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Old 08-17-2006, 09:46 AM   #1
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Post Waiting for lymes test

Hi,

I'm new to the board and was hoping to get some advice. I currently live in Ireland but spent a number of years living in North Carolina and am now wondering if lymes is the answer to the multiple neurological symptoms I've been suffering for about 6 months now. It started off very mild, with pins and needles and mild numbness but now the numbness is everywhere, I have alot of burning pain and am constantly dizzy. I've been checked out for MS, which was the initial concern, and everything ....Cat scan, MRI, VEP...looked normal. On my last trip to the neurologist (2 weeks ago), I asked about lymes and he very reluctantly took bloods for the test. I don't remember having been bitten by a tick but I used to get bitten alot by mosquitos etc. so it's a possibility.

Does this sound like lymes? Also, i know this is a long shot but does anyone know of any LLMD in Ireland or the UK? I have the feeling that it's something my doc will never have heard of, not to mind know how to treat!

Thanks

Olivia

 
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Old 08-17-2006, 10:41 AM   #2
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Re: Waiting for lymes test

Hi Olivia and welcome. Sorry to hear about your health troubles. Sounds awful!

Lyme is a tick bourne disease but it can be passed to a human other ways (like black biting flies), so a misquito bite would not surprise me.

I'm not a doctor, but your symptoms sure sound like Lyme to me! I had some of the same troubles you have. I've been on medicine (antibiotics) and I am starting to feel better. Hang in there!

I also had many tests to see what was wrong - MRI's, scans, etc. So many results and no answers. I saw at least 9 different doctors. So much time & money wasted and all I got was slowly getting worse and worse with no diagnosis.

There are two folks here in the UK that have Lyme. One is "janetclarkson" and the other is "battling on". I can't recall who their doctors are.

I do know that its important to see a doctor who is Lyme Literate. We call them LLMDs (Lyme Literate Medical Doctor). I do not know the names of the UK ones in my head. Hopefully someone will come along with a recommendation.

There is a sticky post at the top of this board with a list of symptoms. Lyme sure has a lot of them! There's also a sticky thread with a list of LLMDs. Maybe the UK doctor is listed there.

If you do get tested for Lyme, you may also want to be tested for co-infections. Alot of folks with Lyme have co-infections. There's a standard list of the co-infections to be tested for - but - my apologies - I can't remember it. Sry!

I hope you get some answers soon. Life is hell without your health!

Peace and health to you!

 
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Old 08-17-2006, 06:09 PM   #3
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Re: Waiting for lymes test

Hi Olivia, welcome to the board!

I am sorry you have been sick. Many people are bitten by ticks without knowing it. They are tiny and inject a numbing agent so you cannot feel them on you. Lyme disease can cause many symptoms. Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab.

I know of two Lyme doctors in the UK: Dr. Wright in Bolton, who runs a private clinic the Complete Fatigue Clinic and Dr. Owen in Cardiff. I hope you can see a knowledgeable doctor soon and get some answers.

It is also important to learn as much as possible. I recommend reading
"Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Burrascano's treatment guidelines at [url]http://www.ilads.org/burrascano_0905.html[/url] He is one of the top Lyme doctors in the US, and many doctors follow his protocols.

Hang in there okay?

 
Old 08-17-2006, 06:11 PM   #4
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Re: Waiting for lymes test

Olivia
Welcome to the lyme board.

The symptoms you describe could be lyme. I hope someone will come on and post the name of a Dr. soon. Jules (Battlin on) and Janet haven't been on lately I don't think. You might could put in their names and scroll thru their old posts to see if you see the name of their Dr.

Neuro problems are common with lyme. Blues gave good info. The threads are an excellent place to look. If we can help more, just let us know. We all have our ups and downs. We try to encourage each other.

Prayers...Marsha

Just saw ticker had posted. She is always so through.

Last edited by Pearlscale; 08-17-2006 at 06:13 PM.

 
Old 08-17-2006, 06:26 PM   #5
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Re: Waiting for lymes test

Hi Olivia,

Welcome to the board.

Ticker and the others have pretty well covered all the information. Only a Lyme literate doctor can make an proper evaluation, but you can look over the list of symptoms that Ticker posted. As you can see, Lyme can present in myriad ways and sometimes mimics other diseases.

Incidently, while there is a great deal of Lyme in North Carolina, Borrelia burgdorferi, which is the Lyme bacteria, is present in every continent. Although it is known for being prevalent in the Eastern US, over 300 strains exist throughout the world. The reason for this is migratory birds, who may travel for many miles and carry ticks. So it is entirely possible that you were bitten in North Carolina, but it is also not impossible that it happened in Ireland.

 
Old 08-18-2006, 03:07 AM   #6
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Re: Waiting for lymes test

Hello again,

Thanks everyone for the kind words and advice. I'll will get on the case of finding a good doc today.

I spoke to my own doc today, no news on the test results yet, but she said it was highly unlikely to be lymes given that it's been 2 years since I've been to the US. From what I've read on these boards, it seems that lyme can manifest years later....is that the case? Also, I have heard of a number of cases in Ireland, so it amazes me that the docs won't even consider it. From what I remember of attending docs in the states was that they are quite willing to listen to the patient, but here, they tend to dismiss anything you might say....very frustrating!

Test results should be back on Monday....don't know what I'm hoping for....part of me thinks if it's positive, at least I'll know what's causing this illness, but the other part doesn't want to have lymes.....what a quandry!

Thanks again

Olivia

 
Old 08-18-2006, 06:56 AM   #7
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Re: Waiting for lymes test

Hi Olivia....sorry to hear about what you are going through...hope you do find answers...and your right having the diagnoises of Lyme may not be what we all want to hear...but knowing that it is treatable is soemthing to help settle the mind alittle...When I was looking for help shoot I knew I had gotten bit...actually I had gotten bit about 4 years before but never heard of lyme...never worried about it...and I just found a lab test recently that showed I had lyme in 1989...but I was never treated for it...still can't remember why not...but then in 1992 I got bit by 3 of them and the same day I found them, it knocked me down...in 1999 I finally found a doctor that LISTENED to me...I kept telling all the 30 doctors (more or less) that I had been bitten...but my test from all the labs...Igenex...and the other two well known ones here...never showed a positive...I had BANDS...but no one would treat me...so I got sicker and sicker...nope doctors here don't listen either...sounds like they are the same all over the world....If your test come back negative and you still feel as though you have it then search high and low for someone to treat you...Or possibly think about trying the alternative meds and see if they work....

Good Luck to you hope you find answers....
p.s. yes lyme does lie dormant in your system...your doc needs to up date her/himself....

Jodie

 
Old 08-18-2006, 11:15 AM   #8
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Re: Waiting for lymes test

Hi,

Quote:
From what I've read on these boards, it seems that lyme can manifest years later....is that the case?
Yes, that is indeed the case. It can also manifest and then go dormant again, only to reappear later. The doctor you saw clearly is uninformed.

Quote:
Also, I have heard of a number of cases in Ireland, so it amazes me that the docs won't even consider it. From what I remember of attending docs in the states was that they are quite willing to listen to the patient, but here, they tend to dismiss anything you might say....very frustrating!
Believe it or not, a good many docs over here won't consider it either, even in places where it is rampant. In fact some of them are downright hostile over it. This has to do with pressure from insurance companies who have to foot the bill for treatment. Late stage Lyme is expensive to treat, and doctors are under pressure and tempted with financial incentives to not diagnose it. Not sure how they manage health care in Ireland, but that may be a part of it, some of it may be a matter of them not wanting to admit that they just don't know about it.

 
Old 08-29-2006, 06:02 PM   #9
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Re: Waiting for lymes test

Hi

So what were your results? I am waiting for mines also should be back in a two weeks...

 
Old 08-30-2006, 05:31 AM   #10
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Re: Waiting for lymes test

Still no word! My GP is calling the hospital today to try and track down the results.

 
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