Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Your little friends have published another last minute article on the way to preparing YOUR new treatment guidelines.
McStupid gathered the info and the rest of them put their names on it to make it appear "official". What a joke.
They needed documentation to support all of the things they will list in the new guidelines that we can't have and will use this article to support it. Sooooooo...
Along with no long term antibiotics in the new guidelines- now you won't be able to get anything else either! So just keep suffering as your disease progresses and grab that shovel so we can start digging our own graves.
Clin Infect Dis. 2015 Apr 6. pii: civ186. [Epub ahead of print] Unorthodox Alternative Therapies Marketed to Treat Lyme Disease.
Some patients with medically unexplained symptoms suspect or are told that they chronically suffer from the tick-borne infection Lyme disease. These patients are commonly targeted by providers of alternative therapies.
This study was designed to identify and characterize the range of unorthodox alternative therapies advertised to patients with a diagnosis of Lyme disease.
METHODS:
Internet searches using the Google search engine were performed to identify the websites of clinics and services that marketed nonantimicrobial therapies for Lyme disease.
We subsequently used the PubMed search engine to identify any scientific studies evaluating such treatments for Lyme disease.
Websites were included in our review so long as they advertised a commercial, nonantimicrobial product or service that specifically mentioned utility for Lyme disease.
Websites with patient testimonials (such as discussion groups) were excluded unless the testimonial appeared as marketing on a commercial site.
RESULTS:
More than 30 alternative treatments were identified, which fell into several broad categories: these included oxygen and reactive oxygen therapy; energy and radiation-based therapies; nutritional therapy; chelation and heavy metal therapy; and biological and pharmacological therapies ranging from certain medications without recognized therapeutic effects on Borrelia burgdorgeri to stem cell transplantation.
Review of the medical literature did not substantiate efficacy or, in most cases, any rationale for the advertised treatments.
CONCLUSIONS:
Providers of alternative therapies commonly target patients who **** believe they have Lyme disease****.
The efficacy of these unconventional treatments for Lyme disease is not supported by scientific evidence, and in many cases they are potentially harmful.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
But wait! Here are the answers! YES! Bumsteere has finally come up with a cure for us. Well, at least he is telling us how to treat that imaginary condition he and his friends call Post-Lyme Syndrome.
Now that we know what alternative therapies are bad for us- thanks to Lantos, Shapiro, Auwaerter, Baker, Halperin, McStupid and Wormser... ain't they sweet?...
Here is how we are suppose to treat Post-Lyme Disease symptoms, compliments of Steere. Now they don’t have to publish new guidelines!
Oh, that's right- it doesn't say anything- its hidden!!!
What Constitutes Appropriate Treatment of Post-Lyme Disease Symptoms and Other Pain and Fatigue Syndromes? Steere AC1, Arvikar SL1.
Author information 1Division of Rheumatology, Allergy and Immunology, Center for Immunology and Inflammatory Diseases, Massachusetts General Hospital, Harvard Medical School, Boston.
KEYWORDS:
Lyme disease; pain and fatigue syndromes; post-Lyme disease symptoms; treatment
PMID: 25852123 [PubMed - as supplied by publisher]
posted
I too love the "blank" answers for treatment. Are they saying there aren't any, or they just haven't come up with any yet? Inquiring minds want to know!
And does that include people with a dx FM and CFIDS (knowing folks on those boards don't even want to talk about TBI's)?
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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posted
It includes everyone. They don't want to deal with any of this. It's hard to believe that people can behave like this in the face of a global pandemic.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
On my way out- will share more later- but got the list of things they don't want us to have- alternative therapies. It is here...
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<<< Tincup >>>>>>,
Thanks for giving us the information on this, it is so upsetting. I had TxCoord come read to see if I read it right. I did... Aaargh.
We have friends that will want to know about this news. Like TxCoord said to me, are they going to refuse treatment to folks w/ different types of Arthritis too now???
Jus' Upset Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, this is upsetting for many people. I am sorry to be the deliverer of bad news, but you all need to know.
Finally was able to get the page ready for prime time. Please check it again for more info- and some added specifically for Silver about Steere's recommended or NOT recommended treatment for arthritis.
posted
I know that the Alliance for Natural Health is fighting the supplement restriction very hard - please join with them if you'd like to help. I get all their emails and do what I can re advocacy.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Rivendell said.. "Thank goodness some states are passing laws that allow doctors to treat lyme patients in the correct (lyme literate) way."
Hey Rivendell... Just so you know...
There are no laws anywhere that allow Lyme Literate doctors to treat patients outside the IDSA guidelines. No where.
The laws simply say that they can't be specifically targeted for treating Lyme. They are still being targeted left and right, but the charges are for paperwork errors or other bogus stuff.
The docs are in as bad of shape as always, and in some areas where people have tried to pass bills, worse off with new legislation that has been passed.
Robin48264849- you do that too? On top of lyme stuff? WOW!!!! You are a good one.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' Silverwolfi here,
Hi there <<<<< Tincup, and the Repliers to this Thread >>>>>.
Thanks for the Arthritis info' w/in the link as well, Tincup. I guess they don't wantus to have help for the various Arthritis forms either.
Hmm, so are they going to send drivers, and helpers for TxCoord and others who have systemic arthritis of whatever type? I'm sure not, he's just supposed to live in his wheelchair permenantly I guess ?? And how many of us would be in the same boat w/o a paddle?? I hate to think.
I guess McStupid, Bumb-Steere and the rest don't believe that 'First Do No Harm' applies to them. Grrrr...
Jus' me myself and I here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
@sacredheart - we can still see LLMDs who practice via ILADS protocols. It's still a big political issue because only around 7 or 8 states - anyone know the number now? - have passed laws protecting doctors who treat Lyme patients longterm. My state is one of them and still we're careful re doctors.
Randi! Hoping you're treating all those things to keep yourself as well as possible!
@Tincup - I see several urls for the groups fighting vaccines, GMOS, etc.
www.anh.org - the Alliance for Natural Health - also has branches around the world.
TC, I get their emails, but I mostly skim through - I don't have time to deal with everyone!
It is funny though - I learned about the Gardasil vaccine from them, and thought the troubles sounded awfully similar to vaccine problems Lyme patients experienced,
so when the CA gov't okayed it for use in schools a couple years ago, I testified before the SF Unified School District schoolboard for the first time ever, asking that they not allow Gardasil vaccines to be used in the schools, and briefly explained the possible life-and-death health consequences I had been reading about in these sites.
I got calls assuring me they wouldn't, that it was a private matter between kids and their doctors.
Then I got contacted eventually by Gardasil advocates who heard about my testimony, and they wanted to know who I was!
I had to laugh as I explained I was a Lyme patient who could relate!
So that's one thing that can happen - cross-over recognition, not a bad thing to do from time to time...
[ 04-13-2015, 03:51 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
This is just an expansion of the items listed in the 2006 guidelines which included IV vitamin C and magnesium.
The ILADS conference I just attended had a presentation on ultraviolet light (UVI not UVB).
The thing that really surprises me is the list of herbs. That is one thing that anyone can buy without a prescription although of course the higher ups want to change that.
As far as I am concerned nothing on the list is an actual cure for lyme and tickborne diseases; but, many of the adjunctive therapies do treat symptoms and also help to restore a person's health. And in conjunction with antibiotics the treatments can be very beneficial. Just antibiotics or just alternative treatments only works for a lucky few people in my opinion.
Doctor's will continue to offer many of these treatments, but possibly those who are currently being investigated by medical boards might think twice about offering these alternative options to patients.
I do think it is ironic that cortisone and hydrocortisone are on the list as very very few true LLMD's will even consider those treatments for their patients due to the potential for harm.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Going to try to make this clear for those who don't know...
Doctors treating Lyme outside the medical guidelines are NOT protected by the laws that have popped up in a few states.
The laws simply say they can't be "targeted" because they are Lyme treating doctors. (They all are worded differently, but that's the main point.)
The problem is even with the laws they can still be charged, reported and investigated repeatedly for just about anything under the sun, which is very costly for them. They can still be forced to give up their licenses, be fined, have sanctions against them and strict rules governing their practices, etc.
The laws did very little other than anger (how DARE they tell US what to do!) the State's medical associations, health departments, universities, etc. and now there is a "vengeance" thing going on and for some docs it's become worse.
NO MORE BILLS PLEASE!!!!! It's only with horribly grueling work by a few people who have been stuck trying to fix these situations, and LOTS of luck that the bills, all which were changed by the idiots after being submitted, and had to be fought over to the death, ALL didn't end up being worse for us!
I've completely forgotten what the topic was, but at least got this out in the open.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh, tis my own post! HA!
Thanks Ribbon5933333!!! And yes, I remember that meeting you had! It was a tough one and I was glad you addressed it!
Sacred- my thought is the LLMD's will continue doing what they are doing, some even thinking they are better protected by those laws, but will probably get nailed just the same. They are still being targeted, but the IDIOTS are using a different tactic so it doesn't appear to be so obvious.
In my opinion, McStupid and the IDSA guideline authors will not stop doing everything they can possibly do to hurt and/or destroy us, our docs, etc. It seems they have an unrelenting case of OCD (or is it exploding anxiety and arrogance?) and they will continue targeting the patients they are sworn by oath to help and the docs that help them.
posted
Are these IDSA people not doing the math? In the Lyme community, I keep hearing of people who are doing much better on long-term antibiotic usage.
Where do they get their data from, anyway?
I've never been asked to participate in any of their surveys, even though I'm CDC positive for Lyme and first saw an ID specialist when I went to get formally treated in the beginning.
Why wouldn't they WANT to get Lyme patient feedback and take ALL the data into consideration?
I guess it really all boils down to money after all, or else a sick sense of "survival of the fittest" on their terms.
However, as long as more and more people are benefitting from other alternative treatments as well as extended antibiotic therapy then I can't see how on earth the IDSA will be able to keep their status quo in operation.
I know that the insurance companies are tied up in all of it, though. Maybe the Lyme community needs to stage massive efforts to influence them somehow.
My cognitive faculties are not up to par and haven't been for years, so what I'm saying might not make a lot of sense, but it just seems that the data will speak for itself and this IDSA group will eventually have to capitulate to real people's health status results.
Has anyone ever tried any of their rheumatic-type drugs that they say are helpful? The ID doc I'd been seeing (before getting an LLMD) said that I should try to see a rhematologist, but I decided to pursue a different course of action to take charge of my health.
Maybe those two arthritis drugs they recommend really are helpful, though.
Posts: 35 | From Eastern U.S.A. | Registered: Feb 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
OMG. please God help us.
I must say it amazes me how you TINCUP , and others can spout off things- the way I used to be able to- whaa whaaa, poor me. I can't do anythign good any more. thanks for getting the info across to us brain zapped lyme people!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
not sure if this was mentioned anywhere here, but there has been an update on this petition about this:
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
chard said.. "I know that the insurance companies are tied up in all of it, though. Maybe the Lyme community needs to stage massive efforts to influence them somehow."
They are the problem. THE problem. Even people working for insurance companies have told me this in secret- "look to the insurance industry for your Lyme problems." The insurers are ruthless and powerful.
Ever wonder why they weren't jumping up and down with all the "Obamacare" setting up and did you notice they were really quiet during that time? They stand to make even more now.
If they thought they'd lose any money they'd have fought it to the death.
Here is a chart showing how much they spend just on lobbying each year. You can find YOUR insurer on the list below the chart to see how much they spend on lobbying, rather than paying the benefits that are due you and so many others.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I agree it is the insurance companies, but the insurance companies don't cover natural healing (herbs, etc.).
Why should integrative medicine be a threat to insurance companies, since most patients are paying out of pocket for those treatments.
Maybe insurance companies know those treatments are the future because natural healing works so well and doesn't cause antibiotic resistance. So they are trying to nip that in the bud immediately.
And pharmaceutical companies are threatening by natural healing as well. Can't get their greedy little paws on it.
I saw on the internet that Dr. Oz is being disowned by his collegeus (sp?) for promoted natural healing. I doubt if he cares.
Well, I am helped immensely by antibiotics. This is terrible.
What a stupid war and so harmful to us. I will never understand GREED.
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