Before I was diagnosed, dizziness was my worst symptom. I was originally diagnosed with Labyrinthitis and then MAV (Migraine Associated Vertigo.)
There is a website www.mvertigo.org that is all about MAV. MAV is the new diagnoses doctors give to chronically dizzy people when they can't find the root cause. They rule out Meneire's disease and then say, well it must be MAV, even though there is no history of Migraine or way to prove you have MAV.
Many folks on that board have been dizzy for years with no relief. Others complain of tingling, air hunger, twitching, eye floaters, tinnitus, etc. sound familiar?
Recently several people have tested positive for Lyme and are telling their stories, encouraging others to get tested. It is being met with stiff resistance.
I went a posted a bunch of info and articles and enouraged folks to do the same and basically have gotten run out of the board for daring to suggest Lyme.
Some people post IDSA crap about Chronic lyme not being real (yet MAV is?).
Others just seem content to trust their doc who isn't helping them.
You try to help some folks....sigh.
Posted by beaches (Member # 38251) on :
Wow.
Sounds like what used to happen on the prohealth boards years ago.
I've always been amazed at how people are wed to diagnoses given to them by doctors who can't help them. No cause, no cure, but they're good with it. ???
You did your best in trying to help. That's all you can really do. Hopefully your message reached some people and they'll investigate further. If not, so be it.
You can lead a horse to water, but you can't make him drink, so to speak.
Posted by randibear (Member # 11290) on :
Yeah I got run off some health board to. They will learn....
Posted by beaches (Member # 38251) on :
Or not.
Some people are just not open-minded and are very comfortable with diagnoses that have no cause and no cure.
I don't personally get that, but through the years, I've witnessed this numerous times.
And after practically begging some people to get evaluated for tick-borne diseases and having it fall on deaf ears, I eventually gave up.
There's just so much we can do. And I was not willing to bang my head against the wall until such time people "got it."
If you did your best to try and educate and advocate, you've already done more than enough. The rest just has to be up to them.
Posted by Lymetoo (Member # 743) on :
It's happened to many here.. just TRY to tell someone their fibromyalgia is Lyme. Doesn't go over well.
If they didn't actually throw you off.. wait a few days and post a few links again. SOMEONE may be listening!
Posted by beaches (Member # 38251) on :
mmmm hmmmm
But why is that??
Posted by Bitten in Bergen (Member # 34067) on :
Yup. People get very defensive. I've been there, too. It's so frustrating.
People have to come to their own conclusions. Sometimes I feel that people have to be desperate enough to finally see outside the box.
Do what you can, but be easy-going about it. I took a lot of flak for being direct...
Posted by Lymedin2010 (Member # 34322) on :
I did the same with the IIH folks. With all the docs & test that I had, that is all they can diagnose me with.
I had IIH because the bacteria (most likely Borrelia) had completely filled my capillaries and cut off the exchange of fluid between the blood brain barrier. Over the years I had more & more pains wearing hats & it got so bad that I could not stand to have one on for more than a 1-2 minutes.
I also developed other body circulation issues, where too much pressure on arms, legs, or sitting down on buttocks felt burning.
I self diagnosed & KNEW it was Lyme only based on the fact that so many people around me were getting bit. It had to be. Even my LLMD was skeptical & said lets role the dice. Sure enough I went from not being able to walk, due to severe head pressures, to gradually walking in 3 weeks on IV Rocephin.
I would get headaches & blood circulation issues. With Antibiotics at least that went away, they scattered and spread everywhere else though.
I tried & tried & tried to help these people. Only one person took this seriously enough & thanked me for it.
Posted by beaches (Member # 38251) on :
Bitten in Bergen, I think being direct is the right way to be. Sorry to hear that you took flak for being direct.
I don't see the point in beating round the bush, personally.
Lymedin2010, what does IIH stand for?
Posted by droid1226 (Member # 34930) on :
Human nature....
What I don't understand is on the MS and ALS forums. I've done my share of posts, just in an honest attempt at possibly saving/helping someones life.
When there's nothing to lose...why not?
I was promptly told to leave, even by one guy who had ALS and lyme who chose no antibiotics.
Bitten, you are so right. You have to think outside the box to be a lyme patient or LLMD.
Not much in health, business, or life is very successful by thinking in the box.
Posted by Catgirl (Member # 31149) on :
I know that feeling. You can lead a horse to water, but you can't make it drink.
Posted by linky123 (Member # 19974) on :
We know a family here recently dx with lyme - mom, hubby, their two kids have it.
The woman's sister, who is by far the the most symptomatic, still clings to her 'fibro' diagnosis.
Go figure.
Posted by sillia (Member # 23994) on :
I think people feel satisfied with their 'diagnosis' because that means there's not much they can do about it (easier). For example, people with an arthritis diagnosis often give up on natural treatments than can help (range of motion exercise, yoga, dietary changes) because the doctor says they "have" arthritis so that's that. My massage therapist says she tries to tell people with arthritis things they can do and usually they won't try.
It's similar with weight/cardiac/diabetes issues--so many believe it's genetic, that they "have" these conditions and are stuck with them. They don't believe they can get better because you can't change your genes...Using genetics as an explanation is a slippery slope, imo.
And don't get me started on "aging"--friend of mine who had a bulls-eye rash a year ago tells me his memory problems are due to aging (62?). Oh, and his mother had Alzheimers so it's probably genetic anyway, sigh. He won't consider Lyme treatment.
Maybe it's easier for people to stay ill than to take the difficult road we are taking to get our health back.
Posted by Robin123 (Member # 9197) on :
I faced the same issue when I went into fibromyalgia sites to let them know it's probably Lyme disease. I was thrown out of a number of sites!
Until I learned this: to say MY fibromyalgia turned out to be Lyme disease. This way, those who are ready to listen to us can contact us, and those who are not will have least have read the idea.
In one site, someone who was ready to hear the info got out, and got to Dr J with her sick kid!
So this is a strategy I suggest you try in your respective diagnoses categories and see what happens.
Posted by beaches (Member # 38251) on :
You know what?
I think if people are truly trying to find answers, ESPECIALLY for their kids, they'll turn over every rock looking for a cure/answers. I think/hope most parents do that.
But if people chose to live in a mindset of ignorance, there's not much we can do.
Posted by nonna05 (Member # 33557) on :
What is IIH?
Illness=BAD Cure=GOOD
Diagnoses=Critical
Posted by glm1111 (Member # 16556) on :
Well, I hate to say this, but I have run into the same resistance on this board trying to get folks to see that parasites were a major co-infection of Lyme.
Posted for several yrs about this and was pretty much ignored until recently. I kept persisting because I knew first hand that this was a missing link for those chronically ill.
My persistence paid off finally and was well worth the effort. Point being, sometimes we can all get "stuck" on a dx.
Gael
Posted by surprise (Member # 34987) on :
I was one of those people who thought Lyme was absurd, no way (partly because I have no memory of a tick bite)
Really, no way. But I kept 'seeing' and 'hearing' other people bring it up.
So you are making a difference.
Posted by Lymedin2010 (Member # 34322) on :
Idiopathic Intercranial Hypertension (IIH), the Idiopathic portion means they don't know what causes it.
It is also known as Pseudo Tumor Cerebri (PTC), because it feels so painful in the head (too much backed up pressure) that it feels like cancer. It sure did to me.
For some the pressure remains so high that they end up having a SHUNT. They place a drain valve between the brain & the stomach. All excess fluids (because of the back pressure) then drain directly into the stomach.
Many with IIH also have dizziness, vertigo, blurry or disturbed vision, sound sensitivity, tinnitus.....the list goes on. Sound familiar?
I think some of the symptoms we experience with Lyme are the result of bacteria growth in areas & they produce the pressure against various nerves and senses around our bodies & in most particular the head area.
It really is quite complex as to why people respond the way they do to a contrary possible cause of their disease.
Some are quite content to suffer with it a commiserate with others.
Some would like to find the cause, but in a politically correct way. They need the diagnosis from an authority figure to make the disease valid. In their mind, the person diagnosing the disease is more important than the disease itself. They need a "stamp of approval" so to speak.
Others, like myself, did not have a problem mentally with the doctors being wrong. I work with doctors regularly, and they are just humans like the rest of us, and make mistakes.
I had a problem with believing that I had other treatment options, other than theirs. It seemed logical to me that doctors would have the very best and most effective treatments for any given condition. They are in the business, and it makes sense until you learn how handcuffed they really are.
It is very unsettling for anyone to learn much of what they thought they knew, was wrong. It is not easy to learn that doctors are not all knowing and that medicine is not really geared in the best interest of the sick.
Sometimes denial is a defense mechanism to prevent your personal world from being turned upside down. For instance, my wife has a real problem with the possibility of her having parasites. It is not that she thinks it is not possible, but she does not want to discuss it, see any if they are killed, or know anything about them.
For myself, I can't believe that doctors think they are not common. There is no other mammal that does not have them. Ask any farmer, it is hardly a secret. But, officially they are rare, and I guess people feel good about believing that.
I still have trouble comprehending people and organizations that thwart progress in medicine for increased profits. I don't dispute it happens, and have no qualms about those involved in medicine making good money. What I can't come to grips with is sacrificing people's health and lives for a higher stock price or a higher paycheck.
I have also been mostly ignored when telling people with Lyme symptoms to test themselves using a natural antibiotic or some other method. Their doctor already told them they do not have Lyme, and that is the end of the conversation.
One even tried using Cumanda, herxed on it, yet still accepts her MS diagnosis. She was also treated for Lyme previously. This is a no brainier for me, but not for her.
Oh well. We do what we can and that is all we can do.
Dan
.
Posted by Abxnomore (Member # 18936) on :
I think fibromyalgia sites hold the grand prize for this kind of behavior. My guess is that they are so happy that the medical establishment finally recognized their symptoms and have developed all kinds of medications for fibromyalgia that they just can't see that it's a collection of symptoms that their doctors are treating with no known cause. I'd want to to know the root cause of my symptoms but they seem to be content enough to have an official label.
Posted by surprise (Member # 34987) on :
You know what is the worst? That so many cannot afford Lyme treatment anyway.
My sister, who lives in a endemic state, has fibromyalgia, her mainstream Dr. did a cursory Elisa test
(of course it came back negative, they all do) so she will not pursue Lyme further. And, she is broke, anyway.
This is a huge part of it, too, of course.
Posted by Lymetoo (Member # 743) on :
And some are now on disability and afraid to lose it!
Posted by bcb1200 (Member # 25745) on :
quote:Originally posted by glm1111: Well, I hate to say this, but I have run into the same resistance on this board trying to get folks to see that parasites were a major co-infection of Lyme.
Posted for several yrs about this and was pretty much ignored until recently. I kept persisting because I knew first hand that this was a missing link for those chronically ill.
My persistence paid off finally and was well worth the effort. Point being, sometimes we can all get "stuck" on a dx.
Gael
Is this a nice way of saying "I Told you so"?
Love your input Gael..don't stop it.
Posted by carolann2013 (Member # 39964) on :
I am rather new at all of this.
I didn't really want to believe what I had was Lyme either. It is a lot of trouble and expense to have Lyme.
I haven't had a positive test. I had the bite, the rash and the second bite continues to come back.
I had strange migratory pain. None made sense. I tried to google it and Lyme kept coming back as an option.
I began to read about Lyme. Other problems I was having seemed to come together and spell L-Y-M-E.
It is a lot of trouble to have Lyme. I had to take off work, come up with a couple of thousand dollars to drive about 7 hours to the nearest LLMD.
Then the prescriptions are all outrageous. So many supplements...I get them all confused.
Do I know what I am actually doing now???? Do I know if what I am doing is the best thing for me to take? No....I don't.
I know I take a lot of pills and supplements. I know my future holds more money to be spent on pills and supplements.
I know that there will be a couple more trips to the doctor that is 7 hours away. More time off of work.
I do know that my pain isn't as bad as it was. I do know my energy level is up...not much...but still a bit.
I know I could eat a banana split and a molten cake sundae right this very minute....but no sugar...
Haven't gotten around to the 'gluten' free diet yet. May have to later...........
Nope it isn't easy. I studied around with the notion of Lyme even up until the day before taking the 7 hour trip to the doctor. I wasn't sure even then, if I would go or not.
I can understand how people might want to take the easy way and not believe that it could be Lyme. No one understands it. Lyme doesn't make a bit of sense.
The symptoms are mysterious. No rhyme or reason. One day you are good, the next day you can't hardly walk.
No sense at all.
Posted by droid1226 (Member # 34930) on :
Gael is right. And I'm one of the ones who doesn't listen to her constant posts, I'm ignorant...Just keep pumping abx into body cause doc says to.
But she's prob cured or helped relieve symptoms of so many desperate sick people.
Hardcore parasite treatment is my next option thanks to her once I get my picc pulled.
The original post from BCB is so frustrating. There's a whole forum for vertigo? ugh
Not only a forum, an industry of dr's, gadgets, meds.....when most of it can be solved or alleviated with some in depth blood tests and proper treatment.
I wonder what the percentage of the forums on mdjunction are actually lyme and coinfection related. Am I crazy to think it's at least 20%.
There's forums for bipolar, fibro, depression, even beaver fever...whatever that is. I don't think it's what I think it is.
Posted by lpkayak (Member # 5230) on :
i had that MAV a long time ago but they called it "silent migrains" - i didnt have headache-just saw lights and was so dizzy i had to crawl to the bathroom was hospitalized for 5 days with it too
i didnt read all the responses but i learned a long time ago to try to help with a short and sweet suggestion and then just back off
its not worth wasting energy you need on these ppl
Posted by glm1111 (Member # 16556) on :
bcb,
No, I'm really not an I told you so type of person. Sorry if it came across that way. I guess what I was trying to say was that sometimes we can see what others are not seeing, but we don't see what's in our own back yard.
It's a reflection of sorts. Not a criticism, just an observation, because in the end, we are just all trying to help each other get well.
Gael
Posted by Pony (Member # 32559) on :
That's crazy, I was diagnosed with labyrinthitis as well.
I had to get bit again to figure out it was actually lyme
I wish someone proposed lyme to me on a vestibular disorder forum.
If someone said "lyme can cause/present as dizziness, vertigo etc. it would have clicked for me immediately as I spent my weekends hiking and camping deep in the Pennsylvania backcounty
Instead I said, "I don't have a rash, I don't have any joint pain, can't be lyme" Posted by bcb1200 (Member # 25745) on :
quote:Originally posted by glm1111: bcb,
No, I'm really not an I told you so type of person. Sorry if it came across that way. I guess what I was trying to say was that sometimes we can see what others are not seeing, but we don't see what's in our own back yard.
It's a reflection of sorts. Not a criticism, just an observation, because in the end, we are just all trying to help each other get well.
Gael
Gael..no apology needed. Thanks for your contributions. Posted by glm1111 (Member # 16556) on :
Your very welcome. Hope you are doing well.
Gael
Posted by bcb1200 (Member # 25745) on :
Well..I finally went and got banned simply by suggesting Lyme.
I suggest anyone who had vertigo, dizziness, or thought of MAV / Labyrinthitis go to mvertigo.org and post there.
Posted by glm1111 (Member # 16556) on :
Do ya think I would get banned if I went there and suggested that they had G.I. parasites/worms and gave them www.lymephotos.com to view?
Gael
Posted by D Bergy (Member # 9984) on :
In record time.
Dan
Posted by koo (Member # 30462) on :
Lyme was casually suggested to me when I was seeking help on a pituitary board since I had pituitary issues. Of course I disregarded it....I didn't understand Lyme.
Time passed and when I poured my heart out to a friend via e-mail, she said I sounded like everyone where she lives who has Lyme (she lives in CT).
Then she sent me links that described the disease and its symptoms. I still remember that I broke down and cried reading that information because it was spot on. It took 18 months of hell. I knew i finally had a dx.
I remember asking my husband why didn't the medical community suggest this? Boy, you learn quick.
Posted by randibear (Member # 11290) on :
i have an acquaintance who lives in lewisville and goes to a fibro center type of thingy here.
she does not work. she was diagnosed with "bi-polar" among other things, and yes, fibro.
she literally has a drawer full of medications and some on her counter.
i talked until i was blue in the face. no go. her "doctors" have convinced her that lyme is an imaginary illness and she's got fibro. and this place is supposed to treat lyme!!!
she has spent thousands at this place, i mean thousands. it's as if she's proud of having fibro. she will tell you "oh i have FIBRO not lyme"...gggrrrr
i just have to shake my head.
Posted by sutherngrl (Member # 16270) on :
I got thrown off the prohealth board years ago for talking about Lyme Disease. So did several others around the same time. What a shame. So many ill people that haven't a clue. And many with Fibro just don't want to hear it.
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