I thank you for taking time to read this. I am a 38 yr old Lyme disease sufferer, misdiagnosed for at least -10 yrs. I am an RN, married to a great MD,I pushed until I pretty much believed I was 'crazy' like the rest of us are told, and luckily had the will to press on and find out the answers for myself..All on my own.

Unfortunately, due to private interests and outside ties on the part of the IDSA panel members, millions of people have suffered . This disease is fatal. This disease is criminal. The education system for mainstream physician is flawed, and doctors don't even know what the signs are. It is the other 'great imitator' like syphyllis, leaves no organ unturned. Many MANY times this illness is misdiagnosed as CFS FMS ALS MS, Bipolar, Depression, hyteria, so many, it's shameful.

I have missed 9 yrs of my children's school events, play dates, birthday parties, Christmas dinners, etc. I have lived in bed for the last year and a half.

Even my husband still doesn't BELIEVE in chronic/late Lyme. because those who educated him, those who publish in medical journals, are all in someone's pocket. There is no place for a combination of medicine and private interests... The laws that allow the patenting of organsims alone started this path of destruction. So many have died, and the didn't have to...

Heartbreaking. I have access to fabulous care and know hundreds of doctors personally, yet , still, it shows you how this disease is terribly misunderstood and such a SHAME. Being the great 'imitator', I have had a myriad of symptoms/signs, a month of this, a month of something completely unrelated. You, as a health care professional, 'know' what the 'easy' answer is, physicians throw their hands up and usually send you elsewhere, possibly (usually) putting you on an antidepressant. Honestly, they have NO RIGHT or EXPERTISE to do that until ALL OTHER possibilites are ruled out, run tests, more tests if you have to, don't just say we are depressed, yes we are, but which came first , the chicken or the egg? Depression is a result.


I have two little boys,  I found the tick on me the year I was pregnant with my first, so, they need to be checked. I have been on  PO antibiotics/had a terrible reaction to Biaxin-stayed awake/paranoid for 16 days straight, 15 lbs. of edema/hallucinations, PSVT. Suffered like that while my parents came in from Canada to visit, again, I listened to the 'assumption' that at least the facial burning/thrush/oral lesions were from Malarone (I have not only Lyme but 3 co infections, as well as +mono, no IGG subclass 2/3 -needing IVIG q month,+EBV, allergic to the whole state of Louisiana, many odds against me)I have co ordinated my OWN care, had no advocate but ME, and have given up many times.My gut told me to keep going and that I was NOT better off dead,which many of us think as we see ourselves as 'useless' 'misunderstood' and a 'burden' .

The fight- has just begun.You FINALLY get an answer,PROOF that you are really SICK and you think that maybe you will get some recognition, as you have no energy to do otherwise. Sadly, you have to start 'convincing' others around you and it is consuming, exhausting, frustrating, yet, it's necessary as it's a complete outrage. So sad how things are handled here. I have 'suffered' too much, headaches daily, facial palsy,fever daily, sleep deprivation-<4 hrs a nite for 9 years.Tough with little boys. I am so weak but have no choice as I have no help nor do I have close family.The classic 'well you look good' is told to many of us 'walking dead' people. If they only knew how it felt. I am to have a port surgically implanted and start Rocephin 5x/wk next week, my Lyme MD is 4 hrs away, a Christian man who is WONDERFUL. Little town in North Louisiana.

 I have daily debilitating pain, eye pain, headaches, body aches, fever, bells palsy, shortness of breath, profound fatigue, weakness, dizziness, nausea, blurred vision, mood swings, brain 'fog', fluid retention, increased heart rate, diaphoresis, impaired thermoregulation, the list goes on. Every part of my body has been affected and this has not been fair, didn't have to happen. Due to ignorance and inappropriate testing, I may not get my life back. I may not get out of this bed. I may not see my 5 yr old turn 6. I used to ride, play tennis, never sat down, I was a good RN, and had to quit work a year ago. I am angry. And I have a right to be

.It's tough, as I am normally a good writer, have lots to say, especially since Katrina which was the hum-dinger for my health decline. We are 20 min from New Orleans and it was terrible for my children and I. This story must be told, this disease is fatal and sadly, the ones who are not lucky enough or intelligent enough to even question Lyme or what an MD tells them, well, who knows how many REALLY have it and have died as a result. Being constantly shunned, can truly make you crazy. It also give you a goal, you become driven to make a difference. We will all have that same 'drive' to help others. As Pam Weintraub says in 'Cure Unknown'-- 'Believing that someone doesn't feel physically well gives them the PROFOUND gift of credibility'.Sad for me is that i actually MET the CDC criteria for IGM lyme in May. Yet----was still passed off by one of our best Infectious Disease MDs. They just look at it and say 'I don't know what to do with that'. My goodness. If I could teach them all. Pity.I will. I plan on doing the preceptor ship that ILADS has for healthcare providers, hopefully with Dr. Forester way up in Pineville Louisiana, and, make a difference. I even educated my bug exterminator, anyone who will listen, it all will help. Especially when it's carried by fleas and mosquitos, not just ticks. As Dr. Forester says: '90 percent of your patient's history will be discovered if you LISTEN to them long enough. They will tell you what is wrong with them'. 'IF an illness or syndrome is widespread and debilitating, SEARCH for a CURE', if an answer is unproven but appears logical, PURSUE it.' 'If the treatment is benign, TRY IT, if it doesn't work, NOTHING LOST and if it does GREAT GAIN.' if you try such treatment and it WORKS, your patient will thank you and not care about un-believing colleagues. He or she is WELL.' Dr. Oz- as a nurse, a mother, a wife, a HUMAN BEING, please consider this as we know how you and Oprah can make a positive difference. Unfortunately, sometimes, it takes a great 'show' such as Oprah to make a difference.Which is sort of the theme of how 'egocentric' the 'greatest nation on earth' really is. No, I love the US. I just have a problem with private interests deciding the fate of others. Knowingly, willingly, completely inhumane. Not the 'American way' that is for sure. Being from Canada, where socialized medicine is many times, misunderstood in the USA, we 'aliens' learn the differences in all aspects of life in other countries. At least where I am from, there is no bias, no marketing of big pharma, no outside directors denying or approving medical care. The doctors, can still be just that - doctors. No lawsuits, no bias. I worked as a case manager and I was right there on the front lines and I know the 'ins and outs'. Even who I was,where I worked,as sick as I was,no one would even admit me to the hospital. I eventually kept saying 'why wasn't I worth saving or going the extra mile for?' That's what we as mothers, nurses, humans- do. Naturally. Go the extra mile, keep on questioning. Solve it. You quickly learn how so many are not willing or just simply care not to do the same for you. Such a shame, and just lack of knowledge and sometimes hands tied. So many people could have been cured. So many lives would not have been ruined, marriages ended, jobs lost, etc. I do not know what it's like to 'feel good', nor do my kids know what it's like to have a 'normal' day with mom. They have missed out on that, they are now in school, and I missed out on the younger years, always being sick and misunderstood. I will never get that back. I am still fighting and will do everything I can to make a difference. Not even an animal should endure this treatment nor should they be subject to this never ending suffering. Inhumane, and , as mentioned before, not the 'American way'. You should have a show,, heck a week- you need Pam Weintraub, the Under our Skin director (sorry can't remember name) , Dr. Joe Burrascano, Alan Macdonald (the pioneer of the spirochete research all on his own time- found Lyme in 7/10 alzheimers dna (that's scary my goodness)), Willie Burgdorfer (hope he is still well), Senator Blumenthal who made the unprecidented accusation against the IDSA.Of course, a few of us Lymies. I would be more than willing I am one of those 'looks great she just must want attention'  women. I am desperate, you will hear the same thousands of times.It's the RIGHT THING to do.You can't ignore it. In your hearts, you know you can't.