I just need to vent my frustrations. Just got a postive WB the other day. The comment written below it said that it seems like the infection isn't very active, but the clinical picture (?) should be taken into account.
My doc just might light of the result and said I will have to see a neurologist. And my MRI showed signs that could come from borreliosis too!
I felt so relieved that my WB was positive and so frustrated that my Doc made light of it AND the MRI- results, that I just sat there weeping. He sort of rolled his eyes when I informed him that I had sent my blood to be microscopied.
It was too much, so I went and saw another doc just 2 hours afterwards. She seemed to take it serious. At least she listened to me, and would try and find out what abx I ought to have.
I am so tired of not being taken seriously. I had to quit school and can barely keep my job which is only 7 hours a week. And that combined with a pos WB shouldn't be enough to get treated!?
Hopefully my new doc will actually do something.
Posts: 155 | From Norway | Registered: Jan 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I know what you mean siggy.
It's very rare to find a MD in mainstream that will even know anything about this disease.
Too bad their are'nt any LLMD's in Norway that I know of...
Is there a support group you can lean on?
Take this new doctor Dr. B's guidelines on treatment...
Maybe she'll follow his good advice.
In the mean time...hang in there as best you can.
We're all here for you....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
my son has lyme and his spinal did not show it and it was hell! He had a spinal headache from it on top of the lyme headache. Be prepared and good luck!
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Hi Siggy, If you go to the colorful menu on your left, you can hit "Support Groups" and then Europe and you will find some listed.
One of them seems to be Swedish, no Norwegian that I can tell. But the Euro people know a lot and might be able to help you locate a knowledgeable doctor.
I would refuse a spinal tap as they are not a better test than a Western Blot. And you could have some terrific headaches afterward.
I would ask what part of the Western Blot says the infection is active or inactive????
Hope you can find a good doc. Let us know. Ann - OH
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I agree with Ann...the spinal is negative for lyme in most cases...it does'nt like to hang out in spinal fluid....tell your doc NO.
The Igg will tell a duck that "you have been exposed to lyme sometime in your life but it isn't active"
The Igm will tell the duck it's active when positive...and from a different lab I got both negative...same time period for blood draw...
Also make sure you get copies of your blood test results...very important when you start hopping from one duck to another...
However I got a pos Igg and neg Igm when first tested...later after six months of oral doxy and ammox....I got pos Igm...
Sooooo go figure.....these test only confirm clinical diagnosis....
Like I said take the dr B guidlines to this duck and or any info you may garnish from this site...
Ask her to call me and I'll give her an earfull...so will a lot of us....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I've heard horrible things about spinal taps. Especially after reading others comments--I would only get one to save my life.
Tell your docor-NO WAY!
Posts: 366 | From MA | Registered: Apr 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Oh siggy!
Don't do the spinal unless you are ruling OUT other illnesses. It is not used to RULE IN lyme. Just used to rule OUT other things like MS.
Is it worth it to get to another place in the EU to get a doc to start treatment????? I dont know what your system is like and how you can break thru it.
I dont understand how the test paper said look at clinical picture and the doc didnt think that was VALID? Maybe you need to go back over that part with him or call to talk with a nurse and ask about that part. Your clinical picture ALONG with the positive tests are all you should need. THere is plenty of literature out there supporting that. Even the CDC has made an slight effort to advertise the fact that Lyme is a CLINICAL diag, not based solely on these tests.
Your chances of having a positive spinal tap are very slim. THis could be devistating to you. The tap itself can be done safely and painlessly, but you NEVER know. Mine was not safe or painless, and I needed a blood patch and almost died from leaking spinal fluid. not fun.
There has to be a way for you to get thru!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I am in touch with the euro-lyme and another support group. there is only one hospital in Norway and only one doc (that we know of) that has specialised in Lyme.
And I am in touch with someone who is helping me alot. He has gone this road before with his son, but is still not getting anywhere. It is a crazy system!
I am getting more and more worried about taking a spinal tap, as it is most likely going to be considered a proof that I am not having an infection. And MS is already ruled out.
I will try and get to see the lyme-doc i told about.
Posts: 155 | From Norway | Registered: Jan 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Siggy,
The only thing the spinal did for me and my uninformed neurologist was to give more ammunition to the dumb ducks that I did'nt have lyme disease.....
When in reallity I was positive IGM blood test in the same time period the spinal was taken and came up negative...
Don't bother.....good luck..........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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