I have a question for you all. (I hope this is the correct section...still trying to figure my way around here)
Reading about all of you here, and how much you suffer every day from the lyme makes me wonder...
1- I'v never found a tick on myself. 2- I never had the lyme rash 3- While I do have some symptoms, they're not nearly as bad as what I'm reading some of the people here put up with. Mine are annoying and do impede on my quality of life. But they're not that debilitating most of the time.
So, I'm wondering. Do I really have lyme?
Yes, I did test positive for lyme and coinfections when I was tested 5 years ago.
But, I've been told by more than one infectious disease doctor in well-known hospitals, that 90% of people who live in rural NY areas would test positive for lyme, if they were given the test. They aren't tested, so they don't know about it and never need treatment.
Meaning, just because you test positive, doesn't mean you need treatment.
So all this makes me wonder.
Is there any foolproof way to know if you have it? And when treatment is done, do u test negative? So you know it's gone? Beyond doubt? Relying on personal symptoms, especially when you're not sure what's really going on in your body (and you have more diagnoses than you are years old) seems confusing to me.
I guess I just don't trust myself, and my knowledge of my body, enough.
Does/did anyone else doubt whether or not they have/had lyme?
This may be wishful thinking on my part, I know...but I'm still wondering.
I'd love to hear thoughts on this.
[ 05-03-2009, 10:08 PM: Message edited by: fighter ]
Posts: 34 | From Airmont NY | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
If you tested positive for lyme AND coinfections (you imply more than one) it is highly likely that you had all that.
All those are not just going to test positive out of the blue. Chances for winning the lottery would be less than then chance of having 3 or more tick infections test positive for no reason.
It's understandable not to trust yourself to figure out all this - that is why it's important to see a doctor who is educated with ILADS research or an ILADS-member LLMD.
Lyme is very complex and can affect people in different ways. Same with some of the coinfections.
You say wishful thinking - so then you are wishing for health? If you are not feeling well, finding health will require far more than wishes - and far more than trying to figure it out for one's self.
You say your symptoms are not that debilitating most of the time. Well, if they are at all, they can get worse and you need to be pro-active to prevent that from happening.
Please get assessed by a LLMD. This will not be solved with speculation. You need an expert.
1- I'v never found a tick on myself. 2- I never had the lyme rash
3- While I do have some symptoms, they're not nearly as bad as what I'm reading some of the people here put up with. Mine are annoying and do impede on my quality of life. But they're not that debilitating most of the time.
So, I'm wondering. Do I really have lyme?
Yes, I did test positive for lyme and coinfections when I was tested 5 years ago.
But, I've been told by more than one infectious disease doctor in well-known hospitals, that 90% of people who live in rural NY areas would test positive for lyme, if they were given the test.
They aren't tested, so they don't know about it and never need treatment.
Meaning, just because you test positive, doesn't mean you need treatment.
So all this makes me wonder.
Is there any foolproof way to know if you have it? And when treatment is done,
do u test negative?
So you know it's gone? Beyond doubt?
Relying on personal symptoms, especially when you're not sure what's really going on in your body (and you have more diagnoses than you are years old) seems confusing to me.
welcome fighter, i'll answer some of your questions, but you've got a lot of reading ahead of you and may i suggest you go to TREEPATROL'S newbie info shown in my signature line please? he's got over 1000 links of good info; skim thru it and start learning the BASICS there ok
i too never saw a tick; not embedded; and NO bulls-eye rash. 1st dx was mono/epstein barr virus 39 yrs. ago.
bottom line; 34.5 YEARS MISDIAGNOSED BY 40-50 DRS!!! disgusting.
progressed to many other names/symptoms...fibro, chronic fatigue, irritable bowel/bladder, TMJ, HEADACHES/MIGRAINES, gut problems, and list goes on & on.
may i suggest you be more specfic in subject line by editing it with pencil, 3rd box to right of your name.
was treated for lyme/cos 5 yrs. ago; how do i know it's gone? do you retest?
also, after you change your subject line, please double space between each paragraph you have for us NEURO lyme folks who can't read or comprehend solid test ok...thanks!
you also stated you've been to INFECTIOUS DRS; they are the ones who UNDERTREAT with antibiotics from 1 day to 3 weeks max, and do NOT BELIEVE IN CHRONIC LYME.
sorry, we have no respect for 95% of infectious drs; 5% we do who try to help us chronic lyme folks.
so we disregard whatever the ID dr. said; sorry; that's the way it is on this board and all the runaround we all hve been given over the years.
DO YOU STILL SHOW SYMPTOMS? go thru the complete list of symptoms and how many are still there.
posted
Never trust an infectious disease dr when it comes to Lyme disease. They are clueless.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I'm in the same boat you are.
No tick bite known, no bullseye rash, and my symptoms suck, but I'm in no way near as bad as many on this board are.
So far my LLMD has only tested me positive for Ehrlichia, but he is pretty sure I also have Lyme, babesia and bartonella.
We're waiting for the IgeneX tests.
But I also wonder sometimes if I really do have Lyme.
So far the abx haven't done much, other than make me sick to my stomach and dizzy.
I still have the air hunger and the visual problems, as well as joint pain that comes and goes.
But I'm with those who say not to trust infectious disease doctors; they're typically clueless about Lyme.
I would just say to keep pluggin away, and keep learning all you can about Lyme and company.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I never saw a tick, never had a rash....and yet
When I went down hill (years later from when I think I was infected)
I went down hill fast! It was really bad.
From a functional human being to someone who couldn't
Walk or talk, or remember, or keep my eyes open, or fall asleep at night.
I could go on. It may be that your immune system
Has been posting a stronger, better response than others.
It may the type of infection you have.
There are over 300 strains of bb world wide.
Some more virulent than others.
If you tested positive, with Lyme specific bands,
Then you had/have Lyme.
Count your blessings that your symptoms are more
Of an inconvenience than a disability.
Remember too, that many people that come here,
Like I initially did, are so sick with the virus.
I am so much better now than I was then.
We all question our Lyme diagnosis at least once or twice.
Are you getting better? Do you herx?
To me, those are also indicators of what may be going on with you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi and welcome!
I also do not remember a tick bite, never had a rash and I'm not disabled.
I had a fibromyalgia diagnosis for 21 years. I discivered through my own research at the beginning of 2009 that chronic lyme caused my symptoms.
I am one of those people who looks like there is nothing wrong with me.
But if you could live in my body, you would know that all the muscle pain and stiffness, insomnia, fatigue and many other symptoms are bad.
My neck pain and stiffness went through the roof in the past 15 months...and my insomnia worsened at the same time.
Everyone is affected a little differently depending on the path the bacteria took and other infections you may have...plus your general health, age, heredity, etc.
Lyme is a clinical diagnosis, based on history and symptoms. It can be supported by labwork.
It takes a good ILADS trained LLMD to sort it all out and prescribe proper treatment.
It is absolutely necessary for you to read/learn as much as you can from the recommended readings.
Start with the ILADS guidelines, Dr Burrascano's 2008 guidelines and this booklet from lymepa.org........
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi fighter. From reading your other post, I will summarize your situation by saying:
you had lyme and coinfections,
got treated by one of the top lyme docs in the country,
you stopped treatment before all your symptoms went away because you were tired of herxing,
and you still have these same symptoms.
Therefore, you still have the disease(s) you had before.
You need to finish treatment. Then, you can forget about this disease and live your life.
It is like finishing college. Go back and finish your lyme treatment so that you never get any worse, OK?
The symptoms you have aren't normal. Get yourself back to normal so you can have a normal life. You have so much life ahead of you at your age.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I sometimes question whether I have Lyme. I will even say to my daughter's doctors that ask that "I supposedly have Lyme".
My daughter does have Lyme and had the bullseye rash.
I just noticed from being here for her, that I have a few symptoms. My symptoms are mild. I don't remember a bullseye rash or a tick.
I am mostly convinced that I have Lyme because I think I herxed one time during an antibiotic challenge and taking antibiotics reduces or eliminates my symptoms. If I stop the abx, they come back. So whatever I have, it appears to be bacterial.
There isn't another doctor that would think anything, other than stress, is wrong with me. If I want to get rid of these symptoms, Lyme treatment seems to be the only possibility.
Posts: 984 | From US | Registered: Dec 2007
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posted
Thanks everybody for the overwhelming response.
I hope I did not come across as an obnoxious tween who's trying to question what those who are smarter than me readily accept.
Or as someone who thinks I know better than the experts.
I'm not that. At all.
I'm only trying to come to some understanding so that I can know, beyond shadow of doubt, that this is a worthwhile investment for me personally.
keebler - i do have symptoms. but they can easily be from any of the other diagnoses i have.
i am wishing for a completely healthy functional body. but i remember anything but that during my last round of treatment. it was miserable!
you're right that i need an expert. i just need to figure out how to fund it.
bettyg- oh, i've been reading. even before i got to this site.
just finished "Everything you need to know about Lyme Disease" by Karen Vanderhoof (or something like that).
i'm trying to become an educated consumer. hoping y'all can help me with that.
or maybe point to a few comprehensive ones to start with.
that list seems a bit overwhelming!
lymetoo and starfall - why is it that ID docs are clueless?
isn't this a black-n-white bloodwork results thing?
if you're positive - u have the bug.
if you're negative - u don't.
i don't get the confusion.
geneal - good point on the herxing.
i did herx last time. miserably. for a year. ugh!
i wonder, do 'regular' people get very sick from iv antibiotics?
dekrator - u sound like me (except a bit older and suffering for longer ).
how long have u been in treatment? are u any better now?
TF- will i be able to forget about this whole lyme thing after treatment?
cuz if the answer is a 100% yes, beyond doubt, i'd jump into it. definitely.
but it seems like so many here, who are in treatment, have it lingering for 2...3...5...7... years. or more.
and that it goes away, but then returns.
is that accurate?
i like what u said about college . if it were like college i'd be able to handle the idea more (provided i find the funds)
in college u know u need x amount of credits which u can finish in x amount of years and write x amount of papers for each class, etc.
and u know, at each stage, exactly how close u are to the goal.
whereas this seems like there are so many variable. and u don't even know what the goal is.
can lyme ever be eradicated from the body? as if it never were there in the first place?
is the damage it did reversible?
jkmom - ya. lyme seems like the only treatment possibility that might be able to get rid of the symptoms (versus treat the symptoms)
but does that mean it's necessarily what's goin on?
i guess we share that dilemma!
as u can tell, i'm struggling with this.
thanks everyone for hashing it out with me.
Posts: 34 | From Airmont NY | Registered: May 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hey fighter, I and my friends and acquaintances have all gotten rid of lyme and coinfections by seeing a Burrascano type doctor. For me, it has been 4 years since I finished treatment and am enjoying my life, symptom-free--the same life I had before lyme disease. All the "damage" it did to me went away. My friends too.
I know another person who got rid of her lyme in her teens and has never gotten it back. Got married, had kids, is doing great.
So, nearly everyone I know who had lyme got rid of it.
Did you know you can never eradicate chickenpox from your body? You can't. But, how many people worry about that? Lyme is not unique in this way.
Remember, you only have the possibility of getting rid of lyme like me and my friends if you finish treatment.
Nobody can promise you anything. But, since your symptoms are so mild now, it sounds like you have an excellent chance of getting rid of this thing and moving on. I expect you will be able to do that.
If you don't go back and finish treatment, it is a guarantee you will continue to have lyme and eventually it will get worse. If you get in a car wreck, get some other illness, get pregnant, have a death in the family, or any other type of stress on your body, that could be all the lyme needs to get the upper hand over your immune system.
So, think of it like a ticking time bomb in your body if you decide not to go back and finish treatment.
Don't play around with your health. If you don't have your health, nothing else matters. You are miserable. People lose their jobs, their spouses, their friends, their health insurance, etc. all over lyme disease that hangs around year after year, keeping them sick.
You have almost eliminated it. Finish the job. Get family to help you pay for good treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bettyg
Unregistered
posted
read book, CURE UNKNOWN by pam weintraub, released last year.
or PJ LANGHOFF'S series of 3 books
IT'S ALL IN YOUR HEAD, 80 patient stories in book 2
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do u all read thru ALL of it?!? (and is all of it accurate?)
thanks for the link, lymetoo.
now i know i'll never be bored for a very long time Posts: 34 | From Airmont NY | Registered: May 2009
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
You know for SURE you have lyme when you have 'heavy head syndrome'. Never heard of any other malady that causes same.
Another item that is basically proof positive. Intolerance of alcohol. When one drink makes you feel like 5 the NEXT day. AND makes you so miserable you decide NEVER to indulge again!!
If somebody can find another medical condition that says that is a sx of anything else,,,please let me know cause I havent seen it in too many years of searching!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Just don.. Incredible what you write about the alcohol. That symptom alone really makes me think I have Lyme. I totally stopped drinking because it always made me feel SOOOO bad the next day and now there is a reason why. I never understood how SO many people could drink and drink when 3 sips made me feel AWFUL.
posted
I'm just curious about something... I've never had a problem with alcohol. I don't drink a lot but when I did I didn't notice anything. I probably had lyme for a long time before diagnosis. I haven't had a drink since being really sick and finding it was lyme, but I wonder if people don't have this reaction? Does it always happen? I'm still questioning what's truly going on with me. Can't help it!!
Posts: 86 | From new york | Registered: Jun 2008
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did u mention petechiae? as in those tiny purple 'polka dots' all over the skin?
does that have anything to do with lyme?
i never had a bulls eye, but i've had periods of time with loads of petechiae, all over my body (disaster for a teenager!) and no doctor knew what it was.
at one point i was inpatient at a hospital and they called dermatology, did biopsies of it...and never found anything conclusive.
is petechiae lyme related?
Posts: 34 | From Airmont NY | Registered: May 2009
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