What is it?

I have always been a healthy person, until December 2015.  Then I noticed changes in my body and stamina that really signaled to me that something was very wrong.

I have been a Kindergarten teacher for 16 years, and I have had my challenging years.  This year wasn’t one of them.  My class was an absolute joy, but once the holidays came around, I knew  I wasn’t going to be enjoying them too much longer.

The symptoms I had came on slowly over time.  Most notably, it was the joint and muscle pain that got to me first.  I had moved into a new classroom, so any pains I felt in my arms or back I would attribute to moving furniture at school or doing yard or garden work at home. I would notice that my back hurt when I slept at night, or my elbows were more sore when blowing leaves with the leaf blower.  It wasn’t until December, when I couldn’t hold a hairdryer without immense pain in my left elbow, or hold a gallon of milk without two hands, that I knew I had to get to the doctor.

Initial blood work confirmed that I had lyme, although the amount present wasn’t enough to market me as a full-blown case.  I was put on doxycycline for a month. I was told it would take 3 months for the antibiotic to get into my system, and then another three months for me to start to feel better.  Not a good prognosis for someone who has 16 students waiting at school, but ok.  At least, I knew what I could expect, or so I thought.

At this point, I was extremely weary and could not really do more than sleep and eat.  Getting a full night sleep was not rejuvenating.  I woke up feeling just as weary as I did when I went to bed. And the eating became very challenging as I would have extreme inflammation after eating any carbohydrates.  I had talked to various people who had lyme, and I was told to get gluten free products.  Sadly, for me, gluten free bread and crackers still meant lots of carbs that my body just couldn’t handle.

And I tried!  I really love my sweets, so in a weak moment, I’d eat a ‘healthy’ peanut butter cup made out of soy butter….but i’d still get the pain in my muscles.  I married an Italian, and we live on pasta and bread…I would soon learn that these foods would cause more pain than joy.

Even eating an apple or some pineapple, which has properties to combat inflammation, would leave me in pain.  So, I wasn’t eating much and I was still extremely tired.  I’d get up to help get my daughter on the bus for school, only to go back to bed until 10 or 11.  Totally not me, and totally not good when you have to work outside of the home.

So….I made an appointment with a rheumatologist who was well known in the area.  I was impatient for 3 months to go by to start to feel better,and I wanted to be sure I was doing everything I could to get better.  He reminded me of Stephen King with his wispy hair, pointy nose and thick glasses.  And he was very quick during the two appointments I had with him. He took a look at all my previous blood test results and announced that “No, not lyme….you have fibromyalgia.  Take these Lyrica and come back to me in two months.”

I walked out of that office and never looked back.  He clearly was only looking at one of my symptoms, not a combination of them. And the amount and intensity pain I had was clearly influenced by what I ate, which signaled to me that something was causing my issues.

In January, I went to a neurologist because I was having sharp pin prick pains through my body.  He requested an MRI of my brain, which thankfully showed no problems with my brain.  He also requested more blood work, as he thought I had a virus. The results showed coxsackie and EBV in my blood.  So…I had all these things going on, and he says, “Well, you don’t have lyme, just coxsackie.”

“How long will that last? ” I asked.

A curt, “Six months,” was his reply.  Okay, then. Another diagnosis.  What to do? Now, I have 3 different diagnoses, the same symptoms, and no real treatment plan.  Wonderful. (Side note: coxsackie and EBV can be co-infections with lyme)

My next stop was  going to an infectious disease doctor, who  said there’s no way to tell what was really causing my issues, but just eat right and exercise.  OK. That was helpful!  Back to square 1.

February came with the flu.  My husband became ill with it, and within 24 hours of him just coughing in the house, I became very sick.  I had 103 degree fever and chills, but even worse than that was the pain I was having all over my skin!  I got in the shower to wash up for my doctor’s appointment, and oh boy!  I was in tears…the pain from the water hitting my skin, and me just running my hand over my skin to wash, was unbearable.  He put me on an antibiotic and Tamiflu, even though my flu test came back negative.  After four days on the antibiotic, I developed thrush in my mouth, so I had to use an oral rinse. I ended up doing the rinse for 14 days because the thrush was so persistent in sticking around.

By this point, I knew that my immune system was so compromised that I tried to heal myself with supplements.  I was taking a Super B complex, a multivitamin, and a probiotic.  But nothing really seemed to be giving me what I needed–basically energy and relief from joint and muscle pain.

On top of all this, I am pre diabetic, so I was also taking Metformin. I had a conversation with my cousin, who happens to be a pharmacist.  She suggested that I try grape seed capsules or mango stein.  Both of these are all natural, which I liked knowing.  I began tracking my sugars, and what do you know, the grape seed capsules were working to keep my sugars well below normal!

I had made an appointment to go see a diabetes doctor, and because my levels were so good, she didn’t even require me to come back for  a follow up.  Which was good on the one hand, but also bad because she couldn’t really give me any hints about eating carbs.  She suggested a dietician that she sends clients to, so I put that name on my list to call.

March came, and we had some really warm weather.  I was outside one day, and the sun was shining and it was  warm, perfect weather. I decided to rake out a small area by our door, as the winter winds had left some leaves.   After only a half an hour of raking dry leaves and bagging them, I needed a two hour nap!  This was one of the many tipping points for me.  I was used to doing my whole yard in a few hours and here I was doing such  small area and getting so weary so quickly!  I so frustrated by all these things happening to me all at once, and yet I couldn’t get a clear direction on what to do to get well. It was like shooting at a target and missing every single time.

I spoke with some family members, and decided to make an appointment with a naturopath.  The woman’s office was very earthy…cozy with mismatched chairs, books about health and healing, and little frogs on the counter.

When I met with her, she looked at all my paperwork and interestingly, we had a brief conversation about the rheumatologist; she didn’t think very highly of him either! Naturopath : 1,  Lyme: 1.

She had me start tracking my food intake and also had me start on some more powerful multivitamins and echinacea as well as vitamin C.   Within just three weeks of being on these supplements, I noticed a huge difference in my energy level.  I was not weary anymore and I actually felt like doing things around the house.

Naturopath: 2, Lyme: 1.

After meeting with my naturopath, I was also able to get in with the dietician, and she too, was very helpful.  Her office is very sleek and modern, and she too wanted me to measure and weigh my food and track my liquid intake. So far, I have seen another positive side to my illness after making these changes. By making sure I eat at least 5 oz of protein with each large meal, I don’t feel hungry or get as tired.

She also suggested a book called The Whals Protocol, which is all about a doctor’s journey in healing her MS through healthy eating.  But not just any healthy eating–a very specific plan of 9 cups of greens and vegetables daily.  I’m going to buy the book this week.  I can’t imagine eating that much of veggies and greens, but what have a got to lose?  As it stands now, I do eat quite a bit more of veggies than I have ever done, so even increasing it just a bit more each day can only be more helpful to me in the long run.

Dietician : 2, Lyme: 1.

I am still discovering things as I go.  Most recently, I found that am highly sensitive to nightshade vegetables: tomatoes, potatoes, peppers.  The peppers actually make my skin itch!

So the  “You have a virus” diagnosis just really pushed me to confirm to myself that I do have lyme, and I will need to be my own best doctor to help myself.  I hope to continue to share what I learn on this experience with you.

Yours in Lyme Adventures,

TWL

 

 

 

 

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