UTAH LYME DISEASE ALLIANCE - ULDA: June 2010

Wednesday, June 9, 2010

*Reminder*

*Lyme Support Meeting*
This Saturday, June 12th 3pm-5pm
Alta View Hospital, Sandy
Discussions lead by Julie & Scott Everson

New ideas about how to bring Lyme Awareness to Utah and when!

New people are planning on attending. Please come and give support J

Also, a couple new doctors to add to the roster and a ‘new’ treatment for Lyme. Anyone heard of oxygen treatment for Lyme?…new to me.

Hope to see you Saturday!

Susan *Ü*
lyme@q.com

Saturday, June 5, 2010

No Lyme Support Meeting today! It’s been changed to Sat. June 12th 3pm-5pm.

FYI- No date set for upcoming Lyme Awareness event.

Many in the group want to hold it in Lehi City, where Lyme has had some media attention.

I called Thanksgiving Point. Prices range from $3,000.-$5,000. just for the rental of facility. The process to ask them to donate the facility for a charitable function is a process…maybe get started now for next May 2011.

Any news about using Noni in Provo?

I have called and emailed Lehi councilwoman, Kaye Collins, several times. Have not heard back, yet. Lehi City has a huge park facility called Legacy. It might be more affordable to hold it there. Lehi Days is the week of June 21st-26th, so that week won’t work. Does anyone in the ‘group’ know Kaye or would be able to contact her about this?

Other possible dates for Lyme Event are July 10th, July 17th, July 31st [July 3rd and July 24th are holidays].

Any other suggestions?

The postponement of Utah’s 1st Lyme Disease Awareness Picnic was a big disappointment. However, we can’t let this good endeavor die. After all, the spirochete that’s in everyone isn’t dying!! We need to press forward and continue to help get the word out. I contacted the Lyme Disease Association* in New Jersey to get their brochures. They can send up to 200 Free brochures to you, about 4 different types, [I got the variety pack]. Anything above 200 there is a shipping cost. I’ve been handing them out to family, school teachers, administration, scouts, anyone that will associate with my son. *www.lymediseaseassociation.org

I’ve contacted several celebrity charitable organizations here in Utah. I’m hoping to hear back from at least one of them! If not, I’ll contact them all again. I’m going to ask Christine Jacobsen, Pharmacist, who spoke at our last Lyme Support Meeting and has done specials with KSL Studio 5 Health News if she will contact KSL and see if she can do a special on Lyme Disease.

I have heard from 3 people since the Lyme Picnic was cancelled. People had heard about it! They are all in the process of needing help with their Lyme situation.

I encourage everyone to come to next week’s meeting.

Thank you J

Susan Ossola

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.

UTAH LYME DISEASE ALLIANCE - ULDA

Wednesday, June 9, 2010

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