This is my first post in this part of Health Unlocked after 15 months in the British Heart Foundation section. In 2014, I had a nasty insect bite when working next to our Atomic Weapons Establishment (!). This was more a chew than a tick bite but I had symptoms similar to Lyme Disease (exhaustion, vivid dreams, despair).
A series of tests noted fluctuating blood levels, usually within ranges, though Serum Ferritin was at 21u/gl (reference range 30-400). Eventually I was prescribed Ferrous Fumarate and in the next three years the level slowly increased to 54 in February 2019 and to 108 in January 2023. Lyme itself has never been diagnosed in various tests, including a recent one.
Beer and sugary drinks triggered symptoms, so I gave these up and enjoyed good energy, though with very minor symptoms in most summers - until August 2022, when I became exhausted again.
In 2023 Severe Aortic Stenosis was diagnosed, followed by an operation in July to replace a heart valve . In this period my energy levels continued to fluctuate, from deep exhaustion to my being able to walk for six hours one week before the operation.
The operation was initially very successful, and by late August I felt almost back to normal. But in early September I felt exhausted again. My heart surgeon and a gastroenterologist could find no reason and last November was referred to the Haematology Department at my local hospital. Now I've returned to having exhaustion, vivid dreams and despair.
Thoughts would be welcome about Lyme eventually leading to heart problems and making itself evident after nine years.
Written by
Taviterry
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I can understand your concerns, I'm 75 myself. Yes, Lyme can lead to heart problems, and yes, Lyme can stay hidden for years and years and then suddenly jump out and show up with all its nastyness.
I have personally decided to not go for all sorts of tests for 1) I have to travel and that's a problem for me, and 2 - those tests are not covered by my insurance - I'm Dutch and live in the Netherlands - but most importantly, they are not reliable, give way too many false negatives, so they won't make me wiser than I already was.
Soooo I've started on Buhners core protocol, totally based on herbs and reinforcing my immune system, hoping that in due course my body will still be strong enough to fight the Lyme itself.
IF you do have a doctor who'd be willing to try and fight it with different antibiotiocsd, I'd say go for it, but don't forget to use probiotics, that can make a difference. Still, I have new hope now I started the protocol, and will see what it does for me!
Thanks for your reply. Sometimes I'm so tired that getting to the big hospital six miles away is a challenge! I've called an ambulance twice because I doubted that I could get from the entrance to A & E; last time the excellent driver had to go hunting for a wheelchair, of which there was a shortage.
Ten years ago I didn't have much luck with several of my GPs, though they did prescribe Doxycycline. I discovered a Lyme expert 30 miles away who'd briefly run an NHS clinic in Winchester (the New Forest nearby being bad for ticks) until the health authority withdrew funding because so many patients were coming from outside its area. He then joined a small private practice, so I booked an appointment there, only to turn up to find he was at Porton doing lab research, fobbing me off with a lady doctor; within ten minutes my heart had sank when I realised she knew very little about Lyme - £150 wasted.
My latest bloods aren't that bad, apart from a couple suggesting CARDIAC PROSTHESIS-RELATED HAEMOLYTIC ANAEMIA, and they aren't that irregular, certainly not enough to fully explain my symptoms. After an excellent initial assessment in March, I've only had two somewhat rushed eight-minute telephone conversations with Haematology (though I'm paying all of £60 for a longer telephone session with a haematologist in Poland next week). Eight years ago I had asked my GP if it was worthwhile my seeing someone in Haematology, and he said no ...
Your journey sounds challenging, especially with the persistent exhaustion and fluctuating symptoms over the years. It’s good that Lyme has been ruled out, though post-infection fatigue or another underlying cause could be contributing.
With Severe Aortic Stenosis and a recent valve replacement, it’s not unusual for energy levels to take time to stabilize. Improved iron levels are encouraging, but lingering fatigue is still possible as your body adjusts. Working with a hematologist and perhaps an infectious disease specialist might help, given your history with the bite.
It’s great that avoiding beer and sugary drinks helps. Any other lifestyle adjustments that seem to impact your symptoms? Wishing you relief and steady progress!
T hanks, Janice. I've just had results from a Liver Function Test that show that my ferritin levels, having been only 82 in March, when I was feeling good, increased to 564 (range 30-400), following an iron infusion in May. So having gone from boosting my levels with iron supplements, I'm now avoiding iron-rich foods! And I've just discovered that Vit C supplements are not a good idea because they help the body absorb iron ...
It appears that my red blood cells are dying prematurely, so adding to my ferritin levels - which are not easily lowered! (Draining some blood appears to be one way.)
The session with the Polish haematologist helped up to a point, though he suggested I ought to be checked for Non Alcoholic Fatty Level Disease because of the high ferritin. I had my doubts, as two other blood results more indicative of NAFLD have always been median, and my GP immediately ruled it out. (Credit to her, she contacted me within hours of my latest results becoming available to discuss the couple of high readings.)
I'm due another online consultation with NHS Haematology in early December (preceded by more blood tests) and I'm hoping they might prescribe something to make my red cells live longer. But having been unimpressed with previous encounters, I have to admit that hardly any of my blood results are cause for concern and can understand why I'm low priority.
It sounds like you’re navigating quite a challenge with ferritin levels following your iron infusion, especially with the delicate balance between supplements and iron intake. It’s good that you’re staying informed about factors like vitamin C and consulting with your healthcare team, as it can be tough to manage high ferritin and iron absorption. The upcoming NHS consultation might offer insights into red blood cell longevity, potentially easing ferritin concerns over time. In the meantime, kudos to your GP for the proactive approach and quick feedback on your results!
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