My views on testing, treatments or this particular situation are in no way an acknowledgement that Lyme doesn't exist. It does. It's a brutal health condition..
Very few things in life are an either/or situation. There may be many choices available to be proactive. I understand the desperation. I live with it every day.
Why would you think they are? I stated that we don't really know all the details and that's the biggest issue I have with this story. They may very well be sick. They may have Lyme. The stem cell treatment may have cured them. The whole thing may be a scam. The reality is we don't really know by taking this story at face value.
In fact taking things at face value and not questioning them, may end up causing more problems. If we don't dig deeper into issues, if we don't keep asking questions, any solution, if there is one or more out there, may get sidetracked and in the long run that is a real disservice to those who are sick.
You seem to be one who doesn't accept the status quo, asks many questions and does a lot of research.. Probably 99.9% of us on PR are like that. That's commendable.
If we don't come to the same conclusions, so be it as that's part of the process of learning. It's not necessarily personal nor disrespectful.
Enjoy your turkey day!
Hi Barb,
I hope you had a nice Thanksgiving as well. I appreciate that you understand the pain and desperation that come with Lyme disease, independently of how you may feel about the current testing methods.
My point regarding the article in this thread
(about the family with six children struggling with Lyme) has to do with how much doubt and resentment we had been dished for years, be it ME/CFS, Lyme, and everything in between. When you automatically question "if they are even sick at all", it does trigger a knee-jerk reaction in me that I'm sure you would understand and relate to.
I can't begin to tell you how many times I bounced from doctor to doctor, only to hear the same doubts. For over a decade I was pumped pull of antidepressants or useless treatments because my doctors wouldn't understand what was happening to me, and frankly I doubt they cared much about it. It is now, in the last few years, when I have developed multi-systemic issues and my health is evidently plummeting after years without treatment that doctors "see it." I was also lucky enough to meet a terrific ME/CFS specialist in 2013 that saw the signs, investigated further, and was able to bring to light the core problems
(immune dysfunction, Lyme, co-infections, NK cell depletion, EBV titres off the charts, severe IBS, etc). If only any of the countless doctors I saw since the late 90s had taken an interest in my case, maybe I wouldn't find myself in this sorry situation.
Can't tell you how many times I was told
"you must be depressed," "maybe you should go out more," "you shouldn't look up diseases in the internet," "maybe you are not happy with your life," "maybe you are a bit of a hypochondriac," "we all get tired as we age, get over it." All that came from doctors that knew nothing about me other than a medical chart. They were all wrong.
I agree with the principle of being skeptical, of asking additional questions, getting to the bottom of things and not taking people's words at face value. No doubt. If I didn't, I wouldn't be here in PR looking for answers. But after 16 years of hell
(no other word can describe this nightmare), my immediate reaction to a news report of an entire family afflicted by Lyme is
sympathy. Even more if they have been scammed, and mortgaged the house for an expensive treatment that will do nothing for them.
If I have learned anything from my ME/CFS-Lyme experience is to not dismiss people when they say something's wrong. We all know our bodies better than anyone else, and if something's not right, you certainly would notice it first. I would even extend this to all sentient beings. Case in point: we were once saved by our pets, who knew there was a gas leak in the apartment but we
(humans) could not sense it.
Anyway, I don't want to get off track. I hope that family finds relief to their horrendous situation. I feel sorry if they have been scammed. I don't doubt there's something making them very ill. If they are not even sick at all, well, then that's on me for believing it. But I would rather trust they are going through a medical nightmare than dismiss the whole thing as some sort of scam.
PS: independently of where we come from, I wanted to say we share a lot in our own experiences. You recently posted a description of the "tired but wired" symptom in another thread, explaining how even trying to sleep feels exhausting. I could have signed that myself, sincerely.
