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» LymeNet Flash » Questions and Discussion » Medical Questions » Feeling at the end of my rope.......

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Author Topic: Feeling at the end of my rope.......
oceangirlSA
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I think I have reached the lowest low since beginning treatment nearly three years ago and I hope its ok to write a post of this nature. Sorry but this is long.

After not being able to tolerate zithromax a couple of months ago due to ringing in the ears and hyperacusis, I came off it along with Mepron, and just stayed on my IV doxy.

Then I started malarone and cryptolepsis a few weeks ago, and about 10 days ago, I started getting pain and pressure in my ears again, and increased tinnitus.

It escalated very quickly, and after a few days of this, I called my LLMD, but he could not speak with me and said he would call me back.

He never did, and I sent him an email, and he did not reply to that either, so I quit both the crypto and the malarone, because I was so afraid of getting permanent ear damage.

My ears still feel awful, 5 days after quitting the meds, so now my anxiety levels are massive, worrying about ear damage again.

This recent experience is making me so depressed and hopeless.

Treatment was always my hope of having a normal life one day, but now my body is acting as if every drug I need to take to get well is toxic to me.

I am still on IV doxycycline, but after reading many posts here on Lymenet, I am worried that I am so full of cysts because I have not being able to take Tindamax regularly for various reasons.

I have always been a strong person with a strong faith in God, but I am feeling totally overwhelmed, anxious about my future, and struggling to take care of my two kids on my own who also both have Lyme and co, one of whom is very ill and unable to go to college.

I run a small business from home, but cannot even manage part time work right now. Every day I am in tears. I know so many of you struggle but how do you deal with getting through each day when it feels hopeless?

I am doing everything I can to help myself - exercise, therapy, supplements, prayer, but this setback feels like the biggest blow in my treatment because it just feels like my sword to fighting this illness (i.e. medication) is being taken away from me.

I have made an appointment with an ENT, am seeing my LLMD tomorrow, and am going to get some genetic testing done to determine if I am a poor metabolizer of medications in case that is part of the problem.

I guess I would really appreciate some encouragement from any of you who have had to face big hurdles in their treatment, and who have come through on the other side because I just cannot face living the rest of my life with all the symptoms and pain I have every day.

Blessings and thank you so much!

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Ellen101
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Sorry you are having such a rough time. Your LLMD not getting back to you is inexcusable. I would definitely discuss this tomorrow.
After 3 yrs of treatment perhaps it is time to look beyond Lyme?
Adrenals, hormones, candida, heavy metals and leaky gut may need to be treated. To keep going after Lyme without investigating and treating other issues will cause more damage.

It does not sound like your LLMD is providing the support you need. Maybe it is time to consult a Naturopath or Integrative physician.

Please try to hang in there. Many here know how you feel. It will get better.

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GretaM
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Oceangirl-I am so sorry you are going through the ear pain again! It sounds awful!

I don't have any advice, but wanted to send you a zillion hugs and wish I could be there to support you at this low time.

I'm so glad you see your LL tomorrow-hopefully there is a game plan for you so you don't feel so helpless.

There are other swords. (Rife, herbal cyst busters), so don't fall on the abx sword yet.
[group hug]

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GretaM
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Also, saw this on a bumper sticker one time,
"When you've reached the end of your rope, tie a knot and hang on tight!"
[group hug]

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dbpei
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oceangirl, I have been where you are. It is so discouraging. Tinnitus can drive you to tears (and insanity [dizzy] ) when it is really bad.

I remember an increase in my tinnitus the first time I tried crypto. It was so bad, I put it away for months. For some reason, when I tried it again, it was not so bad. I also remember xithromax making my ears much worse and having to change to biaxin.

This disease is so difficult because you often feel worse before you feel better and you don't know whether you are herxing or getting worse! I agree with Ellen that your LLMD should have gotten back to you. [Frown] That would have made all the difference for you.

I have run into similar with past LLMD's. That is what has made me go from one to another, when I wasn't getting the support I needed. I am really sorry that you are going through this.

Let us know how your LLMD visit goes - as well as the ENT. I think I have been to 5 ENT's with all of my ear and sinus involvement hoping to find out if it was something besides Lyme and Co. Nobody yet has been able to help me.

I have very odd head symptoms that all seem connected to my ears, sinus and jaw. Still searching for answers and will be starting to see a new LLND soon. PM me any time you want to vent or compare notes. Hugs to you! [group hug]

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poppy
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I also went to an ENT for the lyme ear issues. It was a total waste of time. Stupider questions it would be impossible to imagine.
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oceangirlSA
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Thank you everyone who has responded so far - it means so much to me to have your support.

I should have joined Lymenet ages ago, because I have been wandering in a wilderness for too long without support or understanding.

Ellen, yes, my LLMD should have responded to me. He is the only medical professional in the office, so if he cannot get back to you, then you are left hanging, unfortunately.

I do have a ND who I work with and I am addressing the adrenal fatigue and candida. Hormones are new to me. I am in perimenopause and just starting with the sweats/hot flashes etc, so am trying to tease out what is babesia and what is hormones.

Greta, thank you so much for your support. I know you have been through a lot too from reading your posts. Sending you a hug back! [group hug]

Dpei, I can really relate to your situation - I have tons of muscle and joint pain, but my worst symptoms are all in my head, ears, face and jaw too. Headaches, head pressure, jaw pain, ear pain, painful scalp, throbbing teeth, slurred speech - I could go on and on.

I was bitten multiple times on the head by ticks, and my LLMD has said to me that is why I have so many head symptoms. The muscles in my face atrophied from nerve damage and I have alot of neuro stuff going on.

If I didn't have the head stuff, I could manage my life just fine, but the head stuff is what brings me to my knees.

As for my ears, my problems have all been from ototoxic side effects - my ears were fine before being diagnosed with Lyme - just some mild occassional tinnitus. My LLMD never told me that my ears could be damaged by antibiotics. Now that they have been damaged, it seems they are affected by nearly every medicine I take which is very scary for me.

Thank you for sharing that the crypto bothered you too. I spoke to the pharmacist where I got my crypto, and he said that the malarone was increasing the effects of the crypto and told me to come off it. I never even got to the full dose. I just hope that my ears recover from it.

Poppy, I don't have much faith in doctors in general any more, but supposedly this ENT is an otologist, who specializes in tinnitus etc. He may not do much for me, but it makes me feel better to know that I am taking charge of my situation.

I will let you all know later how my appointment goes. [Smile]

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Catgirl
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My doc says it's not the lyme that kills you, it's all the other stuff. So I agree with Ellen, look for other things beyond lyme.

Treating for parasites (even though I couldn't see them) cleared up my ear issues.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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oceangirlSA
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Catgirl

What ear issues did you have? Were the parasites in your ears?

Did meds affect your ears at all?

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surprise
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I don't know if this is going to help at all, but my brother has tinnitus, but no Lyme-(I guess) he has been through the gamut with tinnitus, every specialist imaginable.

He has found cutting certain foods out of his diet helps-
I don't know all the foods, I'm sure it's individual,
but example is chocolate, etc.

I'm sure it's not so simple, but it helped him make it more manageable, identifying food triggers.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Phoiph
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OceangirlSA...

Your story sounds similar to mine...although I eventually became unable to take antibiotics at all, and was homebound for 5 years. I was also at the "end of my rope".

I eventually found mild hyperbaric and am well now. Here's a thread (6 pages):

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201

Never give up hope...there are other paths to wellness...

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Catgirl
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I had ear pain. sometimes pressure, pain below the ear (sometimes sharp pain), itchy ears (inside and out), sometimes felt like water was whooshing inside them.

Parasites are not readily recognized in our society, so the docs don't look for them, much less consider they would be in our ears. I had other symptoms besides the ears though, so when my doc put me on parasite meds, my ears were one of the first things to clear up.

Yes, meds did affect my ears. Some gave me tinnitus.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Lymetoo
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Catgirl... you are right about the foods. Some people get ear ringing from foods high in salicylates or high in histamine. Chocolate is high in both.

oceangirl... Keep the faith... maybe going off the drugs is the best thing you could do right now.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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oceangirlSA
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Phoiph

I am blown away just reading your first page of your recovery using mild hyperbaric. I am going to continue to read your post and do some research of my own.

Your post gave me alot of hope, even though I am aware that what works for one may not work for another.

Thank you for sharing this! At least I know this may be an option for me if I cannot continue to take medication.

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oceangirlSA
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Catgirl, I agree with you that parasites are not readily recognized by our society. I lived in Africa for a long time where parasites are a significant problem so who knows what I am carrying around in me.

We used to get de-wormed every 6 months growing up there, but its unheard of here. I have had several stool tests to check for parasites in the past couple of years, but after listening to Dr K's podcast I now see how clever these beasts are at leaving no evidence of themselves.

I am definitely going to include parasitic treatment at some point in my protocol. I have already looked at some of the herbal options and have been reading the parasite thread.

I hope you have not been left with any permanent tinnitus like I have from the meds.

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glm1111
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I had tinnitus so loud I could hear it ringing above the noisy city traffic. It is gone after extensive parasite tx with no known permanent damage.

P.S. Parasites love the head area imcluding the sinuses and ears.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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oceangirlSA
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So I went to my appointment with my LLMD today, and learned that he was out of the country when I called him, and that he was unable to return my call or email for that reason. At least I feel better about that.

We spoke at length about my protocol and medication issues and have come up with a plan for now. He is testing me for all the stealth viruses, repeating immunoglobulin testing, and several other things.

My thyroid tests showed my levels were low so we are upping my thyroid meds, and my latest hormone tests show that I am in full swing on the way to menopause but not quite there yet. I am not ready to go on hormone meds for now, so we will just monitor things for the moment.

I have been going for trigger point dry needling therapy the past week, which has shown some immediate help for my muscle pain, so I am going to continue to do that and try and get my muscle pain levels lower which will make me feel better.

In terms of my meds, I am going to take a break of everything but my IV doxy for now to give my gut and ears a break and try and get any candida under better control, and then once my ears are better I am going to try some penicillin along with the doxy and add Tindamax back in.

After that we are going to tackle Bart. If I cannot treat the Babesia due to drug intolerances, that will be another story. He also said next time we will talk more about tackling biofilms more aggressively.

Once we have better control of my symptoms, I am going to get all my amalgam fillings removed too, but my dentist won't do that now until my Lyme symptoms are better under control as the last time I had an injection in my jaw, my jaw locked due the lyme going crazy in my jaw.

I am also going to have some genetic testing to see if I am a poor drug metabolizer in case that is playing a role in my inability to take medications.

So I have a long term plan for my treatment now and that makes me feel much better.

Thank you to all of you who responded to me - I really appreciate your input and your support!

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Ellen101
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Sounds like a great plan [Smile]
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dbpei
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Thanks for the update, Oceangirl! It sounds like you had a meaningful visit and now have a good plan in place. Good luck to you and hoping that your tinnitus will be more tolerable for you over time...
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Catgirl
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My tinnitus is better. It acts up sometimes when I'm treating parasites, but then it gets better (making progress).

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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oceangirlSA
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So glad its better Catgirl! It can be an incredibly annoying symptom. I always try and remember it is noise with meaningless information but I wish it would just completely disappear.
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Catgirl
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Thanks Oceangirl! I hope yours gets better too (treating for parasites). :)

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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lyme in Putnam
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God bless. Minute at a time

--------------------
He took u to it, He'll you through

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oceangirlSA
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Thank you Lyme in Putnam! I have to keep reminding myself to do that - I am a work in progress!
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Nancy L
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chlorella (I use Source Naturals) binds both with biotoxins from Bb and other bacteria, but also with heavy metals like mercury, in your system.

Until you can replace your mercury fillings, this may lower your heavy metal load. chlorella binds and then excretes biotoxins and heavy metals from your system but does not bind the minerals your body needs. It is just a food and reputedly very safe.

Tinnitis is still a continuing problem for me, and it is caused by Bb or coinfection, not meds in my case.

Gael and Catgirl, what tx helped your tinnitis?

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oceangirlSA
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Thanks Nancy!

Does chlorella bind with antibiotics as well?

How far do you space it away from your meds?

I take other meds like thyroid meds and a beta blocker so need to be careful those aren't affected.

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GretaM
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Hi oceangirl [Smile]

Yes chlorella binds with everything under the sun.

It needs to be taken far away from important meds.

I aim for four or more hours.

Most times I take it and activated charcoal is in the middle of the night when I get up to pee.

I keep them in a little container in the bathroom. Don't even turn the lights on, I just feel for the cup, slam them down and then drink water.

It's not pretty I'm sure, me in my skivvies taking pills in the dark half asleep, but my cats don't mind [Smile]

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LisaK
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heavy metals causing tinnitus

http://www.tinnitustalk.com/threads/heavy-metal-poisoning-can-cause-tinnitus.292/

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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oceangirlSA
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Thank you for the info Greta! Your description made me smile! [Smile]

LisaK, thanks for this link - very informative!

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Nancy L
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My LLMD said not to take antioxidants near my minocycline antibiotic, and when I gave my daily herbs to her, she said, not chlorella near the mino. And not Vit C and multivitamin, etc, too.

Mino has a short life, so if in morning and evening the mino, then maybe 2pm or so the chlorella (or middle of the night ) [Smile]

Lisa I don't think heavy metals cause my tinnitis, since it came on gradually after the lyme infection.

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nefferdun
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I am just sending support. You have a lot of strength to do what you are doing working and having sick kids as well. It sure can be depressing at times.

I have trouble with drugs too so I am on and off of them all the time. I feel I can't recover without them though. I have treated 6-7 infections so far. i was re-infected at least once and probably twice. I am a lot better than the beginning.

I am used to the ringing in my ears. It is kind of like needing glasses. I just ignore it. I hope you get answers and begin to feel better.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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LisaK
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Nancy, my tinnitus came gradually also. now with treatment it can get pretty loud.

24/7 never goes away.... I hope it does one day

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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oceangirlSA
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Nefferdun, thank you so much for the support - I appreciate it!

Sometimes I think that because both my kids are sick as well, that my raging stress levels are really interfering with my ability to heal. My husband died 8 years ago, so I have been a single mom for a while now, and we all got sick after he died.

I do respond to antibiotics if I can tolerate them, but I am small, only 4f 11", so the high doses that are prescribed for Lyme almost kill me and cause so many side effects.

However, even if I do take a smaller dose, I suspect I might be a poor metaboliser of drugs, which might explain why I have trouble with them. I am looking into this possible problem and getting tested.

I hope I can just ignore the ringing like you do too - trying to work on my perception of it but my anxiety about it often gets in the way.

I am glad to hear that you are alot better though in spite of having problems with drugs!

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overlyme
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oceangirlsa,

just want you too know that I was just like you with

Lyme and it does get better. Don't lose your faith!

I gave up all antibiotics and left it to God. i have

been off antibiotics for over a year and have

stunned my llmd. I work everyday and can deal

with alot of stress at work that in prior years I

would not have been able to do it. faith is what

set me free from having to take those meds that

made me feel just like you describe. meds are a

nightmare and the candida will take over and a

constant struggle will be the daily norm. but it

does not have to be. I was at my support group for

Lyme and i was not there because i needed to be

but rather I wanted to tell them the truth about

how I got over lyme. i did not tell them my story

but just listened to how they were doing with

there antibiotic protocols. I did not say anything

because they would not understand what I was

talking about. faith and healing does it exist?

oh yes! does god exist? oh yes! pm me if you want

to know how I did it using the word..that tinnitus

does go away..hang in there

--------------------
been there done that!

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dbpei
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oceangirl, I am so sorry for what you have had to go through. I can't even begin to imagine the load on your shoulders and the pain in your heart. You must be one very strong and amazing woman to be taking care of yourself and your family the way you have been.

I cannot prove this, but I believe that for some of us with Lyme (and probably a lot of the coinfections like bart and babesia) when your nervous system is attacked, that our levels of tinnitus can really vary and the volume and intensity can be much more severe for some than others.

I used to have occasional bouts of tinnitus before I had Lyme - and those episodes were so much easier to tolerate and much less intense. It feels like the tinnitus that I experience now on some days is like psychological torture. I am sure that my 7th cranial nerve is infected (I also have severe hearing loss and vestibular damage on that side) and that is why the sounds can be so difficult to tolerate.

What makes it more difficult is that when you are taking herbs and/or antibiotics to get better, it can cause a flare in your tinnitus and also affect your hearing (distortions, auditory fullness,...) and this makes it hard to continue on those things because you don't want to do more damage!

I have read many postings here of people who used to have horrible tinnitus as well as hearing loss and now both are much improved after being treated successfully. I pray that will be the case for us and for many here who are suffering with this.

One of the things that has helped me (I believe) is cordyceps. I read about this in Stephen Buhner's book as modulating the immune system and decreasing tinnitus. I buy the tincture from Woodland Essence and drink about 1/4 tsp with pomegranate juice 3 x day.

Another few things that I believe help to calm tinnitus and protect the ears are magnesium, vinpocetine, lysine, and zinc. Something I wish I had known a couple of years ago was to increase magnesium if you ever feel that you are having more hearing loss. For some, it can protect the ears and even repair damage done if taken right away after loud noise exposure.

I hope all of this helps you in some way. Hang in there.

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springshowers
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http://www.dr-wilden.de/en_info/31.html

Doctor in Germany who treats ears and there issues and using
LLLT and has detailed info on how he does it and studies and photos and diagrams and is a specialists in ears.


Tinnitus is an FDA approved condition for LLLT therapy.

I also heard recently that biofilms are the cause of tinnitus of the ear and I believe it was on a Dr MacDonald video but in not positive that's where I heard it.

I myself have very mild ear issues that cone and go so I can't test my laser on this issue but because In my research I came across the application so often I wanted to share it.

Do a search yourself on LLLT or use words cold laser and tinnitus and you can find plenty of info.

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springshowers
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Also read this.

"The therapeutic approaches described above are based upon the assumption that the origin of tinnitus is somewhere in the inner and middle ear, prominently in the cochlea. While this is quite likely in many cases, there is a fair scientific evidence for a somatosensory connection for tinnitus as well as Meniere (10-17). This means that the origin of the noise is not coming from the ear but from overloaded muscles, predominantly in the masticatory and neck muscles. The noise is then in fact a phantom phenomenon (18, 19). Somatosensory tinnitus thus becomes a separate diagnosis requiring different therapeutic approaches than conditions located in the inner ear. The latter is still a valid hypothesis (20) but of different origin and needing different therapy."

From this site

http://www.laserannals.com/2012/03/11/is-laser-therapy-a-useful-tool-for-treating-tinnitus/

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oceangirlSA
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Dpei, I read somewhere that when our bodies are healthy, we are much less likely to suffer from tinnitus or any other side effects of medications to the ears than if we are in poor health, so I agree that strengthening the immune system might help.

I have been taking Ashwagandah for that, but have heard many good things about cordyceps, which I will research again. I recently increased my magnesium to 750mg per day and have ordered some of Dr Carolyn Dean's Remag to add to my magnesium supplementation to get my magnesium levels even higher.

What is frustrating, is that I have just had to start a course of diflucan, and after three days have had to quit that now due to increased ringing in the ears once more. My doc said to take it twice a week instead, and continue to use nystatin, Lauricin and coconut oil as well.

When I looked up the half life of diflucan, it is 20 - 50 hours, so it seems that many drugs with a long half life, just build up in my system and cause problems with my ears. So now I am taking milk thistle as well to keep my liver functioning optimally.

Springshowers, thank you for your links - I read them both and they are very interesting. I have also printed them and am taking them to my ENT appointment this week.

I have my audiology appointment tomorrow and see the ENT on Tuesday. Whilst I am not getting my hopes up that they will be helpful, the form I had to fill out actually asked, "Have you ever had Lyme disease?" which blew my mind, so I am hoping they might just be a little more open minded than the average doctor about tick borne infections.

Overlyme, thank you for your encouragement and support! My faith has been my rock throughout my life - don't know what I would do without my belief in a God who loves me.

I am so glad to hear how much better you are now! I hope you continue to maintain optimum health.

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Lymetoo
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You will LOVE the ReMag, oceangirl!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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oceangirlSA
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I just wanted to update this thread by saying that I finally went to see an ENT and had a hearing test done.

My hearing test was normal, and my visit to the ENT was great! He actually believes in chronic Lyme, and listened to my whole story as to how I got sick!

When I was done telling him, he said to me, "Wow, that is a classic chronic Lyme story!" When I asked him why he believed in chronic Lyme, he said that for years we have acknowledged the chronicity of syphilis, so why should there be any difference in the way borrelia behaves as the two are so similar.

He said he knew the blood tests for LD were not accurate, and that he has read so much about people becoming ill with chronic Lyme that he believes it, as there is much we do not know. He also said that he believes that one day the belief system about Lyme disease will change.

In terms of my ears, he said he felt that some of my ear pain is neuropathic, but that I could also have some eustachian tube dysfunction too, and said that he could do an endoscopy to evaluate that further.

He felt the tinnitus was most likely due to ototoxity from the Zithromax that I have repeatedly taken. He said the macrolides are a tough class of drugs on the ears, and that are not meant to be taken long term for this reason.

In terms of the overall health of my ears, he encouraged me to continue my Lyme treatment, and offered to monitor my hearing whilst on antibiotics to make sure that my hearing was not being damaged at all.

He said that he knows the treatment was very difficult for chronic Lyme, but that in the long run, toughing it out may be best for my health.

So I am going to have the endoscope to evaluate my eustachian tubes, and then will take things from there.

I had to post my positive experience with this ENT because it is so rare to come across a sympathetic doctor who is supportive and a believer in chronic Lyme. His bedside manner was so nice as well. My whole experience with him was terrific!

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randibear
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can you do herbs?

--------------------
do not look back when the only course is forward

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dbpei
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oceangirl, he sounds wonderful! And great news about your hearing! [Wink] Thanks so much for sharing how your visit went.
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