DS-20 needs open heart surgery

[tpotter]

Cardiologist said he doesn't think it has anything to do with infection, even though I pushed, and pushed and pushed. Wouldn't even consider testing. Said that there's no evidence on the heart. I even asked our PCP, and pointed out that we had been told for years that my kids didn't have PANDAS, even though it turned out that they did (plus a whole lot of other infections, too.)

 

I am especially concerned, because bartonella can cause the aortic and mitral valves to fail, and he had to stop abx tx early 2 years ago, because he developed c-diff (so I pulled him off the abx, and overall, he seemed to be doing ok.) But, now his functionally bicuspid aortic valve (should be tricuspid, but apparently a congenital defect), which only had a mild leak as late as 2 years ago) is now a moderate/severe leak, and needs to be replaced as soon as possible!

 

Anyone know anything about the following test for bartonella? http://www.galaxydx.com/web/human-health/faqs/

 

I want to insist that they test, because he doesn't need a new valve failing.

 

We are all reeling, and it's very scary.

[T_Mom]

tpotter, I am so sorry -- You have been such a strong advocate for your family for so long,

Prayers sent your way.

[SSS]

Also sending prayers and good thoughts your way---

I have heard the Galaxy test is good, I used to read a Bartonella board that had a highly esteemed Dr. who seemed to have Bartonella as his focus, and used Galaxy labs.

I believe it requires off antibiotics, and 3 blood draws in 1 week.

Also, Fry labs does blood smears looking for Bart.

Hang in there- more good thoughts your way for resolution and recovery for your son.

P.S.

I did personally get a positive Bartonella test through Igenex.

[filinha1]

Would it make any sense do you think, to try to get in touch with someone in Brian Fallon's group at Columbia University? I don't know if they might have some good advice regarding Lyme co-infections and best practices prior to surgery, but here is the link with contact info: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=baf1&DepAffil=Psychiatry

 

I'm sending hope and good thoughts your way.

 

H.

[bigmighty]

Oh my gosh. Don't do anything without another opinion. Hoping someone on this board can steer you toward the best place to inquire. So sorry. Sending virtual hugs.

[beeskneesmommy]

I am sorry! How terrible! Re: the testing lab, Galaxy: I have spoken with the guy who helped develop this test. He is a vet at NC State but when DS was + for Lyme and Bart he and I talked as he is really one of the leading researchers in the country for Bart. He thinks that Bart is much more serious than the CDC will consider. Here are some links to video, profile and a couple ofhter things. He has a plethora of research to google..

 

 

http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=4033

 

http://www.cvm.ncsu.edu/docs/personnel/breitschwerdt_ed.html

 

http://www.ncagr.gov/oep/oneMedicine/noms/2010/Breitschwerdt_Edward_Bartonellosis_The%20Hidden_Epidemic.pdf

[smartyjones]

tpotter -- sorry to hear this. even more sorry that i have no where to refer you. just wanted to say that i am with you in your quest to discover this important information. i think you are very much on the right track in working to discover this and unfortunately, you are simply ahead of the medical knowledge/concern at this time.

 

what does your ART doc and LLMD say?

 

2 years ago, my ds11 had labored breathing during sports. our ped tried to be thorough -- he blew very low on the tube thing, had low pulsox - chest X-ray was clear, blood tests showed nothing, EKG showed small blip, doppler cardiograph showed small heart murmur. diagnosis -- exercise induced asthma, likely inhaler for rest of life.

integrative MD found lyme, bartonella, babesia, myco, strep. now he is doing great with no inhaler. mostly keeps up with kids his age.

 

i know not nearly as serious as what you are facing -- but, just to tell you i very much think you are right to follow this and make sure a new valve will not suffer.

 

good luck in finding the correct info.

[mdmom]

tpotter....

So sorry you are dealing with this. Our LLMD told us that Dr. B in NC is a vet who has done the most research on Bartonella of any other doc. He was inspired to do the most research on all the strains of Bartonella that affect humans (I believe there are 9) because his own father who lived on Maryland's Eastern Shore died of Bartonella complications (he was elderly).

 

I personally emailed Dr. B about my daughter and gave him some background on her. He highly recommended that I do the testing because she is negative on testing for the only 2 strains looked for through Quest and LabCorp. She has the classic clinical picture for Bart - the "stretch marks", body swelling, anger (among other things) but is negative every time we test. We still treat based on clincial symptoms and she is currently on IV Rifampin/IV Avelox protocol.

 

I have chosen not to test simply b/c of the expense. But I can read in your words that you really want to be able to show positive test results to your docs if possible.

 

Here's a blurb from Dr. B's research paper on Bart:

Endocarditis can be induced by a spectrum of Bartonella species in dogs and human patients and is the best example of documented disease causation for this genus. Historically, Bartonella 3 species have been a cause of culture-negative endocarditis in people and dogs because the diagnostic methods used by microbiology laboratories were not adequate to isolate these bacteria. Now, by using specialized techniques, a spectrum of Bartonella species have been identified in research and diagnostic laboratories in different parts of the world—in heart valves or in blood cultures from dogs and people with endocarditis.

 

3 It is important for physicians and veterinarians to recognize that some of these Bartonella species are found in the blood of cats, dogs, rats, ground squirrels, and rabbits.

 

I encourage you to email Dr. B directly. I will PM you the email address I used.

 

Hang in there.

[philamom]

Here are some notes from Burrascano:

 

Bartonella-Like Organisms

 

-Galaxy Diagnostics uses culture-enhanced PCR and they claim higher sensitivity for Lyme-associated Bartonella.

 

-More prevalent in Northeastern ticks than even Borrelia!

 

-Clinically, seems to be a different species than "cat scratch disease"

 

-CSD Tests are insensitive (serologies and PCR). Miss up to 80% of clinically defined cases.

 

Clinical Picture:

-CNS symptoms out of proportion to physical.

-Encephalopathy- encephalitis, irritability, anxiety, seizures, psychiatric syndromes, insomnia, gastritis, rashes, tender skin nodules, sore soles, am fevers, light night sweats.

-Persistent CNS symptoms despite Lyme Rx.

 

Thinking of you tpotter!

[sf_mom]

I am so very, very sorry to see your post. I would definitely follow your intuition and insist that they collect tissue for testing. If they won't, I'd get a second opinion and find someone who will. I think it could be invaluable information and especially if he has complication with the valve in the future.

 

I share your worry as our five year old has heart related issues (aneurysm, etc.) along with Bartonella/Lyme. I know they've also found Lyme in the heart valve and might also consider PCR testing for Lyme.

 

Lots of prayers.

[lfran]

So sorry. My thoughts are with you.

[tpotter]

Oh my gosh. Don't do anything without another opinion. Hoping someone on this board can steer you toward the best place to inquire. So sorry. Sending virtual hugs.

Unfortunately, I think this is correct...that is the surgery. We know the cardiologist and the surgeon, as DH had mitral valve replacement 2 years ago (I have always suspected all the infections for him, too, but he REFUSES to accept it, even though his Lyme test is the only one in our family that actually came back CDC positive. The rest of us were based on clinical symptoms, and even his clinical picture is quite positive.

 

The decision on my son's valve was made by doing an echo...found that the leak had increased to moderate/severe, and then doing a MET test (stress test) to confirm it. I asked the dr. if he could just repair the valve, but because it is a bicuspid, instead of tricuspid, he said there's really no way to truly repair it. I trust his opinion on this part, but not the infection part, and there's no way I'm not going to absolutely confirm beyond a shadow of a doubt that this was not caused by infection.

 

I like the idea of trying to get hold of Dr. Fallon, and will try to call him. I've also now got an email into Galaxy Labs, per MDMom...thanks. I've also sent an email to our dr, and asked him to check into doing the lab, and I have a call into the vet to see if the bartonella test he did on our dog (the vet says it is VERY accurate, unlike the human tests) can be done on our son. Don't have much time to do this, but I'm doing as much as I can.

 

BTW...I have to thank our ART dr, who did a test that sent up red flags, and told us to get him to the cardiologist. Otherwise, we would never have known. Can you imagine if the cardiologist knew that the test that found this was done by and "alternative" dr? (lol)

[tpotter]

I am so very, very sorry to see your post. I would definitely follow your intuition and insist that they collect tissue for testing. If they won't, I'd get a second opinion and find someone who will. I think it could be invaluable information and especially if he has complication with the valve in the future.

 

I share your worry as our five year old has heart related issues (aneurysm, etc.) along with Bartonella/Lyme. I know they've also found Lyme in the heart valve and might also consider PCR testing for Lyme.

 

Lots of prayers.

Thanks for the prayers. How did they find the lyme in her heart?

 

What is the aneurysm related to...do they know?

[tpotter]

Here are some notes from Burrascano:

 

Bartonella-Like Organisms

 

-Galaxy Diagnostics uses culture-enhanced PCR and they claim higher sensitivity for Lyme-associated Bartonella.

 

-More prevalent in Northeastern ticks than even Borrelia!

 

-Clinically, seems to be a different species than "cat scratch disease"

 

-CSD Tests are insensitive (serologies and PCR). Miss up to 80% of clinically defined cases.

 

Clinical Picture:

-CNS symptoms out of proportion to physical.

-Encephalopathy- encephalitis, irritability, anxiety, seizures, psychiatric syndromes, insomnia, gastritis, rashes, tender skin nodules, sore soles, am fevers, light night sweats.

-Persistent CNS symptoms despite Lyme Rx.

 

Thinking of you tpotter!

Thank you. This sounds EXACTLY like everyone in my family.

[sf_mom]

I believe the aneurysm are related to the chronic infections since birth and new exposure to bacterial/viruses at time.

 

The other child they did PCR testing for Lyme on heart valve. I do not know what lab though. Just one of many stories I hear about sitting in IV Lab 3 times a week.