Why the Government is Suppressing the Lyme Disease Epidemic

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Hello, everyone!

I know it's been a long time since I've posted, but so much has happened. First, I was able to go into a remission state...still very tired, still had aches, but there was no difference in if I was on my antibiotic pulse cycle or not -- I was stabilized no matter where I was in the cycle and was starting to feel so much better, ready to join the gym.

SCREEEECH! I got noped out of that, but for good reason. If you're going to put your life on hold, do it once if you can. Let's get as much out of me as we can. It's virtually impossible to be Lyme-free, but the fewer bacteria hiding out in your body, the better chance you have of fighting off the flu or other such things without Lyme coming BACK out of its lair and going.

So, on to the next phase. Let's get sick again by dragging out the spirochetes who had built "houses" around themselves, called biofilms. With any luck, for me this phase will last a year. I'm about a third of the way there. And then who know what will happen? Can't think that far ahead.

To do that, I'm taking things that dissolve their homes ("a plague on both your houses!" ~~ Mercutio, in the most incredibly awesome Baz Luhrman version of "Romeo and Juliet") and let the antibiotic pulse cycle start its killing again.

(It helps to keep your humor up, and books and movies handy when you're actually capable of comprehending what you're reading or seeing, let alone keep your eyes open!)


The result...you feel like holy hell. But even in this, I can see improvements, small, but there, as I track my symptoms daily, as should you). I've discovered that something is giving me hives for a few days. Tracking that. I discovered that weather has a HUGE impact on me. Yesterday my elbows hurt. Whoever heard of that? But tonight, I'm up, writing, and hoping to take the family to the movies tomorrow. That is the ONLY thing I have planned, by the way. I've learned the hard way not to push too hard when I feel more normal. You pay for it dearly the next few days.


And of course, any spare time I spend with my family, because I never know -- none of us know -- how much time we have, and I'll be honest. I'm fighting a hinky gallbladder (surgery September 8th...more on how that relates to Lyme later) AND lyme, and I've told my husband numerous times, "this must be what dying feels like". Then I try to close my mind off from that and imagine living a long, fulfilling, healthy life.

That being said -- it is more often than not that it's VERY difficult for people to even begin proper treatment. It shouldn't be that way.


I found this short clip, and I hope you take five minutes to watch this. It explains why the government is suppressing Lyme disease. There are far more reasons, and they get more and more complicated, but this is a quick, simple explanation.


Apparently there's no money in making people well.

Lyme -- Does it Affect Women More Often?

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My friend Beth sent me an interesting article from SELF magazine, June 2016. First, I'm grateful when friends send me articles, links, anything at all about Lyme disease. The books often leave me stressed and I get panic attacks (so MUCH!), but the articles and links are very helpful.


I went to SELF magazine's web page and found not just this article, but MANY articles about Lyme. If I could do a cartwheel, I would. The more magazines of this type that talk about Lyme, its causes, its difficulties, and who in the fame world has been affected, the more people start paying attention.

SELF Magazine, June 2016
www.self.com

My life has been destroyed by this disease. I've had doctors call me a liar, a drug seeker. I've had doctors throw their hands in the air in exasperation and tell me they don't know what I have but it might be rheumatoid arthritis (which runs deeply in my family); chronic fatigue syndrome (but doctor, I'm exhausted but can't sleep); the fact that I'm overweight (I cannot work out if I feel like a Mack truck hit me and I'm throwing up - the neighbors frown on that around here when I person takes a healthy walk); fibromyalgia (Doctor: "Does this hurt?" Pushes so hard on my shoulders I nearly fall over. "Um it didn't tickle, I'll say that!"); and finally, Lupus.


I was treated for Lupus for a year with methotrexate. While taking methotrexate, a doctor normally prescribes folic acid (or folate) to lessen side effects. However, make sure your doctor has checked to see if you have the MTHFR mutation, because if you do, and many do (raises hand), you must take a different format -- L-methyl folate, common name, Deplin. Also, avoid caffeine. My rheumatologist failed to tell me that and a bunch of other things, but as she flatly told me, she didn't see what SHE would call lupus or rheumatoid arthritis (didn't matter when I showed her my normal ring size, a 4.5, and my current ring size on a good day, a 7). Therefore, she said, she was treating me only according to my RA factors on my blood tests.

A piece of my jewelry made to hang from the rear view mirror.

And herein lies a huge problem.


I didn't have Lupus, and the medication was making me miserable. Lyme is the Great Imitator. And that is one reason why so many are diagnosed so late. The CDC also believe that Lyme is difficult to catch and easy to cure with a month of doxycycline. Bless those people for whom that works. But if you have been harboring these bacteria in your body for who knows how long, well, God bless you, too.


So back to this particular SELF article "Are You A Target For Lyme".  As I read through the same stories I've heard over and over about people having no idea they'd even been bit, bold type hit me.

"Women are less likely to test positive and more likely to suffer symptoms longer."

That got my attention, and I wanted to share this magazine (June 2016, SELF) so you could get a new, focused article on women and Lyme disease.

In addition to the information in the article, the piece explains how to tick-proof yourself if you go camping or for a walk in the woods, something I've been afraid to do for four years. The article also helps you identify a tick on your body. This can be a challenge, as they are often the size of a poppy seed. Some people find them between their toes if they walk barefoot through the grass (I used to do that all the time!). If you find a tick, take a photo, put it in a baggie, and take it directly to your doctor IMMEDIATELY.  SELF also passes along the helpful website TickEncounter.org/tickspotters.

My personal advice (and warning) -- get thee to a doctor immediately and be prepared to be blown off. I say that because the CDC just does not agree with so much of the research that shows Lyme can be and often is chronic. To learn more, please watch the documentary "Under Our Skin" and you'll learn how politicized this disease is. I cried when I saw how the Zika virus was the focus on TIME magazine, and while I wouldn't wish ANY disease one anyone, I felt so marginalized. When, doctors, insurance companies, Big Pharma.... when?

Thank you so much, SELF magazine, for publishing articles such as this. It allows women from all walks of life to find information that seems to be so hidden in other publications. 

Bite Me by Ally Hilfiger

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I just started reading "Bite Me" by Ally Hilfiger.


I'm only two chapters in and I'm in tears.


This. This is how it feels.


“Lyme is also destroying families, and the really sad thing is, a serious illness is when people need their families the most.”

—JORDON FISHER SMITH, NARRATOR AND SUBJECT OF THE AWARD-WINNING LYME DISEASE DOCUMENTARY UNDER OUR SKIN


It's happening here, whether I want to believe it or not. At some point my child sadly says he can't remember a time when I wasn't sick. My incredibly hard-working husband tracks my medications, makes sure I take them (even at 4 AM), does laundry, cooks, tries to keep the house just this side of a mess. That really leaves no time to just be my friend and husband.


I can't remember things. Names of things right in front of me. Conversations. And horrifically, my son's birthday when I tried to fill out his forms for summer camp.


That's terrifying for a woman whose big desire in life is to write about my travels, my dreams, my downfalls, and how I ultimately conquered them.


Now the book will have a different ending.


I'm so tired that just writing these few posts takes hours. I hope to start telling my stories to my web cam. Maybe one day I can pull it all together.


I just don't know.

Lyme Disease ... more prevalent and insidious than you may have thought.

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A lot of people, including the CDC, believe Lyme is difficult to catch and easy to cure with a month of doxycycline. For some, this regimen works. But if you grew up like I did on wooded properties (home, grandparents, etc); regularly tramped through the woods with your dad in search of rhododendron and mountain laurel; helped cut and load wood on the mountain, and had more than a few ticks have their butts heated with a hot match to get them off you or the cat; well, things can lie dormant.


And then they wake up.


Time goes on, and I'm hit with MRSA, spending time in the hospital with a PICC line hoping the super-bug will be killed. I get it again. Then I'm diagnosed with a relatively rare headache syndrome. I'm treated until insurance refuses to pay for multiple nerve blocks in the forehead. Then family stress crushes my heart because I'm the type of person who wants to cure/soothe/help everybody, but the strain is building.


Stress is a huge trigger for lots of illnesses, by the way. But I'm sure you already knew that.

That was my life. I think 2011 was the last time my blog Pretty Things had the readership and a degree of humor and any connection to actual Pretty Things.


Right now, my medical protocol is to teach my immune system to fight on its own. But I need extra help so I don't break my family or break myself. I have a therapist now (well, again). I feel she is the right person. She calls bullshit, which I love, when I try to take on things that are a) too heavy, and b) not my problem. I have to quit trying to be the person I used to be ... commenting on blogs, keeping up as much as I could with other people's travails, because I no longer had the energy or emotional strength. That in itself is a stress, because I feel called to help, on a personal level. Yet..and yet.

I ran across this article and I hope you'll read it. The corollary to AIDS is apt, as my current doctor originally worked with AIDS patients in the same way he started treating Lyme patients ...we can't kill what's killing you, but we can train your immune system to fight better ... but there's a significant cost, both financially and emotionally.

Currently I feel I have no choice but follow their aggressive protocol. After all, I talked to a dozen or more past and present patients. I watched and listened to him on the documentary "Under Our Skin" ( a must watch if you want to understand why this disease is politicized, has polarized and bullied the medical field, and why we're not getting proper diagnosis and treatment).


There's so much more I want to say, but that will be another day or twenty. Please read the article, find the documentary, and let me know, what do you think?

Lyme and Suicide

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Following is an article from WhatIsLyme.com 



I just can't say anything else.


http://whatislyme.com/lyme-and-suicide-a-problem-ignored/

Do you have Lyme Disease?

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I got this email from Lyme Disease.org and thought it would be a good thing to pass along. In no way is this a medical prognosis, but it does give you some information when you visit your doctor.

CLICK HERE to visit the site page pictured below.

Lyme's Secret Patients

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The following is a copy of an email I received from  www.LymeDisease.org.

You can read it here and click the links here.

IDSA won't release names of "patient representatives" on Lyme panel. What are they hiding? Last year, LymeDisease.org joined with other groups in protesting that the IDSA's "Lyme patient representative" didn't have Lyme or know anything about it.  In response, the IDSA now says it has appointed four more patient representatives, but they won't tell anybody who they are. READ MORE. IDSA says new guidelines process will take 2-5 years. Why does CDC still endorse the old ones? Although IDSA's Lyme guidelines have been removed from the National Guidelines Clearinghouse for being out-dated, the CDC continues to endorse them. READ MORE. Ask your senators to co-sponsor Lyme bill, S. 1503 The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015 is still in committee. Please use our Voter Voice system to contact your senators, asking them to co-sponsor this important legislation. Details here. LymeDisease.org, publisher of The Lyme Times, is the Lyme community's leading source of news, information, and health policy analysis.  Become a member today.

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