Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

[kms1990]

I trust Dr Kaufman completely. I believe he works closely with Dr. Robert Mozayeni one of the real experts on Bartonella (who is also associated with Galaxy). Galaxy Diagnostic testing was designed with the help of a veterinarian Edward Breitschwerdt who has a profound interest in Bartonella. He believes it contributed to his own fathers death and has written about it. You can read an article about his fathers disease which is very interesting here. https://wwwnc.cdc.gov/eid/article/15/12/ad-1512_article

I have a firm believe there is no quackery here and this infection really does cause a constellation of various illness and symptoms depending on susceptibility.

Dr Kaufman found it PCR positive in my blood with the triple blood draw. My body also did not have antibodies towards it. I think that combination of those facts has made me very ill.

 

[Folk]

I trust Dr Kaufman completely. I believe he works closely with Dr. Robert Mozayeni one of the real experts on Bartonella (who is also associated with Galaxy). Galaxy Diagnostic testing was designed with the help of a veterinarian Edward Breitschwerdt who has a profound interest in Bartonella. He believes it contributed to his own fathers death and has written about it. You can read an article about his fathers disease which is very interesting here. https://wwwnc.cdc.gov/eid/article/15/12/ad-1512_article

I have a firm believe there is no quackery here and this infection really does cause a constellation of various illness and symptoms depending on susceptibility.

Dr Kaufman found it PCR positive in my blood with the triple blood draw. My body also did not have antibodies towards it. I think that combination of those facts has made me very ill.

Oh don't get me wrong. I don't think Dr. Kaufman has anything to do with quackery at all!
He's one of the best doctors I've been to. Caring and thoughtful. I just meant he might be going the wrong way (or not, who knows).

 

[perrier]

@Folk - I am a patient at the Open Medicine Clinic in CA and a patient of Dr. Kogelnik. Dr. Kaufman was heading up the Galaxy Testing at the Clinic when I had these tests taken. I tested positive on the 3 day Galaxy Test. I am a long time patient of the Clinic. So far, no recommendation to treat for Bartonella based on these test results. I believe, as to my particular case, my doctor was not yet convinced that the Galaxy tests results were accurate (this was a conversation that took place over a year ago). He gave me the pros and cons of the current testing and treatment and I decided that I would wait to see how the tests/treatments worked out for a larger sampling of patients.

As a side note, we did have one of my dogs tissue sanples tested through Galaxy. This dog developed lymphoma and he was being treated at University of California at Davis Veterinary School. We were able to have the dog euthanized through U.C. Davis, so he (Wally) could do his part for science. The Open Medicine Institute (the research arm) connected with the Open Medicine Clinic was able to coordinate with U.C. Davis to get his blood and tissue samples for their repository. U.C. Davis Vet School also coordinates with the National Cancer Institute to share cancerous tumor samples.

No Bartonella was found in Rusty's (the dog) frozen tissue samples. I paid for this testing myself, since this was not a test that OMI had planned for in their research budget. Relied on the researchers to decide, whether blood or tissue samples would be best to test for the first round of testing. If Galaxy blood tests are found to be reliable in a larger sampling of human patients, I may offer up the $$ needed for testing of Rusty's blood.

I'm very interested that you say Dr Kogelnik had some questions regarding the Galaxy test. It's then hard to know what to believe.

 

[kms1990]

Oh don't get me wrong. I don't think Dr. Kaufman has anything to do with quackery at all!
He's one of the best doctors I've been to. Caring and thoughtful. I just meant he might be going the wrong way (or not, who knows).

Sorry Folk. Was not reading into it that way. I just think bartonella is really big issue not addressed well by medicine right now.

I think its clear that not every CFS patient is going to have it. But I think a large % might. Its amazing speaking to so many people who get a lot better treating this infection when they had mysterious illnesses. Galaxy seems to be a very reliable lab for testing (probably the best by far), but the again when you learn more about how the organism acts there will never be a lab or test with flawless accuracy. Its seems very likely at least for now there will be a lot of false Negatives when testing.

 

[pibee]

Does anyone know how long he usually treats bartonella?

I was 18 months on rifampin, and I stopped because I thought I dont benefit (i was then improving from something else), and since then approx 11/2016 i started to have very fast downhill, relapse.
Whenever I reintroduced Rifampin, I got 104 F fever, took me 4 times to realize it's from rifampin - I developed drug induced fever, so i cant ever use it again.
I'm considering rifabutin

Most active for bartonella was bactrim, at first looked so promising, but later I didnt react, even though it permanently almost completely fixed my TMJ/facial numbness. First I had severe herx with psychiatric rages and then after 2-3 days felt extremely calm, big improvement, also ortostatic intolerance improved and energy. But it didnt stick!

What I wonder does anyone know dr Kaufman/Chheda's opinion if bartonella can be trigger for autoimmunity/CFS? @Jesse2233 ?

 

[Folk]

Does anyone know how long he usually treats bartonella?

I was 18 months on rifampin, and I stopped because I thought I dont benefit (i was then improving from something else), and since then approx 11/2016 i started to have very fast downhill, relapse.
Whenever I reintroduced Rifampin, I got 104 F fever, took me 4 times to realize it's from rifampin - I developed drug induced fever, so i cant ever use it again.
I'm considering rifabutin

Most active for bartonella was bactrim, at first looked so promising, but later I didnt react, even though it permanently almost completely fixed my TMJ/facial numbness. First I had severe herx with psychiatric rages and then after 2-3 days felt extremely calm, big improvement, also ortostatic intolerance improved and energy. But it didnt stick!

What I wonder does anyone know dr Kaufman/Chheda's opinion if bartonella can be trigger for autoimmunity/CFS? @Jesse2233 ?

He said to me, about a year. But I would guess it would depends on your response.
And who told about "drug induced fever"? Never heard of it and it makes a lot more sense.
Most people would call it "herxing" and would see having high fever as a good sign that the body was reacting to the bacteria (even after 3 years with no improvement).

 

[pibee]

He said to me, about a year. But I would guess it would depends on your response.
And who told about "drug induced fever"? Never heard of it and it makes a lot more sense.
Most people would call it "herxing" and would see having high fever as a good sign that the body was reacting to the bacteria (even after 3 years with no improvement).

It came each time after rifampicin within 3 hours. it always started the same, discomfort in my legs and then fast spike of fever to 104 F, i barely managed to get it down with brufen, couldnt walk to toilet, I felt like I was dying.

Google drug-induced fever , it is known for rifampin. Very rare.

And it went away without any antimicrobials, within 12 hours. This is not a herx

and also i was taking 18months of rifampin without any herxing

Definitely not a sign of me improving, btw, I just got worse. Last time I even prayed to God, even though I am an atheist, but I just couldn't calm down I thought I was dying.
Went to ER, got IV ceftriaxone felt 80% better within 24 hours, thought this is Lyme then,, I got 20 days of IV ceftriaxone, and was quite better, not like first few days though. When stopped relapsed within few days, got many gut issues (from IV!), huge gastritis .. IQ/processing challenges - couldnt read. All within days of stopping

later i stabilized at my usual level that I was at last year. (worse than before all antibiotics :/ )

Then I did CellTrend CFS/POTS antibodies and they are sky high.

Now I think, if ceftriaxone even touched Lyme, or it was lowering glutamate?

Glutamate theory is catchy, but there are 3 things against:

1) I got ceftriaxone in 2014, no response. Later in 2014 I had mega herx on doxy, and somehow lyme activated - I got 100 new symptoms over night. If it was glutamate effect, it would affect my 20+ yrs old symptoms in 2014, too, and it didnt.

2) this time in 2017, on IV ceftriaxone I had also some mild herx - a bit of dementia moments and jaw problems, I started to open my jaw weirdly...(I normally have TMD, it responded mostly to bactrim)

3) my Elispot/LTT for Lyme went from 2,5,3 (month before IV ceftriaxone) to 0,0,0 (2 months later)

​

I plan to test Galaxy bartonella to see if I still have active, and also see about CIRS, hoping there is still some trigger driving my big anti-neuronal activity. CFS is just 50% of my problems, I have big psychomotor, and circadian sleep disorder

 

[jorans]

what's the website for galaxy labs?

 

[Wally]

@jorans - http://www.galaxydx.com/web/

 

[Learner1]

Oh don't get me wrong. I don't think Dr. Kaufman has anything to do with quackery at all!
He's one of the best doctors I've been to. Caring and thoughtful. I just meant he might be going the wrong way (or not, who knows).

I'm a patient of his, too. Though he's run many tests on me, bartonella was not one of them. My impression is that he looks at us as unique individuals with unique genetics and health histories and diagnoses and treats accordingly.

 

[duncan]

Though he's run many tests on me, bartonella was not one of them.

I'd be curious as to why he didn't test you, since symptomatically Bart can look a lot like ME/CFS in some cases. It could have been an oversight, or he may have really good logic. Recently my ID ran a bunch of labs, but failed to include Bartonella; when I see him I will be nicely asking why (I suspect it was a mistake on his part.)

 

[perovyscus]

I have unrelated question but it would be much appreciated. Is it pretty easy to get an uber/lyft from San Jose Airport to Dr. Kaufmans?

 

[Diwi9]

I'm a patient of his, too. Though he's run many tests on me, bartonella was not one of them. My impression is that he looks at us as unique individuals with unique genetics and health histories and diagnoses and treats accordingly.

@Learner1 - Were you tested for VEGF? A high VEGF is an indicator for Bartonella. If your test came in low, he may have elected for you not to do a Bartonella test.

 

[Vojta]

I have unrelated question but it would be much appreciated. Is it pretty easy to get an uber/lyft from San Jose Airport to Dr. Kaufmans?

I stayed in Santa Clara close to SJC and took Lyft rides to Mountain view. I never waited more than 5 mins. You shouldn't have any problems at airport.

 

[EsetIsadore]

@Learner1 - Were you tested for VEGF? A high VEGF is an indicator for Bartonella. If your test came in low, he may have elected for you not to do a Bartonella test.

That’s interesting. I’ve never heard that. My VEGF consistently tests low. I’ve also twice tested positive for Proteinase-3 Antibody. I tested positive on Galaxy’s triple-draw for Bartonella. Then, I do also have CIRS, which affects VEGF levels. Where did you learn that Bartonella infections result in high VEGF?

 

[Diwi9]

That’s interesting. I’ve never heard that. My VEGF consistently tests low. I’ve also twice tested positive for Proteinase-3 Antibody. I tested positive on Galaxy’s triple-draw for Bartonella. Then, I do also have CIRS, which affects VEGF levels. Where did you learn that Bartonella infections result in high VEGF?

There is a published Lyme specialist, can't remember his name...is it Horowitz? He has long presentation on youtube and discusses it briefly. My doctor also told me the same thing.

 

[EsetIsadore]

There is a published Lyme specialist, can't remember his name...is it Horowitz? He has long presentation on youtube and discusses it briefly. My doctor also told me the same thing.

Curious. Thanks for the lead.

 

[aquariusgirl]

Just got s positive bartonella diagnosis with DNA Connexions. Being treated by a doctor who mostly treats autistic kids.

I was skeptical before. Now not so much .

But doctor says treatment likely won’t eliminate the infection presumably because of underlying immune dysfunction.

 

[Learner1]

Did the doctor have a plan for your immune system?

Here's a recent talk by Horowitz, which mentions Bartonella...

 

[aquariusgirl]

@Learner1 if she knew how to fix that, we could all pack up and go home, right? That would be a cure IMO>