or lack of glide somewhere. I've thought about taking REM inhibitors but that seems pretty extreme and I don't know who would prescribe them or take this theory seriously. Another theory I have on the nighttime onset is that it could be related to my digestion somehow, perhaps a leaky gut issue in my lower digestive tract that's inflaming my pudendal nerve somehow.

At this point I'm trying to decide if it's worth it to re-enter the conventional medicine machine to see a pudendal nerve specialist in case there is some sort of scar tissue or other acute issue that I'm missing (possibly farther up the nerve, maybe near my hip/SI joint), or if I should wait it out with the mold detox. Generally when I've gone down the path of traditional urologists/neurologists, etc., the cycle of misdiagnoses and frustration has invariably led to stress-based flares of my pain, and/or resolved with the prescription of opioids/benzos/etc which I don't want to be on long-term.

And thank you for the recommendations of craniosacral therapy, I'm going to try to integrate that into my routine, as well as the mast cell stabilizer suggestion. I'm currently taking histaquel and loratadine but may talk to my doc about adding Pepcid or something similar into the mix.

And it sounds like you've had the unfortunate experience of hyperacusis and kids as well - I'm so sorry! Yes, that part of it was the worst.

Thank you again!

VR1578,

Glad to hear you have achieved positive results. Praying you completely recover from this mess.