The conference in Austin was great, a huge success. I have to gather my thoughts about all of it, and I met someone there who took scrupulous notes, that I am going to ask her to forward to me-There were approximately 150 who attended-many Morgellon's sufferer's along with some medical people-I think PA's, RN's, but no MD's to my knowledge-some of the key points for those of us that suffer is to keep a positive attitude as best we can, not to isolate, good nutrition and exercise, plenty of water, raw garlic, cutting out refined carbs-all things to boost the immune system-Ginger Savely and Rafeal Stricker talked about the rotation of antibiotics, antihelmintics, antiparasitics as being critical, as "this", whatever this happens to be, adapts to the med and will no longer workm, and that treatment needs to be aggressive. For legal reasons they could not provide patient's with medication regimen, but are willing to work with MD's that contact them, seeking treatment protocols
that they have been having some success with. Also that the min time for tx of these is 18 mo, and up to 3 years using 2-3 antiinfectives at a time. Also that during treatment, symptoms seem to intensify, which I think is important to note; Antifungals have not proven to be that effective and that it is imperative to get monthly bloodwork in terms of complete blood count, metabolic profile and liver function tests to monitor the effect on the system. Also that during these heavy doses of meds it is critical to take milk thistle and sacromyces boulardii to protect the liver. It was discussed that treatment is highly variable, which makes sense.
Dr Wymore talked about his research, and did talk about how initially he found the fibers to appear as braided, under microscope, but has since learned that they appear as tubes with what looked like something wrapping around it when he put the slide up, with crystalline structures. I believe it was a polarized light scope that he used to see this, and that light can pass through the fibers, but is unable to pass through the black specs (I think I got this part right here) . He did say that they do know what the fibers are not (textile), but not what they are, and this will take ongoing GC Mass Spec experiments (don't ask me what this is, it is what I wrote in my notes though:)
Lee Mounger provided entertainment by singing with guitar. A couple of the songs were really touching, particularly one he did that he had originally sung for Cindy and Chas at their wedding. This brought tears for many, due to Chas's passing. A few of the other songs he sang were HILARIOUS, as he sang about "doctor doctor, I got this itch..." and those can be downloaded from the website -Chas Holman foundation/NMO website I believe.
Elizabeth Rasmussen was unable to be there in person, but provided her piece via recording, about how dermatology is taught.
Greg Smith, MD talked about his experiences with this, and was so heartfelt-His biggest piece was to think positive, and care for your whole body with loving attention. Use affirmations, such as saying to yourself, "I deeply and completely love and accept myself" and really believe it. My whole take from what he said was to do what is within your control towards health. Make one decision towards health, then take action on it -for example set a goal of walking three times this week and then do it- actually, I was speaking with him after the conference and talked about how I had run a marathon before this, and made a comment about how that would never happen again, due to the fatigue, and he looked at me and said "why not, is it because you don't want to or.." and I said, "you're right-I could do it again, acutually, no I don't want to, but I would run a half marathon" -His point being to think positive, set goals for yourself, and don't let your thinking get in the way of
doing what you can do now- He was funny, he said "if you have this and you are not depressed, you are in denial"-
Harriet Bishop, the President of the Texas Lyme Disease Association shared her amazing amazing story with the message of staying positive. She mentioned a couple of helpful books as well, one written by David Burns called, Feeling Good, (this is an older book that is actually very good which uses a cognitive behavioral model)- and another, also older one written by Louise Hay called You Can Heal Your Life. She is amazing, she has Lyme and Morgellon's that has affected her hands and fingers for most of her life-she didn't get a correct diagnosis for a number of years and she really suffered, but you would not know it-she seems so sweet and upbeat-also she said she is 79 and this was incredible, she looks like she is in her early to mid 60's.
Also there was a man by the name of David Gibbs who discussed Social Security Disability and he was very informative.
Mark Darrah, Research Director with Dr Citovsky's Morgellon's project, from SUNY, talked about the research there and showed slides. The initial impression was not so positive from the audience when he commented that some of the fibers could be environmental, as they stick to this sticky and waxy substance, which appears to be the focus of the research for this group. In response, Greg Smith got up to speak on his behalf, momentarily, to remind us that he is on our side. He did show a slide with an embedded fiber, and pointed this out, and also did say that there was a gentleman during the break who showed him a fiber that was moving, and he said "yes, I did see it, and it was moving" to help validate this man's experience. So as I said, initially his speech did not create feelings of "warm fuzzies" if you will, but after Greg got up and intervened and said what he said, the tension seemed to subside and the atmosphere became more relaxed.
There was a question and answer session, in which all of the presenters went up on stage and answered questions from the audience. This was for about 45 min, but could have gone on for hours if it was possible.
What was so impressive to me was the amount of love and support and also the willingness of all the presenters to make themselves available for questions etc. It was very well put together and the ability to network with others and exchange information was great. It was so interesting how people came to find out about the conference or what have you-I thought everyone belonged to one of these web groups, and over and over when I was asked about how I had found out about the conference, and I said the web/web group-there were few wh knew about the webgroups I am part of-I don't know if I would have survived this without all of the support I get from being a part of these groups.
Following the conference there was a dinner at a local mexican restaurant that you could attend (dutch of course) and this was also great-again, more opportunity to talk and network.
All in all, this did more for me in terms of support particularly, than years of therapy could do-that's just me though, maybe others felt differently ??
I did take some pictures which I will try to upload (it's my daughter's camera and she has to find the cable and then teach me how to upload them) so this may take a couple of extra days.
Hopefully this conference will become an annual event, which is something that I know a few mentioned to Cindy-who really, again, outdid herself in putting this together so well. I hope this sums it up and that I did not forget anything or anybody, and that I presented what was presented in an accurate and understandle way!
If you have any questions, feel free to email me and I will try to respond to the best of my ability.
I am so GRATEFUL that I went and will be there next year!
I cannot believe I almost forgot this: PLEASE PLEASE Email Oprah, I believe it is Oprah.com and there is a link where you can email her-in the subject line type in "Morgellons" and talk about your interest and desire that she do a show discussing our cause-ask a friend to do this also-I know that this has come up in the past, but if we ALL do this with the same subject line, hopefully we will have success (remember that old line "If at first you don't succeed, try try again) please do this for yourself and all of us!
OK, now that's all :)
Take care,
Lori
Wendy <WETRIPP@...
That thread wouldn't show for me either. I can get into LymeBusters
though.
Wendy