LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme wins

 - UBBFriend: Email this page to someone!    
Author Topic: Lyme wins
sideways
LymeNet Contributor
Member # 34352

Icon 1 posted      Profile for sideways     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here I am, almost 6 years after infection, treated for three years non stop and what do I have to show for it? Tinnitus caused by high-dose, long term zithromax (thanks, doc), and daily, unrelenting orbital pain and headaches. My Lyme treatment is done. I no longer have Lyme but these two parting gifts will stay with me forever. They're worse than Lyme ever was.

So, newcomers, as far as your ears go, if you don't want to hear a constant ringing in your head for the rest of your life, DO NOT let your doctor keep you on any macrolide without a break. They should be pulsing these meds. My oh-so highly regarded doc should've known better.

As for me, it hurts to see and when I close my eyes I just hear screaming. It's no way to live and I've had enough.I'll be taking my leave soon. Good luck to you all.

Posts: 181 | From Midwest girl gone home | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
A lot of people here have had a lot of tx. I took 1000 zith for for two yrs and other high dose abx. I did not get er or eye problems. I got well enough to work 20 yrs and raise my family

You have come to the right place. Please keep checking this thread. Someone who solved the tinnitus problem should come along

My life is not perfect...i have been in sime bad places...hang in and wait for answers

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
sideways
LymeNet Contributor
Member # 34352

Icon 1 posted      Profile for sideways     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thabks, but I've been here enough. Not looking for solutions anymore. What's done is done. Just hope someone else can avoid zithromax -caused tinnitus.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Im not sure it always causes tinnitus in evetyone. It saved me and i am searching tinnitus on here and finding many have it and are figuring out how to calm it down

I have read triggers can be foods with hhistamines esp pickles,vinegar and emfs

I had trouble with emfs causinf restless legs and neuropathy and by making one room emf free i got a huge amount of relief

Also someone said many rock stars deal with it...so i wouldnt jump to conclusion it was caused by zith and not be fixed

Statins messed up my tendons so much i was ina walker. Docs coyldnt figure it out for 3 months and i gave up on them...then thru a lot of reading i figured out mitochondria support supplements would help and the did

I know you hurt real bad right now but hopefully others with same problem will come aling and guve you the key

Do u know how to use search at top of page? I put in in tinnitus and there is a lot to read.

I ll keep looking but i am limited in ability to read and type

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
LisaK
Frequent Contributor (1K+ posts)
Member # 41384

Icon 1 posted      Profile for LisaK     Send New Private Message       Edit/Delete Post   Reply With Quote 
sideways, I wasnt' on zithro and I have tinnitus. I am getting checked fo rheavy metals at this moment- still waitng for labs.

I know how you feel. I had a non stop scream for about 2 weeks and it drove me mad. I thought of killing myself, but that is not the answer.

mine comes and goes in intensity for the last several years. but it never leaves. it is 24/7. this is probably what you have too.

waking up in the middle of the night with that noise is terrible.

I don't know what is causing it. were you ever checked for heavy metals? I am hopeful that is cause . then maybe I can treat.

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

Posts: 3458 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Keebler knows a lot and says berberine helps

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways, I am so sorry to hear this. Abx can cause tinnitus, but so do EMFS (not well known). I would try reducing them. It has made a big difference for both me and my husband (we have both done abx). Protecting yourself from them can reduce the load you are hearing.

You might benefit from seeing a naturopath as well. They are great for supporting our bodies. Also, ondamed is great for finding problem areas and repairing them (doesn't have to be lyme). It's PEMF technology is gentle enough for me, and I feel better after I get treated.

Also recommend eav, asyra or zyto for finding things your body is missing.

Hang in there so you can find peace. Just push forward for help and answers. We are all pulling for you.

http://www.amazon.com/gp/product/193890818X/ref=pd_luc_t_img_rh_bxgy_01_01_lh?ie=UTF8&psc=1

http://www.amazon.com/Zapped-Shouldnt-Outsmart-Electronic-Pollution/dp/0061864285

http://www.amazon.com/Overpowered-Dangers-Electromagnetic-Radiation-about/dp/1609805097/ref=tmm_hrd_title_0?_encoding=UTF8&sr=&qid=

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways...where are you from. I have lyme friends in missouri and kansas

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
I also know someone in delaware with a lot of experiece but cant reach her yet

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways .. I did find out when I got hives that foods high in histamine made tinnitus really bad. It is much better now that I avoid those foods.

I hope you can find something that helps!!

Moving to Medical Questions for more help.

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

Posts: 95340 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Suicide hotline:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/28030

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

Posts: 95340 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
droid1226
Frequent Contributor (1K+ posts)
Member # 34930

Icon 1 posted      Profile for droid1226     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've started to feel so much better when I accepted that I'll never know if the initial illness caused permanent damage or there is chronic viral/bacterial infections happening.

I don't think Dr. H knows, I don't think Dr. B knows. I don't think anyone knows, not even the patients. But you can indentify & collect small things along the way that make you feel better.

After a while, you stack those things up(and avoid the things that make you feel terrible), and maybe have some semblance of a life, or your life back. Idk. Just my advice.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

Posts: 1181 | From ohio | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
poppy
Frequent Contributor (1K+ posts)
Member # 5355

Icon 1 posted      Profile for poppy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had tinnitus from lyme before any antibiotics. My brother and sister have tinnitus, without lyme or antibiotics. I don't think there is a certain relationship between the meds you took and ear ringing. Although maybe in your case it was. These responses are so individual, it would be hard for any doctor to know what will happen in every case.

My achilles tendons were damaged by a floroquinolone drug. Not everyone has this happen with these drugs.

At some point you have to weigh the pluses and minuses and act accordingly.

I find it interesting that you are sure the lyme is gone but still have these headaches. My headaches came from babesia and stopped when it was successfully treated.

Your are six years in. I am twice that much, and lyme has won for me too, but my treatment now centers on staying functional rather than cure.

And back to tinnitus, it helps me to have music playing. It drowns out the ear ringing, or at least makes it less noticeable. Good thing I am a huge music fan.

Posts: 2888 | From USA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
There is also a connection with heavy metals and headaches, as well as a heavy metals and EMF connection.

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
I went thru a lot of what poppy did.

Headaches went away with lyme tx and foot pain went away with bart tx and sweats went away with babs tx

This thread is giving you some ideas of things to take and things to stay away from

I hope you figure it out

I got sick in early 80s, began tx in late 90's and im not 100% and ihad to accept my life was different than i planned...but im glad im here

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Actually, I do know something that was able to stop my tinnitus for 6 hours at a time, and I say only 6 hours because I treated at the office site and didn't have the tool at my place -

It's PEMF treatment - pulsed electro-magnetic frequency treatment - mine was done with a large 400-gauss strength box unit, but I understand Carol in PA uses a SOTA machine which I think does the same thing.

I held a white coil next to my body as the machine put out rapid e'm bursts. At first I did a couple seconds, and after several sessions, I was up to an hour holding the coil.

What's happening is the machine boosts the e'm frequency of the body and gets it to function better again - ions can go in and out of the cells better.

I spoke with a top LLMD about the tinnitis quieting down for 6 hours and he said it quiets down the nerves.

As I mentioned, I noticed pain went down too, bigtime. You're talking about pain too. This might turn out to be a pain reduction treatment for you as well.

I can understand with unrelenting symptoms like that how impossible it must be feeling. But Lyme and co's are explorative medical conditions: we "write" the book on what's happening with medicine. We're off the known cliff of what's supposed to happen.

Example with me - I had brain surgery for a tumor suspected of causing my high prolactin level. Surgeon: no tumor, I don't understand her.

Since treatment for Lyme, that high prolactin level has dropped into almost normal levels due what I've been taking, both abx and natural anti-inflams. Btw, I let the surgeon know.

Back to your situation - we need to see what's going to work. I know you feel bad, and I can understand how you feel with unrelenting symptoms, but I'd say you haven't investigated all your options yet.

And people need to be observant and thoughtful about what works. In the case of PEMF treatment,
it was first used on racehorses to return them to racing after injury. They saw that and started treating people.

I am pming someone who uses their own version to ask them to come on here and discuss more what they do with it.

Also alternative care practitioners might have a PEMF machine or know of someone who does.

Hold your horses, so to speak. Let's work on it a little here together. I see others here have discussed some explorative avenues too. Many of us have been through years in the dark. We know what you're talking about. My opinion is until I KNOW that I've exhausted possible remedies, it's too soon to say there's no more I can try.

Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways can you contact Phoiph re HBOT?
Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
lymenotlite
LymeNet Contributor
Member # 33166

Icon 1 posted      Profile for lymenotlite     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have tinnitus in one ear and have started rifing for it. There has definitely been an improvement. I've been using the tinnitus frequencies as well as lymph gland frequencies because the gland under my jaw is always swollen when tinnitus is the worst. Rifing has helped bring down the swelling in the gland.

It finally occurred to me that the tinnitus is possibly caused by gland swelling near the ear. I've had two ear specialists look at my ear and they saw nothing wrong. When I press on my ear, sometimes it unplugs.

I've always got sinus issues so today I started rifing on the sinus frequencies. I can breathe better but it will take longer than today to determine how effective this is in regards tinnitus. It's possible the sinus problem is causing the tinnitus with the lymph glands swelling and pressing against the ear because they are unable to keep up with toxin elimination.

Posts: 704 | From WA state | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Now that we're talking about sinus i guess i should throw this in. I would have chronic sinus and asthma if i didnt cinstantly nip it in the bud. For yrs i took sudafed for sinus and guaifenesin for asthma.

Awhile ago i found germ fighter from planttherapy.com. i have one expensuve duffuser and one really cheap one and the cheap one is better and easier. If i turn it on as soon as sx start i dont need the meds. And the more it is on the less i seem to get sx

So if inflam in these areas is triggering tinnitus...addressing the trigger with meds or diffuser might help a lot

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
sideways
LymeNet Contributor
Member # 34352

Icon 1 posted      Profile for sideways     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just don't have any strength left. I feel like I have a knife in my right eye every waking minute and a high pitch ring in my head that started after I started antibiotics. I'm in Michigan now. Left DC 4 months ago, thank God. I am seeing a new doctor but not treating Lyme. Testing for other things but I don't think i can last that lomg. I'm just tired. So tired.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Found this old thread of yours, did you ever get back on bart treatment (eyes)?

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=130074;p=0#000006

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Are you still on the steroids, sideways??

I do so hope you can find some help. Take every tip here and turn it into something positive.

We care!!

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

Posts: 95340 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
sideways
LymeNet Contributor
Member # 34352

Icon 1 posted      Profile for sideways     Send New Private Message       Edit/Delete Post   Reply With Quote 
The steroid shot i had for trochleitis in November did not work. I've not had any steroids since.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways,
Can you get family or friend to help you follow thru?

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank goodness you are not on them. I had to use a steroid nasal spray about 6 months ago and it made my head feel like it was going to explode.

I didn't last long on that.

Yes, sideways .. get someone to read this thread.

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

Posts: 95340 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
jlcd1
LymeNet Contributor
Member # 18138

Icon 1 posted      Profile for jlcd1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Mine was really horrible 2 nights ago then I did my portable infrared sauna and it helped a lot. Still there but I find if I skip too many nights of the sauna it starts to get louder and louder.
Posts: 908 | From Albany | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
sideways...

You are in Michigan...how far are you from Ann Arbor?

Posts: 1652 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Pain like a knife in right eye - I have another idea, if it's caused by Lyme - I drink mangosteen juice, which is an anti-inflammatory juice. It immediately stopped all Lyme eye symptoms. Lyme loves to hide out in the eyes.

If you'd like to try it and see if it reduces your eye pain, I like the Mango-Xan version as it's the most tart. You can find it in healthfood stores and online.

Re the sinus discussion above, I've seen someone tape small magnets over their forehead sinuses and within 10 minutes, the sinuses cleared up.

Seeing a doctor but not treating Lyme - um, we think you need to be seeing a Lyme doctor. Is that possible for you to do? There are a lot of people here who have some ideas for you to look into.

I just went and read your other thread - you mention possibly cranial nerves. Not a bad idea. I've had cranial nerve involvement across my face that just about killed me with its intensity. Cranial work was done by a good cranial person and the pain dissipated very quickly.

Anything we try is just that, a try. We never know what's going to work. But when it does, it's a blessing and it's what we're looking for.

Also you mention Bart. If you have it, that may also need to be treated.

I too think it would be a great idea to enlist a family member or good friend to read through this thread and help you think through what to try next. Even though you're feeling bad now, I and others don't think you've exhausted possible treatments - there's a lot out there to look into. Once you get the ball rolling and start to feel a little better, it will get easier.

Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Not sure if anyone mentioned magnesium or not. You can't rely on a standard magnesium blood test to say whether or not you are deficient in that mineral. Magnesium can help with tinnitus if it is caused by nerve inflammation.

I understand that you are in pain and suffering. But suicide is not the answer. Hubby actually woke me up and told me each of the times he took a med overdose. For him those were impulsive decisions that he regretted.

If you can find a caring compassionate counselor then that may also be helpful.

Pain is a symptom, but you need to treat it with either meds or herbs or supplements so that you can tolerate the treatment for the underlying problem that is causing the pain.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
sideways
LymeNet Contributor
Member # 34352

Icon 1 posted      Profile for sideways     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm on magnesium. A pretty high dose. I tried mangosteen juice a couple of years ago. It didn't help. The damage to my eye is done. I was with Lyme doctors for a long time. The best of the best. S-DNP, and Dr. J just a few blocks away from her. I also continue to see remotely a very good Lyme friendly, if not LLMD (I'm not sure) integrative doc who has had Lyme himself.
I'm just not treating Lyme because I never had any reaction, good or bad to any Lyme treatment. I'm not going to rehash my whole history. It's here. Just know that I've been on just about every supplement and every treatment. There's nothing that helps me, though I really appreciate everyone trying.♡

Posts: 181 | From Midwest girl gone home | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
sickofthepain
LymeNet Contributor
Member # 39579

Icon 1 posted      Profile for sickofthepain     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways, you are in MI too? I am still dealing with some of the same things.I have been coming

on here but haven't logged in in a long time.I first got my tinnitus after some dental surgery,

before I started any antibiotics, so I can say mine wasn't caused by them. It could be heavy metals.I have also wondered about cranial nerves.

I am scheduled to see another llmd in March.The last one didn't work out and haven't had money or insurance. I get the eye pain too(blindness). I

went to see a holistic dr several months ago and he put me on his machine and said that strep was showing up the most and asked if I had ever had

strep. Yes I had strep all of the time (and everything else catchy)as a kid and may have had it after the dental surgery or at least within a

couple of years(years ago). He gave me a bottle of something.I took it and it caused the horrible stabbing aching eye pain that I try to avoid

having.I know that the only thing that will take that pain away for me is amox. I didn't go back.Not that I don't have confidence, but I have

no amox, no dr and had to borrow some from a friend.Lost my temp job because I couldn't go to

work that day because the pain was so horrendous.Only had that job for a few weeks.Feel free to pm me.

Posts: 294 | From southwest mi | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
If it is cranial nerve wouldnt neurontin work? Thats what saved me from suicide. When the pain was under control i figured out what inti onflammatories would keep pain away

A few months ago my tri gwm pain broke thru the neurontin and iended up in er. They gave me stronger drug that does the same thing as neurontin

So if it is cranial nerve there should be a drug that can get you away from.the pain enough ti figure out what to treat...what is the cause....if not lyme or cos at least inflammation

I hope you can.find someone to help you...it is so hard to think when in so much pain.

Im so sorry this is happening to you sideways

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
sideways
LymeNet Contributor
Member # 34352

Icon 1 posted      Profile for sideways     Send New Private Message       Edit/Delete Post   Reply With Quote 
I saw my therapist today and told her what was going on. She had me call me husband. He knows too.

I had a stash of norco that I handed over to him today. Now I have to ask him for pain meds.

But I'm safe for now.

Posts: 181 | From Midwest girl gone home | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yay, hang in there Sideways!

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good job, sideways!! It will get rough but you can do it!!

So proud of you!!

God bless! I will pray for you tonight .. and as often as I think of it!

[group hug]

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

Posts: 95340 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bigstan
LymeNet Contributor
Member # 11699

Icon 1 posted      Profile for bigstan     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways me 7+ years tinnitus 24/7. I sit hear now left ear screaming. I really notice it when trying to sleep so what I do now is mask it out with an air purifier.

My ears are ****ed. When I was little each ear drum ruptured several times. I had a lot of ear infections and sore throats. Tonsils/adnoids removed at 3yr.

Beside the tinnitus I have severe popping every time I swallow. It goes like this pop pop pop pop pop very rapidly every time I swallow.

I too was put on zith 500mg daily for 7 months through a picc line. It probably did damage my ears more. I don't know because of the damage with the blown ears when I was little. Ive also been around a lot of loud rock music growing up.

Yes it can really get you down sometimes really bad. It really pisses me off. The best thing you can do is mask it out somehow. There are many many people with this condition and they manage.

By the way I'm in Michigan also currently freezing my azz off at -10 degrees.


PM me lets chat.

--------------------
HERX is a Four Letter Word!

Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good to hear - we have to be so patient to get through this and hopefully find remedies that will help! And have good social support too!
Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
bigstan
LymeNet Contributor
Member # 11699

Icon 1 posted      Profile for bigstan     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways PM me. Lyme never wins, tinnitus never wins we are tougher then this. Tough times never last but tough people do.

Just thinking and wondering if you see the same doc I do in Mich.

--------------------
HERX is a Four Letter Word!

Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Right on Bigstan!

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
lymenotlite
LymeNet Contributor
Member # 33166

Icon 1 posted      Profile for lymenotlite     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had sharp pains in my eyes and that would happen when I looked in a different direction. I was very worried about losing my eyesight but my eyes have completely recovered.
Posts: 704 | From WA state | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
MADDOG
Frequent Contributor (1K+ posts)
Member # 18

Icon 1 posted      Profile for MADDOG     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was on Zith for months. I never had the tinnitus.

I did have terrible direah, I named it $hit throw max.

It didn't even begin to stop the Lyme.

Just put me in the bathroom!!!!

I still have irratable bowel syndrome from it.

MADDOG

Posts: 3846 | From Ohio | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
While it's nice to see that some who took / take Azithromycin may not experience some / all of the ototoxic effects of it, it can be absolutely devastating for others.

And tinnitus, alone, can be absolutely devastating as well. It's certainly not at all the same for everyone.

It's important to validate that.

Azithromycin is one of the more ototoxic Rx and it can certainly cause all kinds of ear reaction and even permanent damage for some. It's important to know that.

Some people are more susceptible (or unlucky) than others, though. And much depends on the liver & kidneys . . . and the total load of toxins carried as well.

More about ototoxic medications / OTC here & what can cause damage to be worse (so you know to avoid) -- or what can help prevent it, help symptoms, too:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
sideways,

the note above was more for others who may not understand as zith did not affect them in the same way as it did you.

Also to point out other influences of which many may not be aware, such as how even normal sound can damage ears during (and for a long time after) certain ototoxic ABX treatment.

I have seen your thread and dilemma but did not know how to respond - or have the energy to organize a thoughtful post.

But, here's a try.

1. While the tinnitus may seem permanent, it may not be. We still have much to learn.

Someone above mentioned I found Berberine helpful for tinnitus. Actually, it's so helpful to reduce pain in body and settle down seizures & all my trigger finger joints. But it does not do much for tinnitus.

What herb DOES help calm tinnitus for me is ANDROGRAPHIS - it is sedative in nature and also helps support adrenals (which can cause tinnitus, too, when stressed).

I have to stop now so maybe at least this much may be of help. Take care

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/119089?#000000

ANDROGRAPHIS paniculata - LINKS SET
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Oh, not quite able to stop. I see that you mention

" . . . had a stash of norco that I handed over to him today. Now I have to ask him for pain meds. . . ." (end quote)

Norco (acetaminophen and hydrocodone) - sadly, that is very ototoxic, too. And so are many pain meds.

Now, I know hearing this can be hard -- yet there ARE ways to address pain with things that are not ototoxic. The tinnitus thread above has a section about that. I really have to stop now so I really hope this can help you switch to a path where what you take is not going to further cause trouble with ears.

Take really good care.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
While it's no guarantee, it may be of help and should always be on board when ANY ototoxic Rx / OTC product is taken:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT - which can also be EAR / VESTIBULAR SUPPORT

"How to find a naturopathic doctor" also here.

Especially where any Rx is being used, it makes me a little uncomfortable to suggest any herbal supplement due to possible contraindications / interactions.

A LL ND would know best now to proceed safely (and also know better what all you've been through).
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
http://www.michnd.org/

Michigan Association of Naturopathic Physicians


http://www.michnd.org/find-a-doctor/

Finding a ND


While you say lyme is no longer a concern, it may still be best to find a LL ND for various reasons. You can cross check names from above group with what you might learn from folks here:

http://www.mlda.org/

Michigan Lyme Disease Association
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
One more question.

Whey you say "when I close my eyes I just hear screaming." (end quote)

Now, you may mean that when distractions are eliminated and you try to rest / sleep, tinnitus is much worse. And that is often the case. That's also why ear plugs can be so hard to wear at night.

Some causes of this can be calmed, if liver / adrenals are involved - though it can take time. Electronics in the bedroom, too, can do this.

And, as mentioned above, ototoxic Rx / OTC can cause the nerve fibers to "ring" so to speak.

But there are ways to help regenerate the liver / kidneys & ear nerves & adrenal function that are so connected.


But you may be talking about a different reason.

If you brush your hair, do you hear the bristles inside your head?

Seriously, if when you close or move your eyes, sounds in head get worse, that could be due to something I also have called

SCD - Superior Canal Dehiscence

Some have regained full lives with a surgical technique. Most doctors, even ear specialists have no clue about SCD. And very - very - detailed CTs are required that most do not do correctly.

The SCD detail is in the Tinnitus thread above. I'm just toast so just can't sort that out to cut & paste right now. Sorry.

Whatever is all going on, there may well be some way for it recede. Really. Even just stopping the ototoxic Rx might bring tinnitus relief around faster than one might think.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
this may not be the place to write this but i feel so mad that sideways is suffering from severe tinnitus when is prescribed a drug that causes it...how can docs do stuff like that when we are supposed to have such a wonderful health care system...thats pretty basic

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
lpkayak,

Lyme, itself, can cause tinnitus, though so it's got to be addressed somehow. Still . . .

Hundreds of Rx are ototoxic. So are many OTC products, including acetaminophen.

Most doctors are clueless about most ototoxic drugs -- and also how the liver can be key to the extent of damage they can cause.

The high noise volume of many of our machines are also to blame.

The book below also includes other substances as well.

It's really important that everyone have this book. All the information in this is simply not available on line, it's too vast to list all the drugs & other agents. However, his websites listed in the Tinnitus thread do go into some detail.

Take a look inside this book, even just at the Table of Contents. It's an eye opener.

http://www.amazon.com/Ototoxic-Drugs-Exposed-3rd-Edition/dp/1935939009

Ototoxic Drugs Exposed . . . (3rd Edition)

- by Neil G. Bauman, 3rd edition

For a quick look at his earlier work so the number may vary:

http://www.hearnet.com/features/articles/Ototoxic_Drugs_Exposed.pdf

bottom page 2:

"There are at least 743 drugs that are known to be ototoxic. Here are just 84 of them: (list starts on page 3)
-

[ 01-16-2015, 12:42 AM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
And, it is reasonable to hope that healing of the ears can happen. Again, a ND who is familiar with lyme and all that involves / involved for a patient is the best kind of expert I can think of for what can help start the healing process

and how to treat symptoms along the way, especially to reduce inflammation & discomfort.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
geronimog
Member
Member # 34875

Icon 1 posted      Profile for geronimog     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways,
-Indeed, Norco is considered the most ototoxic of all opioids.
-Something that comes to mind that might help with your problem is lymphatic drainage. There are massaging techniques used around the ear that stimulate flow of the lymph fluid. If there is toxic build-up in your inner-ear, this might expedite its elimination. Here's the instructional video:

https://www.youtube.com/watch?v=QA-wi0d7-Ro

Thanks so much, Sideways and Keebler, for bringing this information to my attention. I've been having some hyperacusis of late with the meds I've been taking and really needed to read this thread and do some further research.

My hyperacusis started shortly after taking Plaquenil (hydroxychloroquine). Interestingly I noticed it was really only a problem while I was taking higher doses of doxycycline.

So just a few minutes ago I serendipitously stumbled onto the following:
"The ototoxic effects of quinine may be potentiated by doxycycline, an antibiotic, which is sometimes used with quinine in the prophylaxis or treatment of malaria. On its own, doxycycline is not thought to be ototoxic."

From:Textbook of Tinnitus
By Aage R. Møller, Berthold Langguth, Dirk DeRidder, Tobias Kleinjung

Also, following that quote the authors mention the use of plasma expanders and steroids as possible therapies for the problem.

Posts: 65 | From Montreal | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Geron...im glad this helped you. We havent heard from sideways i awhile but sure hope she is ok and healing

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
hopeful4
LymeNet Contributor
Member # 8486

Icon 1 posted      Profile for hopeful4     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways, sending lots of encouragement to you! Take care, hope you feel better soon.


Robin123 – If PEMF and SOTA can help, I wonder if a TENS unit can alleviate tinnitus and hyperacusis.


Has anyone tried a TENS unit?

Posts: 873 | From WA | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
Mvdr
LymeNet Contributor
Member # 43034

Icon 1 posted      Profile for Mvdr     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sideways..praying for healing and relief for you.
Posts: 143 | From Pittsburgh | Registered: Jan 2014  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
geronimog quotes above from Textbook of Tinnitus:

"Also, following that quote the authors mention the use of plasma expanders and steroids as possible therapies for the problem." (end quote)

Vital note: that book is right about some things, but - about steroids - it's wrong. Just wrong. And so are many doctors where steroids are concerned. Even ear specialists are wrong about this.

Steroid do not heal. Remember that. Steroids can also rob the body's bones of vital minerals and cause them to fail us down the road.

Steroids are NOT a good idea.

They can make tinnitus and other vestibular symptoms so much worse for anyone who is dealing with any kind of chronic infection or immune dysfunction.

And, really, anyone with any kind of ear / vestibular issues could be dealing with a chronic infection &/or immune dysfunction.

Steroids are how many get into trouble with their ears in the first place.

There are many far safer ways to address inflammation (for which steroids are - so sadly - too often prescribed).

sideways, even if you think lyme has resolved, with issues as described, there could very well be other chronic infections lingering - and/or steroids could bring lyme to the forefront again.

You likely remember all this so posting also for anyone new to all this:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
-

[ 01-19-2015, 05:31 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just wanted to let everyone know that I had a long conversation with sideways today...

She is having a rough time but hanging in there, and has some different options to think about trying.

She said she appreciates the concern, and will read and reply to this thread sometime soon, when she is able (among other things, it is difficult for her to read lengthy passages due to her current visual issues)...

Posts: 1652 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Phioph - Thanks so much for reaching out to sideways.

Everyone else who responded on this thread or sent p.m.'s - Give yourself a pat on the back. In my opinion the board did a really good job in handling this urgent situation.

Any more recent updates from sideways?

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
LisaK
Frequent Contributor (1K+ posts)
Member # 41384

Icon 1 posted      Profile for LisaK     Send New Private Message       Edit/Delete Post   Reply With Quote 
any news?

her mailbox is full.

__

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

Posts: 3458 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.