Unfortunately this is only a summary of my chronic illness journey, it goes into more detail, which would take me longer to explain. So, here is my journey!
The past ten years of my life were stolen by an unknown illness that has worsened over time. I am a very happy, outgoing person, but I’ve struggled with OCD, thyroid problems, weight gain, stomach issues, and anorexia in the past and also currently.
I’ve seen 10+ doctors over the past decade and most of which had no answers for me. Therefore, I did my own research, sought out doctors who would listen, and fought for my health. Most doctors would tell me, “you’re so healthy!”, “it’s just IBS and there is no cure”, “you’re too young and fit to be sick”, “you’ve exhausted my resources”, etc. However, I was persistent because I knew that something wasn’t right.
My first self diagnosis was Celiac Disease about 5-6 years ago. I realized that even the smallest amount of gluten would leave me inflamed, bloated, having headaches, weight gain, and cause mouth sores, all of which would last up to 1-2 months. I eliminated gluten but was still having problems. I wasn’t about to do the biopsy because I would have had to eat gluten for 1-2 months. So, we did blood-work and I have the genes for it, and the doctor also labeled me with severe IBS.
To this day, I get incredibly ill if I ingest something that is cross contaminated and I avoid eating at restaurants or anything that I didn't prepare. I cook all of my and my husband’s food.
Following that, I felt a minuscule amount of relief, but was still experiencing stomach pain, bloating, and food intolerances. I had a colonoscopy, endoscopy, gastric emptying test, and still nothing. That is, until I did research on SIBO. Sure enough, I had it and went on two rounds of Xifaxen (over $5,000 per round), and have to stay on herbal antibiotics all the time.
I still struggle with relapses to this day, even with antibiotics and a low FODMAP diet.
After that, I began experiencing a lot of hormonal issues, so again, I sought out an endocrinologist. I explained what I thought was wrong and we did blood tests and an MRI.
I have Hashimotos thyroiditis and mine is incredibly hypo, along with also having a pituitary adenoma (benign).
They prescribed me Cytomel, which contained gluten! So I got incredibly sick, again! I then tried Armour thyroid.
I am very good at modifying my diet, and decided to try the Autoimmune Protocol Diet. I did it for a year and Unfortunately, it or the amour thyroid didn’t work for me. (I’ve tried it twice again since then and unfortunately have found little relief but it did help me pin point my specific intolerances). This doctor also believed that I may have Rhuematoid Arthritis, Lupus, and/or Premature Ovarian failure.
So, I found a Functional M.D. who was able to get all my prescriptions compounded and definitely gluten free! It is more expensive but it’s worth it not to get sick. We did a combination of T3 and T4.
Fast forward 6 months and again, I hadn’t improved despite an elimination diet, a healthy lifestyle, and medication.
We tested my adrenal glands and they were barely working. For that, I had to take herbals and a steroid (I still rely on these today).
That is when he brought up Lyme disease because of my symptoms.
Sure enough, part of my Western Blot was positive (no test is 100% accurate for Lyme and chronic Lyme), along with a not so good CD57 and EBV showing positive from a previous infection. So, we began treatment. We tried herbals first and I didn’t respond, then antibiotics and I didn’t respond. So, we tested for co-infections through IGenex. I was positive for Bartonella, mycoplasma pneumonia, and we also believe that I have babesia. We tried numerous antibiotics over the course of a year and found little relief with any of them. A combination of Docycycline and Azythomyicin (pulsed) seem to work the best for me, but I still don’t have much GI, anxiety, or neuropathy relief.
We believe that my Lyme is chronic and neurological. Meaning that I’ve likely had it for years or got bitten by a tick as a child.
Over the course of the year with Lyme disease treatment, I kept developing more problems, as I had over the previous years. My stomach has gotten progressively worse and I am unable to eat most foods without pain, inflammation, weight gain, and bloating. I was also diagnosed with Postural orthostatic tachycardia syndrome, Raynaud ‘s Syndrome, Candida, Histamine Intolerance, Gastroparesis, and my OCD has gotten worse.
I currently eat a gluten/egg/dairy/nightshade/seed/soy free, lo,w FODMAP, low histamine and Gastroparesis friendly diet. I found out recently that I also have Histmaine intolerance, which means absolute no alcohol, over 1 day of leftovers, spinach, vinegars, cured meats, and so many more healthy foods. I’ve tried many elimination diets over the years in hopes that I could heal my “leaky gut”, but unfortunately I haven’t responded well to any foods, even liquids.
My stomach problems have never cleared up and I am constantly bloated with stomach pain. I am currently seeing two Lyme disease specialists and continuing to do my own research. I am doing the Wilson Protocol for my thyroid.
Lifting weights and walking/cuddling with my dog (when I can) help my mood and with pain relief. I also am eating AIP again with a few reintroductions.
If you’re battling health issues that seem to never end, please don’t give up. I’ve had so many doctors give up on me, but I’ve never given up on myself and neither has my family.
I don’t usually share all of this because most people see me as a healthy and happy person. Invisible Illnesses are difficult to have, because people don’t tend to believe what you’re going through.
Cassandra