Good Article on MSN's homepage/Lyme, etc.

Shoshana

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There is an unusually informative article, well done, on a woman (and others) who went for years, without a Lyme diagnoses,
that is on the main homepage of MSN.com, and in their Lifestyle and Today sections, today.

It covers many important and pertinent issues, that apply to all of our illnesses, whether Lyme related or not.

Including how difficult it is to get doctors to respond appropriately, to order relevant tests, even when we request them, and how often many doctors make unsubstantiated and incorrect guesses, as well as how inadequately many female patients are often treated, (mis-treated and mis-diagnosed) who present with many symptoms.

It's good exposure, it's validating, and worth reading, in my opinion. And worth sharing with others in our lives, who remain skeptical or judgmental, or limited in their views.
 
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Wolfcub

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Thank you very much for this @Shoshana

How awful that Stephanie was undiagnosed for so long! Poor woman. I hope that now she may be able to find at least a little hope, and things to help her.

This, that she said, is quite horrific but typical...
“So much of why they missed the connections between symptoms for so long absolutely has to do with my gender,” Tait said. “My husband’s been sick. My husband’s been to the ER. He’s feeling run down and more fatigued these days. And not once they do they ever suggest, ‘Let’s look at your mental health first.’ But I can recount half a dozen times that I was in an emergency room for pain, for something serious, and suddenly someone would come walking into my room and introduce themselves as psych.”

Even a family member of mine, when he asked how I was and I told him (tentatively) that I'd had a bad virus, not ever quite got over it (for the first time ever!), and a lady doctor I had seen thought it might be post viral syndrome/ME/CFS....said to me "could it be psychosomatic?"

I was not impatient with him because I know he meant well, but know he would not have said that if I'd told him it was MS.
 

Shoshana

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I was impressed with the clarity of the examples given in this article , for how quickly and spontaneously,
a patient's very valid symptoms can be dismissed.

Most of us have heard equally irrational responses at our own medical appointments, as the examples in this article,
and at the time, most of us did not fully realize that those responses had NOTHING to do with us, personally or with our illness,
but rather, is some sort of a broadly carried out pattern that goes on, and which then results both,
in very poor inadequate medical care, and also in our feeling worse emotionally about ourselves. Ugh!
 
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Including how difficult it is to get doctors to respond appropriately, to order relevant tests, even when we request them
Thank you for posting this. Its so: disturbing to again and again: hear this same tale of Woe.

I was not aware that the Lyme test is not accurate or may not reflect whats up. I guess thats not a surprise.

I have been bitten by ticks SO MANY TIMES. I simply have lived in tickland, for 60 years, hiked for years, own dogs, remove their ticks. While we hear the rate of lyme in this geographic area is lower than some areas (due to the presence of western fence lizard, presumably)....

If you go to certain geographies, the health food store is nothing but: Lyme booklets and recovery strategies. And the doctors don't know this?
 
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a broadly carried out pattern that goes on, and which then results both,
in very poor inadequate medical care, and also in our feeling worse emotionally about ourselves. Ugh!
Been thinking about hypnosis quite a bit lately. So how about all these medical schools include one course in hypnosis. The doctors are to be hypnotized, not the patients. And they will be taught, via hypnosis- how to say the following: "I don't know what is wrong with you" , and "I will work really hard to figure it out and help you".

Repeat Chant.
 
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Been thinking about hypnosis quite a bit lately. So how about all these medical schools include one course in hypnosis. The doctors are to be hypnotized, not the patients. And they will be taught, via hypnosis- how to say the following: "I don't know what is wrong with you" , and "I will work really hard to figure it out and help you".

Repeat Chant.
Actually though, probably my biggest complaint is non of the docs I saw until recently actually were able to admit that they just did not know what was wrong.
 

FMMM1

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Go tell anyone you know who has a diagnosis for Lyme to check out Bhupesh Prusty's talk at the NIH Conference last month. Basically the long running debate on whether Lyme is in fact a specific form of ME persists. Here's a post I did elsewhere:

"A thought occurred to me about Lyme disease and ME. Lyme/ME
"share features of fatigue and cognitive dysfunction, making it difficult to differentiate them" [https://www.ncbi.nlm.nih.gov/pubmed/21383843].


Bhupesh Prusty, in his talk at the NIH Conference, last month highlighted that HHV-6A virus has a strategy to evade the immune system i.e. it fragments the mitocondria using microRNAs [https://videocast.nih.gov/summary.a...SmZZTh_N4gHoPW0nD0C4y2PsRYRufn8H54oGUrr81JcaQ - talk starts around 3 hours 5 minutes]. He presented data showing mitocondrial fragmentation in ME. Also, he stated that it is likely that other virus's, and bacteria, use this strategy to evade the immune system.

The EU funded the development of a diagnostic ["PCR" test for the DNA of the Lyme bacteria] test for Lyme; my impression is that many people tests results are "negative" for Lyme according to this test. The reason is that they are looking for the wrong thing i.e. fragments of the Lyme bacteria [DNA] in blood plasma. What they should be looking for is mitocondrial fragmentation caused by microRNA's in exosomes - same as ME. Bhupesh couldn't find evidence of HHV-6A etc virus's in blood plasma either; then he found the reason - the exosomes cause the change in the mitocondria and the "viral" cause was in the peripheral blood monocytes not the plasma. If you find this difficult to understand then so do I!

So I think we should "reach out" to the Lyme folks. Tell them it looks like ME/Lyme are the same problem - mitocondrial fragmentation caused by microRNA's in exosomes - just ask Bhupesh. Anyone got friends in the Lyme Community?"

ME Action are lobbying for the delivery of a diagnostic test and treatments
https://www.meaction.net/2019/02/26/announcing-millionsmissing-2019-join-us/

@JaimeS
 
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