Dear Lyme Support Group,
We had a fantastic meeting Saturday, March 12th with 36 attending.
*A big ‘THANK YOU’ to Steve Baugh who did such a good job teaching about detoxing and cleansing. The smoothies tasted really good, too. We appreciate you Steve and all the preparation that went into planning for your presentation. Thank you everyone for participating in the discussion. Member idea for Vit. C & Salt detox: www.lymephotos.com [See attachments for Steve’s handouts.]
*Thank you to Dr. Gary Worthen, Shirley Worthen and Craig Carroll from Max International about teaching why Glutathione is important in our bodies. [See attachments] Congratulations to Jean Nelson for winning the Glutathione drawing.
Our business portion went as follows:
Thank you to Chrystal, Trina & Eleah for making reminder phone calls.
We are having a May is Lyme Disease Awareness Month event on Saturday, May 21st. A sign-up sheet went around asking for those that can help plan and/or participate. Please let us know if you’re interested.
Laurie Stringham wasn’t there, but reported to Susan that Rep. Eric Hutchings put in the Healthcare Budget that passed that the State of Utah will conduct studies, hearings and meetings on Lyme Disease for the rest of this year until the session convenes in 2012. Our group will be included in this process!
Kristen Molen reported that she, Jenny & Steve spoke at the Capital last month about Lyme Disease. They were invited by Laurie Stringham who was conducting a mock presentation with several cities’ Chamber of Commerce. Kristen also brought an Under Our Skin DVD and 2 books of Cure Unknown to be ‘checked out’ at the meetings for those wishing to borrow them. Kristen also brought a handout titled, “Let Your Story Be Heard and Help Others”. [See attachment] Thank you Kristen for your generosity!
Chrystal Wagner, our meetings Hospitality person introduced the new members: Angela & Jeff Lavery and son, Leon Carlston, Monica Pack and daughter, Jean & Bob Nelson, Bonnie Dishong.
Also visiting were our guest speakers from Max Int’l and Didi and Hoa from the University of Utah writing program. Didi, Hoa and Mitch are helping our organization with writing about Lyme. This is for a class project.
*One of our members, Michael Dishong has made up his own website and asked to share it with the group. The purpose is for those that would like their Lyme Story on a website to be read by others. The website provides a safe way to communicate your story and to be contacted anonymously by those wanting to contact you. If you’re interested go to www.thefoldsgroup.com.
*The content, recipes, product, website and ideas are not endorsed or supported by ULDA. Use at your own discretion.
On a very sad note, one of our members passed away Saturday morning. Her name is Carmen Whetman. Her Mom, Carma, had contacted us several months ago and said her daughter Carmen and her niece Susan have Lyme. Carmen also had cancer. We’re not sure all the details, but doctors operated on Carmen because she had a lump, we believe in her neck area. It was cancerous and the surgery had caused it to spread quickly. She was sent home to die a couple weeks ago. Susan, her cousin had been in contact with us many times and was planning on being at our March meeting and bringing either Carmen’s husband or sister with her. We are so sorry for their loss. Our thoughts and prayers go out to Susan, Carma and the whole family.
CARMEN WHETMAN Obituary: View CARMEN WHETMAN's Obituary by Salt Lake Tribune www.legacy.com
Utah Lyme Disease Alliance Board-ULDA: Jenny Bezzant, Susan Ossola & Steve Baugh
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Mark's Lyme Story
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Mark's Lyme Story
When Mark turned 11 years old he went to Scout Camp at Camp Tracy, Millcreek Canyon, Utah*. It was just an hour away from home, but he was glad that he was old enough to be on an overnighter now. [3rd week of July 2009]
Mark had a great and safe time…so we thought. When Mark got home from camp, either the same day or next, he came and showed me this huge bite wound on his upper left thigh. It was the biggest rash I had ever seen, kind of like a big ugly spider bite. I said to go show it to Dad, who was at our neighbor’s home, who happens to be an MD. The neighbor told Mark and his Dad if the rash gets bigger or starts to bleed to go and have it seen. Well, two days later, no more rash and all was well…so we thought again.
About 3 weeks later, Mark started complaining of being sore. He had a difficult time walking up & down the stairs. He complained of his heart racing. He had stiff joints. Mark has a brown belt in Karate and we thought he just had over done it. We encouraged baths to help ease the muscle and joint pain. [Actually, lying in the warm water made it harder for him to breathe. The weight of the water was too heavy on his chest.] [2nd week of August 2009] There were too many symptoms appearing even though we cut back on his karate.
At the end of August Mark got the flu and so did his Mom. After a week, on September 7, 2009, Dad took them both to the Urgent Care. They had similar symptoms, except Mom’s was turning into the usual nagging cough and Mark just got worse joint symptoms. He even had a rash running up his shin for about a day. Urgent Care said we were fine and not contagious anymore. At that point, I strongly felt and knew something was wrong with Mark.
We took Mark to the Chiropractor to help ease his body ache. The Chiropractor said something was wrong and he should be seen by a pediatrician. [We had a very sad and unfortunate visit to an arrogant pediatrician that I will not go into right now] By now it is September 21st, and Mark is feeling worse and being seen by a friend recommended pediatrician, Dr. Jonathan Tew. Dr. Tew talked with Mark and Mom for about 15 minutes. During that time he asked 3 times if our family went camping. We said no 3 times! I said our family goes boating once in awhile. We don’t camp. Then Mark said, hey I did go camping, I went to scout camp in July. Then Mark and I both remembered the huge circular rash on his thigh. The very humble doctor got up, left the room and came back with a book of pictures. Mark and I both pointed to the picture with the rash that looked like his. The doctor said that is a rash from an infected tick bit and the symptoms Mark is displaying are from Lyme Disease. The doctor ordered a blood test for Lyme. He said it may not show positive because Mark was only bit about 8 weeks ago and said even though he has Lyme, there is a 50/50 chance it may never show up on a Lyme test and that is usual for Lyme. The test did come back negative. In the meantime, the same day as the blood test, Mark started taking 200mg of Doxycycline for 21 days. He felt much better on the antibiotics. However, before the meds were finished Mark starting feeling some discomfort again. When the meds were gone we went back the doctor and he recommended Tylenol for discomfort and to possibly seek out treatment for juvenile rheumatoid arthritis and such. We are grateful to Dr. Tew that he followed the book, what he was educated to do and knew about Lyme Disease. However, there is more to Lyme than the basics taught in medical school. [Mark did have a more extensive Lyme test, but he had been on antibiotics for too long and it interfered with the test.] I’m not a doctor, however, I know differently now about treatment, from my personal research on the web, books, and firsthand knowledge from individuals and families who have been inflicted with Lyme Disease for many, many years.
I’m thankful that my son did the right thing and showed me the rash. The rash was a red bull’s eye rash with a little white pus like center. Had I been educated, I would have known the white spot was the engorged tick feeding off my son! I feel so sad that I had no clue what it was and how to treat it. Now Mark has chronic Lyme Disease and is experiencing all the terrible symptoms of the disease.
I do not want other children to go through all the awful treatments that my son is going through. I don’t want other parents to see their child suffer and not know what to do and to feel responsible for not acting more quickly and accurately. I feel obligated to help others learn about the prevention of tick bits, the removal of ticks if bitten, and the types of treatment for those bitten by infected ticks.
The last 7 months have been an interesting and painful journey. I will continue to research and share my thoughts on Lyme Disease with those that are interested. For more information and education, please visit http://www.lymediseaseeducate.blogspot.com/
*Mark could have been bitten at home. We had weeds growing in our backyard that summer and ticks are everywhere in Utah, not just the mountain areas, and as I found out recently, even in manicured yards. One fact is…he was bitten in Utah! Written by Mom
Lyme Disease is very difficult to treat if not treated within days of being bit or the bull’s eye rash. In contrast, viruses are generally very hard to treat and bacteria are easily treatable with antibiotics. However, borrelia [Lyme Disease] is a very smart bacteria and changes into 3 different forms to protect itself. Watch a 3 min. DVD trailer, Under Our Skin at http://www.underourskin.com/
Spirochete form:
Very mobile. Spiral/drill capable shape allows penetration into dense tissue and bone. Capable of intracellular infection. Rapidly converts to CWD and cyst form when threatened.
Cell Wall Deficient –CWD form:
Lack of cell wall makes targeting by immune system and antibiotics more difficult. Capable of intracellular infection. Converts Vitamin D to immunosuppressive hormone known as 1,25-D. Causes autoimmunity. Clumps together in dense colonies―inner layers unreachable by antibiotics and immune system.
Cyst form:
Dormant form bacteria are not mobile and do not cause symptoms. Can survive antibiotics, starvation, pH changes, hydrogen peroxide, temperature variation, and most other adverse conditions. Converts back to spirochete form when conditions are favorable.
Mark had a great and safe time…so we thought. When Mark got home from camp, either the same day or next, he came and showed me this huge bite wound on his upper left thigh. It was the biggest rash I had ever seen, kind of like a big ugly spider bite. I said to go show it to Dad, who was at our neighbor’s home, who happens to be an MD. The neighbor told Mark and his Dad if the rash gets bigger or starts to bleed to go and have it seen. Well, two days later, no more rash and all was well…so we thought again.
About 3 weeks later, Mark started complaining of being sore. He had a difficult time walking up & down the stairs. He complained of his heart racing. He had stiff joints. Mark has a brown belt in Karate and we thought he just had over done it. We encouraged baths to help ease the muscle and joint pain. [Actually, lying in the warm water made it harder for him to breathe. The weight of the water was too heavy on his chest.] [2nd week of August 2009] There were too many symptoms appearing even though we cut back on his karate.
At the end of August Mark got the flu and so did his Mom. After a week, on September 7, 2009, Dad took them both to the Urgent Care. They had similar symptoms, except Mom’s was turning into the usual nagging cough and Mark just got worse joint symptoms. He even had a rash running up his shin for about a day. Urgent Care said we were fine and not contagious anymore. At that point, I strongly felt and knew something was wrong with Mark.
We took Mark to the Chiropractor to help ease his body ache. The Chiropractor said something was wrong and he should be seen by a pediatrician. [We had a very sad and unfortunate visit to an arrogant pediatrician that I will not go into right now] By now it is September 21st, and Mark is feeling worse and being seen by a friend recommended pediatrician, Dr. Jonathan Tew. Dr. Tew talked with Mark and Mom for about 15 minutes. During that time he asked 3 times if our family went camping. We said no 3 times! I said our family goes boating once in awhile. We don’t camp. Then Mark said, hey I did go camping, I went to scout camp in July. Then Mark and I both remembered the huge circular rash on his thigh. The very humble doctor got up, left the room and came back with a book of pictures. Mark and I both pointed to the picture with the rash that looked like his. The doctor said that is a rash from an infected tick bit and the symptoms Mark is displaying are from Lyme Disease. The doctor ordered a blood test for Lyme. He said it may not show positive because Mark was only bit about 8 weeks ago and said even though he has Lyme, there is a 50/50 chance it may never show up on a Lyme test and that is usual for Lyme. The test did come back negative. In the meantime, the same day as the blood test, Mark started taking 200mg of Doxycycline for 21 days. He felt much better on the antibiotics. However, before the meds were finished Mark starting feeling some discomfort again. When the meds were gone we went back the doctor and he recommended Tylenol for discomfort and to possibly seek out treatment for juvenile rheumatoid arthritis and such. We are grateful to Dr. Tew that he followed the book, what he was educated to do and knew about Lyme Disease. However, there is more to Lyme than the basics taught in medical school. [Mark did have a more extensive Lyme test, but he had been on antibiotics for too long and it interfered with the test.] I’m not a doctor, however, I know differently now about treatment, from my personal research on the web, books, and firsthand knowledge from individuals and families who have been inflicted with Lyme Disease for many, many years.
I’m thankful that my son did the right thing and showed me the rash. The rash was a red bull’s eye rash with a little white pus like center. Had I been educated, I would have known the white spot was the engorged tick feeding off my son! I feel so sad that I had no clue what it was and how to treat it. Now Mark has chronic Lyme Disease and is experiencing all the terrible symptoms of the disease.
I do not want other children to go through all the awful treatments that my son is going through. I don’t want other parents to see their child suffer and not know what to do and to feel responsible for not acting more quickly and accurately. I feel obligated to help others learn about the prevention of tick bits, the removal of ticks if bitten, and the types of treatment for those bitten by infected ticks.
The last 7 months have been an interesting and painful journey. I will continue to research and share my thoughts on Lyme Disease with those that are interested. For more information and education, please visit http://www.lymediseaseeducate.blogspot.com/
*Mark could have been bitten at home. We had weeds growing in our backyard that summer and ticks are everywhere in Utah, not just the mountain areas, and as I found out recently, even in manicured yards. One fact is…he was bitten in Utah! Written by Mom
Lyme Disease is very difficult to treat if not treated within days of being bit or the bull’s eye rash. In contrast, viruses are generally very hard to treat and bacteria are easily treatable with antibiotics. However, borrelia [Lyme Disease] is a very smart bacteria and changes into 3 different forms to protect itself. Watch a 3 min. DVD trailer, Under Our Skin at http://www.underourskin.com/
Spirochete form:
Very mobile. Spiral/drill capable shape allows penetration into dense tissue and bone. Capable of intracellular infection. Rapidly converts to CWD and cyst form when threatened.
Cell Wall Deficient –CWD form:
Lack of cell wall makes targeting by immune system and antibiotics more difficult. Capable of intracellular infection. Converts Vitamin D to immunosuppressive hormone known as 1,25-D. Causes autoimmunity. Clumps together in dense colonies―inner layers unreachable by antibiotics and immune system.
Cyst form:
Dormant form bacteria are not mobile and do not cause symptoms. Can survive antibiotics, starvation, pH changes, hydrogen peroxide, temperature variation, and most other adverse conditions. Converts back to spirochete form when conditions are favorable.
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