Topic: Middle man- waiting for you to show the way
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Earlier this year the groups in our state came together.. and with help from the LDA and the ILADS guidelines publisher... we were able to mail out over 800 copies of the ILADS guidelines to random doctors across the state. We got addresses from the web and other sources.
We left out cosmetic surgery docs and other less involved fields of medicine due to cost and time... but we hit all the neuro's, rheum, general, internal meds, and childrens docs, etc that we could.
Once they were mailed out there was no further thought on the topic on my part.. and I went back to war.
BUT..
For the past couple of months I have noticed a difference of some sort in patients when they are requesting help from me. They talk to me and .. for example.. when I ask if they were tested .. they reply "oh yes, my doctor did a Western Blot". No ELISA.. JUST a Western Blot from the git-go. Hmmmmmmm. VERY unusual for this area.
When I ask if they are being treated at this time they say, "yes.. they have me on XXX meds for now." Hmmmmmmmmm. SUPER unusual for this area.
Finally, after being rather surprised they are getting help and seem to have learned this from their doctor (HUH?)... I ask who their doctor is.. and I learn it is someone I've never heard of. Hmmmmmmm.
Unfortunately I wasn't smart enough to write this info down at the time.. basically because I thought it was simply a one time "fluke"... and not really important.
Now I have come to the conclusion.. after speaking with the other group leaders here who are noticing the same thing going on...
That perhaps our efforts and energy spent sending out the ILADS guidelines did some good?
I am as guilty as sin.. and just NOW realizing it... on limiting my focus on either the bad ducks who cause us so much misery... or the LLMD's who are saving lives.
I've actually not had time to stop and think about the "middle man".. the thousand of other doctors who are out there waiting for guidence and more information... who are NOT caught up in this war... and who might appreciate a "free copy" of the ONLY Lyme guidelines that are currently in effect (ILADS)... because the others (IDSA) HAVE been officially withdrawn.
Now as my daddy would say.. "Don't break your arm patting yourself on the back"... but hey..
Could this project be working MUCH better than we originally thought it might?
What I am trying to say is.. this MAY be a way to get ALL of us more help.. and more LLMD's... and less pressure on our LLMD's. I mean if EVERYBODY is doing it.. how can the dope ducks go after everyone?
I don't know what is happening.. but I do know something is going on here.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
That is a such a fantastic idea...........! Amazing results!
N/
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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AliG
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Member # 9734
posted
Great Job Tincup!!
Thanks for your efforts, you must feel wonderful for having made such a difference!
It's a great feeling when you work really hard at something and you actually make an impact!
Bravo! =D>
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
For those who would like to try this idea... I am typing out the following info to use as a sample for your project.
This can be a rainy day project... and/or an ongoing one. Kids LOVE to stuff envelopes, for a while anyhow. I paid a couple of kids to stuff over 100 envelopes. It cost me 2 ice cream cones.. well, 3 if you count mine!
Keep in mind.. volunteers hand addressed all envelopes (large yellow minilla ones).
For a return address we did NOT mention Lyme disease or a name.. and only provided an address. It basically looked like documents ... rather than having a group name on it... or looking like an advertisement that might get tossed before it was opened.
We got a deal for postage with a permit place to reduce costs. The estimated cost to send a one page letter, a copy of the guidelines and an additional fact sheet was approximately $1.00 per envelope.
We got free copying from friendly neighborhood sources.
PLEASE... Do NOT think you must do 800 copies. If you want to cover only your county doctors.. or your city docs.. or even one hospital.. EVERY little bit helps! Maybe start with childrens doctors?
We kept a list of all names and addresses... so if we could afford to do more later.. we wouldn't duplicate... and so if a patient had a future problem with a duck who insisted on still using the OLD guidelines.... we would have a record of them getting the new information.... so they couldn't play "dumb" and get away with it.
We sent one to EACH hospital administrator and another to each Emergency Room at the hospitals. We stuck a sticky note on them and asked they be copied and given to each doctor on staff.
Sample copy of what our single letter said..
TIPS- VERY short.. to the point.. and factual. Typed to be ONE page only. We made a nice letter head too... official looking. I would NOT give them YOUR name or contact information if they have questions. PLEASE.. even though YOU know a bunch of good stuff... send them to the professional organizations for help... as we did.
IMPORTANT- If you get this out BEFORE any new IDSA guidelines might hit the marketplace.. great. If not.. be sure to change the wording in the letter.. and the date.
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Letterhead
Date
Dear Doctor,
Enclosed is a copy of the International Lyme and Associated Disease Society (ILADS) 'Evidence-based Guidelines for the Management of Lyme Disease (2004)'. Also enclosed is a copy of 'Lyme Disease in __________ (your state)- An Overview'. We send this important medical information as an update for the diagnosis and treatment of Lyme disease, chronic Lyme disease and other tick borne illnesses.
The outdated Infectious Disease Society of America Guidelines has been offically withdrawn from the National Guidelines Clearinghouse, along with 700 other outdated treatment protocols. The National Guidelines Clearing House was created by the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans.)
Additional information concerning tick-borne diseases which have been detected in increasing numbers in ______________ (your state) (chronic Lyme disease, Ehrlichiosis, Babesiosis, Bartonella, Rocky Mountain Spotted Fever, STARI, Tularemia, Leptospirosis) can be found on the ILADS web site at www.ILADS.org. If you would like further information please contact the national Lyme Disease Association's toll free number 888-366-6611, or go to their web site at www.lymediseaseassociation.org.
Sincerely,
Your name Lyme Disease Education and Support Groups of _________ (your state) Your address
Enclosures as noted above
Note: Permission was obtained from the publisher, Future Drugs, LTD for us to copy the enclosed document and provide it to you for your professional use.
We gratefully acknowledge the national Lyme Disease Association for their financial assistance in the distribution of these materials.
posted
Brilliant! I mean totally, awesomely brilliant.
I've just emailed all the support group leaders that I know in my state so maybe we can start the same ball rolling.
How difficult was the process? What kind of help did LDA and ILADS offer? Cost?
Thanks so much Tincup!
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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I have often wondered if something like that would have an impact. Are you able to provide some of the specifics of the project? For instance - who paid for mailing costs, were ILADS guidelines provided free of charge and if not who paid for them?
If ILADS and LDA covered the costs, do you have a sense that if we tried to organize something like that in other states, that they would extend the offer? It would certainly be a lot more expensive if we tried to get it going in many other states.
Thanks.
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
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AliG
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Member # 9734
posted
Could you tell me where you've mailed already?
If I were to duplicate your efforts, it might look odd to the Drs receiving them, not to mention it being a waste of time & money.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Tincup, I am so happy that you are hearing of some improvement due to this effort..
I had heard rumors about it and thought it was a fantastic brainstorm of an idea.
Locally, we have sent Lyme times(Children's Issues) to all of the local pediatricians..
Some may also need to do a one on one when possible..I have done this and our local Dr seems willing to listen..He has a long way to go however.
inch by inch toward a cure...lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
One more quick question, now that I saw your post with the letter. It mentioned that permission was obtained to copy the guidelines. How do we go about doing that or is the permission you obtained global enough to include any more people who would like to do this?
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
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northstar
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Member # 7911
posted
Just 2 quick questions, if you have a chance:
1. Return address: "For a return address we did NOT mention Lyme disease or a name.. and only provided an address. "
Did you use personal address, or address for your lyme groups, or get a special p,.o. box, or .......?
2. You stated: "Permission was obtained from the publisher, Future Drugs, LTD for us to copy the enclosed document and provide it to you for your professional use."
Who is Future Drugs, and would you have a contact number for them?
Thank you so much.....this is just such a great idea you have started !
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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northstar
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Member # 7911
posted
Another quick question:
In this case, how are you defining "chronic" lyme? This has always baffled me, because it is used in so many different ways.
1. Length of time from bite/whatever/first symptom: undiagnosed/misdiagnosed
2. Non responding to short term abx, whether quick or delayed treatment from #1.
3. Relapse (i.e. symptoms come back) from abx therapy
4. All of above
5. All of above + anything else I cant think of
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry all.. I am moving at minus 10 miles per hour today after my train trip to Dr. Jones hearing.. and it seems you all are moving at 90 plus miles per hour. HA!
I actually didn't know you all were here... much less replying to the post already. And I didn't have the info I am sharing here typed or on my computer.. so I am doing my slow 'hunt and peck' to type it from a hard document for your use. So please excuse the delay and my writing on and on as if you weren't even here! ````````````````````````````````````
Now.. FIRST off.. I MUST share this...
I am NOT the one who did all the work on this. As a matter of fact.. the group leaders in Maryland discussed it and by the time we had our ducks in a row and were ready to do the physical work... I was in Florida fixing up my home that was severly damaged by the hurricanes. I helped by phone and the folks here were kind enough to do the rest of the physical work involved. THEY deserve the credit... and I will share your kind comments with them.
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To answer some questions..
I had NO money to do a project this big. But the groups here worked together.. and it happened.
The Lyme Disease Association was wonderful. I contacted them with the idea.. and they offered to help with the main expenses. Can they do it for ALL states and groups? I do not know... and I didn't ask back then. I just feel blessed we were able to do this.. and I know without them it would not have happened.
Personally I don't want to ask them AGAIN for more help... not this year anyhow.... as I feel their help was already above and beyond generous. But it wouldn't hurt to approach them to see if this is at all possible?
But first think of other ways to get the money. If you belong to a group.. are there funds for something like this?
Do you have an office.. and can you donate envelopes to help out? Do you have access to a free copy machine? Even local business in your town may let you make a few copies at no charge if you ask... or do multiple copies and get a lower rate per copy.
As for the copies of the ILADS guidelines. They run $10.00 each I believe for the original.
KNOWING we couldn't afford that.. one of our hard working members took it upon himself to contact the publishers directly and make an inquiry. We were lucky and got permission for X numbers of copies we could make to mail out.. with the provision we specified that donation in the mail out... which we gladly did.
From what I understand.. and DO check this out.. ONE copy from your guidelines can be made for educational purposes. Sooooooo... If 10 of you have the original.. there are 10 free copies.
Maybe you could wiggle ILADS into sharing a few copies at a bulk rate? I would certainly check on it. Leave no stone unturned.
OK.. AliG.. nice to know you are interested. Unfortunately we sent out 800 copies in MARYLAND .. and it isn't possible to type all the places we sent them too here on the board. If you are in another state.. please start a list and go for it. I do suggest keeping that list for future use.
And yes.. Lymemomtoo. Thanks for reminding me. The Harford County Lyme Disease Support Group, Inc.... in Maryland... took it another step further.. on their own. They sent out copies of the Lyme Times Children's Issue to ALL childrens doctors in their county. It was a lot of work.. but they did it... and I am thrilled. They are wonderful.
The Editor is Laura Savill.. and hey DLL.. the publisher looks to be in London.. in the UK.
Hey Northstar...
Your multiple choice question is baffling my itty bitty brain today. Sorry. I think my body and brain was under the train... rather than ON it.. during my return trip last night.
So please work with me here. My thought is you saw where I separated Lyme and chronic Lyme in the letter we sent??
If that is the case.. we all MUST start using the words CHRONIC Lyme. IDSA does NOT address this word or concept.. and says it doesn't even exist. So I try to make it a point to include the word CHRONIC as often as possible in all my stuff.
MY opinion is.. if you have Lyme.. treat it with Camp A's poopy protocol.. or even a better one... and it comes back on you... it could be considered possibly chronic.. or at least headed that way. HERE.. for these purposes... I don't mean it in a "oh my, we will never get rid of it" thingy. I simply mean we will need to go above and beyond Camp A's junk to get to the bottom of what is going on... and address it properly.
I also feel that chronic Lyme can be associated with anything over a year.. treated and/or untreated.
PLEASE don't hold me to this simple evaluation right now. My head hurts, my feet stink and I don't love ID ducks. OK?
Hope the above info helps. I will also type up a sample Highlights sheet.. in a bit.
posted
Tincup said: "From what I understand.. and DO check this out.. ONE copy from your guidelines can be made for educational purposes. Sooooooo... If 10 of you have the original.. there are 10 free copies.
Maybe you could wiggle ILADS into sharing a few copies at a bulk rate? I would certainly check on it. Leave no stone unturned."
I am new new new. That said, why the cost for the guidelines, esp., if they are copied and not printed?
I promise I'm not trying to be a pain and sorry if I'm dense, BUT, wouldn't it actually serve to promote their position in general if done in a professional and agreed-upon manner ... with very little expense to them?
It would seem that any funds lost from the sale of the guidelines would be superceded by the benefits of such a grassroots effort.
Thanks!
Edit ... on the ILADS order form, $6 ea bulk discount for orders of 40 or more.
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Tincup, sorry about the flurry from me. Please rest.
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Hay in TN..
What was that part about you not wanting to be "a pain"? You know ya might wanna try a little harder next time! HA!
JUST KIDDING!
My suggestion is.. when we sent out the letter and guidelines.. we want to be as "professional" looking as possible. In order to be taken seriously, we don't want to look like a bunch of ya-hoo's doing this important project.. or as in your case in Tennessee.. a bunch of yee-haws.
Yep.. I am now offically picking on you!
Get over it!
Soooooooooooooooo.. presenting with the most official "look" we can, will help our cause. In addition.. anytime you write anything.. according to the law.. it is automatically copyrighted. They don't require a little stamp or notice anymore declaring a copyright.. since the laws were updated. If you wrote me a love letter on a piece of toilet paper.. it is automatically copyrighted and no one else can use it.
And .. in MY opinion.. none of us should be testing those laws when doing our hard work efforts to help others. And trust me.. if the idiot ducks could make that an issue with us.. they would. So we need to be squeeky clean with all projects.
Now as to why the cost for the ILADS guidelines.. and yes I agree.. you WOULD think they would skip over that just to get the word out. BUT..
Ya know.. there IS a good reason they must charge. I checked it out... and I did a post on it when this first came up... cause I had the same concern. But.. with the brain down right now.. for the life of me I can't remember what the reason was! But it DID satisfy me at the time. Sorry I can't recall more details at this time.
PLEASE don't let anything I say discourage you. Where there is a will, there is a way. And remember.. this project can be scaled down to size to fit your immediate ability.
See, you're getting to know me, and well, you're right ... I am a pain. But there are times when my newly acquired OCD hyperfocus pays off (unless you ask my hubby).
I mostest surely is a dang YOKEL, 'cept aneethin raycist, sexist or them other durn "-ists".
Yep, you are right about the copyright thing, I wasn't really thinking. Uh, overeager? ... you don't have to answer that. Ever heard of moveon.org? Grassroots + technology can be extremely effective, so I'm excited!
I've already heard from one support group leader, emails are going out.
When you get a chance and are finished w/ being annoyed with me, please ....
Questions: Did you include or exclude ID guys? Curious if they might try and undermine efforts if included?
Could you elaborate more on how you put together your list of names?
That completed my installment for now ...
Lovingly from hicksville, Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Holy cow... you are a pistol.. ain't ya?
You said..
"Did you include or exclude ID guys? Curious if they might try and undermine efforts if included?"
We figured no sense in wasting good material, good money, and our time and energy on ID ducks. This is suppose to be their speciality. If they haven't got the picture yet.. they never will.
I have also made a concentrated effort to start working AROUND the idiots and not let them get on my nerves so badly. We get a lot more done moving forward by going around them.. rather than banging our heads into a wall every day trying to MAKE them learn or make them care.
I say let's just leave them in our dust!
You said.. "Could you elaborate more on how you put together your list of names?"
One at a time.
Ok.. there are sites that list doctors names and addresses. Try doing a search on the web. Also phone books. I called the places if a full address was not listed. Also.. some medical boards have an updated list of doctors names and addresses.. either hard copy and/or on a disk. I bought one for NC doctors when I went to Jem's hearing.
You said.. "That completed my installment for now."
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hayley, Good luck..If you can pull this off then that would be 2 states..
And Tincup is still recovering from dancing on the tables at Marguarita's so give her some time to recover..
inch by inch there will be a cure..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
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posted
Suggestions for the paper you can include in the envelope.
May I suggest.. approximately 8 or so bulleted points that are note worthy about Lyme... your main points. Simple.. to the point.. neatly done. and ONLY one page. Don't confuse them or bore them.
Here are some facts we used...
"Lyme Disease in ______(your state) - an Overview"
* Diagnosis of Lyme disease using the two-tiered method (ELISA, Western Blot) fails to detect up to 90 percent of Lyme disease cases.
* According to the CDC, Lyme disease is a "clinical diagnosis". Laboratory tests should neither be used to exclude a diagnosis, nor to determine an endpoint for treatment. No test has been developed that can accurately determine if the spirochetal organism has been erradicated.
* The EM rash may be absent in over 50 percent of patients. Fewer than 50 percent of Lyme disease patients recall a tick bite.
* The duration of antibiotic therapy should be guided by the patients clinical response rather than by an arbitrary (i.e. 30 day) treatment protocol.
* Borrelia burgdorferi has been detected in virtually every organ in the body. The increasing success of repeated and prolonged antibiotic treatment for chronic Lyme disease patients is consistant with a persistent infectious mechanism.
*According to published studies (University of MD), the cost for treating a patient with a tick bite averages $109.00. Treating patients with chronic Lyme disease can exceed $2,000.00 per month, for life.
* Studies indicate 81 percent of the ticks collected at various sites across the country were infected with Borrelia burgdorferi. The lonestar strain (Borrelia lonestari) has been detected in the lone star tick, mice, deer and other wildlife. The standard Lyme disease tests were not designed to detect this strain in patients.
*Babesia microti, Bartonella quintana, Bartonella henselae, Rocky Mountain Spotted Fever, Mycoplasma fermentans, Ehrlichia HGE and HME, and STARI have been detected in increasing numbers of Lyme disease patients.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Idea.
IF you can.. copy the ILADS schedule from their site.. and/or the LDA conference schedule .. and deliver them to doctors in your area. You can stop at hospitals/docs offices, etc. on your daily running around time.
The conferences are suppose to be really great again this year. Try to encourage all docs to go. They get credits for going which should be an additional incentive.
I agree, the ILADS professional book is worth the cost in the presentation.
If many of us focus on choice Docs and interists in our area - it would be worth the effort.
Talk to family and freinds and feel out who has been somewhat 'Lyme open' - knowing there is a problem, but unsure what to do about it.
This is a great idea, btw, really great.
It is a way for patient activists to bridge the work of the medical professionals with ILADS to the Docs in the feild. Seems a kind of calling where we are the ones to do it, under the circumstances. Enough of us doing this could really extend the ILADA Docs work a good long way.
If you go through the back door, and they have a look at the ILADS standard of care - they could well become compelled to work with it - less likely to buckle to insurers guidelines, more likely to question them. Medical sense may prevail.
Attending the conference brings it all up a notch..or at least being informed of it.
I would suggest, adding to the list of points - informing them of the Columbia Research Center and the Federal Legislation.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
Tincup, WHOOPIE for you; you've seen the fruits of your efforts plus other group leaders from your state on ALL the hard and timeconsuming work you all did. Bettyg
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Tincup-
Couldn't agree with you more about the importance of reaching the middle-people!
I thought a lot about this overnight, and ended up with a couple of questions that googling for the answers didn't help. maybe someone can point me in the right direction, online or wherever else for basic infomation.
1- why were the IDSA guidelines withdrawn?
your letter seems to suggest they were because consensus had moved from their position to ILAD's. Is this the case?
From the IDSA's page, it looks like they are in the process of updating guidelnes, and from what I seem to recall from discussion here, they are actually even more conservative than what stands?
2- I understand that the Clearinghouse for Guidelines' work is attached to a federal agency. Where does this agency fit into the lyme wars, and how authoratative is its voice?
For example, clearly its guidelines aren't the only guidelines out there. On a quicky search I saw a separate list of guidelines for the Family Practioners Society (some such) that claim to be the most authoratative on lyme. And CDC 2005-2006 webpages for individual states still seem to endorse the IDSA guidelines.
I hope you don't mind my playing devils advocate here, but it seems what you mentioned in the context of using copyrighted materials applies to any educational outreach- its got to be straight forward.
If the ILADS guidelines are the nationally accepted standard for lyme treatment, then great. But if they're not and physicians begin treating to that standard without educating themselves about the whole lyme controversy, I would expect the potential is there for those DR's to find themselves unexpectedly challenged on several fronts. Is that fair to the DR's?
I mean to be and am supportive of the effort to educate DR's. I just need to be better educated myself about the larger picture before I feel comfortable educating others.
thanks for any insights-
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Betty Geeeeeeeeeeee...
Sometimes you provide me the only smile I have all day. Thanks.
Mo..
Good idea. If you know local doctors and already have a relationship with them.. that might be a way to approach it.
My thought though would be... and I look at ME when using this scenerio..
I am ONE person. I do NOT present well professionally.. especially when I am so wrapped up emotionally in a topic.
In an office.. when facing a duck and/or not knowing where a person stands on an issue... I have difficulty sharing my thoughts in a logical sequence and intelligently.. and convincingly... in a TIMELY fashion.
I know this because I've been face to face with new doctors on numerous ocassions and have NEVER been able to get through to them much of anything... even when my life depended on it. It is frustrating and stressful, at best.
I also tend to get angry when they respond negatively, flipant, or uncaringly to my sincere attempts to find help for others. I must force myself to hold my tongue to not lash out at them and call them nice names like.. STUPID... or even worse. I guess I act this way after seeing so many suffer and hurting and dying... and not being able to get them help... no matter HOW I approach it.
When I DO approach these new doctors.. or when anyone would, actually... I am just one person.. not even a doctor. The doctor being approached sees me as ONLY one person who has an opinion.. and who is trying to TELL them what to do.
That approach won't work for me and I know it. Been there, done that. My suggestion is.. unless you look like a super model and are willing to bow to their every wish... and have 10 medical degrees that put them to shame .. or you pay them millions of dollars to bribe them.. most won't take too kindly to having a lay person sharing their opinions with them.
Plus.. with a visit to the doc.. you MIGHT get 5 minutes. That is not enough time to make valid points... and you risk blowing it and making us all look worse.
By sending the ILADS guidelines to them in the mail.. they don't see ONE person with an opinion. They see an established, professional organization.
They also have time (when THEY chose to review the material).. which.. although I know inside and out.. I can't express it as elequently as our LLMD's at ILADS can.
So my final thought is to keep it as professional as possible. It will not only go over better.. but YOU won't face the wrath of the ducks who are already convinced we are kooks.. it will also save you time, energy and money for traveling back and forth... and trust me .. LOTS of aggravation in the end.
sometimesdilly
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Member # 9982
posted
Tincup-
??
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Silly Dilly...
Good morning to you!
Good questions.
1- why were the IDSA guidelines withdrawn?
your letter seems to suggest they were because consensus had moved from their position to ILAD's. Is this the case?
HA! I ALMOST spit my hot tea on the computer screen when reading that question. Sorry!!!
If that were to happen.. that would be the day I would be able to say so-long to you all.
If that were to happen.. things would be so much more wonderful than we could ever dream. But in my lifetime.. I don't think it's going to become a reality.
In the meantime.. folks will continue to suffer, become disabled and die following the limited IDSA guidelines. It has been going on for years now.. and we are up against some strong headed ducks who want to hang on to their old ways in order to protect their ego's, reputations, and pocket books.
Also.. not sure why you got the impression my letter suggested they had changed their ways? From what I see, I am simply telling doctors the IDSA guidelines have been removed.. and the ILADS ones are valid. But I will certainly review what I wrote to double check it. Thanks for pointing that out.
```````````````````````````````````````````` Dilly said.. "From the IDSA's page, it looks like they are in the process of updating guidelnes, and from what I seem to recall from discussion here, they are actually even more conservative than what stands?"
*** Yes.. the word on the street is they are suppose to have had them updated... and I heard they were suppose to be even worse than before. From what I heard.. the protocol that Hopkins has used in the past on folks around here.. which I call the "magic bullet" theory... where they dispense ONE dose of doxy to prevent Lyme after a tick bite in an endemic area.. is said to be going in there too. This is all hear say and nothing official or confirmed. Anyhow..
The guidelines were suppose to be out in the early spring.. this past spring! It didn't happen. Then they were suppose to be out by "early summer". That also didn't happen.
My HOPE would be the IDSA handful of ducks have actually READ some recent medical infomation and are TRYING to do the right thing by us. But my brain tells me THAT will actually happen...
When pigs fly!
My guess is they are questioning HOW they can possibly twist the wording to make them sound right and us sound wrong.. without setting themselves up for more law suits.
posted
I agree totally on the mail package. I have the same problem dealing with our local offices (who still call it "Lyme's") Pediatric Doc here refused to treat a toddler with over 20 nymphal tick-bites! Stupid would be a complement ..
I thought for those who are only able to afford X number of copies of the glossy guidelines book - that if we do scope out the scene a bit through the community, we might get more bang for the buck if we send them to Docs we have some inkling to be open - they are out there - and have no knowledge of these guidelines, which is why your idea is working! Or, Docs that work in specialties where we believe they are coming across cases frequently, and can treat if they learn how. OR, send to the more "prominent" offices - cuz if Doc so-and-so is treating, the the patients of Doc such-snd such will pressure theirs to as well. - rather than doing a blanket sweep of run-off copies to all the Docs in the area -.
I agree that the book itself is much more impressive than a ditto.
(yes, I still call them dittos - remember the purple ink pages we used to get in school?)
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Do you think the persecution of the two Doc J's has anything to do with the delay in the guidelines? Meaning - they need to break a few more prominent knees before throwing down another gauntlet?
I wonder.
All the more reason coming through the back door with more Docs is a critical idea.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I just noticed Dilly said..
"Tincup-
??
Dilly" ````````````````````````````````````````
Sorry Dilly...
I'm here!
It takes me a while to think and type when I am feeling like a clam over roasting coals. And I had to take a quick break to eat something for breakfast and take my meds. I haven't forgotten you...
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Dilly said..
"2- I understand that the Clearinghouse for Guidelines' work is attached to a federal agency. Where does this agency fit into the lyme wars, and how authoratative is its voice?"
*** Not sure what you are talking about?? Sorry. What federal agency is attached to what work??
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Dilly said.. "For example, clearly its guidelines aren't the only guidelines out there. On a quicky search I saw a separate list of guidelines for the Family Practioners Society (some such) that claim to be the most authoratative on lyme. And CDC 2005-2006 webpages for individual states still seem to endorse the IDSA guidelines."
*** To start with... perhaps you could read the ILADS guidelines when you have time... and the other ones out there. That may help you to understand the purpose of the ILADS guidelines... and what they are hoping to accomplish for the hundreds of thousands of patients coming down with Lyme disease ... and those who are already ill and/or disabled from it.. and those who will be in the future.
To simplify the guidelines basic intentions for folks ... in my words...
They are simply a "guideline" for doctors and patients to review and use as they see fit. They basically differ from the old and outdated guidelines because they:
1. Accept the fact there IS such a thing as "chronic Lyme"... and deal with it. IDSA denies the existance of chronic Lyme disease and therefore, does not address treating it. That leaves MOST of us hear and else where hanging out there with NO one knowing what to do for us.
2. They address the existance and importance of of coinfections in patients.... which is not discussed in the IDSA guidelines.
3. No where, for example... do ILADS guidelines instruct or demand doctors to use xxx drug for xxx days at xxx dose to treat Lyme or Babs, etc.. They simply allow the physicians and patients to do what works until there is a definate cure for everyone.
4. They also mention blood test problems .. and suggest not to rule out Lyme due to a negative test.
5. And they mention we should not deny treatment to patients who may be sero-negative, for numerous reasons. IDSA wants TWO positive tests to prove Lyme.. when they know good and well that the tests are notorious for missing cases. ISince a number of the writers and supporters of those guidelines have $$ involved in patents and tests, etc... they would naturally not discredit them as long as the BIG BUCKS are coming in.
6. But the main point, I think, is they do not limit our treatment to an abitrary course that has never been substantiated or proven to work.. such as 30 days doxy... for every patient coming through the door. As we know.. that does not work and it does not make sense.
7. The ILADS guidelines are prepared by a variety of doctors from a whole host of different specialities... from around the country... who have clinical experience in treating patients.. rather than a handful of people who.. oops.. well let's just say a few Infectious Disease fellows who have led the way for many years and who have .. by flubbing up so badly.. created a Camp "B" of progressive thinkers and dedicated doctors.
Enough said there. Anyhow...
Again.. what we share are "guidelines"... NOT hard and fast rules.
To quote ILADS...... "This report, completed in November 2003, is intended to serve as a resource for physicians, public health officials and organizations involved in the evaluation and treatment of Lyme disease."
Doctors who read them can do exactly what you or I do when we see a pizza commercial on the TV. We can buy THAT pizza.. or take our pick from other pizzas.
Talk about pizza. Would we rather be limited to a small pizza with tomatoe sauce and just a spit of cheese? IDSA
Or would we prefer the ability to have... if we wanted .. a BIG pizza with a choice of LOTS of toppings? ILADS
IDSA vs. ILADS
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Dilly said.. "I hope you don't mind my playing devils advocate here, but it seems what you mentioned in the context of using copyrighted materials applies to any educational outreach- its got to be straight forward."
*** Absolutely! I like straight forward.
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Dilly said.. "If the ILADS guidelines are the nationally accepted standard for lyme treatment, then great. But if they're not and physicians begin treating to that standard without educating themselves about the whole lyme controversy, I would expect the potential is there for those DR's to find themselves unexpectedly challenged on several fronts. Is that fair to the DR's?"
*** Do me a favor... Change the third word above in your question to read IDSA (instead of ILADS).. then read your question again.
I think you will find your answer by doing that.
If not...
Going back to the pizza again.... Is it MY responsibility to provide a pizza, loaded with many different toppings, to anyone who might want a pizza?
I don't think so.
I also don't need to provide doctors all there is to know about Lyme. Last I heard.. most of them COULD read and write... and I am sure THEY have computer access too?
I'll also not provide them something that I know for a fact has caused so many disasterous results (IDSA guidelines). That would be like serving a pizza with sausage that I KNOW went bad and could make someone sick.
Bottom line... I can show them MY pizza.. and if they want to take a bite.. fine. If not.. it is THEIR responsibility to get another pizza. It isn't MY responsibility to provide it for them.
Same with a car dealer. If you don't buy their car from their Ford car lot.. are they responsible to give you another car from a Chevy car lot?
Dilly said.. "I mean to be and am supportive of the effort to educate DR's. I just need to be better educated myself about the larger picture before I feel comfortable educating others."
Yes.. again.. please do read the ILADS guidelines inside and out. It IS important to educate yourself.. for sure.. before you try to educate others. My brief summary of the guidelines was NOT a great one.. no where near complete.. and it did not do justice to the topic we are discussing. Sorry.
I would put more time and effort into the response here... if I didn't just hear the National Anthem... followed by the words..
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Tincup-
thanks for your lengthy reply. to the pizza thing in a minute (since I'm on yeast elim diet, maybe it would make my mouth water less to use an analogy about choices from a veggy tray...
I have read the ILAD guidelines- many times, actually, since large amounts of content don't stay stuck in my brain for very long.
You certainly don't have to convice ME that the guidelines are worthwhile, vital, even, and that the IDs are the bad guys and that their guidelines have hurt people. I've been on the board long enough to hear the stories first hand, and I've been reading all I could find about lyme for a lot longer than I've been here. And those guidelines have certainly hurt me too and quite possibly my 4 year son who I was pregnant with when I first met up with Lyme, and who I breastfed for over 3 years.
I'm with you, Tincup. (and more than that, I am on this board because of you- my DR, Dr. L in NY gave me your name when I told him I lived in Maryland and that I wanted to become very involved in lyme advocacy. Still do, and am beginning to do just that).
Sorry to make you almost spit out your tea. It was a rhetorical question about ILADS guidelines being the standard. Obviously they are not, which was part of my point. Back to the pizza thing.
I agree with you about the veggy-pizza analogy, but only up to a point. I don't think it is necessary-or desirable-to provide DR's with a lyme/lyme tx primer. You're right, they can read for themselves,etc.
But, I think it is really important to be very straightforward about presenting the ILADS guidelines. I don't think it has to be complicated. But I think mention of the IDSA guidelines being withdrawn needs to be put in a context of their being withdrawn while newer guidelines are being worked upon. IMO, anything else is misleading.
For that matter, why mention IDSA guidelines at all? It would be completely straight forward to state in a letter somehting like--the support groups of x state have endorsed the ILADS guidelines for tx, and that given the severity of the lyme epidimic in our state, our group is working on bringing those guidelines to your attention, so that you may better serve their patients.
Wording like that leaves the responsibility on DR's to educate themselves about alternative guidelines. And it has the benefit of staying current past when the new and apparently loathsome IDSA guidelines hit the street, which on their website says fall 2006.
Last, before I have to eat somethign too and try to figure out which meds I've forgotten to take so far today--
About the DR's getting whammed. What i was saying was that all of us need to get--and keep- DR's on our side. The LLMD's who are out there know what risks they are taking in doing what is right- that's why there are so few of them out there.
I'd be concerned for DR's who were doing the right thing without knowing what the consequences might be for them 'cause they had some silly notion that the ILADS guidelines represented a mainstream consensus. IMO, that isn't fair to them. and we NEED them to be allies.
Take good care, Tincup. Hope to hear soon that you're feeling more happy as a clam than clam on the coals.
From on the same page of music, just humming a few bars in a different key,
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dilly said..
"I think it is really important to be very straightforward about presenting the ILADS guidelines. I don't think it has to be complicated. But I think mention of the IDSA guidelines being withdrawn needs to be put in a context of their being withdrawn while newer guidelines are being worked upon. IMO, anything else is misleading."
*** Fact is... The IDSA guidelines have been officially withdrawn. We don't actually know WHY they have been. It is assumed, by me at least, that they expired (outdated)... because the site mentions if they are more than 5 years old... which they are.. they will be withdrawn. But it could have been for other reasons??
It is not my responsibility to contact IDSA and ask them if they plan to make new ones.. and IF they do.. when they will be available.
In addition, IDSA may submit new guidelines in the next week.. the next 6 years... or they may never submit them at all. IF they submit them.. that does not mean they will be accepted for use. I do not have a crystal ball.. and I do not want to guess what they intended to do.
I honestly believe I gave the facts as I know them to be. I said we sent them to these docs as an "update for the medical diagnosis and treatment of Lyme"..." It is an update.
I said the IDSA guidelines have been officially withdrawn. They have... along with over 700 outdated guidelines... which is what I said.
So.. if I mislead them.. I am not sure how.
If I took advantage of this situation to benefit those who are suffering, losing their lives, and losing their doctors liscenses... in some way, without breaking laws or committing a mortal sin...
GOOD FOR ME! And I'd do it again.
What's that? I actually think I hear cheers from heaven.
SOME ONE needs to do SOMETHING. And do it NOW!
Ok....
You are walking down a trail through the woods.
You come around a curve in the path... which suddenly opens up on a beautiful lake. About 200 yeards off shore is a HUGE sign that says..
"NO SWIMMING"
Then you look again and see a small child about 100 yards out. He is calling for help. He is drowning.
What do I do? Obey the sign and let the child drown?
Or do I hope for forgiveness as I dive in and head there to try and save his life?
That is EXACTLY what I am facing here. Do I stop and worry what others on the sidelines might think.. and tip the scales so we lose again and more lives are destroyed?
Dilly said.. "For that matter, why mention IDSA guidelines at all? It would be completely straight forward to state in a letter somehting like--the support groups of x state have endorsed the ILADS guidelines for tx, and that given the severity of the lyme epidimic in our state, our group is working on bringing those guidelines to your attention, so that you may better serve their patients."
I do believe the wording of the letter is a mute point at this time. It's a bit too late. If you are in Maryland... and are worried about the Maryland doctors being misled.. I am sorry to say the damage has already been done. No time for more thinking.. no more discussion. Sorry.. it's done. The letters were sent out months ago.
And.. going back to the point of this post .. I think they may be helping.
Dilly.. if you would like to share your opinions with the others in Maryland about future plans we may have.. please do. PLEASE do! We would LOVE to have more advocates helping out as we continue to try to help others here. But it would be best to make comments and suggestions before the action is taken, of course. Please contact one of the local groups and attend meetings if you are able. We'd LOVE to have your help... really!!
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Dilly said.. "Wording like that leaves the responsibility on DR's to educate themselves about alternative guidelines. And it has the benefit of staying current past when the new and apparently loathsome IDSA guidelines hit the street, which on their website says fall 2006."
*** Not sure I understood all of that.. but I did understand the "fall 2006" comment. To my recollection.. that is the third time they have changed the date. In my opinion.. if the doctors want to check out other guidelines for themselves.. they will.
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Dilly said.. "I'd be concerned for DR's who were doing the right thing without knowing what the consequences might be for them 'cause they had some silly notion that the ILADS guidelines represented a mainstream consensus. IMO, that isn't fair to them. and we NEED them to be allies."
To be honest... I have bigger fish to fry.
I can't worry myself over the possibility that somewhere, somehow, some doctor might not do what they were trained to do.. and use their common sense and advanced medical training when reading their mail.
Does a car dealer who mails out an advertisement really expect everyone who gets the ad to come buy a new vehicle from them? Does anyone think the car sales men stay up at night because they are worried someone MIGHT buy their car without having checked out all other possibilities first?
Sorry.. I must say I am not going to lose sleep tonight because I sent out updated medical information to educated people who MAY be able to help their patients after they read it.
I have bigger fish to fry. `````````````````````````````````````````````````` Ok Dilly.. your next move is to say a prayer for me.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
"Your multiple choice question is baffling my itty bitty brain today. Sorry. I think my body and brain was under the train... rather than ON it.. during my return trip last night."
Well, I re-read it, and did not understand it either...so that makes 2 of us. I sometimes write cryptically, to avoid the blabberosios, but then again, maybe I think cryptically, too.
But, you did answer my question, so thank you !
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
How DO most doctors, not ID guys, but ALL the other ones, generally learn about Lyme? What is the extent to which doctors are taught about any single bacteria in a world of millions and millions?
It can't be more than a blip on a very large radar screen to them, in general. And that blip is the prevailing thought at the time.
Which is why I think Tincup and her group are seeing success. Most docs just don't know any better ... for any variety of reasons.
Providing ILADS guidelines simply and effectively gives them new tools which they may or may not utilyze.
For all our sakes, I hope that we do see a real turnaround in our lifetimes. I think about how long it took for handwashing as infection control to become mainstream, and that gives me pause.
But today, information comes out at alarming rates. Look at how blogging has affected mainstream media. Who would have thought that possible 10 years ago?
So we are sort of like the medical/Lyme equivilant of bloggers if we can put into the hands of doctors information that they would otherwise not seek out on their own.
Blog on!
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
TinCup-
Wish that I had met you over those marquritas, and our that our first conversation had been about taking turns dancing on the tables. Now, that would have been fine.
As it is, reading your last post, I have the sad sense that you feel I am criticizing your idea/the 800 letter effort. Sorry if that is so, because it certainly isn't my intent at all.
I think the guideline-sending is a great idea- I think I said that first thing. It sounds like one that is being greeted with enthuasism, so more guide-line sending elsewhere (and perhaps in MD too)is on the way.
I wasn't looking back on what you et al have already done, and yay, sending guidelines appears to be making a difference, so yay, let's all do more, as much as possible as soon as possible.
I WAS commenting on the language of the one section in the "template" letter you provided for others to use in the future, and I still think my concern is valid.
Other folks who plan on getting involved with this can and should and will come to their own conclusions about what "hook/purpose for writing they want to include in their cover letters.
Drowning people and the like analogies aside- (Tincup- I am on the same side as you, and I get it, really I do..)...
My point is that I think anyone planning to do this can have exactly the same goal as you did, in the same spirit and for the same reasons, AND and achieve the same results, WITHOUT slanting the info one iota. So why do it?
I hope we meet up someday, in person or to happily collaborate on an online project together. And I'd love to be added onto any state-level lyme advocacy email list that might exists.
You've been fighting the good fight for a long time, and I am a newbie to the lyme advocacy world. I am not a novice advocate, though. I have made a difference at the national level in matters that matter, and have a great deal of experience organizing at the grassroots level. And certainly for the next year at least, lyme tx permitting, I have 5-6 hours a day, 5 days a week to work on advocacy, (particularly relating to developing educational resources) and others' projects as well.
By the by, I have a letter of introduction in hand to the lawyer-fellow for MD who is responsible for assigning/suggesting pro bono work for lawfirms across the state. I'm going to approach him to suggest a portion of the caseload be set aside for lyme-related matters. Not neccesarily med-mal type cases, but help with dealing with insurance companies and Social Security and the financial pressures of being bankruptred by lyme- that kind of help. Any suggestions you or anyone else has about what could be added to a list of legal needs?
So, TinCup, how's about putting down that sword of yours for a moment, fine warrior, and shaking hands hello?
hugs- Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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