This is topic Need "LYME DISEASE MYTHS" list for LLMD speaker in RI, April 28th in forum Medical Questions at LymeNet Flash.


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Posted by luvdogs (Member # 9507) on :
 
Hi all,

Maybe you can help me. For Dr. R's April 28th presentation in Rhode Island, we have decided to start the discussion with a list of "Myths about Lyme".

We are going to give everybody in the audience the list with "true" or "false" next to the myth - so that they can check off before, and then re-evaluate after they hear him speak.

What we need to do is compile a list of all Lyme myths (e.g. always presents with bullseye, testing is always accurate, etc).

Once I get the list, Dr. R will review it. Then he is going to use it as the basis of his Lyme education presentation.

So, maybe we can all do this together. If anybody can think of any myths, please post them here.

Thanks!
 
Posted by AZURE WISH (Member # 804) on :
 
what i can think of right now

must present with joint pain

must have swollen knees

must have positive test

must Remember tick bite

must be a certain kind of tick or no lyme (i know this has happened to someone and she had the bullseye)

that you must live in an endemic (sp?) area to get lyme
 
Posted by Geneal (Member # 10375) on :
 
I have a couple.

It only occurs in the Northeast of the US.

You only need 28 days of antibiotics to erradicate Lyme.

The Elisa is an excellent "screening" tool for Lyme.

I could have put [shake] behind each post.

Hugs,

Geneal
 
Posted by savebabe (Member # 9847) on :
 
Myth- Only dear ticks carry lyme disease.
 
Posted by lymednva (Member # 9098) on :
 
Check out the CDC guidelines for Lyme. That's pretty much one big myth there! [shake]
 
Posted by robi (Member # 5547) on :
 
The tick must be attached 36 hours to transmit Lyme.

Lyme is the only thing transmitted by ticks.
 
Posted by shazdancer (Member # 1436) on :
 
Chronic Lyme is just the "aches and pains of daily living," according to the Infectious Diseases Association's guidelines.
 
Posted by Parisa (Member # 10526) on :
 
"There's no Lyme in __________"

In response to question of why doctors don't belive Lyme patients actually have Lyme: "We really don't know much about the disease."
 
Posted by adamm (Member # 11910) on :
 
The tick must be attached to transmit Lyme.
 
Posted by achey (Member # 6284) on :
 
You can have a bullseye rash and not have lyme.

Lyme doesn't effect behavior.

A spinal tap can easily find lyme.

Lyme disease is easily and quickly cured.
 
Posted by achey (Member # 6284) on :
 
You can have a bullseye rash and not have lyme. Or, If you don't have a bullseye rash then you don't have lyme.

Lyme doesn't effect behavior.

A spinal tap can easily find lyme.

Lyme disease is easily and quickly cured.
 
Posted by Paul M in MA (Member # 14630) on :
 
How can I get more details about the time and location of the presentation in Rhode Island?

Is it open to anyone who wishes to attend?

Thanks, Paul.
 
Posted by adamm (Member # 11910) on :
 
The absence of inflammation markers (eg. elevated sed rate)

and antibodies means that the patient is not infected.


The Lyme bacterium as we know it now was not created

as a weapon.
 
Posted by CD57 (Member # 11749) on :
 
Lyme disease cannot be transmitted from infected mother to fetus.

When a person is bitten by a Lyme-infected tick, that is the only infection they usually get.

Lyme disease and the associated "co-infections" typically don't present with psychiatric or neurological symptoms.

Lyme disease is over-diagnosed in this country.
 
Posted by robi (Member # 5547) on :
 
The best way to remove a tick is with a hot match, smothering it with oil, dishwashing liquid, etc.
 
Posted by Niere (Member # 14387) on :
 
Myth: After a three or four week course of antibiotics, any continuing lyme symptoms are the result of "post-lyme syndrome" (or whatever it is they are calling it now) and not due to any remaining infection.

[Razz] [Razz] [Razz]
 
Posted by DakotasMom01 (Member # 14141) on :
 
You won't get Lyme if you stay out of the woods and wear the right clothes.

Deer are the only means of transportation for ticks.

You can't have Lyme cause you live in the city where there are NO DEER.

Only Deer ticks transmit Lyme.

The tests are very accurate, so the drs can justify NOT treating you.

Denial of Lyme, its all in your head/depression, and hand out antidepressants to cure you.

Hope these help.
 
Posted by lymemommy (Member # 12495) on :
 
you can't get more than one bullseye rash. ( as per my son's pediatrician when he had more than 20)

or, from a high school teacher in northwest New Jersey, in the 1980's: "our ticks up here don't have it, so you don't have to worry about that new disease they have down in south jersey, what's it called?"


kp
 
Posted by luvdogs (Member # 9507) on :
 
This is great!!! Keep 'em coming!

How about:

"No, my _________ specialist ruled out Lyme already so its not that."

"My infectious disease doctor and rheumatologist would certainly have picked up on that because that is their specialty".
 
Posted by luvdogs (Member # 9507) on :
 
Rotary Club of Providence
Dr. R., LLMD, Lyme Presentation


The event will be held on Monday, April 28th, from 12-1:30 PM. Dr. R. will speak from 12:40-1:30 and there will be time for questions and answers. Lunch is included.

Location:
Marriott Hotel
Orms Street, Providence, RI

Reservations and payment must be received ahead of time to reserve a seat.

There are 80 seats available to the public.
We will stop selling seats once we have reached the 80 seat maximum.

The cost for lunch and Dr. R.'s presentation is $25. This is just enough to cover the cost of his hotel, plus the hotel's lunch cost.

Please send a check or money order in the amount of $25 per person, made payable to: Rotary Club of Providence

Send to:

Rotary Club of Providence
ATTN: Committee on Lyme
23 Dryden Lane
Providence, RI 02904

Please include a note, or reference on the check, in whose name the reservation will be, and how many people you will be bringing. (This will be implied by the amount the check is made out for anyway)

Also, please include contact information. All seats will be distributed on a first come first serve basis. In the event that tickets are sold out, prospective attendees will be called and checks will be returned promptly.

Donations for Columbia's Research Center or the LDF (yet to be determined) will be accepted at the door.

We are encouraging people to bring their loved ones who do not understand Lyme, as well as their doctors and anybody else who might benefit from the information.

We are hoping to have many local doctors there to spread understanding.

For further questions, please email [email protected]

You may also drop an email to the above, if you would like, to inform us that you will be attending and have sent your check.

For Information on Providence Rotary and its goals and missions, please visit:
http://www.providencerotary.org/

Hope to see you there!

[ 26. February 2008, 07:52 PM: Message edited by: luvdogs ]
 
Posted by tanzi2u (Member # 9237) on :
 
False positives on the Western Blot are common.

Non-typical EM is from a spider bite.
 
Posted by CD57 (Member # 11749) on :
 
Ticks are only likely to be "out" in the spring or summer.
 
Posted by FuzzySlippers (Member # 13658) on :
 
Myth: Lyme Disease is a self-limiting disease which requires no more than a 2-4 week course of antibiotics.


Myth: Once you have had Lyme Disease you can not get it again because your body will be immune.


Myth: You can not be re-infected with Lyme Disease while receiving treatment for an existing Lyme infection.


Myth: There is no such thing as a Chronic or Persistent Lyme infection.


Myth: You must recall having been bitten by a deer tick, had a bull's-eye rash, and swollen joints in order to qualify for consideration of a Lyme diagnosis.


Myth: You must live in a Lyme-endemic State in order to have Lyme Disease.


Myth: Lyme Disease (and Lyme co-infections) do not cause weight gain.


Myth: Lyme Disease (and Lyme co-infections) is not an inflammatory illness.


Myth: Lyme Disease is not epidemic.
 
Posted by ldfighter (Member # 9405) on :
 
Myths:

There is 1 known strain of Lyme disease.

If you've had Lyme disease, you are immune and cannot get it again.

The Lyme rash usually looks like a bullseye with central clearing.

If you catch it early, there is 100% chance of cure.

There are laboratory tests that can distinguish between Lyme disease and MS.

The great majority of ticks do not carry Lyme disease.

Suburban areas do not have many ticks.

You need to be near deer to get a deer tick bite.

Most people know when they've been bitten by a tick, because you can feel it.

The EM rash is a reaction to the tick, it doesn't necessarily mean you have Lyme disease.
(truth: it's a reaction to the bacteria)

Psychiatric symptoms are very rare in chronic Lyme disease.

Lyme disease may sometimes be disabling but it's never fatal.
 
Posted by tailz (Member # 10014) on :
 
I got my Lyme from fleas and mosquitos. I would really like to see the word "tickborne" removed altogether. If I had known this, I would have considered Lyme much sooner. It seems that even articles that do mention other vectors only seem to do so as some kind of an afterthought, so most people toss the information as unimportant.

It would be the equivalent of telling someone that you should go to the ER if you have chest pain, but if you just collapse without any chest pain, stay home - it's probably nothing.

Again, I'd like to stop calling Lyme a tickborne disease. I feel it is misleadingly lethal.

Also, I would like clear answers on whether or not Lyme is sexually transmittable, because I'm beginning to think I caught some of this from my ex.
 
Posted by tailz (Member # 10014) on :
 
If you test positive for Lyme Disease twice, you must have been bitten by a second tick! - and missed it in your groin or scalp again?
 
Posted by merrygirl (Member # 12041) on :
 
Lyme disease is rare

"Lyme disease is hard to catch and easy to cure"
 
Posted by luvdogs (Member # 9507) on :
 
No, it can't be Lyme. If you had Lyme you would have more than just one symptom.

Lyme is always accompanied by joint pains.

Oh, that is that achey joint disease.

No, I tested positive for rheumatoid arthritis, so it is not Lyme.

I tested positive for MS so it can't be Lyme.

I have all of the classic Fibromyalgia trigger points, so they know that it is fibromyalgia.

The symptoms all started after "such and such" (car accident, divorce etc), so it is from the stress of that - so it isn't Lyme.

Psychiatric illness alone would not be Lyme.

I have classic migraines, so it is not Lyme.

My son/daughter fits all of the classic autism spectrum disorder symptoms - so it is not Lyme.

No, we already know that what I have is Raynaud's disease - and that can cause all of the other symptoms too.

My doctor said there is no point in taking a Lyme test because there are so many false positives (I love that one!)
 
Posted by welcome (Member # 7953) on :
 
quote:
Originally posted by tailz:
I got my Lyme from fleas and mosquitos. I would really like to see the word "tickborne" removed altogether. If I had known this, I would have considered Lyme much sooner. It seems that even articles that do mention other vectors only seem to do so as some kind of an afterthought, so most people toss the information as unimportant.

It would be the equivalent of telling someone that you should go to the ER if you have chest pain, but if you just collapse without any chest pain, stay home - it's probably nothing.

Again, I'd like to stop calling Lyme a tickborne disease. I feel it is misleadingly lethal.

Also, I would like clear answers on whether or not Lyme is sexually transmittable, because I'm beginning to think I caught some of this from my ex.

I concur. Got my dose from mosquitoes.

As to sexually transmitted.....the scales tilt both ways in that argument. However, that being said, LD being an INFECTIOUS BACTERIAL AGENT, any intimate, sustained and persistent association with an infected individual (male or female) statistically elevates your chance of acquiring any infectious agent.
 
Posted by bettyg (Member # 6147) on :
 
.. there are no others illnesses that mimick lyme disease


,, you have fibromyalgia or chronic fatigue; not lyme disesae...

.. there are no co-infections of lyme disease..

.. all blood labs have accurate testing for western blot igm and igg..

... are there any lyme diagnostic labs in USA? if so where?

.. steroids will cure your lyme disease ...

... surgeries will not stir up spirochetes in your body ...

... cdc results of western blot igm and igg CONFIRM whether or not you have lyme disease ...

..lyme disease can be cured or put into remission by the following; x those that apply
.. antibiotics
.. herbs
.. supplements
.. rife
.. HBOT oxygen theraphy
.. name OFF THE WALL THINGS also in this list
**********************************************

show a list of co-infections and throw in some other illnesses to see if they can figure out which are correct or not!


... every state has chronic lyme literate drs ..

... how states in USA do NOT have lyme disease


...give out the link showing from 1980 - Jan. 2008 CUMULATIVE LYME DISEASE BY STATE CHART
To see your states figures....

http://www.lyme.org/resources/1980-cumulative.htm
 
Posted by luvdogs (Member # 9507) on :
 
ELISA is the most accurate test for diagnosing Lyme Disease. The only problem is there are a lot of false positives on the ELISA.

That's why we need to back it up with a positive Western Blot to rule out all of those false-positive ELISAs. That is the only time the WB is necessary.
 
Posted by Bobidor (Member # 14453) on :
 
You can't have Lyme because you don't have a fever.
 
Posted by lymebytes (Member # 11830) on :
 
Myth: Remembering the tick bite

Myth: We don't have ticks here

Fact: All 50 states have reported LD.

Fact: 1/4 million people were infected w/LD in 2006 it the fastest growing infectious disease in the U.S. and the number one vector borne disease.

Fact: The mostly likely place to be bitten...your own backyard.

Fact: One LLMD claims MS IS untreated Lyme.

Fact: Same LLMD - every psychiatric illness is tick borne disease.

[ 29. February 2008, 06:10 PM: Message edited by: lymebytes ]
 
Posted by Raymond (Member # 13980) on :
 
Quacks are Resident Ducks. [Wink]
 


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