My journey through Lyme Disease- Healing my body and mind.

Dr. Smith Update and Silly Feet

It’s been 6 weeks since my treatment in Idaho with Dr. Tony Smith and I know many of you have been asking how I am doing, so I thought I would give you an update. Before I go on, there are two important things that you should know about my treatment with Dr. Smith and why it has not gone the way that things usually go.

First: I am still on intense antibiotic therapy. Before going to see Dr. Smith, I had been on antibiotic therapy for nearly a year and a half. During that time, I made huge gains in recovery and I was not willing to risk losing that by going off of antibiotics. Dr. Smith has told me that I am his first patient to refuse to go off of antibiotic therapy following his treatment. He doesn’t know what to expect or how that will effect the outcome of his treatment. Antibiotic therapy is not effective for some people, but it has been hugely effective for me, so I plan to remain on antibiotics until my symptoms are gone. For folks who can’t tolerate antibiotic therapy, Dr. Smith’s treatment is ideal and if you go see him, I would love to know how things go for you.

Second: I have a co-infection called Protomyxzoa Rheumatica (herein referred to as PR). PR is a newly discovered protozoal infection (similar to Malaria) that complicates my treatment. To read more about PR, go here. Dr. Smith has recently started studying how he can treat PR during the Lyme treatments and he attempted to treat me while I was there. However, I got an email from him a couple of weeks ago saying that the method he was using to treat PR was not correct, but that he has it figured out now and wants me to come back for free treatment as soon as possible. He doesn’t think my treatment outcome will be ideal until I can come back and have PR treated correctly. I really appreciate the personal email that I received from Dr. Smith, but what I appreciate more is that he is willing to openly admit that he was wrong and offer to try again for FREE. How many practitioners have you heard admit to being wrong and willing to try again? I really respect that about Dr. Smith. He believes in what he does and he truly wants to see folks get well. Thanks Dr. Smith! I am going to try to make it back to his office for a quick visit in December.

So, considering both of those things, I don’t think it’s fair for me to report on the success of his treatments without receiving full and proper treatment. I will report back about 6 weeks after my final appointment in December. Until then, my journey with antibiotic therapy continues!

Moving on now, let’s talk about feet! I have struggled quite a bit with my feet recently. Currently, my toes look like this:


Before I started antibiotic therapy, I had two toes on my left foot that would occasionally swell, burn, and get little red dots on them. I found no doctor that could explain this mystery other than diagnosing me with Raynaud’s. My feet go from being hot, red, and swollen to being freezing cold and turning purple. Sometimes they are hot AND purple. The little red dots become sore and eventually “bleed” into each other and become red blobs. My feet hurt to stand on in the morning, they swell with activity or heat, and sometimes I have sharp nerve stings in my toes. My doctor thinks that my feet issues are related to my co-infection, Bartonella. Lately, my feet have gotten much worse. Instead of the problem being two toes on my left foot, it’s now all toes on both feet. Considering this, I called my doctor. She is certain that it is Bartonella and put me on yet another gnarly antibiotic. This time, Bactrim. I am currently on Plaquenil, Minocycline, and Bactrim. Ugh. My boor body.

I have a couple of my own theories about my feet. My first theory has to do with the above-mentioned Protomyxzoa Rheumatica (PR). According to Dr. Fry, the doctor currrently performing the research on PR, the organism infects blood and behaves much like malaria. I have significant amounts of biofilm in my blood from this organism. I think it has decided that my feet are great places to live for some reason and it is damaging the blood vessels in my feet, leading to burst blood vessels in my toes (the little red dots) that then bleed into red blobs. That’s the first theory.

My second theory is one that may be hard to grasp for some, but it makes the most sense to me. My second theory is that the damaged vasculature in my feet is from damage to my sympathetic nervous system. Your sympathetic nervous system can cause random vasoconstriction and vasodilation that would explain the sudden and random temperature and color changes and burst blood vessels in my feet. It feels like a response of my nervous system to me. Also, something else interesting is that when I have a particularly intense session with my somatic psychotherapist, my foot or feet will swell, get hot, turn red, and burn. Sure, it could be that the emotional stress of those sessions aggravate infection in my feet. But, my point is, whatever is going on in my body, is sometimes (maybe always?) directly effected by my thoughts and emotions, subconscious or not. This is a difficult concept for some, but my experience with chronic illnesses has shown me that there for sure is a connection. It doesn’t mean that working through your “issues” will cure your body of infection without antibiotics, but we can no longer deny that there is a link, even if it is subtle at times.

Has anyone else had experience with feet that look or behave like mine?


Johnny Rash and the Burning Ring of Fire

Okay, well, it’s not actually a ring. It’s more like a rash all over my entire body. I have developed a lovely rash from head to toe. It is exactly the same as the rash I got immediately after my initial tick bite in 2004. It is also accompanied by the same symptoms as when I initially got bit: constant post-nasal drip; sinus pressure, fatigue, increase in joint-stiffness and pain, overall flu-like feeling. I feel like I am 22 again! Don’t I look it?Image


So, you may be like me and are asking, WTF?! What is the deal with this rash? I would love to talk to somebody who got infected with Lyme Disease in Northern Italy (where I was infected) and ask them about their symptoms and their treatment experiences. Since there are tons of strains of the Lyme bacteria, it may be that the handsome Italian version behaves a bit differently than what we have here in the US of A. So, if you know anyone in Italy who has gotten Lyme there (and went initially untreated), please send them to my blog or email.

Anyways, I have a few theories about WHY this rash is happening:

1) I started a new treatment cycle on Monday that involves the addition of Oregano Oil to destroy biofilm and expose bacteria (more on that amazing herb later) and added the intense antibiotic, Clindamycin. Perhaps I am finally destroying enough biofilm that the little buggers are actually exposed to my immune system and antibiotics and this rash and accompanying symptoms are a herxheimer reaction, which would be a GOOD thing.

2) The rash and associated symptoms are caused by thriving infection (Lyme or various co-infections). That would be, obviously, a bad thing.

3) I am having an allergic reaction to Clindamycin. Also, bad thing.

4) The combination of the treatment I did with Dr. Smith as well as upping my antibiotics has finally really packed a huge punch to the bugs and it’s a herx. Good thing.

5) I have some sort of crazy other virus or infection unrelated to Lyme. Bad thing.

Basically, you can drive yourself crazy trying to figure out exactly what the heck is going on sometimes when you have Late-Stage Lyme Disease. I’m sure all of my fellow Lymies know what I mean. It is generally a futile effort. So, last night I decided to spend minimal time trying to actually figure this damn thing out and just laugh about it. (Well, and of course, I emailed and called my doctor).

My friend Nikki started texted me song lyrics with the word rash replacing the actual words. It was super corny, but I like corny jokes, so I laughed a lot. Laughter is an important part of recovery. My two favorites:

“Like a rash (Virgin). Scratched for the very first time!”

“I like red rash and I cannot lie, you other brothers can’t deny, when a girl walks in with an itty bitty waist and a red rash in yo face…”

I know, I am lucky to have such a good friend. Feel free to create your own rash jokes in the comments below. Hang in there, Lymies! Laugh about it when you can. 🙂 Much love, Lyndsey