Posted 12/24/2013 11:35 PM (GMT 0)
Hi, somehow I missed this thread relating to POTS before. Otherwise I surely would have posted sooner. My 19 yr old son was diagnosed with POTS in October 2013. But not by the cardiologist I had taken him to. The cardiologist (and my son's pediatrician) both advised me to get my son on antidepressants and to have him see a psychiatrist. They believed it was all in his head.
My son had been experiencing symptoms of POTS within weeks after being bitten by a tick in April 2013. He was short of breath, couldn't get a deep enough breath of air, was feeling cardiac pressure and pain. It was awful. By July 2013 he was in the E.R. Experiencing a full-on panic attack, tingling in extremities, fingers locked up (not sure if that was from fear or what!) ...he truly believed and behaved as if he was going to die - telling us he loved us, was sorry for anything he ever did that might have ever upset us, etc etc. it was so frightening to see my son like this.
I work in the health field, I knew he was having a panic attack. But I couldn't even get a blood pressure on him he was so panicked and begging me to call an ambulance. So I called 911 and soon after he was in the hospital, his symptoms subsided. There was no EKG done on him, however the EKG done at the cardiologist in Oct 2013 revealed nothing of concern - no atrioventricular heart block, no heart disease, no arrhythmia. Not even tachycardia.
Throughout all those months, my son insisted - daily - that "something" was wrong with his heart. My husband all along was convinced these problems were all somehow related to this tick bite my son had in April. I wasn't so convinced initially but then the more I research and read online the more I realized it would be foolish to not at least rule it out. The pediatrician did order lyme titers but my son tested negative for both the ELISA and Western Blot. I want to say that I took my son to the doctor the same day he discovered the tick, which was three days after being bitten. He had gone on a trip organized by his college to go paintballing. My son was under-treated with ONE 200mg doxycycline pill. Even though I called the pediatrician after we picked up the med from the pharmacy, questioning whether one pill was enough to prevent lyme, I was told YES. When the true answer is a resounding NOOOO!!!
By this time I had already purchased a pulse oximeter and figured out on my own that my son was experiencing symptoms of POTS. I took his pulse as he was sitting, and then upon standing....and wow! Upon standing this poor kid's heart literally raced to over 120 bpm within FIVE seconds!! No wonder this boy had become practically bed-ridden. He was afraid to walk around, go anywhere, do anything, for fear his heart would burst or simply stop. He was afraid that even the mildest activity would cause him to drop dead!
He stopped driving, he was not going out to see friends. He had me change his college classes from on-campus to online. Even so, he still failed his classes this semester. He could not concentrate and he was constantly aware of the sensations in his chest, in his heart.
I finally talked to enough people and figured out I needed to get my son to a Lyme specialist, an LLMD. So I got him an appointment for November 14th. Upon reviewing my son's medical record and seeing he already had a history of mono, Epstein Barr, cat scratch fever/disease, and seeing the photo of the tick bite we had saved in email, the LLMD made a clinical diagnosis that my son was likely experiencing a tick-borne illness, a co-infection, possibly bartonella....which the bite could have re-infected, or re-activated a bacteria that was already in his system. We will never truly know though because, I had $2,800 worth of blood work done on this boy 3 Friday's ago and at the follow-up with the LLMD last Friday, we were told he STILL TESTED NEGATIVE for EVERYTHING and yet, we KNOW he was indeed infected by something as evidenced by the fact my son has responded so well to treatment!
This is what the LLMD did to treat my son: first and foremost, he believed us about the POTS, took his pulse going from sitting to standing and saw that he did indeed have POTS. The LLMD put him immediately on antibiotics (first three days were probiotics only): minocycline 100mg 2x/daily, 1 bactrim tablet 2x/daily & plaquenil 200mg 2x/daily. He is also taking 5000iu vitamin D daily, & two NAC supplements daily to protect his liver. He also told him to adhere to a diet of no soy, no wheat, no gluten & no sugar.
Within a month of this regimen, my son no longer has the racing heart rate! And at the follow up last Friday the LLMD's nurse practitioner said my son is to continue the antibiotics for another month, and she is expecting his shortness of breath to improve as well.
This is a miracle as far as my family is concerned, a complete and total 180 from what we have seen this boy going through. He was declining a such a fast pace, the elderly people I care for had a better quality of life. My son is now driving again, out with friends and finally LIVING his life again, instead of worrying that he is going to die. Our LLMD saved my son's life and I think it's just awful what these doctors have to go through just to be able to to the right thing and help people. If I continued to listen to the doctors in the traditional medical community, I don't even want to *think* where my son would be right now.
I hope this helps someone out there who is searching for guidance, looking for answers....I know what it feels like and it seems like the info is not necessarily complete a lot of the time or not very recent. I am here to say the my son's most severe POTS symptoms have resolved with treatment for Lyme - even though he tested negative! The problem is with people like my son, people whose immune system is not necessarily that strong, they will not produce the antibodies necessary to generate a positive result on those tests. Thank Goodness there are these doctors out there who do know how to treat this!