I have all the lyme symptoms but pain

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Hi i was wondering if its possible to have lyme disease without any pain. I have alot of other symptoms and have had alot of tests that range from blood work to mri and seen a numerous amount of specialist and the only disease i havent been tested for yet is lyme.

I live in Australia so its existence is deemed impossible here.

I have a list of symptoms

-Severe brain fog

-vision changes

-Visual snow

-ringing in ears

-my mind feels like it goes mad sometimes

-panic attacks

-heart palpitations

-feel out of breath sometimes

-alot of eye floaters

-muscle spasms

-deep fatigue

Theres more but the the rest come and go as of the ones mentioned are what i deal with everyday.

I have been sick for 13 years and still havent had a diagnosis and my health feels like its slowly getting zapped.

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6 Replies

  • Posted

    I think anyone with unexplained symptoms such as yours should be given a full Lyme and coinfections test in their country. There is Lord knows how many patients with these types of symptoms who are potential Lyme patients being left to rot or being given cbt as treatment when infact they MAY have an infection that has triggered other issues. I wouldn't really rule out any symptoms or lack of symptoms with Lyme it is really unique to each individual.

    if it comes back negative you must still not rule it out until you have had full testing abroad via private blood test. Germany lab seems like the best option. Good luck

    Things are bad in UK but yes I've heard it's diabolical in Australia. They haven't managed to culture anything from any ticks there yet?

    There are doctors who will treat from Europe and America.

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    • Posted

      Thanks for the reply

      Ill look into what you have suggested so thanks heaps.

      Yeah in Australia ive read forums of people with lyme symptoms and have had positive test results but the government refuses these claims still.

      The sad thing is people who have these undiagnosed diseases are just left in the corner which for me is just ridiculous and inhumane. The feeling of being told that this is all in my head from a couple of doctors one time made the situation worst. I strongly believe that im sick and explain how would you like if you had these symptoms everyday and for me to tell you your imagining it lol.

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    • Posted

      Hi Dylan,

      I'm about 10 years into a struggle similar to yours but have had a few more symptoms that led to labs/tests that are beginning to provide a bit of hope. What finally got some momentum going was a few days where I was having a hard time walking (thigh muscles weak) while overseas and a local doctor gave a strong dose of prednisone until I returned home. That resulted in a diagnosis of Dermatomyositis (now viewed as incorrect) but had substantial improvement when I was started on imuran.

      Unfortunately the above treatment only worked about 6 months and neurological symptoms came raging back.

      Have you had a very thorough work up for autoimmune diseases? Your mention of vision fluctuation makes me want to bring up myasthenia Travis (someone else mentioned that before) and also Lambert Eaton syndrome. I'd recommend that at a miming you make sure your ANA is checked. Also go read up on the various paraneoplastic syndromes.

      If you have varying muscle weakness, does it get better or worse through the day? Have you ever had an EMG or NCS?

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    • Posted

      Hey mate thanks for the reply but i have seen a neurologist before and that sound more like that, i dont get muscle weakness or really any of the symptoms of those diseases you mentioned. And yes i did have a thorough work up on autoimmune diseases. Ive been battling on for along time now so ive done just about everything i could.

      Thanks for the reply tho

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    • Posted

      Rats..  So I'll try one more idea.  (Hopefully not miss autocorrects like I did in the last reply).

      Your symptoms also look fairly aligned with those folks with autonomic dysfunction suffer.  Ten years ago this was largely an unknown area but in the past 5 years more doctors are much more aware of it and how to treat.

      Does your brain fog ever get a slight improvement if you're lying down?  Have you noticed any increate in heart rate in general, especially when standing up?  If you have a blood pressure monitor at home, try taking your blood pressure several times while sitting down.  After it's stable and largely unchanging, stand up (no other exercise - just stand) and take your blood pressure many times over the next 15 mins.

      If your heart rate increases more than 20 beats/min I promise you that orthostatic intolerance is contributing to the fog.  If you have a rise in heart beat, a measureable drop in blood pressure, that's postural orthostatic tachycardia syndrome, aka POTS.  Read up on those symptoms and ask any cardiologist about a tile table test if you suspect that.

      Also, the anxiety/palpitations/fog/fasciculations/fatigue could be related to high levels of catecholamines.  Specifically, there's a type of tumor that is usually benign called a pheochromocytoma and it secrets adrenaline.  If you ever have palpitations and BP fluctations that seem related to body position it's certainly worth checking out.  There's a serum catecholamines test that an endocrinologist or for that matter any doctor that is cooperative can run.  

      Just trying....

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  • Posted

    My last message was needing approval do hasn't been published!

    The jist of it was contact that lab they will send you the necessities.

    The answer and treatment most likely lies outside Australia unfortunately for your bank account!

    Doctors will have us happily shipped into psychiatric wards. Honestly some days I would love to be in one because doctors really test your patience and sanity with this.

    Depression tablets are tablet of choice for the patients they can't diagnose. It's so so wrong!

    Fingers crossed for progress it's an awful long time not to have answers!

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