I was wondering if those of you who provide so much constuctive advice could post advice directed to the newer members and new visitors.
Whith so much varied information, so many varied treatment options, and so many different symptoms we all suffer:
What would you give the newcomer for advice in sorting through it all? (assuming that newcomer might be be impaired, overwhelmed, confused, uneducated to Lyme and possibly doesnt have a good LLMD yet )
I have used the medical discussion board quite a bit in the relatively few months I have been a member here.
The information, support and advice has been very informative and valuable to me as I fight Lyme disease and "possible" co-infections.
As so many here, my neurologic system/brain were severely impaired when I started on this board. I still am impaired but not to the degree I have been in the past (Thank God!). This is in part due to the advice from members here an Im grateful.
At times I had great difficulty processing the seemingly overwhelming amounts of information, abreviations, and advice due to my cognitive and psychological symptoms. At the time I often didnt even realize my "moth eaten" brain was, in part, the cause of my difficulty.
At one time I even left the board for a while (not the boards fault-my psycholocical issues were way, way out of control ).
This week I will be meeting with my LLMD after having seen a LD specialist, DR K.L., in NY. They are going to be adjusting my meds and looking at a trial babesia treatment due to the set of symptoms persisting (and me persisting due to the advice here).
So, I'll likely be asking some new questions (after using the search option- only took 10 months to finally get this) and dont want to get overwhelmed in sorting them out.
So, to repeat the question here:
Whith so much varied information, so many varied treatment options, and so many different symptoms we all suffer:
What would you give the newcomer for advice in sorting through it all? Maybe some "tricks" from neuro-lymies on not being overwhelmed, choosing what applied to you, etc.)
Please, only constructive advice, no "board bashing" .
Thanks again to everyone who has helped me on this medical board. Your experience (and patience with me) has affected my treatment in a positive way.
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
For a newcomer, I'd recommend printing out the Dr. B guidelines. I practically memorized them, which then helped with sorting through advice on the board.
I have always been "into" alternative health care, so I supplement my treatment with alternative stuff I learned here, but I consider the Dr. B guidelines the basics.
My other advice is really learning about the coinfections. Ends up my neuro symptoms were from bartonella. I tested negative for all coinfections but required treatment for bartonella and babesia.
Other than that, if you have questions about treatment, alternative support options, or what abbreviations mean, ASK!!!! That's what we're here for - to help!
What helped me most in sorting through it with my neuro symptoms was to not read posts that confused me, just read what I understood and rely more on my LLMD. That's why you need one you can trust.
Also, remember that we are not doctors, just people suffering from Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I used Canlyme to narrow down what was wrong with me.
Also printed Dr. B's guidelines prior to finding Lymenet.
My advice is to read a little when you can.
I have been treating for 16 months here and still find new
Or varied information that at times is hard to process.
I printed out of the Newbie info things I thought were of the utmost importance to me
Initially. As time goes by, I still look at it and some of the information.
Sometimes as a reference. Sometimes to learn.
I too, had a great deal of difficulty processing any info.
Hard time reading.
Lymenet was and still is a God send for me due to the spacing of the posts,
And the support and info provided here.
So, as I am rambling on and on.....
I would take it slow....print out the things that you feel you need to know
In the beginning. Scan the board for topics of interest.
Just keep at it. I still am and still gleaning gallons of info a day.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
good question; i agree with many of answers above so i won't duplicate those answers. *******************************************
from what i know NOW vs. coming here, here's what i would stress:
igenex info on western blot igm and igg blood test; i've got detailed info on that in what i send out what needs to be done and by whom; and tincup's link explaining Dr. C's explaination of W.B. blood tests!
preparing for my 1st LLMD, lyme literate md visit questions....
a printed out copy of FINANCIAL BURDENS compiled by Melanie Reber, and which I printed it all out in 20 pages vs. showing link only!
when they learn how expensive the LLMD appts., treatments, and traveling out of state, they need to know on day 1 what OPTIONS ARE AVAILABLE TO HELP YOU GET TREATMENT AND BY WHOM!
the symptoms lists of main players: **********************************
lyme
top 4-6 co-infections:
babsiosa
bartonella
erlichiosa
rocky mt. spotted fever
mycloplasma
last question i'd ask is have they been fired or forced to quit their jobs due to health, and have they applied for SSDI, ss disabilty insurance benefits since there is a deadline involved!
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Find a good LLMD for treating the bugs. Find a good ACAM doctor www.acam.org for healing the body.
For me, both have been the key to success.
While I love reading every treatment modality presented here, I certainly don't follow all of them. That would be way too confusing and expensive.
I love to research and fortunately have not suffered the mental issues like others here. The mental confusion I experienced early on was knocked out swiftly and permanently so far by homeopathy.
Still, I never try anything without running it by my doctors. They keep me on track and grounded.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Well, something else that I do.
I set up folders in my Word program. I have two topic folders 1-Lyme 1-Rheumatoid Arthritis
Within these two folders I have subfolders such as Allopathic Treatments, Alternative Treatments.
Organize it anyway you want and store all good information like a filing cabinet.
I even have a folder called positive stories. Sometimes, I just need to read positive stories of people who have healed themselves from these diseases.
I have another folder titled "important reading". I stick stuff there that I want to read when I have the time.
This helps me keep the information manageable and easy to recall.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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When I want to "follow" a particular post that I have put on the board, interests me or applies to my issues, I used to keep having to search for the post on the list.
This was difficult and often I couldnt find the post/topic easily.
A very easy way to follow the posts that interest you:
When you are viewing the post, click on add to favorites in your web browser,
Create a folder (usualy says "new folder") for Lymenet discussion,
and click to add to favorites.
If you do this, when you want to see if someone has added to your post, or other posts your following,
you just go to the my favorites in your browser, click on the folder and then click the post you want to check for updates
This will bring you automatically to the updated post with no searching needed.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thanks BJK!
I was having difficulty keeping track of posts that I wanted to follow. That's a great tip!!
Laura
Posts: 2541 | From Northeast | Registered: Jan 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
yep I agree...cliff's notes for lyme Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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