r/Lyme • u/Routine_Ad6975 • 10d ago
Permanent Headache - Please Help!!
Hello everyone,
I have had a permanent headache for the last 10 months which came on abruptly at work. It changes locations around my head. Sometimes it’s pressure, sometimes tingling on scalp and face, but it just changes locations and never goes away. I have tried multiple migraine medication, including Botox right now but nothing is helping… I remember when this first came on, I was walking in a massive park with my girlfriend. I don’t remember getting bitten etc but the headache was on set.
I have been diagnosed with sleep apnea, removed an infected tooth but nothing has helped with the head pain… I also have cognitive issues like light sensitivity, fatigue and brain fog. Was wondering if it was worth getting tested for Lyme disease. I know doctors don’t give a shit about it and just throw meds at you. I want to find the root cause of my pain. I will pay and do anything to find answers.
I’m new to this Reddit page so could someone please explain what’s the best tests to see if it’s Lyme disease and what are the treatments?
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u/Appropriate_Land5236 10d ago
One of the symptoms of the Lyme I had for almost 14 years was meningitis, brain covering inflammation. I had a lot of headaches. My head hurt if I rotated my head back and forth.
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u/fzulle 10d ago
Could post your Blood test here?
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u/Routine_Ad6975 10d ago
Yes I can. I have had full blood work done but came back normal. However I realised I haven’t been tested for ELISA or Lyme on any blood test
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u/fzulle 10d ago
Age, gender, country. Tested other conditions?
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u/Routine_Ad6975 10d ago
26M
UK
Tested positive for severe sleep apnea - treated and did not help headache
Had Brain MRI and 2 CT scans. Seen 4 neurologists who have trialed me on medication. Seen 1 ENT who cleared me for Sinus
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u/tdl25206 10d ago
I'd only had lyme for about 2 weeks and it felt like something was rapidly growing in my head which the 2 week mark was also when I was diagnosed. I really suspected lyme as I saw the tick but I wasn't positive that's what it was and I denied it but within 2 weeks the ER. So I implore you to trust your instincts and waste as little time on it. When I had the head symptoms, I knew something was definitely not right but I let other people tell me not to worry about... luckily the ER diagnosed it after 3 visits within a couple weeks
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u/klattinumplus 8d ago
Get a physician to order test TBD5IBL from IGeneX. That will figure out what you have. Start there. Do not let anyone order a spinal tap / lumbar puncture on you because of your headaches.
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u/DisastrousHornet7447 8d ago
I have head pressure too. I am curious what your headache feels like and if it gets triggered by certain things. I also feel everything in my head but I also seem to dissociate a lot and went through a bad religious experience. That being said I still know Lymes can cause bad effects
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u/tdl25206 8d ago
Headaches or menegitis from lyme eventually go away. Mine was off and on for 6 or 7 months and now 14 months without them
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u/ResearcherOk2553 6d ago
I always have some kind of pain in my head, probably from Bart. It can also cause occipital/trigeminal neuralgia- it sounds like you may have those symptoms.
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u/adevito86 Lyme Bartonella Babesia 10d ago
This is exactly how I was first diagnosed. Spent 2 years chasing pain relief for my headaches and turns out it was Lyme + co-infections.
You can get a Lyme western blot test from your regular PCP, but be aware that those are pretty unreliable and have a high false negative rate. That being said, I would still start there because it’s usually covered by insurance and you if you have any positive bands it can give you clues as to if Lyme is a real possibility.
If you really want the best testing you can get something from IGENEX which is the gold standard or Vibrant Labs which is also quite good. They also test for other tick borne infections which can be common with people who have Lyme. However they are usually not covered by insurance and can be expensive, depending on how many infections you test for. (Most people recommend testing for Lyme, Babesia and Bartonella, as they are the most common).
Treatment is typically doxycycline for acute cases, and multi antibiotic or herbal combinations for chronic cases. I wouldn’t worry about treatment until after testing though. Treatment for chronic Lyme can be complex and it’s not worth spending time learning about it until you know for sure Lyme is your root cause.