A few things which seem to be helping .....

Garzie are you doing anything in terms of probiotics?

I remember you said something about eating certain foods.

I'm low on good bacteria at the moment and find relief in probiotic pills which I keep in the fridge.

However, they are pretty expensive and was looking for something more potent. I know I shouldn't overdo probiotics with bartonella but my stomach isn't that sensitive so I'm just curious what could be more affordable and more potent.

Thank you so much.

Thank you a lot Garzie!
Yes what you're saying makes a lot of sense, to fix the garden first.
I'm not even sure why my stomach can tolerate so much when I have raging bartonella, but I guess it can.
I did notice that I can't eat as much spicy food as I used to earlier in life, but that's about it.

>> "mainly home made sauerkraut - occasionally lacto fermented beetroot or other vegetables"

This is great, I'm going to try some of these.

> if the cost is an issue you can also try brewing the mat home in milk or a milk substitute - this can make one capsule produce a pint or more of probiotic yogurt type drink

No way!! This is great and thank you for the link.
Definitely going to try this, might take some pictures too haha!

haha my mind immediately went to coconut milk too, that's funny.
yes for me it's just about the probiotics, doesn't have to taste like classic yogurt.
I don't think I've ever had goat milk, but now I might have to give it a try.
And yes, will definitely provide pictures 🙂

hey Rainy - I'm doing pretty good actually - the last week since the update i have mainly stuck to everything in my regime as described in this thread and my signature
stuck with the same dose of bromelain now for over 3 weeks and things were stable and gradually improving - doing my best workouts and walking to date - and back to almost my best overall
( just a fraction off due to some extra sleep disturbance and fatigue at times from herx like reactions to adding the bromelain to my antimicrobials )

i wanted to try xylitol as it seems a v safe and reliable biofilm agent - so i added just 1g 2x a day - not really expecting it to do anything - but for the next few days i had several nights of much more disturbed sleep and more fatigue and headaches in the day (typical herx like symptoms for me )

bit surprised at this - i seem to be super sensitive to biofilm disrupting agents - even relatively mild ones and not just those targeting fibrin ( fibrinolytics like bromelain ) - but those targeting polysaccharides also ( Xylitol)

my current thinking is the rather high doses of anti-microbial herbs and methylene blue are plenty to do strong killing once the microbes are planktonic ( out of the biofilms) - and all the time i have been on them has effectively mopped up the free microbes quite well - hence my improvement - but when i add biofilm agents - even in small amounts plenty more are released and hence the herx like reactions.

it does seem to be something i can control by carefully adjusting the doses.
so i have stopped xylitol for a few days so i can see if it settles down again as expected - then starts again with the next doses - if so that will make it v clear

so the slowly-slowly-catchy-monkey game of supporting, then killing, then modulating the killing treatments to manage symptoms while continuing all the good lifestyle and diet type stuff continues

looks like for me its just going to be a case of very gradual adjustments - and going at whatever pace my body can manage

haven't moved yet - its a very messy situation - my ex-fiancé is having mental health issues - is fearful and angry and full of blame and resentment and being unreasonable as a result.

i would love to leave ASAP - but i can just walk as all my life savings are tied up in the house. Its incredibly frustrating. may end up in court but is totally unnecessary.

Very very difficult to communicate with her in any rational way. Everything is distorted by blame, anger and resentment - and what she wants to be true - rather than what is actually true.

At the root of it she is preferring to believe i am the cause of all her troubles, so she doesn't have to accept the truth - that she has long standing mental health issues that result in fear, anger and low self esteem that have crashed every relationship she has ever started.
The tragic part is that underneath all of that she is - or at least was - a wonderful person whom I loved dearly and still do.......

i think some of this pre-dated the lyme/bart - but that it has just sent her over the edge

what can you do if someone doesn't want to face their own challenges - and prefers pretending there is nothing wrong ...?


hope you are doing well are on a good track and will also start to see some signs of progress soon
post an update when you can

Post Edited (Garzie) : 1/8/2022 12:40:05 PM (GMT-7)

Hey Garzie,

Sorry about that, yesterday wasn't a good day.

I'm so glad you're doing pretty good and that you are steadily improving.

The workout improving must feel so great, like a real big accomplishment.
I'm so happy to hear that the Bromelain is working for you too!

It's interesting how an increase in treatment, in this case xylitol has an effect on your sleep. That has been my exact experience with treatment too.

At this point my sleep is so bad, it's literally bad in every way possible:

- Night terrors
- Sweat (although this is finally mild)
- Super tense, as in my entire body wakes up sore
- Mattress marks all over my body (likely collagen related)
- Wake up with tons of red marks all over.
- Wake up with headache (just like you)

Honestly, I can't think of any way my sleep could get worse at this point lol.

But it also means something positive, because I had this with disulfiram treatment too, which means that it's working.

It seems like we have a lot in common, the fatigue and being sensitive to biofilm agents for example. If you do ever try lumbrokinase I would advice you to go slow.
I might actually give xylitol a try myself.

I totally understand when you mean with mopping up the free microbes.
That has been my experience too.
For example, I was having some really bad days, and I wanted to try to see what would happen if I temporarily dropped the lumbrokinase and allowed the antibiotics to "catch up" with the free microbes and other garbage, that have been released from the biofilms.
It actually worked, so for me, it seems indeed the same. I think now the trick is to find a balance between the biofilm agents and allowing room for the antibiotics to catch up as I think the lumbrokinase might be working at a faster pace, for a lack of better words. Maybe a better way to word is is that the amount of microbes being released is happening faster than the antibiotics can kill them.

I am so sorry to hear about how your ex-fiance is treating you, that's absolutely horrible.
I know the type of situation you're in because I know a person that behaves just like that.

"and what she wants to be true - rather than what is actually true."

This is so harmful to you because it seems like what she wants to be true, is having someone to blame for all her issues.
Which in this case is you. I'm saying "in this case" because I hope you are careful not to think it's actually your fault.
Meaning that, if it wasn't you, it would be someone else that's to blame.
Which you actually pointed out about her previous relationships.
You honestly can't win with these people.

I mean this in the best way possible, but it's good that you aren't married yet.
I understand you still love her too though, that's not a bad thing. But I hope you don't forget about loving yourself.

I hope that whatever the outcome is, that you find happiness Garzie.

Please keep me posted on everything

Hi WalkingbyFaith,

Thank you for your concern 🙂,

Yes that comment, if I recall correctly, wasn't that long after I had been tested by RealTime Labs.

The mold I was exposed to many years ago definitely affected me at the time. That said, after much trial and error, moving places, research and testing I am pretty sure Bartonella and Lyme are my biggest issues.

In regards to the place I'm living at right now, I have not had it tested. I don't think it's a good investment right now as I don't plan on staying here. I also don't know what it would tell me if it came back positive, as it doesn't always correlate with illness.

I've lived in 5 different places since that moldy apartment and none of them gave me any relief. I've also treated with CSM with no relief, besides maybe that it helps a bit during herxes when taken with antibiotics.

As for the Disulfiram, it actually got me in remission for 3 weeks and then my symptoms came back. I know there is some debate on how much Disulfiram acts on Bartonella. In my experience it definitely kills Bartonella. However, if it's enough, I can't say because it came back but I also stopped to soon.

I prefer not to go back to Disulfiram as the side effects were awful. I honestly don't know how I made it through that Disulfiram period.

Hi Garzie!

Thank you for your reply

"this makes a lot of sense as some bacteria like Bart are known to cause very strong herx like reactions - but do not carry any lipopolysaccharide toxin - the compound that would normally trigger an inflammatory action when bacteria are killed."

This is super interesting to me, actually your entire comment is, but this stood out.

"and instead we can simply take advantage of the fact that the organisms are slow to grow - so we can take our time breaking them down gradually - or take breaks eg a few days or a week off to let symptoms settle to manageable is no problem"

Wow you read my mind, because I was going to make a thread asking about this. So just to clarify, it's ok to take, let's say, a day off from antibiotics with Bartonella? That was what I was going to make a thread about to ask. I feel lately like my body is saying "not today", if that makes sense.

Yes epsom salt doesn't do much for me either, but they are nice aren't they? I miss them now that I don't have a bath. I know tudca gets mentioned a lot on this forum, that does help me. Although I agree, it's so difficult to alleviate these type of reactions. The only other thing that helps me is high doses of Quercetin with Boswellia. I think the high dose is needed for Quercetin, I was reading it might be due to absorption, it's my experience too.

Thank you for listing what helps your sleep. I'm going to remember those things. I will be the first to admit I don't do enough to fix my sleep. Mostly due to the fact that I sleep so much that it feels like no matter how perfect I sleep it's not enough. However, I do notice that when I do the right things in terms of sleep it helps a bit, it's just that it's been a bit discouraging. Do you ever notice strange heart symptoms before falling asleep? I can't really describe it, it's like you feel something off with your heart when dosing off, but then you wake up fine.

Thank you for the dosage of xylitol, I will remember to do 2 grams or less at first!

Silly question: how do I do a capillary refill test?

Thank you for your kind words about hanging in there, I will do my best and the same goes for you!

Never heard before about quercetin and poor absorbability, but it's one of my favorite supplements.
“Quercetin is not soluble in water, however, so it is a poorly absorbed nutrient. Bromelain, a protein-digesting enzyme extracted from pineapples, increases the absorption of quercetin, as does vitamin C. Therefore quercetin is typically sold blended with one or both additives.”

I guess that’s why one of my quercetin supplements comes with bromelain.

Thank you Garzie!
That's reassuring to hear you have the heart issues too although I wish you didn't have them of course. The examples you gave match mine.
That's so great to hear you're back to baseline and thank you for the link to how to test. I will be trying it

That's a good idea deep_sleep to take it with vitamin C, will be trying that myself too

Hi Rainy - sure happy to share my experiences

overall though it should be said that the thyroid hormone system seems to be very complex - and I am not convinced anyone has fully figured its intricacies out yet. least of all the conventional Endocrinologists who seem to be stuck in another debacle of opposing paradigms - eg just take T4 - and if you still have symptoms its not your thyroid.

i have found most thyroid support forums to be little better - stuck in dogma and angry at people who question it for example when other peoples experiences do not line up with the received wisdom they believe in.

i did a lot of reading around the subject and had a hard time finding my way through the conflicting information that is out there.

you could easily write a book on the topic and still only capture a fraction of the information out there - so i will try to give the highlights i think are most useful.

overall my conclusion is that the thyroid gland is just one of the most sensitive tissues in the body to auto-immunity and acts as the canary in the coal mine that reacts first when problems arise.
I now believe that bartonella caused my hashimoto's, along with environmental factors like chronic stress and sleep deprivation, by triggering inflammation and dysregulating the immune system.

i read several scientific peer reviewed papers that demonstrated is simply not possible to get the same tissue levels of T3 in all organs - and especially in the brain by supplementing with exogenous T4 alone - no matter how good your conversion is.
in addition all cells in our bodies including immune cells are governed by thyroid hormones - and optimum immune function is just not possible without optimum level sof thyroid hormones - top LLMD's like Horowtz underline thsi by saying many of thier patients simply will not get better untill thier thyroid hormones have been properly corrected - by which he does not mean just T4
so to me this was enough to discredit the majority of endocrinologists and set me on a path to find what would work best for me.

for this reason i opted to try supplementing with combination T4 and T3 - with a goal of getting the thyroid hormones in the following ranges
-T4 in the upper half of normal range
- free T3 in the upper 1/3rd of normal range
-TSH below 2 - ideally a little below 1
- Reverse T3 / T3 ratio in the "ideal range" acc to functional thyroid docs - will have to check what that is.
i would be happy to use natural desiccated thyroid products also - but availability and quality both seem to be an issue making this complicated

conversion of T4 to T3 is the next most important thing to understand - and this is key in chronic illness as its dramatically impacted by gut health and chronic inflammation - two things that are often concomitant with hashimoto's and so have a tendency to cause a negative feedback loop.

in a simplified model of what is going on, inflammation drives the conversion rate of T4 to T3 down and turns the conversion rate of T4 to reverse T3 up - so the more inflammation you have the less well you will make T3 and the less well the T3 you do make will work in the cells as its getting blocked by RT3 and inflammation effects. There is likely more to it - but the above serves well enough for our purposes.

the next thing to understand is that the body uses T4 as a kind of long term storage molecule ( and then converts it to T3 as needed based on feedback loops ) so levels build up gradually over weeks after changing dose - whereas T3 is short acting - and levels fluctuate on a daily rhythm.

i had been taking T4 ( levothyroxine sodium) for several years - only found out about i had hashimoto's after getting sick with lyme - but turns out records showed high TSH even 5 years before i became ill and doctors had missed it - and although i had occasional fatigue - i was still able to qok 16hrs days then at the weekend drive 4hrs mountain bike in the mountains for 4 hrs and drive 4hrs back - so somehow it wasnt effecting me very much.
when i did start T4 i it didnt seem to help my symptoms at all - but i stauck at it for several years before opting to add T3

i did so gradually - stepping up in small steps of T3 ( i use Tiromel brand 25mcg ) - eg from 12.5mcg - to 18mcg and making small changes to T4 that i hoped / calculated might balance - and then waiting 6 weeks and testing to see where i was - it took a while - maybe 6montsh to zero in on what would get my hormone levels into the ideal range or as close as poss.

for me this works out at 100mcg of Levothyroxine sodium and 37.5mcg of LIOTHYRONINE SODIUM and i have stuck with it since
my T3 is still a fraction below where i would like it - but is just on the line of the upper third of range
my T4 is at the upper end of normal range and my TSH varies from between 0.5 and 2 depending
all it seems on what is going on with treatment - eg inflammation or drugs herbs that speed up excretion via the liver pathways
it has not made a huge impact to my overall energy in the short term - but i believe that is because thyroid was not the primary reason for my fatigue ( hence able to mountain bike despite high TSH prior to lyme) but lyme and bart was - so the goal here was to help my normalise my thyroid levels so that my immune system could better fight the infections over time.

i do believe this has helped as my slow climb back started at some point around the time i addressed this - along with Keto diet, focus on sleep, exercise, herbs etc

so for me i see it as taking one more nail out of the foot so to speak - but just one of many - a la Horowitz metaphor

hope its helpful

let me know if you have questions as i am happy to help

happy to help Rainy

in case its of help
the Tiromel i use is very affordable - i get it from buy-pharma.md or alldaychemist.
- and my PCP prescribes the levo

also you have to give time for everything to settle before taking blood tests and learning the outcome - 6 weeks typically - as even though T3 is fast acting - if affects TSH production - which effects T4 so they are interconnected.

quite a high percentage - maybe 50% or more people say they feel better on T3+T4 vs T4 only so its a v common thing - as far as i could tell i have little or no benefit from T4 only

let me know how you get on or if you have questions