My son developed a heart condition due to being under-treated after a tick bite. He was bitten in April of 2013. Three days later we finally discovered this bite - it had become necrotic at the site. I got him into the pediatrician immediately that day. He was treated with ONE 200 mg doxycycline pill. THAT WAS NOT ENOUGH to prevent the misery my 19 yr old son ended up going through. Even though at my husband's request I called the pediatrician that day after we picked up the med at the pharmacy. I questioned, "IS THIS ONE PILL ENOUGH TO PREVENT LYME?" I was told YES. I was a FOOL to believe that!!! *sigh*
Anyway, by the end of May, when he turned 19, he was starting to feel very, very lethargic. Deep, heavy sighing all the time. Short of breath, can't catch his breath.He had all he could do to drag himself to his college classes on campus. He finished classes, but by July he ended up in the E.R. with a severe panic attack. This son of mine has always been the picture of calm, cool, collect...he has NEVER been a nervous or anxious person, ever. Symptoms of the panic attack subsided soon after we arrived in the ER. So we went home with no answers, even though my husband told me to tell the ER doctor, "Tell them he was bitten by a tick in April". My husband had found out (through google of course) that one of the causes of a panic attack is lyme. So he was pretty convinced this was the culprit. I don't think I was necessarily convinced myself at that point.
So we followed up with the pediatrician in August, because my son was still - even as we left the ER that morning - convinced *something* was definitely wrong with his heart. He did not feel comforted at all when the ER doc told him he was fine, "it was just anxiety". He did not feel comforted after the follow-up with the pediatrician when she checked his vitals, and was told that maybe he should consider anti-depressants and to see a counselor. (This is because my son had previously had issues with over-exercising and extreme dieting. So I can see how she may have initially attributed these things to that.) After that appointment, however, my son was still adamant that he needed help for his heart, and that precious time was likely being wasted getting no answers.
He made it through the month of August, but the entire time was feeling his heart skipping beats, palpitating, racing whenever he would go from laying to sitting, sitting to standing and standing to walking! He would be clutching his chest and fearing he was going to die! Trying to calm himself through his panic attacks, as he felt guilt over the mounting medical costs :( Seeing this was sooo distressful for our entire family! Not to mention my poor kid! He begged me to change his college classes from on-campus to online (this is NOT my kid!!!) So I took him again to the pediatrician and once again told he was fine, vitals good. Yet he still kept feeling cardiac pain and pressure. He tried to tell himself, or convince himself, during these episodes that this was all in his head and it was not rational that he was feeling this way and he tried not to complain.
Then by October 9th, I sent his pediatrician an email BEGGING for a referral to a cardiologist after spending an all-nighter up with my son, both of us in tears over the fear he felt with regard to his heart issues. It was awful. He was talking to me as if each day could be his last, every breath could be his last. He was bed bound. He dared not move unless absolutely necessary (bathroom, eating, etc) Not able to do his schoolwork. Failing his courses. Quality of life was terrible. To the pediatrician's credit, she got the referral in quick and we got him seen almost immediately. She also ordered bloodwork for Lyme titers. (Which he tested negative for) Guess what? I paid almost 700 dollars to be told his heart was fine according to the EKG. I asked her to check for heart block as that was something I had found out on the internet was a cardiac issue due to lyme. The cardiologist said there was no heart block, no heart disease and she also alluded to a mental issue that required treatment other than what she was able to do for him. She did not listen to my son when we explained his issues with his heartbeat whenever he changed position. We left that appointment feeling like we were in the Twilight Zone. My son said, "Mom if I don't get help I need, I am afraid I am going to die!" This boy felt constantly as though any day he would 'wake up dead'.
The most interesting part of this whole thing is that before we finally ended up at this appointment with the LLMD, my husband and I had done so much research on the symptoms my son had, that we finally recognized his issue as Postural Orthostatic Tachycardia Syndrome, a.k.a. POTS. WHY DIDN'T THE CARDIOLOGIST RECOGNIZE THIS??!!! We explained these symptoms exactly as you would find POTS described in hundreds, if not thousands of webpages in a google search!!! So weeks prior to the appointment with the LLMD, we purchased a pulse oximeter at the local drug store and conducted a simple test on my son. Had him sit and took his pulse, it was normal. But upon standing his pulse RACED to over 120 bpm! EVERY TIME!!!
After that yet another disappointing appointment, I started asking around, asking questions, talking to more people and found a LLMD in our area. I made an appointment for November 14th. It was the soonest appointment I could get. My son doesn't have insurance, and even if he did, this practice does not take insurance. I had already been paying out of pocket for ER , PCP and cardiology with no answers. We finally get into that appointment. He looked over my son's medical record, saw that my son had a history of Cat Scratch Disease, mono, Epstein Barr and saw the photo of the tick bite my son had (I had saved it in email), he made a clinical diagnosis and prescribed antibiotics to begin treatment right away.
He said that the tick bite no doubt re-activated the bartonella in his system (cat scratch fever/disease) and that his immune system couldn't lodge the immune response required to produce a positive result on the lyme titers. First my son had to take probiotics for three days and then he began a regimen of three different kinds of antibiotics: minocycline 100mg 2x/daily, 1 bactrim tablet 2x/daily and plaquenil 200mg 2x/daily. He is also taking 5000iu vitamin D daily, and two NAC supplements daily to protect his liver. He also told him to adhere to a diet of no soy, no wheat, no gluten and no sugar. (My son later said during the past month that the times he deviated from that diet, he did feel noticeably worse)
So we presented this information about
POTS to the LLMD. And this issue was something he was definitely already knowledgeable about
, which made me feel confidence in him. My husband asked the LLMD to please take my son's pulse as he sat and then again upon standing. When my son was sitting his pulse was normal (70's) and upon standing, within FIVE SECONDS, his pulse shot up to over 120 bpm! This is what his heart had been doing at home and it was doing it at the doctor's office too. The LLMD turned around, looked at us and said, "Yup, that's POTS."
After we left the FIRST APPOINTMENT with the LLMD, on the way home in the car, my son said to my husband & me, "I have basically come to terms with the fact that too much time has been wasted and that I probably am going to die from this, but I want to thank you for trying so hard to get me some help." :(
After he began his antibiotics, we were waiting for him to experience his herx reactions. The first week went by - nothing. Second week, nothing. We were beginning to wonder if he even would have any herxing at all. Then 2.5 weeks in he did begin to feel cardiac pain, pressure, rapid heartbeat while sitting on his bed...a constant 100 bpm for well over a half an hour. I was so glad I was off of work that night, I stayed with him and comforted him. He also had headaches that were not that bad, random quick sharp-shooting pains in his chest and in his head. His feet were sore, he said it was a feeling that was difficult to explain. He also experienced a cool, menthol, windy, minty kind of feeling behind his eye! But that feeling did not last long. His herxing occurred during his third week on antibiotics. By the end of the fourth week, he said he was feeling much better.
Last Friday we took him to get his bloodwork ordered by the LLMD. We had to pay over $2,800 up-front, in-full before LabCorp would take ONE DROP of his blood! After we left LabCorp, as we got into the car, my son said, "Mom, I don't know if it's my imagination, wishful thinking or what but it seems like my heart feels better. I mean, don't get me wrong, I still feel like crap but my heart doesn't seem to be racing or pumping as hard as it usually does." On December 13th, the minute we got home we took his pulse; it was 70 while laying down, 75 and back to 71 while sitting, up to 90 then back to 80, 85, then back to 92 bpm!!! Normal!! I cannot remember the last time I was that happy!
Well today was his follow-up appointment since beginning his treatment about
a month ago. Antibiotics will continue as they have been for another month, and then another follow-up appointment.
Guess what his blood lab results showed? NOTHING! He tested positive for NOTHING! The Nurse Practitioner said that the fact he has been responding favorably to treatment is proof-positive he was infected with something. That he is part of the 65% who do not test positive on these tests, despite obviously dealing with an infection. THANK GOODNESS he was able to get a doctor to make a clinical diagnosis and effectively treat him. I shudder to think where my boy would now be, had he not gotten treated when he did.
THE GOOD NEWS: My son's POTS symptoms have nearly completely resolved with this treatment! He was on antibiotics for exactly 27 days before he truly felt a difference with his heart issues. This is a MIRACLE as far as I am concerned. As far as my son and I were concerned, and the rest of the family too, this boy looked, acted and felt as though he was literally at DEATH'S DOOR. I know my constant prayers couldn't have hurt, but this LLMD has saved my son's life, his quality of life...I practically broke down today (Dec. 20th) in tears of thanks when we saw the LLMD's nurse practitioner at the follow-up today.
TODAY when we left this appointment (after a month of treatment), my son said, "It feels good to finally feel 80% back to normal. I think I probably will be able to go to college again in the fall."
He is still feeling short of breath, he is still sighing deeply often, but we are *hoping* this too will resolve within the next month of treatment. The NP gave him the go-ahead to finally begin exercising again, as tolerated, he needs to listen to his body. He will start on the recumbent bike and work on small fitness goals and work up. He drove his car today for the first time in a longgg time. He will see a nutritionist next month and after his abx are finished, he will continue on an herbal supplement regimen to help keep infection at bay.
Post Edited (zachsmom) : 12/20/2013 5:20:38 PM (GMT-7)