Think about patients who benefit from long-term Lyme treatment
Stephen Walker of Cambridge, MA, wrote the following letter to the Boston Globe. It was published August 8, 2016.
I am a patient with Lyme disease who has benefited substantially from long-term antibiotic treatment. I write in response to your Aug. 3 editorial on recent legislation regarding Lyme disease (“Two votes on health: One wise, one emotional”).
I question your assertion that a two- to four-week regimen of antibiotics almost always kills the borrelia bacteria. No studies show 100 percent eradication of the bacteria using normal antibiotic therapy. Studies that claim no benefit to “long-term” antibiotic therapy consider only a few months as long-term. Chronic Lyme disease takes years to treat, just like tuberculosis, and any studies that compare treatment durations should define “long-term” as years, not months.
The Globe could interview researchers such as Dr. Kim Lewis at Northeastern University, or Drs. Ying Zhang and John Aucott at Johns Hopkins, who have found the persistence of borrelia bacteria following many weeks of antibiotic exposure. Or interview physicians who have successfully treated thousands of patients by using long-term antibiotic therapy.
The “chronic aftereffects” you cite are actually the symptoms of an active infection and include paralysis, cardiac abnormalities, cognitive and sensory-neurological disturbances, and debilitating pain. Lyme can affect every system of the body.
Tick-borne diseases can be very serious and sometimes fatal, and cases of infection are increasing in Massachusetts.
The editorial notes that “anecdotes, no matter how compelling, aren’t a substitute for scientific evidence.” My life is not an anecdote, and I am insulted that the Globe would assume that it knows more about what is best for my health than me and my physician. Three years of antibiotics has reduced my symptoms by about 80 percent. Is the Globe suggesting that I should suffer from a treatable illness rather than continue a treatment that is working?
The Legislature did not mandate a treatment; it eliminated an economic restriction that was preventing treatment and mandated the option for clinicians to provide proper care to their patients. This sensible law will save money for insurers by allowing patients to get treatment before the disease progresses.
Stephen Walker, Cambridge
Stephen…thank you for your post. My life and chronic Lyme are not an anecdote either. They have no idea how painful this disease is. I hope insurance begins to pay here in CT for my IV antibiotics. Pretty sad to be a client of Aetna for years and they wont pay for my IV antibiotics. I have been doing this form of treatment for 3 months and it is comforting to hear from you that “slow and steady” improved your health by 80%….I feel better knowing that!
Well stated. My husband & I required 3 years of a pulsed antibiotic & anti parasitic treatment regimen with many supplements, pre and probiotics, and adrenal supports. As Stephen’s letter states – this complex illness takes years not weeks to treat when it’s gotten into the central nervous system. We’d be dead if our doctor stopped our treatment after 21 days! Also – it takes a whole lot more than doxycycline to beat this crud! For direction, contact your local Lyme support group.
Madison Lyme Support Group
Thank you for taking the time to write such a well-crafted defense of the thousands who are suffering.
I’m in late stage Lyme also in the cons .. Been on 2 rounds of pic line antibiotics and 4 oral I still have major symptoms in my joints , headache, brain fog and major anxiety, now I have to see my heart dr. Yippie and the list goes on . I’m so tired my Lyme dr only believes in 28 day antibiotics.. What to do next . Just had another Lyme test done today ..now waiting on the results.
Thank you from Belgium for this great answer. It is sad to see such bad journalism and desinformation coming from The Boston Globe. Chronic Lyme disease is an awful and heavy devestating illness, and indeed, needs years of treatment to get better, included long term antibiotics, if you’re lucky. To The Boston Globe I repeat your words : my life isn’t an anecdote either, I am a human being, and every sick human being needs the best treatment possible.
When are they going to start listening? 25 years and counting! I have three young adults going through the same thing! Is this going to be their life as they know that!
Thank you Stephen for writing such a powerful and true argument…
Kudos, Stephen.
I would be very interested in any responses you receive from the Boston Globe editorial staff. Don’t you wonder who is in charge of what’s allowed to be published there? Very poor, agenda-driven reporting.
Thanks for standing up in the fight and shining your light.
Best wishes to you in your ongoing fight to regain your health.