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Thursday, February 5, 2009

Lyme disease: Can you count by sevens?

A new patient yesterday.
A 50 year old female developed a flu like syndrome last May. She had fever, chills and malaise. She went to her family doctor and was told she had a virus. No therapy was prescribed. Two months later she complained of persistent symptoms. She now had severe fatigue, migratory joint pains, numbness and tingling and a brain fog associated with some memory impairments and difficulty concentrating. Her doctor didn't know what she had. she requested a test for Lyme disease. The two step ELISA/WB was positive for Lyme. She was prescribed Doxycyline for 28 days. Within a week she experienced dramatic improvement and was nearly back to normal. Her physician proudly pronounced her cured. Over the ensuing 3 months all of the original symptoms returned. A second round of Doxycycline was prescribed. When I saw her yesterday she was two weeks into the course and feeling a little better. The physician would not extend the therapy beyond this second course.

Lyme is treated for 14 days, perhaps 21 or even 28 days. That's what the text books say. After all, it is new disease, very mysterious, so confusing. Doctors feel obligated to follow the textbooks- to stay in their safe zone.

I once heard that doctors treat things for 10 days because we have 10 fingers on our hands. They treat for seven days because there are seven days in the week. Is this true???

Suppose a patient came into the same doctors office with sinusitis. Recommendations for the length of therapy vary, in part based on which antibiotic is chosen. Doctors are taught that antibiotics penetrate poorly into the sinus cavities. For the sake of this discussion let us say that the physician prescribed an antibiotic for 10 days. Perhaps the same patient returned after 10 days feeling somewhat better, but complained of persistent sinus pain and bloody green mucous. The physician then prescribed another course of antibiotics, this time for 14 days. Subsequently, the patient was still unimproved. The physician then ordered a CT scan which showed infection of the frontal and ethmoid sinuses. The concerned doctor quickly started IV antibiotics; after all, this sort of infection can spread into the brain and be deadly.

The point here is a clear. A physician will not stop treatment because textbook guidelines say that drug X should be used for Y days, for a particular infection: Y days exactly, not Y+1 or Y-2. No. The treatment stops when the patient is better.
Unless of course you have Lyme disease. Lyme has different rules.

Sinusitis is a common, generally self limited disease. Even without treatment it generally resolves. Lyme is a much more serious disease. Extension into the brain, past the blood brain barrier is the rule, not the exception.

What are these doctors thinking? Even the IDSA says its guidelines or just that, "guidelines." Treatment decisions should be individualized with each patient.

Perhaps they are not (thinking).


sicklywoodmancraig said...

Doctor, This sounds so familiar and is exactly what happened to me with an infectious disease doctor that I was referred to by my primary physician. Instead of sinus issues, I had extreme fatigue, drenching sweats, constant headache, loss of hearing, uneven balance, ringing in my ears, pain in all my joints and loss of feeling in all my limbs. That is until you began treating me. Virtually everything is now resolved and I feel normal for the first time in years. Thanks again.

Joe said...

Aah, so true, so frustrating. I had a EM rash, GP prescribed 3 weeks doxy, during which condition worsened. By no means better at end of course.

GP then prescribed amoxicillin to placate me, as he was certain the lyme was dead, but "some people have fatigue for a couple of months afterwards. It goes away on it's own".

By this time I couldn't carry on a conversation the neuro was so bad.

Then the ID(SA) doc came to the rescue with IV rocephin. For all of 3 weeks. I was no better at the end of this course of treatment - completely disabled by this time. My wife and I *begged* for more time on the IV.

The ID doc, often wrong, never in doubt, became very defensive and abusive. Telling me that he was 100% absolutely certain the lyme was dead (hmm, heard that a few months back), and that I just had to wait - do nothing, just wait - 3 to 18 months ( ! ) for the "post lyme" to resolve.

And I believed him.

So, I waited. Eight months later I had improved somewhat, but was still very disabled - all the neuro symptoms, you name it.

I went back to the ID doc to have him just kind of confirm that I was where I should be, and that I should just be more patient. After listening to me, presenting almost identically to the way I had originally, with minor improvement, he crossed his arms, stepped back, and said "I'm not sure what you have. I think you need to see a psychiatrist."

Say what?! What changed? The same set of symptoms were initially diagnosed as post-lyme, and are now not lyme related at all, and I'm a head case. Not lyme related because, of course, all the lyme is dead. If you're still sick, there must be something else wrong, like long-standing psychological issues. (I'm a pretty normal guy, aside from the lyme).

During this period of waiting, my disability insurance was denied, because I wasn't appearing to do anything to get better. But I was told to just wait...

It's now 18 months since I went to that ID doc. Guess what, I'm not better. Fortunately, I started getting abx treatment from a LLMD 6 months ago. I have some amazing herxes for someone who absolutely doesn't have lyme :)

I'm very slowly getting better now, but I wonder how much shorter my illness might have been if I had been properly treated from the beginning.

I've enjoyed reading your blog. Hearing about your legal difficulties makes me very concerned. For you. For all of us. What sane young doctor would want to consider a lyme specialty? It's a career killer. And I shudder to think what I'd do if my beloved LLMD told me he could no longer treat me. I just want my life back.

Thanks so much for your posts.

Michele said...

It is amazing what the IDSA docs can come up with if you are not better after their treatment. I heard allergies, neurological illness (even though I had a neurologist who had thoroughly checked me out), virus and I can't remember all of the excuses as I called the IDSA doc with fever, swollen glands, severe pain, fatigue, massive headache for months on end but there was always another reason. I no longer had active Lyme. She was sure. (I did and also had babesia)

MJ said...

How can an organization create a "guideline' of something they do not know precisely ? Americans go by the book, but which book works here? Is this ethical? Is this fair?
Please consider writing to “IDSA Lyme Disease Review Panel” at:" - as the blogger "grateful" wrote here.
Lets join our voices stating that their guidelines are wrong and are too limited to a incredibly wide spread illness - spread inside our bodies and spread all over the country due to them ignoring it! It is not fair to be in pain, to have so many symptoms and be treated with a 'Lorazepam' instead of having the proper antibiotics for the needed course of the illness; it is not fair to have 14 days of a treatment and then left abandoned and in pain during 18 months or more. If the Doctor can’t treat the patient it doesn’t mean the patient is the wrong one or lying. That’s the first point the guideline should consider. Second, if the treatment is working why stop it? Third, if the Doctor has not enough information should tell the patient, and study more!!... etc… lets defend our rights as patients, and help others like us, who don’t even have the opportunity of reading this so healing blog. I’m sick, but can still fight! Thank you Doctor for writing and trying to help us; we really appreciate your enormous effort, and compassion!
Maria J.

MJ said...

Moosie nothing changed, that was the problem. The Doctor noticed he did nothing good for you, so he threw the hot potato to you!! Not your fault, not that you said or didn't say. He clearly said it after crossing his hands - protecting him self - "I don't know what you have"!!!
So, yes, he left you hurting for so long, due to his ignorance and negligence. Now try to recover,
be very positive, try to smile and forget him; anger won't help!
God bless.