**moving to general support**
Posted by Robin123 (Member # 9197) on :
Anyone here use Twitter? He's actively asking - you can click on a link in the article and respond directly to him!
He's reporting fatigue, lack of sleep, never been sick before, done every test, doctors can't figure it out, like a heartbeat thumping in his head all the time, low blood pressure.
Posted by daphnesmom1 (Member # 39433) on :
Yup, my husband and I both saw it and agreed he should be checked for Lyme.
Posted by Lymetoo (Member # 743) on :
Gotta get a message to him!!
Posted by Lymetoo (Member # 743) on :
He was a childhood favorite of mine. I just love him!
Posted by droid1226 (Member # 34930) on :
I tweeted him. It's been in the news lately that lyme is all over Santa Monica and he lives in Malibu(a town over).
Well. No better way than to get this mess fixed than to get a few celebs to go chronic. Sadly.
I think the mayor of Boston(Menino) is a no brainer lyme candidate.
Posted by payne (Member # 26248) on :
i had that lay down head pain and His eyes are burning up/RED Prayers for the answer to arrive soon for Him, many were brought laughter from His energy.
Posted by Robin123 (Member # 9197) on :
Chim chimminey, chim chimminey, chim, chim, cher-ee, Unlucky if ticks bite, Lyme ills it can be, Chim chimminey, chim chimminey, chim, chim, cher-oo, Don't sweep away hope, hope our message gets through!
Updated for closer match to song lyrics...
[ 04-19-2013, 06:51 PM: Message edited by: Robin123 ]
Posted by payne (Member # 26248) on :
Posted by poppy (Member # 5355) on :
Hey, Robin, send your poem to him. He will love it.
Posted by Lymetoo (Member # 743) on :
Cute one, Robin!
Droid can send it to him .. or anyone else who Tweets!
PS .. What is "officially" wrong with Menino?
Posted by Lymedin2010 (Member # 34322) on :
I tweeted him as well & gave him link to "Under Our Skin."
Can we get this thread going with more information & then tweet him this link?
Posted by Lymetoo (Member # 743) on :
Lymetoo, Meninino has has soooooo many diagnosis' the past yr. He is now wheelchair bound. But he was originally sick with gut inflammation that turn into an "ongoing infection" they called it.
So it's been Crohns, lupus like illness, flu/pneumonia like symptoms since last last yr, quick onset diabetes 2(that's the one they are concentrating on now)....the list goes on.
They are just pumping him up with steroids and propping him up for public events.
Posted by Rivendell (Member # 19922) on :
I still can't believe that we have to go "underground" to get treated properly.
It makes it hard for people to believe because it sounds so crazy.
Yes, I wish more celebrities with lyme would join the campaign.
I grew up watching him, and still love his comedy. I hope he finds the answer, and he should find a good LLMD to be checked out properly.
Posted by Lymedin2010 (Member # 34322) on :
Dear Dick Van Dyke,
First off, my condolences and sympathies on your current condition. You have entertained Americans and many of us starting from childhood, so you hold a sacred place in our hearts.
Many of us here understand what it is to be in an ailing condition. Your story sounds very similar to the many stories that I have read & it is similar in part to my story as well. Keep in mind that with this subject matter, that each person's circumstances are slightly different, since the subject at hand is VERY complex. To fully comprehend the intricacy you will need to dispel all prior and biased notions of the subject & start a fresh course.
The complexities cannot be fully described in a single thread or a few paragraphs, but will require your undivided attention and continued reading and gathering of pertinent information. After all, it is your life & your health, what better person to seek the truth? This was the case with me & how I discovered what it is that I have & also true for many others on here.
I have a very interesting perspective on this, since I held a biased against this too. My sister had it & I just could not understand. She got better and I simply dismissed it. Many people around me started to have similar, but different health issues and we all had a common theme. My daughter came down with it as well after 2 1/2- 3 years of her event that led to it.
We started off with only 1-2 symptoms, which got progressively worst over a LONG period of time; from months to years for many. As new symptoms arose, new doctors were involved (Neurologist, Optician, ENT, Infectious Disease Doctors...& the list goes on). Doctor after doctor, of all sorts, was unable to diagnose us. Some visited 30-50 doctors without a single clue before they discovered the truth & therein is the problem of the growing new EPIDEMIC. No one listens or cares to understand. That is until you are lucky enough for someone to point you in the right direction or reach a point where there is nobody to help but yourself and your willingness to live.
Test after test, from blood work, CAT scans, MRI's, Xrays, ELISA tests and the likes yield no clues. If it had just happened to me, I would have kept on going and would have been in a wheelchair by now, but since similar stories happened to individuals in my neighborhood I was motivated to find the answer.
Little did I know about the true nature of my discoveries and what further information I would gather down my path to seek the truth. Keep in mind that as time progressed I did more research, interviews, and exchanged information and it gradually became clearer and clearer. Once it all came together I felt betrayed, disgusted, appalled and as if I was living in the Twilight Zone. How could something like this be allowed to continue to go on? With months of information seeking, I still learn something new every day, as do many others on here.
Do not stop at the first description or first few stories that you encounter. Some symptoms will overlap with yours & others will not. I was able to find a few persons with my almost exact and identical story.
There are doctors, medical journalists, and teachers/scientists who have experienced the traumas of this epidemic & they now understand. They have devoted their lives to this cause & rightfully so. There is a common saying in the community of individuals who understand this & that is that ``You don't get it, until you get it!'' I would go on to further say, ``You don't get it until you get it late stage!'' Early on during my first few symptoms, there is simply no way I could tell with certainty. Tests were unreliable for me during late stage, so imagine if tests were done early on during transmission and with no symptoms to barely any symptoms.
There are other famous individuals in the Hollywood arena who have also been stricken with this & you can further read their stories. Some of these individuals are: Michael J. Fox, George W. Bush Jr., Daryl Hall from Hall & Oaths, the daughter of Rosie D'donnell, & David Letterman. There are many others & I am sure many who do not wish to disclose this information. It is not a problem of the poor or middle-class, or one only in the USA. It is a global epidemic & the numbers of individuals infected is growing by the day and by the thousands.
To get you started on your journey and enlightenment you can start off by watching a very important DVD documentary called ``Under Our Skin.'' You can buy the DVD or watch it for free here: http://www.hulu.com/watch/268761
There is a science journalist who wrote on the subject matter, but she could only write to her public audience what she read and interpreted in the literature. Her family started to come down with mysterious health issues one by one & she had been to doctor after doctor with no answers. She finally came across someone who pointed her in the right direction & then she did hundreds of hour's worth of research & interviews. Her name is Pamela Weintraub & she has written what I believe is the best book on the rampant illness, ``Cure Unknown.''
Don't let your journey stop you there & continue on reading. There are many great people on here who are willing to help one another & who are a great source of information. Unfortunately, we are left alone in this battle & we have become our greatest supporters. If /when you do become enlightened, then please spread the word and warn others. Think of all the children that are wondering around without their parents having a clue to the true dangers that await them. If you should happen to need any further information you can contact me at [email protected]
There were individuals who were bed bound & ones who were in a wheelchair, even a doctor in particular. Long term antibiotics helped them get back up again & regain their lives. We can put together their links & stories so it will hit home further. You can do your reading and see for yourself, you will be your best judge.
Thanks for reading & happy healings.
Posted by Robin123 (Member # 9197) on :
Well, I am going to sign up for Twittering soon, so will see what we can do.
Good letter, Lymed!
Posted by droid1226 (Member # 34930) on :
Robin, it's the only way to get to celebrities without physically seeing them.
Even celebs like Will Smith and Alec Baldwin who have millions of followers have admitted to reading all the people that tweet them.
You just have to have some brevity cause you gotta say what you want in 140 characters or less.
Posted by OtterJ (Member # 30701) on :
Doesn't Ben Stiller have this as well?
Posted by Lymedin2010 (Member # 34322) on :
Yes he does. He got bit & revealed it on David Letterman. Ben's son got Lyme on the East coast & that is most likely where Ben got it too.
"Here is a rough transcription of the portion of the interview between Ben Stiller and David Letterman that deals with Lyme disease:
David Letterman got bit in his own fenced yard & had to have a heart operation.
DL: I am fascinated by this and I hope you are going to be okay... You have an injury and when I heard about the injury and I was surprised that you are even here because quite frankly... I wouldn't be here with this type of injury.
DL: Can you talk about it?
BS: I can talk about it and it has actually improved so much in the last 24-hours - but I almost couldn't come until yesterday when I got the go-ahead. I was in Africa about 3 1/2 weeks ago and I stepped in a ditch in Mozambique and it was a hidden ditch. I didn't intentionally step into the ditch. I was in a village and I stepped into it and it was filled with mucky water and I hyper-extended the back of my knee.
BS: It got stiff and got worse and worse and I came back to New York...
DL: Painful?
BS: Painful and I couldn't really move it too much and I went to a Doctor here and they did an MRI; they discovered some arthritic elements [ by the way Justin Bieber is going to tell the same story - laughter ]...
BS: Anyway it got worse and worse and then I went back home to Los Angeles and went to see another Doctor -- and then my friend sent me to this knee guy... apparently the best knee guy. He looked at it and said that, "You know, you have a lot of fluid there and we have to drain some of the blood out basically.
BS: So he did it... and stuck a needle in it and pulled out the blood and I was like, okay... and I looked at him -- and he had this look in his eye and he was looking at the needle and he said, "This isn't blood."
DL: Well, this sounds like a bad science fiction film... [ laughter ]
BS: It does, doesn't it?
DL: So what is it?
BS: I said to him, "What is it?" and he said... "I don't know." [ laughter ]
DL: What is it... Mountain Dew? Honest to God -- for heaven's sake!
BS: I would think they would know!
BS: They have been doing cultures on it, they took 2 more samples and they think it may have gotten infected -- they're not sure. Then literally up until yesterday I was saying, "I have to do the David Letterman Show" and they said, "That might not be a good thing for you... for the knee." [ laughter ]
DL: I understand that... Many people feel that way!
BS: And so then he sent me to a Rheumatologist and he sent me to an Infectious Disease guy... a Rare Disease guy and they all started taking blood and doing all theses tests and then I got this call about 2:00 p.m. in the afternoon yesterday very excited and the guy said, "Have you ever had Lyme disease?"
BS: And I said, "No, but I was on the East Coast last summer and my son had Lyme disease..."
BS: And he said well... its looking like this might be Lyme disease.
BS: And I've never been excited, ever to have been told that I had a disease... but because he was saying that if it wasn't then I'd have to have an orthoscopic procedure done if I didn't have it so if it is Lyme disease then I won't have to have that procedure done.
DL: If it is Lyme disease I would think that perhaps there would be other symptoms? Are there other symptoms?
BS: There are like night sweats and stuff like that... so I have had mild stuff but nothing too bad. So now he's put me on this drug for the knee, an anti-inflammatory and I might go on another drug for the Lyme disease. I came in on the red-eye and I didn't get too much sleep so if I am a little, you know...
DL: You're fine!
DL: This is very interesting and one of the fascinating things about medicine because you think: he's in Mozambique and steps in a ditch... Oh, something that wouldn't befall you if you were in Los Angeles.
BS: Exactly and you have to rule things out and he's said to me, "You know... no one wants to be a medical enigma -- but you are!" [ laughter ]
DL: And the pain is gone and the anti-inflammatory...
BS: Yeah and the anti-inflammatory seems to be working really well.
DL: So how did your son manifest the Lyme disease? What was his symptoms?
BS: He just got a little bite or something and he was fine. They just gave him this Lyme disease drug... I don't know what it is. [ laughter ]
DL: But, in California I don't think that you can typically get Lyme disease out there...
BS: No... It's an East Coast sort of thing.
DL: Boy, Its nasty because as I understand it there are 2 or 3 ticks and any one of them can carry like 2 or 3 diseases and it makes you crazy... so you need to get a good immunologist.
DL: Well, I'm glad you're doing well!
BS: Thank you very much.
[ break for commercial - end of discussion about Lyme disease ]"
Posted by Lymetoo (Member # 743) on :
I think Ben did have it.
Good job, LymedIn!
Posted by Keebler (Member # 12673) on :
- I don't tweet, don't even have a cell phone.
In addition to TBD, I hope he'll consider any new mattress or any work having been done on his home - for the chemicals involved - &/or mold.
Still, any good LLMD will consider this with a full assessment. Hopefully, he can find what's going on and get back to a good energy.
He's sure brightened up my life with his talent and cheer. I hope that can come back for him.
It is absolutely amazing to me that doctors let even someone so nice and famous as he is slide through the cracks and just give up on him. Doctors are supposed to be good medical and environmental DECTECTIVES, too. At least I thought so. I believe they should be. -
Posted by Lymedin2010 (Member # 34322) on :
Haha, I never tweeted & vowed never too. I was simply sad for him & it got me motivated to open account and hopefully he would listen.
I don't even like the limitations placed per tweet, because then you gotta multi-tweet consecutively & it seems like your an aggressive psycho then.
I was doubtful that anyone would really listen, unless they get late stage & multiple symptoms.
I went on for years with symptoms that I thought were in the bounds of normality. I never considered or cared about Lyme back then. I did not seek answers until it got so bad that I felt like I was about to drop dead & only then I knew something was terribly wrong. There had to be an answer.
When I think back, I am shocked at myself how I could not have even considered that to be a possibility & how could one? The same way that others are doing this right now. I am them & they are me in the earlier stages. This is the only way I can understand this through the eyes of what I have learned and experienced.
Posted by Lymetoo (Member # 743) on :
DL: But, in California I don't think that you can typically get Lyme disease out there...
BS: No... It's an East Coast sort of thing.
-
Sure, right.
Posted by droid1226 (Member # 34930) on :
Tweeting isn't some young newfangled thing that you should vow not to do. It's not Facebook which I know can be a massive invasion of privacy.
It's a great way to communicate with other lyme patients and also be heard by people who can make change happen....Politicians, celebrities, and even quite a few lyme Dr.'s are on twitter.
You don't have to put your full name on there, heck, you don't even have to a real name on there. You never even have to Tweet if you don't want to, just listen to others, just like on here.
This disease is never going to get any recognition unless lyme patients galvanize. Twitter is an incredible tool for that.
Posted by droid1226 (Member # 34930) on :
One more thing. While these Boston events were happening, Twitter was a good hour in front of any news channel.
So if you are inclined to watch the news(yuk), it's by far the fastest way to get information.
Posted by jessicabooklover (Member # 39427) on :
Droid is correct. Twitter is an amazing source of real time information and I have connected with several lyme patients on there who have helped me a lot.
Twitter is not just a silly thing that "the kids" do. It is an amazing resource for people with lyme and it is a great way to get our voices heard in a big way. We cannot sit back and complain about the lack of info out there for TBD if we do nothing to remedy that.
Just my two cents. jess
Posted by Lymedin2010 (Member # 34322) on :
I agree NOW
Tweeting is damn fun, informative & addictive, no harm that I can see. Especially if you use a pseudo name. I always associated it with Facebook & people getting in on your biz.
Hey, I tweeted Pamela Weintraub & asked if she is coming out with a new book....her response....."Update coming late spring. Will be published as new edition and update alone will be 99 cent ebook"
Gonna make a new thread.
Does Wild Condor have a tweet account? I always wanted to talk to her.
Posted by Lymetoo (Member # 743) on :
WC is on Facebook.. maybe you can find her there and ask.
Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by Lymetoo: [QB] DL: But, in California I don't think that you can typically get Lyme disease out there...
Just reporting in that thousands of us ( ) here in CA atypically ( ) have Lyme. Posted by Lymetoo (Member # 743) on :
You're just delusional, Robin... You and all your friends!! Posted by Robin123 (Member # 9197) on :
Yeah, tell David and Ben I had a delusional tick bite, delusional symptoms, delusional positive test, delusional drop in pain and blood indicators, and attend very collectively delusional support group meetings! And everywhere I go around here, am finding more and more folks sharing our delusions...
Posted by Love my kids (Member # 32876) on :
So I tweeted him. Here's hoping he pays attention to those who have reached out to tell him to look into into ILADS and Under Our Skin
Posted by beaches (Member # 38251) on :
I seriously doubt Letterman and Stiller would take anything sent via twitter seriously.
In fact, they likely personally don't read the vast majority of what is sent to them via social media to begin with.
And if either of them really had any serious TBD illness at all, we likely would never hear about it.
I wouldn't waste my time tweeting or FB'ing these people.
Posted by droid1226 (Member # 34930) on :
Beaches, Dick Van Dyke came on to Twitter asking for advice what could be wrong and then thanked everyone for the responses.
Tweeting Letterman and Stiller is better than doing nothing.
Posted by Lymetoo (Member # 743) on :
Letterman came on TV several years ago telling how ill he'd been from Lyme. He was quite ill.
Posted by Lymedin2010 (Member # 34322) on :
Well, at least Letterman & Daryl Hall speak about somewhat knowledgeably. They now understand the dangers, although the still don't understand the full details.
Daryl Hall seems to know more, since he was sicker longer. I think what happens is the longer you remain sicker, the longer you look for answers & clues that lead you to the true nature of what we are dealing with.
Tweeting Dick Van Dyke was not a hit, but hey it was worth a shot. It is hard to convince people who do not exhibit multiple symptoms. I wonder what I would have thought if someone tried to convince me.
People were getting bit around me, yet I had Lyme & still did not know it. Did not care enough to even read about it, so I know the ignorance of having your health or what you think of healthy to be.
The people around me, even the ones that have gotten bitten & fallen ill temporarily still do not get the full picture. It is soooooooo hard to convince people.
I had IIH & had no way of really knowing it was Lyme. I was suspicious only because so many people around me were getting bit & had various symptoms. I try to help & convince the IIH group, but DAMN it is so hard.
Pamela Weintraub is so right in her view. I felt a sense of a loss of hope when I reached the end of her book. Slowly I have seen this for myself.
This is going to be a long battle & ironically what needs to happen is that MORE people need to get sick with Lyme in order for any substantial action to be taken.
Do you recall when AIDS first came out in the 80's? People thought that it was a gay disease, but then celebrities started coming out & this one kid, Ryan White had it via blood transfusion. After that people started to take it seriously. Throw in a few celebrities & you can wake up the world.
We need our Ryan White, a Dark Knight to substantiate to the world the seriousness of what has truly transpired.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Robin123:
Yeah, tell David and Ben I had a delusional tick bite, delusional symptoms, delusional positive test, delusional drop in pain and blood indicators, and attend very collectively delusional support group meetings! And everywhere I go around here, am finding more and more folks sharing our delusions...
Exactly, Robin!
LymedIn.. well said.
Posted by Robin123 (Member # 9197) on :
Well, what a relief to be here, after all the delusional things that were said to me, and to us, over the years...
Lymedin2010, what is IIH? So here's what I've found works the best for me - I go into fibromyalgia groups, which was my old diagnosis, and let them know that MY fibromyalgia turned out to be Lyme disease.
I don't tell them that their fibro is Lyme, since they then say that their doctor told them they have fibromyalgia.
That way, those who are actively looking or ready to hear contact me for more info. The rest aren't ready or aren't looking for other answers.
Maybe it'll take having to hear it 10 times before they start to wonder. So I always figure my communication could be one of those ten, and do not consider it a failure if they fail to pick up on it the first time.
One more thing, Lymed - sadly, you're right, I think, about more people having to get it in order for people to pay attention.
And one reason why more are going to get it is it is so easy for people to ignore this, even when told about it, 'cause they just don't get it - it's the antithesis of normal living and normal habits,
and I've seen so much stubbornness out there, even when people are being told what to do by Lyme patients.
I think it's partly the thought that it won't happen to them, the odds are against it, and that's a mistake for two reasons, I think - first, the ticks are out there and it is happening, and second, we are talking about the possibility of even just one infected tick bite.
That's my experience - I was bitten by one infected tick. I ran around for 25 years, in nature, with pets, and was never bit again. I was lucky in that way. But all it took was one, and that's the concept I stress with new people.
Unfortunately, many are going to have to learn the hard way, for not paying attention.
Posted by beaches (Member # 38251) on :
I think the vast majority just are invested in their fibro/CFS/MS diagnoses b/c they grew up in an environment where docs were God and were told to not question.
Thankfully, some of us who grew up in that era escaped that brainwashing. Whew.
As for AIDS, I personally think that having very famous and wealthy people come out of the closet not only helped that cause, but brought it into daylight and raised millions for the cure.
Sure, Ryan White raised awareness and funds but the gay community took it to where it needed to be which is why AIDS is no longer the scourge what it was back in the 80s and 90s.
Posted by beaches (Member # 38251) on :
LT I didn't know that. But honestly, has Letterman done anything at all re: Lyme Disease (esp since he lives in CT?) If he did I sure didn't hear about it.
Droid, I vaguely remember Stiller on Letterman's show and thinking that he was useless, if not worse.
I still just don't see any point in tweeting or FBing these people.
Posted by Lymedin2010 (Member # 34322) on :
Guys so many people need our help. Take a look at this heartbreaking video.
I am going to make a new thread & see if we can help her, poor thing!
Posted by Rivendell (Member # 19922) on :
I wish more celebrities would speak out who have had this, but honestly, they may be worried about their reputations. Don't want to be perceived as delusional.
I think Dr. Phil is the best hope.
I wish he would follow-up on what he did last year. In fact I wish he would get more involved.
When Dr. Phil says Chronic Lyme Disease is real, people listen.
Posted by Lymedin2010 (Member # 34322) on :
What ever happened to Richard Gere, he had Lyme? Did he ever speak publicly about it, do we have any clips?
I recall seeing a quote from him & he mentions it is was a scary disease.
Come on Richard, you can sweep all those girls off their feet...convince them of the true dangers!
Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by beaches: [QB]
Sure, Ryan White raised awareness and funds but the gay community took it to where it needed to be which is why AIDS is no longer the scourge what it was back in the 80s and 90s.
The AIDS community formed two ACT-UP activist groups, from what I recall, and did some very public actions, one of which was spilling blood from AIDS patients on the Capitol steps in Washington - that's the one I remember.
They also organized furiously across the country for their needs. Here in SF they now have organizations that are a couple decades old and medications that keep people alive.
When I see all that, I'm reminded that it can be done. But people have to fight for their needs, not say nothing.
Posted by beaches (Member # 38251) on :
And the AIDS community also had some pretty heavy-duty funding for its cause, and eventually some pretty heavy-duty celebs fighting for its cause too.
That movement, largely based in SF and NYC also garnered an enormous amount of media attention, which didn't hurt the cause either.
I remember a lot of zealots claiming that AIDS was a punishment from God because of a particular lifestyle, and that sure infuriated so many people.
But it was relatively easy for the public to eventually marginalize those who believed such a horrible disease was punishment from God.
It's not so easy to marginalize an organization like IDSA. And it's not so easy raising funds from people who are basically broke from TBDs. And it's more than a little frustrating that some major celebs have dealt with TBDs and say little to nothing.
Lyme rallies have been going on for years. And this disease has been around at least since the 70s. Remember that woman (gosh, forget her name!) from Lyme, CT who worked tirelessly to get Lyme Disease acknowledged and recognized?
Many, many other people have been activists and worked very hard to get legislation passed.
As horrific as AIDS/HIV is and was, thankfully people with these diagnoses have a shot at a full and healthy life.
Unfortunately, our community can't say the same thing. YET.
Posted by beaches (Member # 38251) on :
Polly Murray.
Posted by Robin123 (Member # 9197) on :
I read her book, "The Widening Circle," early on. Isn't it amazing that we're still at this level of unawareness 40 years later?!
All the more reason to take actions in May! Posting flyers about Lyme Disease Awareness month with useful urls is a simple thing to do. Pass out slips of paper - I started with 1/8 size slips announcing the spread of Lyme and co's and a couple websites.
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[Eek!]](eek.gif)
Just reporting in that thousands of us ( ![[bonk]](graemlins/bonk.gif)
) here in CA atypically ( ![[confused]](graemlins/confused.gif)
) have Lyme. ![[dizzy]](graemlins/dizzy.gif)
![[Roll Eyes]](rolleyes.gif)