Tuesday, February 28, 2012

And they say there is No Lyme in Canada?

Rob Manten was camping at the Brant Park Conservation Area near Brantford when he caught a black tick biting him.

He began experiencing what he thought was a bad case of the flu. Daily migraines, fever, nausea, fatigue and a ringing in his ears (tinnitus) accompanied constant aches and pains. He suffered from dizziness and had difficulty concentrating. His family doctor diagnosed a sinus infection.

Over the next six months 18 doctors, internists and neurologists examined Manten as he launched a frantic effort to find out what was wrong. At one point he was told his problems were all in his head. Along the way he was tested three times for Lyme disease, an illness caused by the bacterium Borrelia burgdorferi, which is transmitted by certain types of ticks.

But the ELISA (enzyme-linked immunosorbent serum assay) tests, the standard first-level test for Lyme in Canada, were negative. Most Canadian doctors will not order a second test, called the Western Blot, which some consider more accurate.

Monday, February 20, 2012

Lyme in Australia

I have heard about this over and over again, is that there is no Lyme in Australia... but that's funny I have spoken to quite people down under that have it. Again it is another reason why you need to be your own advocate and not completely rely on your doctors option that there is no Lyme in your area. "Where there are ticks there is the possibility of Lyme".

I received this post from the California Lyme Association: Aussie 6-year-old tests positive for Lyme with blood samples sent to the US. Australian government says no Lyme in their country, so they won't pay for treatment....This is a typical response



A 6-year-old Fern Bay girl is at the centre of a major medical storm over whether a debilitating tick-borne disease exists in Australia.

A 6-YEAR–OLD Fern Bay girl is at the centre of a major medical storm over whether a debilitating tick-borne disease exists in Australia.
Laura France was diagnosed with Lyme disease late last year following tests done on her blood in the US.

Her family and several doctors are convinced she has the illness, caused by a tick bite, but NSW Health disagrees.

The department says the disease does not exist in Australia and will not fund any treatment for it.

The family is paying $3000 a month for medication typically used to treat Lyme.

Laura has trouble walking, struggles to catch her breath, suffers from severe headaches and is lucky to make it through a full day of school.

Michelle France said that at night her daughter had trouble sleeping, cried and complained of constant aches and pains.

‘‘On a daily basis it’s hard, we have had to buy a stroller to get her around, she is exhausted after walking short distances,’’ Mrs France said.

‘‘It’s bad enough that Laura is sick, but the battle to find help has been a nightmare.’’

Since the December diagnosis the Frances have found themselves thrust into an academic battle over Lyme disease, a bacterial infection spread by ticks that has reached epidemic proportions in the United States with up to 20,000 new cases diagnosed each year.

Left untreated it can become crippling. Read the full article

Thursday, January 26, 2012

PLEASE SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

Please sign this petition.It is so important to millions of people suffering from chronic Lyme disease and their caregivers.

Most doctors have to adhere to IDSA guidelines in fear of the possibility of loosing their license US & Canada (not so much in CA)

Insurance companies do not have to pay much if anything due to the fact that they are only suggested guidelines - leaving the patient with only enough treatment if any to make their condition chronic.

Since some insurance companies pay only a small portion or treatment the out of pocket expense to the patient is enormous. Length of time to Diagnosis Average cost
Less than 6 months $ 34,000
7-12 months $ 68,000
More than 12 months $ 92,000

Most people have no idea that they even have the disease until they are in the late stages of Lyme. It is an average of 7 doctors and 21 months before it is even suspected. I my case it was 1 1/2 years even though I suspected it and requested testing - but they doctors thought it's not here in CA or West Marin. Leaving me to get sicker and sicker and the final cost over $ 150, 000

There are different rules of thought of how to approach treatment, it is extremely difficult to find which one is going to work the best for each patient it really pretty much depends on how long it has gone undiagnosed - the long the time, the longer the treatment

Sometimes I think they just through the tick away - I know out here they don't even send the tick in any longer since they think that it is rare to get it.

I met a nurse practitioner out here and of coarse I had to bring it up as to why they don’t investigate it when a person some symptoms - her response was that they are told that they do not have the nor money to deal with it - needless to say - I was not impressed and I will just leave it there.

One thing that happens by the time you come down with any of the symptoms you may not even remembered that you were bitten – and the sequence of symptoms can happen in such a way that you would not put the two together. Sign the Petition

Yes - there is Lyme in California


PLACER COUNTY (CBS13) – Placer County health officials are warning residents to be cautious after several ticks have tested positive for Lyme Disease in the county.

Health officials say eight tick samples have tested positive for the disease which can cause fever, headache, fatigue and a rash. If left untreated, Lyme disease can affect the joints, hearts and nervous system. Although most people associate tick and Lyme disease with summer months, there has been a population increase since the late fall in Placer County.

“We are concerned that with the milder winter we have been experiencing, a lot of folks will be taking the opportunity to engage in outdoor activities, such as hiking in tick habitat, and potentially putting themselves at risk for tick-borne disease,” said Joel Buettner, General Manager of the Placer Mosquito and Vector Control District.

The District advises residents who may be working or recreating in tick habitat to exercise caution and implement the following tick-borne prevention strategies:
• Wear long pants and long-sleeved shirts. Tuck pant legs into boots or socks and tuck shirts into pants.
• Wear light-colored clothing so ticks can be easily seen.
• Apply a repellent, such as DEET, registered for use against ticks. Always follow directions on the container and be careful when applying to children. Before entering tick habitat, permethrin spray may be applied to clothing to kill ticks.
• Stay in the middle of the trail. Avoid trail margins, brush and grassy areas.
• Inspect yourself frequently for ticks while in tick habitats. Once out of tick habitat, thoroughly check your entire body for ticks up to three days after being in tick areas. Parents should examine their children, especially on the scalp, hairline and skin folds.

For more information on ticks in Placer County, contact the Placer Mosquito and Vector Control District at (888) 768-2343 or visit www.placermosquito.org. View Article

2012 Update

To be honest with you - it was an incredible battle to get where I am now.

I approached it as war and not to let up, I thought I would never recover and that it was the end of my world, my life and career. My decision was to go after this full throttle and made the decision that nothing will have the best of me. When possible I was teaching even with a pic-line due to how expensive the treatment is for this disease.

I am in remission - but it is always on my mind and very aware, I don't forget where I have been and hope to share the journey with others in hopes that it can help just one other person. There were times where I thought -God- if I was in a accident or some other event, I just didn't have the energy to pull through it, the fighting takes it's toll. I have always tried to stay positive laughing at the craziness, and the difficulty (still lots and lots of tears and how hard ridiculously hard the fight is to get the right treatment, I even the lab tech that had me in tears because she thought the testing I was having was not necessary - you know what, that is not her job and she was only a tech not a doctor.)

If possible you truly need an advocate but someone that truly understands the disease but how do you find one - so in reality your have to find own way through and it is not easy.

I came to a point where I thought I am done with this disease and "I am not my disease" and not to fall into the victim role which is easy to do after fighting for so long and so hard it has been almost 2 years now and I am doing great, I am making plans for the future and making commitments years in advance and have decided if I end up wit any problems I will deal with the then and not to live in fear.

So many people are afraid to say that they have this disease I am not sure what anyone is afraid about - being labeled what? and I think that is part of the problem because many people still think it is only an east coast problem.

Symptoms - You name it I had it, along with the co-infection of babesia I could have easily listened to the main stream doctors and turned my life over to them and if I did I would not be where I am now.

As far as my Bells Palsy it's going on 5 years years I still try to isolate my muscles and work with the occasionally - it's about 95% better if you didn't know me you would think that is what I always looked like - but alas it is not, I feel fortunate to have what I have and it is pretty darn good. Remember if you are only consider about your face there is always someone else that has it worse.

Nothing about this disease is easy. I wish you all the best and I am here

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