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Posted 11/16/2013 3:41 AM (GMT 0)
my name is Carrie I am 41 years old

in 2007 we had a horrible problem with tics and

many other problems with an unsavory pest control co.

But the reason I am posting is because I started a new job at the same time and began to feel really tired and fatigued from the physical work it required.

I have always been a very high energy person and I just seemed to keep getting worse!

After 2 years of employment I just couldn't cope anymore!

I left my job and not much improved while I was sore fewer days out of the week I still had daily lower back pain!

Most recently I feel like my torso is in a vice, my feet and heels become extremely sore just laying on my bed I have to sleep with them up! pain in my hips, arms, feet,hands and legs sometimes trouble swallowing and spasms in my face! You name it it hurts!

I have been tested for MS! negative I have been checked for small cell lung cancer! negative

Can lyme disease stay in your body for 6 years and go undiagnosed at not do permanent  damage?

I have 3 boys one with autism who will always need me!

I just had titers done today and I am really scared!

Posted 11/16/2013 4:03 AM (GMT 0)
Hi Carrie, I'm sorry to hear about your health. Your story sounds alot like mine. I believe I have been sick with lyme since 2006. I was just diagnosed Dec 2012. I would wait and see what your various tests show. If you have lyme, good chances are your test will be normal. Mine always were sad Then it might be a good time to find a lyme literate doctor. Have you read over the "new to lyme" part of the forum? That might help point you in the right direction. Good luck to you and take care.
Posted 11/16/2013 7:27 AM (GMT 0)
Another thing to consider if there was mold where you worked and you have a genotype that does not detox it well.  It could explain feeling a bit better after not working at that job anymore, but still not feeling great.  Dr. Ritchie Shoemaker has alot on that.  Or...it could be both mold and lyme...or just lyme...or just something else...all the best with getting to the bottom of it!
Posted 11/16/2013 7:25 PM (GMT 0)
Hi Carrie,
Welcome to our community! I am so very sorry that you have gone through all of that!

First of all, yes, Lyme can stay dormant in the body, or at low enough levels to only cause some interference with our normal lives for many, many years in some cases. I'm one of those too. The good news is that this doesn't mean that you won't be able to heal though!!!

As SLML pointed out, you should check to see if you have been exposed to mold, as that complicates things and you will want to know about it in the beginning.

With your history of exposure though, you may have easily been infected with Lyme and other tick-borne infections.

It would be best for you to start out by reading our "New to Lyme? Start here!" thread as it has all kinds of important information, including symptom lists that you can compare to so that you can get a better idea of what you are dealing with.

about the blood testing for these diseases, please be aware that they leave a lot to be desired! Even the best blood tests are only looking for 4 or 5 strains of the over 300 strains worldwide.

The tests are looking for an antibody response, and the body can be so overwhelmed with the Lyme bacteria that it won't produce antibodies any longer. Many here have had that issue, including myself!

Unfortunately, no one can tell you if any permanent damage has been done until some time after you have completed treatments. I finished my treatments 1 yr and 11 months ago and am finding that my nervous system is still healing and getting better.

No for what I consider the hard news. Your son with Autism may have Lyme as well. There are a growing number of people who are realizing that for some autistic children, the cause is actually Lyme disease, but once treated, many children do much, much better. There are about 40% from what I last read that will at least show improvement once they have completed Lyme treatments. You may want to check out this site:
www.lymeinducedautism.com/

Now the best news - you are not alone!! We are here to help in whatever ways we can! You can come here to talk about your fears, hard times, good times, and when you need a shoulder to lean on by someone who truly understands what you are going through - we're here!!! So welcome! :-)
Posted 11/17/2013 10:48 PM (GMT 0)
Thank you so much for the HOPE!

I am in the state of Florida, Delray Beach to be more precise and would like to find a lyme literate doctor!

Also thank you for letting me know about the autism thing!

We will be looking into that!

1 of my 15 year old twins complains of knee pain often, if one of us has it, is it likely that we all do?

I woke up Saturday with sore gums and sensitive teeth and spots on my face has anyone else experienced this!

also one of my glands is swollen

I just seem to be on a slow and steady decline and really want to start getting treatment!

I think after all I've found out from all of you I would really like to find a proper doctor!

Thank you so much!

 

Posted 11/17/2013 10:50 PM (GMT 0)
Also no mold!

Sorry I am so overwhelmed with fear at this point I cant seem to remember anything!

Posted 11/18/2013 10:37 AM (GMT 0)
Hi Carrie,

If you are looking for a LLMD, it would be better (more visible to the other members) if you make a new thread called 'Looking for LLMD in_______'.

You will have to enable your email address so that members can send you a pm with the information you requested for (My Profile, then Edit Profile and choose Show my Email Address'. It's not allowed to publish dr's names and information about them on the forum.

Good luck!!

Oh, swollen glands are very common with these infections, the glands in my neck are always swollen...

Don't feel hesitant to ask questions, that's what the forum is for :-)

MarieLS

Posted 11/18/2013 11:09 AM (GMT 0)
Thank you!

I am new to this and not really good with computers my husband is a software engineer so I will ask for his help on how to do what you said!

I feel like my body is shutting down and I'm scared for my children especially my youngest who has autism!

he has a hard time comprehending and communicating!

It will be very difficult to treat him should we all have it which I fear!

The problem I spoke of with tics in my first post was in our home they were literally climbing the walls and the pest control co. used Dursband which is a nerve agent and a banned substance we were all tested for the presence of Dursband is our systems and we were all okay!

Apparently we did not escape the Lyme disease however!!

I have never felt so helpless or scared I look to be well but feel like I'm dieing inside!

Posted 11/18/2013 11:22 AM (GMT 0)
You are not alone :-)

Most of us here have felt as if we were dying at some point...........the great news is,it can and will get better once you're on the right treatment

I'm with the others,I would get your children checked as soon as possible if they have Lymes it is soooo important to get a plan of attack working.

All the best..........this is a great place for support,it saved my sanity.

Tickled
Posted 11/18/2013 12:38 PM (GMT 0)
Hello I have only just connected my symptoms to Lyme's & a lots of symptoms add up I have been ill for many years (with relaping & remissions) apart from fatique and pain has anyone had stabbing pains in leg (calf) which is intermitant I live in the U K & am going to try & find a Lymes Doctor
Posted 11/18/2013 1:50 PM (GMT 0)
Hi Jeanpipe!
Welcome!! We do have several members who live in the UK as well. I would suggest that you start a new thread asking for recommendations of doc's in the UK. All I know is that Breakspear has been very helpful to several members who live near there.

I would also suggest that you read through our "New to Lyme? Start Here!" thread that sits at the top of the forum. It's packed full of important information, including symptom lists (as Lyme is rarely the only infection passed), instructions to get you started detoxing (a common issue for those with these infections) and other helpful hints and information.

As we were saying to Carrie, you are not alone any longer!! We are here to help in whatever way we can. -even if you just need a shoulder to lean on! :-)
Posted 11/18/2013 1:50 PM (GMT 0)
Carrie, if you need any help in figuring anything out on the forum. please just ask!! Usually one of us can help figure it out.
Posted 11/18/2013 3:25 PM (GMT 0)
Hi Carrie, I haven't been on in a while but this was my lifeline going back 5 years ago when I was very sick. There are so many wonderful people here and you will find more answers here than any doctors office.

The good thing with lyme is that its a matter of finding out what you have and treating it from there. Once you do that, and it will take a while and alot of determination, you can get to feeling wonderful again.

An LLMD is crucial. There is just so many facets of this illness still new to the medical profession and many of us here have found alternative medicines to help along with the standard antibiotics.

Do your research. Read as much as you can. You will find amongst your research that lyme and coinfections affect every part of your body. On the brighter side, sometimes changing your eating and adding certain supplements can go along way to helping you to feel better while in treatment.

Hope today is a good day for you.
Posted 11/18/2013 3:39 PM (GMT 0)
Thank you so much everyone!!

Waiting for results from titers today!

As far as the children are concerned my husband thinks we should wait until I'm diagnosed?!

He doesn't want to put the kids through anything unnecessarily!

Is this a good idea considering most tests come out negative anyway?! 

wishing everyone on this site nothing but love and hope!

Thank you,

Carrie

Posted 11/18/2013 4:32 PM (GMT 0)
Carrie,
Personally, I would check their symptoms against the lists we have in the "New to Lyme?" thread and if it became obvious to me that they had these infections, I wouldn't wait for a diagnosis before starting treatments........ But- that has to be a decision between you and your husband. We are not here to pit you against him, that's for sure!!

If you are convinced that your children likely have these infections and should have treatment, and he still isn't, maybe you can get him to do some reading about these infections as well? If he sees enough, he will likely agree with you if your children have enough symptoms.
Posted 11/18/2013 8:49 PM (GMT 0)
Welcome Carrie!
I feel that I can relate to you so well! Thinking you may have lyme is scary but I must say not as scary as some of the many other illnesses I have come across while googling my symptoms. The problem with me was I had so many and doctors said that none of my symptoms fit together and pretty much thought I was nuts.

Anyway, I can not say for sure if what you are experiencing is lyme. My suggestion would be to rule out other things and do a lot of research on lyme symptoms! I remember first reading through the lyme symptoms list and thinking oh my gosh its like someone wrote down everything I have been complaining about all on one list!

My suggestion would be to find a good LLMD and ask him his thoughts about your children. Usually the tests the LLMD runs will be much more accurate as well.

I must say, you have came to the right place!! I have only been suffering for about 6 months but at about 3 months through I was sure I was about to die of something the doctors missed. I was doing HORRIBLE, crying daily because I thought it was the end for me, I didn't know what was wrong and I have 2 little girls that need me here.

Someone, I don't even remember who it was. But someone in this forum I owe my life! I had pretty much ruled out lyme because my doc said it didn't exist where I live. But for some reason I decided to make one post of my symptoms and see if I got a response and someone said to me " I was just diagnosed and that is EXACTLY my same symptoms" If it wasn't for that person I would probably still be crying and wondering and a mess like I was.

Sure enough I do have lyme! And everyone here has beeb SOOO helpful at answering my questions and getting me through, even on my crazy days! I really owe these guys big time! And I know they will be just as great and helpful to you!

Stay positive and I will do my best to help you in anywat I can. Just take it a day at a time. You are on the right track!!
Posted 11/18/2013 10:03 PM (GMT 0)
Wow HallieMae, maybe you should do a commercial for us?? Giggle!! wink

Seriously, thank you for all of your kind words from all of us here!! We do try to be as helpful as we can - we were once very scared and needing help understanding how to get through this maze ourselves! :-)
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