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Posted 8/18/2009 7:04 PM (GMT -5)
about four months ago i got bit up bad by a few ticks-not long afterwards i came down with what i thought had to be the flu,which was kind of odd because i was sick not long before that.After this 'flu' went away i went to take a shower and realized that i was so dizzy,i had to put my hand up against the wall so i wouldn't fall down.Right after that  i noticed that i was beginning to feel really really tired,like ive never felt this darn tired in my whole life-my arms,my legs,my neck,everything just felt so heavy,like my joints were rusting up.And the dizziness was getting worse and worse.Everyday it was something new;strange tingling sensations in my feet and other parts of my body,my arms and legs would go numb,and sometimes it would just be one side of my body.My heart's been palpitating and i don't sleep anymore because i twitch and it jolts me out of sleep.The dizziness doesn't stop and neither does the pain in my joints and in my head,a throbbing pain in the back and on the sides.I had breathing problems before but now it's gotten to the point where i go to sleep at night not knowing if im going to wake up and im so scared.I was tested a little over a month ago for lymes and the test came back negative.Could it still possibly be Lymes? does a false negative happen from time to time?? im desperate for answers because this is ruining my life.I can't even remember what it felt like before the pain and the misery...Does anybody know how i feel?? 

~J.Rabbit

Posted 8/18/2009 7:14 PM (GMT -5)
Hi JRabbit,

Welcome to the forum! We are so glad that you found us:)

You do seem to have alot of the classic Lyme symptoms. Do you have a copy of your Lyme test?Many of us here had a negative test but do have Lyme. A good doctor would look at the bands that are positive on your test. Some bands are Lyme specific that's why it's important to see a Lyme Literate Medical Doctor. Most regular doctors do not know how to read the test and look further and take your symptoms into consideration too.

Are you seeing an LLMD now? If you need one, let me know.

Below is some great information to help you on your Lyme journey:

ILADS is also a great site to find information:
http://www.ilads.org/

For even more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.
Posted 8/18/2009 7:36 PM (GMT -5)
Thankyou so so much for the welcome,Cajungirl:)

i don't have any of my tests/records,but i can get them with no problem.I didn't think to do so at first because the doctor that ran the tests just seemed to shrug the whole possiblity of it being lymes off.I figured,'well he's the doctor,the blood doesn't lie...' you know? but jeez i feel so strongly that it is.If it is,fine,i can deal-i just want some answers and some relief! i have lots to do,but this is affecting everything in my life;i had to quit my job,i missed school,i can't drive because of the dizziniess...i'd love some help,that's all.I really appreciate you replying to my post,and thanks alot for links!:)

~J.Rabbit

Posted 8/18/2009 7:43 PM (GMT -5)
Your symptoms do sound like classic lyme. I had an array of weird symptoms, and because I never had a rash nor did i pull a tick off of myself I did not even think about lyme. The neurologist I went to see was able to figure it out. One of the many symtpoms I had was feeling like my limbs were heavy - like a paralyzed feeling.

Welcome to the board and yes...I can relate to how you feel.
Posted 8/18/2009 8:18 PM (GMT -5)
Welcome,
Definitely get a copy of your test results. I was told my test was negative yet found out from my Ob/Gyn who saw the results ,that my titer was High Positive and had a band present on my WB. Most labs are unreliable when it comes to accurate testing. By your symptoms it definitely sounds like Lyme to me. You are smart to follow up on this.
Posted 8/18/2009 8:33 PM (GMT -5)
everything you explained is what happened to me in may and june.. I was super dizzy all day, (i had to push through it) i became tired and weak (not like me) my chest hurt, started having back aches, muscle spasms. Tingles, numbness, loss of appetite, no sex drive.. yeah, i lost my g/f and some of my life i can't get back.. I could've lost my job also, but i actually pushed myself very hard to find help and have the right tests done.. My first doctor which is a regualr doctor did lymes test, and it came back neg.. I saw the test, i still wasn't happy.. I knew i had to take control of this.. thanks to the help here, i found the right doctor and had the right tests done.. Which came back positive.. the thing is, if you have had ticks on you, and now you are sick..something is probably up with that.. do the Western Blot test.. its worth it, get on doxy now, who cares, just ask for it..

I was like you, now i'm doing way better.. i'm still recovering, but i feel 10X better.. Have them run the EBV test also.. check b12 and Vit D levels also.. mine were all low..
Posted 8/19/2009 1:59 AM (GMT -5)
J.Rabbit

welcome to the board. like the other have stated more lyme test are off. i even had a positive test and the ID i was sent to kept telling me it was a fales negative. so if your able to go to a LLMD plz do so.

and yes most all of us here know just how your feeling as we are in the same boat so to speak. as for the dizziness my PCP gave me meclizine 12.5mg. you can get it OTC. you may want to try it.

i hope things work out for ya soon.
Posted 8/19/2009 8:28 PM (GMT -5)
I'm so glad i found to this forum.I can't thank all of you enough for the advice and support and all your positivity:) for the first time in months i don't feel so alone anymore.I would try to explain to family and friends that something wasn't right,that i wasn't okay and everybody's been treating me like i belong in a padded cell,or something.It's very frustrating.I'm only 22-i have so many plans and right at the point when im supposed to be out there pursuing my dreams,im stuck having to grapple with this.I have no job.No working car.NO HEALTH INSURANCE.Getting these doctors appointments,finding the right doctor and then figuring out a way to pay for all these tests...it's been tough.The pain is still there and it makes me feel seriously depressed...i mean forget about depression issues as a teenager,that doesn't even come close to it...but i don't feel so hopeless anymore.Reaching out is so important and i've lost enough already.A few days a week i do secretary work for my grandmother,she pays me about once every two weeks.I'll start using that money to pay for my tests and doctor visits.There may be some light at the end of this tunnel just yet:)

~J.Rabbit
Posted 8/19/2009 8:41 PM (GMT -5)

3whiteroses said...
Your symptoms do sound like classic lyme. I had an array of weird symptoms, and because I never had a rash nor did i pull a tick off of myself I did not even think about lyme. The neurologist I went to see was able to figure it out. One of the many symtpoms I had was feeling like my limbs were heavy - like a paralyzed feeling.

Welcome to the board and yes...I can relate to how you feel.

...i keep hearing so often that in almost all folks infected with lymes notice a bulls eye rash that develops in the the infected area soon after the bite-the tick that i pulled off of me was attached for about 24 hours,(i made the mistake of falling asleep wearing the same clothes i wore to walk my dogs.) The tick was on the back of my neck smack dab in the middle of a large tattoo that i have back there,so it made it very hard to look for any redness.But it did leave a bump that didn't go away for weeks and weeks;it would raise and feel irritated and then go back down,and then raise again.So no redness that i or anyone could see,but defintely irritation in that spot.

~J.Rabbit

Posted 8/19/2009 8:43 PM (GMT -5)
i know how you feel about people not responding to how you feel..i was depressed in high school or depressed over a break up with a g/f or depressed over money issues.. The lyme took the cake.. I was so depressed about everything, i thought i was actually going to die! everything was negative. it really sucked! i'm getting by,

i had more issues than playboy.. seriously! i lost so much, but i gained alot after i think about it.. I'm smarter and stronger!! no question about it.. Thanks to everyone here!

I think the western blot test is 240 dollars, but getting to a doctor and getting them to give you doxy shouldn't cost to much.. i would just do that before anything else..
Posted 8/20/2009 2:13 AM (GMT -5)
J.rabbit,

My heart aches for you! We all know the pain you are describing and it really hits home.

If your tests came out negative for lyme, ask for the results first; second, look at the lab used (I believe Igenex is the one preferred), next, see another doctor with lab tests in hand. My results showed positive on many levels but it takes an experienced doctor to read them. I know that there can be false negatives as well.

From what I know; you seem to have the classic symptoms. Find a doctor that knows his stuff!

I have just learned this from this forum so you picked a good place to seek advice.

Another thing to explore is the other forums on this site: Chronic Fatigue Syndrome and Fibromyalgia have similar symtoms.

The thing that stands out over those possible diagnoses is that you know you were in fact bitten by ticks! I would think that would carry a lot of weight with doctors that are "in the know".

I can tell you that CajunGrl has a lot to offer. Take advantage of that resource and let her help you find the right help!

Best of luck to you...don't worry, you'll beat this!
Posted 8/20/2009 3:02 PM (GMT -5)
There's a lot of misinformation on the internet, too.

The tests for Lyme are only 30% accurate (where an HIV/AIDS test is 99.5% accurate). So a negative test means absolutely nothing! And it's unfortunate.

The classic bullseye rash is found in less than half of patients as well. Your symptoms are classic however.

You could also have been coinfected with other bacteria and viruses, along with Lyme, causing symptoms.

Most Lyme docs do not take insurance and costs really do add up. My suggestion is to save your money for a LLMD (Lyme literate medical doctor) who can diagnose you (or rule it out) clinically and forget about the Lyme tests--they're junk.
Posted 8/20/2009 4:06 PM (GMT -5)

hi, if I could turn the clock back - with the knowledge I have now about lyme - I would prioritise getting some 'doxycycline' antibiotics - then find a lyme literate doctor [LLMD.]

best wishes - gorbs

 

Posted 8/21/2009 5:24 PM (GMT -5)

james from missouri said...
i know how you feel about people not responding to how you feel..i was depressed in high school or depressed over a break up with a g/f or depressed over money issues.. The lyme took the cake.. I was so depressed about everything, i thought i was actually going to die! everything was negative. it really sucked! i'm getting by,

i had more issues than playboy.. seriously! i lost so much, but i gained alot after i think about it.. I'm smarter and stronger!! no question about it.. Thanks to everyone here!

I think the western blot test is 240 dollars, but getting to a doctor and getting them to give you doxy shouldn't cost to much.. i would just do that before anything else..

You talk about thinking that you were going to die,omg don't even get me started on that! i've had SO MANY nights like that and it's no fun at all.I'll tell you honestly every morning i do wake up to see the sun,im surprised as all hell.Thankful,but surprised.Getting through the nights have been rough,because i usually start to feel worse when the sun goes down.One thing that has changed for the better would be my closeness with my friends and family.I made it a point to talk to people more and to tell them how much they really mean to me because i felt like i might not be here tomorrow to say it.That's what i've gained throughout this whole thing.

Before i was tested i was on Doxy( i can't believe i failed to mention this earlier,)but i was taking it and i started to feel so much better! But a couple weeks after taking it i found out everything came back negative.I got so discouraged,i stopped taking them and fell right back down.Back to square one.No answers and still in pain.Yesturday was my very last day of school,so im graduating to get my hs diploma so that's one less thing to worry about.Im working and when i get enough saved i can get these tests done.In the meantime,i'll get another prescription for the doxy:)

Posted 8/21/2009 5:28 PM (GMT -5)

LadywLyme said...
J.rabbit,

My heart aches for you! We all know the pain you are describing and it really hits home.

If your tests came out negative for lyme, ask for the results first; second, look at the lab used (I believe Igenex is the one preferred), next, see another doctor with lab tests in hand. My results showed positive on many levels but it takes an experienced doctor to read them. I know that there can be false negatives as well.

From what I know; you seem to have the classic symptoms. Find a doctor that knows his stuff!

I have just learned this from this forum so you picked a good place to seek advice.

Another thing to explore is the other forums on this site: Chronic Fatigue Syndrome and Fibromyalgia have similar symtoms.

The thing that stands out over those possible diagnoses is that you know you were in fact bitten by ticks! I would think that would carry a lot of weight with doctors that are "in the know".

I can tell you that CajunGrl has a lot to offer. Take advantage of that resource and let her help you find the right help!

Best of luck to you...don't worry, you'll beat this!

Thankyou so much! i haven't been here too terribly long,but the feedback and the help that you all have given me has been so wonderful and uplifting.I've been in a pretty lonely place the past few months,but you all have helped me so much! i have a feeling things will slowly but surely be getting better;atleast i hope so:)

~J.Rabbit

Posted 8/21/2009 7:10 PM (GMT -5)
Get back on the doxy ASAP. I'm still on it....started the middle of June. I don't see a LLMD don't really need to because my Lyme was caught in 1st stage maybe late 1st stage and only had extreme fatigue, tremors and fever none of the other problems your having so a LLMD may be necessary for you.

Still tired and find myself not wanting to do much of anything, but not nearly as bad as I was before.

Don't wait around for lab tests for a diagnosis get back on the Doxy>>>>>>>NOW.

HW and the members have been a Godsend, hang out here and ask away you will always get answers and expert advice. I did and am better because of it.
Almost everyone here knows more than my doctor.

Jane
Posted 9/3/2009 9:50 PM (GMT -5)
When i was first put on the doxy,i began to feel alot better.I was half done with the bottle when i got the results back from my test and it was negative.I got frustrated and stopped taking the doxy,but a few nights ago i became so desperate that i decided to just finish off the bottle...now im completely screwed up on the dosage because it was over a month ago that i stopped taking it.I don't even know how long im supposed to take it for.Should i try to get more to balance things out??...or should i stop,wait a while,and then start all over again?? i don't really know what to do here..
Posted 9/3/2009 10:07 PM (GMT -5)
what testing do you do? if you did the regular EIA test, that test is no good.. if you did the western blot test, can you post your results? if not, do that test next, but through IGENEX, they are more sensitive to lyme. Also, just get back on doxy at 300-500mg a day for 4-6 weeks, by that time the WB test will be back, So you can see your IGG AND IGM resutls, and see if your dealing with an acute infection or chronic one..

i recently found out that band 30 is EBV virus from the Igenex website. Did you get tested for that?
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