HealingWell
Search Close Search
☰

What can WE do about Chronic Lyme?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/8/2012 7:52 AM (GMT 0)
Hey.

(My apologies in advance for a poorly written article. I am not feeling well, and it's time to lie back down. E-mail me directly if you don't want to comment. I am also on facebook, if you would like find me by taking a look at my username and draw your own conclusions about how to add me -- HINT HINT -- I am from Manchester, New Hampshire).

FYI, my name is Nick. I am 25. I've been sick with a Lyme diagnosis a few years ago, when I almost died due to late disseminated Lyme disease. Been to the ER a few times. Tried as many as 20 treatments over the past 10 years. My life now sucks and is defined by the disease, and blah blah blah yada yada yada... (I'd be happy to share more info when I get a chance to write it up).

I was just doing some brainstorming about Lyme and was reading a thread about yall's anger and other mixed feelings about Lyme. I was getting so angry, thinking about how the disease has affected me. Ruined my life. But today I watched a documentary on Netflix called (I think) "The Secret" which talks about, among other things, the affect that negativity has on success whether it be success and health or success under any other topic.

Anyway, as my migraine further sets in, I am beckoned to my point. I realized that my negativity is so deep but it does nothing for me and it does nothing for my disease or anyone else's. I was thinking that one thing we all seem to have in common is that we all have strong feelings on the subject, and we all feel that the general public does not take this disease seriously or at lease seriously enough. We all have our own unique story to tell, as well.

I started thinking about what we can do about it. What we can do with this negative energy, and what we might be able to do with awareness. I began wondering whether it would be possible to raise money for research by creating a book with the various submitted accounts of those of us with chronic lyme, with the proceeds going to research. We could pull together a couple hundred well-written accounts and experiences with the disease, and sell the book online to start the ball rolling on a research fund. Collection of the accounts would be a step in the right direction for research, I think, since perhaps it could be considered a form of clinical research.

I know what you're thinking--this type of thing costs money and takes a distribution skill-set. Well, it just so happens that I ran a successful internet company (with mail-order distribution) before I became too sick to run it (among other issues), and I have some money put aside that I could and would on the drop of a dime front in order to financially back such an endeavor. As long is it didn't cost more than $10,000-$20,000 to do such a thing, and there was a significant group of volunteers in addition to myself, I don't think that it would be a problem for me to front the money. If I am able to get some of the money back--great--but if not, I would consider it a donation to our cause.

Maybe I am crazy or delirious to think that this is a good idea--after all, without communal support it would not be possible. But I feel like there is a significant Lyme/co-infection community out there that would 1) provide written accounts for charitable purposes and 2) support the cause by purchasing a copy at a reasonable price if the proceeds were going toward a cure or treatment research. And I think people would read them. This disease is not going anywhere any time soon.

I wanted to bounce this idea off this community and also ask if there might be any better ideas for raising awareness. Like I said about that "The Secret" documentary, positivity needs to be the focus of our energy for the benefit of both our health and our sanity. I am sick and tired of Lyme, too, after almost 10 years of symptoms. I am sick of this disease not being taken seriously. I am sick of insurance companies not recognizing chronic lyme syndrome in order to save a couple bucks on treatment. I am sick of being sick of it. It's time to do something, but I can't do it alone. We can't just keep sitting around waiting for other people to fix this problem for us. Take a look at the political climate, for example. No one is going to help us--so maybe we need to help ourselves.

Anyone with me?
Posted 12/8/2012 5:51 PM (GMT 0)
Hi naso_nick,

I think most people are all for more awareness and that is a good idea. I would say certainly, hold on to your money for the meantime. See what other ideas people have for creating awareness. You could always start that idea and have a PO Box set up with people submitting their diaries, journals, personal accounts etc. Get a lawyer to write up a generic 1 pg agreement that allows you to utilize whatever they send to be used in a publication but that names would be omitted. etc. and that would prevent you from any liabilities. That shouldn't cost too much, really any lawyer could do it.

If you have netflix, I highly recommend you watching the documentary "Happy" it brought me to tears. I want to watch it again. A collaboration of this type would best be successful involving LLMD's, those who work at highly respected govt institutions (CDC, NIH etc), and patients. As I will be taking an Igenex test shortly I'm thinking of how my body can be most likely to test positive. I've heard for ladies there are certain times of the month that make your body more likely to have an accurate positive. Or maybe I should take a note from Jay-Z, take some strong abx/herbals and try to "bring em out, bring em' out" before I take the test. But I don't know if that would help/hurt yet.

http://www.cdc.gov/lyme/stats/chartstables/reportedcases_statelocality.html

Confirmed and probable cases of lyme over the years. Now I think the best thing to do would be to have the CDC redefine what "they" will determine as a positive Lyme diagnosis. Even Harvard disagrees with them on their numbers. From Igenex "The discrepancy stems from the fact that the CDC’s recommended test for Lyme uses far too narrow criteria for recognizing the illness. Its approved enzyme-linked immunosorbent assay (or ELISA) Lyme test has been shown to be only 65 percent accurate"

 

 

Posted 12/8/2012 6:26 PM (GMT 0)
Good example....so I'm almost Positive that it is required to report animal rabies cases to the CDC, not 100% positive but I believe so and they keep it on survellience. My dog tested positive for Lyme but I highly doubt that it is required to report this to the CDC as there is no information on the site for it but there is for rabies.... now granted rabies is well, rabies...But...no reason they shouldn't be surveying Lyme. It comes up I believe in a standard heartworm test.

I think it would be beneficial for people who have not had chronic lyme also.

Post Edited (opugirl) : 12/8/2012 12:05:28 PM (GMT-7)

Posted 12/14/2012 12:30 PM (GMT 0)
Sorry for my delay in response. Been busy and haven't been feeling so hot.

@WWJD20 - HealingWell.com User SUMMER3 just so happens to be an educational researcher (lymepie.blogspot.com). I've just started talking to her recently, and she is phenomenally well-written. Maybe she would want to get involved?

@OPUGIRL - Sorry for not responding to you sooner, as well. That's some really good advice, regarding a lawyer. Does anyone here know a lawyer that would do that for us pro-bono?

Well, it doesn't seem like there's enough support for putting together something like this, but it would be really awesome to be able to make and donate thousands of dollars to the cause.

I am so sick and tired of this disease. I want out.

To anyone interested in talking to be able forming a group and DOING something about this disease--whether that means getting up and making moves (for some of us) or making a stand from one's home computer--please don't give up. Click on my username and send me an email with the title "LYME" if you want to get involved!
Posted 12/18/2012 2:34 AM (GMT 0)
naso_nick,

I want in. I would like to share my story and help you write this thing. I think it's an absolute wonderful idea to try to channel your energy in a positive way through spreading awareness about this disease...though when dealing with something like this it's almost laughable when someone tells you to "think positive." However, I do believe there is a lot of truth to doing just that, and I am really struggling to master this. I have also seen the Secret a few years ago. The movie has tried to summarize kinesiology, and it does really work. After all, we are all made up of energy, and our energy has been affected by these critters. I also think our healing process can be shortened if we truly believe that it can.

I was just in Viet Nam when I was struck with this Chronic Lyme thing. Let me just say I am not loving it...AT ALL! With this being said, I would like to hear your experience, and I'm looking to connect with other people as well who are going through this. It's the absolutely hardest thing I've had to deal with...nightmare really. i sympathize with all of you. Yet I know we will come out of it...it's just going to take time, and a lot of bravery.

Anyway, naso_nick I can't find your email on your profile. I would like to further discuss your idea.
Posted 12/18/2012 3:36 PM (GMT 0)

naso_nick said...

I began wondering whether it would be possible to raise money for research by creating a book with the various submitted accounts of those of us with chronic lyme, with the proceeds going to research. We could pull together a couple hundred well-written accounts and experiences with the disease, and sell the book online to start the ball rolling on a research fund.

something similar, the documentary "Under our skin" was made just a few years ago. Not sure what the outcome was
http://www.youtube.com/watch?v=sxWgS0XLVqw
Posted 12/18/2012 4:45 PM (GMT 0)
My Dad saw that movie at an indy theater and now he is terrified of getting lyme. I haven't told my parents I'm sick b/c I don't want to worry them. But He is aware of it now and he wasn't before.
Posted 12/28/2012 4:57 PM (GMT 0)
opugirl, that is so bittersweet you don't want to tell your parents.

To the original post, I am SO with you! Is there a way to subscribe to posts so we can get notification of replies? My goal is to get done with Lyme so I can prevent chronic problems in others who've had a tick bite.
Posted 12/28/2012 5:57 PM (GMT 0)
Hi Prillo,
Yes, there is a way to get notification of replies to a post here! If you click on the blue tab that says "Post reply" above the "quick response" box, you will see that option below the window in which you post.

Or at the top of every thread (it sits right on the top of the first post), you will see "Previous thread" l "Next thread" then you will see the option to "Subscribe to this thread". That one works the best with my computer.
Posted 12/29/2012 12:46 AM (GMT 0)
Hi I am in England and my daughter had a positive Lyme test at age 6 or 7 cant remember now exacly but It was so mismanged, the wrong drugs given and now we have discovered after a nightmare of a ride that the short term antibiotics prescribed would not have crossed the blood brain barrier and as her test was from cs fluids that was obviously vital.
Have thought that I would like to write a book helping others as to our jouney so would be intereste if seeing if this would something for us

love
linda
Posted 12/29/2012 3:55 AM (GMT 0)
i would love to share my story too.  this is changed my life in a way that most cannot and will not accept.  i am so very exhausted with being accused of being lazy and/or crazy.  my body hurts so very bad and feel there is little hope to make it better.  i am quickly progressing with not only the pain but memory loss, vision loss, and the endless need to sleep.  i have lost my job and no longer able to drive far or take part in my past activities.  i have four teenagers and the lyme has completely taken over our lives.  i want awareness.  i want relief from the pain.  i would be happy to share my story!  as mentioned we each have a unique story however the overall focus is the dramatic change that it has made in our lives. 

take care my lyme partners!

Posted 12/29/2012 4:46 AM (GMT 0)
I can not read all of this,

but for educating, spreading awareness of this disease, done in an intelligent way
I am all for.

I am in the nightmare, and shocked I am still alive
I have been trying to figure what all is wrong with me, sick for years

I went from being a size 6 to a 3x I have inflamation so bad, My socks dont fit, and the swelling is in my feet ankels, to my face
I am scared to think what it is doing to my poor brain

or whatever happened to my brain

I have methlyation defects, my melancoytle stimulatin hormone low, low adernal reserve, low dhea, low

vit d, ( like a lot of us has) mycoplasma pnuemonia, some high,of heavy metals
and that is all my dr knows now. Money is almost all gone.


I fired my last md, cause she kept telling me to loose weight
take vitamin b 12, it will solve all your problems,.....

and I am writing a book myself, but I will share my story, this gets the word out sooner...

I am totally for this, let me know,
Posted 12/29/2012 10:34 AM (GMT 0)
Hello all! Sorry for the delay in response...I didn't realize/anticipate that there would be so much interest in the topic, and it seems that my HealingWell emails have been lost in my inbox. Needless to say, I will analyze and assess comments, and respond accordingly today. Thank you, everyone, for your support and contributions. -Nick
Posted 12/29/2012 11:28 AM (GMT 0)
Also, for those who asked (and want to discuss stuff further), I can be reached by clicking on the blue envelope under my name. -Nick


Nick I'm sorry but I had to take your email address out of your post - Admin says that this is not allowed because of the potential for harm. Every member can reach you through here just by clicking on the blue envelope under your name.

Post Edited By Moderator (Traveler) : 12/29/2012 9:25:41 AM (GMT-7)

Posted 12/29/2012 1:20 PM (GMT 0)
I did send you a email, but I also wanted to say, that we should video tape what Lyme is doing to us. Because we can tell people but until they see it with their own eyes, it doesn't makes it real. I mean I have had so many doctors tell me different things, if they won't fight for us, we have to fight for us. Each person has a story, and if we could find a cure all of us, it would save our life.
Posted 1/13/2013 4:18 AM (GMT 0)
Hey all. Sorry for such a late reply. I got sick a couple weeks ago and barely left my bed. I hope that this thread is not totally dead. It seems as if there is at least some interest in this, so would anyone like to discuss the matter further? I will post my two cents on how something like this will be organized once I know that this thread is still seeing activity.

The idea of receiving stories, editing them and processing them into a coherent book format is somewhat straightforward, but I believe that the infrastructure required to make the whole thing happen is a bit more challenging. Specifically, does anyone have any specific ideas as to how a project like the one I suggested might be organized? How many and what type of people with which skills might be required? Which skills do you bring to the table, and do you know anyone that might be able and willing to help? How, in step-by-step fashion, do you think a project of this magnitude might be executed?

Again, once I know that this thread is still alive and kicking, I will be sure to formulate my own plan and post it for everyone's input and dissection. In the meantime, if you would like, you can shoot me an email at the one listed in my profile (which the moderators will not let me list here, for some reason). If you do not have a membership to this forum yet, you can make one quickly and you can email me once logged in by clicking the email icon under my forum name on the left or at my profile page by clicking on my forum name to the left. Please make sure to bookmark this page first, as you may lose track of the page during the signup process.

I will be putting together a group email list if there is enough interest in the idea. We will use that to bounce ideas around and possibly to share stories and such. Please email me to join the email group.

Also, please respond to this forum with ideas/plans or email me! That should keep the thread alive and, in turn, keep fresh ideas and input coming through the pipeline. Everyone is welcome to join in!

Nick

Post Edited (naso_nick) : 1/12/2013 9:22:49 PM (GMT-7)

Posted 1/13/2013 8:18 AM (GMT 0)
Count me in too. If it were me organizing this, I'd use OneNote - it is like a notebook on steroids smilewinkgrin Microsoft Office includes OneNote in most of their versions of Office.

No, I don't work for Microsoft...just am a happy customer...

Anyway, with OneNote, I'd have one area for each person's story, and another area for general outlining of the material in the book.

And another area for basic info on Lyme/coinfections, including the following:

* a description of Lyme and coinfections, how these infections are transmitted

* a short list of symptoms for each infection (with references to longer symptom lists)

* maybe how diagnosed & treated (ILADS method, plus why IDSA's method is flawed)

* a bit about the controversy (IDSA vs. ILADS)

* reference links to other resources (books, websites, etc.) for more info about these infections

Just brainstorming "out loud," LOL! :-)
Posted 1/13/2013 1:32 PM (GMT 0)
Count me in too. I can help , In my opinion we need different people in different states. This way we show the world that Lyme is a nationwide issue. I know for me I kept being asked if I left the state of Illinois, because Lyme is not a issue here.




Wow how wrong these doctors are.

Let me know, what needs to be done , how I can help, I also am connected to quite a few people on fb, suffering through lyme, so do you have a general ideal of how many people story's you need?

Post Edited (Justme4508) : 1/13/2013 6:58:49 AM (GMT-7)

Posted 1/13/2013 3:49 PM (GMT 0)
Okay everyone,
I'm really sorry but this poster (Naso_Nick) failed to get prior permission from Admin for collecting information from this site (members info and things posted on this site) and wanting to put it together in a book and then sell that book. So this can't go any further until he gets that permission from Admin.

Sorry, but rules are rules and I have to follow them as well. This site contains intellectual information that is "owned" by the creator of the site (Admin) and so permission must be granted for someone to use it. Not only that, this poster is using this forum as a recruitment tool, that is also not allowed on this site any more than someone wanting to do research through us.

Please do not participate in this until further notice.
Posted 1/30/2013 2:58 AM (GMT 0)
I never said or intended to collect information from this website. But since clearly there is some confusion for at least 1 person in the audience here (Trav), I'll say this in addition to my email response to you: I am not suggesting that anyone take (i.e. copy-and-paste, or reworded) stories or any other content from this or any other website.

The point of the matter was to attempt to connect with people who would like to collaborate on a project, and who might consider contacting me, at which time we would take further the idea to get in touch with people who might want to help in any way or donate a story not under anyone's copyright protection but their own.

I haven't scoured the User Agreement, but I must assume that HealingWell.com does not OWN the actual life-story of everyone who posts on this website...so unless that is the case, I'd appreciate it if this matter could be put to rest. However, if I am incorrect and HealingWell.com does own my or anyone else's life-story now that I/we have posted a few times on this website, PLEASE be kind and let me know immediately.

Regardless, it appears that there is not enough interest to create such a project, as I have been very sparsely contacted. Oh well, maybe next time.

Nick
Posted 1/30/2013 2:54 PM (GMT 0)
Believe me, I have no confusion on this matter. You must still get permission from Admin to do this, as Admin has been abundantly clear to me. Please email him and just talk with him. He's a very nice person.
Posted 1/30/2013 10:13 PM (GMT 0)
Sure. Emailed, sir.

Nick
Posted 1/30/2013 10:24 PM (GMT 0)
Thank you.
Posted 1/31/2013 2:56 AM (GMT 0)
Hey Nick
Am also in NH and there are a few Lyme support groups here which you probably already know. There is a woman in our Laconia group who has already written a book. I can't speak for her but I wouldn't be surprised if she would want to help (she was a principal before Lyme). As this starts to take shape, I'd be willing to help too. I know a couple people who started out with e-books on Amazon before moving into print so that is an option too.

I think doing something positive is ALWAYS a good idea. The negativity can eat us alive and keep us from healing.

I also belief there are some free conference call services out there. So a call among some interested folks might be useful . . .
Posted 2/1/2013 3:01 PM (GMT 0)
I was also thinking that if the organization or research group that we would like any proceeds to go to was identified in advance, maybe they would work with us to put it together and maybe that would take the question of an individual profiting from the project out of the mix and folks could concentrate on the content end of the project. Just a thought . . .
✚ New Topic ✚ Reply
12