Oct 09, 2009
Just thought I'd write this entry to inform all that view it that Lyme disease is in Utah. I have Lyme disease. Educate yourselves. View the movie "Under Our Skin." Many older physicians are uneducated when it comes to Lyme disease and that includes infectious disease doctors. The younger up and coming physicians are a bit more aware of the controversy as well as Lyme disease issues. If you think you have Lyme, I recommend ILADS.org and Lymedisease.org and read up on the information, then find yourself an LLMD.
There are so many symptoms and I am all too tired to write them so I will give you my major ones but symptoms can vary among people because when it gets into your central nervous system and/or brain just think about what functions they control in your body. So wherever the bacteria happens to attack in your CNS or brain, that's the symptom or symptoms you will get. Lyme is often misdiagnosed as Fibromyalgia, Multiple Sclerosis, Lupus, Parkinson's disease and ALS, (Lou Gehrig's disease). In one study by Alan MacDonald, MD Pathologist, he looked at 10 Alzheimer brain DNA that he received from the Harvard Brain Bank and found the Lyme bacteria in 7 of those 10 brains. His studies can be viewed at the National Institutes of Health as well as other reputable institutions and journals.
Erythromelalgia - Erythro means red and algia means pain. This was the first symptom I had after the onset of a "mono-like" illness. When it is acting up they swell, get red and hot, sometimes not painfully and other times they burn. This mono-like illness, interestingly enough, produced a high neutrophil count on the CBCs that were out of whack. That is something I point out because anyone who knows what mono does to a CBC count would know that mono actually would make your lymphocyte count go up and a high neutrophil count generally indicates a bacterial infection. Mono is a virus!!!!
I also had very high viral titers, HHV6, Parovirus, CMV and EBV. When your immune system is weakened with the Lyme, any previous viruses can be reactivated in your body. Everyone has dormant viruses in their body. They are usually kept under control, but a weakened immune system brings them all back....fun stuff.
Arthritis - This migrates, and will show up places where you never had pain in your life. My hips are one example. One day I just woke up and my hips felt frozen. I had to shuffle like you would imagine a 90-year-old walking. Now it is severe in my knees and the hips are not bad. My hands and feet almost always hurt in sync.
Myalgia - This was so significant that I (a former gymnast) could not walk up one flight of stairs without my legs literally shaking beneath me. It has moved from my thighs to my calves but it's still present in the thighs. The severity is just worst now in my calves. There was also a time that I could not hold a blow dryer because my left arm was so weak.
Brain Fog - This was much worse at onset and it was serious. It was like I could not clear my mind or my vision would not align. It's hard to explain. Think of that feeling you have on the day you woke up the most tired in your life except that unlike normal people, that stays with you all day instead of the five to ten minutes it takes you to wake up. Now I have memory problems. I can't remember constantly why I went into a certain room. I can't remember neighbor's first names (for some reason last names are not so difficult). I have slower word recall.
Chest Pain - I was told this was GERD yet the medicine never took care of it fully. I thought I was having a heart attack one evening and had to go to the ER. This has only occurred once in the last 6 months but the year before that there were at least four episodes.
No Appetite - I have no desire to eat whatsoever and only do so because I know I have to. I completely lost all craving for food. I sometimes forget that I haven't eaten because there literally is no desire there. If it's flaring up badly, you could put a feast in front of me and it wouldn't tempt me at all. This is actually one of the things I miss the most about being well. I miss the taste and pleasure of enjoying food. Food now is just life support for me.
Things started smelling bad, though I was the only family member who thought it smelled bad. It's a neurological symptom.
Ringing in My Ears - My ears ring almost daily from this. At times I get an extremely loud pulse sound which isn't my heart I guess but the blood pulsing through my veins. It was so loud I was not able to sleep. I get high pitched sounds and low hum-type sounds and the sound like a little miner just tapping away in my ear.
Extremely Tender Muscles - I started physical therapy some months back because at that point I still had no diagnosis and I thought maybe that would help me get my strength back. I highly recommend this for all Lymies. The PT gave me a stick to use to roll over those muscles and I do it because it helps flatten them so they feel better for a time, but when I roll it feels as though I am rolling over dark, fresh bruises. It's very painful, but I do it because I know afterward it will keep my muscles from contracting for a few hours at least.
You can read some of my earlier posts as I was trying to find out what was wrong with me. I was grasping at straws. Hope this helps someone else. Lyme disease is the 5th most common disease in American and the No.1 vector-borne disease in America, and YES I TESTED CDC POSITIVE! And NO, I will not get treatment from any doctor who follows the IDSA guidelines as they are flawed to the umpteenth degree. Lyme tests are flawed and generally produce false negatives much more often than false positives so do not think just because you are negative that you do not have Lyme. This is a misconception put out by the IDSA which settled an antitrust investigation with the Connecticut Attorney General, then violated a settlement agreement after a new IDSA panel was chosen in July of 2009 and to this day (2013) still bury their heads in the sand. Senator Blumenthal of Connecticut has been very helpful to the Lyme community as well as other politicians.
Lyme is a horrible disease. It took me from a very happy-go-lucky, physically active person to someone who now has learned to live with limitations. The tide has definitely changed in favor of Lyme patients since 2008, but we are still fighting for better diagnosis and treatment. My children will have better doctors when they are my age because at that point nearly every doctor will have known an individual with Lyme and the IDSA won't be able to continue to deny evidence. Sounds conspiracy theory, I know. I'm a former court reporter and I have always believed that evidence is the best way to prove a point. I've done my research and the evidence is in favor of Lyme patients, not the IDSA.