I'm sorry you have this symptom, it would drive me crazy too. Hopefully more people with this symptom will respond later or tomorrow to tell you their stories.

I am WITH you on this one! Tinnitus was my very first symptom (noticed it even before I noticed I had the rash), and has absolutely been the most consistent. In the past 10 months, I have had one day that I thought, "hey, the ringing is almost gone." But it didn't last.

I'm currently on IV Rocephin (starting my 7th week). My doc was hopeful that would do the trick, but so far it hasn't affected my ears (although I'm seeing some other improvements).

Having posted similar questions, people have told me that it WILL go away, but that it takes a long time. I often wonder, though, whether others really have the level of tinnitus I do! It is so agitating!

Let me ask you this - - does your tinnitus feel "electric?" Mine feels like it's part of a current that runs through the middle of my brain. I always feel "wired" and it has led to a lot of sleep problems. Can you relate?

I wish I had a success story to tell you. Hopefully we will both have stories to tell soon! In the meanwhile, I'm gratified to hear that I'm not the only one battling this!

Thanks for posting!

Jeff, you and I are so much alike with this symptom! Yes, I've had constant tinnitus, and it was one of the first and definitely most noticeable of all the symptoms! It started with weird sounds that would come and go, like soda fizz. Then one morning it was constant. I did have a couple of days last fall when I was on suprax and later suprax and biaxin when I had parts of a day (maybe an hour or two) when it became barely noticeable. I felt so encouraged. But, it kept coming back.

Before I started the antibiotics I had three sounds in my head. The wire sound in the middle of my head that you describe (although I hear it more in my left ear), a high pitch sound, and a pulsing sound (most prominent) in my left ear. That high pitch sound was gone but now it's back now and again. The pulsatile tinnitus goes back and forth with that wire sound in the middle of my head you describe. That's what it is like most of the time now. I think I'd rather have the left pulsatile back instead of this one. It feels like a high pitch drill, and yes, it makes me feel wired!

Once the tinnitus began, sleep became impossible. Like you, I wonder when people tell me that they have tinnitus if they have anything near the level I have. If they did, they wouldn't describe it so matter-of-factly! Hearing tests showed that on the days the tinnitus was bad, I had hearing loss. On a day when it wasn't so bad, I was in the normal range again. The sound is so aggravating it makes me want to scream! I've been taking Ativan for sleep. I know it's not great to take benzos on a regular basis, but from the literature I've read on tinnitus, it's the only thing that allows people with severe tinnitus to sleep. My doctor said, getting off of ativan eventually will be the least of your problems. Problem is it is easy to develop a tolerance and you need more of the drug. So far, I haven't, apparently because I don't take much and I only take it at night to sleep. When I was improving and the tinnitus was softer, I was able to start tapering off with no problem. Now though, I'm using it for sleep again. Without sleep, I can't function at all, so....

I also have lots of pressure in my head and ears, and pain in my ears at times. Plus, the left side of my face gets numb or twitches, and the vision in my left eye is blurred. Often, it hurts a lot around my left eye. All of these symptoms with the exception of the tinnitus pretty much went away when I was on suprax and suprax/biaxin.

I was left with tinnitus and fatigue as the most pronounced symptoms but had gone from bedridden to about 50% functioning. Then, I went on the IV rocephin being told it is the gold standard for these neurological symptoms. I was on it for 10 weeks but unfortunately I developed problems with my gall bladder and then became horrribly sick to my stomach. I still have bad GI problems and have had to take a break from antibiotics because of these problems for 6 weeks now. All of the neurological symptoms are back.

The good news I hope for you is that I met a woman in the waiting room who went on IV rocephin and told me that at the five month mark, she woke up with a huge change in her symptoms. She was rid of the tinnitus during the first five months of rocephin, and she was back to 99% functioning after 9 months on rocephin. She looked great! I hope you have the same luck with rocephin! I think it was helping with my tinnitus but unfortunately all of the other complications came up for me.

Let me know how you do. I'm glad to hear that when you posted before, people did say that the tinnitus eventually did go away. Do you remember what meds worked for any of them? How long?

Best wishes!

Sorry you are having so much trouble. A chiropractor was able to help me.. and now I only have it once or twice a year...

Also.. have you all been checked or treated for babesia?

And keep in mind.. Zithromax can cause this too... or make it worse.

Hope you get some relief soon!

Oh.. here is something you probably have seen.. but in case not...

http://www.ata.org/

Your success is the best news I've heard! Although I am new to Lymenet, I've read a lot of your posts, which have been very informative! Please tell me, how did a chiropractor help you? Do you recommend this while on the antibiotics for Lyme? What can a chiropractor do? How do I find one familiar with this problem? Did you go to the chiropractor after antibiotic treatments? I'm not on xithromax but am about to go back on biaxin and add flagyll. I was tested for babesia, and it was negative. Did any of the antibiotics help you with the tinnitus?

I, too, feel ready to jump off a cliff from this tinnitus. I will jump for joy if I can achieve one or two days a year with it!

Thanks for the link to ata. Interesting, May 13th is national tinnitus day!

Many many thanks!

Thanks and congratulations on your improvements! It must be such a relief. When you refer to the plaquenil combination, do you mean plaquenil/xithromax/amoxycillan? I keep seeing this combo on posts, yet it has never been raised as something for me. I guess biaxin is comprable to xithromax, flagyll to plaquenil? I developed an allergic reaction to amoxy now. Is plaquenil better than flagyll, fewer side effects? Biaxin vs. xithromax? Just wondering why docs choose one over the other. If your combination worked for you, I'll certainly ask my doc about it.

As far as I know zithromax is as good as biaxin. 500mg/day zithromax worked as well as 1000mg/day biaxin for me.

Zithromax has the advantage of havig a longer half life so you can occasionally miss a couple of days if need be.

Allergy to amoxy sounds like a problem. But many docs don't even seem to require it in combination with zithromax and plaquenil, though I relapsed when only taking zithro/plaquenil presumably because extracellular forms weren't being killed off. Maybe it's different for different people (many things with Lyme are that way).

Perhaps try another cell wall agent instead of amoxy. You need to be careful to pick something that will avoid stressing your liver, though. Don't try a high dose of ceftin; I took some along with the plaq/zithro/amoxy combination and ended up with mild liver damage for a few days.

To avoid liver stress, you could always go onto zithro/plaquenil for a few weeks to hammer the intracellular forms, then cut out the zithro/plaquenil and take lorabid or ceftin for a few weeks to kill extracellular forms, and so on in an alternating pattern for several months.

I am not that bothered by it, except when I am in a quiet room. Then I think someone's left a fridge in the room. For that reason, I often put music on and headphones. There are some nice sleep tapes with brain wave entrainment.

The theory is these pulsing sounds that match brain wave activity for various states are embedded in the music and it can help induce that state. The delta waves help induce sleep. Well, sometimes it helps.

But now that you all point it out, yes, the ringing is pretty annoying. Like an electrical cricket or cicada sitting just outside the head.

Poochini

This is from his handouts:

As Tincup posted, Dr. J said that Zithromax would make it worse.

Jordan is now on Flagyl ER and Colestid (to remove neurotoxins).

The ringing in the ear is much better. I'm thinking it may have been caused by neurotoxins.

He did mention yesterday that he had ringing in ear for awhile. But, it is much better.

``Magnesium May Shield Sensitive Ears

It's true that you won't find laboratory animals handling heavy artillery or using chain saws. But you can thank these creatures for another dietary recommendation for protecting ears: magnesium.
Magnesium-deficient lab animals exposed to noise have much more damage to the nerve cells in their cochleas than animals fed a diet adequate in magnesium, Dr. Attias says. What happens to these cells when the noise level gets too high? `The tiny hairs on these cells fuse or disappear, and they and their supporting cells eventually disintegrate, along with the nerve fibers going to these cells,' explains Dr. Attias. Low levels of magnesium combined with noise exposure eventually deplete the cells' energy stores, leading to exhaustion, damage and death of the inner ear cells, he explains.

Low magnesium levels can also cause blood vessels, including the tiny arteries going to the inner ears, to constrict. (Remember, noise-induced vasospasm is thought to play a role in tinnitus.)

Human ears, even young, healthy, normal-hearing ones, can benefit from extra magnesium, Dr. Attias says. He found that Israeli soldiers who got an additional 167 milligrams of supplemental magnesium daily had less inner ear damage than soldiers getting placebos (blank look-alike pills). According to Dr. Attias, a more recent study showed that supplemental intake has this same protective effect against long-term noise exposure.

If you're faced with a noisy environment, you'll want to make sure that you're getting the Daily Value of magnesium, which is 400 milligrams, Dr. Attias says. Most people fall short in that regard, with men getting about 329 milligrams a day and women averaging 207 milligrams a day.

Green vegetables, whole grains, nuts and beans are packed with magnesium. (If you're considering taking magnesium supplements, be sure to talk to your doctor first if you have heart or kidney problems.)

If your tinnitus includes a sensation of fullness in your ear and balance problems, experts recommend that you get adequate amounts of calcium and potassium as well. These additional symptoms could be a sign of Meniere's disease.''
http://home.revealed.net/jimchiro/Tinnitis(Ear-Noises).html

``Tinnitus is sometimes caused by impaired blood flow to the ears, which can happen in two ways, Dr. Seidman says. First, the tiny artery leading to the inner ear can get clogged with cholesterol, causing a kind of stroke in the ear, he explains. Second, loud noises can send this artery into spasm, reducing blood supply to the cochlea. In either case, an interrupted blood supply can lead to hearing problems.

That's where the antioxidant nutrients - vitamin C, vitamin E, betacarotine and others - come in. `Antioxidants work by helping to prevent oxygen-caused damage to cell membranes,' Dr. Seidman explains. Anti-oxidants also help keep arteries open and free of plaque buildup, experts say.

Dr. Seidman and some other ear doctors suggest that you consider a smorgasbord of antioxidant nutrients: 400 international units of vitamin E daily, 250 mg of vitamin C twice daily, 50 to 200 micrograms of the mineral selenium daily and about 50,000 international units of beta-carotene twice daily. Doses of selenium exceeding 100 micrograms daily can be toxic and should be taken only under medical supervision.'' (5)

``Magnesium, calcium and potassium are other minerals that are critical to the normal functioning of the inner ear, explains Charles P. Kimmelman, M.D., professor of otolaryngology at New York Medical College in Valhalla and a physician at Manhattan Eye, Ear and Throat Hospital.

Because these minerals are so important to healthy ears, some doctors tell their patients with Meniere's disease to make sure they get at least the Daily Values of these nutrients.'' (5)

OBJECTIVES/HYPOTHESIS: Otolaryngological manifestations are common in Lyme disease, affecting up to 75% of patients. One of these symptoms is sudden deafness. Hearing loss has been frequently described in Lyme disease; on the other hand, titers seropositive for, the causal agent of this disease, have been found in almost 20% of cases of sudden deafness
PMID: 12567088

Magnesium must be taken with a TINY, TINY amt. of B6 with each dose. Magnesium malate is a great choice, magnesium glycinate is easiest on the stomach. Magnesium oxide is alkaline...NO! Taking it with a little selenium (25mcg) per dose too may "boost the immune" by bonding to any "stragglers".

Malate is malic acid. It chelates (removes) aluminum. Selenium chelates mercury. Magnesium chelates many other heavy metals.

This bug depletes Mg...big time. When less # of bugs = symptoms lessen.

The pathogens (disease causing bacteria) do not like strong neg. charges...acids, all of them, have strong negative charges. Most pathogens LIKE positive charged metals, esp. those in the mitochondria (the "furnaces" of our cells).

I have had considerable success with xanax to help me sleep. It too can make you dependent (and I suspect by now I am), but gives me no grogginess or any other side effect. Just a really good relaxant!

I have to ask about the babesia thing that Tincup raised. I have never been tested for babesia or treated for it. My LLMD says that the hallmark symptom is night sweats, which I don't have at all. Absent that, he is not inclined to consider babs. Should I be pressing him more on that? Really my only remaining symptoms are tinnitus, the electric feeling, fatigue, and dry eyes. Is that at all consistent with babesia?

Here is a bit of scatttered Babesia notes that might give you some info...

Dual Infection Worsens Lyme Disease Symptoms

People with concurrent Lyme disease and babesiosis suffer a greater number of
symptoms and a longer duration of illness than patients with either infection alone,
concludes a June report in the Journal of the American Medical Association co-authored
by several NIAID grantees.

Coinfection with both tick-borne pathogens occurs in about 10 percent of patients in
certain areas of southern New England. In these and other areas where both infections
exist, the authors write, "the possibility of concomitant babesial infection should be
considered when moderate to severe Lyme disease has been diagnosed."

The prospective, longitudinal study included all cases of Lyme disease and babesiosis
identified during May through September from 1990-1994 in an island community in
Rhode Island and during 1992-94 in two Connecticut medical clinics.

Of 240 patients diagnosed with Lyme disease, 26 (11 percent) were coinfected with
babesiosis. Coinfected patients more frequently experienced fatigue, headache, sweats,
chills, anorexia, emotional instability, nausea, conjunctivitis, and an enlarged spleen than
those with Lyme disease alone. Exactly half of the coinfected patients had at least one
symptom, primarily fatigue, that lasted for 3 months or longer compared with just 4
percent of the 184 patients afflicted with Lyme disease only.

The ten patients diagnosed
with only babesiosis also had fewer symptoms and a shorter course of illness than did
patients coinfected with Lyme disease.
Babesial parasites invade red blood cells and cause a malaria-like illness characterized by
fever, chills, drenching sweats, muscle pains, headaches, and malaise.

In contrast, the
Lyme disease spirochete homes to various tissues and causes a flu-like illness, rash,
arthritis, and less often, inflammation of the heart and nerve disorders.

The life cycles of both pathogens depend on the same reservoir host, the white-footed
mouse, and the same transmission vector, deer ticks. Thus, the possibility of coinfection
is of potential importance, the report cautions, to the many people who live or vacation in
sites in the northeastern and Great Lakes regions of the United States where these
infections are emerging.

"Physicians caring for patients with moderate to severe
Lyme disease," they write, "should consider obtaining diagnostic tests for babesiosis
and possibly other tick-borne pathogens in regions where these diseases are
zoonotic...."

NIAID grantees David Persing, M.D., Ph.D., of the Mayo Clinic in Rochester, Minn., and
Sam R. Telford III, Sc.D., and Andrew Spielman, Sc.D., both of Harvard University in
Boston, contributed to this study. A second study led by Drs. Telford and Persing raises
the possibility of coinfection with still a third pathogen.

This study found that the deer
tick also is the primary American vector of human granulocytic ehrlichiosis (HGE), an
infection first identified in people just two years ago. In addition, the white-footed mouse
is the main reservoir of HGE infection.

Babesiosis symptoms include:

Fatigue * Arthralgias* Myalgia* Drenching sweats*
Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness*
Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly*
Jaundice* Malaise*

Shortness of breath* Bleeding tendencies, bruising*
Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema*
Encephalopathy* Low to normal range leukocyte counts*

Possible elevated levels of
dehydrogenase, bilirubin, transaminase* Anorexia***

Approximately 25% of Babesia
patients are known to be co-infected with Lyme disease.

"As with malaria, these
symptoms can continue over a protracted period or abate, then recur." A chronic
infection would normally show a low titer (IgG). An acute or current infection may show
a high reading on the IgM test results.

Quinine Sulfate is contraindicated in persons with optic neuritis, which is one of the
problems many Lyme patients have developed. This medication lists precautions for
those with Vitamin K deficiencies and clotting disorders which are often found in
patients with Lyme disease.

"Seven days of treatment with Quinine" has been proven to
"be ineffective in cases that are chronic". Mepron/Biaxin combo or Mepron/Zithromax
are the preferred methods of treatment. It may take a year or more of these
combinations.

It is recommended that patients who take Mepron for Babesiosis should
eat fatty foods to aid in the absorption process. Ginger is found to be helpful to ease
nausea in some patients.

There are a number of references warning of false negatives for the Babesia tests, but no
references for false positives tests. (Smears, antibodies, PCR, and FISH)
Toxic overloads (HERXHEIMER REACTION) are seen in many cases after medication
for Babesiosis is given, generally appearing first on the third to fifth day, and then about
every three to five weeks, thereafter.

"Although high titers (even at 1:4096) have been detected in patients in the acute phase, a
cut off point of 1:64 is generally accepted as diagnostic in IFA testing." The literature
states that a "Titer of 1:64 (is) indicating a chronic or subclinical infection."
"Co-infection increases the severity of the disease, therefore, it is important to diagnose
and treat both infections." Complications include "relapses". It is recommended to treat
Babesiosis before Lyme Disease in order to increase the effectiveness of Lyme
treatments. The highest risks for death:

"The elderly, immunosuppressed patients, and
splenectomized patients are the typical populations at risk for severe infection.

Patients
who are co-infected with Lyme disease have a higher risk of life-threatening illness
than with either disease alone."

Of the ticks collected (in the NE US) and sent to the IgeneX Lab by Dr. Richard Ostfeld
at the Institute of Ecosystems Studies, 43.3 % of the ticks were infected with
Babesia microti (November 1998). Serum samples sent to IgeneX Lab in California, by
Dr. Richard Horowitz in 1998, reveled 66% tested positive by RNA and/or PCR.

Please excuse me getting side tracked. I TRIED to ignore Jeff.. but he is an ok guy, ya know... hehehe

You said..

"Please tell me, how did a chiropractor help you?"

Right now I have a headache- like the one that hit Atlanta just after Sherman pulled out.. so I am not able to do too much detail (Had MRI on brain yesterday)... but I will say it has helped all over and forever.

I couldn't.. and wouldn't have made it this far without them. And I was originally a big time, "DON'T go to anyone to have your neck cracked or they will kill you" person from the start, from the bad info that was fed to me from the medical profession. When I finally went I was SOOOOO bad and had no other choice after all the major hospitals and ducks failed me.

There is some information I posted in the past.. so if you don't mind... you could do a search on chiropractor and use my name in the search box below. (The search button is the one on TOP of the screen here... not the one on the side).

"Do you recommend this while on the antibiotics for Lyme? What can a chiropractor do?"

Most definate. On or off meds.. a chiro can help big time... they can help with diet stuff, leaky gut, yeast problems, etc.. and one big function is keeping the immune system stronger... and pain levels lowered... and you functioning better. And surprisingly... is that a word?... they help totally with depression! Seems the nerves are compressed (due to swelling, lack of use, etc) that feed the areas that control this... so I don't use any anti-depressants, etc..

"How do I find one familiar with this problem?"

I suggest checking the local area for folks going to chiros near you. They are NOT all created equal. If given the choice.. you might want to try a chiropractic neurologist. I got kinda bad after the tractor trailer ran into me.. so I was in more need of help and luckily my chiro sent me to one for more advanced care. So far.. I am not flooding bleeding every day after 4 years of it. I no longer need progestrone cause my organs and glands have "come back". I was able to go off thyroid meds all of a sudden which saved me $$ and I felt better.

I no longer.. or rarely fall over, loose my balance as bad... fall flat out ... drift from side to side... walk like I had toads underneath the balls of my feet...

I am in much less pain, less headahes, etc. etc. I breath better too.

With less pain came more energy, less depression, etc. I was able to FINALLY walk a mile a day again! I blew it though, by crashing on too high a dose of meds... but am starting to "come back" after that STUPID episode. There are several folks here who go to a chiro.. actually quite a few... and they seem to like it alot.

"Did you go to the chiropractor after antibiotic treatments?"

I first went when NO ONE would help me and I was bed bound and living alone and had to crawl one morning to get 10 feet to the bathroom. I made it.. got to the sofa.. and I think I sat it that one spot and cried for about 10 days. Darn.. I am crying now just thinking about how awful I was...

Anyhow.. out of sheer desperation I called one local chiro. They didn't know if they could help.. but offered to try. Wow... HONESTY! For the first time in years!

I had gone to physical therapy for 5 years.. three days a week before this but when I went to Florida the therapists there were not nearly as advanced and I was getting no where and insurance had cut me off too... so I stopped.

I went to chiropratic less often which was nice.. more at first then tapered down.. and was able to get down to one visit every two weeks. I had gotten to where I was walking 2 miles a day for exercise... and I had just done 5 miles on my old bike. PRETTY darn good for someone with chronic tick borne infections.. 5 or 6 of them at that point.. and not being currently treated for them (I had been on several months of Zithro and that got me out of the gutter and I was able to move about... the rest I did through exercise and chiro).

Then the truck hit me...

I have been going steadily to the chiros now for about 5-6 MORE years. I had a good deal of damage in the accident.. and when I got hit the Lyme got worse from the stress and trauma to my whole body.

Now.. will it fix the tinnitus for you?

Beats me? But it is sure worth a try. And they won't interfere with your LLMD's protocol at all. They can't CURE Lyme.. but they can sure enough improve the quality of your life.

Here is a site to check for a chiro neuro in your area. Hope this helps. If you have more questions.. go ask your local preacher... I am done here...

hehehe

Nah.. let me know if you need help... I will try.

Also... I don't recall any ONE antibiotic that helped with that symptom more than another. I recall (and I was on several different things over the years)... but I recall that PROPER long term treatment helped.. no matter the specific meds at the time. Once I started feeling better the symptoms would disappear.

And don't come back here and ask how long it took... or I will have to stick you in the "annoying" file.

I don't really remember that... sorry.

Here is the site just for you.. I THINK I saw a chiro-neuro in your area? Keep in mind.. in this speciality field.. there are only 500 world wide.. so if you must travel a bit... don't be shocked.

I MUST need them. I drive 2 hours ONE WAY once a week to every two weeks now. I wouldn't do that for nothing or if it wasn't helping.

I THINK you are in Oakland? Can't remember right off.. but I see two listed there.. LUCKY YOU!

http://dendrites.com/contacts/dacnb_1.html

Thanks a ton for the babesia info (and for forgiving my sidetrack). Also, thanks for the info on chiros - - that was extremely helpful to me too! I am going to a neurologist for the first time this week. I expect to hear the old "you've been on abx so long that you couldn't possibly still have Lyme" line. So maybe a neuro-chiro is the next stop for me? Thanks to the site you provided, I see that there is one within an hour of me.

You rock and rule!