Baldelli's issues: "Abnormalities" that cause extreme fatigue Rocco Baldelli will be sidelined indefinitely - but is not retiring - because of what he said are "some type of metabolic and/or mitochondrial abnormalities,'' a condition that leaves him feeling extremely fatigued after just a brief workout.
"When I say "fatigued" my body is literally spent after a very short amount of time out on the field which makes it extremely frustrating and difficult, but it's kind of a reality right now,'' he said during a 13-minute session with reporters before Wednesday's game. "I feel like I've done a serious workout after a very short period of time, and it's a very odd feeling. ... I try not to be too dramatic when I explain what's going on, but it's not easy when you're out on the field for a very short period of time and you're done, and you're not really worth anything else out there. That's a tough thing to handle because you wonder why. You wonder why this is how your body feels.''
Baldelli, 26, said there has been no exact diagnosis but the consensus of several experts was the rare condition that limits the ability of his muscles to recover. "Basically somewhere along the line ... either my body is not making or producing or storing ATP the right way and therefore not allowing, apparently, my muscles to work as they should, and especially recover like they're supposed to on a day-to-day basis. It becomes very difficult to go out and literally be on the field every day and play.''
ATP, according to the website health.howstuffworks.com is a chemical, adenosine triphosphate, that is the energy source for muscles and "in order to continue exercising, your muscles must continuously make ATP. To make this happen, your body must supply oxygen to the muscles and eliminate the waste products and heat. The more strenuous the exercise, the greater the demands of working muscle. If these needs are not met, then exercise will cease - that is, you become exhausted and you won't be able to keep going."
Baldelli provided this description: "I think the best way to describe it is literal muscle fatigue and cramping way before my body should be feeling these things. I would go out there and I was pretty much incapable of doing basic baseball activities, running and hitting and throwing. These were things I had done my whole life pretty easily and at some point within the last two years, we're not exactly sure why, these things started to change.'' Baldelli moved to verge of tears several times in discussing details of his condition for the first time. He indicated he did not consider the condition life-threatening, saying "it's not something I'm overly worried about as far as on a long-term basis right now. And he said he would do "everything in my power" to get back on the field, but there was no timetable for a return, whether this season or ever. The Rays will place him on the disabled list to start the season and "identify" a replacement to be part of a platoon situation in right field and provide depth at the other spots and DH.
"As far as my baseball career I'm not here to stand in front of you telling you I'm retiring,'' Baldelli said. "We're still going pursue any avenue that we can to try to figure out what is going on and have a better understanding of what is going on. But at this time throughout all of the extensive testing that we've done, we don't have a concrete answer. The doctors' consensus is these are the problems that I'm experiencing and there's probably a lot of medical proof of these things but they have been unable to specifically identify an exact reason or an exact problem down to a specific name. That's kind of frustrating.''
Baldelli said he will remain on the disabled list "indefinitely until we find out something else that could possibly improve my situation.''
Executive vice president Andrew Friedman termed Baldelli's condition "extremely rare" for professional athlete but said the Rays will work diligently to find a way to get him back on the field. "The most important thing is I think all of us are cautiously optimistic,'' Friedman said. "I don't have a medical reason to feel that way, but I know with Rocco's determination, with our training staff, with modern medicine the way it is, I refuse to believe there's not a way we can figure this out. It may prove to be naive. It may prove to be right. We don't know yet.''
Baldelli thanked the Rays for their support, saying "this is probably as difficult and frustrating a thing I've ever had to deal with as a person. And we're going to do everything we can to fix and hopefully solve this problem.''
Before Baldelli spoke, Rays manager Joe Maddon offered this perspective: "It's tough to figure out. It's something that he feels. It's something that unless you're inside that body you have no idea what it feels like. And it's unfortunate because you're talking about a gifted athlete right here. One of the more gifted athletes I would think in all of the American League given a chance to play on a daily basis. So it's hard. It's hard for him. It's harder for him than for us. It's frustrating for us, it's a career for him. It's a way of life. It's supporting his family in the future. It's difficutl. So we're just trying to pay attention to him and respect, because you have no idea what he feels like and it's frustrating. But it's even more frustrating for him.''
Baldelli, 26, has been sidelined since sustaining a hamstring strain in a May 15 game, and has played just twice this spring, last on March 4, because his legs haven't recovered well and don't feel right. "It's not really encouraging right now, it hasn't really been progressing,'' Maddon said before Wednesday's game. "It's one of those day by day situations and it's not moving forward.''
Rocco Baldelli didn't know much about Lyme disease until it hit home.
Baldelli, the Devil Rays star outfielder, tested positive for it in high school and missed the state baseball championship.
"It was a pretty rough experience," he said Saturday.
Lyme disease, named in 1977 after children in Lyme, Conn., inexplicably showed signs of arthritis, is caused by the bite of a tick carrying a rare bacterium.
Baldelli said he was so fatigued he felt as if he were on prescription medication. He would lay on his couch and doze all day. He tested positive for mononucleosis and a strain of meningitis. But he also had a red mark on his right leg - an insect bite - and tested positive for Lyme.
"It very well could have been Lyme disease because I was always in my back yard, out in the woods and stuff," he said.
Infection is most common in the late spring and early summer; ticks are more active and people are outdoors more. (It can't be passed from person to person). It usually takes 7-14 days for symptoms to appear. They often include a red, slowly expanding "bull's-eye rash," tiredness, fever and joint pain, according to the Centers for Disease Control and Prevention.
If untreated, patients may develop arthritis and neurological abnormalities such as facial palsy and inflammation of the brain. In rare cases, Lyme disease has led to heart problems, such as inflammation of tissues around the organ.
There were 23,763 reported cases in the United States in 2002, according to CDC data. Most were in upstate New York, Connecticut, Pennsylvania, New Jersey, Massachusetts and, Baldelli's home state, Rhode Island. Just 79 cases were reported in Florida. But the CDC says the disease is "greatly underreported."
It's also misunderstood ... until it hits home.
"It was over a month before I even started to feel better," Baldelli said. "I honestly didn't do one thing for a whole month. I sat in my house. I didn't really feel better until the end of the summer."
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-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
That article says it all to me, lymie. He still had a few cysts left from high school, or maybe he was reinfected sometime and wasn't aware, but he almost certainly has Lyme again.
Posts: 975 | From California | Registered: Apr 2007
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posted
I looked to see if he had a MySpace and only found this video of him on Myspace. There is a place to leave a comment. Maybe you could leave a comment there and hope he or someone he knows looks at it.
Interesting statement by Marnie (wish my brain worked better, but somebody else can probably understand it!)--"Very little ATP is being made in the cells in which Bb infects because those cells and Bb are relying on glucose, not oxygen to -> ATP."
I would bet that he never got rid of borrelia..not to mention co-infections. Posts: 136 | From North Carolina | Registered: Apr 2007
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Clarissa
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posted
Holy Cow! Great info, guys! Why isn't any doctor asking about his past? He's definitely relapsed!!
I pray my letter gets to the St. Petersburg editor...I'm going to try again with Bob's story attached.
Poor guy...this is unbelievable, truly ignorant!!!
posted
I'm sure he wasn't treated long enough to get rid of it the first time.
Good job , you guys!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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feelfit
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posted
Wow Clarissa, Bob, good work. Clarissa i hope that your attempts at contacting this athlete are successful.
Sounds like lyme never left him and now he has relapsed....I feel so bad for him, at least you have found a way to give him hope!
Lets pray that contact is made.
You're awesome Clarissa, Feelfit
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Clarissa
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I've written 3 different emails to the 2 senior editors od the St. Petersburg Times but I'm going to do some more digging tonight.
This is an outrage that not ONE doctor has pieced this together...and the poor guy is in the PLAYOFFS and maybe the series (except I'm a huge Red Sox fans, so let's leave it at the playoffs).
It just saddens me so...I'll keep pecking away and keep you guys posted!
posted
He should see Under Our Skin... didn't it also have a famous baseball player who was misdiagnosed for awhile?
Posts: 129 | From Virginia | Registered: Feb 2008
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Many remain amazed that the Tampa Bay Rays are preparing for the American League Championship Series. That Rocco Baldelli is doing the same might be more miraculous.
"It's tough to explain how I feel," Baldelli said Monday amid the champagne celebration after the Rays' first postseason series victory, vs. the Chicago White Sox. "I didn't know how this would feel. I couldn't be more happy."
While the Rays' worst-to-first story casts them as the low-budget upstarts against the well-monied, defending champion Boston Red Sox, Baldelli's mere presence on their playoff roster signifies clearing far more daunting hurdles.
Once among the game's most anticipated five-tool prospects, Baldelli's career was sidetracked by four years of injuries.
'Scared to death'
Team trainer Ron Porterfield recounts the day in the middle of last summer when he took a 4 p.m. phone call from the Rays' outfielder.
"We hit rock bottom together," recalls Porterfield. "He was on rehab assignment with our A-ball team in Vero Beach (Fla.). He was crying. He said, 'Something's not right. My legs hurt so bad I can't even dig into the (batter's) box.'
"At that point I got a little concerned -- actually scared. The guy thought he was going to die. He was scared to death."
Porterfield stayed on the phone with Baldelli for three hours, right up until game time. Assistant trainer Nick Paparesta drove Baldelli back to St. Petersburg. The next morning, Baldelli was in the office with Porterfield and an endocrinologist.
There would be dozens of conversations with specialists and visits to some of the leading clinics in the nation. There would be multiple invasive biopsies. There would be frustration, pain and despair.
After months of testing, Baldelli was eventually diagnosed with a mitochondrial disorder, which slows muscle recovery and causes fatigue. Mitochondria, present in all cells except red blood cells, create the energy needed to sustain life. In extreme cases, body parts, including the brain, heart, liver, and kidneys or the endocrine or respiratory systems fail.
And even with treatment, rest and a host of vitamin supplements, Baldelli had doubts about ever playing again.
"My first goal was to get on the field and try to take BP," said Baldelli.
"I'm thinking that my career was probably over. I'm a pretty realistic person. If I couldn't hit in batting practice, how am I going to play major league baseball?"
Baldelli's condition, rare for an athlete, might have generated more attention had his promising career not been placed in doubt already.
"When I first got here, I thought for sure I was looking at a superstar, not just a good player," said Rays senior advisor Don Zimmer. "Then unfortunate things started happening. This is a very sad story with this kid."
Baldelli made his major league debut at 21, hit .289 and .280 in his first two seasons and showed both power (27 homers) and speed (44 steals) for Tampa Bay teams that went a combined 133-190.
Then came the injuries.
He missed all of 2005 and part of 2006 due to a torn knee ligament, then Tommy John surgery. After hitting .302 with 16 homers in the second half of 2006, it was a hamstring injury that initially sent him to rehab in 2007. Then the fatigue set in.
"Within a year I went from being a professional athlete to someone who didn't want to do anything athletic," Baldelli said. "I wanted to sit in the chair all day. It was painful."
Like the Rays, most fans were supportive, although some were less than sympathetic. One blogger called him "worthless." Some suggested the Rays cut their losses by releasing him.
Few, including Baldelli himself, fully understood what he was dealing with.
"Everyone thinks I've got chronic fatigue syndrome," he said. "I've probably heard that 1,000 times. But they have no idea what I'm dealing with. It's literally muscle fatigue where I cramp up. My muscles stop working."
Baldelli stuck with his recovery program, which consisted largely of rest. His teammates, on their way to the franchise's first winning season and playoff berth, provided positive therapy.
"I would go to all the home games," he said. "We had never won here, and it spurred me to try to get my act together and do everything to get back as fast as possible."
Porterfield's goal: Get Baldelli ready for a September call-up.
"We beat that by about a month," Porterfield said.
Limitations remain
His Aug. 10 return was in the nick of time for the Rays, who had just lost third baseman Evan Longoria and outfielder Carl Crawford to the disabled list.
Baldelli hit an RBI single in his second at-bat, and hit .351 with two homers in his first 37 at-bats.
Baldelli aimed to pace himself since, hit .263 overall and played in three Division Series games.
In Game 2, not only did he single home an eighth-inning insurance run, he scored from first on Dioner Navarro's bloop single off the Tropicana Field turf.
"His bat speed looks the same to me," says manager Joe Maddon. "His approach at the plate is very good. When he's able to play on defense, it looks very familiar also. It's just that he can't play as often or with the same kind of sustained intensity."
Baldelli and Porterfield understand his limitations.
"Pre-August 2007, I used to crack the whip on him," Porterfield said. "I'd say, 'C'mon, man, we can get through this' just like I would any other athlete. Was I helping him? Probably not."
Baldelli says he feels as strong as ever, just not for extended periods. It's his legs that bother first.
"Sometimes I get on the field and try to do things I used to do pretty easily. Now I shouldn't be even trying them anymore," he said. "Before this year I ran virtually every ground ball out, reasonably as hard as I could go. Now the coaches and and Joe tell me to do what you have to do to stay out there."
Baldelli's teammates are pulling for him.
"He inspires me," said Carlos Pena. "This kid comes to the ballpark every day with a smile, even going through serious health issues. To not only put the uniform on, but do what he has done -- contributing in a great way for us -- to me that's a testament to his character and an example for all of us."
In turn, he is grateful his teammates provided the platform for his most memorable season yet.
"This is the most fun I've ever had," he says. "Going into this year, I never thought I'd have a chance of playing this year, never mind a chance to play in the playoffs."
Rocco is now playing in the playoffs, and it sounds like Rocco is being told by his doctors he has a mitochondrial disease.
-joey
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Tincup
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posted
Clarissa,
If you don't hear back.. please let me know. I may be able to get through. Or let's say it this way... I WILL get through.
And yes, hokie is right. Good thought. Under Our Skin... baseball player (Colorado Rockies I believe?) .
And.. not in the movie but in the press...
There was a foot ball player in Florida (Gainesville or Tallahassee area I believe). He was arrested for some bizarre behavior- then they found out he had Lyme. Was treated in PA.. and doing better now.
lymie_in_md
Frequent Contributor (1K+ posts)
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posted
Well sports fans, Tinny steps up to the batters box, the bases are loaded two out down by 3 in the 9th. She kicks the dirt from her spikes and looks in for the pitch. Its a strike on the inside corner. With a look towards center field she aims her bat, the pitch comes in and she get all of it, and it zooming toward center field.
Well I guess we'll find out the result soon enough.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Clarissa
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posted
Here's a pretty decent link that someone could send to the Tampa Rays link I gave above:
Clarissa
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posted
Something else to copy and paste addressed to Rocco Baldelli:
Under Our Skin
The intense film, ``Under Our Skin,'' took over two years to make and involved 350 hours of footage.
The documentary is a dramatic account of the growing Lyme epidemic.
It also gives a picture of the science involved and our health care system.
There are several film subjects who share their stories, including Mandy Hughes who had to quit her job as a Sea World animal trainer after she went under-treated for Lyme disease, going from doctor to doctor for seven years. She was labeled with chronic fatigue syndrome, multiple sclerosis and dystonia.
Forest ranger Jordan Fisher Smith recounts his story and his doctor's advice to ``not worry about it'' because it's rare in California to get Lyme disease. He displays the hundreds of prescribed drugs and thousands of dollars spent trying to diagnose his illness.
Elise Brady-Moe prays her new born child is born without the disease she carries (after several miscarriages). Her case highlights the mixed messages sent to pregnant women on the risks of passing Lyme disease to their unborn children.
Up-and-coming Colorado Rockies baseball player Ben Petrick resigns from the sport because he's diagnosed with Parkinson's disease. He later learns he has Lyme disease and despite his skepticism, finds that treatment gives him a reprieve from the slow death sentence he thought he was enduring.
There are several other stories of those suffering from the disease.
There are also several experts in the field who argue that Lyme can be cured with a two- to four-week dose of antibiotics and those who will tell you they've treated over 7,000 patients with a chronic form of Lyme disease using long-term antibiotics.
Dr. Joseph Jemsek, a member of the Infectious Diseases Society of America (IDSA), is a vocal critic of the ISDA Lyme guidelines. He has treated an average of 80 new Lyme disease patients per month from 46 states. He was charged by the North Carolina Medical Board with improperly diagnosing several patients with Lyme disease and offering controversial antibiotic treatments.
Richter will talk briefly before the presentation and answer any questions the audience may have. For more information, contact Richter at 320-983-5400.
The 104-minute documentary film is compelling and will get under your skin.
quote:Originally posted by lymie_in_md: Well sports fans, Tinny steps up to the batters box, the bases are loaded two out down by 3 in the 9th. She kicks the dirt from her spikes and looks in for the pitch. Its a strike on the inside corner. With a look towards center field she aims her bat, the pitch comes in and she get all of it, and it zooming toward center field.
Well I guess we'll find out the result soon enough. [/QB]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymednva
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Member # 9098
posted
Clarissa, your PM box is full!
You might want to check the way you typed IDSA in your last post before this one. It's near the end, in paragraph about Dr. J. It says ISDA, rather than IDSA.
It's so easy to do. I know, I've done it myself!
Thanks for all the work you are putting into this!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Clarissa
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posted
Mailbox cleaned out...thanks!
Where did I write ISDA?
Remember, one dumb blonde moment a day!
Actually, I cannot even accept responsibility for that because I did a cut & paste so some other stupid blonde did that but I'll fix it anyway! LOL
Boomerang
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posted
Way to go, Clarissa!! Good for you.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Clarissa
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OK, So now I've written to him personally on Myspace (thanks for that info) and Facebook.
I've sent 2 emails to the Senior Editors at St Pete's Newspaper and 2 emails (one from my Dad who used to be the physician for the Red Sox) to the Tampa Bay DevilRays website link.
Now I'm passing the baton or this guy will really think I'm stalking him.
I have not mentioned Petrick from Under Our Skin so that would be a good place to start!
I'm on a mission...you and me Tincup, we'll help this poor young man if it's the last thing we do!
lymie_in_md
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posted
Good work Clarissa, I guess its between you and tinny who'll hit out of the park.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Tincup
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posted
Good morning...
I tried to post last night but it seems LymeNet had the hic-cups or something. At least it didn't post my reply 4-5 times!
By the way.. funny LymieinMerryland... funny one you are! HA!
It looks like C is up to bat and looking for a grand slam!
Good for her and those pitching in.
Actually I lived there for a good while and if C can't get the paper people to pay attention... I know some folks in the area who may be able to rattle some cages to find the guy some help.
AND we have a Lyme support person there who might be able to help get through too... and a LLMD not far from there.
There also is an active CFS/Fibro support group that is Lyme literate. They might be available to get the word to the team to help this fellow.
After reading the latest article... it occurred to me he might have Babesiosis? And/or the Lyme returned.
I am hoping much for success here. We've already lost a firefighter in the same area who suffered a long time with Lyme. I don't want to ever see anything like that happen again!
C- and everyone-
THANKS again for trying to help him. This is a team effort.. so hit a home run!!!
Clarissa
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posted
Alright, TC, we're going to get this poor guy an accurate diagnosis...especially since it looks like he's headed to the World Series (my poor Red Sox).
I say hit from all angles...use ALL connections. I have one more I can pull out of my pocket but I'm going to give the newspaper editors, DevilRays and the other websites 24- hours to respond.
I say you move forward with all connections. My heart is bleeding for this kid!!
Tincup
Honored Contributor (10K+ posts)
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posted
Hey C.. just saw your post.
Rather than flood them with stuff... maybe try to hang in and wait?
Don't want them thinking we are a bunch of kooks on a mission. They are pretty hard core... but between your efforts and mine.. and I had a couple of long talks with some good contacts...
I think we got through on a professional sounding effort?
What do you think?
??
OH...
And what made you think I wouldn't know who that Justin Timberwolf was?
I didn't... but how did you know that?
HA!
PS.. The link to write them didn't work for me so I got a regular email this morning from their office.
Tincup
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posted
BINGO BINGO BINGO!!!!
Your wait is over, bless your heart!
But I can't stay. Just started computer up to say I just got a call from someone in the locker room... they play tomorrow night by the way...
He (manager of some sort) was VERY pleased to hear the information.. wants me to send "all" we've got. So I got an email address from the man... and will do that tonight.. with docs names for a direct medical contact. HIPPA and all...
I was VERY impressed with their caring... they love the guy and WILL do all they can to help him. I feel good about that. It was touching to hear him talk.
He asked questions and was VERY pleased to get ANY help for the player... and like you guys.. he isn't going to give up on him!
So thanks to you all... another one educated and getting help!
C- a special thanks to you.
Now gotta run.
Dipstick here left the attic door open when I was putting stuff up there last night.... and my little office is literally filled with wasps!!!
The sun warmed everything up and out they came from their attic hiding place... while I was outside painting.
Clarissa
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posted
Thanks, D!
I also want to point out that the article lymie_in_md (Bob) provided about Bardelli having had Lyme in high school was pivotal...it gave us a point of reference!
Great work, Bob!
Yeah, all of this feels really good. I just might even route for the DevilRays tomorrow night just for Rocco!
posted
wow is all i can say....great job...if this ends up being the solution you will have helped someone and helped the cause.....this stuff makes it easier to deal with herxing.....serious....it gives me strength...nice going!!!
dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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I read somewhere that he'd been tested for MS, ALS, etc. etc. (I also thought ALS) but I just couldn't believe he hadn't been checked thoroughly for Lyme.
Great move by Clarissa and others here to get some action on this!
Way to be active.... I do think it is lyme related at the very least with Rocco.
He is very similar to me in some ways. Age, he is a baseball player, and in addition to that he said that he had improved by taking supplements and by sleeping all the time. He should see my doc, she believes one of the key to lyme is supplements to get your soldiers ready to fight the battle and it has helped me improve.
I also heard recently he's trying to get a ton of sleep and drinks 10 large bottles of water a day. You really have to hope that docs have already checked him out thoroughly for lyme or began some type of lyme treatment on him, but I doubt he is on ABx.
Maybe someday he'll be 100% cured, and maybe it will be in part due to lymenet... just like me.
Tincup
Honored Contributor (10K+ posts)
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posted
As C said..
Yes! I agree. If everyone hadn't added their 2 cents... we'd be a day late and a dollar short on the effort.
Thanks Lymie and all for posting all the articles and calling attention to this situation.
Hey C- I am running a bit bee-hind and could use the links you've got if you are still up?
If not.. and you see this in the morning... not to worry.
I'll gather some and send them off tonight. Have a few things already.. but am worn down from chasing wasps and other fun stuff... so it would be a help.
Again... good to see the caring and help here. It always makes me
Clarissa
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posted
All over it:
Please watch this eye-opening video regarding Lyme Disease promoting a documentary called 'Under Our Skin' that is being screened and viewed country-wide since May of 2008.
LLMD list will have to be confidential but I have the full list from BettyG but you don't have a PM box.
No question in my mind that he should goto Dr. R in NYC. Baldelli will be up in Boston for the playoffs, anyway. Dr. H in NY isn't taking new patients and Dr. R ROCKS!
Tincup
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posted
Bless your heart. Just finished the basic letter... and here is one of the paragraphs from that letter...
"A number of Lyme patients read articles recently about his troubles and immediately the warning bells went off. They are anxious for him to have good information in hopes he will avoid a long drawn out illness like many of them have had to endure.
They are all sending their best wishes to him for a complete recovery. To note- at least one of the patients (Clarissa) is a die hard Boston fan and even she is cheering you all on!"
The links are great. THANK YOU! I am running out of steam... so I do appreciate them! Will send some now.
Also referred him to a LLMD directly and was in touch with the LLMD's office to advise them of the situation. Most LLMD's are away at the conferences.. or are headed that way.
posted
I am from RI and my sister in law knows Rocco and his family. When he was originally side lined I contacted her and suggested she talk to his family about Lyme or have them contact me. I never heard another thing. I do recall, however, that he did have Lyme a few years ago. Yes, it sounds like it has returned.
I googled the disease he has been diagnosed with and it sound more like something one would get as a child. It also sounded ( I am not a doctor) like he would have it for life and that it could not be cured.
I think it is great that you are all trying to help.
Posts: 63 | From RI | Registered: Sep 2007
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Clarissa
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That's interesting, Anne. Good for you for making the initial approach!
I pray they take our advice and knowledge seriously because there's not a question in my mind that this is tick-borne-related, especially based on his history.
posted
I wonder what kind of tests they ran to determine that he had a mitochondrial problem?
We all know that Lyme interferes with the production of ATP, but if there are tests to actually determine that the mitcondria are not working properly, why wouldn't we be tested for the same thing? It would help diagnose Lyme disease in some of us who never test positive or only indeterminate on the WB.
Although personally, I've recovered enough now that my mitochondria might not look too abnormal.
There is also a former football player, Eric Scoggins, that has been diagnosed w/ALS, and I sent info to the reporter who did an article on him for the LA Times to suggest he be checked for Lyme disease. He's accepted the diagnosis of ALS and from the sound of it is just waiting to die.
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Clarissa
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Member # 4715
posted
psano2: That football player story is soooooo sad. I don't understand why people accept diagnosis' like that when they could just TRY abx!
I FINALLY got through (2-years later) to my friend's husband diagnosed w/Parkinsons in his 40's.
Under Our Skin convinced him and he's going to see an LLMD. Hooray! I'll just never get it when people accept a death sentence...it's truly tragic.
good for you for getting your friend's husband to make an appt w/an LLMD.
I sent the story on Rocco to the reporter who did the story on Eric Scoggins and hopefully he'll forward it on to him. I've emailed the reporter twice before, but he's never responded to my emails.
I hope it gets to him.
Patti
Posts: 975 | From California | Registered: Apr 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Keep pecking away, P! It took my Mom 3 1/2 years to get a friend to an LLMD; diagnosis was neurological Lyme with Bartonella and Babesia trimmings.
He calls her every day to thank her for her relentlessness!
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Okay, so I can't deny my sadness over the Sox's loss last night but there was a silver lining.
Rocco Bardelli got a hit and earned an RBI to put the Rays ahead. I felt truly happy for this man who has struggled so much.
Tincup: PLEASE, PLEASE keep us posted on his pursuing the Lyme path. I was cringing when they announcers were discussing his "mitchondrial disease" that makes him really fatigued.
He has those hollow Lyme/Babesia eyes. So tired. I just want to know that he doesn't get persuaded in another direction.
My brain needs some sort of closure for this sweet kid...so all updates appreciated!
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Felt the same way Clarissa, being a sox fan in all. Hopefully, they take the time to do the research. Reading "Cure Unknown" by someone close to Rocco or Rocco himself might give him a good picture of the politics in the lyme world and why it is sooo denied as a diagnosis.
Hoping with everyone for the best,
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm playing devils advocate here, but how do you all know this person does not have a mitochondrial disease. The symptoms fit the disease.
Yes, he had Lyme and it could be a flare-up. It could also be a new issue. I think it's great people are trying to help him and suggest ideas, but everyone seems sure Lyme is the culprit this time. How with such sureness?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
We're not absolutely sure! But we are sure most Doctors aren't looking for it, and one of the great problems with lyme is ATP dysfunction - A FACT. That is why all lymies have long recovery times.
So if you were a betting person, what do you think the chances of it being a lyme relapse. I think it is better then 9 to 1. The only way to know for sure is to have an IGENEX test done and an LLMD to interpret.
Personally, I'd prefer to use a nosode and energetically test for it by a practioner who is qualified to do so. But that's just me.
And thankfully, Clarissa and Tinny are working hard just to let him know it might be lyme. Bless both their wonderful hearts.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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quote:Originally posted by lymie_in_md: What a smash tinnie it cleared the fences.
Clarissa and Tinnie your both amazing, two gold stars to both of you and to all that posted.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Good point. I had no idea about the ATP production issues. Very interesting! Thanks for the infornation.
quote:Originally posted by lymie_in_md: We're not absolutely sure! But we are sure most Doctors aren't looking for it, and one of the great problems with lyme is ATP dysfunction - A FACT. That is why all lymies have long recovery times.
So if you were a betting person, what do you think the chances of it being a lyme relapse. I think it is better then 9 to 1. The only way to know for sure is to have an IGENEX test done and an LLMD to interpret.
Personally, I'd prefer to use a nosode and energetically test for it by a practioner who is qualified to do so. But that's just me.
And thankfully, Clarissa and Tinny are working hard just to let him know it might be lyme. Bless both their wonderful hearts.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Just wanted to let you guys know that I'm not gonna tolerate any positive thoughts or whatever going towards Baldelli for the next week or 2. It's tough enough already for a philly team to win a championship; the last thing the phils need is a bunch of lymies working against them.
I actually read about Baldelli's issues prior to this season and it crossed my mind that it could be lyme related but it could of course be a host of other things as well. Didn't know at that time that he had lyme previously, which naturally makes it substantially more likely that lyme is playing a role.
I'd guess that he's had lyme mentioned to him as a possibility over the last couple years, but I wouldn't be surprised if he basically dismissed it or briefly looked into it, maybe had an ELISA, and moved on as I did (of course lyme was intermingled with hundreds of other suggestions including the ever popular "it's all in your head").
Hopefully, he gets to the root cause(s) and is able to address these issues and have his symptoms resolve. Just not in the next 10 days, though I suppose I can't complain if he has a few bit hits but the rays still lose the series.
Posts: 43 | From NJ | Registered: May 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I heard the announcer's last night, during the last game of the World Series talking about this young man and this "muscle" illness.
I hope now that the b-ball season is over, he will be able to get to the real reason his health and his career is at risk.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Boo hoo... sorry Rays.
Congrats, Boston.
Map said ...
"I hope now that the b-ball season is over, he will be able to get to the real reason his health and his career is at risk."
Yes. I think this avenue will be pursued. The person I spoke with was VERY interested in actively going after any and all possibilities. Very caring.
He was very anxious to get the information... which WAS coming at a VERY busy time... and asked GOOD questions about Lyme at the time.
The reason I feel it will be taken seriously... other than my"feel" for it while hearing him speak is the actual comments made by the player in the news.
I can see he doesn't believe what the "experts" are telling him. He is frustrated like so many of us were when we were being told a bunch of hooey. You can "hear it" in his words in the quotes.
If it is Lyme, I hope he gets answers. If it isn't... I still wish the same for him.
You all are a great bunch of people. You know that don't you?
Each one, reach one.
Thanks for caring about those who are both large and small.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Tinny, it's not congrats to Boston, dear. It was Phillies that won. lol You are allowed one mistake a year. That's it for you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Tinny, if it comes up, given the fact money isn't option and time is prescious for his career. He might try the Doctor in Germany.
My reasons, we've already seen some success already and the treatment time is short for getting results. If he goes on long term ABX it might take years to resolve. His window for staying in baseball is short one. The treatment time is 3 weeks. And if it doesn't work, the money wasn't the issue anyways and the ABX will always be there.
I feel he is looking at this thanks to Clarissa and your help.
If I've angered anyone with my suggestion SOB, I'm just posting a thought nothing more.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If I had a pro baseball player's money, I'd be on the first plane to Germany and buy my way to the front of the treatment line. Who wouldnt'? It's a no brainer when you make millions.
Maybe the treatment will cure him and he'll be thankful and send ten Lymenet members to Germany for free. Wouldn't that be nice?
Has this person had a muscle biopsy done? Just curious.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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