I Stand Alone

Some days I just feel like this:

Lymie: Highway to Hell

Life stuff doesn’t seem so scary
after I looked death right in the eye
lying on cold bathroom tiles
and then decided to get up

I know what determination is
having nothing left inside
getting up every morning
even while I cry

I know what strength is
fighting from emptiness
because there is no choice
but to give it another try

I know what faith is
believing, in the pain,
that another day will come
and ease me from this hell

I know what hope is
holding onto silent air
praying at the end of this
that I will be well

Life stuff doesn’t seem so scary
after I looked death right in the eye
lying on cold bathroom tiles
and then decided to get up

Happy Thanksgiving - Grateful

I am grateful for the unending, unconditional love and support of; my sisters, parents, brother-in-law, nieces and nephew, boyfriend and friends. I am grateful for friends (you know who you are), who have continued to check in on me, make me laugh, remind me who I was before I got sick and not let that part of me fade away. I am grateful to have an amazing man in my life who fell in love with me even though I felt broken. I am grateful I am still standing after the past 2 years. I am grateful to have a confirmed diagnosis. I am grateful that I am lucky enough to have the amazing people in my life that I do. I am grateful that I got sick, because I needed to learn the hardest lessons and I wasn't listening before. I am grateful that I am privileged to understand what it means to honor and appreciate my body. I am grateful I truly understand what it means to say, "you don't have anything if you don't have your health." I am grateful that illness taught me what the real priorities in life are. I am grateful that illness showed me that the only things that matter in life are the connections I have with others, and to help and be of service to others. I am grateful that illness taught me perspective and that my heroes are now the doctors and researchers who are literally saving lyme patient's lives every day. I am grateful to have met other lyme patients, whose courage has shown me the way. I am grateful that I have the means to see a doctor who can help me, get the medicine I need, and to be in a place I can heal. I am grateful that this illness showed me I am stronger than I ever knew I was.

Igenex Test Results - Babesiosis Confirmed

I see Dr. X. for my follow up appointment. My sister and Mom go with me because they have been on this journey with me and are hoping, like me, we will finally get an answer. Up to this point, we have been going on the assumption I have lyme based on a clinical diagnosis. My Igenex test results show borrelia burgdorferi (Lyme) result and a positive babesiosis (co-infection). After a year and a half of limbo, too many doctors to count and questioning my own sanity, I have validation. I hear a character on a show say, "there is no place as lonely as not being believed." I wouldn't have known what he meant prior to this experience, but after having my own doctors make me feel like I am crazy, I understand. Lyme testing is unreliable, and there are many factors that come into play to determine if someone gets a positive test; timing of the test, the person's immune system, what kind of test, amongst others. Lyme patients who don't remember a tick and never saw a rash have to insist that their doctor test them, often to loud protests from said doctor. I had Bell's Palsy (paralysis of the left side of my face) which is a classic lyme symptom a year and a half ago. I asked the neurologist at the time if it could be lyme and he gave me a resounding 'no." I was eventually tested with the standard Western Blot and Elisa tests by various rheumatologists, always getting a negative result. What I didn't know then that I know now is that approximately 50% of patients who have lyme get a negative test result. If I had just gone to Igenex in the beginning, I could have avoided almost 2 years of pain, frustration and fear. And saved a lot of money!

Dr. X. also tells me that my cortisol levels are below normal range. In a healthy person, cortisol levels rise in the morning upon waking and slowly go down throughout the day, hitting a low point in the evening so one can go to sleep. My cortisol level is in a flatline, with no spike in the morning. This explains the severe exhaustion upon waking. When the cortisol doesn't go up, I have no energy to get out of bed. I asked every doctor along the way about my cortisol levels, and only one of them entertained the idea that there could be a problem with it. She tested me for it, but told me it "was fine." Perhaps at the time it was, but I have told my sister for two years that I have constantly felt like I am in "fight or flight" mode and that something is wrong. I learn from this experience to never doubt my own intuition again.

Dr. X. gives me Mepron and Zithromax (standard for babesia) and Hydrocortisone. The hydrocortisone (a steroid) is for the cortisol. There is no "synthetic" hormone of cortisol, like there is for progesterone or estrogen. But hydrocortisone, (in small doses), closely resembles cortisol and can help raise the levels. This, hopefully, will allow my sleep to regulate. It has been SO SO SO long since I have had a night's sleep in which I slept through the entire night without waking from nightmares, sweats, or noises. What a joy it will be to actually SLEEP. He also gives me some supplements to help balance what the antibiotics will do to my gut. I am now taking:
Kolorex & Probiotics (candida)
GI Caps (for the gut)
Vitamin D
Potassium/Magnesium
Mepron
Zithromax
Hydrocortisone

I feel like I have been in a dark tunnel for two years. Once in a while a very tiny shaft of light would burst through in the form of a day here and there of feeling good, or the love of my family, friends, and boyfriend. Along this journey, I have been so deeply depressed. Some days there has been no hope and I had no idea how I was going to get through the day. Now that I have a confirmed diagnosis I can finally see a big light at the end of the tunnel and have something good to move towards. I can allow myself the luxury of thinking what it will feel like to actually run again, or have the energy to get through a day. I know I still have a hard road ahead while I fight to recover, but at least now I am not in some infinite limbo. I have hope in my heart again for a future that I couldn't see for a long time.

It's My Life

"I just wanna live while I'm alive." Love these lyrics. Because living like this is not living at all.



It's My Life lyrics
Songwriters: Bon Jovi, Jon; Martin, Max; Sambora, Richard S;

This ain't a song for the brokenhearted
No silent prayer for the faith departed
And I ain't gonna be just a face in the crowd
You're gonna hear my voice when I shout it out loud

It's my life
It's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life

This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow's getting harder, make no mistake
Luck ain't even lucky, gotta make your own breaks

It's my life
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life

You better stand tall
When they're calling you out
Don't bend, don't break
Baby, don't back down

It's my life
It's now or never
'Cause I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive

(It's my life)
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life!

From Hell to Glitter in the Air

I've just spent a few days in hell. I took the antibiotic minocycline and it made me so dizzy I couldn't stand up from the couch. When I did, I was weaving all over the place and bumping into walls. I was so nauseous I couldn't eat, but the ironic beauty of antibiotics is that I must eat to take them. Gr. My body is so out of whack again and I can't seem to get it back on track. I am experiencing severe pain, like I experienced 2 years ago at this exact time before everything came crumbling down. At least this time I am armed with information and know that a) I'm not going to die, b) I have a great doctor in my corner who is fighting this with me and c) family and friends know what is going on and I have a lot of love and support.

I feel like I'm hanging on by my fingernails when I am in that much pain and it is really hard to find the willpower to get out of bed in the morning. I lie there and for a few minutes I feel kind of okay, but I know that as soon as my feet touch the floor the pain will come rushing back. I don't know what the day ahead is going to hold for me, whether I will feel ok or be so sick by dinner that I can't move. I'm experiencing new symptoms now too that are scary; my actual bones are starting to ache, and sometimes when I walk the bones in my left foot have stabbing pains running through them.

My friend H, who also has lyme, encourages me to let go of the facade that I am strong and can do this on my own. She asks me where my fortitude comes from, and supports me being honest with people around me about how much I'm struggling. I don't know why I'm still doing this, but it's like I want to protect my family, boyfriend and people close to me from knowing how much pain I am really in. I think there is a part of me that feels like they can't handle that level of pain. But she reminds me that they are adults, and that they can decide what they can handle. So I have a conversation with my mother in which I fall apart. I have been holding it together for months, trying to mentally will myself into being healthy. I have been in complete denial that I am not getting better. It is just too hard to accept that I am going down the rabbit hole again and that this time it might be much worse. I have been trying so hard to be normal; social engagements, trips, and plans on my calendar. I've had to cancel most of it because I can't get up off of the couch. I have been in denial too about the symptoms that are coming back. I just can't accept that my body is betraying me again. My Mom takes matters into her own hands and calls Dr. X. He prescribes some painkillers and also suggests I come in immediately for a vitamin i.v. drip. My Dad takes me and it is the best thing I could have done. As soon as the drip gets into my body I feel a release that is beautiful. I start to get drowsy and cozy and my body feels warm and good. Who knew vitamins and minerals could make me feel like this!? It's a party in body, but this time in a good way!

I have an acupressure session that is long and intense. The women who do the session are true healers and touch knots and pain in my body that feel like they have been there for months. I feel release so deep that I alternately sweat and have chills. They touch certain tense places on my body and ask me what I am holding onto there. When they touch my solar plexus it hurts so much I almost throw up. The wise woman, D., says, "what is being held here?" I tell her, "my fear that I'm going to die and that I am so alone." As soon as I say that, the pain releases. Amazing.

I watch a "Behind the Music" on the artist Pink. What I am inspired by is that she has always done what she wants, said what she wants, and followed her gut. I wonder how she would handle having this illness and realize that she would probably do everything she could to kick it's ass and would become a spokeswoman for the disease. She is definitely someone who is not afraid to speak out. This performance at the 2010 Grammy's was incredible. It was vulnerable and ballsy at the same time. It reminds me that I can be both too.

Running in the Rain

I go to my college to support my friend D. as he is inducted into our Athletic Hall of Fame. It is a good and bad weekend. It is great to see people I haven't seen in a very long time, but it is also hard because I am very sick and struggling to get out of bed. I have the headache that is relentless, my neck is stiff, my period is killing me. By sheer force of will and medication I get myself to the dinner.

The dinner and athletes inspire me and remind me how when I was an athlete I went to practice every day no matter how cold, windy, wet, or nasty it was. It reminds me that I spent hours throwing a lacrosse ball into the net, lifting weights, running miles in the rain, just to be better. And sometimes, despite my hard work and that of my teammates, even after leaving our guts on the field and playing as hard as we could, we still lost. But the next day, I went to practice again. I didn't complain, I didn't think, "why do I even bother going to practice if we're going to just lose?" I showed up, I ran my drills, I joked with teammates, and I marched forward. It is like that with lyme disease; I do my research, I eat healthy, I try to get to yoga, do what the doctor says, take my medicine even if it hurts. But I feel like there are so many days that I lose. But thinking about being an athlete inspires me because after a loss I never would have made the choice to just quit. It never would have crossed my mind. If anything, it made me more fired up to go back to practice the next day and play harder.

I am so depressed today because I am now going to start another round of antibiotics and am waiting for test results yet again. But if the choice is to give up or move forward I realize that the athlete inside of me will not allow me to give up. I will keep relentlessly running in the rain.

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.

Delco Lyme Support Group

I have started a lyme support group for my county. It is the Delco Lyme Support Group for Delaware County, PA. Info is on Facebook as well!

When: Meetings are the third Thursday of every month, 7:00 PM

Where:  Brookhaven Community Center
2 Cambridge Road
Brookhaven, PA 19015

Contact: delcolyme@palyme.org

The Wellness Quest continues, I am a Hermit Crab

I see Dr. W, (the gynecologist/holistic doctor) for a follow up to get my test results. It is confirmed from my cortisol (stress hormones) and DHEA levels that I have adrenal gland exhaustion/chronic fatigue. What this means is that while in normal people their "fight or flight" response regulates after a threat goes away, my response is in constant "fight or flight" and never regulates. This explains beyond the Q fever why I had insomnia, because cortisol also goes up and down during a typical day, but for me it stays elevated when it is time to go to sleep and keeps me awake/wakes me up in the middle of the night! More information on cortisol in the links to the right. There are also other factors working here; my magnesium levels are low (this can contribute to migraines and headaches as well as inflammation), and my Vitamin D is low. I am relieved but also angry when I get these test results. I was researching all of these things a YEAR ago, and asking various doctors about this. However, many conventional doctors do not recognize adrenal dysfunction if you have a test result that is not very low out of normal range, or very high. I am somewhere in the middle of what is considered "normal," let's say the criteria is 100-1000, and I scored 750. Although I didn't score 50 or 2000, in the range of 100 to 1000, 750 is HIGH. Therefore, other docs didn't discuss any kind of adrenal dysfunction, but that is what I have been dealing with all along, and then Q fever came along with a nasty bacterial infection and I was SCREWED.

Now that I know what I am fighting, it is time to trust that the information I have is the correct information and that I must go with the flow and take the supplements I am given. I am now on NINE different supplements, some of which I take 3x/day. In addition to the supplements I was given last time, I am now also given Vitamin D, Magnesium and Phyto Caps for Adrenal Glands. It's a lot to remember to take in a day, but I say BRING. IT. ON. One silver lining in this is that my progesterone and estrogen levels are actually normal, so I am grateful that I don't have to worry about adding that to this already delicate mix.

I've been taking the supplements from my last visit for about 3 weeks now, and already I see a slight difference. The nausea that I feel all of the time is starting to dissipate, and I haven't felt sick from food for about 2 weeks. I ovulated last week and for the first time in a LONG time I had no inflammation in my neck, no tension headache and no toxic feeling in my uterus. Hallelujah! I did get a migraine, but it was easily dispelled with Zomig nasal spray. Dr. W. surprisingly tells me that I need to stop exercising. She is the first doc to say this. Her point is that vigorous exercise actually raises the cortisol levels and that is something I can't do right now. I am to take long, slow walks and to do very gentle yoga, and that is it. She also recommends that I start a meditation practice, because a major part of the cortisol issue is stress and negative emotions. She is not the first person to recommend meditation, so it's time I listen. It's amazing that always worrying about the really stupid, small things in life contributed to making me so sick.

Right now I feel like a hermit crab between shells. I am no longer the person I had become when I was living in Los Angeles, so I don't identify with my past self at all. However, I have no idea who I will be in the future. I am that vulnerable hermit crab, growing but not knowing where I'm going to end up. My therapist told me that part of the problem is that I have always identified myself through whatever job it was that I was doing. And now I have no job, nor any prospect of what it is I want to do, and therefore I feel lost and with no identity. She says when people say, "oh, what are you doing?" I have to be okay with saying, "nothing." It is in the letting go that I will find myself.

Diagnosis!

I speak to Dr. B on the phone and he tells me after 22(!) lyme tests that are negative, he is willing to put the lyme diagnosis to rest. He says that I definitely had Q fever (see link at right for more information), and now the antibody tests for that are leveling out, so that means that the Q fever bacteria are leaving my body. However, I will always test positive for Q fever for the rest of my life, as I have now created the antibody to it. I am forever grateful to Dr. B. for being smart enough and aggressive enough to continue testing me until we had an answer.

I meet with Dr. W, yet another gynecologist, but also a holistic healer. She incorporates Eastern and Western medical philosophies into her practice. She was recommended to me by a friend's godmother. She is really fantastic, and spends an hour with me, letting me lay out all of the details of my illness over the past year. She isn't even fazed by everything I tell her, and she is totally no nonsense. At first I am a little taken aback by this, but then decide I respect her completely direct approach.

She tells me that besides my Q fever, she believes I have the following; leaky gut syndrome (which explains all of the nausea, headaches and diarrhea), autoimmune dysfunction, and adrenal gland dysfunction. Ugh!!! These are all things I have researched over the past year and have had one doctor after another tell me are not happening (other than the autoimmune disease). In terms of the autoimmune dysfunction, she doesn’t feel I have a “weak” immune system, but rather what she believes is an overly active one. She explains that with the overly active immune system, my body is basically identifying any and everything that comes into my system (including food!), as a “threat,” and therefore attacking it. She says this is why I get so sick often after I’ve eaten, why it feels like I have to “expel” everything, and then I feel better after I do. My body is literally identifying the food as an enemy and wants to get rid of it! She feels the hormonal pain at ovulation and menses is being caused by these three things simultaneously; the leaky gut, the autoimmune dysfunction and the adrenal glands. She says all of theses things cause inflammation, and then when you are ovulating there is an inflammatory response when the egg is released, and thus MORE inflammation and no wonder I am in so much pain. FINALLY someone explains to me why the hell I felt like I was dying during ovulation and Day 3 of my period. She says, “add to that the Q fever, and your body just couldn’t handle all of it.” I feel such a EUREKA moment I almost start crying in her office. Wow! What an amazing feeling to have that little thing in my gut, my intuition, just know all of the pieces of the puzzle finally fit! ☺

I ask her about getting pregnant after having Q fever. Reading the literature about the disease it says that the bacteria in the mammals that carry it lives, in females, in the reproductive system and causes those mammals, when pregnant, to abort. I explain this to her and she says that although she doesn’t know about Q fever her understanding is that I would only have to worry about that if I had an active infection. She also, very directly, tells me that she is actually more worried about my age in terms of getting pregnant than she is about Q fever. Depressing to hear, but the truth. She asks me if I plan to get pregnant some day. I tell her yes, hopefully in the next few years. She says it’s important for her to know this, because there are certain supplements she won’t put me on now.

She has a game plan for me – more blood tests, testing my FSH, LH, Vitamin D (I was told often when I thought I had lyme disease this was something that should be looked into, but no conventional doctors did), testing my magnesium levels as well as DHEA, cortisol, TSH, T4 and T3. All things I know I should be tested for. Someone finally gets it!!! And she has put me on the following supplements:
For the “leaky gut”: L-Glutamine, Parashield, Oil of Oregano, New Chapter Pro Flora
For my immune system: Pro Omega Fish Oil, Kaprex A1

In the meantime, I have some auditions and get booked on some acting gigs. It is a totally different experience for me these days. I used to get so anxious about everything, but now that seems to be a thing of the past. My illness has taught me what is really important and now standing in front of a bunch of people I don’t know who are judging me doesn’t matter to me anymore. I think too what I have learned is balance. In L.A. it is so easy to get so completely out of balance. And the entertainment world there does nothing to encourage keeping one’s sanity. I am grateful I found my way home, even if illness is what got me here.

I read a quote in a Joel Osteen book that is sitting on my boyfriend’s coffee table, “do not let your setback be your identity.” I like that. I think I am moving away from “being sick,” and can start to identify again with “being well.” Joy!

Q Fever, Rocky Mountain Spotted Fever, Allergist & LA Memories

I see Dr. B #1, much sooner than I had anticipated. He tells me, AGAIN, my lyme tests are negative. But, again, this time I also have a positive test for Rocky Mountain Spotted Fever. He feels this could be a false positive though, and takes blood today to check that. My test for Q Fever has gone from a 1:128 to a 1:32, so he feels that it's most likely leaving my system. I am to be tested for that again in 2 weeks. Between the therapist, Dr. B., weekly blood tests, paperwork etc, I sometimes feel like taking care of my health could be a full time job! If only I could get paid...

I see the allergist/immunologist Dr. A. She is also my nephew's doctor. This is a follow up for the allergist I saw a week ago.
Dr. A. is a woman and she is one of the best docs I have seen. She is compassionate and really listens to my history. She tests me for food allergies, and I find out I have none! Although she does say that just because I don't have a food "allergy" that doesn't mean I don't have an intolerance to some foods. She gives me some new and interesting answers as to why I could still be having such severe neck pain at ovulation. She tells me that she has female patients who are asthma sufferers, and that for some of them their asthma is much worse at ovulation. So she says she agrees that I could be having a flare in the symptoms during ovulation, and wonders herself what the hormonal connection could be. Another theory she puts out there is that possibly the Q Fever bacteria has settled in my neck, and during ovulation my system is weakened further and I thus see a flare.

I have a tentative date for a screening of the lyme disease film, Under Our Skin, at the end of September. The county I live in, Delaware County PA, is underrepresented in the lyme community, but being that we are in Southeastern PA we are part of the area that is the hardest hit by lyme disease. Even if I save one family or person from the pain and frustration I have experienced, it will be worth it.

I hear a Killers song and "Yellow" by Coldplay on the radio in my car, both of which remind me of my life in Los Angeles. The five years I was there are starting to feel like a dream to me. The songs make me melancholy and I find myself crying off and on for a couple of days. I wonder if, now that I am finally on the road to health, I have the space in my heart to mourn who I was in that life. Even though LA was hard often, there were good times and it always seemed exciting because I was in the city in which I could fulfill my dreams. Right now though, I still feel like I am a spectator in life. Friends are moving, buying houses, getting married and pregnant. I feel like I'm standing still and everyone is moving forward around me. And while I am thrilled that my friends are pregnant and can't wait to share in their joy, it is hard because I truly don't know what having Q fever and going through what I have means for my reproductive future. I don't even think my doctor knows what to tell me, and that is scary!

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 www.cdc.gov/ncidod/dvrd/qfever.

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 related...my 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!

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 vs ILADS GUIDELINES

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.

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.

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.

Illness is a Gift, so sayeth Bret Michaels

The lead singer of Poison, Bret Michaels, is in the news a lot lately. First an appendectomy, then a brain hemorrhage, now a "warning stroke," and the discovery of a hole in his heart.

I was a Rock of Love fan, (his reality show on VH1,) then Celebrity Apprentice, and now I am watching him on Oprah. While my friends think it is hilarious that I have a celebrity crush on him one thing that keeps me watching is that, despite his whoring himself out to reality television, he always seems to keep a healthy dose of being grounded, along with a sense that you get he is in on the joke. He also always seems to have an amazing attitude, boundless energy, and aggressive determination. What little I know about him tells me he didn't get where he is by sitting around and letting the world pass him by.

In his interview with Oprah, he is talking about when he was in the hospital with his brain hemorrhage and how it clarified for him what is important in life. Love. Love of family and friends. Resetting one's priorities. It reminds me that last year I was in so much pain I thought I wasn't going to make it. The idea of death, up to that point, had always been an intellectual exercise. Like, "I wonder what it will feel like? I know it will happen some day, but what will it be like?" I had the experience of truly feeling in my body that I could die. That what was wrong with me was something I didn't understand and couldn't fix by myself and the light bulb went off in my brain..."oh, I could die." I felt so vulnerable in that, and yet there was also a sort of letting go.

This illness can knock me down, or, I can choose to allow it to open me up to possibilities that I never would have even imagined. I keep fighting to get back to "my life," whatever the hell that was. Clearly it was not serving me because I got so sick I couldn't walk. And I continue to be unwell, because I keep thinking in the old pattern of the "shoulds," "have tos," and "musts." This illness really will have kicked my ass if I have gone through all of this only to return to the exact same thought patterns and way of doing things I did previously. So thank you Bret Michaels for reminding me that illness is a gift!

Trying to march forward in life with lyme disease

My new lyme doc, Dr. B., wants to take blood every week for the next few weeks to see if he will get a positive lyme result back. Today is my 3rd week in this process and I am going there today to get more blood taken. Meanwhile, I do not feel well again. I am tortured by insomnia, nightmares, alternately sweating and freezing during the night, muscle aches & twitches, and a constant, slight feeling of pressure around my head. Despite this, I determinedly march forward in my life. I take a trip to NYC with a good friend to see some Broadway shows. We see Billy Elliot, the musical. It is magical. For a couple of hours I completely forget that I don't feel well and am transfixed by the music and energy on stage. The actors are having so much FUN, and it makes me ache for that feeling in myself again. Everything has felt so heavy in the last year.

I am given the opportunity to attend a casting workshop with a successful casting director. I'm excited for the opportunity but also nervous because I have been out of the loop audition wise for a year. The night before I barely sleep; tossing, turning and sweating. I am like a zombie the morning of the workshop. I am determined to go anyway, because I so want my life back. It is informative but when it is my turn to perform a scene the casting director's feedback is that I am "very low energy and seem defeated." It is hard to hear this, but I know he is right. I AM defeated sometimes. I'm disappointed afterwards and really just want to give up on everything. It is a wake up call that I am not ready for life to come swarming back in yet. I need to accept this and continue to do everything I can to get better.

I continue to coordinate a local screening of the lyme disease film Under Our Skin. May is Lyme Disease Awareness Month, so I want to try to get it screened during that month. It looks like I may have gotten a location to do so! I will post the information when I have the details confirmed.

Lyme Disease is a marathon, not a sprint

I go see Dr. B., for a follow up at the wellness center. I take my Dad with me because he has been out of the loop and doesn't fully understand what lyme disease is. Dr. B. tells me all of my co-infections are negative as is my lyme test. I was expecting this, but it still disappoints me. Imagine actually wanting to hear that you have a confirmed illness! Anything is better though than wandering around in a sea of uncertainty. He explains to me that because of how the spirochete lives in the cells, it is not unusual to continue to get negative tests. His strategy is to test me weekly for the next few weeks, to see if we will get a positive test. He is also continuing to create a paper trail of my symptoms, something the doctors must do for insurance purposes. This is crazy!

My sleep cycle is completely disrupted again. I explain to Dr. B. that it feels like my body doesn't want to stay asleep. It takes me an hour or two to fall asleep and I am again waking at 4 am and just lying there. It is torture to be so exhausted, but my body won't allow me to sleep. Dr. B. says that is my nervous system keeping me awake. I have been off of doxycyline now for about 2 months. The symptoms, while not intense, are slowly creeping back in. My muscles are violently twitching, I am irritable and feel disconnected, and I can feel that burning, creeping, toxic feeling in my muscles.

I see a therapist now. She is helpful and understanding. I think what she has given me mostly is validation. Just to hear someone say to me, "yes, what you have gone through is hard," makes me feel like I have been heard and that is contributing to the healing process. Also, it has been nice to speak to someone outside of my inner circle. As much as I know everyone loves me, I feel like sometimes it must be hard to hear from me about constantly not feeling well. When someone says, "how do you feel?" I don't know what to say anymore. It's been a year since people knew something was really wrong with me, and it feels like sometimes at this point, people must think, enough already! My Mom has been a constant source of support, but she has the entire family to listen to and sometimes I just want to give her a break. The therapist has said to me, "it's hard to acknowledge sometimes that we are valuable enough for people to continue to support and love us, despite our illness or faults or whatever." So true. It's this feeling of "people will love me while I am sick to a point, and then I really should start to get better or their patience will go away and they will get tired of it." And me!

I am anxious and restless for life, but I know I still don't have the stamina to go at it like I did before I got sick. I feel like I am keeping whatever is wrong with me at bay right now, like the 4 months of antibiotics pushed it back, but it's still lurking in there. I feel like if I were to allow myself to get very stressed, and tired, I would be right where I was this time last year. I am terrified I will be curled up in bed again, in the fetal position, in so much pain I can't move. I tell my sister that I am in hell, and I can't believe this still hasn't ended. She reminds me that it is a process, and says again to remember how far I've come since last year. It is just so frustrating, because I want to go sprinting hard at life again. But lyme disease is a marathon.

PA Senate Lyme Bill #1199, Wtr/Spring 2010

http://www.thepetitionsite.com/1/lymeactionpa

If you are a Pennsylvania resident please go to the above site and sign this petition. The link is also to the right under "links."

Thank you!

Spring - Wellness Center Visit

The flowers and trees are bursting open. It's been a long time since I've seen Spring like this. Los Angeles has color, but it's different from the East Coast Spring I was used to growing up. All of this color and abundance reminds me that life will go on.

I go to the Wellness Center near me with some real trepidation. The night before my appointment I looked the doctor up on-line and found a bunch of negative reviews. I was torn as to whether or not I should even go to the appointment the next day. My mom says, "let's make our own decisions and form our own opinions." So we go, and I am glad we do. Dr. B. spends 2 hours with us and he is the most informed doc I have met with thus far. He has read over my history and through all of my lab tests, he explains things to me on my lab work that no one else has, (he tells me my thryoid is slightly elevated, but no one had mentioned this to me at all) and he decides to do 2 tests that I wish I had done a year ago; the C6 peptide test as well as the PCR test. He says he is going to send these to MDL in New Jersey. MDL is known for more sensitive criteria with the lyme testing (like Igenex which is on the West Coast). Dr. B. explains to me in detail also what this "sensitive testing" even means. I wish that Dr. Savior had done these tests in August of last year. Dr. B. explains to me also that even with these tests/more sensitive criteria my results could still be negative. He also looks at my ANA counts and asks about lupus. I explain that I was treated for lupus for about 6 months with no real improvement. It was only when I went on the antibiotic doxycyline that I felt real positive changes. He looks at my white blood cell count, which was a 2.2 on my last Dr. Saviour test, and says he, too, won't treat me further until a hematologist looks at that. He also says that if he treats me and puts me on iv antibiotics, he won't put me on Rocephin (kind of the standard for iv antibiotic treatment), knowing that I am susceptible to a low white blood cell count. Dr. Savior had also decided the same thing. If I go back to him, he says he won't put me on doxycycline again, but most likely Cipro.

KG and I go to see Dr. K., a hematologist. He takes blood and gives me the results immediately. My white blood cell count is now at a 4.4, and all of my other cell counts look normal. He feels that my fluctuating white blood cell count is due to the heavy doses of antibiotics. He gives me a clean bill of health (blood cell count wise), and says he also recommends I do not go back on doxycycline again. KG is in the appointment with me, and he now knows more about my physical health than any other man I've been with. The things he has heard and dealt with in the few short months we've been together makes it feel like we've been together longer (like in dog years). I tell him how much I appreciate his patience and support, but he shrugs it off, saying, "you'd do the same for me." It is interesting to me how illness has allowed me to do something I never seemed to be able to master before in relationships; to be myself. I don't have the energy to put up any kind of facade, or to pretend to be someone I am not to make a relationship work. It is a revelation.

The tests results will come back at the Wellness Center in about a week, so I will know more then. There is part of me that is praying I will have a positive test result so I can stop questioning what is wrong with me and get on with aggressive treatment and be done with it. And if the test is negative? I don't know yet.

Birthday

I go to the headache center in Philadephia. KG is with me. The appointment takes 3 hours and the waiting room is packed when we get there. It reminds me of being in Los Angeles and every appointment was overcrowded and impersonal. The receptionists can barely be bothered with us. I am given a psychological test with 338 questions...it takes me an hour to fill out. I will have to send a reimbursement form into my insurance for this. We are taken in by a nurse who does an intake interview with me, and by the time we see the doctor have been there 2 1/2 hours. The doctor is nice enough, but when I ask him if migraines can be caused by food intolerances, he says, "no, a lot of people think that but that doesn't really happen." WHAT? He suggests magnesium (this was also suggested to me for muscle aches) as a preventative measure and then prescribes Zomig nasal spray for the migraines. This is supposed to be THE headache center and I was hoping for way more information and answers. KG and I are not impressed with this experience.

I see Dr. S., and my white blood cell count has gone down even further to a 2.2, and my ANA level is up again. My Mom is with me and he tells us he is concerned enough with this that I must see a hematologist. He also backtracks AGAIN, and tells us he would like me to see a rheumatologist and an infectious disease doc. Oh my goodness, I could just scream or cry. This time last year I saw both of these docs, and my journey began. Both the infectious disease doc I saw and the many rheumatologists were not supportive and made me feel frustrated. In fact, the infectious disease doc he recommends to us is the same doc who was so dismissive of me last year. We tell Dr. S. that we do not want to go back to these doctors right now. We decide that I will see a hematologist and depending on that assessment, will move forward from there either treating me with more antibiotics or not. I am so scared that the doc who has been treating me for lyme disease for 7 months is now bactracking and making me question what is wrong with me. I just want to get better...and antibiotics were making me so. I believe I have lyme disease, all of my symptoms point in that direction. But I am being told again that these symptoms can also be indicative of lupus. I realize that I am officially in the "lyme black hole," not sure if I have an inflammatory illness, or if I have inflammation because of lyme disease. This happens to so many people, and once I was on antibiotics I didn't think it was going to happen to me. Now here I am.

Today is my birthday. What a difference one year can make in a life. Last year on this day I went to work and then to acting class. I was looking forward to my birthday party with all of my friends in Los Angeles and I was rehearsing a play I was very excited about performing. One week later I was in the hospital. I realize that life is fragile, and that the things I thought were important turn out to not matter at all.

Los Angeles Heather calls to wish me a happy birthday. She tells me she is proud of me for the person I have chosen to be in illness, that I am not a victim. I need to hear this, because I constantly feel like I could be more proactive and more positive.

Despite having pain in my body and feeling like I am no closer to an answer than last year, I am grateful for so many things; the support and love of my family and friends, that KG, an amazing man, has come into my life, and for being home. My hope this year is that I will get better and get my life back. But I realize that my life will never be the same after this journey, and maybe that's actually a good thing.

Alone in the Night

Just two days after my amazing Michael Buble experience, I see Dr. S., and more blood is taken. We are checking my white blood cell count again and ANA levels. He mentions sending me to a rheumatologist and a hematologist again b/c of how low my white blood cell count and neutrophils (http://en.wikipedia.org/wiki/Neutrophil_granulocyte) are. I tell him I am so frustrated b/c it was exactly a year ago that this whole process started for me and I saw about 4 rheumatologists before I got to him.

It is 6:30 am and I have been awake the entire night very sick. I started getting a headache when I fell asleep, and so took my Fioricet and 1/2 a muscle relaxer. This served to make me extremely nauseous and sick. The headache turns out to be a classic, throbbing, migraine, so the Fioricet does nothing for it. I spend the entire night in an enormous amount of pain. This was the cycle I went through each month last year before I ended up in the hospital. It is like my body is toxic again, or reacting to something I ate. It is also the last day of my period, so I know now that this is effecting me greatly. I used to think this cycle was a flu or something, but now I know better. Ironically, I was at Dr. S earlier this day, and told him these migraines weren't happening anymore.

When I am alone in the middle of the night and my body is rebelling against me I start to lose my positive attitude. I realize how alone I am in the battle in my body. Nobody can get inside there at 3 am and fix what is raging inside of me. I want to give up. I am so tired of feeling like this. It is a roller coaster. One day/week I feel good, then I get sick again.

My analogy is this...imagine there is something wrong with your car and you take it into the mechanic. He says, "well, there's something wrong with it, but I don't know what. I'll give you some oil and you put it in there when things seem bad." So you do that and you follow the mechanic's instructions. You assume your car will run efficiently now. So you make plans to go to work but on a random day the car just doesn't run. Now you can't get to work, and you know it'll take about 2-3 days for the car to right itself so it can function. You then make plans for dinner with friends. You have every intention of going. The day of the dinner the car breaks down again and needs to rest, and there is nothing you can do about it so you must cancel your plans. This is what it is like to live with lyme disease/chronic illness etc.

I am questioning myself now. DO I have lupus? Do I have fibromyalgia? Do I have lyme disease? I am so confused, and FRUSTRATED.

It is light outside now. I haven't slept the entire night. This is very bad for my immune system and robbing my body of the chance to heal. I read back over my posts and I seem erratic. One day I am at peace and positive, the next I am frustrated and hopeless. I realize this is lyme disease.

Home

I remember driving my car in Los Angeles, stuck in traffic somewhere, feeling so sick I thought I wasn't going to make it. I had a Michael Buble CD in my car and this song, "Home," would come on and I would cry every time, b/c I knew in my soul that I just needed to go home. Every part of me needed to be home to be healed. I felt so lonely. I was sick and didn't know it at the time, I had no man in my life, I was anxious and scared, I missed my family, and my body & mind were betraying me.

I see Michael Buble in concert and he is fantastic. KG takes me to see him for my birthday. He does what you expect of an entertainer; he really brings it ON, and he is funny, self deprecating and so incredibly talented. He lifts the audience to another place, if only for a couple of hours, and leaves us feeling like we have been a part of something special. He came out into the audience (KG and I have seats on the floor) and he is about 30 feet from us. He stands on a small stage in the center of the floor and sings an acoustic version of "Home." On this birthday that I didn't want to celebrate I find myself standing there, watching Michael Buble right in front of me, singing that song that meant so much to me when Los Angeles felt so hard. I AM home, KG is with me, and I am healing.

March, 2010

I feel like I am in the movie Groundhog Day, and every day feels like a repeat of the last. I have low white blood cell counts, I am off of doxycycline, I might have to go back on it, I have symptoms that come & go. It feels like I have been on this ride forever.

My birthday is in 2 weeks. This time last year I got sick the day after my birthday and I haven't been the same since. KG asks me what I want to do for my b'day this year and I tell him "nothing," because it is a painful reminder of the year that feels lost to me. My sister, however, reminds me that it should be a celebration of life, and how much better I have gotten. She is right. I am grateful that I had the means to come home, to take the time to heal, that I found a doctor who believed me and treated me despite negative tests, that I am not terrified of my period every month now.

In this 2nd round of doxycycline I have now been off of it for 3 weeks. I feel relatively good. The tension headaches are ceasing to be as intense, I am sure b/c I am off of the doxy. My sleep pattern is a little interrupted again, so that's something to be concerned about. My white blood count is STILL very low at a 2.4. Dr. S. will take blood yet again in about a week, and we will see if being off of the doxy for a month will bring it back up.

I go to the Jefferson Headache clinic next week. Also, I have been taking a multi-vitamin and plan to begin adding more supplements etc. New Jersey Heather has been amazing and sent me a list of supplements and KG did his own research looking for ways to boost my immune system. I am still pretty much off of sugar, it tastes way too sweet to me now. It is bad to eat a lot of sugar with lyme disease and only helps yeast and spirochetes grow.

A new friend, S, also a lyme patient, recommends something called trigger point injections for the headaches. S had to come home from California like me, and is living at home. She says these have helped her enormously. I am looking into this as well as acupuncture. The lyme community is supportive and educated b/c they have to be.

I read the book "What is the What?" by Dave Eggers with Valentino Achak Deng (www.valentinoachakdeng.org/preface.php). It is about a Sudanese man (Valentino) who is one of the Lost Boys...they were thousands of young boys who walked thousands of miles from Southern Sudan into Ethiopia to escape the war that ravaged their home. They were then sent to Kakuma, a refugee camp in Kenya, and many are now here in the United States. Valentino's journey and the death, chaos, and tragedies he saw in his young life devastates me. I realize how relative pain and suffering is; I have known comfort in a way he and these young boys never had the luxury of knowing and so getting sick in the way I did rocked my world. And yet, despite his experiences, there is a feeling of hope at the end of the novel; for being alive, for life, for the chance to love. I am reminded to embrace all of the good that I am fortunate enough to have around me and to remember that even in sickness there are things to be grateful for.

End of Doxycycline Round 2

I have been on doxycycline now for 2 months. I feel like the "lyme symptoms" are retreating, but am plagued with other, new symptoms; my back aches every day, I am horribly constipated, I am nauseous and these headaches haunt me all during my period. I see Dr. Saviour and discuss all of these symptoms with him, most of which are the result of the doxycycline. I also ask him what I can be doing to boost up my immune system and if there are supplements or vitamins I can take. He only suggests a multi-vitamin which really frustrates me. In the reading I have done in lyme books and on-line, it seems clear that there are two viewpoints to this. Some docs feel antibiotics are enough and that if these do not heal the disease, anything else is residual. In the other camp are those that feel antibiotics are not enough and that supplements and other alternative therapies are necessary.

Dr. Saviour then says to me in this appointment that I might need to see a rheumatologist! I can't believe he has said this. I feel like I am back at square one. When I was in Los Angeles and first got sick, I saw a rheumatologist and then about 3 more before getting the lyme diagnosis. Dr. Saviour takes blood again because he wants to check the white blood count and says he will call me immediately with the results. He feels the doxycycline could even be bringing it down.

Heather S., my friend in New Jersey, has gotten not only a positive lyme test back, but has tested positive for other co-infections. She has been great about funneling information my way and has been very supportive of me getting help beyond antibiotics. She is very sick now with her own treatment, but somehow fights harder than I do. When she suggests I need a new doctor, I am resistant. The idea of starting the search again, meeting a new doctor, going over my history of the last year, possibly having to get tested again for lyme is overwhelming. I am so tired of all of this. I spent months researching what could be wrong with me, and saw so many doctors. The experiences were not good and so I need to rally myself again emotionally and physically to find someone beyond Dr. Saviour if that is going to be needed.

The day after my appointment with Dr. Saviour he calls me very early in the morning. He says my white blood cell count has dropped yet again, to a 2.4. He is very worried and tells me to stop the doxycycline immediately. I was to be on it a 3rd month, but he wants me to stop. He wants to see if my white blood cell count will come up.

Doxycycline Round 2, 1 1/2 months into treatment

I talk to my friend Heather S. in New Jersey. She was a friend I knew years ago in TV production and she helped me figure out, at the time, that I was having candida/yeast problems. She has always been someone who just sort of shows up when I need help. We reconnected this summer when I moved home and she was suffering from undiagnosed fatigue and pain. She tells me she has been diagnosed with lyme. She had tests previously and they were negative, but the doctor she found sent her tests to Igenex. She has been in an enormous amount of pain and the fatigue has completely debilitated her. After 7 months of many doctors and misdiagnoses, here she is also with lyme disease. I am thrilled for her that she has a diagnosis, but know the road she is going to have to walk down. She is also now on doxycycline and I am checking in with her to see how she is feeling. She is always so good about comparing notes with me and giving me advice about what the doctors say. She already has some info for me regarding supplements. It is going to be interesting to see her journey alongside of mine.

I struggle with taking naps. I know that they are good for me and Los Angeles Heather and I figure out that when I take them I tend to sleep better at night. But I am in a constant state of guilt, still, that I should be doing SOMETHING. I'm sick enough that I can't work out of the house, but I am no longer so sick that I can't get off the couch every day. I'm sort of in this healing limbo. My Mom goes off to work each morning and says to me, "what are you doing today?" Even though I know she's just curious, I am defensive and feel like I should have a list of projects I'm going to tackle. Heather suggests that I think of naps as "preventive medicine" and that each time I take one it is getting me closer to recovery. i like that idea.

I am 1 month and 2 weeks into this 2nd round of doxy. I definitely feel different. I am doing gentle yoga every other day now, and I am having a night or two in which I sleep all night. I have 2 weeks left of this round and then I will have to see what happens in February. It is obvious to me that doxy makes me better, and I wonder how I am going to remain healthy after I go off of it again? I also intuitively feel like my immune system is shot, and I am going to have to do some research as to what I need to do to get it to a stronger place.

I make an appointment at the Jefferson Hospital Headache Clinic in Philly. I can't take these headaches that put me down for days every month. It's time to be as pro-active as possible and get all of this under control. I refuse to spend most of 2010 in bed. That was 2009! They tell me the first appointment takes 3 hours and there is a psychological evaluation. They can't take me until the end of March.

I see Dr. Saviour, again, and he takes more blood to check my white blood count. He tells me that my insurance has called him and is checking into my records. So basically I am on disability, which just about covers my expenses, paying $600/month for my health insurance with Cobra, but still paying co-payments, lab fees, etc., and now my insurance company is checking my records!? You gotta be kidding me.

Doxycycline, Round 2, 1 Month Into Treatment - January 7, 2010

I see Dr. Saviour and this time my Mom goes with me. It is so fantastic that she goes with me b/c she hears firsthand from him what I am up against. We discuss the lupus connection again, (he doesn't feel that is what I have now), what lyme does to people, and the difference b/t oral antibiotics versus iv antibiotics. Dr. Saviour explains that with the iv antibiotics they are more potent because they don't have to go through the stomach, like the oral antibiotics, which I am taking. Also, they don't make someone nauseous because of that. I am really struggling with the nausea again. It is overpowering sometimes. One thing that has come up is that my white blood cell count is very low and he is concerned about this. Blood is taken so he can gauge the white blood cell count again. When I call him, he tells me it was at a 2.7, and is now at a 2.9. Still low, but at least it hasn't gone down.

I experience a horrific headache about 2 weeks into the doxy. I am ovulating so it doesn't surprise me. This headache puts me on the couch for almost 2 days. I can't get out from under it. My Mom has to call Dr. Saviour and ask him to recommend something to help. This is the same headache that finally crushed me last year in April and drove me to the hospital. He calls in a script for a muscle relaxer and that, combined with Fioricet, FINALLY releases me from the pain. I barely sleep the 2 nights I have the headache, which makes the other symptoms (muscle aches, nausea, twitches, brain fog) more pronounced. When the pain comes back like this, I remember why I was so depressed last year. It is so debilitating I can't even watch TV. This headache has me in a chair with the heating pad on my head, tears just running out of my eyes.

It is one month into treatment now and I have 3 days of feeling like myself. I have so much energy I have to actually hold myself back from doing too much so I don't overextend myself. I do more in 1 day than I had sometimes been able to do previously in a week. And I am still not exhausted. It feels so good. The nausea is at a minimum. Like the last round of antibiotics, my body has adjusted and the medicine doesn't make me sick when I take it any more. When I look in the mirror, I see myself as I was before, so many months ago before I got so sick. There is hope in my heart again for living. I don't think I ever understood the power of hope like this before. That is why too it is so hard when the pain/sickness takes over again and I disappear behind it. I think the ebb and flow right now is even harder than just being straight out sick. To have hope and have it taken away, to have hope and have it taken away...

KG, now my boyfriend, gets his lyme test results back and as I suspected they are negative. I will be diligent with him in terms of being hypersensitive to any strange symptoms that emerge. I pray that they won't, ever. He continues to be incredibly supportive and understanding about this sometimes elusive disease. He asks if I've taken my medicine (sometimes I forget because I have to wait 1 to 2 hours after I eat to do so), is concerned when I am nauseated, puts no pressure on me to do anything beyond my limited stamina, and is completely on board with me.

It's interesting to see what sharing my story has brought into my life. Because people know I have lyme disease they almost always tell me of someone they know who has it, and want to share that person's story with me. Other friends have felt comfortable sharing their own stories of ill health or hard times. There is definitely light in all of this, I feel privileged really that people will share these things with me.

I see Dr. Saviour at the end of the 30 days of doxycycline. He takes blood again to check my white blood cell count. His theory is that since I am feeling good again, the white blood cell count will have gone up. He is very happy to see me feeling so well. He says however that the trick now will be to see how to keep me well when I am off of the antibiotics. I am given another 30 days of doxycycline, so I will be finished around the beginning of February. I am not looking forward to February if I am going to get sick again. If I do, I think we are going to have to discuss more aggressive treatment. I can't keep going through this. I want my life back.