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» LymeNet Flash » Questions and Discussion » Medical Questions » Idea

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Author Topic: Idea
SacredHeart
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I'm not sure if this has been done yet, or not. I am fairly new to lyme, as I was just diagnosed not long ago, but I think I have a good idea.

It seems to me that we have a unique opportunity on this forum, with such a large group of users, to first create a simple poll based on one type of protocol. People could submit their level of success, or cure on that protocol.

I know that the disease is complex, and that we are all trying different things at different times. Furthermore we all have different mixes of infections. I think the forum serves the purpose of detailed discussion.

I personally would just like to see a basic chart of data based on levels of success with different protocol. That type of data could be a spring board to further discussion.

I even envision groups of people breaking off in, lets say, groups of fifty, and trying particular protocols, and reporting back with the numbers regarding success.

This of course, is probably too much to hope for, but we might have to be our own organization. We are already the lab rats, so lets get more scientific?

I am well aware that there are TONS of details that would need to be worked out. Still, I wish there was some way to organize it. Maybe I'll build a site. =)

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Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

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Jamers
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I think this is an excellent idea! Too often when we ask a question, say "how did Rifampin work for you?" we get many answers all over the board. Some people can't tolerate it, some it worked for well but they had to take it for a year... and so on.

For me, I have done the antibiotics and am now doing my own version of Cowden herbs. I hear it helps others and then there are those that say it hasn't helped at all. It would be interesting to see how many it has actually helped in one place. I feel it's helping me now [Smile]

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Diagnosed Pos. Lyme Nov. 17, 2010, Igx.
Pos. Babesia Duncani March 2011, Igx.
Clinical diagnosis for Bartonella

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Robin123
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It's a nice idea, but the reality is that we're all different and each of us responds differently to treatments. So I don't think you're ever going to get a consensus on one treatment, nor even agreement about the treatment.

For example, oral clindamycin stopped my Lyme symptoms for 5 years, but it doesn't do anything for many others and it bothers many people.

People also differ on which kind of magnesium they respond to, etc.

Also what about the order of treating infections? Sometimes people have to treat other co-infections first before Lyme treatment will work.

All I'm saying is you're going to get a diversity of opinion about every treatment, and is that going to be useful?

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Lymetoo
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Don't forget that we do have a "search" feature here. You can research any topic by clicking on the tiny word "search" up there by the directory.

That will get you started and you can always add your comments to any threads that you think may help someone.

--------------------
--Lymetutu--
Opinions, not medical advice!

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VV
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Robin, why in the world would you be trying to dissuade someone from collecting data on Lyme treatment effectiveness?

Just because "we're all different" doesn't mean there aren't patterns to be observed and learn from.

Some treatments will have a higher success rate than others. That's just the nature of the game, and anyone playing the odds is likely to try those things with a higher success rate first.

Lyme is complicated, but there is signal in the noise and we have to find it.

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lpkayak
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I cant speak for robin but i know over time i have tried to figure out what works and i mean over a long time....20 yrs or so

And what i run into is not just that each person is unique....there are just soooooo many variables

Patients have different genes, different medical and environmental histories,

There are so many coinfections and we dont know them all

Lyme has so many strains

There are so many sx....

Many times i tried to make a spread sheet to figure it out or just get a ruff idea but there are just too many variables

Along the way there have been discoveries that explain why something isnt working...cyst form, biofilm,...

And most recently the understanding that killing off one pathogen helps others get stronger

It is very complicated...i have asked llmds and scientists at conferences what the best tx is they dont know either

How the patient responds to a specific tx gives an experienced llmd hints on what is going on so they can make decisions about what to do next

But the llmds i talked to said pick one doc (a good doc) and communicate and cooperate with them for an extended period of time

Pathogens are resistant for many reasons now...the idea of take two a day for ten days curing lyme is probably never gonna work

What i have seen over and over help ppl is not focusing on what pill to take or what tx: rife, stem cell etc

But start with the basics...clean up your body and that means your living environment

Get good sleep and good food and less stress and less emfs and no mold etc etc etc

Ive left out a million things. We constantly learn new things to do and not do...

Trying to figure it out alone can cause huge stress

This is what i have learned...since knowing i had lyme in the early 80s ...searching for a dx for 15 years...four years of oruginal tx,
Many conferences...and at least 3 more llmds and many books and LN

I wonder how many of us will still be here when they announce they have found the cure

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Lyme? Its complicated. Educate yourself.

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Robin123
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VV, I'm not trying to dissuade SacredHeart from doing it if they want to. If as you put it, we can find signal in the noise, that would be great. But as a person who's watched this for 8 years now, I cannot predict who is going to do well from something and who isn't. Can't be done.

I'm just giving honest feedback from not only reading about our diversity here, but also when I go to any support groups - there is NO consensus on what works and what doesn't work, and I think that's because of all the variables involved -

the different mix of illnesses, whether we have other loads like other viruses and environmental toxins and mold, etc, what Lyme genospecies we have (B. burgdorferi, B. miyamotoi, etc), which strains we have (100 in this country, 300 worldwide, so we don't even have the same Lyme strains here!),

whether we're good detoxers, whether we have allergies, where are our strengths and weaknesses are in our bodies -

I'm simply giving the feedback that I don't think we're going to be able to get a consensus about anything. What I have seen is that people do need to bloodtest, work with a really good practitioner, and try stuff and see whether it works.

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droid1226
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I agree with Robin in the sense that there are countless factors on why one is sick. But there are universal modalities people use to improve quality of life. Those things like detox, juicing, pain management, CBD oil, herbals, antibiotics etc..that there would be consensus on just to improve everyday life.

I'd be glad to help with the tech side of things.

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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SacredHeart
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Droid, anything you could do tech wise would be great, because that really isn't my field.

Maybe we can just keep this thread going and see who is interested in sharing what protocol they are on. That would be the first place to start. If the thread dies, then I won't worry about it.

Some people are doing standard protocols and some people are kind of making it up as they go along.


I taught science and math for a living before I got sick. I was impressed by the way Dr. Cowden created and tweaked his protocols, and was always concerned about the patients that didn't get well. I think we could do something similar.

If we start with just basic data collection I think it would be useful. Or, someone that knows a lot more than me about this could help me create some kind of a form a user could fill out, and the data could just compile over time.

That might be the best thing to do. A form with a list of infections, treatment protocols, ect...As basic as possible...

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Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

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droid1226
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Yes, I actually do wordpress sites and have a great contest plugin that I could strip down and use for it. I love analytics as well. Not trying to cure the disease but make it manageable for those really struggling and improve lives of those who are functioning but sick.

I would need help on the info to populate content on the site. That's always the problem I run into. But there's enough experience and knowledge here to help with that.

Obviously what works for one doesn't for another and all the things Robin said but focusing on life improving behavior and things people could discuss with their Dr. that could help alleviate some pains or reverse the downward spiral.

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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SacredHeart
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Droid-

I'll try and create some kind of content that people can fill out. Then we can add and tweak based on opinions. I'll post it for you, and others to look out.

I'm sure we could find enough lyme patients to fill out the info. Facebook, and twitter, along with all the lyme boards are full of us. =)

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Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

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Lymetoo
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Sacred... Why not do with each protocol what Keebler does with her collection of links .. by topic.

You could begin a thread on "Rifampin .. What worked for you?" (for example.)

You would be responsible for finding additional information (and others can help you) to add to the thread as you find it.

See Keebler's "Magnesium Links" for example:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/123746?#000012

--------------------
--Lymetutu--
Opinions, not medical advice!

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SacredHeart
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That is a good idea lymetoo. Maybe for each protocol topic and question set you could keep them at the top of the page like those other topics that are permanent? That way they don't get lost in the noise,would be easy to reference, and would maximize participation.

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Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

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Lymetoo
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That's why I said you would be responsible. We have a few too many stickies right now and I doubt any of those will be going anywhere! [Smile]

So.. you will need to be able to find your thread and add to it.

You can always search your threads that you have started. Just click on the "profile" next to the time and date by your name and then look for it on the right.

I can explain that better if need be.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Robin123
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If you can discover common healing aspects, more power to you. I have listened to several webinars, for example, this year, discussing alternative healing modalities, thyroid, cancer, digestion, there's been a summit on gluten, and I think a lot more - lots of people are focusing on what improves health for them, which is fine and important to know about.
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SacredHeart
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Droid, your inbox is full.

We will see...I'm still trying to figure out the basics. =)

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Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

Posts: 595 | From Texas Crossroads | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
   

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