posted
I've been brainstorming keywords for a website/youtube vids' I'm working on. It's main function is to IMPLORE people to get tested and retested for lyme. I can use up to 230 words. Any help would be greatly appreciated. Here's the barebones of what I have so far.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Personally, I don't think it's a good idea to suggest testing alone. Most tests are just crap. Most doctors will not order the right tests and most labs do most of their tests wrong, anyway.
I think a in-person assessment is most important and then the experienced LLMD can direct them to testing.
There is a better test that has just become available but, even that, is not fail proof.
One danger with just telling people to get tested is that when it comes back CDC negative (as it likely will no matter what) they can have a false sense of security.
There are many strains of lyme that don't even have tests.
EVALUATION, ASSESSMENT for lyme requires much more than testing - and testing that is very specific.
Testing also does not work on brand new cases.
What about directing them to: -----------------------------------------
27 REASONS WHY A SERONEGATIVE LYME TEST RESULT MIGHT OCCUR
------------
You won't have to reinvent the wheel as they have all the information there. You can look around those sites to find certain links and also post those. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good for you! I love to see advocacy!
Not to be persnickety or nothin' ... but you may want to change:
ILAD to ILADS
Igenenex to IGeneX
``````````````````````````````````````````
How about...
Depression
Obsessive Compulsive Disorder
ALS
Parkinson's
Autism
Tick
Toxins
Children
Arthritis
Fever
Joint Pain
NIH
Doxycycline
```````````````````````````````````
May I also suggest (?)...
Since 75% of people with Lyme do not test positive, according to Hopkins blood test study (2005), you may want to suggest to not give up if a person gets a negative test. Lyme is a "clinical diagnosis" and a negative test is never to be used to rule out Lyme disease.
And maybe suggest people should seek help from a doctor who has been recommended by a patient or support group.
Keebler, you are soooo right..I'm bias I guess because mine were positive off the bat, of course not to CDC standards. Great links, I will add them all. On my vid's, I explain that exact problem. Testing inaccuracy, and how important it is to get tested through an ILADS trained dr. or LLMD. I'm mostly going after people who have been dx w/ Fibro and CFS who want aren't getting better. I truly believe that the number of chr.lyme sufferers is grossly understated. Thanks too Tin...
Posts: 147 | From youngstown | Registered: Oct 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i don't suppose to want any very colorful terms do ya??? lol
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's important to remember that not all chronic illness is due to lyme. Of course, it's vital to consider lyme but there are other chronic stealth infections, too. Most good LLMDs also know about all that, but not necessarily.
And, there are certain nutritional deficiencies or system dysfunctions that can confuse the picture. A key example is magnesium deficiency and also lack of certain vitamins.
Aspartame and MSG toxicity can also look just like lyme symptoms.
This link is in the "Diagnosing Lyme" thread, listed in that set above. It's very important that people know what all else to consider.
I would encourage EVERY person who has received a Lyme diagnosis to get the following tests. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tincup just posted this at another thread. Scroll all the way to the end for that new test I mentioned above.
posted
Thank you Keebler, I am trying to get the word out on lyme as much as possible because it has flipped my life around. But I want to be factual. I'm tech savvy, not lyme savvy yet. But I have a passion for it since it's a political disease that I feel can be cured if the right people cared. That means awareness. The only way I possibly can do that now is online. I love your input.
and randi- i made that mistake with my first vid and realized nobody listens to a complainer, or an angry complainer at that. So I'm trying to be as calm and informative as possible from now on.
Posts: 147 | From youngstown | Registered: Oct 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Parasites
Chronic Candida
antiparasitic herbs
salt/c
Digestive Disorders
IBS
Anxiety
Spatial Disorientation
Migraines
Low B/P
Noise Intolerance
Multiple Chemical sensitivity
Tachycardia
Blurred Vision
Immune System Dysfunction
Skin Crawling
Sinus Infections
Jaw Clenching
TMJ
Drooling
Twitching
Hallucinations
Brain lessions
Hashimotos Thyroiditis
Intersitial Cystitis
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Since the testing is so unreliable, it would be good to encourage the clinical diagnosis from a LLMD/LLND. I was reactive on one band, 23 IGM only, so CDC did not view me as having Lyme. I am getting be only because my LLMD knew not to believe the test alone. My family practitioner had no clue, but I just kept researching myself.
Posts: 22 | From North Carolina | Registered: Oct 2011
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posted
Thanks so much. HUGE HELP! I am also suggesting retesting and both ELISA(I know everyone thinks it's worthless but both mine were off the chart positive) & Western Blot. And then taking those results + or - results to a LLMD specialist. The same way you would take a Brain MRI to a Neurologist. Thanks again!
Posts: 147 | From youngstown | Registered: Oct 2011
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I was going to write something fresh, but i restrained myself
Posts: 3905 | From USA | Registered: May 2007
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