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October 1, 2004
The Second Great Imitator
One of the many reasons that Lyme disease is so hard to diagnose is that it disguises itself. I have recently seen a list of over 300 illnesses that Lyme can be mistaken for. It took 7 years for my diagnosis. During that time, I was diagnosed with Idiopathic Allergy to Hormonal Dysfunction to Adrenal Exhaustion to Mercury Poisoning to Chronic Fatigue Syndrome (and a few in between that I have forgotten). I even had an examination with a Lyme literate naturopathic doctor who concluded that I did not have Lyme. I never saw a tick, never saw a tick bite, never had a bull's eye rash.
The First Great Imitator was Syphilis. It also disguised itself as a myriad of different diseases. Both Syphilis and Lyme are spirochetes and look very much alike under the microscope. This is the term for the type of bacterium. It's a long skinny worm shape with pointed ends that can move easily through tissue with a spiral spring-like motion. It can even change its shape when needed. It can shed its cell wall and enter a cell, where it can remain undetected because the body's own cells provide it with a perfect place to hide. It can hide in muscle, organ, joints, brain. No cell is safe from its intrusion. When it leaves a dying cell to look for new territory, it takes a piece of the cell's membrane and travels covered in a cloak of the body's own cell wall material - undetectable and unchallenged by the body's immune system.
I don't suggest that the Lyme bacterium has a brain, intellect and free will, but I do hail the mysteries of evolution that could produce such a perfect storm.
Posted by Laureen at 1:05 PM
October 2, 2004
"Well it looks like you have Lyme, after all"
I've been on the internet quite a bit since I got sick seven years ago. It's a good place to do research - especially of you can't leave home. I have a good understanding of many illnesses that I thought I had. I've thought I had Chronic Fatigue Syndrome for over 3 years. I've kept notes in a war torn journal. Very few complete sentences - short phrases, notes, stars, arrows, medications, ideas, lists, lab results, questions, doctor?s visits and orders.
It has been 4 months, May 20, 2004, since my doctor said, "Well it looks like you have Lyme after all." I don't remember why, but my doctor just got a bug (pun intended) to do a Western Blot test. It came back "very positive". My jaw dropped and I just stared at him. I couldn't take it in for a moment or two. I had to brace myself and leaned on the examining table. Because of this little bug and its bazillion friends taking up residence in my cells I have lost my previously normal life. I have lost my job, my paycheck, my health insurance, my health, my ability to leave the house for more than a few hours, my ability to play with my wonderful tornado of a 3-year-old grandson, my ability to go to a concert or the beach with my husband.
Posted by Laureen at 1:14 PM
October 5, 2004
The Starting Gun
Some Lyme disease comes on fast and hard. Some comes on slowly. I theorize it depends on which strain of borreliosis it is - what its life cycle is. Some have a long life cycle some a short one. Everybody reacts differently possibly based on which systems are the most vulnerable.
My illness came on slowly - over a period of several years. I had my first symptom in April of 1997. It was an itchy spot which grew into a rashy patch when I scratched it. It slowly became worse and spread over most of my body. The allergist controlled it with prednisone - which coincidentally depleted my bones. Then he told me he didn't know what else to do for me and sent me back to my own useless primary doctor.
I tried acupuncture to no avail. I switched doctors - tried one who was a "nutritionist" and relied on natural treatments when possible. I continued to have increasing problems - hormone dysfunction, then adrenal insufficiency. Problems seemed to just come out of nowhere. I had always been a healthy strong individual. This was just unbelievable. How could my body all of a sudden after all these years suddenly fail me this way?
Posted by Laureen at 11:38 AM
October 6, 2004
Crash!!
I first became incapacitated in January of 2000. I began to "crash" for several days at a time. I would just lie in bed on my side, unable to dredge up enough energy to turn over, let alone get out of bed. I hadn't the energy to read or listen to the radio or TV or even think. I would just lie on my side in the quiet. When I did make it to work, I would end each day in absolute desperation to get home to rest.
In January, I had one 4-day crash. In February again one crash, in March two. More in April and May. On May 15th, I took a month sick leave. I thought all I needed was a break from my stressful job and hateful new boss. In June I went back to work. I worked for two days and crashed again. I assumed it was my job that was making me sick and quit.
Crashes continued to come regularly and often. They all had the same sequence:
1) Severe pounding, splitting headaches woke me up anytime from 3 to 7 am. Disappeared when upright, returned when laying down, relieved by excedrine extra strength. The pounding of the headaches was located in the back of my skull.
2) Insatiable hunger - no appetite, constant stomach gas. We discovered that I could drink soy milk by the quart in one sitting. The liquid soothed my stomach and relieved my hunger and even though I was hungry, I just couldn't eat much.
3) Complete exhaustion and weakness, anxiety, dizziness and disorientation on standing
4) Heart pounding as though I had run a marathon, body throbbing as though it were trying to get oxygen.
5) Sound and noise sensitive - I had to have complete silence
January 2001 - My husband came rushing into the house one day. "Turn on the radio!� There's a guy on who sounds just like you! He was Keith Jarrett, a musician who had Chronic Fatigue Syndrome. I listened to the interview over and over again on the internet. He was me. That's it - it's Chronic Fatigue Syndrome. At last - but can it be cured? And is it the cause of all this misery? And will I be all better once I get rid of it? Back to the internet!
Posted by Laureen at 1:32 PM
October 16, 2004
The Lyme Guy
February 2002 - On my next visit to my doctor, I asked her, "Do you think I have Chronic Fatigue Syndrome?" She said "No, and if I thought you did have it, I'd treat you the same way, anyhow." It was at that moment I thought that maybe I should seek out another opinion. I was convinced from all I had read on the internet that I had CFIDS (Chronic Fatigue and Immune Deficiency Syndrome.) Actually, I found a doctor on the internet - I found a CFIDS Support group that had a listing of local professionals - doctors, lawyers - who were sympathetic to CFIDS sufferers. Some doctors still didn't believe CFS or CFIDS were real and treated these patients like "It's all in your head." So luckily, I found a doctor without this prejudice and my husband drove me there (an hour drive) while I laid in the back seat.
Dr. G. greeted me in the waiting room. He escorted me to his treatment room - a comfy Feng Shui�ed room with a sofa and a massage table with a pink sheet for an exam table. My husband was made to feel welcome and sat next to me. For the next hour and a half, he listened to my history, wrote notes and asked for occasional clarification.
Then he gave me a short physical exam. "Not only do you have CFS, but you have Fibromyalgia, too."
Posted by Laureen at 4:04 PM | Comments (3)
October 20, 2004
My Own Personal Great Imitator
This is a special installment - for my daughter, Sara, who asked these questions, along with my responses.
"Can Lyme tests be negative? How is that possible?" Lab tests for Lyme are notoriously incorrect. Lyme has a number of ways to avoid being attacked by the body's immune system - for one example, it has a slime coat on its cell wall which protects it from being identified as a foreign protein and without this recognition by the immune system, the lab test has no antibodies to identify.
"Why didn't you just stop there?" Actually, we did stop there. We accepted this "No Lyme" clinical diagnosis for 2 more years. Most Lyme is misdiagnosed as one or more of over 300 diseases that it can mimic.
"What made you test again?" My doctor decided to test again because I was following a peculiar pattern. He described it as, "You're just so atypical for everything we've tried. And you are so cyclical - you feel ok for a while and you feel lousy for a while and it cycles back and forth. Nothing seemed to make you feel better for long. It just felt it had to be Lyme."
We used a test called the "Western Blot". He cautioned, "You can sometimes get a false result, but let's try." The result came back "very positive." I have since read an evaluation of this test, which said that false positives are extremely rare.
Posted by Laureen at 1:17 PM
October 23, 2004
A Strong Constitution
Actually - most lab tests return with negative results! Lyme has a multitude of ways to hide from the body's natural immune system and ways to hide even from antibiotics.
It is a disease that is "clinically diagnosed". Meaning that it is described by symptoms - joint pain, severe neurological disturbances, chronic fatigue, fibromyalgia, and a long, long list of other problems. I was clinically diagnosed as not having Lyme because - my interpretation - I just didn't have enough symptoms! (There's that "atypical" Laureen again.) And the reason - again, my interpretation - is that I have a strong constitution! That's right - genetically, I am strong enough to be able to fight many of the borrelia's attacks. It just seems that some people are genetically stronger in the face of this disease. I am so grateful that I am not so much worse.
There are people who are so miserably sick. I have recently exchanged emails with a woman who is taking care of her 26 year old daughter who has had Lyme for 14 years and has been bedridden for 7 years. I believe I should count my blessings.
Posted by Laureen at 4:29 PM
