Abx question

I'm so sorry, Huddie! I know how incredibly miserable it is to be knocked back down, and to have it interfere with something important to you.

I say take the antibiotics. I also avoid them as much as humanly possible, but a UTI that has reached your kidneys can be dangerous. Herxing is awful, but kidney damage is worse. And the herx will pass eventually.

I'm curious why doctors made you see so many different physicians before diagnosing the UTI and prescribing meds. Any idea?

MCAS is common with long COVID and with tick-borne disease, and can present with UTI-like pain and some of the other things you describe, but that would not elevate your E. coli counts, so I assume the UTI diagnosis is correct.

A few weeks ago I had a UTI.
(Running to the bathroom and a bit of burning.)
The pharmacist gave me some macrobid. She said if I finished the bottle and still had symptoms - that i would need more.
I was fine symptoms gone.
….and a few days later our family went to Hawaii for our son’s wedding.
The symptoms started up again.
In Hawaii - I was able to get some meds off the shelf (no prescription needed) and took them.
I can’t recall the names.

If you don’t want to take meds - you could order capsules of cranberry.
It may help.

Edited: I see you have the cranberry capsules

Girlie!!!

Whilst happy to be reading anything from you again, and so sorry you had a UTI on holiday. A big smile came across my face re: Your son's (I won't write his name) wedding!!!!!! So happy for you all. Wow, life can change in a year or so. That is great news. Sorry you had a UTI during it -ick. I take D-mannose everyday. This is stubborn bacteria and apparently fairly common for as women age. It's partially my fault it is at this stage. When each doctor didn't want to prescribe I was happy with that response.

Thank you for responding, it's nice to 'see you' again and congrats!!!!

nope - for me the herxes were mild - compared to say - some of the more powerful herbs or essential oils or biofilm agents like Xylitol or fibrin agents like Lumbrokinase - which all hit me very hard

i am still in treatment - tried abx originally - stopped when liver enzymes went high and i was concerned about liver damage - switched to herbs - had only partial success with them after several years of trying continuously expanding the herbal protocol - I plateaued - added abx on a pulsed basis - and made further progress each time.

i am about 70% recovered on the good days now - still not completely out of the woods - but life is better - and it seems i am on the right track

its been something of a winding road -
i was initially unable to access abx - as my doctors were denying lyme or anything associated - being dogmatically fixed on "CFS" - then when i did get abx it was years later, while they helped me recover to around 50% asfter 6+ months - i slipped back to maybe 30% after i stopped due to the concerns about my liver enzymes ( i later found this is common with bart infections and typically resolves if you continue treating - Ref Dr M)

during this time i was reading extensively - in particular a lot around gut health and functional medicine - and these people write so much about how essential the gut microbiome is and how bad antibiotics are that i was put off from doing antibiotics for several years - i now feel this was misguided - as everyone with lyme already has a disrupted gut microbiome - and antibiotics are not such a bad thing if the gut is already disrupted - so there is little to lose - and the microbiome can in any case be rebuilt afterwards.
so, i think the misguided belief cost me a couple or more years of delay in my recovery. my gut is no worse after antibiotics (if anything it is somewhat better) and while they are not a guaranteed cure all by themselves - or need to be used wisely in combinations with other adjuncts and supportive therapies - they are undoubtedly one of the better evidence based tools available to us.
in my case i had tried many more natural alternatives without success - so it was the logical next step - and one i wish i had come to sooner.

steering the ship through this maze of conflicting opinions is indeed a very difficult endeavour.

i am continually amazed at how many things i have to do concurrently to keep moving forward.
-lifestyle stuff like: a strict regime of diet, exercise, sleep, stress management
-herbs, supplements, etc
-antibiotics - 3 or more in combination
-biofilm agents
-medications for things like thyroid issues
if anyone had told me this is what was needed in reality in my first years of illness - i would not have seen it as credible...

i am fortunate enough to be blessed with the necessary determination to stick to this rigorous routine over the months and years necessary to make progress - and to be able to support myself financially while i go through this.

anyway - i hope the reflections are of some use to you

all the best

Huddie, I would have felt the same way when doctors didn't want to prescribe!

Huddie said...
Girlie!!!

Whilst happy to be reading anything from you again, and so sorry you had a UTI on holiday. A big smile came across my face re: Your son's (I won't write his name) wedding!!!!!! So happy for you all. Wow, life can change in a year or so. That is great news. Sorry you had a UTI during it -ick. I take D-mannose everyday. This is stubborn bacteria and apparently fairly common for as women age. It's partially my fault it is at this stage. When each doctor didn't want to prescribe I was happy with that response.

Thank you for responding, it's nice to 'see you' again and congrats!!!!

The wedding was beautiful!
Our son and fiancé read their vows to each other.
OMG - not a dry eye in the (was going to say “room”) but it was out side at the Kualoa Ranch

They hadn’t seen each others vows until the wedding ceremony. So beautiful.

Girlie,

Your growing family makes me so happy. We've all come a long way.

Love that you got to Hawaii and got to witness a heart moving ceremony surrounded by such love and natural beauty. I would venture that's very healing!

i know what you mean Huddie - hard to face things we know are going to make us feel worse

the way i look at it is - i will do whatever it takes to get my quality of life back - so that even if i don't manage it - i know it will not be for lack of trying - this gives me some additional clarity of purpose and motivation and helps me deal with the rough with the smooth.

by the way - i meant to mention - in one of your posts you worry about antibiotics somehow "waking lyme up again"
for what's its worth - i don't think that's something that happens - or at least i have never seen any reliable references for it happening.

of course - anyone with lyme who takes antibiotics - or any other antimicrobial - can expect herx type reactions and to feel worse for some period of time - but this is not due to making the underlying disease worse - or increasing the amount of infection - so although it can feel like you have somehow made the disease worse - in fact its just increasing symptoms temporarily while your immune system mops up dead and damaged microbes and their waste products.

if the UTI is recurrent - or comes back - i discovered recently that recurrent UTI's are now demonstrated to be another biofilm forming infection - and this is why they often re-occur in some people - so i wanted to pass on that it might be worthwhile adding some biofilm busting agents to your abx if you have this issue.

there are not many studies on antibiofilm agents taken orally in humans - because these are expensive studies to do and there is no money in them - as they are mostly unpatented natural substances - but there was a study in ear infections in school children ( another biofilm forming infection - hence the reoccurrence) that showed a 50% reduction in recurrent ear infections in the group that was given xylitol gum
E.coli are responsible for 90% of UTI's. and E.Coli is known to metabolise simple sugars and polyols - so there is a good chance Xylitol would work as an anti-biofilm agent for E.coli - as its a polyol.
there are in-vitro lab studies that support this being the case - where they demonstrated it interfered with E.coli's ability to adhere to surfaces ( exactly what you want)

anyway - i pass it on in case its of some help

go easy with it initially until you know how you react

all the best

The names are:

AZO - Urinary Tract Defence

AZO - Urinary Pain Relief

Maybe you can add them to your regime.