posted
I have tested positive on Elisa and WB for lyme. I went to internal med dr and he has requested the test at Igenex and a battery of others by another lab.. today for a second opinion and wishes of family, I saw an ID..he is not impressed with either lab and wants to do a spinal tap. I need help.I have had so much blood drawn, test done..I am 70 years..female..and so terribly confused. This controversy is awful. Anyone have any reviews about the various labs. Another question...anyone try Chinese herbs?
-------------------- Rosann Posts: 5 | From Texas | Registered: Feb 2009
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bettyg
Unregistered
posted
welcome rosann!
DON'T SEE ANY INFECTIOUS DISEASE DRS! *************************************
DONT LET THEM DO A SPINAL TAP ON YOU!! ****************************************
please break up your post into short paragraphs for us neuro lyme folks who can NOT read or comprehend what you typed ok. instructions below; see my guidelines...
after you have broken it up here; copy your broken up version and post in SEEKING DR. forum, and use subject:
TEXAS LLMD NEEDED!
go to lower left hand corner and mark box to receive all replies to your post.
/////////////
to us, IGENEX IS NO. 1 LYME DIAGNOSTIC LAB in USA! see my newbie package below; and read all about igenex in there, and the other top 3 in USA exclusing mayo clinic, etc!
best: IGENEX IN CALIF., MD LABS IN NJ, FRY LABS IN ARIZONA, & CENTRAL FLORIDA,
when you get your igenex western blot igm/igg blood test back in 3-4 weeks, post only your POSITIVE/INDETERMINED nos. here, and you can see what is said what the numbers mean ok.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks! *************** 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 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.
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. 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. ------------------------------------------------------
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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posted
Rosann, with a positive test on Elisa and WB, you clearly need to get to an LLMD. Just follow Betty's instructions to find one.
My ID doctor diagnosed me strictly on history. With positive blood tests for Lyme, you don't need a spinal tap.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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posted
Thanks all for supportive answers. I will not take tap. I have told all 3 dr's that all will have test. Probably wrong strategy. Plan on antibiotics and homeopathy. Anyone heard of supplement Silver Shields? Anyone comment on ringing(bad( in ears? Anyone have continuous burning of feet?
Thanks for patience. Am new w/o large support system except we are sorry about the situation.I understand..they just do not know.
-------------------- Rosann Posts: 5 | From Texas | Registered: Feb 2009
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bettyg
Unregistered
posted
hi rosann,
check your profile for a good TEXAS LLMD !!
quoting you...
Plan on antibiotics and homeopathy....GOOD
Anyone heard of supplement Silver Shields? never heard of!
Anyone comment on ringing(bad( in ears? YES, we all get this and some have it 24/7. keebler will be along and will give you some of her EAR LINKS to read w/good info ok!
Anyone have continuous burning of feet? yes, many do; there are some recent posts about this too.
anytime you want to learn something during this late/am hours, use SEARCH AT TOP.
click on it, type in burning feet medical subject any date leave membership no. blank; hit send
read all posts/replies; most current are at top. if none, use BACK button and show text vs. subject; leave everything else as is, and click search. good luck.
WE'RE YOUR NEW LYME FAMILY walking in yoru shoes sharing our experiences, stories, support, and unconditional love!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
DO NOT DO A SPINAL TAP. Don't even think, "oh, well, it couldn't hurt" because it can.
1. they can be very painful.
2. It can take weeks to recover sometimes from a migraine that is common afterward
3. Borrelia are not a sure catch with a needle. Like fish, as someone here says, if you catch a fish in a pond, you know that pond has fish. But if you don't catch a fish, you still don't know what fish may be swimming around in some other place.
As others have said, they chance of them getting a good sample is slim.
4. You already have 2 positives. You have symptoms. Find a good LLMD.
5. If you were to have a spinal tap and it came out okay, while we know that the test can't have captured everything, the ID doctors would cancel out your previous two positives.
A Western Blot is much better.
=====================
============
Ringing in the ears is common for lyme patients, and some meds, food, and over the counter products can contribute to that.
More about tinnitus - causes and solutions - at these links:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
========
Pardon if some of these links are repeats - and sorry for so much. I want to be sure you have everything you need to make a decision. I suggest getting the film listed near the end and sharing that with your family.
I echo others' comment: an ID doctor will not treat you. Oh, once in a while there is very rare one who actually knows all about lyme and other tick-borne infections, but it is very rare.
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.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
=============================
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.
(I don't think you need more tests for lyme, but if you need to refer to this for co-infections, it's right here.)
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:
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
- 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.
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%).
An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity.
like the others say a Spinal Tap should be avoided. I had one and experienced bad headaches immediately/neck pain and a flare in my Lyme. Taps can be dangerous and require a skilled technician, don't put yourself in harms way, GO FOR TREATMENT, your HERX'S will be all the proof you need.
Avery Lyme half my life: Misdiagnosed Fibromyalgia
-------------------- Blue Skies Posts: 11 | From Hudson NY | Registered: Feb 2009
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