Rhode Island is the only state which has specifically passed legislation which prohibits medical boards from disciplinary action against doctors who treat Lyme and tick borne infections with long term antibiotics. It is also the only state which requires insurance companies to pay for long term treatment for Lyme disease.
Fear of board and licensure issues has driven many Lyme docs and their patients underground. This is a significant factor adding to the cost of treatment.
The template of change seen in Rhode Island should become the basis of needed change in many other states.
Political changes must occur so that doctors can treat this illness like other chronic illness, without the fear of persecution from colleagues who are excessively judgmental and ill informed.
I feel that patients suffering with Lyme disease should have access to affordable care.
Physicians must also become better informed about the use of supplements which can dramatically increase the cost of care, and in many cases not be necessary.
Most LLMDs do not participate with insurance plans. The treatment of chronic Lyme patients is complex and requires a great deal of time and effort from the treating physicians. The laboratory evaluation- frequently not covered and the cost of various therapies, also not covered, has in many cases only allowed patients who are well heeled to seek the needed care for what can be a devastating illness.
Cost effective protocols must be established. Perhaps this can be best accomplished by the use of nurse practitioners, physician assistants and others, who can at least aid in the process of educating patients about the disease.
Many changes in the system are needed, to allow access to good care for Lyme and related illness to patients of all socioeconomic groups.
4 comments:
Dear Doctor -
I know that this blog is about me - and I have to say that I was just as upset as you were after my appointment. In fact, I was rather pissed off...You need to see it from the patient's perspective - I've had chronic pain for over 15 years (at least). Also, whereas I'd never been heavy, I now had issues with weight. Could they be co-related? Of course. However, for the first time, I had an actual physical where the doctor put his hands upon me. He listened to me. He seemed to understand, and was reassuring in that the aches and pains that I had been experiencing were real and not made up fiction within my mind.
However, this same doctor is focused on one disease...What if my symptoms are/were something else? You look specifically for Lyme Disease which can be mistaken or appear as so many other things. Even you doubted your diagnosis and ordered another blood test for a lyme lab - specifically - due to the fact that my clarity of mind was so clear and strong. However, the next month, I suddenly experienced frightening short-term memory issues - which have since resolved after the installation of a PICC line and the infusion treatments of Rocephin.
I'm sorry that you are so angry - I appreciate that you are trying to help people. Yet, for those of us who do have a chronic condition, it is necessary to go to and be treated by a physician that accepts one's health care insurance, so as to continue to be able to receive the medications and tests necessary.
As a health advocate, at least for myself, I too am now educated on this disease. One of the benefits of seeing someone new is to be able to provide this unbiased, and perhaps unfocused individual on the trials, challenges and successes of various forms of treatment.
As for your belief in supplementation, etc. - I have been following Dr. Burrasco's treatment plan - other than the drugs which I took under your direction. The supplements, constant exercise and dietary changes (no dairy, no wheat, no gluten, no flour - just fruit, veggies and lean meats) have allowed me to quickly establish weight loss, and in turn have removed me from many of the symptoms that had been plaguing me for so many years. Who is to say that weight loss (33 pounds) didn't affect the chronic pain? I don't have muscle cramps, my skin looks better...
These are just my thoughts, my doubts and my concerns. Sometimes, it is necessary for the doctor to see it from the patient's view point.
You said that you had lyme. However, you also work with people who can write Rx, correct? Is this what got you interested in the disease? And if so, once you read the differences between the treatment guidelines, did you actually determine through experimentation which director worked more efficiently and completely in regard to ridding yourself and your bodily systems of the bacteria? If not, why not?
I know, as does the CDC, that early diagnosis is key. The CDC and NIH are currently doing testing to determine whether chronic lyme disease does exist - and what they have found out so far is looking postive to patients who do have this condition. It seems that Lyme Disease is so much more than what people originally thought - as more is found out, the better it will be. Currently, it is all trial and error.
I am sorry that I upset you. However, it is absolutely necessary to understand that patients need healthcare coverage. As it is, my insurance company has not approved the secondary request for extension of the IV rocephin. I meet with the new doctor this week. If I can, I will continue to visit you as possible, but it will not be on a monthly basis - as this is not an affordable choice for me.
Good luck in your practice. I hope that you wish me well too.
Blymey
I am sorry if I appeared angry. I do look for things other than Lyme. Lyme is the most common cause for your symptoms and the diagnosis turns out to be correct. I have found that are very few doctors in the area have familarity with chronic Lyme. Certainly this is true of all the infectious disease specialists, all the rheumatologists and all the neurologist. They are still practicing based on discredited IDSA guidelines which basically say that chronic Lyme is non-existent. Patients with chronic Lyme have frequently seen 40 doctors or more before they find one who treats chronic Lyme. Some famous persons, including Amy Tam have been down this road. The major univerisites such as Johns Hopkins, do not accept the notion of chronic Lyme. Lyme doctors who are passionate about helping people as far as I can tell do not take any insurance plans. When I attending the ILADS meeting doctos were specifically warned not to participate with insurance companies to avoid disciplinary entanglements. Patients with Lyme travel all over the country seeking help. Many travel to New England and as far away as California. These other doctors with whom I am familiar, require cash payments up front. Cunsults range from $450.00 to well over $1000.00. Most of these doctors then order expensive lab test to the tune of thousands of dollars, not covered by insurance. I don't think I am the smartest or the best Lyme doctor. I don't have the experience of Dr. Burasaccano, who no longer sees patients. I understand he charged $1000.00 dollars for the initial visit, and was criticized as using Lyme as a profit center. I try to work with patient and provide cost effective care. I think the high cost of Lyme is a travesty. I want to help you and harbor no ill will. It was not my decision to drop your insurance. I am in a group and this was negotiated by the managing negotiator for the group. BC BS was reimbursing 50% less than other insurance companies. I am still hopeful that we can reach a settlement with them. Best wishes.
Does this mean your group is dropping all BX plans or just the HMO?
Blue cross PPOs accepted
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