The sad fact of Lyme is that many patients go undiagnosed for years – they seek help from joint consultants, infectious disease specialists, neurologists, ophthalmologists, heart specialists and psychiatrists to find years later the cause of their ills being just the bite of a tiny tick, so small that is often difficult to see. Once a patient has received diagnosis with this dreadful disease they then face the battle between two methods of treatments – the Infectious Disease Society of America (IDSA) who believe that Lyme is only evident in the acute (not chronic) form, is easy to spot and even easier to treat. The International Lyme and Associated Diseases Society (ILADS) who believe that Lyme is in fact much harder to diagnose, persists in a chronic form and is very difficult to treat (unless it has been caught in the early stage of disease). This persistence as documented in many studies is due to the survival capabilities of the bacteria changing from spirochete form which can cross the blood brain barrier and burrow into joints and tissues and the added ability for it to morph into cyst forms and biolfilm masses, which are cell wall deficient and therefore unable to be targetted by many types of antibiotics. To learn more about how the bacteria can cause persistence of infection and change form, as well as the possibility of seronegative Lyme (due to the ability to evade the immune system) check out the following articles:
Patients are often left in the middle of this two-sided conflict or made to feel that it is ‘all in their head’ when they have a very debilitating, persistent disease. Here with kind permission I reproduce a story from a patient and Lyme disease advocate in Germany. Her story was used in a worldwide campaign called ‘My Lyme Disease is NOT the IDSA Lyme Disease’.
Viewing Lyme disease from a Patient’s Perspective..
My Lyme Disease is NOT the IDSA Lyme Disease
– The “bad” influences and the bitter consequences of IDSA’s guidelines in Germany
by Christine Anne Hellmund on Friday, January 7, 2011 at 7:57pm
My name is Tini.
37 years old, happily married, mother of two boys.
Born and raised in Germany. English is not my native language, so please excuse any mistakes…
I have been always an active person, who loves to be outdoors.
Just married, successful entrepreneur, I got very ill almost over night, short after I gave birth to my second son in the year 2004.
My first symptoms were profound fatigue, seizures, backpain, nightsweats, increasing horrible muscle and joint pain in my entire body, concentration problems, difficulties in walking, talking, concentrating, low fever, migraines, dizziness, nausea, insomnia, nightmares, memory loss and they multiplied in numbers during the next months…I was just a list of symptoms. I have never been this sick before.
What to do? Of course – Go and take doctor’s advice. Long story short in the next upcoming three years 2004-2007, my husband brought me to all kind of medical experts.
I saw over 40 Medical Practioners, alternative and integrative Therapists.
Hhmm. Lupus erythematodes, again Endometriosis, Multiple Sclerosis, Spinal Tumor…Cancer? All was under suspect, no diagnosis was confirming the suspected diagnoses. Chronic Fatigue Syndrome, Chronic Pain Syndrome, Chronic Inflammation was then diagnosed.
What? Excuse me.
I could not work anymore, not leave the house…I was to sick to get up. As I mentioned I had my own sucessfull business. What a nightmare. I wanted to get back, just to get better, but I got worse. I have just been a young mother, a young wife, my Life was just perfect and I was fighting every day to get better, with all my positive Thinking.
End of 2005 I was on morphine, after all kind of painkillers could bring no relief!
Hell, no, now I lost a lot of weight due vomiting on and on and I was to weak to walk now, in wheelchair still in pain on morphine!
I became soon parasthesia, beginning in my feet, crawling slowly upwards in my entire extremities and I was even more in severe pain, among so many other strange symptoms.
I still kicked my butt again and again, as a mother and as a wife I had even more reason not to give up and to find out what the cause of the destruction of my Body and Brain was??
All the sudden, in summer 2007 a doctor called me up in the evening hours and told me:
“You tested highly positive for Lyme Disease. Go immediately to the hospital, you need IV Antibiotics, at least up to 4 weeks.”
“Hold on a second”, I said. “All these symptoms from what a bite of a tiny tick??
Never ever! ”
Well, to error is human right? At this time I had no clue, what Lyme exactly was.
He responded: “Oh yes, everything can be related to that late diagnosed bite of a tiny tick. Take it serious! Go to the hospital”
Alright, I did and on the next day, I went to the hospital. I thought NOW you will get finally a treatment, the mystery is solved. All will be fine soon.
Well another thing that turned out to be an ongoing medical nightmare.
They did all kind of testing internal and neurologic. Nothing happened. I was to weak to take a shower and why they do not start this antibiotic treatment?
I am now finally diagnosed, after years being undiagnosed. No! It has to be treated, please- I just want my life back.
I called up my husband. Please find out more about this Lyme Disease, I am feeling it is killing me.
We knew nothing. In the next days my trust in those neurological experts seemed to fade away.
Well, my feeling was right, then they said. “You don’t have Lyme!”
There is nothing we can do for you. Oh my gosh. “We did the testing again in our lab: NEGATIVE!”
I said: “Here is my POSITIVE lab result, take a look at it. I am so sick, since years. I have all the symptoms of a severe neurological Lyme Disease for such a long time.
Please I need your medical help. NOW!
“But your spinal fluid is not showing any confirmation”, the Professor said.
“Well, but all the symptoms and no other logic explanation”, I said silent.
He asked did you had a rash or a tick bite reminding?
Well, I had have a lot of ticks in the past. No rash that I could bring in correlation with my condition…
In the end, we decided to leave this hospital, cause we have thought, we will find easily another clinic willing to treat me.
My husband told me that he read during the night, he did intensive research and found thousands of stories like mine.
He found scientific papers on seronegative Lyme Disease and in late stage and very often false negative spinalfluid results.
My husband, friends, family and at this time one doctor had no doubt, I had chronic neurologic Lyme Disease.
I said while leaving: “How many cases of Lyme Disease did you have seen or treated? I am so sure I have chronic Lyme! I will fight for medical treatment! You should read the scientific papers…”
Well he, the prof- was one of the best man, that I should met in the next upcoming years. He was confused! He was listening and thinking.
Last but not least he was a reader.
A few hours later in the evening the professor called me up at home and said: “You were right. You are infected with Lyme, my testing is inaccurate!!! I did my research on the Internet and found really scientific explanations for your false negative lab result. ”
It takes not much research and investigations to figure out, over books, medical publications, literature or the internet, that Lyme Disease is a highly complex and dangerous disease. Millions out there are misunderstood, misdiagnosed or mistreated.
You will soon find out that the medical community is debating and there are two groups of so called Lyme Experts.
Who is right?
What matters to me and some brave doctors? It is a fact, people are in horrible pain. It is a fact that the Lyme Spirochete is one of the so called Deadly Dozen Diseases.
I would not be living anymore, without Antibiotics.
No one is talking about the risk of the use of Psychopharmaca, antidepressions and others.
Fact is, there is no explanation in the medical community on the cause of many devastating medical conditions.
Think it is not illegal yet!
In history medical errors always have been splitting communities. The heroes of modern medicine had no fun or good reputation during their Lifetimes. Sometimes it took centuries to change the opinions on medical facts.
One thing is for sure: Lyme is real!
To visit Christine’s website go to: DEUTSCHEN LYME BORRELIOSE HILFE
For an amazing list of files relating to Long Term Inflammation in Lyme & Defense Mechanisms of Borrelia bacteria (leading to chronic infection) please click here.