DS's Heart

[tpotter]

Just got a callback from DS20's new cardiologist. He was born with a congenital functional bicuspid aortic valve, that we found out about 5 years ago, when he was having a R/O for Marfan's Syndrome (didn't have that.) At the time, and up until his last appointment at 18, he had a mild leak, and just needed to keep an eye on it.

 

He went in this week, and the doctor called back last night, and said the leak is now moderate to severe, and he has to go in for a stress test, so they can determine just how bad it is, and if he is going to need surgery! I am very worried, because DH already had a mitral valve replaced 2 years ago, and now is on coumadin...dr. tried to repair it, but couldn't.

 

DS has chronic lyme, viruses, and lots of stomach issues, plus has Asperger's (although IVIG helped increase his social skills by 7 years overnight, so I suspect the Asperger's was probably PANS all along.) Being a college student, he had an AWFUL diet for the past 2 years, getting even worse when he actually went away to college this past year.

 

To all my incredibly intelligent and wonderful online friends, does this sound like anything lyme-like or otherwise that could make the leak worse in just 2 years, or could it have been the diet, or something else? I know if I ask the cardiologist, he won't have a clue (I've learned that traditional drs. just don't get it, and I also know that symptoms we've seen in the past with my other DS, such as enlarged spleen, low WBC, etc. turned out to be babesia....which you guys suggested to me.)

 

Thank you

[mdmom]

I was thinking someting Lyme-ish like Bartonella, which can affect the heart. The long-term effects of Lyme and co-infections can cause permanent damage, according to what I have read and been told from our LLMD. It's one of the reasons I choose to keep treating my children for Lyme, Babesia, Bartonella and Mycoplasma still (we've been at this 2 years).

 

Can you ask your LLMD his opinion?

[tpotter]

I was thinking someting Lyme-ish like Bartonella, which can affect the heart. The long-term effects of Lyme and co-infections can cause permanent damage, according to what I have read and been told from our LLMD. It's one of the reasons I choose to keep treating my children for Lyme, Babesia, Bartonella and Mycoplasma still (we've been at this 2 years).

 

Can you ask your LLMD his opinion?

I will. He hasn't been treating DS20 for about 1 year, because DS20 developed recurrent C-diff, so we had to stop using abx. We are seeing ART on Monday, and I'll ask her. But, I also thought I'd ask you guys. I'm also wondering if it was all the junk food and drink he was having (like Monsters, Mt. Dew, no fruit and veges, lots of burgers, etc...keep in mind he's a college student away at school for the first time.)

[tpotter]

OMG...I just looked up bart + heart, and they specifically mention the case of a 6 year old with bicuspid aortic valve and aortic valve calcification: http://ats.ctsnetjournals.org/cgi/content/full/77/2/704

 

 

I just printed out the article, and will ask him DS to bring it to his cardiologist. I'll also talk to the LLMD about it and ART.

[Dedee]

I am a Cardiac nurse for 25 years and a PANS / lyme Mom. My opinion is that the worsening of his condition could be related to chronic infection. However, if he has structural defect in the valve that is severe he is going to need repair regardless of the cause. If this could be delayed for a while until you get the lyme cleared more that would be great, but if a cardiologist says it should be fixed then it isn't anything to fool around with. I am sure this is terrifying for you. I'm not trying to minimize any Mother's feelings when it comes to their children, but I am sure he would do just fine. He is young with strong heart muscle (never had a heart attack I presume), so his odds are very good for a optimal outcome. It does seem unfair that this poor child would be hit with so much during his short life. Sending positive thoughts and vibes your way.

 

Dedee

[tpotter]

Thank you Dedee. It does help to hear from a cardiac nurse. He is supposed to get an appointment ASAP for a stress test this week. DH just had a mitral valve replaced 2 years ago, so it's especially scary. What I wanted to know was if this could be infection triggered, because I doubt the cardiologist would think of that, and I want to make sure that if he needs surgery that we are still getting to the root cause. And, at least knowing, we might be able to get very, very aggressive tx at the insurance company's cost for a change.

 

Yes, it is very scary. DS was amazing the other day. I took the call, but he was home for a few minutes between shifts where he works (he took a double shift yesterday). He had me put the phone on speaker, because he was in the middle of something. He asked some really good questions. Today, when I told him he needs to make certain they don't have him do any heavy lifting at work (he works at a grocery store), he told me that I was "just over-reacting" I know that he's concerned, though, and interesting HE brought up the issue of if he needs a new valve, he would probably get the "pig's valve", because he doesn't want to end up having to take coumadin like his father. But, I know he's concerned.

 

And, no, it's just not fair that he keeps having so much happen!

[rowingmom]

The fact that your DS has been investigating his options means he is concerned. He is probably scared, and by telling you that you are "just over-reacting", is trying to alleviate his own fears. He would be happy (and dismiss his concerns) if you admitted to "over-reacting", but in this case you probably won't (and shouldn't).

 

Just because you have had to discontinue abx doesn't mean you have to completely stop treatment. DD11 has stopped treatment for lyme/bart, but is still taking herbals, and will continue to do so for a long time. We are using a combination of Buhner's new bartonella protocol (he has added sida actua and houttuynia). He also recommends hawthorne for heart involvement. Zhang (lots of garlic and houttuynia), Byron-White (A-bart, A-L), along with oil of oregano and olive leaf extract. I have recently ordered a near-ir sauna to try to invoke a fever response. It will be a few weeks before we get it, but I can't help but think that fever may assist in eliminating some infection. She has been on the full dose Buhner protocol for 1 month now, I was using a lower dose while we were taking abx. She did have a herx reaction - very visable 3 days after implimentation of the full dose, and she has herxed (mostly emotional) with the addition of houttuynia and with each increase in the concentration of the houttuynia tea I am making her. Her ticcing and bone pain are now at an all time low. If it will last, I don't know, but we won't be giving up on this any time soon. Just my feeling that her immune system wasn't able to handle the infections before, and probably would relapse without support..