Tuesday, January 6, 2009

Pneumonia, leg swelling and one sided paralysis

Two years ago a 32 year old female was admitted to the hospital for atypical pneumonia- pulmonary infiltrates and a high fever. Her illness was preceded by a rash on her legs, fever, cough and severe diffuse joint pains. In the hospital she was treated with two weeks of IV Rocephin and Zithromax, to "cover" her for various causes of pneumonia. When I saw her in the office for a follow up visit I noted a significant circular red rash on both lower limbs. Labs at that time showed an elevated CRP of 12, a borderline ANA antibody and a single 41 IgG WB Lyme band out of the standard 13 bands. I continued oral antibiotics. The rash improved within a couple of weeks. She complained only of fatigue and nausea. The physicians who saw her initially could not explain her findings. It was suggested that she had an autoimmune disease. The rash was biopsied. The findings were: non-specific lymphocytic dermatitis. She continued antibiotics for several months and generally did well. Additional symptoms included: persistent fatigue, strange visual changes and bouts of numbness and tingling. She developed right upper quadrant abdominal pain, suggesting gall bladder disease; this improved without intervention. After 6 months of antibiotics, she stopped them without consulting with me. I saw her about 2 months later. She had been hospitalized again. She had experienced acute weakness of her extremities and a loss of sensation in both legs. She also experienced transient double vision. The neurologists who evaluated her listed various differential causes: MS, stroke, Guillain-Barre syndrome and vasculitis. Her work up was negative. She was sent home without a diagnosis. In the medical history provided by the neurologist,"Lyme disease" was mentioned parenthetically. The verbiage in the consultation notes essentially mocked the diagnosis, treatment and physician.

Repeat lab testing showed that a C6 peptide antibody test sero-converted from 0.29 to 1.2. This information was not considered relevant.

The patient improved and her symptoms were stable when she came to see me after this adventure in the local hospital.

I explained to the patient that I felt her symptoms and findings were consistent with chronic Lyme infection. My exam revealed numerous neurological abnormalities- not noted by the neurologists. I don't think she fully believed me. She works in a doctor's office and was hearing many conflicting points of view. Despite this, she continued antibiotics for an additional 4 months.

Two months after stopping antibiotics (again!) she came into my office. She had marked numbness and weakness of the left side, upper and lower extremity. She had nearly absent pinprick and vibratory sensations of both legs. This time she was really sick. Her presentation was typical of MS or an acute stroke. I thought it was all Lyme related. She decided to follow my recommendations. An MRI of brain and spine were normal. She was immediately started on IV Rocephin along with a short course of IV steroids.

She experienced a brief episode of confusion. Within 4 days the weakness was improving. Withing a month she was 80% better. Within 8 weeks she was almost normal.

She has stayed on antibiotics and done well since this episode. She continues to have only minor symptoms. Her markers of inflammation have improved. Her CRP is less than one. Her ANA is negative. She continues to have abnormal physical findings which are slowly improving. Needless to say, she is no longer anxious to stop antibiotics. I think she agrees with my approach and has become a reader of this blog.

She came to me by accident. I was/am her primary care physician. I can imagine how things might have turned out if she had been treated by standard paradigms. Her primary care physician would have said: "I don't know what it is." A rheumatologist would have diagnosed a non-specific autoimmune disorder and treated her with immune modulating therapy. A neurologist would have diagnosed an atypical form of MS and suggested other therapy. She might be disabled with paralysis on one side of her body. She would likely suffer with profound cognitive deficits and diffuse pains.
Perhaps fibromyalgia would be added to the list of symptoms. It seems unlikely that she would be working full time and taking care of her young child. But she is.

These other physicians who encountered my patient on this journey are unaware of her story. She was a consult, an undiagnosed case- lost to follow up. They are busy- seeing new patients and are not looking back.

13 comments:

bitten said...

What symptom do you think made them give her IV antibiotics? Is IV roceptin a common antibiotic or do you think they suspected Lyme?

dogdoc said...

What would have happened if you weren't her PCP- many of us have been there. Undiagnosed and ever worsening lane.

Lyme report: Montgomery County, MD said...

Rocehpin has been around for many years. It is frequently used for pneumonia and other serious infections. The doctors never considered Lyme at all.

jenbooks13 said...

It sounds like she either had dormant lyme that was reactivated by some weird pneumonia bug or she had percolating lyme that allowed the pneumonia bug to overwhelm her. Doctors who don't understand how lyme can immunosuppress and simmer like that, would just see the pneumonia.

Is she still on IV--or was she able to switch back to orals? When do you make that decision (ie on what basis usually?)

If you ever get some time can you give up some updates on previous interesting cases. Like that guy who I think you referred to as having a 3-legged monster--he had bad herxes--etc. And the daughter who may have erlichia in her white blood cells. I wonder if anybody else in her family, asymptomatic, would have the same.

Dogdoc--if you're reading this--how did you and hubby get lyme? Do you think it was around your home? Do neighbors have it, too? I always wonder if it's possible that one yard/home is worse than another half a block away.

When I read this case I really thought, we have to change the name "Lyme" which probably won't ever happen. Lyme is the name of a nice little town in Connecticut. That is just too innocuous a name for a multi-systemic, multi-infection illness.

Lyme report: Montgomery County, MD said...

Lyme and tick borne co-infections can cause pneumonia. Interstitial lung disease can also be autoimmune in nature.

The guy with the "3 legged monster" remains a tough case. He developed Guillian Barre- improved with plasmapherisis. Big autoimmune componenent. Good news: Hematologist- young and new- is open to Lyme. We discussed the use of IVIG for some patients which he does in office.

lymie said...

There have been a few reports of people with serious episodes of lyme getting help when they show up at a hospital, especially the ER. However, in general, the experience is bad and some of us have decided to tough it out instead, skip the ER, because of ignorant doctors who mock and do nothing to help, like the one in the case you described.

PatJ. said...

I would like to add that this "multi-systemic, multi-infection illness" generates "multi-symptomatic patients" who scare to death regular Doctors who end up prescribing Lorazepan to calm the "anxiouss" patient and send him/her to other "specialist" who would have to deal with the hot potato. And of course, the patient would end in the ER and with all those conditions mentioned above in this column.
I am one of those patients and I am not in bed dying painfully thanks to this blog, funny ah?
God is big!

dogdoc said...

jenbooks- Could have been anywhere. We have been active campers/hikers and outdoors in the mountains of everywhere we could since college. I have pulled tons of ticks off over the years.

dogdoc said...

Forgot a question- no neighbors have it that we know of.

bitten said...

What is the story on IVIG causing cancer?

bitten said...

jenbooks13: many think the name should no longer be Lyme but changed to something like spelling out Bb. I think it will be hard to do but maybe and I'm not sure it matters at this stage but agree.

bill said...

In this area of MD entire family's are infected. Where ever they have changed the ecological function of the land and of course the forested areas are the highest risk. New McMansions built with deer now in their back yards where this used to be the deers natural habitat. Mice are around, squirrels but the people want their new homes so this is the price. That, without a doubt is the biggest factor. 13% of construction workers are infected. So thankful for those developers.

kaney said...

The general cause of a leg swell is the additional fluid that gathers in the lower extremity tissues. If this swelling remains and is indented by a finger it is termed as Edema Pitting. There can also be other less usual causes for this problem that include Eosinophilic fasciitis and scleroderma which result in the thickness of the skin.

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