I see two problems with diagnosing a patient with Lupus before accurately ruling out Lyme disease. First, the treatment of Lupus by design compromises the immune system, which in a Lyme patient cripples its ability to fight the Lyme bacteria. Symptoms worsen, sometimes resulting in irreversible damage. Second, the drugs that compromise the patient's immune system make it virtually impossible to have a positive Lyme test. This is huge because so many physicians rely on a positive test for diagnosis. In my own case, two early negative Lyme tests were irrelevant because of the immunosupressive drugs I was taking. Four weeks into my IV antibiotic therapy, after all immunosupressants were removed from my system, I tested positive for Lyme disease. If I had not found a doctor who understood this, that test and diagnosis would never have come.According to Stricker et. al in Future Microbiology:
“…there is growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies. Persistent infection occurs in animal models and humans because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB. This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease. By contrast, the leading theory for persistent symptoms owing to ‘post-Lyme syndrome’, namely an autoimmune response triggered by the eradicated spirochetal infection, has not been supported by scientific evidence.”
Perhaps this is why, a year after I began treatment for Lyme disease, my ELISA and Western Blot IgM values are still positive for Lyme disease and climb when symptoms worsen.
If you are interested in reading more about the chronic Lyme controversy, Kris Newby wrote an insightful blog for Under Our Skin Chronic Lyme, Real or Imaginary which included the above quote. I pray for a day when science will trump financial gain.
"I pray for a day when science will trump financial gain. " Hear, here!! Yes. This is such a good post. I, too, was diagnosed with lupus before Lyme and when I went off a year of steroids, I suddenly had all-night insomnia, a new symptom that I'd never experienced in my life. I also immediately became allergic to nickel -- after 20 years wearing a watch 24x7 with no problem, there was suddenly a watch-shaped welt on my wrist. I still can't wear nickel. Finally, when I went off the 'roids I stopped being able to digest dairy. i was already gluten intolerant, so this was extremely unwelcome. It is amazing to me how much the steroids allowed the Lyme disease to fester and drill deeper into my brain and other places.
ReplyDeleteOne of the more annoying things about the lupus diagnosis is that people STILL think I have lupus even after I tell them that I NEVER HAD IT. I don't know what about the word "misdiagnosis" doesn't register with people.
It just doesn't make sense. I have a friend who's granddaughter was diagnosed with Juvenile RA and put on a ton of steriods. The whole thing started with a sudden rash and fever. Smelled like Lyme to me, but I had a hard time convincing people who believe in doctors to doubt the experts. Really eats me up.
ReplyDeleteOn a different note, My doctor wants me to do the Rocephin with an IV. I'm nervous. How did it go for you?
I am not doing any pharmaceuticals at this time, so I don't know. I hope it goes well. I know it's really strong for Lyme and it will be a big help. Careful of your gall bladder. Make sure your MD knows how to protect it.
ReplyDeleteIt worked well for the Lyme, but I lost my gall bladder on it. It turned out I had a pre-existing condition that my earlier doctors ignored. If you start with a healthy gall bladder, it's not as risky. I just came back from an appointment. My Lyme titers have climbed even higher and my doctor is really concerned in light of The bloodwork and some of the symptoms I'm experiencing. I need another picc asap. I'm dreading telling my girls as I'll be 4 1/2 hours away.
ReplyDeleteKim, I know a little girl with similar symptoms. I had the same thought, too. Juvenile RA is supposed to be very rare. It's hard to convince when they have confidence that they're taking their kids to the best. I know because I did the same thing. The problem is that by the time you realize its not working, you're in a really deep hole.
Alix,
ReplyDeleteI know what you mean about the lupus diagnosis! Once after defending my Lyme diagnosis to one doctor, his colleague came in and asked me, "How long have you had Lupus and how well did it respond to medication?"
I regained my composure and calmly responded, "I have Lyme disease and was misdiagnosed with Lupus. It responded very poorly to the Lupus medications."