Re: I really really need support...More food for thought / LET'S TAKE ACTION

[Guest guest]

I am right there with you southernbuggirl!! I dunno, but it might help to visit something I just posted to Cee Cee...I am not going to sit here and say I have all the answers...far from it because I am still sick with this and battling much of what you are and I even ended up moving! I think there are just so many variables and much of what has helped others have not helped me so I am inclined to believe I have another complication and/or organism involved. I also think it has to do with how long you have been sick and how many layers of the onion you have to peel...the amount of fungus you have been exposed to etc. because it appears that it is the fungus that is in your environment and now perhaps inside of you that is attracting more insects and in turn, making your life a living nightmare. Your house could be making you sicker because of this and that is a HUGE area to keep clean without any help. I have another post on this subject of whether to move or not--but in short, I would first maybe try and stay where you are and investigate if you could possibly have moisture/water problems, then take other courses of action to stop any further insect attraction. I started the process of high heating my house upon the advice of a few others who had luck doing this and think this could have resolved a lot of the problems within the walls had I continued with this. Marie, Bill, and many others suggestions are really good for eradicating the insects, but all in all, I just got too sick and didn't have the help, nor the money needed to follow through on much of what could be done to make my house a healthy living environment. So I moved but the infestation moved with me; and I might add, it created so much more stress on me than I could ever describe. Much more than it would have if I had been able to stay put and dealt with the original source of infestation--within me but also within the walls of my house. That being said, this was just MY experience and I also have a severe case of Morgellons which has been progressively taking its tole on my body. So while I don't really know your situation, it might not be as stressful for you to move if you have the help and support from your husband. However remember... it is possible that you will go to all that effort and if things that you are taking with you haven't been decontaminated properly--whether you have birdmites or morgellons-- you will still be finding yourself with the same battle. While it still might be easier to be cleaning a smaller place there are other challenges to think through that might emerge from this transition of uprooting everyone: in a smaller place will you have enough storage space and room for a family of five? Because right now, clutter is your enemy and things should be cleared out and simplified as much as possible no matter where you are living. Anyway, something to think about...these are just some of the problems I had to confront after moving but perhaps could be more easily resolved with your family, depending upon your situation. Regardless, I am sorry for what you are going through and will help in any way I can.That being said, while I could spin your wheels right now, telling you what has helped me and what hasn't, for the moment I just wanted to pause and take this opportunity to get you and others to focus for a moment on a message that I think is very important. I didn't know where to post this, but noticed the main people that I often see when posting here, so thought I would try and get the word out so that this message could be passed along without being lost in the shuffle of posts: I think we need to get ANGRY that this weird phenomenon is continuing to destroy lives, now affecting people all over the world. We can no longer afford to be quiet about this anymore!I recently chose to try and do something positive to help in our battle with those who are dealing with insect infestations, but specifically, with Morgellons disease. After the Washington Post article, I began to see the same pattern emerging...more stalling, more uses of the word 'delusion' and I got discouraged but also mad about this and the way the media was not helping us in any way...apparently so did a lot of others and some were talking about writing into the CDC and many were throwing around different dates etc.; but seeing that not all were in on this, I felt that it wouldn't do any good if we just had a few letters trickling in at different times. I sensed there would be no cohesion on this because there is no organization going on to bring it all together and and get a lot of people writing into the CDC together--which is what we need, NUMBERS; I suspected that this subject would again be eventually dropped if we didn't do something different this time. We are all so scattered in location and but also in where we post our thoughts so it stands to reason that this frequently happens.So I decided to start a thread in the Lymebusters site called 'What State do you live in"?I started this with hopes to form some support groups and/or task groups for those who are not as sick, to make decisions on what we can do to make this disease come to the forefront--taking action has been hard for me since I too, am not as strong or as healthy as most, but I think that once again, we have to summons all the strength we can and get angry...this is inhumane with what we were given here and unconscionable! I asked the administrator of that site to see if he would do a mass mailing of this question, since I knew that we could reach a lot more people that were no longer posting or had gone to other forums. I am doing this because I think at this point it is futile waiting for the CDC to come up with anything that will help us and something has to be done!!! I believe this is too political and that 'they' ARE trying to sweep this under the rug, for fear it will further bring down our economy. But we cannot continue to be a lost cause anymore and remain quiet. They will have no choice but to address this disease if we make our voices heard, just like the AIDS patients did in the beginning. Strength is in numbers and it is quite uplifting to see how many are posting where they are from...it is getting us all together which is what I saw we greatly needed...the first start in forming some cohesion. Since then we have gotten a message from a woman in the UK who is forming the same kind of organization and is planning on taking action. She posted a chart of their plan and offered to share and help us with our process of pulling all this together. So this too, has been encouraging since their grassroots movement is involving not only the UK, but other countries in Europe as well.Anyway, the administrator was great and agreed to do this mass mailing with my message, also adding his thoughts about privacy, which was his main concern as well as spamming email to all lymebusters members. But I think he felt the same need since he too has been stricken with this disease...anyway, the response has been GREAT! So even if you will be unable to participate any further, if you feel inclined to join the movement, please go and sign your pin name and report the state from where you are from --here is the link to see the beginning message in the thread: What State do you live in? Hope things get better for you southernbuggirl and thanks to all who are wanting to get involved in bringing this subject to the forefront.LovePdidit

[Guest guest]

I want to do this too... I have a hard time signing in on Lymebusters for some reason. I'm not that computer savy (believe me when I say this is TRUE), but I can never get onto the Lymebusters board. I can read posts when the board is open without signing on. Don't know what to do about that.

Re: I really really need support...More food for thought / LET'S TAKE ACTION

I am right there with you southernbuggirl!! I dunno, but it might help to visit something I just posted to Cee Cee...I am not going to sit here and say I have all the answers...far from it because I am still sick with this and battling much of what you are and I even ended up moving! I think there are just so many variables and much of what has helped others have not helped me so I am inclined to believe I have another complication and/or organism involved. I also think it has to do with how long you have been sick and how many layers of the onion you have to peel...the amount of fungus you have been exposed to etc. because it appears that it is the fungus that is in your environment and now perhaps inside of you that is attracting more insects and in turn, making your life a living nightmare. Your house could be making you sicker because of this and that is a HUGE area to keep clean without any help. I have another post on this subject of whether to move or not--but in short, I would first maybe try and stay where you are and investigate if you could possibly have moisture/water problems, then take other courses of action to stop any further insect attraction. I started the process of high heating my house upon the advice of a few others who had luck doing this and think this could have resolved a lot of the problems within the walls had I continued with this. Marie, Bill, and many others suggestions are really good for eradicating the insects, but all in all, I just got too sick and didn't have the help, nor the money needed to follow through on much of what could be done to make my house a healthy living environment. So I moved but the infestation moved with me; and I might add, it created so much more stress on me than I could ever describe. Much more than it would have if I had been able to stay put and dealt with the original source of infestation--within me but also within the walls of my house. That being said, this was just MY experience and I also have a severe case of Morgellons which has been progressively taking its tole on my body. So while I don't really know your situation, it might not be as stressful for you to move if you have the help and support from your husband. However remember... it is possible that you will go to all that effort and if things that you are taking with you haven't been decontaminated properly--whether you have birdmites or morgellons-- you will still be finding yourself with the same battle. While it still might be easier to be cleaning a smaller place there are other challenges to think through that might emerge from this transition of uprooting everyone: in a smaller place will you have enough storage space and room for a family of five? Because right now, clutter is your enemy and things should be cleared out and simplified as much as possible no matter where you are living. Anyway, something to think about...these are just some of the problems I had to confront after moving but perhaps could be more easily resolved with your family, depending upon your situation. Regardless, I am sorry for what you are going through and will help in any way I can.That being said, while I could spin your wheels right now, telling you what has helped me and what hasn't, for the moment I just wanted to pause and take this opportunity to get you and others to focus for a moment on a message that I think is very important. I didn't know where to post this, but noticed the main people that I often see when posting here, so thought I would try and get the word out so that this message could be passed along without being lost in the shuffle of posts: I think we need to get ANGRY that this weird phenomenon is continuing to destroy lives, now affecting people all over the world. We can no longer afford to be quiet about this anymore!I recently chose to try and do something positive to help in our battle with those who are dealing with insect infestations, but specifically, with Morgellons disease. After the Washington Post article, I began to see the same pattern emerging...more stalling, more uses of the word 'delusion' and I got discouraged but also mad about this and the way the media was not helping us in any way...apparently so did a lot of others and some were talking about writing into the CDC and many were throwing around different dates etc.; but seeing that not all were in on this, I felt that it wouldn't do any good if we just had a few letters trickling in at different times. I sensed there would be no cohesion on this because there is no organization going on to bring it all together and and get a lot of people writing into the CDC together--which is what we need, NUMBERS; I suspected that this subject would again be eventually dropped if we didn't do something different this time. We are all so scattered in location and but also in where we post our thoughts so it stands to reason that this frequently happens.So I decided to start a thread in the Lymebusters site called 'What State do you live in"?I started this with hopes to form some support groups and/or task groups for those who are not as sick, to make decisions on what we can do to make this disease come to the forefront--taking action has been hard for me since I too, am not as strong or as healthy as most, but I think that once again, we have to summons all the strength we can and get angry...this is inhumane with what we were given here and unconscionable! I asked the administrator of that site to see if he would do a mass mailing of this question, since I knew that we could reach a lot more people that were no longer posting or had gone to other forums. I am doing this because I think at this point it is futile waiting for the CDC to come up with anything that will help us and something has to be done!!! I believe this is too political and that 'they' ARE trying to sweep this under the rug, for fear it will further bring down our economy. But we cannot continue to be a lost cause anymore and remain quiet. They will have no choice but to address this disease if we make our voices heard, just like the AIDS patients did in the beginning. Strength is in numbers and it is quite uplifting to see how many are posting where they are from...it is getting us all together which is what I saw we greatly needed...the first start in forming some cohesion. Since then we have gotten a message from a woman in the UK who is forming the same kind of organization and is planning on taking action. She posted a chart of their plan and offered to share and help us with our process of pulling all this together. So this too, has been encouraging since their grassroots movement is involving not only the UK, but other countries in Europe as well.Anyway, the administrator was great and agreed to do this mass mailing with my message, also adding his thoughts about privacy, which was his main concern as well as spamming email to all lymebusters members. But I think he felt the same need since he too has been stricken with this disease...anyway, the response has been GREAT! So even if you will be unable to participate any further, if you feel inclined to join the movement, please go and sign your pin name and report the state from where you are from --here is the link to see the beginning message in the thread: What State do you live in? Hope things get better for you southernbuggirl and thanks to all who are wanting to get involved in bringing this subject to the forefront.LovePdidit

[Guest guest]

Pdidit,

Thank you so much for your message. You are such an amazing support to folks

around here and you offer great advice and insight. I am especially grateful

for your thoughts regarding moving. I think you are right that we need to

attempt to sit tight and fight a bit more. I am having the house assessed for

mold this week. I know there is a problem in our bathroom with a air jet tub we

have - our master bath backs up to our bedroom wall and the master bedroom is

where the black specs are often found. I will keep you all posted as to what

they find.

I totally agree we need to organize and fight. My husband runs a foundation and

basically raises money for a living. He is willing to help us funding wise. I

have very bad days but also good ones and can put some focused effort into

trying to help you pull this together. I work for a consumer device company and

am fairly tech savvy and a good project manager so please let me know how my

skills can be utilized. I had to re-register on the LymeBusters site so I will

post on the thread " what state are you from " - just fyi - we live in South

Carolina.

I have often thought about those folks who do not have access to resources to

fight. Just like everyone else we have spent so much time, money and effort

battling this bug. Wouldn't it be fabulous to have some sort of emergency fund

(through donations of money & prodcut) available for people in need? I cannot

imagine what we would have done had we not been able to purchase certain things

that have helped. Just a thought.

Thanks for all you do!

SBgirl

>

> I am right there with you southernbuggirl!!

>

> I dunno, but it might help to visit something I just posted to Cee

> Cee...I am not going to sit here and say I have all the answers...far

> from it because I am still sick with this and battling much of what you

> are and I even ended up moving! I think there are just so many variables

> and much of what has helped others have not helped me so I am inclined

> to believe I have another complication and/or organism involved. I also

> think it has to do with how long you have been sick and how many layers

> of the onion you have to peel...the amount of fungus you have been

> exposed to etc. because it appears that it is the fungus that is in your

> environment and now perhaps inside of you that is attracting more

> insects and in turn, making your life a living nightmare. Your house

> could be making you sicker because of this and that is a HUGE area to

> keep clean without any help. I have another post on this subject of

> whether to move or not--but in short, I would first maybe try and stay

> where you are and investigate if you could possibly have moisture/water

> problems, then take other courses of action to stop any further insect

> attraction. I started the process of high heating my house upon the

> advice of a few others who had luck doing this and think this could have

> resolved a lot of the problems within the walls had I continued with

> this. Marie, Bill, and many others suggestions are really good for

> eradicating the insects, but all in all, I just got too sick and didn't

> have the help, nor the money needed to follow through on much of what

> could be done to make my house a healthy living environment. So I moved

> but the infestation moved with me; and I might add, it created so much

> more stress on me than I could ever describe. Much more than it would

> have if I had been able to stay put and dealt with the original source

> of infestation--within me but also within the walls of my house.

>

> That being said, this was just MY experience and I also have a severe

> case of Morgellons which has been progressively taking its tole on my

> body. So while I don't really know your situation, it might not be as

> stressful for you to move if you have the help and support from your

> husband. However remember... it is possible that you will go to all

> that effort and if things that you are taking with you haven't been

> decontaminated properly--whether you have birdmites or morgellons-- you

> will still be finding yourself with the same battle. While it still

> might be easier to be cleaning a smaller place there are other

> challenges to think through that might emerge from this transition of

> uprooting everyone: in a smaller place will you have enough storage

> space and room for a family of five? Because right now, clutter is your

> enemy and things should be cleared out and simplified as much as

> possible no matter where you are living. Anyway, something to think

> about...these are just some of the problems I had to confront after

> moving but perhaps could be more easily resolved with your family,

> depending upon your situation. Regardless, I am sorry for what you are

> going through and will help in any way I can.

>

> That being said, while I could spin your wheels right now, telling you

> what has helped me and what hasn't, for the moment I just wanted to

> pause and take this opportunity to get you and others to focus for a

> moment on a message that I think is very important. I didn't know where

> to post this, but noticed the main people that I often see when posting

> here, so thought I would try and get the word out so that this message

> could be passed along without being lost in the shuffle of posts: I

> think we need to get ANGRY that this weird phenomenon is continuing to

> destroy lives, now affecting people all over the world. We can no longer

> afford to be quiet about this anymore!

>

> I recently chose to try and do something positive to help in our battle

> with those who are dealing with insect infestations, but specifically,

> with Morgellons disease. After the Washington Post article, I began to

> see the same pattern emerging...more stalling, more uses of the word

> 'delusion' and I got discouraged but also mad about this and the way the

> media was not helping us in any way...apparently so did a lot of others

> and some were talking about writing into the CDC and many were throwing

> around different dates etc.; but seeing that not all were in on this, I

> felt that it wouldn't do any good if we just had a few letters trickling

> in at different times. I sensed there would be no cohesion on this

> because there is no organization going on to bring it all together and

> and get a lot of people writing into the CDC together--which is what we

> need, NUMBERS; I suspected that this subject would again be eventually

> dropped if we didn't do something different this time. We are all so

> scattered in location and but also in where we post our thoughts so it

> stands to reason that this frequently happens.

>

> So I decided to start a thread in the Lymebusters site called

> 'What State do you live in " ?

>

> I started this with hopes to form some support groups and/or task groups

> for those who are not as sick, to make decisions on what we can do to

> make this disease come to the forefront--taking action has been hard for

> me since I too, am not as strong or as healthy as most, but I think that

> once again, we have to summons all the strength we can and get

> angry...this is inhumane with what we were given here and

> unconscionable!

>

> I asked the administrator of that site to see if he would do a mass

> mailing of this question, since I knew that we could reach a lot more

> people that were no longer posting or had gone to other forums. I am

> doing this because I think at this point it is futile waiting for the

> CDC to come up with anything that will help us and something has to be

> done!!! I believe this is too political and that 'they' ARE trying to

> sweep this under the rug, for fear it will further bring down our

> economy. But we cannot continue to be a lost cause anymore and remain

> quiet. They will have no choice but to address this disease if we make

> our voices heard, just like the AIDS patients did in the beginning.

> Strength is in numbers and it is quite uplifting to see how many are

> posting where they are from...it is getting us all together which is

> what I saw we greatly needed...the first start in forming some cohesion.

> Since then we have gotten a message from a woman in the UK who is

> forming the same kind of organization and is planning on taking action.

> She posted a chart of their plan and offered to share and help us with

> our process of pulling all this together. So this too, has been

> encouraging since their grassroots movement is involving not only the

> UK, but other countries in Europe as well.

>

> Anyway, the administrator was great and agreed to do this mass mailing

> with my message, also adding his thoughts about privacy, which was his

> main concern as well as spamming email to all lymebusters members. But I

> think he felt the same need since he too has been stricken with this

> disease...anyway, the response has been GREAT!

>

> So even if you will be unable to participate any further, if you feel

> inclined to join the movement, please go and sign your pin name and

> report the state from where you are from --here is the link to see the

> beginning message in the thread:

>

> What State do you live in?

> <http://lymebusters.proboards.com/index.cgi?board=rash & action=display & th\

> read=14456 & page=1>

>

> Hope things get better for you southernbuggirl and thanks to all who are

> wanting to get involved in bringing this subject to the forefront.

>

> Love

> Pdidit

>