I think that controversy over where Lyme is and is not is directly related to the bigger conflict over the disease, primarily in the US. The Australians are just following our disastrous lead in denying and diminishing this horrific disease.
We still have "authorities" here in the US saying that Lyme just isn't in certain states because there aren't enough of the "right" ticks there to cause it. A classic example is the Lone Star tick, which isn't an Ixodes tick, the "official" carrier of Lyme. Never mind the hundreds, probably thousands of people with Lyme Disease in the South and MidWest who got it from Lone Star ticks. The other example is insisting that the CDC surveillance criteria excludes Lyme when it is negative, which completely defies the known science of Lyme testing.
There are many ridiculous stories here of medical "experts" and government bureauocrats making statements that anyone with knowledge of the situation would immediately recognize as untrue, distorted, or just plain false. I believe their desire to protect the status quo and avoid a health scandal or panic is greater than their desire to protect and restore the health of the people they claim to serve. And besides, who could possibly say to a patient suffering with Lyme symptoms and positive tests for Lyme antibodies that, "You don't have Lyme," especially when that person begins to improve with antibiotics?
I cannot fathom why Australian officials continue to cling to their belief that there is no Lyme Disease (Borreliosis) in Oz. Actually, because the disease presentation is different than North America and Europe (as per Dr. Peter Mayne, Dec. 2011), it should probably be called Australian Lyme or Australian Borreliosis. I have it. I am a native Californian, but I got my Neuroborreliosis and Bartonella while on vacation in Queensland nearly 7 years ago. I was diagnosed after 6 years and am still on antibiotics. I have no doubt whatsoever that I have it.
The best answer I can come up with to your question was in an Australian article I read on the subject, where an anonymous health service employee told the reporter that his boss (a NSW health system executive) was embarrased and defensive by direct questions about Lyme Disease policy (or lack thereof), because the boss knew absolutely nothing about Lyme Disease and didn't want to admit it.
It is inexcusable that the health service did nothing to educate doctors about the symptoms of Lyme and how to diagnose and treat it for Australians who brought the disease home from overseas. They have since acknowledged these patients even as they have ignored their illnesses. I would think it would be a very simple study to collect ticks in areas where patients report being bit and test those ticks for Lyme and known coinfections. Dr. Mayne has already confirmed at least two species of Borrelia in Oz by culture in multiple patients. I am very curious as to how long they can keep their heads in the sand.
I can relate to your frustration at both the disease and "the system" that has failed us. The number one priority for any patient is getting better, whether that is to manage the disease as best as possible or to go for all out war with IV antibiotics. I still struggle with disbelief at the circumstances, anger, sadness, and frustration. Sometimes I just have to set it aside for a while when I realize I am too stressed out. Everybody's experience is different, so there are no cookie cutter answers.
This is a great place to get support, ask questions, and even to express opinions among patients. I hope you'll stick around.
Well, let's face it cancer is cancer, lyme is lyme. Do you suffer from Lyme disease?
I mean that by saying, no matter where you get a disease the symptoms are there and it doesn't matter where you got it from, you gather?
Yes....this is just hotly debated on some threads here. I have come for some support, understanding and to have some questions answered along the way. I don't really quite feel up to sticking my head out out the chopping block at the moment. Battling with enough to add that to it. Thanks for your response Missy. :-)
Well, have you tried teasel tincture? I met a woman online who had Lyme and after I found her a place near by her home town she took it for 6 months and is functioning quite well. I'm here to support you!
I haven't heard of it. Can you tell me some more please?
Check this site out, this is who I went through....
A most insightful and helpful response.
I firmly agree with testing ticks in known infected areas. I could take you to the exact spot where I picked up my tick that remained engorged on me for a week 20+ years ago and to the exact location where my children picked up theirs.
I know that my LLMD uses the same testing laboratory as Dr Mayne and I signed the paperwork to have my results added to the research that they are doing.
The most frustrating part for me is watching my kids struggle through the education system with so little care or understanding. So frustrating!!!! I am actually going to go and study health care promotion because this is so going to need a lot of work in the very near future.
I hope you continue to improve.
Have you considered home schooling your children until they are better? I know how hard thinking and memory were for me when I had Lyme and babesia. There was nothing anyone could have done to cause my mental processes to absorb data and think things through until I was well again -- no teaching approaches that would have overcome the effects of the illness.
My best description of how I felt was a bad case of the flu plus a bad hangover at the same time, but everyone is different, because the effects of the various co-infections and individual body chemistry and immune system activity produce such variable results. I think that's part of what confuses the medical profession so profoundly -- never mind how hard it is on the patients themselves. There was nothing anyone could have done to improve my mental functioning and memory until I had been treated.
Thus I am wondering if the problem is simply the disease effects and not the teachers -- and certainly not your children. Just a thought.
here is a map from the WHO... i think Lyme or some strain of spriochete is everywhere.
when i told my Dr. i grew up in the country in western NJ, 1960's and 1970's and had tons of tick bites (mom would pick them out of out scalp all the time as we played in the fields and tall grasses had dogs and lots of cats and horses!) he said that was before Lyme...
like it just started in CT? it has been around forever!
I can't believe your doctor is that ill informed!! I suppose he would refuse to diagnose anyone who got the disease before 1975, as it simply didn't exist until A.Steere wrote a paper about it.
In the meantime, scientists found borrelia burgdorferi in some CT museum mice from the late 1800's. There is a woman in my area who got sick as a 4 year old during a summer in CT... over 50 years before she was diagnosed! (I think she had it longer than anyone else I've ever heard of.)
The woman who founded the California Lyme Disease Association, now known as lymedisease.org, was a back-to-the-land hippie in the 60's. She and her family moved up north of San Francisco and lived in a teepee, cooking outside, and letting the kids run all over. Eventually, they were all sick. Yup. There was Lyme in California in the 1960's! We'll never know how many people have actually had it.
Homeschooling is the solution.
We are doing a form of it atm. He only has to attend school one day a to hand in his work and collect the next weeks worth. The only problem is he is barely even able to concentrate long enough that one day to get down what he needs to so he actually has work for the week. He has been formally diagnosed with Auditory processing disorder, visual processing disorder, Irlens Syndome and Dyslexia......all of which the recommendations in the reports from the behavioural optomertrist, audiologist, speech pathologist and school sychologist have been ignored. In fact they haven't even been passed onto his teachers because the Principal of the school didn't want to "overwhelm" her teachers.....the poor dears.
Still, I suppose I shouldn't complain. The principal at the last school completely lost all those reports, put him in the wrong class and then wanted to know after a full term why he wasn't performing to standard. So the 4 days at home one day at school is a great program in theory but add Lyme to the mix...and just like the rest of life becomes practically impossible.
I have seriously considered going the whole hog and home schooling outright. Then I have to go through the stress of applying for approval (from the Government), setting curriculum, recording, reporting, etc to maintain that approval....from a government who doesn't believe we even have Lyme disease.
Hence, we arrive at the mountain once again, scratching our heads at the best way to climb over it. ##waves her arm frantically signalling for the overhead helicopter to pick her up and take her to the top.....oh if it was that simple hey!
Aussie, Aussie, Aussie, Oiy, Oiy...oh boy!!!!!!
Good for you!
I just now went digging for the official Australia position on Lyme and found a govt website that is a charming combination of naievete and ignorance. a few excerpts below with my smarty pants comments in [square brackets]:
How is Lyme disease spread?
Lyme disease is transmitted following the bite of a tick that is infected with the Borrelia bacterium.
Only some species of ticks are capable of being infected by the Borrelia bacteria and only these infected ticks can pass the infection on to humans. This group of ticks is found in Asia, Europe and North America, but not in Australia. [Riiiight .....]
Ticks with Borrelia infection live in temperate forested areas of northern Asia and Europe (especially central and eastern Europe) and the United States (especially north-eastern, north central and Pacific coastal USA).
In the 1990s, 12,000 ticks were collected from different parts of NSW and were tested for Borrelia bacteria. No evidence of Borrelia infection could be found in any of the ticks collected. [One wonders what testing method they were using.]
In April 2011, NSW Health convened an expert panel with expertise in public health, epidemiology, infectious diseases, rickettsial diseases and entomology to provide advice on the current risk of Lyme disease in NSW. [Oh save us from the 'experts!] The panel concluded that although locally-acquired Lyme disease cannot be ruled out, there is little evidence that it occurs in Australia [you don't look, you don't find]. The panel also noted that there was a continuing risk of overseas-acquired Lyme disease being imported into NSW. [then.... it IS found in Australia!]
Lyme disease is not spread from person to person.
How is Lyme disease diagnosed?
Lyme disease is diagnosed based on symptoms, physical findings (e.g., a characteristic rash), and the possibility of exposure to infected ticks. [Okay!] Laboratory testing is helpful in the later stages of disease.
Diagnosis of any infectious disease requires a combination of clinical experience and assessment by the doctor and understanding of the lab tests and their limitations. [Absolutely!] Laboratory tests are rarely definitive and all tests have a proportion of results which are false positive (test indicates disease in someone without the disease) and false negative (test indicates that there is no disease in someone with the disease). [Well said!] When tests are done in places where a disease is rare or absent (for example, Lyme disease in Australia), many positive tests will be falsely positive. [Faulty logic, basing the premise on the conclusion -- we don't have Lyme in Australia, therefore any positive tests are erroneous.]
The tests to diagnose Lyme disease are technically complex and require specialist expertise. It is important for people who want to be tested to make sure the laboratory that performs the test has accreditation with the National Association of Testing Authorities (NATA).
Lyme disease is most commonly diagnosed by a screening test called ELISA and this is then confirmed using a western blot test. Both of these tests detect antibodies that are produced by the immune system of someone with Lyme disease.
Lyme disease can also be diagnosed by testing a sample of the skin lesion by nucleic acid testing (eg PCR) or culture. (See testing advise for clinicians for more information). [Points to them for even mentioning PCR testing, which is sniffed at by US docs who are not LLMDs]
Occasionally, tests performed in Australia for Lyme disease show evidence of an infection. [Imagine that!] When these cases have been followed up in the past, the cases have been found to have acquired the infection while overseas. [But if you're categorizing positive Lyme tests as false, you're lowering the incidence of infection to nil. And, once a disease arrives in a previously 'clean' area, it tends to spread.]
Tests for Lyme disease should only be done by laboratories that have current accreditation with National Association of Testing Authorities (NATA). [That would be the group that says since there's no Lyme in Australia, any positives are false or imported from elsewhere.]
How is Lyme disease treated?
Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics [based on what theory?] ... [and it goes on]
So, I DO see what you are up against, Robyn.
Not to pile another chore onto you, but could you and other Lyme parents go together to start a ... group home school (?) for your children? Something to ease the burden on each of you by making it a group effort. Keep it small, so that the administrative burden doesn't become overwhelming, or perhaps have a league of parents who are separately home schooling, but go together and hire a [part time] advisor/administrator who can advise on how best to run things, so that there is some level of support for all the parents...since you have your hands full already. Just a thought. You may also find resources online who are located in the US that could share information on home schooling or small-group-schooling children with Lyme. I haven't looked into it here in the US, so just throwing out ideas (like you need more work ... but maybe it would help in the long run by sharing the burden among many.)
Bless your heart, you are dealing with a lot -- and your children are fortunate to have such a dedicated, understanding and loving mother.
We're always hanging around here if we can help ... it's a good place to vent and ponder. Be sure to take care of yourself too!
PS You say above: "The principal at the last school completely lost all those reports ..."
I began keeping a large binder at home of all test results, notes of dr appointments and comments made, etc., because my memory was SO bad I couldn't remember anything .... and it became a valuable archive for me. Even now I look back through it and find data points I have forgotten or didn't seem significant at the time that fills in a bit more of the picture for me.
I find that doc's offices are lazy about making copies later, and so I always was sure to get copies of current tests while AT the doc's office, so that the staff didn't decide what to give me later or not. What seems insignificant in a test now may, with other later data points, lead a wise doc to important insights -- and Lyme and the co-infections seem to hit everyone's immune system differently and with different symptoms.
Take care -- your children are so lucky to have you.
Regarding this quote from the Australian Government:
Lyme disease is transmitted following the bite of a tick that is infected with the Borrelia bacterium.
Only some species of ticks are capable of being infected by the Borrelia bacteria and only these infected ticks can pass the infection on to humans. This group of ticks is found in Asia, Europe and North America, but not in Australia.
...This is laughable. The "official" statements in the US say that only Ixodes ticks carry the various species of Borrelia that make humans sick.
(This has been disputed in the U.S. where the Lone Star tick has been proven to carry Borrelia Burgdorferi. The Lone Star tick is not an Ixodes tick, and so far, the Gov't and the IDSA have ignored the numerous reports of Lyme from Lone Star tick bites and the lab tested Borrelia positive Lone Star ticks.)
So even if you stick with the "official" belief that only Ixodes ticks can transmit it to humans, Australia has its own Ixodes tick, the Ixodes Holocyclus!! It is a unique species to Australia, and it's known as the paralysis tick.
So if a variety of Ixodes ticks around the world carry Lyme Disease, then how in the world could any reasonable person say that the Australian Ixodes tick is somehow immune to it?
Thanks again for your encouragement and advice Jackie. Good advice about copies of reports and tests.
Well that is very interesting because my early engorged tick bite was from the paralysis tick. I remember distinctly because my Mum FREAKED because I had been spiking a 40.5 degree Celsius fever for a week.
That fever was probably the onset of Lyme Disease. I spiked a fever, too, along with terrible malaise, chills, and complete hoarseness. I could not remember ever feeling that sick in my adult life. I took a week of penicillin (not knowing what I had), and felt much better. I recovered within a few days and forgot about it. Even if I had gone to an Australian doctor, they would have had no idea what it was either.
That's what I am thinking too. It was from that point on the all my weird undiagnosable medical things started happening. The dr who removed the tick did it by digging it out with a sterilized darning needle. No testing for ANY tick born diseases and certainly no anti-biotics. So glad has come a bit further since then.
Should have read "So glad the medical community has come a bit further since then." Brain-fog......no need to say anymore. Ha ha..just gotta laugh!