Really hurting, does this sound like lyme?

Hi all, this is my first post. I'm really hurting here and need some answers before I lose my mind, so any contribution that can be made to this thread will be massively appreciated!

To start with some background, I'm a 30 year old guy from the Netherlands, and in early June I took a vacation to Greece (I had only just recovered from a campylobacter stomach bug). A few days after I returned home, I started developing odd symptoms - gastrointestinal upset, followed by dizziness, a weak-knees feeling (felt like they were going to buckle from underneath me) and various other flu-like symptoms, like fatigue, derealization, nausea, brainfog, headaches etc. Also some urinary problems with delay and frequency/urgency. All this has been persistent since then. At one point I also had a rash on my wrist that lasted about four days. It felt hot to the touch, but wasn't the classic bullseye rash, more like a splotchy red rash about two inches in size. I never noticed or felt any tick bite though.

Since then, I have also developed testicular pain (ultrasound was clear) and my knee problems have gotten worse - to the point where I'm hobbling around my apartment, and can't really stand in one place longer than 30 seconds. So as I type this, I'm laying in bed, feeling unreal, a bit dizzy, with awful pain in both knees and an ache in my private parts. I can barely walk and feel like I'm getting worse.

When all this started, I naturally felt scared, so I went to the hospital a few weeks ago, where they ran a bunch of tests. I had a brain MRI, spinal tap, a bunch of blood work, urine sample, thyroid tests, EMG, EKG, chest x-ray, all normal. I asked to be tested for lyme and had a blood test (ELISA), that was negative.

So I'm in a world of hurt right now and still have no diagnosis. I saw a rheumatologist on Friday, and she suggested the western blot test for lyme. I am feeling convinced that I have lyme as I match all the symptoms, but I'm worried the test will be negative as everything else has been so far. I get the results next week Friday.

If anyone has any advice, support, or anything else I could try, I would love to hear it. Also please post if you feel this is indeed lyme - the not-knowing has been driving me crazy. I'm so afraid of becoming disabled, and I've spent many days in tears. Thanks for reading, and I hope you all feel better soon.

Post Edited (Staralfur) : 8/3/2014 4:23:11 AM (GMT-6)

If you haven't yet, read through the first post called, "New To Lyme?.......Start here!" at the top of the page.

There are lots of helpful suggestions on detoxing, and that will help you with the inflammation in your body/brain. I've found that helps with the debilitating pain.

One suggestion, this is only my opinion, would be to see if a local dr would prescribe you some antibiotics for at least 3-6 weeks, and after that is finished, then test you again for the Lyme. Also, if taking the meds help you with the pain/inflammation, that could be a great marker for the dr to realize you are dealing with L and possible co-infections.

I am sorry you are dealing with all of this, and I hope that you will find your path towards health. Please, stay in touch here, ask and seek help and answers, and we will do what we can to help and support you along your journey.

Also, I don't know if you would be able to get an IGeneX (In California) test done, but they are testing more strains and doing better work at picking the Lyme up on their tests. IGeneX is able to send you a test kit if you go to their website. I hope this is accurate, as I see you are out of the USA.

Good luck, and stay strong as you are able, and please don't give up. There are answers and help, we just really need to work at finding it for ourselves. You can do this, and we can help along the way.

Thanks all! Really appreciate the support. It's nice knowing that even if this is lyme, I can count on this place to get me by. I'm feeling slightly better today, and that's comforting. Hope it lasts!