posted
How do you know what to believe? Its so hard there are so many issues to this Lyme Disease issue. Since I have been tested positive, it seems like someone would rather treat AIDS than Lyme disease.
I got alot of "emotional questions and depression questions and what does your family think issues from the ID doc yesterday.
I really was a healthy active person who enjoyed life. I did not decide one day that I just was not going to feel like shopping, going to ballgames, playing with my children and just take to my bed and watch lifetime for women.
At one time I was so busy that sounded like fun, but now I just want to be able to clean my house and maybe wear a pair of high heel shoes again. Posts: 347 | From WV | Registered: Jan 2007
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I think the best thing each of us can do for ourselves in figuring out what to believe....is try as best we can to
believe ourselves.
This is excruciating and even impossible at times with lyme disease, esp. if long term neurological.
But I think there are great numbers of people who are suffering with this disease and it is my theory that
Not only Lyme CT was experiencing the onset back in the 70's but surrounding areas and it was only that they were the ones identified and the rest went on to live without help until
20, 30 years later.
So...hard as it is against a medical establishment and government who says basically that lyme disease does not exist in this way....
that's the ultimate thing to learn to do is believe yourself and find balance in how to treat the disease.
posted
personally, after 7 seven years of being sick, i think that the only way to approach this is trial and error.
there really is no way to be 100% certain what the magic bullet will be.
IMO there is an underlying infectious cause to my condion, but after being sick for so long it may take more than just an antimicrobial treatment to get better.
one thing that i believe that is happening for some of us is these infections have damaged/altered the energy producing part of our cells (the mitochondria). this can cause a chain reaction because once the cells stop working properly then what their function is also becomes affected. so depending on which cells that is, that part of the body - whether it be the brain, or the immune system or the heart, etc - stops working the way it should.
for some people all it takes is attacking the microbe and once that is gone or put in check then the body can recover. for some we may need to also do something to get these other things functioning again. getting rid of toxins etc...
but finding out and treating the infection is also difficult. there are alot of different things that could be the cause, and it also could be a combination. viruses, bacteria, fungus, and others.
and just becasue one treatment doesn't work, doesn't mean another also won't work.
it really is trial and error, and also not giving up.
but one thing that is essential is finding Doctors that are willing to go through this process of trial and error with you.
LLMDs can be perfect for that, but also many don't take insurance and also have their own protocols and if that protocol doesn't work then you need to go to another DR.
we also have CFS Docs who seem to focus on the immune system and more recently viruses.
i have been bouncing around between both and haven't found the answer yet, but i ceratinly know alot more and refuse to give in.
my advice is to keep asking questions and keep going with your gut instincts.
you know that you don't feel right. you know that you used to be a very vibrant person and you know that you didn't choose to feel this way, and most importantly you are not making this up...
we are all going through this together and hopefully one day for all of we will each find the thing that works for us.
there are a couple of other boards that i also find helpful.
posted
For me it was read, read, learn and read some more! The learning process never really ends as more is found about this disease each and every day.
Unfortunately, it sounds like you're experiencing a bit of what all of us here have gone thru. In that your ID doc is questioning "emotional" issues.
I'm sorry for that--most of us have been there. That's why this forum is so necessary, we reinforce each other everyday. We laugh and cry about the nonsense responses that the ducks give.
We help each other by being here and reaffirming that when they say we're crazy, we know we aren't and there are more of us than just ourselves that have the same symptoms.
We know the illness that they refuse to deal with.
Some of us have different ways to deal with these bugs, but in the end each of us is looking for what will eradicate it.
My suggestion is to get a good Lyme Literate Dr. who will guide you thru...
Read the success stories when you get so down you don't know which way to go. These success'are like a beacon to keep you on the road to getting well.
posted
I feel the some way a lot of the time. Am I going to be single, loose everything, and live with my mother for the rest of my life. It will get better though.
You shouldn't be watching Lifetime anyways. It's horrible.
-------------------- Never walk through a cornfield backwards.
posted
Oh please, go to a good LLMD who won't dwell on "emotional" issues and start treating you.
You need good medicine and time to feel that it is working---then you will be sure you are on the right path.
You will no longer question who you should believe---You will believe yourself,,,,and you will be right.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I can tell you what to believe.
Believe mostly what you read on here, talk to others on here, with lyme, and that is all you need, that and your LLMD's and good GP.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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bettyg
Unregistered
posted
you've received great advise above! KNOWLEDGE IS POWER so continue reading every day; question things.
USE YOUR GUT FEELINGS! they will tell you what you should try and not try! it's something we all need to do more of.
there is always H O P E !! NEVER LOSE SIGHT OF IT; read the success stories in general or found in the links'advise i sent you as a newbie.
best wishes, and welcome to our club ... what do i do next!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Yourtroubl,
I say believe in yourself and your symptoms. I've been dx 2 x with post traumatic stress disorder.
Ha Ha. All I knew is that there was something very wrong with me and I felt all MD's I saw just patronized me and gave me xanax or paxil.
I really thought I was dying and no one could figure out why. I asked repeatedly to be tested for Lyme, but you know we just don't have that here.
Trust your body and your self. I learn something new every day about Lyme and co-infections.
Believe in how you feel , then get a good LLMD to help you on the road to recovery.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I looked for answers for 43 years. My family decided I was lazy as I needed to sleep so much of the time. I too use to be busy all the time. I worked a day time job and worked a part time job at night. I was rasing a daughter at the time and my house was always clean. I had one doctor tell me I needed to find my problem and solve it. He leaned down very close to my face when he told me that. I asked him if he was telling me the pain I felt was not real. He said oh it's real alright but only in your head.I got up off the table and never went back to him again. I kept looking for answers and finally found a good docotr who is treating me for lyme disease. There were times when I wondered myslef if I was really sick or not. sick
Posts: 538 | From Iowa | Registered: Apr 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
This question comes up a lot. (in fact, didn't I just respond to the same thing this morning?)
I was sick, but I didn't know how sick. Then I got better, and was happy to return to my old activities, and pursue new ones. Every week, I find myself saying, "I couldn't have done that when I was sick." Being in better health, I can now look back and say I was in poor health.
It dawns on me that we are missing something. The family doctor, the GP. You know, the guy who saw you grow up, who knew your family, who kept your growth chart, who treated you for measles, the flu, and the sprained wrist.
He saw you at least once a year even when you weren't sick, just to touch base and see if you had any complaints, make sure your heart was still fine and to remind you to lose a few pounds. He made a house call when you were little, just so your mom wouldn't have to drive a sick kid to the doctor and to feel even more miserable.
That doc has been replaced by a PCP, who has 10 minutes (if that) to evaluate you and ask, "So how's it going?" He has so many patients, he has to read his chart just to refresh his memory of who you are, so he doesn't sound like he doesn't remember you, which he doesn't. He got into medicine 'cuz he wanted to help people, but he's so busy, and the pressure....
He is urged to do things by evidence-based medicine, which means a quick blood test and home you go to wait for results. Very efficient. If you have a complaint he is unfamiliar with, he checks it out on the Internet (in the other room, so you don't see he doesn't know). He can also dispatch you quickly by sending you to a specialist.
The specialist has never met you before, so he can't tell if you have less energy than usual, or if you are a complainer or a stoic. So he has to rely on evidence-based medicine, because he doesn't know you.
And Dr. Specialist just went to a seminar where those ID bigshots were talking about those silly women on the Internet who have convinced themselves that they have chronic illnesses. Silly, whiny women. Wink, wink.
Please, trust yourself about how you feel. No one else is more qualified.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
The specialist has never met you before, so he can't tell if you have less energy than usual, or if you are a complainer or a stoic. So he has to rely on evidence-based medicine, because he doesn't know you.
VERY TRUE!!
Whining?? How about SUFFERING? I never once whined.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Ditto to what Shaz said. When I was diagnosed in 2004 (infected in 1985)
the llmd was a LONG plane flight away. I had to find a physician in my area that would work with the llmd.
I had a new pcp, he was young, new to this huge practice, and was very caring and concerned about
what I was going through. Was willing to work with the llmd. Two months later, he (with genuine
regret) cut me off as far as the lyme treatment went. The senior doctors of the practice came
down him hard. They said what he was doing was
too big of a liability for the practice (business) as a whole. He then referred me to
an infectious disease dr. His dad is a dr and so is his uncle. He was getting info from them
from time to time so everyone got to him eventually.
You're right, sending you on to a specialist get you out of their hair.
My pcp started out so trusting of my llmd, even took the time to read a book authored by the llmd that I brought to one of my appts.
It didn't take long for him to be brainwashed though. When he recommended the infectious disease specialist and then implied ,
he (the id dr.) could find out what REALLY was going on with me, I just about passed out in his office.
I cried all the way home. He was a caring, well-intentioned dr who is relying on the info that is was trained on
and in the midwest, they are extremely undereducated on Lyme.
Thank God my husband got a job last summer on the East Coast and I have more info and more
llmd's available in the area.
Hardly ANYONE knows what Lyme is in the midwest. Here, it seems like everyone that I have met since last summer knows someone with it or has been treated for it themselves. It's common here so you're not viewed as a crazy person (downside of it being so common is that reinfection is more likely here-but hey, you can't have everything)
Hang in there , we are or have all gone through the frustration of being doubted by drs, family members,
friends. It's scary trying to decide which treatment to use (that's how I'm feeling now because I am getting other opinions from other llmd's who treat differently)
It's difficult if you have neuro symptoms also. Trying to sort it all out.
I do get encouragement by the info on Lymenet. I just joined in when I moved here last summer.
Just a warning though. You can go on info overload and get overwhelmed.
You'll hear alot of encouraging words and some occasionally very depressing stories.
Just don't dwell on the depressing ones. There's too much great info on this board .
Also, since you're new, don't get offended if you are corrected on how to write out your posts.
It truly is constructive criticism by caring people that just want to make it easier for
others to read or reply. I got my feelings hurt by this in the beginning and that is easy to happen
when you're already feeling horrible or depressed.
And I'm still working on the advice that they have given me. (Notice veterans, I am finally
breaking up my sentences!) but am still too wordy.
I don't know if I'll ever be able to break that one Case in point, Yourtroubl, do you even remember
the topic that we're on now? I had to scroll to the top to see for myself! HA!
WELCOME to Lymenet. You will come to love ALL of the different personalities that you encounter here.
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm not sure if this is answering your question. But I think you are asking how do you if you should believe you have Lyme. Is that right?
This is how I did it.
First of all, the diagnosis felt right. I had spent two years in constant pain, and none of the other diagnoses (tendinitis and fibromyalgia) felt right. I knew it was something else.
Second, it fit my history. I had a bulls eye rash on my neck when I was 12. I developed a swollen knee 18 months later that persisted throughout my adolescence. So there were definitely some signs pointing me towards Lyme.
Third, I decided to give the treatment a shot and see what happens. I told myself I'd give it a year. At 6 months, I started to doubt.
I went to see another rheumatologist who said not Lyme, not fibromyalgia, he has no idea. I also saw a 2nd physical therapist who said my body did not react like a person with fibromyalgia. So I figured, no more answers, but not fibro, so lets still stick the treatment.
At about 7-8 months, I started seeing progress.
Then, I eventually had to stop treatment for a couple months and I got much worse. I developed new neurological symptoms that went away after months on an antibiotic that crosses the blood-brain barrier.
So a lot is just faith. And then through time, I saw the proof.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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