posted
I posted this before but I was informed that I wasn't using the "subject line" properly for people to answer or look at my posts, so I'm trying again.
I was a part of other message boards, (mostly pregnancy ones because I was preggo at the time), so pardon me, I'm not used to some of the rules or requests on how to post here.
The subject lines, double spacing, no long paragraphs, etc. I'm still adjusting, so please give me time. I love to write and have all of my life, I'm long winded, so it does take time to adapt! Bare with me, please.
ANYWAYYYYYYYYY, If I get another test, I need your advice. I have a bottle of Amoxy in my medicine chest.
Should I take it before the test, if so how long? The guy on the phone that I made the other post about made a POINT in asking if I was antibiotics right now.
Can someone tell me why he was so concerned?
Would it be in my best interest to take them to maybe make something show up, if the bacteria is "hiding" or whatever or just not take any amoxy at all?
If I SHOULD take them, how much do should I take?
I need some serious advice from you guys, this is very important to me. What should I do? I'm not telling him ANYTHING about antibiotics. This is my secret.
Please advice. Thanks in advance.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
you dont want to be on abx for about 3-4 wks prior to testing. however some will say it is wise to take an abx challenge for 3 wks then stop for 3 wks then test.
it is confusing i know!!!
hang in there and dont let others get your goat too much on here k!?
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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and since THEY want it - are THEY paying for it for you!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Also, I WAS on antibiotics (just finishing them up) when I tested the first time. That's when the 2nd band showed up and made it positives. If anyone says that would make it a false positive, I won't believe, because I have too many of the LYME symptoms.
Regardless of the antibiotics, I still had band 41 show up on my first test...without any antibiotics.
I feel like the antibiotics might have (in layman's terms) broken up the bacteria enough where it could be shown on a blood test.
Agree or disagree?
I really need help on this one.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Nessa,
I'm confused. I thought you have just begin a lyme treatment plan through your doctor. But you say you have a bottle of Amox. in your medicine cabinet and want to know if you should take that.
Hmmm. what happened to the other medicines you are taking now for the protocol from your doctor? Did you stop treatment?
And, Amox. may not be the right med at the right time - the particular window matters greatly - and it's still hit or miss at this stage and tests are no longer needed.
Tincup offered to talk to you and to talk to them. That a huge benefit.
The Igenex number is on previous thread about this - they are the experts on how to do the test.
Many people offered the explanations and cautions about doing this and about supplying anymore information to the stranger on the phone.
If you decide to proceed with the test it could put your future treatment in jeopardy.
If this new test is negative (by whatever criteria they invent) your insurance may cancel any further doctor and medicine benefits for this condition.
Lyme cannot be tested along the way like other infections. The various stages and forms are very confusing. Please get the DVDs of the past ILADS seminars and conferences and you'll see why.
However, If you decide to proceed at least get expert advice on the best way to do it. I know you have asked others here about that and gotten some replies. You have a mix of experiences but we all caution that your doctor and Igenex should be consulted for specifics.
And, again, which lab will be doing the tests? You said: " . . .All lab testing is free through United Health Care . . . " Isn't that the insurance company - but which LAB?
Remember that they can cancel your treatment if the test does not meet CDC criteria - even if the test is - on its face - positive. The CDC criteria is not an accurate measure.
-----
However, If you decide, there is no hurry to do this. You already have your positive WB. You are already getting treatment.
Please read back over the replies from both previous threads.
There were some very important considerations there. At the very least, you might call your doctor's office tomorrow and discuss the benefit/risk ratio of this. Igenex will be open tomorrow as well.
I hope you can relax and have a good rest of your weekend. There will be many fires to put out along the way and it's too bad that the phone guy tossed this your way but it's his agenda - it does not have to be yours just because they want it to be.
You are under no obligation to them. You have your entire future to loose here. Please reconsider and continue with your doctor as you were doing before the phone call.
If the guy calls back, get his number and let Tincup take it from there. It's very nice that she's offered to do this. She is your advocate in this and the best one on the block.
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[ 06. July 2008, 12:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Regardless of the CDC's reporting criteria, please remember that Lyme is primarily a 'clinical diagnosis' meaning that if you have the symptoms, your doctor should be able to declare that you have Lyme and start/continue treating you based on symptoms alone. The fact that you have also had a positive test at least once should make it pretty clear to a Lyme literate doctor that you're fighting that disease.
I wouldn't stress too highly about the CDC reporting , it sounds like it's causing you some stress and really it's probably not going to make a huge difference in your care. I know it's important to make every case reportable, and I read your other post (and I'm very sorry to hear about all the 'off the record/on the record' stuff the guy said, that sounds immensely frustrating!), but really your main job right now is to get well and find a doc who will continue to treat.
Don't let stress get in the way of doing what you need to do to keep getting treatment.
-------------------- Symptom Free!!! Thank you all!!!!
posted
At first, they gave me amoxy as a precautionary (5 months AFTER THE BITE), then they called to tell me they called in Doxy for me because it was stronger.
So, the Amoxy still sits there.
I am not getting ANY treatment from any doctor. Not a primary care, not an LLMD. I'm just sitting here in pain. I don't have money for an LLMD right now.
Labcorp is where my insurance tells me/makes me go and that's where I got my CDC positive.
I think I've decided not to get the test. Do you think that I should go to Igenex and get tested? I already got my NEWEST doctor to sign off on this. I'm curious as to what pops up next if I went to Igenex, but I don't want the CDC to get involved in this.
Sorry for the redundancy. I am just lost in a nightmare and pardon my ignorance.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Nessa, please don't feel ignorant - the ignorant are the ones who don't want to learn. This is VERY complex.
I thought you were getting treatment. Sorry. I was under the impression that you had a LLMD who would have taught you all this. So, backing up:
Can you get the Singleton book: The Lyme Disease Solution . .. the Amazon link is to the left. It will explain many things.
Can you connect with your local support group for names of doctors who will take your insurance and who may, at least be lyme friendly? Best to have a LLMD, though, and some do take insurance. Ask at your group.
The doctor who "is on board" with your taking this CDC ordered test does not seem to realize that your symptoms, your past test and under-treatment do not require another test. AND he should have told you how, exactly, to prepare for the new PCR test.
Apparently, he missed that cue but, of most importance, he is letting you get snarled in the CDC reporting system which, he should know, is unnecessary and can put your treatment in jeopardy. And, in fairness to the doctor, he may be "required" to go for the CDC orders - but it leaves you hanging out to dry.
If you can get just one book for now, the Singleton one is my recommendation.
Good luck. Oh, and this is a process. Think of it as the beginning to a college semester. Much to learn but you can't just ahead to the finals until you go through the course. It takes a while to learn all this. You have to eat and sleep - and have some sort of enjoyment - along the way.
Take care, now.
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[ 06. July 2008, 01:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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After you read the Savely article, above, you now know the different stances of the IDSA and ILADS. Due to space limits and a purposeful focus on lyme itself, Savely's article did not address co-infections.
Have you been tested for the co-infections? Some of that is addressed in the ILADS' literature at www.ilads.org Every good lyme doctor should consider co-infections.
The ILADS treatment guidelines can also be downloaded at www.ilads.org
The IDSA guidelines are in flux. And, the IDSA guidelines are SUPPOSED to be voluntary. Doctors are not legally required to follow those, but do their best according to their own thought. However, that is not the reality of the situation.
The only reason the IDSA "agreed" to reconsider their guidelines is they were under the threat of further legal action against them. This was part of a settlement to prevent further action.
Otherwise, they would not be doing this. And, to see the spin they put on this with their own press release and the AP articles that followed makes it clear that the IDSA is still as cocky as ever.
I won't post those, however, and will go with the original press release from the Atty. Gen. of CT:
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.
[Report if] "Positive by any method, if a first step assay is performed, a positive or equivocal result needs to be reported only if a second step assay (immunoblot) is positive, equivocal or will not be performed."
No mention of follow-up after a positive Western blot IgM (a 2nd step test).
Any request for another follow-up test sounds suspicious to me. So is demanding to know whether you are on antibiotics. This is serious... it could impact your ability to get the care you need.
Keebler had some great advice. If at all possible I would skip the test and get to an LLMD or someone referred by local support group asap.
Posts: 621 | From US | Registered: Jun 2006
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