posted
They are so concerned about the almighty dollar .. afraid they are losing too much business.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
wow, what crap is right.
Grrrrrrrrrrrr
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The scien, the scien, the scient... can't even say the word....
This trash article and study behind it is setting the stage, in my opinion, for the section in the upcoming Three Stooges Lyme Disease Guidelines where there is a list of treatments specifically NOT RECOMMENDED for Lyme patients, like vitamins and nutritional supplements.
Unless we are no longer in America or other free countries, everyone has a right to purchase over the counter items, except, according to the three stooges, those with Lyme, as was stated in the old guidelines.
But, I expect the list of things we can't use will be longer this time around.
Link to abstract of the original study is below. You know these guys, listed as authors, are something else.
What they are doing to us and our doctors reminds me of the woman who claimed she accidentally ran over her husband in a parking lot after a heated argument. Three times.
Clin Infect Dis. 2015 Apr 6. pii: civ186. [Epub ahead of print] Unorthodox Alternative Therapies Marketed to Treat Lyme Disease.
posted
We can comment at the site.
Posts: 13171 | From San Francisco | Registered: May 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Well, I agree with the article. There are a lot of alternative therapies that I sense are just snake oil. We Lymies are so desperate to get well, we are vulnerable to many trial and error therapies.
I've done a bit of research on this, and I think the article makes a good point.
However, I firmly believe that long term antibiotics followed up by herbal therapies are the best route to get Lyme Disease and its co-infections under control, in my experience.
Posts: 1954 | From Illinois | Registered: Aug 2007
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lymeboy
Unregistered
posted
CherylSue, what works for you may not work for someone else. And ViceVersa.
Don't knock it til you tried it.
We're definitely being preyed upon. By Insurance companies, hack doctors and scientists, big pharma, and even some lazy, greedy "LLMDs"
But that doesn't mean everything outside of convention is snake oil.
"research".... In the information age we can find something to support any theory that's been floated, good or bad. Scientific papers and studies are as compromised as anything else.
ABX and herbs are great for knocking infection down. True. Some people have not been helped by them at all. Some here have gotten well with "snake oil" treatments that don't have much scientific backing.
The lousy ELISA test is a product of bad, lazy science. SO is the western blot.
Perhaps do some research on Steere, one of the authors of this article.
This article is designed to make us all look like wackos. We are not. Urine therapy is a questionable practice that is helping some people. But the idea of it is so offputting to most because it involves pee. If you want to brand a group of people as whackos, insinuate that they drink pee and gobble questionable vitamins. Or use HBOT.
ABX is the frontline for treating Lyme and has helped many, including myself. I needed more and so do many of us. And ABX are not without problems. Big problems.
How many people have died from doing urine therapy and taking supplements? none.
And How many people has big pharma killed with dangerous drugs? Millions.
"science" is being used to line pockets and kill people. Has been for centuries.
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I have spent thousands of dollars on alternative therapies to no avail. I was desperate as I was in pretty bad shape and couldn't work to support my family. I regret that I did that, but I was dying and wanting to live.
The best thing for me was to get a good LLMD, do long term antibiotic therapy with several abx, and follow up with herbal therapies. I'm currently on Byron White Formulas and off abx. I am doing okay.
As I mentioned in the last three words of my previous post, IN MY EXPERIENCE.
However, I still believe in the scientific method and clinical trials. That's the great thing about the scientific method, it's objective, and when updated data comes in, it revises itself. It doesn't get stuck in a rut and holds on to antiquated theories.
I am happy that there is a bill in Congress now that supports Lyme research. I read that Obama will probably sign it the end of this year. Maybe now we can get some real answers with data to back it up.
Posts: 1954 | From Illinois | Registered: Aug 2007
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lymeboy
Unregistered
posted
"...when updated data comes in, it revises itself. It doesn't get stuck in a rut and holds on to antiquated theories."
This is the issue. This is exactly what DIDN'T happen with Lyme disease. People have been strung along for decades by people like Steere.
Chronic Lyme usually happens because a Lyme patient will be prescribed Steere's 3 weeks of ABX and sent on their way. 6 months later, you can't get out of bed? Must be something else. -BAD SCIENCE. This "science" exists only to protect Steere's ego. He'd rather Dr. J lose his license than himself. He'd rather thousands of us live a horrible existence and die early than admit he was wrong.
Scientific method is a wonderful thing. Ask Eva Sapi or Alan Mcdonald what they've found. The research has been done. The evidence is there.
If Steere has anything to do with the new "research science" bill in congress, I will guarantee the man will double down on his outdated theories. The only people that should be creating the new infrastructure are the people who've been on the frontlines already for years. Not Steere.
Scientific method only works properly when it is truly objective. and the IDSA and CDC for that matter have proven to be anything but. Greed warps truth. I agree that the bill in congress right now appears to be a good thing. But we'll see what's what when the dust settles.
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CherylSue
Frequent Contributor (1K+ posts)
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posted
I agree that the scientific works well when it is objective.
Then your main objection is with Steere and the politics surrounding the IDSA and the CDC. However, I think the CDC is getting pressure by the number of Lyme cases and the publicity to turn their attention to Lyme Disease.
I am hopeful that Congress will see it our way, especially since the East Coast is an hotbed area for Lyme Disease. Lyme Disease is an epidemic that the CDC can no longer set aside. All we need is a few celebrities to make a lot of noise. One of the Olsen twins now has it, and April Levigne appeared on People Magazine.
I am optimistic that things will get better down the road...
Posts: 1954 | From Illinois | Registered: Aug 2007
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lymeboy
Unregistered
posted
Yea... I'm VERY CAUTIOUSLY optimistic as well.
My main issue is that the old players are still at the table. They're gonna hammer away at us until they die. We'll die first of course.
Currently there is a bit of momentum. Not a ton, but some. There's a lot more publicity than normal. But the publicity is not all great.
There are a lot of celebrities that have it or have struggled with it in the past, including George Bush.
We need MORE coverage. More pushback from credible people, not reality tv stars. People read that stuff in the supermarket and forget about it in a second.
As long as guys like Halperin and Steere are given the podium, they will continue to bury us. They have no interest in doing anything for us.
I'm optimistic too. But the unfairness and injustice in the Lyme world has been so incredible, I'm afraid to feel good about anything. Especially when I know the same old devils will be involved. They will NOT change course. Especially now. I would love to see them ousted from the Lyme world altogether. I know that is a tall order, but it is what's right. Why not? There's shakeups at my job all the time. Why shouldn't the IDSA ghouls be made accountable?
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Of course a lot of silly stuff has been tried by desperate people - I used to see it all the time at the whole life expo.
However, some stuff does work, like you mention herbs, CherylSue. And the remedies that the article disses, many of them work for me, and I've seen them turn others around and get them better, especially the stem cell injections, sometimes the oxygen chamber dives, and more.
And one size does not fit all, as lymeboy is saying. Like I am allergic to most herbs and antibiotics. Our bodies are all different when it comes to tolerances, including ability to detox.
Natural remedies don't usually get tested because testing costs a lot and natural remedies cannot be patented - that right there is why testing doesn't happen.
Even if they could, I'd say it's still an individual matter as to whether someone can tolerate something, since even tested treatment still has variety in how people respond.
So I keep an open mind about treatments and how people say they're doing on them.
The purpose behind this article is to hurt Lyme patients, since the authors want nothing more than to keep us from getting anything that works.
Posts: 13171 | From San Francisco | Registered: May 2006
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lymeboy
Unregistered
posted
"The purpose behind this article is to hurt Lyme patients"
Yes. I'm not trying to have an argument with CherylSue. But I can't watch one of us try to sympathize with those people without and not try to change your mind.
We're sick because of them. My friend has been bouncing between docs for a year. This is after his face froze up on one side and he lost motor functions. HE HAS LYME. He tested positive multiple times, but the docs he goes to are insistent on getting just one more test, just to check... because it should be gone. After all, he had the 2-4 weeks of abx! And so he gets bounced around, waiting on test results, doing what the docs tell him and getting nowhere. He could listen to me, but why would he? There's a bunch of rich doctors that are telling him what to do. In a few years, he will be a complete mess, like me.
This current setup around Lyme is a complete joke and an international tragedy. Living like this can be a waking nightmare. Being laughed out of 99% of the medical community makes it surreal and compounds the suffering.
I won't give Steere a milliliter of credit or compassion. The man is a ghoul. So's Halperin. these people are compromised and dangerous. They aren't doctors, they're opportunists. Weasels. They've worn out their welcome at the table yet they insist on staying and cramming their old bad "science" down our throats.
I respect your opinion on alternative treatments CherylSue, absolutely. But I can't see anyone here, especially someone sick since 2007 who's been through a host of treatments, try to sympathize with Steere in the interest of science. Steere's no more a scientist than I am. Of course you should say how you feel but I'll continue to try to fight those dirtbags on every front I can. This is OUR SIDE'S friggin website, not theirs!
Are some methods of treatment for Lyme questionable? Absolutely. Was this article really about alternative therapies? No. People love to hate alternative medicine and these guys know that. The real purpose was to discredit the existence of Chronic Lyme. That is Steere's real job for like 30 years now.
I'll be happy when I see Dr. H and Eva S writing the Lyme disease section of this congressional bill. As long as the same old guard is involved, we'll just get more versions of the same old crap.
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posted
That article was printed in a newspaper in Ottawa Canada ottawacitizen.com.
Now I'm a Canadian and I'm Pretty sure that's where our Parliament is ... Ya like in Ottawa.
Posts: 66 | From Toronto Ontario | Registered: Apr 2014
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1:35 to 2:10 on the video
Posts: 66 | From Toronto Ontario | Registered: Apr 2014
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Wonderful video from from Canadian legislator in Canada. Thank you for sharing.
People ARE listening.
Posts: 1954 | From Illinois | Registered: Aug 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Whoa, Lymeboy. Quite a passionate rant, but I don't like Steere anymore than you do, and I understand your frustration with people in the medical field who do not support real Lyme research.
However, living with Lyme for 15 years, (7.5 years misdiagnosed) I wish I hadn't tried a lot of those ineffective alternative treatments. What a waste of time and money, and sometimes I felt like a guinea pig. It didn't make me feel any better after researching and later finding these therapies weren't very effective either.
This is the point I am making: Don't waste your time beginning with the alternative. See a good LLMD, do the antibiotic route (if you don't tolerate one medication, do another one until you find one that is compatible with your body), and follow up with a good herbal plan prescribed by your LLMD.
If you eventually can't tolerate the abx anymore, work with a reputable LLMD to guide you through the right herbs or supplements or another effective alternative.
Again, I reiterate that we need better research and clinical trials to determine the efficacy of treatments.
Posts: 1954 | From Illinois | Registered: Aug 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I like to find some good in everything I read, and I did find some small things here in that articel that I agreed with, but this gist seemed to be on a mission to promote hate and intolerance. that's just the feel I got. and I know nothing about the parties involved. only a feeling I got
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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lymeboy
Unregistered
posted
I do that sometimes. Nothing personal. The subject of IDSA hacks makes me a little crazy.
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
The IDSA makes me crazy, too!
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
If the author of this paper had to live for one day with what we do, there would be a complete 180 on the advisability of trying "alternative" treatments.
This disease is so individualized given the difference of co-infections, parasites and heavy metals, in addition to the role of genetics.
Therefore, "scientific" research as known by Western Medicine may not be effective in determining efficacy of adjunctive therapies.
In addition, Western Medicine presupposes its own superiority over say, Chinese medicine, instead of considering how the 2 could complement each other and as a result we all suffer.
Posts: 71 | From La Quinta, CA | Registered: Jun 2012
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