Lyme Disease

When life gives you Lyme, have a Margarita

I’m finally dedicating a page to my journey with Lyme Disease, in the hopes of shedding light, offering hope, and simply sharing my story.  For now, I will leave comments open on this page so that others can also tell their tale.

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The Symptoms

In January of 2010, I began experiencing pain in my left knee.  After consulting a doctor and having an x-ray, I was sent to an orthopedist.  Without the benefit of an MRI, he declared that I likely had a meniscus tear and would require arthroscopic surgery.  Even though I did not remember having injured my knee.  And to say that I am not the athletic type would be an understatement.

Surgery was performed in March, and rehab began immediately after.  Four weeks into rehab, I was not improving.  I was, in fact, getting worse.  After some blood work, which came back “elevated”, the surgeon determined that I had an infection, and wanted to perform another surgery.  After that June surgery, I was placed in an immobilizer for a week and began rehab.

Again, I did not get better.  In fact, I was far worse off than ever before.  And I could only bend my knee to 45 degrees and could put no weight on it.  Even after many weeks of therapy.

Some time after the second surgery, I began having pains in my shoulders, right hand, and upper left arm.  The surgeon was at a complete loss for what to do with me, attributing the knee pain to a bone defect, then a bone bruise, and finally throwing up his hands, he said that I needed to see a rheumatologist as well as a therapist.  So that I could get some Zoloft.  “To help me feel better.”  We walked out the door and never looked back.

We were now into late August with no answers in sight.  I was in a leg brace, crutches, and on some pretty potent pain killers.

I met with an orthopedist at the Mayo Clinic in Jacksonville.  He suspected a system wide infection and ordered another MRI and blood work.  He also arranged for me to see their rheumatologist a couple of weeks later.  Just to rule out RA.

At that meeting, the rheumatologist examined me and looked over my blood work.  Even though my symptoms were atypical of RA, and even though I tested negative for RA, he said that we were going to treat my illness as though I had RA.  He called the orthopedic surgeon that I had seen earlier, and he went along with this diagnosis.

I was then put on prednisone (which made me crazy) and methatrexate (which didn’t help).  The doctor told me that while they couldn’t reverse the effects of the disease, the meds would try to stop it.  And I would be on them for the rest of my life.

For me, this was a death sentence.  I was in constant pain, could not walk, and was losing use of my left arm, and right hand.

A local rheumatologist picked up where the Mayo doctor left off, and when she saw that I wasn’t getting better, she suggested that I go on stronger meds in addition to what I was already on.  She also issued me a permanent handicapped placard for my car.  This was a clue as to my prognosis.

This is when my husband began to put the screeching brakes on the whole process.  He began researching the affects of methotrexate on the immune system.  It pretty much shuts the whole thing down.  After a month, I went off the RA meds.  I was scared to death.  Scared to keep taking them.  Scared to go off of them.

The Diagnosis

He then made an appointment with his physician, who is well learned about the body’s ability to heal itself.  The doctor calmed my fears, and looked over all of the previous blood work.  My vitamin D levels were in the tank.  And that was just the tip of the iceberg.  With the doctor’s help, I embarked on a journey to build up my own immune system through vitamin supplementation, and healthy eating.  And then we began the long walk to find out what was really wrong with me.

Through some kind of technological miracle, orchestrated by God himself, my husband located a doctor in Orlando who was both a naturopath and an internist.  At the first visit, he looked over my blood work, examined me, and told me straight up that this wasn’t RA.  After further examination, he began to suspect Lyme Disease.

Going back in time a good bit, I did remember an odd bite on my left knee some years before. I thought it was a spider bite.  And I recall experiencing shooting pains that would come and go.  I had relayed this information about the unusual bite to each doctor that I had seen, but it fell on deaf ears.

The month prior to the knee pain beginning and not letting up, I had a bad bout with a virus.  Likely this weakened my immune system, allowing the Lyme to take hold.

And then the benefit of the two surgeries, was that it was able to spread to my entire system.

Hindsight.  It is indeed 20/20.

My new doctor ordered a good deal more blood work, including a definitive test for Lyme to be sent to the IGeneX lab in California.  This lab specializes in Lyme Disease.  Interestingly, we noted that I was tested for Lyme at the Mayo Clinic.  The report said that I was negative, but needed to be retested in a couple of weeks.  Indicating that I had at least a couple of bands show up in my blood work.  The CDC guidelines for Lyme are archaic.  It’s like being a “little bit pregnant”.

No one at the Mayo Clinic mentioned this to me.

The day before Thanksgiving, I sat in the doctor’s office and he gave me the news.  He said I have good news and I have bad news.  The good news is that it is Lyme and it is treatable.  The bad news is that you have a very long road ahead of me.

At this point, I could no longer drive or walk any distance.  I was also experiencing neurological problems.  I could not string together simple thoughts and sentences, could not at times remember even my phone number, and was constantly dropping things.

I remember sitting there crying in the doctor’s office.  Because I finally had proof that I wasn’t crazy.

The Treatment:

By mid-December, after several weeks of building up my system with supplements, I started on a protocol that included two different oral antibiotics.  I was also taking herbal medications designed to work with the antibiotics to strengthen my immune system and battle the Lyme.

Within 3 weeks I was walking again, and had regained the use of my left arm.  After a time, I was able to wean myself off of the pain medication, and could begin a new treatment using Low Dose Naltrexone in conjunction with the antibiotics and herbal meds.  This is when I saw the most progress.

I have been in treatment now for nearly 7 months and am making tremendous strides.  My children have their mommy back, and my sweet husband was able to relinquish all the cooking and grocery shopping duties back into my capable and functioning hands.

I am continuing the battle, as my recent blood work shows that this disease still thrives in me, but I’m winning.  I’ll likely always have issues with my knee, because somewhere between surgery #1 and #2, I inexplicably lost my ACL. An MRI after the first surgery showed that it was intact.  After the second surgery, gone.   Awesome.

If you know anything about Lyme Disease, you know that it is an insidious disease that can look like many other diseases (such as RA, MS, or even ALS – Lou Gehrig’s Disease).  It is very difficult to diagnose, and even more difficult to treat.  Because no two patients present with the exact same symptoms or respond to treatments the same way.

This is why many doctors are reluctant to treat Lyme patients.  I had no idea the controversy swirling around this disease within the medical community.

I take over 60 pills a day.  Including now 3 different antibiotics.  In the next few months, my protocol will change to include IV antibiotics.  If you are interested in my protocol, I will gladly send you my laundry list of meds and herbal medications.

Also, I’m including some helpful links that have been a lifeline to me.  I’ve condensed my story into this abbreviated version, so that your eyes don’t glaze over.  But I’m happy to talk about it.  I get more e-mail about this subject from readers than any other.

I’m one of the lucky ones.  It oftentimes takes years to reach a diagnosis, much less find a doctor that is Lyme literate.  I did both in less than a year.  Thanks to my intrepid husband.

Through everything, I never lost the ability to write.  I thank God for that, and for all of the sweet prayers that I could feel across the miles.  They sustained me.

Please feel free to share your thoughts and your journey in the comments section of this post.  And know, that if you suffer from Lyme, or love someone that is doing battle with Lyme, you are so not alone.

References:

Under Our Skin – a must see documentary, that is now available on NetFlix.

Healing Lyme – a book by Stephen Harrod Buhner (can be found at the library)

The International Lyme and Associated Diseases Society (ILADS) – Great resource for finding a Lyme literate doctor

IGeneX, Inc.  - Lab for testing for Lyme

Lyme Bytes – Great blog with relevant information