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DS-20 needs open heart surgery


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I'm so sorry to hear this. You guys will be in my prayers.

 

I don't know how tight your time frame is, but could you maybe call some LLMD's and ask for referrals to a Lyme-literate cardiologist in your area? You never know. He can't be the first Lyme patient to be recommended for heart surgery, so maybe an LLMD can refer you to someone who's more knowledgeable about Lyme/Bart involvement in heart issues.

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Tpotter I am so sorry you and your family are going through this. What about trying to find a Lyme Literate cardiologist for a second opinion through lymenet, www.lymediseaseassociation.org, ilads and tbda.org? This seems like an urgent matter that does need immediate attention.

I am not sure about Brian Fallon, he is a psychiatrist employed by Columbia. His recent publications were against anything more than the IDSA 4 week protocol for Lyme. The former president of the IDSA is at the same institution in infectious disease and has publicly vehemently criticized ILADS etc.

I too have heard good things about galaxy, but have not used personally due to needing to be off abx for four weeks, and the cost. I believe that RED who is sometimes on this board is familiar with them if you want to PM him.

All the best to you

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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,

 

My dd is in a fairly good place right now; if it would help at all, I would like to offer my help sending email or making phone calls on your behalf. A bit awkward, I realize, since we don't know each other. If it doesn't feel too weird to you and it'll get you info faster, I'm happy to do it. Let me know.

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Tpotter I am so sorry you and your family are going through this. What about trying to find a Lyme Literate cardiologist for a second opinion through lymenet, www.lymediseaseassociation.org, ilads and tbda.org? This seems like an urgent matter that does need immediate attention.

I am not sure about Brian Fallon, he is a psychiatrist employed by Columbia. His recent publications were against anything more than the IDSA 4 week protocol for Lyme. The former president of the IDSA is at the same institution in infectious disease and has publicly vehemently criticized ILADS etc.

I too have heard good things about galaxy, but have not used personally due to needing to be off abx for four weeks, and the cost. I believe that RED who is sometimes on this board is familiar with them if you want to PM him.

All the best to you

Luckily, DS has been off abx for a very long time, so that shouldn't be too hard to do the test. I will see what I can find out about a lyme literate cardiologist.

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DS was admitted to the hospital yesterday...symptomatic. Cardiologist wants this done ASAP. We all agree, but there's still the issue of bartonella. I got a response back from Galaxy Labs, so now I just have to make certain that part of his valve is sent in for testing. The surgeon who did the consult today looked at me like I was crazy. But, we did ask for a different surgeon, anyway (the one who did my DH's mitral valve 2 years ago.) And, while I'm on that subject...trying to get him to get blood tested for bartonella is like pulling teeth. I keep telling him that it can be contageous, but he just won't follow through. This, time though, it's going to get done, because I've about had it! And, there's also the issue that we know his IgG for mycoP is chronically high, as my IgM and IgG just won't go down...been treating it for 2 1/2 years.

 

Today, my DS was having to make the decision of whether to get a pig/cow's valve (apparently they are now doing cows), and have to get a replacement in 5 - 15 years, or get a mechanical valve, and have to deal with coumadin and the risk of blood clots/bleeding for the rest of his life! This seriously is so bad.

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Sending prayers to you and your family.

 

Robert Mozayeni knows a lot about Bartonella. He is Chief Medical Officer at Galaxy. He also has a private practice in Bethesda and someplace else I think. I wonder if he would respond to an email.

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