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12/02/2008 13:26
zanapants
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I've just been diagnosed with Lyme based on lab results from IGeneX. I've suffered from unexplained moderate fatigue for 20 years but have no other symptoms of Lyme, and this diagnosis is very surprising to me. I don't doubt the lab results, but don't understand how I could have had this for so long and have no other symptoms. The fatigue is relatively constant but is not significantly debilitating ( e.g. I'm able to exercise 3-4 times a week). I've started taking antibiotics but am interested in hearing from others who have had only mild or moderate symptoms over a long period of time.

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12/02/2008 13:45
Clayton72
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Hey Zanapants...

I was fully functioning with Lyme for over 20 years and had no idea that I had it. I had joint pain for years but nothing that kept me from living a normal life. It wasn't until I became sleep deprived and underwent a major amount of stress that the Lyme really hit me, about 2 years ago.

It's very possible for it to lay dormant in your system. I didn't go the antibiotic route - I did a holistic treatment (intense 2 weeks) and I just follow it up with supplements now. I'm almost back to normal - I'd say I'm about 90% better. Hopefully you will have a quick recovery! Keep exercising! I quit going to the gym and my Lyme ended up hitting afterward.

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12/03/2008 07:38
cmany
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Zanapants...

Love the name .

Everyone is effected differently. You may be one of the lucky ones whose body has been able to fight the bacteria for years and keep it dormant...however, fatigue being a symptom that is among the 1st to appear and last to go away (in some cases), it may be a sign that your body is being worn down. For those whose body is able to manage on its own, will often have to experience some sort of trauma or as clayton said, stress to trigger a more active infection.

Whatever treatment approach you take, make sure you are supporting your immune system...it has supported you for a long time - so give it a hand. Watch the diet, water intake, and exercise...

Christine

I know what I am and I know what I am not

Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing

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12/03/2008 08:06
zanapants
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Thanks for your replies so far. After reading stories from other people on this forum I certainly do feel like I'm one of the lucky ones! I do feel like the fatigue has been constant regardless of stress level or other factors - is it possible for it to be this constant as opposed to having flare ups? How is it possible that my immune system has worked so well over the last 20 years even though I've had this disease? I hardly ever get sick and would guess that I'm in somewhat better health than most, but I'd think having chronic Lyme would cause me to be more susceptible to infection and poor health.

Has anyone had success with Coenzyme Q10 helping symptoms?


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12/03/2008 09:15
cmany
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Actually Zana...

I think it comes down to how well your immune system responds to illnesses of various types. For SO many who contract Lyme, their immune systems just dont recognize that there is even an infection. It could be a genetic thing, it could be the strain contracted. We know a family of 7 in which all were exposed multiple times and 2 of the kids have never contracted the disease - while the rest of the family had been devastated. My hubby has been exposed several times - he was a tree guy back in NJ and I had picked several ticks off him, PLUS my having it and the possibility of my passing it is there...and yet, he really hasnt presented with anything significant enough to make us jump on the Lyme road...however, over the years, he has had a couple of unexplain illnesses, a wicked bout of Giardia, and when he does catch colds and flus, he gets more sick then he ever did...so we all suspect that his immune system is able to manage it if he does in fact have it. And I will not be surprised if one day it catches up with him.

There are just too many unknowns still, compounded with halfassed info. You may just have really good genes giving you a really strong immune system.

I honestly cant think of a time when the fatigue hasnt been present for me to some degree. I have been using B12 sublinguals to help with that, with some success. When I was at my closest to remission, the fatigue was the last symptom present...the doc didnt want me off meds till it was gone...unfortunatly, i crashed before that happened...

As for CoQ10 - I have been on mass amounts of supplements in the past - and it was one of them...i know that it can be helpful, but I honestly cant remember how much so for me...

Anyway...hope this helps

Christine

I know what I am and I know what I am not

Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing

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12/03/2008 10:37
Clayton72
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Zana - your story sounds very, very much like mine. I had weird illnesses that hit every so many years but otherwise I was fine. I have always had a great immune system and had Lyme the whole time. It's the craziest disease ever! It's different strokes for different folks. Some people get infected and are almost disabled immediately while others live with it for over 20 years and are just fine for the most part.

When you start reading more and more about it, you'll understand it more.

As far as CoQ10 goes - I don't take it and I probably should. You just have to be careful with taking things that your body already makes. If you don't need to supplement yourself with it, your body will stop making it on its own. I was taking it when I was in my early 20s and my doc told me to stop and not take it until I hit my mid-30s because that's when we stop making as much as we used to.

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12/03/2008 13:27
Ret
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Hi Zana,

I have just joined this group even though I was diagnosed just 5 months ago, and I have learned more in the past week reading this forum and experiencing the kindness of the people on this site...Anyway, I was told that I was "chronic" but I didn't know what that meant. I have suffered from really low energy at many times in my life, so when I told my sister (who is an RN) that I tested positive for LD and experiencing extreme fatigue (among the headaches) she said that I was always kind of low energy ( cause I needed a lot of sleep-8-9 solid), but most of my family and friends continue to think of me as "strong", physically and emotionally.

But looking back over the last 10 years, I have had some really strange "sinus infections". This is what starts making you nutty because if you can't remember a tick bite, its like... when did I get infected??? Every vacation, business travel, hike in the mountains becomes the focus of this obsession; and then there is the little part of me that is in denial...oh the test from Ignenex is not "approved" so there fore it could be inaccurate...maybe its just hormonal and menapause...an advised (by my sister) sought out second opinion flat out told me..."you don't have Lyme, you're depressed!" (relief)

Anyway, like I said earlier in this post, I have had some great responses from fellow seekers and I am getting the hang of how to use this list serv. I will be posting many questions that I have regarding treatment and I may look for a LDMD. I tend to get a little indignant with my current physician, until I remember that they are suffering from LD too.

However it does get a little difficult for me to follow directions since we are both lyme dyslexic...

The mental confusion and fog are a whole nother story!

all the best and many thanx to all for reading


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