-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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beaches
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posted
Yes, this needs to stop. I have read his blogs on and off for years and have found them immensely helpful and informative. Best of luck to this doc.
Posts: 1885 | From here | Registered: Jul 2012
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Catgirl
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posted
It makes me sick how docs like this are persecuted primarily due to some bs lyme guidelines that are flat out wrong (idsa). That's why this happens, and that is why our lyme doc's shouldn't take insurance until the guidelines are changed.
When our congressmen, women or their children get lyme and discover what we're dealing with, then maybe we will get some help.
In the meantime, we have to fight in each state even if it's not our own. There is strength in numbers, and participating in activism really does help. It only takes a few minutes to help fight when issues come up.
I fought for NY docs and I don't even live in NY. I called their legislators and fought. It took me all of ten minutes to call a dozen of them and tell them what I was in favor of (bills). That's what it takes, a little time, a phone call, a pen or a text. Just do it. We have to band together and fight for what's right.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
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posted
LymeMD mentioned that the charges are public, and the details are available for anyone to read.
I posted a question on his blog asking how to access this information, so I could use it to write a letter of support addressing the specific charges.
I always thought this doc was forthcoming with information to help his patients, and was impressed that he took the time and made the extra effort to inform readers through his blog...
Posts: 2072 | From Earth | Registered: Jul 2013
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posted
this is really sad and so frustrating, I hope he gets all the support he needs from patients/former patients so he doesn't face charges. What sucks is the science is bearing out that lyme can't always be killed with short treatments, but the IDSA is so powerful and they have their agenda/doctrine that is taken as the ultimate say when it comes to lyme.
Posts: 30 | From Phoenix, AZ | Registered: Nov 2014
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Abxnomore
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posted
It never ends, does it. This does have to stop and the only way it will stop is with intense political activism and involvement by everyone in the Lyme community. We certainly have made strides in the last 15 years but have a ways to go.
The people of Maryland need to rally fast and furious to get a Lyme Disease Bill passed in their state and we all need to help in whatever way we can to help this doctor.
He provided an excellent service with his blog and from what I understand he's quite a good doctor. The IDSA and their interested parties must be stopped.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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droid1226
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posted
I've been an avid reader of his blog for 4 yrs. He should not be prosecuted by any means...However, I think he can practice in another state. I saw a Dr who had practiced in 5 states because he kept losing his license.
The Gov't has unlimited funds and laws by which to manipulate, pay for, and prosecute anyone they choose. They especially don't like when you throw it in their face by blogging about it. He probably saved lives with his blog and now he probably involuntarily screwed a lot of his patients.
I'm trying my best to not go insane reading this. On the other hand I'm continuing to more and more realize that antibiotics are not the answer in so many of our cases. I'm thinking in a perfect world, every LLMD has an ND in their office working with them as to not just dole out so many antibiotics. Yanking these guys' license is not the answer.
droid1226
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posted
We've allowed this to happen. Not signing petitions because they take a few minutes, not filling out pre-filled letters to congressmen, etc..
SOPA was a great example of how petitions beat big money and didn't allow congress to slip a bill under our nose which would have filtered the internet's information.
posted
The only thing I can think of is if someone printed some bumper stickers that said something like "Save Dr. x".... with his webpage on it.
First it would bring attention to the uneducated masses as to corruption and secondly would enlighten people as to how incideous lyme is and what to watch out for.
...a bumper sticker might sound stupid at first glance.
But with people now on internet with phones right in their cars it makes sense.
Just think ....a young couple with a couple kids driving on their first summer family vacation, totally oblivious to lyme and ticks and they see the bumper sticker.... decide to check out the webpage on their long drive on their cell phone.
They would at least watch out for ticks or know what to do if they found one on one of their kids or themselves.
It's a win win
Just Think 5,000 Bumper Stickers.... Wow
Posts: 66 | From Toronto Ontario | Registered: Apr 2014
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I'm trying my best to not go insane reading this. On the other hand I'm continuing to more and more realize that antibiotics are not the answer in so many of our cases. I'm thinking in a perfect world, every LLMD has an ND in their office working with them as to not just dole out so many antibiotics. Yanking these guys' license is not the answer.
Totally agree, I feel like what you are saying is a sensible suggestion. Abx are not always the answer, they can be, but not always, and we need more focus and solid research on how to treat the long term lyme cases and not just leave those patients hanging with no options.
Posts: 30 | From Phoenix, AZ | Registered: Nov 2014
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poppy
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posted
Abx are not the answer???? They have kept me alive for a long time, but if the docs are taken down, no amount of ND is going to fill that space.
In fact, no abx is just what the IDSA wants too. Be careful what you wish for. Choose no abx for yourself, but let the rest of us have what we need.
Posts: 2888 | From USA | Registered: Mar 2004
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Phoiph
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posted
Poppy...
I believe sebreg said, "Abx are not ALWAYS the answer, they can be, but not always, and we need more focus and solid research on how to threat the long term lyme cases and not just leave those patients hanging with no options".
The reason I like this doctor's approach is that although he mainly utilizes antibiotics, he also is open minded about alternative therapies, including hyperbaric (which he uses in his office).
He has also refered several patients to me who needed "coaching" in obtaining their own chambers.
Doctors like this are rarer than doctors that use solely antibiotics.
Just as antibiotics have "kept you alive", altenative therapies have kept others alive, and in my case, gotten me well.
I don't think there is anyone here that wants to see antibiotics held back from anyone; on the contrary, we need more doctors willing to prescribe other options. Nobody is asking anyone to choose either or.
By the way, ND's can prescribe medications, (including antibiotics) in my state, and I find that some are very Lyme Literate and provide excellent (sometimes superior) care...
Posts: 2072 | From Earth | Registered: Jul 2013
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Catgirl
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posted
quote:Originally posted by Abxnomore: The people of Maryland need to rally fast and furious to get a Lyme Disease Bill passed in their state and we all need to help in whatever way we can to help this doctor.
He provided an excellent service with his blog and from what I understand he's quite a good doctor. The IDSA and their interested parties must be stopped.
I agree. Then they should post here so we all have access to it and everyone should participate.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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posted
Someone in MD can start a Care 2 petition. Anything to help this poor doc.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Hey Poppy I just meant they are not always the answer for everyone. I have no doubt they have helped you and many others regain health and quality of life. They have certainly helped me and I have been grateful to have long term access to them.
Didn't mean to make it seem that I don't support their use, just think we need more research in other therapies as well to better understand the disease and how to treat it.
Like the effects and success rates of using abx plus other therapies used in conjunction (antiparasitics, herbals, etc) depending on the lyme variant plus whatever coinfections the patient harbors.
We need better lab dx and research into understanding these organisms for more targeted and hopefully more effective treatments.
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[ 05-15-2015, 04:33 PM: Message edited by: Robin123 ]
Posts: 30 | From Phoenix, AZ | Registered: Nov 2014
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posted
Where I live, the ND is the only place you can get antibiotics for lyme and they have only been given the right to prescribe recently. (too late for me)
My friend was bitten in the neck and went to emergency and requested antibiotics and they gave her the run around, we have to wait and see, most ticks don't carry lyme, yada, yada.
She went to her own doc and he just sent her to an Infectious Disease Doc who said I don't think you have lyme, so no antibiotics. Her only option for treatment here is an ND and only if she gets a lyme positive test.
I as well believe I am only here because of herbal regimens as even the ND's won't give me antibiotics because my stomach is thrashed from lyme. So I am very grateful for herbal protocols.
I respect everyone's choice in treatment. As was said before, we need options, as what works for one may not work for another and your treatment of choice may not even be available to you.
Not everyone can travel for expensive treatment, either. I hear some, especially from Australia where most docs don't think there is lyme disease ,are recovering after having hyperthermia treatments in Germany, so I hope new effective treatments continue to be discovered.
Posts: 590 | From Canada | Registered: Oct 2007
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poppy
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posted
Sorry, maybe I misinterpreted. Have had such difficulty getting abx, that the thought that lyme patients would provide ammunition for the no-abx black hats....was just too much.
I do understand that not everyone has access to them, for reasons that we all know, so of course anything that will help them instead should be available. I just get worried that some new patients are sent this way even if they might be able to get abx. And have seen many posts from people who said they spent thousands on alternate treatments that were ineffective.
And now, back to the main issue in this thread, which is another lyme doc being punished for doing the right thing for patients.
Posts: 2888 | From USA | Registered: Mar 2004
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Abxnomore
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posted
Agree there are lots of issues we face but the main one here is another doctor being investigated for treating Lyme patients--that us, all of us.
What can we do to help. Is anyone organizing anything in Maryland to help him? What are we all doing to get the word out about the problems we face.
It's Lyme Awareness month, are we doing the most we can, even putting a signature on your email with some links is easy and quick and helps spread the word. That's what I have done for Lyme Awareness Month.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I called and sent letters to the n.y. legislatures too. Also wrote them thank yous after dr. Protection bill went thru. I even sent thanks yous to some of their attorneys. I am going to start writing thank yous to state legislature s in any state from now on.
Maybe it is going to take us to support certain candidates in our states via monetary donation or volunteering to campaign for them if they support us.
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[ 05-15-2015, 04:39 PM: Message edited by: Robin123 ]
Posts: 211 | From In my house | Registered: May 2007
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lymeboy
Unregistered
posted
quote:Originally posted by nomoremuscles: It's been almost forty years, and here we are still not allowed to use the names of doctors?
And now we're arguing whether or not it is okay to have open discourse about Lyme in general?
This looks like a failure of Lyme activism.
Maybe it's time for some new strategies.
Yea, I have to agree. What's been done so far is honorable and just. But it might be time to regroup. This keeps happening.
I don't have any ideas. I'm not much of a strategist. But there's no reason we can't all step it up and build a better ship. I'll help if I can.
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posted
It seems there is no organized help for our llmds? We have been working hard here in San Diego to save one of our experts, and I posted it in the Activism section because her name is all over it and I did not want to get in trouble because of the "no name" rule.
We have tried to get lymedisease.org to post her story even on face book and have contacted ilads.org for help and no one wants to get involved to help these doctors because then they will become targets.
How are these patient advocate groups really being advocates if they allow all the lyme docs to disappear? WE need to organize and help these docs somehow.
Also, FYI, CA has a doctor protection law in place but apparently it is not a law, but only a suggestion, and the medical board can choose not to agree with it, which is why they were able to target our llmd
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[ 05-15-2015, 04:41 PM: Message edited by: Robin123 ]
Posts: 75 | From San Diego, CA | Registered: Feb 2007
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posted
Thank you for all of your efforts and sacrifice. You deserve more than a thank you card.
I have certainly never meant to imply that all the volunteers are doing nothing. I have been a volunteer for the last 9 years also but my credentials don't come close to stacking up to yours. You are truly amazing and I would be honored to meet you someday.
it seems that patients basic need a qualified doctor to diagnose and treat them if we truly want to help them. When all the doctors are gone because they can't follow all the rules imposed by "powers that be" how does that help patients?
I just don't understand why some doctors get the attention and others are left to fend for themselves. Who decides that?
I am a small business owner so it irritates me to have other people tell me how to run my business who know nothing about it.
Our LLMDs are business owners also and I find it astonishing the criticism they receive and how many unqualified, uneducated people think they know better how they should run their medical practices.
That has been the response I get from powerful people who don't want to help this doc. She should do this or that or she's disorganized or yadaydayda.
Tell that to all her patients who now have to go to some fresh from ilads training new LLMD if they are lucky to find one and be their guinea pigs figuring out how to treat them!
Our LLMDs are heroes on the front lines for all the patients. How will we motivate new doctors to become LLMDs if they see how easy it is to be thrown out the window with the bath water?
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[ 05-15-2015, 04:44 PM: Message edited by: Robin123 ]
Posts: 75 | From San Diego, CA | Registered: Feb 2007
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Phoiph
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posted
Here is a link to the specific charges against LymeMD:
seekhelp
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posted
Wow, that summary of charges is pretty severe. I don't see how anyone can get out of that. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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LisaK
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posted
this is all such a mess. it makes me crazy.
_
-------------------- 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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posted
The only thing that will change anything are laws on the books.
We need a powerful lyme lobby 24/7. Not just when the IDSA is looking at the guidelines or when a specific bill is up.
I found this interesting. Compare our LDA's lobbying efforts to those of the Interstitial Cystitis lobby that was successful years ago with even getting specific rules written in the SSA Blue Book because of what they went through previously. They were successful, yet they know they can't stop lobbying.
Also, they were a smaller group of patients nationally. Therefore, we must have a powerful, non-stop lobby...or each Dr will continue to be picked off 1 by 1.
Agreements with 1 state's medical board are only backed up by....? They change the rules mid game and there's nothing anyone can do.
droid1226
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posted
I agree 100% with TC & AG
When someone openly defies the law. No matter how just or unjust you think they are. The Gov't WILL make an example out of you.
Case in point. Julian Assange, Edward Snowden, Aaron Swartz.....
Those are just a few examples but they've all led to TERRIBLE outcomes resulting in either death, life sentence in jail, or having to live on foreign ground.
Both recent presidents have been VERY involved in the demise of people like this so it's not a party issue. It's a machine that's unstoppable that has unlimited resources to hault people who publicly mock/leak information. The gov't has almost become a living breathing entity that isn't FOR the people, it's more worried about it's own survival. Sound familiar? They will use medical laws from the 60's if they have to to prosecute this Dr.
In this case, a dr with good intentions was basically mocking the medical board. Regardless of how we feel about how wrong the med board may be and how many people this man helped. He will probably be made an example of.
There is one thing more powerful than anything and that's media. So these celebrities coming out with lyme(or whatever this thing that makes us all sick is) is HUGE.
We need to make sure that the Activism section of this site isn't a graveyard like it is now. We can come out and tell people we are sick, what it is, what is, corruption, etc....
When I first came here 3 or 4 yrs ago, I was told to say I have MS or something else. I understand why someone would do that. I don't have that in me to just not say it like it is, and it really hurt me financially. I had a blowout w/ my insurance company on the phone, they instantly stopped covering everything.
I do think it's time to fight for what's right. I know it sounds corny. Like a call to arms or something, but w/ so many sick, it's time to stop being stepped on IMO.
Catgirl
Frequent Contributor (5K+ posts)
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posted
quote:Originally posted by droid1226:
There is one thing more powerful than anything and that's media. So these celebrities coming out with lyme(or whatever this thing that makes us all sick is) is HUGE.
We need to make sure that the Activism section of this site isn't a graveyard like it is now. We can come out and tell people we are sick, what it is, what is, corruption, etc....
I do think it's time to fight for what's right. I know it sounds corny. Like a call to arms or something, but w/ so many sick, it's time to stop being stepped on IMO.
I completely agree 100%.
Regarding celebrities, whenever you see anything with a celebrity getting lyme, email it to all your friends, post it on facebook. Support these celebrities, don't ridicule them. It's a door to inform others about lyme and company.
The more famous people that get this disease actually gives us a chance to not only get the word out there, but for them to help us. The potential is there.
We need to convince celebrities that the guidelines are out of date, bad, etc (because they are), and this is why they are stuck fighting lyme.
So post at those sights, tell them specifically why they are stuck battling lyme (bad guidelines). It's not enough to look for a cure. The guidelines need to be changed and maybe they can help us to change them.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Tincup: I don't know how you do what you do. It sounds like this is common among some advocates around the country. They work so hard for so long pushing this 500000 lb boulder up the hill only to have it repeatedly roll back down over them....and start again...and repeat.
I'm sure many have stopped advocating because of it. I hope you can take care of you and find a way to recharge. Kinda like the oxygen on the plane analogy.
Posts: 115 | From US | Registered: Sep 2014
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posted
droid and catgirl: agreed and agreed.
Posts: 115 | From US | Registered: Sep 2014
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droid1226
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posted
I post on every comment section because I get this visceral anger just waiting for someone to say something ignorant....lately there's been A LOT less of those people. Almost none on the recent "people" article about the Olsen twin.
31. They say he prescribed "Ability." I assume these IDSA hacks are referring to Abilify.
Posts: 37 | From Florida | Registered: Aug 2009
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beaches
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posted
Rhiagel: How pathetic. Guess they don't feel the need for proofreaders. Prescribing ability! Wow! Too bad they can't prescribe Logic.
To everyone: Tincup has been up to her eyeballs in advocating on behalf of Lyme Disease patients for years, decades in fact. I know this because I am almost a decade in taking care of sick kids and at this point I know the real deals. If she recommends something, as in let's not push certain bills/legislation, she knows whereof she speaks and I will take her word for it.
Posts: 1885 | From here | Registered: Jul 2012
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poppy
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posted
And if you think the charges against the doctor sound bad, read the charges against ANY lyme doctor who has done nothing more than treat chronic patients. They all sound like this, including Dr. J,the children's doctor. And he was found guilty and had to pay a lot of money to have his records reviewed for a long time afterwards. As did Dr. B.
Anyone who isn't supporting lyme docs should stop their treatment now and live with the consequences. Because that will be the result when all our docs are taken down.
[ 05-15-2015, 04:49 PM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
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posted
poppy: I agree. The charges appear to simply be copied and pasted from one patient to the next.
Posts: 115 | From US | Registered: Sep 2014
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Abxnomore
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posted
Personally, I don't think it's fruitful to air dirty laundry about Dr. J. and there is much of that presented in this thread.
In my book, that in amounts to doctor bashing and I don't feel it is helpful nor it is, according to my understanding, allowed on Lymenet.
What is helpful is providing useful solutions and ideas about how we can help all of our LLMDS, especially those in trouble and general information.
Calling Dr. J. out as one who would not tow the line doesn't sit right with me at all.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
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posted
I've been part of the Lyme community since 1987. I'm well aware of everything you pointed out and am well aware of the difficulties that these issues present.
I've been here through all the years, protesting in Albany, protesting at the first gathering in front of the IDSA meeting in NYC and even the first organized protest in front of the OMPC when Dr. Orens lost his license.
I understand why progress has been slow and difficult and all of the political road blocks in the way.
I will certainly not be calling his attorney if he has one and am also aware that they charge a huge fee by the hour. Why would I be so stupid as to do that?
What I don't like is airing dirty laundry about this doctor here on a public forum, plain and simple. If there are ways to help, let's talk about that. If there are not, let's talk about that, too, but let's not talk about details concerning what he did and didn't do. It sounds like sour grapes.
I don't think it really serves anyone in this community well, especially if they are not privy to what is going on behind the scenes.
Doctor bashing does not promote the kind of community spirit we need but instead creates factions within the Lymenet community.
[ 05-15-2015, 04:59 PM: Message edited by: Robin123 ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Dekrator48
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posted
Please pray for Dr J!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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It's obvious this case hits particularly close to your neck of the woods based on your comments. I can hear a lot of disappointment in your posts.
All the hard work wasn't in vain.
I feel like the Dr is being blamed for the rules changing mid-game and other Drs being targeted.
It sounds like J is being blamed for everything that occurred negatively within Md. However, correlation is not causation. These are shady people behind this: ins cos, pharm cos, idsa, lobbyists, areas of govt.
It might look like Dr J's actions caused an immediate ripple effect but isn't that what they would want? Divide and conquer in the process?
His blog was no different than Dr H's book with case studies and the same tx in the book (the book was written very professionally and backed up with a billion research citings).
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droid1226
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posted
Patient A is so frustrating to read.
The reason no other diagnosis was considered by the Dr was because he had the rash & the positives outweighed the negatives when it pertains to catching it early!
They are using that against him....I suppose they want him to let the patient go chronic I suppose for a lifetime of pharm's and ill health.
I honestly can't read anymore of this. It's sickening.
It also leaves out a major portion of those of us who DO continually test positive for lyme & co infections and cherry picks Dr. J's cinical diagnosis/treatments.
Abxnomore
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posted
I still maintain that it's not fruitful to be airing dirty laundry about what Dr. J did or didn't do. It's doctor bashing, no matter how you want to word it and pointing blame is not helpful no matter how upset you are about this situation.
Whatever was done for 15 years to keep things at "bay" was bound to crash in time when dealing with such a politically charged and biased situation where certain groups have the power to push through their own agenda while defying science to the detriment of the larger population
and have been able to deny that chronic lyme and it's associated co-infections exist and has caused untold suffering of so many.
Clearly it's time for a new model and approach. This one broke down, the damn is now broken and maybe because it was held together with a flimsy patchwork of materials that was the best that could be accomplished at the time given the odds and the political powers that be.
I'm certainly not implying that lots of effort and hard work was not put into accomplishing that feat.
Ultimately something like this was bound to happen even if it was one doctor who caused it, who you blame. If it were not he, it would eventually be another doctor. The system is untenable.
It's terrible that 15 other doctors now have problems but what is really terrible is that any of them should have any issues, problems or restrictions in how they treat Lyme patients. That is what needs to change.
The real issue at hand is that the IDSA flawed guidelines are still in effect after all these years and have not been refuted or changed at this late date despite the efforts to do so.
Until that happens and until the CDC gets on board, too, acknowledging just how serious Lyme Disease and It's associated co-infections are nothing really will change.
I see momentum in many of the new Lyme activism groups that have popped up, many on facebook and especially since they are geared to a larger nationwide audience. The Mayday Project for one and the group(s) in New York State that worked to get the Lyme Bill passed are fine examples.
Ultimately, we need one nationwide push, a relentless uprising just like any other political movement for change that will turn the tide. Unfortunately, this kind of change comes slowly when fighting against powerful organizations that have it in their own interest to keep the status quo.
It's no different than the early mobilization in the 1900's for labor unions. How many suffered, even died, in the process? Many did and it took them a long time to the gain rights and protections they deserved.
How long did it take to bring down the South African apartheid state?
But they had one thing in common. In the end they worked together for a common cause for all.
I don't take lightly that 15 other doctors now have problems but maybe this will be the catalyst to push toward a new model. How they will do so, I don't know. But expanding to a broader national movement and coming together rather than a local one that protects one fiefdom may be a direction to look in.
[ 05-15-2015, 05:05 PM: Message edited by: Robin123 ]
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sixgoofykids
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