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Old 06-27-2007, 02:12 PM   #1
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New here, possible lyme and a question for Lymer

Hello everybody,

I'm living in the Toronto area and am going crazy with my current state of health. Before the summer of 2004 I was quite active. I lifted weights and did capoeira. I was in Germany working that summer and was rock climbing quite a bit in the wilderness so there maybe is a possibility of being bitten there. The area of Germany where I was is notorius for ticks and my friends dog got bitten twice that summer. One say I started getting spasms in my back and legs, tingly feelings, WEAKNESS (especially floppy arms) and fatigue. My sleeping got lighter and my ability to concentrate became worse. It is now 3 years later and I have tried pretty much everything. I've been tested for MS, had MRI's and the works. My symptoms are worse now and I don't know what to do. The doctors look at me and seeing that I look fit they just say "you have a bad back/muscle imbalance/gotta stretch it out." I've been doing LIGHT yoga for some time now and have tried every "light " sport under the sun. I think if it was just a "bad back" (MRI did not reveal any joint damage, disc herniations) it would have healed up a bit by now because I was playing by the rules. The brain fog/fatigue is also killing me. I feel like I have to concentrate so hard to talk to somebody. It is quite bad now and I'm living with my dad because just can't work because of back/knee/neck joint pain/muscle twitching and fatigue. In Gernmany I did get a blood test for lyme right when the symptoms started but it revealed nothing (these are supposedly not so accurate I've read?) so any MD i've seen in canada just immediately dismisses the possibility of Lyme.

Lymer I hope you can help me. I'm in the GTA. I need a doctor who can help determine if lyme is a possibility by using more reliable techniques. Who exactly was your doctor? Any help would be appreciated. I apologize for the long venting post but I am getting so depressed and down on myself. I'm 25 and was high on life 3 years ago. Since then my career prospects have dwindled and I don't go out often other than to do yoga at the gym. Thanks for listening.

misher

 
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Old 06-27-2007, 02:57 PM   #2
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Re: New here, possible lyme and a question for Lymer

Hi misher, welcome to the board!

I am sorry you are feeeling so bad. I know it is frustrating to be unable to do the things you enjoy.

Your symptoms do sound like they could be Lyme related to me. 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 knowledge- able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. 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.

There definitely is Lyme disease in both Germany and Canada. The only Lyme doctor I know of in Canada is Dr. Ernie Murakami in New Hope, BC. Maybe this could be a starting point for you. I believe there is a Canadian Lyme Disease Foundation. They may be able to help.

It is also important to learn as much as possible. Lyme disease can cause cognitive and neuro problems. To see some of these symptoms, read Lyme Disease Research Studies Overview of Neuropsychiatric Lyme Disease.

I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay? Good help is available, and you are not alone.

 
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Amariah (04-24-2012), jocyn (10-27-2012)
Old 06-27-2007, 03:27 PM   #3
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Re: New here, possible lyme and a question for Lymer

Hi Mischer,

I am seeing Dr. Murakami and I highly recommend him.

Tracy

 
Old 06-27-2007, 03:55 PM   #4
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Re: New here, possible lyme and a question for Lymer

Thanks Tracy and trickster. Unfotunetely, I am not in BC but I will consider going out there to see Dr. Murakami. I am willing to get the blood work to be sent to Igenex in California and pay for it. I was wondering if anyone on here has sent their bloodowork all the way to california from the other side of the continent?

 
Old 06-27-2007, 04:06 PM   #5
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Re: New here, possible lyme and a question for Lymer

Hi misher. I think IgeneX tests blood from all over including Canada and Europe.

 
Old 06-27-2007, 08:53 PM   #6
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Re: New here, possible lyme and a question for Lymer

Hi misher.

Ticker and Tracy have said it all.

I just wanted to say Hi

And to tell you that many of us have been exactly where you are. Very sick with no diagnosis; going from doctor to doctor and having many tests with no definitive results. Talk about frustrating!

I finally saw an LLMD (Lyme Literate Medical Doctor) who immediately began to treat me based on my symptoms alone. I later tested positive for Lyme via Western Blot done at Igenex labs.

Seeing a doctor who is literate and knowledgable about Lyme and it's effective treatment.

Hang in there. I've had despair and hopelessness.

I do feel much much better than I did last year. Hang in there.

Peace and health to you,
Mickie

 
Old 06-28-2007, 03:54 AM   #7
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Re: New here, possible lyme and a question for Lymer

Thanks mickey,

I am really glad I found this forum. I'm looking in to doing the blood tests at IGenex right away. Even if it isn't lyme, at least it is something I can cross off the list.

Thanks for the support.

Misher

 
Old 06-28-2007, 11:51 AM   #8
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Re: New here, possible lyme and a question for Lymer

Misher,

The good thing about Dr. Murakami is he also diagnosis clinically. I am a Canadian living overseas in Asia and had been to many doctors over 7 months. They searched for everything from MS to ALS and everything came back normal. They all just threw up there hands and said it was in my head. My GP in Singapore (who is Canadian also) was quite upset with their lack of trying to help me, he was quite willing to test me for lyme disease. Was tested in Singapore but the results came back negative. My GP was willing to let me try a course of Doxy just to see. I herxed on the doxy, and for me that was the proof in the pudding. I was on a plane 2 weeks later to see Dr. Murakami so I could kick this bug in the butt.


So in saying this, don't just trust the test results. Some people need to be diagnosis clinically like myself.

Thanks to Dr. Murakami and a month Biaxian and Flagyl, I can say I'm almost 70% better. Two months ago I had to go back to bed after sending the kids to school, last week I painted my mothers fence, I can mow the lawn, chase the kids around. I know I'm not completely better, as after an activitiy I hurt, but atleast I'm getting my energy back and the hurt is a good hurt as I know it is because I am actually able to do something now. This gives me hope.

Tracy
Tracy

 
Old 06-28-2007, 02:09 PM   #9
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Re: New here, possible lyme and a question for Lymer

Wow, Trace that is great news. I just ordered the iGENEX tests so we'll see what happens with those. I'm quite sure that they will come back NEGATIVE like every other test out there that I had done. The problem is finding an MD who will actually et me try any of the medications to see. I have an appointment with my family doctor next week and I he doesn't seem like the type to do that. I'll have to keep my fingers crossed. I am not going to rest until I have Lyme disease scratched off the list no matter how hard it is. Trace, when you "herx" that is a sign that the antibiotics did its job right? Therefore if you didn't have any lyme diseas or coinfections the drugs wouldn't have resulted in a herx? Thanks for replying. I hope you have a good recovery.

misher

 
Old 06-28-2007, 04:28 PM   #10
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Re: New here, possible lyme and a question for Lymer

Misher,

My understanding of a herx, is they are worsening of existing symptoms or the appearance of new ones, caused by the die off toxins of the bacteria. When I was on the doxy, about 5 days after taking the antibiotics, every lymph node in by body was swollen and sore, felt like I had the flu, nausea and vomitting for about 1.5 weeks to 2 weeks. After the month of doxy, I was but on Biaxin and Flagyl and I herexed within 3 days of taking that combo. I got severe rib pain, swollen lymph nodes, a rash on my torso that last about 2 weeks also. Once the herxing was done I always so an improvement in my orginial symptoms. So even without a "positive" test result I think I am on the right track.
Thanks for you kind words, an am recovering, its all one step at a time. I hope you find your answer soon. It is frustrating not to know what is wrong with you.

Tracy

 
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