Late stage prognosis + testing

Infections
1

Hello, I’m a 19 year old male who’s been dealing with an unexplained chronic illness for 2+ years, details of the symptoms I’ve gone into here https://patient.info/forums/discuss/medical-mystery-671412.

It had never occurred to me I could have Lyme Disease, it was raised by someone on that post. My symptoms make it eminently plausible, though I don’t recall ever being bitten by a tic. If it were Lyme, having been ill for 2 years, what would the prognosis for symptom recovery be? My neuropathy, dry mouth and IBS type symptoms are getting much worse at the moment (already severe). Unfortunately I’m unable to make any headway on this for at least 2 weeks (out of the UK), leaving me very distressed about both my worsening condition and my chances of reversing it. 

2

Hey Alexander,

I’m a 20-year-old male, similar to you, I have been facing chronic illness as well. My main symptoms being a rapid heart rate, fatigue, ligament/ tendon pain, and headaches, I went to many different cardiologists and other doctors, even the ones at the hospital, couldn’t figure out why. I continued to search and both a holistic doctor and naturopathic nutritionist think Lyme/ other infections. I got the standard tests done but they were negative, but I was advised to get a specialized test and it came back positive. I was a little apprehensive to start treatment because the first tests were negative but after doing the herbal treatment I’ve been feeling better, almost no fatigue. I haven’t yet done the antibiotics they want me to do but probably will soon, just being cautious any time medication/ therapist are involved. 

So I have seen that Lyme/ co-infections can cause lots of weird stuff even without a known tick bite or rash or fever (like in my case). I would look into it if I were you and even if the standard tests are negative not totally dismiss it as a cause. Not saying you need the expensive special test but just an option. 

My cd57 was low and white blood cells were also low pointing to chronic Lyme. You should get a copy of all your labs and check stuff like that, and get a doctor to take a look. ( if they aren’t low for you it doesn’t rule it out, just something to look at) 

If sun or sugar bothers you that could be a clue, also maybe if your sensitive to things like chemicals and allergies more than before. Just an idea. 

I would keep an open mind on it maybe being Lyme but make sure you had other possibilities tested as well. If you go to a Lyme doctor they will most likely tell you it’s Lyme. When you're a hammer, everything’s a nail. Ha, but really, question everything and meet with a few doctors for different opinions. 

Maybe diet could be something to look into, gluten-free, low fodmap (google it, not as well known), or dairy free might help you. 

Best of luck and God bless. 

3

I have low white blood, neutropenia and anemia, but my iron and B are fine. I don’t have the joint pain I see associated with Lyme, and gluten/lactose diets failed to give me any improvement. I’ve never felt like this is an allergic reaction, given I feel this way everywhere it seems unlikely. Whatever the cause, my symptoms are atypical. I’m very wary about alternative medicine and “LLMDs”, as you say, when you’re a hammer everything’s a nail. I have to keep faith in my blood results, which are indicative of chronic disease, I just don’t know what. Given the amount I’ve had tested (listed in the link in my original post), there is little left to explore, hence a diagnosis that would once have seemed dubious, now looking a more plausible explanation for symptoms that still don’t quite fit.

  

I appreciate the advice, it’s through this site I’ve decided to take a look at Lyme seriously. I intend to get an IgG test in the coming weeks (one of the few I’ve never had done). Whatever can be taken seriously as a cause of nervous system dysfunction in a young male, that hasn’t been ruled out already, should be considered.