Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
daise
Unregistered
posted
Hi everyone,
Keebler provided the good information with links on tinnitus, which follow. After that is my personal journey into figuring out the various causes of my own tinnitus.
You might think of it as a check list!
Tinnitus, or part of a tinnitus problem, is sometimes rather unique to you and your condition.
With detective work, we hope you'll get your tinnitus problems figured-out and in the process you'll feel better, sleep better because you're head will be quieter and maybe you'll even figure out a condition you never knew you had.
For many, Lyme itself is a cause of tinnitus, as is Zithromax.
Good Luck!
~Keebler's Links follow ~
================
VESTIBULAR LINKS
PubMed has medical abstracts from around the world.
THE AMERICAN SPEECH--LANGUAGE--HEARING ASSOCIATION (ASHA)
. . . is the professional, scientific, and credentialing association for more than 127,000 members and affiliates who are audiologists, speech-language pathologists, and speech, language, and hearing scientists
21st Century Veterans Health: Hearing Impairment, Audiology, Ototoxic and Noise-induced Hearing Loss, Veterans Administration Independent Study Course (Ring-bound) by U.S. Government (Ring-bound - Mar 3, 2007)
daise, your story isn't below like you said! i learned alot from it...the copy you sent me earlier tonight.
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daise
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LymeBlog News Lexington KY USA LymeBlog News staff www.lymeblog.com October 15, 2007
Helping Ourselves Diane J. Marie, patient advocate
Tinnitus--Ringing Between The Ears
Before I figured-out that I had chronic Lyme disease, I worked at bettering my tinnitus. I found that often tinnitus is metabolic mayhem, a result of the mess of disease, hormone levels too high or too low and hundreds of cellular co-factors in flux, often due to multiple conditions.
Five factors improved exasperating noise between my ears
1.] I learned about getting optimized treatment for my hypothyroidism. Being low thyroid means the thyroid gland in the neck isn't making enough thyroid hormone. The pituitary in our brain screams that our body needs more and that screaming can be measured with a TSH test.
I take both Levoxyl (thyroid hormone T4) and Armour Thyroid (containing both T3 and T4) compounded for time-release by a compounding pharmacist. T4 is stored in our body; T3 acts quickly and needs to be made available slowly, by time-release.
With Armour, the Sun rises in my head! Though it's a mighty foggy Lyme Sun. T3, in the form of Armour (or Cytomel) does wonders for the workings of my brain, trying to recover from Lyme. Most doctors boo-hoo this, but it's like Lyme--when treatment helps you, you go with it!
Thyroid hormone affects every cell in our body, from the top of our head clear down to our big right toe. T4 locks-in to cells, converting to T3--little logs for our metabolic fire. Can that process be interrupted by Lyme cell damage? Lyme lives in and damages many of our cells.
Can cells with enough T4 locking in for conversion to T3 help us fight Lyme better?
Too much, and we're hyperthyroid: we're nervous, jittery, our heart thumps, blood pressure goes up, headaches increase and more.
Problems with T3 working at the cellular level are frustrating, because it's off the scope of conventional medicine, which denies its existence.
Most doctors don't know we have cells. Knowing this is crucial for Lyme recovery because if we lack T3, or it's not bioavailable, our immune system won't function well. We Lyme folks need our immune system to function well in order to work in partnership with antibiotics.
Disturbing tinnitus is also a symptom of hypothyroidism. Infections are another symptom--and boy do we have a Lyme infection/coinfections!
Signs and symptoms are many: fatigue / exhaustion, feeling cold when others do not (more apparent in northerly climates,) digestive problems and constipation are beginning troubles, though they may be masked by Lyme or meds.
After that: foggy head, sleep apnea, insomnia, tinnitus, infections, carpel tunnel, dry hair, hair loss, weight gain, high cholesterol and lipids, high or low blood pressure, bradycardia (slow heart rate,) depression and much more.
Each low thyroid patient needs to find brands and dosages that work best, for them. For enormous help see, Living Well With Hypothyroidism, 2005 Edition, by Mary J. Shomon.
Her website www.thyroid-info.com offers tremendous search help and ties into her about.com site. At her ``Top Docs'' page you may find a local doctor to help you. Maybe your insurance will pay for that doc.
Having any disease when we have hypothyroidism, and getting it treated and then optimized makes everything work better! I've also found that having Lyme disease and hypothyroidism means continually evolving thyroid care, such as med dosage.
In the general population, hypothyroidism is so common it's pathetic--epidemic. Thyroid issues are many. Along with other body-wide help, optimizing hypothyroidism lessened my tinnitus!
2.] Still, my head rang between my ears. I'd lie in bed appalled at the noise, unable to pass into sleep night after night `til the early hours, making more stress, frustration and pain.
I'd had insomnia for over 4 decades.
Fatigued to Fantastic Revitalizing Sleep Formula by Enzymatic Therapy helped me fall asleep and put me into 4th stage healing sleep, the sleep to help heal anything. It's a beautiful formula on the face of the Earth, balancing valerian and passionflower with other ingredients.
The way to know if you've found the right dose is when you feel better in the morning.Deep sleep made my tinnitus better the following night, night after night.
When herxheimer pain prevents me from falling asleep I also use a small dose (1 mL) of Source Naturals Melatonin, liquid or spray (capsules don't work.) Be sparing with melatonin doses as it's a powerful hormone.
3.] I'd been to a very good physical therapist with love in her heart, who helped me raise my right shoulder blade with exercise. I became a little more balanced. She used ultrasound (heat) at the back of my neck, huge heating pads, craniosacral therapy and neck traction. Muscle pain and range of motion improved a bit.
I told her my worst symptom was constant, severe head pain. She thought I had myofascial trouble. That wasn't a therapy they offered, yet she arranged for a fellow therapist, to try. This therapist, also with love in her heart, performed a maneuver on me that lessened my head pain!
After things settled in my head, my tinnitus lessened a bit.
To demonstrate how powerful this healing was, it meant I could immediately take more thyroid hormone, which I needed, to be optimized. You see, before this, taking more thyroid hormone had increased my head pain. Oh! The woes of we Lyme patients.
I had a painful partly-locked shoulder caused by trigger points--knots of metabolic waste in my muscle fascia causing referred pain (on top of Lyme pain in my muscles, though I didn't know it.)
The Trigger Point Therapy Workbook, by Claire and Amber Davies, is eloquent and precise--the best book to explain what myfascial trigger points mean and what needs to be done. I stopped counting at 62 trigger points everywhere.
When I studied the book carefully, I got rid of some trigger points, some pain and gained a bit better range of motion.
However, it was apparent I needed the best therapist in town. Armed with knowledge from studying the book, I knew what questions to ask as I interviewed crooks around town (though the Davies' method can differ.)
Four months later, I found him, with love in his heart and expertise! After several sessions he'd unlocked my shoulder more, lessened my severe, constant head pain--thank you very much--and improved my range of motion.
He'd made ringing between my ears a little better. Hurray! Still, we knew something else was very wrong.
I had yet to arrive at my Eureka! moment of discovery, that I had chronic Lyme.
Please note: Many with severe hypothyroidism can develop trigger points in unexpected places. When meds don't include T3, then when you get myofascial therapy, trigger points will come right back.
Many with muscle pain have, or also have, trigger points, when they don't have hypothyroidism--even taking multiple painkillers, not knowing it's a myofascial problem.
If you think you might have trigger points--don't stretch. For example, don't reach up to a microwave, or back into a car trunk, because like dominoes, trigger points then get worse. Stretching exercise that increases pain may be trigger point trouble. Be picky about choosing your therapist.
Trigger points differ from ``tender points'' of fibromyalgia. A very good myofascial therapist can also help with fibromyalgia.
When all else fails and as a last resort, some people get regular hypodermic injections behind their ear for tinnitus or headaches. See the Davies' book for a discussion.
4.] My myofascial therapist suggested I see an atlas orthogonal chiropractor, as my right foot was one full inch shorter than my left! I thought, ``That can't be good.''
I was very much helped by a special doctor with love in her heart. She uses a relatively new therapy, a high-tech one, which I think we're all going to hear more about. She uses a percussion wave to make gentle, major chiropractic adjustments at C1 and C2.
For a year-and-a-half I'd been shuffling along with my head hanging out to the right and down (and dragging along my right-side severe muscle pain.) It hurt, was disgusting and frustrating. My head was out of alignment with my spine. I just knew my head wasn't screwed on right!
One of the causes is muscle atrophy. In my case, the muscles couldn't hold the head in place. Lyme certainly can cause muscle atrophy.
Lie flat on a bed, shoes on or off and have someone check: if a leg is shorter even by a little--see an atlas orthogonal therapist, for proper assessment. For the list of doctors see www.atlasorthogonality.com.
Regular chiropractors may help you--some may make it worse. Every time you have a conventional chiropractic adjustment, you're joints are damaged a bit.
Lying on a table, my special chiropractor moved my head a particular way according to what x-rays showed and did the quick percussion wave treatment, realigning my head. She helped me sit up.
I put two "even" feet to the floor--and was stunned. Silence ... Silence! I'd forgotten the sound of silence.
I went back and forth between my myofascial therapist who also ``worked'' my atrophied muscles and the atlas orthogonist, who sometimes needed to realign my head, followed by lying on her roller table to help adjust my entire spine. It's feels like being on a ship at sea, rolling with big waves.
Now I walk upright, balanced. This helped everything. Untreated, this condition can cause pain, stress, frustration, digestive problems, a weakened immune system, and more.
Your local atlas orthogonal chiropractor may provide a dandy referral to a good myofascial therapist.
All of these methods brought true healing, before Lyme treatment. I still had tinnitus at night.
Books I've mentioned may be found at public libraries.
5.] Tinnitus is a symptom of Lyme disease. My hearing also wavered for a year. A year and seven months after the BAM of Bell's palsy caused by Lyme, I had my Eureka! moment, realizing I had chronic Lyme.
Now, after a year of prolonged, high dose, multiple Lyme antibiotics (and more to come) and often the accompanying tinnitus at night and when in herx I can't remember the last time I had ringing between my ears. At all. Thank goodness!
On the Internet are many references to tinnitus, most being metabolic mayhem always present in disease, as is inflammation.
Whether you've been able to win your fight for getting prolonged antibiotics, or not--so far--I encourage you to tend also to optimizing conditions you have as a result of Lyme, or had before you got Lyme, for one thing, to help your tinnitus.
For example, is your GI tract humming along or hurting? What can be done to better it? Perhaps a gastroenterologist could help. Surf the Internet and check library and bookstore shelves. This could also help with metabolic mayhem.
Tinnitus can be an accumulation of causes. You could discover other trouble you never had a name for! Caring for those conditions optimally improves Lyme and coinfection recovery.
Here are other causes of tinnitus: wax/dirt build up in the ear canal (use off-the-shelf liquid remedies; some of us need to see an ear, nose and throat doctor for cleaning, regularly,) ear or sinus infections, allergic reactions, specific foods rich in salicylates, aspartame, too much caffeine, noise exposure, noise-induced hearing loss, and meds interfering with other meds (check the pharmacy information.)
Maybe you have vascular anomalies (a pulsing sound; pulsatile tinnitus; pulsatile tinnitus due to Lyme) high blood cholesterol, intracranial hypertension, head injuries, dental procedures, mercury fillings, lead poisoning, or TMJ (Temporo-Mandibular Joint.)
Some drugs can cause it: Aleve, Ibuprofen, aspirin, antidepressants, quinine, oral contraceptives, vancomycin, zithromax, erythromycin (this begs the question: clarithromycin?)
Also, B12 deficiency (relieved with shots of B12,) any neurological infections, potentially any metabolic disorders, autoimmune diseases, chemotherapy and more. Hyperacusis information may help.
Also, structural defects of the inner ear or from the ear to the brain may cause noise. Tinnitus can accompany ostosclerosis, Meniere's syndrome, auditory nerve lesions and growths/tumors.
Tinnitus can accompany Lyme hearing loss, Lyme sound sensitivity and Lyme stress (for instance, being sensitive to the noise of hearing more than one conversation at a time and having difficulty with Lyme multitasking to understand what's being said--is stressful.)
Bell's palsy, Lyme encephalopathy and fibromyalgia can cause tinnitus. Your awareness of your tinnitus can be stress-related.
Having a herxheimer can make tinnitus worse or exacerbate it.
Many of us have to fight for Lyme treatment, housing and more, causing more stress. When no doctor cared, I did what I could to care for myself and to search for other causes. That brought less stress because I was helping myself.
Reducing stress helps in a big way. For example, I drew a line in the sand by telling everybody what's going on inside my head, in no uncertain terms, and how they can help. Taking nice Lyme naps helped. Pacing myself with regards to the "balance" in my energy bank helped.
Stay on the path of finding your own answers, no matter how hideous our disease is.
All discussions in this column are for information only and should not be interpreted as medical or other professional advice. Each person is unique and all readers should carefully consider their own personal situation before pursuing any course of action.
posted
Just want to add to this thread...if any of you have Tinnitus and you are on Zithromax, that blatantly causes ringing in the ears. Many cases of tinnitus are from medications, so don't assume everything is a Lyme symptom.
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I'm glad this was made a sticky. I went off the zith and the ear ringing has reduced dramatically, to the point where I'm not sure if what I have now is something I've always had and just ignored, or if it's a low-level lyme symptom.
But going off the zith made a huge difference. I can't see myself ever taking it again.
Posts: 237 | From Rhode Island | Registered: Jan 2008
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In my personal experience it wasn't medication or Lyme........ just make sure you have all the appropriate tests to rule out..... at least have a MRI done...... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Cass A
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posted
Dear Daise and Kebbler,
I am SOOOOO very happy to have this data all in one place!!
For me, Tinnitus was the persisting problem that eventually led me to a Lyme test and diagnosis.
Recently, I have been taking a proprietary mix of herbs for Babesia AND Lumbrokinase, and my tinnitus is getting less!! I had taken several systemic enzimes before this without such a dramatic effect.
I'm taking Zithromax also, which has never made my tinnitus worse. Unfortunately, Doxycycline did worsen it, but that has now completely reverted.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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bettyg
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daise, be sure to copy your link here to TREEPATROL'S archive for newbies if you hadn't already my friend!
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Cass A
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Dear Keebler,
I am keeping a log of all symptoms on a daily basis now, so I'll be able to tell what's helped with what.
I've been doing the log for about 1 1/2 years, but the early entries were much more general than they have been for the last year.
As for the proprietary herbs, they are Byron White's formulas, and I have no idea at all what is in them. I'll ask.
I THINK that it is more the Lumbrokinase than anything else, but that is just my opinion.
I've been taking the Byron White babesia herb formula and the lumbrokinase for several months, and just re-started Zith this week.
I did get some decrease in tinnitus earlier while taking the Buhner herbs and then some lessening when I was doing a homeopathic babesia treatment.
However, currently, I am having a pretty continual decrease in tinnitus on a daily or weekly basis. Sometimes, I actually stop noticing it at all for brief periods of time!
And, I had a dramatic hearing loss while taking Doxy that has now completely reverted.
I do take Magnesium citrate daily, and have for many years. I stopped taking it while on Doxy in December for some reason--this was probably a mistake.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Cheryl
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Keebler
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posted
- GINGER CAPSULES help tremendously to help alleviate vertigo and nausea.
Remember GINGER, always. Tea may help but can also be spicy hot for some. The capsules have the best therapeutic dose and don't have the spicy factor for tender mouths.
ANTIVERTIGINOUS ACTION OF VITAMIN B-6 ON EXPERIMENTAL MINOCYCLINE-INDUCED VERTIGO IN MAN
Claussen CF, Claussen E. Neurootologie, Universit�ts-HNO-Klinik W�rzburg.
By means of a former investigation it has been proved equilibriometrically that the application of 7 X 100 mg minocycline may induce a central equilibrium dysregulation of the brainstem type.
It was the purpose of this study to further assure that the minocycline induced brainstem vertigo is due to a destabilization of a supervisory gamma-aminobutyric acid (GABA)ergic loop from the archeocerebellum upon the pontomedullary vestibular regulating pathways.
As it is pharmacologically known that pyridoxine is essential for the synthesis of GABA, an inhibitory CNS neurotransmitter, (2)
2 separate double blind trials on 20 healthy young persons each were carried out after the intake of 7 X 100 mg minocycline during 3 days with and without 7 X 40 mg pyridoxine simultaneously.
These trials were checked against an additional placebo or initial non drug investigation. In all the 40 test persons it could be proved that the amount of vertigo and nausea symptoms was increased significantly due to the application of minocycline only.
However, when combining minocycline with vitamin B 6, the vertigo and nausea symptoms as well as the nystagmus signs from the monaural and the binaural vestibular ocular tests as well as (the)
the vestibular spinal signs from the craniocorpography recordings of the stepping and the standing procedures were remarkably reduced. . . .
. . . The same holds for the vestibular vegetative reactions, measured by the simultaneous electrocardiography during the vestibular tests.
All the equilibriometric tests applied showed a significant destabilization under the influence of a pure minocycline loading. -
[ 04-22-2010, 02:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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In my personal experience it wasn't medication or Lyme........ just make sure you have all the appropriate tests to rule out..... at least have a MRI done...... mtree *************************************************
I wanted to repeat that, because the same is true for me(at least partially).
carly
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Keebler
Honored Contributor (25K+ posts)
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- as sometimes, inner ear conditions can have other causes, this is a new article to consider:
Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia - An Opinion - by Patient Advocate James Kepner
ImmuneSupport.com - 04-23-2007 -
[ 04-22-2010, 02:13 PM: Message edited by: Keebler ]
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Keebler
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posted
From what I read, it may be that Turmeric, and it's stronger componet, Curcumin, might offer some help to decrease tinnitus and hyperacusis as in both detox and to lower the excitatory NMDA receptors.
Brain Res. 2008 May 19;1210:84-91. Epub 2008 Apr 16. Links
Curcumin protects against glutamate excitotoxicity in rat cerebral cortical neurons by increasing brain-derived neurotrophic factor level and activating TrkB.
Wang R, Li YB, Li YH, Xu Y, Wu HL, Li XJ.
Department of Pharmacology, School of Basic Medical Sciences and State Key Laboratory of Natural and Biomimetic Drugs, Peking University, Beijing 100083, PR China.
Curcumin is a major active component isolated from Curcuma longa. Previously, we have reported its significant antidepressant effect. However, the mechanisms underlying the antidepressant effects are still obscure.
In the present study, we explored the effect of curcumin against glutamate excitotoxicity, mainly focusing on the neuroprotective effects of curcumin on the expression of Brain-Derived Neurotrophic Factor (BDNF), which is deeply involved in the etiology and treatment of depression.
Exposure of rat cortical neurons to 10 muM glutamate for 24 h caused a significant decrease in BDNF level, accompanied with reduced cell viability and enhanced cell apoptosis.
. . .
Taken together, these results suggest that the neuroprotective effect of curcumin might be mediated via BDNF/TrkB signaling pathway.
Neuroscience. 2008 Mar 15. [Epub ahead of print] Links
Hormones and the auditory system: A review of physiology and pathophysiology.
Al-Mana D, Ceranic B, Djahanbakhch O, Luxon LM.
Department of Neuro-Otology, The National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG, UK;
Academic Unit of Audiological Medicine, University College London, Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK.
This review explores the potential role of hormones in modulating the auditory function.
The review describes four groups of hormones (the hormones of the circadian cycle, reproduction, stress response and the fluid and electrolyte balance), their physiological variations, interactions, as well as the physiological basis for their effect on the auditory system.
Possible contribution of hormones to pathophysiology of auditory dysfunctions, including hyperacusis, tinnitus, Meni�re's disease and pre-menstrual auditory dysfunction, has also been discussed.
PMID: 18440718 [PubMed - as supplied by publisher]
The NBC News article below features the EPLEY MANEUVER, a technique for prompt clearing of benign paroxysmal positional vertigo -- BPPV -- a common cause of severe dizziness.
Note: not all dizziness is BPPV. A special exam can determine if it is BPPV or offer further assistance in diagnosis and treatment if it is not. The Epley maneuver will not resolve other causes of dizziness.
It's great to see this sort of thing in the news, especially since doctors are not taught this in medical school.
The article seems accurate, however, Dr. Epley who developed the maneuver, is a neurotologist. The article refers to him as an otologist.
- New guideline says simplest treatment for vertigo is also the best -
By JoNel Aleccia - Health writer -updated 5:33 a.m. PT, Wed., May. 28, 2008
The next time the world starts spinning, Larry Janisch will know exactly how to make it stop.
But two months ago, when the 50-year-old Phoenix man woke up one Saturday reeling from vertigo, he had no idea what to do.
``I felt like I was drunk,'' he said. ``I couldn't stand up. I kept falling over.''
Fortunately for Janisch, he works at a hospital where a vestibular therapist, a specialist in inner ear disorders, is almost always available.
Within 10 minutes of walking into the lab at Banner Good Samaritan Medical Center, Janisch was better, thanks to a simple technique that neurology experts have verified as the best way to treat benign paroxysmal positional vertigo -- BPPV -- a common cause of severe dizziness.
A series of gentle head and neck movements known as the canalith repositioning procedure is the fastest, easiest way to cure BPPV, according to a new guideline developed by the American Academy of Neurology.
About 3 million new patients a year in the United States are diagnosed with the problem characterized by dizziness, lightheadedness, imbalance and nausea that can last for days -- or even months.
Traditional treatments have ranged widely, from drastic measures such as sedatives to nerve surgery to nothing at all.
``Instead of telling patients to `wait it out' or having them take drugs, we can perform a safe and quick treatment that is immediate and effective,'' said Dr. Terry D. Fife, an assistant professor of clinical neurology at the University of Arizona, who led the study presented in the latest issue of the academy's journal.
``No special chair is needed, no goggles are needed, no special device is needed, just the hands -- and the knowledge,'' added Fife, who also directs the Balance Center at the Barrow Neurological Institute.
Tiny crystals lodge in sensing tubes. BPPV is caused when tiny calcium carbonate crystals in the inner ear dislodge and land in the sensing tubes that detect motion and gravity.
When sufferers move their heads, those ``ear rocks'' cause severe sensations of spinning or whirling.
``It's bad,'' recalled Janisch, a physical therapist.
The condition is typically caused by head injury in people younger than 50. It's far more common in older people, however, as aging causes degeneration in the structures of the inner ear.
The canalith repositioning procedure works by moving the calcium crystals out of the sensing tubes and into another chamber of the inner ear, where they're safely reabsorbed.
Fife and his team reviewed 40 years of research on treatment of BPPV, including 925 articles published from 1966 to 2006, to provide the first evidence-based recommendation for treatment of BPPV.
Final analysis showed that the procedure, also known as the Epley maneuver , should be offered to BPPV patients of all ages, he said.
A second, more vigorous, technique, known as the Semont maneuver, is also possibly effective, but there's not enough evidence to say for sure, Fife said.
While the new guideline is gratifying, the Portland, Ore., otologist who came up with the Epley maneuver nearly 30 years ago wondered what took the AAN so long.
``I think it's about time,'' said Dr. John Epley, 78.
Epley's technique involves positioning a patient on his back, with his head hanging slightly over the edge of a bed or table and tilted 45 degrees toward the affected ear.
Then the patient's head is moved into a series of four positions until it is rotated 90 degrees toward the other ear.
Technique cures vertigo in most patients_The maneuver, which resolves vertigo in about 80 percent to 90 percent of patients, is widely used, but only among doctors who know about it, Fife said.
The technique is not taught in medical schools and most general practice doctors may have heard only rumors of a quick, easy way to treat vertigo.
``I think for physicians, the new thing is the evidence-based status,'' said Fife, who hopes the guideline will encourage more doctors to use the method.
Besides, Epley's technique has been controversial. In the early years, he was ridiculed by colleagues for suggesting that such a simple treatment could have profound effects on vertigo. ``Everyone thought it was crazy,'' Epley said.
More recently, there's been debate over which of several repositioning techniques works best. European doctors, for instance, seem to favor the Semont maneuver, Fife said.
Others prefer techniques such as the Brandt-Daroff maneuver, one of several alternatives aimed at shifting the calcium crystals.
Even Epley has tried to improve on the physical technique with a device called the Omniax chair, which holds patients in place while it rotates them 360 degrees.
Epley received research funding from the National Institutes of Health to study the chair and he expects federal Food and Drug Administration approval of the device soon.
The chair is useful for the small percentage of patients who can't be cured with the regular maneuver, as well as those too large, too old or too frail to be perched on a bed or table, Epley said.
For Michelle Soper, 37, an elementary school secretary in Banks, Ore., one treatment in the Omniax chair in March appears to have cured bouts of recurrent BPPV.
``I would go to roll over in bed and my whole room would spin. I'd look up, it would spin. I'd look down, it would spin,'' she said. ``After the chair, it was unbelievable.''
Home treatment a possibility_But Fife and Epley agree that most BPPV patients don't need the chair. They only need a few minutes with a doctor or therapist trained in the maneuver.
With practice, some patients can even learn to perform the Epley maneuver on themselves, Fife said.
Although BPPV will resolve on its own in up to half of patients, the new guideline could make the difference between enduring months of life-altering dizziness -- or only a few days.
``We hope more people will see there is some value in treating symptoms sooner rather than later,'' Fife said.
-------------------
MSN Privacy . Legal� 2008 MSNBC.com -
[ 02-13-2010, 01:49 PM: Message edited by: Keebler ]
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Keebler
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- Re: confusion about ototoxic lists, why some doctors use a drug on the lists and others don't. =====================================
* A retired professor of pharmacology told me a couple years ago that minocycline destroys the inner hair ear cells.
* My local pharmacist says she never heard of anyone having trouble from it.
Uh . . . .
in reply to someone from another tread & others who may wonder - this might help explain why doctors don't have one general list to check for ototoxic, ototoxicity in drugs.
Researchers seem to differ on mino. One doctor may be very firm in not using minocycline or zithromax while another may have those on the front line.
It is confusing that a drug can be on one ototoxic or vestibulur toxic list but not on another. I usually check four lists/books and try to get the most current ones.
The way ototoxic reactions are reported is not like you'd think.
If a patient has a problem and reports it it might be recorded in a record somewhere as either vertigo, dizziness, tinnitus, hyperacusis, or hearing loss.
Only ear hair cells are destroyed might the drug be listed as ototoxic but some researchers connect any troublesome audiological symptoms as degrees of ototoxicity - some reversible, some not.
The degree or length of time these continue are not recorded. That would help. Also, blood levels are not usually helpful in reporting of ear reactions.
I had a conversation with a retired professor of pharmacology and he told me that minocycline destroys the hair cells. I've not found that in print. However, I don't have resources to buy a lot of books or even purchase full journal articles over the web. I have found that it can clearly be toxic to the balance system, so if that's because of ear hair cells or another reason, I'm not sure.
I also have to wonder if some patients are, for some reason, more affected than others. And, herx can be part of it.
The B6 / mino article ( http://tinyurl.com/3xpvck ) is from Germany. It might not have appeared in American medical journals.
Also, mino is being tested in some studies to prevent hearing loss with the inner ear injections of a very ototoxic drug, gentamicin, in a study with mice. So, that is very curious. But they add yet a third substance and that may matter tremendously in the outcome. PubMed, in general, does not have a lot of abstracts with ototoxic drugs that appear on lists elsewhere.
Ms. Suss points out that the Physicians Desk Reference (PDR) did not list ototoxic drugs until the 1989 and later editions.
She refers to a separate document, Drug Interactions and Side Effects Index, which is keyed to the PDR.
She then points out that the Index is incomplete: several problem drugs are not listed there.
======================
I'm not a researcher or an expert, just trying to make sense of what I've read. Hope it's not overwhelming. Wish it were clearer. And I wish I could be more concise.
The bottom line that one my otologists told me to remember is that any drug that trigger tinnitus, vertigo or hyperacusis can be ototoxic for my ears. He said to stop immediately so the chance to reverse that is better.
Still, many lyme patients report certain abx triggering tinnitus that clears once the lyme clears. It could be they were taking another substance that helped prevent damage or, for some reason they were not as affected in the ears as others.
We still have so much to learn about all of this. In the meantime, it's just wise to be aware of potential risks and alternatives to either add or substitute.
However, NOT treating damaging infections because of potential side effects of drugs is simply NOT an option. It is possible to find the correct treatment (s) that will address infections and ear safety.
Otologists, neurotologists, ENTs are the doctors of the ears. It's good to see them for any ear trouble - also because it's not always from lyme (babesia, other TBI bother ears) and there are also other sorts of conditions that can affect ears/balance.
Always ask a specialist if there is a concern. Our ears, our balance affects nearly everything we do in life, in relationships. If the balance is off, life itself is off balance.
-
[ 04. September 2008, 03:10 AM: Message edited by: Keebler ]
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shazdancer
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Hi Keebler,
I checked PubMed, the National Libraries of Medicine portal, the Healia search engine, the NOAH search engine, and the American Hearing Research Foundation, and got nothing on the ototoxicity of minocycline. There was one pig study in 1975 that did not see ototoxicity.
I did find one source -- the Family Practice Notebook , which lists minocycline as causing "transient vestibular toxicity" only.
I also got some interesting links on balance issues on the American Hearing Foundation website that might interest you. Syphilis is listed as a cause of inner ear trouble.
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Your dedication to presenting us with this information is really appreciated.
You make it easy to find what we need through your knowledge & research.
carly
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Keebler
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posted
- Shaz Dancer, Thanks.
Cleary some say yes and some say no. I do think the manner of reporting matters and if they don't do a study, individual reports often go undocumented.
I interviewed a retired pharmacist who said they he did research on minocycline and found it clearly to be ototoxic. But, some people do better than others. And LIVER SUPPORT can make all the difference.
When I Google "minocycline, ototoxic" or "minocycline, ototoxicity" - while way too much unspecific stuff pops up, some relevant sites have information that does not make it into the two main medical journals.
But "minocycline, vestibular" is where more problems are found. A substance can be found not ototoxic if it does not cause deafness outright and they don't see if it has toxic effects on the rest of the vestibular system.
Vertigo and dizziness often are categorized as side-effects, where some researchers are now saying that it goes beyond that at times.
I'd love to know any differences in those who don't seem to be bothered by mino vs. those who are clobbered by it. And, is it enough to B6 that some researchers are studying? Finding follow-ups is tricky.
Everyone should know that extra ear protection is needed during any abx as noise damage can happen at lower decibels then usual.
====
Carly,
thanks for the compliment. Well, I live with ears and startle reactions that keep me apart from people, so I have to learn all this. And, preventing damage to ears for others is so important.
Still, I'd rather be swimming ! Today, I'll imagine a beach in the Caribbean. Ahhhhh.
=====================
Questions about ototoxicity or vestibular toxicity? FIRST - and LAST:
Cross search medicine with Neil G. Bauman. He is an expert on ototoxic drugs.
Also, cross search to be sure it is not a drug that uses the Cytochrome P-450 liver detox pathway as than can result in excess porphyrins.
Even if a drug (technically) is not ototoxic, if it is a drug that induces any kind of porphyria, it can be very toxic to all cells in the body, especially ear and nerve cells.
Google The American Porphyria Association for more details.
Also search "Secondary Porphyria" and "Chronic Porphyria" - most lyme patients are affected due to liver stress.
==================
All 3 of these books can be found through AMAZON:
* Ototoxic Drugs Exposed: Prescription Drugs and Other Chemicals That Can (and Do) Damage Our Ears - Neil G. Bauman
* Ototoxicity by Peter S. Roland
* Pharmacology and Ototoxicity for Audiologists by Kathleen C. M. Campbell -
[ 04-25-2010, 02:54 AM: Message edited by: Keebler ]
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Keebler
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- This thread on vertigo -
NOTE: the use of the term "post TBI" - in this article does not refer to tick-borne infection but, rather, to post traumatic brain injury. TBI is used often for that brain condition, so I will no longer use it for tick stuff, but instead use TBD, tick-borne disease.
The author offers information on testing for different causes of vertigo.
Dear IBIA, I have often dealt with post-TBI patients who complain of dizziness. A patient of mine was recently given a diagnosis of "post traumatic perilymphatic fistula".
I have never heard of this condition and cannot find much information on it, although I may be looking in the wrong places.
Please inform me, as well as, other readers, about this condition. Also any information on dizziness in our clients with TBI would be appreciated.
D.L., British Columbia, Canada
IBIA Responds
- response at the link -
[ 04-25-2010, 02:59 AM: Message edited by: Keebler ]
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Keebler
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Antimicrob Agents Chemother. 1975 October; 8(4): 453-456 Copyright � 1975 American Society for Microbiology.
Vestibular Reactions Associated with Minocycline Jay A. Jacobson* and Brenda Daniel
* Bureau of Epidemiology, Center for Disease Control, Atlanta, Georgia 30333_Doctors Hospital, Tucker, Georgia 30084
ABSTRACT
Several recent reports have indicated that minocycline, a drug effective for meningococcal disease prophylaxis, is associated with a high incidence of vestibular side effects.
In January 1975, a questionnaire on adverse reactions was completed by all 29 staff members of a North Georgia hospital who had taken minocycline at the recommended dosage after exposure to a suspected meningococcal meningitis case and by 25 age-, sex-, and occupation-matched non-treated controls.
In the treated group 86% experienced moderate to severe vestibular symptoms; 84% of the symptomatic persons experienced their onset after one or two doses of 100 mg.
Fifty-two percent of the treated staff members stopped taking the medication because of these effects.
The symptoms resolved within 48 h after affected persons discontinued the medication.
Until the safety of minocycline can be reestablished, rifampin is recommended for meningococcal disease prophylaxis, and alternative drugs are encouraged for other indications.
Antimicrob Agents Chemother. 1975 October; 8(4): 453-456 Copyright � 1975 American Society for Microbiology. All Rights Reserved.
Objective: To compare the efficacy and tolerability of minocycline versus doxycycline in the treatment of nongonococcal urethritis and mucopurulent cervicitis.
Patients: 151 men and 102 women with nongonococcal urethritis, mucopurulent cervicitis or whose sexual partner had either condition or a positive culture for Chlamydia trachomatis.
Interventions: Minocycline, 100 mg nightly, or doxycycline, 100 mg twice daily, each administered for 7 days.
Vestibular toxicity is by far the most common significant adverse reaction reported for minocycline.
In our study, patients receiving doxycycline experienced significantly more adverse drug reactions than did those who were randomized to receive minocycline.
Although 30% of patients receiving minocycline, 100 mg at bedtime, did report adverse drug reactions, almost all were related to gastrointestinal upset and were mild.
Only four women reported mild vestibular toxicity.
We therefore think that the administration of a single 100-mg capsule of minocycline at bedtime largely overcomes the vestibular toxicity historically associated with this drug. . . .
- full article at link above.
Note: this was for a treatment of 7 days. -
[ 04-25-2010, 02:56 AM: Message edited by: Keebler ]
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lymeHerx001
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I still dont know if one can have ototoxicity without tinnitus and hearing loss.
I have had chronic vertigo now for 4 years and it just keeps adding up.
What was the trigger?
Biaxin then a chemical exposure. I have it all the time but when my blood levels of biaxin get high it gets WORSE. So does my chemical sensitivities.
I was thinking impared cy450 enzyme. I also get this way with diflucan.
But the biaxin helps my pain and energy. Cant live with it and certainlly cant live without it.
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Keebler
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-
Yes, one can have ototoxity without hearing loss or tinnitus. Tinnitus is more frequent of a barometer, but separate is vestibular toxicity, independent of hearing.
And, yes, I think there may well be a connection to drugs that use the cytochrome P-450 liver detox pathway as, if that pathway is not working correctly or if a person has genetic or acquired porphyria . . . all of those can contribute to excess porphyrins that cause damage to cells in various places of the body, especially nerve cells.
Diflucan does metabolize using the C P-450 pathway, so that is a possible clue.
I don't know if Biaxin is a C P-450, but I recall some reports of high tinnitus from those who have taken that. I get very loud tinnitus with Biaxin .
The vertigo is a puzzle.
In the meantime, I wonder if ginger might offset some of the symptoms. Beta carotene can lower porphyrins as can liver support herbs such as milk thistle and schizandra. Frequent small meals with some carbs. Fasting, a no or low carb diet can trigger porphryia in those with this.
www.immunesupport.com and www.cpnhelp.org have info on "secondary porphyria" - but I have to avoid the simple carbs they suggest. Beta carotene - natural, not synthetic, seems to help, but I'm far from out of the woods.
Also be aware that lyme and TBI (and especially a herx) can cause some of the same symptoms as porphyria. It's tricky to sort it all out. A few doctors wonder if the herx is a sign of porphyrins and suggest backing off or trading meds.
I think that if some protective measures are taken that meds can be more easily tolerated.
Sorry, it's so complex and still unclear. My hands are numb/ but painful, too, right now, so I have to stop here. Maybe others can shed some light.
One ear specialist told me that they can't test all the drugs and people have different tolerances. He said that if I get strong ear or vestibular symptoms that I can connect with a drug, to stop it immediately and, with a doctor's help, find another way to achieve the goal. Sometimes, lowering the dose is all that is needed.
lymeHerx001
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posted
Well heres the deal. I would like to blame the doctor or even the drug but I have been getting episodes of vertigo ever since I was 19 and smoking cigarettes.
I quit the cigarretes the next year but then would start to get vertigo from mold. Very bad vertigo that I would wake up crying and everything was spinning.
I would get this for the longest a week maybee two weeks tops and then it would go away. Homeopathy helped this at the time.
Now its chronic and I have tried everything. Accupuncture, herbs, etc.
I once asked an ENT if he could do surgery and he said NO.
I guess im out of luck, but I still hope that one day it just stops for no reason. That would be a blessing.
Life with chronic vertigo is not fun.
I cant fold my hands anymore or even touch skin to skin. My arms and hands feel like they are in back of my body when I do this. Its very disoreantating.
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Keebler
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[ 12-14-2009, 12:59 AM: Message edited by: Keebler ]
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lymeHerx001
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posted
Thanks for the encouragement Keebler. It seems only those who go through this would only know enoght pain that it causes to comment on it.
I know myself that If I were free from vertigo and chemicals bothing my sinuses, I would not go NEAR this topic.
To scarry and I would be asking for trouble.
But now that Im in it, I cant stop talking about it. I almost feel that I want to beceom an ENT or some sorta doctor so I can explain what exactlly is going wrong.
I have a feeling though that I would need to study neuroscience also. There could be something weak in the cerebellum that agravating this.
Besides the point, the closest other diesease that comes close to this is "Empty Nose Syndrome."
This is where people have their turbinates removed or lessened due to infections or another reason. It makes their nose very dry and makes them super sensitive to smells along with a reduced ability to smell.
Its really messed up!!!!!!!!!!!!!!!
I used to LOVE my nose and smelling perfume and cologne. I LOVED IT. Now it all smells like amonia, not to mention the chronic vertigo where I feel like Im falling over.
If I had a million, I would give a million away to anyone who could begin to treat me for this.
This is no easy life and certainlly no easy path. It seems to be getting worse and worse.
"just keep taking the Biaxin" my LLMD says. "For how long" I ask "Maybe for the rest of this life and the rest of the next life too."
Yea right!!!!!!!!!!!!!!!
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lymeHerx001
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Up again? Daise are you suffering?
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Keebler
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- Bless her heart, I think Daise just wants to be sure that, with so many new posters here, some questions can be answered before they even have to be asked.
If people see this up front, it can save a lot of time and cut to the chase about vestibular symptoms. -
[ 02-13-2010, 01:55 PM: Message edited by: Keebler ]
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shazdancer
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Oh, add one more thing to the otological mix... cochlear amusia.
I noticed that I hear slightly different pitches out of each ear. I have always had a pretty good sense of pitch, and noticed one day that the dial tone on my phone seemed different. Switching ears, I found that one ear heard the tone a half-tone higher than the other ear.
I just picked up Oliver Sacks' newest book, Musicophilia. In Chapter 10, he describes a composer who was having increasing difficulty hearing the proper pitch, which was interfering with his ability to hear his own compositions correctly when they were being played.
Although this hasn't been studied much, Sacks described the problem as being perhaps a combination of problems in the inner and outer hairs of the cochlea, and in the perception centers of the brain.
One author noted its description in patients with Meniere's disease, a diagnosis that comes up in Lyme patients at times.
Perhaps in the future this will help researchers to know where to look for brain damage due to Lyme, since some 15% of those with severe Lyme wind up with hearing impairment.
Regards, Shaz
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daise
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posted
Hi Lymeherx101,
This used to be a red-flagged sticky, but it got demoted.
Keebler's heart pours out information that is invaluable to hurting people who are trying to help themselves.
Keebler
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posted
- Daise, Gracias.
Shazdancer, fascinating. I love Oliver Sacks' work. I will have to get that book. Thanks so much for the post. Very interesting.
on another note: -------------
I've been working on compiling information on SCD for a while and finally got it together.
In case this helps anyone else - many have gone for years never knowing this had a name.
In my research, I have found one or two references to lyme being one possible cause of, of connection to, this, although it is most likely congential and, if present, just does not usually show up until adulthood. Trauma, too, can bring it out.
If lyme (or other infections) are eating away at bone, of course, until the underlying cause is addressed surgery would be a stop-gap - or relief time and less stress on the body so healing from lyme could really happen.
Some patients (as in the video) do quite well with surgery. Others take longer to heal and vertigo can be further challenged.
There are many surgeons in the country / world who do this, but it's only been identified since 1995 and the main research and surgical team is at Johns Hopkins. From what I've read, they are quite impressive and have had zero cases of deafness from the (approx. 70) surgeries performed there.
Adrian McLeish's Rare Condition Led to Amplified Sounds Produced From Eye Movement, Chewing and More
By ALEXA DANNER - March 12, 2008
Imagine if every sound you heard reverberated right through your brain. . . amplified and distorted, echoing through [his] skull. . . The sound of his own chewing was maddening.
. . .McLeish described the reverberations of his voice as sounding like a cracked loudspeaker or "like somebody humming through a kazoo."
- FULL ARTICLE AT LINK above.
======================================
(Yes, while Johns Hopkins is awful regarding lyme they are excellent with this ear condition with diagnostics and surgery)
SCDS Patient support forum -- See the pages for LINKS - many wonderful medical articles.
======================================
While SCD may include hyperacusis (HA), it has a defintion and symptoms beyond that. Hyperacusis can have many causes, but lyme is certainly one of those. Many SCD patients have hyperacusis but only a few hyperacusis patients have SCD.
Many patients with lyme who experienced hyperacusis (or sound-triggered seizures) found that successful treatment ofr lyme / TBD either diminished or eliminated this horrible symptom.
THE HYPERACUSIS NETWORK (caution: top portion of this web page is a roll of photos, very dizzying)
-------
A page on Adrenal Support would be welcome here as anyone with sound sensitivity (or stress from any stimuli) can get pretty crispy around the edges, so to speak.
Ashwagandha is my favorite that seems to work for everyone but there are many more.
Magnesium helps me tremendously (with attention to B-vitamins, and fish oil, too).
Not all hyperacusis comes directly from the ears. If it's from the brain or nervous system being too excited or over-stimulated, toxins can be to blame. Excesss porphryins, too, can be toxic to the ears and create all sorts of sensitivities.
Liver support and, again, magnesium can help there. Good sleep is vital.
The post - 2 above - by Shazdancer, with the link to the perception centers - helps explain a lot. I found it amusing that this article was published on July 4th (last week!). Not the best day of the year for ears! -
[ 02-13-2010, 01:54 PM: Message edited by: Keebler ]
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lymeHerx001
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Daise I read this wrong as an attack on Keebler. You meant that her posts are invauble to people who are suffering, not to huring or harming people.
Whew, glad I figured out what you meant. Yes I am suffering and many others.
God bless.
quote:Originally posted by daise: Hi Lymeherx101,
This used to be a red-flagged sticky, but it got demoted.
Keebler's heart pours out information that is invaluable to hurting people who are trying to help themselves.
So I keep floating it to the top!
daise [/QB]
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Keebler
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K�nig O, Winter E, Fuchs J, Haupt H, Mazurek B, Weber N, Gross J.
Department of Otorhinolaryngology, Charit� Hospital, Humboldt University, Schumannstrasse 20-21, 10117 Berlin, Germany.
Protective effect of magnesium and MK 801 on hypoxia-induced hair cell loss in new-born rat cochlea.
Excerpts:
Hypoxia is a pathogenetic factor in various inner ear diseases, and increasing importance is attached to the protection of the cochlea from traumatic influences. It was recently demonstrated in guinea pigs that magnesium can significantly reduce ischemia- and impulse noise-induced hearing loss. . . .
This study supports previous in vivo observations in the guinea pig demonstrating the protective effects of magnesium on noise-induced impairment of inner ear oxygenation.
(Thanks to Parisa for posting this link at another thread - it lead me to explore the importance of gluten consumption - or not - before certain tests.)
. . . Q: Do I have to be eating gluten for a gluten antibody test to be positive?
Because production of antigliadin antibodies is under genetic control, your body continues to make these antibodies for an extended period after gluten is removed from the diet, albeit, in lesser quantities the longer gluten is removed from the diet.
Research has shown that these antibodies continue to be produced at lower levels for months, even 1-2 years after gluten is removed from the diet.
Stool tests can continue to detect these low levels of antigliadin antibody produced in the intestine over this 1-2 year period (and longer if there is still small amounts of gluten in the diet, even hidden gluten); tests for antigliadin antibody in the blood routinely become negative after 3-6 months on a gluten-free diet. . . .
Q: If I am already on a gluten-free diet, do I have to return to eating gluten to be accurately tested for gluten sensitivity using the stool test?
- Cont'd at link above. -
[ 04-22-2010, 02:16 PM: Message edited by: Keebler ]
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Keebler
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- Short discussion of intensified symptoms from migraines and inner ear problems for some living near wind farms.
. . . 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 ]
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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
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- 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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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
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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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- 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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posted
- 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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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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
Honored Contributor (25K+ posts)
Member # 12673
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)
Member # 15117
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
Frequent Contributor (1K+ posts)
Member # 17189
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)
Member # 15117
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.
Frequent Contributor (1K+ posts)
Member # 9121
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)
Member # 17189
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
Honored Contributor (25K+ posts)
Member # 12673
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)
Member # 12673
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.
Posts: 62 | From U.S. | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. ---------------------
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