What the heck am I battling

Eyes and bladder could be from bartonella. Did you test for coinfections? Ever have unexplained scratches, lines, or stretch marks appear on your body? Sore soles on feet?

serology for bartonella has been shown to be highly unreliable - so standard IgG IgM tests probably catch less than 25%
your looked for 2 species - which may have increased its potential sensitivity slightly - but probably not enough to make it reliable

the UK NHS has removed this type of test from use - and not replaced it with anything as yet. when mainstream institutions backtrack like this you know its really a drastic issue

so i don't think that test can be used to rule it out

the Babesia PCR test might fare a little better in terms of sensitivity - but more recent studies seem to be identifying a new species as the major culprit for babesia infections in the USA ( Babesia Odecoilei ) - and if this test used specific primers for Divergens, Microti and duncani -rather than a shotgun sequencing approach that would detect all species in the genus Babesia - then it may not have caught B. Odecoilei
the lab may be able to confirm or deny this - which could help with your deliberations

galaxy diagnostic has the best testing available for bartonella at the moment -
(3x draw+culture +DDePCR)
and
T-Labs has specialised tests looking for Babesia Odecoilei via FISH test

with a positive lyme test - especially via Spinal fluid - you can be sure you have been exposed to tick born infection/s - so the co infections are a very real consideration.

my personal feeling - in the absence of further testing - is that after 9 months of trying to target babesia without progress - i think it time to adjust course and consider bartonella as the primary target alongside Lyme

bart and babesia symptoms can often overlap - and not everyone with babesia has the drenching night sweats is most known for or "air hunger" - so in the absence of these features the remaining symptoms overlap considerably - fatigue, brain fog, headaches, palpitations, circulation issues, digestive issues
bartonella often has more mood, mental health, anxiety, depression, anger, psychosis type manifestations
and often more generalised pain of various sorts - general musculoskeletal / rheumatic presentations
food sensitivities, MCAS type reactions, digestive issues also seem to be more prevalent also in bart
but these are all general leanings in emphasis that you might see if comparing many patients with each condition - rather than hard and fast rules for any one individual
the sor feet thing sounds very bart like
some LLMDs have stated any internal buzzing or vibrating sensations is a very clear bartonella sign

aside from ticks - flea bites, from fleas off cats, dogs or rodents - or cat scratches or cat or dog bites are the other common forms of transmission of bartonella. so if you have owned these animals in teh past - it would raise my index of suspicion for bartonella -
something like 50% of cats that go outside carry bartonella strains or are sero positive for bartonella in multiple studies - so its exceedingly common - even in developed countries

Garzie, I really appreciate your feedback. A couple of other notes, I will be starting oil of oregano shortly - will that address possible bartonella? Also interesting is my very hard herxes from Artemisinin - been the toughest herbal I've tried yet. I'm just about at full dose but boy does it hurt.

Awhile back I was given Diflucan for thrush - I will say that hit just as hard as the Artemisinin - and flared the bladder symptoms horribly. Not sure what that means as well. As for the Allicin - I'm on week two and haven't noticed much effect from that - so that product could indeed be ineffective.

Zhang at johns hopkins published compelling evidence that oil of oregano is powerful against bartonella - ( and also Lyme and Babesia i believe )

doses of 100-200mg a day are typically used

i also found it potent

artemisinin may well be active for bartonella - i have not seen good data - but there are reasons to believe that it should be.

i have seen good papers showing it is active for lyme - especially lyme persister cells and particularly when combined with other antimicrobials - so powerful reactions to it could be from a number of things and not isolated to babesia ( in general its not thought to be particularly effective for many species of Babesia - studies show Babesia is generally far less susceptible to it than malaria - from where its use is extrapolated )
it is best pulsed in any case - as the liver ramps up excretion rates after a few days - and blood levels are low after 1 week of continuous dosing

Quin and i are discussing Diflucan / fluconazole on anther thread - i believe there is reason to think it may be highly active for bartonella - due to other similar azole drugs being tested in an FDA drugs screen by Zhang and his team - where 5 of the top 10 most potent drugs tested against bartonella stationary phase cultures were azoles - but fluconazole was not listed amongst them.

I really appreciate the feedback everyone. The artemisinin definitely packs a punch. I just finished my three day stretch and will begin another three day stretch in one week's time. I do pulse that. I do have LDN at my disposal as well, I tried it one evening and was up all night. Not sure if I will start taking that in the morning or not.

Another factor was that I used Methylene blue for a couple of months - and noticed no affect herx or otherwise from that. Sometimes I feel like we through everything including the kitchen sink at this, seeing what will stick. I have made progress over the last eight months however, but can't get across the goal line. I don't look forward to starting the oil of oregano as I am quite concerned that will cause significant herx as well. But here we go I guess..

The most frustrating thing is not knowing what exactly you are fighting, although I do know borrelia is a main player in my case.

just to add - i think trying various approaches ad keeping what works well for you - and then finding other things you can add to it - is a viable way forward
for me it was first some anti-inflammatory herbs, then adding the keto diet, then focussing on improving my sleep quality, then some regular exercise, then co-infection herbs etc etc

this is what has helped me - rather than changing tack every few weeks - i have built up my approach step by step - keeping things that helped me - discarding those i feel did not
this incremental approach has got me to around 60% recovered and i am still improving - so it gives me confidence that i will get there - that i dont think i would have if i was stopping one thing and starting something altogether different each few weeks.

ref methylene blue - i am surprised to hear you feel it didn't do anything for you - for me it was very potent - at least in terms of herx reactions - and i had to step up gradually from around 10mg per day
what dose did you try ?

What about mold? Are you (or were you) living or working in a moldy or water damaged building?

Mold and Candida/yeast and bartonella symptoms, in particular, can be very similar. The fact that you herxed strongly on Diflucan and had no noticeable response to Methylene blue makes me think you are sensitized to fungal components, which often happens with mold exposure.

When I started Diflucan and Nystatin, I had die off symptoms. Once I felt better, I realized that some of my foot pain was actually caused by mold/yeast rather than bartonella, which surprised me.

No mold exposure and all this kicked off with the initial lymes infection. Although the bladder symptoms came months later. I was on Methylene Blue 50 mg twice daily - and like I said no herx symptoms from that. I am a male - so endometriosis is probably not a factor as well. Urine samples all clear (multiple times). Urologist said "boy, you really messed up your pelvic floor". I asked what the hell that is and how did I do that lol. PT has done internal work and muscles are indeed tight, as well as external trigger point release. Could be exacerbated by muscle weakness,tightness that I feel in my legs. In fact leg pain and tightness was one of my initial lymes symptoms. Hell, this could all be borrelia related I guess.

Garzie, I will do more research on the LDN - I was hesitant based upon my initial reaction - and the fact that I didn't want to just cover up symptoms. They had me starting on a dose of 1.5 mg I believe.

From my LLMD: LDN or Low Dose Naltrexone. This is an antagonist to opiate or natural narcotic receptors in the brain. There is growing research that this may provide improved immune function, pain management and cognitive function. There is theoretical concern that this might decrease the effectiveness of narcotic pain relievers and potentially increase the effectiveness of thyroid replacement in those specifically with "autoantibodies" causing the underactive thyroid. The mechanism for this is presumably and turning down the tendency for one body to generate these antibodies and thus allowing the thyroid to potentially function more normally. Please let us know if symptoms of overreplacement should occur. This might include an increase in anxiety, palpitations, unexplained weight loss or difficulty with sleep. Dosing is 1.5mg ONE nightly for a week, TWO nightly for a week then THREE nightly. Assuming tolerability, this would then be changed to 4.5mg ONE NIGHTLY. LET ME KNOW if sleep is adversely impacted by this.

I started the oil of oregano today - Gaia Herbs - Amount Per Serving
Oregano leaf supercritical CO2 extract ... 230mg
Carvacrol and Thymol ... 32mg
Will see how that goes, I am preparing for a herx but who knows..

I will go every other day for a week or so for the oil of oregano, just to be careful. I will discuss the LDN with my LLMD provider next week as we meet again. Obvious goal is to get off the antibiotics and stay on herbals for the time being, that being said I think I am a ways away as of yet.

I really appreciate the insight, the battle continues.....

yep - that is the same challenge as many of us have

the herxhiemer reactions / die off / immune aggravating effect - whatever they are - are the limiting factor in how fast you can treat the illness.

in general - the more effective a substance is - the greater the strength of this effect
so in large part its just something we have to get through however we can

in the most part - following your screen names approach is the most workable policy
ie start low and go slow - stepping up at a rate you can tolerate and still function.

for what its worth - i have noticed that the herx like reactions for me are somewhat stronger with natural substances than they are for pharma dugs

i wonder why this might be the case

it could simply be that the screening for pharma drugs typically involves many candidate drugs that are thinned down to the final drug through a series of trials - first in cell cultures - then in animals and finally in humans - so it could be that if during these trials some drug candidates made all the mice lay on their side and look v sick - they would be removed from the trial as having undesirable effects.

pulsing is another option - you still get the herx reactions - but its not continuous - there are some breaks - eg 2 weeks on 1 week of

consider liquid forms so you can adjust the dose from week to week as needed

I never herxed much from cephalosporins. Borrelia has a specific defense mechanism to these types of drugs (eg rocephin) where it goes into a dormant persister state.

If you think pharma drugs won't cause a severe herx, you have not tried depakote+valtrex, or dapsone.