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Susanne
9/10/2010
12:15:30 PM
| I agree Kathyb, I am game for petitioning government, officials / Washington . . count me in
Susanne |
Kathy
9/9/2010
9:18:40 AM
| My Dr.does my visits over the phone.He does not see his Morgellons patients in his office.He has me on probiotcs only.However,I take the full protoccol in addidtion to the 2 probiotics he has me on.I am not just thinking about the money.I want to be able to go in to my Dr.s office and sit down with him and talk about my signs and symptoms and formulate a plan of care together.I have had two appt.s and was told to call if I need him.I plan to call after 3 months on protoccol and try again to get additional testing. |
Debra
9/9/2010
9:00:49 AM
| Kathy - You can not think of money right now. Go to your doctor and bring the info about Metametrix and tell him that others had results of serious parasites that were previously told "no parasites"from regular testing. You will have to pay metametrix upfront and they will submit insurance for you. You MUST do it. |
Kathy
9/9/2010
8:37:16 AM
| Hi Debra,I had stool and oats done but no stool DNA.My test had the usual no identified parasites however it showed candida overgrowth,0 immunity,chronic pancreatitis,chronic reoccurring kidney infections,ketosis,low bowel function and so on.My doctor believes i have parasites.He asked me to throw any thing I found on my body or surroundings in there also.I threw the moving stuff in with my stool and of course all the labs say negative due to they have not got the criteria to identify the things.How do I go about getting a test that my Dr. won't order.When I asked for hair analysis he did not respond.This was something Pam had suggested.I am looking for a Dr. in south ga with no luck.My current Dr. is great but he is out of my network and I have to pay 40% of everything. |
Debra
9/9/2010
8:13:48 AM
| Kathy - Did you get the Metametrix testing done? This is a lab that tests the DNA in your stool. It can identify what other labs can not. If your testing shows something than you can show that to your family and you can get their help and support. |
Debra
9/9/2010
8:06:11 AM
| Thanks PS but I saw that info on the CDC website a very long time ago and it has not changed. Still I ask what is going on?
A good first step is setting up information booths in health fairs, etc. BUT there can not be scary crazy stuff displayed. It has to be normal looking people that can relay information that is believable. People not infected who believe the problem exists would be ideal. |
nn
9/3/2010
10:31:26 AM
| I agree the march to the white house sounds very appropriate and effective ... the goal is to simply crest awareness that this is a zrREAL disease that needs to be acknowledged. |
PS
9/2/2010
5:15:05 PM
| Debra,
The CDC has all public information posted on their website. CDC Investigation
The latest Updates page contains a link to a pdf. The investigation and in particular contents of the pdf have stirred up a lot of controversy.
Rather than be distracted by what the CDC is doing or not doing I prefer to concentrate on getting well.
PS
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Kathyb
9/2/2010
12:42:42 PM
| I woke up this am and had the EXACT same thoughts!!!
Exact! we need to get organized & we need to petition the government! Groups petitioning state officials & a large group in Washington. It is ridiculous all of us shooting in the dark. Doctors who are trying to help are a part of what we need, but we need to know what we are fighting before we can really know how to fight it. It seems impossible to me that nothing is being done to figure out what this invader is. The task seems so overwhelming though. How do we do this? |
Kathy
9/2/2010
10:52:35 AM
| The most discouraging part of this is trying to convince your own family,even when there is evidence,they try to explain it away.I have shown them these black things comming out of my fingers and feet and they say maybe that is dirt or something to that order.I found a very large clump of fibers this morning in the flower bed,I was told maybe that is something my son-in-law sprayed for spiders.So if this is the way things are with our own,how can we get our message to other closed minds?Furthermore,when I have tried to talk about it,I am looked at like a lunatic.I agree we need to speak out,but historically we have been disbelieved.I do know I could lose my job if they knew.I don't know how to be heard.I wish there was a way to make people see.I agree this is very isolating and lonely. |
Debra
9/2/2010
8:40:09 AM
| This is so ridiculous that people are fighting this on their own and for many many years. Every other disease has it's organizations that fundraise and fight for the cause. Why not this? There should be an organized march in Washington to the White House by every afflicted person and their family and friends. It is time to come out of the closet. As long as people are afraid to get out there and fight nothing will ever be done. |
Kathy
9/2/2010
7:48:03 AM
| Hi,Clod,do you know if the CDC is planning to do any further researching? |
Clod
9/2/2010
3:09:24 AM
| They had kaiser permanente conduct a study in CA 09'.
The study didnt last long before it was handed back to the CDC. |
Debra **
9/1/2010
8:17:22 AM | Does anyone know what is happening with the CDC research? |
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