Sunday, June 27, 2010

Diagnosis - Q Fever

I see Dr. B. again and my Mom is with me. I'm here for the results of the last round of tests he's done for lyme, co-infections etc. I sit down with him and he says, "so, as expected, your lyme tests are negative. But you did test positive for Q fever." My Mom and I look at each other...what? I've never heard of Q fever. Q Fever is, according to Wikipedia "a disease caused by infection with Coxiella burnetii,[1] a bacterium that affects humans and other animals. This organism is uncommon but may be found in cattle, sheep, goats and other domestic mammals, including cats and dogs. The infection results from inhalation of contaminated particles in the air, and from contact with the milk, urine, feces, vaginal mucus, or semen of infected animals. Rarely, the disease is tick borne. [2] The incubation period is 9–40 days. It can be considered the most infectious disease in the world, as a human being can be infected by a single bacterium.[3] The bacterium is an obligate intracellular pathogen." More information can be found at the Center for Disease Control website at

Doing the math, I have potentially had it for 3 or 4 years. No wonder I felt like total crap all of this time! I either got it in Ireland, where I was often walking in the fields where there was sheep and cattle manure, OR, I was bitten by a tick in California. I shot 2 films in California that were done in the mountains, places where ticks were a plenty.

Dr. B takes more blood to re-test for the Q fever, lyme disease, co-infections etc. I am to come back in 6 weeks to discuss further treatment plans. Because I am stabilized and not getting worse, there is no reason as of now to panic and go back on the doxycycline. It turns out, too, that the first line of defense against Q fever is doxycycline. My previous doctor, Dr. Saviour, had put me on that right away (thinking I had lyme), and it turns out it was a game changer and life saver. I am still eternally grateful to him for being the first doctor who didn't make me feel like I was crazy, but believed that my illness was real and something that needed to be dealt with. I am writing a letter to some of the doctors from last year who were so dismissive of me, just to let them know that I do, indeed, have a serious bacterial infection. I think they should know for future reference not to judge someone on her age, gender, or "feminine issues." As if I made up 104 degree fevers. Stress ASS!

Lyme disease still hasn't been counted out entirely, but I am so happy to have seen a positive result for something. Interestingly, my sleep pattern has completely regulated in the week since that diagnosis. Whether I am really starting to be well, or that lifting the psychological burden of not knowing has done that I don't know. I feel like I have lost pounds of worry, that's for sure, and sleeping through the night is having an enormous healing effect on me.

I go to the hospital to get an echocardiogram because with the positive Q Fever test Dr. B wants to make sure my heart is okay. There can be heart complications (inflamed lining of the heart) with Q Fever.

I see an allergist to see if he can help resolve why I am still getting these stiff necks and headaches during ovulation/menstruation, and also sometimes when I eat certain foods. He is another "Dr. B", (now referred to as Dr. B #2), and he is GREAT! I wish he could be my all around doctor because he has such a great attitude. He sends me for MORE blood tests, and he also sticks a camera in my nose and down my throat. I do not recommend doing this for fun, ech! I am to see his colleague after I get the results back, because she is an allergist and immunologist. Somewhere in here between Dr. B #1, and Dr. B #2 I am going to get all of my questions answered and be on the road to health. I also have one more doctor to meet with, recommended by a friend's godmother. This doctor is a gynecologist/holistic healer, and I think she will be the perfect person to add to the team to get a resolution.

I have learned from this process it is a CHOICE to get well. You can be passive in your life and in your healing, and take whatever the doctors say as the definitive answer, lie down and be in pain for the rest of your life. OR, you can choose to FIGHT with everything you've got left in you and be an active participant in your own healing. I have wanted to give up so many times and have shed an ocean's worth of tears in frustration and fear. If not for my family, friends and boyfriend I would have chosen the first option possibly. Somehow because of their support and whatever fire was left in my soul, I continue to push forward, seeking answers, pushing my doctors and demanding I be heard. If I hadn't, I would still be in the dark, wondering if I have lyme disease, wondering if I have lupus, etc. Now, because I insisted that Dr. Saviour wasn't being aggressive enough, I have an answer! You must do this for yourself and listen to your intuition when it comes to your health. The choice could be a matter of life and death!

Tuesday, June 22, 2010

PA Senate Lyme Bill #1199, Harrisburg Hearing, Understanding IDSA vs. ILADS Guidelines

Lyme disease is a hot mess, and that's an understatement. For anyone who is new to the disease, you soon learn that diagnosis and treatment is not in black & white. I go to Harrisburg for the Banking and Insurance Committee Hearing for PA Senate Lyme Bill #1199. The purpose is to gain support from the committee to pass this bill which calls for greater measures for; the prevention and education of lyme disease in PA, the availability of information for patient and doctor from both the IDSA and ILADS protocols, that insurance cover costs based on treatment chosen by the doctor and that regardless of which protocol doctors choose to treat chronic lyme disease with, they will not be condemned by their medical board. ( A link to the right will guide you to the bill for specifics.)


IDSA = Infectious Disease Society of America -

1. Lyme Disease is not chronic
2. Long term antibiotics, anything beyond 14-28 days, (I was on them for 4 months), will not cure lyme disease

ILADS = International Lyme and Associated Diseases Society -

1. Lyme Disease can be chronic
2. Long term antibiotics are sometimes necessary

Insurance companies base coverage on the IDSA and CDC (Center for Disease Control) criteria for lyme disease treatment. Therefore, often when a doctor chooses to treat a patient beyond the 14-21 day treatment outlined by those organizations, insurance will not pay beyond 21 days. Patients then have to pay out of pocket for what can sometimes be exorbitant costs for their antibiotics. Also, there are cases pending now, most famously Dr. Jones in Connecticut, in which doctors stand to have their license revoked for choosing to treat patients in "unorthodox" ways, read outside the established IDSA and CDC guidelines. You can read both the IDSA and ILADS guidelines at the links to the right.

The hearing is informative and emotional. Julia Wagner, Chair of Montgomery County Lyme and LymeAction PA gives data and personal stories about how lyme is effecting PA residents. Meghan Gallagher, a 16 year old, and her mother testify about the devastating effect lyme disease has had on her. Pat Smith, President of the Lyme Disease Association, and who I have heard speak before, presents her data as well. The most powerful moments for me is when lyme patients in the gallery stand up and say what lyme disease has done to them and their families. There is a woman sitting down the row from me who can't stop twitching her legs and arms, and I notice there are people who have crutches and walkers. I look around the room and see myself last year in some of the lifeless, zombie like eyes of the others. This is what lyme disease does to people.

Doctors testify about their practical, clinical experience with lyme disease, and that treating patients long term is effective. They also present data and statistics on the occurrence of lyme disease in PA. Someone from the department of health testifies and is called to task by the committee because he doesn't have an answer as to why lyme disease is not being taken more seriously in the state, and why there isn't more education about prevention and diagnosis. The problem too is that the doctors themselves are not even as educated about it as they should be.

A gentleman from a company that represents many insurance companies presents his perspective. He is not very popular with the lymies. He says he has had lyme disease himself, albeit he had a rash and was cured right away. He says that had he known what he knows now, he would have taken the proper precaution, as if wearing long pants and long shirts will solve everything. He stands by the insurance company's decisions to base coverage on the IDSA guidelines.

The outcome of whether or not the bill will be passed is pending. However, it was empowering to see the light bulbs go off in the heads of each of the committee members as they really understood how devastating lyme disease can be. Chairman White said, "I am embarrassed to admit how little I knew about this disease until right now." And many times, when Senators recapped what they understood about the disease and made a relevant point that the lyme community has wanted to be heard on, the gallery would erupt in loud cheering. I am feeling positive about lyme disease and how it is going to be handled in PA in the future. And regardless of the outcome of this bill, I still plan to do my small part and educate everyone I know about lyme disease.

Wednesday, June 16, 2010

Hyperbaric Oxygen Chamber, Airplane Travel and Lyme Disease

A hyperbaric oxygen chamber is an alternative method I have read about that is sometimes used to help alleviate lyme disease symptoms. From How Stuff Works, "hyperbaric oxygen therapy uses a special chamber, sometimes called a pressure chamber, to allow a person to get high levels of oxygen in the blood. This means that the air inside the pressurized chamber is typically 2 1/2 times greater than normal atmospheric pressure. This leads to your blood carrying larger amounts of oxygen, and bringing this oxygen to organs and tissues in the body. By doing so, wounds, particularly infected wounds, can heal more readily." In terms of lyme disease, often people have a "herx," in which their symptoms are exacerbated following treatment. As the bacteria die off the immune system is aggravated and thus the symptoms worsen before they get better.

My theory is this...every time I was on an airplane in the last couple years I got very sick about 1 or 2 days after traveling. No matter where I was leaving from or going to, I got sick upon arrival. I traveled many times between Philadelphia, Los Angeles and Ireland and usually spent a day or two after arrival vomiting, headachy, and in bed with a very bad, painful, flu-like illness all over. I forever thought this was because I had a "weakened" immune system, and I assumed each time I traveled I had caught something on the plane. However, in retrospect, I had the same symptoms every time, and now knowing that I have lyme disease, I wonder if being on an airplane, with the cabin pressure changes when ascending and descending my lyme disease was somehow effected? Could it be that if it is correct that hyperbaric oxygen chamber treatment can effect the lyme spirochetes in one's system, that the pressure changes in an airplane's cabin could do the same?

It just seems odd to me that I never felt sick when traveling by car, or train or changing locations that didn't involve an airplane. I used to travel often by airplane before I was aware of any "lyme disease" in my life, and never got sick like that when I traveled. In fact, I often traveled for TV production which involved high amounts of stress, little sleep and long work days. I still didn't get sick like I have in the recent past. So, I'm just putting it out there that I feel like there could be some correlation between hyperbaric pressure chambers and how they cause lyme spirochetes to react in the body and airplane travel. Something to think about.

Thursday, June 10, 2010

Testing continues

I see Dr. B again and have now had 14 blood tests, all of which are still negative. In the meantime, I have some very painful headaches during ovulation again, with a swollen, stiff neck and shoulders. This time Dr. B draws about 6 vials of blood to test me yet again for lyme, all of the possible co-infections, as well as checking on my ANA (antinuclear antibodies for lupus) and my white blood cell count. I see him next week and we are to decide, despite what my tests say, whether or not I should go forward with 2 months of iv antibiotics. It is terrifying to sit in front of my doctor, who I am counting on to help me figure out what is wrong with me, and he is basically admitting he doesn't know at this point what the definitive answer is.

I visit with a new gynecologist, Dr. M. My older sister began menopause at age 44 and my younger sister is also having reproductive issues. Even though I had these tests last year and everything was normal, I am now having irregular periods and still experiencing excruciating headaches during ovulation. I am worried that there is something else going on beyond the lyme. My sister has read about women who are actually allergic to their own estrogen, and so now I wonder if this is happening to me. I am also having issues with foods, where I will eat a certain food and then I will feel very unwell all over the next day. Something that is interesting that happens is that during one of my ovulation "episodes," where I have the bad headache and swelling/pain in my neck and shoulder, I take a Sudafed (allergy pill) and all of the pain goes away within an hour. So now I wonder if there is an allergic reaction of some sort happening in my body, or the Sudafed acted as an anti-inflammatory and so that is why I feel better. The new gyno, Dr. M., is not very helpful. I ask him if he does hormone testing weekly for a month, so he can measure where my hormone levels are throughout the month. He says, "no." I say, "no? as in you won't, or you don't?" He says, "well, I'll test you for whatever you ask me to test your for, but I don't really do that." I decide right then that this is the last time I will visit this doctor, but I need him to do an internal and a pap just to make sure there is nothing urgent I need to address. He does them, so I am waiting for those results and hoping that everything is normal.

In the meantime, I will see an allergist and possibly an immunologist. I feel crazy again and almost can't believe it is a year since I started this blog and I am still writing about new doctors I am going to see. My Mom, in her infinite patience, wisdom, and kindness, reminds me that even though it HAS been a year, I have come so far since then. I try to stay in that positive head space, but can't help thinking sometimes that this is how it's going to be for good.

There is a lyme disease hearing in Harrisburg, PA, next week. I plan to go and hope I will feel well enough to do so.