Hi everyone, my now 19 1/2 yr old son was officially diagnosed with POTS in October 2013. He had been having the symptoms for months however. In April of 2013 he was bitten by a tick. Three days later on April 15th, I had him in the pediatrician's office. He was prescribed ONE 200 mg doxycycline pill.
A few weeks later he was noticeably more lethargic and experiencing air hunger, clutching his chest saying he couldn't get deep enough breaths of air. By July 2013 he had a full-blown severe panic attack, complete with numb feelings in hands and feet, fingers locked/frozen in fear?, racing heartbeat, thought he was going to die. It was horrible. The ER doctor had no interest when told he was bitten by a tick in April (my husband told me to tell the ER doctor).
Follow-up appointment with the pediatrician revealed good vitals, nothing of note, although we did explain his symptoms. The doctor said he had depression and anxiety, needed antidepressants and a therapist. We left that appointment very disappointed, my son felt like no one was listening.
By August 2013 my son's symptoms were non-stop. Racing heartbeat going from laying to sitting, sitting to standing, standing to walking. This caused him to not want to move too much for fear his heart would literally burst. He begged me to change his college classes to online (from on-campus). He was afraid of what walking around campus and up and down stairs would do to him. He was constantly feeling like he would die from whatever was going on with his heart.
Throughout the month of September 2013 my son struggled with more panic attacks and tried to not complain, tried to talk himself into trying to stay calm, etc. He couldn't deny though the cardiac pain and pressure he was feeling, the constant air hunger and the rapid racing heartbeat along with how HARD his heart was literally pumping. There were times I felt it and it literally brought me to tears. I began to feel as hopeless about the situation as my son did.
By October 9, 2013, I wrote an email to his pediatrician begging her for a referral to a cardiologist. She got him an appointment right away, and I was grateful for that. But the cardiologist was useless. We explained my son's symptoms of POTS to a T, and she literally did NOT LISTEN AT ALL. She already had her mind made up that my son simply had depression and anxiety and that he had "other issues". She did an EKG and she said he did not have heart block, nor did he have any other issues otherwise detected by an EKG. My son looked so defeated when we left that appointment. He felt like nobody believed him and that because of all this time being wasted trying to get answers, that he may literally lose his life because of it. He constantly felt like he was living on borrowed time, that he could drop dead at any moment :(
By the way, lyme titers ordered by the pediatrician in early October 2013 all came back negative - both the ELISA and Western Blot.
November 14, 2013, I finally got my son in to see a LLMD. 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.
27 days later on December 20, 2013, my son's POTS symptoms have almost totally resolved. No longer experiencing racing heartbeat upon standing! He is still however experiencing shortness of breath, and deep, heavy sighing to get more air. The follow-up appointment today was good. We saw the LLMD's Nurse Practitioner. She said he is to continue abx for one more month, and is hopeful his breathing issues will clear up by then. After that he is to continue with herbal supplements to support his immune system.
Son under-treated for tick bite April 15, 2013
Severe Panic Attack mid-July 2013
Full-blown Postural Orthostatic Tachycardia Syndrome (POTS) by Oct 8, 2013
Finally see LLMD on Nov 15, 2013
POTS symptoms mostly resolved by Dec 20, 2013
Still dealing with shortness of breath