Topic: How long do dead spirochetes stay in the body
sutherngrl
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posted
In other words how long before you pee them out after they die? I ask because I have an Igenex PCR or DNA urine test in my closet. Been there for almost 2 months now. I was going to do the test, but waited to get my third WB from Labcorp back to see what showed up on that.
Since I now have IGM bands 41 and 23, I have become more convinced that I do indeed have LD. Also I am starting to improve on low dose Doxy of all things. The only thing that has really helped me so far.
So is it a waste to spend $400 on this inaccurate test? On one hand, if it comes back positive that would tell me I am killing off spirochetes and it would be a total positive for LD. But on the other hand, I am finally starting to improve after a year and a half of treatment, so would you do this test or not?
I know I already ask this weeks ago, but still pondering whether its really neccessary. And I really need that $400 with the Holidays coming up.
And my original question, how long do the dead spirochetes hang around in your body? I mean is it a few hours, days, months, a year?
posted
Good questions - I'd like to know too SG!! Just popping in to say I'm glad you feel more certain about the LD with the two bands.
I personally regret spending the $$ on the Igenex PCR test, I expected a positive one being so sick for so long - but it didn't change my course of treatment so I have to admit at least in my case it was a waste of $$.
However if you want to continue testing I'm sure others will give you better advice if they got positive tests and whether that changed their perspective on their illness.
In any case glad you're also finally seeing some improvements, way to go!! Hope it continues for you!!
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Keebler
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- Even PCR can't always tell for sure.
You obviously have a good LLMD treating you, you can get your medicines and are improving. Lyme takes a long time to treat effectively, even with a PCR, that won't change.
However, even if you don't have a good LLMD, your Western Blot and clinical presentation will convey lots of detail to a LLMD.
Treatment should last for at least a couple months after all the symptoms are as clear as can be expected. No test can say for sure when that time is. Your progress is the determining factor at that point.
I don't see why you need a test that most doctors will discount, anyway. Even if you had a clear case of lyme, complete with bulls-eye and glowing positive labs, most IDSA doctors still think it can be cured in a week or two, anyway.
In fact, even a positive PCR will not convince an IDSA doctor that you have lyme. They also want to see the bulls-eye and it has to be current to meet their ridiculous criteria.
--
Have you been tested for COINFECTIONS such as babesia and ehrlichia, bartonella, etc? I think it's more important to consider those as treatment will vary and if you have a coinfection and it is not addressed, your improvement may be thwarted.
If you have been assessed &/or tested for coinfections, that money can go toward treatment and support measures. --
However, in answer to how long the dead spirochetes will be clearing out, my guess is as long as they are there and the abx are effective.
Your LLMD or Igenex would be the best source to ask:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- ping wrote this today in another thread, I thought it relevant here. With your + IGM (even if not by CDC criteria) and in light of Dr. C's explanation, I'd save the money for treatment.
ping writes: `` . . .Please keep in mind that with many of us, myself included, it wasn't until after three, almost four full years of tx until I felt really decent again. . . . ``
(ping) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
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Thanks Keebler, very good point made by Ping!
Yes my 2 bands would have been an IGM CDC positive, if they had shown up together; but the band 41 showed up first, then more recently on another WB, band 23 showed up.
Still wish someone had the answer as to how long the dead spirochetes hang out in our bodies.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
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- Igenex has always had answers for me. That link above give you their phone number. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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ping
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quote:Originally posted by sutherngrl: And my original question, how long do the dead spirochetes hang around in your body? I mean is it a few hours, days, months, a year? SG
Hmmm. When I read the title of your thread and I see this last paragraph, I take this question differently than in the manner of what you might really be asking.
If you're asking how long before you can test again, then Keebler is right when suggesting to call or email Igenex. I thought that a number of the bands on WB were meant to detect parts of dead B. spirochetes (heat shock proteins, etc.), so Igenex has the call on that one.
Re: How long dead spiros can stay in the body. The answer is basically forever. Parts of the spiros break off in deep tissues, etc. and can circulate or be lodged indefinitely. This doesn't mean they're active, just dead debris that the body hasn't, or can't get rid of. It's also possible these dead parts can produce toxins for a very long time.
I don't have an absolute answer, but I think this is what I understood from all the docs, research, fellow pts. and the whole slew of other info I've collected over time. I'm sure someone will come along with something more definitive.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
A positive PCR would not convince an IDSA duck?? They're dumber than I thought.
suthern.. I would call Igenex to ask.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sutherngrl
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Ping, No not asking how long before I can test again.
I was literally asking how long the dead spiros stay in the body. And your answer sounds very reasonable.
I can see how they might hang around in tissue or circulate for a long time before leaving the body. That is the answer I was looking for.
This is what the urine PCR test would be picking up, the DNA of the dead spirochete. But it is pure luck if you happen to catch it in a 3 day urine test.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
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-
In reply to Lymetoo's question: " A positive PCR would not convince an IDSA duck??" --
The IDSA is also well known for thinking that false positives are flying all over the place. Some IDSA doctors do not regard any test for lyme as accurate and, even with a positive test, there are several other things that must happen at the exact same time for a person to be dx with lyme, according to IDSA criteria.
It has to be current, recent, not long-standing -- among other things, according to their criteria.
Again, even with all their criteria met, 1-2 weeks' treatment is all you'd get, 28 days, tops, with only one drug, nothing for the cyst form/L form, or to help break up biofilm - and no consideration of coinfections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- From the CDC (IDSA doctors use CDC criteria) -
They will not accept urine antigen testing (see last part, below):
Lyme Disease Diagnosis (Page last reviewed September 29, 2009)
1. (paraphrased) the ELISA or IFA has to be the FIRST TEST and must be positive. Then and only then,
2. (paraphrased) The Western Blot (ultimately, the IgG WB) has to be positive, according to CDC criteria
Excerpts:
`` . . . Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.
CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA. Doing so increases the potential for false positive results.
. . .
Other Types of Laboratory Testing . . .
Some laboratories offer Lyme disease testing using assays whose accuracy and clinical usefulness have not been adequately established.
These tests include urine antigen tests, immunofluorescent staining for cell wall-deficient forms of Borrelia burgdorferi, and lymphocyte transformation tests. In general, CDC does not recommend these tests. . . .
- end quotes.
============== ==============
Okay, so they finally admit not everyone gets the bulls eye rash.
Still, it is very, very sad - and beyond - that with this lastest update of about 2 weeks ago, the IDSA still thinks ELISA is a good test and does not understand the IgM nature of this.
And for them to think that if a person has been ill for a month, that it cannot be lyme . . . it is criminal behavior in the face of all the research to the contrary.
These guys should go to jail for their negligence. -
[ 10-13-2009, 05:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
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I know what you mean Keebler. The IDSA will never admit that Chronic lyme exist, even in the face of pure DNA.
Now that is stupidity!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I think that the IDA is guilty of intentional negligence and they should be held accountable. Maybe if they realized they would be tied up in court they would stop playing these games.
Sutherngrl, my llmd said band 23 is very Lyme specific, and 41 is the tail, the flaggelin. The CDC guidelines just don't matter. Hey, if the tail is there....then the organism is too. I'd save the $ for treatment and supplements, and the Holidays.
Your coinfections are important to identify, if you haven't done that already. That can be done by testing, though unreliable, and by symptoms.
Do you have flares, or Herx reactions? Those may be the worst when you're killing organisms as the neurotoxin level increases then. So you can tell when the death toll is at it's highest.
-------------------- Linda Posts: 39 | From Lexington, Virginia | Registered: May 2009
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sutherngrl
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Linda, I agree that the IDSA is guilty of negligence. Can't believe how long they have gotten away with it and how many people have suffered severly because of it.
Actually after a year and a half of treatment, I now am starting to notice a cycle of flares and or herx. Before I just felt like crap all the time and could never tell the difference.
I can pretty much tell when the spiros die off, just didn't know how long they would stay around in the body. Do the dead pieces get hung up in the tissue or do they float around in the blood or kidneys for long periods of time?
And yes I have been treated for co-infections.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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