posted
Hello, i have been dealing with odd symptoms on and off for the past 6 months now and no doctor seems to have an answer for me. It started in late summer where i seemed to have a real bad summer virus that didnt want to go away, it lasted from late august to late October. Shortly after that i developed this severe chest and rib pain that i brushed off as inflammation from all the coughing i did while sick or pulled muscles. After a few weeks the pain got extremely severe and i experienced an incident where i almost fainted, i was rushed to the ER and they didnt find anything wrong. After that i had some test done24 hour holter monitor and echcardiogram. The echo came back normal but the holter showed that at certain periods of rest my heart rate dropped to as low as 35 bpm. This was dismissed as me just being young and athletic. So all was good i assumed then a few days later i woke up with the entire room spinning. I went to my doctor was refered to a neurologist who dismissed me as suffering from anxiety. Gave me some meds and sent me home, i believed i seriously was suffering from anxiety so still suffering with this constant dizziness i made efforts to try and relax. About a week later i started experiencing auditory issues. Kept feeling ear pressure fullness fluid like feelings as well as hearing loss.Convinced i was not suffering from anxiety i sought out an ENT who addressed my issue by ordering a series of test the 1st being an MRI of the brain. I got the MRI done convinced that it would come back normal and i would be given some type of medication to help with whatever issue was causing me to be dizzy and off balanced. The MRI came back and showed a T2 hyperintense lesion near my corpus collisum suggestive of a demyelinating disease. Basically i was told i have MS, i underwent complete diagnostics for MS including MRI of the spine, tins of blood work and an awful lumbar puncture that was by far the worst experience. All tests came back negative and i was told to just follow up with an MRI in the next 6months but for the most part i was fine. Relieved by that news but still feeling constantly dizzy as well as a host of bizzare cognitive issues such as short term memory loss, confusion and inability to concentrate, i went back to the ENT and had a VNG test done. Convinced i would finally get some answers the results showed 17% coleric weakness and 20% preponderance in my left ear which is not enough to be clinically significant of anything. At this point my symptoms took a more disturbing turn as i started experiencing visual disturbances such as light, spiral shapes, dark spots and blind spots. At this point in time im already feeling like im losing my mind, was told that these symptoms are common with Migraine associated vertigo and i should seek out an Otto neurologist. So thats what i did, just so happens theres a long wait to see one of them and the earliest i was able to get an appointment was Feb 1. It was 3 weeks ago that i scheduled that appointment and throughout those 3 weeks my symptoms have taken yet another disturbing turn as now i have been experiencing muscle spasms, pulsing sensations and weakness in my arms and legs, as well as intense bouts of fatigue that seem to come out of no-where. This has lead me to believe that i do have MS they just must of missed it during the diagnostics, until someone suggested Lyme as they are a Lyme sufferer and our symptoms are very similar. So i am a few days away from seeing this Otto neuro and am just dumbfounded by all the odd things that have been occurring in recent months.
Sorry for the long post and the apparent venting but i am seriously lost and at wits end. Ive missed so much work and i dont seem to be getting better at all. The only thing i feel has improved is the dizziness and even that is by a slight margin everything else seems to be getting worse or new symptoms seem to be getting added to the pile.
Any information or opinions would be greatly appreciated.
IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
welcome, and sorry I must break up your post. We with neurolyme cannot read large block of print.
Hello, i have been dealing with odd symptoms on and off for the past 6 months now and no doctor seems to have an answer for me.
It started in late summer where i seemed to have a real bad summer virus that didnt want to go away, it lasted from late august to late October. Shortly after that i developed this severe chest and rib pain that i brushed off as inflammation from all the coughing i did while sick or pulled muscles.
After a few weeks the pain got extremely severe and i experienced an incident where i almost fainted, i was rushed to the ER and they didnt find anything wrong.
After that i had some test done24 hour holter monitor and echcardiogram. The echo came back normal but the holter showed that at certain periods of rest my heart rate dropped to as low as 35 bpm.
This was dismissed as me just being young and athletic. So all was good i assumed then a few days later i woke up with the entire room spinning.
I went to my doctor was refered to a neurologist who dismissed me as suffering from anxiety. Gave me some meds and sent me home, i believed i seriously was suffering from anxiety so still suffering with this constant dizziness i made efforts to try and relax.
About a week later i started experiencing auditory issues. Kept feeling ear pressure fullness fluid like feelings as well as hearing loss.Convinced i was not suffering from anxiety i sought out an ENT who addressed my issue by ordering a series of test the 1st being an MRI of the brain.
I got the MRI done convinced that it would come back normal and i would be given some type of medication to help with whatever issue was causing me to be dizzy and off balanced.
The MRI came back and showed a T2 hyperintense lesion near my corpus collisum suggestive of a demyelinating disease. Basically i was told i have MS, i underwent complete diagnostics for MS including MRI of the spine, tins of blood work and an awful lumbar puncture that was by far the worst experience.
All tests came back negative and i was told to just follow up with an MRI in the next 6months but for the most part i was fine.
Relieved by that news but still feeling constantly dizzy as well as a host of bizzare cognitive issues such as short term memory loss, confusion and inability to concentrate, i went back to the ENT and had a VNG test done.
Convinced i would finally get some answers the results showed 17% coleric weakness and 20% preponderance in my left ear which is not enough to be clinically significant of anything. At this point my symptoms took a more disturbing turn as i started experiencing visual disturbances such as light, spiral shapes, dark spots and blind spots.
At this point in time im already feeling like im losing my mind, was told that these symptoms are common with Migraine associated vertigo and i should seek out an Otto neurologist.
So thats what i did, just so happens theres a long wait to see one of them and the earliest i was able to get an appointment was Feb 1.
It was 3 weeks ago that i scheduled that appointment and throughout those 3 weeks my symptoms have taken yet another disturbing turn as now i have been experiencing muscle spasms, pulsing sensations and weakness in my arms and legs, as well as intense bouts of fatigue that seem to come out of no-where.
This has lead me to believe that i do have MS they just must of missed it during the diagnostics, until someone suggested Lyme as they are a Lyme sufferer and our symptoms are very similar.
So i am a few days away from seeing this Otto neuro and am just dumbfounded by all the odd things that have been occurring in recent months.
Sorry for the long post and the apparent venting but i am seriously lost and at wits end. Ive missed so much work and i dont seem to be getting better at all.
The only thing i feel has improved is the dizziness and even that is by a slight margin everything else seems to be getting worse or new symptoms seem to be getting added to the pile.
Any information or opinions would be greatly appreciated.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
okay,
suggest you download & print the green Lyme booklet from http://lymepa.org
Will help you understand tick borne diseases...not just Lyme.
last pages of symptoms lyme & tick diseases can cause.
Keep reading & researching. MS is just a syndrome type disease... I was DXd MS in 1988...turned out to be lyme & other tick infections.
look into CCSVI (google it) another possible reason for brain lesions.
Good luck.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Ah, yes, the old specialist merry go round. I remember it well.
So, has anyone ever tested you for lyme? All of those symptoms you describe could be tickborne diseases (lyme and/or coinfections). CT is lyme central. Seems like negligence that no one mentioned lyme to you.
Find yourself a lyme doc, get some testing, be evaluated. The testing is not very good, but worth doing anyway, especially at better, more specialized labs. Sometimes labcorp even produces a positive lyme test. But get tested with a lyme doc, because anyone else might brush off a false negative, or even a positive!
Time to get off that merry go round and head straight for a lyme doc. If you don't have it, you can then go searching for some other cause.
The earlier a person gets treated, the more successful the outcome. So, don't waste any more time.
[ 01-27-2011, 09:19 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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I've complained of chest wall and rib cage pain for years.
Was told it was due to my lean, thin build as a woman we are more prone to it.
Anti-inflammatories and heating pad to ease the pain.
I suffered w/ severe headaches daily for almost two years.
Was told it was migraines without aura.
Then I started having left sided numbness and tingling along with weakness in my arm.
With this came mixed up words with my speech and typos when writing or typing.
I thought for sure I had a brain tumor.
My legs felt like noodles.
MRI of brain normal and MRA of neck normal.
Started hearing swooshing pulse in my ears and my ears always felt plugged along with feeling off balance and vertigo when in bed at night.
Diagnosed with eustachian tube dysfunction.
I thought the constant ringing in my ears (like having a television on) was normal. Evidently not, diagnosed with tininitus.
My daily headaches went away on their own, but reoccur every so often.
My rib pain/chest wall pain comes and goes in cycles.
I haven't had any fatigue issues in quite some time.
Definitely keep that appt. Feb 1.
Funny that you say more symptoms keep adding to the pile.
That is very true.
That's what made me beg my dr. to do every test possible. I was falling apart every month with something new.
You will find this web forum awesome. A great bunch of people who have given me more advice than my own dr.
Keep us posted.
Posts: 412 | From Virginia | Registered: Sep 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
DDEC2, Sorry you're going thru all this. It's tough alright, but if you figure out that you do have lyme, you've come to the right place for support and loads of useful information. Welcome.
posted
To co-sign everything that has been posted by others in this thread, I also have been through the misdiagnosis wheel. Find an LLMD in your area that is recognized and treats CO-INFECTIONS. This is a must.
Do not bother going back to your GP, or any doctor who is not an LLMD. You will not get the proper evaluation otherwise.
If there is one positive, your story sounds very familiar. I'm confident once you find an LLMD, you will receive the correct diagnosis.
Posts: 829 | From MD | Registered: Dec 2009
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IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Since your symptoms started with a virus, you could be battling a virus instead of a bacteria (Lyme is a bacteria). Possible that Chlamydia Pneumonia is a factor too because of all the coughing you had.
I would look into those possibilities first. Maybe visit an Infectious Disease doctor or have your PCP run tests for coxsackie B, Cpn and other pathogens they can think of.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
DDEC2:
Your story sounds almost exactly like mine. You and I had very similar symptoms and experiences.
I, too, had the dizziness (worst symptoms), tinnitus, ear fullness, neuro issues, memory loss, brain fog, visual disturbances, floaters, muscle spasms, heart issues, etc, etc, etc. Your symptoms were exactly like mine. I also had GI stuff.
I went to my Primary doc first, then a GI doc, then an ENT (who tested me for lyme..negative.) My ENT results were almost identical to yours. Then I went to a neurologist. Guess what. Lesions on MRI and I had an abnormal spect scan.
I was told it was anxiety, depression, stress, etc...until the MRI and SPECT were abnormal. Then they were stumped.
Found my LLMD and tested positive through IGENEX. I've been in treatment since may and guess what...my MRI from december (7 months into treatment) was 100% NORMAL!! My spect is still abnormal, but is greatly improved. I'm 95% most days and am only dealing with a few mild symptoms.
Up to you whether or not to still go to the Neuro-Otologist. I don't advise it as they are stupid when it comes to lyme. They'll probably say MAV, which I don't believe is an actual disease (I think MAV = lyme.)
Definitely get an LLMD ASAP and don't stop until someone gives you an IGENEX test. I'd say based on your MRI, non-MS diagnosis, and symptoms, you have lyme & co.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Oh yeah...go to www.ilads.org and download Dr. B's treatment guidelines (see treatment guidelines.)
Watch the 2009 documentary "Under Our Skin" (www.underourskin.com and on youtube.) You can rent from your local library.
Read "Cure Unknown" from Pam Weintraub.
You can get well.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Camp Other
Unregistered
posted
I think getting a good overview of Lyme disease and coinfections as well as the history of how they have been misdiagnosed and undertreated is important.
IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Your story and progression of symptoms could be my own. Let me know when/if the neck and head pain starts (if it hasn't already).
MS is a rule out diagnosis - the 'let's do an MRI and lumbar puncture and check you again in 6 mos.' Equals - 'We don't know what's wrong with you so let's give you a label'. There is no magic test that says 'yes, you have MS'. They watch your lesions over time.
Please please find an LLMD. Post under the 'Seeking a Doctor' section here. Don't be stupid like I was and do the specialist shuffle for almost a year while I progressively went downhill.
I spent thousands on copays for docs and useless scripts and tests covered by my insurance plan, because I was concerned about cost bc the LLMD nearest me didn't take insurance. What an idiot I was. The LLMD who saved me charged about $300 to see me the first time and followups are less than most GP's charge. Penny wise, pound foolish.
Beg steal and borrow to get to one if you have to (and many charge way less than most 'specialists) . The clock is ticking and this only gets worse without treatment.
Keep reading here - you will find your life story repeated ad nauseum, I'm afraid. There are links at the top of the board 'for newbies'. Read up on 'coinfections' such as Bartonella and Babesia (there are many other infections you can get from a tick).
There is hope. People do get better. And I'm one of them.
BTW - has insomnia kicked in yet?
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
DDEC2, Your story is exactly like mine almost identical. I started with heart symptoms, anxiety, 'virus', dizziness/vertigo.
I saw ENT, 4 neurologists, had 2 head CT's, 1 MRI of head, had thyroid workup ect... Was told it could be the beginning of MS or post viral encephalitis (Chronic Fatigue from 'virus') I even got tested for Lyme at my request and it came up negative.
Finally, I saw an LLMD and it was LYME!!
I never had a rash from a tick bite and Im not sure when I got it. I did not believe I could have gotten it. I really suggest seeing the LLMD. I wish I would have had someone tell me this a year ago instead of suffering for a year and 1/2. Good Luck to you
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
DDEC2--there's a lot more to this than "a tick bite" as you'll see. If you see a LLMD, they do all the appropriate testing and you do not have Lyme or its relatives, I'll be shell shocked.
I saw so many specialists, it would make your head spin.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Oh, and BTW, please do not take any steroids until you've educated yourself and you are absolutely 100% positive that there is no way you have lyme, according to blood and a clinical diagnosis by a real LLMD. Steroids can cause irreversible damage.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
People in city environments often get lyme disease from mice that are in apartment buildings. The ticks get on the mice and the mice bring them into the apartment buildings, right into your home.
I know a guy who once lived in a house with mice. When he killed them, he saw a lot of ticks on them. His wife never went outdoors. She got lyme disease. This is most likely how she got it.
Mice are a major player in the tick life cycle. So, that is how people in high rise apartment buildings in New York City get lyme disease. Not uncommon there, by the way.
Birds, squirrels, and many other animals also carry ticks.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi, Sorry been there also. Not easy. You may have co-infections which like mine started with viral meningitis, never same again was really being of Lyme. Flies carry it according to new studies & sure mosquito`s do since think Bab`s which is cousin of malaria. MS is also linked & we all share many same symptoms. Same as FM &Cfids,Parkinson`s,RA. Many Drs. saying auto immune is Lyme. Cause & effect for everything. Do not just wake up 1 day body turns on you. Do not believe would do that. Needs Cause which this would sound right that we share most same symptoms. I am unable to find good Dr. to treat on my insurance in Late stage now not fun. Take Care, Good Luck, Huggggssss, to all in Need....Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
DDEC2, can you imagine how I felt, sick for 10 years, going from doctor to doctor all that time, including some of the best doctors and places like Johns Hopkins, and nobody ever mentioned lyme disease to me?
It took me 10 years to get diagnosed. 10 years of hell.
Now, the real kicker is that the first internist I went to at the very beginning (known as top notch, with a 3 month wait to get in with him) asked me if I had ever been bitten by a tick. That tells you that he was thinking lyme disease.
I said, "No, but I get ticks on me all the time in my back yard."
So, with that answer, he did NOT test me for lyme disease. Now, how do you think I feel about that? What kind of thinking is it that since the patient gets ticks on them all the time but never saw one bite her, then she does not need a lyme disease test!!!
With that, I was consigned to 10 years of hell until an endocrinologist thought of lyme and tested me for it 10 years later.
Many, many times after my diagnosis I felt like writing to that first doctor and telling him that he needed to start testing people for lyme disease when their symptoms sounded like lyme. But, I was too angry to have done it the right way. I was furious with that doctor. I suffered unbelievably because of his decision not to test me for lyme disease.
This is what we are up against with this disease. Unless you appear at the doc's office with a large bulls eye rash or an attached tick, they won't think lyme disease. One doctor (a psychiatrist who got lyme disease) has written that she went to the doc with the tick in the center of her red rash, and was told by the doctor that that black dot was not a tick! So, she was consigned to hell for some further period of time.
People are also told that their rash is a spider bite and many other things.
Even after my positive lyme test by LabCorp 10 years later, I was told by an infectious disease doctor that I did not have lyme since I never had a large red rash. The doc said the rash had to be at least 3 inches in diameter. I never had any rashes that big, so I didn't have lyme according to her.
I also had a neurologist declare that I did NOT have lyme disease in spite of my positive test because he had me go through a lumbar puncture and it was negative for lyme.
That is how I found the lyme support groups. The establishment's medical doctors refused to treat me with my positive lyme test. Can you believe that!
This is the state of affairs with this disease. Lyme is in the midst of a medical controversy. It has been going on for nearly 30 years or so. Here is a short video you can watch that will explain it a little.
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
With this disease, you must find the absolute best lyme doctor you can afford. You must persevere. It can be difficult to find a doc who will take you seriously and who knows how to get you well.
Many doctors treat lyme disease, but only a few know how to get rid of it for a person. The doc is the key to getting rid of this disease.
In March, it will be 6 years since I completed my lyme disease treatment and I am still symptom free, enjoying my life.
Besides lyme disease, I also had babesiosis and bartonella. The tick often gives you more diseases than just lyme disease. These other diseases are called lyme coinfections.
So, I just want you to know that what has happened with you so far is typical for this disease. We have heard stories like yours and mine over and over on this board for years. I have been hearing them and reading them for 7 years.
Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
DD--the lyme test is just a blood test. If insurance pays, go for it. Just more info for the lLMD. Your doc should do a CBC, there are other markers that they look at, i.e. low white blood cell count, high sed rate, liver numbers. All of this information is good to have. You might as well learn this now, because you are the major component to getting yourself well, not the guy/gal with the plaque on the wall. just as anything else, not all LLMD's are of the same quality.
Good luck and keep us posted.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Only one word of caution..if your lyme blood test comes up negative, it still can be lyme!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Thats why id rather wait til i see the LLMD, cause if the one that was ordered comes back negative the issue will be dismissed and ill probably be misdiagnosed again.
On a plus note the otto-neuro said that the brain lesion i have looks nothing like an MS lesion.
. . . may include demyelination or loss of neurons leading to atrophy.
Neurologic complications in earlier reports were said to occur in 20% of LD cases. In my experience, and as published by Dr. Logigian, 90% of patients have one or more of encephalopathy, cranial neuritis or psychiatric changes.
Early in the course of LD, these problems may be absent or muted, but eventually intrude and can become dominant aspects of LD.
Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP).
The medical literature is quite emphatic that MRI does not reliably distinguish between MS and LD because there is too much overlap in their supposedly distinct appearance and location of plaques.
Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination.
In Miklossy's study above, senile plaques stained avidly for Bb spirochetes.
Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that LD is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of CNS tissues).
Dr. Coyle has documented the presence of antibodies to Bb in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of LD.
Both MS and LD are associated with sinusitis (Lancet, 1986). Dr. Leigner has reported a case of LD which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of LD.
The symptoms of both LD and MS can be aggravated if the patient takes a hot bath.
Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy.
. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't read much of any of these posts right now, just two tired but two points jumped out for my eyes. I think you wrote something about an otto-neuro doctor. If that is either an otoneurologist or a neurotologist, you may find some detail here as many with lyme have all kinds of vestibular effects from Bb. ------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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