Lyme disease suspicion

[Lymequestions]

Hi

lots of recent press has brought this to my mind again.

18 years ago, I was bitten and had what I now know a classic bullseye rash. My leg and ankle swelled up bad. Advice at time was just to rest.

over the years I’ve worried about this but DH thinks I’m being ridiculous so have never mentioned to GP/ taken further. I was diagnosed with hypothyroidism around 10 years ago, which I’ve always struggled to stay on top of with medication. I have fatigue, brain fog and from time to time irregular heartbeats, all attributed to thyroid.

reading current news has made me wonder if 1) I could get a diagnosis after all these years and 2) if it sounds likely I may have? Google searches are very contradictory so would appreciate advice from anyone who has experienced first hand.

thanks

Definitely worth trying to get a diagnosis. I know Lyme disease and hypothyroidism are linked. My thyroid disease came on after childbirth and I had glandular fever in my teens which is another trigger. Just knowing why I may have got it is somehow helpful, but if treating an underlying issue could actually help you then it’s definitely worth trying to find out.

Most people don’t understand the full impact of thyroid disease, even those who live with us. So many of the symptoms are invisible and chronic that we just learn to live with them, so while we’re taking our stupid little tablet each day it’s assumed that we’re fine.

My XP didn’t have a clue how hard it was for me until lockdown when I couldn’t get my usual meds and had to go back on thyroxine, ended up unable to walk more than 100m and in a right state pain wise.

Don’t worry about what your DH thinks. With the best will in the world, if you’re getting on with things and soldiering on, he won’t have a clue about the impact this has on your body and mind.

no Idea if you can’t be tested after so long but Hypothyroidism tends to go hand in hand with low B12/folate, low ferritin and low vitamin D, all of which can cause those symptoms.
Drs often mark you as ‘normal’ with a ferritin at the low end of normal but many feel awful below a minimum of 50. You can also be symptomatic at the low end of the normal range for B12 (which is set a lot lower in this country than elsewhere) and Vitamin D isn’t routinely tested. It might be best to look on your app and see if these have been tested recently and what your results were compared to the labs reference range.
If you are struggling to stay stable on your dose of thyroxine, are you taking it on an empty stomach, not drinking caffeine within 30 mins and not taking any multivitamins containing iron within 2 hours? All of these can affect absorption. Walnuts also affect it to I believe.
I have had a Lyme disease test in desperation as I have hypothyroidism and feel awful. Nearly a decade ago p, after several years of struggling, I was diagnosed with CFS & Fibromyalgia. No one seems to have any idea how to make me feel well. I feel I am just existing and have lost most of (now young adult) DCs childhood, struggle to work very part time and spend weekends in bed recovering from my part time work.

I wish this person was my dr.

During my 30‐year carrier as an internist with a special interest in thyroid diseases and hematology, I have met hundreds of patients, mainly menstruating females, who seek advice because of prolonged (1–25 years) fatigue, brain fog, muscle and joint pains, weight gain, headache, dyspnoea, palpitations, sometimes associated with sleep disturbances, arrhythmia, lump in the throat or difficulty in swallowing, and restless legs. The patients have often received a spectrum of diagnoses, such as subclinical hypothyroidism (treated with levothyroxine alone or with T3 containing preparations), chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, burnout, and overtraining. The blood count has usually been normal.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

You can get tested. I was quite ill a few years ago and they basically ran all the tests. With Lyme disease it’s a two part test. If the first part is positive and the second negative it can indicate an old infection.

NHS guidelines suggest you get retested in 3 months but my GP was quite keen to prescribe antibiotics at the time rather than waiting.

3 weeks of doxycycline, I do think it helped although recovering took a good year.

I also had glandular fever when younger. I think all of these infections hang around and when you are feeling run down flare back up. My best advice would be to prioritise your health and rest as best you can. I was previously a big fan of pushing through and getting on with things. I do think I could of avoided a hospital stay if I took my own advice.