I first noticed neurological symptoms seven years ago.  A few months before, I had visited the Northeast but symptoms didn’t present immediately.  I easily and regularly took spinning classes each week which came to a screeching halt.  Despite multiple x-rays, scans and tests, each specialist and my general doctor had no explanation for the excruciating pain in my feet, where it all started.  I could not tie my shoes as the tightness would fire nerves.  I could look at my calves and thighs and literally see my nerves “popping” like popcorn under the skin.  Frustrated and refusing to accept to be on long-term medications without a diagnosis, I made my way through one general practitioner, two podiatrists, two neurologists and one specialist in Fibromyalgia (which was a misdiagnosis, he confirmed).  During these two years, the episodic pain was every two weeks and the fatigue was debilitating. The pain would migrate and lodge in a specific location in my body for a few weeks and the symptoms grew to include swelling of my throat every time I ate.  Tests included MS, Lupus, ALS, amongst others.  The theories went from Peripheral Neuropathy to Fibromyalgia to Food Intolerance to an Unspecified Pain Disorder.  Several MRI’s later and a lot of time wasted (each specialist took months to see), I kept this mainly to myself as I felt foolish not being able to say what was making me very ill to friends and family.      I experienced episodes of feeling “outside my body” and constant forgetfulness as I tried to do simple errands every day.  After about 3 years, lumps began forming in my underarms and they could be very painful.  I canceled plans constantly as my pain became more generalized and spread-out to all-over my body that felt very much like the flu several times a year.  It was an effort to get from my bed to the bathroom.  I needed assistance to walk up small inclines and there was no way to exercise, so the weight piled on.  Given a few snickers and glances from others, I knew their takeaway was that I was a lazy person whose weight gain made it necessary to walk with some assistance.  All along, my blood work came back good so I continued on managing a new life for myself while looking somewhat normal on the outside and feeling terrible inside.

My husband lives an active life with many social obligations and we have many groups of friends.  At my worst, If I had to lie in bed all week in order to attend a dinner party on Saturday, that’s exactly what I did.  No one was the wiser.  If I forced myself to get there, and it would make me so happy to have a connection to the outside world and feel normal.  My body, of course, would pay for days.  During the first half of seven years, I was off and on 600 mg. of Gabapentin (an anti-seizure) at night.  I had such pain that my feet ripped several fitted bedsheets during that time from tossing and turning.  The top sheet created pain just by gently covering my feet. I could not stay in one position lying down for longer than 30 seconds.  The Gabapentin made sleep possible but gave me blurry vision during the day and I was extremely groggy the next day.  It was a vicious cycle.

I decided to try a holistic approach and found Dr. Dominique Fraden-Read in Santa Monica, California.  She did a series of blood tests and found that in addition to Chronic Cytomegalovirus was Chronic Epstein-Barr Virus. I did IV infusions weekly in the beginning and now do them as needed.  The lumps under my arms wouldn’t calm down so she sent me to Dr. Lawrence Piro who was at the John Wayne Cancer Institute (and now runs The Angeles Clinic).  I knew it wasn’t cancer because of my perfect bloodwork, but he did a complete scan of the lumps to make sure and of course, all was well.  As I was leaving his office completely confused once again, he asked me if I had ever had a Lyme test.  No, I replied, and I guess in hindsight I was deterred by the ambiguity of all the false-positives and false-negatives.  But because he is a well-respected cancer expert, I reconsidered.  He completed a two-part blood and urine test that was Lyme positive.  I went to Dr. Jeff Harris in Malibu (a true tick expert) and he confirmed the result through another round of tests.

Dr. Piro gave me a word of insight:  He said Lyme disease probably wasn’t the first breakdown of my immune system and it probably won’t be the last.  Anyone I’ve ever met who has some of what I have has had Mono in their past.  I suspect that or Chickenpox was the first breakdown of my immune system followed by Shingles, CCMV, CEBV and Lyme.  I’m determined to have Lyme be the last domino to fall.  I am hoping to have a clear and non-active Lyme test this year.

I want to point out that I did, in fact, try antibiotics for three months after my diagnosis of Lyme.  Even though it was now six years later, I had to try.  I had three months of Herximer Reaction that was very difficult.  I became very sick during that time, (lots of colds and persistent cough), was in unrelenting pain, and had to discontinue the course.  I am not opposed to people trying antibiotics, they do work wonders and research shows they are most effective when the Lyme is diagnosed early.  I may even try again in the future, but for now, I am happy to be operating at about 85% now.  The experts say to wait long enough (up to a year) for another Lyme test after antibiotics because it can give a false-positive if done too early.  So the jury’s still out.  Maybe three months on three different antibiotics was enough to wipe this out. 

The CCMV and CEBV can mimic symptoms of Lyme, so even though I have the markers in my blood for all three, I can’t judge by symptoms alone if I continue to carry Lyme.  I’ll have to go back for more testing to be sure.

My current state is that of “episodes” which last anywhere from a couple of weeks to 3 months.  They come out of nowhere, no rhyme or reason.  When I am “in” an episode, I do not have the taste for alcohol, dairy, meat, grains, etc. and forget about exercise! Though I resist the Gabapentin, it is necessary sometimes as the insomnia and pain are tough. Then it is over as quickly as it came on, I just have to wait it out.  When its over, I go off the Gabapentin and tend to land at about 85% of my past “normal” self, never where I was before all this began.  Much like pregnancy, I’m so happy to have the outcome (feeling better), that I almost forget the hell my body has just been through and engage with friends and family again.

I’m glad you’re here. We won’t judge. I wish I would have resonated with the idea of testing for Lyme earlier in my journey but it’s my goal to bring the experts to you and your loved ones so that you can get the help you need more quickly.  Hang in there.  Each time you come back, we hope you see something new.