Is this Lyme disease?? Help greatly appreciated.

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Hi everyone, 

My situation is getting pretty desperate so I thought i'd ask the community for some help. 

Background:

- 25 year old male, until 8 weeks ago was in the prime of my life physically, going to the gym 3-4 times a week. I then had a huge unexplained crash one night after a gym session and I haven't recovered since. 

Symptoms immediately after 'crash'

Disoriented, strange vision, out of breath, belching/acid reflux, palpatations, confused, weak legs, full body shaking, barely able to stand, brain fog, malaise, derealisation, anxiety, unable to drive home. 

Symptoms the day after 'crash'

Extreme fatigue/malaise, headache/head pressure, stiff neck, unable to get out of bed for 3 days, flu like symptoms, unable to concentrate, particularly on moving images such as TV for long, poor short term memory. 

Symptoms in 6-12 months leading up to 'crash'

- Bad joint problems, medial knee pains, excruciating elbow pain to the point that I couldn't sleep for a few nights, ankle swelling/pain from running and foot pain (ball of foot) that hasn't healed. (I put all this down to over exertion).

- I have had a lot of psychological stress in the last 6 months, mainly due to running 2 businesses as well as full time job and hitting the gym a bit excessively, also had some relationship problems, I have however had CBT for all this, and while it has kept my anxiety at bay, the physical symptoms still persisted. 

- I noticed in the last 3-4 months that I was unable to follow conversations and had difficulty concentrating when people were speaking. 

Day-to-day symptoms now

- Severe fatigue that isn't helped by rest.

- Orthostatic intolerance (need to sit down after around 10-15 minutes).

- Headaches/stiff neck, upper back ache.

- Brain fog, difficulty concentrating, delayed processing of information.

- 'Payback'/post exertional malaise after mild exercise, I still have strength but if I do exercise properly it can take me 3-5 days to recover. 

- Lightheadedness/dizzyness, spaced out. 

- Joint pain, knees, feet, elbows. 

- Freezing cold feet.

- Chills.

- Stomach pains/acid reflux.

- Difficulty sleeping.

- Becoming angry/frustrated/depressed.

Reason for suspecting Lyme disease

- Around 18 months ago I got a large rash on my leg and fell quite ill, I thought it was a spider bite initially or a pimple that was infected (see attached photos). I was never treated for this.

I've had tons of blood tests done, all normal, even an NHS lyme test. The only diagnosis i've had so far is POTS after a positive tilt test. My heart rate on standing does seem to stabilise to around 75-80bpm regularly though which makes me think that this sudden onset of POTS is secondary to something else. The only other thing I suspected was CFS/ME but i've heard that many people with this actually test positive for Lyme.

Any help is greatly appreciated.

Adam

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6 Replies

  • Posted

    That's highly likely to be Lymeand/or one of its co infections. On the second picture the ring is more defined with slight clearing in middle very similar to mine. The rash is different for everyone.

    It's also not unheard of for our immune system to keep it in check and then months or even years later have symptoms pop up which because of the confusing onset can lead us to get misdiagnosed with CFS etc. Theres not a system in your body that Lyme won't mess with so progressive random symptoms should start raising suspicions of Lyme when other conditions have been ruled out. Especially when there is history of a bite and suspicious rash.

    Not sure where you are in the world? if you are in the UK your up the creek without a paddle in regards to appropiate treatment. An open minded understanding gp is your best bet. Have you had a Lyme test?

    You may have to invest in privately getting a test to help get you on the right path.

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    • Posted

      Hi Jo-Anne,

      Thank you for your reply I really appreciate it. Yes Lyme and co-infection was my suspicion, it's good to hear that i'm not going crazy and that the rash does look like Lyme. I'm in the UK and have had an NHS microbiology test from Lyme which came back 'normal.' I'm not sure if this was the ELISA test but i've heard testing in the UK is quite unreliable so I think i'm going to look into private testing in Germany. I just don't know where to start!

      For now i'm hopefully going to be treated for my POTS symptoms but the joint pains, fatigue, brain fog and general unpredictability of the symptoms are something that is making life increasingly hard, i've managed to go back to work but it's a struggle. Thanks again for your help!

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  • Posted

    Hi there, I also suspect I have Lymes disease after developing a rash that is expanding in shape, and additional marks appearing more frequently now. Not painful, itchy, sire or raised. Nearly all the symptoms that present themselves, I can relate to and suffer. For a long time I have been suspecting it was my HRT side effects, until the rash started to appear.  Exceptional fatigue, headaches ( never used to suffer) joint pain to name a few. I went to see my GP last week and she seemed very sceptical, saying 'your not in area where Lymes typically is' ??? To pasify me, she asked for Lymes blood test but couldn't advise what the rash could be. Came back on Friday as normal. I was half expecting this with everything I have read up on and how difficult it is to get a diagnosis. I'm convinced though. I struggle with a timeline.  I recall a bad episode of bites the year before last and also last summer. I put them down to horsefly bites and ' put up' with them and didn't seek medical advise. They were quite bad at the time. I am seeing a GP on Friday whom has a skin specialism, so hopefully he can shed some light. I also would like 

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    • Posted

      I would also like to have a second opinion, test, but unsure how to go about it. I think it may be a process of elimination over the next few weeks, months. Very difficult though as just want to feel 'normal ' again. Most days I feel like I have been hit by a bus. 

      I hope you you get some answers very soon. 

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    • Posted

      Hi Michelle,

      It's difficult to know where to turn isn't it. I went to the Well One clinic in Beverley where I got a clinical diagnosis of Lyme. I'm going to see how I get on with a short course of Metronidazole, I fear that I actually have Chronic Fatigue Syndrome though due to the extreme post exertional malaise I get from even walking on a treadmill for 10 minutes (I tested this the other day and it didn't end well). This symptom seems like the key differentiator between Lyme and CFS/ME.

      I wish you good luck in your search for an answer. I've almost given up hope and am just existing at the moment, I hope I can somehow return to normality one day.

      Adam

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  • Posted

    Hi Adam I also believe I have lymes desease but standard NHS test was negative I don't know what to do next I've got fulutusting heart rate muscle twitching and electriscshicks all over my body and vision problems I can remember picking a little needle thing out of my right ankle and a week or so after that my foot went numb

    Please let me know what info you find out I know there's a partition going to parliament next month ref to the fact NHS don't recognise lymes desease

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