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Old 03-11-2007, 10:57 PM   #1
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Join Date: Jan 2007
Location: Pennsylvania, USA
Posts: 40
*Robin* HB User
Question Could this be Lyme - Please help!

Hi, Iíve never posted on the Lyme forum before, but I am hoping that someone can help me figure out what has been causing me 4 months of weird, out of the blue symptoms.

Iíll try to make this as short as possible. Iím 24, and have had no major health issues with the exception of kidney stones prior to the onset of these symptoms.

On Thanksgiving Day, I started getting pain in my left shoulder and on the left side of my chest. The next day the pain continued and I also had shortness of breath, so I went to the ER where they did an EKG, a Chest X Ray and Blood Tests. All the tests were normal, and I was told it was probably Costochondritis.

The chest pain continued, and I saw a Cardiologist a few days later. He sent me for a CT Pulmonary Angiography (with contrast), and a Doppler Test on my legs to test for a blood clot, since I had been using birth control pills the month before. Both tests were normal. He also did an Echocardiogram, which he said was normal.

Since then, I have seen many doctors, including another Cardiologist, who has done an EKG, another Echocadiogram and a 24 Holter Monitor. He thinks I have Mitral Valve Prolapse (even though my Echos have never shown it). Basically, I donít want to be diagnosed with something that I may not have.

Since Thanksgiving, I have had pain in the following areas. They are not all the time, and they can last anywhere from hours to weeks

Pain in Chest, Sternum, Ribs, Arms (shooting pain), Knees, Shoulder blades, Neck and Back, Hips and between wrists and elbows. I have Shortness of Breath, Dizziness, Heart Palpitations and "skipped beats", Tingling in Hands and Feet, Burning sensations, Tenderness under arms on both sides, Pulsing sensations, Stomach Pain, Headaches (different pattern than my usual headaches that Iíve had in the past), and Vibrating sensations.



I have had the following tests

EKG
2 Echocardiograms
Stress Test
24 Hour Holter Monitor
MRI of Brain (no contrast)
MRI of Cervical Spine (no contrast)
MRI of Thoracic Spine (no contrast)
CT Scan of Stomach (swallowed contrast)
EMG
EEG
Tests for Lupus and Lyme Disease

Another thing is recently I have been having these "episodes" where I feel really disassociated from what is going on around me, extreme shortness of breath, my heart beats really fast, and I feel like Iím going to pass out. Itís the scariest thing.

I honestly donít know what is causing these episodes. Yesterday I was getting ready to go to a dinner and was getting my hair done when all of a sudden one of the episodes hit. Oddly enough, the hair spray that she was using seemed like it wasaggravating my symptoms. I have no idea if certain chemicals or sprays can make you feel like that, but I just noticed that I had to cover my mouth and nose when she was spraying my hair, or else it made my shortness of breath worse.

Since I had the test for Lyme, my doctor pretty much ruled that out, but Iíve been hearing from people suggesting that it may still be a possibility. My doctor did, at first, think that it was Lyme, but after the ELISA test was negative, she said it was probably Fibromyalgia.

If youíve read all this, thank you so much. Thank you in advance for your help and opinions.

 
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Old 03-12-2007, 03:42 AM   #2
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Join Date: Dec 2006
Location: nh
Posts: 233
ryebeach HB User
Re: Could this be Lyme - Please help!

Quote:
Originally Posted by *Robin* View Post
Hi, Iíve never posted on the Lyme forum before, but I am hoping that someone can help me figure out what has been causing me 4 months of weird, out of the blue symptoms.

Iíll try to make this as short as possible. Iím 24, and have had no major health issues with the exception of kidney stones prior to the onset of these symptoms.

On Thanksgiving Day, I started getting pain in my left shoulder and on the left side of my chest. The next day the pain continued and I also had shortness of breath, so I went to the ER where they did an EKG, a Chest X Ray and Blood Tests. All the tests were normal, and I was told it was probably Costochondritis.

The chest pain continued, and I saw a Cardiologist a few days later. He sent me for a CT Pulmonary Angiography (with contrast), and a Doppler Test on my legs to test for a blood clot, since I had been using birth control pills the month before. Both tests were normal. He also did an Echocardiogram, which he said was normal.

Since then, I have seen many doctors, including another Cardiologist, who has done an EKG, another Echocadiogram and a 24 Holter Monitor. He thinks I have Mitral Valve Prolapse (even though my Echos have never shown it). Basically, I donít want to be diagnosed with something that I may not have.

Since Thanksgiving, I have had pain in the following areas. They are not all the time, and they can last anywhere from hours to weeks

Pain in Chest, Sternum, Ribs, Arms (shooting pain), Knees, Shoulder blades, Neck and Back, Hips and between wrists and elbows. I have Shortness of Breath, Dizziness, Heart Palpitations and "skipped beats", Tingling in Hands and Feet, Burning sensations, Tenderness under arms on both sides, Pulsing sensations, Stomach Pain, Headaches (different pattern than my usual headaches that Iíve had in the past), and Vibrating sensations.



I have had the following tests

EKG
2 Echocardiograms
Stress Test
24 Hour Holter Monitor
MRI of Brain (no contrast)
MRI of Cervical Spine (no contrast)
MRI of Thoracic Spine (no contrast)
CT Scan of Stomach (swallowed contrast)
EMG
EEG
Tests for Lupus and Lyme Disease

Another thing is recently I have been having these "episodes" where I feel really disassociated from what is going on around me, extreme shortness of breath, my heart beats really fast, and I feel like Iím going to pass out. Itís the scariest thing.

I honestly donít know what is causing these episodes. Yesterday I was getting ready to go to a dinner and was getting my hair done when all of a sudden one of the episodes hit. Oddly enough, the hair spray that she was using seemed like it wasaggravating my symptoms. I have no idea if certain chemicals or sprays can make you feel like that, but I just noticed that I had to cover my mouth and nose when she was spraying my hair, or else it made my shortness of breath worse.

Since I had the test for Lyme, my doctor pretty much ruled that out, but Iíve been hearing from people suggesting that it may still be a possibility. My doctor did, at first, think that it was Lyme, but after the ELISA test was negative, she said it was probably Fibromyalgia.

If youíve read all this, thank you so much. Thank you in advance for your help and opinions.
Hi Robin
Here is some symptons you could look at and talk to the doctor about the the western blot test through Igenexs There is not really a completely reliable test for lyme but there are different tests to give the doctors markers to work with I have found I have a sensivity to paiint and differnt hair sprays and perfumes takes my breathe away too
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

Are you being treated by a Lyme knowledgeable doctor? This is very important. 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 such as IgeneX in Palo Alto, CA. Have you been tested for all of these?

It is also important to learn as much as possible. here is some helpful info books
"Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Joseph Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country,
good luck and check back on the bords the above was sent by ticker to me since you were new to the board and like me it has alot of info so I pasted it for you hope you don't mind ticker
ryebeach

 
Old 03-12-2007, 11:00 AM   #3
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Location: Raleigh, NC
Posts: 80
KateTheRiot HB User
Re: Could this be Lyme - Please help!

Also, fibromyalgia is often a result/symptom of Lyme.

 
Old 03-12-2007, 12:34 PM   #4
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Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Could this be Lyme - Please help!

Thanks ryebeach!

Welcome to the board Robin! If you need a doctor recommendation, let us know.

 
Old 03-19-2007, 03:14 AM   #5
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Join Date: Dec 2006
Location: nh
Posts: 233
ryebeach HB User
Re: Could this be Lyme - Please help!

hi ticker
I really have been helped by this board and the many posts I return to work 3 days a week tommorow wish me luck
thanks ryebeach

 
Old 03-19-2007, 06:21 AM   #6
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Re: Could this be Lyme - Please help!

Good luck ryebeach! I am glad you are feeling better!

 
Old 03-20-2007, 02:59 AM   #7
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Join Date: Dec 2006
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ryebeach HB User
Re: Could this be Lyme - Please help!

Quote:
Originally Posted by ticker View Post
Good luck ryebeach! I am glad you are feeling better!
Thanks Ticker
I feel like a little kid on their first day of school Thanks for the reply Hope you are doing good as well I will let everyone know how it goes
Ryebeach

 
Old 03-20-2007, 05:57 AM   #8
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Could this be Lyme - Please help!

Ryebeach, it is exciting to begin returning to a normal life! Do keep us posted on how you are doing, okay?

 
Old 03-21-2007, 03:30 AM   #9
Senior Member
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Join Date: Dec 2006
Location: nh
Posts: 233
ryebeach HB User
Re: Could this be Lyme - Please help!

Quote:
Originally Posted by ticker View Post
Ryebeach, it is exciting to begin returning to a normal life! Do keep us posted on how you are doing, okay?
hi ticker
Everything went pretty good at work yesterday Thanks for the reply
ryebeach

 
Old 03-21-2007, 02:26 PM   #10
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Re: Could this be Lyme - Please help!

I am glad to hear it ryebeach! Keep doing well!

 
Old 03-27-2007, 03:53 PM   #11
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Sara1996 HB User
Unhappy Re: Could this be Lyme - Please help!



Hi Robin,
I have been experiencing the same symptoms and basically had all the same tests done. Do you have any answers yet. This is ruining my life!!!!! I have been going through this too long and no answers!! So frustrating!!! I have almost given up on doctors!!! Hope you have some answers.

 
Old 03-27-2007, 04:32 PM   #12
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Join Date: Mar 2007
Location: USA
Posts: 493
sarah92202 HB User
Re: Could this be Lyme - Please help!

Sara and Robin, I have also had all the same tests EEG, EKGs ultra sounds of aorta, done by cardiologist in Aug of last year, even veneous doppler on legs looking for clots. Was told same thing Costracondritis (sp?). and sent to a Rheumatologist, who had me tested for illegal drugs after I asked him to test for LD. I had an equivocal Elisa 8 years ago so my doc's dismissed LD and I have been told for past 8 years that I would eventually come up positive for Luus, although my Lupus tests are still negative. But I found a new doc.in Oct and convinced him to sign the Igenex form for me, which I had gotten directly from Igenex and took to the appt. with me. He agreed, and 3 weeks later I had a diagnoses of LD finally, and started seeing an LLMD. I have the strange disconnected feeling to, I feel like I'm floating out of my body, and can't focus when I am standing and talking to people, I get really hot, and start to black out. Have you noticed if your feet turn blue? I also have all the shooting and tingling pains especially in my left arm, and I get this hot shooting pain in my chest that feels like it is on fire. I have extreme trouble with breathlessness and fatigue too. Get tested by Igenex, and have a LLMD read the bands, because even the doc that signed the Igenex form for me didn't know how to interpret the results, so even if they tell you it's negative, get it read by LLMD before dismissing LD. I'm sorry that you are going out of your mind, but hang in there and don't give up, and don't let doc's push you around, they don't have to live in your shoes, you do! I let doc's do this to me for years, and unfortunately by doing this I didn't know that my son also had LD and I feel guilty that I didn't trust my gut and keep insisting to be tested again, until we were both chronic. Good luck, Sarah

 
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