Hi Their,

I hope these lines find you pain free. I want to welcome you to the site. Again, I want to thank you for your wisdom. Do you mind if I PM you? Hugs, Roz

[For my children, their children, their children's children, and for all children -- they depend on us to ask why and to act on the answers, however difficult.]

This is a quote from a book I am reading, and it sums up the reason that I started this thread. It was not meant to scare anyone, nor did it bring up the subject of cancer. For me, not asking why is much more frightening than accepting the status quo thinking that has produced no answers to the mysteries of this illness.

As the mother of a beautiful 17-year-old daughter who suffers with RSD, I must continue to ask why. I owe that to her. Maybe the connection is not infection at all; but I must investigate that possibility, as well as others, because I could not forgive myself if 5 or 10 years down the road I look back and say, "You know that crossed my mind but I didn't follow up on it." I can't help but think that if you don't know why it is broke, you can't possibly fix it.

Most of you have probably heard about the pastor who was shot this week while giving his sermon. This happened just a few miles from my home. I had met this pastor, as my sister attends his church. On several occasions he came to visit my mom when she was dying in the hospital, and I also enjoyed attending his church with my sister from time to time. He was young, and loved, had a beautiful wife and two young daughters. The day after the shooting, it came out in the news that the 27-year-old gunman suffered from Lyme Disease. When I heard this report, I realized that I had talked with this young man's mom on two separate occasions. She had called me about a year ago because they were checking into hyperbaric oxygen treatments for her son. She shared with me that he had been diagnosed over and over again with mental illness, but it was not until he ended up on life support that they discovered that his brain was full of Lyme. She shared with me the many struggles they encountered with insurance companies who did not want to pay for extended treatments, as well as many of the other battles they had to fight to receive care. The last time I heard from her was about two months ago. She said that her son had in fact benefited from hyperbarics, and she was looking for information about buying a home chamber. The medical system and insurance companies no doubt let this family down; but who would have ever stopped to think that this wonderful pastor and his beautiful, innocent family would also pay such a costly price.

The system is letting down RSD sufferers as well. With the primary relief available coming from drug companies who are motivated by profits, we all need to question where the answers are going to come from. I not only need to attempt to rule out the possibility of Lyme but other infections as well. My daughter's doctor shares the concern that infection is a contributing factor to her RSD, in fact he brought it up. Infection is obviously not a concern for many on the forum; but for some of us, it is a concern that needs to be investigated.

Answers from conventional medicine are not going to happen soon enough for my daughter or for any of the wonderful people who visit this forum. In my opinion, for what it is worth, we all need to be open minded and willing to think outside the norm. A little brain storming never hurts. We can't allow egos, harsh criticism, or hurt feelings to interfere with beneficial dialogue.

Jeanne

Hello,

M.D. OZ is very impressed with the Under the Skin Video. I have never been to a psycologists, or DX with a mental illness. Lyme and co infections effect people different.

http://www.oprah.com/article/oprahan...081126_oaf_moz

Oprah Radio host Dr. Mehmet Oz talks with filmmaker Andy Abrahams Wilson and reporter Kathy Fowler about Lyme disease.
http://www.oprah.com/media/20081126_oaf_20081126_oaf_mo

I am sad to of heard of the young man falling thru the cracks of the system. This is why I have mentioned a Lyme Literate MD on several occasions. Lyme is very complicated and very difficult to treat.

Their is a co-infection with Lyme where HBO treatments could be dangerious from what I have heard.

Lyme is very expensive to treat. I test neg- for Lyme as well. Much Love, Roz

Roz,

It was in fact a Lyme Literate MD who suggested hyperbarics for this young man. It was reported in a local paper that he was on 13 different meds. Who knows what if any part they played. Obviously, most people who suffer with Lyme do not develop mental illness. From what I have been told, it can settle in different parts of the body, creating a variety of symptoms. Like RSD, it is too often misdiagnosed and appropriate treatment is very hard to come by.

Jeanne

Hi Everyone,

I promised God I would help if I got thru the horrid RSD pain that was off the charts.

If you start researching you will see infections have cell forms, cysts, and L forms.

You need to be under an MD's care, a HERX reaction can kill you.

Absolutely nothing can show up in the blood work as well.

Please hang in their, Love, Roz

I wasn't sure what a HERX reaction was so i looked it up.

I'll post what I found in case others weren't sure about what it is.

[Herxheimer reaction
From Wikipedia, the free encyclopedia

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases. The intensity of the reaction reflects the intensity of inflammation present.

The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8]
http://en.wikipedia.org/wiki/Herxheimer_reaction