Hello? Is anyone still out there? I wouldn’t blame you if you weren’t - as a blogger I really suck. But I mean well :) Every time I let my blog lapse I feel so rusty on how to start, what to say, how much to tell - you know. Gotta crack the knuckles and just dig in I guess.

Work has been extremely busy. I got myself in a bad situation and took on too much for me to handle and it ended up exploding in my face. I have a really bad habit of doing that - taking on too much - but I can usually shuffle, juggle and smile just enough to get through it before anyone notices how half assed things have gotten and get out just in time to clean it all up.

Not this time - so now I’m on probation :( It’s my own fault though. I have this bad habit of believing I am on my own and no one has the time or desire to help me so I try to tough it out alone. I should have reached out for help and I didn’t. It’s hard though, as that is just not in my nature. I don’t believe in other people to come through for me when I need them. I learned a long time ago that I’m the only one I can count on.

My health has been shitty - mentally and physically - but I am learning that they both may share the same cause. It appears that I may in fact have chronic, late stage or disseminated Lyme Disease. My Dad sent me an article from his hometown newspaper about “Living with Lyme Disease”. I sat down and read it right away and said over and over “OMG, that’s me. That’s how I feel. I’m not crazy.”

There was a link published to a VT based support group for people with Lyme and I went and joined the email group and met some amazing people. This is not a “poor me” kind of support group - this is one full of help, encouragement, information and action. In talking with the people in the group - mostly people diagnosed with Chronic Lyme - the general consensus is that I have Chronic Lyme and need treatment. They gave me names of LLMD’s (Lyme Literate Medical Doctors) in the area and I am in the process of getting my records transferred and getting an appointment. It sure would be nice to get some relief.

For those of you unaware of my history here’s a copy of the introduction letter I sent when I joined the online group of Lymies -

I was diagnosed with Lyme Disease 2 years ago after going to the doctor with the flu and a large (6-7 inches in diameter) bulls-eye rash on my shoulder blade. No one in the practice had ever seen a case of Lyme before but my doctor thought my shoulder looked like a picture he had seen in a medical textbook. He confirmed this by pulling his textbook and telling me that we had to diagnose it clinically as the antibodies wouldn’t show up in my bloodstream for 30 days. He put me on a 2 week course of Doxycyclene and scheduled me to come back at the end of the meds. After 2 weeks the flu symptoms – fever, chills, night sweats, horrible headaches and body aches – were mostly gone and the rash was down to a dark red spot about 1 inch in diameter. He made the call to stop antibiotics as he felt given what he was reading in his textbook we had caught it early and I was okay. I did have blood tests done 30 days after diagnosis and both the preliminary test and the Western Blot came back positive.

For the next year I did pretty well except for chronic aches in my knees and ankles. I changed my eating and exercise habits for the better and lost weight to try to help eliminate the strain on those joints. I felt better overall but did not get relief for my knees and ankles. Some days they ache so much it’s tough to go up and down stairs, some days they feel like they are swollen 10 times their normal size although they look normal on the outside. This has never changed.

But last summer things started feeling – strange. Headaches, muscle spasms, aches had spread to hips, shoulders and even elbows. Heart palpitations – sometimes it felt like my heart would pound right out of my chest, elevated blood pressure, swollen lymph nodes and petechial spots, burning sensations on my forearms and shins. My energy level changed. I couldn’t stay awake as late anymore and I couldn’t get up in the morning. Even after 8 hours of sleep I was still dead tired and all of my limbs felt like lead.

I went back to the doctor and he seemed stumped and said he would run blood tests. I asked if it could be Lyme he said he would have them screen for it as part of the tests and if it came back positive then he would refer me to an infectious disease specialist in Burlington. My blood pressure was so high when I was there that he actually put me on the machine to see if I was having a heart attack but my heart rhythms were all normal.

All of my blood tests came back negative/normal. All blood counts were normal, thyroid levels were normal, negative for Lyme, leukemia ruled out, so he patted me on my head, told me I was under too much stress and that I needed to slow down to feel better. I am busy and I do have a lot of stress in my life, 4 kids under the age of 10 and I work full time from home, but I knew that wasn’t it and I left defeated.

Everyone in my life told me I was working too hard and getting older, I’m 34 not that old in my book, and that I needed to accept that my body couldn’t do what it used to. Nobody understood and I gave up.

Now a year later, I’m still run down, my joints ache and feel swollen/inflamed pretty regularly, I have more petechial “dots” and have been struggling with something I didn’t attribute to Lyme (potentially) until recently. My memory and my brain just do not perform as they used to. The memory decline is significant and scary – and I have used the term “brain fog” more often than I care to mention. My brain so often feels like it’s swirling, things don’t make sense like they used to, I feel myself having such a hard time concentrating and feeling focused. But again I’ve been told that I’m getting older and have a great deal of responsibility – slow down, don’t take on so much etc.

And that’s where I’m at now, in a holding pattern until I can get in to see the doctor but hopeful to get some answers. After the “experts” at VTLyme read my letter I received many emails back saying they felt indeed that I did not receive adequate treatment and am now suffering the repercussions.

So the out of control cognitive decline has biological roots in that this lovely little spirochete bacteria can cause lesions on the brain that affect memory centers and mood control as well as general cognitive function. In some ways it’s like I’m having Alzheimer’s-like symptoms with the short term memory problems and the increasing confusion as to what I’m doing, where I’m going etc. As someone that has always placed great value on their own brain power this has been particularly frustrating. But I’m hopeful. Hopeful that I can receive treatment and get my life back under control. Hopeful that I can feel more like the person I used to be before that nasty little tick bit me and changed my life.

Living With Lyme

Diagnostic Hints And Treatment Guidelines
For Lyme And Other Tick Borne Illnesses

Late and Chronic Lyme Disease