Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"There is a place for everyone in the big picture.
To turn your back on any one person, for whatever reason, is to run the risk of
losing the central piece of your jigsaw puzzle."
- Johnna Howell
Lyme disease is an enormous puzzle. We need to work together...to share ideas...to share research.
Our doctors do NOT have all the answers.
They don't have TIME to keep up with all the "latest" information AND see patients AND have a life of their own. It is not humanly possible.
And sometimes "specialists" (all of them) miss a part of the big puzzle. They may have one piece, but not all of the pieces.
If you like to read, the paperback book (written by a ER doctor) called Hippocrates Secret is eye-opening.
It is a breath of fresh air...honesty...truths...that are very hard to accept.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I think most of us understand this but it wonderful that you have put it into such clear words for everyone.
And this is the main reason why so many of us have asked if you can present your information in a manner that we all can understand or if you could simply include a summary of your post in plain text, so that we can all learn together.
It's very frustrating for the majority of members who cannot make any sense out of what you post, not to mention the many of us who have severe cognitive issues from the illness.
What we are all asking for is a chance to "work together" but currently feel excluded from the process when information is posted in a manner that cannot be understood.
I hope you will think about a way to present your information to make it more reader friendly for everyone, so that anyone who wants to learn more, and I think that is the majority of the active members here, do not feel excluded from the puzzle.
No one would disagree with the quote you have used:
""There is a place for everyone in the big picture. To turn your back on any one person, for whatever reason, is to run the risk of losing the central piece of your jigsaw puzzle."
but if the information you post excludes the majority of the active members here because it is presented in such a technical manner that they cannot understand it, then in effect they have no place in the big picture. Thus, it creates an feeling that we are not working together and as thou one has turned their back on them.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Agree with you Marnie.
IMO, Marnie is often seeking input rather than offering a conclusion. Many of her posts are a way of "thinking out loud". There is no summary or conclusion available yet.
As was stated previously, a certain amount of basic knowledge is needed to participate. It takes work and a desire to spend the time and energy looking things up and doing some of your own research in order to participate. Also, some people are too brain fogged to fully participate and that is terrible and sad but it is a fact.
Just like in the non-internet world, some of us love research, others have a focus on other things and would rather spend their energy on things such as answering questions in the seeking doctors section or offering emotional support etc...
This website is used for many things. Emotional support, learning the basics of our illnesses, asking for the experience of others, finding things that work for us, postulating and discussing all kinds of theories from political to medical.
There is a place for everyone but not everyone has the same interests or abilities and that should be OK.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Not every post is of interest to everyone. Not every post can be understood by everyone in the MEDICAL FORUM.
Exception perhaps...Tincup's posts! Everyone is interested in her posts. Her humor is like a breath of fresh air.
Cognitive issues do indeed play a part in this disease, but not for EVERY lyme patient!
And even those with cognitive issues have some "good days" and some "bad days".
There are days or times when lyme patients maybe more receptive to learning.
My sister has severe OA and RA from lyme, but she does NOT suffer ANY "neuro" impairment from lyme.
Perhaps because of very high doses of Prozac? I don't know, but it is curious.
We all choose which posts to read. Which ones interest us. Which ones we feel we can understand and learn from.
Let me get this right, abxnomore.
You said:
"if the information you post excludes the majority of the active members here because it is presented in such a technical manner that they cannot understand it, then in effect they have no place in the big picture."
So you are saying ***my posts***
presented in a technical manner which cannot be understood by the majority of the active members here
***have no place in the big picture.***
So you would like me to stop posting technical-medical information that people who
are interested can read and
***interpret in their own way***?
Learning is "mind exercise". Like the nurse who makes you get out of bed after surgery and it hurts to do so, but is so important to your recovery...I'm pushing for you all to TRY to keep your mind active, to think, to learn about this disease, this spirochete, our bodies.
Your comment, Abxnomore upsets me:
..."and as thou one has turned their back on them"?
Do you understand every Bible verse that your minister/rabi recites?
I sure don't, but I do not feel he is turning his back to me!
I am NOT turning my back on lyme patients!
If my posts are too technical for persons...SOB = scroll on by (for newbies).
I will continue to warn people if a post is going to get very medical-technical.
Until the moderators/censors on this board -jointly agree with your point of view and forbid me to participate on lymenet.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Your posts are welcome and appreciated on Lymenet. I do wish I understood them better, but that is beside the point, they are still welcome and appreciated.
What would help me is if you said, "Hey, six, you are trying to learn here that coconut oil might help with alzheimers", then I would have a context before I read the technical stuff so that I might understand it better. But, again, it's your call, and you are welcome to your own style.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Gotcha.
;-)
P.S. I think virgin coconut oil might help...a LOT...but slowly...very slowly.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
massman
Unregistered
posted
Nobody nobody nobody wants you chucked !
Some have repeatedly asked you to post so we can better understand what is being said. That is not looking for a ban, is it ?
Starting off confused and then having to research a large number of terms may make it more confusing. Information overload.
Who here truly understands what you post ? All the complexities ? I don't think anybody does. That is why we ask for the simplification.
IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yup, coconut oil is great! I've been using it for over a decade now (Ack! close to two decades now!!! Yikes, time flies!). Maybe that was one piece of the puzzle that enabled me to get better relatively fast for how sick I was??? Who knows? Nonetheless, I also got very sick and coconut oil had been part of my diet for years at that point. But that's off topic .... sorry (it was just an example in my original post on this thread )
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
When researching VCO on your own...take note if the fatty acids in various experiments were given IV or
If Bb is robbing us of glucose to fuel our infected defense cells and choking off oxygen via its biofilm...those defense cells maybe defense-less.
The thought with AD is that the brain cells are being starved of glucose.
Our brain needs a LOT of glucose...ongoing, but
WE
can use ketones to substitute.
Keep in mind ...the pediatrician who is giving her husband VCO - 3 T. per day - divided dosages is
giving him nothing else - medication wise.
To my knowledge.
Artists out there:
Draw a circle. This represents a defense cell. Put red "S" (s) in it. Those represent Bb(s). Now color in around the "S"(s) with a yellow crayon. That represents the biofilm.
Now...using a blue crayon, put some more dots inside the circle...away from the Bb's.
Those represent the powerhouses of our cells = the mitochondria.
If Bb is gobbling up the glucose and taking SOME of the available oxygen (or if the oxygen is impacting the biofilm)
then the blue powerhouses of the defense cells are being deprived of enough oxygen or glucose to work properly.
Which might put our defense cells at an extreme disadvantage.
It is called mitochondrial dysfunction.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Abxnomore / Roz,
it's all been said in other threads. So why keep slinging the criticism? A positive thread was just started. Why hit it for an instant derail?
Not helpful. Similarly, as you stated above: " I hope you will think about a way to present your information that is . . . "
Perhaps - for yourself - that sentence might be finished: non-assaultive, non-combative. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yep. It gives you a green glow.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Marnie,
"If Bb is gobbling up the glucose," that can also be why porphyria can be such a problem. Glucose is required to help keep excess numbers of porphyrins from killing cells. The less glucose, the higher the porphyrins. Not good.
For anyone needing more detail about the range of porphyrias:
See what the body does in the first link and the danger?
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Marnie,
Good link. The deficiency or lack of specific enzymes relating to specific porphyrias has always been a puzzle to me - in how to correct it all. That link you just posted explains some of those enzyme functions.
(Or it will explain when I try to read it all later). Thanks for posting that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hey it was a good think to ask for...
Looks like it is not something that She wants to change and if do not understand it we should just Move on By..
Ok Got it..
Too bad that will include I guess 90 percent of the readers. Correct me if I am wrong.
So who do you feel your audience is and why do you post them if there is such a small audience and so many are excluded..
Just curious now at this point..??
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Curious?
We're talking about how lyme works, now. Some good book and article links above - to help explain the curious complexities of Bb. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Marnie,
I could not find "Hippocrates' Secret." Would this be it?:
"Hippocrates' Shadow: Secrets from the House of Medicine" - by David H Newman, M.D.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
A few in this audience are looking for a safe, effective, cost-friendly cure for the masses.
A few in the audience want to know what this pathogen does because the cure lies in understanding...in knowledge which is very very current.
Especially since we now know Bb's complete genetic code...which we did not know years ago.
We know all the enzymes it uses, the pathways it takes (MANY!)
If we can disrupt a pathway, an enzyme...we may figure out a cure for you, springshowers.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Keebler..yes...sorry. That's it. I edited my previous posts about that book which IS titled:
Hippocrates' Shadow.
It's just that he does expose many medical "secrets".
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
massman
Unregistered
posted
I really like the part where I ask specific questions and those questions are ignored.
posted
Thanks for giving the artist's representation of the Bb, biofilm, and mitochondria--helped me visualize it.
Posts: 648 | From northeast | Registered: Feb 2009
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I liked this site but there are many. It shows how the electrolytes work within the body. I always do better if you draw me a picture. No I'm not blonde.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Marnie, thank you for the wealth of information you have gone to great lengths to make available to us.
It has been quite helpful to my own recovery, which has lasted 5 years (next week).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Amazing how words and thoughts can be twisted to continually get off message and not listen to what is really being said or asked.
What ever happened to objectivity or plain old fashioned listening.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Abxnomore: Amazing how words and thoughts can be twisted to continually get off message and not listen to what is really being said or asked.
What ever happened to objectivity or plain old fashioned listening.
Its part Lyme and some other things:)
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Well put Tree
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Agree with you, but with a post entitled "working together here" how does the entire post immediately get misunderstood, hijacked and turned into another agenda that totally distorts the intend of the response.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
How about a simple summary? It's not so much the concept of what you are writing but the manner in which it is written that makes it hard for anyone to try figure it out.
Why is a simple summary of the post too much to ask for? Clearly you have a big interest in helping others.
Then, why deny the repeated requests for some consideration to make your posts more reader friendly? I think that is how we all "work together here".
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
massman
Unregistered
posted
Abx - your problem is you are too straightforward .
IME that upsets some people and may be perceived as an attack.
And dang it, you write very clearly and concisely. I myself am jealous. You betcha !
Guess if you are not doing this: then you must be doing this:
Eh ?
Dis claimer: Satire above
Boy these Graemlins are...WAY COOOOOOOL
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
I do wish I understood them better, but that is beside the point, they are still welcome and appreciated.![[woohoo]](graemlins/woohoo.gif)
![[Roll Eyes]](rolleyes.gif)
![[confused]](graemlins/confused.gif)
![[Eek!]](eek.gif)
![[Mad]](mad.gif)
![[kiss]](graemlins/kissing.gif)
![[puke]](graemlins/puke.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic