My Appointment with an “LLMD” – Lyme Literate Medical Doctor

Before I could even get an appointment with Dr. Boucher, I had to fill out an extremely comprehensive Tick Borne Diseases questionnaire that included a listing of possible symptoms with each symptom being rated from 0-10 (with 0 obviously being none and 10, severe). I also included a bit of my history.

I advised Dr. Boucher that my ELISA was negative and that my GP recommended that I go to the US if I wanted to pursue a Lyme diagnosis. I told him that I thought I had Lyme and/or other tick borne diseases based upon the number of symptoms that I had that affected most, if not all, systems in my body.

I had so many symptoms that didn’t fit into the little boxes on his questionnaire (in my opinion) that I also described a few in greater detail. Although I never saw a bull’s eye rash or a bite with a rash on it, I did experience a couple of warm rashes over the years. At one point my left ear felt very hot and my husband said it was red but nothing else was seen. Occasionally the tip of my tongue would tingle and feel like it was swelling up to the point I would bite it if I was chewing. I thought that I must have a slight allergy to something that I was eating but nothing was ever determined.

I had things happening like my my right ear drum vibrating with certain sounds; extreme issues with my eyes that included blurriness, floaters, etc.; I would wake up at night because my ear was so itchy and felt like something was crawling in it; massive sweats where I couldn’t even walk at a slow pace without sweat running down my back and everywhere else; I would feel faint; my hands and feet were constantly going to sleep; I would walk into walls, fall down stairs, trip – a lot; I had my first ever “panic” attacks; couldn’t concentrate to read anymore; and I could go on and on – and on!

My first appointment with Dr. Boucher was over an hour long! We went over my symptom list and talked about the severity of each. Based upon my symptoms, he clinically diagnosed me with a tick borne disease, and suggested that I may have more than one. Because he felt that I had Bartonella, my initial treatment was with “A-Bart” which is a Byron White herbal formula for immune support and microbial defense. He noted that you have to deal with any co-infections before treating Lyme. He also advised that he found that people that use the “A-Bart” prior to antibiotics, didn’t seem to have as bad a Herxheimer Reaction to the antibiotics. A Herxheimer Reaction (or Herx for short) is a   detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, sweating, chills, nausea or other symptoms.

The A-Bart is a VERY strong herbal medicine and you have to build up usage S L O W L Y! I did what I was supposed to do but I have to say it did give me what I guess was a Herx reaction whereby I felt worse before I started to feel slightly better. I took that mixture until my next appointment with Dr. Boucher which was approximately a month later. We again had a lengthy discussion about my symptoms and whether any improvement had been seen after which he started me on antibiotics. He also recommended Resveratrol and Artemisinin as well as a multi-vitamin/mineral, Vitamin C, Vitamin D, Omega 3 and Magnesium.

At every appointment we went over my updated symptom chart to see where improvements were made and if anything had stayed the same, or gotten worse. Dr. Boucher then changed the treatment protocol accordingly. We continued to do this until I received word that his practice was closing in February of 2013. I had been seeing him since September of 2011 and had become significantly better during my treatment; however, I still had a few remaining health issues that I have since been trying to self-manage though diet, supplements and alternative treatments.

I wanted to write about my experience with a “Lyme Literate” Doctor as I had heard several times that Doctors were not allowed to clinically diagnose Lyme because there were so many other illnesses with the same symptoms. However, my Doctor did not diagnose me based on one symptom or even two or three. He clinically diagnosed me based on my over 45 symptoms that I had at the time. He diagnosed me based upon the fact that I lived in an endemic area and that my cottage is in an endemic area. He diagnosed me based on the fact that I had travelled to the northeast United States, which is highly endemic for Lyme. He diagnosed me based on the fact that my symptoms would come and go and would migrate throughout the body. All these things gave him a very good comfort level with his clinical diagnosis as they would any “Lyme Literate” Doctor.

There was research undertaken that apparently raised the issue of misdiagnosis and that three people had been diagnosed with Lyme but had actually had cancer or something else. My first question when I heard this was did they have Lyme or another tick borne disease as well?

There are people that are being diagnosed with any number of auto-immune illnesses with similar symptoms that I had. Are they misdiagnosed?

I think if you looked at all of the people that have received a misdiagnosis, you will find that most of them are Lyme patients that were told they have Fibromyalgia, Chronic Fatigue, MS, early onset Alzheimers, Irritable Bowel Syndrome, etc., etc., etc., rather than people that were told they have Lyme but had something else wrong with them.

Not everything is Lyme, but the percentage of ticks carrying disease is steadily growing and Lyme and other tick borne diseases needs to be taken more seriously with a higher level of concern and respect! Doctors certainly need to become better educated and more aware and to give consideration to tick borne diseases when a patient presents with a multitude of symptoms, affecting more than one system, that come and go, and migrate.

If you refer to the Canadian Lyme Disease Foundation symptom list, you will note that it is suggested that if you have over 20 of the symptoms, then tick borne diseases should be given consideration. I have not seen anyone, anywhere, suggest that if you have one or two symptoms (other than the bull’s eye rash of course) that you absolutely have Lyme.

What is the problem? Why are Doctors that treat Lyme looked at so poorly? Why is this an issue – at all? So many questions! Not enough answers!

 

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