Daughter Reactive IGM23 and IGG66

[GypsyA]

I've shared info about my daughter here before. She's unwell (20 years old), having similar issues that I have.

The doctors always say she's fine...her blood test results are usually "okay" so they say nothing is wrong with her.

I paid to have her tested through DirectLabs/LabCorp for Lyme and she cam back with:
*Reactive IGM 23
*Reactive IGG 66

Is what I read true, that band 23 is *specific* for lyme bacteria?

If so, does IGM mean she only recently developed lyme, or only that it's active right now?

I have a prescription for Doxy waiting for me to pick up for some major dental work I'm going to have done in a month and a half from now. I have 30 days worth at 400mg. I'm wondering if it might be a precaution to have her begin taking this...if band 23 definitely means she has lyme and it means it's recent.

Any thoughts??

Love,

Wendi

*Edited to correct band: IGG on 66, not 61

 

[Jonathan Edwards]

I would strongly advise against using antibiotics for a possible infection if the diagnosis is not yet clear. It is a good way to make things much more difficult by partially treating so that the tests become impossible for a doctor to interpret. I am very unclear as to whether these Lyme antibody tests are useful but in general the most helpful aspect of antibody tests is if they change over a period. If a low level infection is partially treated that may mask things so that the tests become unhelpful. I don't think you would be doing your daughter or her doctors any favours by giving her antibiotics.

You need to get proper medical advice. Recommendations from PR on such matters are against the rules and for very good reason. If your daughter was a minor the board could well end up in court. Even with her being 20 we have a responsibility to make sure that we do not provide a channel for inappropriate medical advice.

 

[Kati]

Thank you @Jonathan Edwards for protecting patients from all kinds of advice. i very much agree with this policy and how these patient to patient advice can be harmful.

Sending my best wishes to @GypsyA and her daughter. The best option would be to take your daughter to a reputable doctor.

Moreover, no physician or pharmacist would recommend using someone else's prescription pills for another person, or worse, having a patient from this very forum sending all kinds of (prescription or non-prescription) pills to another patient.

 

[GypsyA]

@Jonathan Edwards Yes, and I fully understand and am sorry to have poorly worded my post. I definitely wasn't asking for advice, just thoughts. This forum has some of the most intelligent minds around when it comes to the health challenges many of us share. I've found it beneficial, as have others, to share what we are thinking/experiencing/etc., and hearing thoughts from others. I'm not asking for medical advice from anyone here, just their thoughts.

I know prescriptions are meant for the individual they are prescribed for, also. However, if I had known the protocol for initial lyme treatment and had access to unprescribed antibiotics when I was first bitten by a tick--when the all-knowing doctors refused to treat me because it wasn't possible for me to have lyme since I "wasn't camping for more than 5 days in a known infested area" (even with the tick rash and symptoms still visible)--I'd have taken the unprescribed antibiotic until I was able to find a doctor who'd actually help me. And, that one "wrong" move, without "proper" medical advice would have saved me and my family years of all kinds of suffering from the chronic lyme I now have. Following the rules hasn't helped many people at all when it comes to dealing with lyme bacteria. :-(

Anyway, I completely understand it's extremely ill-advised (and against forum rules) to offer advice to anyone here on the forums. I wanted to make it clear I wasn't asking for advice...just thoughts from others who have experiences and/or knowledge they'd be willing to share.

====My questions are still very important to me. I'd like to hear thoughts on them, please====

* Is what I read true, that band 23 is *specific* for lyme bacteria?

* If so, does IGM mean she only recently developed lyme, or only that it's active right now?

Love,

Wendi

 

[Ema]

Yes, band 23 is Lyme specific.

IgM typically means a recent infection but in Lyme IgM antibodies can also persist for years which makes things all very complicated.

It's more likely with a negative IgG though that it is a recent infection. But not necessarily.

If it were me, I would consider doing a more sensitive test through IgeneX to see if any other bands turn up positive or indeterminate.

My doctor advised me to take 200 mg of doxy as a "rescue" dose if I found a tick after hiking in the woods. After that, two weeks of doxy 100 mg twice a day is typically recommended for early infections.

Given that doxy is routinely prescribed for months at a time for such "serious" conditions as acne, I don't see any issue with treating if there is reasonable suspicion of Lyme. It should not interfere with further testing since antibiotic challenge is often part of Lyme testing anyway.

 

[GypsyA]

We're waiting to hear from one of the lyme literate doctors I called (no one is in until Monday), but in the meantime I don't want to just sit around wondering...timing is important if it's a recent exposure (and she did have a flu-like cold and a tick-like rash a few weeks ago after being in the woods for a month). So, thanks for your answers to my questions, @Ema.

We'll definitely get the better testing, and include testing for co-infections. We're on a waiting list for seeing a specialist who has helped others actually get better (sad that's very rare), so I'm very hopeful my daughter and I will be back here in the near future sharing what we did to heal...hoping maybe something can help others in some way. I've learned so much here on these forums.

Thanks, again!

Love,

Wendi

 

[Ema]

We're waiting to hear from one of the lyme literate doctors I called (no one is in until Monday), but in the meantime I don't want to just sit around wondering...timing is important if it's a recent exposure (and she did have a flu-like cold and a tick-like rash a few weeks ago after being in the woods for a month). So, thanks for your answers to my questions, @Ema.

We'll definitely get the better testing, and include testing for co-infections. We're on a waiting list for seeing a specialist who has helped others actually get better (sad that's very rare), so I'm very hopeful my daughter and I will be back here in the near future sharing what we did to heal...hoping maybe something can help others in some way. I've learned so much here on these forums.

Thanks, again!

Love,

Wendi

This explains the IgG/IgM problem quite nicely:

http://lymemd.blogspot.com/2014/04/the-igm-question-is-it-chronic-lyme.html?m=1

 

[GypsyA]

That's *very* helpful in understanding more about what could be going on. Thanks so much, Ema!

Love,

Wendi

 

[Jonathan Edwards]

That's *very* helpful in understanding more about what could be going on. Thanks so much, Ema!

Love,

Wendi

I am sorry Wendi, but however you word it you ARE asking for medical advice and are receiving it. I personally think we need to make it clear on PR that this sort of advice is not to be asked for and given in this way. There are serious potential issues if you give someone else antibiotics they are not prescribed in a situation where diagnosis is unclear. If you want to take that responsibility that is up to you but PR should not be a conduit for encouraging such behaviour.

 

[Valentijn]

I am sorry Wendi, but however you word it you ARE asking for medical advice and are receiving it.

No, she was asking for more information (and sources) so that she could make up her own damned mind about it.

 

[Jonathan Edwards]

No, she was asking for more information (and sources) so that she could make up her own damned mind about it.

Which is asking for medical advice in a specific person's context. She is asking for diagnostic information specifically about her daughter. Since none of us know the clinical details it is entirely inappropriate to respond. The response may sound as if it is in a general context but in view of the way the question is posed it constitutes specific diagnostic medical information unless it carries a vaceat that it cannot be taken to apply to this specific case without detailed medical knowledge.

This sort of exchange is quite clearly dangerous in my view, Valentijn, and as a board member I have to take legal responsibility for its implications. I am very unhappy about continuing to contribute to PR if it is considered that this sort of exchange is acceptable. The context is crucial.

 

[Valentijn]

Which is asking for medical advice in a specific person's context. She is asking for diagnostic information specifically about her daughter.

She was asking for information about the meaning of test bands. That information is available in research papers, and probably other sources as well. There is absolutely nothing wrong with discussing that data. What she and her adult daughter do with that information is up to them.

 

[maryb]

@Jonathan Edwards
I really think the poster was asking for advice on the Lyme specific bands her daughter was positive on. She was wondering about the abx, its a big jump to say she was asking if she should give her daughter the abx, which is what you are implying.
Having suffered for 10yrs with misdiagnosed ME, now with a positive Lyme plus co-infections diagnosis, I wish I'd known much sooner what was wrong with me. If any advice had steered me in the right direction I would have been truly grateful. This poster has already said its week-end and she can't get hold of her LLMD until Monday, we don't just tread water in these situations, we mull over things and try to think about options. If anyone contravenes rules on the forum re selling or asking for drugs then their post would be deleted. honestly can't see the problem here, other than further upsetting an already upset mother.

 

[Jonathan Edwards]

@Jonathan Edwards
I really think the poster was asking for advice on the Lyme specific bands her daughter was positive on. She was wondering about the abx, its a big jump to say she was asking if she should give her daughter the abx, which is what you are implying.

What she asked was:
"I'm wondering if it might be a precaution to have her begin taking this...if band 23 definitely means she has lyme and it means it's recent.

Any thoughts??"



That is entirely explicit. It is asking for advice on using prescription drugs without medical advice. She was asking for interpretation of the test as a basis for such treatment.

 

[duncan]

First of all, "I'm wondering...etc..." is a statement. It is not asking anything of anybody. "Any thoughts" seems to be asking for members' opinions or knowledge about this statement's topic - that does not mean necessarily advice.

Second of all, this is a Forum. Forum members post about their conditions and treatments and diagnostics all the time, and solicit input from other members. I have seen this for immune modulators and antivirals and supplements - why all the concern with this particular thread, that seems not to have crossed a line that is arguably crossed quite often?

 

[Jonathan Edwards]

First of all, "I'm wondering...etc..." is a statement. It is not asking anything of anybody. "Any thoughts" seems to be asking for members' opinions or knowledge about this statement's topic - that does not mean necessarily advice.

Second of all, this is a Forum. Forum members post about their conditions and treatments and diagnostics all the time, and solicit input from other members. I have seen this for immune modulators and antivirals and supplements - why all the concern with this particular thread, that seems not to have crossed a line that is arguably crossed quite often?

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. There are other issues but this is the main one.

As a forum PR has a Duty of Care in law. That duty falls on the organisers. Duty of Care is interpreted in terms of what is a reasonable assessment of intentions. Oblique wording makes no difference to that reasonable assessment, either in law or in real life. As someone who has practical experience of both complex ethical issues around treatment and acting as a medicolegal advisor, I am concerned that the Duty of Care for PR is not being fulfilled if we provide a conduit for this type of exchange. Perhaps more importantly, I do not think it is right for PR to provide such a conduit. You and many others may disagree, but that is my view. Similar exchanges may well have occurred many times before but that is irrelevant.

If something went badly wrong with the daughter's health because inappropriate treatment based on advice gained on PR had compromised future medical care or diagnostic testing and a member of the family claimed redress from PR I do not think that I would be able to defend PR either in principle or in practice.

We all want PR to be able to help people educate each other about ME (I am less sure about Lyme). Flexibility is fine if it is reasonable. But there are certain areas that are notoriously difficult to handle, and this is one of them.

 

[Ema]

She was asking for information about the meaning of test bands. That information is available in research papers, and probably other sources as well. There is absolutely nothing wrong with discussing that data. What she and her adult daughter do with that information is up to them.

Amen, @Valentijn, amen.

 

[duncan]

Be that as it may, the only person in this thread, up to this point, that literally advised her directly - as opposed to speaking on a theoretical level - relative to treatment appears to be Jonathan Edwards, unless I have missed something. You have to appreciate the irony in that.

Not quite sure what to make of the Lyme comment, but no foul, no harm.

Will this policy be extended to all areas of the Forum?

 

[Ema]

I am very unhappy about continuing to contribute to PR if it is considered that this sort of exchange is acceptable.

PR is a *patient* forum for the exchange of ideas, information and experiences. All are welcome but that is the main focus.

Perhaps it's better to leave these sorts of exchanges to the patients for whom the support is intended so medical professionals don't have to worry about any sort of violation of their so-called ethics.

 

[Valentijn]

Will this policy be extended to all areas of the Forum?

I doubt it. Kina is still moderation lead, as far as I know. Though maybe Dr Edwards also wishes to be a moderator?