Your 2cents re: top 10 things the public should know about Lyme

Here are some of my thoughts about it. As a mom with a son who has lyme I find I want to tell every mother I know lately to:
check for ticks (although I know they aren't always seen b/c of size)
and that if their child starts having symptoms that don't seem usual, to look into it. (For example, juvenile rheumatoid arthritis is rare from what I understand (yet lyme's not), so if there child is having elbow pain, and then knee pain and then shoulder pain and then toe pain, etc. Look into it. and so one with other symptoms)

so, here's what I'd say:
they should know it's not rare.
they should know the symptoms
they should know that they need to see a doctor who knows how to dx and treat lyme
they should know that the tests (I mean the Elisa and CDC Western Blot) are unreliable.

those are some things I think of.

Ladies thank you both!
Isn't it funny how we see ourselves as wanting to blurt out all that is true about Lyme disease. It's almost as if we were chosen strategically as survivors and because we have such heart to want to shone the light on this mess---

Love to you both, Sarah

The treatment and recovery is different for everyone.
Treatment should continue beyond the resolution of symptoms.
While antibiotic treatment has its risks, it is far preferable to the damage caused by the disease.
The combination of Lyme with other Tick borne disease makes treatment and recovery much more difficult.
Tick borne diseases are no reason to stop enjoying the outdoors (consider all the other risky things we do without even giving it a thought).
All the medicine in the world won't guarantee recovery, it takes spirit, support and a lot of hard work.

Hi Yogi,

I could think of about 8 things... I think the #1 thing is the testing. If the medical community could at least properly test for it, they could treat it much better. And there should also be a 'done test', so it can get rid of this debate of whether or not Lyme can become chronic.

8. Treatments typically require conventional and non-conventional means and requires a great effort on the patients part.
7. The number of people being afflicted by this illness is actually very high.
6. Lyme treatments are currently not accepted by the general Lyme community.
5. Long term antibiotics are far less harmful than Lyme disease itself. Doctors should not be punished for prescribing them and insurance companies should support this to make it more affordable.
4. There are other means of contracting Lyme disease, not just from tick bites.
3. It is very difficult to get rid of.
2. A typical 30 day course of antibiotics is often not enough to resolve Lyme disease.

and the # 1 thing that the general public should know:

1. The testing is not accurate!

For it guys-- thanks !! Will compile when I have some spare time..

1. Borreliosis (aka Lyme, STARI) is easy to catch...there are many vectors, not just one or two species of tick...and no, the tick does not have to be attached for more than 24 hours to transmit Lyme (some have gotten Lyme from a tick only attached for an hour)...and Lyme is transmitted via placenta & breastmilk, and may be sexually transmitted.

2. Tests are terribly inaccurate...there is no way to prove 100% without a doubt whether someone has an active Lyme infection or not, or whether they have been cured. A negative test does NOT rule out Lyme.

3. Most doctors are not properly educated on how to diagnose or treat Lyme...thus, a Lyme-Literate practitioner must be consulted for proper diagnosis & treatment.

4. Lyme seldom comes by itself - coinfections are common with Lyme...and can include Babesia, Bartonella, Anaplasma, Ehrlichia, Mycoplasma, Rocky Mtn Spotted Fever, and many other bacteria, parasites, viruses, and probably fungi also...

5. Lyme symptoms can mimic over 300 diseases...and each case of Lyme is as unique as the individual who has the infection...

6. Treatment must continue until all symptoms have been gone for at least 2 months...

7. Getting Lyme once does not confer immunity against future infection with Lyme...

8. Lyme treatment involves a complete lifestyle change, not just a few pills to take...

9. There is no 1-size-fits-all treatment for Lyme - every case will have a different mix of coinfections, genetic & epigenetic issues, environment, etc. and thus treatment must be customized to the individual.

10. Don't give up if you get diagnosed with Lyme - it is treatable...it just takes a lot of work.