Refuse to sink - My journey battling Lyme disease

This has become my mantra. Less than a month ago I wrote the post titled " Progress ". In it, I talked about how I was having two good weeks, and I said, "I feel I may be turning a corner, but I'm scared to get my hopes up. Lyme has a way of doing that to you - knocking you down when you have just gotten your feet under you." My fear proved to be warranted, since soon after I started feeling terrible again. Bad days are terrible, but bad weeks are even worse, because they really wear down your mental state. My joints and hands have been hurting again, although the joints have been worse before. Some days I am alternating between having hot flashes and cold flashes. I have this overall unwell feeling - like when you're sick, and you know you are, but you can't pinpoint exactly "why" you feel that way. My neuro symptoms have been kicking up, which is discouraging since they had previously been getting better. I alternate between being anxio...

One of the most often expressed problems amongst Lyme sufferers is loneliness. And it makes sense. Most of us have been turned away from the doctors we trusted. Friends and family write you off, claim you're making it all up. Spouses become fed up and leave. I count myself blessed to have a husband who has been supportive. But there was a time, when I hadn't yet received a diagnosis, that he had asked me if I thought maybe I was a hypochondriac. And you know, I couldn't blame him. After being sick for 3 years, I cannot count how many times I questioned my own sanity. When doctors tell you that you "just have anxiety," you begin to doubt and second-guess yourself. It's only natural.  Having a chronic illness, especially one as controversial as Lyme, doesn't warrant casseroles. No one comes to your house to watch your kids so you can have a break. There are no cards, no money raising, no phone calls. You just don't get the support others ...

Saturday I had the opportunity to attend the Central Mass Lyme Conference. I'm grateful that it happened to be so local to me (45 minutes away) and was so inexpensive ($10). For each hour, there were several speakers, so unfortunately I wasn't able to see everyone I would have liked to see, but I still learned a lot. I also got to spend the day with a new friend I met, who is also battling Lyme and happens to live on the same road as me. Small world! I was able to see Lori Dennis, author of Lyme Madness , discuss the politics of Lyme and her passion that has come from helping her son battle Lyme for the last five years. During the Q & A at the end, I quickly came to realize I was in a room full of people just as angry as I was. Most of them had Lyme themselves, or loved someone suffering from it. It honestly felt encouraging to be in the same room as even just a few of the thousands of people fighting against this. With an illness as lonely and isolating as Lyme can be...

A funny thing happened the other day. I was standing in my kitchen, and I suddenly said to myself, "wow...I feel good." It sounds insignificant but it is quite the contrary. Anyone dealing with Lyme will tell you that "feeling good" is something they will do anything to achieve. For the last 3 weeks, I've been able to go to my Pound class without incident, and I have more energy. My bout of insomnia that began stopped abruptly. I had one bad night of sleep and since then, have been sleeping okay. My joint pain hasn't been occurring daily, thankfully. The eye twitching has lessened. I've definitely had some off days but the good has outnumbered them lately. I feel I may be turning a corner, but I'm scared to get my hopes up. Lyme has a way of doing that to you - knocking you down when you have just gotten your feet under you. It's not abnormal for me to have a few good weeks, so I'm not banking on it, but either way, I'm thankful for any i...

I have been in treatment for 12 weeks: 12 weeks with Ceftin 10 weeks with Rifampin 6 weeks with Tinidazole   5 weeks with A-bab I also began Samsara Herbs Lyme mix a few days ago. Symptoms that have improved: Air hunger, due to Babesia, is still present (on and off) but isn't nearly as severe as it used to be. It's only a minor annoyance now. I have upped my A-bab dosage to 20 drops twice a day.  Joint pain (yay!) It has let up for the last two weeks. Could be just a temporary reprieve, but I'll take it.  Fatigue. I've been able to wake up and get going with my day and have more energy. Insomnia. I get cyclic insomnia, and I thought it was beginning again (usually comes for a week at a time) but I only had one night of bad sleep and then went back to sleeping fine.  Pins & needles continues to happen less. Twitching, which has been driving me nuts for months, is finally letting up. It still happens, but usually just in the evening when I'm tired, and...

Yesterday I introduced another player to my treatment protocol, Samsara Herbs Lyme formula. It has several herbs used in herbal protocols (such as Buhner) plus Stevia. I'm starting slow with 1/8 tsp mixed in water. The taste isn't as bad as people had me thinking. Compared to A-bab, it's practically a treat.  The week has been up & down. I would say, I mostly felt okay. I'm still having a reprieve of my joint pain except for a bit here and there. Last night started another round of insomnia. It comes in cycles; I'll have insomnia for a week (mostly just can't fall asleep, but I'm tired and exhausted) and then I'll get a few weeks of sleeping like a dead person. I've tried melatonin, it makes me even more tired, but it's like there's a switch that won't allow me to actually fall asleep. I've learned to just deal with it, because I know eventually the cycle will end and I'll be back to sleeping again.  My throat iss...