Answers Explained (LD Post #5)

What in the world had happened? Why were so many things wrong with me? I had Lyme disease that went untreated for many years. I also had co-infections (often when people are bit by a bug infected with Lyme disease, that bug is also carrying other infections) that I may have had for just as long. Who knows? Maybe I had been bit multiple times? Whatever the case, my immune system was worn out from trying to fight off the Lyme disease and the co-infections. It was so depleted, it was unable to fight off the viruses that I'm sure my body in the past had sufficient antibodies present to keep in check. A tapeworm decided I would make a good host because of my barely functioning immune system. I started developing nutrient deficiencies and food allergies. All of this happened because it was too much for my body to handle.


We started treatment right away. I went on antibiotics for the UTI and she started me on nutritional supplements. I took something to kill the tapeworm. She told me to cut dairy out of my diet completely - and that I would probably notice the joint pain in my hips go away (a very strange symptom of food allergies in my opinion). She gave me a symptom chart to fill out everyday, to track what was happening with my body. 


Oh, and I forgot to mention - she was another doctor that did not take insurance. There is a big, strange cloud surrounding Lyme disease that scares the CDC, health insurance companies, most doctors... and many of them deny  the seriousness of Lyme disease, if they are willing to even diagnose it to begin with. It's absolutely baffling to me. Maybe I'll post more on that another time. Anyway, because of this, most doctors that know much about Lyme disease don't take insurance because (I think) they can't treat the disease when their hands are tied by insurance companies who tell them what they are allowed to give to patients and how long they can treat them for. The commonly held opinion is that 1 month of antibiotics will take care of Lyme disease, and that chronic Lyme disease doesn't exist (in other words, 1 month and you're cured for good). There are many people that are living truth of the absurdity of this claim. (If you're interested in knowing more about others' opinions on this matter, there's a great documentary out called Under Our Skin and it's available on Netflix Instant Queue). But enough about that for now.


I think in the beginning I was seeing the doctor every 2-4 weeks. I started on antibiotics for the Ehrlichiosis infection. We didn't start treating the Lyme disease right away, because you have to get the co-infections out of the way before you can effectively treat the Lyme disease. We started with the Ehrlichiosis (out of our 3 choices of co-infections) because my test results were very high - the highest she had seen in a very long time. And she suspected it had been causing my headaches.


I took pills and pills and more pills. I cut dairy out of my diet and noticed a drastic improvement in my joint pain. 


She sent me to a hospital in Manhattan to have a brain CT scan and a brain Spect Scan, to check to see if the Lyme disease had crossed the blood-brain barrier and entered my neurological system. Thankfully, it had not. 


She retested my ANA (the test commonly used for lupus) and this time it was positive (these tests can fluctuate). For all intents and purposes, I did also have lupus. But her opinion (and I've heard this elsewhere) is that it was Lyme-induced lupus. Usually, lupus is treated first and foremost with steroids to suppress your immune system because your immune system is overactive and attacking your own body. But one of the worst things (in my own opinion) for a Lyme patient is to take steroids because your immune system is struggling to keep up as it is. You need to support it rather than suppress it (remember back in one of my earlier posts, when the first rheumatologist told me he could put me on a "safe" medicine to help me feel better? I'm pretty sure it was a steroid, and that could have severely worsened my infection). So we decided to continue treating for the co-infections and Lyme and to just ignore the lupus. I wasn't noticing any new/abnormal symptoms different than what I had already been dealing with anyway.


At some point, we tested my Ferritin level and that was low. Ferritin is basically your body's storage of iron. I started on Iron supplements.

I took probiotics to try to help my body replenish the good bacteria that were being killed by the antibiotics I took every day. 


We retested levels and started seeing improvements. My co-infections were decreasing. The viruses were decreasing. My nutrient deficiencies were improving. The tapeworm was gone. My headaches were greatly diminished along with my joint pain. My energy level was better. By this point, we're somewhere around the end of 2008/beginning of 2009. 


But I've skipped part of the story - of when I moved back to Florida and met my husband-to-be. Until the next time...