But notwithstanding if you look at the percentage of people who have Lyme Disease and have continuing symptoms, 90% will have fatigue, 80-90% will have musculoskeletal symptoms and 50-80% will have some kind of neuro-cognitive symptomology.
And, under the minor criteria – I use the word ‘minor’ carefully – that these symptoms can be very predominant as well and headaches are present in about 80% of people. I am just putting together a study of paediatric patients that we have seen and hope to publish about the results of 200 of those with chronic Lyme Disease and detail the percentage of symptoms but I think what helps with the diagnosis is not only that you have fatigue in combination with myalgias or arthralgias or neurologic symptoms - cognitive symptoms such as memory, most notably short term memory loss, but also other confusional states and if you separate cognitive from mood and then you have mood disorders as well and Dr Brian Fallon from Columbia has done, I think, the seminal work on neuro-psychiatric manifestations where patients can have predominantly psychiatric manifestations - Bi Polar Disorder. At the end of the day, you can say Lyme is the cause of everything. And that is the problem, you have to be very careful about how you bear all of this out. I think Lyme Disease is certainly the major cause of multi-symptom disorders in an endemic area but is not the only cause there are other causes remaining to be discovered.
I think that may also determine whether some are more antibiotic responsive and others are less antibiotic responsive because if you have certain viral diseases typically Epstein Barr virus is still talked about as a cause of chronic fatigue syndrome that if we really had a good anti -Epstein virus anti-viral drug then we could test that hypothesis better by using it as a test just the way we do with antibiotics in treatment of chronic Lyme patients. Is that not the ultimate test of whether you respond and whether your disease has a cause and effect relationship.
But back to the more minor symptoms, you have a variety of headaches different than migraines. Headaches that are not amenable to any relief and as you treat the patients now the headaches become more amenable to routine pain relief from aspirin or acetaminophen.
Eye symptoms varying from optic neuritis itself to blurry vision, to pain, to conjunctivitis, light sensitivity.
Ear symptoms – ear ringing, humming, buzzing, loss of hearing, increased sensitivity to sound.
Jaw pain is a particularly interesting and telling symptom. Of all these symptoms, the most discriminating ones are paraesthesias, palpitations, jaw pain. I mean Bells Palsy makes it easier, although for some physicians it’s a little tougher because Bells Palsy is caused because you left your window open whilst riding in the car and so you get a Bell’s Palsy. And Herpes is not the cause of all Bell’s Palsy but there are multiple causes probably, and so Lyme Disease has to be thought of now routinely and the impulse to treat the Bell’s Palsy with steroids I think should be avoided now that we know that an infection is responsible for some of these cases and the Bell’s Palsy will basically go away anyhow, or not go away, steroid or no. But nonetheless I don’t want to be too critical about the use of steroids in Bell’s palsy. I would prefer that it be done under the umbrella of antibiotic use just in case you are dealing with it. In the Bell’s Palsy, it can occur in children as was demonstrated earlier by Dr Ross, and I think that is a very telling thing. It is very unusual for children and youngsters to get Bell’s Palsy so once you think of Lyme Disease as a major cause. Bell’s Palsy at its earliest can occur about two months after the tick bite but may occur years after the original exposure.
I think one of the other things clinically that needs to be appreciated is not all patients with Lyme Disease have severe Lyme Disease. That many who are out there because they are so distressed by their symptomatology would make it appear that in order to have Lyme Disease you have to have a severe form of it. Whereas, as with any other illness you have mild disease that never gets worse, you may have moderate disease, you may have asymptomatic disease. And we need to study that. The only study that was done about asymptomatic disease was with titres in the 80’s and no Western Blot studies have been done in the United States of asymptomatic background and I would like to do that on the Cape where there is an endemic area as well as in non-endemic areas. And we need to organise those kind of studies that are rather easily done to get more awareness.
There was a publication a few years ago from the Munich area that said there was a 20% background reactivity. I think from a publication from Warsaw, if I am not mistaken, apologies if I have that wrong, when they looked at a psychiatric hospital 30-50% were sero-positive versus 5% of the control population. So we need, just as in the early days, it’s like medieval times come back, and people were in psychiatric institutions and they discovered that they might have organic disease be it syphilis, be it tuberculosis, be it a variety of illnesses. I think we are back to the future if you will. We need to come back to this and examine people who have psychiatric disorders from other than a psychosomatic point of view. I am still amazed there is a journal of psychosomatic medicine. I don’t know how much more progress we need to make in medicine to realise that psychiatric symptoms are most likely going to follow some other organic driver from that point of view.
But it is easy when you have complex of symptoms and you have additional baggage, as I call it, you have had accidents, psychological trauma, losses in your life and then you have these symptoms, to say ‘Oh it must be due to that’. But most patients with Lyme disease don’t want to have these symptoms. There are a few that you question whether there isn’t this additional input that makes it difficult for the diagnosis but we have that as an issue.
But the palpitations are interesting and I can put tachycardia there. They can have skipped heart beats, they can have racing heart, pounding heart and they almost all end up in the emergency room where they go to the cardiologist, they get an echo, they get a stress disorder. We are talking about 20 year olds, 30 year olds, people who are not in a position to get coronary artery disease.
And the parathesias are not just because you had your arm hanging over a chair but you have numbness, tingling, burning is a particular interesting clue and you go to the neurologist and you have neuropathy. This is the diagnosis. Well that is a nice circular argument that you have something wrong with your sensory nervous system.
This is an interesting one. Shortness of breath. I have become aware that phrenic nerve palsy may be a cause of this so maybe in some patients where there is a shortness of breath there ought to be a radiographic examination to see if there is an elevated diaphragm or a poorly responsive diaphragm which may give a clue.
Tremors – I won’t put Parkinson’s Disease into this picture. I think Parkinson’s is a separate disease but Lyme Disease can produce coarse tremors and fine tremors as well, but usually not produce rigidity, or a bobbing head or a shuffling gait and I think one of the issues and one of the errors, if you will, is to try and overly lump everything into one disease that all MS, all ALS, all neurologic diseases are due to Lyme Disease and I think the mainstream Lyme Disease is typically sensory neuropathy. The animal experiments that support the idea as well as the clinical picture that these patients suffer from a sensory neurone disease and, if you think about it, it must be that these bacteria, the Borrelia, localise at the sensory nerve roots as opposed to the motor nerve roots which are typical in Polio and Lou Gehrig's Disease. Most Lyme Disease don’t actually have a paralysis, the Bell’s Palsy being a little bit unusual. There are a few circumstances that they might have motor problems but by and large it is a sensory neuropathy and thereby all these sensory symptomology. You have an autonomic problem and I think palpitations. The cardiac issue does not mean that the cardiac tissue is involved. Yes, there can be a myocarditis earlier on but this is rare. Heart block can be present and it doesn’t have to be a third degree heart block, a complete heart block, that was the original description but you can have first, second degree or varying degree blocks that are caused by Lyme Disease as well.
GI symptoms. I am not saying that ulcerative colitis and Crohn's Disease is due to Lyme Disease but you can get an irritable bowel type of picture with some minimal inflammation in the intestine on colonoscopy or by small bowel study. Seeing we don’t know the cause of Crohn's disease, there are interesting theories about atyptical micro-bacteria being responsible. I think we still have something to learn but I consider some of the irritable bowel part of the autonomic neuropathy of Lyme Disease and it is corrected as you go through the successful treatment so it seems like it is coincident with it. A lot of this is circumstancial evidence and as I tell patients as well as lawyers that Lyme Disease, especially as with other parts of medicine, is like the law: circumstantial evidence can be very strong or it can be very weak when you have it, it is helpful, when you don’t have it, it just makes the case tougher to go through.
GU symptoms are also prevalent: frequency, urgency. We are not talking about a 70 year old man with prostatitis or with prostatic hypertrophy, we are talking about someone with urgency. Interstitial Cystitis- that other illusive disorder in the animal models – bladder, especially in the hamster model, involvement with active spirochaetal growth in the bladder epithelium, haemorrhagic cystitis is common and there are a number of Lyme patients who do have haematuria of unknown cause that may be part of an irritable bladder/ cystitis kind of picture.
Fevers and sweats are also part of the illness.
Cognitive, mood-wise another interesting feature which I didn’t put on here. Sleep disorders. And of course, that is hard. You are tired but you cannot get to sleep, you wake, so there is disturbance in sleep and the reasons for that are not exactly clear physiologically speaking. One feature is interesting is that many patients of chronic fatigue stop dreaming and as you start improving them they start going through vivid dreams or nightmares and then as they correct themselves they go through and in and out of normal dreams.
So these are things that you begin to observe as you study these patients. If you want to study them and this is an example of a form that we use to go ahead and try and quantitate this. There are various quality of life measures and when you try to study the disease and you do control trials and observations – how do you quantify these symptoms? Do you rely on the patient entirely? Is there a better way to do it? We don’t have a better way right now other than to record the symptoms and these are just the first six there is another page that goes through this and it’s actually on one page.
We did factor analysis of our Gulf War Veterans Illness patients and of our Lyme Disease patients and I haven’t put that information together again - in another life I’ll publish a few more studies. But I think we can probably reduce the list – Dr Burrascano’s list is about 30 to 40, you don’t need to do that. I think we can probably reduce it to about 10 or 12 maybe 5 and then focus on those and grade the frequency and where the severity. It turns out you probably don’t need both. You just need the severity and forget the frequency. And the reason to forget the frequency is that when you ask a patient whether its chronic fatigue patient, Lyme Disease patient to record their answers to these particular questions I can’t help but think that they are influenced by how they are feeling that day. So if I ask them ‘please indicate whether you have had any of the following symptoms over the past two weeks and how severe they have been’. First of all, they may not remember what happened the week before and if they are feeling better that particular day they will answer in the more positive. So these forms are flawed but they are the best we have.
Whether you have a fatigue score sheet – in the Gulf War Veterans Illness study we actually use 4 or 5 forms. In the Quality of Life survey adapted for veterans use, there are 4 or 5 pages of questions that are interspersed to try keep you from focussing on one particular type of symptomatology. And then there are individual cognitive, fatigue and pain questionnaires. I think we need to try and get a simpler multi-symptom questionnaire and then use that in doctors’ offices as a routine to go ahead and get patients as they come in. Not to go ahead and give your entire medical history the way it is prominent in some physicians’ offices but specifically if you are dealing with this disorder and then this becomes more computer friendly and you can begin to store this information and access it later on. I do not access this information this way so I have to go back to my own dictated report and clumsily if you will, ferret it out and see how many have had what, which makes it very cumbersome. So as far as the clinical picture, you have multiple symptoms that are very difficult to distinguish from any other multi-symptom disorder. What do you do? Of course, you think about other possibilities. You go through tests of anaemia, could you be fatigued because you are anaemic? Do you have metabolic abnormalities? Do you have a thyroid disorder? And everyone goes through a systematic evaluation. Do you have a rheumatologic disorder? What is your ANA? What is you rheumatoid factor? All of these various considerations.
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