Daughter Reactive IGM23 and IGG66

[GypsyA]

@Jonathan Edwards:

My post was poorly worded. Again, for that I am very sorry. My wording allowed you to come to this conclusion:

Because the questioner has asked for encouragement or discouragement in administering a prescription medicine to a member of the family for whom it was not prescribed.

Anyone who knows me would laugh at such a statement. I have *never* made any decisions in my life based on encouragement or discouragement from others. I may not be as strong in mind and body as I was before becoming unwell, but I have certainly *not* lost my ability to make informed decisions on my own.

Asking for others' thoughts allows me to peek into the minds of some of the most clever people here on the forum. From what they share I can learn, or be prodded to take information and go elsewhere to learn more about something that has been shared.

Perhaps it didn't sit well that I was outwardly disclosing my own thoughts about giving/taking/receiving an unprescribed antibiotic. Anyone who truly knows about lyme understands the importance of action if it's a recent infection. I'm not ashamed to share my thoughts, even if they're considered "wrong" by many, especially when I'm trying to learn more in order to help my daughter.

You may think it's idiotic for someone without a medical degree to take action without a doctor's direction...but, there are far too few knowledgeable doctors who are actively helping many of us. This forum and others like it wouldn't exist if doctors really knew how to help us. I'm not asking for forgiveness to have lost faith in doctors--they *don't* know more than a large majority of individuals on this forum, that's for sure! I don't believe in doctors the way you are directing me to do so...I'll not leave my daughter's life (or my own) in the care of "proper medical advice" as you've suggested, until I know for certain that advice is sound.

Again, I'm very sorry, @Jonathan Edwards. I do know where you are coming from and I think it's wonderful you are keeping an eye out for protecting PR. It's a very important place for many of us, and some of the greatest minds come here to share and empower each other (Richard V was one of them). I am happy you are looking out for the welfare of this very important site.

 

[duncan]

@GypsyA , I try to get as much information as my wallet permits for my own peace of mind, but also for the clinician to allow her/him to more easily do their job and, if necessary, secure treatments.

Interspecies issues, and intracellular infections, and shifting Bb antigens, are all among possible factors that might result in potential diagnostic uncertainties. So, I always ask for the WB and C6Peptide. The CD57 is another test I sometimes request, and it is accepted more in ILADS circles; however, it is not embraced universally, and its values might be explained by other mechanisms. The C6 is FDA-approved, and I like it because that peptide does not shift, it is from the invariable region. The WB allows you to drill down into specifics, but depending on where you live and the lab your clinician uses, you may first have to test positive on the standard ELISA. You've already gotten one WB - does that mean your daughter tested positive on her ELISA?

Ideally, what one would like to do is track multiple values over a period of time. The reality is, we need actionable data ASAP.

I test for Lyme like I am attempting to build a case. It's a good approach for me. If I had to pick two tests alone, they would be the WB and the C6. If you can test the WB against more strains than just B31, all the better.

 

[GypsyA]

@GypsyA , I try to get as much information as my wallet permits for my own peace of mind, but also for the clinician to allow her/him to more easily do theirs jobs and, if necessary, secure treatments. ... Ideally, what one would like to do is track multiple values over a period of time. The reality is, we need actionable data ASAP. ... I test for Lyme like I am attempting to build a case. It's a good approach for me. If I had to pick two tests alone, they would be the WB and the C6. If you can test the WB against more strains than just B31, all the better.

Thanks, Duncan. I'm limited in the tests I can order for her myself, so I'm at the mercy of finding someone who's able/willing to see/test her. I'll definitely ask for her to be tested again (and will ask for the C6, possibly the CD57, and also check for co-infections), since I was only able to have the basics done with the WB through LabCorp. She didn't have the ELISA test, yet, either.

Her blood work came back looking okay, other than mono % being a bit high (11.4% on a 0-10% scale for normal). She came back from a month in the woods with a "flu" and a rash that looked like a lyme rash, but was raised after a day or so...and acted a bit like a blister/peeled, so we thought it probably wasn't a lyme rash after all. I had her tested, though, just to be sure. When the results came back, I realized it wasn't easy to tell if this was a new infection, or if her symptoms the past few years were from lyme all along. Doctors always refused to test her in the past, all we had were suspicions that she could also have lyme.

Thanks, again, for sharing. I really appreciate you and many others here on the forums.

 

[maryb]

I wouldn't bother with the CD57, low levels are now not considered as a marker for Lyme infection by many top LLMDs.

 

[greeneagledown]

I think some people have been a little unfair to @Jonathan Edwards in this thread. This situation is a little unique in that @GypsyA already has a prescription waiting for pickup for one medical issue (dental work) and wondered aloud if it would be reasonable to give it to another person for a completely different medical issue (lyme disease) than the one it was prescribed for. In other words, potentially someone (the daughter) was going to be using a prescription drug that she wasn't personally prescribed for a medical issue other than the medical issue the drug was originally prescribed for, and the people posting in this thread could have been at least partially complicit depending on what advice ended up being given.

That's actually very different from most of the advising that happens on this forum. There's lots of advice on taking supplements. There's advice on ordering and interpreting tests that are already commercially available without having to see a doctor, where the risk of getting the test done is minimal. And yes, there's advice on taking prescription medications, but almost always in situations where the patient doesn't have the medication yet, and is merely trying to figure out if it's worth talking to a doctor about it. For example, recently a bunch of patients have basically asked the PR forums, "Should I try Rituximab?" Those patients don't have Rituximab lying around the house and they can't buy it over-the-counter -- they're really asking, "Should I find a doctor who will talk to me about the possibility of Rituximab?" which doesn't seem legally problematic. None of these are cases where someone already has a prescription med and is asking for advice on using it for something other than what it was prescribed for, or on giving it to someone else.

So while I think most of the advice that happens on PR isn't likely to run into legal problems, this case seems different to me and I would have to side with Prof. Edwards. We should never advise someone to take a prescription medication for something that it wasn't prescribed for, or to give the med to someone else to whom it wasn't prescribed, and no one should ever ask to be advised on such a possibility, either. And if someone is hinting along those lines, the unequivocal response needs to be, "Don't do that without going to see a doctor about it." It could definitely get PR into legal trouble. Plus, in the case of a med being given by one patient to another, possible contraindications might get overlooked that a doctor would catch in-person.

I don't think the fact that the sentences discussing Doxy in the original post were declarative sentences would necessarily have shielded us from liability. I don't see a substantive difference between saying, "Should I give this drug to my daughter?" and "Wondering if I should give this drug to my daughter... [yada yada yada...] Thoughts?" And I can say with confidence that a court wouldn't see a distinction. I also don't see a difference between asking someone's opinion about a problem, on the one hand, and asking for "advice," on the other. Isn't advice just an opinion on how to tackle a problem?

If this thread had just been a question about interpreting Lyme testing without any mention of treatment, or a question about whether the daughter should go see a doctor about maybe being put on Doxy, I don't think there would have been any issues.

I felt compelled to weigh in because I have a background as an attorney and although I've never worked specifically in medical malpractice law, I can tell you that Prof. Edwards is raising a legitimate point here.

 

[greeneagledown]

I just re-read my last post and it is really hard to say "I have a background as an attorney" without sounding like an arrogant jackass...

 

[Kati]

Thank you @greeneagledown.

Personally Disagree with patients saying yes she has Lyme, which is basically making a clinical diagnosis without being doctors.

According to a few doctors in the world, Lyme diagnosis could still be present despite negative Lyme. This is an extremely contentious topic and caution needs to be exerted in advising others when it comes to clinical diagnosis, and treatment of the disease because this advice could prove very harmful.

Moreover advice regarding methylation, nutrition, cortisol/HPA axis (which isnt't what is discussed here but happens on a daily basis on this forum should be examined further.

I am sorry this thread has become off topic but this needs to be discussed with the board members of this forum.

 

[Ema]

PR is likely protected under safe harbor laws on this issue as well as the problem of defamatory posts. Forum immunity has typically been upheld in the rare cases that have actually seen the inside of a courtroom.

If you cleared out all the posts that even come close to this line, you may as well close the forum as it will be nearly empty and worthless.

Anyone with even two brain cells to rub together understands the risks involved with taking *any* advice gotten from strangers on the Internet. If you don't accept those risks, don't participate. But don't spoil it for everyone else who doesn't need a babysitter.

I'm really tired of reading these posts shaming the OP for asking a question that has been asked multiple times in other similar circumstances without any issue simply because she caught the attention of Big Brother. She did nothing wrong.

 

[msf]

Haha, this thread is like the one that Esther derailed for 10 pages - lots of abstract arguments, but no one actually answered the poster´s questions.

I am not an expert on Lyme, no one on this forum is (well, we might have a couple of lay experts), but as far as I understand it, some (mainly ILADS) doctors see band 23 as being specific, whereas others (mainly IDSA) see the number of bands as being more important - they require three bands on the IgM and five on the IgG to be positive for the test to be considered a positive one.

As to your second question, the CDC´s position on it is this: http://www.cdc.gov/lyme/faq/ (the 4th question in the diagnosis section). Some LLMDs would contest this however (as Armin Schwarzbach does in the video that was posted in the Lyme forums a while back).

Disclaimer: Lyme is a clinical diagnosis.

 

[GypsyA]

Thanks, @msf.

The CDC's position is something I have no trust in. I tested negative when first symptoms showed (and it was obviously lyme...rash, and all), so doctors refused to treat me. I took some unprescribed Doxy (no need for anyone to lecture me about how "wrong" it is to do so), but didn't know the correct dose at the time to kill off the bacteria, and finally found someone to test me again and at that point had "positive" test results (even by CDC's standards). By then, the correct dose came too late...and now I have chronic lyme (but CDC will deny this, of course, even though I was extremely healthy before the tick bite and according to them after the "correct" dose was administered I should have been free from lyme bacteria). :-(

It's interesting their response to that question begins with "Probably not." What the %*$( kind of "expert" response is that?!

Anyway, thanks for your response and making sure my questions were answered. I did actually get some helpful responses from others, also. This forum is incredibly intelligent and helpful.

Love,

Wendi

 

[msf]

Wow, that is bad doctoring even according to the CDC guidelines - it is well known that the antibodies won´t appear until the rash has subsided, which is presumably one of the reasons for Lyme being a clinical diagnosis.