Monday, October 6, 2008

31 band

Sometimes you only get a 31 band, like a patient I saw today. She has an IND 41 band with a +31 band. This is on the IgM side. Her IgG showed +++41, IND 31,34,39. IgeneX calls it negative. Her previous Labcorp WB showed no reactive bands. After antibiotics she had a typical Herx and was getting better. She still wanted more proof that she has LD. I spent 40 minutes explaining the nuances. She didn't get it. It is difficult to treat patients when the concepts seem so foreign. (This is not to disparage the patient since I would get the same response from mainstream doctors in the community). I could not get through even though I drew diagrams and did my best to simplify the issues. She, like many patients told me that she would no longer read things on the Internet. She would not see "Under Our Skin." She would not read this blog or books on Lyme disease. She is already incredibly anxious and the thought of doing more research throws her into panic mode.
So I ordered the $100.00 31 band confirmation test through IgeneX. This test uses an additional antigen which confirms exposure to Bb with 98% specificity. I still couldn't explain that a positive result would only confirm exposure to Bb. It does not mean you have Lyme disease. I am starting to understand why LLMDs charge $1000.00 per visit. It screens out patients who cannot grasp the concepts. By the time patients are willing to cough up that kind of money they know more about tick borne illness than their physicians.

It is frustrating when second opinions from ID specialists present only the IDSA point of view. There is no acknowledgment that another perspective exists at all.

I hope that other physicians in the community can become versed in the issues.
This will be a long and difficult process.

5 comments:

lymie said...

I don't think you can help some people, especially if they are not willing to put some effort into being their own advocates. Lyme requires educated patients. If you are dealing with the diagnosis issue at the outset, what will treating this person be like? They have to be ready for it.

Many of us (lyme patients) have learned the hard way that we can't reach everyone in lyme advocacy efforts. If people with health problems are not willing to meet us halfway, it is a waste of time to keep trying to explain why they should check into tickborne diseases as a cause.

My own sister-in-law, who had a tick attached for two days, was blown off by her longtime primary care doc, did not go any further in trying to get early treatment, even when given a stack of info. She thinks she didn't get any diseases from the tick. Well, I hope that is true, but am very much afraid this decision will come back to haunt her later.

dogdoc said...

Ok doc- breathe deeply for a moment. Remeber when you told grasshopper she needed to channel that negative energy into something else?
A suggestion that might help with the doubting or clueless (I deal with that all the time) ... instead of focusing on Lymes only at that point, try a little different approach. Say Lymes is a common disease so a lot of people have it. But there are a lot of chronic bacteria that can cause similar problems and all of the tests just show exposure to the diseases. There are no tests that can tell you for sure exactly what you have. But even if we can't always tell for sure what we are treating, we can make people better by treating them. A lot of antibiotics treat all of these types of disease, so in the end, if we can't give the disease a name ... at least we can make you better. Do you feel you are responding to the antibiotics? Do you want to continue the treatment since it seems to be working?
You know its Lymes- but this is such a controversial area, it is very hard for a lay person to wrap their heads around the different conflicting opinions. I have seen this first hand. I think stepping around the controversy for the uneducated to start may help. As they get well, they will have more energy to learn why. They are probably being told a bunch of bs by someone that is counterproductive, like your IDS friend (ha-ha). You can't convince someone like that- you have to tell them they have to make up their own mind about how they want to be treated. You can explain to them their options, but they have to decide for themselves what is the best approach for them. You can take the tests there are and treat the best you can based on clinical signs, but there is nothing else available to do. In the end, if a patient is getting improvement from antibiotics, then they have something bacterial- either Lymes or another bacterial disease. Thats really all we can do- medicine just doesn't have a good test yet for this type of disease.
This type of approach works well for me for these clients.

Lyme report: Montgomery County, MD said...

Sometimes it is better to be a vet.
A veternarian friend of mine once said that dog illnesses are divided into those which respond to antibiotics and those which don't.

In human medicine diseases are divided into those which respond to steroids and those which do not.
A slightly different mind set.

Doctors like multisyllabic words. It's a great smoke screen for ignorance. A disease is of unknown etiology or it is "idiopathic." Best I can tell this translates: The patient is pathological and the doctor is an idiot.

Thanks lymie. It's my nature. I want to help everyone.

If people think the water's just fine as the Sunammi is cresting there aint much you can do.

I talked to a doctor today who does alternative medicine. She knows about Lyme. She has heard Dr. Burasccano talk and she even uses IgeneX at times. She was concerned that long term antibiotics are dangerous and that they only work because of "anti-inflammatory" effects. She wanted me to tell her how long her patient would be on antibiotics. Exactly how long?
This is what I heard from a "progressive" doctor. She also told me that she didn't want to treat Lyme because it is "boring." She said that our common patient is very difficult. In fact, she is one of my easy cases.

Doctors like dogdoc are a rare breed (pun intended).

Thanks for all your entries.

dogdoc said...

Hey doc- we like your nature. I hope we all are not a rare breed. I've always said the day I stop caring I will go do something else. Actually we define it as ones that respond to antibiotics or that respond to steroids. Or when it doubt, never let anything die without the benefit of baytril (thats our cipro) and prednisone. My clients love it when I explain that ideopathic is the doctor word for we don't have a clue but we want to make it sound good. Antibiotics are dangerous sometimes and they do have antiinflammatory effects. But the Borrelia have some really nasty side effects themselves. When did docs stop trying to fix people- like its not my problem if you don't respond. I read a commentary long ago that said there is no DMS IV for antibiotic seeking behavior(or whatever that shrink word was for the statutes of pysch behavior). Look these people are suffering- someones got to try to fix them even if we don't have it perfect yet. Its really easy to pass judgement on those who do- but in the end, lets see who the final judgement is in favor of.

MariaJ said...

PLEASE DO NOT CHANGE ANYTHING!
Keep on saying the things up front as you always do and keep treating the patients with that honest will of helping them.
May God forgive the envy of that person,- is she a Doctor?, wow - who is willing to harm the good she sees in you.

Don't stay put. You have many patients who can testify about the treatment they have received from you. Be prepared and ready to defend.
Sorry, lawyers who say don't do anything, are lazy!!!! It's your life and profession, not theirs!!!
(Is your lawyer going to sue me?)

Please keep on your job, we need you; the world needs you; and we need more like you!

No, I am not a patient of yours;
for the record I am a person suffering symptoms of something Doctors negligently ignore, who has benefited a lot from your generous honest posts.