Lyme symptoms: Smell the coffee- before it is too late

A 43 year old female came in to see me within the last several weeks. She is extremely ill. She became ill about 18 months ago. It started with joint pains and cognitive deficits including confusion. She was initially found to have Lyme and Ehrlichia. She was treated with 30 days of Rocephin followed by two months of Doxycyline (Klempner protocol). She was just starting to improve when the treatment was stopped. All of the initial symptoms and more returned. With further testing she showed antibodies to Bartonella. She was treated with Bicillin and Levaquin. The Bicillin, once weekly was continued for 3 months and the Levaquin given for 3 weeks. Treatment was stopped. Again, she was improving some when therapy was stopped. More symptoms came and she kept getting worse. She has two daughters who also developed Lyme disease from the same field trip. She reports that between the three of them they have seen 40 doctors prior to seeing me.

She works for cardiologists. She developed severe hypertension with wild uncontrolled swings in blood pressure. The heart specialists were at a loss.

She has seen numerous infectious disease specialists, neurologists and others. Mostly she was told that she did not have Lyme or tick borne disease. One told her he didn't know how to treat Bartonella. She told me that it appeared that all the physicians were reading off the same script!

Here are a few test results: Lyme IgM positive (CDC-old criteria), Ehrlichia IgG titer 1:1024, Bartonella henselae IgG 1:320.

Several doctors told her the infections were cured because she had IgG titers, not IgM (Ehrilichi and Bartonella).

This lady is very sick. She has profound fatigue, confusion and pain. She has a boat load of other neurological symptoms. I should report that many psychiatric symptoms became much worse with recent re-treatment with Rocephin and Doxycyline.

She presented with a highly abnormal neurological exam. She had diffuse myoclonus- muscle twitching, absent vibratory sensations of the extremities, poor finger to nose testing and a positive Romberg sign.

She has the core constellation of symptoms and findings upon which I base my diagnosis of chronic, systemic LD and neuroborreliosis. With this in mind, I will list the entirety of her current symptoms:

joint pain
random sharp shooting pains
Pain soles of feet
tremors
blood pressure dysregulated
tachycardia
Random muscle twitches
off balance
ringing in ears
sensitivity to sound and light
sweating
confusion
global cognitive problems- too numerous to list
"intestines slow"
increased headaches
sleep disorders
menstrual irregularities: no periods for years, start with antibiotics
psychosis- started after antibiotics were given- visual and auditory hallucinations

Lyme symptoms reflect a multisystem infection and are extremely varied-

For those who misinterpreted my post about Lyme symptoms I wish to clarify: Patients with Lyme disease may and do have all the symptoms listed by Dr. B in his guidelines. This patient even has the psychosis which I largely dismissed. I have seen all of these symptoms and many more in my Lyme patients.

My concern is that symptom check lists used in self diagnosis should not be displayed on the internet, especially when connected to ILADS. All patient varied symptoms need to be seen within a context of the whole clinical picture. Patients may have many isolated symptoms on the check list, which may occur over a period of time. Only a trained physician can decide if these symptoms fit into the overall clinical pattern of Lyme and tick borne illness.

The IDSA is writing letters and giving lectures claiming that self proclaimed LLMDS are essentially quacks and that symptoms attributed to chronic Lyme are vague and non specific. The IDSA claims such symptoms lists have many other causes- not Lyme disease. They are also making the strange claim that antibiotics just make people feel good for some unknown reason.

I spoke with a University scientist yesterday. His lab does research on Lyme. The IDSA got there before we did. He just heard a lecture which specifically debunked the notion that chronic Lyme disease exists. These guys are busy launching a full frontal propaganda war. We (the Lyme community) are busy quibbling about minutia while the walls are falling down around us.

THE TAKE HOME MESSAGE WAS SUPPOSED TO BE: LYME SYMPTOMS ARE IN FACT VERY,VERY SPECIFIC. THE FOCUS IN THIS WAR, WHICH I BELIEVE WE ARE CLEARLY LOOSING, IS TO LIMIT THE DISCUSSION TO THINGS WHICH ARE STRAIGHTFORWARD AND CAN BE READILY DEMONSTRATED.

Lyme patients have: 1) core symptoms which are reproducible in a large population
2) abnormal neurological examinations which are reproducible in a large population
3) abnormal laboratory parameters which are reproducible in a large population and
4) clinical responses to treatment which are reproducible in large populations.

Credible, science oriented physicians, need to go on the lecture circuit and present the other side of the story to these large groups of clinicians and scientists.

We have to win over the hearts and minds of these folks if were are to have any politic success with the legislators.

I unfortunately cannot do this until specific "political" issues which relate to my own situation are resolved.