Week 2, Part 2 — Why do "healthy" test results often make Lyme Disease patients feel sad?

Why are Lyme patients so sad when they hear their tests results are "normal"? It seems like such a crazy response; wouldn't you want to hear that you're healthy? Many of you already know that many Lyme patients do not find out they have Lyme Disease until it has become "chronic," often because their doctors found nothing wrong with them initially.

They called us "healthy," "normal," and sadly, have even told us it is psychosomatic. Like any of us would want to be in this much pain or this ill! One woman I met couldn't even get out of bed to use the bathroom and doctors were still telling her nothing was wrong with her! (Many Lyme stories are filled with so much tragedy, it would take a novel to do them any sort of justice.) It's a common theme in Lyme Disease with many books, blogs and threads written about it, including a fantastic documentary on the controversy of Lyme called Under Our Skin. Having an "invisible illness" makes us very sensitive to people not understanding or believing us, especially our own doctors.

Lyme Disease is not a Syndrome, with no known cause or cure. It is a bacterial infection from a living organism. I've even heard a doctor say that he doesn't believe in Lyme Disease. What is there to believe? Imagine going into a doctor's office with a very sore throat. They look at your throat, listen to you explain your symptoms, then prescribe an antibiotic for Strep Throat (Streptococcus pyogenes, a bacterial infection.) Sometimes, the doctor will even take a culture to make sure, although these can result in "false negatives." In any case, imagine taking those antibiotics until they are finished, and then still having a sore throat.

Now imagine going back to the doctor and having him say, "The antibiotics should have worked. You do not have Strep Throat anymore — you must (because there is no other explanation) now have chronic pain in your throat as a result from the previous infection. You will suffer for the rest of your life from this ongoing, varying pain in your throat from the infection that you used to have, or think you had."

Of course, in most cases, this would be ridiculous. Most doctors would assume that the infection is obviously still present. But this is not the case with Lyme. Many doctors don't "believe" in a chronic Lyme infection, like it's a ghost or an extraterrestrial phenomenon.

Why, you ask? So many reasons: Fear. Politics. Frustration. Misinformation. Lack of training. Laziness. However, Lyme Disease is obviously not as simple as Strep Throat. It is a complicated disease that many doctors are not trained to treat. In other cases, people have found amazing Lyme literate doctors (LLMD's) who punch more hours on their time card than tick bites in Connecticut.

That being said, you can imagine now why Lyme patients need tests to show people, "Hey! I'm sick!" It stems from a deep desire to be understood and to need people to help us. Trust me, we've tried to help ourselves. And this can lead us to be sensitive to doctors not believing us, even when they've shown us that they are on-board and understand the intricacies of Lyme. Even when we've flown halfway around the world for a controversial treatment like stem cells!

So, when Dr. (Sudeep) Sharma (I never know whether to call doctors here by their first name or last name, since many seem to say their first name, but still say "Dr."…like I would be Dr. Kyla? Anyway…) came in to tell me the good news that all of my internal organs including my heart seem healthy, I almost felt a little sad. These are not necessarily tests that indicate Lyme, but the irrational emotion still creeps up. But instead of insisting that I am, indeed, unwell, I just sat and smiled. This doctor knows what I've been through. This doctor welcomed me from the other side of the planet and is fighting to get me well!

No, I am very happy to hear that all of my testing from last week (except low thyroid and the SPECT scan as previously discussed in my first blog) indicate a healthy body, as this means that I am at a great position to receive stem cells. I will show more improvements and am more likely to heal faster since I don't have as much damage to repair than other patients who come here. This is, indeed, good news.

Yesterday, I went to a local Bazaar called Dilly Haat, where a nice man offered to take pictures of my comrades and me. He struck up a conversation, cheerfully asking why we were in Delhi. Christine, who is in a wheelchair with Lyme, explained that she was receiving stem cell treatment and then pointed to me and said I was a patient as well. His response was simple: "Why? She looks healthy to me!" Yup, I do. It's our Achilles' Tendon. Normally, when people say this to me, I think to myself, "HA! Wait until you see what I look like when I'm healthy!" But this time, it didn't bother me. I just smiled and nodded; I understood. I felt peaceful about it. Soon, it won't matter anymore.