posted
I am suggesting a progress forum be added to the forum to track progress of health and updates to new treatments. Just another way to keep a diary that all participants on LymeNet could use to track their own treatment journeys, or track others if they choose to do so.
Example:
[Protocol: ABX, Herbs, Supplements]
[DX: Lyme, Babesia]
[Day 3: Azithromycin + Samento]
3rd day on Azithromycin, and I want to puke! I hope Samento works.
I'm aware their would need to be some rules applied when it comes to discretion about doctors and dosages. Hopefully, if that could be worked out, I think it would be great for us. Especially when new ABX or herbs get touted for being successful, we can read the progress of people trying it.
Let's do it!
Posts: 829 | From MD | Registered: Dec 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
A good idea. A thread could be started in the mean time.
I have been on biaxin since 2008 I think. When I am able to be on biaxin and amoxy my health level improves.
On biaxin because it is what the primary doc will presribe. Wtg to see if he will do a refill.
Last I saw him he said no more biaxin. He is concerned about insurance calling him on the carpet for long term abx.
When I go off of abx all together barely functioning. not good.
Not seeing a LLMD currently due to lack of funds and health to get there. Once there, don't have the out of pocket money to get abx adn other things suggested.
But, am slowly seeing improvement through the years. Doing what I can with what I have.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I would be willing to moderate.... if enough agree that it is a good addition to the forum.
I for one think it is a great idea.
Perhaps everyone could have their own thread and just add to it... then we can check up on people and they can check out (so to speak) when they are cured.
-------------------- 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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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Maybe i am misunderstanding the idea, but posting meds and doseages Are not a good idea.
Posts: 3905 | From USA | Registered: May 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
No meds and dosages... progress.
-------------------- 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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posted
Posting about progress without the meds that helped is rather useless. Well, if your goal is to get some pats on the back then it's useful, but for anyone looking to compare treatment plans, etc. it would be of no help.
And while we're suggesting new sections for the board, I'd like to advocate for an "alternative treatment" subforum, where the "earthing", Rife and the like could go.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I think that this whole board is an update on how everyone is doing. If you cant really say how youre getting better by saying what you are on and your dose, it doesnt make sense to me. Just my opinion.
Posts: 3905 | From USA | Registered: May 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Dosages are against the rules... meds and treatments are not.
-------------------- 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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posted
Glad I have some support on this. Thanks for offering to moderate, momlyme.
And, I like where the direction is going. My hope is that this will encourage people to share more details about their symptoms, ups and downs, side effects, duration of treatment. Things that will be a real source of information if you were to do a search for Samento, and find a "mission" of someone's detailed trial using the herb.
I can't possibly imagine how this couldn't help people. Just looked how clogged boards get with questions like, "How did you do on Samento?"
Hopefully the future response can be, "Search the board for Samento Wolfed_Out. He detailed his trial for 3 months using it on the progress board."
I also think it gives those of us who are very active in finding new solutions a way to see what others are doing and try new things. Comment on each other's thread -- almost like a blog for the board.
Hopefully someone likes it enough to let this happen.
Posts: 829 | From MD | Registered: Dec 2009
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Aside from the occasional progress update post, I don't see people encouraged enough to write posts dedicated to tracking progress on the medical questions board.
I think if a section was dedicated to progress reports, we may hear a lot more success stories through treatment.
It's kind of common place for people to come ask questions about the medication on the board, but how often do we read a post like, "I've been on Rifampin for 3 months, this is how I'm doing." I think it's simply because there's no place for it.
In the end, we have 90% questions that have been asked before, and short-responses about the experience. I can only imagine if someone was given a place to write a progress report, these experiences might be filled with more detailed information.
I see you have blog. I don't personally. Maybe I should get one. That's kind of the impact I was suggesting. A blog progress report section, right here on LymeNet. A blog for a thread about a treatment plan and progress.
Posts: 829 | From MD | Registered: Dec 2009
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