Lyme Disease AwarenessMay 2014

Our Stories, Our lives, Our bond! WE are all going to BEAT this!

Josie Graziano

Josie Graziano

• When did you first experience symptoms? *July 2007

• Did you know you had been bitten by a tick? *I knew I had been bitten by something because it was itchy. However, I did not know it was a tick.

Josie Graziano

• What were/are your symptoms? * My symptoms are: Feeling like I am going to faint, anxiety, heart palpations, racing heart, extreme head symptoms, chest pain, shortness of breath, nausea, insatiable hunger and 150lb weight gain, and all over weakness.

Josie Graziano

• How many doctors have you seen? *I have seen over 15 doctors

• Were you diagnosed incorrectly before you received your correct diagnosis of Lyme? If so, what were you told you had? *I was told I had CMV. ALL OTHERS had no clue although I asked 4 doctors about Lyme but because their tests were negative they wouldn't treat me and I did not know better back then.

Josie Graziano

• What types of treatments have you tired? * I have done three years of different antibiotics plus lots of natural remedies. I've done a lot of different remedies.

Josie Graziano

• How has this disease affected you and the ones who love you? *This disease has devastated my family as my husband and children also have it. We don't go anywhere because I'm so disabled and we are financially struggling as well. The joy seems to have been sucked out of our lives.

Josie Graziano

• What is your plan for treatment from now on if any? *I don't know where to go from here because I have been to all doctors in and out of this area and have been on most treatments.

• Do you have any other coinfections or diseases? *I also have babesia, bartonnella and mold and yeast issues.

Kelly Cannings

Kelly Cannings

• When did you first experience symptoms? *I woke up on June 4, 2007 feeling like I had the flu.

• Do you remember getting a tick bite? *To this day I don't remember getting bitten by a tick and never had any warning sign.

Kelly Cannings

• What were/are your symptoms? *I have had nausea 24/7, joint pain, muscle weakness, dizziness, hair loss, weight gain, major fatigue, head and ear pressure, headaches, numbness, eyesight issues, hormonal deficiencies, insomnia, and the inability to exercise.

Kelly Cannings

• How many doctors have you seen? *Over 30 doctors.

• Were you diagnosed incorrectly before you got your correct diagnosis of Lyme? If so, what were you told you had? *I was told I had chronic fatigue, fibromyalgia, addisons disease, hashimotos, depression, anxiety, TMJ, intestinal motility disorder...at least 8+

Kelly Cannings• What types of treatments have you tired?

* I have tired way too many to count!!

• How has this disease affected you and the ones who love you? *Thankfully this disease has caused my husband and I to get even closer! My parents never ceased to amaze me in their support. But, it was traumatic for my girls as they always wondered if one day they would wake up and Mommy wouldn't be there. It really affected other relationships with friends and family. Many questioned what was wrong with me. I naturally withdrew as I was just too sick. Throughout this process, I have come to realize when things hit bottom, who is there to support me!! It was eye opening, but those still there were my dear friends and family! I definitely saw true colors - good and bad!

Kelly Cannings

• What is your treatment plan for now on if any? *To keep living and pray that the improvements I have seen keep improving! To be very careful not to expose myself to something that could wreak havoc in my body and to continue to educate myself and others on this disease.

Kelly Cannings

• Do you have any other coinfections or diseases? *Unfortunately, due to the damage Lyme did in my body I now have: Hashimotos, Addison's Disease, hormonal issues, food intolerances, - I never had any of these before Lyme

Kelly Cannings

• This is Kelly’s husband and their five girls.

Kristy Groover

Kristy Groover

• When did you first start experiencing symptoms? *Almost 5 years ago (2009). Due to stress. Dr. Sponaugle seems to think I've had it since a kid though.

• Did you know you had a tick bite? *No, not at all.

Kristy Groover

• What were/are your symptoms? *I have had insomnia, weakness in legs, numbness on left side of my face, lethargic/spacey feeling, dizzy, off balance feeling, memory issues, crushing headaches that come into my teeth, tremors, constantly feeling like I'm getting "sick", nausea, air hunger, can't read and soak it things in, ears feel full like they need to pop, anxiety, horrible fatigue in the early afternoon, TMJ. All these things come and go (cognitive issues always lingers though)

Kristy Groover

Kristy Groover

• How many doctors have you seen? *About 25 in the last five years.

• Were you misdiagnosed before you received your correct diagnosis of Lyme? If so, what were you told you had? *low blood pressure need salt pills, Meniere's Disease, MS, CFS, EBV, depressed, NOTHING is wrong, equilibrium is off, bronchitis, neuropathy, TMJ, post concussion syndrome.

Kristy Groover• How has this disease affected you and the ones who love you?

*Me- I mourn my old life. I used to work out 5x's per week, I used to be on the PTA and volunteer in my son's school every Friday, I used to be able to drive an hour away BY MYSELF without needing someone to now drive me that distance, I am depressed at times because I feel hopeless, I feel angry because doctor's don't understand/believe this disease and can't fix me, I feel horrible guilt that I'm not a good enough mom because I don't have the energy to play with my son a lot, I feel like a boring/bad wife because I'm not fun like I used to be and my husband has to pick up a lot of the brunt, I have such anxiety now over the simplest things, I am so worried that I gave my son Lyme Disease and so I'm constantly watching him like a hawk thinking every little thing he does is because of him having Lyme...... My loved one's- They feel completely helpless.

Kristy Groover

Kristy Groover

• What is your treatment plan from here if any? *Unfortunately, the treatment really screwed me up. My body couldn't possibly handle anymore kills so I don't know if a LLMD would be beneficial for me. I see a naturopath and hormone specialist. Overall, people are shrugging their shoulders.

Kristy Groover

• Do you have any other coinfections or diseases? *bartonella, mycoplasma, PR, I'm sure babesia but it's not seen on the fry, candida issues.

Sydney Rae Ebner

Sydney Rae Ebner

• When did you first become sick? *July/August 2012 (When I moved into an apt which we think had tons of Mold) {But I also had some minor pain issues and a couple other minor issues since giving Birth in 2009, but never thought anything of it: It is believed to have stayed dormant my entire life till the stress of pregnancy on my body}

Sydney Rae Ebner

• Did you know you had a tick bite? *I had lots when I was a child (but no rashes) (country girl).

• What were/are your symptoms? *Extreme 24/7 pain all over (ONLY symptom still), 24/7 nausea, insomnia, weakness (ending up in wheelchair for a month), numbness on face, extremely tired, dizzy (room spinning), brain fog/memory issues, more migraines, chills, low grade fever, air hunger, WAY worse anxiety, blurriness of the eyes, All these things come and go (cognitive issues always lingers though).

Sydney Rae Ebner

• How many doctors have you seen? *6 Dr.'s

• How many different “diagnosis” did you get before you got your correct diagnosis of Lyme? *I had a friend with Lyme and all my symptoms were just like hers so I went to an LLMD RIGHT AWAY! So 1 diagnosis, thankfully!

Sydney Rae Ebner

• How many different types of treatment have you done? *Started on many different natural treatments which never did anything. Then 1 abx treatment that I did not like, now on my last hardcore IV treatment (which my body needs & is working) Axithromycin 1x & Ceftin 2x a day, along with many Zhang Chinese Herbs & IV Glut/Phos 3x a week. Did a month of Rifampin/Flagyl and now all symptoms are gone except pain.

Sydney Rae Ebner• How has this disease affected you and your loved ones?

*For me it really affected me mentally besides all the physical symptoms. I had always been severely depressed (almost suicidal at points) Always having such guilt for not always being there for my son, and guilt for my parents spending all this money and always taking care of me. For my parents - they are the strongest people I know, they felt lots of stress, especially because they had to take care of me when I was in my worst and my son on top of that when I needed help with him. Its a stressful job as a caregiver. All the medical bills would cause fights between my parents but they would quickly get over it. My son- Just hoping he does not have this awful disease (but how he has only been sick a handful of times for his entire 5 years makes me hopeful :) Enjoy the present! This has definitely made me enjoy the little things and be thankful for so many things I used to take for granted!

Sydney Rae Ebner

• What is your plan from here? *Since all my symptoms except pain are all gone for so long now, Continue my IV treatment but am down to just IV Ceftin 1x a day; 4 days on/3 days off & Methylated B12 Shots every day. UNTIL I am symptom free for at least 2 months straight :) Also need to find a plan to get ALL the different WBC counts up to normal and CD57 way up (possibly Stem Cell Therapy which I have been talking to a doc for 6 months now about for all my pain and to up all my numbers).

Sydney Rae Ebner

• What all do you have in addition to Lyme? *I had major Candida, but that has been under control for quite a long time now. Bartonella, Mycoplasma, RMSF

Zoanna Barley

Zoanna Barley

• When did you first become sick? *1994. I was nine years old.

• Did you know you had a tick bite? *I don't remember seeing a tick but I've been bitten by ticks my whole life.

Zoanna Barley

• What were/are your symptoms? *Joint pain, back pain, headaches, migraines, extremely fast heart rate.

• How many doctors have you seen? *Over the years I've seen several DOZEN different doctors.

Zoanna Barley

• How many different diagnoses did you get before you got your correct diagnosis of Lyme? *I was diagnosed with over ten different things before I was diagnosed in 2007.

• How many different types of treatment have you done? *Probably 9-12 different treatments.

Zoanna Barley

• How had this disease affected you and your loved ones? *Considering that both my parents have Lyme also, its taken over our lives. We are almost entirely about finding an answer.

• What is your plan from here? *Having just seen an environmental doctor I'm going to start going gluten free and scent free and try to live healthier.

Zoanna Barley

• What do you have in addition to Lyme? *I have CVID, Hoshimoto's, Babesiosis, Bartonella.

Ann Clark

Ann Clark

• When did you first become sick? *I first became sick when my 2nd daughter was 5 months old.

• Did you know you had a tick bite? *No, I got several when I was little and had a few symptoms growing up but it was dormant for so long and took long to have the bacteria build up to where it really affected me. Also, my body went through 2 pregnancies and nursing and that's when it really started.

Ann Clark

• What were/are your symptoms? *My symptoms were: feeling like I was preggo, forgetfulness, unable to focus, walked like I was 80 years old, unable to get out of bed for months, joint pain, back issues, knee pain, headaches, unable to use my hands, lost a lot of weight, brain issues, hard time breathing, could not focus, and more I can't remember now!

Ann Clark

• How many doctors have you seen? * I saw almost 20 Doctors before I finally got diagnosed.

• How many different diagnoses did you get before you got your correct diagnosis of Lyme? *I was diagnosed with several (don't even remember). Depression, ms, lupus, chronic fatigue syndrome, fibromyalgia

Ann Clark

Ann Clark

• How many different types of treatment have you done? * I went to progressive medical center and did all natural treatments - oxidative therapy, sauna, bio-energetic stuff, supplements, gluten free/dairy free diet.

Ann Clark

• How had this disease affected you and your loved ones? * It affected us in that my husband missed a lot of work , my mother came to live with us to take care of me and our daughters, I had to have someone drive me daily to progressive for my treatments. I was in a wheel chair/walker for months, couldn't drive, my older daughter became very anxious about me and she had separation anxiety! We had a strong support system though and The Lord brought us through it and still is!

Ann Clark

Ann Clark

• What all do you have in addition to Lyme? *Lyme, bartonella, babesis, Rocky Mountain spotted fever, and a few more I can't remember right now.

Ann Clark

Lana Fisher

Lana Fisher

• When did you first become sick? *Since 1998 I had conjunctivitis of unknown origin. I began seeing doctors because I had early onset of arthritis.

• Did you know you had a tick bite? *Looking back, the week after I saw my first eye doc about problems, I had blood of my first deer killed thrown in my face (tradition). Also had a huge red spot on jaw that I burned with aspirin daily ( didn't know anything about Lyme).

Lana Fisher

• What were/are your symptoms? *Last 15 years been treated as fibromyalgia and arthritis. By 2011 had to replace knee. Severe RLS also.

• How many doctors have you seen? *Saw over 15 docs, one of each kind, cardiologist , rheumatoligist etc.

Lana Fisher

• How many different diagnoses did you get before you got your correct diagnosis of Lyme? *Enlodanlo syndrome, fibro, osteoarthritis, chari malformation, autonomic dysfunction, worsening of heart valves leaking, tenacin 10 deficit, most recent, caps syndrome, I'm sure there's more, but my memory is poor.

Lana Fisher

Lana Fisher

• How many different types of treatment have you done? *Unable to tolerate treatment untill a few months before Sponaugle. Doxy was too painful, the biaxin made me have belles palsy and severe pain. After only a few months of oral antibiotics, went to Sponaugle.

Lana Fisher

• How had this disease affected you and your loved ones? *I was told, " you're no fun" couldn't party anymore and didn't feel like socializing. Everyone thought I was stressed. One friend thought I had cancer, because I could not tolerate food. Lived off of medical powder food. Keep praying, having a positive attitude on both good and bad days so that God recognizes I trust him no matter what. That my cross, will benefit my family in some way.

Lana Fisher

• What is your plan from here? *I plan to take a break from killing, no rife, no herbal Abx, no monolaurin. Want to see what symptoms I would have if I quit killing. I have very high chol. Even though I mainly drink a medical powder. B/p usually high, recently dropping, heart valve problems, muscle weakness of every muscle and and sphincter ( Lol) I will continue trying nothing that has helped others after this temporary break. I know my day of healing is coming. I truly believe, your thoughts become reality, I am just on a journey of uncertainty.

Lana Fisher

Eric Thomas

Eric Thomas

• When did you first become sick? *Not really sure. Been having pain issues ever since I was a young teenager. It has just got worse over the years. Especially the last 16 years or so.

• Did you know you had a tick bite? *I have had several over lifetime. But had many, many, many Lyme tests done but only one came back positive.

Eric Thomas

• What were/are your symptoms? * Memory problems, all muscles hurt and are sore 24/7, sleep apnea, fatigue, pain through out body. More or less the same symptoms for the last 16 years.

• How many doctors have you seen? *Between 3 states and one very reputable clinic I have seen over 20 doctors / specialists. Not to mention I have had over 200 vials of blood drawn, countless x-rays, mri, and many other tests. Don't remember them all.  

Eric Thomas

• How many different “diagnosis” did you get before you got your correct diagnosis of Lyme? *Roughly 5. The usual ones chronic fatigue, fibromyalgia, nerves pinched by discs in back, chronic pain syndrome. All of his from what little they listened to me tell them that was going on.  

• How many different types of treatment have you done? *Around 10 or so.

Eric Thomas• How has this disease affected you and your loved ones?

* It has caused many issues over the years. I used to work over 40 hours a week and play sports 3 to 4 nights a week. As time went on and the pain became worse that all had to stop.  It has kept me from doing things with my wife (Karen) over the last 19 years. I have been unable to work for 3 years now. I have a hard time doing anything physical related. I have issues with having energy and ambition to almost anything anymore. It kills me because I have a wife and daughter that I can not support and do things with that a normal family should be doing.  It messes with you every day of your life. Psychological issues start to develop over time because of the pain and not having any answers and any way to feel better. I thankfully have a wife and daughter who love me. They are the only reasons that I have not ended up an addict of drugs or alcohol or worse. It unfortunately effects every moment of every day of every aspect.  Even something as simple as sitting on the couch with my two girls and trying to relax is hard because I have a hard time being comfortable and in pain.  It hurts my wife to see me like this.  She is always upset and stressed out trying to find ways to help me feel better.  It effects anyone who loves you.  Especially those ones closest to you.

Eric Thomas

• What is your plan from here? *The plan from here is to try and keep my head up and hopefully someday find something that can help me feel better. Also to love my wife and daughter as much as I can. Just do my best that I am capable of every day I wake up.

• What all do you have in addition to Lyme? *I also have genetic issues with mold. I believe there may be some other things but no one has been able to show any proof of anything besides the mold and Lyme. And 99% of the doctors I have and are dealing with do not believe in either the Lyme or mold diagnosis.  

Eric Thomas

Stephanie Barfield

Stephanie Barfield

• When did you first become sick? * I starting having nerve pain in 2006 about six weeks after our first son was born. However, now looking back we think I contracted Lyme just before I got pregnant and that was what caused me to have a difficult pregnancy. There were several complications that we can now link to the Lyme. The nerve pain marker is October of 2006 and that was when we started the quest for answers.

• Did you know you had a tick bite? *No, we think it was in my hair.

Stephanie Barfield• What were/are your symptoms?

*My symptoms were: Memory loss, confusion, lack of word retrieval, inability to focus, inability to write (it would take me over half an hour to write a 30 word thank you card), muscle weakness, nausea, vomiting, no appetite, zero strength, sever nerve pain, insomnia, fatigue, leg pain that caused me to go from walking to using a walker to a wheelchair, depression, food allergies, swelling, skin rash, “electric” feeling, uncontrollable tremors, vision issues (sometimes I would loose color other times I would loose my vision all together for several seconds), unable to drive without getting headaches, migraines, smell sensitivity, kidney infections, hair loss, and more. *My symptoms now are: Environmental sensitivity, fatigue, head pressure, nausea on a much less sever scale, and tremors on a less sever scale, minimal nerve pain, and weight gain. Making my way towards zero symptoms!

Stephanie Barfield

• How many doctors have you seen? *37

• How many different “diagnosis” did you get before you got your correct diagnosis of Lyme? *Not sure of an exact number but some of the labels were gallbladder issues, depression, “NOTHING IS WRONG,” nerve damage, shingles, endometriosis, hormone imbalance, fibromyalgia, chronic pain syndrome, Addison’s disease, and more.

Stephanie Barfield

• How many different types of treatment have you done? * I had my gallbladder removed, nerves blocked and burned, more medications than I can count, counseling, rife, natural remedies, and antibiotics.

Stephanie Barfield• How has this disease affected you and your loved ones?

*For me, I went from having a busy fun life to a life where every month a new symptom would surface. After over five years and leaving our home state I finally got a diagnosis and started IV medications. We did not know I had genetic mutations that made it impossible for me to detox even one single cell of Lyme or mold so the treatment began to shut me down. I went from having a few days a month when I needed to help to being totally bed ridden unable to even sit up on my own some days. This lasted almost 18 months before I started treatment at a new location in FL. Since doing treatment there and discovering my genetics, I am slowly regain my life back. However, I still struggle to live a “normal” life. I am constantly worried about my boys and other family members having this disease.

• As for the ones I love, they watched me suffer for so long. My husband watched me go from a vivacious 20 year old to a woman who could not sit up on her own some days. He has to do a lot of the house chores and things with the boys when I am not able to do them. My family and friends have supported us so much through out this journey and I am SO thankful for them! We could not have done this alone!

Stephanie Barfield

• What is your plan from here? * I am still doing the supplemental regimen that I left my last clinic on. I will be repeating labs to see if I can start coming off it anything at the end of May. Other than that, my plan is to trust the Lord and pray his will be done in my life. He has guided us through this journey and I have no doubt he will continue to!

• What all do you have in addition to Lyme? *I have a massive amount of FL1953, Trichothecene, Ochratoxin, Babesia, hormone depletion, and genetic mutations.

Stephanie Barfield

Thank you so much everyone for being a part of this awareness. I love each and every one of you. I am so thankful for the Lord placing you in my life. I have learned so much from you guys. We WILL beat this!

Jeremiah 29:11 “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.”

Romans 8:18 “ I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”