low dose herbs herx or not enough? need help

hi,

it sounds like you are doing a lot of things right - but are just super sensitive

a number of people here have reported super sensitivity to herbs ( or other things like supplements and certain foods) so you are not alone

i was also moderately sensitive - not so much to abx - but much more so to herbs - in my case i had to start at around 1/40th of the target dose and work up slowly - benefits only came when i was part way into the dosing - maybe 20% of the way onwards - but always mixed with herx type reactions so a little hard to spot

i generally try out each new her individually - but then once i know i am not going to have any crazy reactions to it - and have some idea of a safe starting dose - then i have no issues combining them into multiple herb formulas and then dosing with that
its not really known what causes these super sensitivities - it seems to be more prevalent in those with Lyme and especially bart

some say they are MCAS reactions - so that could be worth looking into

other LLMD's use low doses of corticosteroids to suppress immune reactions to treatment - to allow abx to be used / tolerated in some cases - eg Dr M the bart guru uses this approach

Hennatattoo, I was in that situation as well - bedridden, incredibly reactive to anything - when I read Neil Nathan's book Toxic. His medical practice is entirely those very difficult, sensitive patients, and despite having seen a half-dozen LLMDs and more than 40 other doctors, reading Toxic was the first time I felt like a doctor somewhere understood my condition. Within a month of reading the book, I was up and around, packing up my house and moving to a new city. The transformation might not be as dramatic for others as it was for me, but if you have not read Toxic, then I highly recommend doing so. What turned things around for me were treating MCAS (in my case with quercetin, curcumin, a low-histamine diet, and avoiding triggers) combined with DNRS limbic system retraining.

Getting your body's reactivity under control is probably necessary before you can move forward with any type of antimicrobial treatment.

Some antihistamines and mast cell stabilizers do nothing at all for me (e.g. loratadine, nettles, vitamin C, Pepsid, etc.) and others help a lot (e.g. quercetin, curcumin, cromolyn sodium) and there are many I have not tried yet. It seems that everyone responds differently to individual mast cell stabilizers, so just trying one (or two or three) is not an especially surefire way to judge whether MCAS is "driving the bus" or not. For me, the easiest way to tell was by exposing myself to triggers and/or eliminating triggers and noticing the major symptom differences. (Fermented foods, stress, hot showers, exertion, and antimicrobial treatment caused very clear MCAS responses for me. Avoiding those things made a huge difference.)

I had stopped trying to treat tick-borne infections with ingested treatments for more than a year before I began MCAS treatment and DNRS. My baseline was so low that making myself worse by taking antimicrobials didn't feel safe. I had the same worry you express - that I was losing valuable time and letting the infections proliferate by not using antimicrobial treatment - so I hear you that that is a real concern!

For me (and I really am just speaking for myself here, not suggesting that you or others should do or think similarly), once MCAS was under control and I had committed to DNRS 24/7 for a while, nearly all the symptoms I had attributed to active infections were gone, and most have stayed gone. Being at 85% reliably is good enough for me, honestly, though I'm always tweaking things here and there to gain a little more improvement. Do I have active infections still, or dormant microbes waiting opportunistically to swoop in when my system is weakened? Maybe. Did I deal with my infections effectively in my years of antimicrobial treatment (mostly Byron White and Buhner) and just needed to correct extensive residual damage? Maybe. As far as I know, there's not a way to tell for sure. This is why some people don't treat tick bites and recover fine, and others mainline antibiotics for years (even decades) and are still disablingly sick, and every LLMD has a different opinion about the ideal treatment for a patient: it's really difficult to tell with certainty what's going on.

So I don't know if you will be helped by my strategy, but at the very least, maybe the Neil Nathan book can give you some ideas about why you are so hyper-reactive, and help you find a path forward. I know is so scary to try new things when new things tend to be destabilizing, but keep going, slowly, until you find the thing you can tolerate.

I don't mind questions! I know people are so different, but it can be interesting, at the very least, to read about people's experiences.

My MCAS reactions were not the stereotypical rash + respiratory stuff. A doctor diagnosed me with dermatographia, but honestly I don't think he was right, and I never had any other skin symptoms except for facial flushing in very hot weather. No respiratory symptoms at all. My most pronounced MCAS symptom was brain fog. I would get the feeling like I was going to have diarrhea (and then usually not have diarrhea). I would feel anxiety and irritability, and body temperature fluctuations (sometimes real, sometimes just the sensations). I had peripheral neuropathy - mainly prickling, burning, and tingling in the nerves of my hands and feet, but also sometimes on my upper lip and eyelids. Other sensations included phantom stings, tickling pain in my tooth roots, sore throats, fatigue, headaches, dysautonomia (mainly POTS), and dizziness. The dizziness sometimes was vertigo, sometimes a sense that my proprioception was off, balance issues, or mal de debarquement syndrome (a constant swaying sensation). Basically my system went haywire, and most of the symptoms were neurological.

My baseline did not decline when I was not taking antimicrobials. They always made me feel worse. Perhaps my antimicrobial treatment was helpful, and I just felt bad during it because of herxing and MCAS, but I always felt better off antimicrobials. I was about 40-50% functional as long as I didn't try to do much physically, and could push myself hard enough to do one social event or outing per week as long as I gave myself days to recover afterward. (I am a homeschooling parent, so I have a lot of flexibility.) On antimicrobials, I was still around 40% functional, but rather than my baseline of headachy and feeble with occasional weirdness and monstrous periods, I would experience all that plus more neurological symptoms, digestive symptoms, brain fog, and anxiety. I was always on very low doses of herbs, it's worth noting, but my LLMDs always said that if you are treating enough to herx, then your treatment is strong enough to made a difference.

After being off antimicrobials for around a year, I did take a severe nosedive following a simple cold-like virus my child gave to me in late 2018, which exacerbated MCAS and dysautonomia, and caused a disabling post-viral syndrome (like long-COVID but before COVID was a thing). I was bedridden from POTS and viral myositis for five months, developed gastroparesis and laryngopharyngeal reflux, and ended up admitted to the hospital with kidney pain, swollen connective tissues around my liver (weird), and a heart rate of 155 even when lying down. (PSA: Viruses are no joke.) It was from that state that I began to treat MCAS and do DNRS.