Beyond the Bite
Hi, my name is Gabriella Schneider and I have Chronic Lyme Disease. No, not just Lyme Disease, Chronic Lyme Disease. There is an enormous difference, and I am here to prove to you, and all the naive doctors out there that yes, it does exist.
So what is the difference between plain old acute Lyme and chronic Lyme? Well for one thing, Lyme spirochaetes are not the only thing I am fighting. In fact, besides around the full moon cycle when bacteria get “rowdy,” it is the multiple other complications caused by the once active Lyme that I am battling. Doctors are now realizing these tricky spirochaetes carried by ticks can look like, or pose as, more diseases than any other known bacteria.
When I was bit we are not for sure. My neurological Lyme doctor agrees it was sometime when I was very young (7 yrs of age perhaps). Symptoms of early, acute Lyme started around the age of 12, but it was not until the summer of 2011 that my immune system gave up fighting and I literally collapsed.
Most people think that when I say I have been suffering from Lyme Disease for a long time, migraines, joint pain, and the standard bulls eye rash come to the forefront of their mind. However, the symptoms for Chronic Lyme patients are much more severe then a few lazy, “pajama days.” For me, the multiple complications started with my late stage neurological Lyme creating small nerve damage throughout my body. From this I have autonomic neuropathy (paralyzation of my small intestine), damage to my kidneys and thyroid, and severe orthostatic hypertension (no blood pressure from sitting to standing, causing fainting). Though there are many more issues caused by the Lyme being in my body for so long, these three main problems caused an unstoppable downward spiral of other complications; major surgery for a collapsed celiac artery/large hiatal hernia (blood flow unable to go into my stomach), Severe SIBO (small intestinal bacteria overgrowth), H.Pylori infection, yeast infections, Lyme co-infections Babesia and Bartonella, chronic fatigue syndrome, tapeworm parasites, Aeromonas Hydrophila bacteria infection, both hyper and hypothyrodism due to damaged pituitary gland, gallbladder disfunction/stones, arthritic joint, bone, and muscles, clogged lymphatic system, severe leaky gut, mast cell activation disorder causing uncountable allergies to food/environmental factors, and the list goes on….Some of these issue have been helped by an IV infusion from my Lyme doctor. Others did not present themselves till later on in my illness, once another factor was patched up. For the most part, the major symptoms I struggle with on a daily basis now are low blood pressure, thyroid disfunction (yes, I do take meds for it now, but not for life), extreme fatigue and exhaustion (I feel like the walking dead), GI inflammation, swelling, and pain due to leaky gut and contributing infections, joint/muscle/bone pain, chronic fatigue, and allergies.
If you have ever been ill, you know that getting into seeing doctors even remotely worth it is a long and hard process. This is where I discovered my love for food and cooking. While waiting 6 months to see my first major doctor “out of the system” (because the “system” doesn’t believe in me, or any other patient for that matter with an “untreatable” health problem), I spent most of my time bed ridden, sleeping, or at least trying too, but failing due to many painful reasons. It was through these rough hours I began watching the Food Network and Martha Stewart show, studying their techniques and tricks, and researching recipes online. Out of sheer determination and drive (and my loving mother’s helping hand that got everything set up and helped me literally sit upright), I baked my first pumpkin cheesecake. Though I had only ever baked a few times prior, everyone loved it, and I have never looked back since then.
As you would imagine lack of blood flow to my stomach, small nerve damage in my small intestine, reoccurring bacterial infections, leaky gut and the allergies, inflammation, and pain caused from these differing factors, does not leave one able to eat very easily. Before I hit the brick wall in 2011, I started noticing eating gluten and dairy would give me severe, week long reactions. Little by little, as I got worse and worse, more food groups began dropping out as well. Though there has been a lot of experimentation with trial and error about what to eat, I have come to realize that the paleo diet suites my body the best. Because of ever changing, ever growing food allergies, it simply would be easier to tell you what I can eat, as supposed to what I cannot. Low FODMAP to keep SIBO at bay, and no nightshades to help my liver and joints, are also a permanent part of my diet. It seems the more “up and coming” name for this is the Autoimmune Paleo diet.
For those of you who find what I just said completely foreign, you are one of the reasons why I am writing this blog. Not only do I wish to shed light on Chronic Lyme Disease (and the life altering results of a disease ignored by the majority of the medical community), I also wish to share information about true health, and the diet and lifestyle that support it. Most people do not seek or use anything but conventional medicine, and though I am not against it, I do believe there is life and healing beyond simply masking the underlying problems of any health issue. Western medicine has had its part in my journey, and in fact I am blessed with an endocrinologist doctor who happens to be top 10 in the country. However, it would not be an exaggeration to say if it were not for my families persistent and self advocating personalities, I would not be where I am today, or even “here” in general. The latest treatment that we are trying (since everything else has failed) is the PK Protocol which I have previously written about, as well as a Chinese herbalist doctor in NYC, with whom I am also receiving acupuncture (my new love). Though my journey with a chronic illness is not over, I do believe through Jesus Christ, you can overcome any obstacle or trial in life.