C’s story of living with Lyme Carditis

Dear Dr Gupta, 

I saw your post on Facebook regarding wanting to hear from patients with Lyme disease. I thought I would get in touch as I think it’s important to raise the profile of Lyme disease, and my initial contact was with cardiology which might be interesting for you.

Clinical history:

I have a long history of being bitten by ticks in Sweden, where I have received tick bites dozens of times over the years. Around 2011, I had a strange summer flu and a numb forehead, but these symptoms flared a couple of times and then passed. I wondered about Lyme disease at the time, but did not seek medical treatment.

In the intervening years, I had some other strange and possibly related symptoms, mysterious chest pains, tinnitus and a frozen shoulder. My chest pains were particularly unusual, and would pass provided I exercised regularly, so I again dismissed the symptoms as maybe angina but it didn’t completely fit. It was a soreness bang in the middle of my heart.

In April 2016, my chest was getting tighter and exercise was no longer working. I resolved to see my GP. However before I got my appointment, I went to A&E with a suspected heart attack as my chest was very painful and sore, and I had trouble walking. However my ECG and troponins were fine and I was sent home after a few hours.

My GP was most dismissive and I presumed she thought it was a panic attack.

However, my symptoms got worse again and I was in A&E again. This time my chest pains were prolonged and I could hardly walk. I also felt extremely unwell and nauseous, and has diarrhoea. I did not have a temperature, common with Lyme disease. My chest wall was on fire. I was given pain killers, and had an appointment with cardiology for a stress test which proved negative.

I recovered from my episode, even though my GP gave me no answers. However the symptoms would keep coming back and I was unable to exercise. I would become periodically very unwell, which is consistent with Borrelia’s 21 day cycle although I did not know this at the time.

I returned to my GP and had to really push for a consultation, who perhaps still thought it was due to stress or was musculoskeletal. (In fact, having severe undiagnosed heart pain that is being dismissed is indeed very stressful…)

In the meantime, I did some of my own research, as I believed I had infectious myocarditis. I eventually stumbled upon Lyme disease. I asked my GP for a blood test for Lyme disease, she made some enquiries and eventually agreed. My blood test results came back positive (for EIA and also the Western Blot), just in time for my cardiology appointment with Dr R in the Horton General Hospital.

A heart echo also found a murmur in my mitral valve, which is consistent with infection and I had ST abnormalities on my ECG

Dr R diagnosed me with Lyme myocarditis, on the basis of my blood test and infectious episode. I was treated at the Churchill hospital under the care of Infectious Diseases.

I presumed that this would be end of my health problems, but unfortunately, this was not the case.

My ID consultant was quite sceptical about Lyme disease, and was surprisingly confrontational even though I had a positive blood test. They also changed my treatment from 1 month IV ceftriaxone to 2 weeks of doxycycline. I thought this seemed a little short.

I responded well to the doxy, but at the end of the 2 weeks, I was still responding strongly to the treatment – a Herxheimer reaction perhaps. I pleaded with the ID consultant to continue treatment but I was ignored. After coming off the doxy, I experienced a lot of extreme heart pain and felt fatigued. Over the next few days, the “good” pain became very sickly and I felt awful.

I was put back onto doxycycline for another 2 weeks, and I immediately became much better again. After stopping this course of antibiotics, I again started to get much worse, got severe insomnia, and quite severe neurological issues. My whole skin was crawling, my head and face and ears were numb, and eventually my head started to crawl as if bees were in my skull, and my mind would start to idle.

I was put onto ceftriaxone for 3 weeks, which definitely helped. I got an extremely strong reaction in my heart, perhaps another Herxheimer reaction.

I believe that if I had received adequate, and open-ended treatment initially, then perhaps I would not have had any neurological issues. I started to suspect that mainstream medicine does not really know how to treat late stage Lyme disease.

After coming off ceftriaxone, my neuropathy returned quite strongly within a few days.

I had a final follow-up appointment for Lyme disease, where it was made clear to me that  there was no more treatment available, and at this point I decided to seek private treatment. Some private doctors treat Lyme disease for longer periods with antibiotics, and in my case, I still seemed to be responding to antibiotics. Even if antibiotics were not a cure, they offered me a normal life.

I also had some private blood tests for coinfections, which showed anaplasma, chlamydia pneumonia as well as a low CD3/CD57 score which is a specific immunological marker associated with chronic immune suppression caused by Lyme disease. I believe that the immunosuppressive nature of Lyme disease, and coinfections, are vastly underappreciated by mainstream medicine.

Over the next year, I was definitely responding to antibiotics. In particular, I got a strong reaction in my heart when I started to use cefuroxome axetil, months after ceftriaxone. I was mostly well, but symptoms would return after stopping antibiotics.

I don’t believe the effect of antibiotics was a placebo. Different antiobiotics definitely would do different things.

I had a follow-up cardiac magnetic resonance, CMR, which did show scar tissue in my heart consistent with infection.

Nowadays, I still have symptoms, and self-treat with antiobiotics which I pulse. I am now down to antibiotics 2 days out of 7, and hope to reduce this further. I order my medications from abroad, and use various commercial services like Medichecks to ensure my liver and kidney are still healthy. I have no support from the NHS whatsoever.

I also treat with various supplements, which are both anti-inflammatory and antimicrobial. They seem quite helpful, things like turmeric, cat’s claw, Allicin Max and andrographis.

Concluding remarks:

Around 20-50% of Lyme disease patients go on to develop persistent symptoms, known as PTLDS. I believe that these patients have been whitewashed from history, where there is still a prevailing view that current treatment guidelines are scientifically based and completely effective. There is no scientific basis for that claim. Many studies, most recently in rhesus macaques, show that viable Borrelia burgdorferi bacteria, the causitive agent of Lyme disease, can be retrieved from many parts of the body, including the heart, from the animal even after prolonged antibiotic therapies. Other studies show that in vitro, only very specific antibiotic combinations can eradicate Borrelia burgdorferi. That combination is daptomycin, doxycycline and cefuroxime. Doctors who treat late stage/chronic Lyme disease using daptomycin report positive results.

Another vastly underappreciated aspect of Lyme disease is its immunosuppresive nature. Murine studies have shown that mice infected with Borrelia have a damaged immune response and are unable to form the correct antibodies. Vaccines don’t stick. This may explain why the serological tests for Lyme disease don’t work in chronic cases. Is the damage to the immune system reversible? Nobody knows.

The evidence supporting all of these “alternative” treatments for Lyme disease is still very weak, however I believe they can be somewhat effective and patients need to feel their way forward. For me, antibiotics work quite well but they don’t for everybody, and again the scientific evidence is weak.

Unfortunately, mainstream scientists have been very slow to acknowledge the failures and limitations of their tests and their treatments, and this has come at the expense of patients. Lyme disease is an extremely unpleasant condition to have to live with, and patients have has been dismissed with “subjective” or “medically unexplained” symptoms for too long, and have almost been accused of faking the whole thing.

Thank you for reading,

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