Patient-Formulated Lyme Disease Survey Draft

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sat 16 Aug 2014 7:17

OK. Just a preliminary...

The antibiotics information can be gathered using a series of nested drop-down menus:


Please select the antibiotic or antibiotics prescribed for your Lyme infection as well as Dosage, Frequency, Duration, and Outcome of each:

Antibiotics:

Doxycycline
Minocycline
Amoxicillin


Then for each antibiotic, we can list relevant dosages:

Doxy -> 100mg, 200mg
Mino -> 50mg, 100mg, 200mg
Amox -> 250mg, 500mg, 875mg, 1g


Then, for each possible dosage, they can choose the frequency:

Doxy -> 100mg -> (1X day, 2X day, 3X day, 4X day); 200mg -> (1X day, 2X day, 3X day, 4X day)

And so on for each possible frequency for each antibiotic.


Then also under each type of [antibiotic+frequency], we can ask the duration:

Doxy -> 100mg -> 2X day -> [{10 - 21 days}, {21 - 60 days}, {60 - 90 days}, {3 - 6 months}, {6 months - 1 year}, {Longer than 1 year}]


Finally, we can ask the outcome for each [Antibiotic+Dosage+Frequency+Duration] combination as:

[Successful, Somewhat Successful, Unsuccessful]

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(The antibiotics I listed are just the ones I took. There are definitely more than those)

The "pulsed" antibiotics situation is a little trickier. I'll go and try to figure out the best way to gather that data.

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Sat 16 Aug 2014 13:03

No sooner than I offer up my opinion that it could be no one is working on a treatments' section, than dlf and velvetmagnetta prove me wrong in a big way. :)

Do we need to be doing something on herbal remedies or natural remedies? I do not know much about these, but I know they have their advocates, and I respect a lot of what those individuals have to say.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sat 16 Aug 2014 16:03

Have no fear - we're on it! When one of us is down, another one's up. And somehow, together, we will achieve this goal.

I was thinking about how to approach the Alternative Treatments section. There are so many. Perhaps we can start with all the well-known protocols:

Buhner
Shoemaker
Marshall (does anybody do that one anymore?)
Cowden
Burrascano

Some do include antibiotics, but they have a whole mess of their own herbal and vitamin supplements.

Here is a pretty darn inclusive list of all the crazy sh_t people will do to get better:

http://whatislyme.com/different-lyme-protocols/

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Since all these protocols are pretty involved, we can ask if the respondent followed all the way through (yes or no) and what the outcome was (Successful, somewhat successful, unsuccessful).

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For people who are not following specific protocols, we should probably try and list all the vitamins and herbal supplements most commonly used:

Vit B12 (and other B's)
Vit E
Vit D
Vit C
Fish Oil
Krill Oil

There are like a million herbal remedies. I vote for "Jasmine Auriculatum" of course, but not many people have tried that one. Hmmm...I can't think of any right now...drawing a blank. Maybe someone else more familiar with all the herbals can list them? Please add to the vitamin and supplements list as well.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sat 16 Aug 2014 18:22

I remember an herbal remedy I did for quite a while (2 years) - Samento.

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LHCTom
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by LHCTom » Sat 16 Aug 2014 20:04

Don't forget, I don't believe anyone is collecting questions yet.
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

phyfe
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by phyfe » Sat 16 Aug 2014 21:08

I just want to thank everyone for all your good wishes. I'm home from the hospital, but they found something pretty major and I will be going back in soon.

I hope you all keep moving forward with this very important work and hopefully I'll be able to help again in a few weeks.

Best wishes to you all!

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LHCTom
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by LHCTom » Sat 16 Aug 2014 21:30

Hi

This should be the latest copy phyfe sent me.

I'm putting that copy online so everyone can see what is there so far.

We need to decide what the next steps should be

Keep adding?

Review and Organize?

Convert to survey style, Multiple choice, etc...

https://docs.google.com/document/d/1sPu ... oCQCKs/pub

thoughts?
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Sat 16 Aug 2014 23:23

Personally, I am going to review and try to organize, and probably add during that process.

This is not a static situation, nor will it be until after the survey is trialed. Even then it will remain a somewhat fluid process. Certainly, fluid characterizes it today.

That doesn't mean everybody has to tackle what we have in the same way as me. I hope they don't, especially since I am old school. That means I have to print this out and eyeball it and draw lines in and through and around...everything. Make a mess out of it. Then make a mess of it again. But only I need see that, and it is an approach that works for me.

It may take a day or two, but I will come back with my recommendations.

Hats off, again, to Phyfe for getting us to this level, all the while being sicker than any of us knew. And thank you, LHCTom, for stepping up to deal with a headache I wouldn't wish on anyone.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sun 17 Aug 2014 3:27

I realized that it sounded rude when I said:
Here is a pretty darn inclusive list of all the crazy sh_t people will do to get better:

http://whatislyme.com/different-lyme-protocols/
But I just want you to know that I am one of those people! I have tried several of the alternative treatments on this list all in the desperate attempt to get just a little bit better.

Maybe a large-scale surveillance of the efficacy of these remedies will prove that some are crap, but others are actually helpful.

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Sun 17 Aug 2014 19:46

I think the treatment section is by far going to be the hardest to organize. How about let's start by figuring out what info we need to collect for each treatment? Then maybe that'll help us decide how to ask it.

Good lyme treatments tend to be very complicated (for those with chronic lyme anyways) and are very personalized depending on your infections, your underlying medical conditions and how your own genetics/body responds to them. Also, some of us have been on varying rounds of treatment at different periods, and some things were phased in and out overlapping with other stuff.

For example, what I mean by that is when I first was bitten I was given a typical IDSA round of doxy. It did make me herx and then feel better, but then the lyme came back. There was a gap of over a year before I was put on abx again. After that I went through a few rounds of mono abx that helped keep me from getting worse, but I wasn't getting better. When I finally got into an LLMD who put me on combo abx and herbs in parallel, that's when I got better. I'm not even sure how I would ask myself how to sort out the pile of stuff that worked. We did the last part in a stepwise manner, so we'd only change one thing at a time so we'd know if the new thing helped or hurt or did nothing, but they all overlapped some.

I think I would go about it like this, maybe in a branched survey to start:
1) What did you try?
Have them check off every treatment they have tried.
That becomes their List of items for further questioning.
2) When did you take it?
Have them list the times they have tried each thing.
Each incidence of them trying it becomes a branch of the List.
Taking things at different stages of the illness could have different effects.
3) How much did you take?
Get the max dose of each treatment incidence.
4) How long did you take it?
Get the duration of each treatment incidence.
5) Was it effective?
For each treatment incidence did it ultimately help, hurt, do nothing, or I'm not sure.
6) Was it in combo with other things?
For each treatment incidence, have them check off what other things they took at the same time.
7) Did any of treatment List incidences make you herx?
For each treatment incidence choose:
Yes, and ultimate subsided.
Yes, and kept herxing.
No, no herx.
8) Did any of the List cause side effects?
Have them check off side effects form lost for each incidence of treatment type.

Anything else we need to know about each treatment? Cost questions?

Now I guess you could lump all the treatment types in one big list or you could repeat this series of questions (in chart branched or however you want) for the different sub types of treatment, like mono abx, combo abx, herbal, supplements, and non-traditional.

On a side note, we need another section to ask about what other medical conditions they person has conjointly along with Lyme, if any. The proverbial how many nails do you have in your foot?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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