Lyme Desease

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Lyme Desease

Postby Slavin Balen on March 25th, 2005, 4:03 am

Somebody can dislike following things but this really happened.
Sorry for all grammar errors.
On Thursday I went to see one of the best European Lyme specialist. He is working in Slovenia, country nearby Croatia.
I told him my story. After examing all my lab tests, exams and other medical documentation he said that I DON'T HAVE LD despite at least 3 tick's bites during 2002.
He said that standard European protocol includes ELISA and if this test becomes positive then Western Blot follows. ELISA should be done 2 months after tick's bite. If one takes antibiotics it lasts only 1-2 months. Very rarely 6 months or more!
He thinks that many LD specialist are looking for money and for this reason they are treating patients too long and with antibiotics that are not really necessary.
He said that LD patients with neurological symptoms have paresis on face, fasciculations very rarely. Polyneuropathy can be seen on EMNG.
There is no connection between Chron's Desease and LD. Exists only in theory.
No connection between my tinnitus and LD also.
PCR DNA of borrelia burgdorferi is test which is very complicated for interpretation. In his opinion no one in Europe don't do that.
Conversation with him lasted more than one hour.
Conclusion: Etiology of my twitching is still unknown.
I have not NMD/ALS. I think so; I hope so.
Questions about my LD is ad acta until now!
Slavin
User avatar
Slavin Balen
Hero
Hero
 
Posts: 399
Joined: July 25th, 2004, 7:26 am
Location: Zagreb, Croatia

No LD, so what next?

Postby Davey on March 25th, 2005, 5:52 pm

Slavin -

I'm glad to hear that the LD specialist said that you don't have LD. Now the question is: "What do you have?" All your symptoms suggest BFS, CFS, peripheral nerve hyperexcitabilty. Now you have to find a treatment that will help you cope with your symptoms. One suggestion is to look on the Symptom Management forum to see what others have found helpful. Finding the right approach is a personal thing. Some people avoid prescription drugs and try diet, exercise, stress management, etc. Others embrace prescription therapy. I am in between. I only take my prescription "as needed" except for my thyroid replacement therapy which I will be taking everyday for the rest of my life.

Good Luck!
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
User avatar
Davey
Selfless giver of time
Selfless giver of time
 
Posts: 246
Joined: August 29th, 2002, 5:14 pm
Location: West Lafayette, IN

slaven

Postby eric on March 25th, 2005, 8:21 pm

I need you to understand this ELISA TESTS ARE ALWAYS NEGATIVE,DONT GO BY THAT TEST< YOUR DOCTOR IS 100 PERCENT WRONG!! HE IS NOT AN EXPERT, WE HAVE THE SAME PROBLEM HERE IN THE STATES,YOU WILL NEVER SHOW ON ANY TEST AS THIS IS THE TRUTH,THE ONLY TEST FOR YOU IS IGENEX,PLEASE START POSTING AT LYMEAID AS WE CAN HELP YOU,YOU ARE IN THE WRONG CHATROOM,PLEASE EMAIL ME AND LET ME KNOW IF YOU NEED HELP FINDING LYMEAID,AS FOR CERTAIN MORONS THAT ARE ON THIS CHATROOM,DONT LISTEN TO THEM AS THEY FEEL MISERY LOVES COMPANY...FOLLOW YOUR INSTINCTS......
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby Slavin Balen on March 26th, 2005, 2:47 am

Doctor asked me if I have headache. Headache is one of the sign of tick's born desease, acording to him.
I never ever have any kind of headache which is strange due to my myopia and convergent strabismus.
Slavin
User avatar
Slavin Balen
Hero
Hero
 
Posts: 399
Joined: July 25th, 2004, 7:26 am
Location: Zagreb, Croatia

!!!!

Postby KERI 29 on March 26th, 2005, 7:34 am

That was petty much the same stuff I was told by the lyme specialist.
I do not have Lyme.

Kerri
KERI 29
Member
Member
 
Posts: 27
Joined: January 24th, 2005, 8:32 am

slaven

Postby eric on March 26th, 2005, 3:36 pm

when i was in the hospital and very acute i had no headache, headache and fever are just not there with lyme...
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby Roger G. on March 26th, 2005, 3:53 pm

Look Eric,Please do us so called "MORONS" a favor and go back to lymeaid.I am sure you have plenty of knowledge on this subject, but with your constant insults,It seems you are no longer adding any value to this forum and have worn out your welcome. Not only that but buy the "SOUND" of your text you should really try to relax a little.Anyway goodluck and thanks for stopping buy :!:
User avatar
Roger G.
Hero
Hero
 
Posts: 477
Joined: January 10th, 2005, 6:37 pm
Location: Greenwood Lake, New York

Postby eric on March 26th, 2005, 4:18 pm

everytime I post to help someone else I get shot down, I am not here to squabble with you or any one else on this forum, I am here to make sure that people who present to this forum know that they can have lyme disease.I called davey a moron and it was because he is hurting other people. just because you get a negative test does not rule out lyme disease. this is what slavin has been told and it is untrue.. now I have to really try hard to get slavin to understand the situation, davey screwed that up, why do you constantly attack me...why do you think you are always right?why do so many people on this forum that have lyme diagnosed because of me were told by you that there was nothing wrong?just ignore it is is bfs!that is the problem with you and the others that attack me, I am trying to get the info to people while you stick your head in the sand...some people are not benign and I intend to steer them in the right directions...neuro dont dignose lyme disease and that is the truth, they dont know what it is..

eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby dave y on March 26th, 2005, 4:51 pm

Eric... dude...

your posts are not helpful. you're just trying to shout everyone else down if they don't subscribe to your theories, which you've never articulated very well anyway.

Lyme disease is extremely contentious these days, and the science does not support what you're saying. Your favorite lab, Igenex, has been investigated by health authorities in the past for returning way too many false positives (under controlled tests, btw).

Right now it's not possible to know with certainty what the truth is about lyme. it's even possible that much of what you write is correct. But the weight of the evidence is against that and until you come to the table with more than lyme propaganda, perhaps this isn't the right place for you.
dave y
Hero
Hero
 
Posts: 380
Joined: December 8th, 2004, 12:50 pm
Location: Italy

Postby eric on March 26th, 2005, 5:12 pm

they are investigated because they give the truth,regular lyme tests wont show positive because of the insurence companys making the testing very light.. that is the real problem so I need to make sure people know about that and sorry for calling you a moron, what i think is that you should let people know that if they think that they have lyme then they should go to a lyme chat board as this is very important to posters here. remeber the insurence companys dont want to pay for treatment so that is why the test are so light.. igenex is much and i mean much better at testing...
by the way the people who have lyme on this forum dont post however they email me and tell me that alot of people feel that if they post about lyme that they will get static from some of the people on this forum, and also I might add that alot of people in this country suffer because the doctors were wrong...
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby dave y on March 27th, 2005, 5:23 am

Quick note: I'm not davey, I have a similar handle though...

First, it's amusing lyme protagonists don't want to come here for fear of being harassed when it's clearly the other way around.

And as for Igenex, as I recall, it was a controlled test in which blood known for sure not to be infected with lyme was sent in (without their knowledge). I think almost 40% were false positives. I admit I'm fuzzy on the details but it didn't inspire confidence.

It's strange how this devotion to Igenex seems to draw something akin to a religious fervor...
dave y
Hero
Hero
 
Posts: 380
Joined: December 8th, 2004, 12:50 pm
Location: Italy

Postby eric on March 27th, 2005, 8:57 am

well dave how do you know which are false tests? do you believe this?
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby dave y on March 27th, 2005, 1:03 pm

they used blood known to be negative.

if you're saying it was still positive unbeknownst to health officials, well, i suppose the next argument will be that more than 40% of the population has lyme...
dave y
Hero
Hero
 
Posts: 380
Joined: December 8th, 2004, 12:50 pm
Location: Italy

Postby eric on March 27th, 2005, 1:28 pm

we dont know how many people have lyme,we just know there are inconsistincies in the testing, causing alot of false postitive and false negatives,


eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby eric on March 27th, 2005, 1:31 pm

I also know this to be true as it has happened to many people and that is worth more then those tests.
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Sponsor

Sponsor
 

Next

Return to Experiences with BFS

Who is online

Users browsing this forum: Google [Bot], Google Adsense [Bot] and 2 guests