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Old 07-19-2006, 02:37 PM   #1
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sleepystardust HB User
Unhappy Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help..

Hi everyone,

I'm 16 years old and have been suffering from what was diagnosed as M.E/Chronic Fatigue Syndrome since i was 5. I've recently found out however, that i was never tested for Lyme Disease. I spoke to my M.E specialist, asking how likely it was i was suffering with this instead. He said it was unlikely as the symptoms i display do not match, although they do seem the same as M.E symptoms to me.. he also said that antibodies for Lymes are common in people in the South of England where i live and people live without any difficulty with this. Finally he said that there was no harm in being tested but if the results were positive this did not mean treatment was indicated or would even do any good.

I'm really confused by this and terrified i might have Lyme Disease. Is this something that could be fatal if i've been suffering for this long unaware? My mum informs me i spent time as a child on farms and around animals.. please help, i'm so concerned about this..

Thank you xx

 
Old 07-19-2006, 03:40 PM   #2
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help..

Hi sleepystardust, welcome to the board! I love your screen name

First let me tell you that if you do have Lyme, you can be treated. Many people have it for years before getting diagnosed. Lyme definitely is in England. I believe there is at least one member here from England.

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 Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. 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. In the U.S. IgeneX in Palo Alto, CA is a good lab.

I am not faimiliar with M.E. but many people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, ALS, and Lupus. What symptoms do you have? Below is a 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

Please share this information with your mum. Maybe you can find a Lyme doctor there who can test you.

Hang in there okay? Good help is available, and you are not alone. If you do have Lyme, with proper treatment you can get better.

 
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Old 07-19-2006, 04:09 PM   #3
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sleepystardust HB User
Re: Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help..

Thank you very much for replying, ticker.

I've copied and pasted the list you just said and left in the ones i suffer from:

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Unexplained menstrual irregularity
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
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

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

So, a lot of them really! But most are common with M.E too so all in all it could be very confusing. Also, after spending the last two days out in the garden i have three very odd bites on my ankles. At least, they look like bites. They're red, raised, itchy and sore and *blush* they're weeping a bit. This doesn't sound like a tic rash does it?

Thank you so much again for your lovely reply xx

 
Old 07-19-2006, 04:47 PM   #4
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Location: North Carolina
Posts: 1,247
Pearlscale HB User
Re: Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help..

sleepystardust
I love your name too. Welcome to the boards. I think the best advice is to seek out a LLMD. They are hard to find here in the states. Hope you find a good one and get started. Ticker gives good advice, so no need to duplicate it.
Prayers....Marsha

 
Old 07-19-2006, 05:12 PM   #5
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Posts: 10
sleepystardust HB User
Re: Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help..

Quote:
Originally Posted by Pearlscale
sleepystardust
I love your name too. Welcome to the boards. I think the best advice is to seek out a LLMD. They are hard to find here in the states. Hope you find a good one and get started. Ticker gives good advice, so no need to duplicate it.
Prayers....Marsha
Sorry, what is an LLMD?

Thanks so much for the reply xx

 
Old 07-19-2006, 06:44 PM   #6
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Location: Texas
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LexiLex HB User
Re: Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help..

Welcome sleepystardust!

LLMD stands for Lyme Literate Medical Doctor.

Alexia

 
Old 07-27-2006, 06:13 AM   #7
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Location: Lancashire, England
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janetclarkson HB User
Re: Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help..

Hi sleepystardust,

Sorry I've only just responded to your post but I have been on my hols and it takes a while to catch up.

I am also in England and I also was diagnosed as having ME/CFS. After 10 years of trying to struggle back to health I found out that I actually had Lyme Disease. It is harder to get rid of after all this time so it is important to find out for sure whether you have it or not.

The NHS is woefully inadequate when it comes to recognising and treating the disease. Most infectious disease specialists can't identify it and usually end up dismissing it because the outdated tests that they use come back negative.

I'm afraid that this means that you have to go private. There are only a couple of specialists operating privately and I know that one of them is unable to take any more patients at the moment.

But the other one, a Dr Owen, operates from Cardiff and would probably be nearer for you.

Good luck, and I hope that you find an answer soon.

Janet

Last edited by moderator2; 07-27-2006 at 10:33 AM. Reason: doctors names are allowed, discussions of their websites are not

 
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