posted
I've had bloodwork for lyme done 3 times, on average, every month. Elisa, then western, and the last one I am not sure.
I am wondering what makes my doc (non-LL) think that I've had lyme for "a while". Is it possible to estimate from the below ## for how long I've had L?
Sept (Elisa): Lyme IgG/IgM AM 6.78 Lyme disease AB 1.51
Oct (western): 7.08 and 1.32
Nov (?): 6.68 and 1.61
I can trace some of my symptoms (anxiety and difficulty swallowing) as far back as 4 years ago, but those seem non-specific. I am generally a type A person, so, anxiety could be Lyme-non-related. Memory problems, flashes, confusion, etc are more recent (~6 months)
Thank you in advance!
Posts: 59 | From CA | Registered: Dec 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Huh...type "A" huh?
I considered myself a type "A+" myself...
run cycle and ski?... or does the ex mean something? Extreme or something like that?
I do not understand the third test palsey... But if you have had three ELISA and westernblot positive tests...
Then you probably have an active infection.... It's only a matter of time and perhaps some unknown catalyst that will launch you into full blown symptoms...
Then you'll go from type "A" to "4F" REAL FAST!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
It can be very hard sometimes to tell how long you have been sick, through blood work alone. Some of the sickest people will test negative for various reasons.
Many people figure out how long they have been sick by tracing symptoms they have had back to when they started.
As far as symptoms such as anxiety, yes that one can be hard to tell if it's lyme related or type A. I think it's a matter of degree, my anxiety was very bad. I also knew my anxiety was related to Lyme/Babesia when those symptoms when away with medication.
This is just my own personal experience, as a lyme patient.
Posts: 6641 | From Michigan | Registered: Jun 2001
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Michelle M
Frequent Contributor (1K+ posts)
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posted
These seem to be "titers" rather than readings of specific bands such as are found on a western blot.
I don't think there's any way to tell from this how long you've been lymed.
On a western blot from a lab that shows ALL bands (since most labs don't test all the bands), certain bands are known to appear in late stage lyme, such as band 31.
However, if you've got a positive test, then you probably don't need to spend the money on further testing.
But you SHOULD definitely find an LLMD and be tested for co-infections.. 'specially cause here in sunny California we have babesia WA-1, which is NOT fun.
See IGeneX.com or have your doctor call for recommended testing panels.
Are you currently treating?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thank you for the responses. I am trying to set up an appointment with Dr H in CA.
I have only recieved 2 weeks of doxy, and then 2 weeks of amoxy one month later. From what I've read in this group, it's not enough. My non-LL doc says let's keep watching if your symptoms get worse in 2 months. I certainly don't want to wait 2 more months if I've got full-blown Lyme.
And I certainly don't want to go down to type F. I am a scientist (kinda need to keep my brains), and I used to be a good distance runner, an OK cyclist (~cat 3), and an elite cross-country ski racer (XC==crosscountry). Can't run anymore, can barely ski. Cycling is still OK.
Posts: 59 | From CA | Registered: Dec 2006
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Lymetoo - one of the tests they did was a Western. Do I need to get a picture of the actual blot from them? Or are the numbers enough?
Ironically, I do westerns at work. I hope whoever did the western knows what he/she was doing.
Posts: 59 | From CA | Registered: Dec 2006
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quote:Originally posted by runcyclexcski: Oct (western): 7.08 and 1.32
I've never seen Western Blot results like the above. Where are the bands?????
REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR 1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochetes are deep in host tissue 5. Only blebs in body fluid; no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10.Utilization of host protease instead of microbial protease 11.Spirochete in dormancy phase 12.Recent antibiotic treatment 13.Recent anti-inflammatory treatment 14.Concomitant infection with babesia may cause immunosuppression 15.Other causes of immunosuppression 16.Lab with poor technical capability for Lyme disease 17.Lab tests not standardized for late stage disease 18.Lab tests labeled "for investigational use only" 19.CDC criteria is epidemiological, not a diagnostic criteria
You're right....alot depends upon the lab technician as well. Igenex knows what they are doing and they test for ALL the bands.
Read all the way down on the "Western Blot" link: http://tinyurl.com/ffn3x . Michelle has some additional information you need to see.
You're on the right track!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: Igenex knows what they are doing and they test for ALL the bands.
I guess if i ask if my HMO will pay for the right test, the answer will be "good luck". They will be happier paying for 3 cheap tests done wrong than for one expensive test done right (and probably costing less than the 3 cheap ones combined).
Posts: 59 | From CA | Registered: Dec 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there runcyclguy...
Pay for it yourself if you have to....
But I don't understand...you're positive...right!?
The only problem is you have a duck....treating you... Recent IDSA guidelines (if your duck follows them)will lead you down the wrong path...
One strewn with continuing and worsening symptoms and failings of your mind and body till you eventually either commit suicide or die or well....that's enough!
NO I'M not Kidding....
If you're indeed a man of science...then you know certain labs don't have the methodology necessary to do the correct tests...but claim they do anyway...cuz HMO's are cheap!
six months of orals doxy and ammoxy did'nt get rid of mine...
A types are always getting this disease cuz we're more prone to be outside actively enjoying our lives...
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Being active and being outdoors does not make you invisible. Somehow I forgot that. I think I will only hike in deserts from now on.
Here are the bands that were found in my western. I don't like + and - kind of interpretations, but here they are:
P93, P66, P58, P41, P39, P30, P28, P18 AB PRESENT
based on these results, can a LLMD estimate how advanced my Lyme is, and whether I need that serious kind of treatment that many folks in this group go through (i.e. 14 meds on average and $4,500 average monthly cost - sounds like chemo)?
I can trace some symptoms of lyme at least 2 years back, perhaps, 4 years. After reading this forum I am wondering how come I still can work - not as productively though - and exercise. which makes me hope that perhaps the lyme is not very advanced (or, responsiveness may be different from person to person).
Posts: 59 | From CA | Registered: Dec 2006
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posted
... my 1st appntmnt with an LLMD is in 10 days.
Posts: 59 | From CA | Registered: Dec 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by runcyclexcski: Here are the bands that were found in my western. I don't like + and - kind of interpretations, but here they are:
P93, P66, P58, P41, P39, P30, P28, P18 AB PRESENT
based on these results, can a LLMD estimate how advanced my Lyme is, and whether I need that serious kind of treatment that many folks in this group go through (i.e. 14 meds on average and $4,500 average monthly cost - sounds like chemo)?
Hi RunCycle.
Dr. C believes these are the specific bands for lyme: 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
I bolded the ones YOU are positive for.
So you have 6 positive specific bands, even with a crappy lab!
Whatever lab you used doesn't bother testing the bands that tend to show up in late-stage lyme, which are the 34 and especially the 31 band. They "omit" testing on those bands because they pretend they believe you might've had the vaccine and might therefore get a "false positive," even though clearly just asking you ought to rule that out.
One needn't spend a bazillion dollars necessarily and many people get better on orals alone. You may be lucky and not have any co-infections to deal with and have nowhere to go but up! I sure hope so.
The best way to know for sure is to get thoroughly tested by your LLMD, get in treatment, and keep a positive attitude since treatment is notoriously rough going for a while for most.
And hopefully, you'll kick its butt soon!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymie tony z
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posted
hey run,
It is not necessary to be on 14 different drugs...
four or five supps and one iv and perhaps one cystbuster...
should reap results...it is not chemo...
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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david1097
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posted
xski...
An interesting observation that has been made is that if the IgM but not the IgG is elevated even after a long time of symptoms have been present, then you likely have had the infection for a while. There is an IgG response but it gets attentuated in some people after a while.
Lots of ideas as to why but nobody knows for sure. This runs counter to "normal" humoral response where IgG shuld remain persistent and IgM should fade out. The bacterial has an ability to change it its out protiens and I suspect that after a large number of growth cycles, it gets forced into a route where the variants of the bug that are least visibile to the acquired antibodies becomes the one that survives. All the others get eliminted, sort of like the problem with antibiotic resistance but only with human antibodies.
So you might ask, what about the inate response from the things like NK cells?. There is a study that is ongoing now that is trying to determine the effect that lyme has on the NK cells, CD-57 in particular. CD-57 levels have been observed as being quite low in many people with late stage Lyme. The bug is somehow able deplete or kill those cells during active infection. CD-57 may be related to some complex that can in fact kill the bacteria and is being depleted in the process but that is only my guess.
By some accounts, the IgM response follows an odd cyclical pattern that peaks every few weeks, I am guessing that this may be due to the fact that the IgG is not doing its job and the bacteria displays slightly different surface protiens on each growth iteration, this triggereing a new acute response.
Another observation that virtually all classical lyme patients exhibit is a cyclical pattern that occurs every 4 weeks or so. (I am sure that some will say this does not occur for everyone,true.. but I am speaking for the majority of confirmed cases with a classical lyme infection with joint, rash and other symtoms.) If you have had the infection for a while, the cycles eventually merge into one continuos bad stretch and the cycles may no longer be visible.
Try to think back and remember if you had a remitting and relapsing course and when this may have started. Unless you know to think in these terms it can take a long time to figure it out, if at all.
Finally a note on lyme syndrome - a name that I made up....Many people have Lyme + something else. The interaction between the two or three infections can be very bizarre and account for all sorts of weird symtoms. It seems that other infections that are usually asymtomatic and/or can be cleared up quickly with some antibiotics can become refractory to treatment when Lyme is put in the mix, perhaps because of the effect of the lyme (and its antigenic variation) on the immune response.
In either case if Lyme is positive (as it appears on your case based on the WB) and the symtoms deviate from "classical" then you may also be infected with other bacteria or viruses. Unfortunately, this worsens the prognosis and often results in the need for mutliple simultaneous adminsitration of differnt drugs. I think many people on lymenet are in this category.
On the chemo comment...you got it right, treatment for lyme is via chemotherapy means.. Anything chemical for treatment is chemotherapy. If you pick up a book on pharmacology, there will usually be a a few sections called "chemotherapeutic treatment of bacterial infections", AKA antibiotic treatment...usaully 3+ chapters....
On the neuro problems... You haven't been breathing any of the dust from the acrylimide powder during your western blot gel preparations have you????? (this is meant to be a joke by the way..)
I have committed enough lymenet heresy for now and I am sure some will be looking to burn me at the stake so I will stop now.
Posts: 1184 | From north america | Registered: Feb 2003
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quote:Originally posted by david1097: Another observation that virtually all classical lyme patients exhibit is a cyclical pattern that occurs every 4 weeks or so. If you have had the infection for a while, the cycles eventually merge into one continuos bad stretch and the cycles may no longer be visible.
david1097 - thank you for the message. I haven't noticed any periodicity in my symptoms. I've only had 2 instances of long low-grade fevers separated by 1 year. Perhaps, if I had compulsively measured my body temp every day for a year I woud've captured the cycles.
Can't say anything about a continous bad stretch either.
The absence of periodicity could be due to me being on and off antibioitcs for other reasons (pneumo, asthma, sinusitis) for a year by now. E.g. there is a theory that asthma is an ifectious disease, and I've been taking azythromycin for 3 months for the asthma. Did not do anything for the asthma, but could've slowed down the lyme.
Since there seems to be so many people fighting chronic Lyme hard (judging from this forum), I wonder if there are statistical data on the rate of recovery, percentage of people developing complications, etc. Granted, only those who are feeling bad are much more likely to post.
Posts: 59 | From CA | Registered: Dec 2006
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posted
cycle guy, you are postive. run to a llmd and get started on treatment.
my first symptom was a tingling/pain in 2 toes left foot- especially with hiking/lifting weights. thought it was improper fitting shoes, or just "geting older" neuropathy. I can trace that back about 6 years.
got a horrible pneumonia 1-04. 2 rounds oral antibiotics. got somewhat better. toally lost sense of smell and taste, noticed an extremely foul pungent aroma left nostril only. any extreme physical activity increased the intensty of the smell. had overwhelming fatigue-had to talk myself into getting up and going to the bathrooom. i've got a multitude of other symptoms now.
igenex is the lab i used. they are great. very professional. my band 31 was +++ and 34 was ++. cd57 was60(now it's 25). i have been terribly sick for 3 yrs, but looking ack i've had symptoms for 6-7 yrs.
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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