Happy New Year!
I apologise, once again, for the delay in writing this post. I do intend to write more often, but a lack of 'spoons' so often means that it just doesn't happen!
Well, the process of trying to ascertain whether or not I have Chronic Lyme Disease continues. I hoped to have an answer by now, but alas, I do not. However, I am another step or two along in the process. I admit, I am finding it rather frustrating and at times wish desperately that I knew for certain what, and everything that, is making me sick (and how to treat it!). However, I am trying to be a patient patient, and to remember that a few months is not a long time in the big picture of things.
Last time I wrote about my journey on the path of investigating the possibility of a Lyme diagnosis, I had been prescribed Plaquenil and Azithromycin after receiving inconclusive blood test results, as a diagnostic tool. I wrote:
"So far I have taken 3 doses of Plaquenil. Each time, I have felt nauseated in the afternoon and evening after having taken the drug in the morning, and have not had this nausea on the in-between days. However, as nausea is not a new symptom to me, I can't say at this point whether this might actually just be a coincidence. Nausea is also listed as a possible side effect of Plaquenil. I seems to me that it is likely that if I am to experience 'herxing' this is less likely to occur before I start on the Azithromycin"
It turns out that I was wrong. After 5 or 6 doses, the nausea got worse, and paired with indescribable fatigue, it hit me very hard. I felt extremely unwell for a few days, to the point of barely being able to even do basic things like feed myself, then thank fully it started to ease. After another couple of weeks I started to feel like I was back to my normal. The way that the symptoms increased over a few days and then eventually got better again, means that it is unlikely a reaction to the medication, as in an allergy, but instead, a symptom of the medication actually working. This was a little bit of evidence in the 'for' column for Lyme Disease, but is not enough for a diagnosis yet.
The next medication to be introduced was Azithromycin, starting at at a very small dose. At first, I thought that I was not reacting to this drug, physically everything seemed within the realm of my what is normal for me (I was in a lot of pain, more than usual, but I felt that could probably be attributed to over exerting myself). However, gradually over a few days I found myself getting more and more anxious and depressed. After about a week I found myself in a terribly depressed state, crying hard and uncontrollably for several hours on end and feeling like something was very wrong with me. This did improve after a couple of days, but I was still left feeling emotionally 'flat', and mildly to moderately depressed most of the time. After about three weeks, I visited my doctor again and was taken off this medication. Within a few days I started to feel like myself again.
When I was taken off Azithromycin, I was put on to another medication, Trimethoprim. This was primarily to give an indication as to whether I might have the co-infection Bartonella. Usually, if someone is going to herx on this medication it happens quite quickly and severely. However, after a couple of weeks on Trimethoprim, I noticed very little difference in my symptoms. Therefore, my doctor has concluded that I likely do not have Bartonella. He does suspect, though, that I may have another co-infection, Babesia, for which I show more associated symptoms.
After stopping the Trimethoprim, I went back on to the Azithromycin. Unfortunately, within a few days the feeling of depression returned and started to increase in intensity again. I informed my doctor who advised that I stop taking it. I have continued to take Plaquenil at one tablet, 5x/week without any trouble.
My last appointment was in December. My doctor wrote me a prescription for Myomycin, in the hope that I could take this drug in place of Azithromycin, without the horrible emotional side effects. So far, so good with this medication! I took it once a day 3x/week for the first couple of weeks, and having had no noticeable herxing or allergic reaction, I have now increased to one tablet 5x/week.
In the new year I will be switching to another doctor in the clinic, as the doctor I have been seeing is decreasing his patient load. I hope to get an appointment to see her in February and look forward to the fresh perspective of a different doctor. I hope that she can help make sense of my Lyme Disease diagnosis puzzle! 2014 is looking to be a big year for me. I am hoping that I am well enough come the end of the year to attend my younger sisters wedding in India! Before that, all going well, Caribbean Pink will get up and running, and I will likely be having an operation on my "dodgy" (to quote the orthopaedic surgeon) left wrist. There are still some issues to be sorted out in terms of being operated on, and going under general anaesthetic, with my health problems. I also hope, at some point, that I have some answers as to whether I will be adding Chronic Lyme Disease, and one or more co-infections, to the list of my confirmed diagnoses, alongside my connective tissue disorder, or whether perhaps, there is something else at play.
I hope that 2014 has started well for you all! I will try to keep you updated a bit more consistently in the year to come :)
