Lyme disease

[fisher]

Here is a link to a Doctor who works out of St Catharines who you may want to contact...

 

http://expertpages.com/details.php/4424_4538_301_121.htm

 

And here is an interesting article (4 years old) that details an Ontario woman who had a Lyme test done in Ontario that was negative but then was confirmed via US tests for Lyme disease (that Canadian doctors do not do).

 

http://www.anapsid.org/Lyme/tickingbombcanadalyme.html

 

Here is an excerpt from that article "My own doctor, infectious-disease specialist Hovsep Baghdadlian, says that of the 125 people he is currently treating for Lyme disease, only 10 per cent tested positive on Ontario tests. Like me, many doctors treating Lyme disease have turned to specialized labs in the U.S. But some Canadian doctors are loath to recognize foreign tests."

 

 

And here is another story done this year by CTV...and another excerpt.

 

http://www.ctv.ca/servlet/ArticleNews/stor...0608?hub=Health

 

Within a couple of months, he became weak, plagued with headaches and eventually had to stop working. He went to 18 doctors, internists and neurologists and all of them missed the diagnosis, with some telling him his illness was all in his head.

 

Even though he had tests for everything -- including a test for Lyme disease -- all of it came back negative.

 

"It was a difficult time, not understanding why I was getting sick. My doctor thought it was a sinus infection but it continued to get worse," he says.

 

It took a year and a half and a specialized test to confirm he had Lyme disease. To treat the illness, Manten gives himself infusions of antibiotics twice a day. Four years later, he says he feels better, but is not free of the illness; he still has intense fatigue and has not returned to his job as an engineer.

 

Family doctor Dr. Ben Boucher, who has treated many patients with Lyme disease at his practice in Port Hawkesbury, N.S., says Manten's is a common story.

 

"There are a considerable number of patients being undiagnosed or misdiagnosed, and therefore not treated," he says.

 

"It's a concern because these patients get more ill as time goes on," says Boucher, noting that patients can develop facial palsy, cardiac issues and progress to nerve damage and inflammation of the brain and spinal cord.

 

"It is quite treatable and easily treatable [with antibiotics], but as it goes on into phase 2 and 3, it becomes more difficult to treat."

 

Part of the problem is that the standard blood test for Lyme disease is notoriously unreliable. It fails to detect the infection 20 per cent of the time.

Edited November 23, 2009 by fisher

[Spiel]

Hi Tambo

 

I do indeed know two people who have Lyme disease.

They both had numerous misdiagnosis until they got into see a Dr. who specializes in Lyme disease. He had their blood samples sent to California for testing as apparently the screening process here is often less than adequate. The cost if I remember correctly was $600.00 and not covered by OHIP. But with the correct diagnosis they are now getting the treatment they need.

 

I certainly hope you get to the root of your troubles quickly and get the treatment you need.

[tambo]

thanks ph

the internet is a double edged sword. reading up on diseases can scare the crap out of you, but it can also open some doors, as it did for me with lyme. otherwise, i would have accepted the ALS fate

 

mike

 

I hope that you are not diagnosed with ALS, lyme disease or anything milder would be better. I wish you the best.

 

But does anyone else also hate reading symptoms for almost any disease? After reading the links I am almost convinced I have lyme disease And every time I see that heart and stroke commercial on TV I feel I'm in the middle of having a stroke!

[tambo]

thanks jer

i am losing faith with neuros, particularly the beside manner

 

you;ve got a good attitude

mike

 

I've had similiar symptoms (trouble walking, weak hands, poor balance) that have been steadily worsening for the last few years.

 

After being referred to a neurologist, I was diagnosed with a form of muscular dystrophy called Charcot Marie Toothe disease. Very similiar symptoms to MS, but not near as severe or progressive. ALS was never a consideration, but so many disorders exhibit similiar symptoms, doctors barely know where to start. The rapid onset of your symptoms seems to indicate an infection rather than genetic (but I'm certainly not an MD). I've suffered from related symptoms most of my life, but only really started feeling severe effects in my late 30s.

 

I hope you get an accurate diagnosis soon and appropriate treatment. So far, the only treatment available for my condition has been preventative, various braces and ankle supports (basically just to keep me from breaking my neck).

 

Whatever the outcome, all you can do is soldier on...

[tambo]

good infor fisher

i've heard a lot of similar stories, and i will contact that doc

thanks

mike

 

Here is a link to a Doctor who works out of St Catharines who you may want to contact...

 

http://expertpages.com/details.php/4424_4538_301_121.htm

 

And here is an interesting article (4 years old) that details an Ontario woman who had a Lyme test done in Ontario that was negative but then was confirmed via US tests for Lyme disease (that Canadian doctors do not do).

 

http://www.anapsid.org/Lyme/tickingbombcanadalyme.html

 

Here is an excerpt from that article "My own doctor, infectious-disease specialist Hovsep Baghdadlian, says that of the 125 people he is currently treating for Lyme disease, only 10 per cent tested positive on Ontario tests. Like me, many doctors treating Lyme disease have turned to specialized labs in the U.S. But some Canadian doctors are loath to recognize foreign tests."

 

 

And here is another story done this year by CTV...and another excerpt.

 

http://www.ctv.ca/servlet/ArticleNews/stor...0608?hub=Health

 

Within a couple of months, he became weak, plagued with headaches and eventually had to stop working. He went to 18 doctors, internists and neurologists and all of them missed the diagnosis, with some telling him his illness was all in his head.

 

Even though he had tests for everything -- including a test for Lyme disease -- all of it came back negative.

 

"It was a difficult time, not understanding why I was getting sick. My doctor thought it was a sinus infection but it continued to get worse," he says.

 

It took a year and a half and a specialized test to confirm he had Lyme disease. To treat the illness, Manten gives himself infusions of antibiotics twice a day. Four years later, he says he feels better, but is not free of the illness; he still has intense fatigue and has not returned to his job as an engineer.

 

Family doctor Dr. Ben Boucher, who has treated many patients with Lyme disease at his practice in Port Hawkesbury, N.S., says Manten's is a common story.

 

"There are a considerable number of patients being undiagnosed or misdiagnosed, and therefore not treated," he says.

 

"It's a concern because these patients get more ill as time goes on," says Boucher, noting that patients can develop facial palsy, cardiac issues and progress to nerve damage and inflammation of the brain and spinal cord.

 

"It is quite treatable and easily treatable [with antibiotics], but as it goes on into phase 2 and 3, it becomes more difficult to treat."

 

Part of the problem is that the standard blood test for Lyme disease is notoriously unreliable. It fails to detect the infection 20 per cent of the time.

[tambo]

thanks spiel

i met you on the notty a couple years ago

 

my dad still fishes it, and has been doing good in that same stretch, right around the area in your avatar, very high and cle\ar water this year

i was there with him last year when he caught a laker

 

 

 

well i'm off for more tests today and tomorrow, i'll let you all know the outcome on wednesday

 

thanks for all the kind wishes and info

 

mike

Hi Tambo

 

I do indeed know two people who have Lyme disease.

They both had numerous misdiagnosis until they got into see a Dr. who specializes in Lyme disease. He had their blood samples sent to California for testing as apparently the screening process here is often less than adequate. The cost if I remember correctly was $600.00 and not covered by OHIP. But with the correct diagnosis they are now getting the treatment they need.

 

I certainly hope you get to the root of your troubles quickly and get the treatment you need.

[BrownTown]

Good luck with the test Tambo!!!

I wish the best for you!

[Spiel]

thanks spiel

i met you on the notty a couple years ago

 

I remember it well Mike. It was one of the last (maybe the last) times I fished the Notty.

Get well and hopefully we'll meet there again next fall.

[ehg]

mark

forgot to answer one of your q's

 

my experiences -

 

in march, i started having a terrible pain on the top of my foot, hurt incredibly

developed an obvios as it hurt a lot

 

around the same time i started losing my balance, can'[t remember if it was because of the foot, bot happend around the same time

 

had the foot checked out, couldnt find anything

 

in july, terrible ankle sprain

 

i had been lymping sinch march/april, obviously limping worse because of the sprain

 

i['ve noticed for the last couple months that my knees lock when i straighten my legs, caused a gait change, they lock everytime i straighten them when i walk

 

foot and ankle are really stiff still

 

around august, weakness and hand and muscle twitching

also developed the increased startle weakness

developed slightly slurred speech,which comes and goes

 

i try to go to the gym a couplel times per week, i do the stair climber and treadmill, walking improves after this, but comes and goes

 

i try to do light resistance training too

 

 

Had the same symptoms back in March of 2001. Went to doctors many, many times and they came to no conclusions.

Finally i had a brain MRI and went to see a neurologist who said with great indifference "Maybe you have Multiple Sclerosis, i don't know". Turns out i did have MS presenting itself. Not that anyone reached this conclusion until i saw an opthamologist years later who said this was the case.

Now it has created disability.

Hopefully you don't have ALS but be persistent in getting a diagnosis, unfortunately few will care but you.

[splashhopper]

Had the same symptoms back in March of 2001. Went to doctors many, many times and they came to no conclusions.

Finally i had a brain MRI and went to see a neurologist who said with great indifference "Maybe you have Multiple Sclerosis, i don't know". Turns out i did have MS presenting itself. Not that anyone reached this conclusion until i saw an opthamologist years later who said this was the case.

Now it has created disability.

Hopefully you don't have ALS but be persistent in getting a diagnosis, unfortunately few will care but you.

 

 

Heh EHG..... not sure if you saw the article about MS on CTV and the major networks across North America

 

It provides some hope

http://www.theglobeandmail.com/news/nation...article1372414/

 

 

As for "few caring"..... my mother -in-law had Lou Gehrigs disease before she passed away and we were the Primary caregivers for her.

 

Many in the medical system DO care.... very few don't .... it's all in ones own outlook upon life and the cards they are dealt with as to how we will be treated.

 

Grandma got involved with a study at UWO under Dr Strong's care ... that team is very caring... considering that they KNOW where that disease takes most of their patients...

 

They were very interested in Grandma participating in the study because she happened to have lived in the two places with the highest incidence of ALS per capita worldwide. ( the island of Guam and the city of Woodstock, Ontario)

a) She was in a prison camp on the Island of Guam as a young girl for almost 2 years..

She lived here in London for 5 years.

 

 

Grandma was an inspiration to all in our family and to the health team.... she came from a very poor family in the Phillipines and rarely complained about what "she didn't have".

 

She had a tough time at the start of the process accepting her fate( anybody would), but once she did she showed what she was made of and who she truly was. A leader to her family and friends.

An inspiration of courage and gratefulness to all the medical teams involved in her care.. in the hospital and at home..

 

She showed her family how to prepare for the inevitable.... she made her amends to people, face to face, before she lost her voice.

 

 

I was very hesitant to participate in this thread as I don't want to crush anyone's hopes of not having the brutal disease of ALS..

 

BUT, I couldn't stay quiet once you mentioned " few care".... ( medically or in general)

This forum is showing its true family values and the sense of personal community that we have for one another for one.

 

I don;t pretend to know what is like to be in your shoes.... but I sure know what it was like on the days that grandma had a pity party shortly after she was diagnosed.

 

Dr Strong gave us "permission to take care of the caregivers too"

 

If I can be of service to you during this period of your life, please do not hesitate to contact me in a PM....

I will do what I can.

 

Sincerely and God Bless

 

Splashhopper

Edited November 24, 2009 by splashhopper

[Twocoda]

To be honest ...ive probably got 50 hits on this thread alone ...always checkin for some good news...even though i havent the abilities or a magic wand to flash around to make everything "right" ...if i did i would most defiantly apply it to your situation....

 

Try and stay positive Tambo...and for the times you cant ....Ill do it for ya ..

 

All the best

[tambo]

thanks for all the support fellas

i just got back to barrie today, finally mustered up the energy to come home

 

yesterday was by far the worst day, had a lumbar puncture aka spinal tap

not fun at all

 

thanks again for all the kind words, especially considering i'm not a regular contributor

 

mike

[tambo]

slight set back today, first round of blood work came back negative, but apparently that happens a lot

 

i was hoping this wasnt going to be the case

 

got to stay positive

 

tambo

[ehg]

slight set back today, first round of blood work came back negative, but apparently that happens a lot

 

i was hoping this wasnt going to be the case

 

got to stay positive

 

tambo

 

If the problem is persistent eventually there will be a diagnosis. Try your best to live your regular life.

[Spiel]

Hey Mike

 

I spoke with my friend yesterday who has been diagnosed with Lyme disease and asked him if

he'd be willing to talk to you directly about it, he said he'd be happy too. Might be worth talking to someone with first hand experience in the matter. If you'd like his phone number shoot me a PM.

 

As a cautionary measure I ought to warn you, he'll talk your ear off.

[tambo]

ehg.......thanks for the advice

 

spiel.......pm sent, looking forward to speaking with him