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My Journey to a Diagnosis

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My Journey to a Diagnosis of Chronic Lyme Disease #healing #chronicLyme #chronicillness #LymeDiseaseAs I sit down to write this post, I am realizing it has been ages since I have given one of these updates (it looks like June of 2016, to be exact).  In all honesty, when dealing with chronic health issues that you cannot seem to get a diagnosis for, you eventually just try to push them aside as much as possible and pretend they are not there.  Plus, nobody really wants to hear the same thing over and over again: x, y, and z are my symptoms and I don’t know why I have them or what to do about them.

In case you need a recap, here is a rundown of most of the symptoms I have experienced (some since college, but most beginning in 2012):

1. Chronic joint and muscle pain
2. Acid reflux/GERD/bloating
3. Cystic acne
4. Irregular periods
5. Hair loss (and not just from postpartum hormonal changes)
6. Headaches/fullness + bouts of blurry vision
7. Bladder pain/frequent urination
8. Depression, anxiety, panic attacks
9. Hypothyroidism

While many of these symptoms seem pretty unrelated to one another, I have always had the suspicion they had a common cause.  And now, I just might have my answer…

When we last left off with the health update in June of 2016, I was just about to go see a new-to-me functional medicine provider.  Prior to that, I had been seen by a family physician, orthopedic physician, multiple physical therapists, a rheumatologist, and a functional medicine-focused physician.  None of these providers had any real answers for me or strategies for moving forward, so you can understand my skepticism that things would be any different this time.

I had tons of blood work done, a food sensitivity test conducted, and a stool test ordered.  Long story short: several of my vitamin/mineral levels were off, I had food sensitivities/leaky gut, I was lacking enough “good” bacteria, I had issues with methylation, and I received a diagnosis of hypothyroidism.  We began to combat these issues with supplements, that pesky four-day diet rotation, and a strong probiotic + the most disgusting gut healing drink that I hope I never have to taste again.  I also began consistent chiropractic care.  By the time my care plan ended with this provider in the Spring of this year, my vitamin/mineral levels were looking pretty good, my thyroid was functioning at optimal levels, and my acid reflux was almost non-existent (even while pregnant!).  I felt good about this progress, but I still didn’t feel good.  My joint and muscle pain was still there.  I still had cystic acne and hair loss.  I was still experiencing bladder issues.  And I continued having issues with anxiety and general malaise.

I’m sure you know what happened next: I had a baby!  That, understandably, rocked my world in so many ways, so everything with my health kind of got put on hold.  But once I adjusted to my new normal, I knew I wanted to get my thyroid levels checked since they can easily change with the drastic hormonal fluctuations that follow pregnancy.  Instead of going back to the practitioner I had been working with for the past year, I made an appointment with a nurse practitioner who practices functional medicine- largely because she accepts insurance (the previous practitioner did not) and because she came highly recommended by several people I know.

On our first visit, I went through my usual spiel with all of my symptoms.  She drew blood to perform tests on my thyroid function, adrenals, vitamin/mineral levels, iron, and to run a CBC and Western Blot.  I met with her two weeks later to get the results.  She was pleased with my CBC and vitamin/mineral levels.  My thyroid also looked quite good.  She found my adrenals and iron store to be a bit off, but nothing too alarming and something she thought might improve once the real issue was addressed.  And that issue?  She diagnosed me with Chronic Lyme Disease.

Lyme?  Like the disease you contract from ticks?  Huh, I didn’t really see that one coming.  I don’t remember ever being bitten by a tick or having the notorious “bulls-eye rash.”  But after researching the heck out of it the last few weeks, it turns out close to two-thirds of people with Lyme never remember having those experiences either.

My current practitioner let me know that her diagnosis criteria and the CDC’s diagnosis criteria differ.  When you delve into the research on how to get a Lyme Disease diagnosis, you will see that it is pretty complicated, very controversial, and everyone has differing opinions on what constitutes a diagnosis.  A short summary: The CDC requires five positive bands (these bands represent antibodies to various parts of the Borrelia burgdorferi bacteria, AKA Lyme) on the Western Blot test.  However, their criteria was never created for diagnostic purposes and is actually quite flawed.  LLMD’s (Lyme Literate Medical Doctors), many Lyme researchers, and those within the functional medicine community come to a Lyme diagnosis much differently.

Many LLMD’s will say that if you have any bands come back positive at all and you have symptoms aligning with Lyme Disease, you should receive a diagnosis for the disease.  Some practitioners will look to see if you have any Lyme-specific bands come back positive and will then diagnose (because how else could you have antibodies for a part of the bacteria that is only associated with Lyme?).  As a result of all of this controversy, a lot of false negatives come back when testing for Lyme.  Plus, it is also possible to have Lyme and not currently have antibodies showing on the tests (but that is for a whole other discussion).

My own Western Blot test came back with two positive bands.  One of the bands is considered by many to be Lyme-specific.  With these results and my symptoms (especially the joint pain that has no other cause/fix), my practitioner felt confident when diagnosing me with Chronic Lyme (chronic because I have had the bacteria and symptoms for years).

How am I moving forward with this diagnosis?

I am doing a lot of research.  I also plan to follow my practitioner’s recommendation to use IV therapy with high doses of Vitamin C and glutathione.  I will, however, be waiting to tackle this issue until after I am done breastfeeding because I do not want to be detoxing and nursing at the same time.  And from there, we will see where the road takes me!  Diet wise, I am currently following a gluten-free, dairy-free lifestyle and will likely move back towards Paleo.  But again, I don’t want to rock the boat with breastfeeding, so I’ll likely continue eating grains until our breastfeeding journey ends.

I am feeling cautiously optimistic at this point.  It has been a five-year journey to get this diagnosis, and I hope it means I am that much closer to feeling better.  I don’t want to settle for just feeling okay.  In fact, I won’t.

My Five-Year Journey to a Chronic Lyme Diagnosis #ChronicLyme #LymeDisease #chronicillness Click To Tweet
{ 6 comments… add one }
  • Sarahd November 20, 2017, 11:50 am
    Do you happen to read Cass over at https://wholefully.com/lyme-disease/ ? You have a lot in common, especially right now!
    • ClnEatingVegGrl November 20, 2017, 2:12 pm
      Yes! I actually just talked to her about it on Instagram a few days ago. Ironic!
  • Erin @ Her Heartland Soul November 20, 2017, 11:16 pm
    I'm so glad you got a diagnosis! I'm hoping it's only up and up from here!
    • ClnEatingVegGrl November 21, 2017, 8:48 am
      Thanks, friend! I hope so too! Sure trying to be positive :)
  • Sarah November 21, 2017, 2:15 pm
    Hi--is it possible you could send me the name of the nurse practitioner who accepts insurance? Thank you!
    • ClnEatingVegGrl November 21, 2017, 3:52 pm
      Yes! I just sent you an e-mail.

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