. . . That's why a soon-to-be-published book . . . "Wind Turbine Syndrome: A Report on a Natural Experiment." It's the work of New York physician and ecologist, Dr. Nina Pierpont.
. . . Dr. Pierpont's book says there should be a buffer of at least a mile and a quarter - maybe more - to protect the public. . . . ---
[ 04-22-2010, 02:17 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm going to add a new angle to this interesting discussion on tinnitus.
I have recently been experimenting with strong magnet machine treatments, anywhere from ten minutes to half an hour exposure to strong pulsed magnetic input.
I noticed after the past couple treatments that it was quiet. I didn't get it at first, what was happening, or rather, not happening, since I've had ringing in my ears for the past 24 years or so, from unknown Lyme. The quiet lasted several hours and then the tinnitus returned.
About us and magnetic voltage: Healthy cells are supposed to have approximately a 70 milliamp voltage potential across their membranes. Diseased cells can drop to as low as 15 milliamps, as their electromagnetic energy gets interfered with. So the magnetic machines are restoring electromagnetic health to the body's cells.
And somewhere in that equation, my tinnitus stopped for the first time. So if any of you want to start figuring out how magnetic charge could affect hearing, be my guest...
The temporary peacefulness was a surprise and a delight!
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Keebler
Honored Contributor (25K+ posts)
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posted
- Just saw this at BBC.com - A strong kiss had some serious results - be careful out there:
A young Chinese woman was left partially deaf following a passionate kiss from her boyfriend.
The 20-something from Zhuhai in Guangdong province arrived at hospital having completely lost the hearing in her left ear, said local reports.
The incident prompted a series of articles in the local media warning of the dangers of excessive kissing. "While kissing is normally very safe, doctors advise people to proceed with caution," wrote the China Daily. The doctor who treated the girl in hospital was quoted in the paper explaining what had happened.
"The kiss reduced the pressure in the mouth, pulled the eardrum out and caused the breakdown of the ear."
The chorus of warnings was echoed by the Shanghai Daily, which wrote: "A strong kiss may cause an imbalance in the air pressure between two inner ears and lead to a broken ear drum."
The young woman is expected to regain her full hearing within about two months. -
[ 04-25-2010, 02:49 AM: Message edited by: Keebler ]
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Keebler
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posted
Keeler, didn't see your earlier response to my magnet post until now...
sorry, it won't be the fridge magnets that will quiet your world for you...
google for PEMF - pulsed electromagnetic frequency machines.
The one I treated with was called the magnapulse. A 500 gauss machine, with a white cable that I held over various areas of me as the machine clicked away with its magnetic pulses.
I thought it was a wonderful treatment experience. Reduced pain, made me happy, stopped tinnitus for 6 hours, it's noninvasive.
NOT to be used if anyone has a pacemaker.
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Keebler
Honored Contributor (25K+ posts)
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posted
- Vitamins Protect Against Noise-Induced Hearing Loss ------------------------------------------
Vitamins Protect Against Noise-Induced Hearing Loss
- by Sherry Baker, Health Sciences Editor (NaturalNews)
According the National Institutes of Health's National Institute on Deafness and Other Communication Disorders (NIDCD), about 26 million Americans between the ages of 20 and 69 have hearing loss most likely caused by exposure to loud sounds or noise at work, home, or during recreational activities.
For example, target shooting and hunting, attending rock concerts, snowmobile riding, woodworking, and operating lawnmowers, leaf blowers, and shop tools are all linked to noise-induced hearing loss.
But research just presented at the Association for Research in Otolaryngology's annual conference in Baltimore by University of Florida scientist Colleen Le Prell, Ph.D.,
suggests there's a way to protect against noise-induced and perhaps even age-related hearing loss in humans -- take vitamin supplements containing the antioxidants beta carotene, vitamins C and E and the mineral magnesium.
When test animals were given the vitamins before they were exposed to loud noises, the supplements prevented both temporary and permanent hearing loss.
"What is appealing about this vitamin 'cocktail' is that previous studies in humans, including those demonstrating successful use of these supplements in protecting eye health,
have shown that supplements of these particular vitamins are safe for long-term use," Dr. Le Prell, an associate professor in the UF College of Public Health and Health Professions department of communicative disorders, stated in a media release.
In the first study, UF, University of Michigan and OtoMedicine scientists gave guinea pigs the vitamin supplements before a four-hour exposure to sounds at 110 decibels, a noise level about the same as what people experience at rock concerts.
The animals' hearing was measured by sound-evoked neural activity. The results? The vitamins successfully prevented temporary hearing loss.
In another related study, UF, Washington University in St. Louis and OtoMedicine researchers found that the supplements prevented permanent noise-induced hearing loss in mice that would normally occur after a single extremely loud sound exposure.
The supplements prevented cell loss in the animals' lateral wall, an inner ear structure linked to age-related hearing loss. That has scientists speculating these micronutrients may offer protection against age-related changes in human hearing.
"I am very encouraged by these results that we may be able to find a way to diminish permanent threshold shift with noise exposure," said Debara Tucci, M.D., an associate professor of surgery in the otolaryngology division at Duke University Medical Center, in the media statement.
So how could nutritional supplements protect hearing? The answer appears to lie in their ability to "mop up" free radicals. Free radicals are atoms or groups of atoms with unpaired electrons that can cause damage when they react with important cellular components.
Researchers have discovered noise-induced hearing loss is primarily caused by the production of free radicals, which damage healthy cells in the ear by literally punching holes in the membranes of the cells.
According to the researchers statement to the media, the antioxidants beta carotene, vitamins C and E prevent hearing damage by "scavenging" the free radicals. Magnesium helps by preserving blood flow to the inner ear and aiding in healing.
. . . - Full article at link above. -
[ 07-30-2010, 12:28 PM: Message edited by: Keebler ]
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Keebler
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posted
- Thanks to TerryK, who just posted this at another thread:
The Journal of Laryngology & Otology (1997), 111:562-564
Cambridge University Press Copyright � JLO (1984) Limited 1997 doi:10.1017/S0022215100137910
REVERSIBLE SENSORINEURAL HEARING LOSS IN LYME DISEASE
S. J. Quinna2, B. J. Bouchera1 and J. B. Bootha2 c1
a1 Academic Medical Unit, The London Hospital Medical College, The Royal London Hospital, London, UK.
a2 Department of Otolaryngology, The Royal London Hospital, London, UK.
Abstract
We report a case of bilateral sensorineural hearing loss of two years duration which appears to have been due to late Borrelia burgdorferi infection.
The 39-year-old woman presented with bilateral deafness and multiple other neurological complaints some six months after developing a `target' lesion on the lower leg after walking in the New Forest.
Serology for Borrelia burgdorferi became positive and the patient made a complete recovery from both her deafness and her other neurological problems after a five-week course of oral antibiotic therapy.
Lyme disease is treated with antibiotic therapy, and highly variable response rates of hearing loss and tinnitus to treatment have been reported. -
[ 04-25-2010, 02:58 AM: Message edited by: Keebler ]
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Keebler
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- And whether vestibular effects might be from meds, a herx or infection, here's a connection that NAC can be of help in protecting the inner/middle ear from the effects of some infection.
Since Lyme, too, really goes after the vestibular system this may be of interest. As NAC protects the liver, it also helps to protect the ears.
NAC (N-Acetyl-Cysteine) -------
If milk thistle is not on your plan, NAC might be considered:
This, from a protocol for Chlamydia Pneumonia (Cpn) which is a similar chronic stealth infection. This treatment protocol is also similar to that of chronic lyme.
This is what one of the protocol authors says about the power of NAC to help protet the liver: --------------
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
See attached references.
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
N-acetyl-cysteine (NAC) May Protect Against Meningitis-Related Hearing Loss
Excerpt:
NAC and the other antioxidant each individually protected the spiral ganglion in the cochlea and exerted a number of other benefits to the ear that explained their protective effect. . . .
1 - Ben Balough, MD is the Chief of Neurotology at the Naval Medical Center San Diego. Dr. Balough's presentation was on
``Antioxidants: Their Role in tinnitus.''
Dr. Balough stated that antioxidants such as N-Acetyl Cysteine and Acetyl-L-Carnitine are very helpful in preventing hearing loss due to noise exposure or ototoxic medications.
He says they are not helpful in treating tinnitus AFTER it has developed. -
[ 04-22-2010, 02:15 PM: Message edited by: Keebler ]
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks for the info... it's great. Especially when dealing with constant ringing in your ears!
It drives me absolutely insane at times...Just one of the many symptoms thats like the energizer bunny....
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Keebler
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posted
- Yeah, but if only that humm or buzz would give more energy, eh?
Kreynolds,
have you also addressed heavy metals? Many lyme patients and those with tinnitus often have elevated levels of heavy metals - or other high loads of liver / neuro toxins.
[ 09-25-2010, 03:20 PM: Message edited by: Keebler ]
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kreynolds
Frequent Contributor (1K+ posts)
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posted
Keebler:
No I haven't addressed heavy metals.... I just got a full panel done of blood work and was actually low in Ferretin...
My doc gets all my weekly blood draws and says everything looks great.
Do they check for that on a constant basis??
I even have problems where I will lose hearing in an ear for like ten seconds and I have to shake my head like I have water in the ear!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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'Kete-tracker
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posted
I took a hi-dose of a yeast-free, multi-B Vitamin complex daily, w/ extra B-6, and embarked on rigourous daily exercise/ yard work for a couple months back in my Lyme-free days in the late '90s.
After less than 2 months, my frequent bouts with hi-freq "zinging" tinnitus cleared completely. Not sure if it was more the B vitamins or the exercise, but my ND suggested it... & it Worked! I sorta "burned" it outa me, I guess.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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kreynolds
Frequent Contributor (1K+ posts)
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posted
I am currently on a sublingual B complex and have had no changes...
Boy I wish I could exercise!!! I can barely make it up and down the stairs!!
I'm happy for you because the ringing is so annoying...
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Jill E.
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posted
I just developed mild tinnitus and an ear ache a few days ago. I've been on Zith about two months. I went off it.
But my dilemma is I need to start Babesia treatment, and my doctors want to pair Biaxin or Zith with the treatment to avoid resistance.
What am I going to do? Zith and Biaxin both can cause tinnitus!
Any help would be appreciated. I'm running out of medications, I've had damage from so many.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I went off zithro bec of hyperacusis/tinnitus. My LLMD said we shd wait to try biaxin bec it's in the same family.
I'm still having ear sx, but they're not quite as bad.
Does anyone have experience w/biaxin in terms of hearing issues? If so, can you please PM me? I'm getting confused as to which threads I'm on anymore.
Having trouble keeping up with responses in posts.
Thanks so much. -Sharon
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'Kete-tracker
Frequent Contributor (1K+ posts)
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posted
Jill, I have a freind on here who had a TOUGH time w/ IV zith. Was causing some hearing loss & they ended up switching her meds. But it IS great stuff.
I took oral Zith 8 years ago & it took care of this upper respiratory bug I'd had for >2 weeks! I remember it was a sample box, with just 4 (or was it 5?) red caplets. 2 to start, then 1 a day 'til gone. Never had any ear issue, but it was only "in" me for a week.
I wasn't aware of clarithromycin (Biaxin) causing tinnitus, though. I was on the XL version for a couple months & never had an issue.
What's the core "babs" protocol your doc wants to use? Can you add Artemisinin to it, instead of a 'thromycin'? I've read good things about that one when paired up...even for treating malaria in Africa! Maybe someone here who knows more about babesia treatment can chime in.
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Keebler
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posted
- Biaxin has caused some patients to have tinnitus so bad that they can't continue that med.
I can't tolerate minocycline, zithromax or biaxin (or even allicin) due to the rocket to the moon levels of tinnitus I get from each of them.
And I break out in hot, itchy silver dollar rashes with doxy, on repeated trials over time.
I have found that the Buhner protocol works best for my ears. Far better than anything else. I still have a very long way to go but I'm tolerating this fine.
Andrographis calms down the tinnitus to manageable levels - unless my activities overwhelm my adrenals. Adrenal support - and liver support is vital.
NAC might help lessen tinnitus with on offending meds as might B-6.
One might try adding andrographis as a support measure. Start with just one, though. It has different reactions for different people.
It reduces edema and inflammation. It is mentioned a few times in Singleton's book "The Lyme Disease Solution" and thoroughly discussed in Buhner's book, below.
Andrographis does increase fatigue, especially in the first few weeks, but the calming it did for my brain was well worth that trade off.
This is what I use. Start slowly, reading ALL about it in Buhner first. It will increase fatigue and trips to the rest room as it reduces edema (still drink lots of water, though).
About half way down the page filled with other great abstracts about magnesium, is this: ------------------
Magnesium and hearing
J. Vormann1, M. J. Cevette2, K. Franz3
1 Institute for Prevention and Nutrition, Ismaning, Germany
2 Department of Otolaryngology Head and Neck Surgery/Audiology, Mayo Clinic Scottsdale, AZ, USA;
3 Department of Food Science and Nutrition, Brigham Young University, Provo, UT, USA
The pervasive influence of magnesium on cellular function extends throughout the auditory system.
Magnesium deficiency contributes to an increased permeability of the calcium channel in the outer hair cells
with a consequent over influx of calcium,
an increased production of glutamate,
and over stimulation of the NMDA receptor on the auditory nerve.
Magnesium deficiency also promotes oxidative damage and decreases glutathione.
Other factors that might be important in production of otoacustic damage are reduced blood flow to the cochlea due to increased production of and reactivity to vasoactive substances.
Increased susceptibility to noise damage, drug-induced ototoxicity, and auditory hyperexcitability are linked to states of magnesium deficiency.
Evidence for these processes has come slowly and direct effects have remained elusive because plasma Mg does not always correlate with its deficiency.
Experimental and clinical studies have shown that supplemental magnesium was able to reduce ototoxic events and might be of importance in preventing noise- and drug-induced damage."
(Marnie's note: many drugs also reduce Mg levels.)
============================
Also from Marnie and also about the absolute importance of magnesium:
. . . Individual variations in our cytochrome P450 enzymes help to demystify why there are so many variations in how we respond to drugs and herbs. . . .
- Full chapter at link above.
===================
There are hundreds of herbs that can help liver function. A couple dozen are discussed here:
. . . The important thing to remember is that the liver is a hot (metabolically active) organ, and so tends to get congested and inflamed. . . .
Protection
Turmeric root, wheat sprouts, schisandra berries, amla fruit, beet root and milk thistle seed are among the major sources of protective anti-oxidants for the liver cells, as are fruits that contain flavonoids, especially citrus fruits.
These should be used to prevent development of inflammatory disease, or for damage protection as in the case of persons taking strong chemical drugs or undergoing chemotherapy.
Deficiency
The liver can become weakened and deficient. If this is not corrected, it can lead to liver atrophy and depletion of glycogen stores, even hepatitis. Signs include fatigue, low blood pressure, hypoglycemia, dry eyes, headache, heat symptoms and irritability . . . .
Heat and Inflammation
To remove excess liver inflammation with heat signs or toxins . . . .
Pain
If there is liver inflammation with signs of pain and tension, use herbs that calm the liver and move the blood . . . .
If milk thistle is not on your plan, NAC might be considered:
This, from a protocol for Chlamydia Pneumonia (Cpn) which is a similar chronic stealth infection. This treatment protocol is also similar to that of chronic lyme.
This is what one of the protocol authors says about the power of NAC to help protet the liver:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
See attached references.
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
1 - Ben Balough, MD is the Chief of Neurotology at the Naval Medical Center San Diego. Dr. Balough's presentation was on ``Antioxidants: Their Role in tinnitus.''
Dr. Balough stated that antioxidants such as N-Acetyl Cysteine and Acetyl-L-Carnitine are very helpful in preventing hearing loss due to noise exposure or ototoxic medications.
They are not helpful in treating tinnitus after it has developed.
posted
Tinnitus is very bothersome. Tinnitus with hyperacusis is living hell. Your own body produces a sound your brain can't process and you can't hide in a quiet room or use ear plugs to get away from the ringing. Ugh.
I like this compilation of links; many have been helpful for me. Here are a couple other ideas:
According to Chinese medicine, tinnitus signals problems with the kidneys and liver. Support for those organs is recommended. I have used an herbal formula called Long Dan Xie Gan Tang and a homeopathic called Unda #243, both of which have helped reduce tinnitus to a manageable level while still on lyme killing meds.
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Keebler
Honored Contributor (25K+ posts)
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posted
- Thanks for the post, lyme2health. Are you sure the last word to the formula is TANG?
I have a book with all the Pine Mountain formulas in it, but the last word in my book is WAN, making it Long Dan Xie Gan Wan (Gentiana and Chrysanthemum Formula). I've used this one and, yes, it is a wonderful formula.
Regarding the relationship to the kidneys, too, link adrenal fatigue to the ears. The adrenals are directly over the kidneys and in the same "channel" so that if there is deficiency there, the ears can feel the result. ---
Here's one good article about Tinnitus from the Chinese Medicine perspective:
posted
Keebler, The bottle says Long Dan Xie Gan Tang. It has about 6 herbs, one of which is gentian. I don't know enough Chinese to know if your formula ending in Dan is similar/related, but that seems likely.
Not only does this formula support my liver, but I also seem to kill L form Lyme with it, too. (the same die off rxn and symptoms as when I used doxycycline). Combining it with andrographis does well for me. I have no ringing unless I add it artemesia types to kill Babs, but I got to kill Babs so I just try to keep the ringing to a minimum.
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Keebler
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posted
- lyme2health,
thanks. I just sent you a PM as I'd love to know the brand. It's curious to be so close to this other formula and I want to study the differences, etc.
What helped me with mine. Eventually it left me after 6 weeks of HBOT at 2.4 ATA two treatments a day in a monoplace chamber while I had a PICC line in getting Claforin. I had maintenance shortly therafter for two weeks
I just read the article on MSNBC about Sue who had late-stage Lyme and committed suicide with Hyperacusis being one of her worst symptoms and I want to tell everyone, it can go away. Mine was pretty bad but eventually it got down to the point where I could use a white noise machine and then nothing at work with barely any cubicle separating my coworkers and I.
Please don't give up if you have it very bad it can go away next time you have an upside in your relapse/remit cycles.
-------------------- RB -
[ 02-13-2010, 01:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
copying this story here since it was posted today; i received by regular email and didn't know it was posted on lymenet.
i sent comments; PLEASE DO TOO! ---------------------------------------------------
i copyied/broke up below for us all..bettyg, iowa activist
All she lost: My sister's battle with Lyme disease
After a decade of unbearable side effects, she decided to end her life Image: Sue dancing with John Sue Baiata, shown dancing with her brother, John, at his 2001 wedding, developed advanced Lyme disease in the years after being bitten by a tick.
One of the side effects she experienced was hyperacusis, a sensitivity to sound so severe that she tried to find a doctor willing to surgically deafen her. View related photos Courtesy of the Baiata family
Hubble team makes tough job look easy Hubble gets last hug: `Good voyage!' Spacewalkers cope with Hubble troubles Surfer saves young kangaroo from drowning Hubble repairmen turn to brute force Most viewed on msnbc.com Obama to unveil big increase in required mpg Feds accuse Wyeth of cheating Medicaid OMG! Teens go 10 days without texting, tech Son's messy room leads to dad's 911 call Cheap countries to see in the recession Most viewed on msnbc.com
By John Baiata
NBC News producer
updated 7:14 a.m. CT, Mon., May 18, 2009
The phone had not even finished its first ring before my wife, Anna, snatched it from its cradle.
Concern was etched in her face as she handed me the receiver: ``It's the police. It's about Sue.''
My stomach dropped. My older sister had disappeared the day before and my family feared for her safety.
``I'm sorry to have to tell you this,'' the police lieutenant said in an even voice, ``but we found your sister dead this afternoon. We have reason to believe it was a suicide. We're here with your mother now.''
I fought the urge to scream as my mind went in a million directions. ``Do not leave my mother by herself,'' I urged the lieutenant over the phone. ``I'll be there in a little more than an hour.''
I lurched outside and clung tightly to the deck railing, while everything else seemed to spin violently around me. Anna grabbed me with both hands. ``What happened?!''
``She really did it this time,`` I said. ``She killed herself.''
In the decade or so before Sue took her own life at age 46 on August 21, 2005, my sister Dawn, my mother and I had become all too familiar with advanced Lyme disease, which had slowly, inexorably diminished Sue's life.
Sometime in the mid 1990s, my sister contracted Lyme disease, likely through being bitten by a deer tick or black-legged tick.
The bacterium that had introduced itself to Sue's bloodstream went undetected, and then was misdiagnosed for the better part of two years.
Identified early, a short course of oral antibiotics will cure the majority of cases of Lyme disease -- more than 27,000 cases were reported in the U.S. in 2007 -- and wipe out the typical symptoms of headaches, fatigue and a circular rash near the area of the bite.
But left untreated, the disease can affect the heart and nervous system, causing joint pain. Sue faced a parade of symptoms including migraines, severe pain in her neck and major joints and staggering exhaustion.
Each one narrowed the prism through which she lived her life.
Sue had to leave her job as a facilities manager to go on disability, and lived with my mother in the Long Island home where we were raised.
On her good days, she would spend hours in the gardens she had lovingly cultivated in the expanse of the backyard.
More than likely it was there too where the tick which bore the disease that would seal her fate attached itself to her.
Q&A Close Up Of An Adult Female And Nymph Tick Is Shown June 15 2001 On A Fingertip Ticks
Lyme disease Learn about the most common tickborne illness in the United States, from symptoms to treatment and prevention.
msnbc.com On her bad days, she would stay in bed with the shades drawn, cuddled with the dog she loved unconditionally, her beloved Chihuahua, Katie.
She would emerge only briefly to have some tea and a bite to eat, and a few words with our mom.
Still, she had accepted what her life had become. On those good days she could still fill the room with laughter.
She would mine the late-night comedians for material but never really needed to. Making people laugh came naturally to her.
Her life became more attuned to the seasons than ever. She knew instinctively how to grow just about anything.
She kept a pair of pruners in her car in case she happened across something that would make its way into one of her many centerpieces.
One fall while driving through a rural part of northern New Jersey, she forced me to pull over to the side of the road, disappearing into a thicket of brush and trees.
She emerged moments later holding a fistful of exotic-looking flowers over her head, grinning ear to ear like she'd just been handed an Oscar.
One Christmas season, in a burst of energy, she decorated the entire house while my mom was at work.
The memory of walking through the front door that day still lights up my mother's face.
The agony of sound Despite what Lyme disease had already taken, it was not done with her.
A crueler, more insidious phase awaited. She began to develop an aversion to noises that had never bothered her before.
Everyday sounds like the closing of a door or the cry of a child would cause her to cringe.
A passing lawn mower or motorcycle would send her running for her room.
The disease's attack on her central nervous system had brought on hyperacusis, a severe sensitivity to sound. And it became progressively worse.
It was as if a volume dial, set on high, had broken off, and everything in her aural experience was overmodulated.
Softer sounds were tolerable. Sharper sounds were not, and painfully so for her.
Image: Sue and her family Courtesy of the Baiata family John Baiata could always count on his sister Sue to offer a listening ear when he needed to talk -- and to introduce him to the latest music. Pictured in this family photo from the 1970s is Sue, far right, John, next to her, their sister Dawn, far left, and mother, Patricia. Hyperacusis, which can be brought on by trauma to the inner ear, is also thought to be a processing problem with the way the brain perceives sound, which seems much more likely in my sister's case.
Dr. Paul Auwaerter, clinical director of infectious diseases at John Hopkins University School of Medicine and a leading specialist on Lyme disease, describes hyperacusis as ``a bit like the old fashioned AM radios.
When you turn the ``gain'' button up you get more stations, but you get a lot more static, too.''
One of the enduring frustrations for my sister, and for those of us who loved her, was the failure of her doctors to recognize what was wrong.
She was misdiagnosed twice in the early stages of the disease -- once with Chronic Fatigue Syndrome, the second time with Epstein-Barr virus.
She was accused of exaggerating her symptoms to avoid work, or inventing them in order to get pain medication.
By the time anyone thought to give her a definitive blood test for Lyme, the disease was on the march.
Patients treated in the early stages -- within about two to four weeks after the onset of symptoms -- usually make a complete recovery.
Not everyone is so fortunate.
``It's hard to put a number on how common misdiagnoses are, but early detection can be difficult," says Auwaerter.
"It takes the body some time to generate enough antibodies to show up in testing, and the symptoms are common to many other ailments.
There's a general sense that if you have the infection longer, you'll have extended symptoms.''
Newsvine discussion: Talk about this story
For those who are diagnosed late and have persistent symptoms, some doctors will prescribe an extended antibiotic regimen.
That is a controversial approach, however, as several studies have shown it not to be an effective strategy.
There is also considerable debate in the medical community and with advocacy groups over some of the symptoms of ``advanced'' or ``persistent'' Lyme disease, like Sue had, and how to treat them.
One theory, based on research studies, suggests that people who suffer from post-Lyme disease symptoms ``may be genetically predisposed to develop an autoimmune response that contributes to their symptoms.''
CONTINUED : 'It's like they're screaming'Sue was determined to deal with the progression of the disease -- and especially the hyperacusis -- on her own terms.
She went on the Internet and did exhaustive research.
She kept in contact with another sufferer of advanced Lyme who lived in New Jersey, comparing notes on their progressive symptoms.
And she ping-ponged from specialist to specialist, desperate to find someone who could help, someone who believed her.
She took to wearing ear-plugs, then sound-proof headphones. But it was akin to spitting in the ocean. It made no discernible difference.
``Sometimes,'' she told me, ``when people are talking to me, even if they're whispering ... it's like they're screaming.''
My mother found her one day in her room, unresponsive and foam coming from her mouth.
A long suicide note was tucked in a dresser drawer. She'd taken a bunch of pain pills from two prescription medications, but would live.
When I arrived at the hospital my mother was outside stealing a cigarette, crying and ashen.
When Sue came to, she was enraged that my mother had intervened.
In the days after, an uncomfortable dynamic followed:
Dawn and I were naturally supportive of my mother, and yet entirely empathetic to my sister's situation.
A common enemy soon emerged, however.
Her doctors wanted her committed to the psychiatric ward.
We argued vehemently that she was not crazy. She was suffering from the advanced stages of a debilitating disease, and had left behind a reasoned, lucid note explaining her actions.
Q&A Close Up Of An Adult Female And Nymph Tick Is Shown June 15 2001 On A Fingertip Ticks
Lyme disease Learn about the most common tickborne illness in the United States, from symptoms to treatment and prevention.
msnbc.com We eventually got her home and struck a wary truce: we would redouble our efforts to help her navigate the maze of health-care providers in search of some relief, and she would simply not give up.
She was sent to a therapist, and placed on medication for depression -- something she had struggled with even before contracting Lyme disease.
In search of a quieter neighborhood without the noises that were agony for Sue, my mom reluctantly put the house up for sale -- the one that held so many memories for all of us, and Sue tore herself away from the gardens she loved.
They moved, and then moved again, finally settling in a 55 and older community that they thought offered the quiet my sister so desperately sought.
The first day the landscapers came by with their torturous weed-wackers, it became clear there would be no silent refuge.
Asking to be made deaf
Sue came to a drastic, but, given the circumstances, reasonable conclusion: she wanted to be surgically deafened.
My sister -- the same one who turned me on to all manner of wonderful music, who liked nothing better than lying on the beach listening to the sounds of the waves and seagulls, for whom peals of laughter were a siren's song -- would rather go deaf than endure any more pain.
Now all she had to do was find a doctor who would do it. No doctor would.
They either did not believe the extent of her pain, felt it was too drastic a measure, or cited the ``do no harm'' tenet of the Hippocratic oath.
The last time I saw my sister alive was on one of her good days, in the summer of 2005.
I had driven out to Long Island on a Saturday, and we spent the day together.
We took a drive, and she asked me what music I was listening to. She could barely stand listening to music anymore, but she still wanted to know what was out there. I played a few tracks for her at the softest volume possible, and she laid her head back and smiled.
Later, we went for a swim and she cracked a few jokes about sharing a pool with a bunch of people 20 and 30 years her senior. Looking back, the day seems impossible. A mirage.
Image: Sue by her jeep Courtesy of the Baiata family Sue Baiata in the late 1990s at a beach on Long Island, one of her favorite places. Later that week, I called to see if it was OK to come out that weekend with my family.
Sue was godmother to my oldest, Alexa, but had yet to meet my son Luke, who at the time was 3 months old.
She wanted desperately to see him -- and I to show him off -- but she was fearful of the noise a crying baby would make.
She urged me to come, and offered to leave the house in order to avoid the noise. I put the visit off again -- a decision I regret to this day.
When my sister attempted suicide the second time, she was determined that there would be no intervention.
Sue was up and dressed early that day in August, and told my mom she was going to the mall.
She called later that day to say she had met a friend and would be home late, not to worry.
Instead, she checked herself into a motel along a busy stretch of New York highway, affixed a bunch of morphine patches to her body, and lay down to die in an empty motel room. There was no note.
I think, in Sue's mind, her actions no longer required an explanation.
In the days following her death, my sister Dawn and I did our best to simultaneously deal with our grief and to support my mother, whose own grief had turned her near catatonic.
The thought of never seeing Sue again, of never touching her or hearing the sound of her voice, was overwhelming.
What was most painful for me was the knowledge that she would not be around to see my children grow.
She'd never again get to spoil her goddaughter. And she had never met my son, Luke.
The day of her funeral, the visitation room was closed to all but immediate family just before her body was to be moved to the church.
I walked in with Luke in my arms, and closed the door behind me. I placed his tiny hands in mine, and pressed them against my sister's casket. ``Sue, this is my beautiful boy, Luke,'' I whispered.
``Luke, meet your wonderful Aunt Sue.''
Newsvine discussion: Talk about this story
I have a favorite picture I keep on my dresser of Sue with her arms wrapped around me on my wedding day.
Her face is lit with undiluted joy. Joy for me. Joy for the moment.
There are times still when my longing to have her back hurts as deeply as the day she left us.
But mostly when I think of her now, I think of all the times, and all of the little ways she expressed that same unbridled passion for life.
My sister fought valiantly against a disease that had diminished the quality of that life to a level that was no longer acceptable to her. It never once diminished her spirit.
Through it all, all she really wanted was relief to her pain, and for someone to believe her story.
John Baiata is a senior editor with NBC News. � 2009 MSNBC Interactive. Reprints
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Keebler
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- Here's something else to also consider (I have lyme and also probably this, according to CT scans).
So, even if someone has lyme, if lyme treatment does not curtail hyperacusis, they should be evaluated for SCD. Only a handful of specialists know how to to do that. ---------------------
Superior Canal Dehiscence -- ABC news VIDEO - nine minutes - on YOU TUBE
posted
I did something this past year that stopped the tinnitis for six hours.
I treated with a magnet machine, called a PEMF machine, 500 gauss - a little machine clicking away, sending magnetic currents into us via us holding a coil near the bod.
So...always new things to be learning about - this time, that an electromagnetic boost to the bod could calm the auditory nerves.
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Keebler
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- So, if any one is so lucky as to get a nice convertible ride on a brisk autumn day, be sure to wear your ear plugs.
Remember, too, that antibiotic use lowers the threshold at which sound can damage ears. Ear plugs are advised when around a hair dryer, a vacuum . . . .
Driving a convertible car can seriously damage your ears, experts have warned.
Cruising with the top down at speeds of 50-70mph (80-112km/h) exposes the ears to sound levels sometimes nearing those made by a pneumatic drill, they argue.
Long or repeated exposure to this noise of the engine, road, traffic and wind could cause permanent hearing loss, a US meeting of ENT experts was told.
Researchers said convertible drivers should consider wearing some form of ear protection, as motorcyclists do. The research has been published in the journal Otolaryngology - Head and Neck Surgery.
In the study, noise levels immediately to the left and right of the driver were measured while travelling at different speeds.
. . . "Regular exposure to noise levels of 88-90 decibels when driving a convertible for several hours a day can lead to permanent hearing loss over time. . . .
. . . . - full article at link above. =======================
Noise levels:
A quiet room at night - 20 decibels
An ordinary spoken conversation - 60 decibels
A busy street - 70 decibels
Shouting - 80 decibels
A pneumatic drill - 110 decibels
Aircraft taking off - 130 decibels
Source: The Royal National Institute for Deaf People -
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Keebler
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- "The loud ringing in my ears."
"The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke."
=====================
Update on the Park Ranger, who at the end of this documentary, said it took several years of treatment. ------
As we shot the final scenes in UNDER OUR SKIN [shot before the narration] I was trying to live without antibiotic therapy.
My doctors and I had attempted this before but within a couple of weeks of quitting, each time, I quickly got worse--the memory loss, the feeling of drunkenness, the disorientation, the arthritis in my hands, feet, shoulders, and knees. The fatigue.
The loud ringing in my ears.
The terrible sleeplessness.
The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke. . . .
. . . But as Andy Abrahams Wilson and his crew recorded my narration for the film in late 2007 I was making it. I wasn't getting worse. In fact I felt pretty darned good.
Today, in January of 2009 I'm still off antibiotics and I'm doing well. . . .
- very long, thoughtful post continued at link above.
A recently published study investigated the effects of curcumin, a constituent of the botanical turmeric, on changes in cognition and memory caused by stress. . . .
In this new study, researchers investigated the effect of curcumin supplementation on stress-induced learning defects in mice. . . .
The results of the study showed that curcumin reversed memory deficits in a dose dependent manner, meaning increasing dosages of curcumin provided increasingly improved memory in the mice.
In addition, curcumin reversed the stress-induced increase in the levels of serum corticosterone, the primary hormone secreted during the stress response.
The researchers also found that the effectiveness of curcumin was similar to the effects of a tri-cyclic antidepressant.
. . . inhibited changes due to corticosterone-induced toxicity including preserving nerve cell connections, and inhibiting the corticosterone-induced activation of the enzyme calcium/calmodulin kinase II and stimulated glutamate receptor expression, which play a role in neurotransmitter secretion and certain kinds of memory and learning.
The researchers concluded, ``Thus, curcumin may be an effective therapeutic for learning and memory disturbances as was seen within these stress models, and
its neuroprotective effect was mediated in part by normalizing the corticosterone response, resulting in down-regulating of the phosphorylated calcium/calmodulin kinase II and glutamate receptor levels.''
Turmeric is not the same as Curcumin. Curcumin is sort of the extract strengh. Turmeric is weaker but still has some benefit.
You can also just take a teaspoon (or more) of turmeric, mix in a little water to make a paste, then add more and drink. Chase with clear water. Two or three times a day.
I've done this in the middle of a meal - or a snack - with the best results. While not at all spicy hot, you want to be sure to clear your throat and esophagus afterward as the powdery nature could start a cough.
It won't be the same therapeutic dose as curcumin but I recall when I did this years ago that I saw some good benefit.
You might check out Frontier Foods site (out of Iowa) to buy a whole bag of turmeric.
Bugg posted a favorite brand in a recent post: Longvida Curcumin to stop this inflammation....I take it along with 5,000 IU daily of vitamin D. -
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lightparfait
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posted
I have taken Curcumen,"Enhanca", as it is recommended as one of the best products for the autism community with great results for them.
I have experienced some relief, but this needs to be added each day. Has helped my joint and knee inflammation. But not cured it...not taken it away totally, but just make it more manageable.
I'm sure it helped brain issues as well to some degree. I do feel the natural spices are helpful!
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lightparfait
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posted
I"m also onto looking into dental work as one of the root causes for some of these symptoms.
Anyone here with Tinnitus and balance issues have dental work (crowns, implants, root canals , extractions) prior to theses conditions starting?
I am very curious about this. Thanks. LP
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Keebler
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posted
- lightparfait .
You might ask these organizations for relevant literature and observations: -----------------------
THE HYPERACUSIS NETWORK
. . . consists of individuals who have a collapsed tolerance to sound.
Keebler
Honored Contributor (25K+ posts)
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posted
- New Noise Cancelation Head Phones ----------------------------
I just posted this at another thread and realized that it should be here, too:
You might check out the new Bose QC 15 noise cancellation headphones. I just got a pair (time payment is nice with Bose).
They are not perfect and will not cancel all sound or vibration but this is the best model on the market - and I've tried them all. This is my fifth version of Bose. They've done much better this time.
One note, these cannot be worn for long periods of time by someone sensitive to EMF and vibrations. There is electronic stuff going on inside the ear muff in order to cancel the sound and that action does raise my tinnitus.
Still, when the brigades of leaf blowers invade, the QC 15 is saving lives on my block, literally. For those who can still go to the grocery store, the QC 15 should work better at calming the beeps at the check-out lanes.
When I just can't do dishes because of the noise of my fridge - or the noise of the running water - these can help. But I don't think they are good to use all the time for such purposes for a couple of reasons but I'll not get into all that.
The QC 15 set is moderate protection against sirens. Just moderate - and not much help with the high pitched fast pulsing sirens that could blast through a building - but still better than any others I've used.
I have to remember that because sound travels through the body, with bone conduction - and even through open nasal passages on to the sinus bones and beyond - that no external device can be perfect. But the QC 15 can help me not be so jarred from what sounds it can address.
And, remember, everyone - adrenal support is SO important.
BOSE Quiet Comfort 15 (QC 15) Noise Cancelation Head Phones
$300 - however, they will divide this in to $25. monthly payments.
If your doctor lists this as a medical necessity (a hearing device, for hyperacusis and that medical code) it should be tax deductible. -
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Keebler
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- MICUL posted this FABULOUS NOTE - his TRIUMPH over HYPERACUSIS - at a recent thread discussing hyperacusis:
It reminds us all of the absolute importance of adequately addressing lyme (and also other infections) with a skilled LL doctor:
----------------
micul writes:
I use to have it really bad also before I found out what was going on and started abx. My neighbors kids use to drive me wacko when they would play in front of my house.
I couldn't sleep without xanax or something else, and then I would still wake up at 2 AM and then just lay there until it was time to get up.
I could only watch certain TV shows like cooking shows and documentaries because I couldn't stand violent outbursts of any kind, esp gunshots. Track laughter would drive me crazy also, so that took out all the comedy programming.....whah!!!
I would have to wear my headphones in order to watch TV with any one else in the room so that it could be turned up loud enough for them to hear it.
But that nightmare has loooong since past. I sleep like a baby every night (for years now) without anything but 2 mg of timed release Melatonin. I use to twitch all day every day also (completely gone for over 2 years after stopping all mag and other supplements).
Turns out I had just about every infection, including Microfilariae. So just to let you know, these things can all be conquered!!!
And I did it all on orals.....no IV abx
(micul - Member # 6314 ) -
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Keebler
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- Other infections - and liver disorders or liver stress are intricately connected to our ears.
In addition to lyme and the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
[ 07-30-2010, 04:10 PM: Message edited by: Keebler ]
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Keebler
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- As lyme (as well as toxic overload) often attacks the inner/middle ear and parts or all of the vestibular system (inner & middle ear / hearing / balance chambers):
INNER EAR ALTERS BRAIN BLOOD FLOW
Excerpt:
. . . For example, some people who suffer from faints and dizzy spells when they stand up quickly, known as postural hypotension, could have poor brain blood flow linked to underlying inner ear problems, he said. . . .
Sidebar: `` Standing up places the head above the heart and thus makes it harder to provide blood flow to the brain '' Dr Jorge Serrador
Caption to a photo of an ear: ``The balance organs live deep inside the ear''
Page last updated at 00:00 GMT, Sunday, 27 December 2009
INNER EAR ALTERS BRAIN BLOOD FLOW
Minute organs hidden deep within the ear appear to directly alter blood flow to the brain, scientists have revealed.
Until now, experts thought the inner ear's job was to control balance alone.
But Harvard medics working with Nasa found that as well as helping us keep our head, the balance organs affect brain blood flow.
They told BMC Neuroscience journal that the connection probably evolved to enable man to stand upright and still get enough blood up to the brain.
The organs of balance are deep within the ear, inside a maze of bony chambers.
OFF KILTER
Two sacs, called the utricle and saccule, make up the inner ear's vestibule and three fluid-filled loops, known as the semi-circular canals, detect the rotation and tilting movements of the head. Dr Jorge Serrador and his team from Harvard Medical School asked 24 healthy people to undergo a range of tests normally used on astronauts.
These included a tilt test where the individual sits strapped to a chair that is then tilted to different angles, plus a ride inside a giant, spinning centrifuge.
In this way, the researchers were able to stimulate the different parts of the balance organs and monitor the effects on blood flow around the body.
This revealed that the utricle and saccule, also known as the otoliths, directly affected brain blood flow regulation, independent of other factors, such as blood pressure.
Dr Serrador explained why the connection may exist: "Standing up places the head above the heart and thus makes it harder to provide blood flow to the brain.
"Having a connection between the otoliths, which tell us that we are standing, and the cerebrovasculature may be part of the adaption that allows us to maintain our brain blood flow when upright.
"The knowledge gained from this study might lead to new treatment options for these conditions."
AGE LINK
For example, some people who suffer from faints and dizzy spells when they stand up quickly, known as postural hypotension, could have poor brain blood flow linked to underlying inner ear problems, he said.
Ear, nose and throat expert Andrew McCombe, of ENT UK, said the balance organs may be one of the many reflexes that ensures our blood is sent to where it is needed.
"It makes sense that any organ that tells you that you are standing upright and not lying down will do this.
"And we know that as we age the whole inner ear does not work so well, so this may be involved in postural hypotension."
But he said it was only a small part of the equation, alongside the heart and blood vessels.
[ 02-15-2010, 02:19 PM: Message edited by: Keebler ]
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Keebler
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- MUSIC HELPS REBUILD NEURAL PATHWAYS -- From CBS "SUNDAY MORNING"
January 24, 2010
Excerpts:
. . . The accident fractured her pelvis, damaged her spine, and Gardot suffered a traumatic brain injury that affected her memory, her speech, and left her hypersensitive to light and sound . . . .
. . ."My mother dropped a dish on the floor one day and the sound made me collapse," Gardot said. . . .
. . . Gardot never gave up. Slowly . . . it would take years . . . music therapy began to rebuild the neural pathways in her brain. . . .
[ 02-15-2010, 02:18 PM: Message edited by: Keebler ]
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Keebler
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- As ears are affected by liver toxicity and since many sleep drugs can stress the liver -- and adrenal exhaustion is also connected to ear problems (especially hyperacusis):
About Stuffy ears - and what can help. -
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Keebler
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- This past weekend, a poster introduced me to the "wobbly possum virus" - Hmmm. While this "wobbly" thing could be from inner ear &/or from brain or nerves independent of ears - those of us who seem to be "all ears" might want to learn more.
It'll probably be a while before I can give this some study, so here's a start: ---------
. . . History . . . The first antibodies to Borna virus in humans were discovered in the mid-1980s. Since then, there have been conflicting results from various studies in regards to whether an association exists between the agent and clinical disease.
Antibodies to Borna virus, which indicate prior infection, and Borna virus antigen have also been detected in blood donors. . . . -
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Keebler
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- Thanks to seekhelp for finding this.
See what Dr. Blaylock says about Meniere's (which many lyme patients have been misdiagnosed as having - or with it as just part of the bigger lyme picture).
He suggests that Meniere's is linked to excitotoxicty. (Which can be lyme, other infections, various toxins, ototoxic drugs, etc.) See what he suggests can help:
Column Two: Meniere's and toxins. -
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MichaelTampa
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posted
Much earlier in this thread, daise mentioned that orthogonal chiropractor with myofascial therapy as being helpful for her tinnitus.
I am not familiar with orthogonal chiropractors, but want to share the name of one place the does work which is similar. The St John Clark Pain Treatment Center in Clearwater Florida does very excellent work. They properly measure for leg length differences that can offset and end up curving the spine. With proper foot inserts, and some myofascial therapy, it can all be straightened out. My tinnitus also reduced during this treatment.
For those not in the Tampa/Clearwater Florida area, the founder of this place developed the technique, and they have taught other practitioners all over the country and beyond. They happily give referrals for those interested in treatment where they live.
I want to echo daise's comments that conventional chriopractors often do not do this type of work properly. They often incorrectly measure for leg length differences. The approach taken by the St. John Clark Pain Treatment Center is far superior to that taken by most chiropractors.
Michael
[ 03-31-2010, 05:03 PM: Message edited by: MichaelTampa ]
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Keebler
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- With thanks to AL and MARNIE for finding this.
It's actually one surgery that was recommend for me years ago. I'm still not what sure to think about this (would magnesium have worked? I need to re-read it a few more times) but the patient apparently did well and the author sure seems to understand that lyme can really mess up the ears.
A young man's ear pain was constant and debilitating, but doctor after doctor could not find the cure.
Discover Magazine - April 2010, pages 28-29
Excerpts from the second to last paragraph:
`` . . . Was the Lyme disease responsible for his ear agonies? I would say yes. The disease certainly has many far-reaching neurological symptoms. . . .
. . . spirochetes, bacteria that cause an insidious range of health issues. . . ."
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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