Diana: I discovered Veronica Hughes’ blog, completely by accident and was immediately hooked. Not only is she a fantastic writer, she lets us peek into a part of the world normally closed to outsiders. Her posts are usually humorous, but one day she posted an angst-filled story about how Lyme’s Disease has hurt her son. I was so moved, I had to reach out to her and find out more. When Veronica shared her story with me, I knew I must help her reach as many people as possible, so I asked her to guest blog today. Her story is too important to be missed and it just may save your life.
In honor of May being Global Lyme Disease Awareness Month (and Global and U.S. protest month, too) please feel free to pass this post on, reblog it, or share it through twitter, facebook, or other social media. Spread the word and help save lives.
Lyme Disease – The New Global Epidemic
By Veronica Hughes
Lyme disease is now spreading more than four times faster than AIDS worldwide, according to statistics reported by the Center for Disease Control in the USA.
We all know AIDS can kill you, yet the drugs to control HIV are so good nowadays that, with treatment, most AIDS sufferers can enjoy long and active lives. This in no way is meant to minimize the horrendous problems AIDS victims may have to endure, but to make a point:
What happens to people with Lyme disease?
One third of people who catch Lyme disease cannot, currently, be cured, as the CDC describes.
Lyme disease can make you go blind. It can give you Bells palsy, paralyzing your face so you cannot talk properly and your food drools out of your mouth. It can give you a heart arrhythmia, in some cases one serious enough to kill you. It makes many men impotent. It can give you chronic meningitis. It can cause such severe joint damage that you end up in a wheelchair. Lyme can mimic Multiple Sclerosis so well that doctors will see their patients debilitate completely, unable to walk or care for themselves, never knowing they could have been treated. It gives many sufferers severe memory impairment or even mental regression, which can be seen as brain lesions in MRI scans. If women have Lyme disease when they are pregnant, their baby may have brain damage. And unfortunately, this list of ailments isn’t even complete.
Ask anyone with Lyme disease what is the worst thing, though, and they will not mention these things. Think of every different flu you have had in your life, and now try to imagine having all of them at the same time, and try to imagine feeling like that permanently. That is how Lyme disease feels.
So few doctors know how to recognize the signs of Lyme disease that many sufferers go months or years before getting diagnosed. I had Lyme disease for 26 years, and saw over 100 doctors, before being diagnosed by another patient in a doctor’s waiting room.
During that time, I had developed ventricular tachycardia, a heart arrhythmia which sooner or later results in sudden death; in the nick of time I had heart surgery to repair the damage that Lyme had caused. I had suffered a mental regression so severe that for a year, at the age of 19, I was unable to speak or understand the English language. At that time I was also too weak to chew food, so I was spoon fed with pureed food by my mother. My sister carried me to the bathroom when I needed it.
For many years I had such severe intestinal problems that I had diarrhea up to 20 times a day, and developed malnutrition despite eating abundantly; I had bald patches and ended up with a BMI of 15 at one point. I lost the sensation in my feet and to this day I cannot feel them. My thyroid gland is infected and damaged so I have to take thyroid tablets. I have lost my peripheral vision because my optic nerve is damaged.
By the time I was diagnosed, I had given birth to a son, born with congenital Lyme disease. I have spent the last seven years struggling first to find out what was wrong with my baby, and then to get him cured.
Most people know the precautions they should take to avoid the risk of catching AIDS. How can you avoid Lyme disease?
Lyme disease is spread by tick bites, and ticks are spread by animals. They drink the blood of mammals, birds, reptiles and amphibians, so if there are animals of any kind where you live, there will be ticks. Contrary to the misguided opinions of governments in Australia and Texas among others, there is no region of this earth where Lyme disease does not exist; Lyme-bearing ticks have even been found on penguins in Antarctica.
Check your pet dog or cat for ticks every time it comes back into your house; tick nymphs as small as a poppy seed can spread Lyme disease. Completely cover your legs and feet any time you go into the countryside for a walk. Spray your skin and your clothes with insect repellant containing at least 40% DEET if you go camping, and remember to reapply it every 4 hours.
Bear in mind there are very likely some ticks in your own back garden. Tick bites are painless, so you will not know you have a tick hanging off you until you actually see it.
If you find a tick on your body, be very careful not to squeeze it or apply any substance to it, as this will inject blood and bacteria from its previous meals into your own blood stream. Use tweezers to grip its feeding parts next to your skin and lift it out without twisting, then clean the puncture with alcohol or iodine.
Stick the tick onto paper with some sticky tape, or in a sealed vial with a blade of grass, and send it to a lab to be analyzed; this is the most reliable way to find out if you have been injected with Lyme-causing bacteria.
What can you do if you have caught Lyme disease?
If treated within six weeks, with a two-month course of the antibiotic doxycycline, it can often be cured: beyond this window of opportunity, it becomes disseminated around the body and has to be attacked with a cocktail of antibiotics for months or years. An estimated two-thirds of people with disseminated lyme disease can still be cured if given antibiotics for long enough.
Lyme disease can interfere with your body’s antibodies, so you periodically lose your immunity to it when the infection is particularly severe. Many doctors are unaware of this and falsely believe that a negative Lyme disease test – one which finds no antibodies – proves you don’t have Lyme disease. This belief persists despite CDC advice that Lyme disease should be diagnosed ‘based on signs and symptoms’ alone if necessary and that laboratory tests are at best ‘helpful, if used correctly’.
Unfortunately, woefully few doctors know how to recognise Lyme disease in their patients. During my 26 years with undiagnosed lyme disease, I was variously misdiagnosed with Crohn’s disease, epilepsy, ulcerative colitis, chronic fatigue syndrome, depression, Reynaud’s syndrome, and many, many times told I was “just suffering from stress” and there was nothing wrong with me. I was never tested for Lyme disease.
Many doctors, when a Lyme test is positive, falsely believe 8 weeks of doxycycline is sufficient to cure it even in the disseminated phase.
Some doctors even believe your body’s own immune system can beat Lyme disease by itself, with no treatment at all. To find yourself a doctor, anywhere in the world, who keeps up with the latest Lyme disease research, contact www.ILADS.org, which organises a global Lyme disease conference each year and publishes general information and new Lyme disease research online.
The patient who told me about Lyme disease recommended a doctor who had cured a friend of hers. During my long treatment, I have spent the last 4 years reading all the research I can on Lyme disease. With such outdated knowledge and even apathy prevalent in the medical community, every Lyme disease patient has to educate himself and take personal responsibility for ensuring he is getting the most up-to-date standard of treatment.
Lyme disease was first described and named as an illness in the 1980’s and knowledge of it is still growing from a small base. Sadly, most doctors’ knowledge of Lyme disease is decades out of date. They believe it is a very rare illness, so they don’t make the effort to keep abreast of new research. The IDSA (Infectious Disease Society of America) composed its treatment guidelines in 2006 and has not updated them in response to any of the new research published since then.
By the time the majority of medical professionals catch up with the trend, we may have a global Lyme disease epidemic on our hands. Try not to be a part of it.
For medical professionals interested in catching up with the latest methods of diagnosing and treating Lyme disease, the one-day ILADS Lyme Disease Basics Course is to be held in San Diego, October 2013.
Diana: Thank you Veronica for trying to educate so many people about this terrible disease. And thank you for all the intensive linking so that our readers can check out the statistics for themselves and perhaps get their own physicians to take this more seriously. One more link from me: The Canadian Lyme Disease Foundation which has a lot of great information.
Again, readers, both Veronica and I give you permission to reblog and share this post. Please spread the word and help prevent more suffering.