Thursday, March 12, 2009

Lyme disease symptoms, or not?

A young man came into my office with a hodgepodge of odd symptoms. He wanted to know if he had chronic Lyme disease. In fact, there was nothing to suggest this diagnosis.
His presentation was consistent with what we used to call "the worried well."

Please note that what follows are my opinions. This is my Blog after all.
I have the utmost respect for the accomplishments of Dr. Burrascano. Nonetheless, I have concerns about some Lyme disease symptoms included in his guidelines.

The ILADS guidelines are quite circumspect and are the product of a committee of interested physicians and scientist. I feel that these guidelines are excellent. The ILADS web page links to Dr. Burrascano's guidelines. Dr. B's guidelines represent his opinions only, but I am not sure that this is made clear to the public.

Here is my concern: Medical Boards, the IDSA and members of the lay public read these guidelines. I am concerned that such entities may interpret small parts of the guidelines in ways which could have a deleterious effect.

A large menu of expanded symptoms is said to be associated with Lyme disease. A point system based on the presence of symptoms is suggested. While I agree that many listed symptoms suggest Lyme disease in its various manifestations, there are many symptoms on the list which I find questionable. I address these below. Again, let me make this clear. I think that the majority of Dr. B's symptoms are right on target. I am only addressing the small number of symptoms on the list which concern me.

Dental Pain: There are numerous reasons for this, I personally do not believe it correlates with Lyme disease. It certainly lacks specificity.

Neck stiffness: This is a common symptom. It is usually due to muscle spasms, cervical arthritis and other common orthopedic disorders. It is thought by many to be a symptom of Babesiosis. However, by itself, it lacks specificity for Lyme and related disorders. I am here not discussing neck pain in the context of pain/complex disorders including fibromyalgia. I am only discussing it as an isolated symptom.

Weight loss or weight gain: Well, which one is it? Appetite and weight changes are commonly seen. I again feel this symptoms is very non-specific.

Irregular menses: Their are numerous reasons for this. Dysfunctional uterine bleeding can be benign but it can also be linked to serious disorders like cervical cancer. This is not a typical symptom of Lyme disease. I understand that abnormal bleeding can be seen in the context of endocrine dysfunction related to Lyme disease. In and of itself this symptom is not specific for Lyme disease.

Bladder dysfunction: This is common and has many causes. Certainly it can be seen in patients with systemic Lyme disease, but it lacks specificity. I do see many patients with bladder issues but I would be hesitant to include this with a list of common Lyme symptoms.

Erectile dysfunction and loss of libido: These are common complaints. When I hear them from my patients I do not think of Lyme. There are many other causes.

Nausea and Heart burn: H. pylori is common. Lyme is fairly far down on the list of possible diagnoses. Patients may have ulcers, Barretts disease or even cancer. I have now seen evidence of Lyme infection of the stomach, as I recently reported. It has not been my experience that this is a common symptom in patients with Lyme disease.

Constipation and Diarrhea: This is a common complaint. It is usually associated with irritable bowel syndrome. It may be associated with celiac disease or even occasionally colorectal cancer. Lyme colitis is probably relatively common. Nonetheless, I would be hesitant to list this symptom.

Heart murmur and valve prolapse: Lyme typically causes arrhythmia, heart block and pericarditis. I have not seen it cause the mentioned syndromes/symptoms.

Head congestion, cough, sore throat: These are common complaints and usually due to upper respiratory infection, GERD or asthma. Air hunger may be seen in Babesia infection. Lyme may cause pleurisy. These symptoms seem to lack specificity for Lyme disease.

Hair loss: Male pattern balding is normal. Hypothyroidism may be considered. Not specific for Lyme disease. Alopecia areata is an autoimmune disease. It may be associated with Lyme disease. This symptom is non-specific.

Swollen glands: This is non-specific. I have seen Lyme present with this finding. Certainly it may be associated with Bartonella. Doctors must first exclude serious disorders like malignancy. It is a fairly non-specific symptom.

Back pain: This is generally due to a variety of common orthopedic disorders. Lyme is typically associated with large and small joint pain. It is rarely associated with back pain unless the sacroiliac joints are inflamed. Non-specific.

Headaches: Non-specific. Most common causes are migraines and tension headache. Headaches are commonly seen in patients with Lyme disease. However, the vast majority of patients with headaches do not have Lyme disease. This is a non-specific symptom.

Seizures and psychosis: Lyme is unlikely. Doctors must exclude brain tumors. Recently we have heard about Lyme rage and associated psychotic behavior. More frequently Lyme is associated with anxiety, depression, mood swings, ADD like symptoms and combinations of the above. Lyme as a cause of psychosis would seem to be quite rare.

Milk production: This may be due to a pituitary growth called a prolactinoma. Not
specific for Lyme disease. It may been seen in disorders of the hypothalmic pituitary axis which have been described in Lyme disease, but its association with Lyme disease is still low on the list of possible causes.

These symptom lists are published on the world wide web and linked to the ILADS web site.

Lyme disease is frequently a multisystem disease. It can be associated with a surprising list of symptoms. Patients cannot self diagnose. Only a physician, after carefully weighing all the clinical data can make the diagnosis. Patients may look at expanded symptom lists and reach unwarranted conclusion, as is the case with the patient I alluded to at the beginning of this Blog.

Such all inclusive symptom lists may create the erroneous impression that LLMDS think that everything is caused by Lyme disease. And this is simply not true.
I am a member of ILADS. My comments here should not be construed as an effort to disparage ILADS or Dr. Burrascano. Lyme disease and associated guidelines are in a state of flux and refinement. To the extent that my comments may seen as critical, my intent is to provide only constructive criticism.

20 comments:

PatJ. said...

I don’t mean to contradict or refute any of your words, not because I swallow everything you say without analyzing it, but because I think you are mostly right; but I would like to add my opinion as I think it might help in the debate. Not about Burrascano’s doing good or bad adding so many symptoms to the Lyme soup which is obviously very confusing to many, but I would like you to consider what I think about the neck stiffness.
I read all your blogs and I always wondered why did you “kind” of “ignore” the “stiff neck” as a vital symptom of having Lyme, and this blog “kind” of explains the reason; by itself it means nothing. Having stiffness in the neck and nothing else doesn’t point to Lyme at all; right, absolutely. But when there is an extensive list of symptoms, I think – I, as a sufferer, think - it should be considered as one of the most important symptoms Lyme generates. Why? Because I think it is one of the most vital indicators of the condition of the patient when suffering Lyme disease. When the stiffness is vanishing the person is getting better, feeling better at least! And why do I think this? Because I’ve seen that the stiffness in the neck is not caused by tension, or stress – talking like the stiffness I had when used to work as a journalist and had to write a news report in five minutes? No, not that type of stress – this stiffness is caused by swollen glands; so swollen they don’t even look like glands but like part of the neck. It is like having columns holding the neck; Lyme patients look like those big neck wrestlers. And this swelling is so huge and hard that the neck muscles pressure the thyroid gland and with this pressure the hypo and hyper thyroid symptoms occur; the heart symptoms show up; the loss of hair, the weight problems, the skin ones… but that is not it. The neck stiffness affects the pituitary gland, and there’s where everything in the body goes out of control, including the fibromyalgia and the arthritis. Am I throwing all the weight of the Lyme disease to the neck stiffness? Part of it, yes, but just as a cause, as a symptom that generates more symptoms – is this medically correct Doctor? So then the question is, and what caused the swollen glands in the neck that caused the stiffness? And my answer is… please do not laugh, it is caused by a liquid, full of a weird bacteria that comes from the sinuses of the person!! EUREKA? Not a regular sinus, at the point many Lyme patients might not present sinus symptoms – me included – but it looks like it is a place where this bacteria likes to hide and seek, and then move to all around the body. Why this does happens? I don’t know. I just know that the neck stiffness by itself means nothing but it should be included in the list of symptoms due to regular Doctors who treat patients by the book might find it as an indicator. They might not even see the fibromyalgia associated to it as you do!!!!
Thanks for being there fighting for us.

Woody Woodroof said...
This comment has been removed by the author.
bitten said...

I also take stong issue with many of these opinions. Facial and teeth pain due to Lyme has been written about fairly extensively just as bladder IC has. Stiff neck should always at least trigger the thought of Lyme. You have written about such things as "prostate herx" and "foot drop" and yet challenge symptoms that have documented writings citing them as ones that should make a doctor think of Lyme. This mis very disappointing blog in light of the positive PCR from the 18 year olds gut despite 5 years of treatment. The bacteria can go anywhere and causes constant inflamation. My neck hurts so bad and is so stiff with massive headache. The craniel nerve that controls facial/mouth/throat/teeth pain has been effected and other doctors confur. i don't see how anything can be ruled out. i.e. recent patient with fluid on the heart? but now this blog says Bb usuallu causes heart block/other but no mention of fluid on the heart. I believe this needs rethinking and possibly some research.

Seibertneurolyme said...

During the course of hubby's 8 year tickborne illness his most consistent symptoms have been nausea, vomiting and dry heaves and also tremors, myoclonus and seizure-like episodes. If we had ignored those symptoms he would never have been tested or diagnosed with Lyme, babesia and bartonella.

He did lose 30 pounds early on due to gastritis or unknown etiology. This was his initial presentation.

Over the years he has had many other symptoms on the list.

Your list is of symptoms you think should be excluded -- how about a list of symptoms that should be included but aren't?

I still don't think I have ever seen anything in the medical literature regarding tremors from Lyme disease. Very little regarding muscle spasms, myoclonus or dystonia. But just about every long-term patient has some type of muscle tic or twitch or spasm or tremor at some point in thier illness.

Moosie said...

@Siebert:

Yes, I can attest to this. Most of the time I feel more like a collection of nerve tics and muscle spasms, than a human being.

And the stiff neck / neck pain is fairly constant. Imagine an egg (your head) perched on a cradle or tripod. And everywhere the egg touches the base, it hurts.

@LymeMD:

I was a bit puzzled by this post, based on your previous writing, but after reading the NEXT post, all is clear, and I'm not surprised to find that I still agree.

Thanks again for sharing all this. You are one of the *very few* LLMDs I've encountered that maintains such a thorough, consistent, balanced viewpoint.

Thank you!

Sherry said...

You are a twit.

lyme4achange said...

I don't think Doc said that these aren't symptoms of lyme. I don't think he's a twit. I think he's a good doctor.

I think he said that if they stand alone you should look for differential diagnosis. Because not everything is Lyme.

Run of the mill stiff neck, for example, can be a lot of things.

An old injury. Bad ergonomics at work, home, or bending over a laptop. Stress. Subluxation. Chiari. Ehler's Danlos syndrome. A side effect of hormonal migraine. Needing new glasses because you are straining to watch TV. Degenerative disc disease of the cervical spine with spondylosis and radiculitis. And on and on.

Yes, stiff neck can be caused by lyme...due to swollen glands or increased pressure, muscle atrophy, increased cranial BP due to antibiotic use in sensitive people. Or a combination of these things. Its likely that everyone who has Lyme suffers from stiff neck if not chronically than at some point in the disease. I can hardly move my head anymore and I have more than one problem causing my severely stiff neck, lyme and chronic lymph node swelling only being one factor in my neck problems.

But there are so many other things to consider when you are a good doctor and diagnostician. We NEED free thiking allopathic diagnositicians. Remember folks, being open minded means being open minded to more things than TBI's. If we focus on stiff neck or any one symptom to get a clinical diagnosis we are disserving ourselves and the doctors.

BB infection and recognizing it is very important for the next generation, so that they do not suffer as we have. However, you CAN have more than one problem. And if you have a doc who is willing only to look at TBI's for the illness, thats a dead end.

Imagine getting a clinical diagnosis for Lyme when you in fact had HIV...which also causes severe stiff neck, lymph node swelling and fatigue. Imagine if he never looked any further. Espcially if you found temporary improvement on antibiotics, which you probaby would.


Or, what if you had BOTH? What if you had Lyme by PCR or WB and you stopped looking and actually had HIV, too?

My google ID is Lyme4achange because it is time to get out of the everything is lyme mindset, and because many whom have become open minded about TBIs closed their minds to other illnesses. When you close your mind to differential diagnosis you do just as much damage to the issues surrounding our diagnosis as to others. You'll have people standing up and screaming that they missed their HIV or Lymphoma until it was too late because their clinical symptoms fit lyme, too, and got misdiagnosed with lyme.

The mindset shown here is discourgaing because the doctor is trying to make you all think about that...and he is getting just as much resistence from the patients here as he gets from the IDs when it IS lyme.

mindy said...

Hi...I wanted to tell my story of doctors who ignored my symptoms and WOULDN'T test me for lyme disease. 2 years ago, I got a rash on the spot where 3 days before was a tick. went to my dr who treated me with antibiotics for lyme. He said that if the rash got worse to call him. It got worse, I called him. He told me to go to the emergency room to get iv antibiotics. There, the dr changed my diagnosis to cellulitis(sp), and my antibiotics to one that works for that particular rash. So, then, around 8 months ago, I was experiencing pain and swelling in my legs, and fatigue. I said that I wanted to be tested for lyme. He reminded me that I have anemia, and said to take a one-a-day with iron. Then I started having panic/phobic attacks. I made an appointment with a new doctor who did blood work to test for lyme and other things. Tests came back positive for lyme. Well a little late!! She tried a round of antibiotics, and tests still show positive. So I want to ask a stupid question, will I always have lyme, and does it get worse as I get older(I'm 49)? Can you tell me what to expect? And, I was told by my hair stylists that I have a bald spot the size of a quarter on the back of my head. She said that I should have a doctor look at it cuz of neurological problems. Does that sound like a symptom of lyme??

pritih said...

The later phases of Lyme disease can affect the heart, causing inflammation of the heart muscle. This can result in abnormal heart rhythms and heart failure. The nervous system can develop facial muscle paralysis (Bell's palsy), abnormal sensation due to disease of peripheral nerves (peripheral neuropathy), meningitis, and confusion. Arthritis, or inflammation in the joints, begins with swelling, stiffness, and pain. Usually, only one or a few joints become affected, most commonly the knees. The arthritis of Lyme disease can look like many other types of inflammatory arthritis and can become chronic.
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Precious said...

@PatJ.

Not all patients have a swollen area around their neck (it's most likely that skinny patients don't have that swollen lump on their back).

Alex
Lyme Disease

Advin Charles said...

Lyme disease is an infection that is spread by ticks. Lyme disease is lack of energy that does not get better. Lyme disease is Trouble focusing your thoughts.



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Katharine said...

I don't think the big issue here is people who think they have Lyme, but do not. The big issue is the group of people that have Lyme and don't know it. We have enough nay Sayers. Show support for Lyme disease. This blog is ridiculous. Isolating any one symptom in a chronic disease does not shed much light. I have had TMJ since I was 12 years old. My jaw got locked shut. It is now 30 years later and I am finally treating this disease that began all those years ago. You do a disservice to those who are suffering. You are insulting to those if us who can isolate the beginning of this illness back to one stand out symptom.

Frank Lindholm said...

Your blog is a joke. It does a disservice to all those who have Lyme and don't even know it, and its only help might be to further the ideas that help mainstream medicine save money on treatment and avoid further research. You take many classic proven symptoms of Lyme as a separate and isolated symptom, and then say that "by itself" it does not prove Lyme or that is not specific to Lyme. Why would anyone make such an obvious (while obviously misleading) statement? Of course these many symptoms might be caused by many other root issues. DUH!!! as we all used to say as chilren to such idiot, ridiculous statements. If you're really interested in shedding any light on Lyme, you'll have to do much, much better, as your current focus, statements and viewpoints are very obtuse to the important points, issues and education about Lyme. Thanks for nothing.

Frank Lindholm said...

I've had recurring headaches for all of my adult life. Throughout my adult life, I have also had bouts of other recurring symptoms like: muscle spasms, muscle twitches, shooting pains, pain that feels like something is drilling itself into my bones, unexplained, spontaneous stiff neck or severe muscle cramp in the neck (spontanneously occurring within a matter of minutes, and out of the blue, and with no explanation or cause) that leads to a several days long inability to move my head that is accompanied by severe neck pain and inflammation and often headache. This can sometimes take more than a week to resolve itself, and often before it does, this same thing seems to move to other parts of my body while resolving from one location and taking up residence in another and causing similar symptoms there before finally resolving (until the next flare-up). Add to that list of symptoms: other types of unexplained pain, tingling, burning and numbness in numerous parts of the body. Most of the time, none of these symptoms are present, and I am an extremely healthy person who eats only healthy foods and I am extremely athletic, fit and toned and I would call myself an "athlete". As a child, our family lived in Minesota and we all were exposed to the high probability of tick bites as children. Every person in my family has had several recurring symptoms of Lyme, and my sister has MS. All of our symptoms tend to stay away more when we are immunologically healthy and doing everything right that seems to work for each of us. However, when we do things that are unhealthful like eating the wrong things, not getting enough sleep, overworking, or doing other types of things that put stress on the body, these problems seem to flare into their recurring cycle patterns. For the last several days, I've had daily headaches accompanied by shooting pains in various parts of my body and very strong muscle twitching in my right arm tricep and unexplained muscle cramping in my feet and hands. This is one of the times that I really didn't do much to bring this flare on except for not taking any vitamins for several weeks and eating a bit of sugared candy and cookies. With all I've read about Lyme, to me, these symptoms REEK of Lyme.

Virender Siwach said...

I get sudden jerk in my neck and at times complete body when I about to sleep but am awake. Now I have started getting twitches even while watching TV. I have realised it happens when my thought process ceases or when I see something in TV or film which is unusual. It seems i have become very sensative. Can any one guess the reason. I have stiff neck since this problem began.

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GWB said...

It's been 6 years since you wrote this article. I wonder if you've come to different conclusions since then? I've had lyme disease since 1994 but was not dx until 2005. I've been a long time member of many lyme forums and they symptoms you list as not being lyme specific are more lyme specific then you realize. Doctors often tell their patients to get off the internet. I often tell my doctors to get on the internet.

I would encourage you to join a few lyme forums and read for yourself the symptoms people are experiencing with this disease. Lyme carditis is more common than people realize. Leaky heart valves, many lyme patients are dx with this. Spirochetes live in the mouth, they do tremendous damage to our gums and teeth. Read about it from holistic lyme literate dentists who deal with this. TIA symptoms, I have them often. Severe neck cramping, another symptom I have more and more frequently now, and many others with lyme have this too. I could go on and on but no reason to.

I know you're among the best of the best LLMD's in the US. I refer people in to you. But I do hope you've learned since you wrote this blog that, yes, many of these symptoms you listed are symptoms that many lyme patients experience often, or daily. The problem is, how can it be proved? That's not always possible, but the reality is, when you see lyme patients posting the same symptoms on almost a dozen or more lyme forums, I don't think it should be disregarded as a possible symptom of lyme disease.

Thanks for all the great work you are doing and people you are helping.

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