Posted 7/28/2015 3:29 AM (GMT 0)
A forum member sent me a message asking me about this topic, so I responded and also thought it would be worth posting on the forum -
When I was sick with lyme, it went in cycles. It started with flu like symptoms, then I had bladder issues, then I had joint pain, migrating pains, then twitching, nausea, sweats, etc, etc,..... but when lyme hit my nervous system, that is when I went into full blown panic. But this is also when a red flag went up and my family members suggested that I consider lyme disease as the culprit to my problems.
I remember to this day when I was walking in the mall with my kids and all of a sudden I started getting a tingling feeling down the left side of my body. From my shoulder to my hand and my hip to my foot. As I walked thru the mall, it got worse. My little toes began to get numb. When I got home I was extremely weak and had a fever. Lyme had begun to attack my nervous system - and I still didn't know it at the time. As the week progressed, if I was on the phone for too long, my left arm from my hand to my elbow would become completely numb. I went to the ER a week or so later, because I woke up in so much pain from shoveling the driveway. It was surely nerve pain. At this point I was suspecting lyme, and I was having nightmares of not being able to walk, this was because my legs were beginning to feel numb from the inside. It is so hard to explain, but this is the best way to describe it. I couldn't walk straight anymore because they were so weak. Also, as I am typing this now, by this point, my arms would have "given out". I was not able to type or write for very long until they sort of just stopped working. At this point I knew I had lyme, but still hadn't seen my LLMD yet. I remember filling out the forms the night before my first appointment and I barely was able to finish them because I couldn't write anymore. This folks, was the scariest, scariest thing that every happened to me. When I slept at night, I would wake up every hour, because whichever arm I rested my head on, would become totally numb. It was God aweful. I remember asking my LLMD at my first visit to reassure me that these symptoms were only temporary, she did so, and she was right on, thank God! This was the extent of my lyme disease peripheral neuropathy symptoms. I was lucky in that i was able to differentiate the actual disease symptoms from most of the side effects or toxicity issues I experienced from the medications.
I began treating lyme with doxycycline. I started at 100mg twice a day (in February), then increased to 100mg three times a day, then increased to 200mg twice a day. After I reached that dose, my Dr added zithromax 250mg twice a day. I was also on many herbs and nutritional supplements. Zithromax was added in April. But once May came around, I had to stop the doxy. This was because of toxicity issues and side effects combined. I couldn't handle it because of the chemical reaction between the sun and doxycyline, which causes severe burning of the skin. Sunblock does not help this problem, because it is a chemical reaction. So I wore a sunhat, wore light long sleeved clothing, etc, but my hands were beginning to get really messed up. They were getting burned even while I was driving the car!! I would say this went on for about 2 weeks, and then the peripheral neuropathy issue set in. After being outside, even if it was for only a half hour, I would go inside and wash my hands. When I washed my hands, the strangest feeling would occur - after drying them, my hands would get extremely cold, and it literally felt like there was running water under my skin. It would travel from my hands up my arms. I was frightened and was worried that it was a new symptom. But then I experimented, and every time I went outside and came in again, it would happen. So I put two and two together and figured it was the medicine. My Dr stopped the doxy immediately and switched me to Bactrim. In two weeks or so, the running cold water under my skin stopped. I can't remember if it was happening else where in my body - I believe it was, but I can't be sure. I would have to check my notes!!!
Looking back, it took about a month for my legs to get better, 3-4 months for my arms to get better, and the numbness/tingling in my toes and left side took at least 6 months.
So, this basically sums it up. I explained everything with hope that maybe it will give you some ideas as to whether your symptoms are due to the disease or the medication. I hope it helped you gain a bit of insight!!!