Category Archives: Politics of Lyme Disease

Good Press, Bad Press?

I appreciate the frequency with which the NY Times has been covering Lyme Disease, but I wish that would do some more fact checking.

I love the tone of this blog post, written by Hope Reeves. — Yes! Take this seriously. But there’s so information missing that is critical if you want to keep your family safe, and to make sure those who get infected don’t have life long damage from these illnesses. Remember, I was undertreated. I passed lyme to my kids. My serious health issues didn’t debilitate me for 20 years. Know the facts and the theories if you or your family members get the “flu” this summer.

TREATMENT: It horrifies me when all the press that’s coming out this year talks about antibiotics treatment for 2 – 4 weeks for an adult or child. What kind of untrained doctor are these people seeing? Even my family practice doctor treats for a minimum of 6 weeks. Most docs who have any education at all in Lyme Disease will treat for 2 months past the last symptoms. TWO MONTHS.

RASHES: And, the whole rash issue just chaps my ass (pun intended). There are so few rashes. I had a rash that was diagnosed as an allergy to the nickel in my jeans. In 1986, it was a dermatological issue. Even though it was a bullseye.

LOCATION: The focus on the Northeast as primary might make people in other parts of the county feel like they are safe. Not true. I know whole families getting tick bites in Northern California, Florida and all of the country (and beyond).

TRANSMISSION TIME: We focus on Lyme, but we don’t know the transmission time for other tick borne illnesses, and if you are one of the few people these days who gets LYME only from a dirty tick, you should start playing the lottery, because it is VERY rare to have just that illness. And the most traditional doctors admit that Babesiosis needs at LEAST 6 weeks of treatment.

DEER aren’t the only ones to blame: We have to stop blaming the deer. Two of the most common transportation methods for deer ticks? Not the deer but birds and the white footed mouse. And we need more research into mosquitos as vectors. My son had a Bartonella re-infection that was thought to be from a mosquito. And let me remind you, you don’t want your kids to get Bartonella.

So, no matter where you live, even in an urban apartment, if you get ANY flu like symptoms in the summer, just assume it’s a tick borne illness and find a doctor that will treat you properly. Don’t trust that your family doctor has the education YOU need.

I hope the NY Times Motherlode blog and other high profile mama bloggers do some deeper digging so we can protect all kids better.

 

 

Rubik’s Cube, Revisited

I know one person who has lyme that is well. ONE. And I only know her virtually. She has saved my life on more than one occasion. And my marriage. She lived in hell, like the rest of us, but now she has clarity. She KNOWS that all this ‘fighting for our lives’ business is worth it. Good thing, because most of the time there is nothing in my life to make me believe that. So, I need to trust her.

But, why is she well? And how does one person being well give me hope, when there are thousands who are not, many who have died this year alone, and kids being born to moms with un-diagnosed lyme every day?

Because if one person figured out treatment for her particular form of this insipid disease, then more of us can. It is like a Rubik’s cube. My friend Leland can do one in no-time-flat. Me? Not so much. My son works it with the instruction booklet. Try one twist to the right. One to the left. Get ahead. Step backward. Get boxed into a dark alley by Bartonella. Waltz around with Babesia. Try another herb, another antibiotic. Add another layer, try another probiotic. What about frequency therapy? Sauna? How about light therapy? Diet? Raw Foods?

Yep. If I know 200 people with CHRONIC LYME disease, there are 200 different rubiks cubes to solve. When I used this analogy, my kid with serious cognitive trouble glares at me. “But MOM! I can’t solve the Rubik’s Cube!” Nope. Neither can I. That’s why we have Anne coming over with Freddy to help us on Wednesday. Carrie in the afternoon. Dr. P. sees me on Wednesday. Isabelle is going to sew some casings and hems to get some curtains on our windows, finally. That frees up the little energy I have to make appointments for the acupuncturist, check in with the frequency therapist, administer coffee enemas, the coconut oil, the homeopathics. We just keep twisting until we find something that feels like it is working.

Too many cooks spoil the soup? Is it like a big wapatooie party where everyone throws the liquor in the Kool-Aid and everyone gets loaded? Kind of feels that way. . but it isn’t. We have to find the right combination because there is no protocol that works for everybody. Nothing like a life threatening illness to make you learn to trust yourself. Nothing quite like it.

Now, back to the rubik’s cube.

What’s The Big Deal About Lyme Disease, Anyway?

This is a repost from last year sometime.  Thought it might be a good one for Lyme Disease Awareness Month.  Please share the link on your facebook wall.  Anyone can get lyme.  You don’t have to love the woods, you don’t have to own a dog, you don’t even need to leave the city to get it.  So learn about it.  And do your friends a favor by sharing information about it.

I’m thinking there are a whole lot of people who would like to ask a whole lot of questions of me, directly related to my illness. But I don’t know. Part of me thinks my house could be on fire and no one would notice. Everyone is busy. Life is full. Most people keep their drapes drawn and hope that the sick family is okay. Maybe they think we should be well. . and think we must be crazy since we aren’t well.

I start to wonder what people might ask if they didn’t feel like they were being petty or judgmental. So, I’m going to imagine this little question and answer, all the while, wishing people might just ask us for the answers. If people were asking these questions about our illness we might feel a little less isolated.

Question: Why aren’t you well yet? The IDSA (Infectious Disease Society of America) says you should be well with 4 weeks of treatment. It has been more than a year since your diagnosis. What gives?

Answer: Lyme Disease is a complex disease that rarely involves just one infectious disease. Ticks are cesspools of bacteria, parasites and viruses and when they yack into a human (or animal) body, you get it all. Even the IDSA agrees that you need 6 weeks of treatment for Babesiosis. I was never tested for Lyme, for Babesiosis or any other co-infection. So, in 1985, when I got the rash and got sick, I had 10 days of antibiotics. Because of the manipulative power of the bacteria/parasites, my illness went into my nervous system, did all kinds of hiding, and I had beautiful remissions when I was pregnant. So, these little critters have been fruitful and multiplying in every part of my body for 25 years. It is a wonder I am alive.

Question: Why do you say your kids have CONGENITAL Lyme Disease? How can a tick bite be congenital?

Answer: Well, I had the bite and was only partially treated in 1985. Chances are that the infamous bite of 1985 was NOT the first time I had been infected with these diseases. I grew up having imbedded ticks and we traveled often to the East Coast. Both of my parents had obvious symptoms of Bartonella, including difficulty making decisions and society anxiety. When did it enter my system for sure? Nobody knows. But all the infections crossed the placenta, and/or entered the babies during gestation or breast-feeding. When? I know for our little guy, Ezra, it likely crossed in the second trimester, when he died.

Question: Why aren’t your kids well now that they’ve been treated for over a year?

Answer: Well, Lyme and co-infections set the terrain of the body to allow all kinds of viral and parasitic opportunistic infections into the body. My kids were born with chronic lyme. There is no definitive cure. Yet. I hope my kids get well. All I can do is help them change the terrain of the body to better handle the infections and parasites within.

Question: I hope you guys are doing okay over there. I think about you often.

Answer: Okay, so this isn’t a question. If you are THINKING about someone with a serious chronic illness, if you are sending them love and light, if you are hoping for the best, you could be doing something practical for them. They are have issues with memory, often have issues with executive function like returning emails, phone calls, or responding to requests for help, and are most likely extremely isolated as they fight for their health and for the health of their children. They might be depressed. They might spend their evenings surfing craigslist for pets they want to rescue but could never take care of.

Show up on their doorstep, just like the Mormons do and start doing something. Don’t try to plan it, or ask them if you could help, just show up. Do the dishes. Throw in a load of laundry. Organize something like a meal making night, a laundry fest, a cleaning day, or just take the dog for a walk.

Isolation is a nightmare. Anything helps. A simple thing is NOT too little.

Question: So, when is your treatment going to end? Well. . probably never. Will we get better? We hope so. I’ve been sick for 25 years. My kids were born in the chronic phase of the illness. Their immune systems are compromised and they are pretty darn fragile. There is no protocol for Lyme Disease. Every doctor does it a different way, and most doctors do it differently for every patients. And every treatment plan is a crap shoot.

Question: So, here is what I don’t get. You complain about your “herxing”, you talk about how crappy you feel, you say that your kids live on the edge. Why the heck do none of you look sick?

So, my challenge to this question is this, “what does SICK look like”?

Does it look like somebody who only has the energy to bathe once a week?
Does it look like someone who hasn’t had the energy to get a haircut in close to 6 months?
Does it look like someone who can’t push her 4 year old in the swings at the park because she gets out of breath?
How ’bout someone whose kids look like little rag-a-muffins?

That’s what sick looks like. No chemo scarf. No bags under my eyes. To be told I look great though, is to deny how shitty I feel. I joke with my friend Ellen, “you look great, but I bet you feel like shit”. That’s the best thing to say. Acknowledge my illness. Having my struggle ignored makes me feel even more isolated. I feel isolated even when I’m not.

Question: So, what about Lyme rage? Didn’t that chimp have Lyme?

Answer: Yep, the chimp that ripped the woman’s face off was being treated for Lyme. I’m not going to kid you about Lyme and Bartonella. Some people don’t have mood issues with either. Some have anxiety. I have that. And I get confused and lost and sometimes my brain feels like I’m trapped in a Steven King novel. That is why I need so much help. I’m trying to parent children while I have a horror movie going on in my head. It isn’t always there. But when it is, it is really hard. Really scary.

*********************

And No, It isn’t Munchausen Syndrome

I went to Physical therapy for a total of 64 sessions at one clinic and about 15 at another over the past year. My locked hip thawed, and my left hip developed an impingement. My Right shoulder started to freeze, then fully froze and now my left shoulder has an impingement. I’ve been told many things while I have had this shoulder problem.

“She appears to be a malingerer,” says the very young PT whose notes read more like the notes of a psychic than a health care practitioner.

“Her arm appears to be fine,” says the Psychiatrist who interviewed me while I had my hands in my lap. This was the same psychiatrist who told me that I was obsessed with a fictional disease that I didn’t have. (Note to the doctor that I named, “The Dragon Lady,” no one can actually have a fictional disease.”

“Her pain doesn’t follow the typical course,” from my functional capacity test.

Well today, a little too late, I was vindicated. Yay! This amazing Surgeon said that surgery for frozen shoulders are common place and yet there is no evidence that the surgery does any good. And he isn’t going to cut into my shoulder.

Because I have repeatedly “Refused steroids,” I am considered by many, a patient that doesn’t want to get well. But here, this famous surgeon was saying, it’s too late for steroids. And, if the left shoulder begins to freeze, we could do injections of steroids, but they would only last 2 months and with the auto immune component, he wouldn’t do it unless my primary doc agreed, and she won’t.


Apparently, there are a few things that I have going against me with this whole frozen shoulder thing.

1.) I am a woman approaching menopause (theoretical hormonal causality).
2.) I am fair haired, light complexion (theoretical hereditary causality).
3.) I have what the surgeon called a “hyper auto immune issue” that means there is really nothing that can be done to speed up the healing and physical therapy is the WRONG approach.

I’ve heard from other therapists that those who do the best with frozen shoulders don’t have auto immune crap going on.

My question is, “What is my auto-immune crap?” It doesn’t appear on any labs, really. Not any common ones. You have to dig into a specialized test at a specialized lab in order to see my auto immune condition. But it is there.

Not for one moment did he add Munchausen Syndrome to my list of challenges. Nor did he say, “Somatization disorder” is possible.

But today, none of that matters, because THIS doctor did me a great service. He told me that the fact that my peronius longus muscle in my left leg hurts every time my OT or bodyworker manipulates the trigger points in my right bicep, doesn’t make me crazy, nor does it mean that I’m faking it.

He told me that It doesn’t matter that my pain doesn’t make sense. I’m wired differently, that’s all. The man gave me no options and no solutions during our visit, but he didn’t treat me like an anomaly. He recommended I learn some baseball/shoulder stretch, and I’m meeting with his PT asap to learn those. It’s funny, he gave very clear instructions to the therapist. “Conservative Protocols: 4-corner stretch; reverse Codman’s; ceiling punch; No passive motion/stretching.” And a final note: “Be gentle.”

He treated me like I mattered. That my pain mattered. That my illness is causing my pain. And he admitted that he likely can’t help me. And that he can’t stop the left shoulder from freezing. Still, I walked out of there knowing that I’m okay. Despite my illness trying to tell me otherwise.

That, my friends, is a fine Doctor.

What Does it Mean to show up for a screening of Under Our Skin?

Tonight, there was a showing of the Award winning Film at my local Movie night. The fabulous woman who runs “movie night” wanted to show this to honor my family and our struggle, but she did so much more than that.

This is the night that many restaurants in my city participate in Dine Out For Life! By eating out at your favorite establishments, a portion of your meal price is donated to this organization. The restaurant my husband works at was donating to The Aliveness Project. Fabulous organization. Fabulous cause.

In his book, Healing Lyme Disease Naturally, Wolf Storl compares what’s going on with Lyme Disease with what happened in the 80’s with AIDS.

I look forward to the day that Lyme Disease, and all the wicked co-infections and opportunistic infections that find their way into our already sick bodies can be as visible, as supported and as understood as AIDS/HIV.

I’m not saying I want LESS support to go to AIDS/HIV. Look at all that has been done in the past 20+ years! I just want, for my kids’ sake, to have the light shine on the fastest growing infection in the world. I can’t wait for twenty years.

My son saw the film for the first time, tonight. He looked at me with pain in his eyes when the little boy says something about just wanting to be normal. I just want my kid’s illnesses to start being understood. AIDS awareness and support grew one moment at a time. And Lyme awareness grows one moment at a time as well.

A showing here, an article there. It doesn’t move fast because so many of us have the desire, but not the energy, the want, but not the will. This disease has robbed us of so much, so it becomes the friends and the neighbors and the people in charge of the Movie Nights that keep it going.

From the bottom of my heart, I thank you, Eastside Co-op, for advancing Lyme Disease Awareness. And thank you to the people at the showing for just showing up. Even if you attended because you were curious, or because you knew someone with lyme, I believe you were there for me. And my family.

Lyme Disease: It’s bigger than the warning on the bug spray can.

When the day of Resurrection seems more like crucifixion. Or: Happy Easter!

It’s Easter. I’m treating for babesia, and it sucks. I missed the Bunny, the egg hunt, everything.

The days of being the energizer bunny –forcing myself to take the stairs to get a load of laundry done, changing my sheets, teaching, closing the drapes, those things seem so far away. I don’t know that I will ever be able to do anything again.

And, I know that this is what it is like in the middle of a herx. I got up out of bed to use the bathroom. And then back to bed, a shaky mess. Now, I’m eating my son’s Easter basket, because I can’t get up to get anything else, I had no energy to make dinner last night, and my blood pressure won’t allow me stand without help.

Yesterday, I took the stairs one too many times, with one of my little lyme boys in bed with 102 fever and the other one obsessively hiding and re-hiding plastic Easter Eggs. I can’t keep going on like this.

People always wonder how I can drag my weary and pained body down to the co-op for mac and cheese, or . . . frankly, I can’t even remember what I used to do while sick, because right now, I have to type one letter at a time, delibrately, because my fingers and brain don’t seem to be communication. What I learned from Victor Parduhn in Typing class — the skills that I was told would be with me forever have failed. At least for today.

So, this is what makes me look like I’m faking it. The things that make bad Physical therapists who don’t know how to chart call me a “malingerer” or Psychiatrists that don’t bother to physically examine me declare, “There is nothing physically wrong with her.”

I’m tired. Not just of treating this disease, but all the disbelief that exists with it. I’m on a message board and people are trying to prove that sexual transmission of lyme doesn’t exists. . when the truth is, that there is no proof with ANYTHING in lyme. No proof doesn’t mean that this isn’t a wicked disease, but that’s how I am often treated.

I went out on date night on Thursday after going to the doctor for a glutathione push. Friday, I went to lunch with a friend, then picked up an 800 page document with many of my medical records from the Sir Speedy print. Yesterday, I drove to the co-op to buy candy and food for the kids’ baskets. I can’t possibly be disabled. Sure, those were the only things I did. One to two things a day. No cleaning the kitchen or cooking or walking the dog. No picking up around the house. Nothing else. But technically, because I did about 7 things in the span of a week, I am not disabled.

What does disabled mean? Really? Does missing out on 90% of life qualify you for that title? Not being able to get out of bed? Feeling pain that is so intense and it won’t let up. . .yet choosing not to take opiates because it makes more sense for my struggling body to breath, move through it, cry, hang on to the wall and just wait for it to pass?

Does spending time on Facebook because you can’t do anything else make you NOT disabled?

And what does it do to you if you are officially given that title? Can you give it back? Can you ever get well? I don’t know. I just want to be well. And I’m losing my patience.

“Your kid isn’t sick!” Glad you told me that. I won’t waste energy helping him heal anymore.

“But you are so good at teaching!” Yeah. . . I used to be, but it’s getting harder. Really hard. I do it because I love it. I do it for the money. I do it because the kids I teach are so amazing, and they remind me that I have skills and talents that nobody else has, not in the exact way I have them.

“But you don’t look sick!” Oh, thanks! I guess I’m not, then! I’m so sick of people needing to prove that I’m someone dealing with Munchausen Syndrome instead of something physical.

I’m just tired of the misconceptions.

I gear up my body and my mind to teach classes in the summer. It is really hard on me. I think about not doing it every summer. And then I get a message like this: “G took this class last summer and is enrolling again. She loved the class so much! I had never seen her so excited to share her work before,” and I know that I have value in the world, even when my body tries to convince me that I don’t.

Are the costs of forcing myself to not lose contact with the world finally catching up with me or is this just a herx I feel like I’m never coming out from?

I don’t know. It feels like no one knows. And that’s the problem. Yes, it is likely that I need a new doctor, one that will give me a little more direction. But that’s hard to find, drive to/fly to and afford. But I’m moving towards that. I need to get well, so next year I can feel the Alleluia, not just the crucifixion.

Our Partially Accessible World

When you have multiple chemical sensitivity, you get used to what is safe and what isn’t. At least semi-safe. You are always ready to run, mask in handto get yourself to safety if need be, and sometimes you stretch outside your tiny comfort zone to do something wild. Like go to the grocery store. Or walk into the library.

I’m so tired of the circle of possibilities shrinking in my world. Not just because of the chemical sensitivity but because, with this latest Babesia treatment, my muscles are getting weaker, like Joe Mauer and his bilateral weakness. I try to overcome it, but it is getting harder. And my breath is so limited. Bound by fascia, challenged by air hunger, it’s just hard.

I know that once the treatment kills off more of the bugs, this will get easier, but I’m tired of not having a disability that is easy to recognize, observe and treat. I’m tired of having an illness that doesn’t afford me the acknowledgement of its existence, doesn’t allow me to get a disability parking spots and won’t let my kids qualify for wish groups that might give us some support. I’m tired of having to be on my guard as I move through my already too limited world.

Now, we have a new drama added to the mix. My lovely, mostly safe food co-op, which is small and easier to manage, has a bike shop as a new tenant. I love the whole idea of a bike repair shop in the immediate community, but the fumes are intense for me. Not for most of their customers, but for me. So, one of the few places I could go, I no longer can without consequences.

I also just started seeing a practitioner who practices in a split level building with no elevator. It has no parking lot. So, I sometimes have to park a mountain’s length away from the door. It is exhausting. But I like her. So I do it. I give myself plenty of time in case my legs give out or my breathing makes me rest. I thought it was illegal to shut disabled people out of buildings and events. But it isn’t.

I just want a world where we all give a little, instead of the people who are disabled having to give it all.

When I was working as a yoga teacher, or building scenery for the theater world, I never imagined that I would someday be disabled. Never. I could swing a hammer and carry heavy tables and run power saws. I could run to my car and shift the clutch and walk around the entire grocery store with no effort.

I no longer take anything for granted. Each step becomes a lesson in mindfulness. They hurt. So I slow myself down and listen. Every breath is shallow right now. So, instead of jumping into the loss, panic and frustration, I notice. I breathe fully into that not-so-full breath and let it be okay that I am right where I am.

In this moment, I will stay present with my disability, instead of wishing for a different life. Today, I need to find the joy within. It’s there, somewhere. RIght behind the probiotics and the antibiotics and the nerve pain medicine — right there. I just have to notice it.

And the only way for me to do that is to slow down. My illness gives me a hyper-active exhaustion. I push through anything. . just making myself sicker. But, I’m trying to rest more. Take more time to be present with this step, rather than trying to conquer the huge mountain I feel like I’m still standing at the bottom of. One step at a time. That’s all I can do.