posted
For the last 3 months I have been feeling ill, it started with numbness tingling in my feet and hands, and an uneasy / off balance type feeling. I have also had what I would consider heartburn, lung soreness, heavy legs and arms, and occasional headaches, and low body temperature 97.2.
I have had 3 ELISA tests, all of which came back negative.
I have had MRIs of my brain, spine, and a nerve conduction study which were all negative.
I have just gotten back my WB results, and the Igm and IGg were only positive on the 41kda.
Should I conclude that this is not Lymes? I have read that the 41kda is the most important, but also I have read it points out any flaggela type bacteria?
Any info will be helpful, I got my blood work done by Quest Diagnostics in Maryland.
Posts: 25 | From US | Registered: Nov 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi -- I'm sure others will chime in here, but Quest is not a reliable lab when it comes to Lyme testing. They are notoriously insensitive and don't use the criteria that is required for true diagnosis. You must get your testing done by Igenex lab in CA...www.igenex.com.
Call them to get a test kit and have your doctor order the blood draw for you.
Posts: 3528 | From US | Registered: Apr 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sorry about your runaround with the tests I did that from 1988to2003 when i got a llmd and produced 2 different tests Lyme DOT-BLOT 3 day urine test and Western blot .
Llmd put me on abx's to prime the tests. If your body made any antibodies this sets them free they become unattached because spirochetes die. Also any pieces parts of dna show up when there dead. Elisa is worthless by itself just plain bad.
The 41 band has been said to cross react but it is also true that it is one of the only bands if you have lyme in,new infection or old that will show up everytime. Funny how it was denounced by some.
read these links over and over
41Kda #1 41Kda #2 Go to newbies link bottom page 2 read all this
Vaccine 2007 OspC This is the one in Humans expression!! Vaccine 2007 OspC OspC Information
Laboratory Tests By Tom Grier M.S. Three Main Categories of Lyme Disease Tests: Laboratory Tests By Tom Grier M.S. Western Blot Info
Band 41kd Most important? More on 41K FDA It is important that clinicians understand the limitations of these tests ILADS W Blot Explaining Borreliosis (Lyme) Western Blot Tests Explanation of Western Blot Bands Igenex Labs on the Western Blot Melissa Kaplan's Lyme Website Explains Western Blot Dr. C Explains Western Blot Western Blot ( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. - = Not Present + = Low ++ = Medium +++ = High +/- = Equivocal = Indeterminate its there but not as intense as low) )
See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Dear Forbin,
People can truly be 100% blood negative and have Lyme disease. One such person was Glenn Edward Killion, who died at 36 without a single positive blood test and who had multiple negative spinals. Dr. Paul Duray of the NIH found spirochetes in his heart andbrain tissue post mortem.
The following is another person, Vicki Logan. It DOES happen, people can be 100% blood negative and still have it. So no, I wouldn't assume you don't have it- band 41 means nothing though, it is not diagnostic IMO.
Have you been tested for Babesiosis and Ehrlichiosis? That would be my suggestion!!! Best wishes, Sarah From "The New York Times", 1993. A few excerpts.
Lyme Disease: Does It Really Linger? Those who claim long-term ailments pose a puzzle. By Elisabeth Rosenthal
From her bed at Northern Westchester Hospital Center, Vicki Logan begs to differ with academic scientists who claim that there is no such thing as chronic Lyme infection and that Lyme is cured with at most four weeks of antibiotics. Since 1987, Ms. Logan has battled headaches, fevers, fatigue, pro- gressive paralysis, seizures, periods of dementia and memory loss so severe that she remembers only the previous three weeks out of the last year. For much of her illness doctors told her she could not pos- sibly have Lyme disease and prescribed no antibiotics. Two years ago Dr. Kenneth Liegner, a Westchester internist, decid- ed to buck conventional wisdom and try giving her prolonged courses of antibiotics that could kill the Lyme spirochete: she improved some- what during each course of the drugs, and relapsed when they were stopped. Dr. Liegner became convinced that Ms. Logan had chronic active Lyme infection that could be controlled but not cured through daily drug treatment. Others, including consultants at the Mayo Clinic, disputed the diag- nosis, saying that after months of antibiotics, Ms. Logan - if she ever had Lyme - had certainly been cured. But recently, Dr. Liegner was vindicated: scientists at the Centers for Disease Control and Prevention in Atlanta found the Lyme spirochete, Borrelia Burgdorferi, swimming in a sample of Ms. Logan's spinal fluid. ........... A handful of cases like Ms. Logan's are challenging conventional assumptions about Lyme disease and igniting a fiery debate about the usual course of this increasingly common infection: Are disastrous experiences with Lyme like hers the rare exception or the rule? ........... The Lyme organism is extremely difficult to culture, particularly when the disease is advanced, so doctors are left relying on indirect and imperfect tests to determine if a patient with continuing symptoms is infected. The current Lyme test detects the patient's immune re- sponse to the parasite and is prone to false readings. In most cases it is impossible to say with certainty that a patient harbors the bac- terium. Even among patients whom all doctors would agree have Lyme infection of the central nervous system - who have a known tick bite, a typical Lyme rash and test positive on all current tests - only 10 percent have spinal fluid samples in which scientists can find the germ. "In most infectious diseases, you don't diagnose until you identify the organism - which is the sine qua non - anything else is inferior," said Dr. Mark Klempner, a Lyme expert at Tufts-New England Medical Center. "But in many cases of Lyme we're stuck. We can't find the bacterium. Until we have a better diagnostic test that actually finds or measures multiplying bacterium, we're going to have problems knowing which if any of these patients have an ongoing infection and who might benefit from treatment." ........... Researchers have come to believe that chronic Lyme may be dif- ficult to detect and treat because it is caused by a very few free float- ing organisms that are confined to the joint spaces and central nervous system - sites that many antibiotics do not reach. Recent work in Dr. Klempner's lab has shown that the spirochete may spend at least part of it's life cycle inside cells, where they are similarly protected. ........... Unfortunately, scientific advances have not clarified whether the small number of well-documented cases of chronic Lyme represent anomalies or the tip of a huge iceberg. ............ There are similarly loud disagreements about how often people who test negative on the standard Lyme antibody tests can nonetheless have Lyme disease. It was because Ms. Logan initially tested negative on this test that she went untreated for years.The newer lab methods have proved that this is possible, but no one is sure how common it is.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Did the neurologist who did your nerve conduction study have any insights for you?
Get tested by a real lab!! =========================
VITAL INFORMATION ON BAND 41!!!!
POSTED BY ALIGONDO BRUCE:
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I have been tested for many viruses, vasculitis, all my blood work has been normal. My doctor always says I look and my stats / blood results are perfectly healthy, unfortunately, I feel terrible everyday.
Posts: 25 | From US | Registered: Nov 2007
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quote:Originally posted by webmeg: Since Lyme is a clinical diagnosis, given your symptoms and 41++, is your doctor willing to give you 6 week of Doxycycline to see what happens?
Couldn't hurt... 400mg a day sounds good to me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
One more question, those of you who had Neuro symptoms and went to a neurologist, did they find anything? My legs and arms feel heavy and have wierd sensations, but the neurologists nerve conduction study showed all was normal? Any comments will be appreciated.
Posts: 25 | From US | Registered: Nov 2007
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As for neuro appt, I have been told repetitively that nothing was wrong with me as well, over and over and over again. Funny my WB came back positive and so many sx gone after and through tx!!! Feeling much better!!! Not all the way there by any means!
Dont give up, listen to your body!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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quote:Originally posted by F0rbin: One more question, those of you who had Neuro symptoms and went to a neurologist, did they find anything? My legs and arms feel heavy and have wierd sensations, but the neurologists nerve conduction study showed all was normal? Any comments will be appreciated.
I can't speak for myself, but I've seen TONS of people here on Lymenet over the past 7 yrs with the same scenario!
You are not alone!!
Maybe if you do a search on MS or neuro symptoms here, you will find threads about it.
Look for the little word "search" above and type in "MS" or "neuro" or "neurologist"....
BTW, neurologists are clueless when it comes to Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
My Doctor has agreed to give me Doxycilline, for 4 weeks, at 300 Mg a day. Is this a high enough dosage to kill the spirochetes? I will be getting another WB at the 6th week, after being on the abx for 4 weeks. I educated my PCP on what I'm trying to do, he agreed it was worth a try.
Also, is there a bad herx associated with Doxycilline, and should I start feeling better while on this abx? Do any of you guys have examples of how this made you feel, and did you feel better?
Thanks
Posts: 25 | From US | Registered: Nov 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by F0rbin: Is there a bad herx associated with Doxycilline, and should I start feeling better while on this abx? Do any of you guys have examples of how this made you feel, and did you feel better?
I herxed while on Doxy. I was very dizzy and woozy just from Lyme, but when I got on Doxy it made me even more dizzy -- I could be sitting down being still, and I'd feel like I was swaying back and forth. Not a good feeling. It also made me extremely fatigued.
BUT, it depends on the person and if they have co-infections on top of Lyme and which ones, etc. I don't think you'll feel better RIGHT away, but you could.... It depends on the person. So no one can give you a correct answer really.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by F0rbin: My Doctor has agreed to give me Doxycilline, for 4 weeks, at 300 Mg a day. Is this a high enough dosage to kill the spirochetes? I will be getting another WB at the 6th week, after being on the abx for 4 weeks. I educated my PCP on what I'm trying to do, he agreed it was worth a try.
Also, is there a bad herx associated with Doxycilline, and should I start feeling better while on this abx? Do any of you guys have examples of how this made you feel, and did you feel better?
Thanks
Add another abx to that doxy herxing can be problamatic sometimes you herx quckly like a day sometimes you herx in a week sometimes it can take months to herx it depends on so many factors like how much you are infexted time wise,how good your body removes toxins, and how well the abx kills spirochetes,and theres also the 28 to 34 day thing with herxs its to bad he pcp wouldnt give you 3 months on abx. I didnt herx or couldnt recongnise it the first month of trement but by the end of the second month i herxed continualy then cant remember exactly how long but I think it was like 4 or 6 months I then only herxed at intervales of 28 to 34 days would come on achey then couple of days full blown ahed hurt all over joint pain increased headcold like symptoms it was nasty.
Now that was 5 years ago and now after 4 months of minocin I have hurt so bad the last month aches joint pain major and achey and last weekend i think it was a herx because it doubled to tripled my symptoms.
What Iam trying to say is try abd get a LLMD.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
How bad would you guys describe your twitching. I find my thumb twitching slightly every now and then, and under my left eye it twitches slightly, and my right thigh muscle twitches at the top... but that's all I have for twitching? Is this similar to what you get?
Posts: 25 | From US | Registered: Nov 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
When I was at my worst twitching after slight exercize I couldnt even drink a beer one handed I had to use both . It was bad.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
I have all those neuro symptoms too...the numbness, weakness, heaviness in limbs etc...I have had every neuro test you can think of..EMG's numerous MRI's, spinal tap evoked potentials and so on. All results have been normal. I look normal and they say my neuro exam is normal. I had 3 bullseye rashes at the same time.
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