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Autumn, 2006
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)
"Crime against Lyme"

October 9, 2006 is a sad day for humanity and, in particular, for the Lyme community. That day, a group of people entrusted with the lives of patients published a document which commits those same patients to lifelong debilitation and suffering - an action beyond rational comprehension. For those now adversely affected, it seems as though they have won, and we have lost. Appearances can be deceiving.

There is a law in physics which states: for all action, there is an opposite and equal reaction. Not recommending - effectively banning - clinical discretion and classes of drugs, alternative treatments, and even supplements for any manifestation of Lyme disease is an action so reprehensible that it already has precipitated the plan for that opposite and equal reaction.

Lyme leaders across the nation have been teleconferencing and meeting almost non-stop to develop an action plan. That plan is designed to show the world that Lyme patients are not victims, Lyme patients are not helpless, Lyme patients are not incapable of fighting back. The plan is predicated on the fact that justice must be served.

We have pulled together a team of experts, and Lyme groups nationwide have been uniting so that the actions that are taken will be unified and focused. We have apprised appropriate constituencies of our actions and will continue to as actions unfold

As you know, it would be inappropriate to discuss all actions publicly at this time. We will, however, be letting you know each time an action is needed, and many will be needed. We need everyone's help. This is not the time to bicker amongst ourselves about who knows what when, but it is the time to network amongst ourselves about who can do what when. Some of the actions we propose will require more effort on your part. When that happens, we trust that those of you who are able will support such actions. Other actions may require a lesser effort but might need greater numbers. All should be able to participate to make this campaign successful.

Because so many are ill, we ask that groups out there keep your own group initiatives limited so that patients won't have to make a choice. A lot of people have good ideas, but fragmented actions do not have a large impact- 20 small petitions, for example, do not have the same effect as one large one. We think the choice needs to be the nationally coordinated campaign, because the chances of success will be greater if we are all working together. Additionally, some groups may take actions inadvertently which may endanger other actions already begun nationally. There are some localized actions you can take, however. If you are not in a group and none operates near you, join an online group, or you can take most actions as an individual. If you have a group, mobilize:
* actively recruit people for your group
* update your contact lists (telephone, fax, email):
* all newspapers in your group area (include weeklies), radio, TV
* all reporters you have established a relationship with over time
* all federal legislators in your state, both US House and US Senate,
* your state officials in both houses, your governor,
* your group members with note in which congressional and state districts they reside
* write letters to the editor in your local papers describing how guidelines affect you/family

To begin, we have a petition on website for those 18 years and older to sign. Send to your entire address book, as I have to mine. Get family members, friends, and co-workers, ask them to circulate it among their lists. Who would oppose a petition asking for Lyme patients to be accorded the most basic of human rights, given even to our enemies, the right to be treated when sick? Names and addresses will NOT appear on the internet but will be printed out with the petition when it is ready to be presented to the appropriate entity. LDA never sells names or shares them with marketers. The petition will be used in an effort to advance our cause at the appropriate time and will be kept private until that time. Remember, like you, LDA is all patients and families of patients - and all volunteer.

The Lyme treatment gatekeepers have never been really challenged. That is about to change, and we will all be a part of that challenge. It will require courage, compassion, intelligence, endurance and effort on the part of our community, but I know we can accomplish great things together. We must, because our lives and those of our families and friends are at stake now. Five years without treatment is not an option. We must and will prevail.

Pat Smith, President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 information line
732 938-7215 fax

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