A 46 year old female came into my office today looking for help. She was referred by a friend but really didn't know much about Lyme disease. Two years ago she noticed a tick bite behind a knee. Her physician told her to watch the area: no treatment was required unless she developed a bulls eye rash. This never occurred so she received no therapy. Over the months she got sick and sicker with a variety of ailments. She developed gallbladder problems. Removal of the diseased organ did not improve things. She had constant symptoms of diarrhea, bloating and nausea. She developed headaches, vertigo and palpitations. She saw a neurologists- no help; an ENT specialist- no help; a cardiologist- no help. It was finally her gynecologist who suggested that she be tested for Lyme disease. The test was positive(I don't have the results). Her primary doctor prescribed 2 weeks of Doxycyline- should be cured: she wasn't. An infectious disease specialist prescribed "blue pills"(probably Ceftin) for 3-4 weeks with any change. She brow beat the ID specialist after doing a little research of her own, into prescribing Rocephin because she was no better. He reluctantly agreed to prescribe Rocephin for the "magic" 28 days, which was of no help. Enough he said. The ID specialist even consulted with another colleague. Both concurred: she was cured. The ID specialist said that co-infections do not exist. Even if they do- the Doxycyline and Rochephin had already killed everything. She did not have Lyme disease. Her primary physician recommended that she see more specialist at a University hospital. She does not have Lyme disease.
Her current symptoms are: severe fatigue- incapacitating, brain fog with horrible memory loss, sleep problems, headaches, neck pains, shaking, joint pains of knees shoulders and more, muscle pain, palpitations, neck pain, hot flashes and persistent vertigo. Does any of this sound familiar?
Her neurological exam revealed a treasure trove of pathology. She had cranial nerve dysfunction, sensory disturbances, weakness on one side, a positive Babinsky showing upper motor neuron disease a positive Romberg and more.
The question then became: how was a going to tell her everything I needed to tell her about Lyme disease. There is a famous parable from Jewish folklore. A non believer was reported to have asked the famous Rabbi- Rabbi Akiba, to tell him everything about being Jewish while he stood on one foot. The wise sage, as the story goes said: "Treat your fellow man as you yourself would wish to be treated; the rest is commentary, now go learn." So in essence my goal was the same. I needed to tell her everything she needed to know about Lyme disease while she stood on one foot. Unfortunately, I could not be quite as terse as the famous Rabbi.
Here is the outline of how I proceed with such a patient. First she was informed about the raging controversy. Second she was told about the 3 different morphologies of the Bb bacteria and something about its ability to persist in the host after prolonged bouts of antibiotics. The she was informed about the potential for co-infections and the fact that these opportunistic pathogens may play a role in her illness. She further instructed that mysterious co-infections exist in many patients treated for tick borne illness- which is replacing the term Lyme disease. As an aside, just last week, it was announced that a group sequencing the genone of Ixodes scapularis, the tick which carries Lyme disease, uncovered a novel strain of Rickettsia, a relative of Rocky Mountain Spotted Fever.
She was told that the treatment for Lyme and related disorders is frequently long and complex and based on trial and error. Herxheimer reactions are common and may be a good sign.
She was told about the use of laboratory tests and their role in the diagnosis and management of Lyme and tick borne disease. Here is what I order for this patient: CBC, Chem panel, TSH(thyroid test), vitamin B12 and folic acid, vitamin D- 2 forms, CD57, sed rate, CRP, Ehrlichia antibodies, Bartonella antibodies, Babesia microti and WA1 antibodies, ANA, RF, C3a, C3b and a repeat Lyme Western Blot since I do not have the results. All of these tests can be done through the patient's insurance at Labcorp. The purpose for all of these tests was, in a general sense, was explained to the patient as well. The use of specialty labs such as IgeneX and Clongen was also briefly touched on.
Because of cognitive complaints I also order a SPECT scan- she has already had a brain MRI. The reason for this was explained.
Then I explained to the patient why I would not recommend that she see further specialist at this time. I tell her that if she wishes treatment from me I require that she sign an informed consent form. I briefly touch on the politics which have made such forms mandatory.
Normally I await the results of all the tests before a begin therapy I explain to her. But I tell her I am already convinced she has chronic Lyme disease. The history fits. The physical fits. The negative brain MRI fits. The history of a positive Lyme test fits. In her particular case I am comfortable with starting treatment today.
Now I need to explain therapy options to the patient. First of all, I confess I was a little surprised that she had not benefits from the Rocephin, but on the other hand, in many cases clinical improvement is not seen for more than 8 weeks. At this point I recommend going back to oral therapy since the PIC line is no longer in place. Because we are entering the warmer months I avoid Doxycyline. I tell her that I have good success combining antibiotics. I recommend Amoxicillin 3 grams per day plus Biaxin one gram per day. I also recommend two types of probiotics: one is Acidophilus based and other is Saccromyses based. I warn her about potential side effects including: allergic reactions, diarrhea and yeast infections. I ask her to return for follow up in 4 weeks. I explain all of these things in some detail.
She then asks what to expect. Will she better or worse? How long will therapy take? If I don't know can I give an estimate? I then try to field these important and complex questions in the few minutes left in our visit.
Read I say. Become informed. See Under Our Skin. Read Cure Unknown. Visit the ILADS website. Read some of my literature- perhaps part of my blog.(The rest is
That's Lyme disease- while you stand on one foot.
I wish it were that easy.
My husband was just told he has Lyme Disease by Urgent Care. We believe he's had it almost a year. He is at the point now of memory loss, swollen joints, severe back pains, horrible sleep patterns..etc. He only went to the doctor this weekend because the size and amount of bruises he woke up with on Saturday. They took his blood and said he needed to wait for CDC to contact him. They gave him Amoxicillin. We're in MD. Do we wait or do we find a doctor? thanks
Wait to get worse, run to help him!
It is progressive and very painful. It can be handled well if treated. Do not listen to the ones that think that because he is now "chronic" he cannot get better; its a false, negligent unfair statement.
Read what the Doctor recommends to get informed and fight for his recovery!
I want to thank you for posting your thoughts and experiences with treating Lyme patients. Your blog directly helped me solve the mystery of why I had been steadily getting sicker since 1991, which contributed to a premature end to my Marine Corps career and a continuous decline in my quality of life from 1991-2008. After literally hundreds of appointments and several dozen doctors (most of them specialists) over 18 years, I went to see an ILADS Doc in Nov 08 and had a diagnosis and treatment started within 3 weeks. I am slowly improving and no longer feel like I could keel over dead at any moment.
Your blog has been a tremendous help to me personally, and I continue to read it regularly. Thank you again for taking the time to share your thoughts with the masses.
Posts like this are very gratifying. I will continue to share thoughts.
Thank you for posting the info, it is invaluable. I'm at a "what to do next" point. Three MDs have confirmed lyme from Western Blot, but Infectious Disease MD at reputable teaching hospital says it's false positive and won't consider treatment without an LP which I understand to be unreliable, and after $5k out of pocket in the last four months, I can't afford to test over and over again. My IGG was 4 bands, (they only tested for 10), and my IGM was 2 out of 3. My ANA and Rh are both elevated. I had two weeks of doxy in February. My brain is mush! I tell people my nervous system is on overdrive and my brain is in park. What do you ask when you call an MD's office to find out if they are lyme literate?
I think "wolverinemarine" is a perfect example of a person with the so called "Chronic Lyme" that IDSA consider should not have treatment for Lyme Disease; but against IDSA, if I understood correctly, wolverinemarine is recovering with the treatment received after so many years of suffering without it! IDSA say people like wolverinemarine does not need treatment because they won't recover; we all need to demonstrate it is not true!! With just three weeks of treatment and wolverinemarine feels a relief, is that fair or not???
This is like the opposite of Haven, they got a relativelly fast diagnose, but are they going to get the treatment on time? For Lyme and not for other non related illnesses? Is there some compassion out there?
I have been told I have LYME from a live blood analysis. I have terrible knee and big toe pain that "comes and goes" and is debilitating when it comes.
Marine, how did you find an ILADS doctor?
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