I am new to these forums and wanted to share my treatment protocol and possibly get some feedback from others with similar experiences. I'll try and keep this as concise as possible. Please keep in mind that before diagnosis I was in my 20's, in peak physical and mental health, and had no history of any ailments or conditions.
(Early 2010) I was first diagnosed with Lyme (no co-infections) in early 2010 by accident. No tick was ever found, I had no glaring symptoms, no rash, etc. and was going through my life completely normally. I made an appointment with a new Dr. and they ran a panel of blood work and tests as protocol for new patients. The labs came back positive for Lyme and I did not think much of it. I was put on a high dose of Doxycycline for a month and went on with my life.
(2011-2012) Within the next year or two I started slowly noticing all of these gradually intensifying symptoms that I couldn't explain. The light bulb eventually went off that these symptoms matched up to classic untreated Lyme disease, and, granted that I had tested positive for it in 2010, I sought out additional treatment.
(2013) I had relocated, so I wasn't able to go back to the Dr. that had initially diagnosed me. I expressed my concern to my primary Dr. and he ordered a lab test for Lyme, which came back negative. Unconvinced, I had another Dr. run a Lyme test, which also came back negative. He prescribed a month's worth of Doxycycline as a precaution, which seemed to have no effect on my symptoms. I then sought out the help of an infectious disease specialist, who then ran a third lab test for Lyme. This also came back negative. At this point I was so frustrated that I just gave up and powered through life as best I could.
(2014) Over the course of 2014 my symptoms continued to worsen to the point that I was barely able to function normally. I could barely think straight, was having severe neurological issues, as was beginning to have trouble with movement and walking. Towards the end of 2014 I was completely fed up and sought out the help of a "Lyme-Literate" Physician. Sure enough, they ran lab work through IGENEX and the results came back positive for Lyme (no co-infections). I was placed on a treatment protocol of Doxycycline for about
3 months. My symptoms gradually started to improve over this time period, but, after an oversight left me without medication for two weeks or so, I started to plateau and was no longer improving from the treatment. At this point, the Dr. wanted to start testing for other things besides Lyme to explain why I wasn't getting any better. Frustrated and uninterested in pursuing a different diagnosis, I ended treatment.
(2015-2016) Throughout 2015 and most of 2016 I attempted to push forward with life now that I was feeling marginally better from the previous treatment (I assumed that the infection had cleared and I simply needed to let my body and mind heal). There were still some intermittent neurological symptoms present, and I was always tired, but I was able to function (barely).
(2017) In the beginning of 2017, frustrated with being unable to function at the level that I previously had before the Lyme, I sought out the treatment of another "Lyme Literate" Physician. They ran lab work through IGENEX and, sure enough, it came back positive for Lyme (no co-infections). This Dr., through reviewing my previous medical records and lab work, was able to determine that the current infection was the same as the one from 2010. It had persisted through all of the prior antibiotic treatments and was still an active infection. I was put on 500mg of oral Cefuroxime x2 daily and immediately noticed a dramatic improvement in all of my symptoms (there were ups and downs from the Herx reactions, but, in the end, I felt much better.) After two and a half months of treatment with Cefuroxime, I am feeling dramatically better and my lab work has come back negative for Lyme, indicating that the infection has now cleared. It has been a month since I have taken an antibiotic, and my symptoms still seem to be gradually improving, which is a great sign.
I realize that this is a long post, but I felt it necessary to include the above details of my treatment process to put everything in proper perspective. Time will tell if this will be the last leg of my Lyme treatment journey, but it seems to be looking that way.
I am curious as to why I do not hear about
more Dr.'s prescribing Cefuroxime for Lyme Disease. Doxycycline, even when prescribed in high doses to cross the blood-brain barrier, was unable to clear the infection even after months of treatment. Cefuroxime, in my case, cleared a years-long infection with neurological symptoms in a matter of months without the need for IV antibiotics.
I thought that this was worth sharing for those still struggling with this illness and wanted to
open up a discussion.
Post Edited (Intuition) : 5/10/2017 6:55:06 AM (GMT-6)