I'm very worried / stressed about a potential lyme diagnosis and thought I would throw my story out there. I worked outdoors in Wisconsin 3 summers ago and had many ticks on me ... never the rash. But I know this doesn't mean anything. I was symptom free for the first 1 1/2 or so. For the last year I've had lots of symptoms, but they seem to last for about 1 month and then completely go away for about 2 months. Symptoms are mostly neurological (lots of tingling/numbness, strange headaches, dizziness at times, feel wobbly when walking). In the past I've also had chest pain and lower abdominal pain that went unexplained after lots of doctor's visits. That said, none of these things keep me from doing what I need to be doing. So I guess my symptoms so far are mild.
I'm getting the IGeneX test done in one week and I've had two positive ELISA's (but negative Western blots) These were done at Quest, so I realize not to take them seriously.
I also have a 10 month old baby that I am still breastfeeding. I had no idea about potential lyme until a few weeks ago and I'm waiting to see what my diagnosis is before I decide what to do about nursing. So far, my baby is completely healthy. I wonder how I would get him tested since he would have my antibodies anyway? Also, if he did have lyme would it make sense to treat him if he is asymptomatic?
And as far as my treatment ... should I treat if the IGeneX results come back positive even if I'm not having any symptoms at the time? Since I'm having neurological symptoms, do I likely have a long, long road ahead of me?
THANK YOU for listening!!
Posts: 8 | From Portland, Oregon | Registered: Mar 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet!
Sorry the first one to greet you was Lyme tutu. We do love her but she does have a habit of dropping her drawers all the time. But she otherwise is very smart and knows a lot about a lot.
You said...
"For the last year I've had lots of symptoms, but they seem to last for about 1 month and then completely go away for about 2 months."
This is a pattern that can be associated with Lyme and/or coinfections. So it is good you are checking it out.
I use to finally get tired of symptoms.. and just about the time I would break down and make an appointment to have them checked out.. they would either fade off.. or change to different symptoms. Talk about trying to keep your sanity!! NOT easy when that is going on!
You said you've had 2 positive Quest tests. In MY opinion.. they usually have many false-negatives.. NOT false-positives. So if you have been tested positive.. another good reason to suspect Lyme.
And you mentioned being in WI. That is one of the hot spots for Lyme.. so reason number three to check into it.
Your smptoms sound a bit like they could be related to Lyme too. You said..
"Symptoms are mostly neurological (lots of tingling/numbness, strange headaches, dizziness at times, feel wobbly when walking). In the past I've also had chest pain and lower abdominal pain that went unexplained after lots of doctor's visits."
IF you have Lyme and it goes untreated your symptoms could become worse with each episode... so do not take it lightly. Also the time between "bouts" of symptoms can become closer and closer over time.. so that few if any good days remain. We don't want that to happen.
As for the baby.. bless your heart. Good sign that all is well now.. but do have him checked per Dr. Jones instructions. Sometimes it takes a couple of years to show up.
You said.. "should I treat if the IGeneX results come back positive even if I'm not having any symptoms at the time?"
That is between you and your doctor.... but with what I am seeing here.. I would. I am NOT a doctor and this is only my opinion.
It is hard to say.. no impossible to say... how long a road you may have if you have Lyme.. but.. the good news is.. as time goes on we are learning more about what works and how to do it.
YOU have something else going for you that many don't have. A willingness to learn and act on it. Good for YOU!!! That will be your best help.
And you have found others in the same boat to talk to.. so maybe that will help too.
I also picked up my Lyme in Wisconsin(1987) while working there.
Our son was born after I was infected by Lyme. We didn't know he had Lyme until he was in Jr high school and was having issues. We flew him out to see Dr. Jones in CT and he is fine now and in college. He still has Lyme, but it is under control.
Definitely get the Western Blot from Igenex as you are planning to do. As far as breast feeding, our son was breast fed. I do not know if that would have changed anything. Dr. Jones felt that our son was born with Lyme.
I agree with Lymetoo and Tincup, talk with Dr. Jones. He has helped thousands (literally) of children with Lyme, he is the best!
From my experience, the neurological symptoms will just get worse if you don't treat the infection. I would treat aggressively after you are finished nursing. The Lyme will just wear your system down and ultimately win, unless you fight it.
Hope this helps...
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Welcome!
If you haven't already... Contact The Oregon Lyme Disease Networkwww.oregonlyme.org
Theresa is wonderfully helpful.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Wow, so many people got Lyme in Wisconsin, so did I. It's amazing how little the Drs know about it here!!!
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