posted
i came here and i was excited to meet and learn about lyme, i got really good information and links to read and educated myself, which is a hand full,
i would at this time would like a link to the ny lyme yahoo board.
kitty and tutu, i appreciate the help you were trying to give me. along with a few others.
if anyone has a link to the ny yahoo lyme board, i would appreciate that link.... thanks guys
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You can find nearly any link you want with a Google search.
I've read all your threads and am sorry that you have gotten the impression that people are not friendly. If it's because they suggested that each patient has to read lots to learn, it is true. No one can answer all the questions or explain in great detail.
Many people have spent a great amount of time answering your questions - posting links so you can read more - and then finally had to request that your threads be consolidated as there were so many that the answers did not flow from one to the other and they could not repeat the answers at the rate the different threads with similar questions were popping up.
It was to keep it all straight and not be so hard on those offering their time to help. I saw no one bullying you but only asking you to keep in mind your demands and offer respect to the posters.
Still, if you want a different site, just search at Google and you should find what you want. Your local lyme support group would have to invite you to join the Yahoo board so if you contact them first you'll get instructions on how to sign on.
That link to your support group was with one of those you posted in the past few days.
Good luck in your treatment path. I hope you find what you need. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am so very sorry you feel this way. i try to respond to a lot of the posts and can't remember if i've responded to your posts or not. if not, i apologize.
been going through some stuff myself.
please don't judge this board by what happens periodically.
we are after all, human, and more so than the rest of humanity, because of our illness.
i have not been on the receiving end of some of this stuff so i won't address that perspective, but only say you must do what is right for you.
this board has been a lifesaver and each one has contributed much to my care. i love them all.
again, sorry you feel this way.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I'm sorry you feel that you were disrespected here.
I answered the same question twice on two different threads of yours and then you started another thread asking the very same question, a third time.
I like to try to help when I can but my energy is limited. I think it is important for you to remember that we are sick, too!!
We have all had to do our own "homework" to try to understand this crazy disease.
It is very easy to do a "search" on this website to get answers to many of your questions.
Please learn all that you can here to make the most of your llmd appointments. Remember, many questions can only be answered by him or her.
Good luck!!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As joalo says, you can do a search and find many answers to frequently asked questions.
If the same question is asked and answered over and over in duplicate threads, and the answers are seemingly not read, those who reply can start to feel disrespected, too. That seems to be what happened. Usually, people are very eager and happy to help but they have their limits, understandably, as this leaves everyone fatigued and with brain-fog.
Here's the link for the search feature here at LymeNet for past threads:
I have been taking some time off the board for a couple of weeks so I have no idea what went on. But from logging on today I can see that lots of the usual posters are missing in action -- due to the holidays the number of posts is way below the usual.
If you stick around or come back in a couple of weeks I think you would probably find many more responses to any new questions you post.
Whatever you decide, best wishes and happy holidays.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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julielynne4
Unregistered
posted
I don't have a clue as to what happened or your reasons for wanting a new board. However, as I tell my students and my own children, it is naive to think that if you just go somewhere else, that you will avoid problems.
No matter where you go to work, school, church, shopping, internet forums...every single place will have confrontations of some sort, since every single place has people.
I hope you can find peace no matter where you are, and know that there are many people here who will spend much time and energy helping you. (I know this because I have read many of their posts, and because I also ask for help.)
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I can honestly tell you that this is probably the best board you will find, because it gets way more "hits" than any other Lyme board.
There are just so many people on here! There is strength just in sheer numbers.
Sometimes my questions don't get answered either...yes, it is frustrating, but this is the best board around.
Even if you get half your questions answered, it's still worth it, in my opinion.
There are some great people here, but they are also sick, and they aren't on here all the time.
Whatever you choose, Good luck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 05-04-2010, 01:56 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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julielynne4
Unregistered
posted
In addition...I have looked at other forums but none that are this helpful. Even before posting a thread, chances are I can do a search on the topic I need and spend hours reading already-posted info. Truly a blessing.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Perhaps the vacuum is that you may not have received a "welcome set" of links when you first posted - or did not find exactly the right thread for a progressive order of links to start you off on this journey. Believe me, I know you said you don't really want to read but the links people post for you are gifts of gold.
Most of us had nothing to guide when we first go sick. As mentioned in another thread of yours, your local support group can be enormously supportive so be sure to contact them.
To complement the good links posted by OptiMisTick, so that they'll be together for your reference ease - here are the links I posted at another thread of yours.
If you copy and paste links people give you into one file on your desktop that will make it easier to work through them or sort out what you need from time to time.
=======================
Here is a basic starter list of articles or books that will serve you well and answer many questions. You might copy and paste to your file for quick reference:
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- About the film, if funds are tight, see if your local support group or your library has it. The library could also order on inter-library loan from another library anywhere in the U.S. - however, the waiting list can be very long.
About the books: also some support groups can loan out - or see if your library has them or will order them.
First, though, if you have an appt. soon with a LLMD, I'd just read up on the self-care "rules" & supplement suggestions and get going on those and then let the LLMD sort this all out. I had forgotten to include that in the above set, so here you go.
As you will see, lyme treatment is NOT the same for the viruses you have. However, if you have lyme, that needs to be on the tip top of the list to treat. Most LLMDs also know how to treat the other things you mentioned, but be sure of that when you schedule with the LLMD.
The self-care and supplement sections are good for everyone regardless.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008)
Four pages
====================== ======================
Excerpts from Burrascano's work regarding self-care:
From page 27:
CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired.
2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps.
3. Absolutely no alcohol!
4. No smoking at all.
5. Aggressive exercises are required and should be initiated as soon as possible. [Note: NO aerobic exercise, though. See below.]
6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and
carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index.
7. Certain key nutritional supplements should be added.
8. COMPLIANCE! -------------
and also on pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.
No aerobics are allowed but other suggestions are included.
===================
More great suggestions regarding nutrition are in the Singleton book. Especially, avoid ALL artificial sweeteners. Aspartame/Nutratsweet/Equal or MSG (Google for all its names) are very toxic to the brain can create many of the same symptoms as lyme itself.
As well, a gluten-free diet can help not just the stomach pain but also body pain and brain fog. You can learn more about that at www.celiac.com You might be able to see a difference in even a week's time by eliminating wheat, rye and barley.
This sounds like a lot of work but the benefits can be huge. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well... did street read any of these great suggestions??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
quote:Originally posted by Lymetoo: Well... did street read any of these great suggestions??
I was wondering the same thing...
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
Am I the only one who finds it odd to turn to a board you say isn't helping you, to ask them for help in finding a board to help you? Just sayin'.....
Posts: 374 | From United States | Registered: Nov 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah it is funny.
but let's see -- there's lyme friends and mdjunction lyme, and healthboards.
if you just type lyme message boards, you'll find a lot of stuff. just got to get one that "agrees" with ya i guess.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I have participated in several other lyme boards and I can assure you this is simply the finest. Holidays are tough, and this time of year is very difficult of Lyme victims.
Really google is the best tool ever, and answering your own questions is often best. You can't simply expect everyone to do all the leg work for you.
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