"I agree that it's important to be aware of the possibility of lyme disease but I have to express great surprise that you saw many neurologists, including at MHNI, and none of them ordered a blood panel to test for lyme and other diseases, metabolic and immune problems, etc. I've been working on an unbreakable headache for nearly seven years now so I've tried nearly everything, and lyme disease was one of the very first things that I was tested for. "
They did. Over and over and over again. But what I didn't know, because I wasn't educated....
THEY NEVER USED THE RIGHT TEST. And if you have been tested, I can 100% guarantee that they did not use the right test on you either.
Also, they will tell you the test is negative, even if bands show, if it does not meet the CDC criteria. However, any bands on the test means further testing needs to be done. BUT... the blot and elisa test should not be used to diagnose lyme. For more reliable results, a lab called Igenex.
Please do research on how inaccurate the testing is, why it is inaccurate and why doctors won't test for lyme the right way. Also watch the trailers for Under our Skin..its a documentary about lyme and the current buzz is it might get nominated for an Oscar.
I have a lot to share about my experience. you can check me out on mdjunction..do a search for my name. read my profile, look at my first diary entry.
I can tell you have I have nothing to sell, I have nothing to gain by telling you all or anyone else for that matter about lyme disease. However, I was in all of your spots. I suffered with 24/7 headache. No medicine worked, I was in MHNI, as well as many local hospitals trying any and all sorts of medicines. Nothing worked. I choose to do research and found out myself I had lyme. I knew I had it, just needed to find a doctor that would listen. I am now 100% headpain free. Yes.. I don't have a headache every day. I never imagined I would be able to live pain free again. But, I am and it's been wonderful.
Also, I stayed friends with 3 people from my 16 day stay at MHNI -
2 year headache lives in IL
5 year headache lives in CT
7 year headache lives in TX
Upon my constant badgering....listened, got tested and ALL THREE HAVE LYME DISEASE AND CO-INFECTIONS. I have individual stories about them as well and am happy to share each the highlights.
Also know that if you are a woman, lyme does transfer to the fetus. My youngest son has lyme disease (he's currently 17 months old) as well as a co-infection called Bartonella. He only has absent seizures as his symptom. However, many children with lyme (undx) have ADD/ADHD, autism, depression/anxiety,etc.
Ask me anything. Join MDjunction...send me messages. Several on the NDPH forum on MDjunction have tested positive after listening to my story and me encouraging them along. Some are open about it, some aren't (for various reasons).
As a matter of fact, I just had a 3 week discussion with a man about his 16 year old daughter and that I knew she had lyme. She's had a headache for just a few months. He fought the idea, didn't want to hear it. Whatever the doctors said is the words of God. I finally convinced him to get the actual lyme report from the hospital (because he never saw it, the neuro told him it was negative). Well, a week later, I get an email, with the actual report attached and right there "lyme antibody test: Positive". Yep, they have now consulted a lyme literate doctor, who inturn has informed him that his daughter does have lyme and a co-infection.
So, please don't discount the idea simply because your doctor told you it waws negative. Do the research. Learn why they tell you this. Read up on the lawsuit against the IDSA for having guidelines that are junk (these are the guidelines your doctors use). Read people's stories about the daily suffering and the years of not getting a dx.
I wish everyone the best of luck finding answers. I will answer any questions you have, so please ask them.
I am a mother of 2- a 5 year old and 1 year old. Woke up with a severe headache on 7/14/08 (6 weeks after my son was born), and shortly after had severe neck pain. Eventually the neck pain decreased in intensity, but the headpain never did. I have had numerous tests and hospitalizations, and have been diagnosed with everything from intractable migranes to psuedo tumor cerebri, and now I am confirmed with LYME DISEASE (because of my insistence to find answers).
As of March 2009... I began treatment for lyme with a PICC line. As of June 2009, I am finally HEAD PAIN FREE and trying to spread the word to as many people as I can and are willing to listen. There is no need to suffer, but there is a need to find the right doctor who will listen and offer treatment.
This is from an article that I will reference at the end....
"So often it is diagnosed as the symptoms that it presents with, such as arthritis, fibromyalgia, chronic fatigue, Bell's Palsy, Parkinson's, Sjogren's, lupus, multiple sclerosis, ALS, ADD, bipolar disorder, anxiety, meningitis o...r IBS. Reading about Sjogren's makes me wonder how many people with that diagnosis have Lyme as the causative agent? .....Finally, the symptoms of Lyme disease are so unpredictable that it is often missed. People who are diagnosed with multiple chemical sensitivity, fibromyalgia, chronic fatigue syndrome, multiple sclerosis or lupus might be interested to pursue the possibility of Lyme disease. Even a disease as serious as amyotrophic lateral sclerosis (Lou Gehrig's disease) can be misdiagnosed when Lyme disease generates similar neurologic symptoms" From: http://www.massagetoday.com/mpacms/mt/article.php?id=14101
Doctors are not God. Take nothing they say as truth over your own instincts. There are answers, it's up to you to educate yourself, take control of your medical care and find answers.