Parents of Childen With Lyme-The Landon Story

Myesha, her twin Celeste and Mary Elizabeth.

Our Story

If you notice there is several pictures on top of one another. The first picture is the (which we affectionately call the Picc Room) room we get our supplies and picc dressings changed. The second layer of the picture is my two twin daughters Myesha and Celeste infusing their antibiotics. The third picture is my daughter Mary riding a miniature horse at The Land of Little Horses in Gettysburg, PA. Please do not take the picture it is very special to me. That's right I am a Parent of Children with Lyme. All three of my daughters have Lyme Disease, to be more precise Congenital Lyme Disease. I have Lyme also and my children got Lyme Disease invitro. You can read our story here, below.

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This Families With Medical Issues site belongs to **Parents of Children With Lyme***

Left to right from the back ..my husband, Darren and me (Cyntha)our girls in the front from left to right Mary Elizabeth, Myesha and her twin, Celeste.

I am not sure exactly when I was bitten by a tick. But it has ruined my life and caused much pain for my family and I. My Mom does remember my EM Rash. We figure it was probably around my 14^th year of life. But she said the Bulls Eye Rash started on my right ankle and spread to my knee. I figure I may have gotten this rash on a trip that I took with my family through Utah, Wyoming and barely into Colorado. We did stop in Colorado to camp for a few days. I grew up in Idaho all my life.

I do remember that I was very depressed while in my ninth year of school. I also remember sitting many times in many of my classes and a feeling of numbness running through my legs. I spent many days in the nurse’s office. During the summer I slept many of my days away in bed. I did however start feeling better in my 10^th year of school. Life was not to bad. I did however have pain in my back and neck. But I felt this was just associated to growing pains. I too had many bouts of depression off and on.

I made it through high school and then began to work at the age of nineteen. I also got my drivers license and felt like a new person. But many times I would come down with migraine headaches. I believed at the time this was due to the snapping and pain I had in my Jaw. I did not have my wisdom teeth removed. I have all four of them in and I still have them today. I got my EMT-B license through the state of Idaho and was planning on continuing my education in this area to get my paramedic degree. Which Lyme Disease has also taken from me.

At the age of twenty-one I met my wonderful husband. I was also going through another bout of depression. What a wonderful man he has been. He has done so much for our family and has stuck it through with us. Every day he lets me know how much he loves me. We got engaged on December 22, 1994 and we were married on March 11, 1995. Before we did get married I went for a physical. I believe this is a good thing to do before you are married so you know the state of your health. I had gained quite a bit of weight and my skin was very dry. The doctor felt I had some thyroid problems so he tested me for it and it turned out negative. I started birth control pills a week before we were married. We wanted to wait a couple of years before having children. This did not work well however because I became violent on the pills. It did not matter what pills I took I still had the same results. So we decided it was time to have a family. I still had pain at this point but still believed it was growing pains and continued to ignore it.

My husband left for National Guard camp at the beginning of June. He was gone for two weeks. I was desperately depressed and cried many nights with my sister whose husband was also off with the National Guard. She married my husband’s brother. I became ill while he was gone. I was seeing blood when having a bowel movement. I had a lot of pain in my abdomen. I thought perhaps I had some hemorrhoids or something causing the bleeding. I went to the hospital where they found nothing wrong but a urine infection.

Darren returned a couple days later and everything I felt was going fine. A week later we went on a rafting trip to Jackson, Wyoming. We had loads of fun and spent a couple of nights at a campsite near the rafting lodge. Two weeks after our rafting trip I was working and noticed I itched like crazy on my right leg. I was working as a C.N.A. (Certified Nurses Assistant) at the time. I went to the bathroom to see what was going on. My right leg was covered with a rash. The nurses said it was like nothing they had every seen. In the end, they decided it was just chickenpox, despite the fact I had it when I was three years old. It lasted for about three days. It had spread from my right leg to my left and then some on my back and belly. My arms to were covered and I had very few on my face. I believe I was bitten and infected again.

A week later I became pregnant. The first three months went real well with very little morning sickness. But after the third month I became very ill. On a routine ultrasound they found out we were having twins. We were so thrilled. But then it became very quiet in the room, making us very nervous. They could not tell us if they were boys or girls. We had previously picked out two girls’ names and boys’ names too. I had a feeling beforehand we were going to have twins. I had been growing very rapidly. When the physician came into to take a look it too was quiet. We were then told I had a condition called, Twin to Twin Transfusion Syndrome. The baby on the right was three weeks smaller than the twin on the left. We were told that this condition many times ends in tragedy. We were sent to Utah University Hospital in Salt Lake City, Utah. I had many ultra sounds done and were asked to stay in Salt Lake City during treatments. We immediately dropped our lives in Idaho Falls, Idaho and moved to Salt Lake City, Utah.

We were asked to reduce the pregnancy to one baby. We could not do this. We felt if they died it was meant to be. But we had great faith that they would survive; despite the fact they were given a 10% chance of living. We were also given the option to go to Wisconsin to have surgery done to try and save the babies. But we felt this too was not our answer and we went on faith that they would live. About my 25^th week of pregnancy I was found to have Gestational Diabetes. Towards the end of January, 1996 I was admitted to the hospital with Pre-eclampsia. I was one sick cookie. Oh yes on my 28^th week of pregnancy they discovered that the right twin (which we knew the twins were girls. The right twin was Celeste and the left was Myesha) was stuck in one position and also had Dandy Walker Malformation (a cyst form malformation in the fourth ventricle of the brain). This is a rare disease and usually caused many other problems.

Dad, holding from left to right, Myesha Shacone and Celeste Fay!!

February 14^th, 1996 I became very ill. The doctor felt I could not go on much longer. My blood pressure was holding just fine but I was seeing spots before my eyes and just could hardly eat. I must have looked really awful cause all he did was basically walk in and then from there I was moved fast to the prepping room for a c-section. Celeste was breach and was also still so small that they felt she could not handle the trauma of a natural birth. At 10:59 AM Myesha was born weighing in at 4 lb. 8 oz. (Due date for my twins was March 26^th). She did have some trouble with breathing but a nasal cannula helped her out perfectly (I had received steroid shots to develop their lungs faster). She also was having trouble holding her own body temperature. Celeste was then born at 11:01 AM weighing in at 2 lb. 3 oz. She came screaming and hollering and did not need any oxygen at all. She amazed us all. She was doing better than her twin. She did however two days later have a reflux episode, which caused pneumonia. They had to put her on a high concentration of oxygen. Prior to this she had been on no IV and suddenly she was hooked to several. A week later she was still on high concentration of oxygen. The nurse had also slipped to us that her head circumference was bigger. They had not informed us that this was happening and it has slowly been happening for a week. We were very angry because we had been told that she probably would not need a shunt.

(My twins are Monozygotic but Celeste on the right is smaller due to health problems. Also she has a higher forhead due to her DW and Hydrocephalus. She is also skinnier) This was taken when they were 4 yrs old.

Myesha had gone home with us nine days after she was born. I still did not feel well and every step seemed like a very high load to bare. I worried the nurses often when I would go in because I had back pain and fevers.

On March 10^th 1996 Celeste was transferred to LDS Primary Children’s Hospital in Salt Lake City, Utah. Basically just across the street if even that. On the 19^th of March they inserted her shunt for the Dandy Walker Malformation. Her head still stayed big, but they said that the shunt was working great and the ventricles looked fine. On the 30^th of March we took her home weighing in at 3 lb. 14 oz. We had to bring her back on the first of April because she was constantly throwing up and screaming. They did a head CT and a MRI. They came back telling us that her shunt was working great but that she needed another shunt because she had developed Hydrocephalus. This was done and we took her home three days later. Things seemed to go really well but in her 15^th month of life she had to go back to the hospital because she had a staff infection. She had many revisions done because they couldn’t get it right. I was still struggling with not feeling well myself. She had many delays at this point. She was crawling but was not walking or sitting. After the shunts were replaced and we went home two weeks later she began to sit with no problems.

Myesha was still doing great. Celeste however besides the shunt was having one ear infection after another. She started walking at 22 months of age. We were so proud of her and she acted like most little girls do. She seemed to learn very well. She however was diagnosed with Failure to thrive. At one year old she weighed 10 lb. At two she was 16 lb. We had to stick a tube down her nose every time we needed to feed her. Finally we had G-button put in surgically so we could feed her directly to her stomach through it. She was having physical therapy as well as occupational therapy done to help with her balance and eating. She was having trouble with certain textures in her mouth and swallowing.

Mary Elizabeth

I became pregnant again in February 1997. I developed Gestational Diabetes again. This time I had to take insulin to control it. But this only happened three weeks prior to Mary’s Birth. I also developed Pre-eclampsia again. Mary was due on November 3, 1997 but was born on October 6^th, 1997 weighing in at 7lb. 1 oz. Due to gestational diabetes she was a very big baby. She did fine other than a small heart murmur (which happens to many babies and then goes away) and her sugar being high. We both went home the next day though. When the nurse came out to check on us I still had a high blood pressure and was feeling very ill. Three days after being released from the hospital I returned with 102.2 temperature and great pain in my back and upper neck. They could not figure out what was causing my high fever so they put me on IV Antibiotics. Which soon after that I got well. I had many tests done including spinal tap because of the fact I had an epidural with Mary. I came back negative for meningitis and infection from the epidural. It took them seven tries on the spinal tap before they got it right. I was in so much pain when they brought me to the women’s ward. I spent three days in the hospital. They figured that I must have had a spinal headache and gave me blood patches to try and plug the leak of my spinal fluid. When returning home I felt really well. Other than it still hurt to sit up to breastfeed and I was tired all the time.

Mary Elizabeth at 6 yrs. old

Mary was constantly crying. She could scream for many hours at a time. We tried once to go out on a date and leave Mary with her Grandma (my mom) but it did not work. When we returned four hours later grandma was crying and baby too. Mary had screamed the whole four hours. I was the only one able to calm her down and even at times this was difficult. Her voice always sounded horrible. We dreaded putting her in her car seat because she would scream the whole time. We tried not to go anywhere with her often. All my family members refused to hold her and so did my husband. They just could not handle it. I knew something was wrong but could not figure out what. Doctors figured it was colic. I did not feel like that was so and I kept getting impressions something more serious was going on. She was sleeping with us every night and nursing pretty much all night for comfort. I was desperate, not feeling well and needed to have some kind of break.

Celeste and Myesha were complaining of pains often in their joints and began to complain often about the same problems I was having. I did not know what to do. I continued to have problems. In July my heart began racing; I was having panic attacks. Soon after I also began to have skipping heartbeats and feelings of fluttering. I was put on Paxil and Xanax. I had to get of the Xanax though because I could not be aroused and my oxygen level would fall dramatically. This helped for a time. Then in August 1998 I became very ill while out on a family reunion. On our way home I had a temperature of 102.2 (magic number I guess), I was having extreme back pains and headaches. I stopped at the Blackfoot Hospital in Bingham, Idaho. They felt at first that I had a possible meningitis problem so they did a spinal tap. This turned out negative. They then tested me for mono and believed they had found the problem. They then did another test and found I did not have mononucleosis. I did however come up positive for the Epstein Barr virus. They also found that I had a small urine infection. Because they could not find the cause of my fever they put me on IV antibiotics. I began to feel really well. Three days later I went home, only to be taken by ambulance to the Idaho Falls hospital the very next day with numbness and tingling throughout my whole body. I had CT done of my head and many blood tests. I was having trouble keeping my oxygen level up. On one of the blood tests they got back they said I had a blood clot. Because of my oxygen level they thought perhaps it was in my lungs. I had many tests done to check for this. They couldn’t find anything so they repeated the tests and it showed I did not have a blood clot. I had chest x-rays done. They even did ultra sounds to check my galbladder and other organs. I had an MRI done on my neck and back. I had many tests done while I spent a week in the hospital. They said I had a small urine infection, which I thought had been taken care of in Blackfoot. I had Lyme disease tests done and many other conditions checked; some of which were rare. The doctor was desperately trying to figure out what was going on. They could not find anything so after a week they sent me home. I was having many problems still. I than came upon Chronic Fatigue Syndrome and thought perhaps that is what I had (I still had not even heard about Lyme Disease even though the doctor had tested for it, it had not occurred to me).

A week after getting out of the hospital I went to an internal medicine doctor. He found that I had Hashimoto’s Thyroiditist. I was put on medication for that and was changed from Paxil to Celexa. I was also put on Synthroid to help with my thyroid problem. They had also diagnosed me with Chronic Fatigue Syndrome. I continued to have problems.

January 19^th, 1999 I had three grand mal seizures during the early morning hours. I had been sleeping and woke my husband up due to the seizures. I was again taken to the hospital by ambulance. I was sent home with no CAT scan or MRI because I had had one done in August 1998 and it looked fine. Four days later I had an EEG done and it looked just fine. I continued to have some small episodes (seizures). Soon after I was sent to a rhumitologist because I was having so many joint pains. I was diagnosed with Fibromyalgia. Soon after I had been diagnosed with this I found a support group on Lyme disease. I had remembered the doctor in the hospital had done a test for this. I wanted to find out more about it, mostly out of curiosity sake. My eyes were opened big time. I felt a deep feeling inside telling me I had found the problem. I mentioned this to my doctor the next time I saw him. I told him I had taken several ticks off of me when I would go camping. I grew up camping, hiking and mountain activities. He felt that it was a possibility and that he would treat me for 21 days with Doxycycline 100 mg twice a day. This of course was not adequate treatment for someone who had chronic Lyme disease. From that day it was understood that I would not talk about this any longer because the antibiotics would treat the Lyme successfully.

Many other times I was taken to the hospital. I continued to worsen. I developed Gastric Esophageal Reflux Disease. I also got Helicobactor Pylori, which I was put on strong antibiotics for. As always I improved a good amount with antibiotics but after being on it and then taken off I would get really sick again. I then began to have worsened tachycardia. I was also tested for sleep apnea, which they found I had a mild case of. My symptoms were increasing and I was being diagnosed with other things. I than began to have high blood pressure and high cholesterol problems. I than started to have numerous cases of bronchitis and sinus infections. I had a CT done on my sinuses and needed surgery done to remove cysts and polyps, repair my drainage tubes and straighten my nose. The Ears, nose, throat specialists also discovered my tonsils were very infected as well as my adenoids. I had five surgeries done at once on July 2^nd, 2001.

My daughter Mary was having problems still with her voice and was found to have nodules on her voice box. She was given antibiotics for two months and steroids (I did not realize that steroids at this time was bad for those who had Lyme Disease). I knew my children had it too. My children were having infections after another. Mary was also having problems with her joints and impetigo sores. She was still grumpy three fourths of the day. I didn’t know what to do. I couldn’t get a doctor to listen.

I switched doctors. I began going to Blackfoot instead of Idaho Falls. The doctor did Lyme tests after several suggestions from me. He did a Western Blot and an Elisa both of which he said was negative. I still didn’t buy it. I knew I had Lyme. The history matched and I knew I had been bitten before. I had also had the EM Rash. I begged for more tests and he did so, repeating the Western Blot and the Elisa. It again came back negative and the doctor had enough from me than. He absolutely stated I did not have Lyme disease. That he would no longer tests me for it. We got in an argument and he just would not budge. The girls had been tested from their pediatrician under the direction of Doctor Charles Ray Jones in CT. I received a phone call from doctor Jones office telling me that Mary and Celeste had positive tests. I asked the doctor I was seeing if he would speak to Dr. Jones and he refused. I asked him if he would read articles if I brought them to him and he clearly let me now he would have nothing to do with it, despite the fact there was no accurate tests for Lyme disease. He said he had not seen a case of Lyme disease in the four years he had practiced in Idaho. I then told him it was because he was diagnosing them all with Fibromyalgia. I went to far. I would advise people now it is not worth fighting a doctor over it. It only angers them and may harm others in the future. It also does not look good on your medical records. I had been fighting doctors’ for many years and I had finally snapped. I of course never did return to him.

Soon after this my daughter Celeste began to have problems again. Her peritoneum cavity was not absorbing the fluid coming from her shunts. Her belly swelled up very big. We took her to the ER. I told the doctor I knew she had trapped fluid in her belly. This had happened once before. I asked if he would do an ultra sound. He said he could see the same thing on an x-ray. So this is what they did. The doctor came back telling us that the x-ray was clear and there was no trapped fluid. I told him I knew she had fluid in her belly and to please order an ultra sound. He told me there was no need and sent us home. I then called her pediatrician the next day. I told him I wanted an ultra sound done and he ordered us to go to the hospital and have it done. You would think doctors would listen to me more. The ultra sound showed fluid trapped in her belly. We than drove her to Salt Lake City, Utah to Primary Children’s Hospital. They did more testing and found that she had a yeast infection in her belly from the spinal fluid. I asked him if he had ever seen this in a case like hers and he said no. I told him that it was probably caused from her Lyme disease. He did not believe this was so. She was hospitalized for a month and I kept insisting that she had Lyme. She was treated with a low dose of antibiotics and anti fungal treatments. She had a picc line put in while she was there. I told them I had scheduled an appointment with Dr. Jones in CT and if they could please leave it in tell then. I did understand their hesitancy and agreed that they should remove it. I just had wanted to spare her more poking.

After her month in the hospital she was allowed to go home. They had put the shunt catheters back into her peritoneum cavity because of an incident prior where they had tried to put the catheters into her heart and she almost died from it.

Cyntha at the age of 18. 140 lb.

Three days later her belly was so big again. We returned to Primary Children’s Hospital in Utah. They drained of much of the fluid taken 600 cc of fluid out. And she had about another 300 cc still in her belly. They felt all they would have to do is revise the shunts put the catheter into the heart and send her home. But they found that she had a staff infection and that she would have to stay another two weeks. I told them once again that she had Lyme disease. Again they called me a hypochondriac to my face and that I was trying to diagnose my own children. They gave her high doses of Vancomyocin, she herxed four days later. I told them this would happen. Everything I told them happened. But even then they excused it as an allergic reaction. She was screaming in pain. Telling me her joints hurt badly. She was feverish and had a horrible headache (a cat scan was done and her head was fine.). She had a rash covering her whole body. You could see this rash on her palms and bottom of her feet (typical of a type of Lyme rash). Celeste also came out with a bull’s eye rash on her left knee. Which I had studied could show up even years later in some cases. Doctors never came to look at it. They called it an allergic reaction without seeing her.

During the two weeks I went to see a wonderful psychiatrist in Salt Lake City, Utah. I wanted someone to prove to the doctors that I was not a mental case. The psychiatrist also concurred that I had Lyme disease and attempted to help me find an LLMD (Lyme Literate Medical Doctor) nearby, but there just was not any close by. We returned home after the two weeks.

After many prayers and tears I knew we were suppose to leave Idaho. We had been trying to work something out with Miracle flight to get the kids down to see Dr. Jones and it just wasn’t working out. With the September 11^th 911 events happening it made it very hard for them to schedule a flight for five people to get there. They had never flown that many. But since I was sick with Lyme also I needed to bring anther adult with me to help with my three children. Bless their souls they tried so very hard but road block after road block kept happening. But after many prayers my husband dropped school in the middle of a semester. We left our home that we were buying with my mom. I left family and friends and we moved to New Holland, Pennsylvania. We had a very nice friend, who I had been talking to online, that let us stay at her place. Her daughter also had Lyme but was in remission at the time. Soon after though, her daughter got very sick again. Her daughter and I had about every same symptom.

The doctor visit with Dr. Jones went fairly well. But I became very confused because he told me Celeste’s test was negative and Mary’s was the only positive tests. Later he even said Mary’s was negative. He wanted more tests done. I had wanted a lot more to be done. I could not understand why we had moved here and yet they weren’t being treated right away. But the doctors are wise in wanting to get a positive test to cover their skins. So many of them are being charged by the OPMC for over treating Lyme patients. It is outrageous that these doctors are being prosecuted for wanting to help Lyme patients. Many doctors are being harassed by health insurances not to diagnose people with Lyme disease because it is such an expensive treatment. Thus far our insurance has not paid for any of the Lyme treatments we have received.

I found a wonderful doctor to treat me for Lyme disease in Kennett Square, Pennsylvania. He treated me for three months on Biaxin. But he got sick and had to quit his practice. We were all being referred to another doctor in Philadelphia. But he refused to even treat us. Despite the fact he was treating all of this sick doctor’s Lyme patients.

We are part of a wonderful Lyme support group in Quaryville. They have been very wonderful to us. My friends, on Lyme-Aid, have also been wonderful. If it had not been for these people I may have quit a long time ago.

We are now currently being helped by a wonderful center in, NJ. Our insurance refuses to pay for anything. We have to pay this out of our own pockets. My three daughters and I have positive PCR Lyme tests now. This helps to a certain degree. But despite these positive tests our health insurance refuses to pay. Even if we try to do some of it in state we are still being refused help by the health insurance (HMO). I will now tell you about each of my daughters and my symptoms so you can really see how devastating this disease is.

Myesha the oldest by two minutes seems to be doing the best so far. She has though come out with a bull’s eye rash. We don’t know if she has been bitten again or if this is one of those times that it shows up years later. I have pictures to prove this. I know have a bull’s eye rash picture for Myesha and her twin Celeste. Myesha currently is having attention span problems. She can’t sit still for one minute. She is often complaining of stomach and back pain. I have picked many ticks off of her since we moved here to Lititz, Pennsylvania. None so far have lodged themselves; that I have noticed anyway. She asks for Tylenol more often now and complains about pain.

Celeste is doing well with her shunts but she is having frequent headaches (cat scans are great). She still has two shunts which she will have all her life. She is complaining of constant joint pain, especially in her right shoulder and elbow. When I message her she is always screaming out in pain. She still is very small for her age. She is now six years old weighing in at 38 lb. But she is growing much better with her nightly feedings. She is also asking for Tylenol a lot more often. She too appears to have ADD. Her memory is really bad. She has even forgotten at times what things are called. She forgets that we have just done something and has to be constantly reminded of things. She is constantly getting sick.

Mary has many psychological problems and appears to have ADD. She cries and complains most of the day. At times she feels she is too tired to walk or even climb the stairs. Her voice is still scratchy and the nodules are still there on her voice box. She at times can’t stand to be touched. Each of my children, have more symptoms but this kind of gives you an idea of what it is like. Mary is also having problems with panic attacks and nightmares. She gets so scared very easily over some silly things.

Cyntha at 250 lb. and very tired!!

I know have had many diagnoses. I have been diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, Gastric Esophageal reflux Disease, high blood pressure and high Cholesterol. Some others are Hoshimoto’s Thyroiditist, depression, constant infections, seizure disorder and many more. I have sensitivity to sun, fast heart rate, and fatigue, pain all over, spots in front of my eyes and so many more. I could give you two pages of symptoms I have had. Some of the symptoms have been very strange; like a feeling of electricity shooting through my back, numbness on the left side of my tongue and much, much more.

My advice is to become aware of Lyme disease. Do not take for granted that you will not have to deal with this. It is rising in numbers. If you are diagnosed with Chronic Fatigue Syndrome, Lupus, Fibromyalgia, MS or many other diseases it would be wise to consider Lyme Disease especially if you have been bit by a tick, have had the EM rash, and have multiple diagnosis. Never rule out Lyme, the tests are not accurate (that is unless you get a positive PCR). Doctors will deny that you may have Lyme disease. I have been to many different doctors. Some of which are neurologists, cardiologists, ENT docs, internal medicine doctors, endocrinologists, OB/GYN docs, rheumotolotists, infectious disease doctors, digestive doctors and more that I am probably missing. Please, please become self-aware and trust your instincts.

This disease has destroyed our lives. We had to give up careers, having more children, our home, having family close by, college and more. We are now suffering financially, emotionally, temporally, etc. We have gained love, spiritually, and have been humbled. We persevere in the face of torment. We will continue to fight for us and for other families. This injustice must not go on. Our torcher can be turned into triumph if we can help someone else. We will beat this disease. We need others to join the army, pick up their weapons and wage on and on. Please help those who are suffering. There have been many others who suffer even more than we. It is not fair that such injustice should not be brought to justice. Please as fellow Americans, family, friends, and human beings help us fight a good fight. If we can accomplish this then our pain has not been in vain.

Left to right Celeste and her twin, Myesha (7) and Mary Elizabeth (6)

ÓJune 16, 2002 by Cyntha Landon

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Cyntha Landon