Search the LDRD

$25,000 for Lyme research

I'm pleased to pass along a bright spot of news for chronic Lyme disease sufferers. According to an article in today's MarketWatch, researchers at a biotechnology company were gifted by an anonymous donor with $25,000 towards a new study to try to unlock the mystery of Lyme disease. Why do antibiotics only cure some cases of Lyme?

Researchers at Viral Genetics, Inc., are hoping to answer that question and more.

The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.

"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.
|

Chronic Lyme Disease

Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.

Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.

Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.

Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.

Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.

Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.

|

Scientific evidence ignored

If you are struggling with late stage Lyme disease symptoms, the last thing you need is anyone telling you there is no such thing as chronic Lyme. Yet that is what doctors, many who seem genuinely interested in helping their patients, are doing.

Doctors who defend the IDSA's guidelines for the treatment of Lyme -- thirty days of antibiotic therapy -- as sufficient say there is no scientific evidence to prove that Lyme disease can enter a chronic stage. However, Ginger Savely, RN, FNP, who treats patients with Lyme, says that thousands of animal studies do offer scientific evidence that Lyme bacteria survive beyond the recommended one month course of doxycycline. Yet these studies are overlooked by the IDSA.

"Of course, we can't do the same kinds of experiments on humans as we can on animals. So just because we don't have the human studies out there, the IDSA always wants to ignore all the many, many animal studies that there are, basically just saying, well, those aren't people," says Savely.
|