I am still shaking in my boots. Just finished watching Dr. Cheney's video over the internet..on CFS Diastolic Cardiomyopathy.
Sorry don't have energy to copy/paste but just google: CFS Diastolic Cardiomyopathy Dr. Cheney and the video starts immediately after you click on the site.
This may have been discussed here before so this might be repetitive.
I am stunned..but I warn everyone, it took a lot of brain power the last several days and stopping/starting to follow what he was saying.
And yes, it definitely can pertain to Lyme since so many of us have both!! Please watch and post your opinions!
Posted by Keebler (Member # 12673) on :
- I have the links and some excerpts in my file.
Remember, though, that treatment for infections can bring improvement. That part is not really in the video. Remember, with treatment - and time - things can get better.
The information about Diastolic Cardiomyopathy and Cardiac Insufficiency is meant so that patients do not overdo the stress on their hearts and have patience. This is serious but, with attention, it can improve.
I'll be back with links. -
[ 05-23-2010, 01:08 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- The links below were presented to the CFS/CFIDS community. While some (many?) cases of CFS might be undiagnosed lyme, this information may be helpful to patients across the board.
Even if from lyme, it helps us understand how better to take care of ourselves while seeking treatment/resolution. ==================
You can watch the video - for free if you have fast speed internet.
More recently, physicist, physician, long-time ME/CFS researcher and clinician, and heart-transplant recipient Paul Cheney, M.D., Ph.D., has offered an alternative theory that a subset of ME/CFS patients suffer from a
diastolic cardiomyopathy, a problem with ventricular filling resulting from mitochondrial dysfunction and low ATP energy in the heart.
VIDEO: A three-hour talk by Dr. Cheney on diastolic cardiomyopathy and ME/CFS.
"CFS and Diastolic Cardiomyopathy" - Paul Cheney, M.D., Ph.D.
There are links to TWENTY articles on this topic at this link. Among those:
Hawthorn extract for treating chronic heart failure: meta-analysis of randomized trials.
Am J Med. 2003 Jun 1;114(8):665-74. [PDF Format]
=======
There is new research from a New Jersey team, authored by Doctors Arnold Peckerman, Benjamin Natelson et al., which found left-ventricular dysfunction following exertion and orthostatic stress in patients with myalgic encephalomyelitis/chronic fatigue syndrome. . . .
. . . In an NIH-funded study on impedance cardiography also linked . . . , Peckerman and Natelson found that low cardiac output correlated with symptom severity in ME/CFS. . . .
EXERCISE INTOLERANCE ------------------
Dr. A. Martin Lerner: " . . . Viral infection persists in the heart, causing left-ventricular dysfunction, producing exercise intolerance.
. . . "Exercise, in turn, worsens the cardiac dysfunction. "
- Lerner has seven articles at this link.
=====================================
Again, presented not to sadden, but if there is a dysfunction, treatment for underlying infections and employing support measures can make a difference.
the link to the Hawthorn research above holds hope. I feel so much better when I take that. -
[ 04-15-2010, 06:07 PM: Message edited by: Keebler ]
Posted by btmb03 (Member # 18394) on :
thanks Keebler!
Posted by Keebler (Member # 12673) on :
- You can read customer reviews and look inside the book at this link to its page at Amazon.
This book focuses on lyme patients and also those with Cpn (Chlamydia Pneumonia) - and the effects of high cortisol from stress. Suggestions included in the book are very helpful:
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3] (See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle, page 37.)
EXCERPT:
when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E. (end quote)
==============
This may be just one reason why non-aerobic, gentle, exercise is suggested for lyme patients. It's good to move as best we can, but aerobic exercise, with any infection, may put the heart at risk.
And since some chronic stealth infection can even go beyond lyme and the tick-borne infections:
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
And may I add to the list of things to test for: enteroviruses. Using Arup lab. The enterovirus website is not quite operational yet, but it will have loads of info on it soon.
A friend of mine is now 95% well after being sick for several years (very sick). She has been on antibiotics for lyme/coxiella, valcyte for high EBV and HHV-6.
She saw improvements from both treatments. She is now almost well by treating the enterovirus with oxymatrine. She had multiple pathogens making her ill.
Topic: Parvovirus B19 should be included in Lyme differential Dx!!!!
AliG - posted 12 October, 2008 -
[ 10-04-2010, 01:06 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- I feel bad posting all this stuff. I've had these links for years and don't have the energy to work through it all - or find it too much of a downer.
Still, knowledge is power. But we need also more than knowledge.
Remember the power of healing arts such as singing or learning a musical instrument . . . yoga . . . Qi Gong or Tai Chi, too.
Be sure to intersperse with your study, some joy - even if just in appreciation of nature/art /music and of those good people around you.
That will help to nurture any heart. -
[ 05-23-2010, 01:09 PM: Message edited by: Keebler ]
Posted by btmb03 (Member # 18394) on :
I agree, dr. Cheney even talks about the importance of meditation, deep breathing, even touches on spirituality.
Appreciating the world around us takes on a whole new meaning with these illnesses!
Posted by Fordace (Member # 14874) on :
watched 2 hours so far.....awesome information, but also, depressing too......
Posted by btmb03 (Member # 18394) on :
it is a bit hard to take since Dr. Cheney is so clinical..i missed the part of the MD in Germany who is doing stem cell treatment..
as he said, we have a systemic disease so it will take many different modalities..
Cheers!
Posted by disturbedme (Member # 12346) on :
I don't really have the patience to sit and listen to all of that. So long....
It's probably something I should listen to but would make me depressed since I have heart issues thanks to this illness. And the heart issues scare me a lot!
Treatment for two years and still no change in symptoms of heart getting better... and the worst part is I'm only 25... I shouldn't have to worry about heart issues. Posted by btmb03 (Member # 18394) on :
I know what you mean disturbedme...but this actually shed light on many issues--initially scary but after thinking about it I realized the docs have missed so much, wonder if this another piece of the puzzle (that always makes me feel better).
Crappy having this illness and heart issues, sorry that you're also going thru this.
Posted by disturbedme (Member # 12346) on :
Well, this illness is what gave me the heart issues...
I will have to watch more of the video then. In spurts.
Posted by Lymetoo (Member # 743) on :
Can someone summarize what he says? I'm too impatient to sit and watch something lengthy. I have heart issues too .. but my attention span is short! Posted by btmb03 (Member # 18394) on :
I truly wish I had the brain-power and stamina to make a synopsis of what dr. Cheney talked about.
It's also very complex - perhaps watch it the way I did - a little bit at time and focus on the parts that are interesting/important to you (ie: gut vs brain vs. cadiac output).
I also think I'm coming down with a whopping cold/flu or something..time for the hot tea and tylenol. Posted by Lymetoo (Member # 743) on :
Thanks, btm. No worries! Hope you feel better soon!! Posted by LymeCFIDSMCS (Member # 13573) on :
Cheney's work is essential in understanding the heart and CFIDS, but it's important to look at those who came before him too.
Dr. Martin Lerner was studying viral infections in the hearts of CFIDS patients for many years before that, and his work formed the basis for the Valcyte trials going on now.
Lerner treated HIMSELF with antivirals for six years for a heart infection (viral) and he's a cardiologist: I think about that (I saw that on a YouTube video of him lecturing) every time I lose patience. Six years.
So recovery may be possible and just may take a long, long time.
Also, John Richardson in the UK studied CFIDS/ME and enteroviruses for many many years -- I have yet to read his book but plan to read it soon. And Arnold Peckerman did the research Cheney cites.
This is important partly because Lerner and Richardson were talking about viruses, and studying viruses. I get frustrated when people do the Lyme=CFS equation because it's far more complicated than that.
Lerner did myocardial biopsies so the discovery of viruses in the hearts of his patients was confirmed through tissue samples.
But Lerner also found, and spoke about not long ago, that one subset of his CFIDS patients have only a virus, and another subset have a virus plus a coinfection including Lyme and/or babesia.
So this again points to the importance of treating viruses.
I have used the magnesium cream and Nexavir that Cheney talks about in that video (he talks about both improving heart function) and I think both are useful. Not cures though.
[ 03-17-2009, 04:52 PM: Message edited by: LymeCFIDSMCS ]
Posted by Faith6 (Member # 14072) on :
Kebbler-
Thanks for the Mr. Bean link. It got my endorphins up. So funny!!!
Posted by Keebler (Member # 12673) on :
I hate posted so much serious stuff. I would have loved to have become a comedienne, really. But, like much art, I can appreciate it much more readily than actually creating it myself.
So, with all this serious stuff, I try to interject some play when I can. -
[ 05-23-2010, 01:20 PM: Message edited by: Keebler ]
Posted by LymeCFIDSMCS (Member # 13573) on :
Dr. Cheney is going to be announcing the results of his stem cell/heart trials (using pig and human cells) in mid to late April.
Posted by astriapage (Member # 17120) on :
I have had open heart surgery due to Lyme-now that is scary.
I still continue to have bad cardiac issues, and I am only 30 years old!
Posted by btmb03 (Member # 18394) on :
A friend who has CFS told me that Dr. Cheney initiated stem cell tx with two patients. How is that possible? I thought stem cell research was only allowed under very specific circumstances?
Despite the hoopla around stem cell tx I do think it's the way to go. My opinion only.
Posted by LymeCFIDSMCS (Member # 13573) on :
Astria - open heart surgery!! Could you explain what it was for? Apparently Lyme infected your heart but how and what did they do?
Posted by nellypointis (Member # 1719) on :
Cheney ended up having a heart transplant himself, so obviously he's going to be looking at cases like his.
Lerner, on the other hand, was always convinced that a virus was the cause of his heart probs and he treated accordingly (for a long, long time) and he seemed to get better.
I had absolutely terrible, incapacitating heart problems, terrible arrhthmias, non stop, all day and all night long (could'nt sleep for my heart stopping as soon as I fell asleep) and now all those bad symptoms are gone!
My pulse is completely normal and regular, never have the slightest ectopic beat, no more heart stopping in the night provided I keep taking me Lariam every week.
If I miss a dose, or if I go over a few days after it's due, I get a warning from my heart, a flutter or two, then I say: when was the last time I took my lariam? and invariably I'm a few days overdue for my next dose.
So in my case heart things are kept in check with Lariam (is babesia what makes my heart bug? )
Nelly-Paris-France
Posted by LymeCFIDSMCS (Member # 13573) on :
Lerner treated himself for cardiomyopathy too -- that was how he got interested in it. He divulged this in a lecture I watched on YouTube you might be able to find -- really interesting. I don't think he talked about it in the past b/c I never knew that and I've really followed his research. So I guess it takes fixing one's own heart to understand the heart. . . or something.
Posted by Keebler (Member # 12673) on :
- ABC News does a good job here of explaining various cardiac conditions involving a irregular heart beats. Also, see the links below for QT syndrome. I'll be right back with those.
Roger Moore, Elton John Have Type of Arrhythmia Suspected in Death of Breslin's Daughter
By SUSAN DONALDSON JAMES - April 25, 2009--
When does that heartbeat that skips after too many cups of coffee or lurches erratically at night lead to a fatal arrhythmia?
"That's a popular question," said Dr. David Haines, director of the Heart Rhythm Center at Beaumont Hospitals in Royal Oak, Mich. "Almost everybody has a palpitation or skipped heartbeat and the overwhelming majority are benign."
But more than 250,000 people die each year in the United States from sudden cardiac deaths, and most of those are thought to be from ventricular fibrillation.
Just this week, the 44-year-old daughter of famed New York City newspaper columnist Jimmy Breslin died unexpectedly from what doctors think may have been a sudden death arrhythmia.
Kelly Breslin died four days after collapsing at a Park Avenue bistro where she had enjoyed a steak and fries at a friend's birthday celebration. After eating, she put her hand on the leg of the person seated next to her and collapsed. . . .
- Full article at link above.
===================
Now, not to discount medical exams but to shift from fear to empowerment, it is also important remember the positive effects that magnesium and calcium to help regulate cardiac rhythm. A deficiency in either can trigger irregular heart beats.
And, going back to the work of authors listed way above, there are some things that we can do to help ourselves. And, sometimes, a good quality very dark chocolate may just be the ticket - in addition to expert medical care (although most lyme patients are pretty much on their own to figure out a lot). -
[ 10-04-2010, 01:05 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Automated Prism system to test for dangerous parasite
NEW YORK, May 19 (Reuters) - Abbott Laboratories Inc (ABT.N) has received U.S. approval to market its diagnostic test for a parasite spread by a bug that causes Chagas disease, a potentially fatal condition found only in the Americas.
Abbott said its automated Prism diagnostic system, which also tests for hepatitis, HIV and other retroviruses, will now test for the parasite. Chagas disease, caused by the parasite Trypanosoma cruzi, is found mainly in rural areas of Latin America where poverty is widespread, according to the U.S. Centers for Disease Control and Prevention.
The CDC estimates as many as 11 million people in Mexico, Central America and South America have the disease, and most of them don't know they are infected. Infection is lifelong and can be life threatening, leading to heart disease and heart failure.
In areas where the disease is endemic, the parasite is usually carried by triatomine bugs. They hide in crevices in the walls and roofs of houses and bite people's faces at night -- and are therefore nicknamed "kissing bugs."
The parasite can also be spread by blood transfusions, organ transplantation, consumption of uncooked food contaminated by the bug, and from congenital transmission from mother to baby. But it is not spread person to person like a cold or the flu, or through casual contact.
Anti-parasite medications can successfully treat the disease in its early acute phases, and can prevent or delay symptoms during the chronic phase of the disease.
(Reporting by Ransdell Pierson; editing by John Wallace) -
[ 05-23-2010, 01:18 PM: Message edited by: Keebler ]
Posted by astriapage (Member # 17120) on :
This is to address the person that asked how Lyme affected my heart-
At the time all they knew was I had a bad mitral valve infection, and it was preventing the valve from shutting all the way.
They put me on 6 weeks of abx to get rid of infec but I had to have surgery to replace valve anyway.
I tested positive for Lyme upon piecing together my puzzle from inputing the symptoms into goggle-main one being the mitral valve damage and it always came back Lyme.
I begged for the test and got it, so docs chalk it up to Lyme.
I still have a heart rate of 120 though.
Hope this helps!
Posted by astriapage (Member # 17120) on :
This is to address the person that asked how Lyme affected my heart-
At the time all they knew was I had a bad mitral valve infection, and it was preventing the valve from shutting all the way.
They put me on 6 weeks of abx to get rid of infec but I had to have surgery to replace valve anyway.
I tested positive for Lyme upon piecing together my puzzle from inputing the symptoms into goggle-main one being the mitral valve damage and it always came back Lyme.
I begged for the test and got it, so docs chalk it up to Lyme.
I still have a heart rate of 120 though.
Hope this helps!
Posted by Kreynolds (Member # 15117) on :
I have been looking for this video......
Astriapage, hope all is well.
I appreciate what you did for me and I thank you from the bottom of my heart( whats left of it).
I won't stop fighting until I get my heart situation figured out!
Posted by Keebler (Member # 12673) on :
- MYCO just posted this at another thread:
Yes, I am reading THE SINATRA SOLUTION - Metabolic Cardiology and it is fascinating. Dr. Sinatra in CT has helped many with heart disease and CFS on this combo (must be all three).
Reversed heart failure, high BP and prevented bypass in alot of patients. Amazing read!
(Dr. S) recommends this daily dosage for CFS (Lyme):
15 hospitals to freeze children suffering from cardiac arrest
Later this year, 15 medical centers will begin testing what is called Therapeutic Hypothermia on children suffering from cardiac arrest.
NBC -- Later this year, 15 medical centers will begin testing what is called Therapeutic Hypothermia on children suffering from cardiac arrest.
Physicians routinely use the procedure on adults, but they don't have any data on what it might do for children from infancy to eighteen years of age.
In the procedure doctors place patients on a temporary heart-assist device and packed them in ice to cool down the body. The assist pump allows the heart to heal itself while the induced hypothermia protects the brain.
The University of Utah and University of Michigan will head up a study to see if "cooling" works for children.
"Children have cardiac arrest, either because they are already in the hospital with a very, very severe illness or they have a cardiac arrest outside the hospital because of something sudden and unexpected," explained Dr. Michael Dean of the University of Utah's School of Medicine.
If the heartbeat is restored, but a child remains in a coma, physicians at Primary Children's Hospital and 14 other medical centers will use cooling blankets to drop the body temperature to 32 to 34 degrees Celsius.
The patient will remain at that temperature for three days. Then rewarming over 16 hours will bring them back up to normal, where they will stay for 120 hours.
"If the data looks good, we'll transform the care of children that have had cardiac arrest across the world," says Dr. Dean. Paramedics might even be able to do the procedure in an ambulance while the patient is being transported.
"The animal studies that underlie all of these efforts in the clinical setting are fantastic," Dr. Dean adds.
After one year, with more funding from the National Institutes of Health, the study could expand to include 30 sites around the country.
More than 900 children could be enrolled over the next six years. --
[ 10-04-2010, 01:07 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Nice, gentle but powerful exercise:
QiGong & Tai Chi & Yoga -
[ 11-21-2009, 10:01 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Less than an hour around smoke can affect the heart . . .
quote: ``And it cited "compelling" if circumstantial evidence that even less than an hour's exposure might be enough to push someone already at risk of a heart attack over the edge -- as the smoke's pollution-like small particles and other substances can quickly affect blood vessels. . . .''
Report finds smoking ban cut heart attacks - Confirms benefits of eliminating exposure to secondhand smoke
(AP - The Associated Press).
WASHINGTON - A major report confirms what health officials have long believed: Bans on smoking in restaurants, bars and other gathering spots reduce the risk of heart attacks among nonsmokers.
More than 126 million nonsmoking Americans are regularly exposed to someone else's tobacco smoke. The surgeon general in 2006 cited "overwhelming scientific evidence" that tens of thousands die each year as a result, from heart disease, lung cancer and a list of other illnesses.
. . .
"The evidence is clear," said Dr. Thomas Frieden, head of the federal Centers for Disease Control and Prevention, which requested the study. "Smoke-free laws don't hurt business ... but they prevent heart attacks in nonsmokers."
Among the IOM report's conclusions: While heavier exposure to secondhand smoke is worse, there's no safe level.
And it cited "compelling" if circumstantial evidence that even less than an hour's exposure might be enough to push someone already at risk of a heart attack over the edge -- as the smoke's pollution-like small particles and other substances can quickly affect blood vessels. . . .
- full article at link above. -
Posted by Keebler (Member # 12673) on :
- In the book, The Clinical and Scientific Basis of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome
authors: Byron M. Hyde, M.D., Jay Goldstein, M.D. and Paul Levine, M.D.
The Nightingale Research Foundation reprinted p. vii which shows three sets of SPECT scans. (1993, I think.)
Taken in resting, post-exercise and 24 hours post-exercise, the images show an immediate post-exercise effect with perfusion and
``illustrate the severely decreased brain perfusion of the same patient 24 hours after the brain has been stressed by physical exercise."
This is a most remarkable piece of paper. You can see the marked impact upon the brain in the nine photos from the SPECT.
I can't find a copy of the page on the web, but you could request a copy from the Nightingale Research Foundation at
Believe it or not, toxic free radical molecules and oxidation by-products are produced whenever you exercise.
Everyone knows that exercise is related to improved muscle, heart and lung function... but it does have a downside, too. 1,2
All of your workouts' positive effects begin with oxidative phosphorylation, a pathway that your body uses to generate energy (known as adenosine triphosphate or ATP) at the cellular level.
Unfortunately, this respiratory process--paired with your muscles' contractions and additional environmental factors like certain preservatives in foods and beverages, sun exposure and smog--produces by-products that pollute your body and lead to the formation of damaging free radicals.3
And studies show that this excess free radical exposure can pave the way to DNA mutations, premature aging and cell death, muscle weakness, fatigue and chronic oxidative stress.4-5
So how can you get the best benefits of regular exercise--without placing your body at risk in the process?
Proper antioxidant support is one effective way: Extensive research shows that safe, natural substances including vitamins A, C and E, N-acetyl cysteine, lutein, rosemary leaf extract, turmeric, green tea, bilberry and grape seed extract are all potent free radical quenchers . . . .
- Cont'd at link above.
======================
In addition to antioxidant support, please refer to Burrascano's guidelines regarding self-care and safe non-aerobic exercise recommendations.
Exercise is vital - it just needs to be the right kind in the right degrees.
(10-10 - this site just changed all its links. The articles are still there but they take some effort - I'll work on this when I get some energy. In the meantime, copy and paste the title with Google to find the article.)
* Magnesium: The Underappreciated Mineral of Life Part II
-----------
All this on magnesium is partly because it has helped me so much. However, be sure to ask your doctor. Most lyme patients are very low in magnesium as the infections seem to do that.
Some are concerned that the magnesium can "feed" infection, however, if the body is severely depleted the body must be replenished as magnesium is a necessary mineral for survival.
Taking magnesium with B-6 helps it get into our cells better. And B-6 is a calming vitamin, too. B-12 important for nerve health, too. -
[ 10-04-2010, 01:09 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Cpn Help - C. pneumoniae (as discussed in above article) -
Posted by Keebler (Member # 12673) on :
- nenet just posted this great article at another thread. It applies to cardiac function and exercise tolerance details discussed above, so I thought it would be good here, too. -------------------
Lyme Disease - Its Cause, Symptoms & Treatments: An Interview with Professor Garth Nicholson
October 20, 2010 - ProHealth Library
Professor Garth Nicolson, PhD, director of the Institute for Molecular Medicine in Huntington Beach, CA, was a featured speaker at the International Lyme and Associated Diseases Society Annual Conference in Jersey City, NJ on Oct. 14-17, 2010.
This interview highlights key points in Dr. Nicolson's presentation to the ILADS group:
REVERSING MITOCHONDRIAL DAMAGE & INCREASING CELLULAR ENERGY IN CHRONIC LYME & LYME-ASSOCIATED INFECTIONS
- by Garth Nicolson, PhD. - Interview is at the link above. ------------------------------------
- Carol in PA adds:
That article has a link to an article about repairing mitochondrial function with NT Factor. This helps fatigue.
This book at Amazon - see reader reviews. -
Posted by Keebler (Member # 12673) on :
- Re: feeling worse after exertion. Just stumbled upon this at a discussion board.
It's what I've been saying for years, not more tired after exertion, it goes so far beyond that that it's literally sickening.
I can only explain it as: "post-exertional exacerbation of symptoms" for lack of precise words that can come even close to describing this.
This is something that few doctors really understand. MANY of the links here speak to this but I thought this comment would just help others better understand: ------------
. . . In the International Consensus they use the term Post-Exertional Neuroimmune Exhaustion (PENE pen ׳-e). Exhaustion is just another word for fatigue.
I don't have post-exertional fatigue.
I have post exertion symptom exacerbation. Many of use don't feel more fatigued or exhausted after exertion.
ASTAXANTHIN Links -
Posted by nonna05 (Member # 33557) on :
I know this was a lot but any updates or is there a simple way to get through to a doctor ,not LLMD, about possible issues..
Test when weak and low electrolites...then symptoms slowed..
But different issues over several years ,but nothing that WORRIES THEM...
WHAT wording ,,I certainly can't mention all thing's listed...I'd get the roll of eye's and exit door..
Posted by Keebler (Member # 12673) on :
- LEARNING A STYLE
I suggest to those wanting to learn Pilates (or Qi Gong or Tai Chi) at home to find a local instructor to come to your home for a few private lessons - or a small group of friends &/or family to split the cost.
Some of the positions are very specific and a lot can be missed if just watching a DVD.
sixgoofykids (a moderator here) is a Pilates Instructor. When asked if there was a particular DVD that she might recommend for someone who is home-bound,
sixgoofykids writes: -------------------------
I'm not too familiar with most of the videos since I've always done it in a studio setting. I know of this workout online. It's 11 minutes, but you might want to have a pause button handy for breaks.
I'm happy to check out any DVD someone finds online, but unfortunately, I don't know which ones to recommend.
Classical pilates is generally done with no music. The reason is that you want to focus on your body and the movement without the temptation to work with the beat.
This aspect of pilates was great for me because I lost a lot of my proprioception (knowing where your body is in space, think of a toddler learning to walk). When I was sick, I wasn't too weak to walk, I didn't have enough control to walk. Pilates helped me reconnect my mind to my body.
What's also good for Lyme patients is most of it is done lying down, which takes gravity out of the equation.
There's a broad range of pilates work, so don't feel limited by the beginner video. Here's an example of advanced reformer work by the same man. http://www.youtube.com/watch?v=32thJdJyK8I (you might want to turn your sound off if you're annoyed by a pulsating beat as the video does have music).
-------------------- sixgoofykids.blogspot.com -
Posted by Keebler (Member # 12673) on :
- LOW LEVEL CARDIO
Another matter of interest from sixgoofykids in response to a poster whose LLMD did not want her working out on a treadmill and wishing she could move at a faster speed --
sixgoofykids writes: -----------------------
I just read
The Primal Blueprint by Mark Sisson
(also has a blog at Marksdailyapple.com ).
He is all about low level cardio, which means slow walks.
His theory is that you can get a lot more movement in and do well for your body without draining the adrenals by over-exercising if you go for slow walks or slow bike rides.
Even as a pilates instructor [inserting for clarification, that she has been in a solid remission now for quite some time],
I limit the number of hard workouts I do in a week, usually 2, then one or two moderate workouts (yesterday's was five minutes! usually the moderates are an hour but at an easy level for me).
We don't need to go all out every time we exercise.
For the rest of my movement, I walk . . . we never walk at high speeds or get our heart rates up. We stroll.
I think (but you'd have to ask your LLMD to verify) that when we say we're using a treadmill, the docs assume we're doing a hard walk and getting our heart rate up, which takes energy away from healing. I would bet you'd be okay to do slower walking so that you can still keep with it.
You might like the book or website I mentioned above. His way of eating is Lyme-friendly. (end quote)
LYME BORRELIOSIS AS A CAUSE OF MYOCARDITIS & HEART MUSCLE DISEASE..
[mulitple authors, see link]
University of Vienna, Austria.
Abstract
Lyme borreliosis (LB) is a multisystem disorder that may cause self-limiting or chronic diseases of the skin, the nervous system, the joints, heart and other organs.
The aetiological agent is the recently discovered Borrelia burgdorferi.
In 1980, cardiac manifestations of LB were first described, including acute conduction disorders, atrioventricular block, transient left ventricular dysfunction and even cardiomegaly.
Pathohistological examination showed spirochaetes in cases of acute perimyocarditis.
Recently, we were able to cultivate Borrelia burgdorferi from the myocardium of a patient with long-standing dilated cardiomyopathy.
In this study, we have examined 54 consecutive patients suffering from chronic heart failure for antibodies to Borrelia burgdorferi. On ELISA, 32.7% were clearly seropositive.
The endomyocardial biopsy of another patient also revealed spirochaetes in the myocardium by a modified Steiner's silver stain technique.
These findings give further evidence that LB is associated with chronic heart muscle disease.
PMID: 1915460 -
Posted by Keebler (Member # 12673) on :
Could exercise actually be bad for some healthy people?
A well-known group of researchers, including one who helped write the scientific paper justifying national guidelines that promote exercise for all, say the answer may be a qualified yes.
By analyzing data from six rigorous exercise studies involving 1,687 people,
the group found that about 10 percent actually got worse on at least one of the measures related to heart disease: blood pressure and levels of insulin, HDL cholesterol or triglycerides.
About 7 percent got worse on at least two measures. And the researchers say they do not know why. . . .
. . . They found it was not related to how fit the people were at the start of the study, nor to how much their fitness improved with exercise. . . .
. . . . Dr. Kraus said researchers needed to figure out how to tailor exercise prescriptions to individual needs. . . .
. . . Dr. Lauer said that if nothing else, the study pointed out the need to know more about what exercise actually does.
``If we are going to think of exercise as a therapeutic intervention, like all interventions there will be adverse effects,'' he said.
He said, ``There is a price for everything.''
- full article at NYT link above
- and hundreds of reader comments
----------------------------------------
Yes, around 300 comments before mid-day. Sadly, mostly from those who do not think about those who really can't tolerate exertion - for a variety of reasons.
And, most sadly, many hateful comments about those who are out of shape, with hurtful assumptions as to why.
One problem may rest with the opening sentence in the article:
"Could exercise actually be bad for some healthy people?" (end quote)
I wonder just how thorough of an exam was given to all the participants? How many might have adrenal problems, liver problems, neuro dysfunction, or undiagnosed stealth infections?
Knowing what I know about what lyme can do to a body has taught me that there is so much more to this picture of exercise tolerance.
They also did not call upon the few experts who have seriously studied exercise intolerance. Too bad. -
Posted by Keebler (Member # 12673) on :
- I just posted this at another thread on this topic and thought the exchange would be nice over here, too. -------------------------
Some of us can't grasp anything so lifting weights may not work. Just be sure to not irritate tender joints and tendons.
If lifting weights is not an option (or to add to that)
there are other ways to approach non-aerobic exercise. Tai Chi or Qi Gong can be very helpful and surprisingly strengthening.
Not sure about how Pilates might work for those with joint or tendon troubles but that is also worth looking into. A good instructor can help with alternate ways or suggest certain wrist braces, etc.
"Restorative" yoga, too.
Walking, even just strolling, is a vital exercise as well. Gentle dancing . . . do things you enjoy and can do without equipment at various times of the day, at a whim. -
Posted by Keebler (Member # 12673) on :
- In response, I'm glad to see SixGoofyKids quickly replied (she is a Pilates instructor) --------
Pilates is not only fine for people with tendon trouble and joint problems, it's beneficial because it strengthens the muscles around the joints. People think of it as being like yoga, but it is not.
Both can be done on a mat, however, the vast majority of pilates is done on equipment that provides either assistance or resistance depending on the exercise.
If you go for a semi-private or private lesson the pilates instructor can really tailor the workout for you.
I would look for a studio that offers classical pilates (they will brag about it on their website if they do) or are PMA certified. You want an instructor with more than average training to be able to cater to your needs.
Pilates is good for a Lyme patient because much of it is done lying down in the beginning, so you're not using energy just to stay upright, yet you're still getting solid strength training.
It's also good because by design it is full body every workout. Another benefit is it reaches the deepest muscle groups rather than only superficial.
And, it is not cardio until you are a super-advanced student.
It fits Dr. B's guidelines perfectly.
I found it to be so beneficial in helping me reach remission that I am now an instructor.
-------------------- sixgoofykids.blogspot.com
=================
SGK came back to answer much more detailed questions for those unable to make a fist, grasp with their hands or otherwise with joint problems - and how to safety learn PILATES for strengthening.
[ 07-17-2012, 01:40 PM: Message edited by: Keebler ]
Posted by jlf2012 (Member # 36002) on :
How did all of you find out about your heart problems? What were your symptoms?
Posted by Keebler (Member # 12673) on :
jlf,
I think that most of those with lyme - if they have specific heart symptoms - address it with their LLMD since many regular doctors and even cardiologists are not aware (or fully aware) of how lyme and TBD affect the heart.
The tests early in this tread show how when getting an echo cardiogram down, it's best to have that both lying and standing but most of the time, it's done just lying down and that can miss some things.
Sure, there can be cardiac symptoms that might be independent of lyme and, in that case, a good cardiologist may be of help.
Still, with someone who has lyme, it's best to first talk to your LLMD. THEY will know how to proceed &/or to whom to make a referral.
Certain medicines that a cardiologist may prescribe may not work or could make lyme worse. They may be fine but it just depends on so much. A LLMD MUST be in on all Rx decisions.
For some with lyme, a stress test would NOT be a good thing. Nor the chemical counterpart for those who can't do the treadmill. This is why your LLMD should weigh in all all tests well in advance.
And you should also listen to your body. When suggested I do a stress test, I knew my body could not do it. I was right. I passed out on the treadmill and, just by luck, was not seriously injured or my clothes caught in the machine.
I told them I kept passing out from the slightest increase in walking and they did not believe me. I tried to get a good computer reading from my heart so they could SEE what was going on but my body just could not do it.
That day cost me about 2 months, flat in bed. Still, it probably took many similar experiences before I really checked in and sort of "asked" my body what it could do regarding pushing, etc.
When told I should then do the chemical stress test, I knew I could not stand the endocrine push that it would create.
A different doctor, though at that time I did not even know yet that I had chronic lyme - well, a different cardiologist did a TILT TABLE TEST. The technicians did it wrong.
They did not tell me that as I felt weak and that my legs might give out that I should not pump my legs. That's just something I learned to do on my own, out of instinct.
But, when the doctor came to check, he said that ruined the test results but he was convinced by my symptoms (which he believed when others did not) that I had NMH.
too tired to explain NMH but it's common with lyme - it's in posts way above. Since I could not tolerate the Rx, SEA SALT each morning was the key. And adrenal support. Hawthorn also make a nice help.
I also had various holter monitor tests to check erratic heart rhythm but that was inconclusive. Still, I KNEW my heart would beat all out of synch at times. Unless it can be seen in a test, though, these things are usually dismissed.
And not one doctor even mentioned magnesium. Years later - after the lyme diagnosis - I learned about magnesium. That could have saved me so much confusion, fear and heartache of rejection.
Again, magnesium made a world of difference with symptoms. I've since learned that there's so much I can do for myself.
MAGNESIUM is the best friend to the heart. MANY symptoms can be from magnesium deficiency.
Often, magnesium, fish oil, CoQ10 or other nutrients can help ease symptoms that may not have so much to do with the heart itself but with one of the nervous systems or the endocrine system that would be driving rhythm, etc.
Cardiac support is vital, indeed, for everyone who has lyme. Just as liver and adrenal support is, too.
If you have a specific concern, do talk to your LLMD. Otherwise, the detail in this thread may help with basic support and then you can talk to your LLMD about what would be best for you.
Good luck. -
[ 07-17-2012, 02:29 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Someone in another thread described exercise intolerance from what should be fairly routine non-aerobic workouts in a gym. True, anyone can go too fast when beginning all this but -
- for anyone who is considering joining a gym, this detail in my reply over there may also be of help:
- As you recently joined this gym, the place itself is suspect, too.
The lights - probably fluorescent - are not good for ANYone but can be especially draining for those with lyme & co.
The chemicals used to wipe down the equipment, others' scented products, the off-gassing of equipment itself - the padding and vinyl covers - flame retardants and petroleum products . . . .
Cleaning chemicals for the floor, bug spray (if used) . . . soaps in the rest room or showers and
all the other stimuli: visual; auditory; etc.
All that can be a drain, even if you don't lift a finger.
I know my suggestion will not be a welcome one but, it seems to me that you need to stay away from that place and do similar weight training (you don't really need fancy equipment) in your home or other environment where you KNOW you are fine.
Then, you can get a sense if there is anything in the gym environment that is burdening you.
If you like the company of others in the gym, invite a couple friends to come to your place and create your own little group.
But, be wary of ANY equipment, even yoga mats can be toxic. See what you have around your home that can serve as weights.
A professional may be a good guide here for a few home visits. Just tell them not to wear scented products.
You might also consider PILATES, TAI CHI, or QI GONG. -
Posted by Lymetoo (Member # 743) on :
keebler.. my landlord was explaining to me why fluorescent lights bother some people..
They actually flash constantly .. but you can't see it. Your brain can though!
Posted by CherylSue (Member # 13077) on :
good info, Thanks! I'll check out the pilates.
Posted by Keebler (Member # 12673) on :
- TuTu - yeah, those fluorescent lights can cause some terrible sensations for many with inner/middle ear or seizure issues.
And, I have to wonder if they aren't also huring others who may not even be aware of their impact. Those with irritability, anger, confusion, etc.
On another note,
Exercise Intolerance just came up in another thread. As there are many posts about that here, I wanted to add as I'm reminded of this:
VESTIBULAR (inner/middle ear & balance) ISSUES can also cause someone to not be able to exercise as they'd like.
There have been long stretches of time where I could not even stretch any limb as it caused my head to move and that worsened vertigo and vomiting.
This seems to be more prominent in those with vestibular fistulas but there are so many other considertions in the thread below.
Massage therapy can help those in such a situation so that the body tissue, muscles & tendons gets moved manually while the head can remain as still as possible.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by Keebler (Member # 12673) on :
- EXERCISE INTOLERANCE is discussed in several posts above. Adding to those, a new entry:
EXERCISE INTOLERANCE DUE TO MUTATIONS IN THE CYTOCHROME b GENE OF MITOCHONDRIAL DNA
[Twelve authors ] July 13, 2004 -
Posted by WPinVA (Member # 33581) on :
I was the one who posted about feeling awful after light exercise in the gym. So I took Keebler's great advice and tried doing light yoga at home.
HUGE difference. I did need to lie down for a while afterwards and I even fell asleep briefly. But then, I felt great. Great! Did it again and same thing. And bonus, my six year old likes doing it with me.
My amazingly supportive hubby found a very gentle beginner yoga video on itunes and that's what I've been doing.
I'm glad this came up because I've been delinquent in not doing it for the past couple of weeks due to holiday busyness and I really need to get back into it.
Posted by Keebler (Member # 12673) on :
- WPinVA,
So glad to hear this. Thanks for the details. Makes my day.
You've created your own little "yoga circle" right there. I love that your child enjoys this with you and that your husband is on board, too. What a guy!
If you want any professional assessment or guidance, some yoga instructors may come right to your home -- and if you gather a few friends and their kids, all chip in for the fee.
I'm thinking someone of her style would be very nice for those of us with issues of overstimulation. You might contact her and see who she may suggest.
Her DVDs are very good, too, though I've only seen her on PBS.
A pulmonolgist [just told me that] "is notorious for causing heart arrhythmias."
Discussion in this thread also touches on the errors and deception in the way side-effects of many drugs are reported - so that they can be approved for market and increase profits.
Antidepressants cause bradycardia and heart block in GD 13 rat embryos in vitro. (April 2012)
Excerpts:
. . . . One drug, trazodone, caused arrhythmia consistent with blockade of the hERG (human ether-a-go-go related gene) potassium channel. . . .
. . . The least margin of safety was seen with the tricyclic antidepressants and the serotonin antagonist and reuptake inhibitor trazodone. . . . (end excerpts) -
[ 05-12-2013, 02:42 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- By James Gallagher, Health and science reporter, BBC News - 29 May 2013 -
Posted by randibear (Member # 11290) on :
I had a friend who died of a, what doctors called, a heart infection. She had lyme also. I firnly believe lyme killed her. She had no heart problems until lyme. She wasnt even 50..
Infection my foot....doctors dismissed her lyme issue...
Posted by Lymetoo (Member # 743) on :
Lyme carditis, randi. (or myopathy)
Posted by Keebler (Member # 12673) on :
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