We're not infallible, though. I was a volunteer staff member on a certain website, which shall remain nameless. Until I wised up, I naively repeated what turned out to be half-baked, pseudo-facts.

So when I talk about patients giving dubious advice, I'm not just pointing the finger at others.

Anyhow, these are the ten worst pieces of advice that I've seen Lyme patients give each other (your list might look very different):

1. If you want to get well, you have to do exactly what I did.

2. IV antibiotics have been discredited, and oral antibiotics are superior. OR: High doses of antibiotics have discredited, and low, pulsed doses are superior.

3. All Lyme patients respond to the same treatments in the same way.

4. Antibiotic treatment never works.

5. Antibiotic treatment always works.

6. If you don't stop doing X and start doing Y, you will never get well.

7. If your symptoms get worse on antibiotics, you can always safely assume this is a Herxheimer response to bacterial die-off.

8. There is a cure that works for everyone, but only a few people understand it.

9. Lyme patients with chronic pain should avoid narcotics, or they'll get addicted.

10. Putting absolute faith in experimental treatment is necessary for that treatment to work.

 

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oops!
Lymetutu

 

This is not an illness that lends itself to dogmatism.

On the other hand, if you keep an entirely open mind, any old thing can blow in. Thinking now about all these "alternative" treatments. Might be good in some of them, but I always wait to see what happens. Not interested in being first in line. This has saved me from several dead ends.
 

As patient advocates we need to be able to maintain credibility when speaking to other Lyme patients and physicians.

Tom G
 

Can't argue anything on here.

The only advice that I know I can give time and time again is this;

Focus. Now is the time to focus, and carry a true knowledge no matter how bad a day may be...it too shall pass.

Trout

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Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

 

It might be equally interesting to examine what is the BEST advice heard from Lyme patients.

1) Find an LLMD.
2) Eat Magnesium and probiotics like there's no tomorrow.
3) ...just rambling now...

...maybe this should be another thread.

I won't hold it against if you start it before me. I'm too tired.

Night all.

Michael
 

Considering the complexities of this bacteria and the disease it causes, there is no way to have a boiler plate response to individual issues...only sharing our experience, strength and hope.....

Thanks,
Carol Ann
 

To kill candida, put your underwear in the microwave.

This way, I burnt black holes in my best undies!

Gabrielle
 

Did it work?

*runs away*
 

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After washing your undies, WHILE THEY ARE WET, put them in the microwave for a minute or two on high power. It does not destroy nylon or cotton underwear.

This suggestion came from my sister's LLMD in a major city.

I have done this myself and it did NOT destroy my "Warner's". Try it yourselves with an older pair of undies.

Following "microwaving" the clean wet pair of undies, put them in the dryer to finish the drying. Careful, they will be really hot when you take them out.

It also has been suggested that if you use a sponge at the sink to do dishes, do the same every day ie., put it in the microwave when it is wet, for a minute or two.

Heat...a VERY strong neg. charge, does destroy most pathogens. This is why we cook our foods, but it also depletes the minerals in our foods.

Microwaves use FREQUENCIES to heat our foods by causing the electrons in the foods to move rapidly.

Years ago, in Germany, it was common to boil clothes to clean them...perhaps the fabrics have changed.

 

All this "who are you, where did you come from" stuff reminds me of some totalitarian state where you can be arrested for not having your papers. I don't mean to be rude, but who the hell are you?

I'm hardly new on Lymenet, and have been posting on I & I and other message boards for a long time.

I didn't attack anyone's motives, but you did, right out of the block. Is that an example of the loyalty to other lyme patients you'd have us all practice?

 

Kathie, you're right, I usually wash my cotton underwear at 95 degrees Celsius but I darkly remember someone saying this wouldn't be enough. Probably I misunderstood. I put it dry in the microwave and it was the elastic that burnt and made the holes.

In any case it was very funny and I laughed a lot.

I want to add that I got lots of very good advice here on this board. Don't know what I'd do without you guys.

Gabrielle

 

I read a lot of posts and have'nt seen you here a lot or maybe you just have'nt ticked me off yet...pun intended....

I saw where you have 100 some odd posts however I guess I'm missing something...you actually got these 10 worst bits of advice off of this net???

From other lyme patients????
THey are totally and uncategorically contrary to everything I've learned about this disease and it's treatment...

Put that in the bank....
Lou...yeah perhaps I'm lyme thinking unclearly but and maybe I'm not...

I just want to know who's on who's side here........what's up doc........zman

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