posted
I only had this one band show up on the Western Blot (P41) and I have had a ridiculous amount of all the symptoms that could be related to Lyme, the most profound of them being fatigue. I have been ill for over 20 years now and have never been treated for Lyme and was wondering if it would be likely that I would only have one band come back positive. The doc says because it was the P41 band and with the symptoms that I have that he wants to treat for Lyme.
Posts: 39 | From Alabama | Registered: Jul 2010
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posted
Yes, search for seronegative lyme...you are not producing antibodies to fight the infection, it is quite common.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
Which lab??? If it wasn't Igenex, then get retested. Here is info on Band 41.
VITAL INFORMATION ON BAND 41!!!!
From a seasoned poster (not Lymetoo)
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: 96222 | From Texas | Registered: Feb 2001
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posted
Thank you Kimmie and Lymetoo. The lab that performed the test was the infamous LabCorp.
I am looking forward to starting treatment and hoping it gives me a little bit of my life back. The only way I am surviving or participating in life at all these days is with the help of amphetamine salts (Adderall). Without it, I would just be lying in bed or on the couch all day as I would be unable to keep my eyes open or have the energy and strength to participate in the least little activity or work. Posts: 39 | From Alabama | Registered: Jul 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
LabCorp is not able to test for lyme, you need to retest at Igenex.
Posts: 1834 | From US | Registered: Oct 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes, pursue the issue. Lyme Disease is a logical "possibility" when P41KD is seen.
It is important to understand that this protein is seen in a variety of spirochettal infections, but when symptoms of Lyme Disease are pronounced, it's crucial to look at the infectious diseases caused by Spirochetes that can cause that protein to show up, as well as the symptoms you have.
Maybe it is Lyme, maybe it isn't -- but we sure know one thing, you did have contact with a Spirochete. See what I mean?
Investigate Lyme and co-infections thoroughly. Test for Babesia, Ehrlichia, Bartonella, Rocky Mountain Spotted Fever, etc. Sometimes where their is smoke, there is fire -- if you can find another co-infection, then indirectly you can take the leap further to suspect Lyme even more.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It would be wise to check for other infectious pathogens too. HHV-6, EBV and enterovirus can give the same symptoms as lyme. See: www.hhv-6foundation.org for more info and www.enterovirusfoundation.org for more info.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
So I know this seems obvious but I want to confirm what I am heraing. 41kDa is the most important marker for Lyme?
Posts: 357 | From California | Registered: Jun 2010
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posted
Thank you all. I am seeing an LLMD, so I am going to trust that he will treat appropriately. I am starting on minocycline for two months and then will be seen again and re-tested. He said that even if we treat for Lyme, the antibiotic will cover a number of other pathogens that could be in the list of possibilities as the offending culprit as well. I am thrilled that I have found someone who is finally willing to treat me and at the prospect of possibly getting to join the rest of the world once again in living.
There is just too much information to take in at this point with the way I am feeling, so I am hoping that the good doctor knows what he is doing
Thank goodness for doctors who listen to their patients and actually seem to care! Posts: 39 | From Alabama | Registered: Jul 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by mattnapa: So I know this seems obvious but I want to confirm what I am heraing. 41kDa is the most important marker for Lyme?
No. Not in my opinion. The most important markers are antibodies which are specific only to borrelia burdorferi. P41KP is non-specific, but still, valuable.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Turtle~ Antibiotics will not cover viruses...and that could be part of your problem. I would ask your LLMD to test you for HHV-6 and EBV at Focus Lab, and Enteroviruses at ARUP lab. If he is attending the ILADS meeting in October, ask him to listen to the talk "Virus Associated CFS--the Stanford Perspective."
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Well, I am going to go with the doc's hunch at this point until it seems we are "barking up the wrong tree". But in the past, whenever I would get treated for UTIs or URIs or weird skin infections, it would seem that I would actually sometimes respond somewhat to some of the antibiotics that I have taken over the years to only then relapse right back to feeling horrible again shortly thereafter. The LLMD I am seeing came highly recommended, and I have heard a lot of good things about him, so we will just wait and see...
There are so many symptoms that I have had over the past couple of decades, that I didn't even hardly scratch the surface when I saw this doctor. I only described to him the symptoms that I am presently having, which at this point do not sound or seem nearly as strange for a person of my age and build as the ones that I was having in my late 20s on through 45+ years old.
Posts: 39 | From Alabama | Registered: Jul 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
My first test from Specialty Labs had only one postive band: the 41 band! It's been downplayed some as being cross reactive with other bacterias, but I say it's significant enough!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
Sorry to gring this back, but I am still a little unclear. Could you say that 41 is necessary but not sufficent in identifying lyme. In other word is it an essential starting indicator which will need additional to have a firm diagnosis. And with respect people, please do not tell me an LLMD needs to make a clinical diagnosis. I do not dispute their expertise, but they have criteria too. And I think part of the exercise in this board is trying to understand what their cxriteria are
Posts: 357 | From California | Registered: Jun 2010
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posted
Thanks Lymetoo. By necessary I mean that if you do not have a positive 41 can you you still be positive for Lyme?
Posts: 357 | From California | Registered: Jun 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Your doc will most likely re-test in a few months of you taking antibiotics, and more bands are likely to show up then. It did for me.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
If you are starting minocycline, you will get the herx from hell. My daughter had been on antiobiotics for a year, then switched to mino.
She had to lower the dose to 50mg (I had to open capsules and split the powder) once a week. It did help her a lot, though.
Posts: 2903 | From AZ | Registered: Feb 2006
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