Utah Lyme Disease Support Meeting
This Saturday, May 14th 1pm-3pm
Alta View Hospital-Classrooms A & B
9660 S. 1300 E., Sandy, Utah
Refreshments served.
For any questions/concerns, please contact Susan at 801-635-7272 or utahlyme@q.com
[May 21st Lyme Event is postponed. More info at this month's meeting.]
~This months meeting will be a Round [Square] Table discussion on the past 4 month's of our group presentations.
~Plus share about treatments being used and places to get treated.
~Meet new members and their Lyme stories. We've had 10 new people since January and 5 new people contacted us since our last meeting!
~What's ahead with our Lyme Event this summer?
~Laurie Stringham, a member of our group, will be sharing about Non-profits and the need to have a 5-7 or more board members to be effective.
~Book review of Cure Unknown by Michael Ossola.
**KIDS CORNER** There are many kids who have Lyme Disease and need support. There are many kids who have parent(s) with Lyme Disease and need support, too. Classroom B is where the 'kids/teens' can hang out. They can talk, play their DSi's, play with quiet toys, board games, puzzles, color, bring white board markers, share their cell phone numbers, facebook accts., etc. This is intended to let kids/teens that are old enough to communicate and express their feelings about having the disease or living with parent(s) that have it. [Not for babysitting purposes.] Thank you. Parents will need to provide any 'toys' and/or snacks for their children.
**May is National Lyme Disease Awareness Month**
Please make a difference in your area by bringing awareness to others. Some suggestions; write your Lyme story and make copies to hand out, print out business/index size cards with facts about Lyme and the Lyme meetings and give out. Today, my daughter and I took a cheap plastic 'lyme' green tablecloth and cut it lengthwise and made a huge bow around our large rock formation. It's a great conversation piece! Put up Lyme information at your local library or community center. Talk about Lyme with the Boy Scouts or Girls camp groups.
Thurs. May 19th @ 12am [midnight] is the showing of Under Our Skin on Channel 9 KUEN. Hopefully, you have a way to record it and watch it at a more convenient time. Please let your family & friends know about this. Please send a 'thank you' to KUEN for letting it be shown. Maybe add your personal Lyme story with it. Who knows...maybe someday they'll show our Utah Lyme Disease documentary!
Utah Lyme Disease Alliance-ULDA DISCLAIMER FOR IT'S LYME SUPPORT MEETINGS, GENERAL INFORMATION VIA EMAILS & WEBSITE.
The officers and members of ULDA are NOT DOCTORS AND HAVE NO MEDICAL TRAINING. Some of the treatments discussed in our group meetings, emails and website are not FDA approved modalities, and this group is NOT advising that you use these treatments on yourself. We do not encourage or advise medical treatments for anyone, nor do we `treat or cure' disease. Please see a licensed physician for medical advice. Living in the USA, we have the right to discuss among ourselves any medical treatment we want, including experimental medical treatments we may choose to undergo in the privacy of our own home. Much of the information from ULDA is from people sharing their own PERSONAL experience for information purposes only. The poster (message author) or caller NEVER intends their post or converstations to be interpreted as medical advice UNDER ANY CIRCUMSTANCES. If you are not able to comply with this disclaimer for any reason, or if you are not able to refrain from interpreting posts, emails, group meeting information as personal medical advice, please do not come or participate with this group or accept emails from this group immediately. This group is not a medical advisory group, but is instead a place to share and exchange information among private citizens, and as such, it falls under protection of the Constitution of the United States of America. Utah Lyme Disease Alliance is not affiliated with any religious or political organization and remains neutral to religion and political party.
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Adults $12 S-XL, $14 2X. Youth $10 S-XL
Calendar
- Sept. 10th- Sat. 1pm-3pm Lyme Support Meeting at Alta View Hospital, Sandy - Classrooms A & B Dr. Jason West of The West Clinic, Pocatello, ID
Utah Lyme Disease Awareness T-Shirts
Adults $12 S-XL, $14 2X. Youth $10 S-XL
Under Our Skin DVD -3 min. Lyme Documentary trailer
Other Lyme Disease sites
Labels
- Events (1)
- Monthly Meetings (1)
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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