Help Janáe Sykes battle Lyme

For the last 2 years I have been struggling with my health. I’ve seen countless doctors who have told me, “you are fine, your blood work is “normal” you are healthy.” When I look as pale as a ghost and have an endless list of symptoms that should be a red flag, but nope “I’m fine”. I even took a few trips to Mayo Clinic last year where a bunch of test were done, resulting in a diagnosis of Myalgic Encephalomyelitis otherwise known as Chronic Fatigue (ME/CFS) and Postural Orthostatic Tachycardia Syndrome (POTS). I was told to go on an anti-inflammatory diet, mediate and all will be well. Two months of following this protocol, I thought, why not move back up to Northern California, have a fresh start, and spend time with one of my best friends. It all sounded good at the beginning, but eventually everything came crashing down. Two months after moving I started to get sick again. I would get up at 4:30 in the morning and go across the bay for work. As soon as I came home I would crash. I was so fatigued and drained constantly, this wasn’t the normal “I’m tired from work” feeling. More symptoms started to rise back up; nausea, vomiting, headaches, stomach pain and feverish feeling. I told myself you have to suck it up and push through “your the one that wanted to move up here remember?” I felt isolated and alone. I did not know what was going on with me and no one understood. I thought maybe am I just depressed or have anxiety. I had no idea. Nothing was helping, nothing was working. All the tips I was told by Mayo, “try Thai Chi, continue the anti inflammatory diet, don’t eat red meat, use essential oils, try mindfulness ” nothing was working! I felt so hopeless, lost, and alone. It wasn’t until my best friend called my mom one day concerned, that my family new something was not right. My mom flew up this June of 2018 to move me back home to San Clemente upon her arrival she was shocked to see the state I was in. I thought I was just super weak and that is why my leg was shaking but it turns out I have tremors in my legs. Moving back home was nice. Knowing that my family is behind me and that they to know something is not right. We began calling all different kinds of doctors that we knew were knowledgeable in ME/CFS, since that is what I had been diagnosed with from Mayo Clinic. A few weeks after being home and my mom trying to get as much information as she could, I began to get a tremor on the left side of my face and was admitted to Saddleback Hospital. I was there for a week, all kinds of tests were done: MRIs, heart echo, eeg, lumbar puncture, and countless blood tests, but “everything was normal”. I began to get more and more frustrated. After I was released I was seeing a doctor in El Segundo, who seemed to finally give myself and family some relief, they had a diagnosis. I was told that I have Lyme Disease. I can not describe the relief I felt, knowing that I am not crazy and that there is something going on. I began doing iv ozone therapy, different iv immune therapies, and iv antibiotics. Eventually other oral medicines were added on along with having to give myself peptide shots everyday. I was going twice week sometimes three times making that trip up there to sit in a chair all day hooked up to an iv. I was not getting better. My doctor suggested that we start stem cell therapy right away. This was concerning for my family since we had just found out there are seven different coinffections of Lyme. We thought why would the doctor push this so much when we don’t know yet what coinfection of Lyme I have? Each coinfection is different and affects everyone differently. That being said we decided to seek care elsewhere. My new doctor has been very helpful and is more knowledgeable about Lyme. Today I am struggling just as much as when I first moved home. 90% of my day is spent in bed. I still continue to have tremors in both of my legs and have Gillian Barre on top of my Lyme. I am nauseous all the time, run a low fever constantly, have a headache, fatigue, bone pain, fire and needle pain all over my skin, sensitivity to light and sound, and that’s just some of the symptoms I experience all day everyday. This has been the most challenging season I have been faced with. But I choose to look to God knowing he is here and has a plan. It has not been easy. My current doctor has been working with a Lyme clinic in Mexico that has made great progress with other Lymes patients. I am expected to go to the clinic in a few weeks to seek treatment. The treatment is an iv laser therapy along with other iv treatments that are suppose to help detox my body so that it can except the medicine and treatment so that I can heal and eventually be Lyme free. The treatment is a total of 5 sessions. This has been a huge burden on my family and myslef financially and has put me in debt. I trust God and his plan for my life I know something good is going to come out of this. Thank you for reading my story. 33442584_1538530301126238_r.jpeg
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Organizer

Janae SueEllen Sykes 
Organizer
San Clemente, CA
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