Friday, October 7, 2011

Some of the physiological affects of Lyme

Here are only a few ways that Lyme can affect the brain and physiologically diminish a person abilities.

Extreme Irritability and/or Emotional Lability
Many patients reported mood and behavioral changes during the course of their illness. In our sample, 64% of patients reported increased irritability and/or emotional lability in association with symptoms suggestive of meningeal irritation: neck stiffness and headache. The mood and behavior changes are often so severe and pervasive as to constitute a personality change. Sudden, intense irritability is most often triggered by sensory stimulation in patients who are acutely sensitive to sound, touch or light but may also occur unprovoked and seemingly inexplicably. One man, acutely sensitive to sound, was so intensely bothered by the noise his three-year-old son was making that he picked him up and shook him in a sudden and unprecedented fit of violence. His wife was shocked and alarmed by this behavior, as was the patient himself. A woman, typically reserved and eager to please, became uncontrollably irritable one day at work and found herself yelling at her boss in a most uncharacteristic fashion. Others have found themselves bursting into tears, sometimes several times a day, on what seems like very little provocation.

Word Reversals When Speaking and/or Letter Reversals When Writing
These odd, idiosyncratic but quite common symptoms were reported in 69% of our sample. Patients with no prior history of dyslexia have found themselves writing letters backwards, reversing numbers or routinely reversing the first and second letters of a word. One patient recalls also switching her shoes: putting the left shoe on the right foot and the right shoe on the left foot before she realized her mistake. This patient also experienced what might be understood as reversals in temporal sequencing: for instance, saying the word "tomorrow" when she meant "yesterday" and vice versa.

Spatial Disorientation
Reported in 57% of our sample. A not uncommon scenario is of a patient who, recalling no rash or flu-like symptoms, had experienced some aches and pains and/or memory problems but had not paid much attention to these symptoms until he found himself, on two consecutive days, lost in his own neighborhood, on his way home from work. Such a scenario suggests a disorder of topographic orientation and geographic memory such as may be seen among patients with parietal lobe dysfunction (45). Patients have reported other behaviors as well which seem to relate to disturbances of the body-environmental schemata. A young woman described repeatedly bumping into things on the left side of her body, dropping things from her left hand despite having no weakness in that hand and occasionally placing objects, such as a milk carton, several inches short of a table edge with the result that they would fall to the floor. These difficulties remitted completely following adequate antibiotic treatment.

Fluctuations in Symptoms
This can be one of the most frustrating and perplexing aspects of the illness. A patient with late-stage Lyme disease might feel totally drained one day, the next day be able to function almost normally and the day after experience such mental confusion as to be unable to focus on even the simplest of tasks. Sometimes the fluctuations may be brought on by exertion or stress or exposure to sensory stimuli or by the initiation of antibiotic treatment, but sometimes no explanation can be found. The fluctuations make it impossible for patients to make plans, and may make it seem to friends, teachers, family members or even the patients themselves as if the symptoms were somehow under voluntary control or as if they were hysterical in origin. Of course psychological factors, too, can influence symptomatology, but fluctuations are typical regardless of mental state.

Such vicissitudes raise a particular problem in children who may experience fluctuating cognitive impairments: short-term memory problems, word-finding difficulties, dyslexia, problems with calculations or inability to concentrate. School systems are by and large unaware of the cognitive aspects of late-stage Lyme disease and, in particular, of the ways in which cognitive impairments may fluctuate from day to day in a given child. Teachers may assume the child is just moody or uncooperative. Family dynamics, too, may be complicated by confused expectations of the sick member, and resentments may build when a person's functional status, mood and ability to participate in family life seem inexplicably erratic. Patients and family members alike find it difficult to have their hopes raised repeatedly by a transient clinical improvement, only to be slapped down again by a recrudescence of debilitating symptoms. Even with treatment, recovery from late-stage Lyme disease is most often a lengthy process involving significant fluctuations in symptoms even in the context of overall improvement.

Worsening of Symptoms During Antibiotic Treatment
Nearly half of the patients in our sample reported a transient worsening of neuropsychiatric symptoms during the first few days of antibiotic treatment. The worsening of symptoms during initiation of antibiotic treatment is thought to be a variant of the Herxheimer reaction as seen in the treatment of syphilis (33). In Lyme disease, however, this Herxheimer-like reaction can be quite prolonged-lasting a few days or longer-and can be frightening to patients who are expecting a resolution, not a worsening, of their symptoms. The reaction can sometimes be difficult to distinguish from an allergic reaction to the medicine, a distinction with obvious and crucial treatment implications.
This Herxheimer-like reaction may be experienced as a worsening of psychiatric symptoms: some patients in our sample experienced panic attacks for the first and only time when starting on antibiotics. Others have reported an intensification of depressive symptoms, suicidality or anxiety. Many reported an increased startle response and photophobia during the first few days of antibiotic treatment.

For more information on this article visit the Canadian Lyme Foundation

Saturday, July 30, 2011

Books I like

I am often asked what books I have read about Lyme or found helpful. Here are some of my favorites.Insights in Lyme Disease Treatment 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies by Connie Strasheim, Maureen Mcshane M.D. and Thirteen Lyme-Literate Doctors

Cure Unkknown Inside the Lyme Epidemic by Pamela Weintraub

Beating Lyme Understanding and Treating This Complex and Often Misdiagnosed Disease

Everything you need to know about Lyme Disease and other tick Bourne Diseases

Saturday, July 9, 2011

Hyperthyroid / Graves disease

I was just thinking this evening how little I have spoken about Hyperthyroidism / Graves disease. This too was a symptom of Lyme. It is more common to have a Hypothyroid but either way your thyroid can be affected. I had the typical symptoms
Heat intolerance
Fast heart rate
Trembling hands
Weight loss
Muscle weakness
Warm moist skin
Hair loss
..then when I went to the doctor her first response was that I should have my thyroid killed - which is permanent. I remembered what my cousin once said to me (who also had a thyroid problem -don't ever let them kill your thyroid if you can help it- since it was so difficult for them to regulate her and she still has problems) in any case I said no I wanted to try the medication first. In many cases a Hyperthyroid can go into remission and that is exactly what mine did. I was on the lowest dose possible and within a matter of weeks it was normal. They kept me on Tapozole for quite awhile even though I didn't think I needed it any longer but they wanted to be sure.

Before I tested positive for Lyme I remember speaking to Dr. Harris and asking him if my Hyperthyroid could be a symptom of Lyme and his response was that Lyme systematically goes through your body effecting your immune system and turning things off and saw no reason why it couldn't.

"This usually starts with the adrenal glands. No, I don't mean the thyroid, I mean the ADRENALS. Many physicians and patients start on the wrong end of things by first giving the body thyroid hormone, but this isn't usually how it should be done.

Why? In Lyme disease and chronic illness, the thyroid often malfunctions as a result of the adrenal glands, which are pooped from having to deal with so many bugs, toxins and stress. Treating the thyroid first puts greater stress on the adrenal glands, which then exacerbates the whole endocrine problem. Not treating the thyroid, however, can also stress the adrenals, but if you sense you have adrenal fatigue, it's best to deal with this problem first. "

Click here for more information

Thursday, June 16, 2011

What were my Symptoms

I was asked this morning what were my symptoms and how could I tell the difference between Lyme or Bells palsy. For one I had no idea it was Lyme everyone said that I would probably recover quickly maybe a week or two a couple months at most. But I knew this was something different. The sever exhaustion, pain in the back of my head, I couldn't see well out of the affected eye. I wasn't able to drive I didn't have the energy. I felt like someone had sprinkled some kind of germ warfare all over my body. I felt like I couldn't complete a sentence and couldn't multi task along with slurring my words....anyway these were some of the symptoms that lead up to my Bells Palsy and after.

These were my main symptoms
Headache, migraine
Pressure in the head
Tingling of nose, cheek, face
Twitching of facial or other muscles (motor tics)
Jaw pain or stiffness (TMJ-like problems)
Sore throat, swollen glands
Increase in allergy symptoms
Unexplained hair loss
Pain in ears
Ringing, buzzing, tinnitus
Oversensitivity to sounds
Upset stomach (nausea, vomiting, pain)
Bone pain, joint pain, joint swelling, or stiffness
Shifting joint pains
Drooping shoulders
Shortness of breath, can't get full/satisfying breath
Diminished exercise tolerance
Burning or stabbing sensations in the body
Numbness, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Light-headedness, wooziness, brain fog, fainting
Felt like I had Meningitis (inflammation of the protective membrane around the brain)
I had a lot of these
Forgetfulness, memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration, reading, or spelling
Word retrieval problems (can't remember words, stop at mid-sentence)
Dyslexia-type reversals, difficulty with writing
Problems with numbers
Difficulty with speech (slowed, slurred or stammering)
Forgetting how to perform simple task
Attention deficit problems, distractibility
Difficulty with organization and planning
Difficulty with multitasking
Slowed speed of processing
Extreme fatigue, tiredness, exhaustion, poor stamina (Chronic Fatigue Syndrome)
Swollen glands, swollen/painful lymph nodes
For a full list please visit my Lyme symptoms link

Ticks, Lyme disease creeping northward

From Maine: “When the ground is dry, ticks just kind of hunker down under the leaves...but after a heavy rain, they’ll be out like gangbusters.

The recent cycle of chilly, rainy weather may be discouraging for sun-starved Mainers, but deer ticks, those minute carriers of the organism that causes Lyme disease, are liking it just fine.

“When the ground is dry, they just kind of hunker down under the leaves and they don’t come out until it rains again,” said Chuck Lubelczyk, a field biologist with the vector-borne disease lab at the Maine Medical Center Research Institute in South Portland.

Scientists searching for deer ticks to study often strike out when conditions are dry.

“But if we go looking after a heavy rain, they’ll be out like gangbusters,” he said.

Scientists aside, cool, damp weather for deer ticks is not high on most people’s summer wish list. It’s not just because all ticks are creepy little arachnids that bite a hole in the flesh of their host, inject an anticoagulant to keep the blood flowing, and then latch on until they are bloated and engorged.

View Article

How to remove a tick

Saturday, March 26, 2011

Insight into our Local Medical Facilities

I just got some interesting insight into our local medical facilities about Lyme the other day. I was talking to a nurse practitioner and asked - why do the practitioners around here dismiss Lyme so easily when it is obvious that it's here. She said that's because it is not within their standard guidelines and they are told to not even go there. I said are you kidding me?

So people are left not having a clue what may be going on with them? She said people need to see a special doctor and we don't have the time for that. I said but you don't even offer that information. It can easily be treated if you catch it early enough and I know many local people that this has happened to and without early diagnosis treatment can run into the thousands of $$. - just unbelievable.

It doesn't matter where you live, if this is the general view and opinion of most clinics or doctors you need to be aware -because they are not going to be that helpful in most cases to a diagnosis or give you the treatment that you need, you really need to be vigilant.

I don't even want to imagine where I would be right now if I didn't get treatment. It was systematically going through my body affecting face with Bells Palsy, my thyroid, etc. not to mention the shear exhaustion and not being able to think, slurring words and not being able to complete a sentence and thinking that I had Meningitis.

A friend of mine just told me that a local doctor told her last year that some locals are "GRAND-STANDING" - totally dismissing the validity of Lyme in our community! (looks like that would be be)

I would be happy to say I will and am taking a stand and it will be GRAND !!! to help educate people about Lyme ... I can't tell you how many of my students after hearing my story have found out that they or a loved one has Lyme. I just wish instead of dismissing it they would consider the possibility. just nuts!!

Letter from Canada
I got told by my family doctor it was a very rare disease here in Canada. She hadn't seen a case before!!! I asked her if she had ever tested anyone for it... I expect you can guess the answer :( There are so very few doctors here who will treat it. Those that do get into all sorts of trouble. One doctor in the GTA has been told in no uncertain terms if he treats anyone else for lyme with anti'b's for more than 2 months he will be struck off as this is not standard practice. How do you fight the system to get the treatment you need?

My response
That has happened to many doctors especially on the East Coast. Treatment and doctors almost seems to be underground due to the standard guidelines. It has a lot to do with politics, insurance companies etc. a good movie to understand why it is that way is to watch the movie Under Our Skin

When I finally got the right test, I asked the lab director how do I find a doctor that knows what he's doing, his response was. Find one that treats well beyond standard treatment guidelines and uses integrative medicine....I could have cared less..I thought it would be a quick fix a couple of months at the most. Only to find out that I wasn't any better a couple of months into treatment and if I would have stopped - I would have still been dreadfully ill. It took 1 1/2 year of oral antibiotics and 6 months of a pic line - it took a total of 3 years to really get my energy back and I still worry about it sometimes. My body has now finally recognized that I have a problem and I do all I can to support my immune system as much as possible to be able to fight this thing.

Monday, March 21, 2011

Bells Palsy and what I did

Well they said I would never recover I haven't fully but it is much better than it was. my face was a mix between flaccid and a Hemi facial spasm so it looked a little swollen in my cheek, my eye was wide open as many peoples are then for awhile it seemed that it was going to be normal size then it started to get smaller than my good side.All of my nerves in my face seemed to be attached to my eye. meaning when I made any movement with my mouth my eye would try to close.

The nerves in my neck, face and head were all attached to my shoulder, so everything went into pain at the same time. It seemed that most practitioners did not know what to do to help so I have spent a lot of time and money trying to relax all of those facial muscles, nerves and adhesion's, (it would be similar to someone that has a knot in their back and having a message to try to release it).

This is what I did.
I first started with straight acupuncture about a week after the BP first hit. I could I see out of my affected eye nor did have the energy to go anywhere (due to the Lyme-which I didn't know at the time. I simply could not function).

After three months my neurologist said I would never improve, I told her that I had just started to get back the tinniest movement, and that I actually made a tear after watching a touching movie of animals - that was a HUGE deal - I made I tear ! I was SO EXCITED - the tinniest thing was such a big deal.

It was not until I asked for electrical stimulation on the needles that it seemed to make the a slight movement in my upper lip (and this was three months after the initial damage). That was when I realized that I could not believe everything the doctor said.

I told the doctor about the electrical stimulation that I was doing and how I thought that this was the only thing that made any difference. She then prescribed Physical therapy - with stronger electrical stimulation which may have been a little too strong. I feel as people with BP we need to be careful that we don't over do it because then it seems in can go in the opposite direction and then turn into a jokers smile so pace it, meaning hit it hard, then give it a break, then over again.

I might have done more of the electrical stimulation but I was also dealing with the Lyme / Babesia and could not afford the Lyme treatment and treatment on my face at the same time. It was not until I was officially in remission that could I then turn my attention back over to my face.

About 3 1/2 years later I then started to see an osteopath. (I tried one before without much success she really didn't do much and I noticed no difference). This time this doctor was not gentle and found out that I had NO IDEA how much pain I still had in my face until he touched certain areas of my jaw, inside my mouth, touched parts of my face by my brow and nose and by my ear. I was in agony, wanted to cry, I wanted him to stop but just let him do what he needed to. (It was funny how I looked forward to my appointments with him where I knew that i was going to be in pain) but I think what kept me going was intuition and the realization and shock that my face still was in pain.

Electrical Stimulation
I would see him once a month then after a month or two the pain subsided, it started to feel sort of like the other side and people started to notice that I had more symmetry. I was please that people that hadn't seen me in a few months could actually notice a difference and that my face didn't feel as pulled anymore. So I feel what the doctor was able to do was to take the areas that were frozen and now have those channels open up for stimulation.

I then started Macro Electrical Stimulation ...apparently a very old technique with electrical currents that are compatible with your body it's not noticeable, only if it touches dry skin, then it is a slight zap. What they do is place a wet towel over the area that they want to treat then apply the current. The current is focused in these areas but runs through your body...the current it is very very slight and as I said not noticeable.

I'm coming up to 4 years on May 4, I'm happy to be where I'm at, have quite a bit of energy (which is huge) I am now able to exercise, trying Zumba (1-3 times a week, and am actually sweating (something I don't usually do) and when I do I think of all of those little creatures (Lyme) and how I am making an an environment that is hostel to them. Exercise, sweating, breathing and attitude.

Wednesday, March 9, 2011

Bells Palsy Update - it will be 7 years in May

Like many of us with residual BP when possible I prefer to wear my sunglasses when possible

I am really happy to have to have as much of my face back as I do,they said I would never recover.I still try not to smile too big when taking photos, because when I do my face is still a little cock-eyed.

The doctors wanted to put a gold weight into my eye-lid, but I thought - they just don't know me very well and I did not accept their opinion. I did go through a lot of acupuncture with electrical stimulation, PT with electrical stimulation and macro electrical stimulation. I have also been seeing an osteopath (something I never believed in before) but to my shock when he started to work on my face - I had NO idea of how much pain I was still in, until he touched certain areas of my jaw and neck. It would be similar to someone having a tight muscle in your back and having someone massaging it to work it out. Now it feels similar to the other side but it still pulls in areas of my neck and eye.

I haven't had any therapy for about 2 months and nothing seems to be improving any longer. I might try a little more but I know that I have pushed my recovery to the limit. They say your going to get as much back by about 2 1/2 years but I am here to tell you my recovery has been ongoing until now slow but steady, so don't believe everything they say but you must take control and get some sort of electrical stimulation.

Friday, February 25, 2011


I have just done two back to back workshops, one in Lake Charles LA & the other in Houston TX. I have been feeling great ...other than getting over a cold. I got home around 1:30 am this morning and still feel good but a little tired. I have a few little twinges in my knee etc. then get a little paranoid - is it coming back? am I over doing it? I really try not to live in fear of a relapse.

I want to "live" life and not live my disease. I know they say it never really goes away. So I try to be mindful of taking my supplements, exercise, and watch my stress level. I don't really feel as if traveling and teaching is stressful even though it is alot of work. I feel the potential drama of everyday life can be more stressful. My plan is to continue one ontil the middle of summer then see my doctor again and get more blood work to see how my body is handling everything.

Lake Charles Feb 2011