Diagnosis

Since August we have been throwing around the idea of Lyme’s Disease (LD).  I would look at Lyme information and dismiss it, then come back to it again and put it off again.  The cases of LD that I’ve heard about have much more physical ailments than Rebecca, so I just didn’t think this is what Rebecca had.  But I decided to do a bit more reading, inquiring and learning and was slowly learning that Rebecca’s symptoms did fit into the LD category … but LD covers pretty much everything and is called “The Great Imitator” because it is often mistaken for other disease, so I wasn’t too convinced.  But in the back of our minds we kept thinking that maybe LD was what she had and we had just caught it early enough before it got as bad as the other cases we had heard about.

In August I had Rebecca fill out the Horowitz Questionaire for LD and she scored 36 (which suggests a possibility of a tick-borne disorder) … she has since filled it out three more times (in November and January) and each time she needs to add more symptoms, which increases the score.  Reading about LD made me begin to question some things we had just dismissed as unrelated or “growing pains” in the past year.  From time to time Rebecca would complain about pain (bear in mind she doesn’t complain too easily), one time in her knee, then after a week or so she’s quiet again and a little bit later she complains about her back, or her jaw (we thought her TMJ had returned), or her neck.  Reading about LD made me realize that this could be classified as migrating pains and that stiff and sore neck is a symptom of LD.  For a period of time during the summer Rebecca complained that she couldn’t get enough air and that her chest hurt. At the beginning of her dizziness she also complained about her vision doing funny things.    Interestingly, people with LD are often misdiagnosed with EBV (aka Mono) and/or Chronic Fatigue Syndrome

The reality is that we live in a tick infested area (ticks moved full force into this area about 6-7 years ago, until then I had never seen a tick in my life) and in the back of our minds we could not shake the fact that about 4 ½ years ago, on April 18, 2013, when Rebecca was in Grade 5, I pulled a largely engorged tick off Rebecca during the middle of the Music Festival.  Knowing little about LD at the time we did not keep the tick to be tested.  Exactly one month later, on May 18, 2013, Rebecca woke up that Saturday really sore and as the day went on she was unable to walk and we brought her to Emerge.  Not much was accomplished at Emerge that I can recall.  We had to go home and come back again on Monday to have some further testing done.  Over the weekend Rebecca slowly improved and by Sunday night was able to walk again.  When we returned to the hospital on Monday I insisted that we have Lyme testing done.  The doctor was not in agreement, but I would not give up and so they did the testing.  We were told it came back negative, although I never seen the actual report.  I did not realize at that time how inaccurate those tests were.  We followed up with a rheumatoid doctor, but with her symptoms gone and not reappearing the whole episode was soon forgotten.

For years Rebecca has struggled with fatigue, always needing a lot of sleep, being frustrated by how tired she was and how no matter how much sleep she got she never felt better.  We had begun to accept this as just being Rebecca and had always assumed it was part of the fact that she suffers from depression.  Now we’re not so sure anymore that this is the case.    Other little things that we just accept as Rebecca also started to fit into the picture, like how much hair she is always losing … I can never understand how she still has so much hair on her head when I see the brush loaded with hair every time she brushes it.

As we looked at these different possibilities, we still put off testing for LD … or should I say “really testing”.  We had our pediatrician order the Canadian testing, but we knew that it would not likely tell us anything since the Canadian testing is known to be inaccurate – and it came back negative as we expected.  We researched on where to get more accurate testing done and learned that Arminlabs in Germany was the most up-t0-date as far as testing goes.  We have since learned that Igenex in the US is doing the same testing now, but in order to have testing done there you have to have your doctor sign the requisition.  Arminlabs does not require a doctors signature.  Since testing for lymes would cost us $775 we held off until we had exhausted all the possible tests we could think of to give us an idea of what was bothering Rebecca.  As we sat on the fence we finally decide that we had to spend the money and do the test so that we would have peace of mind that we had rules out Lyme’s Disease.  It was recommended to test for co-infection that often come with LD, but since that would cost an additional $750, we decided to stick with just ruling out LD. 

On December 4, 2017 we took Rebecca to have her blood drawn and shipped it off to Germany.  For the next 5 days Rebecca felt more sick, her cheeks were pink again and she was constantly checking her temperature with the thermometer thinking that she had a fever, but each time it registered fine (which reminded us that she would do this when she was first ill in March/April as well). 

We were impressed with how fast we had the results, they were emailed to me a week later and thus began some even more indepth reading as I tried to understand what they were saying.  One part seemed to say she did not have LD and the other part said she was positive.  For the next few days I search through the internet to try find an answer I could be confident in, but I couldn’t find it.  So I moved on to trying to figure out who to see who could give me an answer I could be confident in.  This in itself is a huge task.  The reality is that Infectious Disease doctors do not believe in Chronic Lyme Disease, so we are stuck going to private practices.  The further reality is that you have to weed through which of these private practices is truly interested in the patients’ health and not their money.  The biggest reality is that LD is not something you want to fool around with, if that is what it is then it is only going to get worse with time and so finding good treatment is important, but everyone has a different idea of what good treatment is and all this biology reading if frying my poor brain.

We found a doctor in Richmond Hill and got an appointment before Christmas.  She felt that Rebecca’s immune system is suppressed and she could have LD due to the positive band (39kDa), but it was her opinion that it was more likely a co-infection/another tick-borne disease and so we should try to get testing done for co-infections, or it could be that a co-infection is covering the LD and once it is eliminated we will see a stronger LD presence. She gave us a list of co-infections to test for and suggested we see our doctor to try and get them done through OHIP.  Rebecca’s pediatrician gave us a referral to an Infectious Disease doctor, and all my reading tells me that there is no point waiting for them to help us because it’s not going to happen.  Back to the drawing board we went to try and figure out how to get this testing done, which led to more reading as we still did not have a conclusion on whether this is LD or not. 

Over the Christmas Holidays I closed my computer to all medical research and took a much needed break from overdosing my brain in medical jargon.  But unfortunately my taking a break does not mean that Rebecca’s symptoms took a break and so as soon as the holidays were over I was back at it again.

Through a couple other Lyme’s patients I got connections to some good LLND (Lyme Literate Naturopath Doctors) to get a second and third and fourth opinion on what Rebecca’s tests all indicate.  I am so thankful that these doctors were willing to answer my emails or call me to talk about things.  The end result is that we have now communicated with five doctors and they each say that the blood work shows Rebecca’s immune system is compromised, that she has a positive testing for borrelia (official name of the lyme bacteria) band 39 kDa and that her history and symptoms are very suggestive of LD – especially the paralysis she had in 2013 and her migrating pains. 

Our reading has told us that testing is a nice tool, but for LD it is not always accurate.  They are getting better at testing and using various ways of testing, but they just can’t rely on testing at this time.  A couple doctors have suggested more testing options we can do, but they will all say that LD is a clinical diagnoses based on what a patient tells them.  Regardless of what the numbers say on the testing you still have to interpret the data and it boils down to clinical interpretation and the skill of the doctor you see. 

At this time we have been told that Rebecca has Lyme’s Disease and the only way we will confirm this is by starting treatment and seeing how she reacts.