February 2018

Email I received last month...

QUESTION- I wondered what some of the issues are that seems to have put some of the Lyme groups at odds with each other and if there is a way to pull you all together so we are all pulling in the same direction?

My response...

ANSWER- When you were younger someone probably said you shouldn't “hang out” with the bad kids because what they did would reflect poorly on you.

In my opinion, volunteer patient advocates and groups with a good reputation will not and rightly should not be associated with those whose practices are at a minimum shady if not outright despicable.

For a couple of decades people have tried to urge, force or shame volunteers into “working together” for the "good of it all". In my opinion, after seeing what some people/groups are doing, coming together should not and will not happen.

Personally, and I am extremely tolerant of many things, but I won’t associate or work with people I do not respect and can not trust. I also feel if people don’t take a stand to do what is right they are not being true to themselves or to anyone else.

***

I've been contacted by many people in the past few days asking me why I resigned from a private group that I'd been an active member of since shortly after its inception. Some asked that I think it over and come back, which I am so very touched by and appreciate, but after thinking about it I've decided it isn't going to happen.

I'm not playing these games anymore and will not keep quiet about what is going on. I'm also filling the hours I'd once spent each day researching, formatting and posting for others benefit, doing things like tearing out walls for the contracting work needed since Hurricane Irma, and one day I even snuck off to the beach for a few hours. I like this extra time and freedom!

I will continue to research and share findings, just not with this one group. I am, thanks to some very kind and helpful friends, posting now on Facebook. I am also a member of several other public groups where I can post, and some private ones too.

I have about a dozen active websites to tend to and am about 1/2 of the way done with a book. See the list at the end of this page, along with my email address for anyone to contact me if needed.

I will miss the daily back and forth with some of the members and I will miss them! I wish them all well.

* * *

The following are my opinions and rendition of what happened to make me resign from the group, with documentation provided in the appropriate places...

I was given, without any discussion, a two month suspension for posting a new study and some additional facts in an email titled... (see email in full below)...

Exploring an alternative approach to Lyme disease surveillance in Maryland.

This is a topic I’ve followed closely, reported on, fought for and against and been directly involved with for 20 plus years. You can see some of the results of my efforts here and here.

I can certainly accept that 2 month "punishment" if the owner, AFTER HAVING ALL THE FACTS, feels I broke the rules of his site in 1 or 2 of my 8,000 plus posts over the last 10 years. (He didn't have them.)

And... there are a few things that occurred and I was told to do that I can’t warm up to. First, there was no discussion and no review of the facts. I was pronounced guilty and was gone based on lies and trash that the owner was told by a small group of long time troublemakers that have fooled many, but certainly not all.

So, as a result of NatCap Lyme, et. al. complaining to "daddy" and years of blaming others for what they are doing (the flip-flop routine) every chance they get, I’ve been told the following, via a couple of emails from the owner of the site.

Keep in mind some of NatCaps members/friends have a long history of not discussing, but attacking, and as recently as a month ago have publicly and privately attacked or tried to belittle and discredit me and others. It’s been so bad some have had their posts removed by moderators and some have been permanently banned from public forums for these attacks. A few random examples below (and there are many of them on record)...

LymeNet- Post by Nvrgiveupx4

Facebook Post

LymeNet- Posted by Hardball (Member # 19338) on 02-27-2010 07:55 PM:

TC [Tincup]

You have an obvious interest in courtroom proceedings. Since you seem so interested in the workings of legal matters, I suggest that you go to law school.

Then again, to do so, you would have to apply in your given name,not one of the many aliases that you employ.

For that matter, if a trial is not going well for you, you will not be allowed to erase the transcript and bury it from the jury, as the law requires that all matters be transparent. That is something that is distinctly lacking in your "representation" of the Maryland lyme community.

Did it ever occur to you that elected officials may not want to deal with people who employ aliases. [They always have before- for 18 years at least]

What are you hiding or hiding from? I have heard you loud and clear that you do not want me to speak for you. I am a licensed attorney who practices under her given name. I have no problem going on the record and discussing my actions. I do not want to be "represented" by a lyme patient who cannot even act under her own identity. No one with an alias will speak for me!

AND... "While it is clear that TC has been on the scene for sometime and has probably made some very positive advances on behalf of the community, there has been much destruction as well. One delegate actually told me that she was threatened with bodily harm by a lyme activist. This should not make us proud." [NOTE- Although patients took this above comment to mean me and lashed back at Hardball as a result... I was over 1,000 miles away while working on this bill and there was no police report filed by the Delegate for this incident, which is required when a death threat is made on an official. So let's stick to the truth Hardball, if you know how to do so.]

Email to NatCapLyme, Susan Green and others... from Delegate Pena-Melnyk- trying to rush through a bad bill hoping no one will notice and specifically trying to hide it from me.

"All, here is the newly crafted [bill] language. It is the Virginia bill, which is essentially the CT bill with some minor changes. There is no real time to make additional changes. We want the bill to pass. We cannot let the perfect be the enemy of the good.

We already have enough of the crazies with the metal aliases (HA -- you all probably know who I'm talking about) after us. Can someone let Dan Jaller know?

We have no email for him and only an office number that is difficult to get through on.

XXXX, Legislative Aide, Delegate Joseline Peña-Melnyk, (301) 858-XXXX (w), (301) 538-XXXX (CELL)"

[Email- From: Joseline.Pena.Melnyk@house.state.md.us-

To: sgreen@hardballXXX ; kgmcgheeXXX; d.knieriem@verizon.net; jaybird7290XXXt; natcaplyme@natcaplyme.org; sdel@XXX- Date: Fri, 12 Feb 2010 17:41:19 -0500- Subject: FW: HB0290_with_956387_1.rtf ]

EMAIL to me from one of the people listed in the above email to NatCap Lyme, Susan Green, et. al.

From: d.knieriem@verizon.net

Subject: Re: IDSA/ALDF Maryland Lyme bill

Date: February 11, 2010 6:13:19 PM EST

To: afterthebite@gmail.com

Please REMOVE me from your mailing list immediately. The things you say and do are NOT in the best interest of Lyme sufferes, and I think you are a "very" mixed up person motivated by personal power and self-importance. And obviously more than bit maniacal.

~ ~ ~ ~ ~ ~ ~ ~ ~

My Punishment

1. I am suspended for 2 months for sharing the post below.

2. After the two month suspension all of my posts must be reviewed by the owner before they can be shared. [My response- I don't mind the owner wanting to babysit me, however, it would be a gigantic waste of the owners time over the next ten years if I were to post at my usual rate of 800 posts per year, so this isn't hurting me at all, it is hurting the owner and the patients he could be helping.]

3. I was told I am not allowed to talk about anyone negatively. The owner specifically named NatCap Lyme.

[My response- First, I didn’t talk negatively about them. I posted a scientific abstract with a related link to an event recorded over 7 years ago that caused the majority of our Maryland Lyme treating doctors and others to be investigated and/or charged by the Board of Physicians (medical board).

That sorrowful action, by a handful of people with no experience in passing a Lyme related bill and who hid what they were doing from Maryland and other long time Lyme groups, advocates and patients, managed to eliminate Maryland's “no docs will be charged” agreement that had been in affect for many years. I have those statements in writing from both the Maryland DOH and the Maryland Board of Physicians.

The officials had honored this agreement and we didn't have any problems until a new Lyme treating doctor in Maryland started blogging about the months and months of multiple antibiotic therapies he was prescribing, which was like waving a red flag in front of bulls named Hopkins, IDSA and CDC.

He was warned, by me personally and multiple times, to not do that or he would suffer the consequences. He was warned about kicking LLMD's because he may need their help one day. He did it anyway, then when busted as predicted he tried to get people with no legislative experience in passing Lyme bills to quickly help him get a bill passed in Maryland to protect himself.

That failed bill effort (ILADS, LDA, all Maryland groups and all Lyme patients I'd heard from didn't want the bill) led to that small NatCap, et. al. group demanding the Board of Physicians "do something" to fix the situation (a situation that wasn't even broken).

They did "do something". They immediately adopted the IDSA guideline recommendations as the proper/official method of diagnosing and treating Lyme, denied a LLMD trying to get licensed in Maryland, and started going after as many Lyme treating professionals as possible. Here is a partial list of Maryland Lyme treating professionals who were charged as a result of NatCap, et. al.'s actions in 2010 and continuing. More were investigated and not charged. Link HERE.

Additionally, many (hundreds of) patients lost their doctors as a result of these new rules and many had to start traveling, often with their sick children, out of State for help or do what many did, go without.

This poorly planned and rushed action took us from being the best protected State in the country to the worst, basically overnight. Obviously, NatCap Lyme, et. al. doesn’t want people to know what they did (the reason for the complaint) and the devastating results that occurred because of their actions.

My feeling (and policy) is- if you are going to do something on behalf of others you should be totally above board with the project, ask for and welcome input and share details. This was not done by the NatCap, et. al. group.]

4. I was told by the owner that my opinions on the events of 2010 are incorrect [legislation in Maryland, and the group's owner is not in Maryland and not experienced with legislation here or elsewhere]. I’ve since learned that the owner's opinion was based on NatCap Lyme’s ongoing (for years) lies and gossip.

[My response- years ago NatCap Lyme with a few others launched a smear campaign to discredit me and others who volunteer to educate and help patients, especially anyone helping the LDA. My only guess is they wanted the power and money (donations) and/or to be considered the top dog in the Lyme Community for some reason? Why else would they do something this wicked and attack people working so hard to make positive changes?

Anyhow, I’ve heard the most horrible nasty lies about me and others that were being made up and spread around- so many and so horrible they all couldn’t be addressed. Having little energy and time and already on a mission to fight the IDSA guidelines, I was forced to ignore them (as were several others) and we just kept doing our thing. While they attacked, we pushed forward.

Example- the latest lie... a Lyme patient/advocate said I told people I was glad that a child with Lyme had died. To try to make themselves appear credible they said they got that info from several sources.

Anyone who knows me would know that is something I would never even think to do, much less wish upon anyone for any reason. For those who don’t know me, they surely could have asked and most of them didn’t bother, they just spread the rumors amongst themselves and to anyone who would listen.]

6. I was told (more like warned) that posting something that "faults advocacy groups has no benefit, hurts advocacy efforts and can result in legal liability" for anyone posting it. [My response- Hog wash! People have a right to know what others are doing in their name and people want and deserve the truth.

For three decades many have depended on me to help handle their health issues as well as the complex legislative issues. I’ve been involved in and/or worked in some fashion on nearly all federal and state bills for decades- good or bad bills. I never asked for that job or responsibility, but there was no one else to do it and someone had to take it on or Hopkins/IDSA/CDC would have wiped the floor with us and destroyed our future generation's chances of being treated properly. I didn’t want to do it, didn’t like doing it- politics, yulk- but I agreed because we were short on help and didn’t have any other options.]

7. The owner said he, unbeknownst to me, was "in the middle" of the Maryland legislation issue in 2010 and has spoken to others involved, which is obviously where he has been getting his opinions/false reports. He never contacted me about any of it even though he has known me for at least a couple of decades and we've talked about everything else under the sun. [My response- I am extremely disappointed with the owner and many of the doctors involved for sneaking around and hiding everything from people who need, want and deserve to know.

Some of those involved in the deception have also made lying into an art form. Some went so far to try to make themselves appear credible they lied under oath to legislators at a hearing- it’s on film. So I was heart broken and so sorry to hear the owner of that group had hidden the fact he/she was involved in that gigantic mess.]

8. I was told by the owner, based on his/her knowledge stemming from NatCap’s lies, that I made allegations against NatCap that are "incorrect".

[My response- I urge anyone to prove anything I’ve said is incorrect. And they are not "allegations", they are facts supported fully with documentation- and a part of our recorded legislative history.]

9. I was told if I am "truly sorry” for sharing the post below I should remove the page where the words “do something” are linked that go to the Lyme Legislation website.

[My response- I’m not at all sorry for sharing that scientific article, the comments or the link. I reported the facts.

And even if I were sorry I still wouldn’t remove the page in question from MY website based on info the owner got from people with a long history of being sneaky, lying and hurting Lyme patients, doctors and others in the Community. And if NatCap and others had integrity or morals they’d admit they were wrong and try to fix it instead of running away while falsely blaming others.]

10. I was told by the owner I need to review other posts on MY websites that may fault any advocacy organizations or advocates.

[My response- Can you say C-E-N-S-O-R-S-H-I-P? Good grief!

Last I checked, if someone is doing something objectionable or not- and in this case something that will negatively affect others health, lives and futures- I have the right and an obligation to patients and others I’ve worked with and who trust me, to report on it as long as it is something I care with sincerity and can provide documentation for, or state this is my "opinion".]