Category Archives: Babesia

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.

 

 

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It’s been a long time, been a long time. . .

I haven’t blogged for awhile. Well, it’s been more than awhile. Life has been full. Full of joy, full of sorrow, full of tasks and musings. Mostly, I don’t want to talk about my life, slogging from one infectious disease to another. One goes high, then others go low and it feels like we are on a fulcrum, participating in some strange high school science experiment.

We’ve been treating with the PE-1, or the Photon Energetics machine, with homeopathic nosodes. It’s been good. And it’s been hard. And it has been all the things that this seemingly never-ending lyme treatment is.

This journey is so much longer and I have to be so much stronger than I ever imagined I would have to be. But we are doing it. Stable? I think so. Better? I think so. Even if my neurologist thinks I’m not, it’s all about perspective.

The little guy is up at Grandma and Grandpa’s this week. I hope to blog all week!

Persistent vs. Chronic

I don’t like the word, “chronic” applied to my daily struggle. It sucks the hope right out of me. I don’t want to be chronically ill. Years ago, when I was around a whole lot of people doing spiritual work, a woman told me that she always wrote, “Healing,” when a form or an application asked for current employment or position.

I am healing. I am healing from persistent infections that have taken me down over the past 27 or so years. I am healing from persistent infections that very few people are researching a cure for. I have treated for a considerable amount of time, and yes, all of these infections are so incredibly persistent. Some days, I feel better, but overall, I don’t often feel like I’m winning my fight.

I want to be one of those people in the 10% that are on their way to beating or have beaten this illness. I don’t want to be in the 90% that appear to be chronic.

So, how do I go from one group to the other? Attitude is everything, or so “they” say. I think they are wrong. I think the recipe is 1 part attitude, 3 parts passion for life, 5 parts finding the right doctor or practitioner to guide your journey. Throw in thousands of dollars to be able to treat. Add a little luck for the right social security attorney and judge. Extra bonus for an organization like Pathways. Then subtract the number of people in your family infected, after you multiply that number by 10. Finally, take the number of great friends and family (and in my case my current and former student family) that stick by you through everything and multiply that with enormous love.

That’s where you get your answer. And that answer can only be hope.

That’s the recipe that I believe to be true. I’m missing a few things, so I have to keep making shifts. I move things around and do what I can to solve the equation.

It’s persistent. And difficult. But I need to hold on to hope.

Everything is Coming to a Grinding Halt


Remember that song?

I got a comment that made me pause. In fact, it brought me to a grinding halt. I was forced to remember what my values have always been.

The comment was really hard for me to read. The author of the comment was clearly someone that knows me, has helped me frequently and feels used because our relationship isn’t a two-way street.

I stopped blogging. I got swallowed by shame. I wanted to know who it was, and how I could make it up to them and I felt like a selfish pig. I thought I needed to stop asking for help completely. I was trying to convince myself that I don’t have needs.

But I didn’t quit blogging. I didn’t let myself fall into a deep despair because I don’t have the energy for that. If can’t even walk up a flight of stairs because my heart is not operating correctly, I can’t let myself be pulled down by someone’s belief that somehow I am not enough or that I don’t do the relationship correctly.

Good deeds can never be reciprocal. They are circular in nature. You are always paying it forward in life. I set up a soup train for a family dealing with depression. Kitty and Fun came over and spent the whole day cooking prepared meals.

I had lost my appetite and stopped eating. Their love and good food filled me up and made me want to eat again. I set up an auction for a friend who needed financial help. She can now afford to continue treatment. I give. You give. We just don’t always need to give in a “two way street” pattern.

I’m sad that a “friend” wouldn’t come to me and tell me I was neglecting her, and that she was offended by my “all me, all the time” energy of my blog.

Hmmm. . .what’s a blog for? It’s about me. My story. My experience. My needs. I am so grateful that I am strong enough to ask for help. When I ask people for help on any level, I believe that I am full of gratitude. When my friend Carrie comes over to help, I ask about her husband and daughter and her work and her dog. I don’t always call and check in with her (well, there is that issue that I HATE the phone), and I don’t always email her to ask her about her teaching.

I try SO hard when people visit to make it about her/him just as much as it is me. I try to make sure it is about community, not about me, me, me. I’m not in the world every day to see people. I’m caught up in my own life. And it is full.

And I have very limited energy. I am in a constant push/pull against what I want to accomplish on a daily business. I have shoulders that can’t get to 90 degrees. I can’t unload my dishwasher or dress myself. Sometimes I can’t take care of my sick children, and no amount of money in the world will give me healthy children or a husband that is well. This is my life. It isn’t bigger or better or hard than yours. The events and needs in my life don’t matter more than my neighbor’s life. My difficulties do not trump the young woman on the East Coast, a dancer since the age of 3, who just gained the ability to walk this week after two years of not being able to. I am not better off nor am I worse off. There is no hierarchy of pain, grief, despair, illness. There isn’t. Your brain tumor is not more valuable than the stage 4 Ovarian cancer. A job loss or longtime unemployment is not more or less difficult for you than anything anyone else is going through. Different. Just different. And hard. All hard.

No matter what our struggle, we need to maintain the courage to ask for help. It’s been a very difficult life experience for me to be so vulnerable. But I encourage everyone in need to try it on for size.

When you hurt, tell people. When you need, ask. You can’t worry about the outcome, even if your friends start feeling used and hurt. If you are feeling used and hurt you can step forward in courage and talk to your friend. Holler, “I NEED YOU.” Be honest.

Every time YOU ask, every time I ask, every time YOU help, every time I help, We send that strength and courage into the world.

What’s my alternative to asking? I can’t do this alone. None of us can through our troubles alone, and if we try to, we will just end up feeling hurt and lonely.

I have been grateful for every single person who has donated time, energy, love, or money to our family. Every dollar. Every moment. I may not express my gratitude as much as people would like. I may not return it in an equal value, but I’m doing the best I can. Just doing the best I can.

I’m back to blogging. No more music by The Cure as my daily theme song.
Because out of my “All me, all the time,” blog, I know I’ve touched the lives of people that live in overwhelm and Moms that live in fear for the lives of their kids. I know it. And I’ve saved at least one life.

Babesia Blues

Photo by and of Lisa

Lying in bed, wasting the day away is everyone’s dream, right?

A day off, a nice little break, a vacation, sure. Day in, day out is getting a little old. I use to be a highly functioning Lyme patient. Remember my post about being the energizer bunny? I used to be able to push myself to the point of collapse, and now I wake up already collapsed.

This appears to be life while treating Babesiosis.

I’m thirsty. I can hardly keep my head up. In fact, I can hardly keep awake. I go through hours of chills, followed by serious, drenching sweats. My skin looks dehydrated. My heart is racing faster than ever. And I can’t do anything productive. I’m sobbing in short burst. I can barely make it to the bathroom. But at least with NO energy, I can’t rush into emotional explosions. *Bright Side*

Such is the nature of Babesia. My friend had Babesia as her primary illness. I have always seen mine as Bartonella, until I treated it really hard. Now, it appears that Babesia has the upper hand. My friend says, “You don’t have good “days” with babs, you have good “hours,” and that is no exaggeration.

I miss the good days. I think I had one last week, after stopping all babesia treatment for more than a week. But yesterday, I started a new product called, A-Babs. A lot of the natrapathic doctors and medical doctors are using it. You typically start with a drop of two. My doctor suggested even 1/3 of a drop could be devastating for me. But I did the 1/3 a drop. And it was terrible.

I’m having hours that are better, but so far nothing good. I’m not going to do another drop for a few days. Yes, I might just be the most sensitive person on the planet. Or at least ONE of the most sensitive. If there is a reaction to be had to a product or a treatment, I will likely be the one.

So, I need to look at it this way, at least it makes this $89 bottle last forever, right?

I’ll keep you posted.

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.

Forgiveness

I’ve had a whole lot of therapists in my time.  I’ve dumped a few, one has died, others I just stopped going to and they never called to check in on why I left.  But there’s one that keeps coming back into our life.  My husband saw him 13 years ago for Life Coaching, and then on and off we’ve seen him as our relationship coach (makes it sound like we are proactive about the relationship, rather than trying to put out fires, doesn’t it?)  We’ve been seeing him for the past couple of years as we deal with all the relationship issues that tend to spin around a couple that is dealing with a chronic illness (or 2 or 3 or 4).

I got a text from hubby this morning, reminding me that we had an appointment, but he had to work, and would it be okay if I went on my own?

Ugh.  It’s a lot of money to waste, so I went.  And, I was okay with that.

I walked into the office with the DSM IV under my arm, a little light reading swiped from the bookshelf in the waiting area.  Clearly, I sent a message of, “I mean business,” and “I’m ready to pathologize myself!”  ; )

I thought I would be nervous. . but we jumped right in.  John has a way of getting to the core of issues. . inviting you just to crawl into the belly of the beast.  One session with him is like 6 months worth of a mediocre therapist, and believe me, I’ve seen plenty, I’ve gone to school with a few, and I’ve heard about even more.

I told him that paying him was like doing my own psychic reading, and having him as a witness.  And it was worth every penny.  My heart just cracked open and I saw truth.  Well, at least after we argued about my enneagram and its fondness for suffering.

I need to forgive myself.  For being ill.  For not opening my arms and my heart to the Faculty member at my college who cornered me in a hallway and told me that she thought I had a chemical imbalance, soon after the bite, instead of pushing her and all the people who cared about me away.

I deserve to forgive myself for not allowing myself to be vulnerable.  I was trying to make a name for myself in a male dominated profession.  I believed I had to hide behind my toughness–my ability to leap tall buildings in a single bound.

I need to forgive myself for believing that my natural treatments, my holistic work, my diet and my yoga were the first line of defense to my issues.  I need to let go of the “what ifs” and the “if onlys” and just accept what is here.

I need to forgive myself for passing these infections to my kids and to my husband.  And stop pretending I’ve already forgiven myself.

I deserve to forgive myself for not having all the answers.  For not knowing that my kids were infected.  For not knowing that all of my seemingly little issues were actually really big, and far beyond what I could handle myself.  For denying my gut feelings.  For trusting people who said they could help me, and for not recognizing that they were full of ego, not care.

I deserve self-forgiveness.

I get to soften to myself–stop thinking that I have somehow failed because my novels aren’t published, and I’m not famous.  I need to forgive myself for not “being all that I could be” like the guys in those Army posters, or the people I went to College with.  I need to stop believing that because I haven’t accomplished all that I thought I would by this age, that I haven’t made an impact on the world.

I need to see myself as a beautiful result of every moment, every decision, every happening in my life thus far.  The joy, the initial infection, the hope, the chronic nature of my illness, my creativity, the difficult treatment.  All of it.

Radical Forgiveness.  That’s a tough one.  But I’m giving myself the invitation.  If I get through this lesson, I might actually start believing there is divine order in the world.

That would be a miracle.