Doctor #17

I see Dr. X. and finally, FINALLY, I might be in the right place. It is a good day to see him because I am on Day 2 of my period and I can feel the toxicity in my body. I am practically doubled over in excruciating pain from the poisonous feeling in my abdomen. I am so hesitant to have hope anymore, because each time I see a new doc I think this will be the one who helps me get well. I finally feel like I am with someone who is speaking my language, and all of the tests I have been wanting doctors to do all along are finally going to get done. He is sending my blood to Igenex to be tested for the lyme bacteria, and he suspects that based on my symptoms I possibly have babesia and bartonella as well. He is doing a battery of tests; stool testing, saliva testing and urine testing for toxicity. He is doing the IgG (immunoglobulin) tests for food intolerances, which I have read about and are different from the standard "skin scratch allergy tests." I had asked my allergist about this previously and they told me they didn't do this test. It is possible to have food intolerances that would not be considered a typical "allergy." The food intolerances are potentially what further make me feel toxic and make my muscles get inflamed any time I eat one of these foods. He is testing me also for a host of other bacteria, some I have never heard of and no one had thought to test me for before.

I read my journal to him from the past year, and how each time I was on doxycyline I clearly got better. It is obvious to both of us that the antibiotics were making me well. His theory though is that I am getting sick again because perhaps the doxy addressed the Q fever but clearly didn't address co-infections.  I tell him the doxy was brutal on my stomach and made me extremely nauseous, so he decides he will put me on minocycline right away and that I am to come back in 4 weeks for my test results and to see where we go from here. He gives me supplements for yeast (because of the antibiotics), sleep aids, and something for the potential nausea. I am losing track of everything I am going to take in a day. I am also given a diet to follow, but luckily I am already pretty much following this so it won't be too difficult to do. It is easy to take sugar and things I used to love out of my diet when I know the painful consequences of eating these things.

He tells me that every single woman in his practice, it doesn't matter if she has lyme, lupus, chronic fatigue, epstein barr, etc gets much more sick during her period. He tells me that menses puts the body in a more vulnerable state, and that anything you are keeping in check during the rest of the month, will rear it's ugly head when you menstruate. Ovulation can do the same thing. He says we need to do a multi-pronged approach to the healing, and that the problem thus far is that I have been working on getting one thing healed at a time, but that then something else takes over and I continue to be sick. We must get my immune system back in shape so it can stay "on top" of the various infections. I am anxious because I know what putting antibiotics into my body will do; yeast infections and nausea. On the other hand, I am not sleeping at all again and having nightmares. But I remember that the doxy made that go away. I am at the starting line again so I am digging my heels in and gritting my teeth. I am determined to win.

Pain trumps ego

I spend 7 days with a headache that has me in bed, fetal position, unable to move. There are hours of relief in between because of Zomig nasal spray (prescribed for migraines), in which I can function, but otherwise, when it comes back, I can barely breathe. It makes me nauseous, my neck and shoulder are stiff and swollen, my uterus and lower back hurts, my muscles burn and ache, my upper back is inflamed and burning. It's a party in my body.

I am still on lots of supplements and they are still definitely making a difference, but when this headache comes and I am so sick for so many days, I wonder again if I need to go back to a lyme disease diagnosis. It seems like at this point after a Q Fever diagnosis (which in theory is gone because of the 4 months of doxycycline), and now 2 months of supplements, I shouldn't be feeling like crap on a daily basis. I am definitely better, but still not the healthy person I was before I got sick. Every day there is something; burning in my muscles, twinges, pins and needles, painful upper back, muscles that feel tired and sore, not sleeping again, irritability, depression, and searching for words. F@#K!

I decide to see Dr. X, an integrative medicine specialist, who was actually recommended to me a year ago but I didn't see him because I had a doctor and felt I was being treated. Dr. X comes highly recommended again and so I take that as a sign I should see him. I'm waiting for an appointment. I fill out the 20 page intake paperwork and it is the most comprehensive I have seen. There are questions on there that not one doctor asked me ever in my journey. I also take that as a sign he knows what he is doing. It is depressing also though to be preparing for yet another doctor's appointment, having hope that maybe this doctor will have some reasonable and helpful ideas as to how I can stop feeling like crap. I WANT MY LIFE BACK!

I spend a weekend feeling very sorry for myself. I cry for 3 days and can't stop. I think the prolonged pain has taken it's toll and put me on my knees. This seems familiar though because I've been here before. Finally, I have a meeting with myself and decide that I can keep crying or I can take matters into my own hands and get moving. I go grocery shopping and buy only healthy, organic foods and make a promise to myself that I am going to eat no sugar, no dairy, no bread, no glutamates, no aspartates, no preservatives etc, for the next month. I may not be able to control what is happening in my body, but I sure as hell can control what I am putting into it. I decide that I am going to start going for long walks again, and find a way to exercise more, even if it's just slow stretching. I will think of this as the Olympics of my body, and so whatever it takes to make me well, I am going to do it.

The silver lining in all of this pain is that I realize my ego has shrugged it's shoulders and taken a hike. It's kind of a relief. That amount of prolonged pain is so intense that it demands attention and literally everything else goes away. I can't read, watch TV, or even talk on the phone. The only thing I can do is lie there and get through each painful second, which seem like an hour, waiting for it to subside. It makes the moments when I feel well so much more precious. Pain has kicked my ego's ass, and I suppose I am being held down by it because I still hadn't gotten the message. But after these last days of pain I am finally, after a year and half, starting to get it; slow down, stop resisting, mindfulness, stop being so hard on myself, relax, stop trying to control everything, give in, give over, breathe. Terrifying.

Under Our skin Screening and LDA/Columbia Conference

The screening of Under Our Skin goes well. I think there are maybe 40 to 50 people who attend and what's nice to see is people who don't have lyme have come to educate themselves about the illness. My boyfriend, KG, helps me set up and put out all of the lyme brochures and pamphlets, and my sister and parents come to support me. KG hasn't seen the film, and I know it's a lot to take in. When the film ends there is sort of a stunned silence, and I know the film has gotten it's message across. I don't think anyone is quite prepared to watch the film and to learn how incredibly debilitating the disease can be. And also to learn that it's not just about "borrelia burgdorferi" (the lyme bacteria) anymore. But it's also about co-infections, that patients have to actually fight to get care, and that doctors are losing their licenses because of the care they do give. I meet a woman who attends the screening who also has Q Fever, which validates for me I possibly did pick it up from a tick, and not in Ireland. I wonder if it is becoming a more prevalent co-infection too?

I attend the Lyme Disease Association and Columbia conference in Philadelphia. It is a 3 day conference with lyme disease doctors, specialists and others with experience with lyme. It is informative but also depressing for me. I feel overwhelmed by the amount of information, and also that here I am with all of these people who are so incredibly intelligent and fighting lyme on the front lines, but I am still sick. There is a woman who is an entomologist and she tells us that from her research they have found that ticks are now in 26 of the 50 states, and that most are now carrying many different bacteria. She tells us that Rocky Mountain Spotted Fever takes only 10 hours to infect someone. Something else she tells us is that ticks can find humans 5 different ways; our CO2, our movement, body heat, vibration and sound. Wow. That really creeps me out! Another piece of advice she gives which I will NEVER forget; if you have been hiking or in an area with tick exposure, when you get home make sure to put your clothes in the dryer and do NOT leave them on the floor in your room next to your bed. While you are sleeping the ticks will find their way to you because of the above 5 reasons!

What is frustrating too is being at the conference and knowing that despite all of this fantastic research and scientific/medical evidence of what is happening with ticks/patients, it is not getting to the doctors fast enough so that they are able to recognize lyme disease in their patients and thus treat them in a timely way. There is still so much ignorance, resistance and fear in the medical community, even though patients are right in front of doctors, sick, and getting worse. I realize that is why it's so important for patients to continue to fight for awareness, better treatment options, and also on the political front.