It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-04-2007, 09:59 AM   #1
Member
(female)
 
Join Date: Dec 2006
Posts: 64
alwayshotroddin HB User
How do you know if you have the disease?

Hi guys,

I'm stretching it at this point. I've made several other posts under different threads because my doctors have led me to believe I have had an inner ear disorder, hypothyroidism, low blood pressure, possible other hormone problems but everything comes back negative and it's been over 2 months now.

For the last 2 months these are the main symtpoms I have had:

-dizziness (sometimes it's bad where I have to grab on to something)
-"woozy", "out of it", "foggy" feeling
-hard time concentrating, memory issues in college
-weird anxiety, I LOVE shopping and now I get these weird muscle twitches and panic feelings when in shopping malls or grocery stores or even at home sometimes
-stomach problems (acid reflux, queasiness, nausea, "hungry" feeling but if I eat my stomach just hurts)
-fatigue - I feel like I could go back to bed the minute I get up but I'm not sleepy, just exhausted feeling

Recently in the last couple of weeks I've endured these symptoms:

-tinnitus (ear ringing slightly, notice it most when everything is quiet)
-arm twitching involuntarily, it comes and goes

I'm usually a very healthy preson, I eat right and jog/lift weights regularly (not to much now that I haven't felt well).

The only reason I am looking into Lyme disease is that I spent probably about 50% of my summer up in northern Michigan living in a cabin in the middle of the woods. My boyfriend does research for grad school in the summer so I spent much of my time up there visiting and needless to say the cabin allows many critters inside and I spent most of my day outside in the woods, by the river, and I know that I had to come into contact with random bugs, such as ticks. If I was bitten by a deer tick I do not recall it, and I never did have the rash that most people get with the deer tick bite, but my best friend has Lyme disease and she said that other insects, such as mosquitos can be vectors that carry the bacteria that causes Lyme disease. She went through several doctors and many years of illness before a homeopathic doctor finally diagnosed her with Lyme disease and we have very similar symptoms.

I know it's a stretch but so far my ENT and PCP have no clue what is wrong with me. I figured I'd see if any of you think might symptoms could be Lyme disease related?

Just a thought. thanks!

 
Sponsors Lightbulb
   
Old 01-04-2007, 04:20 PM   #2
Inactive
(male)
 
Join Date: Nov 2004
Location: Hanover PA
Posts: 281
Bill S HB User
Re: How do you know if you have the disease?

You might see if you doc would be willing to draw blood and sent it off to Igenex for a Lymes test.

 
Old 01-04-2007, 09:53 PM   #3
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: NJ
Posts: 1,945
6Blues HB User6Blues HB User6Blues HB User
Re: How do you know if you have the disease?

Hi alwayshotroddin and welcome.

Sorry to hear you've been ill with no reason why. I went through that also. It was awful.

I went to many different kinds of doctors trying to find out why I was sick. It took a long time and a lot of money.

I can't say whether you have Lyme or not. Lyme hits more than one body system so the symptoms can baffle doctors.

My symptoms were mostly ear & balance related with a strange rash and mental troubles like short term memory loss, confusion, fatigue, couldn't conentrate, could not pick the right word when speaking, etc.

I went about a year without a diagnosis and continued to get worse while waiting to find some doctor somewhere who could figure out what was going wrong with me.

Some folks here searched for as long as nine years before finding out they had Lyme. How awful that people have to search so long!!

The folks here understand how frustrating and awful it is to be sick and not have any answers.

The one thing I can say is that it may be worth your time and money to rule out Lyme.

I was tested by ELISA and Western blot methods by local labs here in New Jersey and they came back negative.

At the time, I did not know that Lyme testing is very unreliable. Eventually I had my blood sent to a lab called Igenex in California. It wasn't cheap - but I was so desperate I didn't care about money.

My Igenex results were positive for Lyme, even meeting the CDC requirements for positive.

However, some folks with Lyme will never test positive, even at Igenex, but it may be worth your trouble to get tested there. You can go to thier web site and read about thier tests. An M.D. has to draw your blood and sign for the test.

One thing that helped me was to see a Lyme Literate Medical Doctor (LLMD). A good LLMD will be able to determine Lyme irrespective of test results.

If you post your state and town, someone here may be able to recommend an LLMD.

I know the suffering and despair of being sick with no answers. Hang in there, Ok?

Whether you have Lyme or not, you have to keep searching and fighting for yourself.

Peace and health to you,
Mickie

 
Old 01-05-2007, 04:43 AM   #4
Senior Veteran
(female)
 
Join Date: Nov 2004
Posts: 1,215
sleeperwoken HB User
Re: How do you know if you have the disease?

Hi alwayshotroddin, welcome to the board. I had lyme for over 20 years before I got a diagnosis and I went through all those symptoms and more. I would definitely get to a good, knowledgeable lyme doctor and get tested right away.

Not everyone gets the rash or sees a tick, so don't go by that and don't let a doctor go by that either. If you have the symptoms, which you do, then they need to listen to you and get you some help soon.

Is there an LLMD in your area? Call soon, sometimes it takes a little while to get an appointment.

 
Old 01-05-2007, 05:05 AM   #5
Member
(female)
 
Join Date: Dec 2006
Posts: 64
alwayshotroddin HB User
Re: How do you know if you have the disease?

Hi everyone,

Thanks so much for all the great advice!! My doctor is going to do a Lyme test with my blood but I highly doubt he would send it out to California. I'll definetely have to look into that. I never did see a tick or rash BUT last May I did get bit my something on my leg (up near my bum lol) and at first I thought it was a mosquito bite because it hurt and itched real bad and was pink and swollen. After a couple months of that I thought it was a nasty spider bite and eventually it got smaller, turned brown, and got harder. I thought maybe it was a strange mole and never thought anymore of it. I told my mom about it last night and she looked at it and said it looks like scar tissue to her. I have no idea if a tick could do that but I suppose other insects could and potentially transfer some kind of infection?

I have no idea if there is a LLMD in my area. I live in Fort Wayne, Indiana which is a very large city but there is no Lyme doctors listed in the phone book. I'm assuming a Lyme doctor is probably also a general physician? I'll make another post on here to see if I can find anyone in this area that knows of a good LLMD.

I'll remember Igenex also and talk to my doctor about it. My best friend has Lyme's disease and went several years without being diagnosed. Oddly enough a homepathic doctor finally diagnosed her. I don't know much about those doctors but she swears by them?

I don't have any muscle aches that are common with Lyme's. That is the only thing that is holding me back from wondering whether I might have the disease. My back and neck get stiff but nothing flu-like.

Thanks again for all the great advice!! You guys are life savers, I would have never thought of any of that.

 
Old 01-05-2007, 01:32 PM   #6
Inactive
(male)
 
Join Date: Nov 2004
Location: Hanover PA
Posts: 281
Bill S HB User
Re: How do you know if you have the disease?

Try going here for a LLMD referral:

[url]http://www.lymediseaseassociation.org/Doctor_Referrals.html[/url]

You won't find a LLMD in the phone book under Lyme or anything; it's an informal term, not endorsed by the medical societies. A LLMD can be of many different specialties. I've seen them as a sport doctor, mine is a Rhematologist and Internal medicine guy. The previous one I saw (before he moved on me) was a Gastroentinologist (he got Lymes, as did several people on his staff, which motivated him to learn more about it).

I HIGHLY recommend you spend the money and pay for the Igenex testing yourself; they're alot better and more consistent than most labs. I don't think they take insurance, but the quality of the results can be alot higher, and they come highly recommended in the LLMD world. If you won't use Igenex, make SURE you get the actual results with all the "banding information"; shows which bands were positive; the CDC wants 5 bands, and many ignorant docs will insist that if you don't have 5 bands you don't have Lymes, which is a load of crapola. That way if you have the actual test results you can later show your LLMD the results and maybe save alot of time and hassle.

You don't want to delay with this disease; it's a nasty one once it gets into you.

Last edited by Bill S; 01-05-2007 at 01:33 PM.

 
Old 01-05-2007, 02:02 PM   #7
Senior Veteran
(female)
 
Join Date: Aug 2004
Posts: 1,477
ncgirl88 HB User
Re: How do you know if you have the disease?

Hi Always,

Sorry to hear you are feeling so sick.

Just wanted to add that all tick borne illness should be a clinical diagnosis first. Blood testing and other tests are definitely good to run but can be inaccurate.

I had three through conventional labs...one of them was run through a very well respected hospital...all were negative - even for coinfections like Babesia and Ehrlichia.

Went through IgeneX and I Lyme was positive although not by CDC requirements...Babesia FISH stain test was positive while the typical blood test was negative and I had two forms of Ehrlichia that I was positive for.

You can imagine before I started treatment how confused I was about how I should proceed.

I chose to proceed with my LLMD's advice and started tX and I had severe herxheimer reactions but I barelled through them and kept up with the treatment and eventually I had very small reactions and eventually virtually none with treatment. This was proof that I did have these infections.

Hang in there. Be sure that you get tested for Babesia and treated if you have it first before proceeding with Lyme and other coinfection treatment. The parasite needs to be eliminated first with antimalarials before antibiotic treatment be given otherwise antibiotic treatment will most likely fail.

Take care!

 
Old 01-07-2007, 05:26 AM   #8
Member
(female)
 
Join Date: Dec 2006
Posts: 64
alwayshotroddin HB User
Re: How do you know if you have the disease?

Thanks guys for all the helpful info. Bkwhite, I am actually from northern Indiana (Fort Wayne) but spent much of my time in Grayling, MI last summer. I did notice that there is an LLMD in Saginaw, MI and Grand Rapids, MI... if I do in fact decide to see an LLMD I'll try and go to the one in Saginaw since you recommended him.

This is all a waiting game for me now. My PCP wasn't in last Thursday and was extremely busy Friday (of course) so I'm going to get my blood drawn tomorrow finally but I know it takes several weeks to get the results back. I think what I'm going to do is start with his blood test (whatever it might be) and if it comes back negative then I'll look into Igenex.

As much as I don't want to have Lyme disease it would be comforting to put a name with how I feel. The frusterating thing is some days I feel better than others so my parents don't know whether they want to waste the time and energy in driving to Saginaw and having labs completed at Igenex.

Thanks again for all of your helpful advice!! I think this is a wonderful forum. I feel better just knowing there are other people out there willing to pass advice and info on to others to help them understand what they are going through. One great thing about the Internet.

Last edited by alwayshotroddin; 01-07-2007 at 05:27 AM.

 
Old 01-08-2007, 02:20 PM   #9
Senior Veteran
(female)
 
Join Date: Aug 2004
Posts: 1,477
ncgirl88 HB User
Re: How do you know if you have the disease?

Hi Always,

One more thing...I don't remember the initial bite at all that got me so sick initially. However after a long stretch of treatment I was feeling better...so on a really nice day I went out to repot some plants in our driveway.

I decided to clip some bushes outside and did it without protecting myself with tick spray. I found an embedded tick on my tummy the next morning. I removed it carefully and properly but had a rash very similiar to what you are describing. It was red, itchy, and hurt. Then after six weeks it turned brown. It has taken almost a year but it has finally almost disappeared.

It was a lone star tick that bit me...the kind with a little white spot on it's back if it is a female, they are kind of rusty colored...anyway many feel this tick carries a 'lyme-like' disease called lonestari and there is no testing for this yet.

Keep that in mind. No test is infalible and your doctor or LLMD needs to understand the symptoms of tick borne illness and not just rely on test results.

Take care!

 
Old 01-09-2007, 04:32 AM   #10
Member
(female)
 
Join Date: Dec 2006
Posts: 64
alwayshotroddin HB User
Re: How do you know if you have the disease?

ncgirl,

How big was your rash? My bite was not very big... it looked like a mosquito bite so I originally thought it was just a spider bite. I think I'm going to call my dermatologist today and see what she thinks. I've never been bit by something that leaves scar tissue - and in such an unusual spot... my bite was on the side of my upper thigh, up near my underwear line.

 
Old 01-28-2007, 12:30 PM   #11
Senior Veteran
(female)
 
Join Date: Aug 2004
Posts: 1,477
ncgirl88 HB User
Re: How do you know if you have the disease?

hi there...

sorry i did not reply until now...

i never had a rash. i do have a little bump behind my knee that I suspect could be a possible bite but I never removed an embedded tick.

the only bite i remember is one on my head when i was 9 years old.

take care

 
Old 04-04-2007, 04:26 PM   #12
Member
(male)
 
Join Date: Mar 2007
Location: Fleetwood, PA, USA
Posts: 55
DavinoPA HB User
Re: How do you know if you have the disease?

Quote:
Originally Posted by ncgirl88 View Post
Hi Always,

Sorry to hear you are feeling so sick.

Just wanted to add that all tick borne illness should be a clinical diagnosis first. Blood testing and other tests are definitely good to run but can be inaccurate.

I had three through conventional labs...one of them was run through a very well respected hospital...all were negative - even for coinfections like Babesia and Ehrlichia.

Went through IgeneX and I Lyme was positive although not by CDC requirements...Babesia FISH stain test was positive while the typical blood test was negative and I had two forms of Ehrlichia that I was positive for.

You can imagine before I started treatment how confused I was about how I should proceed.

I chose to proceed with my LLMD's advice and started tX and I had severe herxheimer reactions but I barelled through them and kept up with the treatment and eventually I had very small reactions and eventually virtually none with treatment. This was proof that I did have these infections.

Hang in there. Be sure that you get tested for Babesia and treated if you have it first before proceeding with Lyme and other coinfection treatment. The parasite needs to be eliminated first with antimalarials before antibiotic treatment be given otherwise antibiotic treatment will most likely fail.

Take care!

How long, may I ask, did it take for you to feel better?

 
Old 04-07-2007, 01:03 AM   #13
Senior Veteran
(male)
 
Join Date: Jan 2006
Location: illinois
Posts: 676
comeandrelax HB User
Re: How do you know if you have the disease?

wait.....what do you guys mean when you say that normal lyme disease tests aren't accurate and you have to go to a certain place to get correct ones? why wouldn't they be good tests in normal places? don't you think that lyme disease is taken seriously and that doctors wouldn't have you test for it and tell you negitive when they aren't sure if its true? if we at healthboards know how the tests are don't you think doctors do too?

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
dont know what wrong mw1 Addison's Disease 2 01-11-2010 07:17 AM
Would anyone know answer to this,kidney stones Gram4 Kidney Disorders 4 05-19-2009 06:45 AM
I don't know what else to have done BorkBork Lyme Disease 18 12-20-2006 01:03 PM
Confused newbie don't know what I am MKMaggie Thyroid Disorders 13 08-07-2005 05:35 AM
I don't know what to say but I am saying it with tears dealer1111 Lyme Disease 17 12-28-2004 05:45 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



jojo (69), jenj770 (45), tess201 (30), ticker (14), Administrator (11), 6Blues (9), annalisa9397 (7), dganz (5), Katherine777 (5), lala52 (5)

Site Wide Totals

teteri66 (1180), MSJayhawk (1005), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 02:41 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!