Every once in a while a patient surprises me and makes it all worthwhile. This is such a story. A 17 year-old female presented in my office in a wheelchair this past spring. She was holding her head, her neck flexed, her face invisible to me. Severe unrelenting daily headaches were unbearable and driving her mad.(in the British sense). She was disoriented - cognitive impairments were profound. For me the most frightening aspect of her presentation was profound weakness. When I asked her to get out of the wheel chair her thighs muscles appeared to contract in a floppy, asynchronous fashion. The analogy that came to my mind was a fish hopelessly flopping on the deck of my boat. I quickly asked her to sit back down. After examining her I thought she was suffering with a severe motor neuropathy.
She had a well documented diagnosis of Lyme disease. She had been treated by another physician in a nearby state with oral antibiotics for an entire year. Despite this, her condition had steadily deteriorated.
I knew that the only treatment that might be effective was IV antibiotics. I ordered a PICC and started Rocephin. I saw her back in two weeks, as is my practice. She was no better. At that point I decided she should be evaluated in a tertiary care center. I sent her to Georgetown. I have found Georgetown more Lyme friendly than hospitals in my own state.
My experience had been with adult side. She was 17, so she was admitted to the pediatric ward. A neurologist barely peaked at her. No EMG/NCV test was performed as I requested. The ID doctor stopped in for a moment I was told. The attending pediatrition diagnosed fibromyagia and a somatoform disorder - a psychiatric condition. The good doctor wanted to stop the IV antibiotics. The youg lady's father insisted otherwise (with some vehemence I suspect) and won the day.
After a few days she was sent to the National Rehabilitation Hospital. This was helpful and she got stronger. The doctors there also reluctantly agreed to continue the Rocephin. Two weeks later she was back in my office.
She looked better. A little better. I felt encouraged and continued the treatment. The brain fog lifted a bit. She asked me if she would be able to attend an important camp activity three months hence. I looked at her in the wheel chair and said: "we'll see."
And then something magical happened. She started getting better - fast. I used the regimen which has served me best. Rocephin layered with Zithromax and the Flagyl IV. I also prescribed Mepron for Babesia symptoms.
After two more months it looked like she might actually be able to go to the activity. A positive thing for her is that she forgot how sick she had been as she improved. Not only was she out of the chair, she was running and dancing.
All of her symptoms gradually began to peel away. She had missed a whole year of school and was now reading and catching up on her studies.
After 3 and 1/2 months, she was looking good. Essentially back to normal. She did no get to go to the camp activity, but she did go to her family beach vaccation, sans PICC line.
Doctors are afraid. They are afraid to prescribe IV antibiotics. To do so you need to be on staff at a local hospital. You have to face the scrutiny of the Infectious disease doctors, the neurologists, the hospital board and various attendant committies - And possibly - the State licensing board. It is safer to prescribe oral antibiotics, to keep plugging away with all the oral medicines in your arsenal. Harder. More. Something will work if you keep trying. It is safer.
What else is there to do.
What amazes me is doctors are so willing to go along with a treatment plan that shows no improvement in patient condition but dismiss a plan that does show definite improvement.
What 17 yr old wants to be non functional and in a wheelchair?
I worked Peds for over 25 yrs, the final diagnoses in many cases were either "viral" or conversion or somatic disorder. They would accuse these teens of faking.
I never saw Lyme diagnosed in my entire career in CNY. I hear there are a few cases diagnosed now but poorly treated and then they go back to the standard Viral or Somatization diagnoses.
If the majority of docs were willing to treat appropriately they couldn't punish them all but don't see that happening anytime soon.
I thank God for physicians like yourself (and my own LLMD)who are brave enough to face those fears for those of us suffering from this disease. Thank you for giving me hope for the success of my own IV treatment.
Thank you so much! I live in another country where it is basically unheard of to treat Lyme, at all! Not even for the first 30 days. I was told I was just depressed. I actually thought that my doctor might be stupid. Who diagnoses a very sick person, that feels like they might be dying from some flu-like virus, as being depressed? I actually thought that this doctor didn't hear me correctly. 3 years later, she told me that she knew I had Lyme disease but she is not allowed to treat it at all. She said all my specialists knew that I had Lyme disease all along, but they can't treat me in this country. I have been screaming and writhing in pain for 4 years. I ended up in the emergency room twice last week. My LLMD says I need I.V. immediately, but I have no more money to travel. I am broke and have huge medical debts. We begged the emergency room doctors to help us find a doctor who could help me. My family was crying and desperate.
Doc -- over the past few weeks, this blog has been both a boon and a bane as I struggle with my own diagnosis.
I was bitten in mid-August, and caught the blistering rash quickly. The ER doc misdiagnosed, however, and treated me for "cellulitis" with Bactrim DS and Keflex. My PCP took me off Keflex a day later, leaving me on the Bactrim.
Five days later, I had fever, chills, and the first panic attack I've ever had. In my panic, I thought it must be a reaction to the Bactrim. Back to the ER I went, and was taken off the Bactrim.
The next day was brilliant -- I felt tons better, with energy and was laughing again. Then, after that, my knees started to swell -- first the leg that was bitten, then to the other leg. I went back to my PCP, who recommended glucosamine, and did a inflammation marker blood test. That came back clear, and so, for ten days, I was without treatment.
On the day of my best friends' wedding, I could hardly stand with him. I went to the PCP the next Monday, asking for a Lyme test. I was put on Doxy for 14 days, and sent on my way, awaiting test results.
Second dose of Doxy was met with headache and dizziness. Was it a reaction to the meds or the bugs dying off -- I'll never be sure. The doc pulled me off doxy and put me on Ceftin. The diagnosis was made a few days in -- positive for Lyme -- and I've now been on Ceftin for 17 days.
In those 17 days, I've shown some improvement, only to have my knees and calves swell again; there are swollen knots along the muscles thigh where I was bitten that are frightening me; and some GI issues (heartburn and loss of appetite) that I cannot be sure are co-infection or anxiety, as I've been more than a little panicked.
Zegerid and simethicone seem to be working for now so that I can force myself to eat and keep taking my meds. Blood panels keep coming back okay, if elevated for glucose (living off of ensure and yogurt for a few days).
I was referred to a local infectious disease doc. I am very wary of the appointment, yet still hold out a little hope; the local LLMD I was referred to cannot get me in until after my antibiotic runs out.
Trip to the ER two nights ago revealed a ruptured ovarian cyst, resulting in some puffiness and bloating in the abdomen. Would this issue inhibit my recovery on the Ceftin? Any recommendations for a wandering soul who is in a (not-so) slight state of panic? Suggestions on questions I should ask the ID specialist to determine if this is going to work for me?
Any info you could offer would be greatly appreciated...
Thank you for being brave, for taking care of us and for doing your blog!
Thank you for this post and for this very informative blog. I would really appreciate it if you could explain what factors into your decision to put a patient on IV antibiotics verus orals? Is it based on how sick they are, or on seeing specific symptoms? Or do you always start with IV first? Also, at my local support group yesterday, there was talk of some doctors (including the LLMD practice I'm going to) using very high dose amoxicillin instead of IV and I'm wondering if you have an opinion on the efficacy of this approach. thanks!
I live in Texas. I have suffered with a disabling condition for 5yrs, diagnosed with Lyme since '08. No therapy so far, like Cowden Protocol phased my illness. I was recently put on the therapy you highlight ( IV Azithromycin + IV Rocephin) for a lung infection. "All" my symptoms began to disappear and I became more functional in 24hrs.
I begged them to continue treatment, but I was refused; all symptoms came back with a vengeance in 72hrs.
I can't get treatment here. Where should I go????
Good doctor. Thank you for helping her.
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