My ? is , is it possible to at times feel ok if you have never been treated for Lyme?
Been sick 16 years, symptoms come and go, though some have always pretty much stayed with me. Other symptoms seem to come in waves, or daily, no real pattern with them. And seemed to be better when pregnant.
Just trying to get as much info as possible to help diagnose myself, or get in the right direction, before going to another doc.
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Yes. It's possible. That happened to me as well.
I was undiagnosed for 20+ years. Some symptoms were part of my "normal" but on the whole I was remitting and relapsing.
My field required intensive back country trekking - which I could do at times. Other times, I would be out of work (or school) for months at a time.
Could have gone on like that forever, but eventually - as will happen to most - I started on a permanent downhill slide.
Please get to a great LLMD, and get evaluated before that happens to you.
Oh and - hi neighbor! I used to live in GSO.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes. The infection can go dormant. The infection can be controlled by the immune system. The hose may have a genetic predisposition to not forming inflammation, and thus they experience far less symptoms only later to become crippled when the infection reaches critical mass.
It is possible, and this is why there is such discrepancy among Lyme patients. I've met Lyme patients who told me I was a lazy pussy, that I was over exaggerating my illness and leeching off the government with my feigned disability -- that it "isn't that bad."
The worst antagonizing accusations come from Lyme patients who got bitten, saw the rash, went for treatment immediately and took their 2 weeks of antibiotics. These people recover their health, and are fortunate not to relapse. They produce the irony and paradox of Lyme Disease, clinical evidence that supports the IDSA perspective, and reinforcing the publics confusion over the disease process.
Then you have the Chronic Lyme Disease patients with very few symptoms who never became disabled or miserable in their illness.
They'll say "Some days I'm a little more tired than other people, but I can still do my job and carry on a life. Maybe my knees ache a little, but I still go running in the evening."
This is why this disease is so poorly understood and why misunderstanding and assumptions abound.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Take Care.
Posts: 262 | From ohio | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, it is possible. I was bitten at age 5 and was sick off and on sometimes going a number of years without noticeable symptoms.
Pregnancy brought on the illness but I got better a few years later due to a course of abx for another condition.
Eventually I started a downward spiral at age 30 that disabled me and I became very ill for the next 20+ years.
Didn't know it was lyme until a few years ago. It's a long expensive road back after being sick for so long.
All of my siblings are sick. They also had relapsing and remitting illness but they didn't become disabled until about 10 years after me.
Genetics, exposure to other infections, other stresses on the body etc. have a lot to do with how sick one becomes.
My opinion is that many people who have been infected will eventually be negatively affected, often not knowing that it is lyme that is causing the problem.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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katc,
Yes, it is very common to have symptoms come in waves - and for traveling symptoms even from day to day sometimes - or to be better for stretches here and there.
You said you are trying to get information to diagnose yourself.
Good LLMDs are key to the diagnostic process. I'm a huge fan of self-education but you need the skills of an expert as well.
If you think you can diagnose yourself, take your homework in to a regular doctor and offer them what they need to treat you, that rarely works and puts you at a huge disadvantage.
As you said this "seemed to be better when pregnant" - that sounds like you are not now pregnant but, if so, I hope you can find a LLMD to help you ASAP.
I understand if money is a problem. But diagnosing one's self is dangerous. The thing is that if you EVER had a bulls eye rash, that certainly lyme. But there are other infections to consider, too.
So, you can certainly ask all the questions and do the homework. Even if you have all the symptoms and it all matches up there are several OTHER tick-borne infections (TBD) that often coexist. These are very hard to distinguish from one another.
A seasoned LLMD, who has seen thousands of TBD patients, will know how to sort this out.
This is no easy path. If you have lyme and dx and treat yourself, in emergency situations or situations that are exasperated by lyme, you put yourself at risk of emergency crews doing stuff that can harm lyme (such as steroids, etc.)
Lyme affects so many body systems that if you have heart trouble, a regular doctor usually would not know what to do and never consider lyme.
If you have any TBD, it is very important to get it documented in your file by a top notch specialist. The labs and specific tests used by LLMDs are far superior to those of regular doctors. And if the tests are not clear, a good LLMD can draw upon experience to figure this all out.
Once you have a clearer picture, there are a couple of ways to go for treatment. You will have some choices. But, please, consider seeing a expert for the diagnostic process.
This may not be lyme, or even any TBD, but a good LLMD will then know what else to consider as there are other chronic stealth infections that are similar (Cpn, HHV-6, mycoplasma). Most regular doctors know very little about those but most LLMDs do.
A certain amount of self-education before seeing the doctor is good but, believe me, a good LLMD has studied for YEARS and seen thousands of patients. My guess is that you have enough clues to certainly warrant getting properly checked out.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yep, I was bit when I was 14 years old. Went 10 years (I'm 24 now) with just little things here and there that were never attributed to anything except just daily aches and pains, etc. I just thought I was a hypochondriac while growing up because I'd always have something bothering me off and on, but nothing REALLY bad. When my heart started having palpitations really badly and then really bad muscle cramps I knew something was going on...
Then even after I got very ill, I'd still have bad and good days. It was very odd to me. I'd have like a week of horrible, sickly days and then have a week of okay days, and then the next week I'd go back down hill and feel awful. It is one of the most confusing diseases ever.
Even now, while on treatment, I have good and bad days. I have been having more good days recently, thank goodness.
It's just a disease you can never guess with. I wake up in the morning not knowing how I am going to feel that day.
It's a roller coaster disease, plain and simple. Like someone else said, it also depends on your immune system. There are some people with lyme who never experience a good day. And then there are those of us who exerience good and bad days and then there are the people who have lyme but have mostly good days (and therefore usually don't know they have it).... so, it's just different for everyone.
The bug does different things in each of our bodies, adapts differently, and our immune systems are all different and act differently when the body is invaded by some nasty bug....
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thanks to all, and I need to clarify that when I said I wanted to self diagnose I just meant I am trying to help determine if I should push for Lyme...after 16 years of this and doctor after doctor not helping me, besides saying I have fibromyalgia, I want to go to a doctor with a disease or syndrome that really fits my symptoms, because they always chalk it up to being a hypo, or crazy, or that I am a woman and women tend to worry, blah, blah, blah......So that's why I sk all the random questions, whenever I think of them, my memory is horrible, so I probaley sound like I am all over the place.
And I do want an LLMD but I can't find one in my area. Any here or nearby, don't take insurance, so thats a big NO for me.
Thanks again!
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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katc,
Understood.
Don't worry about sounding all over the place. That goes with the territory.
I fear most doctors will push you away if you "push for lyme" - what you can push for is asking your local - or closest lyme support group - for GPs who at least understand this.
Then, if you can get a LF (lyme friendly) GP to order the correct range of tests for various TBDs from the best lab (Igenex) . . . you might have a good start but, still, even the best tests are no guarantee as testing is not a perfect science.
At the risk of jumping to the lyme dx, I'd say you do present with lyme symptoms and are on the right path. But mycoplasma and Cpn also present similarly.
Did you EVER have a bulls eye rash? Not everyone gets that, but if you did, that is clear and would help for dx purposes.
Hope this works out. Please do keep moving forward on this. It is important that you NOT accept the dx for fibromyalgia. Many of us here had that umbrella dx, too. CFS is another one of the "covers what we don't know" trash basket dx.
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