EBV Test Interpretation- Quest Diagnostics

[barbc56]

@Gingergrrl

.

If you have to choose between a familiar but unpleasant situation and an unfamiliar situation, choose the familiar one because the unfamiliar situation may turn out to be worse

http://idioms.thefreedictionary.com/Better+the+devil+you+know+than+the+devil+you+don't+know

So if we have to choose between science, which is not perfect and alternative treatments, science based medicine more prudent and less harmful than alternative medicine.

Please understand, I am not referring to you as I just don't know that much about your situation and am not a medical professional.

Basically, I am talking about alternative and CAM treatments which may contain valid medical information mixed with medical information that is not valid.

I am also not talking about not having personal choice as I strongly believe it is important.

Take care.

Barb

 

[heapsreal]

@Gingergrrl

.

http://idioms.thefreedictionary.com/Better+the+devil+you+know+than+the+devil+you+don't+know
So if we have to choose between science, which is not perfect and alternative treatments, science based medicine more prudent and less harmful than alternative medicine.

Please understand, I am not referring to you as I just don't know that much about your situation and am not a medical professional.

Basically, I am talking about alternative and CAM treatments which may contain valid medical information mixed with medical information that is not valid.

I am also not talking about not having personal choice as I strongly believe it is important.

Take care.

Barb

So where do u place researchers such as Klimas, Montoya and Lerner, they dont come under alternative medicine. These people are experts in their fields on immunology, virology etc and work or have worked in Hospitals, universities and conducted proper medical research.

 

[Gingergrrl]

@Gingergrrl

http://idioms.thefreedictionary.com/Better+the+devil+you+know+than+the+devil+you+don't+know
So if we have to choose between science, which is not perfect and alternative treatments, science based medicine more prudent and less harmful than alternative medicine.

Please understand, I am not referring to you as I just don't know that much about your situation and am not a medical professional.

Basically, I am talking about alternative and CAM treatments which may contain valid medical information mixed with medical information that is not valid. I am also not talking about not having personal choice as I strongly believe it is important.

@Barb56 I didn't take it personally and didn't think you were directing at me at all. I just wanted to clarify what you meant was the devil we know vs. don't know in re: to CFS? I understand the concept just not how you applied it in this situation? My naturopath offered all kinds of alternative treatments and I researched each one and some I decided to try and others I did not b/c I felt they were too risky or too unknown for me. However with OMI and anti-virals I felt they were much more science based and known. So I am not sure if I am applying your analogy as you meant it?

 

[barbc56]

To say these treatments are dangerous just doesnt make sense because if they were as dangerous as some are making out then they wouldnt even be on the market. These patients are being monitored by their doctors, so if issues arise then they can be treated accordingly. Theres also a risk to benefit ratio and many believe that not treating cfs/me is a much bigger risk.

Unfortunately, that is not the reality. Take supplements for instance. In the states they are not regulated so you not only have the uncertainty that what it says on the label is what you are getting but also the supplemental industry is not accountable so how do we know if they are harmful or not. Taking supplements before or instead of seeking medical treatment may delay much needed treatments.

If someone sees improvement, which is great with me/cfs, and using an alternative method, how do we know what is causing the improvement? Is it the natural progression of an illness, the placebo effect or something in the treatment that helps?

There's a great site called What's the harm?
http://whatstheharm.net/

Science based medicine is not perfect as I said above but the alternative may be worse.

Again, please understand that I am not saying people shouldn't have personal choice.

@heapsreal

Please note I am not speaking for all the me/cfs specialists. Going into the subject of which ones I like or don't like is not what this thread is about.

I think I have shared enough of my views that are relevant to this thread, so will not feel the need to debate this any further.

Barb

 

[heapsreal]

Unfortunately, that is not the reality. Take supplements for instance. In the states they are not regulated so you not only have the uncertainty that what it says on the label is what you are getting but also the supplemental industry is not accountable so how do we know if they are harmful or not. Taking supplements before or instead of seeking medical treatment may delay much needed treatments.

If someone sees improvement using an alternative method, how do we know what is causing the improvement? Is it the natural progression of an illness, the placebo effect or something in the treatment that helps?

There's a great site called What's the harm?
http://whatstheharm.net/


Science based medicine is not perfect as I said above but the alternative may be worse.

Again, please understand that I am not saying people shouldn't have personal choice.

I think I have shared enough of my views that are relevant to this thread, so will not feel the need to debate this any further.

Barb

I wasnt refering to alternative treatments but using antivirals, antibiotics etc under a doctors supervision.

Should be an individuals decision to use alternative treatments such as vitamins and herbs i guess, but the dangers of using alternative treatments is probably more dangerous to ones bank account then actual personal harm. The extent to which vitamins etc are used by the general population, we should be seeing some type of massive outbreak if they were a danger to people, but this isnt occurring.

 

[Gingergrrl]

@barbc56 You don't need to respond further if not comfortable but I am still trying to understand if you meant that the anti-virals are unproven & unsafe versus the supplements being unproven & unsafe?

I also want to add that in 2010, I took a prescribed FDA approved drug with TONS of research behind it, Levaquin, and it literally almost killed me.

 

[Sushi]

Err, isn't this thread about interpreting EBV tests??

Sushi

 

[barbc56]

@barbc56 You don't need to respond further if not comfortable but I am still trying to understand if you meant that the anti-virals are unproven & unsafe versus the supplements being unproven & unsafe?

I also want to add that in 2010, I took a prescribed FDA approved drug with TONS of research behind it, Levaquin, and it literally almost killed me.

Last post as our replies crossed.

It depends on the situation with anti virals, antibiotics, etc.

I am so impressed with the study in Norway, as that is how medicine should be determined appropriate or not.

Barb

 

[SOC]

@barbc56,
I don't see that anyone was suggesting undocumented alternative treatments in this thread. The discussion was about the use of standard conventional treatments prescribed by doctors with extensive knowledge about ME/CFS.

Do we refuse antivirals and immune modulators prescribed by experts like Klimas, Lerner, Montoya, Petersen, Kogelnik and so on because Dr Edwards thinks we don't have pathogens or immune dysfunction? I say no.

I'm not making my daughter wait until she's 40 years old with no college education and no life because the information about pathogens and immune dysfunction in ME/CFS won't be in the medical textbooks until then. I had her treated by expert clinician/researchers NOW so that she could stay in college, go to graduate school, get married and have a near-normal life for the next 10-20 years. In this mother's opinion, that's better than making my child spend her 20's and 30's housebound, or even bedbound.

 

[Gingergrrl]

Err, isn't this thread about interpreting EBV tests??

@Sushi I think we all got off track but it was in the effort of trying to clarify Dr. Edwards view on EBV testing and anti-virals as a solid treatment regime. But I think we can get back on track .

 

[heapsreal]

I think if one tests positive to ebv (just igg)but those with other infections like cmv/hhv6 not so much, its worth trialling antivirals like famvir or valtrex and see if one improves. These meds have been shown to be safe long term and should be done under the supervision of a doctor. Sometimes the only way to know is to trial a treatment.

Some MS patients are trialling antivirals and getting positive responses, so another example of ebv testing being inaccurate and possibly ebv being a cause of another illness or playing a big part in an illness. Not everything can be seen or tested for i guess.

Im not going to wait 20yrs for them to say antivirals are useful when we have more then 20yrs now showing it helps??

 

[Jonathan Edwards]

Err, isn't this thread about interpreting EBV tests??

Sushi

@Sushi I think we all got off track but it was in the effort of trying to clarify Dr. Edwards view on EBV testing and anti-virals as a solid treatment regime. But I think we can get back on track .

We have probably aired the same old debating points long enough but let me say what this thread is about for me.

If you trawl through all the recent PR threads I do not think you will find a single place where I have discouraged the development of new treatments based on speculative ideas. After all that is why I am here - to do that. Nor have I at any point, I think, discouraged anyone from taking their own decisions about their own treatment. I have not discouraged Gingergrrl from going to OMI and certainly would not do so. I have only met Dr Kogelnik but I would suspect someone with ME is better off going to see him than almost anyone else in the US. I have somewhere said that if I had had ME for ages I would get my friend Samantha to give me some rituximab - even though the evidence for that being effective is no more than a hint. I am the last person to discourage people from taking charge of their own illness and treatment. So I read a lot of these posts thinking 'straw man' (http://en.wikipedia.org/wiki/Straw_man).

What I am concerned about is something quite different. It is advising others on what they should do or what they should think. That has come up in relation to me advising researchers about setting up a rituximab trial. It has come up recently with my suggestion that I could ring up Sasha's physician to tell them to give Sasha a particular treatment for OI. It comes up here in relation to advising people on interpretation of tests.

As a doctor I have been advising people on what to do about their illnesses for forty years. I get satisfaction from thinking that over that time I have probably helped a lot of people. I also wake at night maybe once a fortnight, year in year out, remembering the few times when I gave the wrong advice and it had serious consequences. I know of two occasions when somebody died and they might not have done. Who knows, but I will have those nightmares until I die. Advising people on medical matters is for real and we have to take responsibility. I don't think it actually matters whether one is a doctor or not. We have to know we are justified in giving that advice.

All the cautions I have been raising are about getting the facts clear enough to justify advising someone ELSE what to do or think. The level of justification for advising is much much higher than when making a decision for oneself.

 

[Valentijn]

Unfortunately, that is not the reality. Take supplements for instance. In the states they are not regulated so you not only have the uncertainty that what it says on the label is what you are getting but also the supplemental industry is not accountable so how do we know if they are harmful or not. Taking supplements before or instead of seeking medical treatment may delay much needed treatments.

This thread isn't about supplements. It's about taking anti-virals to deal with an active chronic viral infection which has been detected via mainstream testing.

Dragging in a completely unrelated issue makes it seem like you are trying to draw a comparison between the two situations. Or were you just going completely off-topic for no particular reason?

 

[Valentijn]

All the cautions I have been raising are about getting the facts clear enough to justify advising someone ELSE what to do or think. The level of justification for advising is much much higher than when making a decision for oneself.

That's something that we keep in mind around here any time someone asks for help, or even demands assistance with medical treatment. And if we temporarily forget, the moderators will remind us

Hence we're usually very clearly talking about personal experience, or the experiences which some ME patients have anecdotally reported here and elsewhere, and sometimes basic theories based on research, etc. If anyone gives outright medical advice it's usually along the lines of "please try to find a doctor to help you with that" or "try to get more testing".

But there's 0 chance that we'll stop sharing what works for us, or what might work in some situations. There's simply no other form of assistance available for too many patients.

 

[SOC]

What I am concerned about is something quite different. It is advising others on what they should do or what they should think. That has come up in relation to me advising researchers about setting up a rituximab trial. It has come up recently with my suggestion that I could ring up Sasha's physician to tell them to give Sasha a particular treatment for OI. It comes up here in relation to advising people on interpretation of tests.

All the cautions I have been raising are about getting the facts clear enough to justify advising someone ELSE what to do or think. The level of justification for advising is much much higher than when making a decision for oneself.

You have brought up a valuable point here. You should never feel the need to advise any member about medical matters. In fact, as @Valentijn pointed out, we have a specific rule against it.

Rule 5: No medical advice
Members may offer their opinion or make suggestions but they may not tell members what they must or should do.

So at no point should you feel in the position of giving medical advice here. We talk speculatively and we talk about personal experiences. We don't give medical advice. That applies not just to non-physician members, but to physicians as well. Do not feel obligated, or even inclined, to respond to people asking for direct medical advice that would involve telling people what they should do about any medical situation. Such requests are inappropriate at PR. They lead the responder into violating forum rules, and possibly laws about treating patients without adequate knowledge of their history and condition.

That's something that we keep in mind around here any time someone asks for help, or even demands assistance with medical treatment. And if we temporarily forget, the moderators will remind us

Hence we're usually very clearly talking about personal experience, or the experiences which some ME patients have anecdotally reported here and elsewhere, and sometimes basic theories based on research, etc. If anyone gives outright medical advice it's usually along the lines of "please try to find a doctor to help you with that" or "try to get more testing".

But there's 0 chance that we'll stop sharing what works for us, or what might work in some situations. There's simply no other form of assistance available for too many patients.

@Valentijn has explained the medical advice situation well. The rule about medical advice does not preclude speculative discussion, sharing of experiences, or suggestions for topics or treatments to investigate or pursue with your own medical practitioner. It does not preclude sharing of information about lab tests, for example, that is available online, through research, or from another person's medical practitioner. Ultimately the patient member still needs to work with his or her physician to receive guidance and treatment, and use his or her own best judgement about testing and treatment.

So, @Jonathan Edwards, don't worry about giving bad medical advice here at PR. There is no need to give medical advice at all, and it's actually against forum rules to do so. Feel free to speculate, share experience and information via whatever you consider to be legitimate sources, or suggest that a member consult with their own physician about some particular topic or treatment. We do not hold you to higher standard than we hold the rest of the membership. We are an egalitarian group. No one here is an ultimate authority. We're all, including our physician members, just sharing information and experiences.

 

[barbc56]

I said I would not respond further on this thread but I think this needs to be said.

From my perspective, I have not seen any medical advice given here by anyone on this thread.

Barb

 

[Gingergrrl]

If you trawl through all the recent PR threads I do not think you will find a single place where I have discouraged the development of new treatments based on speculative ideas. After all that is why I am here - to do that. Nor have I at any point, I think, discouraged anyone from taking their own decisions about their own treatment. I have not discouraged Gingergrrl from going to OMI and certainly would not do so. I have only met Dr Kogelnik but I would suspect someone with ME is better off going to see him than almost anyone else in the US.

@Jonathan Edwards I don't want to re-hash this whole discussion but want to acknowledge what you wrote. I never once felt that you were trying to discourage me from getting my treatment at OMI or give me advice. I was just interested in your ideas on EBV testing and what constituted an active or re-activated infection b/c it was a different perspective than my own current beliefs. I appreciate that you are here on PR and for all that you are doing in the Rituximab study/trials.

 

[Jonathan Edwards]

Dear SOC,
Thanks for the comment. In fact I was talking about something rather different. It may not have been clear because I was trying to avoid treading on too many feelings. I have discussed with the relevant people about treading a rather fine line here but have been encouraged to keep at it.

But never mind, maybe some people will have got my gist.

I think I have probably said all that I usefully can for this thread and I guess aussie777 has had a pretty fair discussion of the question so I will sign off here too.

On a lighter note, if anyone still needs to be convinced that I am not a stuffy old supporter of the Establishment View, you might take a look at my UCL webpage http://www.ucl.ac.uk/jonathan-edwards and you will see that I am not even from this planet. In fact I am the real Mr Spock from Star Trek. The man on telly is just an actor. I am completely incapable of allowing emotions to affect my logic (although it is a cruel misrepresentation to say that we Vulcans have no emotions, we feel deeply too, but tend not to show it).

And I keep forgetting that irony is a peculiarly English pursuit, but ...

Best wishes to everyone.

 

[A zombie]

My doctor tells me it is a past infection- however, if all my titers are positive what makes him say this?! A person going through the acute stage would have the same high level titers as me, right? It makes no sense to me. I'll I can say is doctors are incompetent, and rightfully so, at diagnosing and interpreting EBV results. There's not enough awareness out there. If only they were in our shoes. Personally, I know I am going through chronic mononucleosis resulting in CFS- my symptoms are the same as when I went through the acute part of the infection, only less intense. I still have yellow mucus and go through acute stage symptoms when I exercise or drink too much caffeine- it's as if my body has trouble regulating the virus when it is pushed too far. There's my rant for the day, sorry

Dr's are incompetent at diagnosing a lot of things!!!!!!

 

[Clerner]

You always must be your own advocate and do your own research. Unfortunately, doctors are still unfamiliar with fibro/cfs/me. I have taken articles to my rheumatologist about lack of IgM and high Igg titers, and intracellular infections. Mine was willing to read up on cfs/fibro and active chronic viruses and infections. At least I feel I'm helping the next patient down the line with cfs/fibro!