I graduated from medical school 26 years ago. There were 36 hour shifts of on call duty, first as a 3rd and 4th year medical student and then as an intern and resident. I was dedicated. I was totally immersed in a parallel world- the medical world, oblivious to the reality outside the hallowed halls of my hospital. During rare undisturbed moments in the on call room I studied medical texts and current journal articles with inimitable intensity. Shoes were left on in anticipation of the beeper's call to put out the next unknown fire. Those were heady days. Much has happened since. And yet- much is the same. To date medicine has been a satisfying avocation- "Its more than a job," my father, The Physician, would frequently quip. As was usually the case, he was right. Some days, some moments are just better than others and leave an indelible mark. Today I had one those moments.
My ALS lady came back today. Call in motor neuron disease or Lyme imitating ALS, whichever pleases you. When I saw her a month ago for the first time, I cried as I previously posted. I thought the the horse was long out of the barn and that I was hopelessly trying to close the gate. It has never ceased to amaze me the extent to which patients can thwart our prognostications.
I walked into the room. Her head was held up high and she beamed at me brightly.
30 days of Rocephin. She WAS strong enough to hold her head up. She was able to eat and to swallow. She had gained some weight. Ever so slightly, she had begun to move her previously useless right hand.
Unbelievable- She's going to get better! I walked out of the room- with the slightest of tear- this time, a tear of joy. Yes- this was a good day.
12 comments:
Thanks so much for keeping your readers updated. I really appreciate all that you write.
I am also very glad to hear that your prior despair has turned a bit towards hope and optimism for this patient.
What an encouraging post! Thank you for all of the time and effort you put into this blog, as it is most informative for many of us.
I notice that google has a link to World TB Day on their search page today. Perhaps one of the more eloquent and informed posters who peruse this site could send in a proposal to proposals@google.com to have information on lyme disease featured on their page.??
How rewarding!!
Please keep us posted on this patient in as much detail as you can, as it helps those of us in a similar boat. I am curious if this woman had any sort of respiratory or paralytic symptoms -- i.e. difficulty breathing from diaphagm paralysis, choking sensations from esophagus spasms, etc. And does her difficulty sitting up have to do with autonomic dysfunction? How about the difficulty speaking that you mentioned previously? And how long will you keep her on the Rocephin? I am so happy for her that the Rocephin is helping.
Our tears of happiness join yours, hurray!
Very happy knowing there's hope for her; as I said, God is big and He is with us no matter the many Doctors who abandon us. Thank you so much in the name of this patient, and in our name, the name of the many patients that are surviving and having a better life thanks to your effort and to this post.
I really had that tear of joy and it is because I can imagine how much this moment meant to her, as a human being been able to lift her head, just to show you, proud and happy. And knowing you had that tear makes me cry of happiness knowing that you had a reward after so much effort and that helping people really makes your day. We all are proud of her and of you!!!
God bless!
The positive reaction may not indicate that the symptoms are caused by Lyme. Ceftriaxone has been identified as having beneficial effects on people with ALS by helping with glutamate transport, not by acting as an antibiotic:
http://tinyurl.com/k4onx
The real test will be if she continues to improve, or if this is just a temporary improvement.
Thanks for the update.
I hope the improvement continues, it must be amazing for her family.
Regarding Bleem's comment, as far as I know, the human trials of Rocephin in ALS didn't show a significant response, but I could be mistaken.
I have come across an ALS case who presented with marked dysphagia. Her generalised weakness markedly improved with IV hydration, but in time her ALS symptoms took her condition downhill again.
As an aside, the lady's dehydration would not have got so bad if her family doctor had not told her to try treating it with a one week course of tablets. Of course, she couldn't swallow them. As Homer Simpson would say "D'oh!"
So she did not have ALS? One is frightened by the thought of the suffering due to Lyme misdiagnosed. My tear of joy came after my long battle with Montgomery County on treatment. They sent me to an honest, knowledgable IME and she said "This patient needs at least 3 mos of IV antibiotics if not longer" So I am getting 3 mos of Iv and disability pay to stay home. My faith in humanity has been restored for the time being as I am sure she was pressured to change her recommendation. My employer just fought and fought treating me and got ivory tower docs to change their statements but this one doctor stuck to her guns and for that I feel blessed today. (They are fighting the disability pay but have not learned. I am still under court order as Total temporary disabled and I will win the pay. It is the law)
I found your 'Today I Cried' article really sad but what a terrific outcome. Hopefully her recovery will continue. I live in Ireland and regularly follow your posts. Keep up the great work!
About that comment of "Bleem", if the patient doesn't have Lyme but is getting better with the treatment the result is the same: "tear of joy"!!! The point is to help her!
My case is the opposite, "tear of sadness": went to see a specialist in "infectious diseases" and he said that it might not be a bacteria but a virus, one called "fibromyalgia"? (excuse me?) and then after I told him I suspect Lyme he said: "it might be, yes, there's Lyme in your country in South America, is it Colombia?" - I almost laugh in his face, ignorant!!! but preferred to get out of there as fast a possible to avoid getting sicker seeing that this Doctor had a nasal dripping, hearing loss and difficulty concentrating, all of which show he might be the source of contamination more than the cure! Ah, but he ordered me some testing - after my sister begging him for 15 minutes - he wrote: Lyme test, sputum and EVB without specifying what type of test, any kind of code, nothing! And then I had to pay for the "consult"??.. What a good business is to be a Doctor!
With my heart I share with you and your patient many tears of happiness. One hour of feeling well is more than what we wish; being able to improve means hope for life!
Thank you so very much for the update!
I appreciate all your posts, but especially this one!
I only wish there were more MD's like you.
Many thanks!
Studies have incidentally shown a high level of Lyme antibodies in ALS patients. By definition, one cannot diagnose ALS until all other causes have been ruled out. There is clear data about Lyme acting as a cause of an ALS like syndrome. By this definition the patient has Lyme disease, not ALS. A rose by any other name... There have been ongoing studies with the use of Minocin and Rocephin in ALS- interesting.
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