Paul: First we both want to thank you for taking the time to read our story. I am trying to save my wife’s life. I can't stand to see her suffering so much-in so much pain every day & stuck at home w/no life. She has spent most of her life trying to help others through work & volunteering (she has been a mentor for high school students, helped veterans, been a counselor in a group home for teens, volunteered to help abused women & children, potential suicide victims & rape victims, helped people with brain injuries, took a job to help pregnant women with substance abuse problems. She also helped start the Bay County Compassionate Friends Chapter here in Panama city and was co-leader with one of the other founders. The Compassionate Friends is a worldwide non-profit organization that helps grieving families that have experienced a loss of a child, grandchild, or sibling. She was so broken-hearted that she had to resign from that position due to her illness, which at the time she didn't know that it was Chronic LD...Being so sick and dealing with all the stress (from many factors) and all the time she put into writing the chapter newletter and other leadership duties were very hard to keep up with while she worked a full-time job. Her degree is in psychology b/c she has always wanted to help others, and Sheila has even given food to some of the homeless people close to where we live (even though we were barely able to pay our bills even when she was working). She has such a loving and giving nature, & I truly believe she deserves some help. The world is a better place with her in it. We are reaching out to all of you because we firmly believe God will provide...
We used to be able to go out & do fun things, such as going for walks, going 2 State Parks, picnicking, & so many other things. Now she can barely walk w/o horrible pain. She is trying to use her extra time to catch up with old friends & family on FB. Besides God & taking pills all day long & feeling horrible, that is all she has right now .Plus, she has joined many Lyme Disease (LD) CAEBV, & other grps. Many have suggested we use an online fundraising site such as this b/c insurance doesn't pay for her doctor's visits or trts (treatments), which cost over $1000 a mon. I work 2 jobs just to pay the bills. I am only 4 yrs. cancer free, & this is really taking a toll on me. We used up every bit of savings & our credit card is maxed out. She was 1st diagnosed Fibromyalgia, then Chronic Fatigue Syndrome, & then CAEBV, which is a reactivation of the Epstein-Barr Virus (95% of the population has dormant EBV). It is usually only reactivated when the immune system is seriously compromised, as in the case of LD. Finally, she was diagnosed with Chronic Late-Stage LD, co-infections (Bartonella & Babesia), anemia, & Mast Cell Activation Syndrome. Many with LD also have co-infections & CAEBV. Her doctor also diagnosed her with MSIDS (Multiple Systemic Infectious Disease Syndrome), which means multiple bodily systems are affected. So far, LD has affected her joints, muscles, immune system, brain, & eyes. These are just what we know of so far. It is very complicated, & we are going to post updates, pictures, & videos that explain much of this. Many with Late-Stage Lyme go into remission with trt, but it often takes yrs & w/o treatment, it is fatal. The great news is that with trt Sheila could go into complete remission indefinitely. Please help save Sheila before it is too late.
Please read Sheila's story and watch her video below my video...
Sheila: First, I want to say thank you again for reading this. Anyone who knows my husband, knows he is the most loving giving individual ever! He would die for me & may end up that way if I continue to decline. If you don’t know me or don’t want to help me, please consider helping for my husband. He can’t keep working all these hours & doing everything else. I did not quit my job, I was let go due to too many doctor’s appts & a few sick days, & they knew I was sick when they hired me. I loved my job helping people with brain injuries & loved all the members. It truly broke my heart when they let me go. It was when I was diagnosed with Fibromyalgia, & people would say all the time that so & so could run marathons & do all kinds of things despite the Fibromyalgia. So, I tried my hardest to hide all the pain I was in. Many days every step I took hurt so bad I wanted to cry, along with my back & other joints. I had other symptoms, but those were the worst at the time.
Anyway, Mayo Clinic had a 2 day program that was supposed to basically put Fibro patients into remission (they said it was “practically” a cure). I requested time off to go to Mayo (about 5-6 hrs away from where we live) to get this trt. The trip made me so extremely sick that I couldn’t even finish it. I went back to work as originally planned, & they put me in a separate room for 3 wks to make up classes & activities for the members & then fired me. I had to get a job right away to help pay the bills. So, I took a job as a courier. In the interview, I told them I had doctor’s appts coming up & asked if it would be a problem. My boss said no problem b/c they cover for each other. Well, they lied about that & lied about how much heavy lifting I would have to do.They did not have enough people to cover for each other, & I had very heavy medical supply boxes & mail bins to deliver nearly every day. Plus, I was working about 50 hrs a wk. I got the flu (at least that’s what I thought it was at the time (something was going around), & with my compromised immune system, it was even worse. So, about a wk before Christmas, I had to take 2 sick days. They told me not to bother coming back. I was too sick to sue any of these people; however, I at least got unemployment this time-which I had to fight for... I also hurt my shoulder & now have limited mobility in that arm b/c no matter how much it hurt to pick up those heavy things, I ignored the pain so as not to miss work or complain & that led to a possibly permanent injury. Then, thanks 2 God,I got a great job working as a case manager in a home for pregnant women with substance abuse problems. By then, I knew I had LD & told them I would try to put off trt until after the 3 mon. probationary period & told them I had doctor’s appts, etc. in the interview. They said that was fine, & it wouldn’t be a problem. Once again, a lie. They let me go after I was sick for 2 days. They didn’t give me a reason for why they were letting me go, but I put my heart & soul into every job I have ever had (no matter what it was), & I was doing a great job. It did not require a lot of physical activities; therefore, it was much easier on my body. I have many letters of recommendation from other jobs, so this was very devastating for me.
Trusting people & working so hard thru all of my physical pain, hiding it, & not complaining about it. Being let go from 3 jobs in a row is truly devastating, especially b/c, despite all, I was doing a great job at all & was up front about appts. etc. At this time, I was doing well enough to make it through the day w/o “crashing” as husband calls it-meaning the brain fog was so bad that I sometimes couldn’t finish sentences, mixed up my words, or couldn’t have a conversation at all. This started happening after I got home from work, thankfully! Since I wasn’t being treated, the LD & other infections were still attacking my body full force. I sacrificed getting trt in order to get & keep this job! All my life, I have worked so hard, raising my daughter on my own, working 2-3 jobs at a time, going to college & working 1-2 jobs at the same time. I have worked & worked & worked... I don’t understand why these things are happening, but every time I get closer to God & in His word things start to go wrong. Many say it is the enemy attacking b/c he hates 2 see anyone get closer to Our Lord…
After Val (my only child) died, I started reading the bible & had bible study every wk for a yr & then was saved 2x. The 2nd time I rededicated my life to the Lord I was baptized again after joining a Baptist Church. My husband & I are still continuing bible studies & have joined a new church recently. I know God has a reason for all of this, but it has seriously taken a toll on me, but I will never ever let the enemy win. I will keep loving God with all my heart & soul & keep trying to help others, if not through work, then other ways… Anyhow, after being let go from my last job, my days were spent researching all of these diseases trying to find the cheapest fasted way to get myself into remission. I am still doing the research, but it was stressing me out so much reading about all the people dying & suffering so much-especially the ones who couldn’t afford trts or who had whole families infected (heartbreaking stories) that I had to find something else to occupy my time. So, I joined many LD groups on FB, & started trying to have some sort of life & human interaction & get caught up with friends & family, since I am alone most days & nights while my husband works. I was working so many hrs before this that I barely had time for FB. Even before we moved here, my husband & I both were working O.T. We moved here b/c his job was not secure (they were laying people off left & right). This led to my husband searching for a job. We decided moving south would be good to get away from the harsh winters b/c even back then my joints hurt. Anyway, all the jobs I had here either had O.T., or I spent hrs after work learning things for the new jobs, or actually working from home for free in some cases because I chose to do it to do the best I could.
LD is an invisible disease where it is very difficult for anyone to think you are sick b/c with a little makeup, I can look fine. Also, since being in trt I can actually clean a little, cook a little, or even go to Walmart for a few things. However, after doing something as simple as putting makeup on or doing the dishes, spikes my fever up, the pain starts to worsen, & I begin to pay for not “resting” my body. I have had a fever now, every single day, for at least a yr. & 2 months. I didn’t check before that… I will go into more detail in my video. I have had joint pain for many yrs., but LD never even crossed my mind…Our insurance doesn’t pay for me to see an LLMD (Lyme Literate Medical Doctor) because of the controversy involving the CDC & the Infectious Disease Doctors vs. ILADS (The International Lyme and Associated Diseases Society) & LD patients. Plus, of course if the insurance company acknowledged Chronic LD then it would cost them way too much money (and that’s a whole other story). ILADS is a worldwide group that has proof that Chronic Lyme disease does exist and causes extreme suffering and death-sometimes even with trt. Over 700 scientific papers have been published by doctors & scientists worldwide showing the facts. There is currently a lawsuit being brought against the CDC. Here are just some of the websites to get more information- https://on-lyme.org/en/sufferers/lyme-stories/item/261-unprecedented-claim-against-the-cdc-over-lyme-tests ,
http://www.ilads.org/ilads_news/2017/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/ , http://www.publichealthalert.org/ignore-bartonella-and-die-trivializing-bartonella-is-like-ignoring-tnt.html#.WheBKYRUgdA.facebook , & http://www.ilads.org/ilads_news/wp-content/uploads/2017/02/CLDList-ILADS.pdf. I will post more websites in the updates…
I know it is very complicated to understand, but I am one of the lucky ones (haha). I actually got a positive test (even by CDC standards-which are worthless b/c they make it almost impossible to get a positive test). So, I have many bad test results to share, along with diagnoses, & the protocols my doctor has had me on since June. I can’t upload word documents but can copy & paste or take pictures of the info. I will also share all the receipts for doctor’s office visits, medications, & supplements. I have been researching these diseases for many months. Please view some of the You Tube videos I am going to share in addition to my personal videos & pictures.
I will provide as much proof as I can in for those who don't know me. People who know me know I would never make something like this up & , in fact for many yrs. while raising my daughter alone, I would never accept help from anyone. I was very stubborn… Finally, I learned we are not here on earth to do everything alone. We are here to love & help one another. That is the way God made us...
Under Our Skin - Best documentary on Lyme Disease
Iron deficiency anemia
Mast Cell Syndrome
One copy of C282Y mutation-making me, at a minimum, a carrier of hereditary hemochromatosis
and possibly POTS
-Little purple dots all over the legs and arms
-Crying burned my face
-Pain lower stomach-over ovaries and bladder
-Joint pain all over
-Sunburn feelings-various places on body-mostly stomach and back
-Burning & pain in upper stomach & heartburn
-Crashing (husband calls it crashing)-can’t think by the time I get home from work or when very tired. I can’t remember words and mix up words, for example: hot day would be dot hay-happens nearly every day
-Sometimes left eye lid droops (and now -January 2017 left eyebrow), also occasionally my left eyelid doesn’t open as fast as the right eyelid
-Bottom of feet started to hurt daily (as of 2016) feels like I am walking on rocks and bottom of feet burn frequently.
-Despite extreme tiredness, I can’t sleep without medication
-Horrible cramps in calves & feet occasionally, especially at night
-Bruise very easily-even on eyelids from very light rubbing
-Eyes sometimes burn & are watery at night
-Fever every day since at least September 2016-probably longer
-Many sinus infections, UTIs, and yeast infections (many courses of antibiotics & sulfa drugs)
-After tooth extraction, ulcers all through mouth (at least 20 that lasted for weeks)
-Neck pain for years
-lower back pain for years
-severe middle back cramping after using back vibrator and after hydro-massage beds
-pain behind the eyes, blurry vision, and many floaters (some people with Lyme Disease go blind)
-coughing up yellow mucous
-sore red throat for last couple of years
-random shooting pains in various areas of body
-no longer able to lift left arm due to shoulder and arm pain
-high blood pressure
-occasionally tip of tongue is numb
-tingling all over
Doctors I have to see on a monthly basis:
LLMD (in Jacksonville)
Dermotologist (skin issues related to my illness)
Gynocologist (yeast infections and urinary tract infections due to antibiotics and LD
Dentist (many problems with teeth due to LD or co-infections)
Dentist who specializes in safe removal of mercury
Primary Physician (every 1-2 months for follow-up testing
Most with co-pays except my LLMD which is paid out of pocket (one of the photos has a fee schedule).
Bad test results
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