KGG lets talk.

I had an 18mm ASD and Lyme disease.

Basically they couldn't figure out what was wrong with me, then they found the ASD. I had open heart surgery and was still SUPER SICK. Then 2 weeks after my surgery they gave me a lyme test and I was positive.

Hi, GreenT603a71

Thanks for posting. Sorry that I have not been prompt in responding. I have not been reading here for a few weeks. Things have been a little busy. I just updated on my son on the PFO closure post.

I am sorry that you have Lyme. It certainly is a difficult disease to have!!! What are you doing for treatment? And at what point did they start it after your surgery? I am wondering if my son could actually tolerate treatment at this point, since it tends to make you worse before you feel better.

Would love to hear the details.

Thanks,
Karen

Hi Karen,

I had my open heart surgery on february 22nd of last year and then I started antibiotics for lyme on March 15th, so a little over 2 weeks after. No joke I was REALLY SICK. It took a LONG time before I could even say I felt " good." It has been exactly a year later,and I am just starting to feel like a somewhat normal human being again. Yesterday I walked for 25 minutes on the treatmill which is the most I have done in over 2 years. In general I am still pretty dizzy, and I can't drive for more that about 15 minutes. I also still have visual symptoms and seem to have developed IBS( probably from all the stress). But honestly, this time last year, I thought I was on deaths door, and things have gotten so much better. I am so relieved that they even found the ASD.

As far as medication goes, they had me on doxy for 2 months, then omnicef for 5 months. All oral antibiotics, no IV. I had some pericarditis after my surgery. I just took some advil for that. I am also on toporol because I was getting an ENORMOUS amount of extra beats. Since about january they have gotten alot better. My doc said while your heart is shrinking back to the normal size ( and my heart was severely enlarged) its electrical system can be pretty out of wack.

I had all these crazy symptoms for a long time and honestly I don't know if it was the lyme, the heart surgery, the antibiotics, the anethesia, or WHAT. Too many variables I guess. I am only 28 years old and had been extremely active my whole life so I can appreciate what your son is going though.

Anyway, if there is anything i can help you with please ask. Things will get better!!! It takes a lot of patience and courage. It is frustrating and awful but I know your son with come through this!

Heather

Heather,

Thank you so much for sharing your recovery and treatment with me. My eye brows shot up and jaw dropped when I read that you started treatment a little over two weeks post op! Wow! You must be a very strong woman!
And you were blessed with quite a physician to have ordered a Lyme test!!

Thank you for letting me know where you are at a year later. I believe that I need to drop my sights a little as to how fast he will recover. You are right, there are so many variables when Lyme and treatment is thrown into the mix it is hard to tell what is causing what. I used to be able to tell, now I can't.

Kudos on your treadmill time! My son will be starting cardiac rehab in two weeks. I am holding my breath on whether he will tolerate it or not.

I really appreciate you letting me know how you did with this.

Best,
Karen