posted
I don't post much but I do research this site quite often for info. You guys are all great!
When I saw Dr. C in Jan. he said I should save my $$ and not worry about taking the Lyme testing. I was a text book case. Bite, bullseye, flu-like symptoms.
He put me on Doxy and sent scripts home with me for several other antibiotics.
Since my visit with him I've developed many symptoms: tingling (mostly on right side), chest pain, head pressure, pain in feet and countless others. I feel like a *&^$%^&* hypochondriac. I've never had this much stuff wrong with me and am doubting what is going on.
The ID doc I recently saw did all sorts of testng -- 12 vials of blood needed. Nothing came back and he diagnosed me with CFS and wanted to put me on Ritalin. I said NO!
He says that the lab in CA shows everyone testing positive. Is this true?
I just wish my disease would show up on jut one tests so someonw would believe me!
My kids just want to know when mom is going to feel better.
Should I spend the $$ on the testing when I go back to Dr. C in August?
Thanks so much - Michele
Posts: 124 | From Indiana | Registered: Oct 2007
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posted
Omg that sounds just like the ID I went to in Tampa....makes me want to ask you where you are from...lol.
He told me the exact same thing about Igenex and also pulled the CFS on me too.
Funny they all do the same thing.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:He says that the lab in CA shows everyone testing positive. Is this true?
I am SOOOO sick of this question and sick of doctors spreading such a lie. My IgeneX Western Blot was negative (as is many others). Mine was almost completely blank and might as well have been. All I had was a positive on 41++ IgG which basically is not helpful whatsoever. So it really angers me when doctors (who have no idea what they're talking about) say this. I WISH I would have had a positive, it would have made my life a lot easier.
Most lyme and co-infection tests are worthless, sadly. They can be so bad at picking anything up. They have been with me, but I think it's also because my immune system is so weak that it doesn't make the needed antibodies to show up on testing.
I've had lots of testing done which has done me no good sadly. The only thing I got lucky with was having Bartonella come back positive. All the other tests have come back completely negative which may or may not mean anything. Sadly, my FISH test from IgeneX was also completely negative, which was a BIG upset because it's a very costly test - $500.
This is why symptoms play a big role in diagnosing someone. Lyme disease is a multi-system illness and gives people so many different symptoms. There aren't a whole lot of other diseases that can give a person so many unrelated symptoms that actually are related... if that makes any sense.
Also, an ID doc isn't going to be of much help. You need to find a lyme literate doc who cares and understands what you're going through and will be able to help.
-------------------- 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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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Michele
If you are in the hands of a good LLMD then the tests are perty much a waist -
Many Many things can sque the results --
Igenex tests Do Not All come back positive-
Mine did Not and I Saw the Lyme bullseye rash on my leg weeks before I started getting sick -
Hundreds of people have False negatives- just from the people I know of on this site -
I have both Lyme and Babs Zero Doubt -
My tests came back clean --
Dont use the test results to decide you further treatment -
The new symptoms you are having now are Most likely a Herx reaction -
During treatment new symptoms will Pop Up and old one will Fade away --
This in Normal and to be Expected --
This Herx is a Good thing to be happening- I means that treatment is working --
Jay -
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
So, my best bet is to entrust in my LLMD (Dr. C) and stop worrying about everyone else and the fact that no tests come up positive for Lyme?
I guess I was hoping something would show up.
Thanks for the replies.
Posts: 124 | From Indiana | Registered: Oct 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Michele: I guess I was hoping something would show up.
I've prayed and hoped so hard many times that something, just something would come back positive or show up so I'd have an answer. The only thing I have ever gotten so far is the positive Bartonella...
I know how you feel, believe me. So do many here.
It's sad that such a horrible disease doesn't have better testing.
-------------------- 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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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm not sure if this is the famous Dr. C but if so, I hear you are in good hands.
There have been many discussions here about IgeneX and why their tests come out positive more often than the other labs. Please do a search to find some of those discussions.
Off the top of my head, I recall that IgeneX uses two strains instead of one and they test for more bands. They are geared to find chronic lyme whereas other labs are not.
I understand how you feel about having something in hand to prove that you have lyme disease but your response to abx is somewhat confirmatory although you could be having a reaction to the drug itself. Your LLMD would be the best judge of that.
Maybe consider getting a test though if you would feel better about it. It may change nothing but then again, perhaps you will have a positive result. I get some comfort that my tests show lyme specific bands so many times. My insurance has paid for all but one of the tests.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I disagree with most of the above on testing.
Testing should not deter a clinical Dx, but can be useful if you need insurance benefits, want to document your condition, or want some piece of mind.
A western blot should not be discouraged, just because you had a rash and symptoms. Many people do test positive and I would think that would offer you some piece of mind.
ALSO if you live in a mandatory reporting state for Lyme Disease your doctor does not have to do the paperwork to submit to the state and local health board if you do test positive as you have the other markers- rash and bite. If you are positive you should want to be counted among the already LOW Lyme counts for you state.
Igenex tests do not all come back positive as you can see above.
One of the more valuable tests may be a CD57 test by Labcorp that looks at specific killer cells that seem to be very low in people with chronic lyme disease. This is also often repeated after treatments to see if you have increases in this value.
Also diagnostic testing helps protect your doctors license- as they should be doing testing to look for signs or symptoms of not just lyme but other disease such as co-infections, iron levels, hormones, thyroid etc.
Bottom line; I would get tested for Wb, babesia, bartonolla and other co-infections. These are equal to or worse than Lyme.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Michele,
Lots of good advice here.
If you are a "classic" text book case" maybe your LLMD is trying to reduce costs when he knows he will treat you clinically based on symtoms rather than test results.
Maybe he doesnt want to confuse your situation if it comes back negative.
Igenex is a better lab. My tests were also negative with a few IND, but technically negative.
If you can afford it, and you would really feel better, get tested.
However, if it is negative, as alot of us are, you will have to have faith in your doctor's care.
I agree totally that is alot of medicine, as I have a hard time just taking a vitamin!
Just think of the abx as a temporary situation until you are better.
Good Luck and keep us posted. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
dr c in mo knows his stuff
lots of experience
he's careful with your money...some llmds test every vial twice to see which lab is better...but it is your money
appreciate him
i was neg at igenex the last time...positive the first time for bb
coinfections sometimes pos sometimes neg
some like to get a baseline test and then check it every year or so...but not every 3 months like some docs want to
if it is positive it means something
if it is negative it doesn't
if it is cdc or igenex "negative"... the results may mean it is pos to your llmd...the good ones interpret the tests themselves-because the way they are interpreted now is messed up
testing is complicated-but you do get some info from it. it depends on your finances. treatment is more important
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
..
if this is dr. c in missouri; trust in him! it's his explanation of western blot igm/igg that we use, and has details per number of protein bands!
again, it's clinical. STAY AWAY FROM INFECTIOUS DRS...our enemies!
they do NOT believe in chronic lyme;
do NOT treat for BEYOND 4 WEEKS;
and cause you to become CHRONIC LYME due to undertreatment and dosages!
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Don't be derailed in your treatment by lyme illiterate specialists and Md's. You are lucky, you know you were bitten, you had a rash, not everyone knows this! No test needed in my opinion.
Your Lyme Md sounds very smart and Lyme is a clinical diagnosis in the first place, the tests have little meaning.
I can tell you that it is not true that everyone tests positive at Igenex, this is proof of his illiteracy. I know plenty of people who tested negative and went through with Lyme treatment and got well!
Igenex simply uses all the "bands" that the CDC eliminated when they made a vaccine. The CDC test is unreliable and the ID Md should read the CDC website for himself - because they admit this plainly on their website.
Tick borne specialty labs are more accurate, but no test is 100% fool proof.
More symptoms is herxing. Old, new and increased symptoms occur when treating.
Trust your Lyme doctor - any other mainstream Md is not trained to understand Tick borne diseases, really I'd search no further and not waste any more money on mainstream ducks.
posted
I definitely would run the tests....the data is important in helping us to assess the probability of having lyme or any other disease. If it is positive, then you know. Of course, negatives don't mean you don't have lyme BUT, if you get NO lyme-specific bands, it is all the more diligent one should be in excluding other diseases or conditions.
Sadly, the tests may not give a clear picture but it can't be any less clear than not having run the test at all.
My 2 cents....
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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Peacesoul
Unregistered
posted
I was tested though Igenex at a high cost and my tests came back CDC negative but I had some lyme bands. I've been sick for 14 yr and never recall a bite or a bullseye, so I was depending on the tests and the clinical diagnosis.
The only reason I'm acceepting my lyme dx is b/c no other dr could found out what was wrong with me in the last 14 yrs of me being ill. I'm not totally convinced about the Igenex testing and clinical dx since systemic Candida has the exact same symptoms as lyme.
I would not waste my money on testing again. Save your money and see if the treatment works.
Testing is so faulty as is the treatment for lyme. No one really knows how to test or treat it correctly at this point in time. It's a hit a miss.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
This tired old excuse of "IGeneX gives everyone positives" really makes me yawn.
Roughly translated, what this means is:
"I'm too ignorant to look into this, but this is what I heard from my colleagues who don't know anything about lyme, so I believe it."
Here is what is actually true:
The New York standard is the highest in the country, and IGeneX is allowed to perform tests for people in NY. At the 2005 ILADS conference, IGeneX Lab Director 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.
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, of IGeneX 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 and is available online as part of the recording of the complete hearing at www.calchannel.com. Go to Search Archive, Browse by Month (February 2004), then to February 25th (listed as 022504), Senate Info- Hearing, Health and Human Services - Lyme Disease and hit "watch."
So, that's only a little over half of their tests that were positive. A bit of a stretch from "all."
Keep in mind these tests are not from people picked off the street. These are tests sent in primarily by lyme doctors, from people already suspected of having lyme, so there is already a high index of suspicion.
If you'd like to see some shocking figures on the woeful, pitiful and truly pathetic figures demonstrating how inaccurate other labs are at detecting lyme (i.e., the labs your other doctor used), I will be happy to post those too. Just holler!
At this point, after having treated a while, I agree with Dr. C that you may as well save your money. You may not show any antibody response, which will like cause your other docs to exclaim "Lookie there!! She doesn't even have lyme!!" When in fact your IgM response has likely just been blunted by a course of antibiotics (which is why they want you OFF antibiotics to test).
At the beginning, testing is great. Months later, not so much. Wearing an EM rash, not so much.
You're in great hands. Give the other docs the cold shoulder, except to perhaps send them a helpful article, while not holding your breath that they'll read it. Send them a link to ILADS.
Good luck!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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