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428506 tn?1296560999

Online video about Lyme misdiagnosis

I came across this video about misdiagnosis/controversy and thought others might have interest:

http://www.vimeo.com/2354218
11 Responses
428506 tn?1296560999
PS-Pam Weintraub, author of "Cure Unknown," is in this segment briefly.  (I always like her discussions and ideas about Lyme.  She speaks personally from her and her family's dealings with it as well as objectively as a science journalist.)
535822 tn?1443980380
Am going to take a look I have just been reading 'Beat Lyme'
Avatar universal
Visual disturbances: pain behind and in between eyes...feel they are filled, heavy... increment of floaters, also see moving little ''dots'' like sperm swimming. In the dark if i look at a (for example) a computer straight into it its fine... but if its in the periphery I see a cloud or fog around its light (when everything else is dark)..Nowadays at night i see halos around lights (only mi left eye)...this wasnt a symptom before...
Also I see afterimages...like if a hand is waving I see a short afterimage that stays there for a milisecond, but it wasnt like that before.

Other symptoms: occasional tension headaches, arms feeling tired, bruning sensations, sometimes I feel dizzy, sort of disoriented...that I need to focus too much to do basic things... pain in upperback and neck... now sometimes i feel my knees hurt a bit, its not an intense pain, but theres something wrong there.... same thing with my right wrist and one nuckle in my left hand. Sometimes i get the muscle twitches. Sometimes I feel pressure in my chin, cheecks, gums... feeling of being offbalance even thought nobody can tell (I am not falling down or anything). Everything started july 2008 with a sudden onset of confusion, feeling of depersonaliztion, detachment, not being ble to process info...memory loss etc that lasted like 11 days...and then all these other symptoms appeared gradualy, some dissapeared, but theres is always something going on.

Anyway so nobody finds anything, i have been feeling bad for a year now... have had 4 MRIS of brain (1 of spine) so far...all normal. Blood Work (regular ones and one testing for heptitis B and C IgG)... all normal...hiv normal...(negative)... 2 visual evoked potential normal... visual field test normal, optic nerve tomography normal (no optic neuritis)... so neurologists think it isnt MS (it was postulated by one neurologist). Can it be Lyme? Y lived until recently in Houston, in the suburbs...but i dont think it is an endemic area!!!! and I KNOW im not imagining these symptoms! but again, none of the drs asked for a lyme test... what are the chances of being lyme and what are the chances of being a disguized MS?!






314892 tn?1264627503
Gaucho-

Have any doctors tested you for Bartonella?
Avatar universal
Hey! No they havent, it seems like they don't wan to find anything since they only want to perform the regular bloodwork... today i forced my neurologist to test me for lyme...so tomorrow I will go and get tested for it... about the bartonella thing, im assuming it won't show up on a regular bloodwork, right? what made you come up with that? I was also thinking about it too...since I have a cat at home that was found on the street, and I waited like 3 months to get it vaccinated and stuff :S

thanks
428506 tn?1296560999
Ticks these days carry more than just Lyme bacteria around.  A lot of us are co-infected with other bugs.  Babesia, Bartonella, Ehrlichia, and Mycoplasma are some of the more common Lyme co-infections.  Co-infections complicate the presentation and treatment, as sometimes the antibiotics that work for Lyme do not work against the co's.
Avatar universal
Definitely could be lyme...I'll never forget when I got these floaters...hate them so bad.  I thought something was in my eye such as mascara, I must've poured water in my eye for an hour.  Then I gave up, I stool still and watched the thing move. I went to the Dr., everyone tried to tell me it was not from the lyme.  I don't agree with that for a minute.  Never had them until I got the lyme.  I had the severe neck problems, had brain MRI's.  I wouldn't be surprised if it comes back with positive results.  Not sure how long you have had it...you may be in the late stage.  I was diagnosed in Nov 2007, after being sick for two months.  Like you. I kept getting sicker and kept going to the Dr., finally I asked him to test me for Lyme, very good thing.  I thank my girlfriend for that.  I wouldn't of told him to test me for that.  I didn't even have a clue what it was until I was diagnosed with it.  Hope you get results fast and get meds.
Take care
Chatter
Avatar universal
Lyme is everywhere.  Drs like to say it's only in New England, but I was looking at my very old 1992 Merck Manual the other day, and even then, 17 YEARS AGO!, the stodgy old Merck folks said:

"[Lyme Disease] is cause by a newly discovered spirochete, Borrelia burgdorferi...The disease was recognized in 1975 [and it] has since appeared in 43 states in the USA...  It has become well recognized in Europe and has been reported across the USSR [now Russia] and in China, Japan, and Australia. ... For several years, [Lyme Disease] has been the most commonly reported tick-borne illness in the USA."

That was written seventeen years ago, folks!  And not by some fringe publication.  Sigh.

Gaucho, the variety of Lyme bacteria you may have encountered may not show up on the tests used there in Argentina -- don't know.  There are hundreds of strains of Borrelia burgdorferi, many of which aren't found on tests, and having a doctor with an open mind who will pay attention to your physical symptoms as much as to the test results is important.  Maybe they can ship your blood sample to the US for testing.  

Good luck, let us know how you do.  
Avatar universal
Thanks Chatter and Jackie for the reply. If they dont find any Angtibodies agains the Lyme bacteria, should I ask for a lumbar puncture and see if they find it there? I been feeling odd like this for a year (5months I was in Houston, TX, then I moved back to Argentina)... So the MRis, visual evoked potentials, regular bloodworks were performed in both countries and they both showed everything was normal. The Lyme test (blood) Im about to perform it here in Argentina... hopefully they will say something, Im tired of no anwsers. The weird thing is that if it is lyme I never got a ''flu like'' symptom that I recall, my joints arent swollen...even though my right wrist hurts in different positions and one of my left nuckels too. My upperback keepts bothering, i would move to relax my back and it will crack everytime... no headaches today but my eyes are sorta swollen. Any of you that are medicated...are you experiencing any relief?????
see ya
Avatar universal
Hello.
I was on doxy for approx 21 days, I did get better, however a year later, a rash developed and severe neck pain also.  Not sure what's up with that... I have my days I guess.
Take care
Avatar universal
Good video.
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