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Dec. 4th 2014: Interview Questions for Taos News Ariana Kramer interviewing Melissa Crabtree about Lyme Disease Diagnosis

Posted on December 4, 2014

Interview Questions for Taos News Ariana Kramer interviewing Melissa Crabtree

 

1) What, if anything, would you like to share (with the general public) about your personal experience with Lyme's disease?

 

First of all, like many people who have the disease, I didn't know I had it for a very long time. The degradation of my health was disconcerting enough, but not knowing what was wrong with me, and the negative effects on my life, and the self-loathing from lack of a diagnosis were particularly damaging. There are years of my life that I have lost due to the lack of insight on my part, and on the part of the many healers and medical professionals I appealed to over the years. I'm not blaming anyone. We've collectively been very slow on the uptake as to how prevalent and devastating this disease is! There's been an incredible amount of loss in my life. It's tough to accept that sometimes, on top of all the Lyme symptoms...

Four years ago, I was referred to a neurologist because of the disruptive and mysterious cognitive symptoms I was having. They did all sorts of tests, like MRIs and brain-scans. After about 4 hours, they told me I must have emotional problems and told me to see a counselor. I have been to allergists, endocrinologists, and others over the years. None of them ever thought to test for Lyme and co-infections.

When you have an entire medical establishment with huge gaps in their knowledge of this epidemic of infectious and autoimmune diseases telling you what they've been coached to say: that you just need to take an anti-depressant and see a shrink...that's damaging to the entire population of sufferers. I knew deep in my being that something was very wrong physically and neurologically. But like so many Lyme patients, I was forced to deal with health problems piecemeal, as there was no medical professional who had the training or the curiosity to look at my Big Picture. When I finally did see a psychiatrist several years ago, he told me I just had severe focus problems and prescribed me ritalin. That stuff did not help at all and I quickly discontinued taking it.

 

 

2) When did you first find out that you had Lyme's disease? Do you know how long you have had it?

I was finally tested for Lyme disease in Albuquerque this fall of 2014 and I received my positive results at the end of October. There had been a myriad of disturbing symptoms leading up to this year. I was diagnosed with Hashimoto's Thyroid Disease back in 2003, yet these past 5 years my thyroid levels were completely out of whack. I kept getting major  allergies to more and more things like animals and plants, and sometimes ended up hospitalized with asthma last winter. This past spring I  started to get random heart palpitations and heart pain. This summer, as I was getting ready to open some shows for Eliza Gilkyson, I got out of bed and I literally could not walk. I could not bear any weight at all on my foot for two days. I thought I should go see a doctor since I could not remember doing anything to crush my foot. In fact things were getting so weird that I thought I might have M.S. But after 48 hours, the pain was gone. It was completely random and strange. I headed out to Durango to perform with Eliza, and for a few weeks these symptoms disappeared. Yet now that pain has come back. The scariest thing has been random complete disorientation sometimes. It was almost as if I turned 40 and I was getting these intermittent random pre-Alzheimer's symptoms. (The neurologist mentioned above also tested me for early Alzheimer's disease but that test came back negative.) So these past few years have been especially confusing and stressful for me. While I was in a state of confusion last spring, not knowing what was wrong with me, a few particular books and breathing practices helped me so much. One can be found at the Neem Karoli Baba Ashram here in town. It's a book by Ram Dass called "Polishing the Mirror" In it he talks about how each and everyone has their own Life's curriculum. It's not something to be judged as bad or good. It just is. So I meditated a lot and thought "well, this uncomfortable situation must be my life's curriculum. When I finally got diagnosed with Lyme disease this fall, it's as if I finally found out which specific class I had signed up for. There was some relief in knowing that now I could find the teachers doctors and books and herbs and medicines I need in order to take this particular "Lyme Disease" class that I have signed up for! I plan to ace this class and finally tell Lyme disease to leave my body. Ram Dass's words and the Taos ashram have been such a blessing to me, as well as my sweat-lodge community and sangha.

Last summer, when I was still in a very confused state, I was helped greatly by a breathing practice that is outlined in Michael Browns book: "The Presence Process". I have been diligently doing this breathing practice for two years now, and I  believe this made an impact in helping me to finally get to the root cause of my debilitating health issues.

Around the same time, an integrative healer friend of mine, Marie Luna, who has dealt with the disease a lot amongst her family and friends, was able to step back and see my "Big Picture." She heard I had Hashimoto's, a thyroid imbalance, and she knew I'd had some cognitive issues, along with lots of bodily pain, and joint and tendon issues, and some hand tremors. She put it together, and said, "I think you have Lyme." I am so very thankful for her.

 

I think I've had Lyme for many years. The docs seems to think this as well. it has gone systemic. Apparently It is in every cell, tissue and spinal fluid of my body..

 It is true that for most of my adult life, my other career besides music has been guiding river , hiking ,skiing, and Sea-Kayaking trips in many of the western united states as well as alaska and central america. So the Lyme infection may have happened at some point during my long wilderness guiding career.. However if you go way back to my childhood, I grew up ski racing in vermont, and my grandparents lived in Connecticut, (the lyme tick hot bed capitol of the universe)  and my cousins lived in cape cod, another ground zero site of lyme disease. We visited them often when I was growing up.  One doc said that I may have gotten infected at a very young age... and my body has done a great job at warding it off as best I could until the last 5 years, as symptoms became more and more debilitating., and now have gotten much worse.

 

 

3) What kind of test did you take to find out your diagnosis? Why did you choose that particular test?

My friend who suspected I had Lyme sent me some resources and articles and links on you tube. Through her knowledge and my own research I found out that some of the more well-known folks who have suffered from Lyme (like Musician Jesse Colin Young, Professional Freeskier Angeli VanLaanen, and musician Kathleen Hanna) all recommended that the best Lyme Disease lab test was through the Igenex lab. Dr. Richard Horowitz, a famous Lyme Literate MD, also recommends the Igenex western blot test. This tests for two strains of Lyme instead of just one.

I found a medical professional in Albuquerque who has experience with Lyme patients. She recommended the Igenex test as well. It's also the test that folks in Lyme forums talk about, and a lot of doctors use it.  My Lyme Disease test came back gangbusters positive. Lyme Disease tests are notorious for false negatives, because the organisms very successfully "hide" or sequester in your tissues, staying out of your blood where they would encounter the immune system's wrath. So in some ways it was a blessing to get a positive result. I finally knew that there was really something actually physically wrong.  My friend calls this thing a Blurse.. when something is a blessing and a curse at the same time..

 

4) Are there any helpful resources that you have found that you would recommend to others with this disease? Please list them.

For me personally the documentaries and videos out now about Lyme have been very helpful. Professional Freeskier Angeli Van Stephen put out a video on Vimeo called Lymelight. It is a 30 minute movie about her journey with Lyme disease, how she was misdiagnosed for years and in 2009 was finally diagnosed with Lyme Disease. So she quit her career, went thru hardcore treatment for 3 years and then went back to the US ski team! She presents the seriousness of the disease yet adds such a positive outcome and outlook she has become an inspiration for me. Plus there is great ski footage in there as I used to be a ski racer when I was a kid and I raced in the eastern junior olympics. So her story has given me hope. The other videos are "Under Our Skin" on you tube and "The Punk Singer" the story of Kathleen Hannah on netflix. Jesse Collin Young did a wonderful interview which also influenced me, when he told about his own story with Lyme disease. 

Stephen Harrod Buhner has a great way of explaining what the Lyme spyrochete and the co-infections are all about. He has a blog and a book called Healing Lyme. He's a master herbalist, from a long family line of doctors. So he has a great way of explaining things medically but also holistically. HIs herbal protocols can bring relief, and give you a little breather while you decide your overall long-term plan. Some people have healed completely with his protocols.

Some of the forums are a real bummer, with people just complaining constantly. I understand having a listening ear for one another, but it's important not to get into a downward spiral. Choose the forums that have people who are pro-active, and are helping one another by sharing crucial information. There are some good, pro-active groups on Facebook. That's a good way to pick up info on supplements, medical protocols, herbs, and just get a sense generally of what is working for people who are actively seeking healing.

Books and youtube interviews and the Facebook page of Dr. Richard Horowitz are a very important resource. His book is one of those gems that you wish was mandatory in medical school! He has case by case explanations of how he arrived at different decisions. And he really treats every person differently. That's an important distinction that even a lot of holistic healers don't get! People with these infections all have very different constitutions, and different symptoms and reactions to the disease, and to medications, and to remedies.

Don't be afraid to seek out people who have been through the same thing, for moral support. But also, be very choosy about who you talk to, or who you let talk AT you.

 This can wear you out! Get out of that eddy, and float your own boat on down the river of your own healing.

.

 

 

5) What have been the most helpful things that doctors, friends, family, strangers have done for you since your diagnosis?

Recently when I was having weird cognitive symptoms and heart pain, a friend from the rocky mountain song school from Lyons folks fest took care of me in Denver for a week.. I passed out.. she brought me to her naturapathic doctor and set me up for one months worth of a major protocol. Kirstie Segarra at Santosha Yoga, Suki Dalury at Shree Yoga, Rebecca Borriego and Orion Paulden  qi gong practitioners, Pricsa Winslow Bradley a Feldenkrais practitioner, and chiropractor Lucy Whyte Ferguson, and Beth Searcey have all been so supportive. 

All those I've encountered who are compassionate and caring and understanding! Those who take it seriously that I have been diagnosed with  Lyme disease...and understand my commitment to healing .Those who have offered to make healthy meals and help me with tasks when I am too tired to do so. , Kate Mann and all the musicians involved with Lyme - Aid have been incredibly helpful.

 

6) What one piece of information do you think is most important for people to understand about Lyme's?

It's a weird and clever and ravaging organism. It's called the Great Imitator, because it mimics so many other diseases, throwing you and practitioners off it's trail.  As well as a tick bite, It can also be transmitted from an infected Mother to fetus. Read up on it, and help others to be preventative! be KIND and patient to your loved ones with mysterious, multi-symptom, chronic illness. This is one of the most tortuous things that can happen to a person. Cut them some serious slack. Help them as much as you have time and energy for, within your good boundaries. Lyme disease patients do not always look sick even if they are in tremendous pain in body and mind.  Treasure your own health! It's precious.

 

7) Are you still playing music these days? Are you performing?

Music, like the river-running, is my Lifeline. I can't work hard right now in either of these arenas. 

The random effects of each day dictate when I feel I need to be in bed, or can be out playing music. The ever-changing symptoms create an inconsistency in the lives of those with this disease. I have a few more gigs scheduled locally, but I made sure I have a dependable musician playing with me in case they need to take over. I have cancelled all gigs out of town.Depending on how treatment goes, I will play music as much as I can as my energy allows.

8) Have you been able to continue with songwriting?

This has been a painful topic for me because of the cognitive symptoms associated with Lyme disease. Brain Fog is an understatement. No, I have not written a song in a year and a half. I hope my creative songwriting comes back as I heal, because it brings me a lot of joy. I also had to cancel most raft trips this year. How can I be in charge of other peoples' lives when my own life is so compromised at the moment?

 

9) Is there any kind of support you need that you would like me to include in the article? Is there a way for people to financially contribute who are not able to go to the concert?

Yes! Thanks for asking! If they go to my website, http://www.melissacrabtree.com/, they can check out and enjoy my music, and make a donation to Lyme-Aid on my homepage..

 

10) Please say a little bit about the Lyme-Aid benefit and how it came together.

Lyme aid benefit came together with tremendous love and support by my musician friends. As soon as I was diagnosed I told several musician friends including Kate Mann, Lisa Joyce, Don Richmond, Chipper Thompson, Jennifer Peterson and Don Conoscenti, Justin Dean, and many of the other musicians listed in the line-up.Kate Mann pulled together an amazing line-up, Chipper did the poster, KTAO decided to host it, Robin Cunningham offered to run a silent auction. I was busy having major Lyme symptoms; having to go back to Albuquerque for a doctors visit and to get EKGs for my heart, etc., while all my friends were doing this amazing job at organizing a love fest! I am so thankful for them.

 

11) Are you planning to attend the Lyme-Aid benefit?

Yes,  and revel in the kindness and love of it all! ---then go to bed for 3 days after. But it will be worth it to feel all that LOVE.

 

12) Is there anything else you'd like to say?

I am empowered to take on this next task of liberating myself from Lyme Disease. I am ready to reclaim my body back from an abusive impostor that has been living in my cells and tissues for a long time.  I hope that we all learn to take better and better care of ourselves, of one another, and of this precious world we are in, and the Earth! Those are really the answers to avoiding situations like the one I find myself in. Treading lighter, and learning from and healing from Nature is the answer! 

I want to express my gratitude for all my friends who have rallied together to support me and to create Lyme Aid! 

 

( I think it would be good to give the line up of musicians in the paper:)

 

we will start at 3 and go till 8 pm

everyone will have 1/2 hour set from on to off.  Participating

musicians:

 

Don Richmond

Chipper and Kim

Lisa Joyce

Pot Creek String Band

Brent Barry

Bob Andrews

Jennifer Peterson

Justin Dean

Bone Orchard

Kate and Mark (or all of Muddy Mountain Orchestra)

Don Conoscenti

Jimmy stadler 

patrick turnmire, omar rane