Lyme Disease — Cause of My Tinnitus, Hyperacusis, and Inner Ear Issues

[Coyotesheaven]

So today I was diagnosed with Lyme disease, something I probably got back in May 2015 from playing in the woods out near Philadelphia. Can't believe that I was tested twice last spring and had false negatives.
Now I have an explanation for why every loud noise, every muscle movement, every everything has always done something to my hearing and T volumes, as well as why I had migraines and vertigo and dizziness from time to time.
It's come as a relief, but I am also really frightened, namely because I am definitely in stage 3 lyme disease now, and who knows how much damage it has done to my nervous system and my inner ears and how much I can reverse through antibiotic therapy. But I try to stay positive now that I at least have a name to this problem.

Anyone else out there who has Lyme disease and who would like to share their experience?
I definitely want to build an information hub on the relationship between lyme and inner ear problems, because I think it often goes unnoticed and is not really considered. I myself never seriously considered lyme because there are few stories of people with T or H and lyme, and even fewer of people with hearing loss and lyme.

 

[Sen]

how were you diagnosed?

 

[The Red Viper]

how were you diagnosed?

Second that. Was it a blood test?

 

[Coyotesheaven]

@ The Red Viper

It is not 100% confirmed yet, more like over 80%. I visited a Lyme Literate doctor and going by my symptoms and the fact that they developed around the time I was in prime tick habitat, she said I had a very high chance of infection. They were confident enough that they wanted me to start antibiotics asap.

I did have 2 lyme tests done previously, an IGeneX test and a Lyme titre test when I was getting bloodwork for ear related conditions. Both came back negative, but both tests also have high false negative rates.

I just had another 15 or so blood tests done to re-look for the lyme disease, co-infections, antibodies, immune system activity, etc. If something turns up there then it's sealed.

 

[The Red Viper]

@Coyotesheaven

Be careful with Lyme. While you may have undiagnosed Lyme, I would be wary of a pure clinical diagnosis. Long-term antibiotics aren't good for the body. I would have to be really, really sure that I had Lyme before I took really strong antibiotics. If the IGeneX test came back negative I would be suspicious of Lyme. It tests many bands and is probably the best Western blot test available. There is a new test from a company in Northern Virginia that directly tests for the Lyme bacteria, not just antibodies. It's a simple urine test. Ask your doctor about it: http://www.ceresnano.com/nanotrap-lyme-test

 

[Coyotesheaven]

@ The Red Viper

Thanks for the advice.
I know what you mean. I'm terrified of antibiotics (I took them for strep once and ended up with a 3 month stomach flu) and would hate to mess up my inner biomes like that.
I don't really know if it was an IGeneX test; it was just one of the newer tests.

The LLD took 15 blood samples for 15 new tests, and I will get my results back Oct. 11; then I will really know for certain. As of right now thought, they are 90% sure I have an infection and 80% sure it is Lyme, so that's pretty high. Then again god knows how they calculated those statistics (is this a probability?). But it's telling that I should at least do something in the meantime.

Right now I am probably going to start with oregano oil, perhaps a very small amount of ozone therapy.

 

[Sen]

I would be skeptical of anything other than objective evidence for lyme disease. From what I can tell, lyme can cause the same symptoms as a million other things.

It also doesn't come as a surprise that a lyme clinic would be quick to diagnose you with lyme. A pattern I've noticed is that private practices will frequently reach the conclusion that you have the ailment that they just so happen to treat, provided testing doesn't reveal any other obvious cause. There's good money in treatment.

I've had a chiropractor tell me my problems were caused by my neck and back, and that she could fix it, but I would have to see her regularly. I've had an orthodontist tell me my problems were caused by TMJ, and he could fix it, as long as I bought a $2500 jaw splint and attended appointments for regular adjustments.

People aren't above making money off of your suffering and desperation.

 

[Ecip]

I often wonder if I have Lyme disease, but my doctor doesn't feel any of my symptoms and a lack of the typical tick infection mark, and nervous system issues, has him believe it's not it.

 

[Ring Ding]

Could be Mercury poisoning as well. I think That's why I have all these problems. I'm chelating the mercury out of my body so we will see what happens in another year from now. I only just started trying to remove it from my brain. I'm sure there are deep stores of it in there going back to when I first got my dental fillings as a kid.

I had a few lime tests and most came up negative and then I had one that showed like two bands on it so it was sort of suspect but I have since heard you need to see a stronger result than that. Anyway mercury removal is working slowly. I was pretty debilitated last year and this year I'm doing much better. Still got a ways to go though.

I find it interesting that Autistic kids seem to have a lot of these hearing issues. Autism is certainly linked to toxicity and mercury so I guess it makes some sense.

 

[Coyotesheaven]

@Sen

That's very true for any medical practice and I have been trying to keep my wits about me. They wanted me to start a lot of therapy immediately which I declined to do there, so it is obvious they were after my $$. I still don't have all the tests back either.
But I've just about explored every other avenue and they have found nothing wrong with me so there you go; just up and down hearing, TMJ dislocation and very tight muscles issues that develop out of nowhere, circulation issues, and migraines that I never, ever suffered from before. I was also in prime tick habitat only a couple of weeks before I had TMJ, neuralgia, sudden hearing loss, and migraines pop out of nowhere. Out in the woods and playing in the streams and running around nekkid (not lying about that part) near Philadelphia. It's an epidemic there.

 

[Coyotesheaven]

@Ecip

Oh BS nearly half of people don't get the bulls-eye rash, so I don't get the doc. there.

Lyme is a variable disease, and doesn't necessarily need to get into your nervous system. But it should be multis-symptomatic for the most part, not just a few isolated symptoms. But you never know. Where you in tick territory at any point?

 

[Ecip]

@Ecip

Oh BS nearly half of people don't get the bulls-eye rash, so I don't get the doc. there.

Lyme is a variable disease, and doesn't necessarily need to get into your nervous system. But it should be multis-symptomatic for the most part, not just a few isolated symptoms. But you never know. Where you in tick territory at any point?

My whole life.. Lol. Born and raised in Switzerland, then moved to Canada. Doc thinks that if I was infected while still in Europe that the neurological signs and symptoms would be quite evident. I suppose that's probably true..

 

[Coyotesheaven]

@ Ring Ding

Interesting. I had Mercury poisoning in my youth, and it was causing central balance problems they believed. So I chelated for a year or so and then supposedly I was fine. Wonder if it may have came back by some means?

I'm not autistic but many people in my birth family are aspies. I inherited some of the traits, genetically. I had dog ears before this crap started happening, also genetic, but no ongoing problems with my ears before August 2015.

What are the sources of Mercury poisoning? I know seafood is one. I eat a lot of sushi, which sometimes contains tuna. But I developed problems long before I was a regular consumer of sushi (that started this summer).

 

[Coyotesheaven]

@Ecip,

Yea, I think it would have done a lot of neurological damage by now if it had been lyme. Everyone's immune system is different of course, so some can live with a chronic infection and have fewer symptoms. But generally it gets worse as the years go by. I am probably lucky to have caught it 1.25 years in.

 

[The Red Viper]

@ The Red Viper

The LLD took 15 blood samples for 15 new tests, and I will get my results back Oct. 11; then I will really know for certain. As of right now thought, they are 90% sure I have an infection and 80% sure it is Lyme, so that's pretty high. Then again god knows how they calculated those statistics (is this a probability?). But it's telling that I should at least do something in the meantime.

Blood tests shouldn't take that long. For example, a standard Western blot takes two days. There's something up...

 

[Coyotesheaven]

@ The Red Viper

I was wrong the tests come back this week.

 

[Fairy]

I am sorry about your Lyme Disease. I hope that are doing well.
Smiles. I was surprise by your results. Maybe you will get well. I hope so.
Your case is always in my heart. I used to live with the tics to. I know what you are
talking about. They are over the place.

 

[Fungus]

Well, here's hoping you don't have it....Lyme Disease is nasty. Hopefully the impressions so far will be proven wrong.
Tics are getting to be a great problem over here,too, as the winters get milder. I've removed them from my dog and cats as well as treated them on my sheep.

Fungus.

 

[Coyotesheaven]

Oh well never mind the tests came back negative for lyme. I was so hopeful that I finally had an answer to my problems but nope.

They do think something is wrong with my immune system, however, so perhaps that will lead to some answers.

 

[Ian Mac]

acupuncture

 

[The Red Viper]

That's great news that it's negative. Late stage Lyme disease is no joke.

I feel your pain insofar as you don't have a definitive answer. However, do not become so desperate for a diagnosis that you'll take any diagnosis without solid evidence. Good to know that the LLMD used objective tests, but I don't like the fact that they wanted to start you on antibiotics immediately.

 

[Coyotesheaven]

@The Red Viper

Yea I was not too thrilled about that either, but it is at least a relief that I do not have to live with chronic lyme.
I put off taking the antibiotics until my ear symptoms spun out of control last Friday, and then I thought "well, they say 90% chance I have one of the tick diseases to might as well". And then 2 days later the antibiotics start exacerbating everything (I'm off them as of yesterday). My body is just so sensitive to anything that's put into it these days it's gotten ridiculous; I had the worst reactions to topomax, the worst reactions to propanerol. I guess my body just hates meds. The only thing that my body will tolerate is the very small amount of klonopin I take every day.

Now I guess I need to consider Meniere's or something autoimmune, potentially vascular, or maybe it's just migraine attacks as I was told before, which are resisting treatments and lifestyle changes. Hopefully I don't have to start from ground zero again.

On the bright side, I go over all the other blood tests tomorrow with the LLMD; they didn't tell me the rest of the results so there is still a chance that I have one of the co-infections, a virus (herpeees), or that my autoimmune system is out of control. I hope it is the latter because then there are solutions.

 

[Lewis Thomas]

Thanks for sharing your experience with this disease. It will be beneficial for many people. Ticks are one of the most common pests that transmit Lyme disease. So, it is important to keep you home tick free and you can do this with the help of professional CT tick control services.

 

[lolkas]

Oh well never mind the tests came back negative for lyme. I was so hopeful that I finally had an answer to my problems but nope.

They do think something is wrong with my immune system, however, so perhaps that will lead to some answers.

Did you do Igenex or ELISA ?

 

[linearb]

if you go to enough "lyme literate doctors", you will end up getting diagnosed with Lyme disease.

@lolkas she did Igenex, which was negative.

 

[lolkas]

if you go to enough "lyme literate doctors", you will end up getting diagnosed with Lyme disease.

@lolkas she did Igenex, which was negative.

if igenex was not able to catch any strains at all - Lyme is off at this point. LLMD is needed to get Igenex test and compare to symptoms. Testing is concrete evidence if you have it(positive result), symptoms just evaluate severity and assist in planning treatment plan.

I am truly sorry that this is still a mystery for @Coyotesheaven