Sunday, September 20, 2009

Lyme, the silent taker of life, hope, money and so much more...

It's curious to me, the sustained interest in imaginary vampires, when we have real ones right here among us reeking all kinds of havoc. There are the emotional vampires, which most of us have run into, as they are not in short supply. You know, the ones ... after you spend a half an hour with them you feel like someone has sucked all your energy, and you're left feeling exhausted and slightly depressed? Yea, you know the ones. But there are other more literal vampires among us. And they are tiny, not as easily noticed. Like the imaginary ones, they are stealthy and sneaky. They are rarely seen, and they not only take your blood, they change your entire life.

If it were just blood, I'd gladly sacrifice gallons of my blood to the tick Gods and give them the nourishment they crave. If only it would ensure a fair trade agreement, my blood for their nourishment, but oh no... It's not like sacrificing a chicken for a good crop next year. Not even close.For many, much more than their blood is sucked... Every aspect of their life is: money, time, energy, health. relationships, hope and faith. This is what you get in return for nourishing these bastards. I'm talking about the Deer Tick. Not very sexy, is she? Her actual size is about the size of a flea... sometimes smaller.

Deer ticks are the most known carriers of Lyme disease bacteria, however, this and other similar bacteria have been found in many other species of tick as well. Also, because of these other harmful bacteria that are thought to be carried by ALL ticks, if you get bitten, you should keep the tick (if possible) and go to a LYME LITERATE PHYSICIAN IMMEDIATELY. I cannot stress this enough. You may want to try your regular physician, but don't. Chances are your GP follows the guidelines set by the IDSA (Infectious Disease Society of America) and these guidelines can kill you.

The raging debate over diagnosis and treatment protocols is very very ugly. It involves the ISDA, insurance companies (surprise surprise) and the ignorance/compliance within medical community. I won't get into all that is going on because A) it is too much B) it will overwhelm you and C) It will likely make me sound like an insane and angry elf. It is akin to trying to tell the staff at at an insane asylum that "really, I'm NOT crazy!" What I will do is provide a couple of links so that you can investigate this yourself:
The Lyme Community
Politics of Lyme (This is what I wish I had written! It's beautiful)

This should be enough to get you started on the road to understanding how convoluted this whole issue has become. To make matters even more confusing, Lyme really should be diagnosed by a Lyme Literate physician because the testing alone, even the good ones are not always enough. It is diagnosed by the use of testing AND more importantly symptoms. Many people who go to their doctors with undiagnosed Lyme because they are having cognitive problems, aches and pains, joint pain, headaches, etc... are given the usual battery of tests and told there is nothing wrong with them. And if they keep coming in for either the same problems or others that should arise, many times they are told they should seek psychiatric treatment because there is nothing physically wrong with them. That is what a girl from Orlando was told who was having FULL ON seizures and could NOT walk or talk. She just "needs some attention"... sigh. She was one of the feature threads in the new expose documentary Under Our Skin ~EVERYBODY NEEDS to see this movie. If not the movie, then at the very least this clip/link (above).

The doctors in this movie are real. One of them helped me develop my own Lyme treatment plan through his sharing of information, Advanced Topics in Lyme Disease. He was railroaded into early retirement because he just couldn't take the constant heat. Another of the doctors I've had personal experience with is Dr. Jones. He is a beautiful, generous and loving soul. He is the foremost Lyme Pediatrician in the country, and possibly the world. You would never know it from his demeanor or how he runs his practice. The reason we'd called Dr Jones was because I had just been diagnosed with Lyme and was still nursing my son. I was scared to death that it could be passed to through the milk. We explained to Dr. Jones that we could not afford to fly out to Connecticut for an appointment, so he agreed to have phone consults with us. He basically guided us through the process of what our options would be if our son tested positive, and what to look for symptomatically since he was still just an infant. He also answered ALL of our questions, but mostly, he calmed our nerves and gave us reassurance that there are people out there treating this correctly. A little side note... I had been off my anti depressant meds for quite some time at this point, so to say that I was big fat mess over this was an understatement. I basically freaked on the poor man, and still , he treated us with nothing but the utmost patience, care, humor and respect. He understood and was THERE for us, and we'd never even met the guy! He has been in legal conflict for over 4 years now due to some woman's asshole ex husband who did not want to pay for his share of his own children's treatment bills...

What is so fucked up about this, is not only that these brilliant caring doctors are being railroaded for helping people and bucking the system, but also the thousands of people (and especially CHILDREN) who had been suffering and dying before having been treated by these men, are just S.O.L. They are just fucked. I know how hard it was for these families to find these courageous men in the first place, and now they are having to start the hunt to keep their kids or themselves alive all over again because of greed ... It is more than shameful. We are going to have to invent a new adjective for the people and institutions behind this kind of evil folks.

If you know anyone with a strange or rare neurological disease or someone who does not have an "age appropriate" condition please send them to a Lyme Literate physician. By not having an age appropriate condition, I mean a child or young adult with rheumatoid arthritis, Parkinson's, ALS (Lou Garrik's disease), Chronic fatigue, Fibromyalgia to name just a few. If you cannot afford to travel to a Lyme literate physician, then at least get the proper testing kit and bring it to your doctor's office or a lab in your area. All it takes is getting the blood drawn. If you go that route, the tricky part is getting the results read properly. If you are going to a doctor who is not Lyme literate, he/she may not have the proper training and experience to decipher the test results accurately. However, you may be able to send your results to someone who is an expert. I'm not sure, but it may be possible to fax your results to a Lyme doctors office or even a lab to possibly get the results translated for you. (Again, I'm not sure about this, but it may be worth a try. Since it is not a diagnosis or medical opinion, just an expert reading of the results, you may find someone who will agree to read it for you.) This is the way you have to start thinking if you even suspect you have Lyme... creatively.

Other links for credible Lyme information:
Lyme Info
Lyme Bytes (this is the a testing group)
CT Lyme Disease
Lyme Disease Association, Inc.
Lyme Disease Network

I am going to be posting more about my own personal experience with Lyme disease. You will be amazed at how typical yet scary and frustrating it is. I'm trying to do my part now to raise awareness because had I not run into people who were doing the same, I don't know where I'd be.. or my family for that matter. I was incredibly lucky and we still spent and continue to spend a fortune on doctors and supplements... If not for good friends and good strangers, who are now friends... I may have very well been dead instead of writing this post. Thank you to the Hand family, thank you to Mary Moon, Lisa Doyle-Torrey, Sandi Lanford, and my medical practitioners who shall remain nameless here for obvious reasons. Thanks to you all for your caring, wisdom and diligence. I am still here and my son still has his mother and I am in pretty good health right now.

Thank you is not enough, thank you and eternal blessings.


Maggie May said...

What an awesome, information packed, passionate post. I am familiar with the ravages of Lyme. When I was going through my choronic pain and various other symptoms including debilitating fatigue, I insisted on being tested for Lyme after reading a bit about it and how it masquerades as other illnesses. Thank you, keep sharing.

Ms. Moon said...

Good post, Ms. Fleur. I'm glad you're talking about it. Get the word out.

Petit fleur said...

Thanks Maggie and Ms Moon, and thank you for stopping in.

Please feel free to link this post or any other links it contains or any portion of it. The more people spreading the news the better. You guys have way more traffic than I... and rightfully so.

Have a great week ladies.
xo pf

erin said...

Thanks for sharing all this info. I don't and didn't know anything about this beforehand. Very compelling.

Dexter Dama said...

This is a post with a punch! Thanks for sharing about this and supporting the doctors who have stayed on their leading edges despite the push-back from the rest of mainstream medicine.

And, she IS NOT very sexy, I'd have to concur. I hope getting the word out gives you great energy! I see you have more people following your blog! I'm going to go check out the documentary....take care!

Dexter Dama said...

This is a post with a punch! Thanks for sharing about this and supporting the doctors who have stayed on their leading edges despite the push-back from the rest of mainstream medicine.

And, she IS NOT very sexy, I'd have to concur. I hope getting the word out gives you great energy! I see you have more people following your blog! I'm going to go check out the documentary....take care!

Petit fleur said...


Thanks for coming by. Just take the info in slowly... otherwise you may pop a coil! It's maddening in every imaginable way.

Petit fleur said...

Hey hey hey DD!

You know, I just have to say this... every time I type that I can't help thinking of DD as in the bra size! I'm such a flake! Ok, now that I've said it, maybe it will go away. ;-)

Yes it does make me feel good to spout about it and to help inform my little corner of the world. I wish I could reach more people, but so be it. That chick on the Ocinus site is phenomenal! Turns out she's a journalist... DOH! It made me feel good to know that I can at least recognize talent of that caliber!

Sexy vampires... I wonder where we human's got that one. I mean natural vampires are bats (I think), spiders, mosquitoes, ticks... YESH! NONE of them sexy... humans, go figure.