The post entitled "Routine Physical," is the essence of my quandary. I have been clearly instructed from legal quarters: DON'T DO LYME- JUST DO REGULAR FAMILY MEDICINE. How do I do that? To paraphrase Plato: Once you have seen the light it is impossible to return to the cave. The old me, the pre-Lyme me, would have thought: "Of course he has brain fog, he abuses alcohol and marijuana, what does he expect." "Depression- sure- common, connected to substance abuse." Aches and pains- It is just a somatic manifestation of his depression and other issues." He would have been treated with Prozac and Motrin; and sent for extensive substance abuse counseling and rehab, for which he would have likely been non compliant. He would likely have never returned to my office and been "lost to follow up." This is the world I am told I must to go back to. For God's sake, this patient had 12 of 13 standard bands positive on a Lyme Western Blot WHICH I OTHERWISE WOULD NOT HAVE ORDERED. NOW HIS ENTIRE LIFE HAS BEEN TURNED AROUND BECAUSE HE HAS BEEN TREATED FOR THIS NON EXISTENT LYME DISEASE!
The Lyme community is busy spitting hairs while the system prepares to throw yet another LLMD under the train- AND then how many more?. Folks if this is important, and of course it is, PLEASE unite over the big issues. News Flash: A single payer system utilizing "Evidence Based Medicine" will be a disaster for the Lyme community if the ILASDS guidelines are not put into the mainstream. This will only happen through political change.
I started this blog for personal reasons. It was a therapeutic way of venting my frustrations. I began writing about odds and ends, patient stories and my understanding of the science as it has evolved. Perhaps the Blog took on a life I had not considered. Often I say things that challenge the status quo and force people to think. That is the point. We are all learning. It is a work in progress.
The debated about CAM must come to an end- at least here. That is another battle for another day which should be fought somewhere else. Yesterday, a patient with neuro- degenerative disease asked me if IV glutathione would be of help. I told him I didn't know but that perhaps he should explore this avenue. I certainly had nothing to offer from my bag of tricks.
I personally am not CAM. I was trained as an allopathic physician and that is the model within which I practice. Unfortunately or not, depending upon your point of view, a mainstream acceptance of chronic Lyme can only come from an allopathic perspective. In terms of the pecking order of "the system," CAM physicians are at the lowest rung on the totem pole.
I DO NOT DISPARAGE CAM PRACTITIONERS. They frequently are very valuable. I think it would be an insult to well trained CAM doctors if a physician like myself were to casually enter into the fray. These physicians, many of whom are quite accomplished, have spent many years honing their trade. Patients should make informed choices and discover what works for them.
Medicine sometimes seem like a religion. Perhaps in many ways it is. To the extent it is possible, Lyme medicine must be fact driven if we are to win this war. The discussion should not be: "So you don't believe in Bartonella." Rather the discussion should be" "The Bartonella hypothesis is interesting, what evidence do we have to support it?"
Having given this a great deal of thought, if I were to be told by a governing body of physicians, as may happen in the near future, that I have to follow the IDSA guidelines, then I could no longer in good faith be able to practice the medicine that I love. I couldn't live with myself if I were compelled to throw this young man described in the vignette above "under the train." I already have enough trouble sleeping some nights.
I am a Complementary and Alternative Medicine user (herbal medicine specifically). I just want to say that I wholeheartedly support your position on it, however, for the moment. you're making your point well.
My question is- what can we actually do to solve the problem (besides the obvious and already done like write congressmen, ect).
If you can recognize the clinical signs of a disease, its laboratory parameters, and you can treat it with a predictable response to therapy across a wide patient base- it IS a disease. Everyone deserves to be treated if they have something treatable and choose to be treated with informed consent. Emotional and substance abuse problems can be the result of living with a physical illness. Obviously, a subset of doctors has recognized a clinical syndrome and learned to treat it. I say syndrome, because the laboratory and clinical responses vary in subgroups so we are likely to be treating different subgroups of disease.
It is being treated as "Lyme" and "Bartonella/ Babesia" which mainstream medicine objects to because these are not classical manifestations of these diseases and their treatments. Everyone is fighting over the names and missing the point- there is a real disease syndrome that can be treated that is out there. How can we bring the groups to the middle? "It is not Lyme"... they have a point sometimes- we do not know what it is in many cases because it does not test and treat like "Lyme". However, it is a real disease syndrome. Real people get really sick with it and get well when you treat it. How can we get medicine back together to get this disease/ set of diseases elucidated and studied while continuing to treat people that have it in the meantime? The more we say but it IS Lyme- the more we polarize the fight.
There is an "option" to write about those so called guidelines. What should we write? we can help if we unite! we really need to do it!
Is there a way to meet in the middle instead of fueling the fire continually? Ok- so maybe it is or isn't Lyme- but its real and it responds to antibiotics, so who can figure out what it is? We have to have a diagnosis code to fill in on all the paperwork, so give us a better one and we'll gladly use it.
Your view of CAM had changed drastically as have other things. You only have to look back at other blogs to see it. It is written in black and white which makes patients like me, who followed you wonder: Would I have facial neurolgia (the suicide disease as I have never known such pain) now if I had incorporated some of the CAM practices? WAs the last clinic correct in incorporating these practices? Now it is "Well, nothing left in my bag of tricks so I will now endorse it. Would I be in the third stage of this disease when diagnosed when I had a bullseye rash? You were so sure and I believed. Now you suggest I, and I guess others, try what some CAM doctors use. You had just begun to treat Lyme when I came there. I had no idea but even if I had what option is there? I'm going to try to get into Dr. Fallon's study in NY. Read about it if you read your blog responses. I'm sending documents. I will move. I will do anything because if I don't I will die. I know this now. You think if you just had to change professions it would kill you. No. Many of us do that and survive just fine. As for me, I know I will die by this disease or my own hands if I do not do something. I can change professions and it would not hurt me one bit. Do it. Your lawyer says so so quit whining and do it. Teach. Write. Whatever. You will be fine.
bitten, you are the one whose views seem to have changed. In your previous post(s) you did not sound so bitter or depressed. Any professional can change jobs, but some fields and individuals leave a more profound effect by their presence/practice, or leaving/void. We need all of the good, sincere, and balanced LLMDs (for lack of better label) we can get. All professionals evolve in their thinking and practices- if they continue to become more experienced, learn and grow.
I am sincerely sorry for your struggles and pain and hope that you find the help you are looking for soon. But, please do not rip apart a doc who wen out on a limb to treat you and so many others, with the knowledge he had at that time. It's all relative-
your quality of life could be way worse if you had not seen LymeMD than it is now. Count your blessings!
If there's one common thread in the recent blogs it's that we need to unite, not quibble over yet unproven "bugs" and CAM treatments.
Yes, what can we do (besides the letter writing which I have already done)? You have done so much for so many. How can we help you?
The way that the controversy over Lyme has devolved into a battle of IDSA versus ILADS is what disappoints me the most. How many resources have been poured into a fight to defend the position of one group and attack the position of the other? Both sides have some evidence based on scientific methods to back their position, but I think it would be pure hubris for either side to believe that they have an exclusive grasp of the truth about TBI.
Microbiologists seem to be fascinated with Bb, yet we have so little of that body of knowledge that can be used for clinical treatment. How did we ever get to this state, but better yet how do we redirect efforts towards more funding for finding the answers to questions we already have?
Sometimes it seems that the IDSA and ILADS are like two kids fighting over a big black box. Both think they know what is inside, but the first order of business is making sure the box is _yours_, not finding out what is really inside.
Who knows how long they can fight over that box, but until the box is opened and the wonders and terrors inside are exposed, people will continue to suffer.
IDSA is against ILADS.
They are the ones who want to take our medical licenses away.
We(ILADS) would be happy to live and let live.
If it seems like we are attacking the IDSA it is because the right to treat patients and lives are at stake.
It is purely defensive.
In the case of war you always have to ask: Who started it and why?
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