Doc has put me on another round of doxy. I am still positive IGM 41 & 23.
Says next week on my office visit we will discuss a spinal tap.
I'm concerned...being on abx...will a spinal tap prove active lyme and show other co-infections?
Will being on abx alter the results?
Posted by julielynne4 (Member # 20336) on :
From what I understand, a spinal tap is not a guarantee to diagnose lyme at all. It is usually NOT recommended as a means to properly diagnose lyme and coinfections.
Do you see an LLMD? Is this a primary care physician? I don't understand why he/she would consider a spinal tap. If you have positive bands and symptoms, that should be enough for treatment.
Have you been tested through Igenex labs in California? How much doxy are you on? My LLMD likes to test me once or twice a year through Igenex (but I can't afford it now so we are basing treatment on symptoms along with my original Igenex results).
How long have you been on doxy? I do not recommend a spinal tap. Sure is a lot to go through and it's no guarantee to pick up the lyme and coinfections.
Posted by liesandmorelies (Member # 15323) on :
A spinal tap is not a good test for Lyme.
I had a spinal tap done and it came back negative, not to mention the unpleasant nature of the test.
Two weeks later I was tested through IGeneX and learned I have Lyme Disease.
There is a lot of literature out there that shows it's not a good test for Lyme.
Posted by Hoosiers51 (Member # 15759) on :
Yes, I think I read that even in people that they KNOW have Lyme (via testing), the spinal tap will only show positive like 10% of the time.
So it's one of those things that it would be really cool if it came back positive, because you can rub it in the insurance company's face to show how serious your disease is...
....but it isn't a good diagnostic tool at all, so it's actually not worth the hassle, unless your doctor has some really good reason for doing it.
Posted by Keebler (Member # 12673) on :
- Will spinal tap show lyme?
Spinal Tap (Lumbar Puncture) is NOT a good test for diagnosing lyme. And, yes, the abx would affect the test. But most labs don't even know what to look for.
And there are also far better tests for the other tick-borne infections but a clinical diagnosis, symptoms, should also be a considered. A good LLMD can know how to separate out the symptoms.
Even at the very slight chance that lyme would show in the spinal fluid, the IDSA treatment guidelines are still far below adequate to treat lyme long enough.
Sounds like your doctor is wanting to follow IDSA procedure which requires a positive spinal tap in order to treat even for a short time. Maybe he's been called on the carpet by someone who oversees him. Or he just is not educated enough about lyme.
I'd decline, big time. And I'd find another doctor.
A spinal tap is very expensive (even if you don't pay). It can be very painful and you could require help for up to a couple weeks afterward if it does not go well. You would need to lie very flat for quite some time afterward to minimize headache.
Some folks get through it okay but you'd have to plan in case you might not. Seems totally unnecessary.
You're still positive on a Western Blot. Then why in the world would he want a spinal tap? Something is very wrong with that picture.
Lyme can take a very long time to treat. Doxy is usually only part of a treatment plan - just part.
Repeat testing is usually not necessary. Treat a couple months past when the symptoms subside.
It sounds like you are NOT seeing an ILADS-educated LLMD. Can you find a doctor who is better educated and with more experience?
===============
From:
ILADS Treatment Guidelines for the management of Lyme disease
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.
. . . .
-
Posted by Robin123 (Member # 9197) on :
I don't understand - if you've got a positive IgM test for those two bands, why is the doc discussing a spinal tap test?
I've heard it shows positive about 13% of the time. It's a painful procedure. A bloodtest is much less invasive.
Did you test through the IGeneX lab? They are a great testing lab. Even then, 60-70% test positive who have the disease, which is treated clinically.
Co-infections can also be tested for via bloodtests.
Am thinking you may need to find a new doctor, an LLMD - Lyme-treating medical doctor. If you want to do that, you can post in Seeking A Doctor that you're seeking one in your area.
Posted by justchugginalong (Member # 23309) on :
thanks for all imput! Yes, it is my new pcp(Int. Med.)
She knows that I first tested positive IGM in late October & did 2 weeks doxy with a two week gap before another 2 week course.
On December 16, still same symptoms just not as severe. I can walk w/o crying now.
She has put me on a month of doxy b/c she can't believe that I still have all these problems after treatment.
I don't know why she is considering spinal tap. She knows my EMG test shows nerve damage. So, she is thinking either spinal tap or sent over to infectious disease.
I'm lost with all of this. My anti-lyme neurologist says that Infectious Disease will more than likely prove that I don't have lyme.
He thinks my levels aren't high enough.
I'm just trying to get as much paid through insurance before I sell everything I own.
You all are great! Thanks!
Posted by Keebler (Member # 12673) on :
-
Posted in a similar thread by HaplyCarlessdave:
" For me, this incompetence increased my length of treatment BY AT LEAST TWO YEARS!
It ALMOST caused me to be sick the rest of my life!" (end quote)
=================
Sometimes, having no doctor is far better than having a basket full of bad ones.
Even if insurance pays for these doctors who are ignorant about the infection you have, they are getting paid for perpetuating ignorance, doing a bad job and letting you down when you need precise medical care that they are not educated enough to administer.
Even if insurance pays for your visits or a spinal tap with inferior doctors such as these, it will cost you very dearly, indeed - and in ways that you may not discover until it's just too late to treat your case as effectively as if you were being treated correctly now.
Some damage can become permanent if these infections are not handled as swiftly as possible.
If you "first tested positive IGM in late October" of course, you'd still be having symptoms now. You don't need any more lyme tests.
You need to be assessed for the full range of OTHER tick-borne infections and a have better treatment plan.
How do they plan to treat the cyst form/L-form ? The biofilm issue? Doxy won't cut any of that and it won't cover any coinfection other than ehrlichia but you'd need at least 600 mg a day for at least 6 weeks - even something else that may be newer (which a good LLMD would be up on.)
They should know that MINIMUM of 30 weeks is required to cover the spirochete life cycle compared to other infection - but even longer may be necessary.
And, how have they instructed you to protect your liver from lyme toxins and to help handle the medicines? Most LLMDs would have you taking milk thistle and perhaps also NAC.
Are you taking a good fish oil? That is vital to help decrease inflammation. Most LLMDs know that.
I would not return at all to any one of this crew. They are not working for your interests even if they are on your payroll. Settling for bad doctors puts your future at risk.
I hope you can somehow find a doctor who is well educated with lyme and other tick-borne disease. Your local lyme support group may have some good suggestions. I know there must be some good solution - please keep looking.
You might also consider exploring RIFE - but first, a full work-up would be best so you know what you are dealing with. Lyme rarely travels alone.
I hope this is not discouraging beyond words. I struggled for years with bad doctors and I cannot tell you the damage that caused. You still have a good chance if you've just recently been diagnosed. I hope you can find exactly what you need. Maybe just a few more phone calls will uncover a shining key to your success.
Good luck. -
[ 12-30-2009, 01:13 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- P.S.
Did your doctors tell you to take lots of good quality probiotics? I hope so as that can really help keep candida at bay.
Olive Leaf Extract also really helped for the times I was on abx (antibiotics).
================
I'm not sure if you got links such as to Burrascano's treatment guidelines or for some other books and articles.
It seems you may not have come across these. I'll come back with a bunch of links for your file/study. -
Posted by Keebler (Member # 12673) on :
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C May 18, 2007
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.
===========================
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:
"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.
- 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:
Book: Lyme Disease and Rife Machines by Bryan Rosner
-
Posted by Wimenin (Member # 15294) on :
NO! Been there, done that, showed nothing..but still had lyme. What did I get from that experience..a bad headache for 7 days! I also got a high csf protein level to show up which pointed me away from the neuros thoughts and towards lyme ...eventually.
Posted by txgirl09 (Member # 21612) on :
Mine did not show lyme either! I just got a very sore back for several days.
Posted by Lymetoo (Member # 743) on :
NOPE!!!
I would NOT do a spinal tap unless MY VERY LIFE WERE IN IMMEDIATE DANGER.
Posted by sutherngrl (Member # 16270) on :
I don't get why you need it. 2 positive IGM bands is CDC IGM positive. Band 23 is lyme specific.
Treat until symptoms have been gone for 3 months. No need for a spinal tap.
Posted by justchugginalong (Member # 23309) on :
Thanks to all & you all are right! I don't see what a spinal tap will prove. I have 2 positive tests to confirm lyme and that's all they need. You are right - the risks far outweigh the benefits. Thanks for your input, it really did help me decide how to handle this situation.
KEEBLER - thank you for all the information you provided. I am going through each and every one of them. I am going to call for a llmd appt. in the morning.