June 24, 2009 at 9:59 am (my story, tests, treatment)
Tags: alternative, doctors
I was hesitant to even write about this experience, because who wants to admit it, but I wasted a lot of time and hope on something that I shouldn’t have. The reason I am telling you this is that if you are ill you have probably faced the same temptations I do, and maybe we can all learn something from my experience.
What exactly happened? I desparately want a cure, and I fell for the promise of one…
May 31, 2008 at 12:43 pm (diagnosis, my story, tests, treatment)
Tags: IgM
I had the privilege of meeting a wonderful infectious disease doctor here in Pittsburgh this week. She treated me as an intelligent person who deserved a say in my own care, and was willing to talk about and even consider the possible value of additional antibiotics. We ran tests to try and verify one or more of the hypotheses I’ve been talking about in my blog, and also discussed the role that my December-February 2006/2007 mold exposure may have played in my illness.
Wonder of wonders she then had the kindness to respond to some questions I sent her by email a few days later, by which time she had (1) read an article I mentioned to her as possibly suggesting the value of antibiotics and (2) had most of my test results back. She answered my questions and discussed both the article and my test results in the email and included a table with the full details. I was amazed and grateful.
Suddenly the picture seems much clearer .. and perhaps also more complex. The test results pretty conclusively say that I don’t have an auto-immune disease and that I have lyme disease. I was shocked by the latter, it is not supposed to be possible after the sort of antibiotic treatment I had, but the IgM (the test which shows current, active infection) was positive on my western blot, and in fact included markers that are highly specific to lyme. As expected, the IgG (which shows past exposure) was also positive.
I have begun researching mold in any case and have some questions about how it may have contributed or may be contributing to my situation. But the case seems very clear for a specific explanation of many if not all of my symptoms: the IgM test tells us that I still have an active infection. My gut was right.
October 31, 2007 at 12:05 am (diagnosis, my story, tests)
The path to my diagnosis was surprising at the time, though far less so in retrospect. At a time when my doctors were completely at a loss, and I had begun interviewing Massage Therapists to find relief for my symptoms. The third (and final) one that I spoke with suggested that I might have Lyme disease the very first time we spoke by phone. As soon as she made the suggestion I realized that it was indeed a possibility and called my MD/Homeopath to ask that she add a Lyme test to the bloodwork that she had just ordered on our 9/25 visit.
Sure enough, the ELIZA test, the first test typically ordered when Lyme disease is suspected, came back abnormal. My MD/homeopath informed me that Lyme was still unlikely as this test has a high false-positive rate, but ordered the Western Blot typically used as a follow up. This test takes a very long time to be processed in the fall as there are many people who need it, and it wasn’t until a month after the masseuse first suggested Lyme that I finally got a definitive result: my Western Blot was positive. In fact, everyone who’s looked at it has been shocked by just how “lit up” it was.
October 4, 2007 at 12:35 am (my story, tests)
Tags: feelings
Probably one of the most difficult moments of this whole experience was the morning of October 4th, when I showed up at the hospital to get a CAT scan. After all the paperwork was done and I arrived at the lab, I sat down for the nurse to prep me, and she asked me if I was nursing or pregnant. I said that I was nursing, and she explained that I would have to stop nursing for the next 48 hours because they were going to inject me with a contrast that would make my breast milk dangerous for my daughter.
I lost it. I was totally unprepared for this news, I had not prepared my daughter, I still felt guilt over having weaned my first child suddenly and had sworn I would not do the same to my second, my husband was out of town, and I had no clue what to do. Luckily, I reached my best friend on the phone, and she walked me out of my emotional response and encouraged me to put my health first, which is what was sorely needed at that moment. I told the technician to prepare me, but could not stop the tears from running down my cheeks as I did so. I already knew that I would probably wean my daughter for good, as her night nursing was interfering with my sleep and I knew weaning her was one of the steps I needed to eventually take as I worked on healing myself. A doctor walked in as this was going on and asked if I was o.k. I did my best to say yes, but I’m quite certain that moment is the reason the lab called back less than 8 hours later with the results of my CAT scan: NO CANCER. What a relief, for me, and especially for my husband, who deeply feared that we would get bad news.
I returned home and (after consultation with at least one more friend) told my daughter that just like mommy’s arm was not working last week, this week her breasts weren’t working, and that I could not give her milk. Her response makes me cry even now months later as I write this: truly the worst part of weaning her was sitting in the hospital imagining how she would react. She handled the situation with a grace that I still strive for when faced with unexpected and unhappy events. Unfortunately, at the same moment, she took on a burden bigger than a 2 year old should have to bear, and it began to visibly wear on her as the week progressed. Finally 10 days later, my husband and I decided to allow her to return to nursing.
This return to nursing was decided on after a tearful morning talking to a wonderful La Leche League leader who supported me in my choice to wean, but also encouraged me to consider options I hadn’t seen. In particular, she told me that I could choose to feed at times and frequencies that made sense to me, rather than those preferred by my daughter. I chose to allow nursing only once per day to minimize the physical requirements: the time of day I treasured most, right when I come home from work. No night time nursing, and no frequent nursing. Also, should I have to wean again if my diagnosis required it, only one feeding would need to be eliminated. Athough a little bit of a bumpy transition, the return to nursing was exactly what both I and my daughter needed.
September 24, 2007 at 12:35 am (my story, tests)
Shortly before the 9/25 doctors visit described in my next post, I received a phone call from my husband (who was in Australia at the time). He told me that we needed to insist that my doctor start conducting tests and eliminate possible causes of my symptoms, starting with lymphoma.
Now, I had actually mentioned my concern over that possibility to my MD/homeopath before, and she had assured me that something abnormal would have shown up on my X-rays in December. However, my husband was insistent, and I was still worried myself. Also, we did not just want to test for cancer, but rather start eliminating every possible cause of this illness until we could track it to its source. My husband in particular believed that I really was ill, and not just fatigued by a difficult lifestyle.
While I myself sometimes had doubts if I was just making a big deal over getting too little sleep, I had trouble believing that the sort of pain and frozen muscles I had experienced over the previous month could have been caused simply by an unhealthy lifestyle. Also, I knew that I ate well, exercised, and got way more sleep than my husband. I was beginning to believe that, as a colleague had told me, I needed to figure this out for myself. In fact, by the time my husband called I had already begun to take steps to improve my lot by sleeping more and getting a massage. His belief that my experience warranted concern and investigation helped push me over the edge to actually advocate for myself in a way I had not until now. I am so grateful for his insistence on action. As a result of that phone call I:
1) Asked my MD/homeopath for more tests (on 10/25). She ordered a repeat of my blood work with some additions, a CAT scan of my lymph nodes, and another X-ray.
2) Began interviewing massage therapists in earnest, trying to find one who would massage my lymph nodes to help drain them (a big mistake!). This ultimately led to my diagnosis.
3) Arranged to take a week off work in order to determine if more rest would help me, take a break from the stress of having way more to do than time to do it in, and do some research to try to figure out what was wrong with me.
