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Old 10-24-2013, 01:06 AM #1 (permalink)
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Default Misdiagnosed, it was Lyme disease all along

I wanted to check in to say last year when I was flipping out about possibly having ALS, a year later almost I come to find I have Lyme and co-infections.


So, all young and relatively healthy people that come down with a mysterious affliction, check out the possibility of Lyme/chronic Lyme.


I figured I would post this for the masses coming here inquiring about ALS when they very well could have Lyme.


It is very hard to test for bc they aren't accurate in any sense, and I wanted to post because there is a lot of info being found and revealed these days. There are indirect tests like the CD57 and C4a to check for them as well.


A lot of cases of MS, Parkinsons, and even ALS are found to be from underlying infections and people are getting help.


Have a great night!
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Old 10-24-2013, 01:20 AM #2 (permalink)
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Default re: Misdiagnosed, it was Lyme disease all along

BTW: Lyme is not easily cured. People do die.

But the good news is, it is treatable. Hopefully one day there will be a cure for those who reached a chronic state.
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Old 10-24-2013, 11:31 AM #3 (permalink)
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Default re: Misdiagnosed, it was Lyme disease all along

wow good to know. how does one get liyme disease? i always heard from ticks? how would i know if a tick bit me? im going to my neurologist in 3 days. im diagnosed parkinsonism so im curious
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Old 10-24-2013, 12:21 PM #4 (permalink)
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Default re: Misdiagnosed, it was Lyme disease all along

Lymes is from a tick bite. It is the deer tick that carries the disease. If you spend a lot of time outdoors in states that have ticks you have probably had a tick bite.

Signs of lymes is flu like symptoms, fever for a unknown reason and sometimes a bullseye rash near the bite. My son had lymes and did a 21 day regimen of antibiotics.
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Old 10-24-2013, 03:21 PM #5 (permalink)
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Default re: Misdiagnosed, it was Lyme disease all along

Lyme can be vectored through any biting insect. All forms of ticks carry bacteria. Not everyone gets a rash, and it can be passed congenitally.

Watch "Under Our Skin". A doctor cured his "ALS". All diseases are just labels, because the medicine community says most diseases have no "known cause" which is a load of hogwash.

Find an LLMD or someone open minded enough to explore Lyme and its many coinfections.
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Old 10-24-2013, 04:21 PM #6 (permalink)
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Default re: Misdiagnosed, it was Lyme disease all along

oh thanks vicki
i was wondering because i thought maybe i could have a way out of this even if it meant antibiotics . i havent had any flu symptoms and they did blood work. sigh.
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Old 10-25-2013, 04:10 AM #7 (permalink)
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Default re: Misdiagnosed, it was Lyme disease all along

Biggest misconceptions about Lyme and co:

1.) You don't have to have the characteristic rash to get Lyme, nor do you even know if a tick ever bit you because nymphs are the size of the period at the end of this sentence.

2.) Multiple species of ticks carry Lyme and co. "Deer ticks" is the slang are the black-legged ticks. People get confused and think they are different, but they're one in the same.

3.) Once it goes chronic, which could be months after infection bites, it could always resubmerge or continue to infect because it's undertreated and misunderstood terribly.

4.) Not just ticks carry the disease. Any sort of bug that bites including mites, mosquitos, and even fleas are carriers. Fleas are more likely to carry bartonella, another horrible co-infection to get.


Ysabel, I'm sure you have heard about Linda Ronstadt. She had a tick bite and 7-8 years later, Parkinson's. Michael J. Fox was bitten by a tick and three years later, Parkinson's.


It's awfully peculiar, don't you think?


I can't think of the doctor's name in "Under our Skin" but he had ALS-type symptoms, was treated with IV abx, and has pretty much recovered. That death sentence of ALS had been revoked.



Lymedisease.org is a great source, and so is stopthelymecrimes.com to read up on Lyme.

ILADS.org is the leading resource in study in the US right now. Check out these sites if it suits you.


It's a highly emerging illness... well, it has been for the past 50 years or more.



I contracted lyme from my mother in the womb, and it became active after dental work. Sounds crazy, but she had "MS" symptoms in 1975 which dissipated. That could have been when she was infected.


Any stress on the immune system like giving birth, an accident, a family death, etc can bring it out of hiding to take over when you're hit weak.


I can only lead the horses to water, but you can't make them drink. Tests for Lyme are highly inaccurate for now (a live culture test is being made to see the actual spirochete in the blood). Until then, people are going to keep getting misdiagnosed or undiagnosed.


Find a lyme-aware doctor if you're interested. They most likely won't take insurance since insurance companies are told that Lyme is "easy to cure, hard to get".


Even having one band on your WB can represent a positive. It's like being "a little bit pregnant". If you have lyme-ish symptoms and certain tests come back abnormal, it is safe to say it's Lyme.


Some even feel most to all illnesses or diseases that have exploded over the last twenty years to be a by-product of Lyme or co-infection. These babies are stealthy.


If you want to explore Lyme, again, find someone who specializes in it. Regular neurologists and ID docs don't understand the pathology behind these conditions. That's because they refuse to acknowledge Lyme is persistant because it hides, it cysts to protect itself, and it forms colonies like biofilms to protect their ranks as well.


It may take a while to see improvement if you're positive, but it's a marathon... not a sprint.
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