'BIG' PICTURE

GREETINGS ALL,

This is simply an open question:'What can we do to make

the biggest difference in the quality of our (Lymies) lives?'

(Is it more support in on-line forums? More Education? Research? More $$$ for ALL things (S)Lyme? Getting Rid of CDC/IDS Guidelines for Dx & Tx? I know all of these are important; but what should we focus on, or put more of our energies into, for the foreseeable future)

If many people respond, we'll have a much better
idea of what could/should be done.

Personally I feel that we need to start off with getting it recognized that we aren't asking for any treatments that aren't already being used - long term, high dose abx is used for treating acne, why can't we use it when we have an infection??????


Next would be getting everyone to understand that the very strict Lyme standards are for only 1 strain of the bacteria - there are over 300 world wide - 100 of them are here in the US - and it's unknown how many of them actually cause disease!!! So if Lyme is based on only one strain of the bacteria, maybe we should start calling all other strains a different thing? Like Lyme-like illness? There's already a name that has been used for this - Master's Disease. It's a "Lyme-like" disease that responds to the exact same treatment as Lyme!!! Imagine that! Maybe then more people can get the right treatment with less hassle. (for more info on this, look up Dr. Edwin Masters or start here: lymedisease.org/news/lyme_disease_views/141.html#comment-8578
www.publichealthalert.org/Articles/DottieHeffron/Masters.htm

But I have a very narrow view of these things sometimes, which is why I usually leave this stuff to those more suited. LOL!

I think it depends on what the goal is. Is it to make an impact now or is it to make an impact in the long term? Both are ideal of course.

Changing CDC guidelines is not a short-term task. Although no one can deny the importance of this, it will not help people NOW because it will not be achieved NOW.

Education, research and dollars? I consider this the same. All will take a lot of time, dedication and money while things move at a snail's pace. The lyme fight is all about changing the 'culture' around lyme. It is simlar to the historical battle of trying to convince people that tobacco causes cancer. It took DECADES for the scientific community to agree on it and for government guidelines and policies to follow suit.

I think if we want to continue to make an impact for people who are fighting this disease NOW, then the way to do that is through the provision of tools to help these people find the information that they need NOW. A lyme forum is a great way to do that. Although, I do have another thought.

Perhaps we can look into developing a tool to help people find informtion quicker. A database where people can plug in:
-- age when bit.
-- location where bit (latitude/longitude).
-- gender.
-- list of symptoms.
-- how long they were sick before treatment began.
-- how long they were sick after treatment began.
-- list of healing methods 'tried'
-- healing methods that were successful for specific symptoms.
-- detox methods.
-- detox methods that can be done at home.
-- herbal detox methods.
-- etc.

Let's say that we had such a database. And let's say that we also had:
-- a tool that someone could use in order to submit their own information into it and edit that information as time goes on. (thereby allowing the database to naturally 'grow' without having 'someone' needing to record all the information for all other people.)
-- a tool that allowed people to easily search and view the information.
-- a tool for 'power users' where they could do advanced analysis on the data in order to look for trends and profiles.

Such a tool would be powerful. Perhaps we could find out
-- What treatment may give the quickest route to healing?
-- What treatment gives the highest success rate?
-- What treatments gives the most likely success rate for symtpom(s) X?
-- Does the person's age or gender matter, when determining the most successful treatment?
-- Does length of infection matter?
-- Does geographic location matter (i.e. latititude and longitude where the person got bit)?
-- Do different igenex band combinations indicate different successes with different treatments?

... and on and on it could go. We could become our own experts. The lyme population could drive the research and the education, instead of relying on others to do it. Especially since many of those 'others' spend research time and dollars in the wrong areas.

The way I see things, there is so much information out there already. Way more than if this was a 'standard' disease with a 'standard' treatment protocol that somewhat worked (think 'diabetes'). The CDC stance has forced the lyme-infected population to look outside-the-box for treatment, and that has caused different 'research' in a whole lot of different directions all at the same time. The problem is that the information is just not in a highly useable form.

To develop such a tool would require a lot of highly skilled people, computer resources, time and money Hence, this would likely be a pipe dream But, gee, what a dream!!

absolutely nothing for me!

I refuse to take part in one more wasted moment of my life spending money on doctors or getting mad about it.

I still have all the problems with lyme I ever had, but Ive been able to work around them.

I spent the day on the lake with friends last sunday, (I am so happy to be off Doxy!) a boost of spirits.

I'm not sure the truth will ever be released to us about lyme, it is clear to me they don't want it to be.