Monday, June 15, 2009

The accidental patient

I just saw a 32 year old female. This is the patient that I dread to see. She saw my associate for a routine physical. My associate does not treat Lyme disease. The patient complained of severe brain fog, memory loss, inattention and confusion. These alarming symptoms had been increasing over a period of several years. She even told my associate that she felt like she was developing Alzheimer's disease--at age 32. My associate ordered a few lab tests; she threw in a Lyme WB. The results: IgG 41 and 39 bands present. This meets the IgeneX criteria for a positive Lyme test. According to IgeneX the presence of these two bands indicates Lyme exposure with specificity of 96%. Of course IgeneX is looking at their own assay; there is no real basis for transposing this data to WBs obtained elsewhere, even though his may seem logical.The patient researched her symptoms on the Internet. Lyme disease frequently popped up on her browser. She is confused. Does she have Lyme disease? If so, how is it treated. Internet sources inform her that treatment ranges from 28 days to lifelong. How is a medical consumer to make sense of this and other contradiction? Throw more in the mix: She is trying to get pregnant, now what? Can Lyme be passed to the fetus? She has read this on line. On the other hand, aren't antibiotics dangerous to a developing fetus and just dangerous in general.

My exam showed peripheral neuropathy: nothing else concrete.

Cognitive problems are difficult to prove. For the most part the patient's subjective report of symptoms is all you really have to go on. Neuro-psychological testing can be ordered but these tests are nearly impossible to interpret without a before and after. By the time patients present we only have the "after." The tests are expensive, time consuming and rarely covered by insurance companies. What then?

A brain MRI and brain SPECT scan are good starting point. They may be normal or abnormal.
If the brain MRI shows white matter changes a neurologist might to chalk it up to migraine , early MS or vasculitis. A rheumatologist will likely concur: vasculitis. A psychiatrist might suggest depression.

Further Lyme WBs may be positive or negative. Co-infection testing may be positive or negative. From the perspective of other physicians I have found that little credence is given to these results even when they are positive.

This young woman with very troubling symptoms showed up on my schedule for 15 minutes to review "lab results." If not for the 39 band on a WB she probably would never have seen me.
It became my job to introduce her to a medical parallel universe, within the allotted time.

Being an "LLMD," if that is what I am- can sometimes feel like a curse. Ignorance is bliss. But I became a doctor to help people- that is who I am- that is what I do.

How do this tell this young woman that she is lucky she came to see me on this day?- it sounds arrogant, even to me. She may see countless other physicians who will conclude that she definitely does not have Lyme disease. As an "erstwhile" neurologists friend once quipped: "Why is it that you know something that no one else knows?" Why indeed.

I am amongst the very few that believe in chronic Lyme or for that matter the existence of neuroborreliosis it seems. I get no support from local colleagues or local medical institutions held in high esteem who believe my views are incorrect and misguided. Furthermore, they point to the dangers of long term antibiotic therapy for a non-existent illness.

I have but 15 minutes to inform and instruct her. All I can do is order the tests outlined below and give her a lot of reading material. I can ask her to watch Under Our Skin--which my patients tell me is now difficult to find. I direct her to "Cure Unknown" and the ILADS website.
My blog is not a good starting point. It is generally only helpful for those already steeped in the Lyme debacle.

I do not know if she will follow through with any of my recommendations. Lyme patient's with cognitive deficits have trouble reading and processing to start with.

And then there is the problem with family members. They dismiss the diagnosis of Lyme disease and frequently ridicule it. It doesn't exist. They disparage the treating doctor(s) and offer no validation of the patient's suffering or pain. This may lead to depression and feelings of alienation and hopelessness. The high fees charged by many physicians further reduces their credibility in the minds of many.

No this is not the patient I want to see. Not today. Perhaps selfishly I would rather see the patient who has already seen 40 other doctors, those who know more about the nuances of Lyme than I do. If I charged high fees the uninitiated would be weeded out: life would be so much easier.

Treating such patients(the one described here) is a risky business. It is not insurance companies who have "turned me in," contrary to public belief. No, it is my colleagues, members of the IDSA, who have been anxious to report me to the Medical Board.

The anger which I once had is gone. It is pointless and emotionally draining. As the smoke has cleared I am overcome with a new found sense of humility. After all- who I am really- a lone voice shouting into an empty wind only to hear the echo of my own voice.

I put myself into the patient's shoes. How can this one doctor have special knowledge about my illness? It admittedly does not meet the sniff test. She may ultimately see an assortment of specialist who may politely or not so politely tell her that I am a quack- or just wrong at best. Although it is not Lyme disease, no diagnosis will be found. Perhaps years later she will come back with a progressive, mustisystem illness- perhaps with an infected child. Or maybe, after looking into the matter she will decide to return for me to treat her. Time will tell. I cannot control the decisions of others. I can only control my own decisions.

I have no confidence that the IDSA "review" of its guidelines will bring us any closer to the truth.
The public debate in DC is set to occur this July. ILADS is armed with great speakers and a plethora of facts and published scientific studies. But ultimately the IDSA will be passing judgment on itself. How can the accused party fairly judge itself? This runs contrary to human nature.

The light of truth will eventually shine on this national disgrace known as Lyme disease. How long this will take? Nobody knows. We do our best and sail on through the still stormy seas.

I love being a doctor, I always have. Still--some days I wish I were a fisherman, sailing into challenging whimsical ,unpredictable seas-seeking elusive tuna or other prizes.

Perhaps this is what I do after all.

19 comments:

Joanne said...

Very well said except for one point, this is not just a problem in USA as I know you are fully aware.

Without such dedicated doctors where would we all be?

Here in UK this little boy has at last been diagnosed with Lyme through rigorous tests done in Germany. http://smnthandcoindoncaster.blogspot.com/2009/06/so-angry.html

Now the next hurdle how to get him adequately treated?

That's one more reason for all you devoted doctors to do what you do and share with others.

Thank you.

Renee K said...

You are doing what a physician is supposed to do, helping patients, and somewhere along the way you will be rewarded for it. I am sure you have helped many already, isn't that what keeps you going?

The general public is getting smarter, questioning more, using alternative health providers more.

Many patients are discouraged with the care they receive with diseases other than Lyme. They research, they ask questions. Many have found that taking a "magic pill" isn't the answer. I saw it in many patients coming into the offices I worked in and it unnerves many physicians causing them to become defensive, but some are starting to listen.

Of course all bets are off if we get a socialized medical plan in this country. Then where do we go?

Sherlock said...

Keep fishing, you are doing a great job!! You are not alone in the ocean.

Grateful said...

You are the treating physician for a dear relative of mine. I thank God every day that she has found you to help treat her Lyme disease. She (we) don't expect a perfect cure. We are thrilled to find a compassionate, open-minded physician who is willing to listen and read, research, and help those with her complex disease. We know you have a very difficult job and are in a hard position as a doctor on the cutting edge. For her, for her husband, for me and from the rest of my family: we thank you from the bottom of our hearts.

PatJ. said...

Sailor and fisherman, but not a lonely voice; quite the opposite. You are our voice; the voice of the ones who are not believed by the medical personnel; the voice of the ones loosing their abilities and being considered old or funny by even our closest relatives; you are the voice of the so many IDSA deny PROPER treatment by considering them chronic or post-lyme patients. Sorry that we are not the strongest people to support you, and help you in such stormy times, but our hearts and infinite thankfulness might pay for your loneliness!
I don't know how much comfort can you have knowing that for me, and for many other patients, having someone that believed in my symptoms and that showed the will to help me, was such a vindication of so many hours of pain and suffering, and especially rejection and humilliation from so many Doctors... even someone in my family said: well now no one can still think you are hypochondriac.. ah?
Never alone Doc!!
For the ones that want to see parts of the Documentary "Under Our Skin", you can go to youtube and look for so many videos under that name and using the search "LYME". just click here and have a long surf: http://www.youtube.com/results?search_type=&search_query=under+our+skin+documentary&aq=4&oq=under+our+
Or click here: http://www.youtube.com/watch?v=sxWgS0XLVqw

Thank you so much!

PatJ. said...

Sorry my addresses don't seem to work as links, so,if you want to see videos, go to www.youtube.com
and write in the search: under our skin. This will bring you to many different videos, part of the big documentary that was presented to the public. Also, you can write in the search of youtube: lyme or lyme disease and you'll see tons of videos from different people and organizations.
Hope it helps to share the voice that has to be raised out loud!!
God bless!

Ramilin said...

I couldn't agree more with GRATEFULL.

I am one of your patients and I came to you because of your willingness to help us lymies. I travel far for your care and it's worth every penny I have. I need you. Us lymies need you. So many doctors turn their backs on us, you don't and never will. You help give us hope. And with a curse such as lyme, we need hope.

Spinhirne said...

I am impressed by the high level of discourse here at LymeMD. Volunteers at our nonprofit moved beyond anger and blind reliance on agenda-driven science long ago. It is really the only way we are going to improve the worldwide disgraceful handling of borreliosis.

Our website is at www.seranogroup.org

OBLIVION said...

You are unaware of the reach you are having - I am from Australia and I have a tough time ahead of me to get diagnosed and treated for Lyme. Your disclosures may prove invaluable in my situation. I had never heard of Lyme until 2 mths ago when I saw a picture of my bulls-eye rash from a decade ago. I was told I had rheumatic fever and was autoimmune with MCTD etc. I just hope you may be willing to consult with my doctors here, or help with any advice. I only wish I had become an accidental patient of yours when I was 16. www.lymegreenaustralia.blogspot.com

lymie said...

Patients who are not convinced they have lyme disease will not be ideal patients, and have even caused doctors trouble later on. So, in the current political situation, you are right to be concerned when someone like this shows up.

girl mark said...

Is it possible to turn some of your earlier blog entries into a "Lyme 101 In The Opinion of LymeMD" sort of website? I know you talked about a book earlier on, and I know it's an enormous amount of work to edit one, but how about something in between a blog and a more formal piece of writing- just a 'best of LymeMD' site? Honestly, you can just use blog software to organize it, or use a similar software such as Drupal or hosted Wordpress, and with both of them it's possible to have the hosting be anonymous so that you're not deluged by people who aren't your patients.

I always send newly diagnosed friends to this site to learn more about Lyme, and I tell them to look at the May-June 2008 entries and work their way backwards, but the Blogger site makes it hard to do searches and a chronological blog format can be a little hard for the neuro-challenged to navigate.

I think all one would have to do to make a "Lyme 101" site out of the blog would be to move a few entries over to a new Wordpress site, you wouldn't have to edit anything or really write any new material.

Isabel80208 said...

Under Our Skin is not currently selling copies because the movie is about to be released. They will resume selling them after the national theatre showings with additional bonus clips that they had to cut.

Not sure if it is relevant but I have neuro lyme and went through exactly what your patient is going through. I was told by my MD that my cognitive problems were normal for my age at 37. Now at 41 I am deeply entrenched in this struggle. I'm just starting antibiotics.

I am documenting my journey at my blog. www.mylyme.typepad.com. just for this reason. When I first thought I had lyme, I was looking for a story that sounded like me so I would know for sure. Maybe reading it would help her.

You and the rest of the LLMDs are a blessing to us and the only hope that we have. Please continue for our sake. Thank you.

Kara said...

All I can say is "Hang in there." You are helping patients regain their health. That's what a dedicated doctor is supposed to do. I love reading your blog.

It took me 8 years to get diagnosed. Doctor #28 (As near as I can figure.)

At age 34, my Lyme symptoms also began with brief periods of brain fog and dizziness, slowly increasing until I had vertigo and brain fog 24/7. After 2 years of that I all of a sudden couldn't function. I didn't know how to make a hard boiled egg for my then 4 year old. I couldn't find a pan much less be able to cognitively go through the process of cooking the egg. Soon, I was pretty much in bed all day every day with horrible, painful symptoms.

By the time I saw doctor #28, I was severely malnourished, on IV nutrition, had severe chemical sensitivity and at least 50 other symptoms. When my labs came back he couldn't believe I was still alive.

Two years later, I am about 75% recovered. For the most part I am fully functional. Still have quite a symptom list but I am not effected much any more. I am still extremely chemically sensitive. Working on that with NAET. Having terrific success with a very competent practitioner.

My husband and 2 girls also have Lyme Disease. Looking back at my medical history, I am confident I contracted Lyme from my husband shortly after we were married -- 19 years ago. Our blog http://15minutesofdelusion.blogspot.com

Hang in there and keep up the good work! There are many people who need your expertise and knowledge to save their lives.

Kerry said...
This comment has been removed by the author.
Kerry said...

My husband, now 35, has potentially been suffering with Lyme for 20+ years. He started being treated by a LLMD 4 mos ago. No improvement. He told me he feels like he has alzheimer's. He is slowly and literally losing his mind. We are hitting him hardcore with a new round of abx, but likely starting IV next week. I do not think this is going to be enough.

Thank you for doing what you do...

rickadeemus said...

You think Lyme Disease gets no respect or credibility....try Fluoroquinolone Toxicity Syndrome - that's what I have, as a result of taking Avelox for a sinus infection. I'd say 95% of doctors don't even know what FTS is, and that it is caused by fluoroquinolones like Cipro, Levaquin, and Avelox, which are sometimes used to treat Lymes. THe adverse effects of these antibiotics can be as bad or worse than Lymes.
The damage is long lasting and sometimes permanent. I couldn't work for a year and had to research and discover the cause of my "illness" myself, with NO HELP from the med. community. Please consider ADRs from Fluoroquinolones as a possible cause to your patients' maladies. Check:
www.fqresearch.org

mother of 11yearold-FNP said...

you are absolutely right. Even from the side of a patient trying to bring a dr. up to speed. I have to decide who to see in NYC area for my 11year old. I hesitate seeing the local neuro or rheumatologist referred by my ped and waste time so I'm going to New Haven specialist. FNP has moved to right side of face so I feel as though I've been prescribing to ped and want someone with more clinical experience. Good luck, with your insights you are a great Dr. wish I was closer to you.

Nick said...

I stumbled on this blog while searching for a "Lyme Doctor" in Maryalnd, but can find no contact info, how does one contact the author?

dinster said...

I am having the same problem. How do we contact you? I live in Montgomery County and need to see a Lyme doctor.