Tuesday, August 12, 2008

To treat or not to treat that is the ?

A 46 year old male looks well, the picture of health. His wife has Lyme disease. His IgeneX WB for Lyme shows a 41 band and an indeterminate 31 band. He feels tired. He feels somewhat forgetful. He forgets names, numbers and generally has difficulty with word retrieval. It has progressive over several years. Perhaps he has other vague cognitive symptoms. He functions well at work as an engineer, but has to "push himself harder" to do well there. He has no pain. He has no neurological symptoms other than than the "subjective" cognitive complaints. A brain MRI is normal. A spect scan has not been performed, but I suspect it will negative as well. Of further interest, he has taken a course of antibiotics for several months in the past and felt he was improving. His symptoms seemed to worsen off treatment. It is clear to me that other doctors would say his symptoms are compatible with aging, depression or something else. I don't even know if most LLDS would treat him. My gut tells me spriochetes are busy multiplying in his brain. I feel compelled to treat. I don't know if its the right thing to do. This is where the "art" of medicine supersedes the "science." Comments welcome.

20 comments:

clem said...

Years ago my youngest son had profound hearing loss due to otitis media. We were surprised when we realized that he had been lip reading. The ear specialist told us it is very difficult to detect deafness in very bright kids as they learn to compensate.

My lymie child has a genius IQ - still testing quite high despite chronic Lyme. But she knows the differences and changes Lyme has made in her cognitive abilities, and how hard it is to do some things now that before she never thought twice about. The neuro-psychologist told us we were lucky to have had pre-Lyme testing as a benchmark to compare the then with the now.

Your patient knows how things were for him in the past, he may or may not realize what coping mechanisms he is employing to get through the day. I say you should trust his judgment (and yours), especially if he sees improvement with the meds.

Would a C-6 peptide test help?

Frosch said...

It's true. I was seeing a neurologist for a year for headaches and did not complain specifically about fatigue. Through some sleep testing for the headaches at first, I was diagnosed with moderate hypersomnia. In retrospect it should have been obvious-- but I was so used to dealing with the fatigue, that I always attributed it to something else or ignored it. We sure do learn to cope.

Frosch said...

As for your case, I would agree with clem, try the C6 on him. Also, did he seek you out on his own accord, or did his wife push him? If he sought you out, he may really be suffering. I wouldn't spend too much time thinking about the spirochetes multiplying in his brain though. Are the antibodies IgM or IgG? Did you do the 31 band confirmation test?

Lyme report: Montgomery County, MD said...

Brain involvement should be assessed with a contrast MRI and a SPECT or PET scan. IV antibiotics should be given to get through the blood brain barrier. Lab tests are not helpful in determining the type or course of treatment. A C6 may be positive or not. A 31 band only needs confirmation if no other highly specific Bb bands are also present- unless you really want to spend extra money? Cognitive deficits can progress. I recommend early and aggresive treatment as well as long term treatment. Wa it pre-Lyme testing or early stage 3 Lyme testing?

Frosch said...

You only mentioned 41, which is not a highly specific, that's all (I know what Igenex says). But I realize 41 is often one of the few bands some patients show reliably.

C6 may or may not be positive? Don't you feel you need to try it? If it is detectable, that could support your suspicion.

clem said...

This is an interesting blog and a way for patients to understand a doctor. It would be nice if all doctors did this, since there are such differences in approach.

However, is it safe for a lyme doctor at this time to be so open? The address for this blog has been posted now on lymenet, which is read by a lot of people, not all of them friendly. In fact, some are the opposition and they gather info on the internet to use against us. Plus, some of your comments about other lyme docs might antagonize them. Does your attorney know you are doing this?

Sorry to have two clems on this blog. I am not the one who posted about the son with hearing loss.

Lyme report: Montgomery County, MD said...

Many LLMDS will make the diagnosis with a single highly specific band such as the 23,93,31 or 34. Every patient with a 31 band I have tested with the confirmation test is positive. On the other hand, every patient I have tested with a 30 band with a confirmation test has been negative. The problem with C6 testing is sensitivity. When I compare CDC positive WB results and C6 index results the average C6 index is only about 0.2 I have spoken with the lab director at Immunectics, the lab which invented the test; I asked him to explain a non zero value in a patient who has not been exposed to Bb. After several calls and much badgering from me, he admitted that any value greater than 0.1 might be due to Bb exposure. Gary Wormser, the main IDSA, anti-ILADS point man is on the board of Immunetics. The test was only validated for acute Lyme. According to the paradigm of this testing chronic Lyme does not exist. I always get C6 tests. Some patients with no WB bands (on the limited 13 band test) have C6 indices of around 2.0. I interpret C6 indices differnt than most other docs. Levels above 0.4 to 0.5 are positive in my mind. Levels over 0.1 merrit further investigation. C6 levels which increase, associated with a Herx after therapy are considered positive evidence as well. The diagnosis is made by looking at the history, physical and a synthesis of lab data to support the diagnosis already made with the history and physical. That's how all doctors were trained to function in the past. Unfortunately, some physicians substitue clinical data with lab and imaging data to the detriment of their patients.

Frosch said...

C6 is specific to borrelia, as such it could be due to relapsing fever exposure, or Lyme not caused by Bb strictly. Sure that is unlikely, but it could be one of a few other diseases (all of which could warrant largely the same treatment).

Officially the C6 is just a second ELISA. But we know it likely means more than what it is FDA approved for.

The third ID I saw said the C6 is a great test before I had it, it came back 0.96 and reflexed to a 'negative' WB and the ID dismissed it. Exact words "it's just a test" and proceeded to say he didn't think I had Lyme.

That is why I guess, when you do a good research study, you declare what your statistical threshold for significance will be beforehand. Anyhow, went back to 2nd ID and got treated, informed 3rd of positive WB after initiating PICC and he said he supported my decision to treat after all. As such, I think docs are human, and as such it is good to stick to your criteria. Now it can be right to be flexible, but at least not loose sight of what ones criteria were. That applies to medicine, science and many things in life.

Lyme report: Montgomery County, MD said...

I have to respond to clem. I must have made a mistake. I thought this was the United States of America. I thought there was freedom of speech; isn't that one of the ammendments to the constitution? Do I have to be paranoid that "they" are out to get me. I am sure my lawyer would disaprove of my openess, otherwise he wouldn't be doing his job. Why is Lyme a political hot potatoe which engenders so much fear? I am relating my thoughts and experiences. I do my best to apply sound scientific reasoning and common sense in an effort to help my patients, many of whom are critically ill. I don't recommend experimental therapies or potentially dangerous treatments. Of course no medical therapy is entirely without risk. People have died from penicillin and aspirin. As a physician I make hundreds, if not thousands of decisions on a daily basis. I am expected to be right nearly 100% of the time. Most doctors are afraid to step outside the mainstream box because of the fear that someone will accuse them of doing something crazy or dangerous. They are more worried about their professional butts than helping the patient who sits before them. Every decision I make involves a risk benefit analysis, whether it is made consciously or unconsciously. If I see a patient with progessive mental decline tantamount to full blown dementia, and I know of a treatment which could potentially reverse the process, I couldn't sleep very well at night if I let the disease take its course. Is everything on my blog correct? I am sure it is not. This is a learning process for me as well. I welcome criticism and feedback. Occasionally I see a patients who asks me: "Do you think Dr. So and So will be upset if I get a second opinion." My answer is always: Any good doctor would encourage you to get a second, third, fourth or fifth opinion. A doctor who is so egotistical that he is offended by the thought of his patient seeking out another opinion is a lousy doctor. If I "dis" other doctors, I do so in good humor. I am thrilled with any physician who takes Lyme seriously. They are welcome to tell me why I am wrong. When I see therapies such as intravenous hydrogen peroxide or colloidal silver, it worries me that these treatments may be very harmful, so I put me beliefs out there. When did medicine become like politics. Are we after the dirt of docs "on the other side" like democrats and republicans, searching for nefarious ways to discredit the other side? I can be as cynical as the best of them; but, as my significant other likes to remind me; it is far better to be positive and optomistic and to believe that all people, including doctors will some day work together to find solutions to the problems which confront us all. Life is short. I can't solve all the ailments of the world. If I can do a small part to make a difference in people's lives then my life has meaning. I am not going to shut up. This is still America isn't it?

Lyme report: Montgomery County, MD said...

Clem: you inspired me to write today's blog.

Thank you

Frosch said...

I'm writing a masters thesis in the area or peace/conflict studies. I seriously considered this whole lyme debate as the topic-- I decided against it in the end, partly for my own sanity. Anyhow, the question of why a bacterial disease is still so controversial also kept me researching more and more.

The last ID doc remarked that in a few more years we would know so much more about lyme, and I remember wondering why he thought so. It's been 25 years + and I don't feel much has happened in the last decade. There's actually more happening in Europe, especially around Munich.

I don't think the blog is too risky. I think Lyme docs get negative action against them initiated by insurance companies and ID docs who see patients who have been to an LLMD. It's not a secret who lyme docs are, its just not openly advertised.

Nvrgiveup said...

I only wish it was true. I feel you are correct and incorrect. I believe you are correct in assuming most LLMD's are "turned in" by insurance companies and ID docs. BUT, I think you are incorrect in thinking this doesn't happen very often. Even with fairly conventional medical care being used, investigations or the fear of them, keeps docs away from treating Lyme. Politics and money, i.e. health care, not the health of the individual, motivate this. Ins. Co. don't want to pay for this "long term" care so they find "experts" to state it is not real and tarnish or destroy the reputations of those trying to help the really sick. This is my opinion (& only part of it). People must educate themselves, find the best care they can afford and then fight for a change! Shame you didn't follow through with this topic. Lymies need all the help they can get & their docs need even more!

Frosch said...

to the previous poster-- I have no idea of the actual frequency of disciplinary action. The ID who treated me knows my LLMD, and they disagree and it is left at that. In fact my ID once treated a suffering woman with >6 months IV abx who was referred to him by the LLMD who does not prescribe IV himself.

That said I find it frustrating that their is such a hostile lyme climate-- without really trying to clarify the lyme controversy with extensive research and funding.

Lyme report: Montgomery County, MD said...

I was "turned in" to the board by an arrogant ID doc who wants to keep the world safe for her ego and world view. The board has been "investigating" me for almost a year. No charges filed. I'll fight this one if I have to but I think the board will drop the case. It is torture for the board to leave the case open endlessly without a peep uttered. I hope I don't have to move to Rhode Island because I like my home state. I don't think I can stop treating Lyme. Its like Plato's allegory of the cave: Once you have seen the light its hard to go back to life in the dark cave. Do we docs need help? No. Patients do. The tides are changing. Medical boards are backing off. More LLMDS are desparately needed. Cynically I believe that change will occur when mainstream docs notice their waiting rooms are empty as patients flock to LLMDS. There is no incentive for change like, you know,... the root of all evil.
And so it goes. FDR got it right when he said: "You have nothing to fear except...."
Comments appreciated.

clem said...

Oh, I certainly hope you are right and the changes happen sooner as opposed to later. But you have readers that certainly won't mind if you move to Rhode Island. ;) Too many doctors refuse to even treat what should be an easy case of Lyme around here- they prefer to defer to the powerbrokers in Boston. very sad.

-clem (the first clem to post in this thread)

Frosch said...

The waiting rooms of other docs will not go empty.

That is not because they are doing a sufficient job, but because there are a lot of people with health issues out there, and very few docs per capita here (for a developed country).

We don't have a free market health system here, despite claims. I also think we may get near universal health coverage in the next few years and many more folks will be visiting available docs.

Lyme report: Montgomery County, MD said...

Universal Health Care will be a disaster. Everything will be treated by cookbook rules. No Lyme therapy. I'll find another profession. In my area we have too many docs. The waiting rooms will empty whey patients figure out that they have Lyme and discover that their doc doesn't "believe" in it.

Frosch said...

Don't you think the current private insurance/ public insurance model also follows a cookbook?

My impression would be that when many people suddenly got healthcare, they would visit doctors en masse to get their saved up and chronic health issues addressed.

As for LLMDs-- it's true, they would not fit in. But then most do not currently either, only accepting cash.

You are the exception, more than the rule it seems, for taking some insurance. And I like that fact-- it lends a down to earth quality to you (at least as much as I can tell from cyberspace).

Lyme report: Montgomery County, MD said...

LLMDs are afraid to take insurance. They think it will nail them to the wall. If there were enough Lyme docs these issues would go away. Ironically, Lyme docs, who passionately believe in what they do, charge out the wazoo, which gives the impression that are greedy and this diminishes their credibility. I have had to lay out thousands in legal bills to defend myself against what? I see where they are comming from. The only answer is to educate patients and health care professionals. There is strength in numbers. Lyme has to come out of the closet.

dogdoc said...

My hubby had an apt comment to add-cost more to fix your truck than us (only b/c of one very nice LLMD). Insurance only benefits the insurance company- not the doc or the patient. The good Lymes Dr's are losing their shirts on all of this and fighting the lawyers b/c they care. They don't have to do that and most docs don't bother. Its easier not to buck the system and collect your paycheck. Understand, I have only one LLMD and he didn't want a $3000 deposit and was very understanding of out of pocket fees. I have seen 15 in network guys including the "best" at the teaching hospital, and have probably spent $10,000 easily at this point with no results. The money I spent at my LLMD was worth every penny and then some. He didn't make anything on us- I have run a practice and know what it takes to cover expenses. He is doing it because he cares and wants to help. First one out of how many before him? And the cost of ineffective care thru insurance is huge. Insurance co's only look at a cost vs profit ratio- that is what they are in business to do. Anything they can find an excuse for not paying for, they will do. It is their profit they are looking for, not anyones health. If we all went back to fee for service, we would all be better off in my opinion. Fees would be cheaper, service would be better. The docs would make the money they deserve and the people wouldn't have to pay as much. These LLMD's who are mainstream risk their licenses and put aside profit to try to help who they believe in. They are bashed by everyone even though they are right alot of the time. They are treating people who have failed many, many doctors. Treating the treatable is a reasonable approach in my mind in these cases. What have they got to lose? Maybe they might win, and maybe they might lose. The treatment is benign compared to the disease. Everyone else has lost or they wouldn't be there. As long as they are honest with clients as to what might or might not happen, these guys are the good guys. There is a lot of treatable unnamed disease in pets with no great diagnostic tests for. You can roll over and give up if no one hands you the answer on a silver platter, or you can dig in and figure it out. Who is doing the best job? The one following the pack and failing the patient? Or be the one willing to stand up and say, I've been at this 17 years and I think I can fix this even if the last two specialists didn't quite catch the boat. I can't tell you how many times the specialists didn't catch the boat and I got left to pick up the slack. I am nothing special in the way of a doc, but sometimes common sense gets missed. In the case of human Lymes disease, I'm not sure common sense even exists. And for all of you out there in cyberspace, wait till its your shoulders that rests on that you make payroll for all your dedicated employees. Then you will understand what profit and loss and what you really need to charge. If you get $50 from an insurance company for an exam, what are you paying your 10 employees that live on what they earn and do it only because they care, not because it makes them any money? Do the math- these guys do it because they care, not because they are getting rich off of it.