posted
Yesterday I got my first positive Western Blot. I have been close many times but this time I am CDC positive. It can join my many positive Elisa's and positive PCR.
I guess it is good to have a positive. Now I am reported to the CDC as if I am a new case. Chronic for years but new case to them. They are about 30 years behind the times as far as Lyme disease is concerned so I guess my case is new to them.
Of course they will just say that I am still making antibodies to old disease. But how would they explain me and others like me, now making more antibodies and turning positive? I was not bit again.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You have excellent questions. Even in their ignorance about persistent infection, it would be hard to deny the possibility of a new bite from an infected tick.
I hestitate saying this but the CDC could still "throw out" that test. They usually only admit tests for those with documented fresh bites (so to speak).
A submitted report is not the same as an accepted report.
And a submitted or even accepted positive western blot test is not seen by any IDSA doctor of proof of infection. Sad but that's how they (don't) see it. ISDA doctors go far beyond to reject as many patients as possible.
In my case, my state would not take my positive western blot because I reported a bite and symptom onset dating back further than the acceptable time frame (of current).
Actually, the MD to whom I took the test results would not even submit them. My ND then tried and the results were rejected.
While I live far from you in one of the country's most lyme-hostile states, basically, this is the path any report takes:
Reports are submitted through each COUNTY's health detp - they may (or may not) go to the STATE health dept but, either way, only after going through your local depts, only then does the report go to the CDC.
Often, someone from the state (or your county) health dept. will follow up with a phone call, asking all kinds of questions about time-line, presence of a rash, etc. Then, they can accept or deny the test results.
If not by phone call, they may just go by questions answered on the reporting form. You may never know if your case was accepted or not, actually.
Keep in mind that the CDC REPORTING criteria may not be exactly the same as ISDA criteria to allow treatment. Even the CDC states that testing is not to be the sole criteria and that lyme is to be a CLINICAL diagnosis.
The IDSA disagrees and they can refuse treatment if their ridiculous criteria are not met.
Based upon hundreds (if not thousands) of others' experiences:
1. ISDA 3-TIER CRITERIA: Even with a postive western blot, some patients are required to ALSO have reported a NEW bite, with a current bulls eye rash AND a positive lumbar puncture (spinal tap) [which is a not a good test].
And, some allow admitance of the western blot ONLY if the ELISA was first positive.
This 3-tier requirement is written in the IDSA criteria but I just don't have the link handly.
2. The CDC may consider this one of their famously frequent "false positives" [and they are very wrong about that stance].
3. Even if they were to agree that lyme disease is active and present, some IDSA doctors would give just days' worth of treatment. Three days is all that some IDSA doctors will give, some might prescribe up to 2 weeks. A rare one, maybe But that is not likely.
Still, an IDSA doctor will offer on ONE antibiotic, at too low of a dose for too short of time
AND with just one antibiotic (usually doxycycline) this can perpetuate borellia infection by the spirochetes reverting to cyst form, which requires a different drug.
MONO Therapy (one single drug) is most often a failure - for most strains of borellia b. and certain in advanced stages where the cyst form is well established.
4. You would still not be considered a late-stage or chronic case as they still believe there is no such thing.
5. An IDSA doctor is still not going to help you with proper treatment for lyme or other tick-borne infections, either - nor the CDC, nor the NIH in any way.
As we already know, the ILADS LLMDs are still the primo experts in this field.
It's great you can "prove" to the others that you have a postive test but they will still fight you to say it means nothing.
Sadly. Because we know the truth. And we have to put our energy into finding the doctors who are the true experts.
I hope that the lyme advocacy groups can keep going strong for us so that our voices are not lost in the wind. -
[ 03-05-2013, 01:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might share your findings and experiences with any of these top lyme advocacy groups. They may be able to give voice & action to your experience.
Each has some differences or focus, but they are all fully "lyme literate" and ILADS "minded" -- bringing them all together.
- Not an exclusive or formal list. Just the top ILADS-minded organizations that came to mind. Remember STATE and LOCAL lyme support groups, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know most here know all this. However, for anyone new to lyme:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cockapoo,
I see from your posting history that you were diagnosed in 1996, several years of treatment & success . . . reinfection, etc.
I was diagnosed just a year after you, in 1997. And still, the medical field is a mine field for those doctors who are the experts and those with TBD are discounted terribly by most.
I just want to say that I hope this test does help you turn all the corners in your path. time for some change, eh?
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My doctor is so funny and optimistic. I asked if it was reportable. Maybe he was just humoring me but he told me it was. I feel like this situation will only change when more people get it. I wanted to be counted. Oh well. Thanks for the reality check Keebler.
Just for the record I don't believe I was reinfected. I had a relapse after being off abx for six years. When I went back on, the so called LLMD put me on mono-therapy and just as you pointed out, I did not get better. I switched LLMDs in 08 and next one got rid (hopefully) of Babesia but I got candida and metals and had to leave him.
I am now treating for metals, toxins, parasites and candida. Doing lots of alternative stuff that I learned on here that is slowly helping. Thanks to all you regulars on here!!
My new LLMD is behind me and guiding me with which supplements to take. Every so often he runs a Lyme test. This one came out positive. I just wonder if that is a good thing...
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
I went from negative to positive. The staff at my LLNP told me that I was reportable and that the lab always contacts the State Health dept.
I have not heard from health department.
I was bit in March 2010 went to physician but tested negative many times until on IV drugs in fall of 2012.
Posts: 120 | From MA | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cockapoo,
I hope I did not offend you as I wrote things so that anyone new to this would have it all. I know you know much of this, though, and did not know how to properly write -- it's still very hard to write and stick mostly to the journalism style basics and can't often go beyond that.
Also, I hope what I posted does not bring sadness. That is not my intent. There is the "yeah, this is ridiculous" tone in my words and the "I know it should not be this way" affection, too.
Actually, the stuff I added was mostly in validation of "yeah" not so much wanting to add to complexity of it all.
I understand fully about wanting to be counted.
I was shattered when I took tests from Igenex positive for lyme, babesia and erhlichia to my regular MD and, even with fainting lots, even in the waiting room, long ill -- she said she though it was all pychological.
She would not even take the ILADS guidelines from my hands. Tossed something else right in the trash.
You will likely not get a call from the health dept but some do. If so, just stick to the facts already reported. If on the level, they may want to know WHERE you got the tick bite, the time, etc.
Some, in places where they want to clobber the LLMDs fish for more detail about your treatment. Do not give detail, no Rx names, no dosage, no time lines and while they have the doctor's name who reported it to them, if you see a different LLMD, do not share that.
Do not make it sound like a long term thing. If asked about treatment, say something like "well, whatever my doctor thinks best" and "oh, my, the door bell is ringing."
Sometimes, they really do just want to know where the positive ticks are in the state. But, the timeline likely will keep this out of the statistics, sadly. But I do hope who ever receives it will have common sense and count it.
Still, if someone might call, be sure to make it clear to them the importance of this -- maybe things will change if we can just work from the ground up. Just don't trust them too much.
While we have no LLMD allowed in my state, there are a few LL NDs. More than once, they've been asked by the state to drop their reports of someone having tested positive. Really, the health dept. puts pressure on them to withdraw the report. Sigh. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cockapoo,
You ask: " . . . This one came out positive. I just wonder if that is a good thing... "? (end quote)
Yes. It will help valdate your treatment path. Sad, though, as I'm sure it's a kick in the gut (although if still sick you already knew the truth). But to see it on a test can be a somber moment, then one to validate.
While repeat testing is not necessary and it's really not all that helpful usually, some LLMDs are doing more of this in order to "document" all they can in justification of treatment if they are questioned.
Still, the IDSA usually says any repeat test that is positive after a negative is a "false" one. But we know better.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler. No offence at all. I know how much you want to inform and I appreciate all your info always.
I am so sad for what you went through with your doctor. I bet you felt totally alone and hopeless. I got the MS diagnosis myself. Anything but chronic Lyme is what most of us have gotten.
So don't mention that it is a long term thing? Ok. In that case, I think I like your "Oh my the door bell is ringing" if they do call.
Posts: 472 | From New Jersey | Registered: Dec 2007
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I just wanted to chime in and report that I am in your very same boat! I, too, recently just became CDC positive on my Western Blot! I've long had many positive ELISA tests, and have also had 'close call' W. Blots before, but never an official CDC positive test.? Guess that that's what tends to happen as you continue to treat these darn infections. One's immune system begins to work again, and voila- antibodies against the Bb, etc. tend to be produced/be measurable.
On another interesting note, I also returned a positive Babs test (one detecting the organism's rNA)...after years of having only an IgG titer be mildly elevated.
In some small ways, I'd say that this is a victory for individuals like us! It's nothing that we didn't already know...instead, it just brings about additional validation after so many years of silenced suffering.
Be well! Lymebulldog
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
Thanks Lymebulldog. That is interesting about your Babesia test becoming positive. Were you treating it at the time?
Babesia testing seems just as complicated as Lyme testing. Negative doesn't mean you don't have it. They do admit Babesia is in the blood supply. So they are probably working on developing better tests for it.
Posts: 472 | From New Jersey | Registered: Dec 2007
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I'm glad that you saw my message. Thanks for getting back to me, too. I treated the Babs much more aggressively earlier on. I am treating it now, but much less so. It's strange to me as well that it would show up now; especially seeing as how it felt as if I had tackled my most pressing and bothersome Babs symptoms. But, then again- knowing that it makes everything "Lyme" much worse, that could explain why my ANS issues (especially heart rhythm woes) have been so stirred up as of late.
What a crazy riddle!
And you...are you treating Babs now? What about the Lyme? Please feel free to PM me to protect your treatment/further personal details.
Thank you again for writing on this topic!
Best, Lymebulldog
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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