TOUCHED BY LYME: When Lyme disease affects the heart
(Book review) Gone in a Heartbeat: A Physician’s Search for True Healing, by Neil Spector, MD.
Neil Spector was a seemingly healthy physician living with his wife in Florida. One day, he experienced what appeared to be textbook symptoms of a heart attack. Erratic heartbeat, chest pressure, pain radiating from chest to neck and jaw. Except all the tests the emergency room gave him turned out “normal.” He wasn’t having a heart attack, his doctors said. They chalked it all up to stress, suggested he learn how to relax, and sent him on his way.
Spector continued to have troubling symptoms. Often, his heart pounded too fast. Other times, way too slowly. Sometimes, without warning, he’d fall to the ground. He had extended periods of bradycardia, when the heart doesn’t pump enough oxygen-rich blood throughout the body. Yet, the answer from doctors (even though Spector was also a doctor) was always the same: Nothing wrong at all. Just a little stress.
Gone in a Heartbeat: A Physician’s Search for True Healing, Spector’s gripping memoir, covers about two decades. It starts with those initial heart-related episodes. Then it progresses to stages where he needs a pacemaker, then an internal defibrillator, and eventually a heart transplant. It’s a riveting account of how this affects him, his wife, and their family. It’s also about Lyme disease.
Fairly early in the book, Spector recounts: I knew that something was blatantly wrong with me—and that it seemed to be getting worse—but I still had no answers….I was caught in limbo between what I was being told and what I knew in my heart was the truth.
In addition to heart problems, other bizarre symptoms come and go. Episodes of brain fog. Significant weight loss. Fatigue, malaise, fibromyalgia-like pain. Insomnia. Yet the response from his doctors is always: Don’t worry. It’s just stress.
After doing some research of his own, Spector wonders if it might be Lyme disease. His docs say no. There’s no Lyme in Florida, they say. Spector insists on a Lyme test anyway. Negative. He asks for a second test. Negative.
Several weeks after receiving a pacemaker, Spector develops arthritis in his wrists. Coincidentally, he takes doxycycline for something unrelated. To his surprise, his wrist pain goes away.
That gets him thinking. What can cause cardiac rhythm disturbances, arthritis, muscle pains and weight loss—and is helped by doxycycline? That brings him back to Lyme disease.
I made the mistake of calling several academic centers noted for their expertise in treating Lyme disease. I discussed my clinical situation and both lab results with several alleged experts in the field. Each had the audacity to make a diagnosis over the phone, based purely on lab tests, and agreed unequivocally that I did not have Lyme disease. …I should have said “baloney,” but I was much too sick at the time to deal with what I was hearing.
The days drag on. Symptoms continue. Eventually, he travels out of state to a doctor who accesses him more thoroughly for Lyme. She diagnoses him with it and prescribes 90 days of IV antibiotics. At the end of that period, almost all of his symptoms have cleared up. Except for his abnormal heart rhythm, called heart block.
For reasons not really explained in the book, Spector does not continue with Lyme disease treatment. He mentions having “completed” the antibiotics. But since he still has heart block, how complete is that? He never gets into the IDSA vs. ILADS controversy over longterm Lyme treatment, but I suspect that plays a role.
After his return to “regular” life, Spector’s heart capacity continues to diminish. Procedures and medications don’t help. Finally, after several years of this, he is told that a heart transplant is his only option for continuing on this earth.
Gone in a Heartbeat is a heck of a good read. Spector vividly describes the range of emotions he experiences. He includes poetry he wrote during his ordeal. He shares his letter to the family of the heart donor. He movingly describes the immense gratitude he feels for getting another shot at life.
However, as a reader with a particular interest in Lyme disease, I find myself yearning for more information about that. Spector treats the Lyme episode as if it ends with 90 days of IV antibiotics—case closed. I can’t help speculating that if he’d continued aggressive Lyme treatment, he might have headed off the need for a heart transplant. I can’t help wondering if spirochetes still lurk in his body, perhaps doing unseen mischief. If he were asking my advice, I’d recommend that he follow up with one of the top ILADS doctors for an evaluation.
I deeply hope for his sake that Lyme is indeed behind him. Yet, Google news alerts for “Lyme carditis” land in my email box with disturbing regularity, reminding me that this serious problem is often fatal. It’s not something to be ignored.
If you want more information about Lyme carditis and other heart-related manifestations of Lyme disease, here are a few links to get you started:
What you need to know about Lyme carditis (CDC)
Third-degree heart block associated with Lyme carditis
Heart complications of Lyme disease
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org. On Twitter, she’s @dorothyleland. (And LymeDisease.org is @LymeNews.)
I believe that the depth & frequency of Lyme disease is going to continue to grow by leaps & bounds. I had UC since the age of 17. In 2001, it became unresponsive to treatment. I ultimately lost my entire large intestine, & I believe that it was due to Lyme. I was not diagnosed until 2012, but the list of health problems continued to climb until I was treated for Lyme. This man lost his heart. I lost my colon. People are losing their lives.
I know a whole bunch of people who have lyme. My friend was treated for MS his whole life he is dying. It is so hard to believe that we have such hard-hearted people here in the US. And it is even sadder that these people make LIVING, GREAT LIVING on these poor sick people.
I’m living in Florida and I was not feeling well at all. Doctor’s here were doing this test and that and could not come up with anything. For awhile I thought I’m going crazy in my old age thinking that maybe I’m imagining muscle pain and weak- fowling down. Finally I flew to a different state to see doctor, he send my blood to lab in California and they said Lyme disease.
I got back to Florida and my doctor said no way- after changing doctors I had been 122 days on IV which helped and now I continue to watch what I eat, taking vitamins and get good night rest. Then I could reasonable well function.
My advice- keep looking for doctors that have proper knowledge and is prepare to provide help.
I am 50 yrs old. Have had lymes w 5 co-infections since age 9. I finally realized what I had 11 years ago after a lifetime of ills; Juv. Myasthenia Gravis age9, heart block age 25, MS age 35 Hysterectomy 25, 2 miscarriges and 2 daughters born with lymes who have seizures etc. There is a lot I didn’t add, but its not normal to be sick chronically I have been through hell and it too late for help now I herx out,too bad and have too watch my girls fight this nightmare from hell. If you think you have it and drs. pooh pooh it find a ILADS dr. the sooner the better! Fibromyaglia etc are all symptoms as is a child with a rare disorder that doesn’t make sense! Igenex is the best testing fac. this stuff is no joke and it can last a lifetime.
My daughter has been sick since the age of 15, she is now 27. Her heart was a mess. Being a cardiovascular nurse I couldn’t even count her heartbeats, the EKG said 160 plus and skipping every 2nd and 3rd beats. She later was diagnosed with Lyme disease that then went to the brain. The sad thing is,her family gave up on her including one that was a cardiologist. ticktoc.me
Francine, I am so sorry to hear about your daughter. I got sick at age 17, diagnosed with lyme finally at age 30, treated and did well for 4 years and back to the drawing board 🙁 I was an oncology nurse during the years I was well and one day when my heart went into an “episode”, a nurse put me on a monitor and my heart rate was 248 bmp. Valsava’s maneuver brought me down temporarily to 188, but went back up when I stopped. I’ve been having these episodes since 3 months after I became ill in 1996. My cardiologist believes it is SVT. I also get skipped beats, trigeminy, pvc, pac’s, ect. Once at work I went into a different rhythm that did not feel like the typical SVT, I believe it was A-fib. I was 35 years old at the time! I was very athletic until I got sick.My lyme went neuro two-three months after it affected my heart. I hope that your daughter is able to find a good LLMD if she hasn’t already and get some relief from these awful symptoms!
My 25 year old otherwise very fit daughter has been experiencing symptoms of chest pain, increased heart rate and blood pressure and decreased oxygen sat levels on exertion for about 5 weeks now. She is an RN on a busy unit and bustling around during her shift is enough to bring this on. She has had most every thing ruled out. She just had an echocardiogram that shows valve abnormalities and mild insufficiency. I wonder if we should look into Lyme disease?
Kerry S.
She should get tested if she hasn’t already been. Just keep in mind the tests are not very accurate.
Thank you for your compelling review. It would be really helpful to spell out in words, what the acronyms stand for. Very few articles do this. Especially considering how close these are, when the two are used together, it is is even more important. Thank you again.
I myself almost died from lyme carditis, and was saved by non profit organization http://www.spooky2.com ie rife frequencies … I would not be writing this if had not found this device, very grateful. More info http://www.spooky2-mall.com and facebook group learn how to use it ie Spooky2 blessings
It’s inexcusable that victims must face such push backs from cardiologists. I was diagnosed with carditis a few months ago by my LLMD. I’ve been to three cardiologists in which all three claim nothing is wrong with my heart.
The last cardiologist stated he saw no abnormalities on exam as well as my echocardiogram. Yet, the radiologist who drafted the report disagreed. Under FINDINGS- Possible Endocarditis. After the report was reviewed by the cardiologist his final summary concluded with no findings of heart infection. I was quickly dismissed after that.
It’s bad enough you feel as though your heart will fail you at any time but it’s worse when doctors refuse to believe you.
I have Lyme Disease I have been having issues with cardiac problems and have been pushed aside told by multiple Drs I need a psychiatrist these symptoms I’m having they document are subjective. I even was told by a infection disease specialist Dr there are no ticks in Va beach VA that carry Lyme disease the results must be false. The Drs refuse to retest Lyme lab values although I continue to be symptomatic I have only received the initial 14 day of doxy that was after only arguing with the Dr to please run the Lyme panel after months of odd neurological symptoms that caused multiple ER visits but I did have to demand and argue as he didn’t want to do the initial test he told me it would be to much of a hassle if I were to come back positive it would be easier just to give me antibiotics. I was positive . I am suffering like so many and I’m so disgusted by the CDC outdated BS guidelines and BS restrictions and insurance monopoly it sickens me.
We the patients are suffering and dying
Oh but let’s not forget those that donated blood that had Lyme disease as no one said anything and how many people received the donated blood?
You can get lyme disease and/or co-infections from insects other than ticks.
DON’T BELIEVE THE LIE THAT YOU ONLY GET LYME FROM TICKS!
I got mine from a spider bite and so did the Nurse Practitioner (trained in rheumatology) who is treating me. I went out of state for treatment in 2009 and the doctor didn’t think I had lyme because I didn’t develop joint pain right away – instead I had serious neurological problems with fever and encephalitis. Now 10 years later, it appears I’ve developed inflammatory arthritis with muscle/connective tissue pain! Geez, thanks Doc!
Doctors are incompetent when it comes to LYME unless they truly want to help lyme patients. Unfortunately, there aren’t many of those around. The rheumatologist I was referred to said I couldn’t have lyme because I didn’t get the typical bulls-eye rash (I got a massive bruise). Can you believe these numb skulls still think that’s how you diagnose lyme?! Sorry but I am so sick of these people who call themselves M.D.s.
All I can say is, thank God for the internet!! I (and probably thousands more) would be dead if we didn’t have this information resource.
Sometimes I think we all might be better off going to witch doctors.
P.S. The Red Cross told me NOT to donate blood if I have Chronic Fatigue, Fibromyalgia or Lyme, even if it is just suspected and not confirmed. Canada Red Cross will not take blood from CFS patients. What do they know that we don’t?
I truly believe I have Lyme disease. I have no insurance and need to know how to go about getting someone to believe me and get the blood test I need. This has been going on for years and now something else is happening to my body that has me worried. Help
I was diagnosed with Lyme disease in January 2017. I am about to start treatment for it. I have been to countless doctors that have tested me for it and missed it in Georgia. I have been sick for 7 years with all kinds of infections and been on enormous amounts of antibiotics and steroids. I have never been in so much pain in my entire life. I feel like my tissue in my body is on fire all the way to my bones. I don’t sleep, can’t digest food, have ibsd and diverticulosis. I am in the bathroom 15-20 times a day. I have been having these bouts of heart beating way to fast and bp going up and down. I don’t know if it’s my heart or the Lyme making my heart act funny. My heart goes out to anyone with disease.
I was severely ill with Neuro Lyme after a 3 hour walk in Pennsylvania State Park. I tested positive for Lyme 3 weeks after exposure and became extremely ill and incapacitated for 6 months on oral antibiotics. I did not recover until I was given IV Rocephen via a PICC line. I returned to work with a noticeably high BP which seem to resolve along with the other LYME symptoms. NOW, Three years later I ended up n the ER with lightheadedness, chest pain, severe headache and high BP. I now have LYME Carditis. The CDC produces literature comparable to a skeptical medical atheist. Instead of the saying “there is no God”, the CDC says there is “NO LYME DISEASE.” I am a nurse and I am extremely disappointed in the CDC with regard to their lack of research, knowledge and denial of LYME DISEASE.
Living the Nightmare of LYME DISEASE!! Thank you CDC for being soo incompetent!!