I have had this throbbing/ pulsing sensation in my face, head, and what feels like my brain. It actually feels like I can feel my pulse in the artery that runs from my spine up into my brain. However, the throbbing in my face is a little bit more rapid than my heartbeat and not always in sync, so I'm not sure whether the two are related. Sometimes it is so strong that my head shakes up and down like a bobble head doll. Also, more noticeable when lying down, I feel as if I am on a boat rocking back and forth. Out of all my symotoms these 2 worry me the most and are only getting worse. I saw a cardiologist who diagnosed me with arrythmias but was clueless about the weird sensations in my head. I also had an MRA of my neck about 8 months ago that did not show anything, and neither did my recent MRI of the brain. If anyone knows what I am talking about or has experienced something similar...PLEASEEE let me know. I don't know what else to do. Thank you! -Michele

I went all the way through Columbia neurology(NYC). I had every test you mentioned - brain MRI's and spinal taps TWICE. MS, ALS, Parkinsons, various infectious diseases, Lupus and a multitude of other diseases/conditions were slowly eliminated as possibilities. Lyme tests of every sort through every avenue (blood, spinal fluid, etc) were also all negative or borderline. But I was becoming more and more ill, with more and more severe/frightening symptoms across all systems of my body. I went to a Lyme specialist recommended by a friend, just to complete the investigative process. I didn't expect anything after all of my false starts and blind alleys.

Because I had done so much work with other doctors/testing and all other possibilities had been virtually eliminated, this doctor was willing to make a clinical diagnosis of Lyme and begin treating me immediately with Doxycline. After about two months of treatment, the Western Blot through IGENEX labs in Palo Alto started showing positive bands (though not yet fully seropositive). I have been taking doxycycline since February of 2007, and I can confidently tell you it has saved my life. I am still not syptom-free; however, my overall feeling of constitutional health has skyrocketed compared to one year ago.

This post sounds like it's about me, but it's about YOU. You need to find a Lyme doctor, take all of your test results and symptom history with you, and find someone who will treat you on a clinical basis if your test results don't cooperate. Your story touched me - I have the good luck to be in the metro New York area (access to the finest doctors), have wonderful health insurance (no limitations for doctors, treatments) AND to be able to devote myself almost full time to this quest. But it was still almost impossible! You are so young, how much harder for you. It sounds like your parents are doing all the right things, but go further down the Lyme road.

I'm sure you know that you are close to Stonybrook, one of the foremost Lyme research/treatment centers in the US. Try them, if you haven't. I am 15 miles west of NYC in suburban NJ. I travel pretty far to see my Lyme specialist. Not only do you need the diagnosis, you need adequate treatment. It is not easy to find. So you can't give up.

You will hear all kinds of things - I was told Lyme is a 'myth', a 'cottage industry' in New Jersey, is adequately treated by 3 weeks of Antibiotics, etc. etc. It is clear that both the diagnosis and treatment of Lyme are controversial and poorly understood. But as a mature woman and a lifelong athlete who knows her body backwards and forwards, I was able to make a treatment decision for myself. I had to make a mental adjustment away from an 'ER' and 'Grays Anatomy' world where the doctors are perfect and all-knowing, to a world where I am most responsible for my own health. I hope my experience can help you achieve the same confidence and belief in yourself - now that you have covered all of the medical bases you can - to pursue diagnosis and treatment. It is imperative to get treatment.

If you don't have Lyme, you shouldn't be harmed by taking doxycycline for awhile - and it could give you your life back, as it did me. Please show this to your parents, and keep trying.

Cheryl

Postscript: I had lunch with my elderly next door neighbor last spring and told her a little bit about my health nightmare. As it turned out, SHE had contracted Lyme at the EXACT same time that I started feeling sick. She was lucky enough to have a prominent Bulls Eye rash and an immediately positive set of tests. She said she was certain that she had picked up LD in her own backyard while gardening (right next to mine, where I play daily in the grass with my young son). This is certainly not a coincidence.

Susan