Austin Tx 4-4-09 Conference: Press coverage

[dkcisdesparate]

Hello to All...
I attended the Austin conference last Saturday.
Unfortunately, I feel like I left with more questions than answers.
Do I need to be a scientist to understand all of this? Maybe
my brain has turned to such mush that I'm just incapable of comprehending anything beyond a kindergarten level.
I am desperate to get better so what stands out most for me is that
Ginger Savely claimed to be successful in treating her patients.
She is very aggressive with antibiotics and antihelminthic drugs.
Confusing for me because following Dr. Staningers advice, I've done away with antibiotics. Now I'm reconsidering.
Dr. Uppal couldnt stay for her presentation and I would have liked to have heard from her. I do know however, that she also uses antibiotics and antiparastic meds.
I am very curious to know who has been treated by these Doctors and the success rate they have.
For those familiar with Dr. Staningers approach, why wasnt Far infrared mentioned as treatment during the conference? Why isnt she at these conferences?
I am very frustrated with all the scientific terms. Most of the information, theories and articles I read, I feel like a need a translation or book entitled,
"Understanding Morgellons for Dummies".
Does anyone else feel like this?
Moreover, the more information I obtain, the more fearful I become of everything!! I am now afraid to drink bottled water and tap water.
Is there anything safe to drink?
Back to the conference...I have a few pages of written notes from the conference. I couldnt begin to summarize them in a sensible way but am happy to look through them to see if I have any information for a specific question.
Still desparate...dkc

[Sadsack]

Dkc -
I think it is totally understandable why no one with Morgellons could walk out of an all day scientific conference, go to their laptops, and report all the relevant information accurately and understandably.
It's only been a couple of days!
I think people need to wait for the DVDs, buy them, and glean the information for themselves. It's too much to expect any one person to do, just hearing it all once.
I know when I get the DVDs I'll be taking breaks, listening to things several times, etc. Even then I doubt I'll really "get it all".
Your point is well taken, however, about the selection of speakers. Clearly, it reflects the bias of the organizers (NMO) of the event. Of course, it is their right to choose the speakers that reflect their own orientation. They are not obligated to present the full spectrum of views.
I found the info presented by Savely interesting as well. I guess the "successes" don't post on the boards, because I've only heard a little bit about people getting better with western medicine.
I'll speak for myself. Dr. Uppal was the first doctor who treated me, and I got HORRIBLY sick after 4 weeks on the types of meds Ginger uses. At that point I quit taking meds (on my own) and started my own path of "healing", using supplements, no chemicals, etc. After I got about 50% better (3 months into it), I "hired" Dr. Staninger, who took me the rest of the way.
I want to say I am "relatively" symptom-free, but I can see that my skin "looks a little funny". Too many "freckles", an occasional sting in my feet, and some joint pain. My blood work is not normal - very high Epstein-Barr and Cytomegalovirus, and high Silicon. Rest of the report is pending.
So...I am not "cured". But I can bet you anything that the other docs that treat Morgellons do not test for the things I've been tested for (so don't even know those labs are off).
FOR ME - detox and build up - naturally - are the ticket. Not speaking for anyone else, though I do know others who use Dr. Staninger and have gotten enormously better - that's their story to tell, but many are shy about telling it because of the general "anti-Staninger" sentiment out there. That sentiment is based on her explanation of the cause of Morgellons - no one wants to believe this is manmade and deliberate.
Well, you don't have to believe the explanation - all you have to believe is the treatment.
In the pre-Morgellons days, who understood what bacteria does and how antibiotics work??? You just take them - you don't need to understand!
Same goes here - you don't have to agree to do what you need to get better.
SS

[dkcisdesparate]

Thanks for the insight. I am hesitant about going the antibiotic route and very eager to find out what my own tests reveal. I suppose, and certainly hope that will help guide me with a treatment plan.
I want my life back.
I appreciate everyone sharing different treatments they have used on themselves to alleviate sores, itching, fatigue, and all the other glorious ailments we get to experience with this disease. I also understand people want to share information and theories about this disease. I would appreciate it even more if we shared our success and failures with the known doctors that are treating this disease.
My brain is too fried to absorb one more scientific article or look at another slide of something under the scope. Admittedly, I never loved science, particularly biology, but I would love to know enough to understand how to get my health back!
dkc

[jonsi]

Hey everyone!

Remember last year when I attended the conference? I took some good notes and posted them, but it took me a few weeks. Why? Because everything I heard at the convention was so depressing and I learned nothing new in Austin.

dkcisdesperate ~ Savely's treatment is very expensive ($500 for a consultation in 2007). Her speech at the '08 convention totally depressed me when she compared "M" to cancer and how dangerous her treatment protocol was.

I truly believe that natureopathic/homeopathic medicine works in the long run. It has for me and my daughter.

Sadsack, I really enjoyed reading your most recent post under this thread. Thank you for your insight on what has helped you.

In the white light,
~jonsi

[kmar]

Hi dkcisdesparate,

Here are no scientific questions.

1. Did they allow personal camera's this year or camera phones?

2. I have not been able to find any news coverage of the event. While you were there, was anyone from newspaper or TV there?

3. Last year, Lori Kramer posted pictures for us right away to see, she is a freelance writer from Houston, ...... Did you happen to meet her? She is friends with Cliff Mickelson.

4. If you don't mind, how did you get there and how long was your trip?

I use to live in Houston and did alot of camping out there and River Rafting. I LOVE San Antonio. It was years ago, but I would imagine the town is still a great place to visit.

I am glad you were able to go and thanks for sharing what you remember. I wonder too about Dr. Stanniger and I think someone who is so knowledgable about the environment and toxins would have been very interesting to listen to.

Once I am dismissed from "western Medicine" or rather while they are still doing physical therapy with me and still running Labs on my blood, I will start a heavy heavy detox program. Right now, I want them to find whatever may be in my blood to find out why my body is failing me so bad. Once I know what I "have" aside from the "unknown" morgie organism ..... I will know which herbs will be best for my particular pathogens.

So I am in agreement with many here on the "natural" way to heal.

Thank you again!

[kmar]

Jonsi,

I just recently was able to see the video's from last year and agree that there was NOTHING new in 08. I am sorry that you were disappointed last year but sure do understand after seeing the videos that after you made the trip and spent the money. What a bummer.

It appears the turn out this year was less than last year. Some who attended have been extremely unfairly negative towards those of us who did not attend without even considering everyone's individual circumstances.

I can't understand why this individual came back with one of the most negative attitudes I have seen. Could it be Lyme Rage, gee I don't know, but some this one can't seem to control their temper and is trying to place blame and guilt on others without any thought whatsoever.

Kmar

[Sadsack]

Kmar -
I review posts on many boards and only saw ONE poster chastising people for not attending. And that was on a board that historically is anti-NMO. My own opinion, but I believe the frustration that man was voicing was actually speaking to what amounts to a boycott of NMO-sponsored events.
There clearly is a battle line drawn in the sand on that board - MRF vs NMO. Fortunately, not everyone on that board has bought into that horribly destructive divide. On the other hand, the people who articulate an inclusive support for all researchers get stifled and many are afraid to speak out.
Incidently, there was a bigger turnout this year than last year.
That's why I love this board. Although disagreements between individual posters sometimes arise, they are genuine differences in opinion, and not thinly-disguised efforts to undermine a particular group.
Carla is the only moderator here, and she manages the biggest, busiest Morgellons board on the internet. She is supportive and NEVER engages in those types of politics. (now WORLD politics...lol...that's another story!)
Thanks Franky and Carla for providing an open and fair forum.
SS

[kmar]

I heard from two people that 75 attended this year. Thought last year it was 100 or max 150 ( at least that is what a thread stated last year when people were reporting back )

I wonder if any of the nurses on the NMO nursing panel went. Last year Belinda did go and I know she lives nearby.