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Posted 3/22/2019 10:02 AM (GMT 0)
hall of fame pitcher has been in the news as he has dementia now.... below is article from 2013 about him having lyme disease, "winning the battle"...its depressing to know that this waits for us...bc even those in remission still have the bugs inside out brains in my opinion......then when we age we'll get parkinsons (michael j fox), alzheimers, dementia, als (gehrig had a summer home in wooded Connecticut)...here is hoping that there might be some advancements as i think any treatment at its best is just regaining some quality of life, not a cure...but i think most of us know this,,,ive talked to too many who were better while on 2 yrs of ivs to bc worse months after stopping...

https://www.nydailynews.com/sports/baseball/mets/madden-tom-nearing-terrific-day-mets-legend-winning-battle-lyme-disease-article-1.1289293#commentpostform
Posted 3/22/2019 10:15 AM (GMT 0)

dbwilco said...
Hall of fame pitcher has been in the news as he has Dementia now... it's depressing to know that this waits for us...because even those in remission still have the bugs inside our brains...then when we age we'll get Parkinson's, Alzheimer's, Dementia, ALS...

This type of post is:

- An opinion
- Not certain
- Unhelpful
- Likely to cause some folks even more anxiety

Obviously, it's your right to post such things. I would just encourage people to focus on stories that are more hopeful. If you look around, you will also find success stories.

Either way, I wish you the best.
_

Post Edited (The Dude Abides) : 3/22/2019 5:04:48 AM (GMT-6)

Posted 3/22/2019 11:32 AM (GMT 0)
I agree with Dude.... We don't need more anxiety on top of what we have already...

but i respect your opinion
Posted 3/22/2019 11:54 AM (GMT 0)
Seaver, despite his fame and cashflow, it seems like he may not have had proper diagnosis and treatment.

i suspect a lot of people in the spotlight, may have fallen to the same pitfalls that us common people have.

i am curious if he thinks his lyme is in remission or cured, and discontinued treating.
Posted 3/22/2019 2:48 PM (GMT 0)
This is such a stupid post. Just because someone got als or dementia from lyme it doesn't mean everyone will. Just like how some people get lung cancer without ever smoking while someone who smokes a pack a day doesn't. It all depends on your genetics and lifestyle.

What's the point of posting this? There are A LOT of people who have lyme but are asymptomatic. You're saying they will all get als or dementia?
Posted 3/22/2019 4:44 PM (GMT 0)

sierraDon said...
Seaver, despite his fame and cashflow, it seems like he may not have had proper diagnosis and treatment.

i suspect a lot of people in the spotlight, may have fallen to the same pitfalls that us common people have.

i am curious if he thinks his lyme is in remission or cured, and discontinued treating.

Yah - not enough info in the article.

“I'm taking 24 pills a day now, most of them vitamins, plus one penicillin pill to get my chemical balance back. It's a cycle that kills off all the spirochetes that junk up your system. It's been a slow process in which I'll still feel like I have a bad case of the flu for days, but these past couple of weeks they've been less and less. I haven't had a glass of wine or a beer in eight months and I don't miss it." “

One penicillin pill?
Doesn’t sound like a LLMD
Posted 3/22/2019 5:18 PM (GMT 0)
My intent wasn't to censor. Rather, I was suggesting people not spend their time speculating about things they have no way of predicting or controlling. Or, if they feel compelled to do so, perhaps do it in a way that doesn't get others unnecessarily spun-up. There's already plenty of sad stories, depressing news, wild speculation, conspiracy theories, and other things to either tie knots in peoples' stomach or send their brains into orbit with anxiety. But, as noted in my original response, I acknowledge their right (privilege) to do so. If I find it unhelpful, I'll simply comment accordingly. I have no ill feelings about it, though. We're just expressing our opinions.
Posted 3/22/2019 6:13 PM (GMT 0)

Girlie said...

sierraDon said...
Seaver, despite his fame and cashflow, it seems like he may not have had proper diagnosis and treatment.

i suspect a lot of people in the spotlight, may have fallen to the same pitfalls that us common people have.

i am curious if he thinks his lyme is in remission or cured, and discontinued treating.

Yah - not enough info in the article.

“I'm taking 24 pills a day now, most of them vitamins, plus one penicillin pill to get my chemical balance back. It's a cycle that kills off all the spirochetes that junk up your system. It's been a slow process in which I'll still feel like I have a bad case of the flu for days, but these past couple of weeks they've been less and less. I haven't had a glass of wine or a beer in eight months and I don't miss it." “

One penicillin pill?
Doesn’t sound like a LLMD

yeah you cant tell from the articles, but sounds like he may have not been treated appropriately.

i view this article as an example, not of what will happen, but a case of potentially mishandled lyme
Posted 3/22/2019 6:48 PM (GMT 0)
i apologize if the thread is considered offensive, not helpful, or a "stupid post"

that was not my intention

it was shared out of a place of personal frustration

i have contributed to the board for a few years now, and have never belittled anyone

mods, feel free to delete the thread if you like...i will not be posting again
Posted 3/22/2019 7:41 PM (GMT 0)

1000Daisies said...


Just be careful throwing out Michael J. Fox's name on this. As far as I know, he has never publicly stated the link between his symptoms and lyme disease. However, there is a lot of speculation that lyme is a factor for him, since he publicly stated in an interview that he had lyme disease. Whenever I point out that his Parkinsons symptoms were reported before his lyme disease was reported (based on his interviews) and gave those dates, nobody was able to dispute the issue with the timeline so far. (Sorry - I don't have the dates offhand but was talked on during previous threads.)
Of course, lyme may be a factor in his issues, but as far as we know, that is far from confirmed and the publicly known dates are not lining up. So, if we are speculating, let's make sure we say we are speculating.
If he has since come out confirming this, I would love to see the article on that if you have it!

Yes, MJ Fox had "parkinson's" prior to him publicly stating he had lyme disease. He did say he had a bullseye rash and "you feel like crap"

Here's the interview with DL

https://www.youtube.com/watch?v=dfpbgjqloeg&feature=youtu.be

I don't like the joking about it...
Posted 3/22/2019 7:48 PM (GMT 0)
Hi, dbwilco:

An apology isn't necessary. Many of us -- and, certainly/especially me -- are prone to rollercoaster emotions. Life is difficult enough, even when feeling well. Pile on feeling like crap, dealing with strained/lost relationships, spending lots of money, (being alone, jobless, and running out of money, like me), being unsure about which tests and/or treatments to try, making slow or no progress, etc., and it's easy to slip off the edge.

It was with all that in mind that I was trying (unsuccessful...or, perhaps, wrongly) to encourage you (and others who may read the post and be inclined to let such headlines derail them) to not get caught in such quicksand. It's easier said than done and I'm no Pollyanna or perfect. I struggle, too. Sometimes, though, when attempting to help others, I end up reminding myself of the same thing. I frequently get to take my own medicine. Sometimes, it's bitter.

My initial reply, despite meaning well, obviously fell flat -- with more than one person. I meant no harm and hope this interaction will not cause you to cease posting, or, worse, leave the forum.

Dude
Posted 3/22/2019 7:59 PM (GMT 0)
I can appreciate the request to keep the posting positive. But I also appreciate the honesty of this post. I grew up in a Lyme hotspot, always in the woods, lots of bites. I lost my best friend to ALS. He was in the woods getting bit with me too Now I have Lyme. Makes me wonder if his ALS was Lyme induced.
I also appreciate the warning about expecting a lasting remission from antibiotics . I spent 16 months on antibiotics, and gave them up due to lack of progress, and high chances of remission.
I haven't given up hope though. I'm trying other things that I feel offer more chance of a long term remission. Spent about 8 months on Buhner. Now I'm on BVT.
I know we all need to stay positive. I also have a firm commitment to truth. And the truth is a high percentage of people who go into remission from antibiotics go on to relapse. I think we can accept these difficult realities and still stay positive.

* Antibiotics are always the best thing to try first in my opinion. For lots of people they work miracles. But those of us who have done long courses of heavy doses without improvment, we have to make difficult decisions on how best to move forward. And cold, hard, posts like this have helped me to make my descision.
Posted 3/22/2019 9:04 PM (GMT 0)

1000Daisies said...
DUDE - you know I love your posts, wisdom, and sense of humor here! smile
But honestly, if we all posted on threads that we didn't find helpful; and told them so, then this would be a pretty negative board. There are many posts that I don't find helpful, but I certainly don't tell people that. I just skip them. I don't think any of us should be telling people what they should or should not be posting (as long as it's respectful and following the forum rules/etc). Some people just need to vent, and I can understand that need.
Just offering a different perspective. smile

And as always, I hope you are doing well! smile

Hiya, Daisies. It's good to "see" you again, as always. And, thank you for the kind words. Regrettably, I seem to be lacking in the "wisdom" and "humor" categories, of late. I'm in a bad slump.

Adding insult to injury, I was close to clicking the "Submit Post" button on my previous reply when my power dropped. Only this #@%* room, too. One breaker tripped, for some reason.

Ah, well. C'est la vie.

I don't have it in me, to try to recreate the prior couple of paragraphs, so I'll just say "Hello, I must be going."

Best wishes to you and yours, too.

Sincerely,
Dude
Posted 3/22/2019 9:42 PM (GMT 0)
dbwilco,

I did not take offense at your post and definitely understand where you’re coming from. We need to be able to speak out our fears and frustrations without being unnecessarily slapped for it. I pray you will come back and not quit. I have been offended or hurt by others’ posts at times, too. I guess it’s the price we pay for putting ourselves out there. I keep coming back because my desires to help others and be helped myself override my fear of rejection. That said, with the emotional fragility many of us have, rejection can hurt more and bring us down symptomatically, too.

I’m sorry you got hurt.
Posted 3/22/2019 10:59 PM (GMT 0)

dbwilco said...
i apologize if the thread is considered offensive, not helpful, or a "stupid post"

that was not my intention

it was shared out of a place of personal frustration

i have contributed to the board for a few years now, and have never belittled anyone

mods, feel free to delete the thread if you like...i will not be posting again

There is nothing in your post that warrants deleting or editing.

Please don’t leave the forum because of this thread.

You were not attacking/insulting a member - that is something the Mods would would/should put a stop to.
Posted 3/22/2019 11:07 PM (GMT 0)

1000Daisies said...
I respectfully disagree with a few PP. This board is already overly censored (IMO).

And I disagree with that. smile

As a Mod I edit posts very infrequently... usually when someone has insulted another member OR to remove contact information that has been posted (email addresses usually)
Posted 3/23/2019 12:29 AM (GMT 0)
1000Daisies - I don't take it personally....

and...I'm not irritated...or anything....no worries. smile

Yes, now and then a Mod from another forum will post - if they happen to see something.
But, it really is infrequent.

I honestly can't remember what that post/thread was about now...lol.

Thanks - I am trying to spend less time on here....it's hard though!!!
Posted 3/23/2019 1:12 AM (GMT 0)

Girlie said...
I honestly can't remember what that post/thread was about now.

This is it: https://www.healingwell.com/community/default.aspx?f=30&m=4021432&p=2
Posted 3/23/2019 1:22 AM (GMT 0)
Thanks, Dude...oh yes, now I remember.


My post is gone!!!


I have to say that I'm not happy about the fact that now we can only post 'positive's ' when talking about a certain center. It does 'skew' things....

Now, this post of mine - is hidden...so it shouldn't get deleted...hehehe
Posted 3/23/2019 6:40 AM (GMT 0)

1000Daisies said...
I don't understand - why is that post of yours hidden? Did you hide it or somebody else hid it? And if somebody else did, tell me how exactly it broke the forum rules (because it didn't, right?)?!? Are you saying somebody else censored? Or you did it to your own post? smile

Yeh, that's pretty serious. I purposefully did not link to that thread intentionally. This isn't the only example. But I have no desire to bring up the others honestly.

And I don't know if we can say how frequent this occurs. Even you didn't know those certain posts were deleted. So, how do you know what we don't know? LOL I've seen other posts/threads gone, and if people didn't read it before it's gone, they are in the dark about it. smile

When I said 'hidden' - I'm talking about my post on this thread - that has nothing to do with that certain clinic.....

Daisies - posts, threads aren't usually deleted...and the other Mods don't often come on the Lyme forum to post.
I've been here a long time...and rarely are posts deleted....
Sometimes they are edited...ie if they have posted their personal info....or if they have broken other rules....

There was a reason that one thread was censored - (about a certain clinic) - it's not something that is done often....
Posted 3/23/2019 12:06 PM (GMT 0)
Essentially healingwell promotes indirect bias of clinics and docs, since any negative feedback is censored.

Which sucks for people looking for objective feedback, so this site is not the place to look for that.
Posted 3/23/2019 5:37 PM (GMT 0)

sierraDon said...
Essentially healingwell promotes indirect bias of clinics and docs, since any negative feedback is censored.

Which sucks for people looking for objective feedback, so this site is not the place to look for that.

The censoring of negative feedback was on one particular clinic - if you want more info/reason you can email me.

There are plenty of posts from members critiquing clinics and they’re not all positive reviews.
Posted 3/23/2019 8:27 PM (GMT 0)

1000Daisies said...

Girlie said...

When I said 'hidden' - I'm talking about my post on this thread - that has nothing to do with that certain clinic.....

You didn't really answer my question. Who "hid" your post reply?


When I said my post was hidden - I was talking about the one on this thread - meaning it wouldn’t stand out or be seen at a glance because it’s not on a thread about a particular clinic.
No one actually “hid” it.

My post on the other thread disappeared - was deleted - not sure who or why ...
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