I've been working on writing this guide for about 3 years now and still have not finished it. There are key components that I need help with.
I have created a table of content that will hopefully allow patients to click on the topic of interest, and will then bring them down the article to the very data they are seeking.
Think of it like an Encyclopedia of the Lyme Disease community. Betty G formely a member of Lymenet was the one responsible for the original drafts and compiling of a good portion of information in this guide. I'd like to mention that so that others understand the amount of work she put into it during the years she worked on the original guide.
If anyone would be willing to provide assistance please do so in this thread.
My primary issues at the moment are:
1: It's on Microsoft Word. I'll need to find away to ensure everyone has access to it by transfering it effectively into a "reader" that doesn't force me to re-do the entire project.
2: The data is from 2008, and new information has come along since. Updates will be required for all topics pertinent
3: Size of Text will need to be adjusted, but I'd like the "reader" program to allow them to adjust that for themselves.
4: I must finish "hyperlinking" the table of contents, making it so that people can press a link in the contents section and it will immediately scroll down automatically to the topic of interest.
5: I then must list the page in the table of contents, just in case people want to go to a particular page to read the data.
6: I need new up to date sections on new supplements, alternative protocols, and new "issues" that Lyme patients face today. Think about it for a second and you'll realize that issues like "Under Our Skin, and Cure Unknown" could be included. A brief summary would be written about the book, and link would be included to where the person could buy the book. These are the types of updates needed. There are probably 50-100 of different topics that need to be addressed, so just pick one and I'll tell you whether we need it, and answer any of your questions.
These are the present obstacles to finishing this.
Feel free to download and review the document yourself if you'd like to take part in this project.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I realize this project can seem overwhelming, so it is my hope that each person will pick something they understand well, and describe it in detail, or research it and provide references to where they gathered the data.
Personal experience is fine as long as the data is accurate.
As Chiquita asked: I want specific herbal "protocols" as well as specific herbs, and supplements. I also want included are doses, duration of therapy, and combination of therapies to include.
I do not check with online authors who post openly on web forums or professionals who have given advice openly, I merely give credit. Since this data is not-for-profit, it is only educational.
Most of the material is re-written if it comes from a source that is adamant about not having their "words" used. I may delete the material too, that isn't uncommon either, since the issue may not be essential. If the material comes from a specific book, or other resource that you "pay" for, then we don't use that source at all without re-writing the "core data". There are plenty of free sources, so don't worry about this issue.
So, for example here are some ways that I have setup certain sections of the guide. This will help you to organize your particular section
You do not have to read this, just scan over the way it's organized and a little about what material is useful to include
This particular section describes the CD57 Test:
CD 57 TEST/EXPLANATION -- PUBLIC HEALTH ALERT (2006, page 8)
Summary: CD-57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or CD-4 cell counts checked on a regular basis. Current information suggests that there is a similar population of NK (natural killer) cells called CD-57 cells that are known only to be suppressed in the presence of Lyme disease. Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease. Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active. A normal test result would be > 200. It is my opinion that treatment is necessary until the CD-57 test score is 150 or above. The lower the result, the more likely a relapse if treatment is terminated.
The test can be an indication of progression of disease or of progress in treatment. However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels. For now, it is my opinion, that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.If your physician or lab has questions about this test, they can call LabCorp a 510-635-4555 If you live near a LabCorp collection site, bring a lab slip from your physician. The physician needs to indicate the diagnosis (ICD-9 for Lyme: 088.81), the test procedure code AND description Ask for LabCorp Test # 505026, HNK (CD57) panel. If you don�t have access to a collection site and your physician doesn�t work with Labcorp, ask your physician or the office staff to order a Test Kit from Labcorp. You then can have your physicians office draw the blood, or try to find a local blood draw clinic.
Summary: Use rxlist.com and drugdigest.com to quickly reference information on various drugs you may be considering or are taking. It is also wise to consult with your local pharmacy staff. Below is a link providing the experience of a patient who had a drug interaction, and the process she went through learning how to prevent another drug interaction from occurring. Her local pharmacy was helpful. It is important for patients to check more than one source before using a medication, as even the most credible sources can make mistakes and miss something.
Summary: Patient with Lyme Disease face identical obstacles when having surgery. These suggestions will help a patient recover faster and less painfully. A brief overview in the link below includes: Request a soft neck collar and minimize neck hyperextension, intravenous arm should be left on the side, near the patients body. Pre-operative pain medication (Opiods) should be administered 90 minutes before procedure. Request a long-acting local anesthetic infiltrated into your incision during the procedure. Post operative pain medication must be administered for a longer period of time in Lyme and Fibromyalgia patients. Request additional monitoring and treatment. Request a longer duration of post-operative convalescence, including physical therapy if needed. Further information is available in the link below.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
As you can see, these are three or four separate topics.
The topic you choose to update, such as Alternative Therapies doesn't have to include every single alternative therapy in the world.
You could for example talk about the Burhner protocol, and the herbs used, the combination, etc and then find a link to more information about it, or write up a general summary based on information you search.
Each person doesn't have to do EVERY single protocol. Just pick a few things that you know something about and that you think others would want to know. Explain it as though you were telling someone for the first time how it works, basically, and what it is.
Also remember that you don't have to re-create the wheel. A lot of "threads" on Lymenet have already been written about this topics. The goal to take some of the information and answers from those posts, write a summary, link to that "thread" and that's about it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by djf2005: Pekana drainage kit: detox
Magnesium needed generally
Nattokinase/Serrepeptase/Lubbrokinase: enzyme for hypercoagulation
Protein: needed for the healing and production of healthy cells
ACZ Nano spray: metal detox
That's about all Im currently taking..
Now as an example, Derek here could focus on only Pekana, and he could explain which products are included individually in the package, how much one should use initially and then finally build up to. He would explain how each item treats each particular body system, such as Kidney, Liver, and Lymphatic system. He could then provide a link to the website that explains each herb included in each of the three detox products. This would allow him to write a summary, include facts and then link the individual directly to Indepth sources.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Quick note to those who have downloaded the file. A request has come in regarding one particular section of the guide -- nothing big, but you must delete the original file and re-download the file again from the same link as the original. It's located in my first post.
Be aware that since this project is not finished that these requests to re-download will be requested again most likely.
Whatever changes you make to create your own section, only send me the raw data by PM. I can piece it together from there. That way we don't have to pass the entire file around.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Pekana drainage kit is a homepathic remedy set produced by a company called Bioresource. These are drainage remedies aimed at the detoxification of the body's organs and systems.
The kit includes:
Apo Hepat Itires Renelix
Apo-Hepat is designed to detoxify the liver and gallbladder. It is generally well tolerated and is useful for those with elevated liver enzymes for example.
Itires is a remedy aimed at supporting the detoxification of the lymphatic system, and is also generally well tolerated.
Renelix is the third and last remedy in the kit and is designed to help the kidneys detoxify properly.
The full dosage of these products is 15-20 drops per remedy, 3x daily. Although, it is highly recommended that one works up slowly to the full dosage, starting w/ just 1-3 drops 1-3x daily of each remedy until they are generally well tolerated. A very toxic individual will possibly experience worsening of symptoms temporarily as the remedies stir up toxins as they allow one's detoxification systems to begin to work properly.
The above link is the cheapest source for Pekana I and Mike have been able to find. It's free shipping over 100$ and their service is excellent. The password needed for placing orders is "Health".
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Seems like Adobe would be the correct program to do make a book in... who has a paid version of Adobe?
Have you thought about making it a web page?
Or a wiki?
Or do you want it to be printable?
I downloaded it and will give it a read.
I'll chime in if I see something I can help with.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I have read sooooooo many of your posts, and many others here. What we have are a lot of human textbooks, references and storytellers at your/our disposal!!! I have learned sooooooo much, but still feel clueless (hence my name) about so much of it. Still really a newbie!!
I totally believe that you will gain support for your initiative- it's wonderful! I will download and read, but don't think will be able to contribute much at this point!
Good luck MB! and others!!!
Clueless
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Alright, Derek and all. I'm taking Derek's material now and organizing it in the manor in which it will show up on the list:
Alternative Protocols
Pekena Detoxification Kit
Summary: Pekana drainage kit is a homepathic remedy set produced by a company called Bioresource. These are drainage remedies aimed at the detoxification of the body's organs and systems. The kit includes: Apo Hepat, Itires, Renelix. The full dosage of these products is 15-20 drops per remedy, 3x daily. Although, it is highly recommended that one works up slowly to the full dosage, starting w/ just 1-3 drops 1-3x daily of each remedy until they are generally well tolerated. A very toxic individual will possibly experience worsening of symptoms temporarily as the remedies stir up toxins as they allow one's detoxification systems to begin to work properly. -
1: Apo-Hepat is designed to detoxify the liver and gallbladder. It is generally well tolerated and is useful for those with elevated liver enzymes for example. -
2: Itires is a remedy aimed at supporting the detoxification of the lymphatic system, and is also generally well tolerated. -
3: Renelix is the third and last remedy in the kit and is designed to help the kidneys detoxify properly.
Note: The link below appears to be source for Pekana that I've been able to find. It's free shipping over 50U.S. dollars and their service is excellent. The password needed for placing orders is "Health" in order to get an automatic 10% discount.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by momlyme: Seems like Adobe would be the correct program to do make a book in... who has a paid version of Adobe?
Have you thought about making it a web page?
Or a wiki?
Or do you want it to be printable?
I downloaded it and will give it a read.
I'll chime in if I see something I can help with.
Whoever decides to organize this part of the project will have their work cut out for them. Maintaining the same sense of order and condensed material will be key.
It should be accessible to all, printable, and available here on Lymenet, as that is the group it was created for. While it can be used for any other website, the primary material will always lead back to Lymenet.
Here are some additional topics I need written about:
Carpeting and Fire: Decreasing the odor.
Ticks, fleas, mosquitoes, mice, rabbits, birds, mouth, by pregnancy
Links to Lyme & Tick LDA Brochures
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I don't have Microsoft Word so I was unable to download and read the file.
Is there some small way I can help?
I don't know anything about carpet and decreasing odors. Someone with MCS might really help here.
Not sure what you are asking for with the bugs and animals?
Someone who has been pregnant with Lyme would be a good reference for that topic.
And I'm not sure if I've ever seen an LDA brochure.
I have experience treating with oral, IM and IV antibiotics. I've also been on many herbs and supplements. I've done HBOT and acupuncture. Do you need any help with this stuff?
Posts: 5237 | From here | Registered: Nov 2007
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MB - I would be happy to help with the technical parts of your project once its complete.
This would consist of converting word to probably adobe. You would not have to re-do entire project. pdf format would ensure anyone who didn't have the money to own Microsoft's Office Suite could enjoy also.
This would also allow them to change font size on the fly to suit their needs.
Keep me in the loop Fuel
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I did a "book review" of Cure Unknown explaining the politics behind the CDC's refusal to acknowledge chronic widespread lyme disease. It is concise but not short. It is on the other computer (hopefully my husband did not delete it in one of his "cleaning" rampages).
I will try to find get it sent to you and you can do with it what you want. I was intending to use it to educate people but just never got around to it myself.
What you are doing is much needed. Your explanation of the CD 57 test is very helpful. I can read something many times and forget it repeatedly so I would really appreciate a site where I can access information over and over.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
If you need a French-speaking overseas correspondent Yankee, I could help! (sorry, I couldn't help myself)
You guys are amazing!!!
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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METALLlC BLUE
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Member # 6628
posted
This is exactly what I need. I need people who specialize in specific areas, or who know specifics about treatment methodology that they have strong experience in.
However, I also can use anyone who is willing to do research on a specific area that is needed, but isn't covered in the guide. If you are uneducated, but currently studying a certain subject, you too can be incredibly helpful, since you're already motivated by self interest to learn as much as you can for your own treatment.
When I began this project, in some sense I was reinventing the wheel. Many other places have resources like this -- it's just not organized like this, and it's not in one single source. Most places provide links but do not provide adequate summaries to give a "good" condensed understanding of the issue at hand.
Clicking a link for a thousand webpages is overwhelming, but being able to read a guide almost like it were a book can educate sufficiently to allow a patient to then feel compelled to dive deeper into "specific areas." They will know "Ok, I read about all this stuff, and now if I really want the "deep" details, I know exactly where to find them, and the sources I go to will be credible."
I "was not" thinking about patients with cognitive problems, difficulty understanding, or reading when I designed this setup. I felt this could be teased apart later during the process. I did however to try to use different "learning techniques" such as those used in educational text books: providing pictures, or small boxes with "chunks" of core information. I tried to use graphs to make it easy to find and understand antibiotics, symptoms, and different illnesses associated with our health issues.
Another example of ergonomics is the ability to read the content page and instantly click the subject and it brings you right to the page in the guide. This is an uncommon feature, and trust me, a very tedious one to setup, even in Microsoft word. Time consuming! So, if we can create and keep the very same user-friendly features and add others that help even more, I will be incredibly pleased.
More work remains to be done, but today I'm to tired to do very much with you guys. I likely won't ask for more help personally until tomorrow - or another day when I am not so busy. Today I do my rife session plus have to clean house, and still workout. Exhausting.
So, for those who feel ready to start their own "individual" component of the project, feel free. Most of you already have written up directions or posts at some point that cover the core summary of your data that you specialize in, such as Dan Bergy. Extract the essence into a summary of about a paragraph or two long, and provide a link to the Lymenet Rife thread, as well as my Rife Frequency List, and your section would be complete. If you wish to write a longer section, feel free. I will decide what I will use and what I will not -- but, make sure whatever you do use also exists on a "Lymenet Thread" or another internet site that is easily accessible. This way, if I cut details, they will still be available to the person who reads the guide and uses a link. If details exist in a "specific post" in a specific thread, then give me the link to that one post you made in the larger thread and that will be included in the links below the summary. Specific posts in larger threads are sometimes most relevant. As an example: One would find reading the entire Lyme/Rife thread overwhelming, but if Dan were to cover the technical aspects of using the GB4000 (A device used for therapy), then one post would be far more easier to read.
For the person who said they'd help me do a conversion to Adobe, that is exactly what I want. However, I'd like the original "organization style" of the document to remain in-tact or built upon with an even more refined system. I want order. I want "easy" to read, easy to understand. I want "colors" used to indicate key data. The mind works and learns best using all known techniques. Since we'll be dealing with people who are mentally ill and often times cognitively limited by their illness, we must take into account their needs with the final version.
I want this to be the most ergonomic, user friendly, information packed guide on the internet, and I want it to be "our" project. This is to be the very best and latest information that we and the medical community have to offer. I want every section written to also give credit to any of you who organize that section by having your name applied somewhere in your section.
For everyone else wondering what they can do:
If something important isn't mentioned in the contents page, then that will tell you what is missing. It will stand out to each person and you'll go "A-ha, we need that too." Alright?
So, get started. If anyone has questions, wants constructive criticism on their particular work, please contact me. I'll start looking at PM's on this subject in a few days.
I'm educated on 90% + of all topics that the Lyme Community deals, but only superficially enough to know what I do and don't know - and this gives me the ability to find information or recognize when something is detailed enough or lacking. You may find in the guide sections that I have written summaries which you feel could be addressed more indepth or better explained -- if so, please do and we'll incorporate it.
Enough of my rambling here, I think that as a community we all deserve the very best guide -- not only for newcomers, but for even people like myself who don't understand the depth of many subjects.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I want to add a note here in case people miss it in the first post. Betty G is responsible for having compiled a good portion of the information that originally made up the original document. She worked exceedingly hard for quite a long time and so I want to credit her. I am merely standing on the shoulders of her work, so with that, thank you Betty.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Update: I finished all the Hyperlinks. Ok I found a way so that people without Word can still view the file in Word. Simply download the Word File Viewer in the link below, then download the actual file.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
That's really great that you have done this, MB.
I took a quick look & didn't notice any info about Bionic 880, PE-1, LightWorks, etc. Also, use of dowsing, tensor, ART, applied kineseology & "energy medicine", nosodes, homeopathic combined with light & parasites.
I may have just missed it. I can't volunteer to help you right now. I have too much on my plate at the moment. I'm just making some quick suggestions.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Congratulations, and thank you for organizing all this. I love the fact that you cite all your data, although I think citing a thread on this website is a bit tacky, at least when you can find a study or paper to cite instead.
I'm a bit too tired right now to read most of it, but I have a couple suggestions at the moment.
1) If anyone is able to contact Keebler, I think that she had a lot of information stored on her computer that she would post here... links on every topic under the sun, etc. Would her saved information be of any use?
2) I would really advocate for distributing it in an open format, either .pdf or on the web in HTML. If you decide to look into this, I'm willing to assist or even host a website if Lymenet's servers don't have the space.
I could even see this being a wiki, but you would need to address many disputes about the content beforehand.
For example, take sparkle's post above mine.
Are you going to include information about alternative therapies in the guide? What qualifies for being included?
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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METALLlC BLUE
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METALLlC BLUE
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quote:Originally posted by 5vforest: METALLIC,
Congratulations, and thank you for organizing all this. I love the fact that you cite all your data, although I think citing a thread on this website is a bit tacky, at least when you can find a study or paper to cite instead.
I'm a bit too tired right now to read most of it, but I have a couple suggestions at the moment.
1) If anyone is able to contact Keebler, I think that she had a lot of information stored on her computer that she would post here... links on every topic under the sun, etc. Would her saved information be of any use?
2) I would really advocate for distributing it in an open format, either .pdf or on the web in HTML. If you decide to look into this, I'm willing to assist or even host a website if Lymenet's servers don't have the space.
I could even see this being a wiki, but you would need to address many disputes about the content beforehand.
For example, take sparkle's post above mine.
Are you going to include information about alternative therapies in the guide? What qualifies for being included?
Keebler was unable to help me when I discussed the issue with her a short while back.
The document is not meant to be "Scientific" it is merely a guide to the community. Generally any question or issue that is discussed here would be included in the guide. The guide is merely meant to show the person that these topics exist in an organized format. Knowing these exist means the person can investigate the issue further. The links allow them to review the issue further, but then they can take it a step even further by using the search feature here on Lymenet, which is also included in the document.
As far as debate over what will and won't be included -- there won't be any. The guide isn't meant to tell people what to do, it is only to show people what is available in the community -- everything from Alternative therapies, to books, to DVD's on the LDA website.
So, all information will be included when it can be.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
5vforest - is you comment meant to be an insult to me? I hope not...
I've been observing people's therapies here for a long time. There are cures to at least several people who have posted here from the therapies I listed. Yes, actual cures...
If I have time, I would like to write somthing for you, MB. Is there a time limit to when you want things by?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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METALLlC BLUE
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Nope, no time line.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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