HealingWell
Search Close Search
☰

Lyme Cryme Women

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/19/2017 7:55 PM (GMT 0)
The Lyme Cryme women are nucking futs! After questioning there overall perspective of lyme being treatable, I was ousted. I merely questioned their comments about lyme being unkillable and that people never feel better. I feel that a lot of their info is good but to say nobody has ever healed is outlandish at best since we all know many folks who have healed. My concern is their reverse fear mongering to lymies and making the blanketed statement nobody heals and if so where are they? To boot, they say that some people get relief with no treatment at all but also say healing is not possible and that rituxan is the only therapy. Most of their links posted are written by them and are overly emotional. Ive seen to many people heal and go back to normal life for this bs info to be true and it pisses me of that we have the cdc equivalent in our community.
P.S. Irony....After their venture to DC we have the new backlash by the cdc and the washington post. Just sayin.
{Rant Over}
Posted 6/19/2017 8:14 PM (GMT 0)
While there are a few that I am "concerned" about, some I know personally. For most of them, they are talking about a small subset of Lyme patients that have irreversible immune system damage from Lyme specifically. I haven't done all the research myself to know if everything they say is true, but I've done enough to be convinced that it's true for some.

That kind of backlash will come no matter what we do. If we do nothing, then this will only continue to get more and more dire as more and more LLMD's are punished for following the treatment standards that are up on the National Guidelines Clearinghouse - how nuts is that??? We don't have enough LLMD's as it is.

During the time I have been involved with the Lyme world, I've watched many doctors be brought up on false charges, people being called liars and worse for saying they have chronic Lyme, and personally have suffered from others actions because of what I have to say about chronic Lyme too. No one is safe from that, never have been and never will be - not until something changes.

While I don't agree with everything they say and every thing they do, I will support their efforts that I feel are justified because it's better to stand up for what's right, than to allow the CDC convince everyone (by bullying/scare tactics and prosecuting doctors for doing the right thing) that chronic Lyme is not real.
Posted 6/19/2017 8:34 PM (GMT 0)

Randy Eichner said...
The Lyme Cryme women are nucking futs! After questioning there overall perspective of lyme being treatable, I was ousted. I merely questioned their comments about lyme being unkillable and that people never feel better. I feel that a lot of their info is good but to say nobody has ever healed is outlandish at best since we all know many folks who have healed. My concern is their reverse fear mongering to lymies and making the blanketed statement nobody heals and if so where are they? To boot, they say that some people get relief with no treatment at all but also say healing is not possible and that rituxan is the only therapy. Most of their links posted are written by them and are overly emotional. Ive seen to many people heal and go back to normal life for this bs info to be true and it pisses me of that we have the cdc equivalent in our community.
P.S. Irony....After their venture to DC we have the new backlash by the cdc and the washington post. Just sayin.
{Rant Over}

Personally, if I had read something like that when I was first diagnosed with LD (chronic) - it would have devastated me...afte what I'd been through...I was happy to learn I had something treatable...and not a condition that symptoms had to be 'controlled' with medications...especially one for autoimmune diseases.

It does invoke fear....

Do they really say that nobody is healed? If that's true, it's hogwash... I know that now...not just forum members, but in the area I live - I know several people personally...
But, in the beginning of diagnosis..I didn't.
Posted 6/20/2017 2:23 AM (GMT 0)
At least one of them has demonstrated to me that she doesn't understand nor has really read the Lyme science. They are one of the reasons why the mainstream calls us "Lyme Loonies". I'm not a fan.
Posted 6/20/2017 3:38 AM (GMT 0)
You know, they have some interesting info but I find their dogmatism really off-putting (and I doubt it wins over many people in the lay public either, in fact their tactics may further erode lyme community credibility). If you don't 100% agree on everything they say they basically treat you with disrespect and like an idiot. Plus K really hammers home her credentials to push her argument (appeal to credentials is always a poor way to try and win an argument in my book). There are things to think about in their presentation but my 2 cents is that they try to straitjacket this condition into their own very narrow paradigm, which is kind of an ironical symmetry given that this is what they critique the IDSA for doing (which is justifiable critique). These are complex diseases and no one has all the answers I guarantee you that, if they are saying categorically that patients can't get better I think that is deeply problematic. Patients already struggle with hope, there is large variety in how these diseases affect people, no one can predict how things will turn out in each individual case but many people do recover and regain health.

Post Edited (sebreg) : 6/19/2017 9:46:59 PM (GMT-6)

Posted 6/20/2017 4:09 AM (GMT 0)
The unkillable and where are the people that heal i would like to meet one, were blanket statements. I watched a live vid K did this morning and it was emotionally chaotic it screamed major infection not under control, more out of control. This was the underlying feel of the web pages they were linking in the comments also. They are creating or have created a "Jim Jones" type scenario. When I tried to engage and question some stuff I was ridiculed and told to leave unless I had a straightforward question which I had several but they were never answered directly only trying to get me to read the web pages which were a joke.
Posted 6/20/2017 5:26 AM (GMT 0)
Melodramatics aside, the video Lyme Cryme gave me insight on "blebbing" and "shedding" how bacteria can behave like a fungus and splice itself to dna (still don't understand the mechanism exactly but who does?), and that is owing to a credentialed source citing valid studies. I can't help but empathize with women, people, folks who feel the system has failed (them). Many of us who are too ill to appear on camera because of tremors, phantom pains, anxiety, fear and all the symptoms that make this disease a sort of hell ride, it's brave on one hand but it does open one's self to the easy harsh criticism of the Internets. I don't blame anyone for seeking relief and treatment, however personal attacks shouldn't be encouraged.
Posted 6/20/2017 7:24 AM (GMT 0)
I agree BB,
However one must remain professional at all times and arguing and insulting lymies questioning ones perspective and or belittling them Is unacceptable.More so when its irrational. We should all be teaching and learning from each other.
Posted 6/20/2017 9:57 PM (GMT 0)

sebreg said...
If you don't 100% agree on everything they say they basically treat you with disrespect and like an idiot.

Yes one of them pushed their way into my FB thread and tried to over assert herself. I brought up the author and medical writer Pamela Weintraub (who wrote one of the best and most thoroughly researched books on Lyme....if you want to understand what the science says and doesn't say, it's the book for you). And she said that Pamela is an idiot and doesn't know anything. So then I asked this Lyme Cryme woman if she has even read the book.....and her answer was no.

They only have one narrow agenda to push and there is not a lot of science backing their position. If they have ideas on how to get people better, well that is great and welcome. If they are trying to strong arm everyone into thinking that the science supports their narrow agenda, well that makes us all look crazy and is very damaging to this cause.
✚ New Topic ✚ Reply