I posted for the first time about a month ago. At that point I was pretty convinced that I had Lyme, but now I'm not so sure. I just got the results of the Advanced Labs Borrelia culture: negative.
These are the Lyme-related tests I've had:
Babesia FISH (Igenix): Negative Bartonella ePCR (Galaxy): Negative Borrelia culture (Advanced Labs): Negative Lyme Western Blot: IgM bands 23, 39
So the only test that showed anything (WB) could be a false positive, since there were no IgG bands and I have very high antibody titers to HHV-6 and EBV. What do you guys think??
I've been taking the Byron White herbs (A-L Complex and A-Bart) for several months with no effects whatsoever.
Also, I've been taking Doxycycline for over 3 weeks now and haven't noticed any changes. Well, I did start to feel a lot worse several days ago, but I'm not sure if those could even be symptoms of a herx:
It's exactly how I felt 7 years ago when this all first started. These are the worst symptoms, I haven't felt them in years and couldn't imagine that I would ever again.
So maybe I 'just' have CFS. As much as I kind of hoped that Lyme was the answer. I have an appointment with my doctor in a few hours- not sure if he will want to continue with antibiotics or not. I can post an update afterwards.
All the best.
Karina
PS: I also got my CD57 results: 67 (reference interval 60 - 360).
Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
posted
oh, just noticed you had those bands on the WB. That is weird... From what I've read the advanced lab test is accurate. Maybe you have beaten lyme, but have coinfections?!
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
| IP: Logged |
Either the Western Blot gave a false positive, or the Borrelia culture gave a false negative...
Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
posted
Mold is a neurotoxin and can present itself the same way that Lyme does if you are susceptible. Mycoplasmas can cause a lot of symptoms too.
That is really weird with your tests, everything we all thought to be true isn't always Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
You may have other infections, but Borrelia may not be one of them.
Those symptoms are coming from something and chronic infections are a likely source.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Update: saw my doctor and apparently they made a mistake - the Advanced Labs culture results are *not* ready yet. So it might come back positive still. Sorry for the confusion.
RC1, thanks, I haven't looked into the mold issue yet... but I've tested negative for mycoplasma in the past.
Dekrator48, yeah, there seem to be some chronic infections going on... just have to pinpoint what they are...
Lymetoo, exactly, who knows if the Advanced Labs test has been properly validated. Thanks for the link.
I'll update as soon as I get the final results of the test. Thanks for your comments!
Karina
Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Don't forget the other bosom buddies: - Parasites - Mold - Heavy metal toxicity - Deficiencies - Detox inabilities (MTHFR, KPU, etc.)
Unfortunately, you CANNOT overlook ANY of these when still ill with this dreaded illness.
I see you are new to posting, so my guess is that the above issues may not even "register" with you. Trust me, after 16+ years of dealing with this mess, you need to look at ALL of the above. Do searches here on lymenet. You've come to a good place for help, support and advice.
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
posted
Thanks, Tammy. I've done tests for parasites, various nutrient deficiencies and methylation problems. Next will be mold and heavy metals I guess. Thanks for the advice. I'm grateful to be part of this community.
Karina
Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Hopefully you weren't on abx during the time of your test.. or just before.. This test requires you be off for 2 months prior(if memory serves correct).
posted
Thanks. I did take penicillin in December but finished exactly 2 months before getting this test. And then I started Doxy over a month after the test so I hope that's fine.
Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
The 23 & 39 bands ARE Lyme specific (only exposure to B.B. will cause this... atleast as we currently understand the disease now) so it may very well be that you have Lyme involved here.
IF your Lyme infection is pretty recent- within a couple months or so, as is hinted at by the + IgM results but no + IgG bands, AND since you apparently didn't "herx" a day or 2 into the doxycycline regiment... If you Have Lyme, it should be controllable with only 6 or 8 weeks of antibiotic therapy.
I didn't read your original post so I don't know what your clinical picture (symptom history) is, but the high titers to HHV6 & EBV seem to indicate that That may be something you need to pursue.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I just want to point out that it is possible to have lyme disease and it not show up on the new culture test. That is true of any culture test.
You have to have lyme in the blood sample that you send to the lab for lyme to grow in the culture test.
If there is no lyme in the particular blood sample sent to the lab, then lyme will not grow in the culture, but the person could still have lyme disease.
"As with all blood cultures, may need several sets to be sure
Any positive test is significant, even if it is the only positive out of a set of three
We have found that the success of culturing Borrelia can be increased by following these simple recommendations:
The patient should not have been exposed to any antibiotics, even those not known to affect this organism, for a minimum of four weeks prior to the blood sample being drawn.
Borrelia are more likely to be recovered from patients who are symptomatic at the time of blood sampling.
A higher yield may be seen if the blood is drawn in the early afternoon, when most infected patients feel especially ill."
So, they are recommending 3 tries at the test if negative. And, they are giving you advice on how to get a better chance at a positive if you have lyme.
What's good about the culture test is that if it grows lyme, nobody can dispute that you have lyme. No such thing as a false positive, in other words. And, we know how the other side has stressed false positives to everyone using the Western Blot.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
---"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." -- Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96109 | From Texas | Registered: Feb 2001
| IP: Logged |
quote:Originally posted by vitamink: Update: saw my doctor and apparently they made a mistake - the Advanced Labs culture results are *not* ready yet. So it might come back positive still. Sorry for the confusion.
-
Keep us posted!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96109 | From Texas | Registered: Feb 2001
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
What day did the lab receive your sample?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
have you been checked for Brucellosis??
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
posted
So I guess I could still have Lyme even if the culture comes back negative (which it hasn't yet).. hmm. It'd be nice if I could repeat the test several times (as TF mentioned), but it costs $595 and I'd still have to wait several months to get results each time.
Susank, The lab received my sample on February 9th!
Nonna05, Nope, I haven't. Something else to investigate in the future I guess.
Thanks for all your comments btw. My doctor wants me to take Doxy anyway (and maybe add in Plaquenil) for the FL1953 bug. Honestly, I'm not convinced about the relationship of the FL1953 to my condition (or CFS in general) - there really isn't enough evidence yet.
Nevertheless, it's clear that I have some chronic infection(s) going on, and there don't seem to be too many options for me at this point, so I'm gonna stick with the Doxy and maybe add Plaquenil and see what happens.
And if the Lyme culture comes back positive, well.. that'd be a relief I guess.
Karina
Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
My understanding of the new culture test at Advanced Labs is that it has about 80% sensitivity and 100% specificity. That means that 20% of their negatives are false negatives, but they have no false positives.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
posted
hmm, does the lab have those percentages on their website? or where did they come from?
i guess false negatives are possible with culture tests, but... it's hard to work with a theory that isn't falsifiable. ^^
Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
quote:Originally posted by vitamink: hmm, does the lab have those percentages on their website? or where did they come from?
i guess false negatives are possible with culture tests, but... it's hard to work with a theory that isn't falsifiable. ^^
I will try to locate the source of those figures.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
posted
I dont know if saying this will get me shot down....
But i really believe that it is very reasonable to assume that there is never a case of ONLY CFS or ONLY fibro,
I think that with each case there has been a precipitating event
These could be a new infection from a pathogen,
Or the immune system becoming overwhelmed as the total load of infection or toxicity reaches some critical point.
Or the body's response to some unknown new substance or environmental factor,
or some random mutated gene in your body causing issues suddenly
or whether a number of different factors all converged at once to cause the symptoms
It is just so sad to me that modern medicine seems to give this point of view no credence, and instead is focused on prescibing and selling as many expensive bandaids to each of us as possible
-------------------- IgM ++41, IND 31, 34, 39, 83-93 IgG IND 41
"To the world you may be one person, but to one person you may be the world." - unknown Posts: 72 | From NC | Registered: Sep 2011
| IP: Logged |
posted
paulieinct, thanks, it'd be cool to have that reference.
WheelWatcher, i totally agree. i guess the problem is, once cfs has been triggered, removing the original source (infection, toxin, etc) might not be enough the reverse the cascade of malfunctions that has already occurred.
i feel like a successful approach would involve trying to "undo" the damage layer by layer, and of course removing the initial factor (if it is still present). modern medicine usually doesn't take this approach :-/
there is a theory of cfs that i find really elegant- the glutathione depletion/ methylation cycle block hypothesis. according to this theory, a variety of factors gradually lowers glutathione levels until a 'precipitating event' occurs (as you mentioned) and knocks the levels past the 'critical point'.
at this point, there becomes a block in the methylation cycle and a vicious cycles ensues, causing malfunctions in the immune system, nervous system, endocrine system, etc.
so the idea is to raise the methylation block, restore glutathione levels, and deal with secondary damage (e.g. infections, metals, nutrient deficiencies) all at the same time. i guess that's the approach i'm taking. it might not be effective in the end, but i am a sucker for elegant theories. Posts: 34 | From NYC | Registered: Mar 2012
| IP: Logged |
posted
I sent an email to Advanced Labs, and they responded with a pdf file which says that their sensitivity is 80+%.
I cannot figure out how to link to the pdf document here. If someone can pm me with an email address, I can forward the email to you. -Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[confused]](graemlins/confused.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic