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» LymeNet Flash » Questions and Discussion » General Support » UGH! Friend thinks is mernier's not lyme because symptoms "cycle"

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Author Topic: UGH! Friend thinks is mernier's not lyme because symptoms "cycle"
lymegal23
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Ok so heres a run thru of the story.. My co worker has been telling me shes been not feeling good in cycles for about two years. She said that she stars feeling sick in the winter and shes ok in the summer. Her symptoms are vertigo, ringing in the ears that can last up to 10 minutes. dizziness where she sees the room spinning. very bad insomnia where shes lucky that she even gets 2 hours of sleep a night. Her eyes look swollen and puffy. She says some days she can't get out of bed but then some days shes ok. she said it goes in cycles. She was tested for lyme by an ID doc and he told her one test came back pos and the other came back neg. therefore he doesnt think she has lyme. plus she said she was on doxy for a few years for acne so she doesnt think she can have lyme. I told her doxy at a low dose is pretty worthless and that she could be co infected. She went to three Ear Nose and Throat docs and theyve all diagnosed her with mernier's. she said all the test pointed to that. altho last time I checked theres really no definitive test for mernieres. they just diagnose it if theres no other possible reason for symptoms.

I was hoping shed go to my lyme doc. but now it seems that she really thinks is mernieres. she said she thinks that because she cycles her symptoms in days. a few pretty good days and then a few really crappy days. she said if she had lyme shed just keep feeling worse and worse everyday. I told her lyme can cycle too and theres so many different strains

does what she have really sound like merniers?

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momofthree
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no...sounds like lyme to me
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lymegal23
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^ I so agree with you. I always thot mernieres was more of a localized thing. like it doesnt make you feel "sick" as a whole.
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Keebler
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-
I can't read your post but links below should help.

Meniere's is never just meniere's - there is always a cause (or a set of circumstances). There can be many causes but lyme or other chronic stealth infections are often the cause.

Of course, only LL doctors are adequate in this department. Few ear specialists are LL. Very few. Your LLMD may know of one who is.

Also, it's vital for any inner ear patient to have a diet free of: gluten, dairy, corn and soy. Sometimes, just clearing the diet makes a huge difference.

Mold, parasites and heavy metals also need to be considered - independently - and in light of possible "co-situation" kind of thing with lyme or other infection.

All food additives, dyes, "fake" foods, etc. also need to be left alone.

Environmental stuff also needs to be considered, going scent-free is essential.
---------------------------------

Every single one of these symptoms can be caused by lyme or other tick-borne or stealth infections:

http://www.vestibular.org/vestibular-disorders/symptoms.php

VESTIBULAR SYMPTOMS

============================

ALL EARS. Specifically for LYME patients - lots of details about ears and what can help:

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
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Lymetoo
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"She was tested for lyme by an ID doc and he told her one test came back pos and the other came back neg."

This was probably the ELISA that came back positive... so she has LYME. Then the ID duck ran a Western Blot thru Quest or LabCorp and it came back negative... shockaroo! [Eek!]

It's very common for Lyme patients to feel ill in different seasons, as she mentioned. And of course, it does cycle.

Why don't you Google "Meniere's" so you can be armed with more information the next time you talk to her?
========

moving to general support

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

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Keebler
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-
www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

==============================

If she had a Western Blot, it's important to know that most labs do not test all the bands that they should. And many are inadequate with testing methods. Still, no test is perfect and a ILADS-educated LLMD should be consulted.
-----------------

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077#000000

and

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."

==============================

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

Excerpts:

. . . Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.

. . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . .


. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . .

- It is important to read the full article, at link above.
-

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lymegal23
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Thanks guys for all your input

Its so frustrating I also believe she def has lyme. but shes listening to her Ear Nose Throat doctor who OF COURSE is not Lyme Literate. Plus her ENT doc told her that mernieres can cause the bad fatigue shes been having. and that if she had lyme shed just keep feeling sicker and sicker she wouldnt have good days and then bad days.

Its so hard getting these people help when they dont believe you when you say how misdiagnosed lyme is. they just kinda think ur crazy for sayin the medical world doesnt kno squat about it.

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lymednva
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I have a friend who as a child was hospitalized in NJ for two weeks with something that was never diagnosed.

She had a fever and other symptoms, which I now forget.This was before the word Lyme Disease had ever been thought of (late 50's/early 60's).

Fast forward...She has now been diagnosed with MS, Meniere's Trigeminal Neuralgia, Sjogren's Syndrome, and her knees have NO cartilage. I have probably forgotten something here, too.

She has heard me try to tell her she probably has Lyme, but since she has no insurance, and chooses to maintain her current lifestyle after her divorce she has made the decision she cannot afford treatment.

--------------------
Lymednva

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phyl6648
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My ENT dx me for 6 yrs with chronic sinus/ear infection and my symptoms are somewhat like your friends except I seldom have good days.

Guess what it is chronic lyme after 10 yrs of trying to find why I felt so horrible. I am now mainly bed ridden. So sensitive to meds my dose of antibiotics are so low don't think they are helping.

I was finally dx with the standard cdc western blot.

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lymegal23
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up
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randibear
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uh....lyme

another person who won't listen tho......sad

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

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lymegal23
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hmm i kno its sad. she seems pretty adamant on believing the doctors that its mernieres disease.
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Lymetoo
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quote:
Originally posted by lymegal23:
Plus her ENT doc told her that menieres can cause the bad fatigue shes been having. and that if she had lyme shed just keep feeling sicker and sicker she wouldnt have good days and then bad days.

That's laughable!!

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

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Keebler
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Meniere's CAN cause horrible fatigue. EVERY single vestibular symptom can. But that still does not mean that's all there is. Whatever is CREATING those symptoms is what needs to be identified.

Meniere's is just a collection of symptoms, just like CFS, etc. CFS is exhausting, yes. But, the underlying reasons are what needs to be identified and addressed.

As for some good days and bad, that happens a lot in the early years of lyme. That's what's so perplexing. But it's no reason to accept the faulty thinking that all is well unless it sends us right off a cliff all the time.
-

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bcb1200
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I know exactly how you feel. Before my lyme DX, an ENT diagnosed me with Labyrinthitis. I believe I had labs...but lyme was the root.

Anyway...I found a good board of fellow labbies who were supporting me. Some of them have been suffering for years. Once I was diagnosed with lyme I immediately let everyone on the labyrinthitis board know and pleaded with them to get checked out.

A couple of people did and guess what...lyme.

Others, particularly people in the UK, refuse. Yet they have all of the symptoms. Stiff neck, sweats, air hunger, etc. I have no idea why they refuse and continue to suffer.

you can lead a horse to water....

--------------------
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.

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lymegal23
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^ I know its sooo frustrating. its like you just want to help people but they dont listen to you. they figure "youre not a doctor how do you know any better than a doctor"

its sad , in the lyme community us patients know more than regular conventional doctors. thats why people should really listen to us. because we've been thru it we know first hand. and weve had to educate ourselves so much

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stngray114
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I was diagnosed by an ENT as having Meniers Disease; I am now deaf in my left ear. I allowed him to give me four steriod injections into my left ear. I went to three other ENT's for another opinion, one also thought meniers, the second didn't want to have anything to do with me, and the fourth said that he didn't believe that I had Meniers. It is the fourth ENT that had me tested for Lyme (not sure what type of test or lab), but I tested negative. I knew that there was something going on inside my body, I started to get all these other symptoms (to long to list, symptoms not releated to my ears). I continued to suffer for 4 months when my PCP, who is also an Infectious Disease DR, diagnosed me (clinical diagnoses) with Lyme. He said that the Lyme tests are not accurate. I live in Ohio, where there isn't supposed to be much Lyme going around, but he has three other patients that he is treating for Lyme. I live approx. 25 miles from the PA border, where there are alot of Lyme reports. I also have a vacation home in KY, in a county which has the highest deer population in the state. I have, as recent as this past summer, removed a tick from my leg and got infested with chiggers. I researched an article via the internet that tells that chiggers and biting hoarse flies can transmit Lyme. I am two weeks into my Doxy treatment and have experienced some herxes. Needless to say, I will continue with my Lyme treatment and I will not go back to the ENT that initially diagnosed me with Meniers, I always that he was too quick to diagnose me with Meniers.
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Lymetoo
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Breaking this up so we can read it.....

Originally posted by stngray114:
I was diagnosed by an ENT as having Meniers Disease; I am now deaf in my left ear. I allowed him to give me four steriod injections into my left ear.

I went to three other ENT's for another opinion, one also thought meniers, the second didn't want to have anything to do with me, and the fourth said that he didn't believe that I had Meniers.

It is the fourth ENT that had me tested for Lyme (not sure what type of test or lab), but I tested negative.

I knew that there was something going on inside my body, I started to get all these other symptoms (to long to list, symptoms not releated to my ears).

I continued to suffer for 4 months when my PCP, who is also an Infectious Disease DR, diagnosed me (clinical diagnoses) with Lyme. He said that the Lyme tests are not accurate.

I live in Ohio, where there isn't supposed to be much Lyme going around, but he has three other patients that he is treating for Lyme.

I live approx. 25 miles from the PA border, where there are alot of Lyme reports. I also have a vacation home in KY, in a county which has the highest deer population in the state.

I have, as recent as this past summer, removed a tick from my leg and got infested with chiggers. I researched an article via the internet that tells that chiggers and biting hoarse flies can transmit Lyme.

I am two weeks into my Doxy treatment and have experienced some herxes. Needless to say, I will continue with my Lyme treatment and I will not go back to the ENT that initially diagnosed me with Meniers, I always that he was too quick to diagnose me with Meniers. [/QB][/QUOTE]

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

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Lymetoo
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What a shame, stingray! It's sad to read your story!

If this ID dr does stop your treatment before you are completely well.. go to Seeking A Doctor here and someone will give you a list of LLMD's near you.

(I would personally recommend you do that now.. but that is just me.)

You may also need to be evaluated for coinfections. Very few Lyme patients have "only" Lyme.

 -

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

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lymegal23
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STNGRAY. I am sooo sorry about what happeend to you. Thats why Im so fed up with my friend not understanding. Because I know that if she continues she can get MUCH MUCH WORSE

oh ya and update. I spoke to her two days ago and she says shes getting allergic type reactions to foods. altho she doesnt know what is causing it. she eats things and just gets hives.

Shes got all the symptoms of lyme. LYME LYME LYME I TELL YA

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linky123
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My sister-in-law has Meniere's. She also has a small 'tumor' on her brain that is supposed to be inoperable.

She takes diuretics and eats low sodium to keep it under control.

I wonder if she has a parasite and/or lyme. I never really thought about it.

She probably wouldn't listen to me though. She works in the mainstream-medicine world. Maybe if it came from my husband...she's his sister; she might listen to him.

I would love to see her get better as it really makes her miserable.

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'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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