Why Are You Still Treating For Lyme and other questions I wish you would ask.

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.

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

So, what other questions do you have? I’ll answer them. Really.

And folks with lyme. . feel free to share this liberally. . .

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14 responses to “Why Are You Still Treating For Lyme and other questions I wish you would ask.

  1. Comment. Hi there. Thank you for posting this, you are obviously working a lot of negative stuff in a positive direction with this blog/opportunity for the ignorant bystander. So. Do you have problems finding a doctor that can properly diagnose and treat your condition(s) given the fact that western medicine seems still to be forming its opinion of chronic Lyme?

    • Thanks for the kudos. Comments help me stay brave. Yes, it took me many, many docs to get past the standard, “you are 40 years old and have a baby, of course you are tired” and the dx of chronic fatigue and Fibromyalgia.

      There are two docs in MN that take insurance that USED to take lyme patients. Maybe three. And two docs that cost $600 for the first visit. Most people who think they have lyme see a doc in Wisconsin, or they head out of state.

      Monday there is a Senate Hearing for a bill that is designed to protect doctors from getting their license threatened for treating appropriately. See the film underourskin (I own a copy) for details on the issue OR mlasg.com for Minnesota issues.

  2. This is very helpful, Jeanne – it clarifies what you’ve already shared with me quite a bit. I’m sorry to know how difficult your and your family’s life is. Maybe I’ll be able to be of practical and/or spiritual/emotional help down the road. Meanwhile, I will hold you and your kids in my heart.
    Namaste, Paul

  3. Thanks for being so real!

  4. Wonderful, wonderful post. Really. Thank you for doing this. Reading the truth of our situations is painful, but grounding. I hope you get a few questions.

    See you soon, molly

  5. Here’s a question about treatment: How do homeopathics help? Do they work in conjunction with Western treatments? What do most Lyme patients choose in their own treatments?

  6. I enjoy your writing. It’s frank. It’s how it should be, really.

    Question, how long have you been treated?

  7. Angel Curl ( Lynn)

    Five gold stars. The honesty of this has really struck home today. I have spent the week trying to figure out why I am stuck. What is wrong with me? Why cant I get better? What am I not doing? I worry my children are showing more symtoms, is my partner fed up and might he leave ? do my parents resent more private medical bills? I surmise that other families coping with Lyme Disease and co-infections surely must be doing better than us. managing their protocols, eating more healthy, spending more time doing what they need to in order to find health. Then I realise that really we are all just swimming in the dark trying our best to do what we can with a disease noone truly understands. The truth is not always easy to read or to write but honesty is exactly what I needed to read today. From one mother to another, thank-you.

  8. Thank you for your very well written and excellent answers to questions that everyone either asks or thinks but is afraid to ask. When Lyme hit our family over 20 years ago it affected my then 9 year old daughter first. Then it hit my wife with completley different symptoms than our daughter. THankful ly my nine year old is now 30 years old and has lived the past 21 years to the fullest. A hero named Dr. P treated her after 12 docs told us we and she were crazy. Dr. P diagnosed in ten minutes what the other docs either couldn’t or wouldn’t. As my wife sank deeper into the grips of the disease my daughter got well and has stayed well for the most part. Meanwhile my other daughter was diagnosed but never really had the terrible symptoms and 12 weeks of IV abx seems to have put it into her past, although we always hold our breath and say our prayers. I contracted it probably about the same time as my wife but was too busy working and taking care of my daughter and sppouse I used the old Denial strategy until my heart began beating at an erratic pace and my brain couldn’t find its way home from two streets away.
    Ok enough. I just wanted you to knbow I empathize with you before I give you another question to answer.
    Q., If your nervous system is so messed up why can you write such a concise, clever, and insightful essay on the subject of your neuro impairments and other lyme problems/questions.
    Q. I know a lot of people who have had lyme. But they aren’t sick anymore. How come you are still sick?
    Take a stab at these because I ask myself those questions every day.

  9. You’re amazing. You really are. And if I lived in the area, I would totally help you out. I really would. I just figure I’ll do my best to help out in any little ways I can from all the way out here.

    In the meantime, here’s a question that would be an eye opener, I’m sure:

    Q: Can you elaborate on a daily treatment regimen – that is – drugs or therapies or remedies that you have to take/do? Is it different every day? Is it different for every person? And how in the world do you keep track of it all?

    Q: What sorts of non-traditional therapies/treatments have been successful in alleviating Lyme symptoms/issues? Are the non- traditional treatments better, worse, or the same as traditional Western medicine treatments in their effectiveness?

    Love your posts. Keep writing. It’s inspiring.

  10. wow i can really relate especially to the question ” if you were treated how come you are still sick?” i have had lyme disease since i was a litle girl and somedays i feel like i can’t go on and do this anymore.. (like today).. then i think i have gone this far.. i can go the rest..”i think i can ..i think i can ” 🙂

  11. I really like your blog — what you say and how you say it.

    As for Lyme & bart rage — yeah, I’ve had those, and it was hell, for me and those around me, especially because we didn’t know that’s what it was — it lasted two years. I have such fear of that returning, especially with the arrival of a new puppy. I blogged about it a little, and it was scary. For me, the psych symptoms have been the hardest to tell non-Lymies about, so thank you for mentioning that. It gets easier the more other talk about it. I linked to another blog that described a bart psych herx. I was glad to be able to show it’s not just me.

    Also, for talking about congenital Lyme. Even here in Mass., “the Land of Lyme,” hardly anyone knows about it.

    Your comment about “just show up and help” reminded me a lot of a friend of mine who’s been sick with the same illnesses as me for a very long time. She said, “If someone in my building has a cold, people ask her how she is, they bring her soup. I’ve been sick 15 years. Nobody ever brings me soup.”

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