Positive Lyme Test Finally! & Hormones Influence on Lyme Test Results

Part I

Ever since I first got very sick four years ago, the lyme question has haunted me.  Although my intuition told me I had it and that lyme was the silent, insidious bacteria inside of me that was keeping me from getting well, my continued negative test results made me doubt.  The negative test results also kept my doctors from treating me, except for one doctor in the beginning.  But that treatment didn't get me 100% well.  I have, at this point, probably seen more than 25 doctors.  Even my current doctor, who is amazing and treated me for babesia, never treated me for lyme.

But still, I just keep having a hunch that the current state I am in, though well, isn't good enough.  I am also one of the lucky ones who has amazing family and friends around me, "you know who you is," who keep encouraging me to listen to my intuition and to keep seeking answers.  So many don't have this support which makes them even sicker, because being denied one's own reality is maddening.

I read about Advanced Laboratory Services because another lyme patient tells me about it.  The best, most informative information has come to me mostly through other patients.  I had asked my doctor months ago to get these lab test kits and he did it right away, even though he hadn't used them with anyone else.  I am so appreciative that he is so open minded.  I don't remember why we didn't test me then, but I think we got side tracked because I asked to be given something for bartonella, thinking that I was possibly dealing with that.  Also, because I am relatively functional about two weeks out of every month now, it's easy to get distracted and forget how much pain I'm in during a flare.  Advanced Laboratory Services test also requires that one be symptomatic for the blood draw and so each time I didn't get tested during a flare, I had to wait for another one!

(A sidebar regarding lyme tests:  lyme tests are UNRELIABLE.  The two tiered standard approach with the ELISA and Western Blot are known to often return FALSE NEGATIVES.  These are the two tests I was tested with many times in the beginning.  What these tests are looking for is whether or not the patient has created antibodies to the lyme bacteria.  However, depending on the timing of the test, the patient's overall immune system and other factors, oftentimes the result will be negative.  My weakened immune system, hormonal fluctuations, adrenal fatigue and timing of the tests I did previously all contributed to negative test results.  Even Igenex, the gold standard for lyme tests which also tests for the antibodies the patient has made in response to the bacteria (not the bacteria itself), returned a negative test for me.  Advanced Laboratory Services tests for the bacteria itself.  And, I had blood taken while I was symptomatic.)

The last flare I have is incredibly painful and debilitating.  I am on the couch for days and it hurts to just breathe.  I can't eat for three days either because I am so nauseated.  This is really hard on the body too because any weight I've gained during my "healthy" days I immediately lose and thus lose strength.  I will myself to get to the doctor so he can do a blood draw while I am so sick.  And hallelujah, the test comes back POSITIVE.  I have read that a woman's menstrual cycle (hello, I have been saying this ALL ALONG) influences not only her flares but the probability of a positive or negative lyme test.  There is a great article about Dr. Marylynn Barkley, out of UC Davis who did research on hormones and how they influence the lyme testing that you can read here - Marylynn Barkley, Lyme Fluctuations, Tests, and Hormones.   If you are a woman who is experiencing painful lyme symptoms that are flaring around your period, or you feel crazy and your doctor isn't listening to you, read this.  And no, you aren't crazy.  You are sick and need to be treated.  LISTEN TO YOUR INTUITION.  I have been kicked into "early menopause" but now, because of this positive test, I can't help but wonder if I get treated and actually get better if my hormones won't regulate themselves.  And I am sending a copy of my positive lyme test to all of the doctors who told me I was wrong.

Part II - the protocol to eradicate these nasty bugs from my body...coming soon! 

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.

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.