Shannon A. from New Hampshire
How long do you believe you have had Lyme?
5 ½ years.
How long did it take you to get a diagnosis?
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw my primary care physician at least once a month for years. I saw a naturopath who specialized in Celiac disease for my food sensitivities. I saw a doctor who specialized in Endometriosis and PCOS to check my hormones because they were going crazy, as well as a gastroenterologist - and I saw multiple orthopedic doctors for various long-lasting injuries that were eventually attributed to Lyme (a torn hamstring and a very long lasting metatarsal stress fracture).
Were you diagnosed with anything else before Lyme? If so, what?
Gluten intolerance, various food sensitivities, Raynaud’s disease, walking pneumonia, multiple sinus infections, and my favorite: I was told that I had a bone disease that was affecting the second metatarsal of my left foot, where I had a recurrent stress fracture. I was told that there was not enough blood getting to the bone and that without a surgery (that might not even work) the bone would slowly disintegrate, and the pain would get worse. Of course, about a year after I found out I had Lyme disease and started aggressively treating it, the recurrent stress fractures and bone pain resolved.
Anything else you would like to share about trying to find a diagnosis:
I honestly do not know if I would have gotten a diagnosis when I did if I had not been bitten by another tick. The first tick bite I got, when all of my symptoms began, did not result in any kind of rash, and since I had never actually seen the tick, I did not get any kind of treatment. I was tested for Lyme several times in the first few weeks after my symptoms appeared, but all of those tests came back negative, something that wouldn’t be surprising to a Lyme Literate doctor, but which confirmed for my doctors at the time that there was no way I could have Lyme, even though I had all of the classic symptoms. Finally, three years later I got bitten again, which left me bedridden, with a large Lyme rash, something which finally convinced the urgent care doctor I saw to give me antibiotics. Of course, I only got a two-week prescription, and I knew a needed more. From there, I found a Lyme-literate MD (LLMD) who would treat me long term.
Unfortunately, just finding an LLMD was not enough. I ended up leaving my first doctor after a year because his treatment plan was not holistic at all, and left my body rundown by very heavy antibiotic use. Perhaps the most important thing to take away from this is that the journey doesn’t end with simply finding a doctor who will treat you. It’s important to find a doctor who will listen to you and treat you according to how your body responds, because every patient requires a slightly different protocol.
How long have you been treating Lyme for?
I have treated Lyme and coinfections for 2 ½ years.
Do you have any coinfections? If so, which ones?
Basically all of them: Babesia, Bartonella, Ehrlichia, plus a lot of underlying infections which were not tick-borne, but which my body was more susceptible to because of the Lyme. The worst of these underlying infections was toxoplasmosis, something which has been found to be a problem for a lot of Lyme patients.
What types of treatments have you tried?
I started with a typical heavy antibiotic treatment, and continued it for two years. Last summer (2016) I began seeing a magnet therapist. This therapy uses magnets to help rid the body of toxins, and it is the most effective treatment I did.
I also did a lot of EFT, which stands for Emotional Freedom Technique. This is an energy therapy, which helped me move the emotions I had around being sick to allow for health.
List up to 5 of your biggest (past or current) symptoms:
Nausea, body aches and pains, migraines, brain fog, and body weakness.
What is the biggest way that Lyme has affected your life?
It has literally changed who I am. I do not think I would be the person I am today if I hadn’t gotten sick. I choose to see my illness as a blessing, because it helped me straighten out my priorities and realize what is really important at a young age.
What do you wish people knew about Lyme Disease?
That it is a debilitating illness. I think it should be regarded like cancer, because the treatments are very similar, and Lyme disease can be as deadly and difficult to cure as cancer is. I hope that someday soon, health insurance will cover treatment, doctors will know how to diagnose it, and people will be able to get the treatment they need to beat this disease.
Any advice for someone newly diagnosed with Lyme?
Find a great doctor. Find a magnet therapist. Ask a lot of questions so you understand your treatment completely. Do some kind of emotional or energy therapy like EFT. This disease needs a whole body treatment.
Fun fact time! What is your favorite thing to do in your free time?
I love to write. I also love to be active, to work out, and to be outdoors.
To find out more about Shannon's journey, please go to her website: www.defeatinglymedisease.com.