Im 66 and apart from atrial fibrilation., which was successfully treated by cardiac ablation in 2016, I've always been in good health. Three years ago my partner and I bought a place in beautiful rural Scotland where we spend a lot of our time. In August 2019 I suddenly developed a catalogue of unusual and debilitating symptoms which have ruined my health. Heart pounding, night sweats, fatigue, dizzines, joint pain, depression, etc. I'm convinced it is Lyme disease. I was oblivious to the dangers of ticks in the Scottish countryside. I'd found live ones on my clothing and even on my bed sheets and on one occasion even picked one off my inner thigh during my morning shower which had obviously been attached all night. I've had batteries of blood tests, including for lyme, which came back negative, ECGs Echo, chest Xray, etc., etc. All returned as normal. After researching the dangers and symptoms of Lyme, however, I'm absolutely sure that I have either it or some other tick bourne infection(s) with similar symptoms. The test used for Lyme is notoriously unreliable and my negative test result means that the NHS and my doctor in Manchester refuse to accept or even pursue it as a possibility and I am left in the impossible situation of debilitating symptoms and wosening health with no prospect of help. The most distressing and worrying symptoms for me is being woken every night without fail by a pounding heartbeat, drenched in sweat with an intense, frightening pressure in my chest that lasts about half an hour and repeats throughout the night, putting my heart under tremendous pressure. It was the first symptom of this illness and has continued throughout and cannot be attributed solely to anxiety, as my GP has suggested. I don't know wear to turn for help.
Undiagnosed Lyme Disease: Im 66 and... - British Heart Fou...
Undiagnosed Lyme Disease
In some ways your symptoms sound similar to fibromyalgia. (A friend of mine was diagnosed with it a few years ago) Maybe worth looking it up on nhs site
Yes, I've considered Fibromyalgia because of the body aches and discomfort but it doesn't explain some of the symptoms I've been experiencing. Although I didn't mention it earlier, one of the most distressing symptoms has been all over itching. It's most intense on scalp and face with stinging skin, paresthesia and electric shock sensations which randomly shoot through my feet and face. I can only describe it as crazy!
Have you checked in with Lyme Disease UK? The site looks pretty up to date, and informative. I imagine they would take queries like yours.
Let us know how you get on, it would be useful to know.
Hi Kristin
I'll certainly take a look at Lyme Disease UK and let you know how I get on. Thanks
Bill
Hi Bimclsh, I too have very similar symptoms to yours. I was bitten whilst out hiking over 10 years ago, on my lower right leg. I developed a circular rash, but not bullseye. I asked my doctors, on more than one occasion, about Lyme disease but was dismissed. My symptoms have gradually worsened over the years and I developed SOB on any exertion with spiking BP. I used to walk 25 miles plus a week, mountains incl., now I have done well if I can do 3 miles on the flat. In the last 12 months I have now developed neurological symptoms for which I am awaiting testing. In desperation I sent a blood test to Armin labs in Germany, via AONM in the UK. This came back positive for two Lyme disease co-infections but negative for Lyme.
Hi laketrekker.
Yes, I've considered the possibility of other tick bourne infections such as babesiosis and bartonellosis as possible causes but haven't been tested ...yet. If you don't mind me asking, are you on any meds to treat the co-infections?
I am taking herbal supplements, as per Stephen Buhner's recommendations (he has written several books on the subject), as doctors are not prepared to prescribe long standing antibiotics (which I do not necessarily want to take either).
Afraid I'm in the same position. I was bitten by a deert ick in the 1980s in America; had the very typical bulls eye rash on my leg when I came home. I just happened to see a dermatologist at the same time who had studied in the USA and knew about Lyme. It was unheard of here back then and he immediately did the western blot test. Unfortunately it was too soon after the bite so I didn't show antibodies and it came back negative. I was later diagnosed with fibromyalgia instead of Lyme. Years later I asked for another test which was also negative but like you I know those tests are notoriously bad. I've now been told that even if I got a positive result, they wouldn't know how to treat me because there has been no research on the very long term effects of Lyme or on treatment after 40 years. I'm still convinced I have Lyme rather than Fibro but as you know it's very good at hiding and there's no alternative but to just treat the individual symptoms. I just wish I'd taken a photo of that bulls eye rash at the time.
Wow..40 years! It's gradually dawning on me just how intractable this can be. Also I'm seeing how doctors are obsessed with individual symptoms as opposed to putting 2 and 2 together and recognising the obvious. Fibromyalgia isn't an actual illness, it's a symptom of something else. In my case I've been referred to a dermatologist because I'm getting severe itching and sores on my face and scalp, which I know are related to this. To a urologist because of blood in urine & semen which I know are related ho this and to a cardiologist because of heart issues which I know are related to this. They all started at the same bloody time! Why the Hell is that too difficult to figure out?? Sorry for the rand guys!
Completely agree. FIbro is a collection of symptoms usually thrown out when they have tested for everything else and are then stumped. Yes, pain in the specific trigger points is diagnostic but not the ultra sensitivity to drugs, to aromas, the itching, the neuropathy, the night sweats the sudden overwhelming tiredness. I have symptoms that are specifically diagnostic of Lyme but because the Western Blot tests says negative they won't even consider the other tests or the fact hat long term, Lyme can hide from tests and only show up when you are having a bad flare which can affect pretty much any organ. If it's not simple and under their noses, they don't want to know. Treat he itch with calamine, suggest a cool pillow for the sweats but never put them all together. YOu need to find someone who is really experienced in Lyme, not just any old endocrinologist who just does a test. Someone who really understands it. Good luck. I haven't found one. I'm certain if I'd taken a photo of that bull's eye rash they would immediately jump and diagnose Lyme but after 40 years they just say "We don't know how to treat such long standing Lyme. I've contacted Lyme UK and many American specialities to no avail.
Hi, Thirty four yrs ago I had the bulls eye rash but GP did not recognise it-I didnt either, she just said 'oh that looks red and fiery, just gave me two lots of different creams that was not a lot of use.- I recognised it later when I did the research but of cause by then I was told I did not have Lyme disease even when I had positive tests for Lyme from USA and German Lab-they refused to accept the results- told IDS I had had Lyme 25yrs then-he turned round and said 'you could not have Lyme disease 25yrs you would be dead'. Afraid you will get very little help on NHS and it is my opinion that Lyme is a manmade illness like AIDS. Prof Donald Scott and his son did some brilliant research and found out the USA gov/scientists had adulterated thousands of mosquitoes and let them lose in Canada-that I believe it was where Chronic fatigue syndrome was first diagnosed-in UK there was an outbreak in Royal Free hospital and that was named Myalgic Encephalomyalitis (ME). A doctor at this hospital years later re-examined the bloods that he had and discovered it was not ME it was Lyme disease. It is only in later years we have recognised it as Lyme disease. Governments do not want you to realise Lyme is caused by their experiments-there would be an outcry.
Have you had your vitamin B12 level checked, along with folate and vitamin d3?
Paresthesia and the ‘electric shocks’ can be one of the many neurological symptoms of b12/folate deficiency and as b12, although only needed in minuscule amounts, is vital to so many functions in the body it is worth investigating.
Good info on the b12 deficiency website.
Hi there, I've just come across your post. My partner who is 67 contracted Lyme disease around 6 yrs ago. He nearly died and only through sheer determination and research has he pulled through. We found a clinic in Beverley nr hull called The well one clinic. A doctor there called beryl beynon (I'm not too sure of the spelling of surname) is an expert in Lyme's and treat my partner with "rife treatment" and it helped him so much. The NHS didn't want to know and the test was negative but a co in Germany gave us a positive result ! He still suffers with numbness, pain and tingling in the top third of his feet which we can't seem to get any help with ( the doctors are useless) and we,ve tried all-sorts. Any advice from anyone reading this would be very welcome. Look up beryl at the well one clinic and good luck . X
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