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Posted 8/30/2021 10:10 AM (GMT -5)
Has anybody used Galaxy to test for Bart? I'm especially interested in those who have suspected chronic Bart symptoms? I know they are supposed to be the gold standard. I remember hearing it was expensive, but the PCR triple draw is 1600$!. Due to the cyclical nature of the bacteria I'm guessing this is necessary?

According to Galaxy's bartonella ePCR FAQs page, they say "For newly infected patients, we recommend testing for both DNA and antibody evidence of Bartonella species infection. For patients who have failed treatment or who have recently undergone aggressive antibiotic therapy, direct detection using this platform may not be as helpful."

Does that mean that if you have recently went through abx therapy then the PCR method is not as helpful?

I'm suspicious that Bartonella is my main issue again. Earlier this summer my doctor put me on an aggressive protocol of DSF, Rifabutin, Plaquenil, Clarithromycin, Coartem. This protocol wrecked me. I didn't make it very long. During this time I was experiencing the red marks that often appear when my symptoms intensify. After being taken off abx by Dr's orders I continued with DSF. I added in tincture Crypto a few weeks ago, and have been working up slowly. I added in tincture Hottunyia, and have been working up slowly. After adding Hott, and increasing dosage I got worsening symptoms and red marks again! I hadn't had any of these marks since I was taking the abx regimen. My marks primarily occur on my back around and under my shoulder blades. They also occur on my butt cheeks closer to the butt crack rather than the outer butt. I can try to add pictures of the marks if need be.

Should I get the Galaxy test? 1600$ is a tough pill to swallow, but I'd do it if I was convinced it was worth it.
Posted 8/30/2021 11:05 AM (GMT -5)
“ protocol of DSF, Rifabutin, Plaquenil, Clarithromycin, Coartem. This protocol wrecked me. I didn't make it very long. “

Taking those daily would be very difficult…I can see why you didn’t make it very long.

Not sure if I’d spend the $$ to get a test.
Posted 8/30/2021 11:12 AM (GMT -5)

Girlie said...
“ protocol of DSF, Rifabutin, Plaquenil, Clarithromycin, Coartem. This protocol wrecked me. I didn't make it very long. “

Taking those daily would be very difficult…I can see why you didn’t make it very long.

Not sure if I’d spend the $$ to get a test.

Thanks for your advice! The protocol was pulsed and I didn't take any medication daily other than the DSF, but still, I didn't make it longer than a month.
Posted 8/30/2021 12:04 PM (GMT -5)
I had bartonella symptoms since childhood - tender feet, bone pain, shin pain, striae, stretch marks. The only test I had that covered bartonella was DNA Connexions, and it was not detected in my sample. I never bothered to test with Galaxy due to cost and the possibility of still getting a negative test result.

IMO, the striae and stretch marks are as definitive of bartonella as a bullseye rash is of Lyme. I self-treated with Buhner’s protocols. I had some improvements, but mold and gut dysfunction are my bigger issues these days. Still taking maintenance herbs.
Posted 8/30/2021 12:06 PM (GMT -5)
“ IMO, the striae and stretch marks are as definitive of bartonella as a bullseye rash is of Lyme.“

This ^^^^^
Posted 8/30/2021 12:53 PM (GMT -5)

Girlie said...
“ IMO, the striae and stretch marks are as definitive of bartonella as a bullseye rash is of Lyme.“

This ^^^^^

i agree very much with Girlie and WBF on this - assuming your bart streaks are the typical ones we see referred to as bart striae - the placement/ location of the rash sounds stereotypical also

you can post images here and add a link to them in a post below if you would like a second opinion on whether they are likley bart or not https://imgbb.com/

nothing else is known to cause that - especially repeatedly - and it has been known to occur during abx treatments

i would save yourself 1600usd and self diagnose bart based on that rash and symptoms
Posted 8/30/2021 4:08 PM (GMT -5)
Thanks everybody for the replies. I tend to agree that if it smells like a duck it's probably a duck. I think I have just been through the ringer with this stuff and lose confidence in my assessments. The Bart striae I get is, I think, a little atypical. It doesn't look exactly like the classic striae you see when you google Bart marks. Thanks for the link Garzie. I uploaded a few pics. I uploaded close ups and full back picture for better awareness I'll save you guys the butt pictures and stick to the back lol. These pictures are typical of what happens. 100% of the times these marks appear when symptoms intensify. My experience is either treatment and/or a hard cardio workout worsens symptoms and then the marks appear. For example, as I said earlier, the last two times this has happened over the last couple months was when I started taking abx and when I started Hottunyia. The attached pictures show marks from when I was on a herbal protocol and went for a vigorous 3+ mile jog. Additionally, I've read where many have said their marks never disappear that just oscillate between skin colored and more reddish. My marks come on during intensifying symptoms and then fade away after a few days.

I have been on Bart specific protocols through my doctors before. However, maybe they weren't long enough? They have never been more than 3-4 months I believe. I've done so many years of abx. Are there any other known methods of treating/controlling Bart outside of Abx/Herbs?


https://ibb.co/hmmY8jS

https://ibb.co/mTypwdP

https://ibb.co/KW7pwS6

Post Edited (Lymie24) : 8/30/2021 3:13:56 PM (GMT-6)

Posted 8/30/2021 4:16 PM (GMT -5)
you are right - they are not absolutely stereotypical bart Striae - but we know these rashes are notoriously variable - and the marks you have - in the absence of other obvious causes - and combined with the flare when on abx/herbs strengthens this association - is all highly suggestive

bart is notoriously hard to treat for many people - takes a long time to get results

often causes herx like reactions for weeks or months before real benefit can be felt - and even then progress can be slow - takes patience and perseverance
Posted 9/1/2021 8:55 PM (GMT -5)
@Lymie24 I would say that looks like Bart(onella)...

I have many of your same questions about Bartonella testing,

trying to remember MR webinars where he mentioned Galaxy as testing for "multiple strains"... ePCR™? might be the best available (commercially) testing right now barring academic/private labs...

Like where is the full panel-- like every possible strain, like "the works" type of test????

https://www.galaxydx.com/wp-content/uploads/2018/12/hhtestpricingformmay2019.pdf

here's another link, can't process what is what as far as prices, menu or what the best test would be.. right now thx to lyme brain/bartonella crisis...

https://www.galaxydx.com/wp-content/uploads/2019/06/hhtestpricingform2020.pdf



There is the link..I'm still stumped as to what tests test what.

Post Edited (borrelioburgdorferii) : 9/1/2021 8:30:16 PM (GMT-6)

Posted 9/2/2021 4:59 AM (GMT -5)
as far as i can tell - from their website

the ddPCR is the latest and best method - enrichment by culture then digital droplet PCR - that can detect 16 or more species of bart and has approx. 50% sensitivity and 99% specificity

the ePCR is their PCR with enrichment via culture - i believe - and was the best until the ddPCR came out - same species detection - but lower sensitivity - and also lower cost

either can be performed with a single draw or triple draw ( recommended ) but of course cost will increase per number of draws

they also offer each of these for other tissues than blood - skin, urine etc - and in these cases the run is single and cost lower accordingly

the IFA tests are more conventional serology based technology (immunofluorescence assay) - its based on antibodies and therefore limited in sensitivity due to barts ability to interfere with antibodies especially in chronic cases - it is however another technology - and the strategy for testing for hard to detect organisms is often to use multiple technologies in parallel to increase chances of getting a positive result (its perfectly possible to test negative via ddPCR - as its sensitivity is still only 50% - and positive via IFA) - so it has its place

the test Panels are combinations of the above for this exact reason
Posted 9/2/2021 12:04 PM (GMT -5)
Garzie,

Are you treating as if Bart is the main driver of your illness? If so, how are your treatments going? What are you using? What has been the most or least effective?
Posted 9/2/2021 4:29 PM (GMT -5)
Lymie - its really hard to know

i have a positive test for lyme from Armin labs and many symptoms that fit both lyme and bart - so my treatment is trying to cover mainly lyme and bart

progress is slow but in the right direction the last 18months after aroudn 3 years stuck at appro x 20% of my previous healthy function

my treatment is a complete lifestyle, diet, exercise and behavioural overhaul of my life and a comprehensive mainly herbal protocol based on buhners books- that i have gradually built up slowly over many month's - although i have used ABX in the past i hd only moderate improvements and then had to stop du to raised liver enzymes.
the main things are:
1-Wholefood ketogenic Diet
2-Daily light exercise - walking mainly - plus weights every 3rd day
3-extended protocol of herbs for lyme - per Buhner's second edition "healing Lyme" book
4-selection of co-infection herbs - again per buhner - sida, cryptolepis, alcornea, houtty, teasel, mahonia
5-immune modulation - LDN about 3.2mg per day, and Ivermectin 12mg 1x per week
6-Methylene blue for bart persisters - 130mg / day

hard to say what has helped the most - perhaps the Keto diet was the fastest and most noticeable impact. the buhner herbs seem to help at least as much as abx and have probably moved me forward the most overall but it has been a slow process.

I'm not out of the woods yet - am approx. half way back - but still improving - and in fact as i continue to systematically tune my approach based on what works for me and dropping what doesn't the speed of recovery does also seem to be improving

i am very systematic - it seems to me that this thing is so hard to shake - and no one thing or approach works for everyone - so a person could bounce around trying this and that in an ad-hock manner and never really getting anywhere.
that was certainly what was happening to me - i was stuck. so i got systematic with researching, with trials and measuring outcomes - and changed from short sharp shock type therapies that i just couldn't tolerate - to careful low and slow step by step approach - and i slowly started to move forward.

Post Edited (Garzie) : 9/3/2021 9:33:11 AM (GMT-6)

Posted 9/2/2021 8:29 PM (GMT -5)
@Garzie I think the ddPCR is what MR may have been referring to, and please folks, correct me if I'm wrong
Garzie, thanks for your elucidating the Bart tests! I think I understand it now! But one thing about the multiple blood draws, never mind the expense, so those are taken at day or week intervals?? or when the bugs get shaken out from rigorous exercise or Teasel Root???

You would think that this is affecting so many people they would have a "one stop shop" to get all the TBD+co-infections tests/diagnoses done all in one place!!! Someone could really make a killing....Hmmmmmm. /s

@Lymie24 yeah that protocol sounds rough, it would wreck anyone, I think just one or two of those are pretty heavy to take on and in you're in for a pretty bad Herx, namely DSF is heavy, causes psychosis in some...

one last bit of advice: get you some Cholestyramine. It is military-grade detox. I can only handle one scoop a few times a month, it causes a Herx usually... but the days after I take it seem like some of my better days I've had during treatment (read: more energy, less myalgias, brain fogs lifted.. etc.)

Post Edited (borrelioburgdorferii) : 9/2/2021 7:39:06 PM (GMT-6)

Posted 9/3/2021 10:15 AM (GMT -5)

borrelioburgdorferii said...
@Garzie I think the ddPCR is what MR may have been referring to, and please folks, correct me if I'm wrong
Garzie, thanks for your elucidating the Bart tests! I think I understand it now! But one thing about the multiple blood draws, never mind the expense, so those are taken at day or week intervals?? or when the bugs get shaken out from rigorous exercise or Teasel Root???

You would think that this is affecting so many people they would have a "one stop shop" to get all the TBD+co-infections tests/diagnoses done all in one place!!! Someone could really make a killing....Hmmmmmm. /s

pretty much all of the specialist labs will do all of the tests for pretty much all of the pathogens associated with lyme - so availability is not the problem
cost and test accuracy is - the tests are expensive and still do not perform as well as needed

and not everyone wants to pay the high cost for say 20 tests - if they dont think they have all the pathogens
hence the labs offer single tests and panels of ones they think people might find useful

the triple draws are taken about every other day i think - so over the course of a week to try and catch a point in time when there is enough bart in the blood to detect

I'm not aware of any labs recommending herbs or exercise as a means of increasing detection rates - not seen any studies on that - suspect it is internet rumour
Posted 9/3/2021 10:47 AM (GMT -5)

Garzie said...
Lymie - its really hard to know

i have a positive test for lyme from Armin labs and many symptoms that fit both lyme and bart - so my treatment is trying to cover mainly lyme and bart

progress is slow but in the right direction the last 18months after aroudn 3 years stuck at appro x 20% of my previous healthy function

my treatment is a complete lifestyle, diet, exercise and behavioural overhaul of my life and a comprehensive mainly herbal protocol based on buhners books- that i have gradually built up slowly over many month's - although i have used ABX in the past i hd only moderate improvements and then had to stop du to raised liver enzymes.
the main things are:
1-Wholefood ketogenic Diet
2-Daily light exercise - walking mainly - plus weights every 3rd day
3-extended protocol of herbs for lyme - per Buhner's second edition "healing Lyme" book
4-selection of co-infection herbs - again per buhner - sida, cryptolepis, alcornea, houtty, teasel, mahonia
5-immune modulation - LDN about 3.2mg per day, and Ivermectin 12mg 1x per week
6-Methylene blue for bart persisters - 130mg / day

hard to say what has helped the most - perhaps the Keto diet was the fastest and most noticeable impact. the buhner herbs seem to help at least as much as abx and have probably moved me forward the most overall but it has been a slow process.

I'm not out of the woods yet - am approx. half way back - but still improving - and in fact as i continue to systematically tune my approach based on what works for me and dropping what doesn't the speed of recovery does also seem to be improving

i am very systematic - it seems to me that this thing is so hard to shake - and no one thing or approach works for everyone - so a person could bounce around trying this and that in an ad-hock manner and never really getting anywhere.
that was certainly what was happening to me - i was stuck. so i got systematic with researching, with trials and measuring outcomes - and changed from short sharp shock type therapies that i just couldn't tolerate - to careful low and slow step by step approach - and i slowly started to move forward.

That sounds like a good plan.

I've changed my diet drastically, but I've never dived into Keto or even low-carb. I don't need a complete run-down, but what are your go-tos with Keto. Do you do dairy? Any fruit?

How is LDN and Iver working for you? Do you feel they are worth the expense? I've tried LDN in the past, but perhaps not for long enough.

I think I'm going to start adopting a philosophy like yours. I've tried many aggressive therapies over the years because I just want to be done. This isn't working.
Posted 9/3/2021 11:05 AM (GMT -5)
yep - all my life i have used my resilience and determination to push through stuff when it got tough - even made a living out of it - so with this i attempted to do the same - but with lyme - that was counter productive - so i had to learn and adjust.

Keto - is really simple - after 1 month you wont even need to think about it
i only eat whole foods - no packets or bars or "keto products"
basically
-non starchy veg for fibre and nutrients - mainly celery, broccoli, salad leaves, lettuce, green olives, carrots, mushrooms
-meat, eggs, fatty fish for protein and fats
-additional healthy fats as needed for weight or energy - Extra virgin coconut oil, Extra virgin olive oil, grass fed organic butter ( the only dairy i eat)
- no fruit at this time - i tried to keep some when i first started - but it wasn't helping - felt better without it

LDN effects me dramatically - adversely at first - then improved energy and function - but i have to go very slow - up to 3.2mg after around 1year

Iver - i think is helping modulate the immune system and speed up my recovery - but is another slow burner - not an overnight change - but my tracker started to rise more quickly from around the time i started

neither are expensive - very cheap in fact - i buy them both from international pharmacies and work out the dosing myself -

Iver is easy as it comes in 3mg or 6mg pills -

LDN i dissolve 50mg in 50ml of water and 25% alcohol to ensure it keeps and then dose 1ml per mg with a graduated syringe - works well - 1 50mg tablet lasts me over 2 weeks

my tracker looks like this:
https://ibb.co/lgtc3mm
the bright red squiggly line is the overall health indicator score - and is steadily rising - faster since adding the ivermectin ( red spikes at bottom right ) - i think i will be able to start part time work when its around 8.2 on the scale - only a month or so away if all keeps going according to the trend
Posted 9/3/2021 11:30 AM (GMT -5)
Are Bart antibodies hard to detect?

I wondered because my latest test from Vibrant Wellness showed my antibodies in the red scale for Bart. In the past I always had low levels usually just below the cut off. I have been doing buhners bartonella and lyme protocol for about 6 months now. I have seen some improvements but its hard for me to say what they are from. As my body is still recovering from my surgery last summer.

My problems have always been muscle stiffness throughout my body.
Posted 9/3/2021 11:45 AM (GMT -5)
i have that too Joe

its not so much that Bart antibodies are hard to detect

the tests are perfectly adequate to detect them if they are present and the technology to do so has been around for decades - the problem seems to be that especially in chronic illness - people with bart are not producing the expected antibodies - so they are not there for the test to detect - or they are there but only at lower levels than you would expect for an active infection - and hence still give a negative result.

i am not sure if its been fully studied - how exactly bart does this immune suppression - but its well documented that only a fraction of those that are tested positive via PCR or culture methods have positive antibodies.

lyme also disrupts the human immune system - preventing it making appropriate antibodies - so its possible that - since many people with lyme also have bart - that lyme is partly responsible for the immune suppression and lack of bart antibodies also - or it could be something that bart does specifically to aid its survival
Posted 9/3/2021 1:50 PM (GMT -5)
Thanks Garzie for taking the time to write that up.

I generally feel Bart is my driving infection. I was sick years ago for about a month low grade fever pretty much bedridden and mysteriously got 90% better. Lot of eye involvement they were worried I may go blind. From that point on strange rashes would come and go along with other strange weirdness that would come and go. Long before I ever heard of Bart. I got Lyme later but I think my body deals with it.
Posted 9/4/2021 4:32 AM (GMT -5)
yep - odd rashes are a hallmark of Bart - not just bart streaks - but the others don't seem to get as much press - as they are less distinctive

coming and going is another typical symptom of both bart and especially lyme - bart can give cyclic symptoms - esp evey 4-8 days - but also relapsing and remitting over months or years - both together even more so.

be interested to hear about your rashes - i don't get bart streaks / striae - except once a small very faint example - but i get odd rashes - especially gritty bits in blocked pores - and lots of tiny pustules that are not inflamed - almost little blisters on my arms and legs - these worsen when treating with antimicrobials
Posted 9/4/2021 5:58 AM (GMT -5)
Speaking of odd rashes, I've got petechiae which I'm fairly sure is Babesiosis-related, (read: Petechiae are small red blood marks just beneath the skin..)--I have some odd acne-like but more like nerve-blisters-related- outbreaks in my cranio-cervical area, up along my upper spine neck lately, always with relentless pain there and migraine headaches--between shoulder-blades, and really strong neuropathy pains, numbness, twitching in that same area--between mid upper spine and shoulder blade,

being that these assorted-bacteria, virus, nematode what have you.. like to get band together for survival in slime-biofilm-colonies, the wildly-varying presentations of rashes and symptoms does not surprise me...

What does surprise me is the ongoing ignorance of these medical facts. (drops mic *) faints ** lol
Posted 9/4/2021 12:31 PM (GMT -5)
For years I got what looked like ringworm on my arms, abdomen and legs. It wasnt fungal though. It would come and go and change locations.

Recently I got a spot that looked like someone took red paint from a dropper and splattered it on my foot just under the skin. I was told it was a bruise by a dermatologist and it should go away in a couple weeks. I mentioned I had it for several months and he said hmm and moved onto the next subject. Tiny red specs would then break off from the main red spot rather weird.
Posted 9/6/2021 8:44 AM (GMT -5)
edit: deleted my post because I have zero interest in helping Lymie24 after his other insulting posts in response to mine. Good luck.

Post Edited (orbitingaround) : 9/6/2021 9:27:44 AM (GMT-6)

Posted 10/9/2021 7:38 PM (GMT -5)
Lymie24,

I know this was over a month ago, but I was looking back at some of your previous posts, since your symptoms sounded similar to mine. I posted here, but I don’t think I saw the pictures you posted until tonight.

YES. I do get marks very similar to these. Sometimes I get a row of tiny, short scratches. Also, I get what I call perforated scratches on my shoulder blade. It’s a line that’s perforated instead of solid, and they often bleed in my sleep and leave little scabs.

In your photo, it looks like a cluster of small marks and lines running in various directions. I have had that, too. My larger scratches often look like one or more jagged lines.

The pink patch at the upper back is a frequent presentation for me. I get that most often on my abdomen in the same area each time, especially when I have a big flare.

I have the deep purplish striae on my abdomen. When they’re not inflamed. they look like deep lines/jagged wrinkles. When they flare, they turn purplish and widen and feel painful, inflamed, and they sting. I will have a circular swath of pink skin overlying one of the striae, like the pink circle on your upper back. I usually get a little bump in the pink patch, too.
Posted 10/10/2021 4:51 AM (GMT -5)
in case it is of help - i have seen photos of "perforated scratches" on the Breaking down Bartonella facebook group - look highly distinctive - v small blood like spots all in a line - like a scratch that is partially healed. i think those are about as good as a positive test from a speciality lab.

Post Edited (Garzie) : 10/10/2021 4:04:47 AM (GMT-6)

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