i was just at the dr for various symptoms and my dr said since I only had one positive band (41)
in the Western Blot that I don't have Lyme. He is treating me with effexor for anxiety.
2 months ago I started taking doxy for lyme that another dr told me to take because of my symptoms and the test.
I go to an ID dr on monday, but now I don't know why. This is ridiculous.
I know I have anxiety because I am worried about my health.
You are all going to tell me to find an LLMD, right?
Posted by kitkat32 (Member # 9682) on :
Exactly...find an LLMD.
My doctor of 15 years still does not believe I have lyme. I am positive by IGG standards and I am also positive for bartonella through 2 different labs.
Most GPs and IDs don't really understand this disease. If you suspect you may have lyme/co-infections you need to be evaluated by an LLMD.
kit
Posted by Lymetoo (Member # 743) on :
Then you may as well PASS on the ID doctor! He will tell you the same thing!!
Find an LLMD!!
++++++++++++++++++++++++
VITAL INFORMATION ON BAND 41!!!!
From a seasoned poster:
the number of people exposed is in the millions. the reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. the bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood. they don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
this statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. it allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
why? it's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution. it's likely a bioweapon. north american disease is different from european disease...lack of CSF antibodies, for instance. a much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. the CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. if late disease was rare, we'd be able to get treatment. unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
think about this...allen steere wouldn't listen to polly murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call fallon. Now, fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated. Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
think about it. it's a horrific scandal and I'm not sure how much longer these *******s can keep control of it.
Posted by Dawnee (Member # 15089) on :
Yep... LLMD. You just described what most people on here described before they saw a REAL doctor that specializes in Lyme Disease.
Posted by Tif (Member # 12701) on :
My initial WB only showed a positive band 41........been there done that.
Get to an LLMD...actually be fortunate that you had one positive band, many on here never show any positives at all........
Posted by Angelica (Member # 15601) on :
Lymetoo you just woke me right up and I have barely started to drink my morning tea yet.
Okay I have wrapped my mind around bioweaponized Lyme before but the thought of bioweaponized bartonella is even scarier. Bart certainly did a number on my brain when I first presented with it.
I think it is time we all woke up around here and figured out some way to expose this before more and more humans have their lives ruined by a cold evil group of Wormsers.
Posted by Stefanie (Member # 16084) on :
I found an LLMD in my area, he does all his tesing through Igenex.
Is that who we want for testing??
Posted by randibear (Member # 11290) on :
yes go with igenex.
my pcp told me "there is no lyme in texas" and the infec doc i went to, after 3 months, told me "well i never thought you had lyme anyway and we've never been able to duplicate igenex tests."
so only go to a llmd. otherwise it's a waste of time and money, plus your life...
Posted by Meg (Member # 22) on :
I don't know how you found this newest Dr, but you should post in the Seeking a Dr section of this site to find a reliable one.
I found a "Dr" years ago who did test thru Igenex, but he wouldn't treat me for lyme unless it was CDC positive.
Go with an LLMD recommended by the lyme Community.
Posted by Lymetoo (Member # 743) on :
Angelica, that was written by "Aligondo Bruce".. It is posted in the replies to Dr C's Western Blot Explanation.
Glad it woke you up, but I can't take the credit for his expose'.
Stephanie... Please get your LLMD names from this site or from another Lyme site. Don't get referrals from those who don't know the score.
Posted by Angelica (Member # 15601) on :
Well you still can take credit for waking me up. I just wish I knew how we could expose it. Certainly not on Oprah.
Posted by jocus20 (Member # 11576) on :
Yea i would get to a llmd. Most of my western blots only show 41 band. Sometimes i will get others. aside from lyme you need to be evaluated fro coinfections.
If its not a llmd saying you dont have lyme then i woulndt put any stock in it. He would probably say you didnt have lyme even if all the bands were positive.
Posted by bettyg (Member # 6147) on :
tutu, thanks for posting that and saying who wrote that!! i don't remember it .... leave it to bruce to wake us ALL UP! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Angelica: Well you still can take credit for waking me up.
Thanks to betty too. My big fan club! Posted by Lymeorsomething (Member # 16359) on :
True. Never trust a doctor who suggests your symptoms are in your head without looking hard enough for "real" problems.
Posted by AmyPW8 (Member # 11504) on :
Stefani,
That doctor is crazy. Igenex printed on the bottom of my test that the test could not be use for diagnostic purposes. Diagnosis had to by based on symtomology and patient history.
He must have skipped elementary school where they really drive in the reading direction thing. Posted by Angelica (Member # 15601) on :
Either that or he sat on a tick while he was in med school. That is what I suspect happened to my family MD who told me it looks like you had Lyme in the past but you don't have it anymore.
Posted by Nessa1815 (Member # 15697) on :
Oh my, sounds like my story. I went to every specialist known to man. Even Ear/Nose/Throat doctors. Psychiatrists, Psychologists, you name it.
They tried to give me the anxiety diagnosis for months. Here take this Klonopin, take this Xanax.
My first test was positive band 41 too. Then my second through Lapcorp was positive band 23 and 41.
I just had my first appt with an LLMD exactly a week ago. I start my treatment tomorrow....after Doxy (2 rounds) or Amoxy didn't help.
I gave some more blood to be sent to IgeneX at my LLMD appt.
Skip all the other steps and go to the LLMD. We had to take out a loan to do it but with all of the doctor hopping I did to try to figure out what was wrong with me, I probably spent as much as I would have going to an LLMD in the first place.
Good luck.
Posted by Soleilpie (Member # 8481) on :
Lyme is a clinical diagnosis and should NOT be determined solely by a lab result. Your doctor should be basing his/her decision primarily by considering your symptoms and your history.
Posted by Hides1 (Member # 6348) on :
Prove him wrong! Get more tests done, keep track and write all your symptoms and then sue him! He is wrong and these docs not diagnosing properly need to educate themselves and help people isntead of dismissing people and treating just symptoms. These docs are literally getting away with murder as people get sicker!
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Thanks to betty too. My big fan club! ![[lol]](graemlins/lol.gif)
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