Let me say at the outset: this entry is primarily defensive. But I also think it is necessary that my readers understand that I not just a "Lyme MD." Unlike a specialist,(Lyme medicine is not a speciality) I was trained as a generalist. For me that has meant that I have the ability to look at the whole person: all the various systems in the body and their inter-relations. I recently spoke with an opthomologist who jokingly said: "I only specialize on cataract surgery of the left eye." As a generalists, I view my patients through a broader, more integrative model. I think this also creates an open mind set, more adaptive to paradigm changes such as those created with new ways of thinking about Lyme disease. It is interesting to note that LLMDs from the most part come from primary care disciplines, family medicine and internal medicine. Physicians who have specialized, infectious disease and rheumatology are much less open minded. I suspect it is their DNA- so to speak.
Every symptom seen in chronic Lyme patients can also be seen in a wide array of other medical syndromes. It is when multi-system symptoms converge in a single individual that Lyme becomes the primary suspect. Brain fog and memory loss are perhaps one of the most common symptoms seen in chronic Lyme patients. One should always consider that it is not always the case that Lyme is the imitator; sometimes the table is turned- it is another illness which is masquerading as Lyme.
In what follows, I will provide a brief over view of some of the causes of brain fog and cognitve changes in patients which are not due to Lyme disease.
Cognitive deficits are frequently seen with alcohol and substance abuse. A chronic, late stage alcoholic may have a dementia called Korsakofs syndrome, associated with "confabulation." Psychiatric disorders including: depression, anxiety, bipolar disorder and attention deficit disorder may cause the same symptoms. These symptoms can be caused by sleep apnea- which is extremely common- both central and obstructive. Other sleep disorders may include restless leg syndrome and narcolepsy. Non-Lyme autoimmune causes may include: gluten sensitivity, lupus(cerebritis),vasculiltis, MS and others.
Non-Lyme neurodegenerative causes may include: early onset Alzheimer's disease, Parkinson's disease with Lewy body dementia, fronto-temporal dementia and others. Prions, mutated proteins may cause severe cognitive problems, the best known example is mad cow disease(BSE). Brain tumors- either primary or metastatic need to be considered. Neurological disease can also be the result of "paraneoplastic" syndromes. For example, a patient might have lung cancer and the cancer might provoke the development of peculiar auto-antibodies such as anti-Hu or anti-Ro, which cause inflammation of brain tissue. Other infections need to be considered. These include: syphilis, chronic fungal meningitis, viral encephalitis such as Herpes and many others, brain abscess with a variety of microbes including parasites.
Injury needs to be considered. Patients may have a slow bleed around the brain- a subdural hematoma. Patients may have a post-concussion syndrome. The injury may be psycho-physiologic as in PTSD. Low grade atypical seizures can cause these symptoms and need to be considered. Metabolic causes of change in mental status are always a concern. Patients can have fluctuations in blood sugar. My first medicine patient when I was a 3rd year medical student had an insulinoma, an unusual tumor of the pancreas which would secrete insulin at unexpected times. The low blood sugars would have significant brain/cognitive effects. This syndrome(hypoglycemia) is more likely in diabetics, especially those on insulin and certain oral medicines. Vitamin B12 deficiency is a notorious cause of mental status changes as is hypothyroidism.
Systemic infections, especially in the elderly, like pneumonia or a urinary tract infection can cause significant changes in mentation. Low oxygen levels seen in patients with chronic lung disease, congestive heart failure, blood clots to the lungs and others disorders can cause dramatic mental status change. Toxic exposure to a wide range of brain toxins can precipitate cognitive changes. Belladonna like drugs- anti-cholinergics, are a good example. Heavy metals like lead and mercury are very toxic to the central nervous system. Multiple medications from a wide range of classes as well as toxic drug interactions can cause these problems.
Many patients with changes in mental status suffer with the most common disease in America, atherosclerosis. Both clogged arteries and high blood pressure can cause tiny strokes in multiple regions of the brain ultimately leading to memory changes.
This syndrome is much more common in diabetics.
Genetic factors have been identified which are associated with various forms of dementia and neurodegenerative disorders. This of course includes Alheimer's disease.
Perhaps there is a phenomenon of mild forgetfulness associated with aging. I was taught this in medical training. Perhaps it is because I am of that certain age that I am dubious of this explanation unless all other causes have been ruled out.
There is evidence that persons with active minds, those who are engaged in work, problem solving or do puzzles, may preserve cognitive abilities.
This list is not meant to be exhaustive but illustrative. Lyme docs have been criticized as being hammers who see everything as nails-(Lyme).
Those of us who treat Lyme spent many years learning general medicine before we ever became involved in Lyme diagnosis and treatment. We have not abandoned that foundation of knowledge.
I have written this piece, like most of my others, off the top of my head, so please excuse any spelling errors.
A similar list could be constructed for every other symptoms commonly seen in Lyme patients,including: fatigue, muscle pain, joint pain, numbness and tingling, sweats- fevers and chills, headache, dizziness and many more. I would be happy to do this if there is an interest.
I am a family doctor. I see a wide range of patients in my office everyday with a multitude of medical diagnoses. I do not diagnose everyone with Lyme disease as some have suggested. However, I do believe that the Lyme pandemic/epidemic is real. I do find many patients with symptoms, signs and ancillary diagnostic tests which point in that direction.
When I was a medical intern, almost 30 years ago, at DC General Hospital, I remember something a very bright senior medical resident once said. "Every time I get an interesting, exciting case- it always turns out to be tainted by alcoholism."
I will admit, to some extent, that statement reflects my current view of Lyme disease. Nonetheless, my first priority is to practice solid, standard medicine and then put the pieces of the puzzle together to the best of my abilities.
10 comments:
"A similar list could be constructed for every other symptoms commonly seen in Lyme patients,including: fatigue, muscle pain, joint pain, numbness and tingling, sweats- fevers and chills, headache, dizziness and many more. I would be happy to do this if there is an interest."
I would be very interested in this list. Thank you.
Well I feel a little sad that you feel compelled to defend yourself, obviously not to readers but to colleagues and perhaps potentially OPMC or something.
Because you treat lyme aggressively, more lyme patients are coming your way, and because you live and work in a highly endemic area, some of your primary care patients turn out to have undiagnosed lyme. You are inadvertantly gaining a subspecialty that has no name, ie infectious disease expert with a particular focus on tickborne illness. There should be such a specialty but that is a long ways off.
Anyway as I said before lyme is such a bad name, because it's kind of unique that one vector carries so many distinct pathogens, all mixing together along with variable genetics to create these unnervingly different disease pictures. What a mess.
a señor con el amor
I really don't understand the analogy in the last paragraph but this blog entry sure sounds like something has you down. As patients I know we are not easy but this is not intentional as the disease has robbed us of ourselves and we are trying to find out who we are now. I am the same but very different. We have been badly brused by the "establishment"
Then we find you. Someone who doesn't turn us away but we bring all this on you and you feel that you must shoulder it all. There is so much unknown about this disease but I see you trying to understand it, determined to and confident that you can knowing you have the ability to. I am confident that you can. Then your peers turn on you. I can just hear it "Throw then in the wastebasket"; Its not a real disease; What has happened to LymeMD? Should his mental health be checked? He thinks everyone has Chronic Lymes Disease" Its too overwhelming for anyone. I don't know how you have survived this long.
As a patient I, for one, will burden you less. I'm a survivor so don't ever think I cannot get through this. I can and will I just need a little help.
You are doing so much good. Everything I hear "on the lyme line" regarding your work is good, very good. Focus on the good, on the success if you can.
I really appreciate your unbiased approach. I am being treated by a LLD who has immediately diagnosed me with lyme based on my symptoms. I feel that this approach has had it's positives and negatives. I was fairly ill and the antibiotics did help me tremendously but, after a year on them, it seemed like the side-effects of the antibiotics were contributing to symptoms. I am now off of antibiotics and actually feel a bit better although the irritability, facial and eye pain and burning and numbness in my feet are all very prominent. I went back to my primary doc and asked for more of a differential diagnosis. I will now be seeing an MS specialist. I also recently had a thyroglossal duct cyst removed. I now think I need to see a thyroid specialist. (My LLD has had me on armour thyroid, progesterone and estradiol for the last two years before there was any hint of the cyst.)I do not meet the CDC criteria for lyme although I do have a couple of positive bands that are very indicative of lyme.
I have recently come upon your blog and find it to be one of the most useful tools for understanding the uncertainties of lyme. I feel that docs either go in one direction or the other, ignoring lyme as a possiblity or jumping quickly to a lyme diagnosis. This leaves the patient (with sometimes impaired cognitive abilities :) ) to figure out how to proceed.
Thanks for all you do here. You are truely the kind of doc that any patient would like to see; you appear to have a reasoned and careful approach. Can we clone you?
It appears that differntial diagnosis is part and parcel of every case that you talk about. I would love to read even more about how you go about this. Those of us with lyme must advocate for ourselves in talking to our doctors about what we might need. This is unfortunate. Right now I would love to have someone else take charge..........
It is difficult for LLMDs to work with other specialists. The other specialist typically have nothing but contempt for the Lyme docs. Working with a neurologist or endocrinologist becomes difficult.
There is no collaboration. LLMDs are always searching for specialists who are Lyme literate- they are in short supply. This is the quandary and it may explain why LLMDs are more comfortable assuming the totality of the patient's care.
"....it may explain why LLMDs are more comfortable assuming the totality of the patient's care."
Maybe it is more a matter of being forced to take on the whole package because of the failure of the specialists to understand and help with this very complex disease picture. Sure wish the lyme docs could get some help, as they need to be relieved of some of the burden.
I think there are a few open minded and progressive specialists but they are probably marginalized in a world of cookbook medicine and insurance driven care.
Quite interested in the alcohol paradigm reference.
I am a European, living in America.
As a trained anthropologist, I find these references to alcohol consumption & illnesses, and "alcohol abuse" to be quite mutable cultural categories. As a Medical anthropologist I always question paradigms of "sickness" culture to culture.
Suffice to say that what constitutes 'alcohol abuse' in suburban USA...is quite a distance from alcohol abuse in Dubai or Nigeria, or Barcelona... this is a particular interest of mine.
Personal, non-professional impressions are that the USA model of alcohol abuse is much specific to cultural preferences in this geographical area. And as it is a large area it is an important one - but also HIGHLY Specific. Meaning: to stereotype for convenience sake: USA alcohol community equals large groups of people who either DRINK at home, in front of large tv screens long into the night. AND?OR large groups of workers with long commutes who drink on trains and in Train station bars.
Now Contrast this to one of my "research fields" Spain: Where it is common for a percentage of the population to drink a bit throughout the day -AND USUALLY WHILE EATING FOOD -- a glass of wine at ten a.m is not unusual in this context... and another glass of wine and a bit of cognac in the afternoon coffee, and a Cocktail at lunch and so on... well how much alcohol is consumed over a period of twelve waking hours?
Are these people alcoholics?
It is such a complex issue. I beg that people thinking on the subject think beyond their own cultural values.
Dr. Lyme, where are you?
We are experiencing this now with a family member (not me); is it lyme mimicking something else or vice versa?
Dr. thinks "head injury" but cat scan is negative.
Meanwhile, ELISA is 118, flagged high, as is one part of the WB, but the other part of the WB is equivocal. Doc says you "had" lyme, you don't "have" lyme. However, there never was a prior diagnosis nor treatment of lyme whenever it was "had" prior. To us, this is all recent.
Doxy was started after the positive ELISA. With the "equivocal" WB on one side and positive on the other, the Doxy was stopped (but had been 200 mgs daily for 5 weeks).
We think "late" or "chronic" infection, not past or resolved infection.
Doc still thinks head injury and pretty much said he believes it to be alcohol related, as in "did you get into a drunken brawl and take a shot to the head or fall down" which NEVER happened.
What are we to do?
Unreliable lyme tests state positive and equivocal, brain scan says no head injury.
Do the math.
We afraid the symptoms will come back with a rage and are taking a "wait and see" attitude and hoping for the best, and that is a scary position to be in.
All I can do is speak to my experience. I was diagnosed with Lyme disease in 2006, I was a healthy 36 year old, I am a serviceman who does hard heavy work, I ran my own business, did my own books, taxes, had a better than average memory, sharp was how people described me. Leading up to my diagnosis, I had some strange symptoms, first my kneecaps began to hurt when going down stairs with any weight,with my job I had to carry 100 lb machines down the stairs and never had a problem. It got so I had to go backwards down the stairs with a laundry basket, picking up and putting down the basket with each step down. If i had to describe the pain it was like someone prying my kneecaps off with a screwdriver. As for the memory symptoms, first i noticed little things, forgetting what day it was,date or day of the week. Forgetting peoples names, command of my vocabulary, getting stuck in a conversation, or losing my train of thought. But then i would glance down at an address written on a sticky note, see the address of a house i was going to which was right up the road and i would drive by the house thinking, what was that number,,, i would look at the house number again, and turn around,,,and drive by again....even with all of that i dismissed it myself,,, maybe i was stressed out,,, tired ect. The big thing was when one day as i wrote out checks to pay bills, as i subtracted the payments , i would think in my head ok 7 minus 5 is 2 and in the split second it took to write the number down it would evaporate from my head and i would have to start over, saying it out loud as if that would help, all it did was make me realize there was something really wrong. the first test was negative, the second test was a better test i was told, and i was positive in 1 out of three bands , which i guess there are three sets of numbers in these bands they test, at this point my doctor wanted to put me on a course of antibiotics to see if i got better. I didn't get better , but i also had violent reactions, worst was sharp headache pain like a needle jabbing into the inside of my brain, which i never had a headache like that before , i was then retested, twice and both tests i came out positive in all three bands. So , then i was a confirmed case of Lyme disease. Keeping of the topic of memory loss , brain fog, i was treated for 5 months, with three different antibiotics per month. I learned that most antibiotics dont get into your brain as there is a membrane that covers and protects it, so you need to be on anti biotics that cross the "blood brain barrier" also lyme disease can go into a shell state, and there are antibiotics that open them up and kill them in "shell state" I also did research and discovered there are doctors who don't believe in this approach to treatment, and think that a couple weeks or a month on amoxicillin is all you need, to that i say BS. After my treatment, my knee pain faded, my memory came back, my energy came back, my neck wasn't locked in one position anymore. After five months of treatment, my bloodwork showed no sign of infection in any of the three "bands". My doctor has since retired , which worries me now as its 9 years later and i think it's starting to come back. I have been having some memory problems and the knee and neck pain is coming on again. I am afraid that my current doctor won't be as aggressive in treating my lyme as the old doc, partly because most doctors don't think outside of the box, partly because of government controlled healthcare, but mostly fear of being labeled a quack, or lyme seeker. I am from CT , Lyme central, I have seen lots of ticks, never deer ticks though, and i never had a bullseye rash. I am prepared to go outside the country if i have to for treatment. i still have my medical records , and can let them use them as a guide. I believe the government downplays lyme disease, and it is most likely some biological experiment gone wrong, perhaps from plum island , as some suggest. I guess we will never know.
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