Tag Archives: Questions about Lyme

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.

 

 

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.

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Question & Answer Part Two: Lyme Disease Awareness Month!

This is a re-post from earlier in the spring:

These questions all come from readers of my blog. These are MY answers. If anyone else out there who suffers from Chronic Lyme, please offer comments!

Q: What sorts of non-traditional therapies/treatments have been successful in alleviating Lyme symptoms/issues?

I take tumeric for inflammation and pain. I use a far-infrared sauna for detox. I use a myriad of supplements that help support my liver and to help produce glutathione, which is critical for detox, and not bountiful in Lyme patients. I have regular coffee enemas, which at one time were the best treatment for cancer of the pancreas. They signal the body to produce more glutathione.

I, personally don’t use any narcotics for pain but my Lyme disease is primarily in my nervous system, or at least it was for the first 23 years or so. I have serious muscle and bone pain now, but it goes away. Since I don’t have access to medical marijuana, I don’t use it, but some people do. If I did have access, I would make it into an oil and rub in on my feet.

For years, I stayed in remission with regular colonics (colon hydro-therapy) and acupuncture. Diet is super important, too. Most of us have trouble with gluten. In fact, I don’t know a lymie who doesn’t. Acupuncture does nothing for me anymore. It used to, but it doesn’t anymore.

Q. Are the non- traditional treatments better, worse, or the same as traditional Western medicine treatments in their effectiveness?

This one is hard to answer. I know people who have done nothing but anti-biotics for treatment. I know people who have done nothing but herbs or rife (frequency medicine). I know people who have done light or photon therapy with great results. Of all the people I know, either in real life or virtually, I only know one person who is well. We all have to crack our own personal code.

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?

Great question, especially from a Doctor’s wife! Let’s see. . at one point, I thought I was going off the deep end with managing meds. The Big kid was on Ceftin and Zith, Ceftin twice a day, Zith once. Zith couldn’t be with any magnesium. Ceftin couldn’t either. I was on Doxy at the time and couldn’t eat that with dairy. I was also on Zith and so was the little guy. That was hell. And then, to save our guts, we took probiotics several times a day, but never with 2 hours of the abx.
In addition to the abx, we were/are on about 6 – 10 supplements a day, which are all prescribed by our western medical doctor.

Then we were on an herbal program, all the same. DREAMY. Pretty effective, too, but The big guy’s spleen is too full to continue, in my opinion. Now we are doing frequency medicine and nutrition, with just one herb to target the Babesia for The big one. We are all treating with herbs for parasites. Herbals are harder on the lyme. Anti-biotics are harder on the gut.

The difficulty with treatment is that we don’t just have one infection. We all have, or are suspected to have: Erlichia, Bartonella, Babesia and Lyme. We do pretty well for having a bunch of infectious diseases.

How do we keep track of it all? Very poorly.

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.

Ha! Your guess is as good as mine. My speech is NOT very good. My handwriting is awful. But typing, my cognitive processing is better. I am very grateful for spellcheck and I avoid the blog when my brain is really bad. Instead, in typical OCD fashion, I clean the house until I am exhausted.

Q. I know a lot of people who have had lyme. But they aren’t sick anymore. How come you are still sick?

I was never properly treated for my Lyme. In fact, sometimes I wonder if the big bite in 1985, which caused me to have a big rash and a personality change was not my first bite. Are people with Chronic Lyme actually dealing with the fact that they have had multiple bites over their lifetime? I can’t even count the number of imbedded ticks I had as a child. And I think both of my parents had Bartonella.

The IDSA never addresses the fact that so many of us were treated with 10 days of antibiotics. That isn’t even good science. The replication rate of these bugs that I have are all different. 10 days works for strep. Not for Bartonella, Babesia, erlichia or Lyme.

Q. You say your kids are congenital? What does that mean? I had Lyme when I was pregnant. The Lyme Bacteria is a spirochete, just like Syphilis. Syphilis is sexually transmitted and crosses the placenta. In our case, Lyme did the same thing. We had a son that died during the second trimester of gestation. The other two are still here. Sick, but here.

Q. But your kids aren’t that sick, right?

That’s tomorrow’s post.