Help Gwyn Beat Lyme & Co-Infections
My name is Gwyn Fowler and I am battling Lyme Disease, multiple co-infections and the complications of Lyme being untreated for years. My doctors think I have had Lyme since I was a little kid. I grew up with reoccurring sinus infections, bronchitis, frequent sore throats and low-grade fevers. I have had 30 joint injuries that had noticeable swelling, bruising, tenderness, yet nothing would show up on the x-rays. I was always more fatigued than my brother. I would sleep a lot more than him and still would not have much energy. My parents were concerned with how much I slept, so I was tested for Lyme Disease multiple times. In 2001, I was tested for Lyme and came back "negative." (At the time, I was also tested for hypothyroidism, under active thyroid. My results came back positive for hypothyroidism, yet my doctor did not treat my under active thyroid.!!) My pediatrician told my parents that I was a child who needed more sleep than other children needed. In 2005, I was retested for Lyme and my results came back equivocal. The Western Blot should be done if Lyme test comes back equivocal or positive. The blood people did not do a Western Blot for me!
I continued growing up thinking nothing is wrong with me. I am healthy. I just have a weak immune system (low white blood cell count) and I am injury prone. I got straight A's throughout elementary-high school. In 7th grade, I started playing field hockey and continued throughout high school. I also played on a club travel team. Early in my senior indoor field hockey season (Dec 2010), I was tripped in a game. I sprained a ligament, bruised a bone and caused serious nerve damage. In Feb 2011, I was diagnosed with Reflex Sympathetic Dystrophy (RSD) a rare and painful condition. RSD is also known as Complex Regional Pain Syndrome (CRPS). RSD is caused by damaged to the nerves in the nervous system causing chronic pain. The Mayo Clinic says, "Complex regional pain syndrome is an uncommon form of chronic pain that usually affects an arm or leg. Complex regional pain syndrome typically develops after an injury, surgery, stroke or heart attack, but the pain is out of proportion to the severity of the initial injury." http://www.mayoclinic.com/health/complex-regional-pain-syndrome/DS00265 I experience temperature changes, touch sensitivity, skin discoloration, joint stiffness, swelling that does not go away, burning pain (feels like you are on fire), stabbing sensations, numbness and pins and needles.
It was not until August 2011, I finally tested positive for Lyme Disease! My results were "off the charts" according to my doctor. I was given the normal 4-week course of Doxycycline. Near the end of the 2nd week of Doxy, I ended up in the hospital due to severe stomach pain and I had a migraine that would not go away (4th day of having migraine). I was unable to eat or sleep due to the pain and never ending migraine. I had a multitude of tests to try to figure out what was going on. I had a GI scope and was diagnosed with Gastritis, severe inflammation of the stomach. The doctor thinks I developed Gastritis because of using NSAID pain medications for 6 months for my severe ankle injury that occurred in December 2010. After finishing my 4 week course of antibiotics, I did not feel any better. At this time, I made the decision that I could not go away to college with my health deteriorating.
Ever since my diagnosis in August 2011, I have been seeing multiple doctors trying to be treated so I get my health back! Multiple doctors tried to say I had Multiple Sclerosis (MS), never ending Mononucleosis, Chronic Fatigue Syndrome (CFS), and Fibromyalgia. After multitude of tests, the doctors just gave up on me.... saying "I don't know what is wrong with you, but it is not Lyme." I did not accept the doctors' comment as a solution to my health problems.
Several friends and familiy member helped me to search online for a Lyme Disease forum/support group. A member of the online support group has helped me immensely with finding a Lyme Literate Physcian (LLMD). He said Lyme Disease patients have to see a Lyme Literate Physician in order to get their health back! The good LLMD's are trained by International Lyme and Associated Diseases Society (ILADS). http://ilads.org/lyme_disease/about_lyme.html
I have learned many things in my ongoing journey battling Lyme Disease. I have learned that all testing for Lyme Disease is inaccurate! Those times I tested negative and equivocal I could have been "positive" but it did not show up. I was untreated for years, while the Lyme spirochetes took advantage and "moved in" started attacking my body especially my joints, brain and immune system. One goes through many doctors until they find a LLMD taught by ILADS. I had no idea Lyme doctors existed until I joined a support group.
The biggest issue is financial hardship. I am in bed most of the time and unable to function let alone get a job. Simple things like showering take me twice as long. I cannot walk very far anymore due to the joint pain, RSD and spine issues. Some days are so bad I am stuck in bed unable to move due to the excruciating pain. So far, treatment has been unsuccessful. I am falling further down the rabbit hole. One of the more recent developments is the racing resting heart rate of 158 bpm, sinus tachycardia. Mayo Clinic says, "Tachycardia is a faster than normal heart rate. A healthy adult heart normally beats 60 to 100 times a minute when a person is at rest. If you have tachycardia, the rate in the upper chambers or lower chambers of the heart, or both, are increased significantly. Tachycardia can seriously disrupt normal heart function, increase the risk of stroke, or cause sudden cardiac arrest or death." http://www.mayoclinic.com/health/tachycardia/DS00929
I need financial support to help me beat Lyme Disease and co-infections. The average cost for medications alone per month can be easily $400-$1,000. Many medications insurance companies will not cover, so Lyme patients have to pay out of pocket! Add doctor visits, blood work, supplements, MRIs, hospital bills and the cost is jaw dropping. I am asking for help! Any donation amount will help. I am doing my best to stay positive and keep my eyes set on going to college when my health returns. All the money will go towards my medical bills for my Lyme Disease treatment. Thank you for your donation. I greatly appreciate the support.
About Lyme: http://www.ilads.org/lyme_disease/about_lyme.html
Treatment Guidelines (The guidelines for Lyme Disease treatment, followed by ILADS LLMDs): http://www.ilads.org/lyme_disease/treatment_guidelines.html
Tips on Lyme: http://www.ilads.org/lyme_disease/lyme_tips.html
Lyme brochures you can print and share with others: http://www.ilads.org/lyme_disease/lyme_brochures.html
LymeDisease.org: Formerly known as CALDA:
Tick Borne Disease :
"Lyme disease is often mistaken for other illnesses since the symptoms often mirror other medical problems, such as multiple sclerosis, arthritis, chronic fatigue syndrome, lupus or Alzheimer's disease." http://tbdalliance.org/diagnosing-tbds
How to remove a tick: http://tbdalliance.org/get-informed/tickremoval
Tests for Lyme Disease: http://tbdalliance.org/diagnosing-tbds/tests
Lyme Symptoms: http://tbdalliance.org/diagnosing-tbds/symptoms
Here is a link to find a Lyme Literate Doctor (LLMD). These doctors know how to treat Lyme Disease and the co-infections that many Lyme people also get from the tick:
Lyme Disease Association:
"Protect yourself: Things we wish we would have known about Lyme Disease": (Spanish and English) http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=82:80
Lyme Disease and Pets: http://www.lymediseaseassociation.org/index.php?option=com_content&view=category&layout=blog&id=28&Itemid=1
I have been working on creating an Etsy shop to sell my handmade items to make money to pay for my ongoing medical bills. My Shop Name is MadebyGwyneth so feel free to stop by and take a look around. I only have a few items listed right now, but I am working on getting up some more Made to Order Items.
My Treatment has been about the same. I am taking three antibiotics, probiotics, supplements for supporting the immune system. I did 60 days of a special nasal spray to try to kill the two infections going on in my sinuses. I just had the sinus culture test redone, and am awaiting my results. I am hoping the infections are gone because I really do not want to spray my nose with (cold since it has to be in the fridge) nose spray! For those 60 days I had to have puff tissues everywhere I went since that is one of the intended side effects of the therapy (running nose 24/7).
Symptoms that have improved / gone away since finishing up the first round of special nose spray include:
No more 24/7 congestion
No more killer headaches multiple times a day
Less sinus pressure which has alleviated the tightness I felt in my face.
Other symptoms that have not been around much:
Heel Pain (unless I overdo my limited walking distance)
Pain in my Spine (Cervical, Thoracic, Lumbar) has lessened thanks to Chiropractic adjustments. I used to go 3 times a week but am down to just once a week which is good because it saves money and time!
I am still looking for donations to cover my LLMD appointments, medications and supplements not covered by my insurance, tests not covered by my insurance (such as the sinus tests) and lab work I have to get routinely. I want to say Thank You to all of those who have already donated. I am very grateful for your support.
Well good news is my doctor's know for sure that my SIBO is gone! YAY! No more 24/7 nausea and GI cramping!! I don't have to take anti nausea meds around the clock anymore which is good news.
I was having a hard time on Biaxin (ringing in my ears) so my doctor has switched me to Azithromycin instead which is in the same family. So far I have not experienced the constant ringing of my ears like when I was on Biaxin.
Currently my LLMD has me taking the following antibiotics: Bactrim DS, Cefdinir and Azithromycin to attack Bartonella and Lyme. I am starting a new natural supplement (Immuplex) to boost my immune system even more. My blood work came back showing I have very low white blood cells which is not good.... it means I can literally catch almost any cold / virus going around. Due to the low WBC count I have to be extra careful on staying away from sick people, using hand sanitizer when in public and washing my hands a lot! I am still awaiting results of the rest of the extensive labs my LLMD ordered to check on my thyroid, the genes that could cause someone to be more likely to develop blood clots and a whole slew of other tests. I will keep you posted!
Thank you to all my supporters! I would not be able to get treatment without your contributions! Sadly many insurances including mine do not cover LLMD's. I am grateful for what I can get covered by my insurance even though it is not a lot.
Sorry for lack of posting. I had not intended to not post my monthly updates! Last few months have been really busy. In June I had minor operation to take out my Hickman catheter out of my chest due to developing a blood clot in one of my right cephalic veins in my right arm. I have mostly recoverd from the removal of my line.... I say mostly because I do have chest pain where my line use to be. I suspect due to the traumatic way my line was removed may have caused damage to nerves / more scar tissues than normal. I can say though I am thoroughly enjoying real showers!!! I went 1 year 7 months and 9 days without a real head to toe shower!!
June and July :
I have been taking blood thinners for my blood clot. I also restarted oral antibiotics since I'm no longer on IV antibiotics. Taking Cefdinir, Bactrim DS and Biaxin (generic). I had stopped Biaxin for a bit due to developing tinnitus in my ears. Unfortunately the alternate antibiotic (clindaymycin) I couldn't tolerate at all due to severe GI symptoms! So after a short break for extra probiotics I restarted Biaxin (generic).
Been busy taking care of the guineas we have and trying to spend more time outdoors. I also signed up for a class early August called Introduction to Forensic Science on Coursera! The course is very time consuming and difficult!
Busy with class work and visiting a loved one in hospital. The field hockey season started early Septrmber so my Dad and I have started going to games at Princeton! Go Tigers!! #1 Fan. Still taking oral antibiotics and tolerating them ok.
Thank you for your continued support and positive thoughts! I greatly appreciate it! :-)
We are having great success with the Salt C+ protocol. Your migraine was probably a herx reaction. When you kill the invaders you will get worse before you get better, the longer you have been sick the longer and harder you will Herx. I also encourage you to learn about bio films.
Hello sister lymie, I also am fighting this battle. I am going to tell you something a dr just told me use cats Claw it has been shown to kill Lyme and co infections better than any antibiotic. I also have like you a crazy heart rate. I'm not seeing a holistic Lyme dr. They are much better at dealing with this and as you know true Lyme drs are NOT listed in the phone books. Keep fighting my dear. It's hard and a long road but we must keep fighting! I have 2 kids and also can't work because of Lyme. It's a nasty ugly disease!
Dearest Gwyn, your story touches my heart and I always believe and have hope that you and I and the rest of us that suffer this retched disease will heal. Stay focused and strong in heart and through your journey stay connected to your inner soul. My very best wishes to you . I hope you reach your goal and I wish I were able to help you... when I am able , I will xoxox with love, Luba