posted
does anyone know how long it would take to receive the results for a negative lyme titre? First I was told it would take at least one week, then I was called three days after taking the test and was told it was negative.
Posts: 2 | From mass | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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A titre test usually means ELISA.
From your question, it sounds like you are asking if they just didn't do the test right because the time was shortened.
I do not know how long they take but such tests are usually worthless.
Any doctor who knows anything about lyme would not waste their time but go straight to a Western Blot IgG and IgM, but from very specific labs. Not all labs do this correctly.
If you have reason to wonder if you have lyme - or any of the co-infections - it is best to see a specialist.
Q: Did you ever/ do you now have a bulls eye rash?
(not everyone gets a rash and rashes are not all bulls eyes, but if you have a bulls eye rash - take photos - that would be lyme. No need for further lyme test.)
Q: Have you a recent tick attachment?
Please go to the NEWBIE links at the top of the medical forum menu.
BettyG's set is a welcome set.
TreePatrol's set is filled with links.
Sorry you have come here, but welcome. We hope we can be of some help. I know this will me more information than you expected, and it is, indeed, graduate level learning.
So, get a snack and a cool glass of water. Put on some good music. I hope you enjoy learning as there's a lot ahead.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
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:
" . . .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 - ( It is very important to read the entire article for many of the replies you get will be based upon your having that information.)
===================== =====================
AFTER reading the Savely article (link above) this will make more sense
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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sorry you happened to be my mental exercise for the day - one last post and I relinquish this thread. I do mostly pasting of the academic stuff and others will come along with personal experiences.
While you have the weekend to figure this out - and then make some calls on Monday - the best self-care in very important. A few of the most important things as you find your way to an evaluation by an LLMD:
* know that alcohol is very bad for anyone who has lyme
* steroids can make any infection blossom. Unless you are on a steroid inhaler, or currently on steroids, AVOID THEM in all forms.
Do not change anything this minute, but a LLMD should be consulted soon for instructions. If a life-threatening emergency, antibiotics (abx, from here on out) - and the correct kind - should also be given with any steroids. Again, the LLMDs are the ones who know about this.
* don't let any doctor talk you into a lumbar puncture (spinal tap). they are not very reliable for lyme testing and can have painful side-effects for days after the test.
* Resting when you feel the need is vital; so, too, is gentle exercise, but experts advise to hold off on aerobic exercise at first. Did I mention that excellent self-care now is very important?
* Now, you can roll your eyes, laugh, take a walk or go to a funny movie. This is a lot.
Try to still have a life and keep some sort of balance and as much healthful enjoyment as you can handle.
Hopefully, you will find an easy solution. However - by educating yourself and consulting an LLMD - you can be assured of one that is likely to be the right one for the right condition.
who follows the ILADS (rather than the IDSA) guidelines.
Such a doc will know that over 75% of Lyme patients will have
negative titers and that your treatment, at least in this stage
of the game, should be much more aggressive than what
you will almost certainly get from your doc (should be 400
mg/day
of doxycycline for at least 2-3 months.)
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, adamm is correct.
Even if you were to have a positive test, some might say it's a false positive.
And many doctors will just give you a very short course of one prescription. Short courses - or MONO-THERAPY - neither is advised by LLMD's for any TBD. Combination, rotation is the norm.
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! *************************************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Example:
PLEASE show your positive, +/-, and IND numbers from both western blot IGG AND IGM blood tests; do it this way please!
IGM ... do same thing for IGG below IGM *******************************************
18 + 41 +/- 78 IND
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! -----------------------------------------------------------------------------------
also, please see below, TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
posted
We got the results back as negative within 60 hours of it being taken.
But the titer test was useless for us.
A few days later, there were splotches and rashes all over the body. The doctor said it was obvious that the lyme was diffused throughout the body.
Posts: 43 | From RI | Registered: Aug 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
The ELISA is the worst test you can have done for Lyme. It is notorious for coming back negative, even in people who's Western Blots light up like a Christmas tree.
-------------------- 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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posted
When I had a live tick removed from my belly recently they told me it would take 3-4 weeks for the antibodies to show up in my blood. They just started me on 100 Doxy 2 times a day for 10 days.
Posts: 365 | From Sylvania | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Oh, JR -
I am very glad they knew the test would not show right away and glad you got meds right away.
Some people are very lucky and seem to get away with 10 day's of antibiotics. However, there are many potential problems with this.
MONO-TREATMENT is never advised for lyme. The cyst form must be addressed - and other forms/cycles as well.
CO-INFECTIONS must be assessed.
Please read through all the posts above - for your safety.
BTW, while tick testing is not always accurate, were you able to save the tick and get it tested for all tick-borne infections?
I assume you did not get a bulls eye rash. If you did, you clearly need to see a LLMD ASAP.
posted
Keebler-no they did not test it. They had to cut it out-so it came out in pieces. They had to numb my stomach it was so deep. They just threw it in the trash can.
A friend of mine went to his doctor with an attached tick and they gave him one dose of doxy.
I got the ten days because there was such a severe local reaction to the tick bite. It hurt and seemed to be infected, but they said it did not mean I had lyme, it just was a local reaction.
I felt sick to my stomach when I had to take the doxy, so I was glad when it was done.
Posts: 365 | From Sylvania | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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If you had a rash at the site of the bite, it is highly likely that the tick had borrelia - and possibly coinfections.
If the tick was infected, 10 days' treatment with one drug is a big chance.
I know the doxy is hard to take. There are other alternative Rx and most are not a walk in the park. However, lyme disease is a walk in hell.
You may be a lucky one but, still, I do hope you can get a good evaluation by a LLMD who has treated thousands of patients.
Knowledge is power and if this returns, it could be much harder to treat. Rather than months, it could be years out of your life.
Good luck.
==
P.S. JR - I got your PM. thanks. Glad to hear you are aware.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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