posted
I am so confused here. I started having anxiety/panic problems about 4 months ago along with cloudy thinking, lethargy, tremors in my body, ringing in my ears, sound/light sensitivity, tingling sensations on my forehead. I finally talked my doc into testing me for lyme and he did do a western blot through Quest Diagnostics services. It came back positive for 41 KD IGG Band, so he tells me that he doesn't think I have lyme. As I understand this is specific for the tail of the bacteria. I have an appointment with a LLMD next Wed. and don't know if I should keep the appointment. They keep telling me this is all in my head and I don't believe them. I feel terrible emotionally and physicaly. I used to be an athlete and I am falling apart here.
Since I had one of the bands come back positive, I assume I should still go to the appointment. I have all these symptoms and one positive test. What do you all think?
Posts: 37 | From kansas city,mo | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Keep your appt. Quest is not very accurate.
Also, LLMD's will do a differential diagnosis, so if it's not Lyme, they will likely be able to help you figure out what it is.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- 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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posted
Please keep your appointment. It is not all in your head. I had doctors tell me the same thing. You want a Western Blot from Igenex, but mostly, you want a doctor that will diagnose from a clinical perspective and not just from tests.
Hang in there. Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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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 decieved 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
From what I understand the 41 band is specific for the lyme tail. I would think this is significant enough. My PCP seemed upset that I am not going to an infectious disease specialist he recommended to me.
Posts: 37 | From kansas city,mo | Registered: Aug 2007
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posted
I did a google search for "western bloth 41 kilodaltons" and got back page after page of lyme info. I guess I will keep my appointment. I have been searching for answers for months now and when I found one, my PCP shot it down. I will for sure keep my appointment. I guess with my symptoms and the fact I got one positive band I will be in line for treatment.
I do appreciate all the replies and thank you all for your time.
Posts: 37 | From kansas city,mo | Registered: Aug 2007
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posted
The same thing happened to my son who only tested positive for the 41 band. However he was very sick with alot of the same symptoms you have.....tremors, sensitivity to light and sound, tingling in extremities, plus heart palpitations, headaches, insomnia....... He was told by many doctors that this wsn't Lyme, But it wasn't until we found a LLMD who treated him that all the symptoms diminished.
Posts: 3 | From CT/DC | Registered: Sep 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I was tested and only had band 41 IGG show up positive, but I was pretty ill and had many, many symptoms for lyme disease. That and I was tested for so many other things before I even thought of lyme. I didn't even THINK of lyme disease, let alone know what it was at the time. None of the 7 or so doctors I went to thought of lyme (but that's not a surprise now that I know more about lyme and everything that goes with it).
I sort of diagnosed myself (as a lot of us have done) by just googling our symptoms. The doctor who agreed to test me for lyme told me after getting the results (which was only 41++ IGG positive) that he did believe I had lyme. This wasn't even a LLMD. I am now going to an LLMD and he believes I probably have lyme or a co-infection as well.
I had the Western Blot done by Igenex, by the way. Maybe if you have it done by Igenex you'll get more bands to show up. I know what it's like to only have one band positive though and it's still scary. Even though I have two docs that think I have lyme and/or co-infections, I still want something substantial -- like more bands or another test to tell me that I have it. It's hard to not have a validation. I understand completely.
Definitely see a LLMD.
-------------------- 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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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
quote: They keep telling me this is all in my head and I don't believe them.
You should agree with them.
It's true this is all in your head and that's why you have so many different symptoms.
Otherwise, you would just have 2 or 3 of them, would be much better than now...
However, we have totally different explanation on this from ducks.
It's a infection of the nervous system vs. it's a psychological problem.
So we have a reason call them ducks.
P.S. I had most of your symptoms and Igenex test is CDC positive for Lyme, while Quest titer test came back negative.
So if you have extra money, seeking Ignex test may make more sense.
posted
Please keep your appt with the LLMD and stay away from the ID duck.
Hugs, Perplexed Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Band 41 is NOT NOT NOT specific for Lyme AT ALL
BUT
people can be completely 100% NEGATIVE serologically and STILL have LYme- so please do go to your LLMD appointment!!!! You COULD have Lyme disease*)!!!!
-------------------- 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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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
from Carl Brenners explanation of Western Blot:
the first band to show up on a Lyme disease patient's IgM blot is usually the one at 41 kDa, followed by the OspC band and/or the one at 39.
The OspC and 39 kDa band are highly specific for Bb, while the 41 kDa band isn't. That's why the 41 by itself isn't considered adequate.
-------------------- 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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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
My only positive band was 41. I've posted here a LONG time and definitely have Lyme as diagnosed clinically, by herxing response, and overall good results with antibiotics. Go for the Lyme.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by David95928: My only positive band was 41. I've posted here a LONG time and definitely have Lyme as diagnosed clinically, by herxing response, and overall good results with antibiotics. Go for the Lyme.
Ditto -- that is, I have the same story. Blood tests do not matter to me at all, because lyme is a clinical diagnosis. With two tick bites in endemic areas, two bulls-eye rashes, lyme symptoms and a definite good response to abx, I have only ever had band 41 show up positive on blood tests, to my knowledge.
So blood tests have been pretty useless for me. Fortunately, llmds have treated me based on history and symptoms and their clinical experience.
Keep the llmd appt.
Posts: 2557 | From home | Registered: Aug 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
The only other two illnesses that I have heard will show band 41 is syphilis and gingivitis. Even LLMD's consider it to be an inconclusive test, but will still treat if you show the clinical symptoms, which it sounds like you do.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by sixgoofykids: The only other two illnesses that I have heard will show band 41 is syphilis and gingivitis. Even LLMD's consider it to be an inconclusive test, but will still treat if you show the clinical symptoms, which it sounds like you do.
Thanks for commenting with this.
I only had band 41. I know I don't have gingivitis. I am pretty sure I don't have syphilis. I think I'd know from the first symptoms you get, but who knows. I'm still kind of trying to figure out if lyme is really what I have. I am pretty sure it is, but not having a positive test is driving me nuts. My LLMD thinks I probably have lyme, but I'm still so confused. Maybe I should have a blood test done for syphilis. :\
-------------------- 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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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
When you get your blood tested at a reliable lab, you may get a clear answer.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
just get treated.. you are in the same boat as I was in 94 with the tingling in the head..you sound like a lyme case..please get treated..you dont want late stage.. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
In June I had 11 of 14 positive IgM bands per IgenX.... August I had "a negative test" per another lab. I did NOT have treatment in the meantime. I have significant neuro symptoms like you.
Posts: 70 | From AZ | Registered: Sep 2007
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quote:Originally posted by barksplinter: In June I had 11 of 14 positive IgM bands per IgenX.... August I had "a negative test" per another lab. I did NOT have treatment in the meantime.
Wow!! That pretty well sums it up!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
IGeneX tests are more sensitive to different strains of Bb but don't let anyone tell you "ALL" their tests are positive in an attempt to discredit the lab. Below is some info on IGeneX.
In testimony given at the Informational Hearing on Lyme Disease: Issues in Diagnosis and Reporting, Wednesday, February 25, 2004, to the California Legislature Senate Committee on Health and Human Services (Deborah V. Ortiz, Chair) Jyotsna Shah, PhD, CMLD, MBA, Vice President of Research and Development Dept. and Laboratory Director of Clinical Reference Laboratory, IGeneX Inc. of Palo Alto offered the following:
``For the year 2003, just to give you an idea, we had tested 698 patients suspected of Lyme disease. Three hundred and ninety-four were positive by either Western blot or antigen test or PCR. If we had gone by the CDC criteria only, we would have missed 70 percent of this 394 cases.''
In other words, 56% of the Lyme disease tests performed by IGeneX Laboratory in 2003 were positive.
This testimony is on the public record.
At the 2005 ILADS conference, Jyotsna Shah, PhD,CCLD, MBA, said that IGeneX scored better than 95% in the stringent NY proficiency tests from 2001-2005. Out of 58 labs, only IGeneX had a perfect score on Western blot proficiency. In recent tests for 327 patients, 238 were identified as positive by IGeneX criteria. Only 112 would have been correctly diagnosed using the CDC surveillance criteria.
BTW IGeneX tests or any proprietary tests done in house, that are not "kits" sold for commercial use, do NOT require FDA approval.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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As bad as a herx can be - we're lucky that we have it as a litness test. If u take abx & herx - there's your answer. I stopeed spending $ on testing when even on IgeneX was neg except for the 41 band. An LLMD will know based on symptoms. Plus, u could have co-infections - that only an LLMD will test for.
Better tests are out there - they are just being constantly blocked at the approval gate. Blame the gatekeeper!
You know when your sick - trust that intuition. God gave it to us for a reason.
It is normal in the beginning to want that validation - after a while u learn - sympton free is disease free, or shall we say disease remission...
Best of luck & let us know!
Posts: 176 | From Tenn | Registered: Jul 2004
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