This afternoon I spent my energy at the State Capital complex, at a hearing for a bill to protect docs who are brave enough to treat Lyme Disease.
It fascinates me how angry, how condescending and how closed-minded the IDSA and the State Department of Epidemiology are. Is it about Greed? Is it about power? It certainly isn’t about Science. If I had to be right all the time like they do, I would have no friends at all. And if all medicine had to be based on half-assed science, we would all be dead.
The experience inspired me to dig into part two of the Q & A. 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.