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Has anyone had these test results and been treated for Bartonella/Lyme?

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Posted 8/30/2021 3:36 PM (GMT 0)
Good day everyone. I sincerely wish none of us were having to scroll here for health support… and send positive thoughts for healing.
My question is this:
I have had almost every test there is for almost every health condition.
What stands out is:
—Tested reactive to Bartonella IgG twice through Galaxy -Antibody titers were 1:128 and 1:256.
—Three day draw at Galaxy : negative.
—TLab for Bartonella looking at blood “indeterminate” because there is some suspicious activity, but I guess not enough to warrant a positive.
Dr M says it’s 50-50 that I have it. Other LLmDs are not positive but suspect, so would treat.

Has anyone tested like this with low titers and ended up having it, and been treated?
(Btw Galaxy website specifically says titers of 1:256 is an acute infection, but the medical director is not sure I have it, even with symptoms, which is why I’m confused.)
Thank you
Posted 8/30/2021 3:59 PM (GMT 0)
Welcome to the forum!

Have you been tested/diagnosed with Lyme?

I tested positive for Lyme - so was automatically treated for Bartonella and Babesia.

After treating Lyme my doc treated me for bart because Lyme doesn’t travel alone and then after changing Lyme docs I was treated for Babesia as well.

I would get treated if I were you.
Posted 8/30/2021 4:11 PM (GMT 0)
Thank you. Yes tested for everything.
Lyme: IGenex negative two times, but indeterminate on two bands suggesting I should get tested again but docs say negative based on all other tests.
StonyBrook: My C6 was indertiminare but the rest negative.
Spinal tap: negative.
The only suspicious thing for Lyme is that my CD57 was in the toilet at 26. I don’t have typical Lyme symptoms.

Was on doxy and rifampin for 3 weeks, felt like I was dying and my doc was unavailable so I quit the antibiotics. Doc had said I would feel better after two weeks on and I never did so I suspected I didn’t have it and felt I was doing more damage.

Found another LLND and Just finished two weeks of tetra. Felt great the first 3 days then felt malaise and still do even after stopping, Worse now then when I started the abc. Detox doesn’t help, so another reason I’m not sure about anything.

I am pulsing so will start another round, but would feel better knowing if anyone else tested negative or indeterminate before I decimate my gut. It’s so helpful to collect information.
Thank you
Posted 8/30/2021 4:57 PM (GMT 0)
healthyhopeful,

Hello and welcome! I am sorry you’re in this confusing situation. Would you like to share more about what your symptoms are and how your illness started?

What does Dr M say about treatment? Would he do a trial treatment to see if you respond, or does he only treat if he is convinced it’s an active infection based on testing?
Posted 8/30/2021 5:10 PM (GMT 0)
“ Doc had said I would feel better after two weeks on and I never did so I suspected I didn’t have it and felt I was doing more damage. “

Two weeks is way too short of time.
Posted 8/30/2021 5:46 PM (GMT 0)
Thank you -Yes I agree and so did the doc. I apologize These forums are hard to get detailed. The doc intended long term antibiotics and now I know a lot more. I was just referencing my mindset then.
But easier to just get back to the question -anyone tested low titers on Galaxy or indeterminate/negative anywhere but actually had it and been treated?
Thanks so much.
Posted 8/30/2021 5:54 PM (GMT 0)
Walking by Faith: symptoms neurological. Dr M suggested allicin and more testing but indirectly through one of my docs. Ive tried allicin -no reaction. I’ve been onBuhners for 8 mos. nothing. I’ve spent too much time and money on testing. Two other LLMDs want me to continue on antibiotics even though they are only suspicious (I’m pulsing) but would feel better about taking more antibiotics if anyone has been in the same position.
It’s not mold, it’s not any neurological disease you can test for , etc. I’ve tested and retested. Thanks so much.
Posted 8/30/2021 6:05 PM (GMT 0)
i've not been tested by galaxy - few have due to the cost -

but i would just point out that even galaxy themselves in their published paper on their 3 draw digital droplet pcr test - say that it has a sensitivity of 49%.

this means that it will report a negative result for around half of the infected people tested - even though they are infected - so false negatives should not be a surprise to anyone - least of all Dr M

the other tests based on antibody responses are known to be even less sensitive than the 3draw dd epcr - so again do not really tell you much if negative

to be clear - there are no tests on the market that can prove you are not infected with Bartonella - if anyone thinks there is - there is a fundamental misunderstanding of how tests work.

Dr M and others like him - will in these cases have to take a balanced view of symptoms, history, response to treatment as well as test results to make a judgement of what is likely the case.

a therapeutic trial with abx in these cases makes sense

i would not expect a response in 2 weeks though - for me it was more like 2 months and even then progress was slow - others here have had similar experiences
Posted 8/30/2021 6:23 PM (GMT 0)
Really appreciate all the kindness and info in the responses. I also appreciate any clue -I’m so terribly sorry Garza’s about the fact that you didn’t feel any different until two months later -that takes a lot of mental strength treating and hoping but not seeing any results. But -sorry to say -it is inspiring to me to continue. I’m a very health-oriented person and have always avoided antibiotics and always treat things naturally, so need any reassurance I can get to continue abx as it’s mental torture thinking I’m taking all this possibly for nothing. 🙏🏻 As for Galaxy -argh!! Thank you for reminding me about the 3 day draw low sensitivity. The Galaxy website also says my titers mean an active infection, yet the MD of that same lab is still suspicious based on the 3 day negative, but yet disregards the two reactive antibody tests with Galaxy because of low titers. This disease is confusing enough! 😩
Posted 8/30/2021 8:25 PM (GMT 0)
he's a well respected LLMD - i think its possible there are other reasons than the negative 3 draw PCR test that makes him question the bart diagnosis - perhaps if you ask him why he feels the way he does he might explain ?
Posted 8/31/2021 12:11 AM (GMT 0)
Thx Im not seeing him directly. Im seeing another well-respected LLMD otherwise I definitely would have asked. (My current LLMD isn’t positive either but will treat.) Dr M has a relationship with my GP who consulted with him about my results. His responses don’t make sense -which is why Im confused. He says my titers on Galaxy weren’t high enough, even though they were reactive, and just about every website including Galaxy says titers of 1:256 are signs of infection. Thank you
Posted 9/2/2021 12:09 AM (GMT 0)
What are you main symptoms? Just curious
Posted 9/4/2021 12:01 AM (GMT 0)
Hi Eddie -
Just looked at your previous posts - I have similar symptoms - with a few more - burning headaches, tinnitus, tingling legs and arms that can turn to burning some times, insomnia - not because of pain so much, just wired, and costochondritis. All of these symptoms strangely get worse right before meal time or when my blood sugar dips even a little bit. Possibly due to wacked adrenals... I don't know, and haven't met anybody who has that similar circumstance. Since you swim a lot do you notice anything like when your metabolism is higher the symptoms get worse? I know you said your POTS improved with exercise and that's great. For the most part exercise makes me feel better, until my blood sugar drops.
I was IgG positive for Bartonella through Galaxy labs but at antibody levels 1:256 and 1:128. May I ask where you tested postive and what your levels were?
Thanks so much and have a nice weekend.
Posted 9/4/2021 12:03 AM (GMT 0)
BTW the symptoms all get worse at night, and it feels like there is a hamster in my head running on a wheel that goes faster and faster the later it gets. sad
Posted 9/6/2021 12:10 AM (GMT 0)
So you've tested positive for Bartonella and you have Bartonella symptoms. Have you ever owned a cat or been scratched by a cat? Own dogs?

My Lyme symptoms were so minor and basically hidden behind my Bartonella symptoms; all my symptoms were neurological. From Bartonella.

Have you taken the Horowitz questionnaire?

Do you ever wake up with a sore throat that goes away? Do you have swollen glands in your neck? Foot pain? Ever get "ice pick" head pain? Sinusitis?

How long have you been sick? How much tick exposure have you had? If you tell me you grew up in or spent time in Long Island, CT, VT, PA, MA, or anywhere in New England, Wisconsin, or Michigan, well then....

At a certain point testing is pointless and you can just look at symptoms and tick exposure. I felt like an idiot for never even considering I had Lyme, just based on where I grew up.

//Lyme: IGenex negative two times, but indeterminate on two bands suggesting I should get tested again but docs say negative based on all other tests.//

Which 2 bands were indeterminate?
Posted 9/6/2021 2:45 PM (GMT 0)

Garzie said...
i've not been tested by galaxy - few have due to the cost -

but i would just point out that even galaxy themselves in their published paper on their 3 draw digital droplet pcr test - say that it has a sensitivity of 49%.

this means that it will report a negative result for around half of the infected people tested - even though they are infected - so false negatives should not be a surprise to anyone - least of all Dr M

the other tests based on antibody responses are known to be even less sensitive than the 3draw dd epcr - so again do not really tell you much if negative

to be clear - there are no tests on the market that can prove you are not infected with Bartonella - if anyone thinks there is - there is a fundamental misunderstanding of how tests work.

Dr M and others like him - will in these cases have to take a balanced view of symptoms, history, response to treatment as well as test results to make a judgement of what is likely the case.

a therapeutic trial with abx in these cases makes sense

i would not expect a response in 2 weeks though - for me it was more like 2 months and even then progress was slow - others here have had similar experiences

Hey Garzie,

Do you mind linking that study from Galaxy that shows the 49% sensitivity? I can't find it. My doctor wants me to get tested, but I'm skeptical it's worth the cost.
Posted 9/6/2021 4:12 PM (GMT 0)
sure
link is on their ddPCR page https://www.galaxydx.com/bartonella-digital-epcr/

study https://pubmed.ncbi.nlm.nih.gov/32795640/
authors: Ricardo G Maggi 1, Toni Richardson 2, Edward B Breitschwerdt 1, Jennifer C Miller 3
Posted 9/8/2021 4:27 PM (GMT 0)

orbitingaround said...
So you've tested positive for Bartonella and you have Bartonella symptoms. Have you ever owned a cat or been scratched by a cat? Own dogs?

My Lyme symptoms were so minor and basically hidden behind my Bartonella symptoms; all my symptoms were neurological. From Bartonella.

Have you taken the Horowitz questionnaire?

Do you ever wake up with a sore throat that goes away? Do you have swollen glands in your neck? Foot pain? Ever get "ice pick" head pain? Sinusitis?

How long have you been sick? How much tick exposure have you had? If you tell me you grew up in or spent time in Long Island, CT, VT, PA, MA, or anywhere in New England, Wisconsin, or Michigan, well then....

At a certain point testing is pointless and you can just look at symptoms and tick exposure. I felt like an idiot for never even considering I had Lyme, just based on where I grew up.

//Lyme: IGenex negative two times, but indeterminate on two bands suggesting I should get tested again but docs say negative based on all other tests.//

Which 2 bands were indeterminate?

Hi Orbitingaround -
Thanks for your response!

1) Yes I tested "reactive" in IgG for Bartonella. I have been told by Galaxy and others that it doesn't mean total positivity - just that I've been exposed to Bartonella and it could mean my body fought it off.

Because of my symptoms, and reading all the similarities to many people here, I think I might have it. I am only seeking comfort here in finding someone who may have tested negative or indeterminate and then got treatment that worked. I don't need convincing I have a tick-borne infection. I am already down the path of antibiotics, but before I spend the next six months potentially ruining my gut, and maybe for nothing if I don't have Bartonella, I just would love to know if anyone else who tested similarly found they definitely had it. It would help my frame of mind.

As I mentioned before, why I still have doubt is that the top Bart guru is not sure he would treat and or if I have it. Same with one of my docs who treat Lyme patients. Regardless, I found top LLMD docs who will treat, and will see what happens. I have been on herbs for about 18 months and will start my second pulse of abx next week. No herxing, no healing, on the herbs but I do believe it has kept things from cascading further.

2) Yes Ive taken Horowitz questionnaire and have traveled around New England and spent time - many summers - in all those states.

3) No on sore throats, no on swollen glands, no on sinusitis. Yes on foot pain, yes on ice pick headaches.

IGenex Results:
1st time: Results were negative, but two bands indeterminate, not enough for positive result: 34 and 41
2nd time: Results negative but two bands indeterminate, not enough for positive result: 23 and 41.
Stonybrook THREE times - first two times Lyme WB indeterminate for IgG and IgM, third time negative for IgG and IgM.

I am in very good hands with my current LLMD, but still like hearing personal stories similar to mine - sorry not to wish this on anyone, but we are all in this together.
Posted 9/9/2021 11:50 AM (GMT 0)
it seems to me you may be struggling with the concept of the very asymmetric sensitivity vs specificity of these tests

partial or not fully positive test results are the norm with these infections - as the false negative rate is many times higher than the false positive rate - so that will always be the case.

ultimately there are no good tests - so you will be very lucky to get the black and white answer we would all like. in the end we have to make a weighted decision based on all the evidence - which takes us back to the point above.
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