posted
I owe my Lyme diagnosis and much, much more to other patients I've learned from. So this is not a put-down of Lyme patients at all.
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.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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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.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I agree, plus I could easily add another 10 items.
As patient advocates we need to be able to maintain credibility when speaking to other Lyme patients and physicians.
Tom G
Posts: 29 | From Duluth, MN, USA | Registered: Mar 2005
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liz28
Unregistered
posted
Don't forget the big one: just accept that Lyme takes years and years to cure, and stop looking for anything else that could be causing the problem.
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Kudo's.
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
------------------ 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
Posts: 5262 | From North East Iowa | Registered: Sep 2002
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hey, I'm printing this one out and putting it to good use in the outhouse! LOL Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Thanks for posting this...a good reminder that there are no absolutes....
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.....
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I know we have our fair share of loonies on this web...I also suspect some bumbSteere spies as well(no I am not mentally paranoid-it's only a disease of the mind if it isn't really happening) Anyway, if I miscontrued you Paulscha I appologize...but where in heck did you come up with this crap.... Where did you come from??? Who are you and these other guys that agree with you like you Lou and Tom Grier??? Do you all have neuro-borreliosis so bad you can't discern the quacks from the serious lyme patients on this net??? Or are you just planting a seed of distrust on this board cus you have another agenda......if so take Gabriels advice along with this so called list and nuke baby nuke! zman
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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The heat of a clothes dryer does not rid undies of yeast. Yeast is "tough".
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.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
The German washers all have heating elements and you can choose between lots of preset programs, 30, 40, 50, 60 or 95 degree Celsius for different fabrics, types of laundry or load sizes. Yeast dies at 90 degree Celsius (194 F), but only white cotton can take that temperature without problems. Kathi
Posts: 210 | From VA | Registered: Mar 2002
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posted
Zman, read the introduction to my post. It's rude to doubt people's good intentions, unless you have some reason to. You don't, because my intentions are perfectly straightforward.
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?
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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posted
Wondering about the z man's brain functioning. He is usually more rational. This may be lyme speaking.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I didn't intend to start a discussion about underwear - I just wanted to ease this dicussion a bit .
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.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
If you can read...I wrote that if I misconstrued your intentions I apologized up front...If I did I apologize once again...may be my lyme brain not getting it... So what exactly do you mean...the ten things you listed are from this "mystery website"...cuz you did'nt get them from here.
Who am I ?? Just a poor guy who isn't leaving anything nameless or afraid to call it like I see it....
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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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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