A 68 year old female consulted with me one year ago. She had been ill for over 4 years. At the outset she had flu like symptoms and a rash on her neck. A 2 tier Lyme WB was positive by CDC criteria. She was treated with antibiotics 4 four months by her primary care physician. The physician pronounced her cured and refused to extend the course of therapy. Her symptoms returned with a vengeance. She developed more pains, joint swelling, numbness and tingling, fatigue, and cognitive dysfunction. She had progressive memory loss. She could not focus, concentrate, process or retrieve words and thoughts. She had episodes of confusion and disorientation. She saw numerous doctors, all of whom were dismissive, if not rude. She was told her symptoms were normal for a woman her age. Then after doing her own research on the Internet she ordered an IgeneX test.
The Lyme IgM Western showed bands: 18 28, 30, 39, 41 and 58. A C6 peptide antibody was 0.86. Her CD57 was 18.
When I first saw her the physical exam showed difficulty with word search and moderate short term memory deficits. Positive findings included: bilateral weakness in the upper extremities, absent deep tendon reflexes in the knees and ankles, decreased pin-prick sensations in 4 extremities and decreased vibratory sense in the feet and lower extremities.
The brain MRI showed scattered white matter lesions-non-specific. The brain SPECT showed decreased activity in the the left anterior temporal region.
After one year of treatment she is about 90% better. Her cognitive functions are nearly normal. Her treatment included: Omnicef, Biaxin, Plaquenil, Tindamax, Zithromax, Mepron, Malarone, Artemesin, Bactrim, Amoxicillin, and Doxycyline.
This patient's story is illustrative of care given to similar patients by many LLMDs.
There is good evidence: patient's history, physical exam, laboratory test result and brain imaging all support the diagnosis of CNS Lyme/Lyme encephalopathy/neuroborreliosis etc --even to well informed IDSA physicians. The science suggests that all such patients should be considered for intravenous antibiotics, no matter which side of the fence you are on. In this case, the patient improved with only oral (extended-plus-co-infection) anti-microbials.
The IDSA view is that chronic Lyme disease does not exist. The IDSA has no argument with the existence of a post-Lyme syndrome. The authors of NIH sponsored studies have expressed empathy for such patients. Their suffering is real. The investigators and CDC claim current evidence does not support the use of long term antibiotics for such patients. It recognizes the genuine suffering of such patients and that this suffering is causally related to previous, (treated) Lyme disease. Fair enough. (I disagree).
But something strange has happened. Patients who seek the attention of ID doctors and rhematologist, even those with "CDC positive" results are treated as pariahs. Despite hard evidence, the patients are herded out of these physicians offices as quickly as possible. They are still told: you are depressed, you just need to exercise and loose weight, you have fibromyalgia, you are just imagining your symptoms, you spend too much time on the Internet, there is nothing wrong with you, I don't care what the tests say--you don't have Lyme and so on.
I went to medical school--admittedly some time ago. I thought doctors are supposed to be empathetic and kind to patients. Instead, many doctors are belittling, dismissive and bellicose.
They don't have to agree with the ILADS/LLMD approach, but for heaven's sake, they have a diagnosis to rest their hats on: post-Lyme syndrome-"a poorly characterized autoimmune syndrome."
They should at least read their own literature. These physicians should be supportive, offer a diagnosis, explain the diagnosis, its pathogenesis prognosis and therapy.(If they believe the party line?). These understanding physicians should prescribe therapies to alleviate or ameliorate the suffering of their patients. Instead, they appear to be taking out their disdain for LLMDS on their patients. Ironically, this may be a good thing because the patients keep looking until they find us. (I don't want to give "the other side" any good ideas).
And if it just were wasting time and money when we go to those dismissive Doctors; but they are compromising our health not treating on time and properly... plus not being helped when suffering such array of symptoms of course worsens anyone's condition mentally and physically.
Honestly, the most painful moments in my life were each time a Doctor dismissed me; just like this patient you mention here.. because I am woman more than forty years old...
I know, one day, IDSA would have to change their guidelines but the more they take to consider it, the more damage it is made to many. God would judge!
I can't get a doctor in my city to even look at me. My local PCP did such a poor excuse of a Physical at my routine PE and didn't want to hear ANY concerns from me...told me,"I only need to see you once a year for a CPE, bye!"
I was in very good shape when I first got sick. I also hadn't had to go to a doctor for years (except for a sinus infection or two). More than a couple of times, I would tell a doctor how bad I was feeling (long list developed over time), and they'd do a very cursory (less than 5 minute) exam (often seeming very impatient at my long story), and recommend sleeping pills, painkillers and antidepressants. No history of sleep trouble, pain or depression prior.
I was being shuffled from doctor to doctor, often waiting weeks for appointments, and I don't think anyone spent more than 12 minutes with me before sending me elsewhere (or to therapy, which I went to, by the way...I thought I was losing my mind too).
But the worst was. One doctor, my new primary (HMO reshuffling) at the time...I gave him a written page with what was happening (I was often so out of it in appointments that I wrote everything down). He told me that there was really only one thing that he could imagine and that was "Von Munchausan Syndrome". He kept talking, and... I KNEW what that was. I stopped him, and said, 'wait, are you saying I am doing this get attention?" He seemed surprised that I knew what it was, as though he could assume he was talking over my head.
He suggested therapy. No exam, not even the old listen to my heart, weight me, check reflexes. Nothing. On the advice of an uncle who is a doctor,a few weeks later I asked this PCP to give me a referral (necessary for HMO) to an immunologist. He refused. I wrote a letter of complaint to the HMO. I got a letter 3 weeks later from Blue Shield, that I had been removed from my HMO (I could choose another). I asked why, and they told me that this Dr. was part of the ownership of the HMO group and was able to request my removal from the HMO.
If I'd heard stories like I've read from others, or indeed, what I experienced myself...BEFORE this baffling illness...I would never have believed it.
PS. I mentioned that I was in good shape when I got sick. This really turned out to be a detriment. When I did get undressed/examined, and explained the bewildering things that were happening to me, more than a couple of doctors pretty much stopped right there and said "you really are in very good shape physically, you should seek therapy".
By the time I got diagnosed, I finally looked as bad as I felt (lost 25 pounds, etc, etc). It took nearly 2 years and a near complete physical breakdown before I got an answer.
Just a note to anyone who was planning on traveling to Annapolis for the Lyme Bill hearing Thursday Feb. 11th. The hearing has been postponed because of the snow. It'll be rescheduled probably in the next week or two.
I'm so thankful you are my doctor. This is one of many reasons that I continue to travel long and far for your care. You have never dismissed me, you have listened to me and of all the doctors over the last few years, you are the only one who believes and are willing to help. I am forever grateful. You gave me my life back, you gave my children their mom back.
Keep doing what you are doing because without you, many of us will continue to suffer.
I am a very thankful patient of yours as well. You have listened to me for many years dealing with this disease. I even went to an Infectious Disease dr., who within the first 5 minutes told me that it was all in my head, my dr. didn't know what he/she was talking about, and the lab tests were all made up. These test were all within the CDC guidelines for Lyme's. Keep doing what you are doing, don't think that you are not appreciated!!!!
Find you? Where are you? Who are you? I've been suffering with what I am told is, yes, "Post Lyme Syndrome" and "Fibromyalgia" since 2008. I have severe fatigue, joint pain, memory loss and though I'm 52 I feel like I'm 80! Please help me.
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