Topic: Please, We Need Simple, Easily Understood Links Posted Here For :
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
ILADS vs. IDSA , Lyme Symptoms, Co-infection Symptoms, and Diseases that LD may Imitate [or be a root cause of].
We are in the process of explaining to people who know very little about what Lyme Disease is, how folks can be affected, and/or misdiagnosed and so on.
TxCoord and I want to send them to LymeNet, and have easy to find, easy to understand info’ available here in one place. I have searched the ‘sticky notes/Lyme Library’ many times, and couldn’t find a topic due to info’ overload.
Many folk we have spoken with do not really know what Lyme Disease is, that it can go chronic and the many problems it can cause. And too often they’ve been fed the IDSA line of hard to catch, easy to cure, if they have heard about it.
The links need to be easy to read, not overly technical, and reasonably short [-not over a couple pages a piece].
Asking for replies here under this topic thread, because caring, but busy folk, who may come to read and learn, will have limited time, and some have limited energy, to read and absorb the information.
As I am unable to edit things well, and am somewhat technically challenged, rather than taking hours to explain, or have them try to scan thru pages and pages of information, I’d like something shorter, easy to find, easy to peruse, that we can send them too.
<<<<< LymeNet Family >>>>>, TxCoord and I want people to be able to understand about Lyme and co-infections. I recognize I have many limitations, and could really use helpful tho’ts and ideas on these matters. Thank you for any tho’ts and ideas you may share.
Moderators, if this would be better on the Medical Questions board please feel free to move this thread. So many times now we are finding people like we were, with no idea what may be making them ill and tired. I don’t want others to suffer as we have, if there is a way to stop it.
Jus’ Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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Bless your heart for wanting to educate others. Good work!
Suggestions.
All of the sites I've set up have detailed info that has been gleaned from medical studies and brought down to the average patient level to accommodate folks like me who can look at a page and go OH NO!!! TOO DEEP! Just give me the basics and none of that doctor talk.
They also share the easy stuff first, and then provide links to more information on the topics if folks want more, some deep stuff for the brains out there who can follow the publications.
This site is possibly the easiest to read for beginners.
All of the sites have a "Tick Borne Diseases" page. Check this out for an example. It has easy-to-read basics that include symptoms, diagnosis and treatments for Lyme and all of the TBD's.
I feel really, really uncomfortable recommending my own sites here, what a toad I am puff puff, but truth is I don't get much chance to "surf" around to check out other sites, and I already know what is on my own sites.
I can also assure you and others that nowhere do I ask for donations for the sites or our groups or me, (other than situations like when Dr. J needs some $ for his kids which then do not go to me at all, they only go his way).
Nor do I allow advertisements to be posted that can make a site confusing, or receive any money if you click on links and such.
My point- all of the sites were developed to be as patient and general public friendly as possible, even allowing for eye/brain problems people can have with Lyme. They aren't pretty, but they mean well. HA!
Heck, the stuff is so easy to read even the IDSA can understand it!
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
[ 08-13-2013, 02:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
TC, no need to apologize for your outstanding work and all that you give to this community! I consider you a national treasure!
I am currently looking for a site for a very large tincup or toad monument...or perhaps, a toad in a tincup, or a toad drinking out of one?
Oh, and a closet nearby honoring Keebler and her fairy costume, I think?
And Silverwolf and Txcoord can be docents at the site...
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, Tincup's links are excellent.
Robin, that "closet and fairy costume" just caught my eye. Funny. No fairy costume but with it being "lawn noise day" on the property my closet-turned-cozy-den will help. I should have put a bed in here, though. Even the high back chair and foot rest don't quite suffice.
posted
Ok, then, next to the giant tincup will be a model of a Lyme-friendly den designed by you...
Posts: 13116 | From San Francisco | Registered: May 2006
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Silverwolf
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Member # 9196
posted
Hi there <<<<< Tincup, Keebler, and Robin123 >>>>>,
Thank you all so much for the links help and comments!!!
A number of times while trying to explain Lyme and Co-infections,and the various issues associated, I'm sure the listeners *eyes are glazing over.
I know *mine do when i have gotten into to technical of a read. My brain doesn't retain what i want it to, or I am spouting strange sounding words...and the average layperson doesn't quite get it.
Borellia, Bartonella, Babseosis, Neuro-borelliosis, Seronegative, Encephilopathy ...please do not check mah spellin'!
"Silverwolf hon' what's your name?... Remember it starts w/ an 'S'..."
"Uh...my name, uhm ,I used to know it honest... I think it ran away w/ my brain and basket."
I say this sorta tongue in cheek, because people look at me,and TxC' too, And ask how I remember all that. They don't know yet, that I frequently get words/phrases confused,such as Air Conditioner and Microwave.
Or that I run into walls,or trip on tiny bits of lint [well I tripped on something any how]. So I say all this to say ---Thank You Again for the helpful links---!!!
I need to look the links over too, and we'll start sending our new friends here to read them. We are hoping that folks will be helped, and at least be able to understand a bit more about the Lyme Disease situation as well.
Hmmm, 'Wolfi and TxC' docents...that might be fun...
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
What we need is something fun to walk through and explain all this to people - I think we need a Lyme and Co Land theme park.
Giant tincup at the entrance, Lyme-cozy-den right next to it, and then...
you are now wandering this way and that way on Spirochetal Wavy Lane, look through the atomic force microscope at all the little ketes,
watch this video of their burrowing prowess, set off the giant domino cascade of inflammational processes here,
here's your 30-foot-tall list of 27 reasons you might not test positive, go here or here or here or here or here to learn about all the various treatment possibilities,
and lookie over here, more funny names like babs and bart and ehrl and their walk-through exhibits -
And over here is what we do for all the animals, and for you! To stay safe! With take-home bags of tester samples of essential oils, etc.
Yes, we did have the gigantic outdoor bands Outside Lands concert in GG Park here this past weekend and there was a lot of pot in the air...
Posts: 13116 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Now, Now <<<<< Robin >>>>>,
Musn't has any pot in the air, cleanin' toilets on the ground is hard enough LOL!!!
The folk who we're invitin' here, are quite wonderful, and also cornservative[I do get quite corndiffused at times] like this here li'l Wolfi-me... tho' ya wouldna' believe it to see my make-up today!!!
Going to have some fun, at Church, tonight have an all ages VBS,and we're gettin' in the spirit of the Theme ... S-o-n West Round-Up... Yee- Haw!!!
I'll be a good kid,and try not to get run over,or run into any walls while avoiding horses,coyotes or outlaws... from mah little chair.
As to LymeNet info' links, I am really excited to share these links,for folks to get a better understanding[unders't'anding has a 't' in it.]about LD, Babs, Bart-n-Ella, Ehrl' and all them other varmints too!!!
Can ya tell I don't get out much...
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Lymetoo that video was very, very good. That is something we can attach to an e-mail for folks that will make it simple to understand as far as motivation to NOT treat is concerned.
Wacky tobacky? No thanks, the 60's were good to me!
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Husband was first misdiagnosed with ALS for 2 years.
She rebutts all the myths very well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To share with other "as motivation to NOT treat is concerned"?
Of course, if one is in a panic (understandable), too sick, too tired, too broke to access care, sharing this may not be the right time. However, for some, this sober reminder of the importance can be eye opening and prompt action, however one might be able to do that.
To honor those whose lives have been cut short by tick-borne disease:
Success & Progress posts -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Everyone appreciates simplicity in learning. However, because lyme & tick-borne infections (and all that goes with that) is tremendously complex, IMO, the not so simple but clear advice is:
It is extremely complex. It can be very bad. Get expert medical guidance.
While patient education is an emense task, the first step is to find expert mecical guidance.
Expert mecical guidance = an ILADS "educated" lyme literate doctor who will offer full clinical assessment and, if a tick-borne infection is diagnosed, an individualized treatment plan that will be combination treatment with rotations along the way.
Start there. If at all possible.
And, if that is not possible, there are still other ways to approach. Don't give up or dimiss. There is always a way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
"as motivation to NOT treat is concerned" What I meant Keebler is that the medical/pharm community don't want to treat because it doesn't pay enough. Until a "cure" is found by one of them, there is not "motivation" for that community to treat.
Lymetoo, tried watching the other video and 'puter froze. Will try again later. Thanks though!
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say in first post:
"We are in the process of explaining to people who know very little about what Lyme Disease is, how folks can be affected, and/or misdiagnosed and so on." (end quote)
With your last post, then, I'm a bit confused, sad to say (a frequent state inside my brain).
Oh, I thought you had some people who didn't want to (or couldn't) fully address this for themselves or a family member because it's easier to believe the IDSA line that GPs generally pass along.
So, seems like you are making a collection but not to send to real person right now?
If trying to MOTIVATE - by making a set for the collective anti-lyme medical / pharmacy industry groups, the lyme advocacy organizations would surely have some kind of advice and are likely giving that some thought and planning, too.
You might connect with them so you don't have to reinvent the wheel.
I can't fully explain my questions but am done with suggestions so no need to spend any energy trying to re-explain. It's just so much to do all this - for any of us.
I sure hope if you do have real people right now they will see it's just too complex to tackle alone (and if with a GP who is lyme-ignorant, that is alone) so they can find the best, correct, assessment & help possible, for their individual bodies. -
[ 08-15-2013, 04:35 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, make sure which one of us (Silver or TxCoord) you are referencing. Even though we think alike (happens in married couples ya know!) we are separate entities here on the board.
I was the one referring to the "motivation" and that the video that Lymetoo first posted spoke of money being the motivation of the med/pharm community not pursuing LD and Co-infections. It's because there isn't any money in it that they don't have motivation.
What we are trying to do is get some easy to understand, short, info/links for friends of ours who are not familiar with the disease. The video from Lymetoo is a good start.
Even people who don't suffer from LD et.al. have short attention spans and Silver and I do not want to overload them with links and pages of info, while good, that would cause them to just glance at them at best or ignore them at worst.
We just want to give folks a short "something" so they understand why Silver is sick when she looks so good (heard that again just the other night).
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, so they understand others who deal with this. Thanks for clarifying the audience.
That part is certainly rough. A friend of mine in a wheelchair even has had several comments like: "well, you look so good, now . . . just why do you need the wheelchair, then?" with the question not being so much a question as an edict.
It also has to do with how we humans think in pictures more than in verbal or written information. And our brains can be fooled if we rely simply on a "picture" of a person with any degree of inner delight that even shines through when feeling unwell.
That humans tend to rely too much on what they see (or THINK they see) can be a real obstacle in understanding. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Now it's me Silverwolfi here,
Hello to, <<<<< Each Replier and all LymeNet Family >>>>>,
First off <<<<< Keebler >>>>>, Please don't delete any of your replies here, it is easy for most of us to get brain confusion.
[ edit in, Sorry, Keebler, I cannot type quickly enough... and TxC' explainsit pretty well.]
I am hopeful,that if we can get some of the folk we are becoming friends with to actually come and visit LymeNet, the various links and so on,will help them understand what Lyme sufferers go thru.
We do get confused at times, we get really weary,we don't always understand things ,are in pain,or having headaches, sometimes tho' we might 'look good' we aren't feeling very well.
The not feeling well,weariness is long term for many of us w/ chronic Lyme. And for me yes,it is important to re-explain.
We are meeting people,some of whom have tho't, that *** 'Lyme...was mostly wiped out when the Mountain men died out'.
Or,that folks that live a mountain man life style might get Lyme disease etc, but most city folk aren't in danger. ***Someone, recently stated something similar to me.
Some have 'Fibromyalgia' or know someone who does...and it's often really Lyme Disease and/or co-infections. I want them to have a chance to know the truth,and to know why it is so hard to get treatment in far to many cases [i.e. ILADs vs. IDSA].
We are speaking to real, people,who are interested, but have limited time available to visit,and go thru information. I wanted to make it as easy as possible.
I cannot fully explain all the problems, but the links here, can certainly help.
Many times I've tried to check LymenNet info' in the sticky note marker sections. And I have ended up finding all sorts of things but not what I was looking for.
To often, I cannot even see what is right in front of me, and my hearing is far worse than my eyes. It is my failing from Lyme Disease and co-infections,but it gets frustrating.
I don't want someone else who comes here to learn, and may have Lyme or other Co-infections to have to wade thru the huge amounts of info'.
Some folk,TxCoord will e-mail links to,but hopefully some will come here. If they are better at reading and comprehending, than I am. Lymenet can give them further info'.
We have many wonderful researchers, and I appreciate each one, and the ones who are helping us here under this topic as well.
I cannot say Thank You enough, to the Researchers,to the Moderators and to everyone who comes here, and asks[if we don't ask,how do we learn the answers] or answers questions!!!
Hope this clears up any confusion... because each of y'all make a difference in my life, and in TxCoords as well.
Thanks again for the links,videos and helps... I need to find out if 'Under Our Skin' is still available for free on HULU... that would be a help as well [when folk have the time to watch it].
Just Silverwolfi here
\
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Me again, <<<<< Keebler >>>>>,
I so get that, about...'well why do you still need a wheelchair then? '. People wonder why I use a cane,and why TxCoord,uses a wheelchair on again off again.
We get... ' Well, TxC' I tho't your surgeries fixed all that...'. Or 'Wolfi, you had all those injections,why aren't you better...?' etc.
ANd I have family,who don't quite get it, they don't understand why TxC' and I don't go help my elderly relative. I wish I was able too,but I cannot ,so I do what I can,and try to keep going!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA! Silverwolf!
You said you don't get out much, and I had to laugh!
Sometimes I'll be reading a really deep scientific article trying to comprehend it and try to break it down to "people level". Once I do it is often something certain people may want to see and others won't give a toot about. Anyhow....
I write up my intro with the clips, with the promise that the person getting it won't tell anyone that I am sitting here on a Saturday night, all alone, studying things like testing mediums, or bat droppings, or other fairly boring topics for many.
After all, I want people to at least THINK I get around and have a life. HA!
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Tincup, and other reader/repliers >>>>>,
Tincup, I am glad you are willing to take the time and do research!
You mention bat droppings,and I wonder,do bats get ticks like other birds? I know different subject for a different thread. I get easily distracted !!!
Honestly tho' I really don't get out much compared to most folks TxCoord and I know, altho' we were at VBS meetings several times this week. That was quite entertaining, and enjoyable. I don't think I've been out that much since, like uhm 1996.
I am paying for it,in leg/ankle pain right now, but it was nice to meet more folks. And perhaps I can help some of them to understand more about the Lyme Disease and Co's I fight.
Jus' That Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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There was a story out of Australia of a tree that fell down, with all the bats on it. I'm not sure if they had ticks on them before the tree fell down or if they were exposed on the ground.
They were found on the ground, and taken to a hospital! And no, I am not bats!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
We finally got to watch that 2nd video Lymetoo. It is amazing that there are at least 100 variations of the bug but they only test for 1. Hmmmm. And in the world over 300. Hmmmm.
Thanks, that's is also a great start point for someone unfamiliar with the disease.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi Y'all <<<<< LymeNet Family, andTBD Researchers >>>>>,
Relaxing,reading and resting this AM, so hopefully I can go to a special evening Bible study tonight.
So excited about these posted links!!! Tincup, that first one 'American Lyme' is fantastic, I even spotted one of my current rashes in the pics'. And the whole site is really informative!!!
Robin, thanks for the info on Bats, there where a lot of the little mammal critters,in Oregon,where I was born and we usually spent a part of each summer.
Bats really are interesting critters,sadly some in Oregon, carry rabies. Makes me wonder even more about vector born illnesses.
A healthy bat colony can actually be a good thing, they eat a lot of insects,including biting flying types!!!
Lymetoo, both of those videos,were super informative!!!
These various links are a huge, huge, help!!! Thanks again so much for the info'!!!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lyme Family,and Lyme Researchers >>>>>,
We started w/ sending out some link info' to a friend,who is praying for us. They were wanting more info' about Lyme and Co's and were unaware of much of the issues.
So we should find out soon if it is helpful to them, I think it will be!!! Thanks again for the links, videos and such!
Jus'Silverwolfi here!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Silverwolf,
I think this is one of the best links for basic, easy-to-understand info:
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Dekrator >>>>>,
Thanks for the link info', TxCoord and I are still checking the various links, and all are welcome, the easier to understand,and read,or watch the better!
As we get to know more folks, and try to explain our medical issues to those who ask, we are finding the various links helpful.
I prolly said this above in another reply,but one of the links,had some rash photo's, and I found a recent skin rash that I've been dealing with shown in the photo's. We're educating ourselves more as we go along!
The links and info' are greatly appreciated!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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