posted
All a Lyme test can show is exposure. If you have exposure + symptoms, then you have Lyme Disease. If he isn't diagnosing you with Lyme Disease and you have exposure + symptoms, then I'd find another doctor.
Sorry you're feeling bad and having trouble finding a doctor. Most of us can relate.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
You'll never know how long you've had it. In a way it doesn't matter, because what's important is getting better *now*.
Though I know I'll always wonder when I was infected. It would just be interesting to know.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
It is very important to get copies of all your
tests. Many have been told neg. when in fact they
are positive. It needs to be determined by a lyme
literate MD. You can post seeking dr. in xxxx in
Seeking Dr. section of Discussions. Prayers for a
easy road to wellness.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, TipToe, no one here can tell you - for sure - if you have lyme or not (unless you had the bulls eye rash). Not all patients who get lyme get a rash and not all ticks carry lyme. But since you have symptoms so don't give up on finding out why and what you can do to get better.
I hope your doctor gave you a copy of the test. If not, call that office and arrange for a copy to be mailed to you. I assume your test was not an ELISA. You could post the bands on your Western Blot test and specify if it was IgG or IgM and what LAB did the test. That matters.
If comfortable, you could share what exactly your test reported. If it was a Western Blot, it should have some band numbers with positives or + marks.
And see more about what all that means in Dr. C's Western Blot link below.
But since you have symptoms and a suggestive test that may actually be positive (aside from the ridiculous criteria of the CDC) you do need to see a doctor who is an expert in this field of tick-borne infections.
Can you make an appointment with an LLMD?
Here are some links to explain why the controversy among doctors - why your doctor thinks you were exposed but need no treatment - and why no one can say when you were exposed.
Several of the links explain the importance of finding doctors who are more educated about lyme and all the tick-borne infections. They usually belong to a group called ILADS - or at least are ILADS-educated (that is, having read all the research from this group and keep up on new information).
This list below is intended to cover many of the bases and answer many questions. You might want to copy and paste and save as a reference as you learn more. It's a very complex subject so I hope you can find a good LLMD.
Good luck. -
[ 11-01-2009, 06:22 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
-===========
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
Be sure to read the full post at the link - it's very long and a great help. Here's part of it you might read with your test results in hand:
Excerpt:
. . . "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."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UOS wins top award at International Health Film Festival
UNDER OUR SKIN was just awarded ``Best Feature Film-Silver Award'' at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my doctor said simply "if you got bit by a tick, you've got lyme."
and so far everyone i've ever talked to that has been bitten by a tick, got lyme...
you need a llmd...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Can ticks pass the disease through sexual intercourse?
: )
Do ticks even have sex?
(sorry i'm bored)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I guess thats why the NYMPHS have all the luck.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Get appointments booked now. Most that will be worth your time and $$$ are probably booked into next year already.
Find the LLMD's now. Book appointments now, then do your homework and cancel later if needed.
Yes an LLMD will help you sort out your tests,etc,etc. That isn't the tricky part though...the tricky part is treating it which some seem to have better knowledge, luck, whatever than others.
Switching LLMD's blows, but sometimes it is necessary. It's worth it to try and get it right the first time around though.
Posts: 101 | From Living in the Now | Registered: Mar 2009
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posted
I found a friend who walked with chronic LD that walked me through the process of getting my late stage diagnosis. You have friends here that are very willing to help you through the confusion that regular MD's put us suffers thru.
Please be vigilante and ask for your tests to be faxed or sent to you. I was told i was positive ELISA which indicates exposure sure, but then my PCP told me my western blot was negative when it read equivocal with bands that a proper LLMD said, i'm positive based on my symptoms and the proteins showed up on the WB. Any band is and can be considered significant.
If DOCS were testing for HIV and 1, just 1 indicator protein came back, they would be concerned as hell. Why arent they with Lyme???
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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posted
And don't stop with just your Western Blot test as far as your collecting goes.
If you can get your hands on past blood work you might as well get a folder started. It is amazing some of the things doc's don't bother to tell you about your routine bloodwork.
Either that or they don't have the time we do to watch trends/link things together,etc.
Posts: 101 | From Living in the Now | Registered: Mar 2009
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