Written by: Amanda Sosa Stone Co-Owner of Grounding Roots
Being your own medical advocate was a message I have learned and now own it and hope to pass on. Here's my story. I hope it inspires others to trust their gut and keep searching for answers until they find the root cause and not accept the diagnosis and medical prescriptions to mask the problems. My journey started 22 years ago but it really feels like it's coming to a fork in the road with some hope sprinkled in. Finally!
I never felt great as a child, but I didn't know at the time that the Life cereal and two heaping spoonfuls of sugar was the cause of feeling fatigued or passing out. Or an afternoon snack of just bread and mayonnaise wasn't enough to fuel me. Or the evening bowl of ice cream would cause me the inability to sleep soundly at night. I just accepted that I never felt 100% great. It wasn't until my mid 20's I even learned that eating the right balance of fats, carbohydrates and proteins was needed to feel energized. But even still, with that huge change in proper food balance, I wasn't 100%. Understand that it's been my saving grace and anyone with any ailment reading this please; please check your diet first because half of my symptoms were instantly removed by proper diet. I can attest to healthy lifestyle being the one thing that has kept me ticking this long!!!
Here's the real story I tell doctors as they evaluate me, as I have slowly learned what's critical to share. I started getting sick by my sophomore year of high school. I moved to college and got chronic chest infections and continued those into my adult life. Allergies were always to blame the doctors would tell me. At 26, I started to have leg and arm pains that radiated down that almost felt like electric shocks within my bones and then would go away as quickly as they came. Always being sore was a normal feeling for me. By the time I went to the doctor at 26 she acted as though I was a hypochondriac and said it was probably "nothing" and would diagnosis me with "fibromyalgia" which back then meant you had pains but no proof of it. To her surprise, my tests came back with two very high autoimmune disorders: Sjogrens and Mixed Connection Tissue Disorder with rheumatoid and lupus factors. What did that mean? It meant my body was attacking itself like it was an invader. No one could tell me what caused it but they could definitely tell me what drugs to take to help with the pain and even stop my body from attacking itself. The voice in my head said "if they can't find the cause why take the drugs?" So I refused medicine. All doctors were annoyed with me and basically pushed me aside since I wouldn't take the action they recommended. I refused medicine for 10 years. I couldn't get insurance at 26 for under $2k.
As I got older, the less I could ignore it. I delivered my first child with no issues but by my second pregnancy I was always sick, had preterm labor at 24 weeks (thankfully I had amazing doctors and went full term). I lost weight and dropped to 99 lbs after I delivered my daughter and experienced very bad postpartum. I also suffered from extreme Candida issues. No explanation just a diagnosis. Still coughing and in pain but accepting those as my normal.
At this point I had one of my best friends guide me to a doctor who didn't see me as hopeless. He did loads of blood work and finally started to put some of the puzzle pieces together. He found I had Epstein Barr, inflammation rate of 1,300, cholesterol of 90 (too low which explained the postpartum) and Mycoplasma (which was causing the lung infection and cough). He put me in touch with some amazing doctors and encouraged me to find a leading expert in Sjogrens to get more answers. So I went to U of Penn and saw one of the world's leading experts on the topic. He too had no answers other than a huge piece of the puzzle; he said "you do not have Sjogrens" because I failed all the clinical tests. Wait, What? 10 years of a diagnosis on paper and very expensive insurance with a pre-existing for nothing??? Did this mean I had a wolf in Sheep's clothing?
In the meantime I was recommended to manage my inflammation with a no sugar, no gluten diet. It was a life altering change. No more pain and I gained 15 lbs. The Candida also completely subsided at the time. My husband started juicing to help aide my recovery. It was why Grounding Roots exists today. These are the blessings I reflect on daily.
I went then to an infectious disease doctor who finally encouraged me to take antibiotics and antiviral medication to give my body a rest for a minute and allow it to simmer down. The die off lasted about 2 weeks and I had severe pain in every inch of my body. It was the bacteria dying off. I thought I was on the road to finally being cured and I was, but it was only a piece of the puzzle. This doctor then retired and sent me to the next doctor which would bring me to my most recent part of my journey.
I was recommended to Dr. Kalidas who immediately saw me and took me under his wing as did the original doctor. He immediately said he thought I had Lyme disease. I had never been bit and lived in Florida. So I took the lead and said I wanted to stay on my current course since I was feeling so good. That was 1.5 years of status quo. I was happy to be functioning at a "new normal" which was so much better than my old normal. However, I got so positive that I was being cured that I tried twice to go off my meds (antiviral and antibiotics) but would flare up within 2 weeks with extreme rashes and coughing (looks and feels like the day after the flu). All I wanted was to be healthy without drugs! But at this point I couldn't function or breathe without them, so I carried on as prescribed.
Just recently, I finally hit emotional rock bottom. I became very emotional, physically exhausted, my memory was beginning to fail me, my boss was questioning my work quality (which was never a problem to date). I went back to my doctor (which I started to avoid) and shared with him my status. More blood work revealed I was not getting better but worse. My cholesterol was now down to 70 which explained my drop in hormones. (Good: 110 mg/dL or lower - Borderline: 110 to 129 mg/dL - High: 130 mg/dL or higher). I was heading into the low direction which isn't talked about on the Doctor Oz show.
A few weeks later, I watched an Omega Institute video that caught my attention. It was on Lyme disease. The girl started describing her experience and within 2 minutes of watching the video I had a memory flash back to 10th grade of a bite I had gotten on the soccer field at Boone High School practicing before a game, in pouring rain and being covered in mud. The next day I had a ring around it. My mom and I assumed it was ring worm from the mud and treated it topically.
Fast forward 22 years later. I rang the doctor to share my "memory flash back" and he said with a smile I could hear "we finally have something pointing us in the right direction". I bought the book "why can't I get better" by Richard Horowitz. It was the book I needed. It confirmed in my gut this was the answer. I took the test and scored 76 (anything over 46 was said to confirm you had Lyme). I still wanted proof. We did a Western Blot test which came up negative. I was devastated. Then I had to do an out of pocket test from Igenex that finally delivered the missing pieces.
I have Lyme disease, really called Lyme MSIDS -which means you have co-Infections of bacteria and parasites that are attacking your body and your immune system and at a certain point, your body is forced to go into over drive and attack not only the disease but anything and everything that enters the body, which causes extreme food sensitivities and along with that, starts to attack your body because at this point, it's too exhausted to do a check point of who it's killing - insert my mental visual of my immune system in fatigues looking all heroic and proud but too tired and exhausted to properly do its job to its fullest. That’s why medication and treatment is the only hope we have on the horizon with no cure in site. It often mimics autoimmune diseases like MS or Dementia. They are smart little buggers that are considered to be 300 million years old - that's millions of years of knowledge on how to survive even while under attack. Attacking a body, that in all honesty, only carries the knowledge of 7 million years. That all sounds like a lot but here is an easy analogy: you have an investment firm with 30 years of knowledge vs. 7 years, which one would you bet your money with? Logically we would go with the more experienced, but any hopeless romantic would appreciate the underdog "hero" like any classic movie (insert visual from Bugs Life at the winning moment of triumph). I hold that optimism very close to my heart.
Along with bacterial infections, often also come co-infections of parasites like Babesia. My blood work shows results of anything over 40 for being "exposed" and mine is 160. Meaning, I've had it a very long time. HGA shows a recent exposure on my blood work which means I've had a recent bite (doubtful) or a common recent relapse which explains my decline recently.
Next step is new antibiotics and malaria medicine. I am still waiting on my doctor to give me a treatment. People, this is what good care looks like. Not a rushed call, but one that takes time to treat the person individually. We are all not the same and shouldn't be treated the same! This is a disease lacking a cure and all doctors who are Lyme savvy understand. Like any disease, all bodies and mindsets are not created the same so the results will vary. It's an over complicated body we have, but one we should start looking more closely at the mind, body and spirit approach.
Please understand this is not a disease the government recognizes as an epidemic. This is faster growing than AIDS, and not to freak you out, but is now being transmitted through blood transfusions (ask for screen blood if you need a transfusion) and possibly down the road could be considered an STD. It's been proven to be transmitted from mother to fetus (insert my own panic). My daughter is scheduled to be tested for this in early August (the earliest appointment).
I will never forget the date I received the good news (on a road trip with family pulled over so I could hear my doctor)...it's the day I found peace!!! In my heart of hearts I finally feel I can stop the hunt and start the fight. Two very different perspectives and one I am holding onto strongly.
Let's set the record straight I have the most amazing husband and family and without them I might have gone crazy (or crazier) on this journey without their support. I was blessed to find doctors who weren't the pill pushers but the seekers. I am grateful for everyone who helped my journey along.
The moral of the story is be your own health advocate, don't let anyone tell you you’re crazy (they are not inside your body) and keep searching for an answer until you know all the dots have been connected.
Sending anyone who had the patience to read this a ton of love and support for whatever you are dealing with (health, emotional, physical, etc) we are all dealing with something. There's always an answer and a solution...I know it and believe it!
This is not just an individual disease. This is an epidemic hurting our family, friends , neighbors and community. Please support Erin Alicia by clicking here.
Photo Credit: Mason James Photography