posted
Hi. Newly registered here on lymenet and am in need of answers. I recently had bloodwork done and discovered 2 bands that were 'reactive'. Follow-up bloodwork revealed a total of 3 bands that were 'reactive'. My pcp called an infectious disease dr who said that I am negative. 5 or more bands need to be reactive for a positive test. Any thoughts on what I should do? I do have many of the symptoms but have never seen a tick bite or rash. Thanks everyone!!!
Posts: 13 | From philadelphia, pa | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If you have your report, please post the positive bands and whether they are IgM or IgG. Three bands certaintly is suspicious for Lyme. We'll try to help more.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I thought even if you had one single band you are positive...anyone? Who do the PA people see for an LLMD? Can someone pm the info to needanswers. You need a Lyme specialist!
-------------------- If you keep doing nothing...nothing changes!
posted
Infectious Disease drs know little of nothing about Lyme testing or treatment. Sorry.
You're in PA.. huge state for Lyme!!
You can have one IMPORTANT band and be considered positive. For example, if the band is the one that contains the DNA of the Bb spirochete, then you have Lyme.
Please post which bands were positive and which lab was used.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I'm 'reactive' on bands 23 and 41. My neuro called me with the 3 band results so I don't have the third yet. I need to get a copy of that bloodwork I guess. Quest Diagnostics was the lab. Looks like I have one IGG and one IGM. Should I see a LLMD?? I'm so confused. Thanks.
Posts: 13 | From philadelphia, pa | Registered: Mar 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Band 23 is Lyme specific.
Get thee to a LLMD.
Post in Seeking a Doctor section with your state and city.
Someone will be able to help you find a LLMD closest to you.
I only had band 23 IgM via Quest as well.
That was enough for a local doc to diagnose me with Lyme.
My symptoms were many and consistent with Lyme.
I live in Louisiana where Lyme isn't even a consideration.
I had to hunt for a doc to even do a Western Blot.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Need,
I would definitely recommend that you see an LLMD. My bands were 23 and 41 by Labcorp and was considered CDC positive with those bands.
band 23 is specific for lyme. if you go to the top of this thread there is an explanation of what the bands represent.
some people never test positive and are VERY sick. an LLMD will treat based on symptoms, not test results. that diagnosis is called 'clinical diagnosis.'
if and when you see a good LLMD, they normally run other tests by Igenex, a lab that specializes in tests for tickborne diseases.
labcorp and quest are really not very good labs for detecting lyme mostly because they dont have enough bands that relate to lyme disease.
there is also a link in the front of this board, called "seeking a doctor." you can get good feedback on LLMD's in your area.
I would highly recommend seeing one if you feel you have symptoms. (also a good link at the top of this board)
GOOD LUCK! Posts: 1127 | From atlantic city, nj | Registered: May 2008
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You might want to print it out for easier reading and "digestion."
Quest doesn't even test for all possible bands, so if you were tested thru, say Igenex, then you would likely have more bands show up.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Please post symptoms too....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
See a Lyme Disease specialist. You're in trouble with those bands. E-mail me for a list of physicians and it'll help you make a good choice. [email protected]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thanks again. I'll post to try to seek out a LLMD dr. I began experiencing episodes that would last for hours - all the symptoms lead my drs (i've seen many) to diagnose an anxiety attack. They were so debilitating...I actually had to miss work. Didn't seem plausible to me to be anxiety. I've had other symptoms too over the years...it may all be coming together finally. I'll keep you all posted.
Posts: 13 | From philadelphia, pa | Registered: Mar 2009
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posted
Let me know if you need a good Philly doc - PM me if you'd like! Lynne
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Landerss, who is the physician? PM? Also if you saw the physician what did you think in terms of their quality of care?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
need,
A) ALL 'ID' docs are ducks. Atleast when it comes to Lyme. Sad but very true.
B) If you have even ONE LYME-SPECIFIC band +, many informed docs will take that as good indication to verify that any group of Lyme-type symptoms are a result of the active disease. (See explanation of Western Blots at top of Page 1 of Medical Questions flash discuss.)
C) If your doc felt the need to call an ID duck, you NEED to be evaluated by another M.D., preferrably 1 who follows ILADS guidelines for Lyme patients. (An "LLMD")
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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C) If your doc felt the need to call an ID duck, you NEED to be evaluated by another M.D., preferrably 1 who follows ILADS guidelines for Lyme patients. (An "LLMD")
That's a very good point. If the GP felt it was important enough for a specialist, then you NEED one. But you need the RIGHT one... an LLMD.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This explains WHY you need an ILADS-educated or ILADS-member LLMD.
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 the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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.
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:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
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:
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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bettyg
Unregistered
posted
copying this reply over to the proper MEDICAL board with her great suggestions...
Need Lots of Help LymeNet Contributor Member # 18603
posted 31-03-2009 09:22 PM
Need,
This post should really be in Medical. You will probably get more answers there.
Also, you have to space your paragraphs out because the folks on here with nuero lyme can not read long posts with no spaces. Look at my return post and try that. Don't worry though, I did the same thing when I first came to the group.
1. You should tell us what bands are showing up.
2. Go to the search above and type in Lyme WB and read about the bands.
3. Look at BettyG's newby package, it has some answers regarding Lyme testing.
4. Never trust a ID doctor about lyme disease!!
Another thing that would help us is if you could tell us some of your symptoms.
Thanks, Shalome Posts: 253 | From Florida | Registered: Dec 2008
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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. 
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