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Eagle Syndrome - Online Support Group

Root cause if my illness

Hi Everyone,

I had my right styloid remove August 2018. It seemed to resolve my issues for a few months. This includes jaw pain, headaches, and swallowing difficulty. They all came rolling back in around Jan 2019 and more symptoms started. Thyroid then went haywire. I started getting neurological issues, joint pain, aches, severe debilitating fatigue, vision issues, extreme fog… and day by day they became more extreme. I had my thyroid removed June 2019. Symptoms continued to get worse. After being told I was “perfect by doctors” I became frustrated bc I felt like I was dying and I was barely functioning.

Fast forward to Jan 2020 and I got my real diagnosis after much pushing, LYME!

All this to say Lyme symptoms overlap with many diseases. I just want to encourage everyone to be checked for Lyme if they can’t find an answer.

Stay strong!

So sorry after all you’ve been through with ES that you’re still ill; I hope that they can get this treated (don’t know much about Lyme disease, not very common in the UK). Gentle hugs to you & thinking of you :hugs: :bouquet:

It has been suggested to me to be tested for Lyme (not by my doctors who have told me that it is unlikely). Excellent suggestion!! I think often we with complex presentations have more than 1 issue creating a perfect storm, so they need to peel back the layers. Hopefully treatment for Lyme will help you!

I’m sorry, too, for your Lyme Disease diagnosis. I have a niece who has it & I know it has challenged her life significantly, however, she’s doing well now that she’s found a treatment protocol that is working for her. There is hope even w/ Lyme Disease! Like ES, it’s getting the diagnosis that’s the hard part.

By tested so you mean clinical? Are you seeing an Lyme literate doc? One thing I’d like to encourage is seeing a Lyme literate doc. Lyme shouldn’t be diagnosed solely off labs. They aren’t accurate especially for women.

I hope you find your cause and get into recovery! Good luck!

It’s absolutely been devastating! Luckily I’m a pretty head strong person so I’m able to fight through it, but there are days when I can’t move.

I’m so glad your niece’s protocol is working! That’s fantastic!!

My niece also experienced those down days & may still occasionally. I remember that she was sleeping 12-16 hrs a day at one point & was only up for very brief periods. I believe those days are behind her now.

I have another friend w/ Lyme disease who also has found a protocol that works well for her. Both she & my niece (they don’t know each other) have changed their diets as part of their recovery protocol. If that’s not part of yours, you might want to talk to your doctor about that aspect.

I’m glad you’re head strong & a fighter. That will make all the difference for you as you move forward w/ treatment & recovery.

I’m so glad both are improving. It’s such a tricky bacteria. Then co-infections like Babesia, ugh.

Thanks for the diet recommendation. I cut gluten, sugar, and processed foods from my diet. If I slip I notice a bad regression in my symptoms the day after.

Detox really helps me too.

Thanks for the info again!!

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How do you find Lyme literate docs?

Hi!

Well Lyme is really common where I live. I know several people that have it and they’ve gone through a lot of docs so I found my doc through their trial and error.

You could also register and search for a doc near you: https://www.ilads.org/patient-care/provider-search/

Good luck! If you have questions along the way please feel free to ask! I’ve seen a few Lyme literate docs and seen lots of protocols :heart_eyes:

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