Lyme disease

[tambo]

hello ofners

i am wondering if anyone has had experience with lyme disease. over the last few months, i have been experiencing debilitating health issues. It's hard for me to talk about this, but i've been given a 'probable ALS' diagnosis. for those that don't know that is lou gehrig's disease, and is fatal. this has been crushing for me. i just turned 30, and up until april, i was very active.

 

i'm an avid hunter and fisherman, and spent every weekend last year hunting and fishing. this year, i can hardly walk and am losing function of my hands.

 

 

i am wondering if anyone here has known anyone with lyme. from my research, lyme ultimately impairs the nervous system, and has known to mimic ALS, MS, parkinsons, etc. the problem i have found is many doctors don[t know much about it. my neuro was indifferent when i asked him about it. i went for a blood test for lyme last week, and have the follow up tomorrow.

my undeerstanding is that it[s difficult to detect in the standard blood test.

 

if anyone has any guidance, please let me know

thanks

tambo

[Joey]

I researched this before. Did you have a bullseye shaped mark anywhere on your body recently? The tick that gives you the lyme disease leaves a bullseye shaped mark on your body where it bites/burrows in to you. Usually that is the tell-tale sign.

 

Joey

Edited November 22, 2009 by Joey

[Flyboy]

Check out this CTV W5 piece on Lyme Disease last week. Canadian doctors are not expecting this disease here so they are ruling it out as a possible cause . . .

 

http://www.ctv.ca/servlet/ArticleNews/stor...91114?s_name=W5

[tambo]

hey joey

i don[t remember the rash, but it could have been on my head or back.. also, through my research i found that less than 50% of those infected remembered the rash.

[tambo]

hey flyboy,

i've watched the vid. from my research it seems that lyme is very common, but it's hard to find docs that really understand it.

[Flyboy]

Lets hope your blood test results give you a definitive answer tomorrow . . . Was the test requested by your MD or on your own?

[azebra]

I wish you all the best, strength,hope,ambition happiness,and a bit of ole luck! my heart goes out for you, your post touched me in a way I cant explain in words. but My thoughts and prayers are with you. lets hope all goes well for you! best wished! Jordan

[tambo]

thanks for the kind words

 

flyboy, i had to request it, and his response was 'if you want'

 

last year at this time i bench pressed 405 pounds, and deadlifted 495, today, i could barely do up my zipper and can barely turn the key in the ignition

 

i hope it's not what the doc thinks

[timmeh]

You should absolutely go to see a lyme specialist. Ask your doctor for a referral. Someone who I work with went through a very similar thing. They're just returning to work and I don't know this person well but based on what others have to told me it was a problem getting a correct diagnosis, as they thought it was something else.

 

And fyi you are correct a rash is not always present and the standard blood tests can return false negatives. It can be tough to accurately diagnose. Demand that your doc sends you to see someone. If he seems unwilling to believe you, search the Canadian lyme disease website. I believe they have some specialists listed. You should probably check this site out anyway.

 

http://www.canlyme.com/

Edited November 22, 2009 by timmeh

[tambo]

thanks timmeh

believe me, ive exhausted all the websites. i've even had my gal talk to a veterinarian friend and she says it's very tough to find even in animals. if you can, ask that work person where he or she went, because my research has shown there are few lyme literate docs around. i find it hard to believe i'm dying, but that possibility is driving me nuts

[Guest gbfisher]

I was bitten by a tick while hunitng. I did get a bullseye mark around the bite. I had tests to see if I indeed did get it. I was told to wait in order to see as tests can come back Neg. or Pos. .. in early stages.

It's extremely hard to diagnose...It takes many tests to find out and can mimic hundreds of different diseases. Its a hard one for sure from what I understand.

Keep on them to find out if you think that is what you have. No one will look if you do not ask and be forward about it. Good luck.

[tambo]

thanks gb

like i said, i had to ask for the test, and i have the second test tomorrow

i expect it will come back negative, but it won't stop me

if i have it, it has progressed to the neuro level

 

did you just have the regular blood test for it?

thanks

[Guest gbfisher]

Yes. Just a regular test was done.

[bigfish1965]

If, at this point, you feel like there is a chance, have your doctor start you on the antibiotics. It is six weeks of antibiotics...really, what do you have to lose?

[irishfield]

Keep demanding and seaching fella!

 

I'm sure you've googled it to no end... but here's a link to testing/etc.

 

http://www.mefmaction.net/Patients/Symptom...64/Default.aspx

[misfish]

I have been trying to find the write up, that was in a OOD mag.Cant find it.Some serious issues were brought up.Like Canadian doctors, not really understanding.Treating symtums like flues.

 

Hope all works out.I,ll keep trying to find it.

 

Like Wayne said,keep demanding answers.

[tambo]

thanks rick, irish, mis

i have googled it to death

one thing i've found out recently was one of my symptoms led me to the possibility o0f lyme

 

over the summer i noticed an increased startle reflex, sudden noise makes me jump, not even loud noise,

 

i tried partridge hunting this year, but i couldnt handle it,

whena partridge flushed, or i heard gunshots, i would startle so much i would fall to the ground

 

i did manage to get one despite this

 

another time my neighbour took me for a drive and i was having a dip - Skoal

 

he sneezed and i spilt my spit cup all over me and his truck seat

 

this is a lyme symptom, not so much for als

[musky_man]

Tambo,

 

 

I work for the communicable disease division of Toronto Public Health and deal with a few cases of Lyme disease every year.

 

First I have a few questions:

 

1) Have you been genetically tested for ALS? That will rule in/out that potential diagnosis quickly.

 

2) What exactly have you been experiencing?

 

3) Do you recall a "bulls-eye" rash in your past. Important to know however that not all people have this rash.

 

 

TESTING

 

Your doctor might run two tests for lyme disease. One is called and ELISA the other is called a Western Blot. The Western Blot is a more senstive version of the ELISA. These tests look for antibodies to the bacteria that case the infection. There are 2 classes of antibodies they look for: 1gG and IgM. If you have IgG antibodies and no IgM, then it suggests you have been infected, but in the past. If you have IgM and no IgG, is suggests a more current infection. Past infeciotn would/can cause very bizarre neurological symptoms.

 

If it is Lyme disease, then it is treatable with long courses of antibiotics, but the earlier the better.

 

The other thing you might consider, although it is a long shot, is West Nile virus -- it can cause all sorts of weird neurological manifestations. Again - easily tested via a blood test where they look for IgG and IgM antibodies to WNV.

 

Hope that is some help and good luck.

 

Mark

[musky_man]

Fkyboy,

 

The Ontario Ministry of Health and LongTerm Care have been looking at Lyme disease much more closely over the last 3 years and they are tracking and mapping areas all throughout Ontario. Also - doctors are being made more aware as well.

 

Mark

 

 

 

 

Check out this CTV W5 piece on Lyme Disease last week. Canadian doctors are not expecting this disease here so they are ruling it out as a possible cause . . .

 

http://www.ctv.ca/servlet/ArticleNews/stor...91114?s_name=W5

[tambo]

Tambo,

 

 

I work for the communicable disease division of Toronto Public Health and deal with a few cases of Lyme disease every year.

 

First I have a few questions:

 

1) Have you been genetically tested for ALS? That will rule in/out that potential diagnosis quickly.

 

2) What exactly have you been experiencing?

 

3) Do you recall a "bulls-eye" rash in your past. Important to know however that not all people have this rash.

 

 

TESTING

 

Your doctor might run two tests for lyme disease. One is called and ELISA the other is called a Western Blot. The Western Blot is a more senstive version of the ELISA. These tests look for antibodies to the bacteria that case the infection. There are 2 classes of antibodies they look for: 1gG and IgM. If you have IgG antibodies and no IgM, then it suggests you have been infected, but in the past. If you have IgM and no IgG, is suggests a more current infection. Past infeciotn would/can cause very bizarre neurological symptoms.

 

If it is Lyme disease, then it is treatable with long courses of antibiotics, but the earlier the better.

 

The other thing you might consider, although it is a long shot, is West Nile virus -- it can cause all sorts of weird neurological manifestations. Again - easily tested via a blood test where they look for IgG and IgM antibodies to WNV.

 

Hope that is some help and good luck.

 

Mark

 

 

thanks a lot mark

 

i have not been genetically tested for als

 

i had to request the lyme test, and i went on nov 11, with the followup tomorrow

i'm assuming the blood work is testing for the said antibodies?

 

even if i had the rash, i wouldn't have made the connection between that and lymes

 

btw, i hunt turkey in st thomas/aylmer area, which has a high pop of ticks

[tambo]

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

[Guest gbfisher]

Im sure you read this but

 

 

 

http://www.canlyme.com/patsymptoms.html

[tambo]

thanks gb

i did read that the first day i came across lyme, two weeks ago

the doc didn't consider lyme until i mentioned it, and his response was basically 'if it will make you feel better, get the blood test'

 

thanks again for the help

[pikehunter]

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!

[Jer]

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...