Danville Express

Cover Story - July 17, 2009

So sick from a tick

'Lyme disease could happen to you,' warns Diablo woman

by Sue Savod

It comes from a tick and it's on the East coast - isn't that what most people know about Lyme disease? And what's that got to do with us here in California? A lot. Because the fact is that Northern California is one of the most Lyme-infected areas in the U.S.A. I want to scream it from the rooftops! Be careful! We have Lyme disease right here!

In January 2008, I was exhausted and just plain felt sick. I went to my family doctor whom I'd seen maybe five or six times during the previous five years. He's a good doctor. He even asks me what I think is wrong before he checks me out. This time I didn't have a clue. He mentioned "virus" and did blood tests. I even asked to be tested for Lyme - I must have read it somewhere. There were lots of reasons for me to be run down as I had been very busy the fall before with my daughter's wedding and finishing a new house. Christmas did me in.

The tests came back - all normal, no Lyme, but an unusually high ANA, which tests protein, specifically antinuclear antibodies, in your blood. The doctor suspected an autoimmune disease, lupus to be exact, and sent me to a rheumatologist. He was also a good doctor, taught and did research, and he listened. He did some more blood, lungs, heart testing and diagnosed me with a "very rare autoimmune disease" called Mixed Connective Tissue disease. Made sense. Except I didn't have all the symptoms. In fact I only had a couple. He said I'd develop more symptoms in the next 10 years. What?! Something inside me said: "That's not what you have."

I also had had knee problems in the summer of 2006. A swollen sore knee. Doctors said it was my crooked kneecap. One wanted to remove it. Hobbled to another who said, "We have to clip the ligaments and that will do the trick." This one was a good doctor., so I had the operation. Didn't work. Had gel injected behind the kneecap along with a cortisone shot (the worst thing for Lyme). That didn't work either. Said I would need a knee replacement eventually. The swelling came and went.

Lower back ache. Went to the doctor. Recommended physical therapy. Went. Didn't work.

I came home and got on the computer. Thank God for the Internet. Lyme disease. It frequently came up when I put in my symptoms. I read more. And more. Blogs, Web sites. The light slowly went on as I saw myself described. Things I didn't even know were symptoms. Brain fog. No energy. Some joint pains. Swollen ankle. Heel pain. Sore neck. Weight gain. Ribs sore. Lower back pain. Ocular migraines (you get the sparklies without the pain). Calf leg cramps.

Did I have all that? Yes, some were infrequent symptoms I hadn't really even thought about until they were pointed out, and they had appeared slowly over time. I wasn't reading the signals. I didn't know the language of Lyme back then. I had ignored almost everything except the fatigue and the knee. In fact I push through most pain and discomfort without awareness. This new information made me finally stop and take stock.

My dear boyfriend bought me two books on Lyme and their information just about convinced me. I was sure I had Lyme. But where did I get it? When did I get it? I sent for my records from my doctor to see if I could track anything down. I never saw a tick and never had a rash that I could remember. Then I saw that in January 2003, I had gone to my doctor with a flu-like illness and a swollen knee.

Bingo! Those are classic Lyme symptoms. I had begun hiking in the Las Trampas hills right behind my home in Alamo where I lived at the time. And ticks like to cling to grasses and shrubs, so they can jump on any carbon dioxide-emitting creature that comes by. Who knows how many creatures carry Lyme. In California, Lyme is carried by the deer tick, Ixodes pacificus, the Western black legged tick that starts out the size of the period at the end of this sentence. As they mature they grow to about the size of a sesame seed. Deer, squirrels and rats and mice are carriers. They don't get Lyme symptoms. The rest of us do. Tick jumps on carrier, tick bites carrier, tick jumps off. If the carrier is a person, Lyme is transmitted. And new evidence says it only takes four hours of tick attachment for you to get Lyme. If you pull off that tick five hours later, you could have Lyme disease.

One San Francisco doctor's name kept coming up in the blogs and on some Lyme Web sites. I made an appointment and had to wait two months, until August 2008. I was nervous. Was it all in my head? I wasn't that sick. Told him what I thought and, without missing a beat, he agreed and suspected, from my descriptions, that I might have another tick-borne disease as well. I asked to be put on antibiotics right then. Sent my blood to a Lyme-sensitive lab in Palo Alto. Normal lab testing rarely catches Lyme, which is difficult to catch with a blood test anyway. One month later - yes, I had Lyme disease and Bartonella, one of the many co-infections common with Lyme. I was almost relieved. At least it had a name. I had no idea the severity of this disease. I was beginning the journey I am on now.

What they test isn't the Lyme bacteria in your blood, but the antibodies your system creates against it. As you are treated and your immune system gets stronger, you put out more antibodies. So if a test doesn't show Lyme right away, that doesn't mean you don't have it. It may just mean your immune system hasn't produced measurable antibodies. Doctors have to go on what patients describe for now. It's called clinical evidence. Eventually it shows up in the tests.

Met a lady from San Ramon the last time I went to my doctor. She had it - hers was manifested in stomach symptoms - as did her college age daughter, who had two co-infections as well. Hers was nuero-borrealis - she couldn't retain anything she was learning. San Ramon! Alamo! It's right here. In fact my doctor currently treats hundreds - that's HUNDREDS - of Lyme patents, most from here in the Bay Area.

Every parent should be aware of ticks and Lyme; 25 percent of Lyme patients are kids. If you live where deer and squirrels live, then you can get Lyme. Kids should be checked after playing outside. One author described her two sons' bouts with Lyme, both now cured. One was ill for seven years. Couldn't even go to school. They thought he had all kinds of diseases - childhood arthritis, mental problems, eye problems, flu. We need to know! If I got it, you can get it.

Centers for Disease Control says one has to have a bulls eye rash, but more than 50 percent of Lyme patients never see one. This disease is the No. 1 vector-borne disease in the U.S.; we have five times the number of Lyme sufferers as AIDS patients. Why don't we know about it? And why didn't my doctors know about it?

CDC's official line on Lyme long has been controlled by a group of doctors, Infectious Disease Society of America (IDSA). They have a narrow definition of Lyme - just rashes and joint problems - completely ignoring the brain symptoms, the stomach problems, the rest of the Lyme symptoms that masquerade as other diseases. Lyme is a very difficult disease to diagnose, but if I could diagnose myself off the Internet, then why isn't my doctor getting the information he needs? Doctors now doing research are too few and far between, and are mostly doing it without financial help. I've found that these doctors had Lyme at one time and that's how they became interested.

One M.D. was diagnosed with advanced multiple sclerosis. He read about Lyme, went to a Lyme-literate doctor and is now cured and doing research. Lyme mimics a lot of diseases - multiple sclerosis, Parkinson's, Lou Gherig's disease, fibromyalgia, chronic fatigue, lupus - my doctor said I would be surprised at the number of cases of "lupus" he has cured. There was even a test of cadaver brains from the Alzheimer's Association and seven out of 10 had the Lyme bacteria. Mine masqueraded as an autoimmune disease.

How many other "diseases" are Lyme? Without informed doctors and better tests we will never know. This is a huge problem that keeps thousands of Americans ill and out of work. Insurance companies won't pay for Lyme, but go along with doctors who deny that chronic Lyme exists. Lyme disease doesn't go away. It grows and debilitates. And it can kill. I was lucky to find mine after only five years. Most patients go seven years and to scores of doctors before they are diagnosed - if they are diagnosed at all. Lyme caught right away takes only about two months of antibiotics to cure. But most Lyme is misdiagnosed. So chronic Lyme can take years to treat. Why don't the insurance companies realize this?

Because Lyme is a bacteria, albeit a virulent one, antibiotics work against it. You start treatment, you get worse, you get better, you get worse - the bacteria's cycle seems to be every four weeks. It's a nasty bug. Some people, not knowing, start the antibiotics and get really sick within a few days - it's called the Herxheimer effect - so they stop their antibiotics. Big mistake. Because Lyme is intracellular and extracellular, it is often treated with two different antibiotics. Some people who don't have a good immune system are critically ill right away. They may require intravenous antibiotics and medical support. And if you have a co-infection, it has to be killed before the Lyme can be treated effectively.

If I got another tick bite, I would find myself a doctor who would treat me immediately, THAT DAY. I fully intend to be cured. After I started treatment, I was fairly sick for a time but just recently I have had the best three weeks in several years. This reminded me how I can feel again. I was lucky to find a doctor who is a member of the International Lyme and Associated Diseases Society (ILADS). These wonderful, true scientists are a growing group of Lyme-literate doctors who keep in touch with each other to combine their acquired knowledge gained through experience to recommend treatment for Lyme.

I know way more than I ever wanted to about Lyme and this is just the short version. I have been researching and reading and learning. I know this: If we don't start paying attention to this disease, it can become an epidemic - or has it already?

Sue Savod is now living in Diablo and taking her antibiotics. She is focusing on her career in animal portraits while regaining her health. Contact her at susavod@comcast.net.

Comments

Posted by Citizen Paine, a resident of Danville
on Jul 17, 2009 at 8:00 am

Whoa -- GREAT article! This is really a must-read for anyone who's active outdoors. Ounces of prevention were never worth more in terms of avoiding the need for "cure."

Thanks, Dolores and Sue!


Posted by Margie, a resident of another community
on Jul 19, 2009 at 6:53 am

This is a fabulous article, very complete. I live in San Diego and also
have lyme disease. After looking at many possible sources for my disease I am beginning to accept that mine probably started in the summer of 1978 after a bite while on a camping trip to the Sierras resulted in a swollen knee. My son was born in 1980 and is a lyme patient as well. I now wonder if even his started with that fateful camping trip since it can be transferred to one's unborn child.

Thank you for a wonderful well-written article. I am forwarding copies to friends with other autoimmune diseases whom I suspect really have lyme.


Posted by Sandy, a resident of Danville
on Jul 20, 2009 at 10:43 am

Thank you for sharing your hard-earned knowledge in this wonderful, informative article. I will print it and save it as a reference in case we ever have unexplained symptoms.


Posted by Georgia, a resident of another community
on Jul 20, 2009 at 7:09 pm

Thanks for this! I found out a year ago that I have been suffering from Lyme for years. I recall having some symptoms as far back as 15 years ago. I was originally diagnosed with "viral arthritis." Then came the diagnosis of Epstein Barr. Then three years ago my diagnosis changed to Undifferentiated Spondylo-arthritis. I went on one drug after the next with no improvement and potentially serious side effects. Pills, injections, nothing worked. I found a rheumatologist who sent my blood to Stonybrook University for testing. Western blot tests had always come back normal. Stonybrook's lyme test came back hugely positive. I have been on 3 months of IV antibiotics and my symptoms are nopt going away. I tried 2 simultaneous oral antibiotics when I wasn't on IV. My doctor says I should be on IV longer but insurance has denied me. Moral of the story.....get tested, don't take no for an answer. and fight to chnage the minds of insurance companies who only support the "standard" treatment for Lyme.


Posted by Chelsea, a resident of another community
on Jul 28, 2009 at 11:12 am

I am so glad that this information is getting out there for people to read. My six year old son was diagnosed with Lyme Disease a year ago. When he was 15 months old, he suffered his first seizure and has had them ever since. We saw a pediatric neurologist at Dorenbecker Children's Hospital in Portland and had many tests done that came back normal. Basically, we were not given any answers. Finally we were able to get into see Dr. Klinghardt in Seattle, WA. He immediately diagnosed our son with Lyme and started treatment. Justice is still having seizures, but his health is much improved. We know it will be a process for his complete healing. We have paid for everything out of pocket, since none of this "alternative" treatment is covered by our insurance. Dr.'s must become educated on diagnosing and treating this epidemic before it's too late.


Posted by Citizen Paine, a resident of Danville
on Jul 29, 2009 at 7:07 am

There is also some evidence that Lyme can be spread within families -- especially between sexual partners. What's known for certain is that both members of a couple are often infected -- what's not known for certain is why or how they both got he disease. Intimate contact is one theory (the spirochete is structurally similar to the syphilis bug). Then again, many couples also hike together, so the possibility of independent infaction also exists.

This concern is just one more reason to take Lyme verry seriously if you are infected -- and for more work to be undertaken to understand this under-"appreciated" scourge.


Posted by Lyman D., a resident of Blackhawk
on Jan 31, 2013 at 1:26 pm

Bears repeating, especially with all those tick-carrying critters around.


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