Sorting It All Out

Glad you came back to see what I found out searching the internet for information on how to get better from lyme disease.

Here's what I found out: 

There are 2 different camps of treating lyme disease. (those who don't believe in the CDC/IDSA way of dealing(or not dealing with) with lyme don't count.)

The first way of dealing with it is with a lyme literate doctor who treats with long term IV and oral antibiotics, most of which is usually only covered by insurance for a month, possibly longer if you're lucky.  I would have had to travel 3 hours to see the doctor in Raleigh or travel 6 hours to Washington DC to see a well known doctor who had been run out of North Carolina because he treated with long term antibiotics and whose medical license was taken away. (Never mind that he was the MD who developed the protocols for treating HIV back in the 80's)

 I was deeply upset when I believed this was the only way lyme could be treated. 
Why? Well, I learned that an 8 month course of multiple IV antibiotics cost about $60,000 and that didn't include the supplies that went with all of that or all of the oral antibiotics (you need several at a time) and it didn't include supplements. These doctors also included herbal therapies along with the antibiotics, especially because those who've had lyme a long time (chronic lyme) don't get better with antibiotics alone. 

 I realized that those with lyme who were treating this way were spending upwards of  $150,000 to $300,000 over the course of 2-3 years to get better. I cried for several days when I thought this was the only way lyme could be put into remission because I didn't want to put my family in the poor house. After building a life and saving for retirement for all these years, I wasn't going to leave our family broke, with no savings for retirement. The other upsetting option was to not treat and continue to have MS/Alzheimers/ like neurological symptoms and decline to where I would have to be put in a nursing home, which also is very expensive. I was only 54 at the time.  To be even more depressing, some people die of untreated lyme disease, and even worse, lyme disease has a very high suicide rate. 

All these things were running around in my head. 

In December. Right before Christmas.

I felt depressed (which is a symptoms of neuro lyme). 
To quote Mrs. Figg from Harry Potter and the Order of the Phoenix;  "it was as though all the happiness had gone from the world". 

Ah, but there is hope...

Thankfully, within a few days of searching the internet,  I came across the  book Suffered Long Enough, by William Rawls MD. (he had lyme and fibromyalgia and healed himself). This book gave me hope that I could get better. Rawls mentioned the book that helped him get well, so I ordered  Healing Lyme by Stephen Buhner. I ordered a 3rd book Why Can't I Get Better by Richard Horowitz.

I realized after reading Suffered Long Enough that I wanted to go see Dr. Rawls and made an appointment for mid-January. His office is near the North Carolina coast, and only a 5 hour drive from our home, so it would just be an overnight stay. My integrative doctor suggested the doctor in Raleigh, but I wasn't sure that his treatment was the way to go. Long term antibiotic use can wreak all kinds of havoc with your gut and immune system and it didn't seem right to me. Plus, the initial visit, including labs, would probably have been at least $2,000- $5,000, most of which would probably not be paid for by my insurance.  Most lyme literate doctors don't take insurance. Most lyme literate doctors treat with IV and long term antibiotics, which are not covered by insurance because the CDC believes that lyme is cured by a 3 week course of doxycycline, which it is not. 

Back to the hope part...
Dr. Rawls had gotten better, not with antibiotics, but with real food and ...herbs. 
I know what you're thinking and it's not cannabis (although many lyme patients use cannabis oil). I didn't know anything about herbs and only had experience with taking one herb in the past(hawthorn for lowering blood pressure). I had no idea there were so many studies done on herbs healing so many ailments and thought treating with herbs was just an old wives tales. I knew about vitamin and mineral supplements helping ailments, but for some reason, herbs seemed too far out there for me. 

 After reading Healing Lyme, I couldn't believe all the technical information on herbs healing lyme disease. The book includes a LOT of footnotes and references. I insisted that my husband read this book because I knew he had always been the type to blindly trust doctors and to roll his eyes at any suggestion that alternative medicine might work. He has since come around.


The Diet
Yes, there is a diet... I found out I tested positive for lyme a few weeks before Christmas. About a week before Christmas, I found out that many doctors put people on a no sugar, no dairy, no gluten diet, because those things cause inflammation in the body and your body can't fight lyme and the food you're eating too. So that's what I did.
I also tried to make my diet 50% vegetables. One problem. I'm a REALLY picky eater and don't like many vegetables. I went on the diet anyway.  

Yep,

 no chocolate or Christmas cookies. 

No buckeyes. 

No limeade, even mixed with mostly sparkling water. 
No tea with milk and sugar in the morning.

It's our Christmas tradition for my husband to make homemade cheese ravioli and I made an exception to my diet to have 3 ravioli. I also broke the diet on New Years Eve and ate ONE slice of homemade pizza (another tradition). But that was it.


My husband drove me the 5 hours out to see Dr. Rawls in January. It was good for him to hear what the doctor had to say. I figured seeing him would help determine whether I wanted to go the herbal route or the long term antibiotics route. I didn't totally trust my brain at this point. I still wasn't sure, but my thought was we could give Dr. Rawls' program a 4 month trial. If I hadn't made any progress in 4 months, then I could always go see the doctor in Raleigh for antibiotics.

  Since I already had positive lyme labs and many symptoms, Dr. Rawls didn't feel the need to do any of the expensive testing. There are so many tests that are ordered by lyme literate doctors, but they are needed to find out which antibiotics you'll be put on and if you might have a gene mutation that doesn't allow for your body to detoxify all the endotoxins the bacteria create as they die. Antibiotics are hard on the body. 

Treating with herbs is different. Herbs work on building up your immune system to help your body kill the bacteria , and some of the herbs are microbial. Some herbs and supplements help with the herxheimer (herx) reactions and help you detoxify the endotoxins caused by the bacteria die off. Herxing, as it's called, causes your symptoms to get worse and makes you feel HORRIBLE. I experienced this when I took antibiotics and the first two weeks of the Restore program. Ah, but I'm getting ahead of myself. Where was I?...oh,
I can always do labs later, if needed. 

Dr. Rawls has a website that he offers protocols for different conditions and if you have lyme, it isn't necessary for you to drive or fly out to see him.  He offers a program specifically for lyme on his website  Vitalplan.com. There are herbs for other ailments, as well. You can go to his website to view the details. (I don't make any money off his website and he doesn't pay me for any referrals) Once you sign up for the program a phone appointment is scheduled with someone on his team. Dr. Rawls also does phone appointments for a reasonable charge. You can also email if you have questions. I started on Vital Plan's Restore program about 10 days after seeing doctor Rawls.

There are also other herbal protocols for lyme disease that I've since learned about: Cowden, Byron White, Klinghart and Buhner (which is the protocol that Dr. Rawls based his program on). These are all protocols you can do on your own, with a doctor, naturopath or herbalist.  The key thing is to find someone who knows the protocol you choose. 

The Progress:
After being on the no sugar, no dairy, no gluten near 50% veggie diet for a month, most of my neuro symptoms dissipated or gotten better. I still have numbness in my feet, still have trouble with words and spelling and focus, but the numbness in my face and weird feelings in my throat and feeling drunk after eating; those are gone. Those weird feelings made me feel like I was crazy. Kind of like when you get the flu and your teeth hurt. (or maybe that's just me)

Oh, and I can drive now, which is big.

More Progress:
About week 3 of being on the Restore program, I had 3 good days of energy that week and 2 more good days the following week. This was exciting!

Where I am now:
I am on week 7 and into the 2nd week of a new and improved set of supplements. My energy is improved and when I am sitting down, I almost feel normal. I still have days where I don't feel that well. Those setbacks are to be expected.
I am hopeful that I will be considerably better after 4 months, but I plan on being on this program for at least a year. 

I'm still on The Diet and plan to be until at least December. The silver lining in all of this is that I've lost 18 pounds! Secretly, I'm hoping to lose 10 more because I'll be back to where I was when we got married 27 + years ago. I will definitely be needing a new wardrobe. 

Thanks again for all the nice comments and shares of my original post. 
I am overwhelmed at the response.

I hope today is a good day for you.

Pam

UPDATE: I no longer recommend the Mitochondrial Support formula or any other supplements that have Alpha Lipoic Acid. It is  a heavy metal chelator and is thought that it can move mercury to the brain. I do recommend the other 3 formulations and the rest of the Restore Program from Vital Plan.