Tag Archives: managing kids with Lyme Disease

New Adventure: Bio Mat

We ordered a bio-mat. Yes, we wanted an IMRS mat, but the cost difference is too great at this point in our journey, so we got the bio mat instead. We ordered ours through Scott, the Better Health Guy and he has been very supportive through the ordering and delivery process.

Yesterday we all spent a little time on the mat sans lights. The teenager used it full on, lights and heat and everything.

Today, I did the same. He told me that he slept better than he has slept in years. Craving that experience, I decided to try it myself. I used it on the second lowest setting. Lots of negative ions generating. I was on it for well over 30 minutes. Very, very relaxing.

Loved it. We will see what tomorrow brings. I’m going to put the little guy on it. Hopefully it will mellow the little chatter box out.

Blog This SH*#$

Thanks to a dear friend and fellow blogger, I’ve got my fingers on the keys, again. Not that the nudge will get me back to blogging regularly, but today, I will. And maybe tomorrow. Facebook and twitter just seem so much easier. So much faster. But I miss blogging. So here goes.

My sons were never vaccinated. I get grief about it from people quite often. But never from doctors. With the history in my extended family and with my kids living on the edge, it’s just a good thing that I didn’t do it.

But, the whole PANDAS diagnosis/research seems to volley around the issue of vaccines. What does an unvaccinated kid who gets a “strep on steroids” infection look like? How do we treat him?

The answer so far? We don’t know.

So, yesterday, I packed a rental car full of things to do and food to eat and went to see a doctor that seems to get both Lyme and PANDAS, at least a little bit.

The journey was worthwhile, as always. I made him laugh. The little guy made him laugh. He made me cry. All in a day’s work for a mom parenting kids who live on the edge. And he told me that you usually see a connection between a PANDAS diagnosis and vaccines. Not in my world. So it seems more complex, again.

Sometimes I forget how sick my kids are. Especially the little one. I just keep keeping on, and the doctor visits are highlighted with all the good. The “upward spiral” and the “good grades”. And other days, we look at the shadow. The under belly. The sh#%(.

My kid is sick. Some days, I just don’t even want to talk about or think about how complex his issues are. The hardest part is that so far, I haven’t been able to find anyone who really gets what’s going on with him. If I were a different kind of parent, I might just look at him, ignore the dark circles under the eyes and just keep keeping on. But I don’t. I push for answers. I push for him to get well. I hope that the teenagers frankenstein-looking lymph nodes doesn’t mean another flare is on its way, or that I’m too busy helping one kid that I’m playing ostrich with the life of the other. I search for treatments, money, the next great hope for a cure. Heading down to the lab to get some subclass deficiency and immune issue tests. But waiting until AFTER Valentines Day. Blood draws WIPE this kid out.

It’s not one thing. That, I know. If it were, I’d be selling some sort of MLM product that had cured us all. Instead, I’m back to the Rubik’s cube. Or just STILL HERE.

 

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.

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.