As Lyme disease spreads, young British mom's death raises questions
By A. Pawlowski - NBC Today - March 1, 2017
. . . Claire Diss — a British woman whose family says her doctors thought she was suffering from ALS (amyotrophic lateral sclerosis) before she was diagnosed with Lyme disease — passed away on February 13. She was 35. . . .
[ 03-01-2017, 06:13 PM: Message edited by: Keebler ]
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Keebler
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- And a "Thank You" to the reporter who worked on this article. Criticisms are not so much of any one reporter as the way the medical consultants have been set up so as to obscure the realities of lyme / tick borne disease from journalists.
Any reporter who is able to do even a decent job can open the door and let in some light. This one is far better than most yet can still leave many in the dark in some ways.
For those new to lyme, some of the statements by medical "experts" in this article are not accurate.
Yes, indeed, absolutely ALS has been misdiagnosed for several where lyme was then found to be the real diagnosis. This is not news to anyone who really knows about lyme.
Key: misdiagnosed as ALS can / has been diagnosed wrongly when, later, lyme / other tick borne infections found to be the real cause of symptoms.
Yet ALS is separate. ALS is not lyme although lyme sometimes has been misdiagnosed as ALS by doctors who did not know what they should have about lyme / TBD (tick borne disease).
That distinction is important.
The doctor who questions this is in the dark. And that they leave his statement at the end is not proper.
The writer of the article above did not consult with the real lyme experts at ILADS. Still, that this article even saw the light of day is quite something. But the last part that says extended treatment does not work: lies. It can; it has for many.
The main study so often pulled out is a faulty study where one single kind of antibiotic for many weeks did not work. Bad study, very bad study.
And the fact that they don't go into the complexity of treatment and just make is seem so simple like it's this one drug or nothing when it's a whole regimen & there are also various ways to approach treatment but offering no direct & assertive treatment can often result in debility or death . . .
and the fact they did not mention OTHER tick borne infections that are always along for the ride . . . all a disservice to the readers.
But, we are supposed to be satisfied that at least some light has been shone on the fact lyme can be deadly. It's a start but they just don't do their job adequately enough.
In fairness, most journalists think their regular doctor consultants have the answers with the government "expert" doctor group to which they look for infection detail - the IDSA - is the worst part of the problem regarding lyme / TBD.
For more detail, don't look to news articles, start here:
These are among the top patient education and advocacy and public awareness:
[ 03-01-2017, 06:30 PM: Message edited by: Keebler ]
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Keebler
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- Lyme / other tick borne disease likely not the only chronic stealth infections that can lead to wrong diagnoses of ALS, MS, Parkinson's and the like because they can have such similarities.
Mycoplasmas - see expert researcher Garth Nicolson's website
Cpn - Chlmaydia pneumonia - has been linked to MS-like symptoms that often clear with adequate treatment for those who have had Cpn identified.
Ancient Virus May Cause Crippling Disease ALS, Study Finds
by Maggie Fox - NBC, Health - Oct. 1, 2015
A virus that infected people millions of years ago may be coming back to life in the form of ALS, killing nerve cells and causing their fatal symptoms, government scientists reported Thursday.
And the discovery just might lead to a treatment for ALS, an incurable disease that affects between 12,000 and 20,000 Americans, depending on whom you ask.
The virus is called HERV-K, and it incorporated itself — permanently — into the human genome between 2 and 5 million years ago. It's a human endogenous retrovirus — an example of nature's own genetic engineering.
Retroviruses — like the human immune deficiency virus (HIV) that causes AIDS — inject their own genetic material into cells. Sometimes, they stay there forever
* "When you treat them with anti-HIV drugs, they get better." *
Because they're part of the DNA, they are passed down from generation to generation in the same way as genes for eye color or height. Experts estimate that these viruses make up as much as 8 percent of the human genome. . . .
[Full article at link above.] -
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Keebler. I never heard of the HERV-K virus, nor the possible ALS connection. Thanks for adding this. Very interesting.
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