First of all, it should be clear, that my post yesterday, like many other posts, was prompted by a visit from a patient who had misconstrued published symptom lists. This patient clearly did not have Lyme disease.
The vast majority of patients who think they have chronic Lyme disease turn out to be correct in their assessments.
I would like to clarify yesterday's post. The TYPICAL patient I see complains of: fatigue, usually severe, pains which come and go of muscles, joints, tendons or ligaments, sensations of numbness and tingling and cognitive dysfunction. I believe that Dr. B's guidelines do a fabulous job covering the most common neuro-cognitive complaints typically seen in chronic Lyme patients. A history of tick bite and rash is important, but not as common as one might think. Established Lyme disease is a multi-system disease. Patients have a plethora of symptoms involving nearly every organ system. The take home point is that Lyme related symptoms occur within a cluster. Patients lacking the core symptoms described above are unlikely to be suffering with clinically significant Lyme disease, based on my clinical experience. The patient that prompted the post had: no fatigue, no cognitive dysfunction and no neurological dysfunction. He had knee pain after running, as well as various short lived symptoms which he found trolling the internet. Chronic Lyme patients are quite ill and have a multi-system illness. Admittedly, may chronic Lyme patients look quite healthy at first blush, but they are in fact quite ill- and this should not be trivialized. Although I think that over diagnosis of Lyme disease is rare, at least in my practice, the potential for this exists. It is clear that the IDSA believes that Lyme disease is grossly over diagnosed by LLMDS; sometimes I write with the specific intent of taking bullets out of their guns.
Neurological symptoms associated with Lyme disease are all over the map. They do include tremors, fasciculations, weakness, myoclonus, Parkinsonian features, MS features, ALS features, vertigo, dizziness, alterations in hearing- vision- sense of smell or taste, neurologically mediated stiffness, sleep disorders including sleep apnea, loss of balance, all manner of speech disturbances and psychiatric disorders as listed elsewhere, stiff neck of the meningitis variety, neurologically mediated changes in bowel and bladder function, pinched nerve syndromes, neurologically mediated pain syndromes of all sorts, trouble swallowing mediated by changes in the brain, stroke like symptoms, a wide variety of neuropathic symptoms not listed here, changes in heat and cold perception, HEADACHES, exacerbations of preexisting migraine or tension headache, ADD syndromes, personality changes, neuromuscular syndromes causing muscle atrophy and weakness--AND these are just a few of the symptoms that come to mind as I sit at my desk on my lunch break. My point is that any one symptoms can be taken out of context. There is a gestalt in diagnosing Lyme disease. Patients have multiple and varied symptoms which come together a whole.
Perhaps sometimes I write Blogs to encourage my readers to think- and to some extent, I am sharing my thoughts, as I think out loud. I hope that readers will understand my comment in this light.
Neck pain is extremely common in Lyme patients. AND it does suggest co-infection with Babesia. I have a general medical practice. One half the patients I see do not have Lyme disease. The vast majority of patients who complain of neck pain as their chief complaint do not have Lyme disease. Please understand this distinction.
If all horses are brown and you are brown it doesn't make you a horse.
This sound silly, but I think it was this sort of logic that brought the above described patients to my office for a consultation.
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On the other hand, people with Lyme disease who do not have multiple and varied symptoms or the "classic" early symptoms are almost never properly diagnosed. Take me, for example. I've suffered from progressively worsening, remitting and relapsing depression since the age of 15. I'm now 43. As a teenager, I lived in the Virgina suburbs of DC, and was frequently in the woods and tall grasses. I don't recall a tick bite. I have no physical symptoms of Lyme disease whatsoever. In fact, I run ten miles every day to help keep the depresion at bay. In the past ten years, the depression has become more and more severe, and the episodes have become longer. I've been on dozens of medications, have tried shock therapy unscuccessfully, etc., etc. I've been treated long-term by five psychiatrists, and have sought second opinions from at least 15 others - almost all of them in the DC area.
I'm now living on the West Coast. I was diagnosed with Lyme disease one year ago. I had no idea that my GP was an LLMD. I knew nothing whatsoever about Lyme disease. I just happened to pick up a copy of the Children's Treatment issue of Lyme Times magazine off his reading rack while waiting for a routine appointment. I thought it probably wasn't relevant to my five year old's autistic spectrum disorder, but decided to glance at it anyway. I quickly recognized many of my son's symptoms, so we had him and my wife tested, as she was diagnosed with MS. Their IGeneX results were positive. Then we had me tested. The results: negative by IgG western blot, but positive on IgM bands 18 (for what it's worth), 23/25, 31, 34, and 41, and IND on bands 39 and 83/93. My CD57+ count was 32. Recent SPECT revealed scattered hypoperfusion throughout all four lobes of the cerebral cortex.
If it wasn't for pure luck, I would never have been diagnosed properly. I don't think there's a good basis for saying that my profile is uncommon. We just have no idea how many other people like me are out there. Perhaps certain physical symptoms tend to present in clusters, whereas neuro-psychiatric symptoms often appear alone or in combination with physical symptoms. I don't think we have enough information at this point to reach any conclusions.
I think that if you read through my posts you will get a better sense of my experience treating a wide number of patients. I have found that many chronic LD patients have been mis-diagnosed with MS. I have pointed out the the MS syndrome that I learned about in medical school has morphed into another syndrome which sound a lot more like chronic Lyme disease. Lyme/MS patients have brain fog, fatigue, pain syndromes, peripheral neuropathy and other atypical signs and symptoms.
There may be a silent epidemic of congenital LD. Much research has connected neuro-Lyme with autism spectrum disorders. This an area I do not currently treat.
As I noted, Lyme has been associated with every known psychiatric disorder. This certainly includes mood disorders including depression. In my experience, there are usually other tip offs. When the neurological exam is carefully performed abnormalities are generally found. These include: subtle cranial nerves disorders, peripheral neuropathies as demonstrated by stocking/glove diminished sensation to pin prick in the distal extremities and decreased vibratory sense in the lower extremities. Patient frequently have abnormal reflexes, such as a Hoffman or Wartenberg response. In a family with a cluster of LD, and exposure to an endemic area, the suspicion for Lyme disease is increased. When patients respond poorly to typical antidepressant medications this may also be a clue. Patients with "Lyme brain" are frequently hypersensitive to the neurotransmitter serotonin and may have a paradoxical reaction to typical antidepressants with are selective serotonic reuptake inhibitors such as Prozac and Lexapro. (These drugs can exacerbate depression). Most patients do have other symptoms if you look hard enough.
Certainly patients with specific neurological disorders such as ALS have been shown to suffer with Lyme and tick borne illness.
Lyme disease is a great imitator.
In writing this Blog I have tried to be balanced and conservative.
Their is a lot of information on the internet which seems to be on the other end of this spectrum.
These recent Blogs were meant to address that which is common. Atypical presentations of chronic Lyme disease do exist, but they are less common. LLMDS are also general physicians. Many symptoms that sound like Lyme can also be related to other, serious and at times life threatening disorders.
Physicians are obligated to rule out these other diagnoses as the evaluate patients who may suffer with chronic LD and TBD.
Thanks so much for the detailed response. I should have prefaced my posting by saying how much I appreciate your blog, which I recently discovered. We patients are very lucky that such a knowledgeable doctor is willing to take the time to share his insights with us. I also should have made it clear that I wasn't trying to imply that your position on overdiagnosis is too conservative. My point really just amounts to this: we don't know whether an "atypical" presentation is truly atypical if people with that presentation are almost never properly diagnosed with Lyme disease.
I do suspect that benign seropositivity can occur (perhaps fairly frequently occurs)- so there is a risk that someone attributes their symptoms to Lyme when in fact the seropositivity is co-incidental.
Worth a treatment trial to explore if their symptoms are responsive to antibiotics, but hard to know when to stop.
A symptom list needs an algorithm to weight the typical features - and to weight any hard signs. Also need to highlight the need to explore alternative explanations.
I like your questioning approach.
Thanks, Blackbird.
I'm assuming benign seropositivty isn't at play in my case, for the following reasons:
(1) My brain SPECT revealed scattered hypoperfusion thoughout the entire cerebral cortex, consistent with Lyme disease or vasculitis.
(2) My symptoms came on rapidly and dramatically at the age of 15, with no obvious cause. I had no history of depression.
(3) The presence of bands 31 & 34 indicates later-stage infection, consistent with my long symptom history.
(4) The positive IgM results indicate active infection.
(5) Soon after startig IV Rocephin, I experienced a sudden increase in depression, accompanied by a very loud ringing in my ears and flu-like symptoms, lasting about a week (i.e., herxing). The same thing happened with IV Zithro.
(6) This one isn't hard evidence - but I'm throwing it in because it's interesting. My symptoms abated for about 18 months after I had a vagus nerve stimulator implanted for treatment-resistant depression. I get the impression from my limited research that the vagus nerve plays an important in mediating cytokine response in the brain. This would suggest that cytokine-related inflammation plays an important role in my depression.
The whole picture seems to suggest pretty strongly that Lyme disease and/or coinfections are the culprits.
I know benign seropositivity is a theoretical possibility. I'm not aware of any evidence that it's widespread in Lyme disease. I'm sure the IDSA people would do everything possible to blow any such evidence out of proportion. Of course, people without symptoms don't get tested. And given the persistent nature of later-stage Lyme disease, it's almost impossible to say with confidence that a treatment failure indicates benign seropositivity.
Is there anything in particular that makes you suspect benign seropositivity might be a significant issue? Is it known to occur with related infections, such as Treponema pallidum?
Thanks again for the feedback!
Anthony
I should have also mentioned under #3 that I was living in the Virginia suburbs of DC when my symptoms appeared. I spent a lot of time in the woods and tall grasses. Plenty of exposure to deer ticks...
Hello Anthony,
Sorry that you are having to deal with depression - it is a horrible thing to deal with.
I will not attempt to comment on your case, but about "benign seropositivity" this was published in 2008.
No association of seropositivity for anti-Borrelia IgG antibody with mental and physical complaints
Authors: Hans Joergen Grabe a; Published in: Nordic Journal of Psychiatry, Volume 62, Issue 5 2008 , pages 386 - 391
Abstract is at:
http://tinyurl.com/ct4rb7
It would be interesting to know if they explored evidence of ongoing infection i.e. is there subclinical chronic infection that is benign long term? There was no increase in ill health noted in this research.
If there is chronic subclinical infection then a Herx-type reaction could occur with antibiotic treatment, but perhaps the patient would not be markedly different before or afterwards as the borrelia infection was incidental i.e. it was not the cause of their symptoms.
Also it would be interesting to know if they looked at IgM at all.
Thanks, Blackbird. It has been very difficult. My last prolonged episode lasted for three years (2003 to 2006). That's when I had ECT and was accepted into a clinical trial for deep brain stimulation for treatment-resistant depression (though I opted for vagus nerve stimulation instead). I just try to remind myself that I'm lucky I was finally diagnosed.
Based just on the abstract, it looks like they didn't consider IgM response. I'd be very surprised if a study like this turned up the same kinds of results for IgM seropositive subjects.
I'd assume that treating subclinical infection wouldn't result in herxing -- especially not the kind of intense herxing I experienced -- since the bacterial lode in subclinical infection is probably comparatively low. But who knows...
The study does raise a legitimate concern. IgG seropositivity is only one piece of limited evidence for what is really a differential, clinical diagnosis. Whether or how long to treat is a judgment call that's not always easy to make. But as LymeMD pointed out in this posting, some clusters of symptoms are particularly suggestive of Lyme disease. I wonder what percentage of the subjects in this study really fit the profile that LymeMD or other knowledgeable LLMDs would identify as strongly suggesting Lyme disease.
I'm always a bit cautious about his type of study. The IDSA types have designed some true garbage studies in the past -- published in journals like NEJM -- to try to justify some of their ridiculous positions. I'm not saying this study falls in that category, but I'm pretty wary.
Let me begin that your blog gives me hope. Hope that other MD's will "like the grey area of medicine" and not be so close minded to this disease. I am a faithful reader and have learned so much from what you have written about and I appreciate how open you are.
I am diagnosed with Lyme and was not aware I had lyme and gave birth to a son 9 months ago. I got "sick" 6 weeks postpartum. I suspected lyme shortly after but did not receive the diagnosis until recently. Ironically, I could not remember any bites, until Friday when I remember it happening in September 2007, with the symptoms hitting me in July 2008.
Anyways, I am on a quest to discover what I can about congenital lyme. I am highly concerned. Although you don't know much about it, is there anywhere you can point me so I can learn more. I don't know if I should get him tested, start him on antibotics, etc. I am just lost and right now riddled with guilt. He's just a baby, and this is not fair to him.
From the bottom of my heart, I appreciate anything you can share.
Hi Rami,
You should get a copy of the Children's Treatment issue of Lyme Times.(available at http://www.lymedisease.org/).
I believe antibody testing of infants is unreliable at least until 18 months of age, since they don't have well-developed immune systems. Positive test results prior to 18 months would indicate antibodies that you've passed on to your child. I believe that even after that age, the testing might detect your passed-on antibodies if you had been breast feeding recently.
PCR testing might be an option, but it is not very sensitive. I believe the IGeneX urine PCR results in a false negative about 70% of the time. It's also more expensive than antibody testing.
I don't mean to overemphasize testing. It's only one piece of the puzzle. A doctor can't diagnose or rule out Lyme disease on the basis of tests alone.
Caveat: I'm not a doctor.
Anthony
Thanks for sharing so much information! It's a frustrating road!
www.lymeandback.blogspot.com
Hi I'm really hoping you can help me! 10 years ago I got a target rash on my leg, I saw doctor after doctor and became increasingly ill. After 3 months finally they came to the conclusion of Lymes and I was given 4 week anti bitotics. Since then I have random flare ups of feeling awful! How I feel can vary, I'm usually VERY tired, il get pains in my hips a lot sometimes down into my knee, I get strange facial rashes, sun rash, chest pains, stiff neck, and recently my husband said ive been convulsing in my sleep a lot (ive done this for several yrs but its increased) & my memory terrible. Ive seen so many doctors at this stage and I'm at my wits end. Drs always brush off the idea of Lymes, how can I get treatment for something I'm told I don't have?!How do I live with this?
Go to the ILADS website. At the top left hand corner, click on it and go to patient services. Youll have to sign up. There you give them your email and how far youre willing to travel. They will send you a list of doctors who treat lyme.
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